Posted by: debstake | February 5, 2010

I Have Been Drafted!!


I rewatched the video done by Autism Speaks called “Autism Everyday”. It can be found HERE. I have seen this video when it first came out back in 2006. The video was made to educate the ignorant (the public at large) of what living with autism is like. It was designed so that the ignorant think twice before bitching about our children’s behaviors when they have melt downs in the  local Wal-Mart. It was designed to keep the judgements of the ignorant at bay. I don’t know how successful it was but I think it was a well done video none the less.

One of the mothers in this video put it better than I have ever heard when she said as parents we were drafted. I concur with this statement. And if you look at the definition of the word drafted it truly does fit. The definition can be found HERE. The minute definition of the word is: “the taking of supplies, forces, money, etc., from a given source.” And that definition hits the nail on its head when you are referring to autism. When you consider the amount of supplies (educational, medical, supplements and the like) it takes to raise and treat a child of autism the amount was (in 2007) a staggering $2.3 million dollars from diagnosis until death. Those supplies take the money that precious few of us in these economic trials can afford. And the forces are us the parents who refuse to settle for second best where our children are concerned. And while we refuse to settle our forces are taxed to the breaking point. Autism can turn solid relationships into train wrecks because of the isolation factor, because the ignorant just don’t understand and (in some cases) don’t care to learn what we, the families live with. None of us wanted to be involved in this war. None of us volunteered to have a child with autism. But yet here we are; trying to make the best of a horrendous situation.

After awhile though you get pretty thick skinned when it comes to the ignorant not being accepting of our children. For some of us it takes a long time, for others (like myself) who don’t give a damn what people think it happens more quickly. My attitude frankly is the very thing that has helped me survive the “hell days of autism”. My rational has been and continues to be; most of those people I won’t ever see again anyway so why should I worry about what they think. But like any adversity what you get from it can be a positive. What you make of it can be a positive. How you treat the autism and subsequently the individual with autism will have a MAJOR impact not only on yourself but on that of your loved one.

My biggest dream/prayer in the early days was that autism would be removed from my son and our lives. I thought God owed us this. I was wrong in more ways than I can count. Autism has been a uniting force for my family. Autism has actually saved my then shaky marriage, helped form a bond with my daughter that will never be broken and probably saved my soul to boot. In essence autism has been a win-win situation for me and mine. And for those in the immediate and extended family and friends who don’t bother with us anymore I have this to say: THOSE THAT MIND DON’T MATTER AND THOSE THAT MATTER DON’T MIND (Dr, Seuss was a great and wise man). Yeah, I have lost what I thought were good friendships. But my REAL friends and my REAL family are sticking with us. The list is short but I have always believed in quality over quantity anyway.

My next biggest dream/prayer was for JR to be able to speak to us. That dream has been addressed via his AAC device. It may not be his physical voice but it is none the less his thoughts, needs, wants, and emotions. Frankly, I don’t care if the voice comes from his voice box or one that is computer generated. As long as he can EFFECTIVELY and EFFICIENTLY communicate is all that matters.

Autism is like anything else folks. What you do with it will be the deciding factor of how smooth the journey is. For now our journey is seeing a smooth and quiet patch of road. That may change and we are prepared for it to change. As a family unit we are a united front who will face any adversity with our heads held high and we shall over come. Great things can come from adversity if you open your mind and heart to the journey.

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Responses

  1. Thank you Hua. I enjoy writing very much and this is my therapy. I am glad you find the information informative.

  2. It’s great how you’re there for your child and how hard you work to make others aware of what autism is, and how difficult it can make things. Your blog is really insightful and well done!


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