Friday, March 23, 2012

Will's Frustrating World

I still have a few more openings for guest bloggers. Go HERE for more information.


Yesterday William had his follow-up appointment with the Developmental Pediatrician. We last saw her about 6 months ago. Still the same diagnosis: apraxia and some sensory processing issues.

I'm happy to share that she was pleased with the overall progress Will has been making with his motor planning and attempts at speech. On the other hand, she was very disappointed with the lack of intelligible speech Will has and the fact that TriCare has DENIED private speech therapy on several occasions on the basis that there is nothing in his records that indicates a need for such services.

It's crap, I know.

He gets 1 hour of group speech a week at pre-school. He desperately needs individual, intense speech therapy. (Other therapies William gets are Occupational Therapy for 1 hour every week and Feeding Therapy which is now only once a month).

Thing is, the therapist that has been treating Will for feeding therapy is a speech therapist. Insurance has decided Will is already seeing an SLP, there's no reason for additional treatment. What they have failed to understand is that FEEDING therapy is not addressing SPEECH.

It was good to talk with the Developmental Pediatrician and get advice on things to pursue when we move to Ohio. She agrees that there's no reason to fight for things right now with only about 2 months left before the move. Feeding therapy will not continue once we PCS so there should not be any issue with getting insurance to approve private speech therapy at that time.

I also mentioned that we are planning to get Will into gymnastics (and likely Alanna as well). It should help with his coordination and balance. It will also be a benefit to be among normal developing peers. The doctor was in agreement stating that dance, gymnastics, and karate would be of the best benefit for him. Trying soccer, T-ball, and other such sports are not the activities that he needs to help with his development. I'm okay with that for now. We discussed swimming and although she doesn't see as much benefit I told her how well he progressed with his movement and body control when his early intervention occupational therapist worked with him at the pool. I hope to find swimming lessons for the kids at our next base.

Ug. I read over what I have written and it makes my son sound like he has all these awful issues and is "abnormal." Thing is, most people recognize him as a normal child around other kids. He's quiet though and still parallel plays or goes off by himself to play. With the right kids around he will be cooperative in his playing. It isn't until he tries talking that people realize he can't communicate as well.

That's the thing about Will. He understands everything. He loves to be social. He likes to play. He enjoys music and animals. What makes him different is his inability to verbally communicate like most people do.

While talking with the doctor today she explained that with all the testing and everything else, Will seems NORMAL -- no genetic disorder, no weird blood issues, no medical conditions. It is just that all of our brains are wired differently. Some people process math and science well. Others are more talented with language and arts. Some people have an innate ability to control their body and movements (athletic ability). Every brain is different.

The issue is that Will's brain doesn't communicate well with motor functions or processing well what input comes his way. He has the language in his brain. He knows what he wants to say... but actually forming the words with his mouth and tongue just don't work right. In the same way he knows what his arms and hands SHOULD be doing, but making them actually do that is another problem. He literally has to train his hands how to manipulate what he wants to do. These processing issues are also evident in some of his fine motor planning (holding a pencil, counting on fingers), some awkward movements (like running), and problems with feeding/food textures. It is a frustrating world my little boy lives in.

At least I can understand him most of the time! For now I am his interpreter until he fully finds his voice.


1 comment:

  1. Without reading the back story, have you given thought to sign language??? It might take some of his fustration (anxiety?) away.

    I also must throw this out there,

    Hippotherapy is very good for large and fine motor skills....