Tuesday, April 20, 2010

Extra baggage

A large part of our HBOT journey has been meeting and connecting with so many other parents and children, all looking outside the box, to give their children a better life, in whatever form that is.  Monday I met a gentleman and his daughter in the waiting room.  She was about 10 years old and has Autism.  That day, I took Walker by myself and when its just him and I we use his adaptive stroller. The man commented on what a nice stroller is was and I went on a commentary about how hard it is to carry him around these days and that I have to start really using his equipment..blah..blah..blah....

He just smiled, and gave a little chuckle. My face must have shown my confusion, because he apologized and told me that he is still carrying around his daughter because she has outgrown her wheel chair.  I was marveled!  She has to be at least 75 lbs!  I didn't want to be too obtrusive and ask questions,but couldn't help but give some reference to our TRAID program  here in Orange County. I also gave kudos to my social worker and therapeutic team, (wait, did I say mine? I meant Walker's).  His daughter was called into the office and we said our polite "take cares" and "nice talking with you" and he flung her up on his shoulder and carried her into see the doctor. 

It just made me think about our situation and wonder how many children out there do not have what they need? Was this girl being carried around because of insurance issues? because they did not have the right resources to tap into? or because it was just easier on some level for him to carry her around than deal with a chair and then transportation and all that comes with it?I just felt horrible for both of them, for the dad who is lugging a 75lb daughter around and for the girl who has no sense of independence.

It also makes me nervous about leaving the comfort of Early Intervention and being in the real world of disabilities. We have to start thinking long term, in regards to what Walker will need and how to best prepare ourselves for that.  I don't expect to have a custom built home, but I certainly don't want to be lugging him around at 75 or 100lbs! 

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