Right now, we are not seeing significant progress in our goals for Zachary. His pointing is still somewhat limited, his vocabulary is limited. However, a lot of his behavior is OK. I think this is a change up from where he was before.
It's so hard for me to determine anything about Zach and where he stands relative to neurotypical kids and relative to children with autism. Sophia being a bit of an exceptional child with her own unique characteristics is a hard comparison. I read about other kids on the spectrum who seem to have more symptoms, and at deeper levels than Zach - less social engagement, more sensory issues, non-verbal, and rigid patterns of behavior. I read about self injurious behavior (head banging, biting self), children who do not want to be held or touched, who cannot deviate from schedule. I am thankful for the fact that Zach is not this severe in his symptoms. Will his development improve or is there a chance he could exhibit some of these characteristics? Only time will tell.
We are constantly told not to compare our children to others, to be grateful for the progress our children make relative to themselves. I guess I am not always capable of that. I have met other children who have progressed more rapidly and I am genuinely happy for them and their families, but I will not lie that it doesn't bring about some anxiety for me. If I were to say it doesn't, I would by lying to you and myself. I don't know if one day this will change, but that is how it is for now.
I go through different phases of attitude towards what we are faced with. I go through the joy of my beautiful son and his smile, to the fear of what will be in his future. The joy of seeing him with family who accept him and take him on a trip to to the fear of when he is not in my presence how others, strangers, might treat him. The joy of hope after reading someone's encouragement of treatment and recovery of their child, the fear that we will, like countless others, fight for services, get lawyers involved, and the treatments we fought so vehemently for, that made our lives miserable, will not be effective for him. Every day I have to deal with professionals who are far more educated and experienced than I am. More often than not, they are humble and helpful people. However, than there are those who treat me like I am a child myself, with no ability to understand the nature of what is going on, let alone be considered when making decisions of my son's future, and possibly only hope of leading a independent life.
Right now, I am feeling helpless. We are in a bit of a straight with the school district who wants to see Zach fail in order to provide him services outside his preschool. The county representative also indicated that they will try to force us into a program an hour and a half away from here, so as to avoid financing a therapist in our home.
Perhaps I am incapapble of the decisions before me. But I have to make them nonetheless. All the experts in the world will never have the intensity of interest in the subject matter that I have. PhDs, EdDs, MSWs, SLP, BCBA, MSE Spec Ed don't have anything on MOM.
Wish we could get out of these doldrums. Is it the sunlight lessening, the rain, the never ending fights, Mom's upcoming surgery, a family member's death?
I always liked the line that history is written by the winners, and this seems no different when it comes to autism treatment literature. I have read several books written by mother's who through various means, 'recovered' their children who have autism. I know not everyone recovers, but who wants to read about the other? I was so glad to finally read an essay by a mother whose twins did not recover (or at least not at the time of the writing of her essay) yet still seemed to be able to be inspirational. It was very real.
1 comment:
Love the picture - Sophia looks so proud. I hope that you will be able to share many "normal" moments together with Zach regardless of his progress. I keep sending positive thoughts to NY!
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