Down Syndrome Awareness Month

In honor of Down Syndrome Awareness month, I asked good friend Rhonda Schember if she would be willing to say a few words for my blog. Rhonda is, in her own words: 
former Home Economist and food columnist
Mother of Jaime, and twins, Joe & Jodi
Co-founder of the first Down syndrome parent group in Erie
Current President of The Arc of Erie
Longtime volunteer in Human Services
Married to a guy named Joe, who happens to be the Mayor of Erie!
I was very moved by her blog this month, and I hope you will enjoy it as well! 

Every year, during the month of October, we recognize in special ways those born with Down syndrome. Proclamations are written, walks are held, dances are scheduled and, for a few short weeks, media sources bring attention to the most commonly diagnosed genetic anomaly in the United States.

Today, from a grinning Gerber baby to a giant Jumbo-tron montage in Times Square, a child with Down syndrome is embraced and celebrated.

Statistically, 1 in 700 babies born every year in this country has Down syndrome. But, unless they are identical twins, no two are the same. They aren’t all giggly, huggy, chubby reincarnations from a single mold. Each and every one is unique with special talents and skills.

A few months ago, while attending an event on the Bayfront, I noticed a handsome young boy walking hand-in-hand with his Dad. He was dressed in a sport jacket and bright bowtie and was obviously having a great time. When I realized he had Down syndrome, I was immediately drawn to him.

Admittedly, I was jealous. I could not bring my daughter to such an event because she couldn’t handle the crowd, the closeness or even the noise of a boat horn. But a tap on the shoulder quickly brought me back to reality – I actually met this young man when he was just an infant! His Mom stopped to reintroduce herself…and quickly pointed out his twin sister across the room.

Long before Facebook and Instagram and Snapchat, parents met through word-of-mouth and phone referrals. As the parent of similar twins, I had visited this Mom to welcome her to our unique club and provide congratulations, advice and support.

Today, times are different. That “personal” connection is usually a computer screen with answers to a myriad of new-parent questions only a click away. You’ll still find lots of cookie-cutter responses like the first one I ever heard on a hospital hotline: “There is no cure!”

Thankfully, times have changed and most doctors and parents are better informed today. Books have been written, television shows produced and many of the myths surrounding our children have been debunked.

But, if you truly want to understand what makes each child with Down syndrome unique – ask a parent, or two or three. I guarantee each response will be funny, sensitive, loving and different. Of course, if you’re lucky enough to meet the parents of twins like mine – expect the stories to multiply, exponentially!

The next time you’re on the internet, visit The Arc of Erie and Lake Erie Area Disability Supports (LEADS) pages on Facebook.  Both provide a direct connection to programs and activities for parents and families in the Erie area. And, if you look soon, you’ll get a glimpse of our new 2019 calendar of smiling faces!

At the end of the day, whether a child is a red-head or brunette, has blue eyes or brown, short fingers or long, clear speech or none at all…it doesn’t really matter.  What IS important is that each and every child is loved.

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