So... I set this blog up a while back with the intent to track my son's progress. My son Chase was diagnosed with PDD-NOS, Pervasive Development Disorder- Not Otherwise Specified. To anybody that hasn't been initiated in the ASD world, it's what some call "Autism Light", "Atypical Autism", or "just a nice way to say your son's autistic without using the "A" word."
What I need to do is track Chase's progressions/regressions/ups/downs/etc. to share with our very own A-team. I just made that up. Autism Team, A-team. Yep, I'm a dork.
Here's the story:
Chase is 2 and half years old. He was developing normally until he was about a year old. Actually, he's always been and still is quite advanced with his motor skills. He was crawling at 5.5 months and walking well at 9.5 months. Of course, we didn't really notice that anything was different about him until about last spring (2006). We just thought that he was difficult and had early-onset terrible twos. Starting at about 10 months, he was saying some words, Kitty, nigh-nigh (when he wanted to sleep), Stacy (his aunt), some other words, too. He lost
Momma and
Dadda very early. After he was one, he stopped saying words and just spoke in what we called "Chinese" and the professionals now call "jargon". We were amazed at the long attention span he had to be able to watch his Thomas videos and how he had so much fun at daycare, he seemed to not even care when I left him. (It's amazing and painful to me now that's really what I saw and didn't realize that wasn't something that was good.)
Our first clue that something might be wrong was a Super Nanny show we saw last May (repeat from Nov 2005). My husband and I tuned in a little late and missed the beginning. When we saw the way the 3 year old was acting, we're like, "Oh my gosh! He's acting like Chase!" So, as I often do, I called my mom and asked if she was watching. She was quiet and then said, "Did you see the beginning? The little boy is autistic." I was shocked. No way could Chase be autistic. My thoughts were confirmed by our pediatrician. As Chase was hugging and playing with her, she said, "I can't imagine that there's any possibility that he's autistic, but he does need some help with speech. Call Early On and they'll get you some help." She also sent us to a neurologist to test for
absence seizures (which he thankfully is not having.)
Being the end of the school year, we didn't end up with an evaluation until September, but by then, we were starting to see so many of the things about Chase's behavior in a new way. So, we've seen a neurologist, Early On speech therapist, Occupational therapist, hospital rehab speech therapist, and U of M multidisciplinary evaluation clinicians. We're involved in the Early On SLIM group (which is great!), home visits once or twice a week, and we're starting this week with two visits to Sparrow Rehab speech therapy a week. I'm burning through
FMLA like crazy. Luckily, my mother watches Chase and his little sister at our home while I'm working. We tried daycare a couple days a week, but it was just too much for Chase.
I also started Chase on a
GFCF (Gluten/Casein Free) diet at the beginning of January. I feel like it's helping him, but it's also one thing that I can greatly control, so maybe it's actually more for me. But, he's adjusted well and is actually eating better now. I also just found a doctor in Grass Lake that does the DAN protocol and had an appointment with him a couple weeks ago. His current pediatrician just doesn't have enough experience with autistic children. Our new DAN doctor suggested leaving Chase with everything that we're doing now and adding Methyl B12 shots. I think that I've noticed some
behaviors possibly resulting from the shots, so that's why I'm finally here. I HAVE to track his treatments and have some sane way to share with any of our A team and anyone else that's interested.
