Monday, September 8, 2008
Rock Star Avery
Today was Avery's second day of preschool. The first day was good... today was even better. On the first day and at the open house it was clear the teachers were nervous about Avery being their "special needs kiddo." They asked me several questions like "what sets her off" and what kinds of repetitive things she liked to do. As I have mentioned before, Avery is an under-reactive kid on the Autism spectrum. It takes ALOT to even get her attention. When we went for 4th of July fireworks that were literally right above us, she barely noticed the noise. Anyway, most of the kids were crying on the first, and the second day. Apparently, at any given moment, at least 3 of the 9 kids were upset. On the first day Avery struggled a little bit with transitions (moving from outside back in) and with sitting for long periods during circle time. Today, she went through the day like a champ, even saying "hi" and waving to another little girl when her therapist (who is so kindly there to shadow her) showed her how. Phewww. I must say I am extremely relieved. Bryan and I are working so hard to try to figure out how to help Avery, and how to make the right decisions when choosing therapy, schools etc. I am beginning to have hope that at least this decision was a good one.
On another note, in the last week a few other things have come up. I joined an online support group for parents of kids with Mastocytosis. One of the other mom's there mentioned that her son also had both Masto and Autism... then another one. Finally, they referred me to a site where a doctor at Tufts University is seeking funding and data to do more research on the link between Autism and Mastocytosis. Come to find out that kids with Mastocytosis are 7 times more likely to ALSO have Autism. Why you might ask? Well, the theory is that when your body produces way too many mast cells (the cells responsible for hives and healing) the mast cells not only infiltrate the skin, but also other major organs such was the case last January when we found out that Avery has too many mast cells in her bone marrow as well as her skin. Well, these cells can ALSO invade the brain, causing inflammation and releasing a chemical that makes the brain more susceptible to damage from neuro-toxins... such as those in vaccines, viruses etc. So, this explains WHY Avery was FINE, then after several illnesses, vaccines, antibiotics, etc, her brain started to become inflamed... CAUSING or at least looking like Autism. So, FINALLY we have some answers. We have contacted the doctor in Mass. who is looking further into this link, and we may participate in some research studies that could help with future treatments! If you are interested in this, please check out the link at http://www.wickedlocal.com/brookline/archive/x160320501/Brookline-doctor-seeks-autism-breakthrough In the meantime, however, we wait. Patience is NOT a virtue of mine. When I found out I was pregnant, I wanted to know the sex right away, when Avery turned 6 weeks old, I wanted her to sleep through the night the next night (who knew 2 and a half years later she would be up for hours at a time EVERY night), and when I found out Avery had Autism, I wanted answers and help.. yesterday. I am working on it though. Whether I ever wanted to or not! So yet again, another blessing arises from this whole messy experience. It's the littlest things we are learning to appreciate. And we do so with all the hope in the world.