Thursday, March 6, 2014

What about the children who don't have a specific diagnosis?

As I sit writing this, Robbie is in the room with me. He is bouncing in his seat, wringing and flapping his hands, concentrating very hard on the "girls human Lego" , his sister has been building. He is also pretending to "hurt feet" as he plays with the chair and places it on his feet (lightly). The whole time he is scripting movie lines. He jumps from movie to movie. He gets up- spins in circles and sits back down. His last few reports home from school have said he is "very antsy."
Since it's March and we have been stuck inside for months- this is no surprise.  He has moderate Autism, Dyspraxia and is very sensory based. We know this. We have been through this. We know how to handle this.  At least right now, we know what he needs.
I remember when it was decided Robbie would be placed out of district. Rob and I went to look at the program Robbie eventually ended up in. I have to admit, it was scary. There were children who used devices to communicate. Some did awkward things with their hands, ( wringing and flapping.) Some spoke to themselves- (scripting- as I now know it.) They all had a paraprofessional or aide next to them. I was sad. I was also unsure if it was the "right" place for Robbie. Thankfully Robbie has a Dad who is a special education teacher. A Dad who cried right away when Robbie was diagnosed because he fully understood what moderate Autism means.  A Dad who knew this was the place for him.  A Dad who knew the research showed we needed to act now- with intensity.  We were lucky. Robbie has a specific diagnosis that allows  him to get services he needs and a Dad who knows about special needs. (And a Mom who is learning along the way.) No- it is still not easy. There are a lot of things we don't do because honestly- they are too hard and stressful for Robbie and the rest of his family. Of course it will only continue to become more challenging as Robbie approaches (gasp) "the teen years." But  that is a whole different topic.
What about the children who don't have a specific diagnosis? A (somewhat) specific road map. Parents who are doing their best to figure out where their child fits in- but there is no one to tell them. Honestly, because no one really knows. Autism, PDD-NOS ( Pervasive Developmental Disorder- Not Otherwise Specified),  Asperger syndrome, Apraxia, Dyspraxia, OCD, ADD, ADHD, Dyslexia, Auditory processing disorder, MD ( multiply disabled), LD (learning disabled),  and/or Developmental delays. I am sure there are more I am missing. How can a parent, who has a child with multiple diagnosis, know where to go? This is the segment of education that is lacking. Honestly though - it's hard to place blame anywhere. How is our school system supposed to keep up? There are so many different unique needs. There is never enough money.  Today is so different than it was 10, 20 or 30 years ago.
Once again- a reference to my favorite television program - Parenthood. The parents of Max- a pre teen with Asperger syndrome decide to start their own school, because they are not satisfied with the options for their son. How amazing - and (financially) fortunate they must be. If only we were all so lucky! For now there is just so much to learn. Hopefully it can be done fast enough, well enough - more than enough. That's what these children and families- need and deserve. A fair shot at helping their child to reach his or her potential- whatever that may be.

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