Blogging has been relegated to lowest priority in my life, but I am moving it up for awhile. Summer is here, third birthdays are around the corner, our calendar is getting more full every day, and I must write or go bonkers.
We got the results back from our first big metabolic workup and they are still inconclusive. On the one hand, it ruled out “typical” mitochondrdial autism. In other words, a defect normally seen in those thought to suffer from mitochondrial autism was not there. On the other hand, the results still showed clear evidence of a mitochondrial disorder. Which entails another blood test and metabolic panel to narrow it down. They are recommending, though, that both boys start vitamin therapy and we will begin after our next doctor’s visit this week.
Our first IEP meeting has been scheduled for later this month. We are speaking with an advocate to prepare ourselves but it seems more or less clear which programs are right for each boy — at least from our point of view. There has been some talk that another program is better for John and I disagree. I don’t want to feel like I’m gearing up for a fight here, but I have read and heard too many terrible IEP stories to not pre-stress in advance. And if you know anything about me, that’s a full-time job.
John is making great progress from his ABA sessions. We now receive 16 hours per week from our EI team and he is making more and more eye contact. He’s even started to imitate words spontaneously and interact with Sam — interactions usually instigated by Sam that entail wrestling and lots of smiles (monitored closely for their tendency to devolve into biting). But still — interaction is interaction! He is also getting much better about being out with me in the world. Meltdowns can often be curtailed by firm pressure to his shoulders and a reassuring look. He loves to draw and “read” his books.
Sam is a whirlwind of talk and movement from the moment he opens his eyes in the morning. He continues to be very social, he greets strangers when we’re out and about. His newest obsession is Thomas the Tank Engine and, thanks to his dad, just about owns every single character already. We started private speech therapy 1x/week and he very deliberately uses sentences now in a functional way (“I want juice” or “I want TV”; “I hear an airplane” and “I see Mommy’s car”). Of course, he is still quite capable of getting stuck on reciting his videos. But he is also very much a two-year-old with tantrums to match. I am both happy and horrified by this neurotypical-ness.