living with an Asperger's child

(insert long sigh that will precede this monologue)

I must say to you rather candidly that it is very easy for me to live in a state of denial about the fact that my son has Asperger's Syndrome. When I am in denial  - choosing to ignore the situation, and selectively forget about what needs to be done, things seem "normal". Just letting him do what he wants, fuel his narrow obsessions and cope with his eccentricities is normal to us. Frankly, it is extremely overwhelming to me - all that needs to be done to help him, coupled with the daily struggles we face, the trial and error of parenting, the learning process about what we CAN change in him and what we just need to accept, the financial needs, the frustration we feel... I could go on and on.

There are so many next steps for us with regard to what we recently learned about Dakota, and in conjunction with where we are in our life - in a state of upheaval and transition - it's so easy to shut down. Lately I have been funneling all my energy into trying to get some income flowing that since his "diagnosis" we haven't really spent a lot of energy trying to figure out how to get therapy down at Brain Balance funded. It is SO expensive, but I believe we can get it done, it will just take some shifting and changing and creativity. Meanwhile, we are swirling down the proverbial financial drain in all other areas of our life. So it is easy to lose focus, you see?

I was thinking this morning about one of the first major revelations that I had concerning Dakota. I was pulling into the BJ's parking lot listening to NPR's Weekend Edition on a cool early Spring Saturday morning in 2010 and on comes a story on Red Sox pitcher Curt Schilling's son Grant who has Asperger's Syndrome and the book he and his wife wrote about it, called "The Best Kind of Different". 

You can read the transcript or listen to the story HERE....

And I strongly suggest you do.

Because as I sat in my old '89 Suburban listening to his mother and father describe his "symptoms", the hair on my very neck stood on end. It was almost as if someone had stepped into our home and had been observing Dakota's behavior and decided to do a story about it on NPR. I couldn't believe it. Moreover, I couldn't believe someone so specifically described my son's behavior, and there was a REASON for it... it wasn't something that we could discipline him out of, no matter how hard we tried, that was it - this was just HIM.

That moment was the start of a looong process. I had scheduled for him to be evaluated down at the Marcus Institute a few months later, but got cold feet when I realized that once he was "labeled" and Asperger's was on his health record, that he may be un-insurable in the future due to the fact that he takes medication. Desperation led us to taking him off gluten and casein, and eventually to Brain Balance where we received a very comprehensive neuro-psych review that revealed the extent of his Asperger's.

We have so much to learn. And so much to do.

Blogging about this helps me to not "stuff" and to remember to voice my feelings, frustrations and be accountable to something. Even if it is a web audience that I can't see, touch or feel.

Listen to that NPR story I shared. You'll be listening to a description of my son, and hopefully it will help you, the reader, connect with where we're coming from as we share about living with a child with Asperger's.

Thanks for reading.

Brooke