Tuesday, January 22, 2013

Constant focus on lack of ability


                 We are still in the waiting process to get Phillip into the local autism center and I have now learned he needs to register in the school district even at three years old. New concept for me as I thought we had more time for the school issue and not sure I am totally on board with it yet. Just simply going to the autism center every day is going to be a very new piece of his routine and he is going to need time to get used to it. There is no way to tell how that will mix him up at first but of course in the long run it’s going to be a wonderful thing for him.

                I don’t know what the district plan is and to be honest I have taken my time filling out the paperwork to send back. I have some mom anxiety kicking in and holding back a bit as far as the school district goes. Won’t be able to hold back to long because I know he has to go, but my mind is telling me one thing at a time or it’s going to get ugly. I hear the same thing from each person on the phone and it is this, “the more interaction the better, and the sooner the better’. True statement and it’s proven.

                There is a common approach with autism and it comes off as a rescue mission. As much intervention as possible and as fast as you can get it. Not a bad plan and necessary for progress but at the same time I have seen my son make huge progress in the last six months by going at an easy pace. I have a hard time with the attack rescue mission that is put into place and not because it doesn’t work, but because each case is not the same. So my brain asks why each case would need the same approach. We tried the attack approach in Montana with not the best services by the way and he regressed very quickly. It wasn’t working for him at that time and maybe it will now but then, it was a nightmare.

                In the last few weeks I have spoken to a few different people trying to arrange services for Phillip. Each time I tell them his diagnosis report from May of 2012 is not a completely accurate description of what is going on with him today. Still autistic of course but he has made real progress and back in May we weren’t getting much response from him at all but every time I say this I get slapped with doubt on the other end. Meaning they don’t seem to believe me because without that rescue mission in place he can’t possibly have progressed in the eyes of some therapists. After all that is what we are all told with autism.

                I have a huge desire to have him evaluated again but it’s not because he will not be autistic. it’s because we have spent the last year and a half filling out papers and answering questions in regard to what is not doing. An endless parade of feeling like our child is lacking ability and this is also a never ending psychological beating for a parent to face. Each time you check no instead of yes on a questionnaire or a doctor asks an age appropriate question you have to say no to, you sink a bit for your child. There has been a never ending focus on what he is not able to do and that alone is enough to put a parent in the fetal position crying in a corner at the end of the day, even if you know the system has an outline every kid on earth is fighting to keep up with.
               Most of my near break downs have not been from the challenge of autism, but the doubt and constant focus on what my child is not able to do kills me. Most, becuase I can't lie some of my difficult days have been just from the challenge of keeping up with my son mentally. Physically I am keeping up but mentally I have stay one step ahead and for a child who is considered disabled this is extremely challenging! Aside from the physical problems some families endure I have often wondered if autism is considered a disability simply because the general population is unable to grasp how the mind of autism works.

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