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Those who have experience with special needs children,

Posted by seekingadvice (My Page) on
Tue, Feb 27, 07 at 15:54

could you please give me your input?

My first-grade dd, age 6, is 'transitioning' out of special ed at the end of this year. She is in a "regular" first grade class. She was initially thought to be autistic (age 2+), but later that assessment was changed and we were told what she had was developmental delays and processing disorders. She was never officially tested but attended a preschool which included a playgroup for autistic/autism spectrum children. The playgroup completely changed our lives and dd did a fabulous job learning coping strategies for her particular difficulties. She attended occupational therapy from age 3 until just about her 6th birthday. She received speech therapy for 2 years. She developed good social interactions. She shines academically.

So...here is the problem. She has *something* that others rarely see. Everyone thinks she's wonderful and doing great, but lately when she comes home from school she has massive meltdowns that are reminiscent of the massive tantrums she had as a little girl. They include screaming, ranting, hitting, biting, pinching, etc. Her little sisters, dh and I are all targets, but eventually she turns it on herself and will often pound herself on the head or bite or pinch herself and yell at herself. There is no particular event that initiates this behavior, there is just something small that she names as the instigator, like her sister sitting in the seat she was going to sit in. It can take a couple of hours before it winds down. She does not know why this is happening, but will, as I said, name something small that set it off. The same thing happened this time last year, and I'm speculating that she is extremely anxious about the changes that will occur when first grade ends. She really needs an established routine to be comfortable. As long as she's in a comfort zone, she does well, but changes are very, very hard for her. It took nearly 2 months for her to adjust to first grade, and we had to set up a "big buddy" (college intern) plus a spcecial friend (intervention teacher) who met with her once a week in a special playroom for play therapy. The big buddy left at the semester and the special friend program ended a month ago. I am guessing that this didn't help her anxiety any.

I'm concerned that she will no longer be in special ed (doesn't qualify) and that safety net will be gone. I'm concerned that this affects her relationships with others. I believe she needs *something* but I don't know what. She still has the hand flapping, toe-walking and OC behaviors but often in a way or at a time/place where others don't notice. To the outside world, she looks like a normal kid and that is part of the problem. The school, teacher, and case manager do not see what happens before and after school or when she is very anxious. She has a lot of anxiety about performing well and being liked/admired by others. In the safety of her home, she has been literally falling apart with fear, anger, or whatever is driving her to behave this way. I am so sad to see her so miserable and want to help. I also want to ensure that she find resources that can help her. That's where I'm asking you guys for help! Where can I turn? I called a center that deals with autism, disabilities, and mental retardation. They contract out services but also observe and test when it's deemed appropriate. A specialist is going to come next week to our home to talk to us and observe dd. I filled out a questionnaire for them as well. They will decide whether or not what we're dealing with warrants testing. I don't know what else to do and feel a little lost, since no one seems to have any idea what exactly the problem might be. DD has characteristics of many things but full qualities of none.

Any advice and input appreciated.


Follow-Up Postings:

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RE: Those who have experience with special needs children,

Hi Seeking -

I can see why you're so concerned, and I know several other parents who are or have been in similar circumstances. (As you may remember, I have an 11-year old who is on the autism spectrum, and for several years was the leader of a local support group for parents of autistic children.)

It sounds to me like you disagree with the school's conclusion that she no longer qualifies as a student with a disability. Will she transition to a 504 plan? Not as good, certainly, but much better than nothing. And are YOU sure she no longer qualifies? By that, I mean that you, personally, have read and thoroughly understand your state's interpretation of the law in this area. I know what the school "told you" -- but have you been at this long enough to know that may not be quite correct?... If you don't know for sure, I'd first call a lawyer to GET sure one way or the other. (I'm not suggesting a lawsuit Forum Members - just knowledgable legal advice. This is a key, key point.) You know the proper procedures for asking for an Independent Evaluation if you don't agree with the school's conclusions? And have you tried that? (Don't just get one - the school can ignore it if they don't like the conclusions.)

Another strategy that might be very helpful is to invite someone from the school over to your house to observe your daughter's meltdowns first hand. They sound pretty severe, and pretty consistent with something autism-spectrum. I'm guessing it's probably a release of the day's accumulated stresses and finally "letting out" all of the things she has been bottling inside all day. And if so, it means she's not coping quite as well as the school thinks she is. If the school agrees to a visit, ask them to send someone she doesn't know (so whe won't hold it together until they leave) and plan to just casually chat with that person as if she were a girlfriend coming over for coffee. Structure the kind of situation that will result in a meltdown so this person can see it. It's amazing sometimes, the difference between our kids' behaviors in different situations! If they won't agree to a home visit, or her meltdowns are relatively infrequent, you may want to 'nanny cam' a few and call another IEP meeting to go over it.

One of the most challenging aspects for parents of high functioning kids is that the schools focus so much on the academics. For kids whose area of disability is primarily social and perceptual, this frequently leads the schools to conclude they don't have disabilities at all. They have no trouble accepting that my son's behaviors are a result of his disability, but react very differently when other kids with the same disability who are academically appropriate act the same way... I know a LOT of very bright kids who are still on the autism spectrum! In some ways, their intelligence seems to make things harder for them, because they just don't get the 'slack' less able kids get.

Have you ruled out Asperger's Syndrome (AS) and Disorder of Sensory Integration (DSI)? I know she won't be a perfect fit for AS since her social skills have improved so much, but many of her behaviors are very consistent with it. A DSI diagnosis can probably get you a 504, which may be enough to get the help she'll need. Or, therapy for DSI might really help her learn to cope better.

I guess all of my ramblings boil down to this: Know your rights and the bureaucratic procedures to follow, and get an advocate or lawyer involved if you feel you need one. You know the stakes...


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RE: Those who have experience with special needs children,

I don't know anything, but have you considered filming her meltdowns? You can do a 'hidden camera' kind of thing. You mentioned that nobody that counts as far as support goes really sees what is going on. Perhaps a video would help.


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RE: Those who have experience with special needs children,

You may think this is completely beside the point, but I must ask whether she is eating a good lunch. Two of my kids had massive meltdowns after school many days because they are hypoglycemic and did not eat much during the school day, despite my efforts. They are both "normally functioning" kids-- I'm sorry if this is not the correct terminology-- and it took quite some time to get this under control. The school doesn't offer a very conducive atmosphere to eating lunch, imo, and for those who are a little nervous as mine were, very little was eaten. I have been frustrated over the years by the fact that pediatricians do no warn new parents of this possibility.


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RE: Those who have experience with special needs children,

Wow, so much great information! Sweeby, I can't thank you enough for your wonderful post. I copied it and will be using it as a guideline. I'm sorry to say I am very much in the dark as to what my rights are etc. We took dd to an audiologist and to the special needs people at her preschool, but other than that, no formal testing has ever been done and no one with the credentials to diagnose anything has ever seen her. We have repeatedly asked about it and been told she doesn't need to be tested, though her autism playgroup teacher disagrees. Unfortunately, that teacher has not been willing to put her thoughts into writing for us. I don't really know where to turn. I understand that according to the strictures of the special ed code, she does not really qualify, but it seems apparent to me that she needs support services of some type. I am going to review the code and see if I can determine whether or not there is an area that addresses her issues.

If not covered under special ed, where do you go if you have neuro-behavioral issues? And how do they determine whether or not they warrant services? I know there are places we can take her for independent testing, but what good does that do? I really feel the school needs to be on board with whatever support system we manage to find for her and it would be even better if there was something written into an IEP or something of that nature so we could have it to fall back on in the future, should problems arise that impair her learning. I can't help but worry that it will be down the road that our largest challenges will occur, as the pressure on her increases, and we will not have any recourse.

You know the proper procedures for asking for an Independent Evaluation if you don't agree with the school's conclusions? And have you tried that? (Don't just get one - the school can ignore it if they don't like the conclusions.) No, I don't. The program she is now in is a county one and they are supposed to observe her at school and then meet with us twice a semester to discuss how things are going. This meeting is supposed to include the teacher, county case manager, a school administrator, parents and I am not sure who else. So far, no meetings and I can't get the case manager to return my phone calls. I've been to her office twice in the last week and she was out both times. This is written in her IEP, btw. Thank you for arming me with a specific thing to ask for!

They want to completely remove her from special ed. I don't know WHAT program she needs; if special ed is not the appropriate one, then why can't someone direct me to an agency/program that is? Surely there are other children with neuro-behavioral problems and presumably there are people who can help them, ideally in conjunction with the school. I'm simply running into brick walls wherever I turn.

weed, you and sweeby have a great idea about filming dd. I have thought about it, too, but your reminders have made me think that now is an ideal time to set it up.

sjerin, thank you so much for bringing up the subject of lunch. Although in my dd's case it isn't the problem, I can really grasp how important it is and will make every effort to keep her on track nutritionally. I send her lunch every day and she's still at the age where she eats what I give her and is happy. Her anxiety doesn't seem to interfere with her appetite :)

I appreciate so much that you guys took the time to answer me. I know my posts are long-winded and tedious! Brevity has never been my strong suit.


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RE: Those who have experience with special needs children,

Just have to say one more thing, which is a reiteration of what sweetby said. Even if it's not in your nature, you've GOT to be firm, pushy and possibly even nasty if it comes to that, with the school system and/or county. Unfortunately, the schools now seem to try and put off all but the most obviously in need, hoping that the family will turn to private therapies. Bottom line = $$ the districts are required to spend. I have a few friends who have learned how to work around the system; it takes perserverance and assertiveness to get what you need and I very much wish you well in your quest. Don't take "No" for an answer! And I think you're very smart to be searching for answers while your daughter is young, when therapies are the most helpful. Good luck!


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RE: Those who have experience with special needs children,

Like I said, sometimes, it's the highest functioning kids that are the trickiest. The schools keep wanting to pronounce them 'cured' and force them to 'fit the system.'

Some schools are wonderful, and bend over backwards to meet the unique needs of each special child. But some others, unfortunately, see special ed. as a costly and inconvenient legal necessity, and work from a perspective that is school-centered rather than child-centered. ("Here are our programs - you're in this one." or worse "We don't have a program like that - sorry.")

Special Ed. procedures, though governed by Federal Law, do vary from state to state with judicial rulings and state laws, so I'm going to strongly suggest you find someone in CA who can help you with issues specific to your state -- either a special ed. attorney or a trained parent advocate. (your "expert") Please - get one. The center you called for testing may know of someone good. If not, call the ARC or your local CAN or FEAT chapter.

There are also classes and workshops you can attend (recommended), books you can buy and web sites you can visit (Wrightslaw - incredible resource) to learn the laws and your rights. As the mother of a child with special needs, you will need to learn this stuff. Whether you have time right now or not, I can't say. The school's going to try to wrap all this stuff up before year end and get your DD "off their books"-- and you have to stop them. It will be much harder to 're-qualify' her now that she's doing so well than it will be to 'keep' her qualified until you agree she no longer needs any help.

I'm linking to the Wrightslaw site, generally regarded as The Best site for special education and IDEA information. The have some books and classes for sale, but most of what you'll need (maybe all?) is available for free on the Internet. Budget a few hours a night for a week or two to go over it, the read the key parts again and again until you know them cold. Your child's education may depend on it.

Here is a link that might be useful: Wrightslaw -- Special Ed 101


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RE: Those who have experience with special needs children,

Seeking, I've been thinking about your post and the best advice to give. It's tough because her symptoms are occurring at home, even though they are caused by the stress of being "good" at school. She only qualifies for Sped if two things occur: 1) she has a covered disability; and 2) that disability is affecting her performance at school. Right now, it seems the second element is missing, unless there is something the school is not telling you.

You have a lot to think about and balance in the coming months. The biggest decision is whether to fight the school at this point, or handle things privately until such a time as she starts struggling at school (often when things get more difficult academically/socially). I will tell you that under no circumstances should you trust that the school system is going to make the right decisions with regard to your daughter on their own. I might get blasted for that, but it's the cold hard truth. They have a bottom line for their budget and special ed is expensive. They are highly motivated to move kids out of the program. I am shocked at some of the things that administrators have told me to my face that are clear violations of the law, yet they do it unblinkingly, knowing I'm a lawyer. The things I'm discovering years later that happened behind my back are even more shocking. So put any inkling of trust aside and approach this knowing you are the best advocate for your daughter.

If you decide to fight now, there are steps you should take right away. First, was the decision to remove DD from Sped made during a PPT? How long ago? If it was, it might be good to get it in writing that you disagree with the decision and that you believe your daughter has deficits that the school had failed to identify. You can request what is called an Independent Educational Evaluation ("IEE"), so long as you disagree (in writing) with their evaluations. Under the law, they are required to pay for this evaluation unless they take you to due process. Most schools would rather pay for the evaluation or try to settle by offering to pay half.

The type of evaluation I think you should request if you go this route is called a neuropsychological evaluation, performed by a licensed neuropsychologist (not just an educational consultant or educational psychologist). A neuropsychologist will look at it from a more clinical perspective.

The key here is to choose a good neuropsychologist. Like any profession, all are NOT created equal. As a general rule, don't use the one recommended by the school. They are usually recommended by the school for reasons that benefit the school. In our case, our school was fond of recommending doctors who were big believers in outdated Freudian nonsense wherein everything is conveniently blamed on the parents. So do some independent research and interviews if you decide to go this route.

Once the neuropsych eval is done, you can call another PPT and try to get the school on board with the recommendations. However, if her educational performance is not suffering, the best you can hope for is probably a 504 plan. Accommodations can be made through a 504, but generally not many services are offered. Perhaps they will agree to provide a social skills group or something along those lines.

The alternative route to go is to handle things privately for now. This could make sense, mainly because it might be best to save the big guns re: duking it out with the school until she is a little older and easier to fully evaluate. Have you considered private talk therapy? You said it seemed to work before. You could try bringing her to a neuropsychologist privately, but their evals tend to be very costly. It's possible your medical insurance would cover it - - maybe discuss it with your pediatrician?

You could also try a child psychiatrist, but again, you would have to be extremely careful in selecting someone with expertise. I fear with your DD's symptoms, she could be diagnosed with an anxiety disorder and they might prescribe antidepressants, which I would caution against using with any child. I am not against medication, as many kids with ADHD, bipolar, depression, etc. benefit from medication. However, antidepressants are a scary thing when used with kids and doctors are very quick to hand them out as if they are harmless. Whatever else you do, please don't go down that road without doing lots of research into the potential dangers (suicidality, increased rages, violence, etc.).

If you decide to get a neuropsych eval, I would speak with parents of other special ed kids to find out who they used and whether they were happy with the results. I would not rely on a rec from a pediatrician, as this is not their specialty. Another good resource is an attorney who specializes in representing parents in special ed cases. They usually know the best neuropsychologists to use.

Good luck with all of this - - you have a long road ahead dealing with the school system. Keep good records of everything now. I curse myself for the things I threw away, not knowing I would someday need them.

Keep us posted!


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RE: Those who have experience with special needs children,

I searched the web with "special ed advocate" and came up with these sites. They seem to have some usefull information.

www.wrightslaw.com
www.specialedadvocate.com
www.afase.com
www.fape.org
http://school.familyeducation.com/special-education/education-and-state/34580.html

We held our son back in first grade. His school/teachers are very good but they never recommend that a child be held back. We had to request it and were made to feel a bit guilty about it by the principal. Two years later, we do not regret our decision.

Do not let others tell you what your child needs. I don't know how to say this nicely, but you have to get some balls and develop thick skin. If you think your daughter needs help, get an advocate and pursue all options ... don't give up easily and don't take no for an answer. Your daughter is still young and this is the perfect time for her to get help.


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RE: Those who have experience with special needs children,

Paigect said:

"I will tell you that under no circumstances should you trust that the school system is going to make the right decisions with regard to your daughter on their own. I might get blasted for that, but it's the cold hard truth. They have a bottom line for their budget and special ed is expensive. They are highly motivated to move kids out of the program."

Paige, that is exactly how I feel. My DH's mother was a teacher for 30 yrs and his SIL still is. This topic wil quickly starts a "fight" between DH and I!! He sees my distrust of teachers/admin as a direct attack on his mother.


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RE: Those who have experience with special needs children,

Thank you, thank you, thank you. Your advice, experience, and suggestions are invaluable.

I totally understand the feelings about school systems and the fact that your child's best interests are not necessarily at the forefront of their recommendations. I know this quite well, as dh and I are both teachers, so we know first-hand how schools and districts operate.

This is going to sound ridiculous, but my dad has a doctorate in education, his focus being special ed, and is quite renowned in the field. He has worked on national panels and written the special ed codes for several states, and here I am. Ironic, eh? Unfortunately, he is not in a position right now to give us advice and guidance :(

It's tricky, because my dd appears completely normal 97% of the time (though it was very evident that there was something wrong when she was little--created her own language because she couldn't hear sounds correctly; avoided all social contact outside of immediate family; immersed herself in music and lived in her own little world). By the time she was 4, though, much of that had diminished to the point where it wasn't noticeable to most. By the time she started school, she looked like a typical happy, funny, friendly kid. Even dh and I will begin to think we've made a mountain out of molehill and then a spate of behavior like we're currently experiencing surfaces. Is it enough to worry about? Should we watch and wait? Should we insist on testing, take her to a psychologist, or will that kind of action end up being counter-productive? etc etc etc. We never seem to reach any firm conclusions and we're afraid to interfere with the enormous successes she has attained. That's why I was very interested in your comments, paige, about private avenues. I honestly think that it will take very little to help dd, but the trick is that it needs to come from outside. What I mean by that is that it doesn't work if it is initiated by us at home. She needs a support person she can lean on once in a while, when she's feeling unsure or anxious--just a big buddy kind of person, not her teacher or family member, who can help her negotiate things like a major change in routine. That person doesn't have to DO anything except be a friend (adult). As I mentioned before, she had two of those this year but both stopped at the semester.

In most ways the school has been great. They're the ones who have come up with the things that have helped dd so far. The county (special ed) people have done little, though they did get the school started on thinking of ways to help dd. Other than that, out of sight, out of mind. The few observations they've made just corroborate that dd is doing wonderfully. And she is, in so many ways, but I think she can only handle all of her coping strategies for so long before she sort of collapses. She does well socially and academically, but part of the reason is because she's so incredibly bright that she has learned ways around her problem areas. For instance, she usually cannot follow oral directions, but has learned to look around and see what others are doing and she'll do it, too. She is an adept imitator and can memorize entire movies and so on, including voice inflections and accents. She has a very hard time with motor skills so she dreads writing (and art) but she uses such exceptional vocabulary that her handwriting is forgiven. She follows directions to the letter so she endears herself to teachers and station leaders, who then allow her more leeway, though she should get leeway anyway IMO since these are supposedly the result of processing disorders. She has great abstract thinking skills and a phenomenal memory. All of those things aid her immensely but apparently are not enough to give her emotional equilibrium. She worries a great deal about letting people down, not meeting others' expectations, bothering others, not being nice enough, not doing everything the teacher (or other authority figure) asks her to do. I think she feels she hasn't lived up to people's expectations, which of course is primarily her own expectations of herself, and feels both guilty and angry about it.

Thanks for listening. I don't mean to keep going on and on but it seems to pop out as I'm writing "thank you," LOL.


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RE: Those who have experience with special needs children,

seekingadvice,

It sounds to me like your very bright daughter is spending a great deal of energy during the school day compensating for her neurological deficits, from what you have just written. I think that if she gets whatever support and accommodations that she needs at school, that might lessen the build up of pressure and anxiety that she brings home.

I, too, am a teacher and from a family of teachers, and have had a son with high end special needs, some of which were dismissed by the system over the years, or given lip service on an IEP without actual implementation in the classroom.

A teacher friend of mine in town hired an educational advocate to go to the school meetings and push for what her son with high end Aspberger's needed - and she ended up with more accommodations and attention for her son than others received, of that I feel quite certain.

You mentioned handwriting. That should definitely qualify for Occupational Therapy and accommodations. But I would also take her for a private evaluation as well, because the school may just have her learn keyboarding for computer use, but there will still be many occasions where she will need to use handwriting, and she should receive all that's available to actually help with her hand control.

In addition to filming her meltdowns, you might keep a journal as well, and show it to her pediatrician.

I think putting all of your concerns in writing to team members with a check list and dating of when any of them are met might be helpful for them as well as yourself.

Wishing you and your daughter the best on your journey!


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RE: Those who have experience with special needs children,

Seeking, I wanted to add something that someone once told me. It sort of became my mantra - that is, trust your gut and go with your instinct. Noone knows a child better than their mom (or dad).

This question has been nagging at me since the last time we discussed special ed here. Has your DD had a hearing evaluation with an otolaryngologist (ent) with experience in communication/processing disorders (usually at large teaching hospitals)? I can't get into the reason I'm asking, but many times there are physiological impairments that are missed.


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RE: Those who have experience with special needs children,

Such great advice! And all from parents who have been there. I'll second ALL of it! ;-)

The one suggestion that I haven't heard though is to get involved with a parent support group in your area. Even if it isn't for the 'right' disability, there are so many issues in common, and you will learn so much, not to mention the benefits of just plain ol' support from other parents who really get it. Maybe an Asperger's support group?

For writing, check out a program called "Handwriting Without Tears" -- an incredible resource. My son's fine motor skills are consistently evaluated in the bottom 1-2%, yet 6 months after starting HWT, his printing was evaluated in the top 25%ile. He's still slow, but to this day (4 years later), gets regular compliments on his beautiful writing. (And the pride he feels in doing something well is beautiful to see.)


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RE: Those who have experience with special needs children,

seeking, you seem to be getting good, sound, very caring advice from forum members who know what's what.

I do not have experience with special needs situations, but I'd like to address the topic of evaluations that paigect brought up- and I'd appreciate it if she would give me her take on it.

Paige wrote, "You can request what is called an Independent Educational Evaluation ("IEE"), so long as you disagree (in writing) with their evaluations. Under the law, they are required to pay for this evaluation unless they take you to due process. Most schools would rather pay for the evaluation or try to settle by offering to pay half."

My concern here is that if the school pays, or pays half, I would think two things could/would happen- first, that they would have the final say in who did the evaluation and second, that the 'evaluation' finished report would be the property of the school that paid for it and not yours.

Is that the case? If so, since the choice of a neuropsychologist might make or break your daughter's chances to qualify for services, I'd pay for the evaluation and not look back.

Best of luck!


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RE: Those who have experience with special needs children,

Seeking...
Though I have no experience with your direct situation with DD, I hear your frustration and confusion much like my own. My DS is struggling at school where they're strongly asserting he's ADHD, yet at home we have very different observations. We have gone through private testing as recommended by the school (also a private one). As a result, we did find some very strong clues to help us make decisions moving forward.

In addition, I found a book called "The Mislabeled Child: How Understanding Your Child's Unique Learning Style Can Open the Doors to Success" by Brock Eide and Fernette Eide. I found it extremely helpful in first gaining an overall understanding of how learning takes place, but also very clear discussion about all types of problems, concrete ways to evaluate them, ways to help, steps to take... all written in layman's terms rather than some of the psycobabble jargon books that seem so common.

For example, on the section on Autism and Autism-like Disorders, the subsections include things like "Autism: What it is and isn't", "Behaviors Associated with Autism... Social impairments, communication impairments, other..." "Conditions that can mimic autism... auditory impairments, visual impairments, language impairments, attention problems, sensory processing disorders"

Then one of my favorite parts of the book is that the authors go on to describe how to help children use their conditions as strengths in moving forward.

I second the recommendations to really look at things like visual and auditory evaluations beyond the standard pediatric eye/ear exams.

The only other advice that I can give is to look at this as a process. There's no magic pill or single solution that we're sometimes led to believe (like Ritalin for ADHD). When I look at DS from a step back, I see all the amazing progress, I see how bright he is, I enjoy watching him learn and absorb and be excited. But if I focus too much on a given day or a given event at school, I get angry and frustrated with not being able to "fix" everything.


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RE: Those who have experience with special needs children,

PecanPie wrote:
"My concern here is that if the school pays, or pays half, I would think two things could/would happen- first, that they would have the final say in who did the evaluation and second, that the 'evaluation' finished report would be the property of the school that paid for it and not yours.
Is that the case? If so, since the choice of a neuropsychologist might make or break your daughter's chances to qualify for services, I'd pay for the evaluation and not look back."

That sounds so logical, doesn't it? Trouble is, the law doesn't work that way...
Paige, please correct me if I'm wrong here, but I'm pretty sure the law is as follows:

- The school has to pay for the evaluation.
If you agree to pay for half, the school is likely to conclude that you don't know your rights under the law.

- The 'IEP Team' which includes the school and the parents have to agree on who will perform the evaluation.
In practice, the school usually has a list of approved providers and the parents can pick from that list.

- I don't know who 'owns' the evaluation, but the parents certainly get a copy of it.

- The service providers may tend to favor the school's point of view.
After all, it's the school who pays them, and the school that sends them clients.

- But, if you get your own private evaluation, you will pay plenty for it. ($1,000 minimum, could easily hit $4-5,000)

- On the positive side, if you pay for the evaluation and don't like what it says, you don't have to share it with the school.

- The schools have to "consider" your private evaluations when forming their conclusions, but they don't have to consider them very much.
(To illustrate: I'll consider dyeing my hair green. OK - I'm done. Not gonna do it.)
That's the trouble with getting your own evaluation, and I've seen it over and over and over.

- Again, in practice, the school will consider an evaluation that they pay for much more seriously, and they'll have trouble defending why they're not implementing its recommendations.


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RE: Those who have experience with special needs children,

Sweeby, your point about the school paying for the service providers is what I was getting at. Certainly the providers on the 'list' know who butters their bread.

What a catch 22.


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RE: Those who have experience with special needs children,

Such great advice here, as usual!

Sweeby, I believe you are mostly correct. The school has to pay for the evaluation OR take you to due process. Agreeing to pay for half is a common settlement technique for both sides to avoid hiring lawyers and going to due process. Personally, I would call their bluff, but it's a case by case thing.

I'm not 100% certain about the list of approved providers. They will have a list, but it should not be an exclusive list. Very likely they will have a list of providers they will not agree to (those who have gotten them in trouble in the past). But they cannot dictate who the provider is, otherwise it would not be an "independent" evaluation. One thing you can consider doing is going outside the immediate area in which you live, where they are less likely to be intimately familiar with the providers and less likely to have a provider worried about repeat business from the local school district. If you provide the name of a non-local provider they are not familiar with, they really won't have much to stand on in denying it.

Sweeby's point about them being more invested in an evaluation they paid for is very important. That is the best reason to go through the process of requesting an IEE from the school. A private evaluation never holds as much credibility in their eyes. So if you can negotiate the IEE process and have the school pay, but still have confidence in the evaluator, it's a good way to go.

One more thing I didn't mention above. It is very important to remember the difference between "she's doing well academically" and "they SAY she's doing well academically." These are two very different things. If all you have to go on are grades and teacher reports, that doesn't tell you, objectively, how she is doing. And the handwriting is a huge red flag. She could have dyspraxia, a disability which, if it is affecting her writing, would make her eligible for special ed services. Hence, the difference between "she does not qualify for special ed" and "they SAY she does not qualify for special ed." Remember, as friendly as some of these people may be, they are not your friends first and foremost. They are trained to stick to the party line and most of them will do that. Trust me, I'm kicking myself five years later for trusting our PPT "team", who by all appearances were a friendly, caring bunch.


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RE: Those who have experience with special needs children,

UPDATE: We had our in-home observation last week. It was performed by the Far Northern Regional Center, which is one of 21 Centers in CA set up to provide services for individuals with developmental disabilities. They coordinate things like testing/evaluation, education, rehab, etc. They are very highly thought of and the school listens to and works with them. They are specialists in autism/autism spectrum disorders.

They got back to me yesterday to let me know that based on their evaluation, they are recommending that dd be sent to UC Davis' Mind Institute for testing/diagnosis. This is huge, because you have to have a substantial "case" in order to warrant that recommendation and the fact that they refer you means that you don't have to pay for it plus you don't have to wait the year or whatever it is to get in to the Mind Institute. We are so relieved. Whichever way it goes with the testing, we feel so good that we are finally getting dd professionally evaluated by a renowned site and that the recommendations we get will be a valuable tool.

FNRC also provides referrals to other resources should it turn out that dd's diagnosis does not make her eligible for their services. For instance, many cases of Asperger's are not covered under FNRC's umbrella and are referred elsewhere. Still, getting guidance and recommendations for what we can do is also a big relief.


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RE: Those who have experience with special needs children,

That's good news Seeking! The Mind Institute is fabulous and they know what they're doing. She will get as accurate a diagnosis there as it's possible to get. I'll cross my fingers that you get in quickly, because I know what those waits are like...

In the meantime, can you get a "stay put" with your school?

And any luck finding an advocate?


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RE: Those who have experience with special needs children,

Excellent news, Seekingadvice. A big step on the journey.

Good luck!


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RE: Those who have experience with special needs children,

Fabulous news! This is really the best possible scenario imo. Good work on your part!


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RE: Those who have experience with special needs children,

sweeby, yes, the county has agreed to wait and not release dd from special ed just yet. FNRC told us we would probably be looking at a couple of months for getting into the testing center, which is good for us since dh and I will both be off work for the summer. Did I mention I went back to work a couple of days a week? I'm a Home and Hospital teacher for the high school district.

DD continues to have ups and downs after school; some days are real meltdown days and some days are good, with most somewhere in between. Yesterday was a bad day. She began screaming at her sisters and hitting one of them for trying to look at the new book she'd just gotten at the Book Fair after school. All they wanted to do was see the cover and she flew into a rage. I punished her by taking her new books away until she could calm down--don't know if that was ok or really stupid on my part. Her reaction was to physically attack me (punch me on my back) and scream "I hate you!" several times. When I whirled around (I'd had my back to her when she did this), she cowered and cried like she thought I was going to hit her. I felt just awful looking at how wretched she was. She hates these rages more than any of us who feel the brunt of it, and I've yet to come up with an effective deterrent. Later, she is miserable and contrite, which is as bad as the rage because she then tries to punish herself.

Dad, thanks so much for your kind words!


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RE: Those who have experience with special needs children,

Seeking,
I am not usually on this side of the forum, so today is the first day I have seen this conversation. I am an attorney and my child has 14 diagnoses from the DSM, so I have been down the path of special ed over the years. I think you have gotten lots of good advice on this forum, and I think it is great that your child will be evaluated at the Mind Institute. I also think that the two most important things people have told you are: (1) you are your child's best advocate and (2) no matter how caring the school personnel are, they are, in this case, on the other side. For many districts, it is a question of how little they can get away with providing, although, of course, that is not federal law. It takes stamina and strength to fight a district that does not want to provide appropriate services, and such districts do not make it easy. What you describe of your daughter doing ok at school and them melting down is not that unusual. For many kids, holding it together during school is so challenging that they just let it out when they get home knowing that their family will continue to love them no matter what. (My child, because of his many issues, acted out at school and at home and I used to pray for the day he would act out only at home.) One book that we liked when our son was younger was The Explosive Child by Ross Greene. I have recommended this book to lots of families with kids with issues, and most of them have found it very helpful. Good luck!


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RE: Those who have experience with special needs children,

Am so pleased to hear how things are progressing, congrats! Hang in there!


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RE: Those who have experience with special needs children,

OOPS!!! Sorry Doc--I called you Dad, LOL! Don't know why that came out!

brachl, thanks so much for your take on this. It is wonderful to hear from those who have been there. I will order the book right away! I hope things are going well with your son.

jubilee, thank you so much!


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RE: Those who have experience with special needs children,

I'm glad to hear that you are going forward with a better source of diagnosis than a school district. Until I read that post I wanted to type this question for you:

Would you allow your school to diagnosis cancer if you suspected it? It's really no different than hoping they'll catch a developmental diagnosis and accurately diagnosis it in it's entirety. As you have found, there are more issues to diagnosis than if she's doing well in school. The at home behavior is just as important.

I feel for the little darling. She's obviously having some great stresses, and I feel for you, because it's hard to watch your child have those stresses and not be able to help them. Congrats to getting on the road to diagnosis. As we have learned with our son, diagnosis is EVERYTHING!! No matter what the answer is, you can't find your path if you don't know which way you're heading.

I did wonder where your pediatrican was in this story. Ours has been a great advocate for our son, and was the first to send us to a neurologist when there was a chance of a brain issue with Jesse. (They thought he might have a leuko-dystrophy). Our neurological exam was amazing, and took a couple of days to complete. We were lucky to receive a negative answer (leuko-dystrophy is fatal) but without our ped pushing, we might have had more difficulty getting a quick answer. Having a child with a rare disease, I can understand the stress of the medical world, but I must say that I have a ped who is on our side, even when we were chasing the most bizzare possible issues, he was always there for us.


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RE: Those who have experience with special needs children,

igloo, you raise a very interesting point. Our pediatrician kept telling me there was nothing to worry about. He said dd could not be autistic because she was too social. In the early days, when she wasn't social at all, he said she could not be autistic because she looked him in the eye and answered a question. At that time I jumped at the notion that it was just a phase and didn't push it. This doctor, btw, is touted as a local expert on early autism. He is fabulous in all other ways but I really think he was wrong to dissuade us from looking into things further.

And you're absolutely right about waiting for the school to diagnose something or accepting their word for what the problems may be. The difficulty is in figuring out what to do when no one seems able to tell you any options and instead keeps telling you everything is fine. I am lucky enough to be able to investigate things and advocate for what is needed, but there are so many kids who do not have that advantage. In addition, we can and will spend money to help dd with this; how many kids must there be who are not so fortunate?

igloo, what was Jesse's diagnosis? How did you get it, if you don't mind my asking these personal questions? I hope things are going well for you.


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RE: Those who have experience with special needs children,

Is this a test to see if I can do a short version? heh heh

Our little story:

At the ripe old age of 41 I was out shopping for a boat to sail the seven seas with my dh when I got a terrible attack of stomach flu....or salmonella....and some odd hip pains...Now being 41, with no possibility of having children (per a doctor many years earlier) it didn't cross my mind that my stomach flu might be something else...

Ten days later while I was researching what kind of rare stomach cancer I was probably dying from, I found that every website on google was for pregnancy when I typed in my symptoms... the next day in the doctors office I found out I was five months along (no wonder that diet wasn't working). I'd been on long term birth control so I had sort of missed that "main" symptom. Our little miracle then decided to come early (seven weeks) so I was basically pregnant for a couple of months.

Jesse was 3lbs 15oz when he was born, and aside from being too weak to eat on his own, he seemed to be a basically healthy boy. Two weeks in NICU and he came home at 4lbs to his shocked parents. From there things went downhill. Jesse never ate enough, and he threw up constantly, not a little spit up, but volumes of fluid that would force you to change your outfit several times a day. To complicate things he had wet stools 12 to 20 times a day. We saw doctor after doctor and literally traveled the US trying to find out what was wrong with our little guy. He was chronic fail to thrive for 11 months and is still off and on the FTT list. We were given many fatal and rare disease diagnoses but every time we would travel to the specialist for that disease, it would turn out that he didn't have it and we'd be sent to another specialist for another disease. He's been in six different hospitals, all in different states and has stayed for testing and care over a dozen times.

We did this for eleven months when we finally went to our final doctor in Cincinnati. We didn't have the rare disease we went there for...but they asked if we would stay and given that I was out of hope, I said yes. It turns out that Jesse is what they call a "Happy to Starve" baby. In very, very rare cases, babies will find eating so unpleasant when they are small that they will learn to live without food (well until they starve to death anyhoo). Some connection between the brain and the stomach isn't wired correctly and they just never know they're hungry. Left on their own, they really are happy to starve until they fade away forever. This often happens with seniors in their very last stages of life when they just quit eating and normally die very soon afterwards.

There is no known cure, but if they do live, they always come out of this by the time they're four or five years old. In the old days they starved to death, but today we can obviously put a feeding tube in them and force them to eat.

When we found out what was wrong we had to change our lives to accommodate his. I told my employer to give my job away and will be a stay at home mom for a few years (which at my age isn't easy!). To avoid the feeding tube, we feed him every two hours 24/7. So I'm tired always tired, but he's worth it so we keep it up.

It's such a rare thing that there is no actual diagnosis. It's an orphan syndrome (meaning very rare). In addition, Jesse also had another rare abdominal scrotal hydrocele as well when he was just a few months old. There have been less than 400 studied since the 1850's. My pediatrician has quit saying "well that reaction is so rare it's unlikely...." Now he says, ummm we had best watch Jesse for everything! He was a HUGE help in finding diagnosis for us which is why I asked about yours. We did have a few doctors along the way that said "he's fine, it's you" because he always looked like he was ok. I remember the neurologist coming in to meet us for the first time. He said, on paper I expected to see a child who was obviously dying, but in person your son looks quite good. Fortunately we found a doctor who knows that because Jesse smiles and is social, it does not mean he's not in danger. One of the problems with starvation is that your immune system shuts down. Jesse's is always a huge concern. The typical cold always lands us in the hospital and sets all eating milestones we've made back to the starting gate again.

I don't mind the personal questions at all. When you see us on Mystery Diagnosis you can see the full version compressed into 7 mins...I can't wait to see how to do that! It seems I can't do a short version at all!


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RE: Those who have experience with special needs children,

Oh wow, igloo, what a story!! I am in awe of you and your dh, but of course I also understand that you do what you must. I learned this from a friend whose son had a very rare disease that eventually took his life. When I told her I didn't know how she managed, she looked at me in surprise and told me that we all do what we have to in the circumstances. Nevertheless, I think it's incredible :)

How old is Jesse now? I take it he has not yet reached 5 or the age at which the HTS goes away?

I have to tell you I laughed like crazy at your description of researching your symptoms to see what disease was taking your life. I did the same thing, to a lesser extent. I told my doctor I had a terrible kidney stone. Much to my shock it turned out I was pg and Alex was born when I was 44. Actually, though, I DID have a kidney stone as well and opted for surgical removal of the stone when I was 2 months pg, figuring the less time I had to get used to the idea of pregnancy the better in case I lost the pg as a result. My little fighter hung on through the surgery and round after round of stones and a last-minute placental abruption. I don't know if any/all of these things contributed to her difficulties now but it doesn't matter, does it, since I can't change anything?


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RE: Those who have experience with special needs children,

Igloo -- I agree with seeking - your story is incredible. As I said in my post yesterday, I have a special needs child (mental health, not physical). I also run a program for children with life-threatening illnesses, so I know lots of amazing stories. Yours is definitely up there. I admire your and your DH's strength and wish you two and Jesse all the best.


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RE: Those who have experience with special needs children,

Thanks seek and brachl, but as you know, we all do what we must. People who know us often say we deserve "Mom and Dad of the year" but I always ask back...so what would you do? They'd do just what we have. You do what you have to for your kids.

Jesse is only 16 months so we've a way to go before we're out of the woods yet. Unfortunately that feeding tube thing is probably still going to be a concern since he can't be on a bottle until he's 20...or can he? I could switch from playtex bottles to wine bottles...no one would think he was being a baby then huh?

While our story is somewhat unusual, I always feel blessed after a stay in the hospital. My little guy is a happy, healthy looking wonder. He's a bright red headed monster and normally spends all his hospital time charming nurses. Compare him to another child of his age and you can see how very tiny he is, but on his own, he looks great most of the time. So many of the kids in the wings we're assigned to in hospital (gastric related issues) are so much sicker than my little guy. Those mom's deserve mom of the year awards! My guy is easy compared to many of those kids, and many of them will never get to leave the hospital. I can't imagine how hard that is for a parent.

I applaud any parent with a child with special needs or any sort, but they'd probably say just what I do...we do what we must. I think the real people who need applause are people like brachl who make a choice to help kids in difficult circumstances. It's one thing when it's your child, but to take the time and effort to run a program that enhances the lifes of children with illness is a choice, and one that deserves huge reward!


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RE: Those who have experience with special needs children,

Igloo,
Thanks so much for your kind words. I feel lucky to be able to do something so meaningful. Our kids are great; our parents are great; and our siblings are great. ( Not that they are all wonderful all the time, but they are all great in their own ways.) Your strength of spirit reminds me of a parent of one of our kids. The child is in end-stage kidney failure and needs a transplant. His father has told me several times that he always feels lucky when they go to the hospital because there are so many kids who are worse off than his son. Sadly, last fall one of the kids in my program died, and I was devasted. I was comforted at the funeral by several people who told me that we had given a lot of joy to him in his too-short life. It's a gift to be able to do that.


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RE: Those who have experience with special needs children,

Oh brachl, I can only add a lame ditto to everything igloo said. You really are one of the very special people in this world.


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RE: Those who have experience with special needs children,

Seeking and Igloo,
Thanks so much; you're very kind. Really, I feel lucky to be able to do such meaningful work. I also get to meet lots of wonderful people; there are many in this world with generous spirits and I have had the good fortune to meet many terrific folks through my work. (Of course, it's also great to meet so many nice people through the GW forums.)


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RE: Those who have experience with special needs children,

I didn't read all the posts in between, but saw that you have not had your child tested. I recommend that you have your child tested by a psychologist to see if she has an anxiety disorder--actually do broad range of testing for learning disabilities, etc., that will include testing for an anxiety disorder. If she has a anxiety disorder, then they will probably recommend therapy or medications. I strongly recommend doing the therapy, even though it is more expensive than medication. My son had dsylexia and testing also revealed an anxiety disorder. Kids brains aren't able to properly cope with the frustrations of a learning disability until they are something like 9 or 10. My son would become so frustrated that he would hit himself, etc. He also started sucking his thumb again in 2nd grade and still has scars on his face (now 16) from where he would scratch himself while sucking his thumb. My son underwent a year of play therapy with a child psychiatrist--essentially learning how to fail-- and it made a huge difference in my child's life.
We had my son tested at a major university and it took a whole day--luckily it was covered by insurance. Schools will do testing too, but their testing won't be as complete. The schools around here hate it when you do your own testing, but you need to do what is best for your child and not what is best for the school and its own agenda. Best wishes as you deal with this very difficult issue.


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RE: Those who have experience with special needs children,

Thank you for sharing your experience, Carolyn! It very well may be that my dd does have an anxiety disorder. I mentioned a few posts up that we just got the OK to have her thoroughly tested at UC Davis' Mind Institute, which is very well known and respected. Hopefully we'll get a good idea of how to proceed from there.

I do think that your ds sounds very similar to my dd. I will keep the play therapy in mind. She has done a limited type of this already and it helped immensely, but it was not the very professional kind you had for your son and if we go this route in the future I will look for something of the type you describe.


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RE: Those who have experience with special needs children,

Seekingadvice, I'm glad to hear that you are getting your daughter tested. If your dd is like my son, you will have some difficult times ahead until she learns to cope. When my son was in 2nd and 3rd grade, I would hold my sons hands (I mean restrain them, not affectionate hand holding) while he studied because he would start hitting himself, etc. The hitting is part of a wall of frustration and I would hold his hands to help him get past that wall each evening so he could regain his focus and be able to learn. My DH couldn't do that and he would let my son stop at the wall of frustration with a lot of yelling and frustration on my DH's part too, so I'm the one who helped my son. Giving up just reinforces the notion that they can't do it, and it's important that kids with learning disabilities that can be overcome never think that they can't do it. Of course, you can't overcome some learning disabilities, so then the approach is different with those. It seemed hopeless when my son was in 3rd grade, but he is now a high school honor student and gets by on his own with just a little help from me. Another thing that helped me, but might not be available for your dd's particular disability, is that I took a 60 hour class on teaching kids with dyslexia to read. The class was a college continuing education class for elementary school special ed and reading teachers--being a continuing education class, it was a weekend class so teachers (and I) could take it during the school year without missing work. It really helped me to understand my son's disability, my son's frustration (they had videos of adults who described their experiences growing up with dyslexia that made me and everyone else in the class cry) and to better understand how I could help my son. If you get a diagnosis for your daughter, you may want to see if you can find a similar class pertaining to her disability. Good luck.


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RE: Those who have experience with special needs children,

seeking, I'm so happy your daughter is going to an excellent place for a full evaluation. I'm sure you'll come away with new & deeper insight into her behavior.

Anxiety disorders, by the way, frequently go hand in hand with some learning disorders. People with ADD/ADHD & autism spectrum disorders are especially prone to anxiety disorders. My 23-year-old son has a learning disability which may or may not be on the autism spectrum (Nonverbal Learning Disorder), but his biggest problems stem from his anxiety disorders. I now realize that he's had an anxiety disorder from the time he was a small child. We just always coped with it without knowing what we were dealing with. Like your daughter, he had afterschool meltdowns from preschool up until fifth grade.


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RE: Those who have experience with special needs children,

awm, I was so intrigued by NLD, as it describes my daughter so closely EXCEPT that the key element--needs verbal cues and can't follow nonverbal instruction--is exactly the opposite. All of the behaviors and characteristics are my dd.

I am soooooo upset today. We are seeing a progressive decay in dd's ability to hold things under control. The rage episodes are increasing in frequency and beginning to spill over into areas outside of the after-school, only-around-the-family kind. We had to cance a playdate because she lost it when her friend was here. It has been almost non-stop on the weekends, which we've never seen before. Yesterday I ended the day in tears and wondering how I could be such a bad parent. DH was gone and dd was unrelenting in her anger, aggression, accusations and kept "running away" by heading up the road (not at all safe where we live) and doing things she knows are absolutely forbidden (climbing the fence to get to the creek). She keeps telling me it's all my fault (me, the mom) and I'm the stupidest idiot ever and she hates me etc etc. She got out the phone when I wasn't looking and just began calling people on my phone list because she "wanted a playdate." She tried calling my mom and her big sister, both long distance. She got her sister (my oldest dd) but immediately told her she didn't feel like talking. My littlest dd, one of my 4-year-olds, began throwing tantrums and acting out in a similar manner. I almost couldn't hold it together and by the time dh got home, I had to retire to my room with a book just to escape thinking about it all. After a while, dd came into bed with me and said, "Mommy, I have so many Angries in my heart. I'm so sorry." We cuddled up and went to sleep, but I'm feeling so down today. I don't even know what to do now. Wait for the testing? Try to get in to see someone?


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RE: Those who have experience with special needs children,

Oh gosh, Seeking . . .I am so sorry for all that you're going through, but I guess, more importantly, what your little daughter is going through . . . she must be just miserable inside to have her actions come out this way. I don't know, but I think if this were me, that I'd seek out some kind of help REALLY SOON . . . a child therapist . . family therapist . . . someone she can just talk to . . . and YOU can talk to . . . There definitely is something going on, and if it's stepping up in intensity . . wow, just so hard.
SOMETHING needs to be "fixed" . . or dealt with. You know that, of course, but without a label on it all, kind of hard to fix. My heart just goes out to you . . . I do hope you can find some resolution soon, or at least find someone to talk to who will really listen to what's going on. There is a reason for this behavior . . .
Sounds like she's really thrashing around for attention, even negative attention, for whatever reason. Just that it's picking up in intensity . . . kind of scary, I would think, because you just don't know what will be next. The fact that she has remorse, and is sorry for her actions, shows that she's so aware of her acting out, but I guess just can't help it. Oh gosh . . . I hope that you can find a really kind, compassionate professional who will really HEAR what you're saying, and what your daughter is saying . . . Bless her heart, and yours too . . .

Will be keeping you and yours in my thoughts . . .

C.


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RE: Those who have experience with special needs children,

Seeking, my heart breaks for you as I read this. I went through some very similar things with DS. Still do on occasion. I do agree with Chris that you should seek out a child play therapist or art therapist to help you sort through this while you wait for the evaluation.

Having read back through this post I feel I should ask - - have you thought about the possibility of a mood disorder, or early onset bipolar? I know that sounds scary, but don't completely discount it before researching it and having an evaluation, especially if you have a family history of mental illness or alcoholism (bipolar and alcoholism are often comorbid and one can mask the other). I'm not trying to freak you out, just putting another idea out there. There is lots of information on the internet about childhood bipolar if you want to search it.

If you end up going to a medical professional to get help before the evaluation, whatever you do, please do considerable research before letting them prescribe antidepressants or stimulants for her. Doctors jump to these medication too easily and they can have terrible effects on children. BTDT. I'm not one of those anti-psychiatry people - - my DS has a psychiatrist. It's just the use of those particular meds in children with symptoms like your DDs that, IME, is very scary. I would be happy to share more about this with you if it comes to this point.

Hang in there, and remember that it's not you. You're doing all of the right things.


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RE: Those who have experience with special needs children,

Oh seeking...I really feel for you. What a tough time your family is going through, and I'm sure your daughter is miserable too without really knowing why. If she's deteriorating, I'd get her in to see someone now. Keep your appointment with UC Davis, but try to get help for the short term.

Just to present another point of view, meds helped relieve my son from a lot of misery. There were some side effects that he didn't enjoy (he felt lethargic), but the benefits outweighed the disadvantages. No one likes the idea of medicating one's own child, and yes, be alert to side effects. But please be open to the idea that meds might not only be beneficial, but that your daughter could be happier on them. Each person is different.

Re NLD: as with any LD, most people don't exhibit every symptom. My son lacks two of the hallmark NLD traits: he doesn't interpret language literally and is actually quite good at math. But he has enough of the other symptoms to make the NLD diagnosis a likely fit. He has a few Asperger traits, but too mildly to be classified as an Aspie.


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RE: Those who have experience with special needs children,

AWM, I really wasn't bashing meds, just the use of certain types of meds for children exhibiting certain types of behaviors. I know meds can be very beneficial to some kids, mine included. My DS takes mood stabilizers now with great results. I was just sharing my experience that with a child who has outbursts such as those described by Seeking, using antidepressants or stimulants can be a very dangerous thing.

It's just that doctors are much quicker to diagnose ADHD or depression and prescribe an antidepressant or stimulant (without knowing the risks) than they are to recognize childhood bipolar and prescribe the proper medication for that illness, which is generally a mood stabilizer. Kids who have bipolar or even a predisposition for it can really be sent off the deep end by the use of antidepressants or stimulants. What my DS went through is something I would not wish on anyone. I will not go into detail here, but antidepressants made him so out of control, and so not himself. And I know many other families this happened to as well (through a support group).

DS has been medicated properly for several years now and is doing very well. You would never know if you didn't know his history. But the damage caused him by antidepressants lasted a long time and had permanent repercussions and I feel I need to warn anyone who might be seeking psych care for their child. Sometimes we have no choice but to use meds as the child cannot function on any kind of level without them. But we need to educate ourselves first, that's all I'm saying. Sorry if I offended.

And Seeking, I'm not saying I think your daughter has bipolar. Just that it could be a possibility and it's worth investigating.


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RE: Those who have experience with special needs children,

Seeking,
I am so sorry to learn that your DD is struggling more and more. Having been there, I know how hard it is for all of you. Please realize this has nothing to do with you -- your daughter has something going on - but it does not reflect at all on you or your parenting skills. While I think it is wonderful that your daughter will be evaluated at the Mind Institute, you might want to consider having her evaluated by a local psychologist. Over the years my son has been evaluated by many different professionals both in my hometown and away, and each evaluation has added pieces to the puzzle that is my son. I personally think you should be open-minded about medications. I think there is no question that some medications, particularly stimulants, are over-prescribed, but I also think that some kids really need medication to let them be their best selves. Good luck! Please feel free to e-mail me directly if you want to. I have a major special event this weekend for the nonprofit I run, so I don't think I'll be on GW much this week.


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RE: Those who have experience with special needs children,

Thanks, you guys. It's funny you brought up early-onset bipolar, paige, because I was just researching that today. I must honestly admit that it's one of my biggest fears, probably way out of proportion to the reality but something I've balked at considering. My mom is bipolar and I had a pretty hellish childhood at times because it was not addressed and you did not discuss such things back then. It was a family skeleton that we pretended did not jump out of the closet on a regular basis. My mother hallucinated and had a very altered reality. For reasons unknown to me at the time, she focused most of her negative energy on me (I had an older sister and a younger brother). I was often the target of very bizarre rituals and punishments. Mom did not get therapy and medical help until I was almost 30, and I have this huge fear about bipolar disorder which is maybe fueled by my terror that it will mean the same thing it did with my mom--I will be unwanted and once again become someone's target.

I should tell you that my oldest dd, who is now 24, struggled with *something* that I never had the courage to face. I denied that there could be anything seriously wrong since she was so beautiful, smart, and friendly. Then came the suicide attempt at 16. She spent 2 days in the hospital and another week whisked off to a mental health facility where I was not allowed to see her more than 1 hour a day. It was 2 hours away and I'd unknowingly signed away my parental rights at the hospital when I was distraught and they'd told me she needed this help. They put her on heavy medications and it was a long struggle to get out of that swamp. She is doing great now, does not take any meds and works, travels, and socializes, but it was a long haul for her learning to deal with her depression and anxiety disorders. I have such guilt that I refused to look closely at what was happening and will do anything to make sure history doesn't repeat itself.

I also feel so guilty at the notion that I've passed along these "bad" genes to my children.

I have some names and numbers I got today, so tomorrow I'll be making calls. Thanks again to everyone and I may email you for further information.

Oh, just an ironic little note about my family background: my dad has a doctorate in psychology and my mom has a masters in counseling. She was actually an excellent counselor (though she didn't work during the worst times). She retired after receiving several awards for her tireless efforts as an advocate for the elderly and disabled.


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RE: Those who have experience with special needs children,

seeking --
these children are such a challenge - and I'm sure you, just like most parents I know, did the best under trying circumstances -- it's wonderful that your oldest daughter is doing so well -- that in itself should help you realize that your younger daughter can be helped and get to a better place-- there are lots of caring and thoughtful mental health professionals who work with kids -- and they can make a tremendous difference in children's lives -- go forward armed with the strength that your love and commitment to your child will help you find the assistance she needs


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RE: Those who have experience with special needs children,

Hi paigect:
"It's just that doctors are much quicker to diagnose ADHD or depression ..."

Which I think underscores the necessity of having one's child checked out by a good neuropsychologist who will administer a battery of psycho/educational tests in addition to learning about a patient's behavioral history & environment. Many doctors will erroneously diagnose ADHD based on a patient's history alone instead using tests to see if the patient's brain actually has trouble with focus & sustained attention. The neuropsychs I took my children to could recommend types of medications, but can't prescribe them and didn't push for a specific type of meds. To get the medication, my sons had to go through a psychiatist who worked with the neuropsychs and with a team of psychotherapists (who actually did the weekly therapy). There was excellent communication between everybody involved, and it helped my NLD son tremendously after a year & a half of effort.


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RE: Those who have experience with special needs children,

Seeking, I was kind of hoping you would come back and say there was no family history. I hope our story will help you navigate this.

I could have written your post six years ago. I also had a strong family history of bipolar (which is highly genetic). I did not want to consider the possibilitly with DS - - to me, it seemed like my childhood was repeating itself in the cruelest way. I felt robbed. I had done everything I could to raise my son right and now the same things that plagued my childhood were coming back to haunt me (my brother was bipolar, as were my grandparents and I think my mom was undiagnosed).

We first went to a psychiatrist when DS was 6 and he was having rages that lasted for hours at a time. He was banging his head against walls, threatening worse harm and talking about wishing he was dead, among other things. I was against using any kind of medication for so long, but therapy wasn't working and he was miserable and, really, a danger to himself.

The psychiatrist discussed the possibility of bipolar, given the family history and the behaviors. I didn't want to go there yet, so the psychiatrist tentatively diagnosed DS with depression and said "Let's try antidepressants. They can have a negative effect on kids with bipolar, but we'll watch him closely and if any warning signs emerge we'll simply change the meds."

Sounded reasonable to me. So he started a low dose of Zoloft. Within a day or two, he was acting strange and very hyper. I reported this and the doctor switched him to a low dose of Celexa. The strange behavior stopped and DS seemed to do pretty well. His mood improved and the rages decreased. We went along that way for a few months, then the moods got worse again. The doctor increased the dose of Celexa, just slightly. Within a day, my son was no longer my son. He was paranoid, delusional, raging out of control and even hallucinating. He was scared to death and so was I.

I had no idea that a slight increase from a low dose of an antidepressant could cause this kind of reaction so quickly, but it can. And even though we stopped the medication immediately, the adverse symptoms lasted for months, even while he was being medicated properly.

I'm leaving out lots of details that I would be happy to share with you by email. I just feel obligated to share this information publicly so that maybe it will help save someone else's child from going through what DS went through. The guilt I live with will never go away. If I had just been open to the correct diagnosis from the beginning the whole scenario could have been different.

Once DS had the adverse reaction, I quit the local idiot psychiatrist immediately, bought the book The Bipolar Child (you really should run to the bookstore today and get this book, which is widely available and invaluable), read it in a day, and spent lots of time on the CABF website, linked below. I used the referrals in the book The Bipolar Child to find our current psychiatrist, a specialist in psychopharmacology who works closer to NYC. It's a 2.5 hour drive to his office each way, but he saved DS's life so I drive it gladly about 3-4 times per year. We consult by phone more regularly.

Most local psychiatrists are simply out of their league in treating this disorder, so I definitely recommend trying to find someone with a national reputation. I would be happy to ask our doctor if you like. He runs a listserve for pediatric psychiatrists worldwide.

I really do understand how scary this whole thing is, and how your daughter's future is weighing on your mind. But the good news, if she does have bipolar, is that it is a highly treatable illness. Most children have to go through med trials to find the right medication or combination of medications. But once they do, they can lead very "normal" lives. My DS's biggest problems at this stage of his life are related to his dyslexia, not his bipolar. He has been stable for five years. He has several very close friends, plays the drums, skis, hangs out with the neighborhood kids just like any other kid. If we manage to keep him away from drugs and alcohol, I anticipate he will lead a very happy and successful life.

The good thing about diagnosing and treating bipolar at an early age is that kids learn that they feel better when they take medication. They grow up knowing the difference between when their meds are working and everything is fine, and when they aren't and they are symptomatic. The symptoms don't become ingrained as part of their personalities, and they are less likely to be med resistant than those who are diagnosed as adults.

So if your DD has bipolar, remember that it is not as devastating as it might feel. She can be treated successfully. There are so many parents of children with disabilities for which there is no medication, so in a way, we are lucky. That's what I try to focus on.

My email is not linked in My Page, so I will email you in case you want to continue this discussion privately. Good luck with your phone calls today.

Here is a link that might be useful: bpkids.org


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RE: Those who have experience with special needs children,

Hi seekingadvice, just wanted to say I hope your dd had a better day today. Hope you're feeling better too.


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RE: Those who have experience with special needs children,

I read all of these posts and all I can say is 'bless your hearts as parents'. Fortunately, I've never gone through any of that with five children but I'm sure your lives have been very consumed with your children that have had so many problems.....my hat off to each of you and remember to take care of yourselves too. I was very interested is reading about the bipolar disease. My son-in-law is bipolar as is his mother, also he an alcoholic in AA over two yrs. now. They have three children and my darling daughter (who is a marvelous mother with the patience of a saint) is so very concerned that those genes could be passed down to one or more of her children. They are 6,8, and 10 and are very bright, well behaved and well adjusted children.....I just pray that all continues as it is now. It was very interesting reading, educating myself more is a good thing. Thanks.


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RE: Those who have experience with special needs children,

Seeking -- One other possibility (that I've hesitated to mention for a couple of days because I never quite believe it until I see it again with my own eyes...) is allergies. For some kids, especially kids with underlying neuro issues, they can manifest as behavior problems.

I'm not suggesting that allergies are the 'root' cause of your daughter's issues -- not that simple. Just that allergies may be contributing to her recent increase in symptoms. My son has food sensitivities, and was having a really bad last few weeks. We locked up (trunk and padlock - no kidding) the foods we found out he was sneaking, and he's back to his sweet self...


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RE: Those who have experience with special needs children,

As a sidenote to above, after a couple of years of sporadically out-of-control behavior, we figured out that artificial coloring made our daughter lose control and become extremely angry for no reason. She was impossible to deal with until the offending substance made its way through her system, and we learned quickly to keep the fun, colored treats out of our house; our other children were very good about this and did not resent it. I know that probably is not the case with your dd, Seeking, but I do wish more parents would be made aware of this possibility. She was a different child without the coloring. Yes, this is same child who was affected by not eating on schedule or not drinking enough water. She's now 18 and still does not eat colored food often, as it puts her in a "lousy mood". By older childhood, she learned to pay attention to when and what she had last eaten or drunk, and it made so much difference-- I didn't have to be so diligent and now hardly give it a thought. I certainly do wish you a good and quick resolution to your dd's troubles.


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RE: Those who have experience with special needs children,

I've been following this thread and wanted to underscore that you parents should fight tooth and nail for what your kids need. This has been said a couple times and bears repeating.

What I can add, is that this lobbying is urgent when your kids are young. Intervention is available via schools' funding and it is a matter of shaking those resources loose. Fight hard. Because the situation will change dramatically when your child becomes an adult.

I am a psychologist specializing in competency, capacity and disability evaluations in a pretty well funded and progressive state. For way too many special needs kids, it is like falling off a cliff when they finish school. Unlike the children's system that is premised on all children getting what they need to succeed (in theory anyway), the adult system is completely different when it comes to qualifying for services. The 'right to an education' concept is not replaced by a 'right to a successful life' concept. Eligibility for services is based on membership in very clearly defined groups and those groups unfortunately would not include most of the children described in this thread. "Mental health" dollars target the severe and chronically mentally ill, not the deeply troubled. "Developmental disability" dollars go to people with profound developmental delays - not those who "can seem normal, but...".

Just this morning I was discussing a 19 year old autistic student with the intake worker for the Division of Developmental Disabilities. They require a mild mental retardation diagnosis in addition to the autism for him to qualify. Or extensive evidence that his impairments are significant and disabling in multiple areas. I kept thinking of this thread and that so many of the kids discussed here would never make that cut.

Fact is the resources for adults ARE much more limited than those for children. I see many high school seniors with profound cognitive disabilities (mental age 4-6) who will easily qualify for services, but then will have to wait. I could give endless examples of families in desperate need of help being stuck on waiting lists forever. I am haunted by one saintly woman providing total care (dressing, feeding, bathing, diapers, everything) 24/7 to her nonverbal sister with profound mental retardation. "Don't get too close. She's a grabber, and it's really hard to get her to let go." On the waiting list now for 11 years. Unbelievable.

I could go on and on with examples, but you get the point. I am in no way defending the system. It is what it is: overburdened, underfunded, with stringent eligibility criteria. (No need to kill the messenger either, please.)

My point is that there may not be much available for your kids once they age out of their school years. Public resources are limited and the eligibility rules are very different. I agree the disorders being discussed here are very, very real. And heartbreaking for parents. But they may not qualify for intervention in the overburdened adult sector.

You are right to fight as hard as you can now.


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RE: Those who have experience with special needs children,

sweeby and sjerin, thanks so much for pointing up the possibility of allergies! I hadn't given that much thought, but it is true that this behavior does not occur during the summer or winter, only spring and fall. I don't know yet what that might mean in terms of sensitivities or allergies, but perhaps I ought to take dd to an allergist?

celtic, thanks for your professional perspective. It is heartbreaking to think about the many adults who lack resources and assistance. I am thankful that my dd's difficulties will probably not damage her quality of life in that way when she is an adult, but it does underscore how critical it is to get her (and all children in like circumstances) all the help and accomodations we can now, in the early days, so that she learns coping mechanisms for her adult years. I want to give you a heartfelt THANK YOU for the work you do, celtic!!!

I'm sorry I haven't posted back, but I've not really felt like writing about it for the past few days. I'll post more later about how things are going.


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RE: Those who have experience with special needs children,

Paigect,

I will send an e-mail to you, but I want to highlight for everyone to BEWARE OF SSRI's FOR CHILDREN AND YOUNG ADULTS! There is now a federal warning out about this, as there is documented relation between their use and suicide attempts by young people. I know personally of one dear young lady who is bipolar who nearly succeeded in ending her life after taking these.

I will try to find a decent link and post it separately. Celticmoon, do you know anything about this?

Julie


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SSRI link

Here is a link of interest on the SSRI's.

http://www.ahrp.org/infomail/04/04/16.php

There seems to be controversy over this issue. All I know is that a dear young lady who was treated with these meds nearly succeeded in taking her life, and shortly thereafter, warnings were published about them for use with young people.

I would check it out thoroughly before allowing a young person to take these meds. They have also been reported to cause aggression.


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RE: Those who have experience with special needs children,

Here is a fairly new development. A few days ago, dd was playing during recess and a couple of boys chased her (good naturedly). She got a little upset about it, though she wasn't sure why, and then lay down in the grass on the playground and fell asleep. The teacher sent her to the nurse but she "was fine." She has fallen asleep at least one other time at school, and now I'm wondering if this might be some kind of seizure activity? It certainly seems odd for a child to simply lie down in the grass and fall asleep after running around at recess. I didn't really pay much attention before when she told me she fell asleep during class and I can't even remember whether it happened once or twice (besides the playground incident).

This week was a big change from last week. Her behavior was on the other end of the spectrum--she was happy, laughing, giggling, singing, jumping around--and I'm worried about that! It seems like it might be TOO big a change. It was actually sort of annoying, to be honest, because she wouldn't hold still and she'd come up from behind and grab me and shout in my ear something silly and things like that. She had two successful playdates, though. Today began as a repeat of last Sunday when I was in tears by the end of the day, but I discovered that even though she rants at me and shoves me away and tells me to leave her alone, she actually melts into my arms if I hold her close. Her anger dissipated after that and we've had a few ups and downs but nothing major. She is, right this minute, in between the two states I mentioned--sometimes almost giddy and sometimes angry and mostly in between.


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RE: Those who have experience with special needs children,

Jubileej, I don't treat children and I don't prescribe meds. But yes, there are findings associating SSRI use with increased risk for suicide. Complicated research because the mood disorder itself carries some association with suicidal thoughts and behavior (it is one of the diagnostric criteria for depression).

I do know that way, way, way more kids are given diagnoses and medications than was the case several decades ago. I'm not completely convinced it is because more kids are sicker these days. The culture has shifted so dramatically: more aggression, sexuality, media/televison, divorce, mobility - there's a bunch of factors that could be affecting kids' views of themselves and their futures. So maybe more kids are clinically depressed. But truthfully, I don't know. I do firmly believe meds are a huge step and not to be taken lightly.


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RE: Those who have experience with special needs children,

(OT, my apologies Seeking)

Celtic, did you attend the conference in Boston Thursday or Friday, bac?


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RE: Those who have experience with special needs children,

(OT answer) No. Was it the annual Harvard psychopharm update? We go on alternate years. Well, we both go and DH actually attends while I visit friends and family...


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RE: Those who have experience with special needs children,

seeking-- I think the sleeping episodes should most definitely be brought up to any professional she may see; yes, that is strange that she would lie down and actually fall asleep in the grass. Has she ever had a brain scan? Granted, I know nothing about the medical profession whatsoever, but I do know what it's like to try to figure out a behavioral problem and how important it is to consider everything, even symptoms that may seem completely unrelated.


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RE: Those who have experience with special needs children,

Terrific 6-page article in the April 9 issue of the New Yorker on children and bipolar disorder: "What's Normal?: The Difficulty of Diagnosing Bipolar Disorder In Children," by Jerome Groopman.


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RE: Those who have experience with special needs children,

UPDATE: May 9, 2007.

First, I'm sorry that I missed the last 2 posts by sjerin and awm03! No, she has never had a brain scan but I think that will soon change. awm, thanks for the article information--I will definitely look that up.

We had our appointment yesterday at the Mind Institute, a fabulous facility, btw. It was pretty grueling. DD spent 6 hours in testing with a couple of fairly small breaks. She held up very well but had quite a meltdown that evening. We live 2 hours from the center and our appointment was at 8 AM so we were up at 5 AM and didn't get home until after 4 PM. Not surprising that she fell apart after dinner, but I could have brained my dh for unwittingly escalating what was obviously the meltdown build-up. I think I could have kept it to a dull roar and defused it if he hadn't insisted she apologize to her sister for slapping her arm (necessary) AND give her a hug. Hugging is just not something she can do when she is in meltdown mode, but dh pressed the issue and ended up yelling at her, sending her to her room and taking away a trip to get an ice cream cone, her promised treat for doing such a good job at the testing. Not surprisingly, full meltdown ensued. It took a lot of rocking and soothing and singing and waiting before she calmed down. I had to think of a way to retract dh's punishment of no ice cream without excusing the action that prompted it and without giving the appearance of a divided camp. It just seemed very wrong to me to take away something she had already earned, which she wouldn't have lost anyway if he hadn't mishandled things (he has not had nearly the experience I have now in dealing with the meltdowns). It's touchy, as you don't want to instill the idea that misbehavior is rewarded but you can't punish the misbehavior and not reward the stellar. I tried to explain to the girls how we were all very tired and crabby, including Mommy and Daddy, which did not make it ok to yell and slap but we would all put it aside this once and start over. The girls then all hugged and I told them to get their shoes and we went and got ice cream. DH stayed home and sulked and I feel bad that he disapproves of what I did but in this one instance my instincts were loudly telling me he was wrong. Normally dh and I allow the other to make what we perceive as a wrong decision without interference, though usually we are on the same page, but this time I did not.

Anyway, they were so nice at the clinic. They watched Alex use manipulatives, gave her intelligence tests, watched her play, checked her motor skills and questioned her in many ways about her feelings. They spoke with us and gave us a couple of in depth questionnaires to fill out, which we later learned gave them an overall picture of her.

We have not yet heard how she did on the final components of the testing, but we were able to hear about her prior testing results and some observations by the staff who tested her (two PhD docs). Okay, so are you ready for the diagnosis?.....They have never seen anything like it before!!! It's a totally new case to them!!! These are the experts who deal with this stuff all the time, and they said exactly what everyone else has said so far: dd is a big puzzle. Obviously, there is something going on neurologically, but it does not fit anything they've dealt with. Autism/ASD was ruled out. They told us her academics were the highest they'd ever seen for her age and she was off the charts, yet in other areas she tested absolutely average for her age.

The recommendation now is to see a child psychiatrist and a pediatric neurologist (the latter is my request). The Mind Institute diagnosis for the time being is Anxiety Disorder and possibly Mood Disorder as well. They want to have her checked for bipolar disorder also. That's why they want us to see a psychiatrist.

So...I have no idea what this means in terms of school/special ed. The doctor at the Mind Institute told us she would look closely at that as she knew there was a certain loophole that would allow a child like Alex to remain in special ed. Anyone know about that? Since Autism/ASD has been ruled out, the MI and Far Northern Regional have nothing further to offer us except possible referrals, so we also do not know what exactly to do from here. Play therapy was suggested by the MI doc and I think that's an excellent idea, but I am not sure how to find a therapist as I've not had much luck so far. Our area is very limited in such resources for chilren. There are no pediatric neurologists or psychiatrists around here, either, so I'm not sure how to locate the best. The MI recommendation was to ask our insurance company, but that seemed like a poor way to decide on the best doctor. I don't really know what is covered by our insurance, so I guess I'd better find that out. They are going to give us names in their area and I have a couple of recommended doctors in the Bay Area (about 4 hours from us).

We have our scheduled IEP in 2 weeks, and I'm not sure what to say or request. If you remember, they have been trying to remove dd from special ed altogether. We would like some kind of...I don't know what...but something that would allow for accomodations as needed. Since we still don't have a firm diagnosis other than anxiety disorder, I don't know if we have any rights as far as accomodations. The doctor at the MI felt that dd really needed a once a week session, either through the school or outside therapy, in order to cope with the stresses of school, and of course there is the fact that she cannot follow a string of verbal instructions. She simply can't do it.

I am also concerned that with this present diagnosis and the recommendation to see a psychiatrist, the logical step they will take is to recommend medication. I don't know how to decide when/if such a thing is appropriate, particularly since this is not a cut and dried case. My personal belief is that the anxiety is effect rather than cause, since she was basically born this way. I don't know yet what Anxiety Disorder is about, so perhaps that is a valid diagnosis on its own and explains the processing disorders etc.

I welcome any and all feedback. Thanks if you got through all of this.


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RE: Those who have experience with special needs children,

Seeking, I believe your instinct is right - - your insurance company is not the best place to call for a referral. I can probably get you the name of an expert psychiatrist in your area. Ours runs a listserve for psychiatrists all over the country and is very well known/connected, so if you tell me what city you are closest to I will call him. I don't have my email contact on My Page, but if you want me to email you and send you my email I will. Oh, and where we live, the best psych doctors don't even accept insurance, so we have to pay out of pocket.

I'm glad they gave you some preliminary feedback, at least. It might make sense to request an extension of the PPT date in order to await a diagnosis from a psychiatrist. If she does end up with either a bipolar or anxiety disorder diagnosis, and you have a case that it is affecting her at school, then she can be labeled "Other Health Impaired" (OHI) and kept in special ed. This is the label that applies to ADHD as well. It is probably the "loophole" your specialists were thinking of, although it's not so much a loophole as something written into the statute.

You know my views on meds from my posts above. The right meds can make all the difference. With even a slight possibility of mood disorder in the mix, I would stay far, far away from antidepressants and instead look at a mood stabilizer first, if you feel it becomes necessary. We have been very successful going that route and my DS is one of the only bipolar kids I know/know of who has never had to be hospitalized. He has a happy, pretty "normal" life. I really attribute this to being in the care of an expert psychiatrist and being on the right meds.

When it becomes necessary is a matter of opinion, but for me it was when my son was talking about hurting himself and when his quality of life had deteriorated to a point that he was pretty miserable most of the time.

It is a choice parents shouldn't have to make, and anyone who thinks it is done lightly hasn't walked in our shoes. Good luck as you navigate this difficult path.


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RE: Those who have experience with special needs children,

Thanks for writing of your trip to the MI, Seeking. I do not know enough about special ed situations to say much, but I do know of an excellent play therapist who has worked with my friend's (mildly) autistic son for many years now. My friend has always raved about this gal and my daughter took part in the play group when she and the boy were in first and second grade. I don't recall where you live but I believe she works out of the San Jose area. I also don't recall whether they have had to pay for her out of pocket or whether the school picked up the tab. My friend moved to Pleasanton 3 or 4 years ago and this wonderful teacher treks up there weekly to continue therapy. If you are interested I'd be happy to contact my friend and ask for more info. Hmm, now I wonder if I have the correct Bay Area. Are you in northern Cal.?
Erin


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RE: Those who have experience with special needs children,

Seeking,
You and Paige are absolutely right -- your insurance company is not the best place for a referral. I'm sure Paige's list will be helpful. I don't know exactly where in Northern California you are, but at one point child psychiatrists at UC Davis were working on helping kids in underserved areas of Northern California. The UC Davis doctors might have some suggestions from you, even if you are not close to them.

As Paige noted, OHI is not a loophole, although the MI folks may have thought of it that way.

As Paige said, the right medication for a child can make all the difference in the world. Unfortunately, medicine is not an exact science, and most psychiatric medicines have not been studied in children, so it can be a trial and error process to find the right meds for one's child. Our son has been on numerous medications over the years, and while some of them have helped some, he has not had the success on them we would have liked. Even so, I think they have enabled to get to where he is (finishing high school next month, we hope and preparing to go to college). So, if a psychiatrist suggests meds for your daughter,I recommend that you and your husband approach the issue with open minds, ask lots of questions, research the proposed meds and make your decision based on what you learn.

One place that might be a resource for you is the Research Training Center at Portland State University. RTC . "The Center is dedicated to promoting effective community-based, culturally competent, family-centered services for families and their children who are, or may be affected by mental, emotional or behavioral disorders." I get their newsletter, and some of their acticles have been very informative.

Another resource is the Exceptional Children's Assistance Center. While it is a North Carolina-focused organization, they have lots of great links on their website. ECAC

I'm sure you feel overwhelmed, but know that there are lots of folks both where you live and around the country who support you. We have always been very open about our child's issues, and we have had great support. It has made a huge difference when facing the challenges of having a child like our son.

Good luck!


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RE: Those who have experience with special needs children,

Thanks for the update Seeking -- I wish there had been some easy answers, but of course, that's just not how this situation works...

I can't add any more advice to the excellent suggestions that Paige and Brachl have already given, so I'll just say that I'm thinking of you and your DD, and hope things begin to work themselves through.


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RE: Those who have experience with special needs children,

Seekingadvice- I just scanned most of the posts here and it looks like you are getting some really good assistance. I am glad to see that you have started the process of getting your daughter diagnosed. Sweetby has given you good direction of dealing with the school system. The one thing that I would add is for you to find a Child Advocate. They are can offer you advice on your rights and direct you on how to deal with the school district. They can also appear on your behalf before the IEP or CSE (Committee on Special Education). If you have trouble finding them, contact your local department of children and family services (county office usually) they may be able to give you some direction.

I am not in CA, but here in NY we can acquire an IEP once the psych exam is done and a "classification" is assigned (mental, emotional handicapped or emotionally disturbed). The IEP will give you the extra services and daily routines for your daughters education. The step beyond this would be to have a CSE meeting. They can decide if you daughter should be in main stream or in an alternate education facility. Additional services that the school must pay for outside the school building all goes through the CSE department.

Just because it has not been mentioned to you yet, children with ADHD can often have other issues that can result in some behaviors that you have seen in your daughter. (My son is ADHD/ODD (oppositional defiant disorder)) It is not uncommon for these kids to have different behavior at home from social places (school, friends homes), having melt downs when they become frustrated, they can also be come violent (yelling, hitting, hurting others or themselves, cursing) then turn around and apologize, they can have mood swings, inability to focus, distractability, fidgity and so on. They often score high on IQ tests, but can perform poorly in school. Each child is unique in their disposition and how they are affected by the ADHD. It can be difficult to weight through all the options of what could be wrong and how to treat it. You might want to pop over to the ADHDnews.com forum. There are many parents dealing with the explosive issues that you see in your daughter. I would also recommend a book by Dr. Ross Greene The Explosive Child: A New Approach to Understanding and Parenting Easily Frustrated, Chronically Inflexible Children you might find it helpful.

Perseverance will get you though this.
-Candace


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RE: Those who have experience with special needs children,

Thanks so much AGAIN, everyone. I am trying to wade through all of the potentials and figure out a course of action. DH learned last night (he attended a meeting which our case worker also attended) that the district is planning to release dd from special ed. The case manager told dh that dd does not qualify as it does not affect her school work. DH and I disagree but we need to determine how to proceed right now. I believe we can delay a decision until the testing is completed and the report is in? We also have not finished with her testing, just the autism part of it.

I will get back and address everyone's comments more fully when I can bring myself to do so. Right now I feel like I'm turning around in circles.

BTW, I live in Chico, 2 hours north of Sacramento. I can be emailed through this site and that will give you my addy or let me know and I'll tell you how to contact me.

I have wondered about ADHD but no one has ever mentioned it as a possibility. At the MIND inst. they mentioned how fidgety dd was but said it didn't look like ADHD fidgety because she stayed on task the whole time and didn't attempt to leave her chair (just twisted herself up like a pretzel in it, legs over head, lol).


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RE: Those who have experience with special needs children,

Seeking - In a perfect world scenario, if you could keep your DD eligible for services, what would you have the school do? Think about the typical day for a child in her grade, what would be hard for her and exactly what accommodations you would like the school to make? That might help you know how hard and where you need to push to get her what she needs. After all, that's really the point, as far as the school goes.

For example, some accommodations might be:
- Seated near the front of the classroom, or away from the window, door, or A/C unit (if it's loud);
- In the same class with a good friend to ease social strains, or placement ina social group for lunch;
- A copy of the teacher's classroom notes if writing is laboriously slow, or if she can't listen and write at the same time;
- Permission to leave the room and go to a designated 'quiet space' if she's feeling overwhelmed;
- Permission to chew on a 'chewy toy' or fidget with a worry stone;
- Untimed tests.

I have no idea if any of these would help, but they're all suggestions that can help some kids cope in a typical classroom, and they're easy for the school to agree to since they're no-cost, low effort strategies.


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RE: Those who have experience with special needs children,

Hi Seeking, did the MIND people give your daughter a Test of Variables of Attention? It's a good test for ADD. It's a task of mind-numbing detail that drives ADD people bonkers after 5 minutes, but non-ADD people can summon the effort to focus and get through it. Just wondered, because there's more to diagnosing ADD/ADHD than anecdotal evidence & observation. My ADD son isn't a fidgeter and LOOKS like he's on task, but he's daydreaming or having to constantly refocus on his work -- very deceiving to a teacher or parent trying to monitor his work.

I'm sorry you feel like you're going around in circles. Hope you get a chance to restore & rest this weekend.

Had a interesting encounter tonight when going out to dinner w/ DH. We struck up a conversation with the couple sitting at the table next to us and had a lovely evening with them. Turns out the guy is one of these doctors: pediatricneurology.com. I've always loved that web site, and was very impressed with the doctor. I'll bet the books offered on the site are excellent.


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RE: correction

Hmmm, I thought that link worked...

Trying again:

Here is a link that might be useful: Pediatricneurology.com


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RE: Those who have experience with special needs children,

Seeking, I sent an email to our psychiatrist for a referral for you. Is Sacramento the only nearby city, or is there a smaller city nearby?

To find someone very experienced and knowledgeable, it is usually best to stick to the cities, at least initially. We travel about 2 hours for our doctor, but we only have to do that about 4 times per year. The rest is done by telephone. Other people I know have been successful starting out with a city doc to get meds straightened out and then take a referral to someone more local for maintenance, keeping the city doctor on the back burner if issues come up. Just something to think about.


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RE: Those who have experience with special needs children,

Firstly, I have read the posts and am sending ((((HUGS)))) to you Seeking!

As I am not in America I don't know the schooling/medical system there. But I can make some suggestions for the behavioural issues- I work with special ed kids here.

You mention that she prefers routine?
I strongly recommend a structured afternoon routine. Ideally, present it with both text and visuals. At this time you may need to abandon extra curricula activities to focus on getting things under control.

Social Stories can be very effective for shaping behaviour. http://www.polyxo.com/socialstories/introduction.html You can use photos in addition to the text.

'If-then' statement developed, displayed and review frequently helps establish consequences for inappropriate actions.

Establish step by step strategies for calming down- these are perfect to add to a social story.

For you, consider a reflective observation tool, watch carefully using ... A B C Antecedant (what led up to it?) Behaviour (what exactly did she do?) Consequence (what happened then?) This may show a pattern in one or more areas that you previously didn't notice.

Naturally, lots of positive feedback for the behaviour that you want increased.

When things errupt- watch your tone of voice, keep it monotone and repeat the key phrase (eg 'calming down time') Or repeat a strategy previously talked about with the child "deep breaths to calm down".

Hope these practical 'in the firing line' ideas help.

Em


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RE: Those who have experience with special needs children,

Once again, I want to thank you all so much for the invaluable information and suggestions. I am still waiting for the official report and only have the follow-up phone consultation to go by at the present. We are still waiting to hear what the psychologist's colleagues' input added to our psych's evaluation and to hear whether or not they have any referral suggestions. It appears we are probably on our own there. Paige, we live in Chico, which is a smaller city north of Sacramento, so if your psychiatrist has any referrals for us, I'd very much love to hear about them, regardless of distance. We have one recommendation for a psychiatrist in Mill Valley, which is some distance away but we have summer free so that's not a problem (and we'd do it anyway if that was the best way to go).

So, for now we are on hold for her IEP--it was cancelled until we get the final report from MIND. Meanwhile, I'm scrambling to try and figure out what we should do about special ed. Thank you for the checksheet, sweeby; it was very helpful to think about those items in making a decision. I have to say that I don't think special ed really is the best place for Alex, but I haven't seen an alternative that is binding. By binding I mean that we aren't at the mercy of a sympathetic teacher/school but have some specific areas of trouble that are addressed on paper (with appropriate accomodations if needed). We can get a 504, but I can't figure out what exactly that means for us. It may be just right but I am not sure whom to believe about that.

I haven't found a child advocate but would like to. We really seem to be limited in my area but perhaps when I work through this and feel I am pretty informed about everything I can get something going! I'd like to help others who may be struggling, also.

Alex's meltdowns have dwindled considerably. We have figured out some of the triggers but more importantly, we have worked on getting past them without going into complete collapse. koala, thanks so much for your information. I could not initially determine what triggered the meltdowns--they just happened every day after school and anything could set it off. Now, though, they often seem to be linked to an obsessive idea that Alex gets. She decides, for instance, that she wants to have a playdate with a friend. It doesn't matter whether or not it's possible, she latches onto the idea and won't let go. Often, even if it happens, the idea simply expands to incorporate something else that can't be done. Does that make sense?

One last note I will make is that I got this idea from watching her after school. We have an old horse (not really rideable because he's just so old). Alex would go out to see him every day after school, following her meltdown, and just sit on his back when he'd let her. She's stay out there for a couple of hours sometimes. He stopped letting her on his back and she was so sad--it was like she wanted to pour some love on something that was big and didn't talk. So...I found a miniature horse on craigslist and bought it. It was the most amazing thing! He is a sweet and affectionate little guy, just the right size for her to climb on his back. She goes out every day and sits on her pony. Sometimes she reads her book on his back. He comes running over to her when she comes out. I really think it has given her an important outlet for her feelings. Thank you to the person (paige?) who recommended a pet. We have a dog and a cat but the pony is what really made the difference.


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RE: Those who have experience with special needs children,

seeking, the link below provides a directory to find a doctor who is a member of CABF, which means that they should at least be cognizant of the current issues surrounding childhood mood disorders (I know you don't have that diagnosis, but it would be good to have someone who is up to date on this issue). You might start there. This is definitely a shopping-around type of thing - - don't be afraid to shamelessly interview the doctor about their experience with a variety of psychiatric issues, what their treatment protocols are, etc. This is just my opinion, but I would run in the other direction if any doctor tries to convince you to try antidepressants for Alex without first having a mood stabilizer in place, since there is a family history of bipolar and some possible symptoms. That would be a sign that they are not really up to date on the latest in psychopharmacology. It is just too big of a risk that she could have a very bad reaction.

There is a checklist at the link of things to ask any doctor you call.

My doctor never answered my email about a referral, which probably means he didn't know someone. I will keep asking around, though.

I don't remember if it was me who recommended a pet, but I know that my son *needs* his pets. He has to have a dog in his room at night or he can't sleep. When our last dog died he cried every night until we got our puppy. I think kids with special needs often do well with pets, because animals are not nearly as judgmental as people and they don't tend to hold a grudge! Alex is so lucky that you live in a place where you can keep horses -- my son loves horses and I often regret that we don't live near a farm. He took riding lessons last year at camp and loved it, but it was so expensive we can't do it again this year. :-(

Here is a link that might be useful: CABF referral site


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RE: forgot to add . .

I forgot to give my update - - we won our case against our school system! They have to pay for 2 years (at least) of special ed private school for DS. I will post more when the appeal period is over. Just wanted to let you all know - - there is hope for a good outcome from due process.


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RE: Those who have experience with special needs children,

Oh Paige, that is wonderful news!!!! I'm SO happy for you and your DS. Perseverence, knowledge, and smarts--you've got what it takes!

Thank you so much for the link above and especially the information on how to interview a doctor. We have one recommendation for a doctor (female) in Oakland from our pediatrician. We have one other recommendation from a friend who works at a Regional Center--the doctor she recommends travels way up to her Center to work with children and she loves him, but it's hard to gauge effectiveness in a case like that and I wasn't sure what to ask.


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RE: Those who have experience with special needs children,

"don't be afraid to shamelessly interview the doctor about their experience with a variety of psychiatric issues, what their treatment protocols are, etc."

Great Advice! I had to learn this the hard way, but now NEVER choose a doctor any other way. You need one who will listen to you and who has a similar treatment philosophy or else you'll just end up butting heads...

Paige that is WONDERFUL news! Congratulations on your perseverence and advocacy to have won what your son needs. I hope that school offers a good fit. But at the very least, at his age, it'll offer an emotionally safer environment.

We also recently had a good result with our school regarding my son's IEP. He has been having some behavior issues in class lately, and something about the school's proposed goals didn't sound right - so I insisted on taking a few days to think about it before signing his IEP, even though I was in 'basic agreement' with the goals. Upon closer examination, and by comparing the goals to our state's written educational standards, I was able to find where they had been watered down, and by citing references to the state's version, was able to get them tightened and made more measurable.

But the biggest and most important change was being able to tie my son's recent behavior problems to 'unstructured' time spent in the regular classroom while his classmates were receiving instruction that was well beyond my son's ability to understand. For example, he gets pull-out instruction for writing, and at the beginning of the year, his writing pull-out was at the same time as the regular ed class' writing instruction. But near the end of the year, schedules were changed, and behavior problems began. Well - Duh! If you put a child with attention and executive function difficulties in a reg ed classroom and tell him to 'work independently' while the teacher is teaching something else for 90 minutes, you have to expect he'll have a hard time sitting still and being quiet. The school already had language about the importance of minimizing unstructured time, but I was able to get it limited to no more than 30 minutes at a stretch. I'd like to get it specified that his pull-outs will coincide with the general ed instruction times for his pull-out subjects, but they weren't willing to agree to that yet since schedules for next year weren't even beginning to be drafted -- But that gives me a goal for next fall.


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RE: Those who have experience with special needs children,

Good for you, sweeby!!! Nothing like strong mothers, eh?

Do you guys have any thoughts on whether we should try to keep dd in special ed or not? I have a strong sense that she has a mood disorder. She certainly seems to be falling into the early onset bipolar descriptions, though it is only this year that it has given us that picture. We have always been told she "doesn't fit" anything, has an atypical profile, is a puzzle, etc etc. Now, though, I am seeing a shift in her behavior that has me thinking bipolar, whereas I used to recoil from the idea and dismiss it. In reading the links provided by you guys, I see the rapid up-and-down cycling. I used to think it was great that she was so excited and bubbly, though I would wonder why she couldn't seem to hold still or stop jabbering. Then suddenly a dark cloud comes over her--her face scrunches down and she paces angrily and lashes out at everyone. Sometimes she just sits in a dark funk, which is usually when she visits her horse. Then, by the time she comes back, she's generally fine. I also read that it is common for BP kids to react the way dd does to changes at school, like coming back from vacation/summer, and that it often manifests seasonally in kids, which is true for dd. It's early spring and fall for her.

I wish I knew what to do and what we're dealing with. At this point, a bipolar diagnosis would actually be a relief. Is that a bad thing to think? I guess what I mean is that sometimes, any diagnosis seems preferable to this nether world.

On a happy note, I must brag and tell you that dd got the gold medal in her school's reading program! Not bad for a 1st grader! She got a medal and a $50 gift cert. to Barnes and Noble. She may have glanced briefly at the GC, but the medal--OH MY! She wore it all day at school and shows it proudly to any visitors.

Paige, I copied down all of the Child and Adolescent Psychiatrists in our general area. There are a few in Sacramento/Davis and a lot in the Bay Area. My SIL lives in Palo Alto so I'm thinking that the Stanford clinic might be a good choice for us. I got a recommendation today for 2 of the doctors there--ranked 1 and 2--so that is helpful. I was wondering, though, about narrowing down the field. Do you just start questioning the doctors about what they'll do in the evaluation(s)? How do you decide who would be good for you and who would not when you have no experience in dealing with doctors/evaluations?


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RE: Those who have experience with special needs children,

Sweeby, that's a great result. I think you are right to push further. 30 minutes unstructured time daily is really not acceptable. It is not right for him to be expected to do nothing or teach himself (if that is what this means) during regular class time. They should coordinate so that most of the time, he is being taught, whether in mainstream or pull-out. That seems to be a struggle for most schools, but it shouldn't be so hard.

Seeking, I think if you can make any kind of argument that her (possible) bipolar is affecting her at school, you should try to keep her in special ed. If not, a 504 might be all you can do for now. If things change you can always revisit. My only concern is that there are more protections behaviorally (I think) if she has an IEP rather than a 504. So, for example, if she were to have an unexpected meltdown at school, she could not be suspended for it if she had an IEP and it was determined that the behavior was the result of her disability. This may seem unlikely now, but it can't hurt to keep that in mind.

If she has the bipolar diagnosis, then she qualifies for special ed under the "other health impaired" category if it is affecting her at school. It's the latter part you will have to work out.

When it comes to interviewing a doctor, I would simply call and ask to have a phone conversation, then ask what they would do to diagnose and, if she were to be diagnosed with bipolar, what the recommended treatment might include. I would ask specifically about types of meds prescribed.

For me, the first doctor we saw was the result of a local recommendation. I just went along with what he said, which was pretty much along the lines of: DS might be bipolar (family history and symptoms, like your DD), but we don't want to jump to that conclusion and give those meds right away, so we will just call it depression/anxiety and give antidepressants. He said they have a much lower side effect profile. Yeah right. I think that was just what I wanted to hear, because the thought of dealing with bipolar was too much for me at the time.

The antidepressants caused the worst manic reaction, causing my ds to become, essentially, psychotic immediately upon a dosage increase. It was the most frightening and gut wrenching thing I have ever been witnessed.

We got rid of the antidepressants (psychosis went away immediately, luckily - - that doesn't always happen) and that doctor and I found an expert. I did this by calling a list of doctors in the book The Bipolar Child (highly recommend it) until I found one who referred me to this one. For me it was urgent that we be seen within days, to deal with the reaction to the antidepressant and avoid hospitalizing DS. He fit me in right away, so after interviewing him on the phone we went.

The new doctor said it was common for doctors to try antidepressants first, despite clear signs of bipolar, and it can be very harmful to go that route (as I witnessed firsthand). He said he never presscribes antidepressants in a possibly bipolar child until the child has been on a mood stabilizer for a few months at least, and even then only with extreme caution and watchfulness. I told him I would never use them again with DS, and he agreed. At that point I felt very comfortable with him, because what he was saying conformed to all of the research I had done independently and fit within my comfort zone.

You asked about an evaluation. At your DD's age, this will likely constitute mostly an interview of you and your DH. The doctor will want to meet DD of course, but they rely heavily on parent reporting for young children. I was "lucky" in a way, because DS had a full-out rapid cycling meltdown in the office at our first appointment, alternating between hysterical laughter and crying while banging his head on the floor. So we had a pretty definitive diagnosis. If you can surreptitiously videotape your DD, that could really help.

It might be a good time to start a dialog with her as well, if you haven't already. She is probably scared to death about the way she is feeling (and the scary/angry thoughts she may be having). She probably feels different and unlovable. She will likely be greatly relieved to discover there is something medical that explains it, and that you are doing everything you can to find the perfect doctor to help you all through this. I used the "some kids" method - - "Some kids have scary feelings they can't always control, and it worries them." That way you aren't pressuring her, but validating how she might be feeling and letting her know she isn't alone. Before I knew it, DS was confessing to all kinds of scary thoughts and feelings, and getting it all off of his chest.

I really do understand being relieved of a diagnosis you were once scared to death of. Once you start reading about it, you realize that it can be overcome or at least dealt with if you have the proper treatment. I really believe that it's the untreated kids who suffer, because the behavioral symptoms of bipolar become ingrained into their personalities. They never really learn how to deal with their feelings and then they resist treatment at a later age.

The cabf website I linked above has great discussion boards, but I stopped going years ago when DS stabilized. I kept noticing that although he stabilized quickly without hospitalization, many, many kids whose parents were on that site did not. The common thread in most of the cases? Antidepressants and/or stimulants. I kid you not, look through the threads and you will see. Those on mood stabilizers and/or antipsychotics without the other stuff were doing much better on average. I kept pointing it out, but people thought they should just blindly follow their doctor's directions and I just couldn't watch any more. I hope it has changed since then and that there is more awareness. In any case, it is still a great resource for parents.

OK, I'll stop my book now! Thanks to both of you for the kudos on our win. It's a pretty great feeling.


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RE: Those who have experience with special needs children,

Seeking-

It's always so hard to make these kinds of decisions. Keeping her in special Ed or taking her out, it's very difficult to make those choices. Every school is different. Things to keep in mind:

First, schools are responsible for helping kids learn. They are tasked with dealing with learning disabilities, not necessarily mental health issues. Although, as every parent will tell you, they are linked, from a "definition" perspective, they are two separate things. That's why insurance will pay for "mental health" testing for kids but not "learning differences testing". Schools will pay (when they are hit over the head) for LD testing, but not mental health testing. It's important that you understand that distinction, because in the future you will want to word your requests appropriately. As Sweeby said above, you will have to show that her BP is affecting her learning. It's almost better to just focus on the learning issues without invoking the metal health issues, b/c some schools will say that it's a mental health issue and therefore they are not responsible. It's a tight rope that you may need to walk depending on your school districts philosophy and resources.

Having said that, some schools (mine included) do have what they call "emotional support" classes. In our district it is a small classroom setting with mixed grades and lots of teachers. I think the emotional classroom in our district has 12 kids and 1 teacher with 2 to 3 aides. Having said that, this class has alot of different kinds of kids in it. Everything from high functioning Aspersers kids to lower functioning children as well.

Before making a choice for your child, I think you may want to go and see for yourself what the educational environment is for children in these classes at your school in the higher grades. Look at what is happening in 3rd grade, 5th grade and 8th grade. That perspective may help you choose what the best solution is for your daughter.

Not that you can't change her placement year to year. You can. However, once she is out of the "IEP" loop, it will be hard to put her back in. It's best to keep the IEP and then place her each year where you think it is best. In other words, she can have an IEP, but be placed in a regular classroom with appropriate accommodations.

Good luck on your journey. Don't feel the need to make any snap decisions. Summer is coming and you can take those few months to figure out what would be best. I hope your school district will provide your daughter with what she needs.

Another thing to keep in mind is that some school districts are better than others at helping special needs children. In our area, families have been known to move to our district so they can take advantage of the better special education options our district offers. It's something you may want to look into to see if there is a place near you that would be more suitable for your daughter.

Good luck!


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RE: Those who have experience with special needs children,

Thank you, Paige and geogirl! I guess I didn't make myself very clear. The district wants dd out of special ed, for just the reasons you mentioned, geo--they say it's a mental health issue. I think we can keep her on an IEP because there are other issues as well, though not defined (which puts us in a bind! Labels are needed so the district can check a box). DD has some kind of processing problems but we've been repeatedly told simply that she is a puzzle and defies definition from a disability standpoint. My question was...should we try to keep her in special ed on an IEP? My gut says yes, though I'm not sure why. She does fine in a regular classroom and actually is a teacher's dream most of the time. She doesn't comprehend others not following the rules and she wants to be the best. However, in spite of her high intelligence, that puts a huge strain on her both emotionally and because of her difficulties with processing. Her anxiety and stress has spilled over into school, which is why she is receiving 20 minutes/week of pullout play therapy and why we had to have a spec. ed aide take her out to the playground every day before school started. It is, of course, blatantly obvious at home but most people at school would never notice what a strain she is bearing. There, she will simply shut down and sit quietly with her head down. She goes through anguish if she feels she has done something wrong, made a teacher/station leader mad, not done well enough, etc. A sharp word convinces her that the authority figure doesn't like her/is mad at her because she can't do anything the right way. She really wilts when reprimanded harshly, when sarcasm is used, etc. because she takes it very personally.

I don't want the moon, but I would like the school to agree to certain accomodations for Alex. At present, they are very small needs but I feel it will become increasingly important for her to have outlets for her extreme stress/anxiety. The chance to talk to someone once a week with no pressure, a person she can look up to and seek out when things are particularly intense--that kind of thing. Presently, that is done by an aide in another classroom but she has been very hit-or-miss this last quarter and has only gone to see Alex twice, which isn't acceptable to me. I want it in writing so that I can make sure it happens. That's the kind of thing I anticipate needing, and perhaps allowances down the road for her difficulties with oral processing.


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RE: Those who have experience with special needs children,

I believe, at least in our district, that you do NOT have to have a "name" for the disability. What you need to show is that her performance is not equal to her ability. This wording is important, b/c you don't have to show that she is progressing "on-grade" - you have to show that her IQ is such that she shouldn't be having ANY trouble and should be excelling in the normal curriculum. In other words, if her IQ is 135 and she is reading on grade, well, she is not meeting her own potential. Another angle is that she has a processing issue. Period - she has a processing issue and therefore should be eligible for services. Again, she may not need any services in 1st grade or even 2nd grade. You still want the IEP in place b/c processing issues don't go away. They get more apparent as the curriculum gets more advanced.

Remember too that 1st through 3rd grade is about learning to read - beginning in 4th and then progressing more so afterwards, it's about reading to learn. She will need to be taught test taking skills that work for her. She will need services, just not that many now.

These are the things that concern me:

1) Is the special Ed aide trained in any way in special Ed? In our district aides are not teachers and have not special training. They are there to assist the teacher, who is the professional. I would think that the guidance councilor would be the person she should talk to on occasion.

2) Self-esteem is a huge issue. Especially in girls. Once lost it is VERY hard to get it back. The behaviors you are describing are NOT conducive to developing high self-esteem.

3) Special Ed doesn't mean she gets pulled out all day does it? My daughter was pulled out 1 1/2 hours a day during "core" time, i.e., reading and writing. She was in the classroom during any project time, social studies time and for all other activities. Special Ed students can be provided what they need in the specific areas they need it without being out of the mainstream classroom. Is this not possible in your school?

After what you have written, I would say under NO circumstances should you give up special Ed status or the IEP. No way. You have rights under the IEP, including convening meeting and changing the services your DD receives ANY TIME YOU WANT during the school year. The IEP gives you power. Don't give it up. Your IEP can say basically that you want her to not be yelled at or reprimanded. Your IEP can say that she gets to meet with the guidance councilor 1ce a week for the entire school year. That's all it has to say for this year. Keep it.


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RE: Those who have experience with special needs children,

Seeking, what you are describing - - the shutting down behavior in class - - means that her disability is affecting her education, and that she does need special education services. See the link to Wrightslaw.com below. Based on your most recent post, I do believe you should insist on keeping her in special ed. You say she does fine in a regular classroom, but really, based on what you said about shutting down and putting her head down, she is not doing fine. She is struggling. These types of behaviors need to be emphasized in the PPT, not minimized. She needs resource time and emotional supports built into all of her classes, and if it isn't in an IEP, it doesn't exist.

I would start by letting the team know you want to postpone the PPT meeting until such time as you are able to have her fully evaluated by a psychiatrist, since decisions should not be made prior to that time. After evaluation/diagnosis, I would have your new psychiatrist write the PPT team a letter in advance of the PPT to let them know about her diagnosis and why she needs special education services (based on what you have reported to the psychiatrist about school behaviors). Most psychiatrists do things like this on a regular basis.

When she gets a diagnosis and you take it to tbe PPT, be careful about how she is classified. It could go one of two ways - - other health impaired, or serious emotional disturbance (SED). As you can imagine, the former is an easier designation to live with for many reasons. My son was classified other health impaired (OHI) rather that SED because bipolar is a medical condition, not a "serious emotional disturbance." You can have the psychiatrist add a line about the medical nature of the diagnosis to the letter they will write.

Hang in there. You're doing a great job learning what you need to know to advocate for Alex. Many people would still be in the denial/head-in-the-sand phase of this process - - something all of us who have been through this can remember, I'm sure!

Here is a link that might be useful: wrightslaw eligibility page


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RE: Those who have experience with special needs children,

UPDATE: June 6, 2007

I need help from you guys again! We had our IEP today and I used so much of the wonderful advice and resources provided by you.

The district agreed to keep dd on 'hold' for now, but is trying to get her off of the special ed roster. We have until October while the district awaits the final evaluations reports.

DH and I did not sign the IEP, as there were things in it that I was unsure about and which lead me to think that if we sign, we are agreeing that dd does not need special ed. DH and I do not agree that she would be better served with a 504. I'm hoping to run some things by you guys to get your reaction. They want us to sign by tomorrow, because the coordinator leaves for Germany. To be in compliance, the IEP must be done by June 26--do we have the right to wait up until then, even if the coordinator is gone?

Here are the things that she wrote on the IEP TEAM MEETING PROVISIONS/DECISIONS page:

1. Alex has met all benchmarks, is performing well in all areas of curriculum for 1st grade and is socially well adjusted; doesn't appear to be impacted by a disability at this time
2. Alex does not appear to need special ed at this time; parents would like to keep IEP in place until MIND Institute report is available
3. Team recommends meeting by Oct 1, 2007 to review assessments and recommendations by MIND Institute
4. Parents may want to pursue a 504 plan in the future
5. ____ ____ [case manager] is available for consultation
6. ____ ____ will look into Alex being a kinder-buddy in the afternoon. Parent will remind principal

The other area that I am wondering about is under PRESENT LEVELS OF EDUCATIONAL PERFORMANCE. Under STRENGTHS/INTERESTS/LEARNING PREFERENCES AS IDENTIFIED BY PARENTS AND STAFF The case manager wrote "Alexandra is an excellent reader and speller! She excels in reading, dance and gymnastics. Likes to sing." Then, under CONCERNS OF PARENT RELEVANT TO EDUCATIONAL PROGRESS she added: "Parents are concerned about her anxiety, self esteem; some issues surface at home after school." Some issues??!! Talk about watering down the picture! Anyway, she wrote that "Alex is doing well academically at school," communication is "typical," motor development is "Fine: not a strength area, but within typical range" and "Gross: typical"; for Social/Emotional "Alex has friends at school, is social, stays out of conflicts"; self help "typical"; but here is where my big question mark is-- HOW DISABILITY AFFECTS INVOLVEMENT AND PROGRESS IN GENERAL CURRICULUM OR FOR A PRESCHOOLER, PARTICIPATION IN APPROPRIATE ACTIVITIES: "Alex is currently not presenting with any challenges that interfere with learning." I don't see how they can say that!

Do you have any recommendations for what I should do ie this IEP?


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RE: Those who have experience with special needs children,

Seeking, the first thing you need is a clear idea of why all of the things they wrote are wrong. How is her disability affecting her school performance? You need concrete examples of this.

I would not agree to sign just because someone is going out of town. That's their problem. I would not sign until you are satisfied, even if that means that the IEP says that the parent disagrees about removing the IEP and does not agree to a 504, and the parent disagrees that the child is not presenting with any challenges that interfere with learning (with examples). You can't force them to build the IEP you want without taking them to due process, but you can get your disagreement on the record. Then they will have to say they rejected your suggestions/concerns.

In the short term, for tomorrow, tell them it will be impossible for you to sign it by then and that, in fact, you will not be signing it in its current form. They can't force you. Then take a week or so to think this through, and decide if you need someone who can represent you and help advocate for Alex, even if it is a non-lawyer advocate. If not, you can write a letter stating your disagreement with the IEP, specifically, and to whatever their representations are about what happened during the PPT, and ask them to attach it to the IEP.

Good luck. This stuff never ends, I'll tell ya. We just won our case and afterward, at the next PPT, the school system tried to pull the same b*llsh*t they just lost their whole case on. It's like the whole year of litigation never even happened. It makes me want to tear my hair out.


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RE: Those who have experience with special needs children,

Ditto paigect-- don't sign! Sure sounds like they are trying to get you over a barrel in forcing your signature. Wow, seeking, I think you have some terrific people here to give you excellent advice. Hang in there!


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RE: Those who have experience with special needs children,

Oh, thanks so much, paige and sjerin! I can't tell you how much it helps to have your input. DH and I have agreed, after much foot dragging, to seek out an advocate and really get serious with this. I'm afraid I've just let things slide this past month instead of going all out to search out assistance and get things lined up. My instinct has been to put my head in the sand and hide :(


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RE: Those who have experience with special needs children,

Sorry your school is not stepping up to the plate. That stinks. What exactly does the paper work say? Does it say "ER" (Evaluation Report), IEP (Individual Evaluation Program) or NORA/NOREP (Notice of Recommended Educational Placement)? As to the IEP, is it the IEP they want you to sign, as in "I attended the meeting" or the "Notice of Recommended Educational Placement (NORA or NOREP)? What does the paper they want you to sign say? We are given signature pages on the NORA/NOREP, that says:

____ I approve this recommendation
_____ I do not approve this recommendation. My reason for disapproval is:

I request:
______ A meeting to discuss this recommendation.
______Pre-hearing Conference
_____ Mediation
______Due-process hearing

In our area if you "just don't sign" it's the same as giving approval to the IEP/NORA. I think you need to take action within the 10 days even if you check the box that says "I don't approve". If you weren't given that option, then I would write in "I do not approve the recommendation because my child has a learning disability."

Even if your daughter has NO accommodations in 2nd grade (although an aide in the classroom might be beneficial to her), she should have paper work that says she has a disability. I picked this off a site: " For school age students, the IEP must specify one of the following disabilities: autism, deafness, deaf-blindness, emotional disturbance, hearing impairment, learning disability, mental retardation, multiple disabilities, orthopedic impairment, other health-impairment, speech or language impairment, traumatic brain injury or visual impairment including blindness. These disabilities are defined in section 200.1(zz) of the Regulations of the Commissioner."

It would appear to me that the school feels that they have adequately categorized your daughter (as determined in the ER report) and are moving on to the NORA. You, however, dont feel that the ER report is correct and you need to wait till further evaluations are completed. Im glad you are talking to someone who is an expert in your dealing with your school district. If however, you cant meet with him before your 10 days are up, you might want to sign the paperwork but either attach or write on the paperwork that you DO NOT APPROVE OF THE RECOMMENDATION and request a meeting in October. That gives you time, without starting the whole mediation or due process hearing.

Good luck!


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RE: Those who have experience with special needs children,

Hi again.

Ugh paige. I'm sorry to hear of your troubles & frustrations, they never learn, do they? I sat in front of an alj with an iep that stated, "(service) be provided by (person) @ 1 (45 minute period) per week." Simple enough - a week is 7 sequent days, you say.

The district's attorney argued that should be interpreted as # of school days divided by 7. Alj agreed in his finding (I didn't see the merit of arguing it at the time, lol) and a 'week', as we know it, was reinvented (the district was losing on the liability front and it really was a brilliant move to remediate damages).

sa, paige has hit on a key issue. You need specific & concrete examples of how your DD's symptoms affect her school performance. Don't dismiss (and don't allow the school to dismiss) any of the small indicators of DD's anxieties - expound on them. There are physiological manifestations of anxiety, has DD gone to the school nurse with complaints? Stay strong and best wishes!



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RE: Those who have experience with special needs children,

geogirl, thank you for that clarification!

The page we are supposed to sign says [Our] COUNTY SPECIAL EDUCATION LOCAL PLAN AREA INDIVIDULAIZED EDUCATION PROGRAM, and then it says IEP TEAM MEETING PROVISIONS/DECISIONS SIGNATURE PAGE

Under that it has the following that we are supposed to initial:

____ I have received an explanation and understand my parent/student rights (Procedural Safeguards for Parents and Children).
____ I have had the opportunity to help develop this IEP/addendum.
____ I agree with the recommendations set forth by this IEP/addendum.
____ I agree with the placement and services recommended.
____ I give my permission for the school district or SELPA to bill Medi-Cal for eligible services provided at no cost to parents.

Below that we are supposed to sign and date the paper.

On the first page, it says [Our] COUNTY SPECIAL EDUCATION LOCAL PLAN AREA INDIVIDUALIZED EDUCATION PROGRAM


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RE: Those who have experience with special needs children,

Forgot to say that they told us they can't check a specific disability without the official report from the MIND Inst., so at this time nothing is marked.

Pauline, thanks for your post about the small indicators! Yes, it seems the school wants to dismiss those things as unimportant. And jeez, I just can't believe anyone would be so nasty as to reinvent the week!!! What an eye-opener this whole experience has been.


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RE: Those who have experience with special needs children,

Seems very strange that you can only check positive statements. Very strange. If you can speak to your advocate before the 10 days is up then get his professional opinion. Other wise, check that you received the book (if you did) then write in on the form below all of their positive statements that you DO NOT agree with the recommendations set forth in the IEP and you DO NOT agree with the placement and services recommended and the you HAVE NOT had the opportunity to help develop the IEP (yes, you were at meetings, but none of your opinions or recommendations are in the IEP), I have no idea about the billing issues. What is THAT about? Is that your medical insurance? Id look into that before I signed that one. Id initial each of my additions, make several copies and then depending what you want to do Id write and check off that you wish to keep the current IEP in place until further evaluations (expected in Oct) are received. The point is emotional disabilities quanlify as a need for an IEP. Also, positive performance in first grade is not the same thing as having or not having a disability. Get the advocate and make the school do the right thing. Good luck.


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RE: Those who have experience with special needs children,

On the IEP, I typed up all of the comments we disliked and made notations to indicate we did not agree. I added a list of reasons why we felt that Alex's disability did indeed affect her school performance. DH and I signed and dated our notations (not the actual IEP) and I turned it all in to the case manager's mailbox (she wasn't in her office, but I did turn it in before she left for Germany). I did not hear anything back. Thank you all for the guidance to take this step.

Today we received the final report from the MIND Inst. I am totally shocked at something and I hope you can enlighten me on this. They administered the WISC-IV IQ test and Alex's overall score was 88! I can't believe her IQ is so low. I don't see how it's possible. She is way above her peers in almost every subject area and as I said, she is reading (and comprehending) at a high school level. She reads voraciously. Can it be that a 6-year-old with an iq of 88 could do all of that?

She was also given the Woodcock-McGrew-Werder Min-Battery of Achievement (MBA). Her overall achievement is "Very Superior" (SS = 145), with a high in Reading of 165 and everything else in the Superior-Very Superior range except Factual Knowledge, which was "Average" at 104 and quite a bit lower than the next lowest area (124).

I don't understand this discrepancy. Can anyone shed some light on this for me?

Oh yes, she was also given a NEPSY test (current neuropsychological capacities). She was "Low Average" in Attention/Executive Function Domain (88). She had problems with "the ability to plan, strategize and problem solve" and with "simple and complex visual attention and inhibition on tasks." She was "Superior" in Language Domain and "Average" in the Sensorimotor Domain--she had a lot of trouble (score = "Borderline") when "required to use graphomotor speed and accuracy to draw a line within a track under timed conditions, as she impulsively completed the activity quickly and made several careless errors." Visuospatial Domain = Average. Memory Domain = Superior. The report says "On the NEPSY overall, it is notable that Alex's performance in areas involving language and memory are higher than expected given her overall intellectual capacities, but relatively consistent with her academic achievement. Further, her scores suggest that she demonstrates a personal strength on tasks that require the use of language as opposed to visual or spatial cues. She displayed greater difficulty on tasks that assessed her impulse control and ability to strategize and plan ahead."

Finally, under "Observations" the doctor noted that during testing "At times her perceptions appeared to be off, as she would reproduce block designs in odd ways that looked nothing like the actual design, while believing that she had done the task correctly." The doctor also wrote "...she demonstrated difficulties sustaining attention and concentration at times. In addition, she showed some hyperactivity, as she frequently fidgeted in her seat, moved about in her chair, got up on her knees, and leaned over the testing table...periodically swept her hands across the examination table and traced circles on the desk...demonstrated signs of impulsivity, as evidenced by the quick responses she made without reviewing all options. She was easily distracted and would turn around in her seat each time she heard a door close in the outside hallway."

So...does this suggest anything in particular to those in the know? We are in the dark about what this means. I really, really, really believe in my gut that there is and always has been an underlying issue that is not Anxiety Disorder because it has been present from birth and, until somewhat recently, looked much more like Autism than AD. Perhaps I'm way off on this, but the tests above seem to indicate to me that something is not processing correctly, not that she is lacking intelligence. This is consistent with the early diagnoses we got that she had profound processing disorders. But...what does that mean? Is that a learning disability, and how is it determined whether or not someone has a processing disorder? Those early labels were not official, they were the consensus of opinion by the special ed-speech-audiologist-OT people who worked with her.


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RE: Those who have experience with special needs children,

seeking, the clues what is going on probably lies not in the overall IQ, but in the subtests on the WISC. What are her scores on the various subtests? Compare the highest scores to the lowest scores and then you will have something to work with.

Also, at 6 years old the test might not be 100% accurate. I think 7 is a more reliable age to test. Another consideration is her attention span - - if she was rattling off answers without paying attention, then that could definitely affect her score significantly. These things should have been taken into account by her testers in explaining the results.

Frankly, I'm surprised the MIND Institute did not address the fact that she appears to be achieving at a level higher than what she is capable of. I'm guessing that one or two of her WISC subtests offer the explanation for the lower than expected score, but they should have explained that.

It sounds like you did well with respect to the IEP issue. Hang in there, you're doing great!


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RE: Those who have experience with special needs children,

Seeking, I can't go into detail right now, but your daughter's profile is very similar to my nonverbal learning disordered son's scores: high verbal & memory, low sensory/visual spatial, low scores for executive functioning, impaired graphomotor skills. The low block design score is typical for NLD kids, especially the inability to reproduce a drawing. The anxiety disorders go hand in hand with NLD. These kids' brains are overdeveloped verbally & underdeveloped in the other skills.

I'd go into more detail, but we're dealing with our son's issues again, & won't be online much. In fact, he's shut down.

Did the MIND Institute look into the possiblity of NLD?


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RE: Those who have experience with special needs children,

Time to dive into the wonderful world of neuropsychological testing for kids with issues... And believe me, this is murky, murky water! I used to have a lot of faith in IQ tests. Why not? I was an upper-middle-class 6th generation American white kid with well-educated parents who liked to read and had no specific learning disabilities. Those tests were written for kids like me!

But then enter my older son. It was very obvious as a baby and young child how bright he was. As a 6-month old baby, he liked to sit on his bed and sort his very-brightly colored socks. At age 4, he could easily put together Lego sets intended for 12 year olds, and explain how to divide 5 Oreo cookies equally between 4 people. But at age 5, he couldn't tell which words rhymed, and at 10, he still couldn't tell how many syllables were in a word. He also had attention and impulsivity problems and was disorganized in his approach to solving complex problems. Bottom line -- a very bright little boy with specific learning disabilities. And his 'overall IQ' scores were nowhere near what everyone who knew him expected them to be.

And your daughter is in exactly the same situation. She's obviously very bright -- Don't you dare discount what you see and experience every day just because of some piece of paper! But just as clearly, she has some specific weak areas that are bringing down her 'overall average' scores on tests that rely on those areas. As Paige pointed out -- the answers are in the subtests. I'm copying in below a response I wrote on another thread that had to do with understanding the results of educational testing. Please forgive the cut & paste, but it's exactly what I'd say to you --

------

Both of my kids have had extensive educational testing though with very different test results and very different responses from the schools. They also both went through vision therapy, and it was *extremely* helpful for my older son. (My younger son has so many challenges and was doing so many therapies it was hard to tell how much difference came from what.)

I'm going to suggest that when the testing is complete, you schedule an extra-long meeting with the school to review the results. Why 'extra-long'? Because there will probably be 20 different tests to review, with test names and subtest scores that will be so familiar to them and so overwhelming for you. They'll go through them with you, but you need to be sure you have enough time to understand each one and to take enough notes that you'll be able to re-read and understand them yourself, and even more importantly, explain the test results later to someone else. Bring a pad of 3"x3" sticky notes with you plus a regular-sized notebook, and use both of these to take your notes. If they'll permit it, ask if you can bring a tape recorder. (It'll save them a boatload of time!)

Anyway, you need to review results at the 'subtest' level. They'll quickly give you the name of the test, if you're lucky, a brief description of what it's supposed to measure, and a quick summary of how your DD did on the test. Trouble is, their 'description of what it's supposed to measure' often isn't very meaningful. This is where you need to say "Excuse me -- Can you tell me a sample question or show me a sample problem for this subtest?" (They can't give you a copy of the test for copyright reasons.) Then write it down on the sticky note and stick it onto your copy of the report. Your next questions is "OK - So she's struggling/strong in this area. How, specifically, might this impact her in school?" Then write this down as well.

For example, a common subtest is called 'Digit Span' -- In one version they show her a series of numbers for a few seconds, then ask your DD to select it from a multiple choice list. In another version, they read her a list of numbers and ask her to write it down. They both say they measure 'working memory for a series of numbers' -- but one uses a visual input and offers a 'matched' response. The other uses auditory input and makes her rewrite it from memory. If part of your DD's problem is slow writing speed, poor hearing or auditory language problems, the second test could be skewed. If she has vision problems, the first test might be skewed. Or, she could get lucky on the multiple choice test. This is why you need to get so specific. They'll probably get a bit impatient -- BUT SO WHAT? It's really, really important that you understand these test results so you can fix the areas that are weak at the lowest level.

-------

Anyway -- Once you know how they got the '88', it'll be much less intimidating. And it will be much clearer to you that no single number - whether it's 88 or 145 - can say much of anything about your daughter.

But to answer your core question -- ABSOLUTELY this is evidence of a learning disability! And the MIND Inst. should be willing to say at least that much in a letter to the school to keep her qualified for SpEd until more information becomes available. (They may not be able to agree on a precise diagnosis, but ask them to put 'something medical-ese' - static encephalopathy is a good one - in a letter to the school.


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RE: Those who have experience with special needs children,

I'm glad you got the tests back. It's a great start. I'm hoping that you will be meeting with the MIND clinic folks who will then help you interpret the results and also help you develop an educational strategy to address what they find/recommend? This really is key. Its one thing to understand what is going on, it's quite another to develop a teaching strategy for it. I hope MIND does that? If not, I hope you can find someone other than your school district to help you understand and address the areas reported in the MIND document. Your school district has already shown that they are not prepared to teach a girl like your daughter. They don't know how. Or maybe they do. I'd also see if there are any specialty schools in your area that might meet with you for a fee to develop an appropriate educational plan for your daughter. We have about 4 well regarded schools within 1/2 hour of us that could help. Want to move to western burbs of Philly?

Good luck. This is just the beginning of a long and hopefully terrific journey. Your daughter will grow up and have a wonderful life! Don't doubt that for a minute! You are helping her achieve that goal be identifying her strengths and weaknesses and helping her use her strengths to compensate for her weaknesses. She's going to have a fabulous life!


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RE: Those who have experience with special needs children,

seeking,
you are getting lots of good advice from parents who have been there -- i haven't been online much because of dealing with issues with my DS (although he did graduate from high school yesterday -- we counted, and this was his 9th school since 1st grade - but he and we preserved and he graduated and is going to the college of his choice) -- i second awm's suggestion to consider nonverbal learning disability -- there's a lot on the web about NLD -- just google it -- sweeby is exactly right -you need to know exactly what tests Alex took and how she did on different subtests -- if you and your DH can both go, that would be ideal -- if you can't both go, take a good friend -- there will be a lot to absorb, and it's very emotionally draining, so I think it is very helpful to have two people there -- there is actually a body of literature on gifted kids with LD -- two good books are Smart Kids with Learning Differences by Rich Weinfield & others and Different Minds: Gifted Kids with AD/HD, Asperger Syndrome, and other Learning Deficits by Deirdre Lovecky -- a great general resource is All Kinds of Minds -- geogirl is right -- the MIND folks should be able to help you understand the results so that you can figure out what Alex needs to be successful in school - if they do not offer this, you need to find someone who can -- have you contacted the pscyh department of Cal State, Chico or the education school at UC-Davis? even if they do not have someone who can help you, they might know people in the greater region who can -- good luck!


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RE: Those who have experience with special needs children,

seeking-- have you read the latter posts on the homeschooling post above? They have nothing really to do with homeschooling at that point but rather with learning disabilities that might(?) apply to your daughter.


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RE: Those who have experience with special needs children,

I am sorry I haven't responded to any posts yet--believe me, I have been avidly reading each one!!! You guys have really kept me going and have given me so much assistance and support. I have much to tell you but no time at the moment. Just wanted to let you know that I've read everything as you've written to me and have utilized the combined knowledge! I will update you later today.

sjerin, no, I haven't read that. Thanks for calling it to my attention.


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RE: Those who have experience with special needs children,

I emailed the doctor from MIND and she gave me a very good synopsis of how her decisions were reached. Rather than rewrite it all, I will paste some my original email and her response:
Part of my letter:
I'm perplexed, in particular, by the discrepancy between her IQ scores and her
achievement levels and am not sure what steps to take educationally. For
now, she is being kept on an IEP but with no services. The district is
attempting to remove her from special ed, but we want to determine what is
causing her difficulties before we allow that. It seems to me that her
scores indicate some type of learning disability (such as non-verbal
learning disorder) but I'm no expert and perhaps I'm not seeing the larger
picture. I would like to be armed with as much information as possible so
that we can make informed decisions that are going to best assist Alex both
at school and at home. To that end, I want to make sure that we explore
all possibilities before accepting that this is strictly an emotional
disorder.

Thanks again for your assistance.

Her response:
As I said, I too am perplexed by Alex's profile, with her achievement
scores being so much higher than her cogntive skills. Alex does not have a
Learning Disorder, because Learning Disorders are defined as deficits in
academic achievement in the areas of reading, writing, and math (all of
which she excels in). She also does not have a cognitive disorder, because
her cognitive and adaptive functioning, though lower than her academic
skills, still fall in the average range and she does not display functional
impairements.

I spoke about Alex's case at length with Dr. Ingrid Leckliter, who is our
Nonverbal Learning Disabilities (NLD) specialis, on two separate occasions.
I initially had some concerns about Alex having NLD's, because of her
clumsiness, difficulty understanding where her body is in space (while
playing sports), planning deficits, and attentional dysregulation. However,
Dr. Leckliter pointed out several of Alex's findings that are not
consistent with NLD's, which are listed below:

-superior math scores

-high scores on the copying/arrows subtests of the NEPSY

-shy in preschool (most young children with NLD's are very gregarious and will try to attract attention)

-ability to mimic and model the behaviors and mannerisms of others

-appropriate handwriting samples for her age

Dr. Leckliter confirmed that she would not diagnose Alex with an NLD. Alex
does have poor executive functionig at times, and her attentional capacity
seems to wax and wane. Dr. Leckliter believes that this is more consistent
with a psychiatric disorder than with a learning or cognitive disorder. She
also expressed concerns that Alex might have Obsessive Compulsive Disorder,
based on her rigid behaviors at times. I explained to Dr. Leckliter that I
had diagnosed Alex with Anxiety Disorder and Rule Out Mood Disorder, and
she agreed that these are consistent with Alex's clinical presentation.

There is one other thing that I did not mention in the report, because I
did not want to cause any undue stress to you, and because I hoped that the
psychiatrist could clarify this issue. Both Dr. Leckliter and I are
concerned that Alex may have an emerging thought disorder, because of the
clang associations she made on the vocabulary test, perceptual
abnormalities when imitating block designs, her inattention to practical
detail involving her self-care, and her extreme fluxuation in her
attentional abilites. Some of the things you describe in your narrative are
also suggestive of an emerging thought disorder, such as:

"sees things differently than others"
"has odd ideas about things"
"made up own words for words she could not say"

Finally, the contributory family history of thougt disorder (grandmothers
psychotic features that accompany her bipolar disorder) cannot be ignored.
Thought disorders are certainly not my speciality, so I would like to
stress again that the best thing that can be done for Alex is a full
psychiatric work up. It is our impression that her "difficulties" are
psychiatric in nature, and not due to learning, developmental, or social
deficits. However, if she does have an emerging thought disorder, many of
the symtpoms may not fully manifests until she matures. As far as school
goes, she can qualify for Chapter 26.5 Mental Health Services through the
school district, if her emotional disorder is negatively impacting her
ability to function in the classroom.

I realize that this is probably not what you hoped to hear, and I wish
your family the best in your pursuit of the best services to meet Alex's
needs.

Sincerely,

I guess I don't know what to think at this point. Emergent thought disorder? I had to look that up, and it gives me the chills. Schizophrenia.



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RE: Those who have experience with special needs children,

seeking, hold on a minute - - don't go down that road yet. I had some of the same fears and it turned out to be related to bipolar (which has a better prognosis than schizophrenia, for those wondering why one diagnosis might be easier to take than the other). Bipolar has a component that is also associated with thought disorder. To my knowledge, schizophrenia is extremely rare in childhood. I've been where you are, so I really can sympathize with that pit you are probably feeling in your stomach, but what you have in your family history is bipolar, not schizophrenia, so hang on to that.

You definitely need expert psychiatric help in this case. This is not something for the local doctor to handle. Have you made any progress to that end?

Back to the testing, was there a discrepancy in the WISC subtests? I know the MIND institute said "no" to LD, but I'm not satisfied yet. I have learned not to take any "expert's" word on anything until I confirm it with my own research. Oh, and I question the expertise here - - this woman should know better than to label something she thinks is a mental illness as an "emotional disorder." Mental illness is a medical, biological illness, not an emotional disorder (which would presumably be environmentally caused) - - there is a big difference. Someone in her position, even though she is not a psychiatrist, should know the difference.

Also, even if there is no LD, that does not preclude special ed. Special ed is available for any disability that affects schooling, including bipolar or schizophrenia. Again, the classification, in my opinion, should be "Other Health Impaired," and NOT "Seriously Emotionally Disturbed." Back to the medical versus emotional label.

Hang in there - - we're here with you.


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RE: Those who have experience with special needs children,

Oh, paige, THANK YOU for telling me that. I did a quick google and all I saw was schizophrenia. I can deal with bipolar--at least I have experience with that and have seen that it can be dealt with in a way that allows the person to have a good, productive life.

As far as the WISC results, here is what was written in the report:

Verbal Comprehension Index = 98
subtest Similarities = 10 (Average)
subtest Vocabulary = 9 (Average)
subtest Comprehension = 10 (Average)

Perceptual Reasoning Index = 86 (Low Average)
subtest Block Design = 8 (Average)
subtest Picture Concepts = 8
subtest Matrix Reasoning = 7 (Low Average)

Working Memory Index = 88 (Low Average)
subtest Digit Span = 14 (Superior)
subtest Letter-Number Sequencing = 2 (Very Deficient) The report noted, in regard to this last subtest, that "Alex did not appear to comprehend the instructions of this subtest and was unable to correctly complete even the sample items with assistance"

Processing Speed Index = 91 (Average)
subtest Symbol Search = 11 (Average)
subtest Coding = 6 (Borderline)

I don't know how to analyze any of that.

I, too, have lingering questions as to the validity of some of the conclusions. I remembered a wonderful child psychologist that used to work with my dad long ago. Our families were close and I babysit his kids for several years before they moved away. My dad, actually, mentioned it to me and asked if I might consider contacting him. I jumped at the idea and we had a long phone conversation the other day. He is fabulous. He took notes and asked lots of questions. He asked me to send him a copy of the report and he is going to send me some tests or evaluation forms or something. The little girl I used to babysit? His daughter? Turns out they still live in the same town and she is a neuropsychologist specializing in autism. In fact, he said she was chosen out of the whole country to do some kind of study with a guy who is a preeminent autism specialist. I am very hazy on the names and details here, as I was madly thinking ahead as he was telling me this, but he said the guy's name was something like Goodstein and he's in Texas. Anyway, he is going to consult her on our case and get her input. Of course, it's nearly impossible to draw any conclusions from a phone conversation, but he felt it might be too soon to dismiss an LD or autism spectrum and told me he was happy to help and has the whole summer off. I told him we would do anything to assist him and would not hesitate to fly out to Colorado (where he lives).

Anway, it's always nice to have people in your corner, and I want to give a huge, huge, heartfelt thank you to everyone here who has helped and supported me so much.


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RE: Those who have experience with special needs children,

Seeking,
OK, you have something here. There is very significant spread among the subtests. It only has to be two standard deviations above or below 10 to be significant (if I remember correctly), and you have a score of 14 (four standard deviations above 10) versus scores of 2 (possibly suspect) and 6 (4 standard deviations below 10). So yes, you could be looking at a learning disability. What you need here is a well trained neuropsychologist to evaluate these scores. I'm glad you are on the path to finding one.

I have heard that Similarities is the test that best measures classic verbal intelligence, and she did dead-on average on that subtest. That should be reassuring for you.

I just focused in on this statement from the person from MIND.
"Learning Disorders are defined as deficits in
academic achievement in the areas of reading, writing, and math (all of which she excels in)."

This is an inaccurate definition. Learning disorders are not deficits in achievement, they are deficits in ability. This, to me, is a clear indication of this person's lack of expertise in the area of LD. Sorry to be so frank, but that's my opinion. What kind of doctor is she? Psychologist? How experienced? What is her background - - autism? LD?

I think the problem is that you are not dealing with an individual expert, but instead, an expert institution. At any institution the level of care you get can vary greatly. I do think, as I said above, that a very good neuropsychologist can make heads or tails of the learning aspects of Alex's profile. The psychiatric aspects should be treated differently, but a psychiatrist.

I know this all sounds daunting. But getting her the help she needs now makes such a difference - - the years go by quickly and this things all have an impact on the developing personality of a child.

I'm not trying to frighten you, just encourage you to keep on keeping on. Alex is lucky to have you behind her - - so many parents just put their heads in the sand and accept whatever is told to them because it is easier that way. You have good instincts and as you proceed down this path, you will learn to trust them more and more. No one knows your child as well as you.


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RE: Those who have experience with special needs children,

Seeking,

I am appalled that the doctor from MIND wrote you an e-mail telling you that your child might have an "emerging thought disorder". This is a totally inappropriate way to communicate such information. I recognize Chico is not that close to Davis, but if you couldn't have a face-to-face conversation, a phone call would have been more appropriate. Be that as it may, you now have to figure out where you go from here. As far as I know (and I am not a mental health professional -- I just have been dealing with such professionals for the last 16 years for my DS), Paige is right -- schizophrenia is extremely rare in childhood.
As Paige notes, you really need to consult with a child psychiatrist.(Did you see both psychiatrists and psychologists at MIND? I would have thought that one of the best sources for child psychiatrists in your area would be UC-Davis School of Medicine.) Having the help of your family friend is great, as he will be able to help you understand the results of Alex's evaluation and what the next steps should be. He and/or his daughter also probably know psychiatrists they can recommend to you. As you have undoubtedly realized, you have a long road ahead of you -- it's challenging when kids don't easily fit various DSM diagnoses -- and such kids may need to be evaluated by several specialists to figure out what is going on. (One problem for us in figuring out how to help our son has been that he has aspects of many DSM diagnoses, but doesn't clearly fit them.) It is clear from your postings that you have the strength and resolve to help Alex. Do what you need to do for her -- and while you are at it, try to make sure you have plenty of support for you, your DH, and your other kids. We have always been very open about our son's issues, and we have had remarkable support from our community -- everything from offers to help with our other son (when we were busy taking our challenging child to evaluations) to people just being available when I wanted/needed to vent and cry. Good luck!


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RE: Those who have experience with special needs children,

Wow! You guys just keep coming through for me.

Paige, the doctor's business card says:

Licensed Clinical Psychologist Specializing in Developmental Neuropsychology

Developmental-Behavioral Pediatrics
UC Davis M.I.N.D. Institute

She works in the autism part of MIND. I am so glad to read your post about definitions of LD, plus I feel validation for my sense that there are things that aren't being properly accounted for in the report. It makes so much sense to hear how you put it, I think the problem is that you are not dealing with an individual expert, but instead, an expert institution. At any institution the level of care you get can vary greatly. Ironically, and not something I was pleased to learn, the doctor told us she had interned 10 years ago under...our case manager! The one who wants Alex off of special ed. What are the odds.

brachl, yes, I too was surprised when I received a return email with all of that in it. In my initial email to her, I had requested to set up a time when we could have a phone conference. I was quite surprised when she simply emailed me back. I had left a voice mail message for her last week that wasn't returned, so that's why I resorted to email.

I forgot to mention that I have a request in and referral from my pediatrician to see a child psychiatrist and child neurologist at MIND. They will do back-to-back neurology and psychiatric appointments, as they have both specialties there, I was told by the front office person. However, when I mentioned this to the psychologist in my email and asked if there was some reason she did not refer us, she said that it was her understanding that you had to have 2 diagnoses (like autism and bipolar) and that it had to be a medical referral, which she can't make. She offered no suggestions on child psychiatrists, though we asked twice for recommendations. I didn't even know they had them at the clinic until I called to talk to her and heard it on the voice mail message! Strange.

Which leads me to another question: should I continue to pursue a neurological evaluation? No one has indicated it would be a good idea, I just thought it wise to address every area. When I've asked all of the various people I've seen (MIND, pediatrician), they have basically dismissed it as unnecessary. Should I keep pushing for it or is this something to let go?

Anyway, back to the psychiatrist. I am supposed to learn within the next 10 days whether or not Alex will be accepted as a patient by MIND. If not, I have plan B in place, which involves a trip to Stanford. My friend in Colorado is someone who is outstanding in the field and who should be able to shed more light on Alex's test results. I don't intend to lay her care at his feet, just get his impressions and expert opinion (along with his daughter's). I do not want to go to drastic measures (like medication) until/unless I'm sure it's warranted.


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RE: Those who have experience with special needs children,

seeking, I only have a minute to post but I would be wary of using anyone else from MIND. At any institution there are politics and it might be difficult for a doctor doing a second evaluation to disagree with the initial evaluation from another doctor at the same institution. I would seek out a private, unaffiliated psychiatrist and neuropsychiatrist, in private practice, who was trained at an excellent school but now has the independence that private practice brings. At this point I would no longer want the school to be paying for it - - I would go through health insurance. I would not even tell the school the names of the doctors you have appointments with - - just say you are seeking psychiatric advise and will report back when you have an evaluation. THat way if you end up with someone less than desirable, you can move on without the school knowing about it.

I also agree with brachl that emailing a parent about a possible thought disorder is completely unprofessional, and renders the evaluation all the more suspect, as does the fact that this person interned under the person making the educational decisions for your child. This does not strike me as a totally independent evaluation - - there is a potential here for school influence.

Yes, I do think you should still pursue a neuropsychologist. A psychiatrist will not be able to evaluate the educational aspect of this.

Good luck!


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RE: Those who have experience with special needs children,

Seeking,

This is a lot of information to sift through and process. Take your time. Take deep breadths. You are definitely taking the right steps to help your daughter. Hugs to you and your family.

As you navigate through the immense amount of information you have in front of you, keep in mind that the next few years will be a PROCESS. You are in it for the long term, not the short term. You are not looking for a solution for her just in September; you are looking to have the mechanisms in place that will allow whatever changes she may need over the long term. You are setting up the system for her, not finding some sort of ultimate life solution for her at the age of 6.

So, if it takes you your daughters entire second grade year to understand what is going on with her, thats ok. Second grade is not that big of a deal in terms of academics; as long as she leaves second grade with her self esteem in place. If the MIND docs are correct and even if they are not, then you have a lot ahead of you. Focus long term, not short term.

I guess I see this as a two pronged approach. First, is helping your daughter navigate through her life and second is to ensure that she is being given a proper education. Sometimes you might find that you dont have time to do both. Sometimes you will. To that end, you are taking positive steps forward by meeting with a child physiatrist and further pursuing her possible mental health issues. These are positive steps forward.

Im not sure what benefit it is in trying to argue that your daughter has an LD or not, at this point. The MIND docs say no LD, yes to "Other Health Impaired". So, she qualifies for an IEP. Period. The whole point of an IEP is to give her the environment and help she needs to be successful in school. It gives you the mechanism to change things as her needs change. You can change that IEP every month if you have to. The IEP is the mechanism by which you are given the authority or the right to make the needed changes. For second grade that should be enough. What is the purpose of a particular LD diagnosis for you in 2nd grade? Nothing. So, for now at least, as long as that IEP is in place and you have a mechanism for change, you dont need to focus on the second prong. You can focus your limited energies (b/c everyone only has so much time to give, even if its 24 hours a day) on the first prong: What is going on with your daughter?

You are going forward on the first prong. You are finding a child psychiatrist that you can develop a long term relationship with and have your daughter meet with if needed over many years. Find the person to help her. She will need this whether her issues are bipolar or whatever other diagnosis occurs. Focus on that. School will take care of itself, at least for now. Its only second grade.


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RE: Those who have experience with special needs children,

Seeking,
Great advice from both Paige and Geogirl. Paige is absolutely right about being wary of using anyone else from MIND, as there are institutional pressures and politics that might affect any evaluation of Alex. Stanford is, of course, a great option, as is UCSF. Ultimately you will want someone closer to home to see your daughter on a regular basis. When you get to that point, you may end up with someone who graduated from UC Davis or has other close contacts there. That may be inevitable in such a relatively small community and is not necessarily bad for Alex and you. We live in Chapel Hill-Durham, and it seems most people in the mental health arena know each other. We have not found it a problem when we have consulted different professionals. They may have strong opinions about the other professionals we have used (everyone in town seems to have a strong opinion about DS's psychiatrist), but I don't think it has affected their professional judgment. (As Paige noted, it is a bigger issue when people are part of the same institution.) I just think it's the nature of life in these smaller communities.

I think Geogirl's framework makes a lot of sense. While the issue initially arose through the school process, there are 2 issues going on -- her education and her mental health. At least with our son (and I would never presume to tell anyone how to approach this challenge with their child), we felt that we really needed to focus on getting our son as mentally healthy as possible, and that he could catch up academically later. So he was in several programs that were not academically-challenging, but that helped him with his other issues. Now that he is going off to college, I worry a little that lack of rigorous academic challenges may make his freshman year a little harder, but he has already faced so many other issues that I think he can handle it.

Good luck and be strong!


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RE: Those who have experience with special needs children,

So much going on --- I'm sorry to have missed yesterday, but Paige, Brachl and Geogirl have given you some excellent advice. I'd also like to chime in my total agreement on a few key points --

- That while MIND is fabulous, some of the comments made by your particular specialist don't sound so great. There are definitely some striking discrepancies in your daughter's subtest results, and if they don't fit some 'technical' definition of 'Learning Disability', they are nonetheless significant and should be explored. That particular conclusion (not LD) sounds like one she learned from her mentor...

- Your daughter is still very young -- too young really for IQ tests to be statistically valid. I bring this up because of that one test where she scored so low. That one test is really dragging down her overall scores - yet she didn't even understand the directions! It's quite possible that when she is slightly older, she'll have no trouble at all understanding what to do -- a purely developmental-readiness issue. And then her entire profile would change. Again - This is something a skilled neuropsych should tell you.

- You wrote: "plus I feel validation for my sense that there are things that aren't being properly accounted for in the report." Don't ever disregard your instincts when it comes to your daughter and her issues. You're not a mom in denial, and your intuition is finely honed when it comes to your daughter. Don't be reluctant to question 'the experts' when their conclusions don't fit what you know inside.

- Like Geogirl said -- You're in this for the long haul. Please don't expect to get 'all of the answers' right away, because if you're like most of us, you won't... Can't. It's likely to take several years before you really get a good diagnosis and can have confidence that it's right. If you insist on trying to find all of the answers now, you'll frustrate yourself, frustrate her, and any answers you get may not be accurate. As Alex develops and matures, certain things will fall into place, and other deficits will become apparant -- things will change. So try to develop a two-track approach - short-term and long-term - to help you stay on course. Have a good general long-term direction and a few short-term goals, then pace yourself.

- For the short term, I'd suggest identifying what it is you want the school to do for her, and finding a way to keep her in the SpEd system so she can get it.

- For the long term, I'd try to build a team of experts who can follow your daughter's development and work with you to help keep you all on track. A child psychiatrist with expertise in bipolar, austism, anxiety disorders and perhaps schizophrenia who listens to you would be a great find.

Hang in there Seeking -- You're doing a great job through a very difficult time.


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RE: Those who have experience with special needs children,

Seekingadvice, I've been keeping up with this thread but haven't contributed because I don't have the personal experience of the others and am not "in the conversation." But as a mother, I know how difficult and upsetting all of this is.

Also as a mother, I wanted to tell you a couple of things that may or may not be relevant. First, it sounds like the IQ test was way off.

My darling stepdaughter went through a period at around age six (before I knew her) when she had mysterious and awful tantrums at home though she was perfectly pleasant elsewhere, as well as a good student in school. She had all kinds of tests and therapy, some of it at UC Davis because they live near there. They never figured out what was wrong! She seemed to outgrow the tantrums and now she's a delightful college student.

And if you haven't already, I would urge you to have your daughter tested for allergies. Allergies have more power over our brains, bodies and hormones than many of us realize. I think you said her outbursts happen more in spring and fall, and this is a clue. If where you live is anything like the Sacramento/Davis area, you've got the allergens for sure. Testing might be really worthwhile.

Good luck with all this. Your daughter is fortunate to have you for a mom.


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RE: Those who have experience with special needs children,

Wow, for some reason I hadn't even considered the idea that taking her back to MIND might not be the best plan. Thanks for opening my eyes to that! I think you guys are absolutely right about that and I'll go elsewhere.

My question was not should I take her to a neuropsychologist, but should I take her to a neurologist? Like for an eeg or MRI or something?

geogirl and sweeby, I'm so glad you wrote about taking this slowly and going after one thing at a time. I am the type to want to take the bull by the horns and wrestle it to the ground, LOL. I've been going full speed ahead to get answers and solutions, and of course you are right--this is not something that is going to be figured out in a few weeks.

As far as whether or not Alex has a LD, I do think it is important from two aspects. First, it seems like it would be much easier to help if a child is struggling due to an LD if you have identified that there is one, and second (and most important), I do not want to accept that this is all psychiatric in nature--meaning, most likely, the recommendation to medicate--if there is the possibility that the anxiety and stress are the result of frustration rather than chemical imbalance. I am certainly not ruling out meds, but I want to be as sure as I can that it is warranted. It is my last recourse.

I thought about this last night (who needs sleep, right?) and concluded that the MIND psychologist was not talking about bipolar when she said thought disorder. The reason I think this is because she had already mentioned bipolar under Mood Disorder and had talked to us about it in person. Since she was so reluctant to mention it, I do think she is talking about something of a psychotic nature. And I will be honest here--after much more thought last night, I decided that that is quite a leap from what she observed in the number of hours she spent with Alex. First, it is based in part on some comments I made about Alex, which certainly might be misconstrued out of context and don't really strike me as that big a deal anyway. "She sees things in a different way" and "has odd ideas" were very true for her mother at that age. Second, she mentions her "clang associations." I watched that part of the test. When Alex was asked to give an opposite for a word that was on the paper, she did it once and then looked bored, suddenly got a big grin and decided to rhyme the rest of the words. So, instead of saying "day" as the opposite of night, she said "light" and so on with the rest of the words. She knows perfectly well what opposites are and likes to play it as a game in the car, so I didn't give it much thought except that I realized she got all of them wrong except the first one. It's hard for me to believe that this is a red flag for psychosis. Third, the fact that she made up her own words was not at all odd to the audiologist who tested her at that time. Alex had a developmental problem that meant she was unable to hear sounds as they were; her brain heard different sounds and therefore she had great difficulty speaking. She was so smart, though, that she came up with her own system for communicating with us using the sounds she knew she could make and that would be understood by others.

Oops--I have to go now because Alex is coming in. I'll continue later.


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RE: Those who have experience with special needs children,

I guess I got a little too worked up. I might be overreacting right now so I will wait a bit until my brain cools off before trying to figure out what everything means (or might mean).

In the meantime, I got a call last night from my friend the psychologist. It was very cool! He actually responded in much the way you guys did, and in a tactful way suggested that the MIND report, in his opinion, was seriously flawed and/or incomplete. He is going to email me all of the particulars on that, most of which he discussed with me at length but which I would have difficulty restating today. What I do remember vividly is that he told me that it is simply impossible for Alex's IQ score to be so far below her achievement scores, as in all areas she not only excelled but, in most, was in the genius category. He said that the MIND explanation (that maybe she is an overachiever) is ridiculous, as you can't "overachieve" from an 88 to off the charts. Did I mention that her achievement scores in some areas were so high the scale topped off and they couldn't be measured?

He also felt there were things that were not accounted for, things that were left out, and conclusions that he felt were reached prematurely.

Oh yes, he also gave me detailed information on how to proceed with regard to the IEP and school district. He's going to help us out there, too.

All in all, I feel better about things today.


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RE: Those who have experience with special needs children,

Seeking,
That's wonderful news. Having someone you trust to help navigate the mental health maze and special ed labyrinth makes the journey so much easier. Good luck!


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RE: Those who have experience with special needs children,

That IS great news! (You see!?)

"What I do remember vividly is that he told me that it is simply impossible for Alex's IQ score to be so far below her achievement scores, as in all areas she not only excelled but, in most, was in the genius category. He said that the MIND explanation (that maybe she is an overachiever) is ridiculous, as you can't "overachieve" from an 88 to off the charts. Did I mention that her achievement scores in some areas were so high the scale topped off and they couldn't be measured?"

A very, very similar thing happened to the son of a good friend of ours. He has Asperger's Syndrome and had some pretty severe language processing difficulties as a young child, so his overall IQ score at age 6 was estimated about 70. Four and a half years later, his comprehensive retests estimated his IQ at between 125 and 140. (But even a high "number" can't begin to sum up a child like him whose abilities are so uneven.)


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RE: Those who have experience with special needs children,

Oh yes, sweeby, I forgot the other part of what he said, which was what many of you mentioned already (or is similar, at least). A child who is autistic, on the spectrum, or possibly something else (I'm not sure) is frequently able to almost instantly memorize large amounts of information. This doesn't mean that they have the ability to use that information in higher level thinking ways, though. This can be especially misleading at the younger ages, when comprehension measures are often merely asking the child to recall information given previously. This might be true for Alex. Alex could easily recall a sequence of things, but when asked to remember them and categorize them in a different way from the original, she had a lot of trouble. So, while she may have an amazing ability for memorization and recall, she may not be able to construct new information with it. He is going to help us explore that further.


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RE: Those who have experience with special needs children,

Seeking - I haven't been involved in this topic and have limited experience with it. In reading about your experiences with Alex, something occured to me about your daughter's tantrums:

Is it possible that Alex's tantrums are her version of a tensional outlet? I read somewhere that lots of kids experience them around her age. Ticking, grunting, throat clearing, nail biting, nose picking, even tantrums can suddenly begin in a child. And just as suddenly end. This period of tension tends to correspond with a time when the brain is busy "pruning" synapses. Whatever that means.

My own son went through a pretty alarming 2-3 month stage of throat clearing and ticking (mainly when he was relaxing at home!). It worried the heck out of me. But his symptoms just cleared up and haven't come back. Kind of like what Woodlander described with her daughter.



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RE: Those who have experience with special needs children,

Hi seeking,
I just wanted to check in since I kind of vanished for awhile. We're having our own issues here. We're now looking at a diagnosis of OCD. I'm not sure if it is in addition to or instead of some of his other stuff. DS doesn't have the telltale compulsive behaviors (repeatedly flipping a light switch or washing hands or whatever), so it was not an easy diagnosis to reach. But that is a different thread.

I'm glad you've found someone to talk to whom you can trust. It makes all the difference. Keep us posted!


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RE: Those who have experience with special needs children,

Thank you, busymom and paige! I too have been off the radar for a bit. I was visiting my cousin in Santa Barbara--he had extensive surgery so my sister and I wanted to see him. It was soooooo wonderful that we had a chance to do that. My sister and I were able to make a mini "girls road trip" out of it, which was also nice, but mostly it made us feel better to be able to see our cousin and hug him. It's funny how it sometimes takes something awful to prod us into taking the time to visit those we love.

After I got home, I had time to wash and pack again because we (dh, kids and I) left the next day for Capitola (near Santa Cruz). My FIL turned 80 and my SIL rented this super cool beach house where we were able to celebrate the event together. It was my MIL/FIL, 2 college age nieces, SIL/BIL, and my family of 5.

So...I haven't been home much and I've also just shut down on the whole situation for the moment. Today is Alex's 7th birthday, btw. I simply can't come to terms with things--I look at her beautiful, smiling face and I can't believe, or perhaps don't want to believe, that there is anything too dire lurking inside...

busymom, I sometimes wonder if this is something that is part of her expanding awareness and is simply her method, for now, of dealing with stress. I remember other phases that she eventually worked through as she learned ways to better cope with things. Thank you for bringing that up.

paige, I'm sorry things are once again churning around. I think that's the hardest thing about all of this--it is just not something that you can point to on a lab report and identify. There is always a question about whether or not the diagnosis is accurate and/or complete. I hope that this new diagnosis helps you in working with your son.


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RE: Those who have experience with special needs children,

seeking, I have followed this thread with interest, concern and empathetic mother-angst. I have no suggestion or advice - this road is not one we have traveled - but I am in awe of the power of the internet as exhibited in this thread. Truly this is an example of its highest and best use- to bring together from coast to coast, from Texas to Canada, to support, offer explanation, ideas for solutions and advice for a shared issue of great importance.

Happy birthday to Alex and here's hoping for a resolution and peace of heart soon!


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RE: Those who have experience with special needs children,

A belated thanks, pecan! The birthday/party was a big success.

UPDATE: Just got back from a trip to Colorado to have Alex tested again by my friend the psychologist! What a difference. All 3 team members work with autistic/AS kids all the time and are not only familiar with testing for it but 2 of them train others in how to administer and evaluate those tests and are the top 2 in the state.

They did extensive testing, pretty much mirroring the MIND tests but using stuff Alex hadn't seen before. Each of the 3 wrote an individual evaluation of the results and then got together to compare notes. They all had the same conclusion--Alex is autistic. Where MIND had given her a score of 2 (not sure what the scale is; something like 0-20) on the autism test and ruled it out, their score for her was a 13. They had perfectly logical explanations for everything and said that it was obvious the person who administered the test at MIND was very inexperienced and was "fooled" by Alex's...I forgot the term they used, but her ability to give a scripted response in a given situation. For example, it appears that Alex has learned, likely in her playgroup, how to get along socially by following a script in her head when presented with a stimulus, the way we might respond when asked "How are you?". They found her to talk in monologues that would rarely engage the other person, and while she would occasionally make a perfunctory remark if that person interjected something of his own, she wasn't interested in sharing their experience but wanted to get back to her own. MIND viewed any response to the other person as conversation.

They also showed me how MIND had not integrated the autism test with the other tests and parent interviews. In fact, they showed me that MIND had all of the data to support a finding of autism right in their report but had failed to even consider it.

They told me, "This isn't a little girl with a thought disorder. This is a little girl who is under absolutely enormous pressure and her stress/anxiety are the result of what she must cope with due to her processing problems." They told me she is brilliant in certain areas but very deficient in others.

At this point, she is able to look like a normal child, even a gifted child, but by the time she is in 3rd or 4th grade she is likely to have major difficulties without help (they specifically mentioned long division). She has astounding memory, vocabulary, reading and language skills, but absolutely bombed on tests that required her to find the shortest path to a point on a chart or reassemble memorized information in a different way. What appears to be creativity is her ability to use pieces of stories she has memorized or copy someone else's ideas. She has a vast warehouse of memorized stuff in her head to choose from so she just pulls things out when she needs them.

They are going to send me a full report once they write it up and include information for the IEP etc. They have suggestions for us to use to help train Alex not to simply follow a script all of the time. It's a program that I cannot remember the name of at the moment - I think the initials are RDL or RDI or something. Anyway, I will get an email tomorrow with the books and so on that you use.

So that's it for now! The CO team assured me they have reams of information to support their diagnosis and to help us fight for Alex's right to services. Since one of the team members (that I used to babysit, LOL) has been doing training under a very pre-eminent autism expert and was selected as one of 50 in the nation to do so, I feel confident in her assessment. I wish I could convey how professional and logical it all was! It was also great that we stayed at my friend's house so they had a chance to observe her outside of the testing environment. They saw her genuine interactions and behaviors.


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RE: Those who have experience with special needs children,

Seeking-- I'm so happy that you finally have a more logical and likely diagnosis (from what you have described,) because now you and Alex can move forward. Good luck with the (school) "fight", and keep up the pressure for all the services your daughter deserves. And thanks for keeping us updated!


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RE: Those who have experience with special needs children,

Seeking, It's wonderful that you had such a good experience with Alex's eval (particularly after such a horrible experience with MIND). I am sure with the thoroughness of the eval and the resulting report that you will be able to get services for Alex. Good luck!


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RE: Those who have experience with special needs children,

Thanks, sj and brachl!! I'm feeling sooooo good right now, which is odd in a way but I'm sure you guys understand. It's so much easier to take on a known than to try and battle an unknown. Next step is the IEP. Right now we're coasting on the old, unsigned one.


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RE: Those who have experience with special needs children,

Seeking,
it sounds like you have a wonderful resource in your friends in Colorado, but one resource that I have been told is great (by friends of mine with children who are autistic) is TEACCH - I live in Chapel Hill and have met many people who moved to our area because of having TEACCH here -its website is http://www.teaach.com -good luck!


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RE: Those who have experience with special needs children,

brachl, thanks so much for the link! That site is very informative. I've only skimmed the surface so far but what a great resource! I have a good friend in Fort Mill that I visit every now and then. I don't know how far that is from Chapel Hill but it might be neat to check out TEACCH.

BTW, the link above says 'teaach' instead of 'teacch'. I figured it out easily enough though since you gave the name of the site a couple of other times. Just wanted to let others know that it should be www.teacch.com if they want to check it out.


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RE: Those who have experience with special needs children,

That's great Seeking! I know what you mean about the relief of finally knowing what you're up against. And from what you've written, it all sounds very logical, reasonable and convincing.

Funny - Just thinking about some of my own son's conversational habits, I can see why someone might conclude he has a thought disorder. Like Alex, he's picking a pre-scripted conversation out of his bulging memory bank that he thinks might be a good fit. Sometimes it is. Other times, it's a little bit 'off' in a horrifying way. You'd really have to be familiar with what he's been exposed to to know that the particular story he just told is from a Danny Phantom show he saw two years ago or from the news last week.

And the reciprocity of conversational flow is a really key point. It DOES sound like the MIND evaluator let Alex totally lead the conversation. And there can BE a meaningful and appropriate conversation on certain subjects. John can discuss The Beatles, NASCAR, light trucks and SUVs, and several other favorite subjects in a totally appropriate way. He has a vast store of things to contribute to the conversation and is interested in learning what the other person knows about the subject -- so reciprocal interest. But try to talk about lions and all he can do is pull something from his memory bank - and The Lion King is about all he's got. So there will never be a meaningful conversation about lions.

Just FYI, RDI is based here out of Houston, though they do seminars all over the country. It's a time consuming and expensive program, but for some kids, seems to make a real difference. While John has met with the doctors who run it, we haven't tried the program for John because my 'mommy instinct' says it's not exactly what he needs. They didn't seem to know quite what to make of him -- which I guess is not really surprising since no one else does either... That's not to say it might not be exactly what Alex needs -- who knows?

Thanks for the update and good luck with the next stage of your journey.


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RE: Those who have experience with special needs children,

I've been following your saga for many months -- but have not posted because I have nothing substantive to contribute. I'm very glad you have a diagnosis that will help your daughter get what she needs. Hope things get better from here!


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RE: Those who have experience with special needs children,

Sweeby, I'm always interested in your anecdotes about your son and what you've been through. It helps immensely! Yes, Alex is able to converse on "her" subjects, also, though she tends to monopolize the conversation. I'm not sure she is hearing too much beyond what she is saying at the moment and planning to say next, LOL. She kind of falls flat when it comes to areas outside her interest and experience, but then so does her mother :)

ellene, thank you so much for your kind words. It has really helped sustain me and keep me proactive, knowing that there are so many of you guys out there rooting us on.

Now here is something new. I have been doing some research online (can't seem to help myself). Without having a specific diagnosis at this point, I am not sure what I'm looking at--are they indicating Asperger's? Something on the spectrum that I'm not familiar with? I doubt we're talking autism, if that is a word with meaning anymore, as Alex is so high functioning. But anyway, in my research plugging in symptoms I've come across something called hyperlexia. It appears to fit her to a 'T' and many of the questions the team asked me seem to indicate that they may have been thinking the same thing. Do any of you guys have experience with hyperlexia? Here is a synopsis:
Hyperlexia: A Teacher's Guide

The word "Hyperlexia" means "advanced reading.: Trying to define hyperlexia any further is very difficult. It is officially listed as an autism. Though hyperlexics may be seen as having some of the same characteristics as those with autism, hyperlexics should actually have a designation of their own. Those who have worked with both disorders do not all agree that hyperlexia is a subset of the autism umbrella. I certainly do not.

While the AHA has no working definition, children with hyperlexia are at risk of being misdiagnosed as having any number of the following: autism, simple language delay, hyperactivity, hypersensitivity, ADD, ADHD and more.

Is there a Hyperlexic in my Class?

Hyperlexics do have several common characteristics. They are generally perfectionists and therefore do not play competitive games or take tests well. They have a deep need for routine. They are rigid in their beliefs and become very upset when their expectations are not met. They have a "circle of comfort." That is, they have a set number of people whom they accept in their arena of concern. If you are allowed in this circle, you are deeply loved. If you are not allowed in this circle, you will have difficulty communicating with and gaining the cooperation of the hyperlexic. It may seem as though you don't even exist to them.

The most problematic characteristic of Hyperlexia is the almost complete inability to absorb social cues. Everything is is black and white for the hyperlexic. Either you are a saint for doing good or your are the devil for doing bad. The hyperlexic uses this ruler on all social situations and you can imagine the difficulties that would arise. But the really difficult thing to watch and deal with is that the hyperlexic uses this same harsh ruler on themselves all the time!

If you have a Hyperlexic in your Class

The first thing to do is plan a meeting. You should have a meeting with the following people BEFORE SCHOOL STARTS (remember the child's pre-expectations are critical for a smooth and successful class environment): the primary teacher, any other secondary teachers (including aides), the parents, and the principal. Getting any other information from previous teachers will be helpful. Sit down and discuss what works, what does not work and your goals. Either an IEP or a 504 should be in place. If one is not, start one now.

Your hyperlexic student has serious challenges that will need to be kept in mind. While the hyperlexic's ears work just fine, the auditory pathways in the brain are poor and don't work nearly as well as the visual ones. All verbal communication is seriously compromised. Keep this in mind when planning direct instruction. Surprise is not a good thing in the hyperlexic's life. A break in routine is very stressful for those not able to innately understand social cues. The hyperlexic will also have a very difficult time making close friends.

The hyperlexic does have some very rare gifts that you will need to take full advantage of. They have a deep desire to succeed academically and socially. They have near perfect memories. But above all it is their incredible ability to read and comprehend everything put in front of them that you will need to keep in mind., They are also very good writers. In traditional academia, they are excellent students.

Reading is the key. If you want to get inside the "circle of comfort", write short friendly notes. If you want to pass on a simple bit of information, write it down. If you want them to understand a complex idea, find a book on the topic and have them read it before teaching the unit. If you want them to act a certain way, write a play and rehearse with them from the script. If you want to teach a set of rules, have the student write a BOOK OF RULES with you. Leave extra pages blank and use them later. You will need them.

Do not rely on verbal directions totally. Do not under any circumstances create a power struggle between you and the hyperlexic. They do not behave stubbornly because they like to. What you may see as stubbornness is really a part of the disability and they have no control over it.


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RE: Those who have experience with special needs children,

Interesting snippet on Hyperlexia -- and I've no doubt that if you say the shoe fits Alex, then it does. (It totally fits my nephew as well.)

The only part I'd disagree with is the author's contention that it's not part of autism -- I think it is. This is NOT to say that all or even most very early readers are autistic or hyperlexic -- I don't believe that for a minute, and think many are simply very bright. But I believe those who have the other characteristics mentioned by the author are somewhere in the autism spectrum, and that it's those characteristics that put them in the autism arena. If a student had all of those same characteristics except the precocious reading, there would be no argument to an autism label. Why should exceptionally early reading preclude autism?

Really, I think it all boils down to how you define things -- and unfortunately, this is an area where there is little agreement, even among experts. Some professionals define very narrowly, and others recognize wide areas of overlap. But to clarify, I'll try to list what I see as the most narrow definitions:

- 'Autism' -- A person with a very restricted social repertoire, visible stimming, limited language, poor eye contact, and a cognitive impairment; would exclude anyone from a 'pure' Autism label who was not significantly impaired in any of these areas.

- 'Asperger's Syndrome' -- A person with extensive vocabulary and language skills, frequently hyperlexic, a restricted social repertoire, may have poor eye contact, often a high IQ; would exclude anyone with a language or speech delay or a cognitive impairment. Most include AS as a category of autism; a few do not.

- 'Hyperlexia' -- Extremely early reading, generally self-taught, often accompanied by poor comprehension and literal interpretation, accompanied by poor social skills and other behaviors described in your snippet. Most often described as a symptom of AS.

- 'High Functioning Autism' -- Autism with better language or social skills and/or minimal cognitive impairment.

- 'PDD-NOS' -- A person who does not fit completely into one of the other categories. The great dumping ground.

- 'Autism Spectrum' -- A cloudy area that probably encompasses all of the above and areas in between that aren't specifically covered.

OK - So those are the super-narrow definitions. Trouble is, the experts don't really even agree on even these! And most kids have one or two areas that put them outside of these narrow definitions and into the gray areas. To illustrate, one of the world's foremost Asperger's experts, Tony Atwood, says "What is the difference between Asperger's Syndrome and Autism? -- The spelling." Others passionately disagree and consider Autism and AS very distinct.

Personally, I view it like a big pot of soup: Put a big pot onto the stove and toss in your ingredients: language difficulties, problems with social interractions, difficulties regulating emotions, sensory issues, coordination difficulties, cognitive issues, poor eye contact, hyper- or dyslexia, speech delays or disorders, stimming, anxiety or risk-taking, perfectionism, echolalia, resistance to change, obsessions... Each cook's batch of soup is slightly different -- some has more vegetables, some more meat, some is more stew-like, some has a thinner broth, some is more highly spiced. But it's the same basic recipe and we're fiercely debating the 'proper' name to call our particular soup.

So call your own soup whatever feels right to you. Let your expert name your soup according to his/her own classification system. And get an official name for your soup that your school will recognize and help with -- which could be different from either of the above.

Make mine chicken tortilla with cilantro... ;-)


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RE: Those who have experience with special needs children,

I think Sweeby is right on --there are great variations with these kids, but many of them have similar issues and diagnoses are often all over the place. I decided long ago that I was not going to worry about labels -- I just wanted to figure out what therapies, interventions and/or medications might help my son, whatever his diagnoses were. Sweeby is also exactly right that it's really important that you get a diagnosis that the school district recognizes. I have a friend whose son has been diagnosed with a Non-verbal learning disability, and apparently the Chapel Hill schools don't recognize that as qualifying for services, although the schools here have great familiarity with a wide range of autism diagnoses and behaviors. (Thanks, Seeking, for pointing out that I got the initials for TEACCH wrong; I can never remember if they have 2 "A's" or 2 "C's in their name, although I have used their services and know several people who work there.)


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RE: Those who have experience with special needs children,

Thanks for the clarifications! I read up on hyperlexia and saw a good web chart that demonstrates how it overlaps with Asperger's and autism. I saw that there was a lot of controversy about how these things fit together and whether something is or is not on the spectrum. I believe that the fact that the team came up with a ADOS score of 13 may help us when it comes to school services, as I think we can argue autism. Our district does not consider Asperger's or HFA as qualifying for an IEP. I doubt they would have heard of NVLD or hyperlexia and if they had, I seriously doubt they would qualify, either. I emailed my friend to ask what diagnosis they were considering and they are still writing it up, but he told me they were talking Asperger's. I don't know what that will mean yet in terms of services.

I totally agree with both of you about labels!! Since even the experts are unclear how these things relate, I would say it is less important to get an accurate label than to get a program together that works for the child (and my guess is that there are many 'syndromes' out there that are as yet unidentified). The problem with that is that the schools are married to labels and require them in many cases! It's frustrating sometimes to be admonished about labeling children by the very people who demand it for services.


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RE: Those who have experience with special needs children,

From what you've written, I would also suspect your team would consider Asperger's most likely -- and that's probably the one I would use myself. BUT -- If your school doesn't consider Asperger's as 'IEP worthy', I'd call the team first thing Monday morning, tell that that one little fact, and ask them to write 'Autism' (with or without hyperlexia) instead. You might win a legal challenge on Asperger's deserving an IEP -- but why go to court if the diagnostic team can simply use another word?

My son's school is the only one that every diagnosed him with plain ole' Autism. And even though I don't feel it's accurate, I leave it alone because that diagnosis is best for getting him the services he really does need.


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RE: Those who have experience with special needs children,

I agree with Sweeby -- you want the eval to use language that your school district understands and is comfortable with. The bottom line is that you want Alex to get the services she needs and is entitled to under the IDEA -and with as little hassle and unpleasantness for your family as possible.


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RE: Those who have experience with special needs children,

Hi Seeking (and everyone),
I'm so glad you found someone who could really understand Alex and help you find the right diagnosis. My computer has been down for a couple of weeks so I haven't checked in until now. I just wanted to say, good for you for sticking by your girl and getting her the help she needs! I didn't read all of the responses, but keep in mind that the school might not automatically agree with your eval, because it wasn't done by their people. So go in with your eyes wide open - - unfortunately, the battle may just be beginning.

After my recent experiences, I guess I'm a little jaded. :-)


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RE: Those who have experience with special needs children,

paige, you are absolutely right. I wondered what would happen with 2 different diagnoses (not autistic/autism spectrum vs autistic) so I asked my friends. They said that the school is not obligated to accept either report, but that they (my friend's team) were compiling a whole batch of data to underscore the validity of their findings. If the school does not accept the report, then we will file an appeal (if that is the right term) and my friend says that he feels very confident in the outcome. We'll see.

sweeby, my friend emailed me with some info as to why he felt we were looking at Asperger's rather than hyperlexia. He said that there were things that didn't fit in hyperlexia, but honestly, I think there are things that don't fit in Asperger's, either. However, I don't really care what they call it if it means we get the support. That's the part I don't yet know about and I guess I'd better start determining what we can request. I am still not sure what the district/county stance is on Asperger's or if the ADOS score makes a difference.

brachl, I think you're correct about getting the report in words that will give us the best edge regarding services. I know that's what my friend was planning to do so I guess I'll defer to his judgment. I don't think he feels hyperlexia is a good thing to put down on the report.


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RE: Those who have experience with special needs children,

That's the trouble with autism-spectrum issues... There are always things that don't fit! When you get righ tdown to it, I think we are still so far from really understanding autism in all it's various forms, and there will always be pieces that don't fit that someone can pounce on.

I re-read your initial posts to see what you said at first before we all glommed in with our opinions ;-) and you mentioned that the autism play group teacher had some different opinions.

" We have repeatedly asked about it and been told she doesn't need to be tested, though her autism playgroup teacher disagrees. Unfortunately, that teacher has not been willing to put her thoughts into writing for us."

Is she someone you could call back now? Tell her about Alex's meltdowns, about her recent evaluations (Colorado team) and ask what it was she saw that may be significant that indicated to her that further testing was appropriate. She may not want to 'go on record' with views that differ from the school's 'official' stance, but at the same time, if she believes Alex has autism or Aspergers, she will not want to see Alex discharged from SpEd and may be willing to speak up. Also, do you have any notes or progress reports from when Alex was in her playgroup? The school was treating Alex as if she had autism at one point, and if you can point to anything that indicated that Alex had autism back then, then it's pretty simple to say "Do you mean her autism has been cured?"


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RE: Those who have experience with special needs children,

Good advice, sweeby. I actually sent my friend all of our records dating back to preschool (and I kept everything!). In it were notes from the playgroup teacher that we included for her kindergarten teacher in the IEP meeting that year. I had forgotten about that, and it's the only thing in writing we have from her. I have also spoken with her and told her about both MIND and the CO testing. I told her that CO was very complimentary about her methods.

Anyway, here is what she wrote for the IEP in 2005:
-Inconsistent eye contact
-Odd physical mannerisms with toe walking, rocking, hand motions, and facial grimaces
-Strong apprehension meeting and talking to new people and new adults, not just shyness
-Refusal to enter areas where groups of familiar adults are gathered
-Doesn't modulate emotions appropriately
-Odd facial grimacing, odd body movements
-Toe walking
-Specific repetitive movement routines for times of high arousal
-A limited range of play interests
-Preservative and excessive reliance on a a specific play theme
-Once a routine is established, becomes anxious and agitated if routine is changed
-Withdraws excessively and avoids situation when she becomes anxious
-Becomes excessively anxious with unpredictability in the environment
-Poor visual perceptual skills
-Fear and nervousness

As you can see, all of those are pretty typical of kids on the spectrum. I don't see all of those at home, either, so it's good to know that they observed things at school and noted them. Alex has learned, through playgroup, to modify many of those so that they are not apparent to others. She is a master at "masking." According to the team in CO, when in public she is generally "on stage." I think this detachment from her real self is how she copes with everything or I guess maybe it's just that she is more comfortable with a known script than with the possibility of making a mistake with something she comes up with on her own.

There was some sort of political dynamic that made the teacher reluctant to counter the findings of the district psychologist ("nothing wrong"), but I believe that she would do it now. I know the head of the preschool Alex attended, where the playgroup was held, is very willing to speak up on our behalf. There are others from the preschool (OT, speech person, teachers) who would also substantiate our assertions. My friend said that the paperwork I gave him is very telling and certainly indicates autism/autism spectrum.

Now I have to go back and read what I wrote in the beginning! It's funny how it starts to muddle after a while. There were things I was asked about Alex when she was 2-3 that I simply couldn't recall. Did she point to a cookie at 2? I have no idea. This process has REALLY made it clear to me how important it is to test early!!!!!!


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RE: Those who have experience with special needs children,

It's amazing really...

One thing I noticed when I went to organize my documents (a task you must undertake very soon -- more to follow) was how hard I tried NOT to see things early on... Even though in my heart and gut, I suspected something was wrong as early as 6 weeks, part of me was in denial and I lost valuable information. When did he sit up? Crawl? Walk? Speak his first words? Don't really know... I know it was somewhat later than it was 'supposed' to be and waaaaay later than his brother -- to whom I was desparately trying not to compare him. But that would have been very valuable information had I been better about recording it. Hopefully, you'll have done better than I did... If you haven't written things down, try to do that now -- What was she doing at her 1st birthday party? 2nd Christmas? Other memorable occasions? What did her early daycare workers say? Sunday school? Write it all down, because it only gets more vague...

Anyway -- On to organizing!

Grab everything you can find pertaining to Alex and put it into a very large 3-ring binder organized by DATE. (Not by subject -- there's too much crossover.) Write the date in pencil lightly in the lower right corner of every page, and just file things in order. Copies are OK if you need to keep originals elsewhere -- but be sure *everything* gets into the binder. Then when you're done, make a list of what you've got, who prepared it, the key point (in 10 words or less) and the date so you can find it later. This will be your SpEd lifesaver...


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RE: Those who have experience with special needs children,

seeking, Sweeby's advice about the binder is excellent. In my case, it would have required about 6 binders, but even so, I wish I had done it. I found things after my due process hearing was over that would have been helpful to have at the time. We won anyway, but if we had lost I would have been pretty upset with myself for not having used those later-found documents.

I think you should be able to establish, through your new "Dream Team", that Alex has a covered disability. What you still need to develop is how that disability is affecting her detrimentally at school. That's going to be the tricky part, in my estimation, because they will simply say that her grades are good and thus she doesn't need Sped anymore. Make sure your team has an answer for that.

Also, try not to put too much faith in individual teachers and staff members who work for the school system. I really thought that the majority of the staff who worked with my son would tell the truth, or at least mostly the truth, when they got on the stand to testify. I figured they would avoid certain subjects on direct examination, but if we asked them a question on cross about which there were no gray areas, they would answer honestly. I was very surprised when one after the other lied blatantly throughout their testimony. These were people I thought I had a good relationship with. Some had been working with DS for 6 years. It was really devastating to me, in more ways than one. First, how can so many seemingly regular, nice people straight-up lie, under oath, even to "save their jobs"? I didn't get it from a moral/ethical point of view. Second, how could they sit across the table from me, knowing I know the truth, and not feel guilty about lying? The funny thing was, they all lied badly and told different stories, so it was obvious. One of them came up to me and my attorney after her testimony, asked how DS was doing, and said "about what happened in there, I just want you to know, it's just business." Um, no, it's my child, and she was entrusted with his care.

So please be careful. There is apparently a lot of pressure on these people.


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RE: Those who have experience with special needs children,

Great advice, sweeby! Thanks so much for the idea. Unfortunately, like you I basically avoided the truth and did not record milestones etc. I can't accurately remember a lot of the details of her very early years. At least I kept all of the "official" documentation as well as samples of her work from age 3 on. However, it was frustrating to be asked over and over whether Alex echoed me, or used my hands to gesture, or whether there was ever a regression in skills, and on and on, with no clear memory about it. Did she reverse pronouns? Did she babble? When did she first use 2-word sentences? I had to tell them in many cases that I just didn't know. I could usually tell them when she had done something unusual and that if I hadn't noticed anything different, I thought it was probably pretty normal. Having 5 kids, I have a pretty good idea of what things were not typical.

paige, how awful!! It's so sad that people can buckle under job pressure and trash their integrity. I don't see how anyone could do it. I do know, though, that it has happened to us twice in a less direct way. The playgroup teacher was simply unavailable for any documentation or official input, which I considered a breach of her contract but was obviously coming from "above." And the caseworker, who seems like such a lovely, warm person who cares about Alex when you're with her one-on-one, will turn on us in an IEP without batting an eye. DH told me to be very careful with what I say to her (I tend to trust people and will give way too much info). The district has made no secret of the fact that they want Alex off their sped rolls. Thank you for reminding me to be careful!!!

A couple of days ago, I had a chance to speak briefly with Alex's new teacher (2nd grade). Alex was standing right there so I couldn't say too much. The teacher expressed amazement that Alex is on an IEP and said the usual we hear from teachers about how well she does, how smart she is, what a joy to have in class, etc. Then she went on to laugh about how much glue Alex used on her continents project that day. She marked Alex's project in red ink with words about not using so much glue and she called her "Miss Glue Girl" in front of other parents and kids after school. Alex burst into tears in the car and told me that she had had to do the project twice and still couldn't keep from getting glue all over. She said all the kids were watching. That's the kind of information I assumed would have been given to the teacher--Alex has *always* had a lot of difficulty with motor skills! Where are the reports and the people who are supposed to be working on Alex's behalf? I had requested a meeting with the teacher so that I could go over some of this stuff, but we hadn't had a chance to meet yet. Alex is left-handed, clumsy and awkward with any kind of project/art work/writing assignment, but there are easy accomodations for most of it (extra time, understanding that she *has* difficulty, left-handed scissors and perhaps a GLUE STICK????).

The teacher also laughed about how serious Alex is. She told how she and another teacher were joking with her about her dress. They told her it was so pretty that they wanted it. When she just looked at them, one of them said, "What, you won't share your dress?" and Alex just looked at them and didn't laugh but frowned instead. Well, she doesn't understand that that is a joke. That remark would puzzle her because she wouldn't be sure how to take it. Again, that is something that has been noted in her records all along. This is the danger in teachers reporting that there are no problems and everything is fine!!!!

Today she had a VERY hard time going to school because it's Fine Arts day. She absolutely dreads art day. In her arts class (or at least this was true last year), everyone does the same picture and they work on skills such as perspective, graphic sense, symmetry, etc. Alex is not able to do any of those things the "right" way, so her Woman or Dragon or Building looks very different from most of the other kids'. It does no good to tell her that art is what comes from the heart, because for a little girl attuned to following the rules and doing the best job, that is a moot point. Personally, I love her paintings because they are her and have a sort of Picasso-esque quality :) Luckily, we've not gotten to the age yet when these things are graded, but she knows the eyes on her person are not the same nor is the nose in quite the right spot etc so she is very unhappy with her work. Anyway, she has a little chime ball I gave her last year that hangs on a ribbon. I have had it for years. It's a little silver ball and if you shake it, will make a soft chiming noise. It's in a little basket thing so you can wear it as a pendant. I told her last year to imagine there was a little fairy inside and when she felt upset, to shake the ball and the fairy would sing to her. It worked pretty well and she told me that the fairy would sometimes tell her the right answers on her work. Today she put it on for Fine Arts. This year I gave her a small silver heart in a silk pouch for her to carry in her backpack. She gets it out when she is stressed and holds it in her hand to remind her how much Mama loves her and a piece of me is there with her to make her feel better. She made sure she had that today, too.

We've not had as much trouble with meltdowns but she is very anxious and angry before and after school. She will sometimes go under her bed for a while and she likes the cupboard under the stairs. She goes in there with a little light and reads for a long time. I told her she's like Harry Potter, though I didn't mention that Harry didn't go in his cupboard out of choice.


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RE: Those who have experience with special needs children,

You're such a good mom, Seeking! You so totally 'get' Alex, and it's clear that her teachers haven't been given a clue and haven't started assembling one themselves yet. A good one will -- but of course, by then, Alex will have done a lot of needless suffering.

Some SpEd moms I know write up a short "All about Alex" sheet to give to their child's teachers at the beginning of every year. They include stengths and endearing qualities as well as weak areas and things to avoid, and sometimes -- if they get taken seriously -- they can be a real help. Now that John is in 5th grade, I'll need to write one up and make a bunch of copies for all of his teachers...

It would be very helpful for a caring teacher to know that Alex simply doesn't understand jokes, that she's very anxious overall, and that poor fine motor skills combined with anxiety and perfectionism make artwork tortuous for her.


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RE: Those who have experience with special needs children,

I have been following this thread, and my heart just aches for you and Alex.
As an art teacher, I see every child in my school. I also teach 4th grade reading, LA, math, and Social Studies. I very often joke with the students. Your post really hit me hard and will make me more aware of individual differences.
I do get the IEPs for all the students, but at the beginning of a new school year it is impossible to remember ALL the special needs. First, I must learn all the names, then I can zero in on special needs.

I really appreciate parents who come into school ahead of time and discuss specific special needs. Then I am sure to seat their child in the right place, near the correct children- or away from a specific child- and I am sure to be aware of their child from the get-go so we all start out on the right foot.
Putting it in writing, as Sweeby suggested, is an excellent idea.
The IEPs are pages long, and when you read them before you meet the class, they don't have much meaning. Once I know the class, I reread them and have that Ah-Ha! moment.

I once had a student who was deaf in one ear. The parent didn't tell me until Parent-Teacher conferences in Nov! It wasn't written anywhere. Don't assume that last year's teacher will tell this year's teacher. Teachers come and go, assignments change, people forget.

However, as a parent, you want the teacher to know right away if there is an extreme problem that will affect the child's self esteem and attitude toward the teacher and school for the year

I certainly hope you receive the guidance, assistance, and nurturing Alex deserves.
I will be much more aware of individual differences and exceptional students as I start school next week!


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RE: Those who have experience with special needs children,

sweeby, that's a great idea! I am meeting with Alex's teacher in the morning tomorrow, so I will write up a little info sheet for her.

artteacher, thank you for giving a teacher's perspective. I have to admit that going through this as a parent has completely changed my attitude as a teacher. Nevertheless, it is a different story when you're talking about 20 students total compared to the kind of student load you carry. I generally had between 150 and 175 students per day, so it was not possible to know much ahead of time, as you say. If I'd had only one class of 20, I think it would have been much easier. Part of our IEP included choosing her teacher for 2nd grade ahead of time and "cluing her in" on Alex's particular case, which is why I am disappointed to learn that she wasn't really given much information. I did find out from her yesterday that Alex's caseworker had contacted her via email, but told her that Alex was fine at school and only had problems at home. Anyway, I really wanted to tell the teacher, when she was relating the story about Alex's dress, about the reason for Alex's "seriousness," but I prefer to wait until Alex isn't standing next to me. I'm sure the teacher was as puzzled as Alex by the situation!

Here is a funny side note about Alex's art! We just got a package yesterday from my mom. In it was a big satin ribbon, a $10 check, and pictures of Alex's Woman painting hanging at the fair! We had framed the painting and given it to my mom for Christmas, and without telling us she entered it in the fair where it won first place and best of show!! Alex was spinning with delight. Isn't that funny timing??


 o
picture

If you're interested, here is Alex's picture at the fair:


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RE: Those who have experience with special needs children,

I *LOVE* "Woman" by Alex!!!

The colors are vibrant and the facial expression is very interesting. Alex did an amazing job!


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RE: Those who have experience with special needs children,

What a wonderful success for her, especially as she dreads art day. The picture looks so cool in the frame too.


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