This is Alex last Halloween (as a green M&M... what his earlier ABA therapists used as a reinforcer because he was addicted to them... and earned us a $4k bill for dental work last year... not really complaining... ABA WORKS) with his paraprofessional that year, Adrienne (speaking of bees...). I love this picture.Alex had an appointment with his DAN doctor in Wilton today. He seemed spacier than usual the past couple of days and his verbal language seemed to dip back down to barely stringing 2 words together. We suspected it was time he came in for his next dose of glutathione. We'll watch his reaction then decide if its time we moved to just using the transdermal version for maintenance as right now, he's taking it via IV. I brought my brother along to help hold him down in case he freaked. After Alex's first dose of glutathione about 2 months ago, the result was immediate, noticeable and positive. Seeing Alex alert, interactive, "chatty" and stringing words together for weeks after was a hundred times worth the hassle. And further hassle it could very well be as glutathione can temporarily exacerbate yeast/fungal issues in the gut. Knowing this phase will be temporary helps a lot... he can become a real monster. And I'm not talking Elmo. A dose of GABA along with the antifungal helps reduce the length and intensity of the tantruming.
GABA stands for Gamma-aminobutyric acid. It's an inhibitory neurotransmitter. It acts as a "slow down" signal in the brain and plays an important role in early brain development. Scientists have found two autism-related genes directly linked to this neurotramsmitter. A damaged GABA system could flood the brain with sensory information, leading to autistic behaviors. Which makes total sense to me as one of the earliest indicators that something was wrong with Alex was his response to sensory stimuli.
When he was little one summer we were at a barbecue. 'Awfully hot, they turned on the sprinklers for the kids to run around in and cool off. The second the water touched Alex he screamed bloody murder. As a parent, you recognize different types of screaming... the outraged scream, the angry scream, the hurt scream, the scared scream, etc. Alex's made all my alarm bells go off. It was like someone was pulling his finger nails out. He screwed his eyes shut, covered his ears (which was something we came to recognize more and more as common in autistic children) and ran blindly into the sprinkler that was causing the "pain." I took him inside where it was quiet, dark, low key. It still took an hour before he would stop shaking. I remember holding him, feeling like crying and asking out loud over and over again, "What's wrong, sweetie? Please, tell me Mommy what's wrong." There were other indicators that he has what's now known as sensory integration dysfunction. SID is the inability of the brain to correctly process information brought in by the senses. Alex's nervous system was on overload. You notice it when there's way too much going on... too much noise (cacophony versus something structured like music -real music not the crap some people listen to today-), too many people talking at once, too much going on like in a mall, too much visual stimuli. You lose him in the chaos his brain is either at a loss trying to process, can't filter or trying to shut out as a defensive mechanism.
Soon they'll find out why the GABA system isn't working properly in autistic children and why the levels of it are so low in them. And then maybe do something to fix it. Meanwhile, we'll have to supplement what his body has trouble producing.
Back to the doctor's visit...
Alex actually surprised me in that when we got there, he went right for the front door and let himself in and he not only seemed to recognize Dr. Szakacs but he looked right at her, said "Hi." Alex also didn't freak as we sat down in the room where they took his blood for tests and gave him his first shot. Didn't freak when he saw her open the kits and didn't freak when he saw the needle. He was more intensely curious about it all. We got two "squeaks" out of him (when the needle went in and when she had to adjust it to make sure the glutathione was going into a blood vessel) but otherwise found it fascinating to watch his blood. He felt some anxiety, of course, and seemed to regulate his fear (independently!) by counting. After, he quickly babbled something and pointed to the rest of the office. I had no idea what he was saying so I put him down and said, "Show me." And he led me around, looking into rooms one by one. Tour anyone?
At the doctor's office there was another mother with her son. A secretary did a double take because she said the boys looked so much alike. Alex looked over at them, smiled and giggled AND SAID, "Hi." I went over and found out the woman was also from the Philippines (I thought I recognized the accent!) and they hailed from Danbury. We exchanged phone numbers. Was so thrilled to meet another filipina with an autistic child. I mean NOT thrilled that her child was autistic but...
In meeting other parents I've found there are two hurdles. One, being a minority parent there are things about the native culture and mind set that someone from another culture just doesn't get. The second hurdle, usually even more isolating, is being the parent of an autistic child since it comes with a whole different set of challenges and experiences. Looking forward to getting to know them.
