I hate to have to fight for what Dylan needs and deserves. I HATE confrontation. I usually end up getting all red and flustered. I am feeling this way because last week Dylan had his six month evaluation at California Children's Services where he receives additional and much needed therapy on top of his therapy provided by the Regional Center. The great thing about CCS is that they provide therapy services and equipment for the child until age 21, unlike Regional Center that ends at age 3. The eval was conducted by a Pediatrician, Social Worker and an OT.
It started off by the doc saying "so he is crawling and toddling around furniture now, right?" I hate when this happens because instead of me going over all that Dylan has accomplished I feel like all I am saying is no, no, no. We talked for a few more minutes and then he did his physical exam and told me that Dylan barely qualifies for therapy services because he does not have high tone but low tone and to not be surprised if he gets dropped next year! I was shocked and didn't know what to say except "can't you see that he needs OT and PT desperately?" Which he replied "yes, but hypotonia is not a covered diagnosis." All I could say was "are you kidding me!?" I guess the state of California totally disregards a rare chromosomal disorder that causes multiple physical and mental delays because I was also told that they didn't know how he even got approved in the first place.
By now I was already getting flushed and upset so I decided to see what I could get while he has CCS. I told them I wanted to get Dylan a gait trainer, a much needed piece of equipment that will help him learn how to walk. I was told that CCS will only approve a gait trainer if Dylan is taking "purposeful steps," but they could get me a wheelchair. A WHEELCHAIR!!! NO! Dylan does not need a wheelchair he NEEDS A GAIT TRAINER! (Even writing this now I can feel the steam rising from my head.) Why, oh why must I fight for what Dylan needs? Is this how it is always going to be? I hate it! Now don't get me wrong, I have not given up and soon I will be posting a picture of Dylan in his gait trainer.
Now would you not approve a gait trainer for this beautiful little boy who is standing so strong, but instead like to see him in a wheelchair?
Yeah, I didn't think so.
To end this post on a happy note here are some pics and a video from this weekend. It's not the best video because the camera's battery was low but Dylan loved the water slide!
Luke - 7 months old
Not the best pic but you can still see Dylan's very happy face going down the slide with Hailey