Tuesday, May 12, 2009

Bake Sale for Therapy?

Jonathan is such a puzzle to me.

The search for a proper diagnosis is on again. Or at least, I want it to be.

This fall Jonathan will be required to have another comprehensive evaluation by the school district. I am not against this, per se, but I really want this evaluation to be completely unbiased. And (no offence to the powers that be) I am afraid of individual biases or agendas getting in the way of what is Jonathan's true picture.

So, I decided I wanted to see if I could find a professional locally who can be truly objective, comprehensive, and deeply delve into Jonathan's unique picture. So I have started searching for someone locally who can really accomplish this. Without bias.

So, boldly, I called Dr. Stanley Greenspan's office at George Washington University Medical School in Maryland. Dr. Greenspan is the developer of the Floortime/DIR model, as well as being a international expert on developmental disorders, autism, sensory processing disorder, and other 'spectrum' issues. He is not only an expert, but his also extremely open to the idea of looking at the individual's own skills set versus 'fitting a child into a diagnosis'. Dr. Greenspan is one of the featured experts in the documentary Autistic-Like: Graham's Story. He is a guru!!!

I called his office largely because I wanted to see if there was someone who might be able to tell me of a local professional who is highly skilled and knowledgable, but not predisposed to call everything autism. I left a message and received a call back today. They really weren't able to give me any local professionals, but they did say that they had room in Dr G's schedule for June and July! WOW!

Ok, so this would be super wonderful cool! Of course, it is in Maryland. But, hey... we could call it a vacation. Go for a long weekend. Hit up D.C. But then came... the cost. $1800. Ouch. Can you say house payment? And they don't submit to insurance. Double Ouch. And in trying to figure out if insurance will pay anything, we are getting a very confusing run around. So, it probably won't be able to happen. I would love to be able to figure it out, money wise, but I am just not sure how. We already spend about $400 a month on his therapy!

In the meantime, we have also been referred to a SLP with extensive experience in Apraxia. She is local, which is good. Apparently there may ALSO be an insurance issue, because she is not at the current clinic we attend. But that is a fight I am willing to take on.

I am not sure why I care so much about diagnoses. I am not sure it matters... it isn't like there is a pill or therapy that "cures" autism or apraxia. But I guess I feel like if we can get to the root to his issues, we can build up from there.

Wish us luck as we navigate this path! Any insight or suggestions are welcome.



Crystal said...

I know lots of parents that found peace with a diagnosis - like you say, there's not a cure or anything, but it's nice to have a concrete name and know exactly what you are dealing with. I wish the Greenspan thing could work out, too. Insurance is soooo frustrating!

07-mom said...

Money or should I say lack of money is sooo frustrating. You want to get everything possible for your child, but money does hinder that. Insurance should pay for everything, within reason of course, no questions asked.

I'm in the same boat as you, but earlier into the process.

Hang in there,

Betsey (Matthew's mommy)

kate said...

Oh Pia, this is so frustrating. I totally understand why you would want a diagnosis--it would allow you to take a breath, take stock, and then figure out what is the most effective path to take to help your son. I'll be thinking about you on your journey.


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