Our story: nothing has changed about Down syndrome, except how the world treats those with it

IMG_1596This past Saturday, our family got to experience something that would have been unimaginable when I was born. It shows nothing has changed about Down syndrome, except the way the world treats those with Down syndrome.

Saturday was an incredible day for our daughter, Juliet. Loyal readers know that my daughter, Juliet, has Down syndrome. She is finishing repeating 3d grade at our local public elementary school, where she is fully-included.

As part of that inclusion, Juliet submitted a photograph in the annual PTA Reflections contest. After winning at the school and then district level, her submission was entered at the state level, where she again won. This time an Award of Excellence, finishing second only to the submission that was selected to compete at the National level. She received her award in our state capital and afterwards exclaimed, “Look Daddy: I won a medal!”

Juliet & her winning photograph of her brother

Juliet & her winning photograph of her brother

But that was just the first honor of an eventful Saturday.

That evening, Juliet performed in her first dance recital. Below is a video of her class dancing to a version of “Pop Goes the Weasel” (Juliet is the second one from the left):

Afterwards, Juliet thanked her teacher Ms. Julie. She told her mom, “I had to concentrate” and “the older girls helped me with my skirt” for her costume. Each time, before her class was to exit the stage, Juliet took an extra second to be  the last one off so she could wave to the audience and take a bow. The crowd enjoyed her hamming it up.

In attendance were my wife and son, my mother and Juliet’s Nana, and then several good friends: Ms. Nicole, Juliet’s in-classroom aide for kindergarten through 2nd grade; Ms. Megan and her daughter Maerose, neighbors who also attend the same elementary school; and, the O’Dea family, former neighbors of ours.

L-R: Your author, Megan, James, Nana, Juliet, Ms. Nicole, my wife, Brendan & Jennifer O'Dea

L-R: Your author, Megan, James, Nana, Juliet, Ms. Nicole, my wife, Brendan & Jennifer O’Dea

No doubt there could have been something else each of them could have been doing on a Saturday night. But they all devoted their evening to attending a children’s dance recital to show their support for Juliet. More than one of us were wiping tears of joy while watching Juliet hit her mark, in time, and loving every minute of it.

It was a wonderful day, with my daughter being honored and shown love by so many.

And when I was born, this would have been unimaginable for an 9-year old with Down syndrome.

In 1973, the year I was born, inclusion in schools was only in its beginning stages, and wouldn’t be federally mandated for several more years. Inclusion in the community was still the exception and not the rule.

Instead, when a child with Down syndrome was born, parents were asked if they planned on taking their baby home with them. Still, the default was exclusion, institutionalization, and ostracization.

But forty years later, here was my daughter winning an award at the state level with other schoolchildren, and being included in a dance recital with family and friends from school and the neighborhood cheering her on.

It’s important to note:

Nothing changed about Down syndrome–just the way the world treated those with Down syndrome.

Juliet is like most children who are born with Down syndrome–not having those other attendant health concerns. She “just” has Down syndrome, an extra 21st Chromosome in every one of her cells. And, nothing has changed about the genetic condition. A child born with Down syndrome 40 years ago, or 100 years ago, or half a millennia ago had an extra 21st Chromosome in each of his or her cells just like Juliet. But, consider what has changed.

Only until the most recent generations, children with Down syndrome were not expected to read, write, attend school, be included with other children, be raised in the home, or be included in the community. And guess what? They languished. They atrophied. They didn’t read or write or attend school, or interact with other children, or be included in the community. And, so, the world’s vision of those with Down syndrome were children who couldn’t attend school or be included.

Then that all changed.

Parents like Jon Will’s and others demanded that their child be treated like every other child. Be loved, attend school, and be involved in their community. And, guess what? The children with Down syndrome, who couldn’t read or write, started to read and write. Who couldn’t attend school, started attending school. And, who couldn’t interact with other children, began to interact with other children. And they flourished.

Individuals with Down syndrome could have been honored 40 years ago and included in a dance class, but they weren’t. They could have been, but the world didn’t let them.

The world used to not let a lot of things happen that happened Saturday night.

In the opening number, a White girl and a girl of Asian descent performed together–that used to not happen.

Me being raised Protestant may not have mingled with the strong, Irish Catholic O’Dea family.

Ms. Nicole, a beautiful woman who happens to be Black, would not have even been allowed in our same row, or maybe not even the balcony or the auditorium at all, not too much longer than 40 years ago.

But the world changed in how we all treat each other, welcome each other, include one another. Including those with an extra 21st Chromosome.

Saturday was an incredible day–one that could not have happened when I was born. Just think what may happen when I’m 80 and what life those with Down syndrome may be able to look forward to, if the world continues to welcome them.

Ms. Nicole and Juliet enjoying celebratory post-recital ice cream

Ms. Nicole and Juliet enjoying celebratory post-recital ice cream

(Hat tip to my colleague at the National Center for Prenatal & Postnatal Down Syndrome Resources, Stephanie Meredith, for sharing this insight with me in a different context).

Comments

  1. Lovely! She is very beautiful AND talented. I am excited about the future too.

  2. Glad you pointed out which one she was on stage, I would have never been able to pick her out of the group! Congrats to Juliet! She will have more medals in her future…build her a trophy case, and make it a big one!

  3. Jeannette says:

    Thank you for sharing. That was a beautifully, eloquently written story. Our children are beautiful and amazing, and deserved to be honored for their talents….and for who they are.

  4. Coreena says:

    Great story, thanks for sharing. I can’t imagine anything but a wonderful future for my girl, perhaps I am being a little naive but my 10 month old is amazing and I truly believe she is going to go a long way in life. Stories like these just affirm that belief.

  5. Sarah Hartway says:

    I remember years ago, sitting at my computer with a newspaper next to me. I was sending a letter to the editor that had something to do with Down syndrome and pregnancy termination rates. My son, Adam, who has Down syndrome and was maybe 10 at the time, approached, read the headline and asked me what it was about. It was simultaneously a wonderful moment of seeing his ability to read and begin to understand complex concepts and a sad moment of having to figure out how to explain this difficult phenomenon to him. Not all folks with Down syndrome will read but all are capable of so much more than was previously believed and changes in society, education and health care are helping us discover these abilities every day.

    • Sarah–thank you for your comment. I had deleted a reference of how my daughter’s life is representative of only her own and no one else’s, to recognize others may or may not do the same thing. I had also written that there are a host of things others with 46 chromosomes are doing that I’ll never do as well, but as you conclude, we all can do more when given the chance.

  6. Thanks Mark for hitting the mark, again and how far we have come. Just last week at one of the most prestigious hospitals in the country, Brigham and Women’s Hospital, Jon was seeing a new doctor for the first time and it was I who was excluded since she directed all questions and ocnversations with the patient! Jon not me! Great day…

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