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Friday, June 10, 2016

Calling in the Big Guns

I have spent the past two days talking to my amazing specialists about my son’s genetic results. I spoke to the head of the JASPER team at UCLA. They connected me with the head of the whole Neurological Department at UCLA and I spoke to him for 15 minutes. Both of them said the same thing, that we don’t know anything. That even though we can see these markers we don’t really know yet how those translate into behaviors in individuals. And that there are so many things we still do not know about autism and how it represents in the genes.

I also called and spoke to the psychologist that diagnosed my Little Cricket with autism through the Westside Regional Center. She said that it could explain how my Little Cricket doesn’t fit perfectly into the autism label. That I should continue to work with the therapists that are allowing my son to grow so much. That I should continue to use the autism label, because he fits the criteria and that we don’t know. And that if he grows out of it in the future then I will have my answer. Basically a wait and see approach.

I made an appointment with my Little Crickets developmental pediatrician to go over the results and for a checkup.

I also called a pediatric neurologist who basically followed what the people at UCLA stated. That the medical community knows enough to now identify these duplications and deletions but that they don’t know enough to actually do much with the information yet. And that we know even less about autism. She encouraged me to work on expanding the limitations that my son has. To not focus on the diagnosis but instead on the symptoms.

And so I am left, a little more hopeful that it might end up not being autism, tempering that with realism that it just might still be. I tell myself not to think, to just put my head down and work, but it is like a bump, itching to be scratched.

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