Tuesday, March 04, 2008

How to do right by your child

It has been a long while since I posted any updates on the IEP process (err, fiasco) for Christopher... Mostly that has been because, well, as has been shown in the past, the CST has been less than stellar at keeping on top of things.

Par for the course with this group, right? Or a majority of CST's as I have learned rather quickly.

Anyways, we had a HUGE pow-wow with the CST and other in-district "professionals" a few weeks ago (after waiting for revisions we requested), received a new IEP draft, asked for yet another revision since there are things we wanted specifically written in there (like, how often would the ABA-trained specialist actually be working one-on-one with Chris - kinda important to have in the official document, no?), waited, finally got a new draft last week...

...THEN get hounded for a decision the next day after receiving the document in snail-mail by the SAME CST that has dragged their feet from the start!

So, I played bad-cop - again....because, well, I have yet another cold (with a lovely, husky cough to boot) and I feel like crap. I told them WE will take the time to review the IEP, yet again since their track record for putting things in writing as we want them is not good, and will give them a start date for school when we are good and ready.

Right now, we have an un-official start date of March 11th - to include Tuesday/Thursday/Friday half days in-district and Mondays/Wednesdays half days in his current nursery school for two weeks to get him accustomed to the new school; Tuesday/Thursday/Friday full days in-district and Mondays/Wednesdays half days in his current nursery school for two weeks to get him accustomed to the full days; then total transition to the Monday-Friday week at the new school...with extended school year through July (half days only from mid-June through July with full services).

Meanwhile, we had a private eval done last week through the Lovaas Institute (waiting for the report to come back) because, quite frankly, we are just no longer sure Chris NEEDS a school program anymore.

Let me explain...
  1. Chris' speech therapists told us that he is now way above his age level for speech...and that they are giving him assignments that are for kids older than him because he likes the challenge. He masters everything he is given fast - and applies it. Well, I can see what they mean since Chris now has an "opinion" on everything, as well as a crass sense of humor. And, we wanted him to come up to his age level on speech?? What were we thinking?? It is all good - and we are very proud of him.
  2. He is completely potty trained now...well, kinda 50-50 at night, but I am not worried about that now. He can go out to the store and restaurants and elsewhere in big-boy underwear with no accidents. He tells us when he has to go. He tells his teachers when he has to go at school. The potty-fest of 2008 (aka, Martin Luther King, Jr. weekend where it was potty training, all day and all night) was well worth the large pile of peed underwear I washed. This was a MAJOR issue in the IEP - and, well, it is gone now.
  3. All of the O/T and P/T issues that were outlined in his evaluations in...well, October 2007!...are no longer issues now. He was "technically" only 3 months behind on certain things (some because of proximity, like using scissors... Back in my youth, scissors were not a skill acquired until kindergarten!)...and now he is writing letters and numbers. The O/T and P/T was added to load the IEP to get the services in the first place. So, it is no longer necessary.
  4. He is playing along with other kids in school, at gatherings, telling us stories of what went on at school (like him going to the potty), etc. Starting conversations with people he doesn't know, like waiters/waitresses at restaurants who are serving us.
  5. Everything - and I mean, everything including when I try to vacuum (which is NOT a bad thing!) - is "I can do it!", "I wanna do it!", "Let me try!". He is becoming very independent...which makes me sad in a small way, but glad too.
The only issue...and really, it depends upon his level of tiredness now...is the hand-flapping. His teacher at school mentioned he rarely does it now...and if he does, it's because of a very special snack or something very exciting going on that day. It's rare now - she used to correct him very often, now it is rather rare. For us, he hardly does it in the car anymore (one of his prime-spots for hand-flapping). The main time we see it is before bathtime, when he is at his most tired (not cranky-tired, just winding down after a busy day tired). But, even then, it is clear he is catching himself - and correcting it himself - which is what we want for him and an excellent sign of progress on his part.


Where does this leave us with a school program that we are just not thrilled with in the first place? I don't know. I have some major reservations about the in-district program (the only one that remotely fits his "needs"):
  1. We live in "the 'hood" in NJ - the area the school is in has had 2 shootings in the past year. Do I really want my MIL or myself driving Chris to an area like that? Sure, the school itself is secure - but, what happens when he steps outside?
  2. It is full day...from 9 am - 3 pm. Chris still naps from 1-3 pm. And, quite frankly, what is built into the schedule at that time just doesn't justify his being there...or any of the kids.
  3. ...And the district will not change it to include part-time.
  4. The amount of time an ABA trained therapist would be working with him would be 60 minutes a week one-on-one. Well, we can PAY for that on our own with a private therapist.
  5. I LOVE that Chris comes home with a sense of faith from a Lutheran nursery school...and it was our plan to send him to Catholic school (which Hubby picked up the application for today for Pre-K 4 for the fall - half days, 5 days a week!).
I want what is best for Chris in the long run...but, he does not fit at all into what his evaluations "showed" in the fall. He doesn't stand out from the crowd of kids.

His neurologist felt he would fall off "the spectrum" rather quickly as it was back in August (she is out on maternity leave now...which makes this decision even harder for us to make)...and it appears she is probably right. The impression we got from the evaluator last week is that she really didn't see much of a problem with Chris...

I am not sure what to do here... This is his future that we are making a decision on.


amy said...

Yeah, Chris! I'm so glad that he is doing so well. I say go with your instinct (which I've learned is always right). If you feel as if he should be in another school/program that what the SE department is stating then make it known that your decision is final. You want what is best for your son. Lord knows that I'm still bumping heads with Peter's school. I'm really considering pulling him out of that school. Sigh.

Best wishes!


Jessica said...

Also gald that he is doing so well!!! I am sure you will make the right decisions and like Amy said- go with your instincts... mommy knows best (most of us that is!)