My daughter is slipping away, help, advice please

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It sounds like you are doing TONS of things right. That leads me to three questions:

1) how significant is the anxiety at school? Is she suffering tremendously? If so, all the work in the world you do at home won't help alleviate it. That means it's time to go over your Principal's head - first let her know that you will be doing that if you don't get the IEP you want. Give her a deadline for serious action. What level is over her head where you live? Here it's the School Division and Superintendent of Schools. Copy all correspondence to your local government reps and follow up with them.

2) when your daughter has anxiety, what's your reaction? Do you "indulge her" as some would say (I would say accommodate and reassure her) by allowing her what she needs to feel safe (bathroom door open, etc) or do you insist on "growing up" and attempt to force her to get used to uncomfortable situations on her own? I ask this because I know a lot of parents tend to go the latter direction and I personally feel this greatly increases a child's anxiety. My son had many of those same fears over the years and I "indulged" him every step of the way until gradually he became confident that he was safe to do things on his own. Many of those anxieties have now fallen away. Have you heard of CBT (cognitive behaviour therapy)? This can work wonders for anxiety.

3) if she is not really super-anxious about school, and she has tons of sensory accommodations at home, then I think you need to focus on finding a good doctor (or getting referred by your current doctor to a child psychiatrist) who can assess your daughter in case she does have any comorbid conditions.

You also need NEED to make a short list of things that will help YOU feel less overwhelmed. Hartley Steiner has a great blog focussing on sensory issues and she's featuring a once-a-month series all year called First Things First - all about caregivers looking after themselves FIRST in order to be the kind of parents our kids need. Check her series out at www.hartleysboys.com

The anxiety at school is extremely significant. She begs me each morning not to take her. She will double over with stomach aches saying she is too ill to go to school. She has extreme agitation at home after school. She will fixate and talk about and act out what happened during the school day. She will script things the teacher said during the day. She clings to me when I take her into the classroom in the morning. Her teacher has to physically pry her from me as I turn around and leave. I have extreme reservations about making her endure the anxiety that school provokes in her.

She has always been this way in every school setting she's been in. She started a preschool at age 3 and they said "oh she'll get used to it" but she never did. She has never once gone willingly. She has hated any group activity I have ever tried to get her to do. Even at age 2 in the public library for storytime she would never go near the other children. She clung to me and watched them. Whenever anyone would approach me and say hi when she was an infant (and she still does this now) she would turn away from the person. Even now at age 7, she will not shake someone's hand upon meeting, or look them in the eye, or acknowledge them. She might reply under her breath a hello if she's met them before.

She's able to connect with and bond to people when she can interact with them one on one (or them + me + her). I think she is able to bond with and trust her teachers but it is the presence of the other kids that creates the anxiety. She is very controlling, and is obviously unable to control a classroom of twenty 7 year old children.

I started out over the principal's head in the beginning of my fight. After failure with the higher ups (district people) I found the principal really wanted to help. She fancies herself "knowledgeable" about AS but told me once it couldn't be dx as young as my daughter. Therefore I think she coddled me for the first half of the year, until my daughter started having some real issues that were causing disruptions for the teacher (demanding a lot of attention) and absence from school. She started really trying to create interventions but they ignored my list of requests. I asked for earplugs in the gym. I asked for the pass for the counselor (they finally did this one). Her controlling teacher who did not want the district, nor any parent, nor any aide, nor the principal breathing down her neck tried to grandmotherly, tough love, dissuade my daughter from using the interventions. This caused more and more anxiety and stress. They did get her a one to one aide in special situations such as assembly or field trips but nothing the rest of the time. It got so bad by the end of the year I was just sending notes to school, angry notes, saying "XXXXXX is NOT to be taken to the gym again this year!" They did as I said but towards the end I saw my daughter's teacher "briefing" the next year teacher, no doubt about how difficult I am.

I don't know how to make them do more for her but perhaps that is the THING she needs that everyone is referring to. Perhaps all that fear and anxiety during school has just made her a nervous wreck.

On your #2 questions I do have to admit that I would discipline her for her behaviors up till a year ago (at her diagnosis). Up until that time I thought she could be conditioned. Then, with exhaustive testing and analysis by a health/science center neuro phychologist, I was able to see in hard data the extent of her strengths and weaknesses. They explained everything to me very bluntly. I knew then she had some real issues and that I was making it worse by my authoritative position. Now I am probably too lenient, letting her have the space to vent when she needs to. I ignore behavior and statements from her that would be difficult for anyone to turn a cheek to but that's what I've learned to do. I know she doesn't CHOOSE to be/act/feel this way. This is simply the way she is. Her experiences are far different-things can be amplified or muted with no rhyme or reason to the degree. She will whine and moan and carry on about a paper cut and then I've seen her really hurt herself with a large cut and bleeding down her leg and she doesn't realize it. She can become volatile in a moment's notice and go from laughing to screaming at you in minutes.

I am focused so much on the negatives here but there are the positives. When it is me and her in our home or a place she loves she is warm, witty, expressive, helpful, and smart. There are days that I think she's ok-that's it's all just a big mistake and she's coming out of it. She loves to sing, cook, garden and she's very very good at math. She has always been drawn to patterns and geometric shapes. She now writes numbers in geometric shapes and makes patterns with them. She can add six digit numbers. She understands the concept of multiplication.

BTW she has a diagnosis of AS and Developmental Coordination Disorder. The schools say a medical dx doesn't mean anything at school. The only dx that matters supposedly for my daughter, is an "educational dx". And as far as they can tell with her scoring so well, they think she's learning just fine.

I will check out the sensory blog. Thanks!

Wow, my heart breaks for your daughter. Are there any other schools in your area you could look into? That does not sound like a healthy place for her.

Have you considered homeschooling? Even just long enough to help her get her anxieties under control?

Thanks for posting so much detail. It's been incredibly helpful to me to me to read other people's personal experiences with AS.

In many ways your daughter sounds similar to mine. She scores very high on standardized achievement tests and therefore does not qualify for any special treatment from the school system. But while she's good at things that are difficult for many kids, she's also incredibly stressed out by things that come easily to "normal" kids. And for most of the past 4 years she begged not to go to school.

And my daughter is poor at articulating her feelings so it's often difficult to understand her actual school experience. So many times she told me:

"I don't want to go to school"

why

"because I hate school"

why

"because people are mean"

who is mean

"people"

And it goes on like this with extremely little revelation of any information about what actually happens at School. One thing that seems to be a recurring problem is that my daughter has troubling understanding any kind of criticism or negative feedback. If she gets a bad grade on an assignment then she decides that the teacher is "mean" and therefore the grade is beyond her control and maybe there's no point completing any future assignments in that class because the teacher will just grade them with that same "mean" attitude.

I found it very helpful to observe actual class sessions to see the manner and extent to which my daughter participated. Your posts show a high level of involvement in your daughter's education, sometimes there's no substitute for personal observation and the school may or may not have allowed that.

Ultimately, I found some individual teachers more helpful than others when it came to accommodating my daughter's AS. The great teachers seem to find a way to connect with each student. The weaker teachers need some guidance.

They have not allowed me to observe. They have said it would be "too disruptive" to the class. I have at times shown up a little early to pick her up and can observe then. But they are usually at the end of the day so I can't get a true feel of what may be going on.

They haven't allowed you to observe? They are hiding something.

You need to find a different school. Period.

So many great replies to your post, wow!
I would also stress the diet thing. My son is on GFCF diet, it really helps with the anxieties etc. If you haven't read Luke Jackson's " Freaks, Geeks, and Asperger Syndrome: A User Guide to Adolescence" I totally recommend it. He is a 13 year old with AS, he writes in detail about how the GFCF diet helped him and his family. It's also a very enjoyable read, highly recommended!
My son is now so sensitive to casein he will throw up when he eats it. Gluten is more difficult to notice, as it effects him like a narcotic. I also stress it took a year to get all the gluten out of his system and reap the full benefits. Also, my husband who had been diagnosed with IBS, found that the GF diet cured him!
Udi's Bakery makes gfcf bread and bagels which is just like the real stuff, my family loves it!
Good luck
PS schools suck!! I am with you on that one!! Learn more about IDEA and FAPE- your school district should be legally required to do more for your child!
If all else fails check out homeschool online options.
And be sure to encourage her to egage more in her "special interest" to build her self esteem. Self esteem is my sons most challenging (and I think the most important) thing. With that he can do anything, regardless of what others think!!
Children who are different should not be penalized for "not fitting the box". People who don't fit the box often go on to do great things, they just need teachers/mentors to help them realize that!

That's a good point about the special interests, mamatograce, what is your daughter's special interest?

She enjoys drawing. She will draw elaborate designs and painstakingly get them "just perfect". This may not be her "special interest" as in her obsession but it is definitely her enjoyable hobby that she is very good at. Her obsessions seem to peak and wane. Right now she is very into iCarly. She told me she can't go to sleep at night because she thinks of iCarly. She scripts the episodes and wants to watch the same one over and over. I think it's because it's somewhat slapstick and dramatized. Before that she was fixated on American Idol and had elaborate charts and lists of who was in who's favor from episode to episode. We had to limit that because she became very upset when people were voted off. I am unsure about letting her watch (crap) tv, it doesn't seem "good". One year ago she was outside exploring everything and now she wants to watch tv all the time. She also watches Food Network, especially Iron Chef and has memorized all the Chefs and knows their "stats". People do a double take when in casual conversation she wants to talk about Masaharu Morimoto.

So basically she is new to the "zoning out" on shows like iCarly. She likes shows with statistical value like competitions.

I let her engage in these things. the only one that bothers me is the iCarly (I feel it's useless data being fed into her brain) but perhaps she's learning the social stuff by watching it. I don't like all the words she's picked up like "Duh"