Back in November we had our long awaited IEP meeting.
They’ve confirmed and called it Autism Spectrum Disorder, Pervasive Developmental Disorder – Not Otherwise Specified. In other words, they aren’t specifically labeling yet. They need more time to decide if it’s PDD-NOS or Aspergers (both of which she has indicators for).
Therapies are in place to help her.
Her testing has been altered to accommodate her needs.
Goals are set.
***
According to her teacher, outside of the initial very rough period of adjustment after her switch to full-day kindergarten she’s made leaps and bounds in her progress. Her fits are fewer, she’s more willing to sit for projects.
She still doesn’t play with the other kids, and they don’t play with her. She shadow-plays their play…and occasionally attempts interactions – but she is ‘different’ enough in how she tries to play that the other kids don’t really respond to it. That worries me.
But she LOVES school. LOVES learning. Is so excited to go every day. Counts down the days until she can go back when it’s the weekend.
All along I’ve been convinced that school was wrong for her.
Some days I still believe that.
But I can’t deny her excitement to learn, to be at school.
But then I see the signs that everything isn’t hunky dory.
Beyond behavioral issues – the inability for her to settle down when she gets home. The increased fighting w/ her siblings.
There’s the sudden aversion to eating. She’s so skinny, she can’t afford to not eat. She’s turning vegetarian, refusing any and all meat – which would be fine if I had the slightest clue how to feed a vegetarian (we are a MEAT loving family here). Beyond that, her lack of eating is resulting in thinning hair again. I rarely try to give her ‘pretty hair’ any longer because her hair is so thin, I just can’t style it.
And the bed wetting. I don’t blame her or yell at her. She apologizes every time. She just doesn’t know. She crashes SO hard after big overstimulating days that she sleeps right through her need to go. It’s not her fault, but I have enough laundry without this kind of event happening nightly.
***
I’m still worried.
My heart is torn.
There is no right.
Keep her in, how many more behaviors will emerge?
Take her out, break her heart and cause another meltdown triggered by a major change.
There is no right.
I’m incapable of helping her.
Of handling my own conflicted thoughts and heart and mind.
Lost.
So afraid of making another wrong turn.
Afraid that we’ve already screwed her over.
Afraid that we won’t be able to correct this.
Afraid that she’ll never ‘fit in’ and always feel that pain the way her daddy does.
I am so glad that she loves school, but I can feel your pain in this post. Parenting decisions are so hard, because we can’t fix, we can really only try to do our best, whatever that is.
@inthefastlane,
I know. And it’s knowing what IS best that’s the problem. So hard. I hate it.
Try Boca and Morningstar products, yo. It certainly can’t hurt.
@Burgh Baby,
You mentioned Morningstar products last week. When I do my grocery shopping for the week I’ll try to add a couple items in. If I can get her to try it, that may work.
I’m so sorry. These are such hard decisions to make. When you look at your daughter loving school, but know it’s affecting her behavior, how can there even be a right decision? If you want tips on feeding a vegetarian kid, I can try to give you some. My best friend’s family is vegetarian with 3 kids. I’m sorry you’re struggling with this, I wish I had better advice to offer.
The best decision we made was to let our teenage son leave high school and test for his GED. He had IEPs from about 2nd grade on, promises would be made and last maybe 2 weeks and then nothing.
I think his case was not typical, but you may have to stay on the teachers and school to keep their plans in place, and to maintain consistency.
Sara: I’m Veronica and my only child, Sergio, well he is an awsome teenager(13) and fist was diagnosed as PDNS, then Aspenger’s which I belive it’s a better fit and actually not far from PDNS. I understand what you are thruogh, and belive me It will always be like that. Along all these years, my boy has been an ‘a’ student, but had not found a friend. It’s just like you say, when they finally decide to interact with others, there aren’t anyone to play with them, so the withdraw. My boy had a major depression episode at 8, because he is in fact so smart, that being different was hard, really hard and he knew. All I can say is that there will be very good and very bad days, but mostly bad. I keep him at school, hoping that someday he can have a friend,aside the family. Anyway, the primodial reason I was writting to you, it’s because it’s the first time I see a link beteewn Russel Silver and autism. The father of my boy has Russel-Silver, while my boy is autistic, in my family, one of my cousin’s daugthers have cistic fibrosis, and it seems to me, since your kids have all the same rare diseases that a corelation of a genetic kind might be. What can you tell me about it?
Hi @veronica,
I wanted to let you know I did get your comment and have been thinking about it a lot. I don’t know that I have all the answers right now about some of your question (the tie-ins w/ CF, RSS and autism on a genetic level)…but that doesn’t mean I’m ignoring you.
In fact, in a couple of weeks I’ll be going to a genetics counselor and be able to at least in part examine some of those questions. I hope to do a blog post on that and see if I can’t help you out on some of that.
One thing I can tell you is that RSS and autism have some similar presenting problems – language delays, learning disabilities…and that since both my husband and my autistic daughter both seem to have both RSS and PDD-NOS, that I wonder the same thing.
Thank you for stopping by my blog…I hope you stay around and keep visiting as I keep looking into all of these things…as well as continuing with our every day.
Sarah