Saturday, July 14, 2012

Remy's Diagnosis

A diagnosis is not something that generally brings comfort, but it is something that should bring a sense of clarity and maybe even a sense of progress (in the sense that you start out not knowing - now you know and you get to move into the next phase.) I expected our meeting with the pediatrician to provide these things. Unfortunately, the woman who was present for both his ADOS and Bayley and was supposed to go over the  results with me was out sick and Remy's BAT consult filled in. She is a lovely girl, but it is never easy filling in for someone last minute and when she went over the results with me I just got more confused. It sounded like she was saying that he tested ASD (Autism Spectrum Disorder) but that they weren't going to diagnose him yet, rather we were going to redo the whole process again in about 6 months. Meanwhile the pediatrician was busy advising me on the blood work and genetic testing she wanted and didn't speak much about autism.

I cried in the car in the way home because the 6 month wait for the Autism Clinic and the process itself were not easy and I hated the thought that it had come to nothing (a woe-is-me moment!) and now we would have to do it again. When I got home I ranted to a few people and then finally got smart and emailed the girl herself (Remy's behavioral helper). She got my email and spoke to the pediatrician (the one who actually makes the diagnosis) and then called me that afternoon to apologize for the confusion and told me that the pediatrician did plan to diagnose him with ASD, which, under the new DSM, will just be called Autism (it's weird). Also, we do NOT have to do the Autism Clinic again. When Remy gets closer to preschool age the school district will do some more testing, but that is still a ways down the road.

Having received the information from the pediatrician second-hand, I am really looking forward to getting her full report, which should be ready early next week.  I also need to follow-up with Remy's pediatrician so we can line up the tests and referrals that the EI pediatrician wants.  Also, coming up next week, is Remy's appointment with the neuropsychologist. She will do her own diagnosing, providing us with a second opinion as well as the necessary in-plan referral we need to get additional therapy for Remy covered under our insurance.

Getting that additional therapy in place is very important because, despite their best intentions, things at Early Intervention continue to be two steps forward, one step back.  A new instructional aide was added and we were finally going to begin getting our 4 hours a week of IA we have been waiting for. But then the girl never came back from vacation. She ended up extending her leave and now they are saying she won't be back until at least late August.  They owe us so much in comp hours it is ridiculous.  Remy and I are not going to be able to leave the house, we will be doing so much therapy! Anyway, it is obvious at this point that the therapy provided by the outside company is the only possible way we will get all those hours and I hope it will build a relationship with them that will continue on after Remy graduates out of EI next May.

That is a bunch of information, but the heart of the matter is that Remy is doing great. He is happy (sometimes the word happy doesn't even do justice to what he is!), he is learning all the time, and he has a few very special relationships in his life that he throws himself into whole-heartedly.

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