Sunday, September 14, 2008

an update

I just wrote a long email about Dominic and diagnosis and feelings and such, and figured that I should probably keep it here too.


I never expected to be a special needs mom. Its been a weird and difficult and very frustrating experience.

We're at a point right now where we're kind of avoiding pushing for a diagnosis. There're a couple of things it could be - but the way the diagnostic criteria in the DSM is written, he doesn't fit either Autism or Aspergers. Mutism and Selective mutism don't really fit either, tho they're closer. If I push too hard for a diagnosis, they're going to put him in a fairly generic bucket called "PDD-NOS"
which is pervasive developmental delay, no other specification. Either way, if we end up with a developmental delay flag, insurance will cap benefits at $2500 a year. Also either way, the treatment for any of the above is speech therapy, which we're doing 2x a week.

Dominic's actually doing pretty well this week. Every day is kind of an up and down ride with some being better than others. He definately communicates - mostly nonverbally. When he does do verbal its 95% echolalic where he just says what we say. So we know that the ability to speak words is in his head, but the spontaneity and independent speaking are lacking. this morning was good, tho. After he got up,
he got dressed (probably 60% by himself. dressing is one of those things that if I have more time/patience, he'll do by himself, but he'd rather have me do it),and he looked at me and independently said NEMO. then took me by the hand to where his movies are and said NEMO again. Then he came upstairs, stood in front of the fridge and independently said GRAPES. During breakfast, he independently said COLOR until i brought him crayons and paper.

So he is communicating. but not at all what he was doing a year ago. he's interacting really well in preschool (he's in headstart, which i think is going to be a really good thing), tho the teacher says he's pretty rough. She says he's learning appropriate boundaries, which is good. He is the most affectionate little boy ever - hugs and kisses abound. He loves to be active - its gotten too cold, but we were
doing a lot of swimming this summer. We also have a friend with whom we go ride a horse once a week.

I am part of an online community of special needs moms through one of the mommy support groups online. And i know from that group that in many ways we're lucky - he's potty trained, he is able to eat independently (many of these kids are tube fed), he's not dependent on supplemental oxygen, he doesn't have floppy tone, he's not violent, he loves to be touched/hugged, etc. We'e actually in the grand scheme
of things pretty lucky. The severity of issues for special needs kids is amazing. What that group has taught me, tho, is that we celebrate in inchstones around here, not milestones; the little things are very important, not just the big.

So, we just keep on going one step at a time.


Jen said...

Pushing for a diagnosis often doesn't seem to be a smart move, because--maybe not now, but perhaps in the future--health insurance really will throw it back in your face. In Michigan they can reject to give any kind of coverage to kids with "issues" if you're purchasing your own insurance (we are, as my husband is self-employed).

Have they ever considered doing a course of Occupational Therapy with Dominic? My boys have had great success with a combination of speech and occupational therapy.

Kate said...

My nephew has the PDD-NOS...I have learned diet and probiotics really help some kids. And, there is a chiro near Tampa that does oxygen therapy which has helped some kids tremendously. He's a gorgeous boy~! Kate/QE3