Tuesday, August 21, 2007

A key to the gate

The post I was composing in my head as I ran errands around campus and downtown today was entitled "Stuck in the land of preliminary evaluations." I was pondering the fact that we have been feeling stuck in the system right now.

During Scooter's playgroup last week, when I spent so much time chatting with the other mothers,* I discovered that the other boy is in the process of being evaluated at the same place where we have our appointment for the end of October. She warned me of something I'd heard others allude to: the first appointment is more preliminary than anything else, a screening to decide if the child needs to move on to a more thorough evaluation. But she added a piece of information I had not been given: the time between her initial assessment (just this month) and the second evaluation is 6 months. When I do the math, that adds up to us not being here for the most important part.

This basic information was confirmed when I went to Scooter's speech therapy playgroup this week. I spoke with the coordinator afterwards, mentioned the recent frustration of having people dismiss our concerns, insist that Scooter is perfectly normal. She was supportive and, despite her frequent reminders that she cannot diagnose (though she has worked with so many autistic children that we trust her impression), spoke some to the changes she's seen in Scooter since the first time she observed him. She actually saw him at one of his lowest points; he was grinding his teeth and chewing on his clothing nearly non-stop, brought on, we're almost positive, by what we'd been told to do with him in speech therapy. At the time, she told Trillian "mild to moderate."

The coordinator began by saying, "He's so high-functioning" that people who only observe him casually might not pick up on the little things that are concerning. And she told us that her opinion is that he'll be diagnosed either as very high on the spectrum or PDD-NOS--and that the second is where she most expects he'll end up.

But the other side of what I found out in this conversation is that the playgroup he's currently in, that runs for only 5 weeks (and we're missing 2 because of vacation/house-hunting), counts as a block of treatment in place of the 8 weeks we thought he'd start in September. While the playgroup is generally good--and was apparently much better this week since the most disruptive child wasn't there this week--we had thought that this was in addition to a regular session.

So now we need to try and find some sort of speech therapy for the fall--out-of-pocket, of course.

These were the frustrations bouncing around my head until I got home. Trillian was chatting with her mother online. Turns out her mother had gotten in touch with the clinic in their general area that does developmental evaluations. She had spoken with the receptionist for a while, but couldn't provide all of the information they needed. So my mother-in-law passed the phone number along to us and I made the call. The receptionist immediately knew who I was and had the intake form ready to be filled in. She took down all of our information, including Trillian and Scooter's US insurance, and told us she'd work on getting pre-approval for the appointment.

Then she asked when we'd be in town next, which is for approximately the next three weeks (we'll be there in a couple days). I said that we would also be in and out of town for a number of things this fall and would be willing to make a trip for whenever we could get an appointment. She then apologized--they didn't have any appointments for our current trip--but they did have an opening the last week of September and then several more in October.

We're currently planning the logistics of this trip (do Scooter and Trillian extend their stay or do we make a trip back 2 weeks after our first trip?) and know that it will cost a bit either way. But insurance will likely cover the appointment itself and we may actually be a step closer to moving from hunches and suspicions to an actual diagnosis.

*We spent a lot of time lamenting the fact that occupational therapy is not covered for any of the possible diagnoses of our children, despite the fact that it is the one single therapy that has done the most good.


Aliki2006 said...

I'm glad they can see you in September--that's not so far away.

I can understand your frustration--the waiting is the hardest part...we had a pretty quick evaluation process, but I know it can be a lengthy waiting process in general.

Lisa b said...

Oh I am so happy for you. Clearly this move is going to be a great thing for your family.