Oh June…

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.

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  • Night and day. You have such a diverse autism experience!

    I hope you find some answers soon on the mitochondrial disorder issues. That has to be stressful having all the questions linger!

    Good luck on the IEP. You’ll get through it. I think the key thing is just knowing your rights. The rest of the issues will work themselves out as long as you keep everyone honest and working in your child’s best interest! You’ll do fine!

  • First, I love the new look of the blog!

    I am glad you got good results from the testing, I think. I guess you still don’t have all the answers, but it will be good to start the boys on some vitamin therapy and see if this makes a difference.

    So happy to hear about the word imitation and spontaneous interaction from John!!! Don’t fret the IEP too much, you’ll do fine. It sounds like you already have a good idea where each boy belongs for preschool. Just make your points clear and back up with a written letter if necessary.

  • I’ve probably missed the posts where you discuss mitochondrial autism or a mitochondrial disorder – I’ve never heard of such a thing! Do you know of any links to sites that explain those terms?

  • I’m with Mamaroo! I love the new look.

    It is so interesting to me that your kids are so alike that you only have to take blood from one and yet both kids present so differently. …

    Good luck with the IEP! I’m so glad we are done with those for awhile!

  • It’s wonderful that John is starting to interact with Sam. People always say to me, “It’ll be great when they all play together”, and I think, “You have no idea how great that will be!”

    I love reading about all their progress!

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