Thursday, August 30, 2007

Our progress with getting Chris into the correct program

This road of PDD-NOS has been already a bumpy one - not necessarily for Chris, but for us trying to get him the help he needs now.

We obviously have the diagnosis - and now have the actual report from the doctor. It was actually quite positive overall, with one or two things we don't agree with (but, we are not fighting it either because really, it was what he did at the time in the "sterile" setting). She feels that, with the right program now, he may very well not need any services by age 5. That was good to see in print - that we were not imagining she said it.

We also now have a speech and language evaluation - we had that done privately on 8/17. Overall, it too was a positive report. We know what we have to work on (expressive and receptive language, which spills over into his ability to carry on a conversation well) and have their recommendations for how many sessions a week would be appropriate (3 individual sessions in-school, 1 session in-school with another child for reinforcement, and 2 sessions with the speech center). He starts his sessions on 9/11 when we return from vacation, with the recommendation of continuing therapy for about a year (at which time they will reevaluate because they don't feel he will need more than that). Until then, the evaluator gave us some useful things to do at home with him, which we are ALL doing - and Chris is actually responding well to the changes.

Chris goes for a hearing test on 9/13 - his first one. Yipes!

We have inquired about private services with a disabilities center through the University I work for (have a phone conference with them on 9/11), with the Lovass Institute (we are setting up an in-home eval now), and another university near us - all centers provide home-based sessions for children, and parent training so we know what we are doing.

The nursery school teacher Chris had in the spring will be helping us as well in-class until we can get him into an appropriate program for the long term - we just have to provide her with a letter, signed by us, stating what she can and can't do (basically, allowing her to turn his chin toward her if he choses not to respond to her verbally). So, at least, until we get him into the right program, someone is willing to help on the "school level."

We have read so much, inquired so much through contacts of contacts - we have more to do, but feel we that, thus far, we are doing something. He is trying to say more, is visibly trying to stop himself from hand flapping a lot of the time already, and in the instances of certain toys that really provoke the behavior, those are now removed until we re-introduce them later to try again. He is trying to engage other kids at the playground now, instead of just watching them play, or him "inspecting" the playground.

So, all of the positives we were able to get done in two weeks now leads us to the school system...

....The severely fucked up school system....

Guess what????

Take a good guess????

...No, they didn't lose the paperwork we completed on July 9th. Thank goodness for that since we were never FURNISHED with that, after several requests for it (my bad for not asking in person - I always ask for stuff like that!).

...They forgot to enter him into the system!!!

You know what that means???

We could have had most if not all of the evaluation process done by now!

Hubby found that out yesterday when he called like a raving lunatic. The lady on the phone found the paperwork - and also found it was never entered, stated that she very well knows they are in violation of State law now (we should have been contacted within 20 calendar days of 7/9 to begin the eval's more like almost 60 now!), and is going to "expedite things."

Damn right, they are!

So, I faxed over this morning a 15-page fax with a three page cover letter stating all WE have done on our own so far (and what the child study team has not), what evaluations we had, what programs we have already looked at, a request for all forms to be faxed to us, for a list of all of the programs available be faxed to us for our review and a demand that his evaluation be done ASAP. We even said that we will come back from vacation to get these evaluations done and we wanted a very specific answer by tomorrow.

Hubby was going to call this afternoon to roll heads again (it does pay to be married to an attorney from time to time....especially when he can twist things to get a better response than I can), just to make sure his file is not collecting dust.

What a headache! I was already nervous about Chris being in this school system - now I am terrified. I can't believe that we have to hold their hands through this - when they do it all of the time.

To say we are disgusted already with the town's educational system is putting it mildly.

Keep your fingers crossed this part finally gets off the ground... I do not want to see him having to wait until January to get into a school-based, integrative program!


DD said...

I am speechless. I have some excellent four-letter words to describe my emotions...but speechless.

I have to hope that once all the complicated paper work gets to where it needs to be that everything else will go much smoother for the sake of Chris.

niobe said...

What a bunch of, uh, idiots, to put it nicely.

Though I have to say I'm amazed and impressed by all you've managed to get done in this short amount of time.

Jessica said...

So sorry I have't been around for much support. Anyway, I hope things go well tomorrow. I wish you didn't have to be disgusted with the educational system- you are a strong determined woman and Chris is so fortunate to have you as his mommy!