The Day I Became an Advocate for My Child
On September 11, 2014, I watched as my 22-month-old daughter was held down by five hospital staff and wrapped in two blankets like a burrito to have an EEG. She screamed and cried and tears fell down her face like she was being hurt. They kept saying, “This doesn’t hurt her.”
Obviously they didn’t get the memo– she’s autistic and sensory-sensitive. Just having someone touch her hurts her; clothes hurt her, putting socks, shoes and a coat on hurts her. They were hurting her.
As I died inside.
I called out to her, “Zoey, look at Mommy, I’m here… I’m here, I love you… you’re OK.”
She didn’t look for me or look at me once; she just stared out into the room and screamed and tears fell from her face.
If this wasn’t bad enough, the doctor who was on the floor that day then came running into the room and screamed, “Stop! This can’t happen today. We don’t have a crib.”
Any composure I may have had quickly vanished. I broke down, and I cried, and I said “No. I will not let you do this to my baby again. I am not leaving. I was promised a crib. Go find a crib, and if you can’t, then I will sleep on the floor and hold her bed to make sure she does not fall out… but I am not leaving.”
This all happened while they were attaching the flat metal discs to her head — and they only had half of them on.
We had this procedure scheduled the day she was diagnosed, and I had a child advocate from the hospital in constant contact with me. I’d explained that Zoey needed a crib, and I was told we would have one.
All I wanted to do was hold her. She wouldn’t let me.
A nice woman who visits the hospital with her dog every month stopped in our room and asked if my daughter would like a visit, and I said sure.
This is the moment when any amount of denial I had quickly vanished.
I watched as this beautiful yellow lab approached the bed, my daughter didn’t look up or even move. I watched as this big dog jumped up on my daughter’s hospital bed and start eating the cereal around her feet. Again, my daughter didn’t look up or even flinch. My 22-month-old nonverbal daughter was in her own little world; she was on sensory overload and traumatized, and this dog wasn’t going to pull her out and neither was a hug from her Mommy.
I swear, a little piece of me died that day. And I promised, never again. This is why I fight. This is why I advocate for autism awareness. I do it all for her.
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