Saturday, June 09, 2007

Blindsided, part 2, and regrouping

This is what I wrote Thursday afternoon after reading the post Trillian had sent to me:

I knew that Scooter's speech therapist was having another therapist come to his session this week--Trillian had told me that the time had been moved back a little to accommodate the other therapist's schedule. I didn't think twice about it, because at this point I'm used to doctors and therapists wanting to consult with a colleague or give a student some experience. Neither of us even thought to ask why.

And so I was dumbfounded when I checked in with Trillian after I was done teaching and found out that the therapist had gone through the M-CHAT and felt strongly enough about the results that we were suddenly getting a referral to a developmental pediatrician--something we had asked for four months ago when we first found out about the process for evaluation here, something we were dissuaded from and made to feel was unnecessary.

It is still possible that we are just looking at sensory issues. All kids with ASD have SPD, but the converse is not true. And the provincial occupational therapist said to Trillian a couple weeks ago that sometimes kids with SPD act just plain weird, because they are so overwhelmed by the world around them. Sometimes "weird" can manifest itself as behaviors that look like ASD. (Of course, by the end of the appointment, during which Scooter refused to utter a single word, she said she'd talk to our current service providers to determine is we need further testing.)

I comfort myself with the reminder that the most likely course of action for a high-functioning autistic child would be speech and occupational therapy--exactly what we've got him in now. And if we can get his sensory issues under control and help his verbal expression catch up with his thoughts, we'll then be able to sort out what else exactly he needs.

So now there is a greater urgency for us to figure out where we will be for Scooter's schooling. And then to make the move a reality. Short of finding out that there are no services available in my in-laws' state, that is where we want to be. They are on-board for homeschooling or whatever other support we might need. Living near them has always been an attractive proposition; now it may be our lifeline.

After a couple days to digest all of this, I feel I should add that we're moving past the initial moments of sadness, just as Trillian said she would in her post. And I'm able to recall something we had said to each other as Scooter got started in OT a couple months ago: While we might not have fully ruled out autism at that point, it would be OK if we didn't get that figured out for a bit longer since OT would be one of the first things suggested anyway.

I think that what this new development has done for us is make more concrete the likelihood that things won't necessarily be "all better" in time for kindergarten at age 5. We've both said all along that we want his earliest school experiences to be positive, so we also realize that this makes it more likely that we'll give homeschooling a chance, coupled with the therapies and controlled opportunities for socialization. Gives me something new to research, and I like to have a purpose.


Aliki2006 said...

I'm glad you're feeling better about things--well, if not better, than more comforted by the situation. It sounds like you both have already worked hard to put into place already what Scooter needs.

Lisa b said...

I won't say I know how you feel but I do see a similar path unfolding in front of me.
I have made peace with the not knowing for the time being but I can see how the frustrations you have will be the same for me. I know I am lucky right now as I am already in line for OT and follow up with developmental pediatricians. This is somewhat comforting but really hasn't changed a thing for my daughter. Any kind of diagnosis for a child gives some ideas of what their challenges may be but there is still so much variation within any disorder that all you can do is what you are already doing.
Scooter is lucky to have such great parents who really think through all of their options and create the best environment for him.

crazymumma said...

Scooter is so lucky to have such intelligent thoughtful and giving parents. really.

I understand your sadness, life is hard enough, but I do believe that once you get over the hump it all just becomes your families 'normal', and then things will feel better.

Mouse said...

It definitely helps to know that we're doing what we need to right now. And with some time, we're settling back to where we were and holding steady. It also helps that he's still his sweet self and happily doles out kisses and hugs.

Vikki said...

I don't have much to add but my thoughts are with you.