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!

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.

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.

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.

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.

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.

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.

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!

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.

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!

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.

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!

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.

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.

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.

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.

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!

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.)

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.

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.

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!

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.

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!

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.

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!

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!

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.

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!

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.

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.

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!

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.

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... ;-)

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.)

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.

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.

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.

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. :-)

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.

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?"

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!!!!!!

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...

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.

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.

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.

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!

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??

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

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

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

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