Sunday, November 9, 2014

The 'We Sort of got a Diagnosis' Update

Long time, no posts! My netbook died.  That's really no excuse because we have a desktop, but after that happened I stopped blogging and enjoyed the summer. A lot has happened with my 4yr old 'G.' We got the diagnosis of 'Other Specified Neurodevelopmental Disorder' for him which I was happy with at the time. At least it was something. The psychologist didn't give me any tips for potty training, but he did support my efforts. He agreed that there was not going to be a magic potty training method for him. It was going to take months of hard work. He said that G's diagnosis will probably change as he gets older.  He thought G definitely was not on the spectrum, but might develop generalized anxiety disorder or ADHD in the future (those disorders are not diagnosed at such a young age).

At first I was really happy with this because we could start occupational therapy and get health insurance to pay for pullups.
Those were two things that I really needed to happen, so any kind of a diagnosis was a victory. But, after we got into therapy it became apparent that G's sensory processing issues were more severe than I had previously considered. They seem to really contribute to how he handles situations that generally cause him anxiety. For example, trick or treating is something I wasn't sure he was going to be able to do this year, but with sensory therapy he did awesome.

The evaluation center I chose simply didn't seem to have the capability of diagnosing G. I still feel very strongly that he has hypotonia and so many professionals have agreed.  The evaluation center and the psychologist there agreed he probably had it, but that has to be diagnosed by an MD and they only had nurse practitioners and psychologists at the evaluation so it couldn't be diagnosed. They also couldn't diagnose sensory processing disorder because they only diagnose disorders classified in the DSM. So, while I know he has sensory issues, I don't know if he has Sensory Processing Disorder or not. They claimed that since he only completely bombed 2 out of the 5 tests for autism that he doesn't have it. It's great he totally passed 3 of the categories, but he totally failed the other 2. This didn't really mean a lot to me until I saw the pediatrician after the final report came out and the Ped said he was still very suspicious of autism and didn't think we should rule it out at all. Really, I just chose the wrong evaluation center. I was hoping to get a quicker result by avoiding our University Hospital with really long wait times and that was the wrong choice.

Our pediatrician really wants us to start over and get re-evaluated at the university, but I'm not sure what we have to gain by that.  We have decided not to send G to kindergarten in the public school system next year. It would be nearly impossible to get him an IEP without a more specific diagnosis, and his small private church school goes up to 2nd grade. We've decided he will stay there as long as we can afford it. It's expensive, but you just can't beat the class size of less than 10 kids in a class. This year the kindergarten and 1st grade have less than 10 kids combined!

He is doing occupational therapy and absolutely loves it! Our current diagnosis is good enough for insurance to pay for therapy so we don't need an evaluation to get that.  Other special needs moms have really pushed me to get the evaluation because knowledge is power and I could help him more if I know what he has, but the process is so stressful for us. I already have a great OT to ask questions and a multitude of facebook groups for special needs parents. I'm just not ready to drag us through another eval when it's not necessary. So we're happily watching his improvements and waiting to see if our situation changes.  I'm open to getting another evaluation done, just not right now.

G is doing really doing great. He's now fully potty trained. HOORAY! That definitely will be getting it's own post soon. He had a rough start to preK, but now he loves it and he has no accommodations at school this year. We started occupational therapy in September and it boosted his confidence immediately. He has really blossomed and life has gotten so much easier in the past few months. Perfect time to start trying for another baby ;)

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