Horrified

I am the mother of a daughter who has special needs. Haley has a genetic condition called Sotos. For her that means that she, among other things, has an intellectual disability. Does this mean that she is stupid? No. Does this mean that it takes her longer to understand concepts and learn skills? Yes. Haley requires extra supports, therapy, a thoughtfully considered environment that limits prolonged exposure to excessive sensory stimulation and patients. A lot of patients. If I am being honest here, which I am trying to be, it is physically and emotionally easier to parent my neurotypical son. Does this mean that I wish she were different? Absolutely not. 

Haley is incredible. She has a sweet disposition that is immediately endearing. To be around Haley is to be around a girl who experiences everything in full force. Happiness, anger, curiosity and frustration are full bodied experiences that she draws you in to experience with her. She doesn't hold back. She is full of energy and, at times, appears to never stop moving. She is athletic, loves to dance and has an insatiable appetite for knowledge. She wants to look at, feel and learn about everything around her. 

She also works harder than any kid I have ever met. Want to hear her count to 3? She will proudly show you her abilities. Please allow her to show off a bit because she has worked for 2 years to get to the number 3. That didn't come easily, she fought for it. It begs the question: what skill have I recently spent 2 years trying to learn? Personally, I usually get frustrated and walk away. She has also recently made huge strides in controlling behavioral outbursts. I wish I could claim credit for this, but it is her hard work and perseverance that makes these things happen. 

As her mother it is my job to hope. The teachers, therapists and doctors are supposed to give me reality based observations, diagnose her conditions, treat her and educate our family about how to best support Haley. My job is to believe in her, advocate for her, love her and stand by her side. 

I clearly remember some of the conversations that we had with people leading up to the adoption of the twins. I was startled, angered and horrified when it was either implied or blatantly asked - why are you adopting damaged goods? We fostered the twins for just under 2 years before they became legally free. As soon as we were able we adopted them to make legally true what was already in our hearts. We are a family. I was asked by social workers from the state why I was choosing to adopt a special needs child, heavily implying that I must be making some sort of mistake. Former friends implied that I must be a saint to take on this "burden" when I didn't have to. Those were the last times we spoke. Complete strangers asked why we made this decision. I couldn't believe it. Of course I was adopting the twins, they are my children. Would someone who had given birth to a baby who has special needs turn their back on their child? 

I am telling you this because I have recently read something that has horrified me more than those statements and implications that my daughter wasn't worth adopting. Here is, at the very least, a doctor and social worker who is saying that a child with special needs is not worth saving. That because the child has an intellectual disability she does not deserve a chance at life. This is possibly a hospital wide policy, but at this time that is unclear to me. 

http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

My heart hurts, anger is burning in my gut and tears come to my eyes every time I think of this story. How is this possible? How can a doctor make a decision about an assumed quality of life? And the question that scares me more than anything... What if this was Haley?