Monday, September 24, 2012

The waiting game

     Last week we had yet another evaluation. This one was at the Autism Clinic at our local children's hospital. I made the appointment back in April after we first started suspecting that Jake was on the spectrum. Since I wasn't thrilled with the thought of waiting almost 6 months for an evaluation, we had gone to 2 others (which I wrote about here and here), but I didn't feel that either evaluation was very thorough. As I've said before, I am not looking for a different diagnosis, but I would like a more in-depth eval and for someone to give me some more insight as to what is going on with Jake, and what they feel will help him the most.
    I was hoping that this appointment was going to be different, and that we'd walk away with some more insight. Seeing that it is an Autism clinic and that all they do is evaluations. I expected that we would go into a room with various toys/things for Jake to explore and that the doctors would observe how Jake interacted with the environment and with myself, and then they would come in and try to interact with him as well. Unfortunately this was not the case. This evaluation looked much like the others. It took place in a regular exam room, pretty much identical to a pediatrician's exam room. If your child is anything like mine, the doctor's office isn't exactly the his favorite place. It was obvious from the minute we entered that J wasn't very comfortable, and that the doctors weren't going to get a very good picture of what he is typically like. There really wasn't anything welcoming or inviting about the room, and the only toy was a lone truck. We saw a total of 3 doctors - a developmental pediatrician, a child neurologist, and child psychologist. It was pretty much the same as the evaluation we had at the developmental clinic back in May. Each doctor came in, asked me a bunch of questions, then sent in the next. Only one of them really tried to engage J or to do any activities with him, and even that was minimal. Afterwards I was told we would be contacted to set up an appointment to go over the results once the doctors met to go over everything, but that it could be a month or more.
    About a week later I received a referral for genetic testing. It said that once the clinic received the results they would make the appointment to go over the evaluation. We weren't given any sort of preliminary diagnosis or information. (As with the eval at the dev. clinic I didn't tell anyone about the PDD-NOS diagnosis in an effort to get an unbiased opinion.) I called the lab that does the genetic testing the next day. They don't have an appointment until December 17th. I asked how long it takes to get the results and was told 6-8 weeks. Add to that the month or more it will take to get an appointment to go over the results at the Autism clinic, and we're looking at February or March of next year before we would have any sort of diagnosis!!! Only at that point would we have been able to start the process of getting approved for ABA and the level of service J is currently receiving.
    We were first made aware of J's red flags and the possibility of an ASD in April 2012 when he was 18 months old. I made the call to set up the appointment the next day. If  our awesome service coordinator hadn't found us the place an hour a way that was able get us in back in May, J would be 2.5 years old before getting a diagnosis, and he would have missed out on almost a year of intensive therapy.  I find this to be very upsetting and frustrating. Everything you read about ASD talks about the importance of early and intensive intervention. It is heartbreaking to know that many children are missing out on these important opportunities due to wait lists and red tape. We are very fortunate to have access to the services we have right now. I thank our lucky stars every night for being assigned the coordinator we have been working with. He has done nothing but help me fight for what services I want for J, and so far has gotten everything approved.  He went out of his way to find us the place for the earlier eval, and he has listened to me ramble endlessly while trying to decide what therapies to choose.  I have heard many people complain about their service coordinators and about the trouble they are having getting services in place for their children. I understand how blessed we have been. This is why I say I heart my service coordinator. He will be coming by or J's 6 month EI re-eval on Wed. I might just have to control myself from giving him a bit fat kiss of thanks. I don't know where we'd be right now without him.

1 comment:

  1. I'm so glad you like your service coordinator- there is a lot at stake in terms of that being a productive, collaborative relationship, so it is wonderful you feel so secure with him!