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Why I Advocate for My Son With Down Syndrome, Even With the Pediatrician

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We walked into the pediatrician’s office for a routine appointment. The pediatrician barely said hello before asking me how Harry was doing and if he was “thriving.” Of course, I always think my son is doing amazingly, but there was something in the tone of the doctor’s voice that made me wonder if he felt different. Perhaps he worried I was in denial of my son’s Down syndrome diagnosis —  a mum with rose-tinted glasses, attributing a child’s grunting as talking, or arms flailing around as a purposeful wave.

When he asked questions, I felt it was with a tentative tone which came across to me as negative assumptions:

“Is he making any attempt to try and roll at all yet?”

“Does he try to make any little sounds?”

Why not just, “can he roll over?” “is he babbling?” He seemed shocked when I said my son was rolling and babbling — after which, Harry proceeded to be a little chatterbox and I’d never felt more proud. The whole appointment felt this way to me. I left feeling angry because I wondered if the doctor had presumed my son wouldn’t be doing the things a “typical” baby of his age would be doing because he has Down syndrome.

When I later received a letter from the pediatrician reviewing our meeting, my anger felt justified. I barely made it past the first line of the pediatrician’s letter, which stated, “Problem: Down syndrome.”

Wait a minute… what?

Firstly, Down syndrome itself is not a “problem.” It can lead to medical and developmental issues, but it is not in itself a “problem.” Secondly, to word this in such a negative way feels insensitive and insulting to my son. I believe it also reflects upon the outdated attitude of some health-care professionals towards Down syndrome.

I was saddened that this happened, not only for Harry to have been labelled a “problem,” but also because some of us parents might be more sensitive to this issue. Some new parents will be struggling to come to terms with a diagnosis of Down syndrome and such negative terminology could make their acceptance harder.

We received an apology from the pediatrician, as well as an assurance this wouldn’t happen to anyone else. I will always fight for Harry to be seen as equal. He is an incredible child, with much to show the world — even if sometimes it takes him a little longer to do it.

Like Alan Alda said, “Your assumptions are your windows on the world. Scrub them off every once in awhile, or the light won’t come in.”

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Originally published: March 16, 2017
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