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What the Parents Of Kids With Down Syndrome Want You To Know

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What the Parents Of Kids With Down Syndrome Want You To Know

Dear Stranger,

You may not realize it, but I see you watching my child. Your eyes are everywhere: at the playground, the school, and even in the grocery store. Your stare follows us, and I can even feel your thoughts. You’re wondering about my child, why he looks different, pitying us for our misfortune of having him, feeling sorry for the life my family is living – a life where my child has been diagnosed with Down Syndrome. Passing judgment is such an easy thing to do, but before you judge us, I want you to understand some things about my child.

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The first thing that I need you to understand is that neither myself nor my child have chosen the road of Down Syndrome. It is a difficult road full of intellectual and medical uncertainties, such as lower IQ, heart defects, deafness, and respiratory infections. But no mistakes were made during pregnancy to cause my child to have Down Syndrome. Sometimes things happen that you didn’t see coming. In my child’s DNA, one extra copy of chromosome 21 changed the entire life of my child. It’s that one extra copy that sets my child apart from yours, but please know he isn’t all that different.

It can be seen from the outside that my child has Down Syndrome – this is why you look at him when we pass you. But take a moment to understand what is behind his appearance. His eyes may be slanted, but he holds all of the world’s laughter and joy inside of them. His mouth may look small while his tongue seems too large, but his smile will completely warm your heart. And while his arms may not be very strong, the hugs that he freely gives with them are powerful enough to hold a person together.

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You may have a hard time understanding my child’s speech, and if you saw his test scores you might not be too impressed. And long after your child has stopped having temper-tantrums, my child may still be going through them. But we are lucky to have such wonderful supports from school and Down Syndrome organizations, with therapies and kind teachers that push my child to succeed. My child may not make the milestones that yours does – but his are just as amazing.

Because my child has Down Syndrome, he is not going to be like yours. But in life, no two people are ever walking down the same path. Everyone has their own journey, and this journey is mine to take with my child. There is no doubt that the road ahead will be full of obstacles for us both. In a world made for everyone who is “normal,” it is not easy to fit in when you are so extraordinary. There will be times ahead of us that are filled with frustrations, and tears, as we are continually reminded of the differences between the “normal” world and our child. On these day we remind ourselves that our child is a gift, and no matter how difficult it may seem – he will change the world.

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So next time you see us in the mall, or the restaurant, or taking a walk on a sunny day, please don’t feel sorry for us, thinking about the life that he is destined to miss out on. Instead think of the life full of wonder that he experiences every day. Try to understand how special he is, and how luck we feel to have him. Though his heart may have defects on the outside, the inside of his heart is full of kindness and caring that he loves to give to the world. Share a smile with him, and I promise you won’t be disappointed at how quickly he will make your day.

Sincerely,
A Very Thankful Parent

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Featured photo credit: Rebecca Wilson via flickr.com

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