Monday, October 21, 2013

The Ugly Side of Autism

When you sit in the cold, emotionless doctors office and hear the words that your child has autism one can never prepare themselves for what the future holds. After you hear the words and realize how easily it flowed out of a doctors mouth who displayed not one ounce of empathy, one can never prepare themselves for what the future holds.

Here you are, 14 1/2 months post diagnosis and on some days you feel you have taken three steps forward and four backwards. After countless doctor appointments, after countless therapy appointments, after countless insurance calls, one can never prepare themselves for what the future holds.  Once you embrace those days of ectasy they are all too soon shattered by days of torment.

We live in a society where only the flamboyant side of ANYTHING makes the news. For instance, we hear repeatedly about all the great therapies for children with autism and how it is so marvelous to have a child with autism this day of age than it was forty plus years ago. Really?? Then why not display the true ugly side of autism that most parents are stuck in?? How can any parent prepare themselves for this when it is hidden from society?

A parent is given a piece of paper stating to get your child enrolled in 40 hours of therapy, preferably ABA for most of it. What does a parent do? They get their child in therapy!!!! That is what is needed and the research is all over the news on how wonderful it is and how it can make your child 's autism go from severe to mild in a few years. Nonetheless, those dreams are shattered by insurance companies who call you while you are waiting to see yet another specialist for your child. You pick up the phone only to hear the voice on the other end stating that your child's therapy is no longer covered this year by insurance because your child has reached the max limit. How is this possible??? How can you deny my child therapy that is medically necessary in order for him to live a functional life but you are telling me he can't receive it anymore? No one can prepare themselves for the heartache, the frustration, the depression, the rage, the tears and tears that flow constantly! Nothing can prepare you for the ugly side of the healthcare system. No one can prepare you for anything!!! Why???? We live in a society where we want to just talk about the good and not the ugly.
No one can prepare you at all! What do you do? You hang up the phone, put on that freaking fake smile you have had on your face since the day you knew your child had autism. You sit through the doctor appointment talking about how your child has had chronic diarrhea his whole life, you plead to the doctor to help your child. Please help his leaky gut!!!All I am asking you is to help him with just this one small, minute problem. Can the doctor help? Unfortunately I don't think so. Instead you hear how he will out grow possibly by the age of five if it is just "Toddler Diarrhea". And if its not just toddler diarrhea????? It's just part of autism.

Well thank you very much! I can't help my child with therapies because insurance says no.I can't help my child communicate and understand language because insurance puts a limit, I can't help my child sleep because no doctor is yet to find the right medication for him, I can't help my child with his chronic diarrhea because it is just part of it. Why not discuss this on the next segment of autism on foxnews?? That would just be too repugnant. Instead lets talk about the super-excellent side of these research based therapies that are proven to help but not tell the parents and society that insurance puts a limit that only covers 10% of the required amount.

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