Dear Doctor

When we had Alice, all of the doctors in the hospital were incredibly negative with us. They told us that she had Down syndrome in a very depressing way. They did not congratulate us. They told us they were sorry. They acted like it was the end of the world for us. I would have given anything in that moment for one sliver of hope... but the doctors didn't give it.

As I've met and talked to so many other moms of kids with Down syndrome, I realize that 99% of them had the same experience. This is wrong, and it needs to stop.

Odhran Varney: How Medical Professionals Couldn't See Past A Diagnosis

“As he grew older and around 2 y/o he started to have trouble going to the toilet. He would scream in pain and it was glaringly obvious something wasn’t right. We took him to the doctors between the age of 2 and 4 at least 20 times. Always the same answer. He has Ds and constipation was a side effect. We placed our trust in the professionals. I will never forgive myself for that. After multiple trips to the hospital A&E and being made to feel like we were wasting their time. The look and lack of belief in what we were telling them was so evident. Our son was not the weight his age should have been but still it took us 2 years to get a serious appointment to have a look at the problem…”

DiscriminationLindsay RobertsonApril 15, 2019down syndrome, #deardoctor, discriminationComment

My interview with Jan Worthington, a trailblazer for the Down syndrome community

As soon as I heard the beginning of Jan’s story, I needed to know the rest. I was fascinated by the idea that she had been on this journey for so long—and especially that she chose to take her son with Down syndrome home in a time when the vast majority of kids born with Down syndrome were taken away shortly after birth and put into institutions.

When I met Jan, I think I asked her about a million questions. I wanted to know all about her journey with her son—how it was to raise him, what he’s like now and what advice she had for me as I started on my own journey raising a child with Down syndrome.