“You know your child best.” “You are your child’s biggest advocate.” These are two sentences I hear so often from doctors, therapists, and nurses as they encourage me to advocate for my daughter with Angelman Syndrome.
Recently, my daughter fell and hit her head. She was pushing her walker backwards and fell over it and landed on her forehead. She immediately had a goose egg and was screaming. L doesn’t express her pain the same way that her sister or brother would. She could kick her high chair for hours causing bruises and callouses on her toes and shins and never show the pain it’s causing. She also has gone through ear infections, vomiting spells, and high fevers with little crying and lots of laughter. She seemed fine a few hours later still upset but close to her usual self. I took her to the ER just to be on the safe side. Due to her inability to sit still we would have to sedate for a CT scan. So since she was acting fine we decided to take the watch and see method. The next day she was irritable, lethargic, and upset. Her respite provider, ABA therapist, and I all knew something was up. She had a follow up appointment and I told them she is not acting normal. She screamed throughout the entire checkup. The Dr said well if she starts acting different than normal you should take her for a sedated head CT. I said this isn’t normal. She pulled L’s Developmental Ped into the room. He says the same thing “if she starts acting different than normal take her for a sedated head CT’. Me even louder “this is NOT normal should I take her now?” He responded again, “well only if she starts acting different than normal” and as he sort of laughed responded ” I mean do you want her to have a head CT? At this point a brain bleed would be highly unlikely it’s been over 24 hours”. My response was of course I don’t want her to have a head CT but this is not normal.
I left. Frustrated. They must think I’m insane.. I didn’t want to sedate her but NO ONE was listening. They tell me all the time I’m her biggest advocate but when she is not acting like her happy bubbly self they think I’m insane to be worried. A week later we took her to a new neurologist in a different state we explained everything that happened and he said, “she had a concussion, no one explained that to you?” And no one did. I was laughed at and probably made fun of after I left as being a crazy mom who just wants to do crazy procedures. When all I wanted was a reason for why she was acting so off after a head injury.
This happens too often for parents of children and adults with different needs. We know better than anyone else when something is wrong with our child. I could name off time and time again when I knew something was wrong and I was ignored or laughed at. I hope and pray constantly that there is a change in how care givers are treated. That actions are met with the words I hear all the time, “you are your their biggest advocate”.