Jason turns three next month. I can hardly believe it! This is a big birthday for him because it means that he is no longer eligible for state-provided physical/ occupational therapy. As of his birthday it becomes the school district's responsibility to provide any services he needs, not the state's. In KY (I don't know about other places), this means he would go to the public special ed preschool and his therapist would visit him there.
I wasn't a big fan of this plan for a couple reasons, primarily because in my experience over the last two years one of the key philosophies in early intervention is heavy parental involvement. Me and John are involved in care plan meetings and goal-setting, the therapists come to our house, they teach us how to continue working with him for the rest of the week (or two weeks) before they come again. I am present at every session, and John makes it to a good portion of them as well. Anyway, if I understood everything right, this would all change. A therapist would come and pull him out of class once a month, work with him for an hour and then tell his teacher what she could do to help him (I met her and she is excellent, but she would simultaneously be working with another dozen kids). The therapist would meet with us once a year. It just seems weird to me that for three years we're told our participation is essential and suddenly one day our role is practically an afterthought and we don't even have direct access to talk to his therapist regularly.
But I'm getting off topic. Even though we we're totally enthusiatic about this we started doing all the paperwork and meetings we needed in order to get Jason enrolled. At least he continue to have therapy, even if it wasn't as often and we couldn't reinforce it like we have been. Last month they finally did his formal testing to see if he qualified. We had them test motor skills (obviously) and also language skills, because his current therapists have mentioned that they think his hemiparesis might be affecting his oral muscles and affecting his ability to pronounce words correctly.
Right before the test we found out that he would have to test at two standard deviations below the mean in order to qualify based on motor skills (basically, be in the bottom 2-3% of kids his age). At that point, we pretty much knew he wasn't going to qualify based on motor skills. So we were pretty much just waiting to see how speech went. When the test started, I realized they were't even evaluating his ability to form words, just his comprehension/vocabulary/rule skills. But then Jason got distracted before the test was over and the therapist giving the test decided to call it quits. Since quitting early would bring his score down, I thought maybe that would qualify him.
Nope! Test results came back last week. Speech skills = 91st percentile. Motor skills = 95th percentile (that's about two standard deviations above the mean)! We're not really sure how he did so well on motor skills. I was there for the test, and he did well, but there were still a couple things he had trouble with. Plus, when he was tested in June by his PT he was in the 16th percentile. From what I understand from his therapists though, the tests they do are more detailed than the school tests. For example, Jason can do most things (or maybe more things according to this test) a "normal" 34-month-old can do, but he does them using different strategies and movements than a "normal" kid. His June test recorded his compensatory skills and he scored with mild delay because he does not do 34-month-old skills in the same way as other kids. His school test probably ignored his compensatory skills and so he scored high because he acheives the same results as a "normal" kid.
As far as speech goes, it turns out that Jason was already answering questions designed for 3 1/2-4-year-olds when the therapist terminated the test. The report said he may have scored even higher if his attention span was a little longer! Still we don't have any more information on whether his pronouciation problems are pathological or just age-related. We'll probably just have to wait until he's older.
So it is great news that Jason is doing so well. The frustrating part is that everybody - us, his current therapy team, the school administrator - knows that he would benefit from continued therapy and that he could potentially lose a lot of ground if he doesn't get it. And now he's about to be one of the kids that falls through the cracks of a system that relies rigidly on standardized tests that may or may not accurately reflect a kid's needs. Scary!
We're hoping that our insurance will cover PT and/or OT at an outpatient clinic, since that seems to be our only option if we want to continue therapy with Jason. Guess we'll find out next month...
In the meantime, I would just like to recognize Kristin, Martina, Pam and Iris, Jason's therapists, for the incredible difference they have made in his life and for helping him acheive everything he has so far. I'm really going to miss having their support and input. I would be a lot more worried about this situation if it wasn't for everything they have taught us. I am also confident in my son. The therapy wouldn't have gotten him to where he is today if he wasn't so bright, determined, and full of life. He's a great kid and we are just praying we can give him all the tools he needs to reach his maximum potential.
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