Sunday, August 3, 2008

How did you know?

That is the questions most asked about Will. What were his symptoms?, When did we figure it out?, etc. Here is the short of it, (or maybe the long....)

Will was typically developing, hitting his milestones, (crawling, walking, babbling, etc on time), even spoke a few words (mom, dada, baba, gom (for grandma). He laughed, hugged, cuddled, etc. I even remember showing Kevin that Will had none of the traits for Autism in a parent magazine once when Will was around 1. At his 18 month doctor well visit he hadn't gained any new words and the other ones were either gone or few and far between. Our wonderful pediatrician
Dr. Susan Smiley recommended a hearing and a speech test at Children's Healthcare.

I had no problem with the hearing test. I however, wasn't really interested in the speech test. I had read on tons of Internet sites that kids didn't talk until after 2 sometimes. No big deal, he is going to be a late talker. (Probably because I never make him ask for anything, right?) No reason to make him take any unnecessary tests...

My sister was bugging... 'When are you going to get that test?", "Why haven't you scheduled that test yet?", "You are stupid if you don't get that test done", etc. Finally I said to her "What do you think is wrong with my child??!"

"One of my friends is a teacher of Autistic children and she thinks some of his traits are Autistic" She said.

What? She is crazy.

So I googled "Autism". Took me straight to the
Wikipedia. I read. Kevin was in the next room. I said "Will does some of these things, these characteristics". Will can't be Autistic. Will can't be Autistic, I thought but I got a sick feeling in my belly and it stayed there for a while.

Over the next few days we read, I cried A LOT! I was constantly calling Kevin freaking out or Grandma. Didn't want to talk with Karen at this point. Not mad at her, but she just turned the world upside down.

(I later thank her, because although it was very difficult for her to say something, she did and we could get started with treatment earlier because of that)

Kevin and Grandma keep calling Karen telling her she better stop freaking me out that there is no way Will has Autism. (They did not want to believe her)

So I called our Pediatrician, crying to her as I said those words "I think there might be something wrong with my baby". She said she doesn't think he does have it, but if you have a bad feeling, you should check it out.

She recommended
Emory Autism Center and The Marcus Institute . We made an appointment for an Initial Information Meeting in the beginning of April.

Oh, by the way, those traits that Will has or had in the beginning were:

Difficulty understanding emotions of others*fleeting eye contact*difficulty making friendships*lack of emotional reciprocity*does not show/point out/bring objects*doesn't understand social cues*affection on his own terms*no pretend play*no imitation*pulling adults to items rather than pointing*verbal communication*spinning/flapping/tip toes/looking at fingers*doesn't respond when called*spins wheels* not interested in wide variety of toys*does not ask for help*under sensitive to pain*eating inedible objects*sleep problems* self-injurious behavior (head banging)*

We answered questions, Will played some, whined some, and really just wanted out of that room. It lasted a little less than an hour. Although he said that he couldn't tell us anything at that appointment (we would have to wait for a diagnosis to be scheduled for 8 months later), we should move forward. Along with giving me handouts for everything Autism, how to get services, funding, etc. I knew that he was really telling me that he suspected it to be true.

The rest is just a blur. Hours on the phone trying to set up appointments, dealing with insurance, reading everything we could find about Autism. We knew well before we got an official diagnosis at The Child Neurology Associates on June 25th. I'll never forget that date because I had called everyday since May to see if they had any cancellations so we could see the dr. earlier. "Early diagnosis is the key" or so I hear.

We are now getting one hour a week of Occupational therapy, one of special instruction, and soon one of speech therapy (Babies Can't wait has just hired someone). We are about to start a development growth therapy. We see a DAN! (defeat Autism now) Dr. and are working on the biomedical treatment. We have applied for services from the government (social security for Will, Medicaid, Deeming Waivers, etc) but have not heard back yet.

I feel like we have come to some version of acceptance. We know what we need to do for now. Even with that acceptance, some days you still mourn the normal life you had envisioned for your child.

3 comments:

  1. You could have been describing us! How's the behavior doing. The boys tantrumed bad for their OT for the 1st ten minutes this am. Blake's chin keeps breaking out. Just as a couple bumps start to heal, he gets more. OT said it's yeast die-off. She's seen it in other clients.

    ReplyDelete
  2. It takes a while. My son is 19 and people still ask me that!

    ReplyDelete
  3. Our dx date is September 27, 2007...I will never forget it! You're doing a great job...keep it up!

    ReplyDelete