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Individuality is larger than a diagnosis

October is Down syndrome awareness month. I’ve noticed on social media that there seems to be a day and a month for everything. It’s hard to keep track of! This month is also dedicated to breast cancer and domestic violence.

But October is always glows blue and yellow for me. The focus on Down syndrome has shifted tremendously in recent years. I’m not sure of how many individuals with Down syndrome we assist. I do know that 1 in every 691 babies are born with three copies of their 21st chromosome. They all have a little something “extra.”

There is a saying about autism that states “if you’ve met one person with autism, you’ve met ONE person with autism.” It is meant to explain how very vast its results can be on an individual. If I could amend it, I would explain that it is much the same with Down syndrome as well…and schizophrenia and dyslexia and pretty much all other things that set people apart. If we go further, it can truly relate to everyone. Remember the stigma placed on blondes? It’s silly, right?  To assume there is one single set of attributes which can be related to an entire group of people whom only share one common set of characteristics.

I appreciate this month of awareness toward a very big diagnosis. We also need to remember to consciously note individuality. Individuality is so much bigger than any diagnosis.

Beyond my career path as an MSC, I am touched by Down syndrome personally. It’s all very close to my heart. Welcome to Holland is a wonderful poem that is often used to explain what it feels like when life hands your family a situation which you hadn’t prepared for. While it doesn’t completely represent my path, I am told that it is a very accurate portrayal of those early days. My airplane didn’t unexpectedly take me there. I picked up my figurative passport and booked my figurative flight with full understanding of what I was getting into.

I had the privilege to walk in the 21st annual NYC Buddy Walk last month. What an inspiring experience. Forget the fact that I managed to corral four children all day through the subway system and Central Park without losing a single one, it was amazing to be surrounded by families, providers, and champions for one great big cause.

Since Down syndrome came into my life through a window, I can appreciate in a light that belongs to neither a parent nor a professional. I found myself in awe of a young award recipient. It was so wonderful to listen to her rave about how “awesome” her life is as a college student. She had me at “Taco Tuesday.” Putting my MSC hat on, I would bet money that she self directs her services.

This is an interesting time to be in our field. We are going to continue seeing progress and acceptance. That day was full of realizations revolving around how drastically society has changed. It was a day of celebrating all of the opportunities and potential that will continue to be brought to light. I will participate in the Buddy Walk until the following happens:

When it stops being notable that the child in my life can read at her grade level.

When it stops being notable that she can memorize and perform every Taylor Swift song.

When it stops being notable that she can write letters to the people she loves…that is the day we are always walking toward.

That is the day we are all walking toward each time we park our cars and head into the office.

Each day we walk toward the day when people stop saying “they give great hugs” like it is something that will go on a resume or college application. There is potential in everyone and I am dedicated to drawing it out. And I think that you are too. And that is why you, my colleagues, are my people. Don’t give up. Hang in there with me. Each day may feel inconsequential but the moments, they add up. We will continue to see growth and new opportunities.

Please celebrate October as Down syndrome awareness month with me- And do something extra.


Written By Heather Purcell, MSC at Access: Supports for Living


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