When a Health Professional Undermined My Daughter's Disability
I’ve spent over a year trying to make it to a medical appointment. But as a single parent to a child with fetal alcohol spectrum disorder (FASD) it rarely makes the top of my priority list. A change in routine and a new building with a busy waiting area doesn’t feel worth the fallout to either of us, so I kept procrastinating.
Last week I finally made it. I planned well, picked a day when my daughter was agreeable and went prepared. I couldn’t make an appointment at a time of day that worked for us so I attended a drop-in session. I got there as it opened, but there were already 10 people ahead of us.
It was noisy and busy and eventually I had to say we couldn’t wait any longer and they managed to fit us in. I was then asked if my child was deaf as she had ear defenders on and I was signing to her. I explained she had FASD and the health professional proceeded to tell me she had a relative with that condition but he “had real problems unlike your daughter.”
I get it. I really do. My child was sitting there in silence cuddling me. My child’s disability isn’t obvious even to those who know her well. But I could feel her anxiety, I could see her facial expression, her body language. I knew she was panicking and stressed and when we left she would show her feelings.
And in that moment I felt beaten down, once again. It was another person making a judgement based on one experience. I’ve been told in the last few years I’m exaggerating, imagining it, that I don’t know what normal children are like, I’m not objective, I shouldn’t be claiming disability support and using so many health services. I’ve even been told the problem is “I know too much about my daughters diagnosis.”
Parenting a child with disabilities is hard. Being judged on her needs is harder. Do I wish she had more complex issues? No. I’m proud of how she is thriving and dealing with her challenges.
But I do wish people got it. That they could see an overly compliant child as someone who is shutting down due to over-stimulation. That she says yes to everything because she thinks it’s the right answer. That she is not a neurotypical 3-year-old. That when I say she has sensory issues it doesn’t always mean a child who can’t sit down. And really, I just wish people believed me because I’m an honest person.
I keep on battling every day. Most of the time I try to educate professionals so the next parent sitting there gets a different response. But that day I just sat there and took it. I tried to list my daughter’s medical treatments as proof she had issues but it came out so pathetically we just moved on. I held my daughter close.
I want her to grow up in a world where FASD or disability isn’t seen as a weakness. Where her diagnosis is taken as fact and doesn’t need to be justified. Where she is accepted for the amazing girl she is who overcomes so much. I want a professional who sees her thriving as proof that early intervention can help kids with her condition, rather than the assumption she wasn’t really disabled to begin with.
I choose to believe that professional meant well. But I wish people understood that an obvious disability doesn’t minimize an invisible one.
In that moment I was beaten. But next time I will be ready.
For more information on FASD check out https://fasd-uk.net.
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