Special needs children part II

seekingadviceSeptember 6, 2007

I don't have much of an update, but I thought I'd start a new thread since the old one maxed out. Thank you, artteacher, for your sweet words about Alex's picture! It's my favorite. She told me that the "scarf" around Woman's neck started out as her legs, *snicker*. She realized that wasn't quite right and I think her art teacher helped her figure out a way to get around that.

I am supposed to be receiving the report this week. It didn't come today so hopefully tomorrow (Fri). I spoke with my friend on the phone and he says they feel Alex has Asperger's but that hyperlexia is a component.

Alex has been doing better as far as not having big meltdowns, but I've noticed a new trend. Whenever she is particularly upset or anxious, she feels it physically as an illness/pain. "I have a bad headache," "My stomach doesn't feel well," "My ear hurts," "I itch all over!" and things like that. Yesterday, on our way home in the car after school, she suddenly began half-screaming, half-crying that she itched all over. When we got home I put her in the tub and she calmed down, but she did have a rash on her stomach, back, arms and neck. Maybe it was the grass at school, maybe a reaction to something else, but could it be a physical manifestation of an emotional ordeal? Is that possible? It quickly faded after that.

She is still very angry at times, mostly before and after school. She lashes out at the family and uses all of the "bad" words she knows--at this point: Stupid, Butt-head, Idiot, Jerk, and her latest acquisition thanks to me, Anus (she had asked me how I liked the name Ayna for her new stuffed animal and I told her I thought it sounded a little too close to anus, the meaning of which I then explained). Didn't take too long for Anus to make it into her repertoire :) I dread the day when she is clued in on the Big Dog words. I guess one advantage to naivete is that I'm sure she has heard those words but they simply haven't registered with her.

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With my DSGS, he developed mysterious illnesses whenever he didn't want to do or eat anything (read anything other than cartoons or video games. Several years earlier, his one year older brother (EXTREMELY abusive to DSGS)had been run over by a car and had lots of surgeries and recoveries. His other grandma who had custody of both boys spoiled him outrageously and still to this day uses leg pains as an excuse. (Right now at age 14 he is in a residential treatment facility for sex offenders. He's been locked up since he was 9).

Anyway, DSGS used to try to pull the leg pain thing at school and at home if he didn't get his way. But guess what, it didn't work at either place. At first, he angrily demanded some medicine and pitched a big fit. We gave him a chewable vitamin, and voila! Not 2 seconds later he was "cured". Man, I'm glad those days are long gone. I think it is the separation from his abusive brother that has been a big part of his growing up.

He also used to play the "I'm too stupid and retarded to breathe let alone hear you and do what you ask" (read anything other than cartoons or video games!)We soon learned that if you act up at home or school no cartoons or video games. He kept testing and testing, and soon they were given only on weekends, and ONLY if he'd had good days at home and school. He still tries the "I'm too stupid" thing once in a while, but not as frequently or as stubbornly.

These kids can be challenges. Sigh.

    Bookmark   September 7, 2007 at 3:43PM
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Seeking - My sons' (4 and 7) favorite word right now is "Butt." Along with all the hilarious things that butts do. It gets pretty rip roarin' around my house -lol.
I feel for you!

My 7 year old just started back to school and has been coming home complaining of leg aches. I think it may have something to do with staying seated in one position longer than he usually does at home.

When he was in first grade, he would sometimes complain of headaches and tummy aches. I think it was a combination of nerves and simply focusing his eyes on school work.

Alex's rash sounds like it might be allergy related. It could be the grass or maybe some new food she tried at school. Some common viruses can even cause this type of rash. And I think it could also have an emotional basis. I've known more than a couple of kids who have had these types of rashes. Sometimes you never know for sure what caused them.

Good luck!

    Bookmark   September 7, 2007 at 9:36PM
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Seeking, I just wanted to give you a virtual hug. I know it's not any help at all, but after having two bad weeks with DS (he's not eating again and he's losing weight rapidly) I can say I might feel a little bit of your pain. Special needs, means special mom's (or special parents) and sometimes it's hard to feel special when they exhaust you! Best of luck working through things!!! And, as the teletubbies would say..."Big Hugs" :) (We're not quite past teletubbie stage yet)

    Bookmark   September 8, 2007 at 5:19PM
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OMG, igloo, I'm so sorry!!! Big Hugs right back at ya. I sometimes wish we could just become complacent and have things continue on an even keel, but that doesn't seem to be an option, eh? Good luck with your DS, and update us, ok?

busymom, my oldest dd used to complain about leg aches at about the same age. The pediatrician referred to it as "growing pains," which I had never realized meant real pain! Fast growth and activity, I guess, can create aches and pains. I still need to look into the allergy thing. I have been meaning to do that for months and I've not gotten to it.

dirt yfingernails, wow! I don't even know what to say. How awful for you and your family to have such a situation with your DGSs, and how very sad for those boys. While Alex isn't above trying to get out of doing something she doesn't want to do, she wouldn't use pain as one of those strategies. I mean, she is really feeling pain of some sort, but my guess is it's more an internal thing that is coming out as a physical hurt. I hope that things work out for your DGSs and your family!

    Bookmark   September 10, 2007 at 4:11PM
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So sorry for Alex. Real pain hurts us as much as our kids. Hugs and best wishes. Same to igloo and busymom.

    Bookmark   September 11, 2007 at 9:56AM
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We had an epiphany with John the other day, and I thought I'd post it here in case it helps any of our other special kids. As you all already know, life can be especially frustrating for our little ones, and we came up with a way to help John manage his emotions.

What we do is visualize his anger and frustration as a big red balloon, the angrier he is, the bigger the balloon and the closer it is to popping. Then we breathe deeply and as we exhale, imagine air leaving the balloon, and the balloon getting smaller and smaller. It's an easy-to-use strategy with a great visual analogy that has worked very well so far.

And one of the best things about it is that it places the responsibility for managing his emotions back onto John. He is the only one who can 'manage his own balloon' and keep it from popping, and we can talk about whether he is adding air (getting himself worked up) or letting it out.

    Bookmark   September 11, 2007 at 10:33AM
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sweeby, what a FABULOUS idea!!! You are so clever!!! I just love the balloon idea. I hope you don't mind if I borrow it? We've had pretty good luck with imagery like that. I love, as you said, that it puts the responsibility on the child. At the same time, it gives them POWER! Brilliant.

dirt yfingernails, do you have custody of your DGS? How old is he now? It sounds as if you used some really sensible methods with him. I hope he appreciates you!! It must be hard to deal with a situation like that without letting pity get in the way. It's one thing to be stern with a petulant child, and something else again when that child has been abused/has serious issues.

    Bookmark   September 11, 2007 at 10:41PM
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Yes, we have custody by agreement with his other grandmother. She was about to lose custody to the state, so she rushed him to us with 8 hours notice - she lives 8 hours away. Actually, we had greatly anticipated our empty nest when my DS is through with college. Oh, well.

Need to vent a little. His first week in school went fantastically. Yesterday, his perplexed teacher noted that he refused to read. When urged to comply, the thirteen year old brat started crying. He is testing her. I noted in the notebook that he is not above crying, meltdowns, phantom leg pains, refusal, etc. when he is urged to do something that is not his idea. Last night his electronic game was removed. No good behavior at school, no privileges at home. And he is not supposed to eat in the living room, but this morning I found a pop tart wrapper under the couch. There will be a consequence to that. Perhaps no food until I get home from work - that's only an hour, he probably won't starve.

    Bookmark   September 12, 2007 at 10:21AM
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I'm no expert, but is it possible to take him to see a counselor while he is adjusting to all of the changes? I know it's hard, but teenagers will test our patience! It sure sounds like your DGS needs someone (outside party) to whom he can vent. He must have a lot of anger, frustration, fear, etc built up with a background like his. He is certainly crying out for attention, and it sounds like he is getting it all in a negative way at this point. Perhaps with the help of a counselor you can come up with a way for DGS to get more positive feedback.

At the risk of sounding critical, I would like to gently suggest that being overly strict right now may have the opposite effect from what you'd like. All of the things you mention--crying, meltdowns, phantom leg pains, refusal to do things at school--indicate a kid who seriously needs something besides more punishment. He may not be able to reciprocate love and affection yet (don't know), but that is most likely what he needs most of all from you. Not only has he been abandoned, shunted around, and abused, but he is 13. I think that if you could see him as a kid who is trying desperately to cope rather than a brat trying to get out of doing things, it might help a bit. I don't know.

    Bookmark   September 12, 2007 at 12:06PM
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DGS regularly sees a counselor at school as part of his IEP. He has changed dramatically from four years ago, but is still as you say, an abandoned kid and a teenager on top of it. I realize he can't have all good days, but it is frustrating to see him struggle. I just want the best for him.

    Bookmark   September 13, 2007 at 9:50AM
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we do not remove privileges out of a desire to punish, but to redirect his behavior and let him see the consequences of his actions and to take responsibility for them. And it is as difficult on us as on him.

    Bookmark   September 14, 2007 at 10:21AM
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Sometimes I have to put my issues with DS into perspective and while ya'll aren't attempting to do that for me, this thread does help. He's difficult because he's hungry (though he does not know it) and sometimes I just want to cry for a few hours with him, but he's not a teenager :) And that in it's own right is something to be thankful for!

Dirty (funny name) :oP Darling I have to commend you for taking on your dear GS :) When we were considering early retirement and came up pregnant...it was shocking. Our neighbors were considering the same (not early retirement...they're a bit older than us) but they were given a similar suprise to yours in that they were offered the chance to adopt their great grandchild. If they didn't do it she would leave the family for good. They had about six hours to discuss it ;( You know the feeling and just like them, I think you're a great example of what a wonderful parent can be. You're giving that lovely boy a home :) and while it's hard, it's such a great thing you've done. Trials and tribulations will ensue :) But when he has a child, hopefully he'll take some of the great lesson's in love you've taught him into his heart to share with his children.

Ya'll are great mom's. And when I'm whining about a whining baby, remind me that the light at the end of my tunnel is in just a couple of years. Our issues won't continue throughout his life (at least the eating side) and for that we're blessed.

    Bookmark   September 14, 2007 at 8:01PM
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Interesting that so many special needs kids have the leg pains. My DS has Aspergers, he has had leg pains, often waking up in the night with them. We usually just rub them with a good moisturizing cream. I think the massaging helps and he feels like I am taking care of him.
But I have another issue I'd like your opinions on- DS is in 1st grade. He is being "mainstreamed" this year and he is adjusting slowly but I am braced and ready for the many melt downs to come while he feels his way through more change. But he is beginning to understand that he is different. And he is different in a lot of ways. He is adopted, he has curly hair (the rest of the family has straight hair but I do mine in spiral curls from time to time to the horror of my teen but to delight my little one), his skin is light brown(he is black, Asian, Mediterranean and Hispanic- but other family members are white) and he has meltdowns and problems socializing while other first graders have lots of friends. Anyway, I see I'm rambling. His teacher has assigned the kids to do timelines of their lives. I think that for DS this is just going to make him feel more different. There won't be a birth picture or any baby pictures. Obviously we will try to do this in a very positive way but there are milestones that just won't be there unless I make them up. I'm torn about this project. I don't want him to feel different because he is adopted. He knows he was born to another mother but I don't think he really understands adoption yet or what it means. He is academically smart but has the emotional makeup of someone much younger. Am I just being too sensitive? We will probably just make a simple time line with pictures of vacations and the like. His real time isn't rated for 1st grade-hospitalized, taken in to protective custody, went into foster care...

    Bookmark   September 17, 2007 at 1:55PM
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Oh Nan - I'm so sorry your little sweetheart had such a rough start in life. And you're right about this project being especially challenging.

I think you're on the right track about doing this in a positive way -- Maybe he could draw a picture of himself as a baby? Is there any way to illustrate how you picked HIM out of all of the babies because of how special and wonderful he is? How you knew he would be just perfect in his own special way?

One thing I always emphasized with my kids is that WE ARE ALL different. That everybody is different, and that people who point to one person or another as being different just don't get it. Somehow, that seems to have really stuck with my two. In fact, with my younger child (autism spectrum), it may have stuck a bit too well, since he still doesn't seem to understand that he is any 'more different' from anybody else. Don't know if that's good or not...

    Bookmark   September 17, 2007 at 5:18PM
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Sweeby, thanks for your kind words. It is so great that your kids are aware that we are all different. So far the school year is off to such a rocky start, I think the timeline will be the least of my problems!

    Bookmark   September 20, 2007 at 1:19PM
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seekingadvice - I think you know I have a 23 year old son with Aspergers/High-functioning Autism. He also says things about not feeling well or having a stomach ache or headache or being tired.

I don't think he has these things wrong all the times he says he does. I think it is their way of communicating about not feeling like themselves at times and don't know how to put it any other way. And it is usually when he feels under pressure. He also has OCD, so it manifests itself that way. He is kind of a hypochondriac. (DH's whole side of the family is that way.) Has your DD been tested for OCD?

I never tolerated name calling and was strict about that, with him losing privledges and nipped it in the bud. His teachers were also strict too in regards to that so we worked on him together. He's the type that once you changed a behavior it's permanate. When busy doing something, he can stll lash out and raise his voice when replying to a question but catches himself and apologizes. You can never give up and have to just keep working with them. It is for them that we do all this.

Good luck.

    Bookmark   September 20, 2007 at 7:33PM
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I sometimes "stop by" this forum with a cup of coffee and an open mind. I spent the first 20 years of my teaching career doing Special Ed, and the last 13 doing General Ed. I still get all the "tough" kids placed in my class because I view all children as needing to be treated as individuals. So I tend to have a lot of success. I just want to encourage all of you regarding the School Side of Things.
First. You have every right to respectfully demand that your child be placed with a teacher whose style matches your child's learning style. Or is flexible enough to realize that in these situations it is the adult who needs to adapt. Make sure you stress that it isn't about being a "good or bad" teacher, it is only about matching styles.
Next. Just as you get to a point where you just don't have the energy to follow-through, do the right thing, or be patient, your child's teacher will also have those moments. Give them grace, and expect the same in return. Open conversation and sharing your common frustrations in an honest way will help everyone involved. One of the common tendencies of teachers is to feel that there is a lawyer laying in wait to pounce on them if they speak an honest truth about a child. I am very direct with my kids and their parents, but it is very much a tough love, believe- we- all -deserve -to- thrive sort of outlook. It is rare that my parents don't respond in kind.
Also. All kids deserve the opportunity to celebrate their strengths on a daily basis. Over the years I have had a few kids in my class where the only positive thing I could think of to put on an IEP was "has a nice smile" or "always has excellent hygiene". Even so, that was rare and mostly with kids who passive-aggressive tendencies caused them to do things like steal from me, or destroy items special to me like my daughter's wedding picture. Yet, even in those moments, I made sure that my focus was on the BEHAVIOR, not the soul of the child.
Finally. Every child is a blessing, and the challenging ones even more so. You never take a happy moment, mastery of a skill, or chortling laughter for granted. Raising our children to be successful adults is the goal of every parent. Defining success as the state of feeling worthwhile, pursuing outlets for our strengths, and being surrounded by people who truly love us should be the goal for all of us.
My prayers are with every one of you who faces such difficult challenges every moment of every day. May you find one moment of joy each day as you remember that the hand of God is always present, even when we are too ground down to recognize or feel it.

    Bookmark   September 29, 2007 at 9:32PM
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Well said, momskitchen, well said!!

    Bookmark   September 30, 2007 at 12:10AM
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That was beautiful Momskitchen. I hope my son's teachers feel the way you do.

"One of the common tendencies of teachers is to feel that there is a lawyer laying in wait to pounce on them if they speak an honest truth about a child."

This is so true! I remember when my little one was two and in 'regular' preschool. I just knew in my gut that there was something wrong and I couldn't convince his doctor to order a speech evaluation, or even take my concerns seriously. I asked his preschool teachers several times how he was doing and if they had any concerns about him and his development relative to the other kids, and all they ever said was how sweet he was and that he was doing "fine." Finally, I got rather stern with them, and said "Look - I know you love my son and think he's sweet and wonderful and all. But I think there's something wrong, and I need your help to be able to give meaningful information to his doctor. The best way to help me is by telling me the absolute truth. Please don't worry about hurting my feelings!" And then the stories started to flow... He was slow, clumsy, didn't participate, developmentally way behind... THAT information was what persuaded his doctor to approve the speech evaluation, and start getting him the help he so badly needed.
(And the results of those evaluations caused me to change pediatricians!)

    Bookmark   September 30, 2007 at 8:37PM
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Sorry to have pulled a disappearing act!! I have been having another nasty round with kidney stones - UGH.

dirt yfingernails, I am sorry if my tone came across as offensive/preachy. Of course you are trying hard to assist your DGS in the best way possible, and only you know the issues at hand and what will be the most likely path for ensuring success in the long term. I have nothing but admiration for those who take on the difficult task of nurturing a special needs child, especially one that is not their own.

nan53, that is such a tough call. How do you help DS "belong" while also acknowledging that he is different? Like sweeby, I do think it is very important with these kids (and, perhaps, all kids) to look for ways in which they are like others but also look at the ways in which they are different (and not try to pretend those things aren't there). That way you can let them know that you LOVE those differences because that's what makes them special. Well, that's so basic I'm sure everyone else does that, too, but I think it's especially important when they're faced with a situation like your DS's school project. I would love to hear how that went and what you came up with. I loved the idea of having your DS draw or cut out pictures of how he imagined he might have looked as a baby or toddler and maybe a picture of Mommy and Daddy taking him home or something. You absolutely are not being too sensitive!!! With the background you mention, it simply isn't easy to develop a timeline with fun milestones and it doesn't seem right to make them up, either. I think I would probably have a period, somewhat underplayed, that was labeled something like "Waiting for Mommy and Daddy" and play up the points after that.

It is interesting about the pains that these kids often talk about. Alex has moved away from that to some extent, although last night she told me (when doing difficult school work) that her throat and stomach hurt and her voice was almost gone. Didn't take a brain surgeon to figure out it was time to move on from that!! Amazingly, her voice came back rather quickly after we abandoned math practice. She was the one who wanted to do it, btw. She is beyond where the rest of the class is in math now so her teacher has been giving her multiplication tests while the rest of the class takes their addition/subtraction ones. She is up to the 5s. I don't think I knew any multiplication in 2nd grade.

aptosca, I think you're right on the money about using the physical ailments as a way to verbalize that they are not feeling ok. It's actually pretty clever, isn't it? Thanks so much for your anecdotes regarding your son. One of the recommendations that was highly stressed for Alex is that she get help immediately to mitigate her OCD tendencies. The psychologist said that as things get progressively more difficult for her academically and socially, she is likely to fall back on her self-stimming and soothing mechanisms and her borderline OCD could easily turn into full-blown OCD.

I was interested in what you said here: I never tolerated name calling and was strict about that, with him losing privledges and nipped it in the bud. I have tried this in vain. Alex, when she is at the point of name calling, is beyond the ability to act rationally or respond to behavior mod. One of her main methods of lashing out at that time is to call me the worst names she knows, which now includes the word B(#ch. It horrifies the rational girl, but she cannot seem to control it in meltdown mode. I have concluded that the only thing I can really do about it is to try very hard to get us to where we can keep from reaching that "point of no return," but I can't always see it coming. We're MUCH improved, at least. How did you do it?

momskitchen, you wrote a beautiful post and I appreciate so much hearing a teacher's perspective. I have to admit that I was not nearly as good a teacher before I had Alex because I was both ignorant to some extent and dismissive. I am ashamed to admit it, but I often felt that too often, these syndromes were simply important-sounding labels to placate parents who weren't doing a good job. Boy, have I learned a thing or two and eaten some humble pie :) On the other hand, I think that too much is dumped on the regular ed teachers and that as a parent, it is easy to forget that the teacher is dealing with any number of students with various difficulties. However, I do have some issues with schools and school districts. The best interests of the child are rarely at the forefront of their policies or recommendations. I have found that a good, understanding teacher is the most important key for Alex.

I LOVE this line: Defining success as the state of feeling worthwhile, pursuing outlets for our strengths, and being surrounded by people who truly love us should be the goal for all of us.

    Bookmark   October 4, 2007 at 4:29PM
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I was in no way offended by your reply. Perhaps I was a bit over-sensitive since I made a post on another forum that has two well-known trolls that jumped down my throat numerous times and called me everything but a good parent. These kids don't come with manuals and we must work with them on a play-by-play basis and muddle through doing our best. This isn't the most active forum, but I have had a lot of support and wisdom from all viewpoints and apppreciate each one of you.

DSGS has been pretty good the last week. He lost his Wii over refusal to work at school one day. I gave it back Tuesday night since DH was in the hospital for urgent but minor surgery. DH had a very large abscess below the waist. It was pea-sized when he discovered it Saturday. Monday morning he called in and couldn't get into "Urgent Care" until 10:30 Tuesday. It was then the size of a chicken egg or larger. Doc thought it would resolve on its own with antibiotics, but set up an appointment for 4:00 with a urologist. He didn't get in until 5:00, and the uro said surgery, NOW! I had to go home after work to look after DSGS, so he drove himself to the hospital. By that time the abcess had ruptured through the skin and he was in mucho pain. Finally had surgery about 9:30.

Monday, he had to attend as a panel member for a forum on the upcoming operating levy referendum for our school, and a neighboring larger city that is also going for a levy. (one-third of the state's schools are this fall) He was in a lot of pain, but got heavy applause for one of his responses and the city's article in the paper focused mainly on DH. He's been a member of the school board for 10 years, serving twice as board chair, including two years ago as board chair during our state's second-longest teacher's strike. Finances are always critical in education. Funds are down due to declining enrollment, charter schools, and open enrollment. Add to that declining state and federal funds and unfunded mandates and you've got a nightmare. His earnings are just $150 a month and he works more hours than his regular job. He doesn't ask for mileage or long distance reimbursment. A lot of dedication plus he does a lot of research on every issue. He was proud to be able to hand my daughter and son their diplomas. He is getting kind of tired, especially of union negotiations, but he is thinking of running one more time so he can hand DGS his diploma in six years. Needless to say, I am proud of his diligence, intelligence, and cool head.

Enough of that. Went home Monday morning, doctor okayed him to drive his truck home. I had to go get his prescriptions filled so couldn't follow him directly for the 30 mile drive. I was pretty nervous until I got home and saw he made it okay. He's still moving gingerly, but plans to go to work today. Thank goodness his job as a radio announcer isn't physically demanding. He's got a lot or work to catch up on with ad production since he's been out all week. Bet he's pretty tired and sore when he gets home. He has a lot of catching up to do relating to school, too.
That's my excitement of the week.

    Bookmark   October 5, 2007 at 11:26AM
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Wow!! Your poor dh!!! How horrendous. I do hope he continues to improve--sounds like he is one busy and dedicated man.

But it looks like I may have said another offensive thing regarding schools. I do appreciate the hard work of those who help keep things running, and I do get tired of the endless head-butting between unions and administration. But it has been my experience as parent, community member, and teacher that in spite of outstanding individuals within the system, the system itself is not about providing the most for kids but about cutting expenses. While trimming the budget is frequently an unfortunate necessity, it is too often the ONLY thing that is considered at the upper levels when a request is made for services. They will often do what they can to get parents to back off, give up, or take the minimum. Most of my family works in the school system and this isn't anything new. My dad was a teacher, administrator, consultant, and now in retirement has been head of the school board in his town for many years. My sister, dh and I are all teachers. It was always good to get Dad's perspective as an administrator and board member and share our views with him! Sometimes neither side really has much insight into the other.

As a teacher I was often pressured by the powers that be to avoid sticky situations, giving too much info to parents, or even doing much "extra" as there was concern in that case of legal issues. Sadly, that isn't an overreaction, but is usually a risk that good teachers will take. The bottom line was always money. Last year I was given as client a girl in home/hospital schooling who was schizophrenic and catatonic. I am not trained as anything but a regular ed teacher, yet they assigned me to a 17-year-old, severely trouble, potentially suicidal, and over-medicated girl whose family spoke no English. I called everyone, met with all I could think of to try and get her services that could help her, and was basically told that the district was meeting their duty by sending me twice a week to "work with" this girl so she could earn credits. How do you earn credits when 98% of the time you don't move or speak or respond? I finally told them I wouldn't go anymore. I'd been told by her counselors (not school-related) that she wasn't capable at that point of earning credits (figured that out myself, duh!) and that I was in a potentially dangerous position because she had been known to run away, try to hurt herself, etc and I would be liable if it happened while I was alone with her (which I nearly always was, including giving her a ride to the office in my car!). You know what the district did? They graduated her! Did you catch that? GRADUATED her. Turned 18, had a diploma, no longer the district's problem.

On a side note...you may have read or seen things on the news about a school shooting in CA last week. That's where dh and I work (well, I'm not working this year). DH's class is a few feet away from where the gunman held the hostages and fired into the air. DH and his students heard the gunshots and had to stay on the floor for an hour and a half, and then they were able to escape out the window. There was a picture on the internet news of dh handing kids out the window to 2 of his students helping outside, except you can't make out anything of dh!

    Bookmark   October 5, 2007 at 2:57PM
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Seeking - I haven't seen the news reports about your school but my heart and prayers go out to all of you.

    Bookmark   October 7, 2007 at 12:47AM
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Hi Seeking,
I haven't been around much and I only have a few moments, but this caught my eye:
"One of the recommendations that was highly stressed for Alex is that she get help immediately to mitigate her OCD tendencies. The psychologist said that as things get progressively more difficult for her academically and socially, she is likely to fall back on her self-stimming and soothing mechanisms and her borderline OCD could easily turn into full-blown OCD."

This is so true. My son was just diagnosed with OCD. Apparently he had symptoms of it early on, but it was masked by the bipolar and learning disabilities, etc. It definitely is something that feeds on itself and can get much worse if not treated. Unfortunately, the medical treatment is out for DS - - he cannot take antidepressants as they induce a manic response in him. We started cognitive behavioral therapy over the summer, but he refuses to participate, and if he won't do it it won't work. At 12, I think he's too sensitive about sharing his feelings with a stranger and about being a kid in therapy. I highly recommend getting Alex into cognitive behavioral therapy (CBT) now, while she's young enough to not have a complex about it. I feel like this issue is now mushrooming out of control for us and we have no recourse - - hopefully you can avoid that. CBT has been shown to be the most effective treatment for anxiety and OCD, but you have to find someone who specializes in it, not just someone who includes parts of it in their therapy.

I only hope that our experiences will help you get better care for Alex! Good luck, and I'm very glad to hear your husband is ok after that harrowing ordeal.

    Bookmark   October 8, 2007 at 9:04AM
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Seeking, how very scary for you and your husband. What a hero saving his students, not that he'd have it any other way. I applaud teachers, they saved my son. I've posted about him elsewhere, but pre-school special ed for three years helped make him the wonderful young man he is today. We have some of the greatest instructors, as I'm sure every district does.

The strike was a bitter and ugly time, made worse by a handful of union members. Turned most of the community against ALL the teachers, unfortunately. My son, as stepson of the board chair, suffered as did the kids of other pro-district position. He, a senior, went from an A in a required English class to an F. And he stopped out on the picket lines every day to shake the teacher's hands, bring them coffee, etc. because he liked and respected them. My daughter went from 7 years of first-chair flute to 6th chair. Things like that. So a handful of bad apples spoiled the community's perception our teachers in general. Again, most of our teachers are the best most-dedicated and I am so grateful to them.

Paige, best wishes for you and your DS.

DSGS had one episode yesterday. Sounded minor, talking in science class. This special ed teacher is not as communicative as last year's, but I'm sure if it was a big problem she'd let us know.

Poor DH. He went back to work Friday and promptly lost his drainage tube. Doctor finally called him back and said to have the stitches removed. DH asked if I'd do it that night at home. I've never removed stitches, let alone on my husband. I was petrified so DH said he'd go into the doctor. Couldn't get in before his Wednesday follow-up appointment. Last night he had me look at it, and the whole incision has opened. It is red and sore looking, but no infection. He's going to try to get in today, but no guarantees.

    Bookmark   October 9, 2007 at 12:47PM
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OMG, dirt, what an awful thing your husband is going through!! I hope he can get in very soon to see the doctor!! I can't believe they aren't taking this more seriously.

Talking in science class? That does sound minor. I hope it is just a kid thing. Sometimes it becomes hard to discriminate between "normal" and "red flag," at least for me.

Paige, thank you for mentioning CBT. I will look into that and see if there is anyone in our area with expertise in it. That's our main problem--we're in a kind of dead zone when it comes to professionals schooled in the latest. And I totally see how a 12-year-old would present a challenge when it comes to therapy compared to a 7-year-old. I know I wouldn't have dealt with it well, either.

We have our IEP on the 24th. I had a meeting with Alex's caseworker (I'd given her a copy of the report from our Colorado testing) and she was very positive and enthusiastic. She was pointing out parts of the report's recommendations and telling me how she thought we could implement them. I was cautiously pleased. She asked me to come back in 2 days so I could help her design the goals for the IEP. Well, when I went back, there was a definite change in tenor. It seems she had spoken with the school psychologist in the interim and most of the ideas were shot down by that person. I never could stand her; she's the one who was most outspoken about getting Alex out of special ed. The caseworker told me that according to the psychologist, (a) she has no time for Alex, as she is only at the school 1 day/week and is too busy; (b) a resource specialist is out of the question because they don't deal with social/emotional issues, only academic ones; (c) we can't mandate specific programs the school offers into the IEP (we were hoping to get Alex back into a "special friend" program called PIP and a new friendship group that starts in January); and (d) the issues we have need to be handled through private therapy provided by us.

Now, I want to stress that we're not asking for a lot. She is in a regular ed classroom with no aide required. We want Alex to have access to someone special on those rare occasions when something goes wrong and she shuts down. We want her to have a trained person to talk with once or twice a week for 20 minutes or so who can help her with reciprocation, teasing, joking, and other important social cues. We want her to have some type of interactive group of kids to work with, which can be done in any number of ways (club, lunch group, other kids with similar issues, big buddy for kindergarten, etc). Most of these things are already offered in some form at the school, but the psychologist seems to be telling us that Alex can't get anything extra and may not be able to be included in what they do offer.

The psychologist also left me a phone message requesting a copy of the report from MIND. I asked the case manager about this and she said that they just needed to see what the Colorado report is referencing. We already discussed it in detail at her end of year IEP (didn't have a written copy of it yet). I am afraid that the psychologist will use it as a means of denying Alex further assistance through special ed since their evaluator concluded that Alex is not autistic. The CO report outlines very specifically what the flaws were in the MIND report and why their ADOS test results were inaccurate. Still, I can't think it would benefit us to have that report, with which I heartily disagree, in the hands of people who would love to get her off the SpEd rolls. What I don't know is whether or not I'm obligated to give it to them. The school did not pay for it--it was done through Far Northern REgional Center. I know the school does not have to accept either report, but I felt very hopeful after spending so much time with the case manager and hearing her glowing views about the CO report that we would be able to maintain Alex on an IEP. Now I'm concerned that the psychologist is going to try and rebut it. The biggest sticking point is the fact that according to the psychologist, Alex has no academic issues. While this appears to be the case--she is top of her class--it is actually a sign of her particular syndrome: perfectionism, obsession with following rules and being the best, and phenomenal memory being some of the manifestations for her. It is also very evident in the huge amount of stress, anxiety, and frustration she has. We know that once learning goes beyond these early years of memorization, she may indeed have serious academic issue (I really don't know. I suspect she'll do ok but her test scores on both reports say otherwise). The biggest thing is reducing her stress and anxiety. The recommendations for that include desensitization, small group interaction with other kids, teaching her to deal with mistakes and less than perfect work, etc. To me, you simply can't separate the social/emotional from the academic. It's ridiculous to even suggest it.

Anyway, I'm torn between wanting to go in with minimal demands (not rock the boat) so we can keep on an IEP, after which we can THEN alter it if need be, and going in with guns blazing (like with an advocate). Any ideas about that?

And finally, I'm feeling enormous amounts of guilt because I am asking for anything. Sometimes this little voice in my mind says things like this: Alex is so much better off than most kids--she's beautiful, smart, and does pretty well socially--so what right do we have to services? Maybe we *should* let them drop her from Special Ed?

    Bookmark   October 9, 2007 at 3:43PM
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Just had to tell you something funny. Alex has suddenly been gripped by Harry Potter mania. She ADORES the book (she's only on the first one) and has seen the first 3 movies (over and over for the past 2 weeks). Last night she came out of her room with her little sister (age 4), both sporting lightning bolt scars on their foreheads. Other little sis (also age 4) has been singing "Something Wicked This Way Comes" from the third movie for 3 days now. This morning they were using the banisters as Quidditch brooms, Alex giving a pretty good commentary of the plays :)

    Bookmark   October 9, 2007 at 3:48PM
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Seeking, though I have nothing to do with special ed, I have to say that I would be livid if I were you. I believe I would go over the psychologist's head, especially if you had problems with her last year. By making you feel guilty, she's achieving what she wants, that is to keep Alex out of any programs and one more child off her crowded list of kids who need services. Don't settle! Do you happen to know if any other parents have been treated this way by her? I know it's easy for me to tell you that without knowing how hard it is to fight these people, but honestly, I can't believe they aren't legally obligated to offer Alex something in the way of a program. Can you request a meeting with her boss? I probably shouldn't say more as I don't know the technicalities, but all of a sudden she's making you second guess yourself, when at the end of the summer and the testing by your friend you were sure Alex would benefit by some special ed program. No, I would not offer the MIND report unless you are legally forced; if that happens, surly you can also include the latest round of testing that sounded more accurate.

Paige--Do you live anywhere near Oakland/Berkeley, Ca by chance? I have read good things about the San Francisco Bay Area Center for Cognitive Therapy in a book written by a very successful San Francisco radio reporter (Jeff Bell,)who credits one doctor there with his huge improvement. I hope I have the name of the place correct! If you don't live nearby, maybe you can contact them for help. Don't give up, something/ someone will help your dear son!

fingernails-- the bossiness in me won't let me finish without saying that your dh should be seen immediately if the incision has opened up and it is red and sore! If nothing else, take him to the er. How disgusting that you were told to wait.

    Bookmark   October 9, 2007 at 5:07PM
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No time now -- I'll be back. But just some quickies -

- The caseworker was nice and open-minded before the administration put the fear of budget and service wrath into her. Rest assured she's been "corrected" and won't be so encouraging again.

- You DO NOT have to provide a copy of the MIND report to the school (it's yours, confidential medical information, etc.) and your instincts not to provide it are right on target. They WILL use it to discredit any findings they don't like (like autism) and to show that somehow, all of Alex's needs are "medical, not educational" (another crock). Just keep repeating "confidential medical information" until they stop asking.

- If your tendency is to be too nice, my inclination is to bring in the big guns. The school has already shown their bias, and with an academically high-achieving child, they will be able to rationalize a lot of possible services away. You'll need someone who knows the laws inside and out and isn't afraid to step on toes. If you bring in a 'bad cop,' then you can still be the nice one down the line.

    Bookmark   October 9, 2007 at 7:20PM
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I agree with Sweeby - - I think it's time to get a lawyer. If you do, I strongly advise you to only hire someone who specializes in this field. Ideally, it should be the only field they practice in. As an attorney myself, and a litigator, I can tell you that this field of law is so specialized I could do little to help myself. You can find names by going to your state's website of special ed hearing decisions, if there is one. Read the decisions and choose among the attorneys who are used by parents frequently.

As for the MIND report, your attorney might advise you to produce it so that it doesn't appear you are hiding something. I'm not sure. But that should be a decision your attorney helps you make.

    Bookmark   October 10, 2007 at 7:21AM
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Thanks for the feedback.

I guess I got a lesson in why we are fighting for services. Yesterday, when I picked the girls up from school, I gave them a treat I'd gotten--I'd stopped at See's Candy to get dh his favorites for his birthday, and I picked up a chocolate buttercream for each girl. Once they were all buckled into the car, I got out the candy bag thinking they'd be so excited, but Alex took one look and started screaming! She'd had a piece of peanut butter fudge while visiting Grandma several months ago and it happened that shortly afterward, she threw up several times (unrelated to the fudge). To her, the 2 things are intertwined and the chocolate buttercream reminded her of the fudge that "made her sick." She screamed and ranted all the way home--15 long minutes. 15 minutes seems like forever with a screaming, raging 7-year-old. It's not a tantrum. We've been having these rages for 3 weeks or so now after a pretty good start to the school year. It's now spilling over into my 4-year-olds, who are imitating the behavior and I am having trouble explaining to them why Alex "gets away with it" and they are not allowed to do the same.

Alex just looks so confused and miserable every day. I will talk to her teacher again and see if she has seen any signs of this.

At the school carnival last week, Alex's teacher from last year smilingly told dh she'd heard how well Alex was doing in school, and dh was cautious and noncommital. It's sad that we're now suspicious of people's motives in praising our daughter.

    Bookmark   October 10, 2007 at 3:05PM
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It is very sad, but be very suspicious. Our hearing officer actually made a finding of fact that members of our IEP were conspiring with each other to avoid giving services. And I wouldn't even ask the teacher for an update, frankly. Believe me, if she has a tantrum like that at school, they'll tell you. Telling her about what is going on at home will just give them more opportunity to tell you it isn't a school issue.

I would, however, consider asking them to tape record Alex's school day in a non-conspicuous manner. It's a good way to see how she's acting without another person in the room.

But again, before having any more communication with them, I would get an attorney.

As for the rages, been there done that, and you have my sympathies. DS still has them now and then, usually related to homework and/or computer use. And he's 12. Sigh.

    Bookmark   October 10, 2007 at 5:08PM
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seeking- Alex is clearly gifted. She clearly has people who love her; acknowledge and celebrate her talents. My "teacher" advice is to let that be enough for now. Alienating the school staff will not help her in the big picture. You are already cognizant of my belief system here- I have made it my life's work to appreciate and applaud every single child who has ever been under my charge. I have also been completely forthright and realistic about what "goes". When I went to a "pre-IEP" for my oldest, the staff "talked around" her autistic spectrum behaviors. I nailed them to the ground by staying specific and nonjudgemental.
School personnel is not in some sort of "service deprivation conspiracy". For God's sake, these are compassionate,qualified people who are working for just over minimum wage. If they were greedy or malicious they would be in some sort of private practice servicing the children of the wealthy who are determined that their progeny prove to be " above average". (I call this the Lake Woebegone Syndrome).
I think it is entirely possible that Alex's school staff is baffled as you are. And thanks to G. W. B. and his assinine policies, that means a Numbers Game rather than looking at the individual child and their circumstances. If Alex is achieving academically thank whatever God you believe in. And focus on finding her a "good match" in a teacher. Someone who embraces diversity, and treasures the opportunity and intellectual challenge to help all children succeed, not just the "easy" ones.
In the meantime, I personally have had better luck advocating for my students with a 504 plan. Of course then you have to prove that it is having an academic effect. Standards at the lower grades are low enough that gifted kids don't demonstrate a discrepancy early on. Which is why your best bet is still Finding the Right Teacher. Rage is another issue. Find someone who can actually establish a relationship with your child and find out whether the anger is situational or pervasive.
Finally. Don't internalize blame nor project it onto other caregivers. Sometimes kids are just wired differently. Period. No one's fault, and no one's blame if they can't find the "cure". Love, acceptance, and tough standards can help you stay the course until the child finds internal acceptance for the skill set God gave them.
My prayers are with you.

    Bookmark   October 10, 2007 at 11:44PM
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Seeking, what incredible challenges you face. Bless you and your DH for being loving parents.

    Bookmark   October 11, 2007 at 10:00AM
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Oh, nearly forgot to update my DH's health. The doctor wants him to irrigate it a couple of times a day with peroxide followed by antibiotic cream and be re-checked in two weeks. I was so sure they'd re-stich it but I guess not.

    Bookmark   October 11, 2007 at 10:02AM
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I have not been on GW much recently -my DS with special needs started college, got anxious/depressed and had to take a medical leave of absence -so I have been occupied with that. I have had time only to read the postings quickly, but I just want to say (as the parent of a special needs child and an attorney) that I think Sweeby and Paige are exactly right -- get a lawyer who specializes in special ed. The reality is that school districts typically act differently once a lawyer is involved (they shouldn't, of course, but they do). In terms of the MIND report, a special ed lawyer will be able to advise you. Good luck!

dirty fingers -so sorry to hear about your DH's problems --hope he has a quick recovery

    Bookmark   October 11, 2007 at 11:28PM
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Brachl, so sorry to hear about your son's troubles. I hope things work out for all of you. I know it's so hard sometimes. Thanks for your advice, too.

dirt, I am just amazed that the doctor isn't bending over backward to see your dh and make sure he's ok. It boggles my mind, in fact! I sure hope he is on the road to recovery and will not need the doctor again for quite some time. Thanks for your concern!

paige, if you have any advice for me regarding the rages, I'd love to hear it. I am getting desperate. Alex is sometimes physically abusive to family and herself. Did you deal with that? Alex has these huge circles under her eyes and is exhausted. Her face is almost always creased in frowns and grimaces, and it is beyond our imagery games etc. I am ashamed to admit that on more than one occasion I have lost it completely and resorted to spanking and rants of my own. Of course that just makes both of us feel worse and shows all of the things I'm arguing against with her as well as the futility of corporal punishment for it. Even the things that usually work--rocking, crooning, stroking, baths, tea, etc--are far less effective (plus you can't do them in the car). We seem to be most vulnerable in the car. There doesn't seem to be the signs of escalating trouble we had before (at least externally)--she just zooms straight to meltdown now, which makes it almost impossible to stop.

momskitchen, I appreciate very much your posting. However, I want to explain a couple of things. First, it is rarely the compassionate,qualified people who are working for just over minimum wage with whom I have a problem. In general, the higher the salary, the less connection there is with my daughter and the greater the push to remove her from services. Still, it isn't individuals (with a few notable exceptions) that are the problem, it's the system itself, which as you say is about number$. I find the following to be pervasive in school districts:
*they will provide the least they can get away with
*they do not want parents to know or exercise their rights
*the squeaky wheel gets the grease

Alex has had some wonderful staff members over the past several years and I credit them with much of her progress. I've been a big fan and outspoken advocate of the preschool, intervention program, and special ed departments in her preschool years that took her on without the need for a label (this is part of the same district, btw, she is in now). In spite of being "baffled," they recognized that intervention was key and thanks to those dedicated people, Alex received wonderful, quality educational experiences in her Autism Playgroup. They were so successful that she was able to move into a regular ed kindergarten, which is when the push began to remove her from services. They (not sure who) went so far as to use anecdotal remarks from the teachers and positive conversations between the teacher and me about Alex's progress to show that she didn't require anything further.

Yes, it's true--she is a baffling case. I'm baffled, the teachers are baffled--but the ones who are making the decisions have NOT got the right to be baffled. Why? Because NOT ONE OF THEM would even know her if they saw her, nor would she know them. How can the school psychologist glibly state that Alex has no problems when she HAS NEVER EVEN OBSERVED her?? She has told us she is too busy for Alex, but she had enough time to gather "evidence" to "prove" that Alex does not need any assistance. Why couldn't she have made just a little bit of time to talk with Alex? She would have learned so much. Even Alex's case manager has only observed her from afar on 2-3 occasions and has never spoken with her once.

Anyway, I have seen that I must proceed with caution. Of tantamount importance, of course, is my daughter, and I will do what I can to see that she gets the assistance she needs and is entitled to. It is unwise to put blind faith in any institution in seeing that the best interests of your child are served; the schools are about as good at that as the courts :)

We're going to Disneyland today! It'll be the first time for the twins, and they're so excited they can hardly stand it. Plus big sis is flying down from Seattle to come with us, too! I was hoping DS could make it (he lives in Bakersfield), but he will be away for work. We'll be gone Fri-Tues. Wish us luck ;)

    Bookmark   October 12, 2007 at 4:12AM
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Oops! Didn't mean "tantamount," I meant paramount, LOL!

    Bookmark   October 12, 2007 at 4:39AM
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Seeking, hope you all have a great time at DW!

    Bookmark   October 12, 2007 at 11:13AM
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Ack! Our flight was cancelled. They're going to shuttle us down to Sacramento (2 hours away) and fly us down late tonight. We have to leave here at 4 and our flight doesn't go out until 8:30 and then it gets there at 10:08 and then we have to take a van to the hotel, so we'll be there just before midnight. Bummer--we lose the whole day, and since I have oldest dd's ticket, she can't get into Disneyland and she can't check into the hotel. Kind of makes me mad that we blew a whole day on a park hopper pass for 6 of us, too. The little ones were crying because they thought our whole trip got cancelled, so at least we still get to go. I know these things happen but it would have been nice to have something fun happen right now.

    Bookmark   October 12, 2007 at 4:22PM
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If it helps, Seeking, there's an active market for unused Parkhopper days on eBay. (At least there used to be.) You might be surprised at the 'rebate' you could get back after your return.

Have a wonderful trip! (And you know about the special needs pass for kids with autism? Good for the whole family. Just go to town hall and let them know your DD is autistic and can't tolerate waiting in long lines.)

    Bookmark   October 12, 2007 at 9:35PM
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Wow! Thanks, Sweeby--I was going to toss our 5 parkhoppers but then I read your post. I sold them on ebay for $186! Woohoo! I was grousing about having paid an extra $50 (total) for the 5th day we didn't use, and I ended up making $161 after shipping (the guy paid $25 to ship them next-day). Lemonade, lemonade. Nothing like making lemonade to put the smile back on your face :) Even nicer is that the guy who bought them was ecstatic as he can convert them to annual passes for his family, something you can only do with 3-day or more parkhoppers. It was a cheap way for him to get passes and I like that it's a win-win for both of us.

We had a great time! The girls loved Disneyland/CA. Alex did pretty well but I saw something I haven't seen in her before. She was so nervous or whatever that she chewed non-stop on her sweatshirt. It was soaking wet! She switched to a little rubber thingy I attached to the zipper (couldn't find any gum). This chewing is not something I've seen before and lasted the whole trip except when we were in the hotel.

I did not know about the special needs pass. I'll definitely keep it in mind for next time.

I got a call from Far Northern Regional Center and they've reopened Alex's case based on the newer report. Yay! It gives us extra leverage.

    Bookmark   October 18, 2007 at 10:28PM
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Thanks for your update. Glad you had a good time.

Update on my DGS - He took second place in Special Olympics bowling. Since we got him re-classified from Asperger's to unspecified learning disorder, he has been able to join SE. He loves bowling and swimming.

His older brother now 14 has spent 19 months at a facility for sexual offenders. He has spent most of his time since age 9 in residential facilities. Part of his conditions of release to a regular facility was to admit his physical abuse to our DGS. He heavily resisted doing so for a year but finally did a couple of nights ago. The boys were able to see each other for the first time in two years. It was gratifying to watch the other DGS read his letter of heart-felt apology and to watch our DGS puddle up and nearly cry. It was great too to see the real affection they still have for each other. With barely a day's notice, other DGS was transferred. He will be close to his mother and grandmother now.

    Bookmark   October 19, 2007 at 10:18AM
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Glad to hear that Seeking!

FWIW, the chewing isn't that uncommon in our kids -- it's a sensory and anxiety thing. There are occupational therapy 'chew toys' designed especially for kids to keep them from chewing clothes, pencils, fingers,etc., though some parents have actually bought chewies designed for pets... (Not recommending - just observing.) You might want to document this as it is a sign of her increasing anxiety level, and that she's struggling to cope.

On another note, I could sure use some input from you all. I had a regularly-scheduled progress meeting with my son's school earlier this week and am not comfortable with the outcome. I've been a bit concerned with the content of his math work (IMO, inappropriate and too difficult), so I brought it up in our meeting. Last year, he was nominally in the 4th grade and his math instruction was at the 2nd grade level, which I though was very appropriate -- challenging, but do-able. And at his annual IEP meeting last year, his math goals were written specifically based on our state's 3rd grade math standards. (The school initially drafted something that sounded good but was 'fuzzy' -- I didn't sign, then copied a selected few of the state's standards, word for word, which were adopted.)

So this year, the work he has been bringing home appeared much too difficult -- it looked like 5th grade math to me. But, he was given tools and strategies -- things like printed multiplication tables to use and 'how too' rules to follow -- and with a lot of help from me, he has been able to complete the work. On his math tests, he has been given extra time, a quiet room, allowed to use his tools and rule sheets and has brought home grades in the 80's, which I think are good. BUT - I don't think he actually understands the material. I think it's more a case of 'trained monkey syndrome' -- just follow these steps and you'll get the right answer. What are you doing? Why? -- No clue. Case in point - Prime factors and long division. (Long division? He's never even seen division!)

This is essentially what I brought up in our meeting. And the IEP team's response was that yes, this was 5th grade math, and that DS was surprising them be how well he was doing, and that he was really benefitting from the challenge. They also pointed out that be having him learn the same material as his peers, he was more involved and engaged in the classroom, and was having fewer behavior problems. I have to admit that all of this is true. BUT - This child has never been taught 3rd or 4th grade math, and I think these are too important to skip. (In Texas, that's when you learn basic multiplication, division, fractions, decimals and percentages.)

So I bring up my concerns -- Why is he learning how to identify prime factors when he doesn't understand the concept of division? And they answer "Because that's on the 5th Grade TAAKS" -- the standardized test the state uses to measure student and school performance in the spring. Me: "OK - But shouldn't he learn multiplication first? And division? Aren't those important CORE concepts?" Them: "We can send some practice sheets home with you." Me: "Practice? You practice something you know -- He doesn't know multiplication because he's never been taught it." Them: "I'm sure he'll pick it up with no trouble. Great software programs... Lot's of fun..." So the conversation drifts into other areas. I try to bring it around a few more times and nail down something specific, but it never happens. Somehow every time I mention multiplication, they mention TAAKS. The meeting ends. Everyone is smiling and nicey-nice, but I've got that feeling in my gut...

NOW I think I get it. Apparently, the school will no longer be allowed to give my child the "special" test for kids in special ed -- He will have to take the same 5th grade test the other 5th graders take. And the school, which has a 99%+ passing rate, is thinking about keeping their 99%+ passing rate and "exceptional" ranking. So my "exceptional" student is being squashed and pounded into that nice round hole because that's what our state measures against. Instead of teaching to his needs (which they honestly appeared to do last year), the school is clearly thinking about their own needs -- a high passing rate on their standardized test!

State law may now require that he take the 'standard 5th grade test -- which will pressure the school to teach him 5th grade material.
But doesn't Federal law still require that the school teach material that is appropriate for him?

So what should I do now?
I want them to teach him 3rd grade math. That's what is in his IEP.
But I also apreciate the benefits of including him in the 5th grade math classroom, and he is actually getting some of the math -- graphs, basic probability.
And I do understand the school's desire to do well on their own tests --
But I want THEM to teach him multiplication, division, fractions, decimals and percentages. NOT ME.
I should clarify that I already work with him 45-60 minutes per day on outside private reading instruction, plus the 60-120 minutes per day it takes to complete his homework. IMO, any more is too much to ask any 11 year old (or parent) to do.

    Bookmark   October 19, 2007 at 10:39AM
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Oh dirt, what a tear-jerker!! I'm glad your DGSs were happy to see one another and that things are looking up for older DGS. I honestly don't know what you wish for in a case like that, but you seem like such a wonderful, caring GM and I'm glad they have you in their lives.

That is really cool about DGS's bowling! Interesting about the labeling. I've noticed that Asperger's seems to be a label that excludes a lot of services in my area, whereas the simple autism label opens doors. It's all very strange sometimes.

Oh, btw, Alex did exactly the same thing this year with the paving tiles in Tomorrowland as she did last year. There are little dark gray diamond tiles interspersed in a stamped pattern in the concrete. She walks through on her toes in some sort of pattern, making sure she always steps on a dark gray tile. Makes it hard to get through that area as she's always looking down and can't go too fast. Thank goodness the crowds were light!!

One last little off-topic complaint. WHAT is the deal with strollers???? I think they're great for little kids, but we saw thousands of them with 8, 9, 10-year-olds in them. I'm not talking about kids with any disabilities--I realize some autistic etc kids need strollers--just regular kids. Everywhere. No wonder our kids are getting fat!! I think a lot of them go straight from strollers to Rascals or whatever those riding things are called. ECVs, maybe? A lot fewer of those this year than last, though, because Disneyland stopped renting them out and you have to bring your own. Last year they were EVERYWHERE and kind of a hazard, IMO. This year we saw a few that had riding boards on the back and the whole family rode along. I'll tell you, though, that a few more days in DL and I'd probably need one too--there is very little there to eat mealwise that isn't 5000 calories!!!

    Bookmark   October 19, 2007 at 10:45AM
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Seeking, glad to hear Alex and the rest of you had fun. We went through the chewing thing as well. DS chewed through all of the trim on the collars of his winter jackets. He has stopped that habit and has now turned to picking at things, especially himself. Mosquito bites turn into infected sores. We're working on that one now.

Sweeby, you hit the nail on the head. As for what to do about it, I would think they should provide him with direct instruction in the basics of the math he is learning. Or, ideally, he should have math that is tailored to him, combining 3rd and 5th grade topics. Is there time in his schedule for additional pull-out?

I hate this "teaching to the test" stuff. This is all caused by the No Child Left Behind Act. I'm surprised your school is just now requiring all students to test at grade level. It happened with us a few years ago.

Seeking, you asked earlier on this thread about dealing with tantrums. I have never found a great solution to this one. My reaction has changed over the years. I now am confident that DS won't do anything to hurt himself, so I just remove myself from the situation, which usually means going up to my room and closing the door or going out to run an errand. Then he has no audience and things generally calm down quickly.

When he was younger I couldn't always do this, because he was more apt to engage in risky behavior. So I'm thinking back to what I did. The key is to try to maintain a therapeutic attitude. Give her lots of sympathy and validate her feelings when she starts to ramp up into a tantrum - - "it looks like you're really mad", "that must be upsetting to you", etc. Somehow, hearing someone voice it seems to help sometimes. I will say try to stay calm through the tantrum, but honestly, I lost it on many occasions myself. The length and intensity of these tantrums can be so emotionally draining, and they often happen when we are emotionally taxed to begin with. So please forgive yourself for losing it on occasion - - you would have to be a stone not to. And, frankly, on the occasions when I did "lose it" (and we're not talking about beatings here, rather a mom's-head-spinning tantrum of my own and perhaps a light spanking in really dire times), it sometimes had the effect of snapping DS out of it. Not that I recommend going that route.

So, I guess my advice is to just hang in there and give yourself lots of TLC every time you and Alex survive one of these times.

With respect to medication, there are medications you can give "prn" (as needed) for really really bad tantrums when you are afraid she might injure herself or others, etc. You might want to talk to a psychiatrist about that. Have you found one yet?

    Bookmark   October 20, 2007 at 10:15AM
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Sweeby- thank you for validating what every teacher in America is thinking. At night I dream about reteaching for those kids who actually are being "left behind". Of course it is just a dream. Ironic that you should be from Texas. It is GW's policies that put us all in this current cycle. After 33 years in teaching I can appreciate that is just a cycle, and the pendulum will swing again. That doesn't help your child, or this generation of students. There are no words for me to express my resentment towards a President whose own high school GPA was a 2.5 and yet managed to get into Yale with that and a combined SAT score of 850!
You are absolutely right in wanting your child to know the basics of math before being expected to move forward. Here is what I tell my students:
"All of us will learn to do math. Some of us will learn now, some of us later. I will do my best to teach all of you. On any given day some of us will be struggling to learn the concept, some of us will be learning the "trick", and some of us will already understand the lesson and need to work on fluency and accuracy. We all need to learn. I am going to teach you both the concept and the "trick". If you don't understand the Big Idea, don't worry. Your Math Brain just isn't ready yet, but trust me. It will be. So learn the "trick", and don't worry about it. Some day you will be judged by your integrity, how hard you work, and your lifeskill of never giving up. Right now, schools are using test scores to judge you. Don't worry, it is not about how smart you are or whether you can get to college. It is about your ability to take a test, and be relaxed enough in that environment to do well. I know how smart you are, and how hard you work. I believe in you, and know that you will do your best."
I know it doesn't help a lot when you have a child with special needs, but believe me when I tell you the current cycle in education is a disaster for all children. History will prove this to be as big a mistake as the Whole Language movement.
I am very successful at helping students learn. More importantly, I am very successful at helping students love themselves and work hard within their own skill sets. After all these years I know that you don't just "throw the baby out with the bath water", and despite pacing guides and this stupid Numbers Game I still find a way to actually teach.
At my school we get kids "caught up" in a variety of ways. I work from 6:30 am-6:00 pm and I have students with me most all of that time. Not for extra pay, or to improve my test scores for some ridiculous merit pay scheme. I do it because it is my job, my passion, and my commitment. This is the talent God has given me. This is the niche I have been lucky enough to find. It is my joy and and my responsibility to step up and do what needs to be done. Sadly, most of the "real" teaching happens well before, or well after, school hours.
Ok. I am putting my soapbox away. :)

    Bookmark   October 20, 2007 at 10:30PM
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Tomorrow is our IEP, so I'll post about how it goes.

paige, thanks so much for your kind post about tantrums! I sometimes feel as though I am running blindly through an obstacle course and not doing too well. It seems like others know instinctively how to deal with these things while I flounder about and then lose it myself sometimes. It was reassuring to hear that others have the same issues, which I intellectually thought to be true but emotionally began to doubt. Interesting about your son's chewing turning to picking--I wouldn't be surprised if this was true for us as well. I struggle with that myself :) Let me know if you come up with any good strategies.

I forgot to add one new component that we saw at Disneyland. We'd never been out during the fireworks before and this was the first year we tried it. Alex HATED the fireworks. She planted her fingers in her ears, squeezed her eyes shut and hid her head in my sweatshirt. She particularly disliked the booming noises.

The tantrum episodes have diminished quite a bit since we got back from our trip. Do you think anticipation of DL was the reason for so much tantrum activity?

    Bookmark   October 23, 2007 at 12:46PM
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Seeking, yes, I do think the anticipation of Disney increased the tantrum behavior. That was often the case for us when a big event was coming up, even a fun one. DS often has a negative reaction to any change in the "regularly scheduled program," especially anything requiring lots of different transitions. This was especially true when he was younger. In this regard, routine is your friend. Not being a creature of routine myself, I found this to be very hard to deal with.

DS is not a kid who takes well to waiting in line, crowds, heat, anticipation, etc. Our first trip to Disney, when he was 3, was a nightmare. He was also afraid of the dark at the time, which ruled out most of the rides except for Dumbo, which was nothing but a glorified carnival ride which we had the pleasure of waiting 2 hours to ride on. The best place for him at Disney World was Epcot, because we could walk around the countries and see the street performers without standing in crowds and lines.

We went again when he was 7, and this time I booked the trip very last minute and left the day we booked it. No anticipation, no nerves, just "wake up, honey, we're going to Disneyworld." That worked out much better. I also controlled his exposure to his triggers better. We avoided crowded times of day and went back to the pool to soak instead of fighting to stay in the park. Of course, it was easier for me with only him to please. With more than one, the other kids tend to have to compromise more than what seems fair to them.

After all these years of various vacations, I will say that DS's favorite was going to the Bahamas and snorkeling. He was intrigued by that "other world" under the water, and the peace and calm he found there. It was very much a no-pressure vacation for him. He also likes any vacation where we rent a house, so we have a "home base". His least favorites were the first Disney experience and a trip out west that required lots of driving and a fairly strict itinerary, with no more than two nights at any destination. While he enjoyed many of the sights, the constant transitions were very anxiety-inducing for him. He would prefer to find one restaurant he likes (no small feat) and eat every meal there. That's why renting a house (and having a kitchen) works so well for him.

HTH. And for tomorrow, good luck. Take lots of notes about the procedure they are following and what they tell you. And brace yourself - - the element of surprise works to their benefit. Most importantly, don't sign anything at the meeting itself! Bring it home to think about it. You already know these things, just reinforcing.

    Bookmark   October 23, 2007 at 8:46PM
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We had our IEP yesterday. I can't even tell you how it went. We are very confused so I guess I can say it wasn't great. However, it wasn't awful, either.

The gist of it is that the school district says that Alex doesn't qualify for SpEd because she isn't in a box that can be checked. Yes, we have the CO report that says autistic, but they know the MIND report says not autistic. Therefore, they must test her themselves (how is that done??) in several areas. My dh signed the addendum that allowed this. The reason he signed it is because they will start giving her limited services right away with the signed addendum. Anyway, pending the findings (which now stretch us out to Christmas), we remain on an IEP.

I wish I had listened to you guys and gotten an advocate ahead of time. I thought I was so prepared with my arguments, and in some cases we did really well with our side of things. But the crux of the matter is that they refuse to accept the autism label and that leaves us without services unless further testing indicates that is what Alex has. I am still waiting to hear back from the Regional Center to see what they have to say about it.

    Bookmark   October 25, 2007 at 4:17PM
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Seeking, I'm sorry that it didn't go as anticipated. They really do have the advantage over parents because the law is so complicated. It sounds like they have placed Alex in a diagnostic placement. What type of testing are they going to do?

You are actually in a better position now, because you know exactly what their position is and what they will be testing to defend. It's time to get a lawyer or another advocate before your next meeting - - someone who knows the law as well as the disabilities language.

    Bookmark   October 26, 2007 at 7:06AM
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Sorry to hear that Seeking --- Of course, if you had brought a lawyer, you might now be saying "I don't know why *that* was necessary..." -- But, there's certainly no point in beating yourself up now. Just focus on getting Alex the services you feel she needs.

I'd try to find out exactly what tests and subtests the school is proposing to give her. Read the consent document with a fine-toothed comb, and if it's too generic, you might want to consider 'withdrawing' your 'blanket' consent and writing a letter clarifying that you will consent to specific tests that you deem appropriate but that you need to know and approve which tests they are going to use. (Run the school's specific testing plan by your Colorado team and research the tests on your own before agreeing.)

Why? Different tests - even those that purport to measure the exact same thing - will give very different results. So it is entirely possible for the school to put together a group of tests that will pretty much guarantee Alex 'doesn't qualify'. Or another group of tests that is pretty much guaranteed to qualify her. I've seen tests of fine motor skills that place my son in the 60%th percentile and tests of fine motor skills that place him in the 1-2% percentile. Yet both tests claim to measure the same skills. Guess what? The school says he doesn't qualify for OT...

But yes, do get that lawyer now...

    Bookmark   October 26, 2007 at 10:25AM
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Do you mind if I enter your conversation a bit? I've been scanning through this thread and I'm interested in what you all have going on. However, it's kind of tricky to follow, not knowing any history of the people in question. I'd love it if some would care to share kind of a simplified version of what their children are dealing with.

I have a 5yo who is... well, I'm not sure. We've had our first visit with a behavioral therapist and we're both excited about that. When she's on her game she's awesome, and when she's not, she's equally awesome but on the other side of the spectrum. She's had OT for sensory issues, and she has alot of anxiety issues and most recently she has alot of anger and emotional control issues- becoming aggressive and extremely uncooperative.

At any rate, this past month has been a huge trial for us, and at times when I've posted on 'parenting' boards I've been met with really harsh responses. I'm thankful those people have never dealt with a child who has been sending them over the brink of sanity. I'm hopeful that perhaps some of you will, unfortunately, be all to familiar with the feeling.

    Bookmark   November 10, 2007 at 10:59PM
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Hi Sammi,
You're not barging, everyone is welcome here. I'm sorry you're 5 yo is having trouble. Can you be more specific about the types of behaviors you are seeing, and what her history is? For example, did she hit her developmental milestones on time? Is she having difficulty learning letters and numbers? Was she a late talker? That kind of thing. That might help some of us who have "been there" offer some advice.

My 12 yo ds has been diagnosed with bipolar and learning disabilities. Both are in his family history. When he was about 18 months he started having raging tantrums that would go on for hours, despite the fact that I followed all of the typical parenting advice (don't give in to tantrums, don't pay them attention while they are having one, etc.). In his early school years he had significant anxiety about going to school and difficulty reading and writing. His tantrums escalated to the dangerous point and he had significant mood swings. We got help and he has been doing much better since then, with the exception of the learning issues, which continue today. I am now starting to wonder about some possible Autistic/like symptoms that we had previously chalked up to anxiety and bipolar. We will have *another* evaluation done this year to investigate that. We are also dealing with all of the stresses associated with adolescence (remember middle school? Multiply the anxiety and volatility of a typical preteen times about 100, that is my son right now!). On the positive side, DS is insightful, compassionate, a loyal friend, funny, loves animals and, despite his false bravado, responds to lots of love and affection. I sometimes have to remind myself that he often needs the most love when he is acting the most unlovable.

That's us in a nutshell. There are a couple of moms on here who have autistic children as well. I'm sure we can offer you lots of insight (and much-needed empathy) if you share some of the details.

    Bookmark   November 11, 2007 at 11:27AM
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Hi Sammi - and Welcome! I'm mom to an 11 y.o. son who has global apraxia, an abnormal EEG (rare seizures), severe learning disabilities (borderline IQ), and has been diagnosed by most experts with either PDD-NOS or Autism, but even while they're diagnosing him, they'll admit that's not exactly it - just the best fit. We think it's something genetic since, whatever it is, he was born with it. At this point, we just know it's not one of the 4,000 'most common' genetic disorders -- so SWaN Syndrome (an acronym for 'Syndromes without Names').

Luckily for us, our guy is very affectionate, outgoing and even tempered. On the downside, he's very affectionate and outgoing with others too, and doesn't relate 'normally', so now that he's not so "little and cute" he's starting to "creep out" some of his peers. And he just doesn't get it...

The more you post about your child's strengths and challenges, the more we can help.

I'm going to post a link to an Autism Speaks website with some fascinating video clips comparing young children with autism to typical children. It may not be of any relevence to you Sammi -- but maybe someone here can get something out of it.

Here is a link that might be useful: Video clips of young children with autistic disorders

    Bookmark   November 11, 2007 at 9:49PM
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Sweeby, I could not get the clips to play for me. But I'm glad you posted, because I could use some guidance. In your experience, can a child who craves social interaction and has several good friends with whom he is reciprocal and empathetic still be on the autistic spectrum? DS has some symptoms, such as trouble with transitions, need for certain things to be a certain way all of the time, head banging as a baby/toddler, has meltdowns when upredictable/unexpected things happen, late speech, reading/writing disabilities,lack of eye contact, extreme sensory sensitivity, doesn't often start conversations and often has difficulty maintaining them (unless they are a "high-interest" area), and can be fairly concrete in his thinking. However, he also can be a very "deep" thinker, appreciates and engages in sarcasm and satire (current favorite t.v. show is The Colbert Report and loves Monty Python), and had an active imagination as a young kid. What do you think? Is it worth going through another eval?

This came up for us because I'm reading Born on a Blue Day by Daniel Tammet. The author is an autistic savant, and he has the unique ability among autistic savants to be able to explain his feelings and how he thinks. I highly, highly recommend this book to anyone who knows someone who is autistic, or anyone who is just interested in the subject, but especially parents of autistic kids. It gives invaluable insights into those "what was s/he thinking" moments we all have as parents of special needs kids. In any case, many of the behaviors and thinking patterns Daniel Tammet describes I have seen in my son.

    Bookmark   November 12, 2007 at 9:18AM
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Good question Paige --

And I'd have to say I think the answer depends on how you define 'autistic spectrum'. With a fairly broad definition, then definitely. At my son's former school (almost all kids DX'd with autism spectrum disorders), there were more than a few kids who were social, had 'best friends', imaginations and reciprocal (but odd) conversations. But if your definition of autism is narrow, then you could reasonably argue that a craving for social interraction and the ability to empathize and have reciprocal conversations 'rules out' autism altogether.

Personally, I don't think it's that black and white at all, and have come to believe that the whole concept of Autism as a discreet disorder is flawed -- that really there are a half-dozen or more disorders sharing a common name, and that the lack of distinction between what I perceive to be different disorders is thwarting research into effective treatments.

Bottom line, I have stopped looking to "the experts" to give me answers, because I don't think they have them. But then, my son hasn't benefitted significantly from any of the various medications we have tried -- so now, he's not on any. And all the experts can tell me is that he's weak here, strong there, typical in this way, atypical in that way -- and none of that is news anymore.

From what you've written, you could probably find an expert to DX your son with an autistic spectrum issue (Aspergers); and you could also find one who would disagree. But it wouldn't change whatever it is that your son does have. The question to ask yourself is if it would change his medical treatment, therapy, or educational programing --

    Bookmark   November 12, 2007 at 10:37AM
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Hi, Sammi!

I'm the OP and as you've probably gathered, we've had a lot of ups and downs in the "what is it?" arena. We still don't know. Our daughter is now 7 and has shown autistic-like symptoms since she was a year and a half, and yet...she never really fit the criteria, either. We started off not caring what it might be called, just happy that she was receiving excellent preschool education that included daily sessions in an autism playgroup. She got OT and speech help as well. When she started school, she was on an IEP for OT and still attended playgroup in the afternoon. Once first grade started (last year), she was taken out of OT and put on a very limited IEP that basically gave no services but was a watch-and-wait type of thing. The school wanted her out of special ed and we fought it. That's where we still are. We now find that we need a label in order to keep receiving services, and it gets quite complicated. Autism in general is well covered; however, certain types ("high functioning," which includes Asperger's) don't qualify for the same services. There are many gray areas and a lot of controversy about what is and isn't autism/autism spectrum. We're being (we feel) dragged around on this labeling tether and getting different responses wherever we go.

After doing much research, listening to experts, attending support groups, and avidly reading all of the posts here, I have concluded that the terminology is outdated and far too circumscribed. I honestly feel that experts have made the definitions too cut-and-dried and that they are now realizing it but kind of stuck with it. There is really such a wide range within the spectrum that the old ideas no longer should be considered sacrosanct--for example, it is now commonly understood that autistic children may indeed seek out relationships and try to establish communication with others. Unfortunately, the Manual that is used to determine diagnosis, the DSM IV or whatever number it's on, will not be updated until 2010, I believe. This means that legally, places are bound by a definition that may no longer be considered valid but is still the legal determinant. One of the areas that is most behind is early onset bipolar. They still must go by the adult definition, even though it may manifest in children in a completely different way.

Anyway, parents who deal with special needs children recognize that their kids are different, but we frequently don't know what we need to do to ensure that they receive the best support and assistance. You hate to label but in many cases you can't get help unless you do. Then, when you think you're finally going to discover what "it" is, you're told by the testers, the experts, that they don't know. Which is all well and good except that you can't check "I don't know" on an IEP box etc. Or one place tells you it's definitely an autism spectrum disorder while another tells you that it is psychiatric in nature and there is no autism component. In short, even when you get a diagnosis, it is difficult to trust that it is correct. I think that's where parental instinct comes most into play. I believe that my daughter may well have a psychiatric component to her troubles, but I also am convinced that it has a neurological basis as well.

So, what to do? At what point do you try medication, for instance? Do you go see a behavior therapist, a child psychiatrist, a child psychologist, or what? Do you continue to fight to keep your child in special ed or do you listen to the school who tells you that your child doesn't qualify and will be better off without the stigma (yes, we were told that by the school psychologist)?

I am sorry that I can't help you much, but I will tell you that there are so many extremely helpful, knowledgeable people here who can assist you with your questions. You've already heard from paige and sweeby, who have been my lifelines.

We got Alex's report card this week and she got perfect marks. I mean, she didn't miss anything on any of her benchmark tests and every other area was marked as either 3 or E, the highest you could get. She reads 211 words per minute (the highest for her grade was given at 53). While I'm proud and pleased as a parent, I am nervous that this will be used as proof that her problems don't affect her academic performance. In a sense, they don't, but the funny fact of the matter is that the very nature of her autism or whatever it is is what makes her the perfect student. She is hyperlexic (taught herself letter sounds and numbers before starting school and was reading at a junior high level in kindergarten), a perfectionist, and a rule follower. She has the most astounding memory. She joined Brownies and they gave her the Girl Scout Promise and Oath. She had the entire thing memorized in the car before we got home (10 minutes) and can rattle it off with full emotion and no errors: On my honor, I will try to serve God and my country, to help people at all times and to live by the girl scout law. I will do my best to be honest and fair, friendly and helpful, considerate and caring, courageous and strong, and responsible for what I say and do, and to respect myself and others, respect authority, use resources wisely, make the world a better place, and be a sister to every girl scout.

The perfectionism and pressure she puts on herself is more than she can bear sometimes.

Amazingly, her IQ test score was 83 and yet her achievement level was off the chart. When I asked MIND institute to explain this discrepency, they said they didn't know. When pushed, the psychologist said, "Well, she's an overachiever." Yeah...a kid can "overachieve" 100 IQ points?

I don't know where she is. In some areas she's Exceptional. In some she is Extremely Deficient. Only time will tell, I guess, how the lows and highs will resolve themselves into the whole. Meanwhile, we fight on and struggle with our own doubts and guilt.

    Bookmark   November 12, 2007 at 9:53PM
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Thank you so much for the responses.

I'll give a brief synopsis of our story. DD appears to be a typical kid to anyone who meets her. She had some developmental delays early on- such as being floppy and not walking til 18mos. The ped told us to put toys out of reach to encourage her to try to get them, and she'd just look at them and get an 'oh well, can't reach it' expression on her face, and content herself with looking at the ceiling. Also, at her 6month appt her head had grown from normal range to 95+percentile in circumference.

Otherwise she seemed typical, although dh and I would sometimes say to each other 'Its okay if she's not an intelligent child- we'll love her no matter what.' She just came across as being perhaps, well, not the brightest bulb.

But, by this point, as a 5yo, she's clearly very intelligent. She's very observant, takes everything in, she's great at puzzles, letters, etc. In fact, seekingadvice's description is startlingly similar to dd. She taught herself letters before she was even speaking very well, her favorite letter was P starting at about age 2. She's a perfectionist and a rule follower, and is very distressed by younger sibs not following the rules. She's in a club that includes alot of memorizing and she's finished the book that's supposed to last the average K kid all school year, and she gets very upset if you try to help her while she's practicing memorizing the next thing.

We are seeing a behavioral therapist because right now her angry tantrums are beyond what I can deal with. She's very physical (always has been when she's angry with us, biting, hitting, head butting, etc, although she really tries hard to control herself due to her rule following nature, at times it is just beyond her. But if you say no biting, she'll hit, and if you say not hitting, she'll headbutt, and if you say no headbutting, she'll.... find some other way to be physical). We've only had one visit with the therapist, who, thus far, says that dd has an 'angry guy' and that we can help her find ways to make the angry guy leave her alone.

    Bookmark   November 12, 2007 at 10:41PM
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sammi, I would start with an evaluation for autism. She does seem to have some of the symptoms. Maybe your pediatrician can recommend someone to do an evaluation. I'm not sure about this "angry guy" approach. It honestly sounds like a bit of quackery to me. But that's just my gut instinct - - maybe someone else will have some input on that.

Sweeby, thanks for the feedback. I agree that there are likely many sub-sets to the autism diagnosis. My DS definitely has a major mood component to his issues, but other symptoms are very much in line with autism. Frankly, I'm not sure that having another diagnosis would help him get the services he needs, but I will look into it. Thanks for your help.

Seeking, how is Alex doing at home? Some of what you said about Alex being a super-fast reader and memorizing things reminds me, honestly, of myself. I will have to go google hyperlexia.

    Bookmark   November 13, 2007 at 7:43AM
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Sammi, certain things sound very similar to my dd. Most people would never realize that my dd was different. She saves her meltdowns and rages for when she is at home, without others around. She can be very physical and aggressive and she can also hurt herself. That usually happens when she doesn't perform up to her own standards or when she is coming down from a meltdown (she'll hit herself on the head, bang her head against a wall, scratch, dig, or bite herself, for instance).

She has always been clumsy and awkward and has had trouble with motor skills, though she does well in gymnastics, oddly enough. Your description of your dd's memorization, pre-reading and reading skills, rule following etc are just like my dd's. We started out naming dd's rages "The Angries," and for a while we had some success with personifying them and dragging them out of dd and using some kind of fun/funny method of disposing of them--beating them with a pillow, flushing them down the toilet, etc. However, as she has gotten older, The Angries have gotten more sophisticated and resistant to expulsion. There isn't much buildup anymore; it used to be that it was an incremental thing and we could see it coming, but now it builds up unseen or while she is at school. Now she comes out of class and BOOM, there is the rage before we reach the car. Other times she is very fearful and needs the reassurance of adult company to get past things that might not seem scary to others. These things include going onto the playground in the morning before school starts, using a public restroom, walking past a loud machine. She has sensory issues, as you can see--she was always very afraid of the vacuum, the flushing of the toilet, loud bangs etc.

She loves and needs routine although she can go with a new one if there is some preparation for it and good motivation.

She tends to focus very intensely on an area of interest and totally immerse herself in it. It used to be Disney princesses, then princesses in general, and is now Harry Potter. She can mimic any accent. She used to tune out everyone and everything else and sing and dance to her princess songs or act out the videos. She was not interested in social interaction with other kids as a little girl and would avoid it if she could and ignore the kids if she couldn't. Now she likes to play with other kids but is very naive and "young," which is only now beginning to be a problem. She is very puzzled at the fact that her friends are beginning to pull away from her. She wants to be like them and she tries but she works from scripts and mimicry rather than out of a natural response so she doesn't really feel it, if that makes sense. She is going through the motions of, say, High School Musical play or Hannah Montana so that she can be part of the group, but she simply isn't in that place yet (for which I'm glad, actually). As of now, she has lots of friends but we're seeing this gradual shifting away and lots of angst from Alex over what she calls her friends "acting like jerks and being bossy and mean."

She loves to help others and she really feels compassion and empathy, which are all things autistic kids aren't supposed to experience.

She is rigid with herself and others about following rules and doing what you're supposed to do. She sometimes misunderstands rules and it is hard to break her of doing things she has gotten into her head as rules. For instance, it took a long time to get her to pick up a book where she left off--she knew the rule was to start at the beginning and read from left to right until the end, so she'd start over every time. She also doesn't do well with exceptions, so if the teacher tells the kids to read every night, she doesn't realize that it's ok to take a night off now and then.

She has this cute little thing where she will tell you something exciting etc and rock back and forth, front foot to back foot on her toes in a little pattern, and flap her hands. She has always done the hand-flapping, rocking thing. She used to walk on her toes almost all the time and still does it when she's nervous. She still sucks her thumb. She will put her movies or cds in a certain order and watch/listen to them that way. If she is watching a sing-along video, if she misses a word she will start the song over until she gets it perfect.

Those are the main things I can think of about Alex. Many of her earlier behaviors have evolved as she has learned coping strategies and watched how others behave.

Paige, Alex is up and down at home. She has times when she has rages every day for a week without us having a clue as to what triggered it, and then suddenly it's gone and she does very well. It worries me, though, that she can fly into a rage over something really trivial and smack one of her sisters. She seems to have a dark look on her face very often--furrowed brow, scowling mouth, unhappy and upset. I honestly believe that much of what Alex has comes directly from me; I taught myself to read at age 3, read my dad's doctoral dissertation at age 5, and generally preferred my own company to interacting with others. I learned French and Japanese from families living next to us when I was a little kid (don't know it now!) and picked things up immediately. I had a memory like Alex. I have always had a lot of sensory issues myself, was a head-banger as a child, still rock to this day and in many ways am so much like Alex.

Here are some very helpful hyperlexia websites that include comparisons to autism/ASD/Asperger's etc (it is still undecided whether hyperlexia is a spectrum disorder, subgroup within another spectrum disorder, or separate category altogether):
Hyperlexia, A Teacher's Guide
Good Hyperlexia Overview>/a>
Hyperlexia in Older Children
Discussion of Hyperlexia and What Kind of Syndrome it May Be
Inclusion Strategies for the Hyperlexic in the Classroom
American Hyperlexia Association
Comparing Autism, Asperger's, Hyperlexia
This link is a great one, with easy-to-understand overviews of many different syndromes, primarily as seen by school personnel:
Neurobehavioral Disorders, Including Rage Syndrome, Anxiety, Autism, Mood Disorders, Obsessions, etc

    Bookmark   November 13, 2007 at 1:57PM
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"But, by this point, as a 5yo, she's clearly very intelligent. She's very observant, takes everything in, she's great at puzzles, letters, etc. In fact, seekingadvice's description is startlingly similar to dd. She taught herself letters before she was even speaking very well, her favorite letter was P starting at about age 2. She's a perfectionist and a rule follower, and is very distressed by younger sibs not following the rules. She's in a club that includes alot of memorizing and she's finished the book that's supposed to last the average K kid all school year, and she gets very upset if you try to help her while she's practicing memorizing the next thing."

This is similar to my son's development. He has a condition called Nonverbal Learning Disorder, which may or may not be on the autism spectrum, depending on which researcher you believe. I think of it as Asperger's Lite. Below is a link for more information.

Here is a link that might be useful: Nonverbal Learning Disorder

    Bookmark   November 13, 2007 at 3:29PM
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Piggybacking on awm's post (thanks, awm!), I wanted to include a link that she posted to me earlier on. It is SO close to my dd that I keep trying to squeeze her into this box. In this excerpt from the link below They may have difficulty with abstract concepts, and may not grasp a new idea until it is put into words. Because their brain takes longer to process nonverbal information, they require more time to complete tasks and may have trouble transitioning from one activity to the next, you can see why NVLD doesn't quite fit my dd. Where a NVLD kid needs things put into words and has trouble with things that are written or drawn, my dd is the opposite. She cannot process verbal instruction and has to be shown through writing, diagram, or demonstration.

Otherwise, that entire link could describe my daughter exactly.

Here is a link that might be useful: NVLD

    Bookmark   November 13, 2007 at 4:26PM
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Hi seeking,
Personally, I think these definitions of the various disorders are relatively rudimentary at present. As research accrues, the definitions will change over the years. For example, 2 definitions that have gone by the wayside in recent years: autism always entails retardation; people with Asperger's don't desire social contact. Now we know better!

Nobody fits these profiles perfectly. You don't have to have every symptom. My NLDer doesn't fit the classic profile in some key ways: he has excellent math skills; he grasps abstract concepts very well (he's a philosophy major); he "reads between the lines"; he has no trouble with maps & finding his way around; he was a chess champ (definitely a nonverbal skill). Like many others with LDs, he loves video games (no verbal skills required there!).

But he has enough of the other NLD characteristics so that an NLD diagnosis makes sense: unusual verbal ability at an early age, keen memory, inability to integrate with his peers, background confusion, poor executive funtioning, social anxiety, hypersensitivities, poor facial recognition, laborious handwriting, physical clumsiness, difficulty dealing with change, lack of future think, can't form mental images, lack of self-calming mechanism, doesn't pick up on or misinterprets social cues. And at age 24, he still has post-school meltdowns, in a way. Now it's just expressed in excessive crabbing instead of tears & wailing.

The rule following thing is interesting. These kids are slow to pick up on rapidly changing social situations AND are rigid in their thinking, so get very distressed when others don't follow standard behavioral procedures.

    Bookmark   November 13, 2007 at 7:54PM
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By the way, Sammi and AWM, welcome to this board. I post sometimes on the step parent board, but there are 2 trollish posters over there. The folks here are friendly and welcoming and understand because they've all been through a lot with their kids too.

    Bookmark   November 14, 2007 at 2:38PM
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awm, do you think it's possible for my dd to have nvld if it is verbal language that is the difficulty? My dd can do pretty well with written instruction and she always looks around to see how others are doing things (does well by example), but she blanks on verbal directions.

She has the same spatial difficulties as mentioned on the nvld sites, awkwardness, trouble reading social cues, and motor skill troubles. It's just the MAIN indicator, verbal vs nonverbal, that seems to be reversed.

    Bookmark   November 15, 2007 at 5:13PM
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Hi seeking,
It's possible. Directions of any kind are overwhelming to NLDers. It's the sequencing of tasks that trips them up (weak executive functioning). Doing 1 task is hard; doing multiple tasks in the correct order is difficult. Plus they can't create a coresponding mental image in their heads -- when it comes to doing things, most people picture the events in their minds to help understand them. Written instructions, simply laid out, are best. If the action isn't complicated, then yes, she can pick up on what the others are doing -- NLD isn't total disability, it's often just slower ability.

    Bookmark   November 16, 2007 at 7:00AM
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I seem to go around in circles when it comes to a diagnosis. I wish it were more absolute, like chicken pox or something :)

Alex is having some trouble with a friend at school. The friend is getting "bossy" (Alex's word) and impatient with Alex's lack of prowess in PE and recess games. This will be our first test with social difficulties, I think.

    Bookmark   November 16, 2007 at 9:43PM
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UPDATE 2/4/08

We had Alex's final testing done by a psychologist who specializes in autism. This, again, was done through the Regional Center. Her conclusion was pretty much in line with the MIND report. She doesn't feel that Alex is autistic or even on the spectrum. She recommended a child psychiatrist as well, since she feels it is likely a mood disorder. Alex had some pretty abrupt mood changes in the course of her testing. She also found some OCD, sensory integration problems, anxiety and possibly depression. She didn't actually witness or hear anything that sounded like depression, but it is often the cause of rage episodes so ought to be looked into.

Meanwhile, we have an appointment with an Occupational Therapist for an analysis that will include sensory integration. Luckily, this OT is a specialist in that area. We can continue sessions with her if it looks as though this will help Alex.

I am not sure what I think. I am not sure what we'll do if/when the recommendation is made for medication. I'm still so confused. I know we will likely lose our IEP, but we will be able to get a 504.

Alex has also been tested by the school, and though I haven't gotten the report back yet, I know what it will say. They aren't going to find anything. I've already heard from the speech person, who found nothing amiss. I told her I didn't expect that she would as that is an area of strength for Alex in the way they are testing her. It is the pragmatics that were in question, for which this person had no test.

Anyway, it boils down to the fact that we can't demonstrate that Alex is negatively impacted at school since there is no data to support this. There were some things last year that she had problems with, but this year she hasn't shut down, needed me to help her out onto the playground, etc. She tests very well and does very well in school. Socially, she is fine. She continues to have rage episodes and meltdowns at home, but as she's able to control it at school, it's felt that it is more likely caused by a mood disorder. If so, this is something she has had since babyhood.

I have delayed her next IEP until after we see the OT and the child psych.

I attended an IEP training workshop, which was invaluable, but now I do not think we'll be working with an IEP much longer. I'm still petrified about the predictions that have been made about Alex, most of which indicate that she will likely bomb out in school in the next few years (this latest psychologist disagreed, though). We've been told she will begin to suffer socially, but we've been told she'll do fine socially. I'm nervous about releasing her from special ed and then finding that she really needs it in a year and two but can't get back in.

Could someone please tell me again what the difference is between an IEP and a 504?

    Bookmark   February 4, 2008 at 6:57PM
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I've wondered often how things were going for you. It's gotta be frustrating for everyone in your family. My best wishes for you to get Alex the appropriate help she needs.

Just a couple of minor problems with DSGS lately. He brought his Game Boy to school which is not allowed by us or the school. A couple of days ago he threw a ball and hit a girl in gym class. His new instructor is kind of a drill instructor type, and DSGS doesn't like ANYONE, especially a man telling him what to do. He'll just have to get over it. He's lost his Game Boy and Wii (gifts from his other grandma) for at least the rest of the week. He might get bored, poor lad.

Sorry I can't help you with the IEP/504 question. Glad to see you posting again.

    Bookmark   February 5, 2008 at 11:01AM
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Hi Seeking - I also wondered what was up and hoped things were going well for you.

I don't know if this is something you're open to, but "Emotional Disturbance" is a valid IEP category -- Alex does not have to be on a 504 plan!

Everyone says that a 504 is NOT as good as an IEP, though I have to confess, I don't know the concrete specifics of exactly how and why, but it's worth finding out since your school seems SO DETERMINED to get Alex out of Special Ed.

From Wrightslaw:

Section 504 is a civil rights law that prohibits discrimination against individuals with disabilities. Section 504 ensures that the child with a disability has equal access to an education. The child may receive accommodations and modifications.

Unlike the Individuals with Disabilities Education Act (IDEA), Section 504 does not require the school to provide an individualized educational program (IEP) that is designed to meet the child's unique needs and provides the child with educational benefit. Under Section 504, fewer procedural safeguards are available to children with disabilities and their parents than under IDEA.

IEP versus 504:

The second site (the ADHD site) recommends listing what you want the school to do for Alex, and seeing if they will agree to do it under a 504 plan. If she needs "accommodations" more than "services" -- it might be OK.

    Bookmark   February 5, 2008 at 1:00PM
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dirt_yfingernails, it sounds like things are going ok for you? Seems like you're experiencing typical teenage stuff. Isn't it nice when the troubles are "typical"? I'm sometimes unsure how to gauge that, though :) I appreciate that you've been thinking about us.

sweeby, thank you for the response on IEP vs 504. It would perhaps be fine for Alex to be on a 504 since she is in a regular classroom with no (well, few) services now and doing fine. She has someone come in once a week to chat with her (20 minutes) in a separate area off the classroom and she is enrolled in a "girl group." They work on strategies for getting along, dealing with anger etc. That actually starts in another week and a half so I don't know how it works yet. There is also a kind of lunch club that is open to anyone who wants to join in. The kids who go play with each other under the supervision of a counselor so it's sort of a safe environment for kids who are a little awkward. Only the first thing (weekly chat) is specific to Alex. It's the only service that has been provided under her IEP.

But what if she begins having major difficulties with her school work? What if she is doing so well now because of her amazing memory and runs into real problems when memorization alone doesn't work? Will it be too late for her to be academically impacted if she's already off an IEP? I will use the suggestion you provided above and see what accomodations could be given her under a 504. The problems with that, as I see it, are that (a) it's difficult to predict what she will need, (b) you can't base an IEP or a 504 (we've been told) on what might happen, and (c) I don't trust the district to be honest about what they will do for her down the road. Or rather, I don't trust that assurances we get now about what they will do later will be remembered and carried out.

I need to remember to get promises in writing, don't I?

    Bookmark   February 6, 2008 at 3:50PM
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Well, things were going pretty well, but this last week and a half have been trying. One thing after another. He pushed a girl down. Threw a ball at another girl and knocked her down. Refuses to do work on a daily basis in all classes now. Refuses to do his required reading at home. He is given paper coins daily (I think 25 cents worth)at school and at the end of the week, they can go "shopping" for little items if they have enough money or save up and buy a larger item. Yesterday, the teacher said DSGS is doing better, he ONLY lost 15 cents! I don't think that is better, personally. He has lost his games, TV privileges and stuff at home but he doesn't want to earn them back very badly. He goes on streaks like that occasionally, testing the limits and our patience. Ah well, this too shall pass.

    Bookmark   February 7, 2008 at 10:33AM
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DSGS is still "on strike" at school and with homework. Sure hope he gets over this phase soon. I feel so disappointed with his behavior.

    Bookmark   February 14, 2008 at 11:11AM
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Hello all! Just found the "conversations" forum today after posting on a few other forums for months. I thought I'd chime in here as a special education professional. My specialty is learning disabilities (reading disabilities in particular), not behavior, so my assistance may be limited, but I can answer a few of the basic special education questions (like the difference between an IEP and a 504 plan).

The main difference is funding. An IEP has funding attached to it, based on disability categories, hours served, and particular services required. A 504 plan has no funding attached. A 504 plan is simply a statement of what accommodations a school will provide to ensure that a child doesn't experience discrimination based on a disabling condition.

This does not mean that the child will receive services from a special educator in the general education classroom on a 504 plan. I have seen circumstances where a child on a 504 plan was allowed to join an intervention group that was set up for a few classmates who were on IEPs. If those other children had not been in those classrooms, though, the children on 504 plans would not have received the intervention.

It is also easier to qualify for a 504 plan than for an IEP because the criteria are less stringent. The other main difference, and one that may apply in seeking's case, is the "stay put" provision. If a child is on an IEP and the case is taken to due process, the school is required to continue to provide services until the mediation process is completed. There is no "stay put" provision for 504 plans, although, in my experience, they tend to end up in due process much less often.

Hope this helps....

    Bookmark   March 15, 2008 at 1:40PM
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Hi guys...I haven't been around much in the forums lately, and I've completely missed this thread, I only just found it.

seeking, sweeby and paigect: hello old friends and I'm so sorry I never knew you all were dealing with special needs children. I can't offer any advice but I would have sent virtual hugs long ago.

My best friend's little boy, Logan, has been diagnosed as "on the spectrum" from a very young age, and he's been getting OT and special attention for sometime now. He's making really great improvements and we're all hopeful. He's three years old now.

I'm going to send her a link to this thread. She may or may not post, I don't know it's up to her. But I hope you all won't mind my inviting her if she wants to share.

I'm happy to "see" you all again, I just wish it was under easier circumstances. I'm thinking of all of you and your beautiful children and sending hopeful, happy, loving thoughts.


    Bookmark   March 28, 2008 at 9:41AM
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UPDATE: GREAT news below!!!!!

I am so sorry, but I had reached such a low point that I just couldn't even face posting about it. Our third round of evaluations came back as not autistic. The reports from the speech person etc did not indicate a problem, and everyone we saw told us that they did not offer anything that could help Alex. It was recommended again that she see a child psychiatrist, an occupational therapist specializing in integrative therapy, and a counselor. It took forever to get all of this set up as our area is kind of isolated and does not offer much.

The OT was excellent but could not help us with therapy as Alex's motor skills problem, it turns out, has nothing to do with her actual motor skills but is part of her visual/spatial processing disorder. I don't know why that excludes her from OT, but it does. She also is suspected of having an auditory processing problem and we had to set up an evaluation with an audiologist, which needs to be done when the child is 8 as it has a developmental component. There is therapy for auditory processing, which is good. So, we have that ready to go (Alex turns 8 in June) but haven't done it yet. We also had a recommendation to take her to a developmental optometrist (?) in another city for her visual/spatial problems. I was beginning to wonder if this train ever stops. Another doctor, another evaluation, another possible diagnosis thrown into the mix, and no two people in agreement.

However, we have finally learned many valuable things about Alex and how to help her. The IQ test just isn't an accurate measure for a kid like Alex. Many of her problems appear to stem from processing disorders. Coping strategies and certain training therapies seem to be effective for her much of the time.

We have decided to wait for now on the psychiatrist. I did call the one that was recommended by the last evaluator, but she works for the county Behavioral Health Dept and isn't available right now. I took that as a sign to wait. Meanwhile, we found an outstanding child counselor who comes with many recommendations from friends of ours who are psychologists as well as from the autism evaluator and the REgional Center. I called her and she agreed, though her case load is full, to see Alex beginning in a month! Yahoo! I will see how that goes and then decide whether a psychiatrist is needed/advisable.

But here is the great news about school: we had our IEP, and the school psychologist COMPLETELY CHANGED HER TUNE!!! She had requested to do her own evaluation and we agreed. She says it is obvious Alex has "something," and the team discussed services and accomodations that they will be writing up for next year!!!! Meanwhile, we signed a temporary agreement that will allow Alex to get services for the remainder of the year!!! I can't believe it! We sat there with our jaws dropped to our chests, as we'd been braced for the declaration that Alex did not qualify for anything. Instead, we get to keep her on an IEP (they did make a small push to switch to a 504 but we declined and they didn't press further) and RECEIVE SERVICES!!!! We've not really gotten those for the past 2 years.

Honestly, I don't know what changed. We had 2 people at the IEP (that we didn't ask for) that have not been a part of the team before now, and I think the case manager may have interceded on our behalf to bring them there. They are both important special ed people. The case manager has been seeing Alex once a week as a sort of resource person, someone Alex can talk to and "let down" with. She has therefore gotten a better view of what's going on.

Thanks so much, holligator, for your explanation about 504 vs IEP!! Big apologies for not responding to you sooner. I did read and use the information, but I simply couldn't face posting earlier when I felt like we were headed nowhere.

Ivette!!! So great to see you!!!! I'm so glad you posted. I hope your friend visits. Usually there is more action on this post, but since I abandoned it for a while I think things really slowed down.

I'll tell you some more news in a while, but right now, duty calls (in the form of 2 5-year-olds)!

    Bookmark   April 21, 2008 at 1:08PM
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That IS great news Seeking! Just the acknowledgement that she has "something" is a win. Because yes, there is "something". What to call it? Who knows?! And that IS frustrating... Your "wonder if the train ever stops" sentiment is right on target. But you CAN treat much of it, whatever "it" is, even without having a name for it, and that's just what you have to do. Eventually, "it" will either reveal itself more clearly, or be remediated into submission. (We're in a similar position with our 12 y.o. son, but 'lucky' in the sense that the school calls it "autism". I think, and many of his Dr's and therapists have agreed, that it's something else -- just haven't named it yet.)

Well - Congratulations on the good IEP results. That's major!

And on the Developmental Optometrist -- There were some threads here on Vision Therapy that you should search for, because that's what this is all about. The therapy is a bit controversial in some circles, but was VERY beneficial for my older son (dyslexic), and moderately beneficial for my younger son, whose issues were much more severe. If you think Alex has significant visual/spatial issues, it could make a HUGE difference in many areas of her life.

    Bookmark   April 22, 2008 at 10:24AM
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Thanks, sweeby! I do remember the threads about Vision Therapy and was wondering if that is what the Dev. Opt. was for. I did remember it was controversial and I hadn't been able to decide when reading the threads whether or not I believed it would work--funny now to be looking at it as a potential for *my* daughter, lol. It does give one a different perspective. If there is something that might help her visual/spatial issues (which are significant), then I'm sure willing to give it a try. I hope it's covered, though, because all of these things are adding up in a big way $$$$$.

I forgot to mention, though I think I posted about it earlier, that Alex has very significant sensory integration issues. In fact, much of the behavior that was earlier used as an indicator of autism in her appears now to be SI instead. At least, this is what the OT told us. Things like the chewing, hand flapping, toe walking, pattern-walking etc are typical self-stimming behaviors that are used by children/people with other disabilities besides autism, for the same reason I think. It stimulates their bodies to release chemicals that soothe (seratonin?). The OT recommended that we do certain exercises, massage moves, and give Alex the chance to use the muscles that affect those proprioceptive thingies. Things like gymnastics are great, because it stretches the vital areas but isn't as dependent on visual/spatial cues as other sports (at least at Alex's level!). The OT told us to give her some things to play with, squeeze, chew on as soon as she gets out of the classroom and to give her something she has to suck through a straw that is hard to move, like a Slurpee, milkshake, etc. We got a giant box of GoGurts from Costco, put them in the freezer and I bring one every day when I pick her up.

All of that is helpful in "normal" mode, but we're in a rough patch right now behaviorally and not much gets past the meltdowns at the moment.

    Bookmark   April 22, 2008 at 3:36PM
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Oh, I forgot to tell you guys something funny! You would think that a kid with serious anxiety trouble would prefer to remain somewhat in the background, but not Alex! She loves to be a "star" and when she found out that her school was having its annual talent show, she begged me to sign her up! Isn't that something? So I did, and she chose her talent (singing) and her song. She had to audition for it and was one of only a couple of second graders who tried out. She loves the movie "Polyanna," and she chose the song that Hayley Mills sings at the town festival in the movie. She got picked! On talent show day, she performed on stage in front of the whole school during the day, and again for the parents that night. She was the finale of the show and I was so proud!!

If you'd like to see her sing her song, here is a link!

Here is a link that might be useful: Alex sings in talent show

    Bookmark   April 22, 2008 at 3:48PM
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Absolutely precious, seeking! Your costuming skills are on show as well. Thank you for sharing!

    Bookmark   April 23, 2008 at 9:03AM
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Alex truly is precious! I'm so glad the 504/IEP info helped.

About the vision therapy (and other controversial therapies), my view differs somewhat from many of my colleagues. First, let me say that there are many, many rip-off artists out there providing "therapies" that are complete bunk, preying on the desperation of parents like you. Plus, vision therapy has absolutely no empirical research base to support its use. That said, as a researcher who studies interventions for students with learning disabilities, I can admit that we don't have all the answers yet, and we probably never will. Sometimes, a treatment that absolutely should work doesn't, and another that has no reasonable explanation for working works. Kids are too different, and the number of issues they present is far greater than the number of labels we have.

So, as long as you go into any search for answers with your eyes wide open and on the lookout for the crooks and crackpots, you should be fine. I truly believe that any treatment that has a loyal following of parents who swear by it probably does actually work for some kids. Just because we haven't adequately defined the population for which it is effective so that we can conduct controlled studies doesn't automatically mean that the treatment is garbage.

    Bookmark   April 25, 2008 at 11:21PM
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I forgot to say that most competent OTs can work on visual-spatial processing and sensory issues. I wonder why yours said these issues didn't apply??

    Bookmark   April 25, 2008 at 11:24PM
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seeking, I just found this thread and wanted to ask what the OT is working on with you for the sensory issues? Jesse has sensory issues as well and it's amazing what they "do" to him when he's overwhelmed. Normally they're mild, and hadn't been a big concern for us until our two month hospital stay. He was so stressed in the hospital and so pushed in the sensory area (his issues revolve around food and social circumstances mainly) that he started the hand flapping and then worse...started banging his head against the wall to calm himself down.

I spoke with a great Sensory OT out of Denver (she's written many books on the subject) about Jesse and she said that these kids have to find their release somehow. For Jesse it's the ugly head banging, and we couldn't let that go on. We got him into specific therapy for the sensory issues right away when we got home and that stopped. For other kids, their mood can be effected significantly...making them "crazy" angry, mean, etc., as a way to sort of let out the overload. The therapist will help evaluate this if they do a full SID test on her. I'd try to get one done. It might make a world of differnce for the little darling :)

Jesse no longer head bangs and we are careful to work with him on his issues. We go to weekly therapy specifically for the sensory issues so that when he's in school...hopefully our work will have paid off and he'll find other ways to deal with his stresses.

SID is a vast and bewildering issue. What is a problem for my son, might be fine for your daughter. Some of these kids have such issues that just dressing them is a nightmare...socks hurt, shoes squeeze, etc. Their little world is so difficult and they can't express it to you because they can't understand you don't see it that way.

Anyhoo, I just thought I'd share the testing idea...it might matter more than it seems. And definately see an OT who is a specialist in Sensory Processing Disorders verses just a regular old OT.

    Bookmark   April 28, 2008 at 12:48PM
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Oh wow - DSI also. Boy Igloo - You're on the crazy train with your little guy...

My John had major sensory issues, but fortunately for us, there were of the hypo-sensitive variety rather than the hyper variety. He didn't mind poopy diapers, skunk smell, tobasco sauce, getting shots, extreme heat, cold? little cuts & burns? -- You name it, he didn't really care...

I'd strongly second the recommendation for an OT who specializes in sensory issues. It really can make a big difference --

Any news on a diagnosis Igloo? Or on how long it might take to get one if they think they're still on the right track? I know how frustrating the endless indefinite wait can be...

    Bookmark   April 28, 2008 at 9:32PM
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Hmmmm...I was under the impression, based on the information given by the OT we went to, that she specialized in SID. However, that may be more self-proclaimed than actual. She gave me some little brochures but basically said that she did not offer therapy for someone like Alex. I thought that was her specialty (SID) but who knows. My dh did not really care for her that much though we both thought that her explanations as to what is probably going on with Alex were very valid and her suggestions have been helpful for the lesser problems.

igloo, I'm sorry to hear about your son's sensory issues. It seems that these children rarely have just one difficulty, doesn't it? I think your suggestion is excellent about finding an OT who specializes in sensory issues (besides the one we already saw). I wonder if Alex's anger is her SID release? Whatever it is, we need something more powerful to combat it than the little helpful suggestions from the OT. It has always seemed a no-brainer to us that we need to redirect her anger into other channels, but how to do that is the question we've not had any luck in answering yet. I truly do think that sensory OT intervention would work well for her. Do you have any idea how to locate a good sensory OT?

Also, do the following things sound like sensory issues?
*Alex often complains of feeling itchy. She says there are ants crawling on her.
*She sometimes complains that there is a strange taste/texture in her mouth. She tries to spit it out, wash it away, or mask it with something to eat

Sweeby, how are things going for John? Is he adjusting well to the math?

dirt_yfingernails, how is your DGS doing? I am sorry I didn't post to you earlier. I do hope that overall things continue to improve for him and you.

This is our worst time of year for Alex's problems. There is so much going on both at school and in her activities; we're nearing the end of the school year and thus the routine is going to drastically change and so will her teacher & classmates; she is the lead in her class musical; etc etc. We are seeing some really awful meltdowns, tantrums, and behavior right now.

Which brings me to my final question: for those of you who have dealt with rage/anger episodes, how did you cope with siblings? My 5-year-olds now mimic some of the behaviors and I'm not sure how to handle it.

    Bookmark   April 29, 2008 at 4:29PM
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Seeking -- On the itchy feeling and strange taste in the mouth -- sorry, but those sound more medical to me. DSI (SID is also Sudden Infant Death, so the sensory folks are switching to DSI) would be more like "My hair hurts" or "This shirt is too scratchy." Or the rage meltdowns she is having. Does she have a neurologist? Or how diligent is her pediatrician about the little things? Not to be alarmist, but I'd follow up on those others.

On the math, John is actually doing really well. Don't know if you saw that his school is now (post-test) giving him more appropriate material, and John is THRILLED with it! He's completing his assignments independently (a first, sadly) and is so proud of himself.

Wish I had some advice for the siblings issue. John's brother is 5 years older, so he can very reasonably be held to a higher standard. He's also very aware of his brother's difficulties and very understanding.

By the way, Alex's performance was fabulous! She looked and sounded fantastic! (Who would know she had issues?)

    Bookmark   April 29, 2008 at 8:02PM
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sweeby, I am so glad to hear that John is doing well with his math. I had read about the school giving him the "missing pieces" and had hoped that it was working out.

I have not had much success with my pediatrician as far as seeking answers for Alex's difficulties. I have repeatedly asked about having her see a neurologist, but no one seems to think that is advisable (except members of this forum). I even asked *my* neurologist but he was too busy to even let me complete my question. Should she have some sort of testing, as in MRI or CAT scan or EEG or anything?

We know that bipolar disorder is a possibility, but most of the specialists have told us that she doesn't seem to fit that, either. Too bad you can't just do a blood test to figure these things out, huh?!

Alex loved being in the talent show. We didn't have to do too much for the costume--she had a red skirt and navy tights. We did find some sparkly red shoes at WalMart and Grandma bought her a sequined jacket which fit right in. I made the crown from a Dollar Tree "Bride" tiara. I glued some red and blue jewels over the word Bride and glued on some red, white, and blue tinsel stuff (cut off of a Dollar Tree bouquet).

My mom thought I should write "My parents are liberals" in big letters on her bloomers so it would show when she took her bow at the end, *snicker*.

    Bookmark   April 29, 2008 at 10:41PM
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seeking, I just happened to drop by and I watched that video and WOW! Alex was 100% on pitch the whole time, even in the higher reaches! -- I could tell she knew what she was reaching for even when it exceeded her grasp, and when it got lower in the second verse, she nailed it completely. Really stunning pitch there for such a young person. At first I thought it was a lip-synch because her pitch was so dead-on.

I love what the bloomers message would have been :)

    Bookmark   May 4, 2008 at 9:23PM
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Thanks, Superfly (hee hee)! She does seem to be able to sing pretty well. She was very nervous and didn't hit it quite as well as at home, but at the evening performance she really did nail it. I only have that one poor-quality video from the day performance, but I like that all the kids cheered for her :) I would love to get her involved in a music program. I backed off on a lot of activities this past year (she used to be in a music program) because of her anxiety. I thought maybe fewer activities would help, but it actually appears that the opposite is true. She enjoys being busy and I think it takes her mind off other things.

BTW, Alex's little sisters were entranced with the whole talent show thing. The three girls immediately began to plan for a sisters act next year, LOL. The twins will be in kindergarten then. They told dh and me what their act was going to be and we could barely contain ourselves. They plan to sing "Lake of Fire." In case you are unfamiliar with it, it's off the Nirvana Unplugged CD and the opening words are, "Where do bad folks go when they die? They don't go to heaven where the angels fly. Go to a lake of fire and fry...see 'em again til the Fourth of July." Quite a departure from America the Beautiful :) Needless to say, we will quietly steer them in a different direction before next year's show.

    Bookmark   May 6, 2008 at 5:00PM
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Hi all, I just checked in for the first time in months. Things have been very trying here as well and I have thrown myself into my gardening as a coping mechanism, so I've been over in the gardening forums. Gardening is so much more straightforward than parenting. :-)

Ivette, good to see you as well! I hope you and your family are enjoying your beautiful "new" (what is it, 2 years now?) home.

Seeking, so glad to hear the school system is coming through for you. You seem to be sorting through this as well as anyone can. We've hit a rough patch here now that the teens are upon us. Behaviorally, DS is fine, but he has some serious depression and anxiety issues heightened by the typical early teen proclivity for drama. I am on constant alert and feel like I am having to maintain a therapeutic environment at home all the time, which is exhausting, as many of you know. He's such a good kid with a big heart, but so lacking in self confidence. It's really quite sad.

Anyway, I didn't intend my post to be a downer, which is why I've stopped posting! Just wanted to let you know I was thinking of you all. Take care!

    Bookmark   May 6, 2008 at 9:24PM
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Gosh, Paige, please don't stop posting because you're afraid of being a downer! It goes with the territory sometimes, or we probably wouldn't be posting about this stuff at all. I'm sorry to hear that things have been tough for you--I can sure relate to this I am on constant alert and feel like I am having to maintain a therapeutic environment at home all the time. Unfortunately, I do not appear to be very good at that, sigh. In spite of all my best intentions and resolutions not to, I often end up snapping and then I yell and threaten. Sometimes I just run out of oomph and I can't handle things any longer. I can imagine how it must hurt to see the pain your DS is going through.

The counselor called and she now had an opening for us! She wanted to meet with dh and me first, so we had our initial session yesterday. I liked her but I have this fear that it won't help and we'll be spending a lot of money for nothing. I know that's pessimistic and cynical but I can't help it--after all these years, this will be the first person to actually see Alex for therapy and I've gotten into the mindset that we're never going to get anywhere. It also isn't covered by our insurance, and $90/week plus childcare for little sisters (another $15) is a big chunk for us. How did you guys deal with the money issue? It seems most of these therapies and tests aren't covered, and we have excellent insurance. I'm not even sure how much we've spent this last year, but it's big.

    Bookmark   May 7, 2008 at 12:41PM
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Well, so far the counselor has not helped. We've been 3 times, the first with just dh and me and the last two with Alex and me. The counselor wants me present, but honestly I feel it might be better if Alex had the chance to speak without me around. Anyway, we've just gotten some suggestions that seem kind of weak ("imagine your anger is going into a balloon and it gets bigger and bigger and then you let it go"). I mean, those are great tools but somehow I was expecting more. The counselor asked yesterday if I wanted to continue, which surprised me because I've not indicated any discontent but I think she realizes that there isn't much happening. During the sessions, Alex is squirmy but listens, answers, and appears fine. Then the minute we get out of the parking lot, she explodes. Maybe if she'd explode in front of someone, especially a counselor, it might help.

The counselor asks me questions during the session that kind of put me on the spot because I'm not sure what she's trying to get. For instance, she asks things like, "Is Alex good at abstract thinking?" and I don't quite know how to answer. "Does she have a good imagination?" is another. There's no yes or no answer to those questions but obviously it's a lead-in for something she wants Alex to think about, say, or do. The counselor, at this third session yesterday, said that she thinks this is not psychological but neurological/physiological in nature. I am sure of that, but what to do? She began mentioning tools that Alex could use like the balloon and building an anger box by poking a paper towel tube down into a shoe box and putting crumpled paper inside. Alex is supposed to blow her angries into the box and the paper will absorb them. I had just finished telling her that we've had a number of imagery exercises in our arsenal but that they were no longer very effective with Alex (I think she's sort of outgrowing that kind of thing). I was disappointed that the best we've gotten so far is suggestions for what she can do after the fact (which is, as I've told the counselor repeatedly, almost futile) rather than ways to prevent the build-up in the first place. I had hoped we'd be working with the school psychologist on mitigating the anxiety and consequent anger while it is building. That was the plan, outlined at her IEP.

I can't see spending $100/week for stuff we've been doing better ourselves. I'm very disappointed in this as it looks to me like we will need to look in another direction for assistance and we waited so long to get this counselor. The suggestions from the OT were much more helpful and she only charges $60/hr, LOL.

Question: can we get assistance with any of this (financially) since we have an IEP? It's getting pretty brutal, trying to pay for all of this assessment, counseling, etc.

    Bookmark   May 21, 2008 at 12:44PM
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I guess we've been 'lucky' (odd use of the word) that our son acts out in school more than at home! So the school has brought in counselors to work with him there on their dime, and it's been very effective. (At home, we don't have the types of situations that have triggered the behaviors, so we don't really have the same issues - though we do talk to DS about his behavior at school.)

Anyway -- Alex clearly has a pretty decent capacity to hold herself together until it is 'safe' to let go, so she's letting go at home after school and in the parking lot after counseling. And your counselor and schools are seeing the same things we see at home withour son -- nothing. Which leaves them in a pretty weak position to help -- even if they believe you 100%, which sadly, they may not...

I hate to be a downer about this, but IMO, until the school sees Alex having meltdowns at school, they are far more likely to blame any 'behavior problems' she has at home on 'poor parenting' or an 'inappropriate home environment' or perhaps 'insufficient structure and supervison' at home -- anything else that isn't their fault. And while I'm confident that isn't the case, it's a hard case to prove to a school that doesn't want to believe it and has every incentive to simply say "not my problem..."

I know it's not completely honest, but what about buying a pocket digital recorder - they're tiny and cheap - and taping some of Alex's meltdowns to share with her counselor. Even though this counselor hasn't been very effective yet, she hasn't had much to go on, and it's possible that she may learn something from the tape that she's not been able to see before? Also, you said she said it seemed "neurological rather than psychological" -- true. But does that mean she isn't the right person to help? I'd ask her that.

You mentioned also that you thought it might be better if you weren't in the room with Alex. Why do you think that? Do you think Alex is maybe 'hiding her flaws' from you? And that she would open up if you weren't there? How capable is Alex of verbalizing her feelings? And how willing?

    Bookmark   May 22, 2008 at 10:40AM
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Hi all, just checking in quickly. Seeking, I have to say that counseling just really didn't work to change DS's behaviors when he was young. Now that he is older, we are in cognitive behavioral therapy, and that is SLOOOOWLY working. DS's psychiatrist told me that he thinks most counseling is ineffective in kinds under 10, unless it is to address a traumatic event. (I know, I know, our kids have traumatic events every day, but I'm talking about a death in the family or abuse or something like that.) Young kids just have a hard time with behavioral therapy, and it is up to us as parents to try to create as therapeutic an environment as possible to get them through these years. This is not an easy thing, I know.

I will say that as DS has gotten older, his behaviors have improved insofar as he does not lash out the way he used to. He is more aware that he can't act in a violent manner without serious consequences due to his age and size. Now his behaviors are more internal - - things he does to himself, like not eating or picking at himself.

If Alex gets to the point where her temper is likely to cause her to hurt herself or others, which I know is beyond her control at this point, I think the thing to do is to talk to a psychiatrist about medications that address these outbursts. I know this is controversial, but basically, if there is nothing else you can do to control it, the choice is to live with it or medicate it. Living with it presents a whole list of problems, including the impact on siblings (I grew up with an unmedicated brother who had challenges that caused him to be violent and it scarred me for life), the impact on Alex (feelings of guilt and inadequacy because of her behavior that will become internalized and impact her self esteem) and the impact on you. The downside to medication is that we can't be 100% sure what the long term effects are. Also, there can be a trial and error period of figuring out what works.

Honestly, I wish there was a way to decide how to proceed in these situations. I don't believe people who are judgmental about these things have any idea the struggles we go through. There is no control group in these situations, so it is impossible to tell what might have happened if we had taken a different route. My approach, after much consideration, has been to do what needs to be done to make everyday life better now, in hopes that if life is better now DS can build upon that and prepare for his future, rather than facing tremendous stress and struggle on a daily basis.

OK, sorry if that is a bit rant-like, I'm in a hurry and I'm also feeling a bit melancholy about all of this right now!

In other, more positive news, I started dating this year, for the first time since DS was a baby. I'm in this place now where I realize that I cannot give up my entire life and any prospect of happiness to be a martyr to my child. He is going to have to figure out how to make it out there in the world eventually, and I need to have more positivity in my life in the meantime. It's not easy to find someone I find interesting and who can live with my situation, but at least I'm out there, right? I have a first date tonight with a guy from work (same building, different department) who I've been having lunch with regularly - - we're going to see a band I really like. Wish me luck!

Off to get ready for work now - - will try to check in soon.

    Bookmark   June 6, 2008 at 7:57AM
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Paige, I agree that medication is so often the only option, but even that is full of difficulties, trying to find the RIGHT medication is so difficult. You try one and it works (for about 3 weeks), so you try another and it has no effect, you try the next one and it not only doesn't help, but it makes things worse.. it's a horrible roller coaster!

My little guy, Stevie, is 11 and has severe autism, he is completely non-verbal and has very bad self injurious behaviors. When he gets upset, he bites himself and pulls chunks of skin off his hands and arms. For the last year we've been struggling to find anything that works to help him without much success. Right now, he wears full time huge padded hand/arm covers that I made myself because I can't find any protective ready made equipment for him.

I wish they had a nice little chart of behavioral issues that said "your child has x behavior, give y medicine and all will be well"... a mom can dream, right? ;)


PS good luck on your date, I can't imagine doing this on my own, you are a strong woman!

    Bookmark   June 6, 2008 at 1:28PM
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paige, thanks SO much for giving me the perspective on counseling. Alex has been to see the counselor 6 times or so now, and frankly has gotten less out of it than from the lady who comes to see her at school. Now, I have to confess that it takes her several visits with anyone before she "opens up" with them, but I really don't think the counselor has anything to offer to aid with the meltdown issues. I was wrong earlier when I thought that it would take very little to help Alex. It takes very little to give her some venting and stress relief, but I see that we will probably be dealing with the meltdowns for a while. They are slowly evolving as she grows and matures. We've gotten a lot better help from the internet, intuition, other parents, and so on than from the counselor. I'm not saying she isn't a good counselor, but I don't think her type of specialty has much to offer a child like Alex. Perhaps a psychologist or someone trained to work with kids with special needs would be better. We thought we were getting someone like that since she came so highly recommended from the psych that tested Alex for autism and a couple of other trusted people we know. However, she has admitted to us that she isn't sure she is the person we need. Sigh.

BUT...WOW!!!! Dating! That's huge!!! I'm so happy for you. It really is a big step and a very important one, too. I think you are absolutely right; it is smart to make your own life as complete as possible and ultimately, I believe that this is best for your child as well.

Oh Veronica, you poor thing!! I feel guilty for my complaints when I think of what you're dealing with. I hope that there will be something to help you with Stevie's self injurious behavior! How very heart-breaking that must be. I know how sad I feel when Alex hits herself in the head or pinches herself and can't imagine how it must be in your shoes. Hugs!!

    Bookmark   June 7, 2008 at 3:17PM
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I'm sorry, sweeby, I thought I'd answered your post. Guess it was just in my head!

The school has actually come around quite a lot. The lady who has been seeing Alex once a week at school has developed a huge fondness for her and they now email and write, too. She told Alex to email her anytime she feels she needs her and she'll come. The school psychologist will be working with Alex next year (starting in August) and the plan was to coordinate something with the private counselor and the psych. However, the counselor doesn't seem to offer us much in the way of suggestions for that and I feel sort of...well, like I did with our remodel--I end up doing the groundwork that I'm paying others to do (others who are supposed to know how to do such things). Sure, I know Alex much better and am therefore in a position to see what might be effective and what might not. Still, I don't like the feeling that this is all uncharted territory and we have to feel our way blindly. I *know* there is much commonality that can be tapped.

Anyway, it was suggested by Alex's case manager (the one who comes to her class once a week) that I contact a certain person who is a psych himself, has much background with special needs kids and who is also the current head of special ed. She felt that he might be able to guide us on the counseling issue and she told me to discuss with him the financial side of it.

As far as why I would prefer that I not be in every counseling session, or at least for the whole thing, there are several reasons. First, I end up trying very hard not to be Alex's spokesperson. She looks at me, as does the counselor, for confirmation whenever she says something. She looks to me to explain things, though I try to make her do as much herself as she can. The counselor uses me to make points to Alex and I often don't understand what it is she's working me to say. It makes me uncomfortable. I feel that Alex needs someone she can completely open up with, and when I'm in the room, that just won't happen because she is so concerned with rules and what I will think and so on that I doubt she can be totally candid. What if she were having a problem with something I'd said or done? She'd never talk about that in front of me.

Finally, Alex simply does not appear able to verbalize what is really wrong. She can tell you what things bothered her that day but the bigger picture is not something she understands. She listens to the counselor and, later on in the session, carefully rephrases or repeats things the counselor has suggested. In other words, she constructs a script to fit what the counselor wants to hear out of the very things the counselor has mentioned, but in a clever way that makes it sound like her own ideas. Do you know what I mean? So it looks like she has a good grasp on her emotions but the reality is she still has no idea why she has so much rage at the end of the day. Now that I've written this down, I see that I don't really think that approach (examining the Why) is meaningful or productive at this point. What we really need to do is reduce the stressors that cause the build-up, but the counselor has not been helpful in that regard. That is why I think it would be better to work through the school.

    Bookmark   June 7, 2008 at 3:47PM
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OK, way off topic for this thread I know, but I thought I'd throw out an update since I told you I was going on a date! Also, it lightens the mood a bit. Thanks for the well wishes, btw.

We went to see a really great live band at a nightclub I haven't been to since my son was born. I had the BEST time listening to music I love and dancing until 2 am (the band played for 4 1/2 hours!). I'm not at all sure about long term prospects with this guy, but he is a lot of fun and very active/outdoorsy, which is how I used to be in my former life. :-) We had a great time, and I think I'm going to have a fun summer, if nothing else. And honestly, that is exactly what I need right now.

For a couple of months this past winter I dated a professor who has a child from his previous marriage who is with him 50% of the time. He is very serious and smart, and interesting in an intellectual kind of way, but honestly it felt like more work than fun being in that relationship and I've decided that what I really need right now is a bit of an escape from my everyday life, not someone else's everyday life compounding my own problems. Selfish and immature, perhaps, but that's where I am right now. Maybe it's a mid-life crisis!

Seeking, I honestly think that counseling for you might be more beneficial than counseling for Alex right now. Getting the help and support you need to keep your home environment the way Alex needs it to be is very important - - none of us are superheroes, and we need all the help we can get. Having someone experienced to bounce things off of when you are at a loss for what to do is invaluable.

Veronica, my heart goes out to you as well. Have you read "Girls of a Tender Age" by Mary-Ann Tirone Smith? It's actually a true story crime novel/memoir combined, but the author talks a lot about being raised with an autistic brother (whom she loved dearly). He also bit and chewed on his wrists, much like your Stevie. It's a sad story all around, but you might get something out of reading it.

    Bookmark   June 8, 2008 at 10:04AM
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I'm glad you posted about your date, it sounds so fun! I know exactly what you mean about wanting a fun outlet. DH and I spent Saturday morning in a Harley store checking out motorcycles and I think we might actually buy one (although they didn't have the model we want, so we have to wait till end of July for the new model year to come out). We do live in Alaska, so it won't fulfill the "fun things to do" in winter, but for a summer of carefree "get us the !$#@ out of the house" I think it'll fit the bill nicely.

Seeking, did you ever get Alex evaluated by an OT specializing in sensory integration? I'm wondering if working with some weight or pressure might help. I know with Stevie the addition of weight and pressure makes a HUGE difference in his ability to cope. If her symptoms have some physical cause behind them, all the counseling in the world won't help.

Thanks for the book recommendation Paige, I'll look into that one for sure. My older kids are such a great help with Stevie and (mostly) love him very much, haha.


    Bookmark   June 9, 2008 at 12:10PM
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roni, I did take Alex to an OT who specializes in sensory integration, but her response was puzzling. She had lots of great ideas, strategies, and explanations for what is happening to Alex, but she did not recommend seeing her for therapy because her motor skills were fine (?). I was so disappointed, because Alex loved going there and I think she had the most to offer us. She had lots of neat exercises and equipment for it as well as ideas for releasing stress. I need to go back and reread her report, as I can't exactly remember how she explained her reason of not taking Alex as a patient. She highly recommended having Alex tested for auditory processing, which we did today. Alex crashed after about an hour and a half, which the audiologist said was super for her age even though we have another half hour or so to finish up. She found some very interesting things, she said--areas of "brilliance" and areas of real struggle, things that affect her comprehension. Beginning next week, the audiologist, our counselor, and a child psychologist are going to be sharing a building (all their offices together with a shared reception area) and working as a team for situations like ours. When our counselor told us she was going to moving into the building, I hadn't realized what she meant!

We got to see the picture they took of Alex the first time she went in for audiology when she was only 3, which was fun.

We go back to finish up the testing on July 1, so we won't know any details until then.

Anyway, I am now thinking the OT may have told us to first get the auditory processing testing done as she very much felt there was an issue there. Maybe she could join our "team"! Her office is right next door! But I do remember her telling us she couldn't really do much for Alex since her eye/hand and coordination difficulties do not stem from a motor skills problem. I don't understand what that means. If you have problems, why does it matter whether they are the result of a processing disorder or a motor skills (physical as opposed to neurological?) problem. I would think an OT would deal with both, particularly one who specializes in sensory integration therapy.

I really appreciate what you wrote here: If her symptoms have some physical cause behind them, all the counseling in the world won't help. I think you're right on target! After today, though, I am hoping it might be a good component in a multi-faceted approach. Sheesh, that sounded hoity-toity! I mean, I like the idea of counseling much better when it's paired with the other specialties and the therapy is shared.

Paige, how wonderful to have a fun summer ahead!! I'm very glad for you. After my first marriage broke up, I had a very great fear of men and swore I would never let anyone get close. I didn't, and although I can't be too sad since I got my wonderful dh by waiting (15 years), I still spent all the years of my older children's upbringing alone. In retrospect, I don't think it was very healthy for them as neither seems to be able to form close relationships with the opposite sex. I'm afraid my suspicion and fear is a legacy I've left them, sigh. They are 26 and 28 now so I guess there is still plenty of time, since it took me half my life :)

    Bookmark   June 11, 2008 at 3:21AM
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A multi-disciplinary approach to Alex's care sounds spot on. Those of us with "complicated" kids can't just do the one specialty thing and get it all covered. Speaking of which, Stevie's pediatrician is sending us for a huge eval to Children's Hospital in Seattle. Hopefully we can get seen by a bunch of specialist as well as get a whole bunch of testing done all at once-she said we'll probably do an MRI and EEG as well as eye exam, hearing exam, bloodwork and urine test all in one session of general anesthesia. I'm hoping insurance will cover at least part of our air fare and that the Ronald McDonald house there has room for us.. they should, we'll have a good amount of notice. Even if none of that comes through, we're still going and we'll worry about paying for it later, LOL.


Oh, and about the physical/neuro difference you were talking about for OT. We were once denied OT for Stevie in his school because "his small motor development was consistent with his cognitive development"... of course, his cognitive development was 90% delayed, ugh. Sometimes these specialists drive me nuts, LOL.

    Bookmark   June 13, 2008 at 12:16PM
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"His small motor development was consistent with his cognitive development" OOOOOOOh, yes, you're right--that's what she said. And I totally agree with you about how nutso it can make you!!

Wow, good luck with the evaluation in Seattle! Is it a long way from you? It sounds like they're really planning to cover a lot of territory with the testing.

Alex has been barely hanging on these past few days. We have a huge fire here (20,000+ acres and only 10% contained). We watched the flames race across the fields on the other side of the street from us. We were packed and ready to evacuate but the fire took a turn up the canyon and spread quickly up into the hills. The town above us is almost completely shut off and all of the lower portion has been evacuated. Dh helped the firemen and stayed up all night to make sure the fire didn't turn back our way, then the next day (yesterday) he had to go out to his dad's to help there. His dad has 80 acres and most of them burned up, but the fire jumped over the house and headed on its way. Dh had his dad and stepmom leave and he stayed and once again helped the firemen, then stayed the night there to make sure everything was ok. Our road is completely closed now so if we leave, we can't get back in. It's a strain on anyone, but for a kid like Alex it's nearly unbearable.

    Bookmark   June 13, 2008 at 3:30PM
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Yes, they are planning to cover a lot, but that's because of the distance. We are in the middle of Alaska, so it'll be about 6 hours on a plane to get there. The last time we took Stevie on a plane, he was SO good, so hopefully we'll luck out like that again (but unlike last time, this time I have a back up sedative that I'll have for an emergency).

OMG. how stressful for all of you and poor Alex, change is so hard for these guys, then add in stressed out adults and you're heading for a real melt down. I hope things settle down for ya'll soon and fires die down. Stay safe!

    Bookmark   June 13, 2008 at 4:31PM
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I thought some of you other 'Extra Credit Parents' might get a kick out of this --
Last night I asked my 12 year old son (autism spectrum) to describe himself - not really sure why - and these are the words he used:

- Happy
- Fun
- Peppy (wonder where he got that? but totally accurate!)
- Nice
- Handsome

Talk about a kid with a healthy self-image!
I told him he was exactly right, but that he left off a few very important ones: Hardworking, affectionate and honest.

It just made me feel really great that the first word he used to describe himself was 'Happy' -- Hope it lasts!

    Bookmark   July 18, 2008 at 2:31PM
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Here's another funny story I thought you all might enjoy --

Older DS just returned from a visit with his paternal grandparents, who are 1st generation Chinese American. They've generously offered to take DS to China next year, and he's predictably thrilled. So thrilled in fact, that he installed Rosetta Stone language-learning software on his computer and is attempting to learn Mandarin.

So last night DS and I were clustered around his laptop trying to say rudimentary phrases in Mandarin and being 'graded' by the software. My grades were dismal! (which surprised me because I'm generally adept with foreign languages) Older DS's performance was really spotty, with some laughable results and some really good ones.

Then younger DS wanted to join in and try it. It is important to note that DS#2 is a kid with pretty severe speech issues (childhood apraxia). He needed seven years of intensive individual speech therapy to get to the point where he can be generally understood in English. But since there were plenty of awful results and lots of laughs to go around, we let him try it too. And what do you know? He consistently got great scores! So apparently, there's something inherent in his speech patterns that 'works' for Mandarin.

Anyway, we all had a fun, fun time and both DS's were thrilled with how well #2 was able to perform.

    Bookmark   August 21, 2008 at 10:27AM
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Sweeby, those are great stories! I wish I had some good stories from my DS, but it has been a tough summer for him. He is very jealous of my new relationship, his OCD has kicked into high gear, he's having frequent migraines, and he seems generally pretty miserable. Part of that is just being 13, another part of it is his own seeming determination to remain miserable despite being given all of the tools to climb out of it. He refuses to work with his counselor on the cognitive behavioral therapy necessary to overcome the OCD, he refuses to be consistent with his school work, and he refuses to lighten up and be civil to a guy who has done nothing to merit being treated any other way.

I have had a lot of fun this summer without DS, but it leaves me feeling guilty about leaving him at home or with friends or family. He is invited to come along to most of our activities (biking, hiking, kayaking, etc.) but he refuses. He also refuses to do anything with me on our own. He seems to just want me to stay home so that we can both be bored and miserable together (this was going on before I started dating, btw). But if he is determined to live a miserable life, he's going to have to do it on his own - - I'm not going down with him. Does that sound terrible?

I've been doing this alone for 13 years and I kept thinking that if I worked harder and got him every possible resource, things would improve. I did work harder, got him into a great private school, got him the best pharmaceutical help, the best therapy, etc., and while it has kept him from being hospitalized, it has certainly not led to real happiness or fulfillment. At this point, he has all the tools, he just has to decide whether to use them. I can't do that for him.

Sorry, I know this sounds depressing. Any words of wisdom are welcome.

    Bookmark   August 27, 2008 at 7:45AM
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Hi Paige -- Sorry to hear about your DS's rough patch. Adolescence is absolutely dreadful for most of us... Even John is getting 'testy' now, and he has the sweetest disposition of any child I've ever met. (I know how lucky I am!)

"Part of that is just being 13, another part of it is his own seeming determination to remain miserable despite being given all of the tools to climb out of it. "

You're absolutely right. As illogical as it seems, there are some kids who are just like this! Born that way. It's just part of their natures. I was one of them, and my older DS was one of them. If you were not (Hubby wasn't), it's very hard to understand. For whatever it's worth, if your son is like that, for some reason, he just needs to feel miserable right now, and anything you do to try and make him happy (a.k.a. "spoil his misery") will just annoy him and cause him to lose respect for you (because he knows you're kissing his --- and that he's acting like a ----). This may be part of his way of separating from you as a child, but he still really needs you to act like a parent.

For a neuro-typical kid, I'd just recommend giving him lots of space, allowing him to act nasty up to a certain point -- but strictly and consistently enforcing that limit so he knows he has one. And then during the quiet peaceful intervals, just tell him that you know he's going through a rough patch but that it IS temporary, and that you'll love him always, no matter what. I guess you'd have to adapt somewhat since your DS isn't so typical -- but you've been doing that successfully for years, and I'm confident you'll find a way to do it now.

What helped older DS and me sometimes was to watch movies or TV together, and whenever I'd see an awkward adolescent, just point out to DS that that kid in the movie was sure going through an awkward stage -- that his hands and feet were too big, bad skin, funny hair, squeeky voice or whatever -- and that adolescence just sucked! Thank goodness it was something everyone went through, that it only lasted a few years, and that life on 'the other side' was so much better! (Which is plastered all over TV)

"But if he is determined to live a miserable life, he's going to have to do it on his own - - I'm not going down with him. Does that sound terrible? "

No! It sounds smart and I agree completely!
Don't let him spoil your good times. Refuse to let him spoil your happiness -- because part of him wants to. (The nice part of him doesn't, and will understand and even approve of your life-improvement measures.) Continue to invite him -- maybe insist that he go once a month (on something short and relatively painless - his choice of event) -- just so he can see that BF is a nice guy and that happiness isn't fatal, even though it feels 'off' at this point in his life.

For what it's worth, I outgrew that ugly phase in my life and so did my older son (by 15 1/2 or 16) -- so odds are good that your son will too. Just keep hanging in there!

    Bookmark   August 28, 2008 at 12:22PM
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Sweeby, thank you for the kind and wise words. Yup, he does act like I am trying to "spoil his misery" - - the perfect phrase! Your own personal story is very helpful to me and gives me hope.

I am not letting him spoil my happiness, and I do understand his conflicted feelings about this. I have insisted that he come to the beach when we have gone, because I know this is an activity he enjoys. On those occasions, DS and my BF have had fun in the water together, although it is really more "parallel play", like toddlers, than interactive. Other than that, I have left it up to him on the other occasions I've invited him, but I don't let him control my return time despite his best efforts. He will say "I want you home by 9 so I'm not scared", but we both know very well he's perfectly happy being home until 11 without me when I'm at a friend's house instead of out on a date. So I tell him I will be home by 11, and that if he gets scared, he's welcome to call a neighbor (we have very close neighbors). When I know we will be out later, I arrange for him to have a sleepover somewhere.

I do think my BF is growing on DS, but he can't bring himself to admit it, so I don't even ask. I just tell him when he has done well being polite and (borderline) friendly.

To his tremendous credit, BF has done a great job of not taking things personally and offering assistance to DS when it was helpful. DS has arachnophobia (fear of spiders) big time, and BF turned around a meltdown over a big spider by turning it into a "spider hunt", with special protective gear, a tupperware container, and his quick tupperware-trapping reflexes. Before you knew it, we had the spider in a tupperware sitting on the desk while we googled it, then found a suitable new home around the block to release it. It was great fun, and I was very happy.

In other news, DS has decided he wants to try the local public high school next year. I think it's a recipe for disaster, but I also think I have to honor his request, after forcing him to attend this private school for 3 years. I just have to make sure I've researched some backup plans.

    Bookmark   September 10, 2008 at 5:30PM
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