Monday, June 2, 2014

You Wish What??????????




The good and bad about the internet is that things will spread like wildfire. The term viral was coined for a reason. If something is universally loved, or hated, the whole world will know in a matter of hours. So that's how my Facebook page became flooded with this book early this afternoon. It was originally posted to me by a friend I don't really see much anymore, but hold in high esteem. Her daughter is a cancer survivor. A beautiful, smart, and amazing girl about to graduate high school. A girl who has been through hell and back. As soon as I read it, I knew how bad my friend must be feeling. How totally disgusted and taken aback, because I felt the same way. The title of the book was; I Wish My Kids Had Cancer: A Family Surviving the Autism Epidemic.

Did you see that? Should we detail all that is wrong with this book title?

1) I Wish My Kids Had Cancer: Who in their right mind wishes that? Who in their right mind wants any kid, never mind their own kid, to go through cancer. I have seen my friends and family struggle with this hideous disease. Watched my father die from it. Are you serious????

2) A Family Surviving the Autism Epidemic: You are surviving an epidemic? Really? Yes I can not dispute Autism diagnosis is on the rise. My son is one of the one in seventy, or fifty, or whatever Autism Speaks is saying it is now. We live it day after day, after day. But to equate it to an epidemic disease? No!

Now before I go on let me say I have not read this book, only the reviews on Amazon. I am
thoroughly offended by the title and will not read it. I did read almost every one of the posted reviews, and from what I can tell, we have a self imposed pity party going on by a father who wants everyone to feel bad for him. Let me tell you why this is bad, because it is. This is a shocking title that insults every child and adult living with both Autism and cancer.

You are implying that all families of autistic kids feel like they are burdened with caring for their children.  That we are all in financial ruin, marital decline, and just all around ready to throw in the towel. I have news for you;

Don't speak for me!

This is the kind of rhetoric that will set our families back decades of activism and fighting. The casual observer who has no tie to autism, knows no autistic family, might think this is how we all feel. It is not. No matter what Autism Speaks may have you believe, Autism is not a disease the majority of us are trying to cure.  We are fighting for access, for equal opportunity, for better insurance coverage, and for understanding by the nurotypical community. But we love our families the way they are.

My life is not easy. But it's nothing compared to what my son has to navigate. Our family is strong. I fight for what he needs, and love him and celebrate him with all my heart. Autism is part of him. Take his autism away and you change who he fundamentally is. His caring loving and sometimes quirky nature. Autism is a spectrum. I have a very good friend who's daughter is living in institutionalized care because her autism is that advanced. She takes her daughter home every weekend, and loves and celebrates her. She is non verbal and wheelchair bound. And one of the most beautiful young woman I have ever met. I have another friend who's five year old son gains leaps and bounds everyday. I have watched him go from non verbal, to describing everything he sees. His potential is unlimited. My son is high functioning. But struggles with social skills and learning and emotional disabilities. What we have in common on this huge spectrum is the love we share for our children. Ask any one of these families if their child is a burden. They would say no in a heart beat. We are blessed to love and care for these special souls.

Ask any family of a cancer patient. They love and celebrate their families as well. Their emotional and financial total is huge as well. Maybe even bigger. Would they wish their burden on any one of us? I highly doubt it. I have lived through both in my family.

The point in my ramblings is this book does a disservice to both groups. I will not argue that more funding and help I needed for those in the autism community and the mental health community at large. I fight for this on a daily basis. But for the author to think he would get more help and understanding with a cancer diagnosis? I just can't fathom. Move to another state. Advocate for your children better. Join a support group, get in counseling, and surround yourself with supportive people. My life is nothing like I imagined. I went through a separation, a foreclosure, all that stuff. But it could have happened with or without an autistic child.

The bottom line is, when his children grow up and see this book, how will he explain it to them?



***Editor's note: I am not justifying the author with a link to this book. I have not read it, and I will not read it. It can be found on Amazon if you are so inclined. ***

2 comments:

  1. I'm so glad you wrote this. I can't imagine why anyone, especially a parent, would write such a book with such a horrible title.

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    1. Thanks for stopping by and reading Roxy. <3

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