Friday, January 25, 2013

Why is it?

Recently we have the opportunity to order t-shirts to support the new Rasopathy Foundation. I love the new logo that proudly reads "I Love Somebody with Noonan Syndrome".  It caused me to get thinking that maybe I needed to get another t-shirt that in honor of my children with Fetal Alcohol Spectrum Disorders.

I searched, I found I love somebody with autism, I found almost every other syndrome or disorder. But
when I searched for fetal alcohol, all that came up were drinking t-shirts. Enough said....

Having Fetal Alcohol seems to be a dirty or shame based syndrome.  Parents and families proudly wear their autism tshirts, down syndrome tshirts, all sorts of genetic syndrome or disability tshirts, but would anyone wear I love somebody with Fetal Alcohol Syndrome in public?  I would. I am proud of my children, but I have an advantage, I did not cause my children's lifelong disability.  I understand why some parents will focus on their children's developmental differences to get special help instead of admitting where it came from, because of the blame society places on them.

It is much more accepted to have autism spectrum disorders, ADHD, bipolar disorder than to have Fetal Alcohol Syndrome or any of the FASD spectrum. As long as it is no ones fault.  But it is not my children's fault, they were victims, victims of prenatal alcohol exposure. They have no voice, no rights to be born healthy. They were just a fetus and a fetus has no rights. But my children will pay a life-long price.

Tonight I was just thinking....  and I will proudly wear an "I love somebody with Fetal Alcohol Spectrum Disorders".   Who will join me?  First I need to get Jodee to make a logo and then get some t-shirts printed up. Maybe it will be the first step in destigmatizing FASD.

I bought Becca her own shirt to proudly proclaim "Rockin my Designer Genes". Maybe someday my children with FASD will be able to proudly wear their own shirts and be understood by our society without shame.

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