Deacon is one in a million! It seems every doctor we meet is stumped by him. Today's appointment at the Meyer Center wasn't too much different!
Our appointment was scheduled at 8am this morning, where we met with Dr. Voigt and a resident, who is also a neurologist. They spent most of the two hours we were there asking questions and testing Deacon for his evaluation. Both doctors were extremely nice and interested in all information we had to share. Deacon was in his normal state:laughing and climbing, and would participate in the activities that interested him (anything having to do with the bells, clinking blocks, or lights) and ignore the non-stimulating stuff like the pegboard or coloring. He showed off his ability to follow the commands "no," "sit down," and "jump" (when I sing the Yo Gabba Gabba jump song).
Dr. Voigt said he was in about the 12 month range in most areas (10 months for speech, and 2 years for gross motor). Which is a slight improvement from his last evaluation. We discussed the professionals who initially thought Deacon had autism upon meeting him, who usually changed their opinion after further observation. The doctor agreed that it was so hard to tell because of his vision issues which have symptoms that really mimic autism (less eye contact, echoing words, delayed communication), but agreed that throughout our visit, Deacon initiated play, laughed, and made lots of eye contact.
He said we are doing everything right for Deacon with his therapies, and that he would benefit the most with ABA Therapy. From our understanding, insurance doesn't typically cover ABA therapy unless there has been an autism diagnosis. The doctor said that he didn't want to be unethical by giving him a diagnosis that he wasn't sure really existed, so is referring us to a neuropsychologist for further testing. (We both got the impression that the doctor doesn't think it is autism [yay!] but doesn't want Deacon to miss out on therapy services because they are so expensive without insurance. It looks like just by the nature of the test, that doesn't take into account vision issues, he will "qualify" as having autism on paper.) Dr. Voigt is also referring Deacon to a genetics specialist to see if they want to test for anything else, and also find out more information about his sodium receptor issues and their connection to everything. He wasn't able to give us a prognosis, saying each time we visit it will give him more information on how much Deacon has grown from the last visit, allowing him to track progress and project for the future.
So, we left the visit with not much more than what we came knowing, but somehow still felt satisfied and optimistic. It's nice to hear we are doing all the right things and to also have another set of resources to refer to.
Have I mentioned how one-of-a-kind our little fella is??
3 weeks ago