The realization ...

Wednesday, January 27, 2010

You’ll be hearing more and more from me about this over the coming weeks (and months. And probably years), but I wanted to share an update on Dylan with you. I’m crying as I type this so please bear with me. It’s certainly been a very trying week.

It’s become very clear to Bryan and me that Dylan’s speech issues are not getting better. Yes, he’s talking more. Yes, he’s getting bigger. And yes, he’s totally freaking cute! However, his speech is mostly unintelligible. We’ve been in denial, I think. When he was first diagnosed with a speech delay we were concerned, but not alarmed. When he tested borderline on the CARS autism assessment we were a bit more alarmed. We said to ourselves “even though Dylan hasn’t been labeled as ‘special needs’ we’re going to treat the situation that way. We’re going to work diligently to make sure he gets everything he needs to be successful in life”. Then he seemed to get a bit better. Then he was diagnosed with Childhood Apraxia of Speech. That seemed scary. Our speech therapist didn’t have a ton of experience with it – come to find out not many people in our entire community have much experience with it. There are no definitive outcomes of this disability – some children recover and have totally normal speech, some always have an accent and some never speak clearly. But that was OK with us – we’ll fight through it and give Dylan every advantage we can.

Then we had the difficult realization that he needed to go to a “Developmental Preschool”. Ugh, that was a jagged pill to swallow. But he seemed to do well at the school and they recommended he re-enter “normal” preschool fulltime. And we thought “huh, we’re kicking this developmental issue’s ass”. And we went on our merry way with a slightly crazy toddler and a needy baby. And we somehow forgot our promise to remain diligent and fight for Dylan. Sure we remember that he has apraxia. And we do our therapy, see our developmental pediatrician, practice good speaking habits at home. However, we haven’t been FIGHTING.

Recently we’ve had a couple of social issues that set off the alarm bells for me. What’s going on with Dylan? Why is he not getting invited to parties? Why is he playing by himself? Why is he not friends with Travis anymore? And it donned on me … it’s the speech issue. So, we’ve recommitted to our promise.

I’ve talked with his speech therapist and his special education teacher (who sees him at his preschool once per week). They’ve noticed an increase in the unintelligibility, too. Part of this is good – he’s learning more words and increasing his vocabulary. However, this makes him unintelligible about 60% of the time. So, we’re embarking on some new therapies and a TON of research. More signing. An augmentative speaking device (a little computer that we’ll be able to program and he can push buttons to form sentences and the computer speaks for him), and possibly some alternative medicine therapies.

Pray for us. Pray for Dylan. Or whatever sort of spiritual, good energy thing you do. We need our family and friends to rally around and support us as. I feel I have a new mission in my life and that’s to learn as much about this disorder as I can to not only help Dylan, but help other families going through this situation.

I want to leave you with some good news – Dylan DOES HAVE AVERAGE INTELLIGENCE! That was confirmed during some testing in December. That was an enormous relief for us. There’s no reason he won’t be able to go to college and get a PhD. He may have trouble speaking, but he doesn’t have trouble learning or problem solving! Whew!