Do You Have Down Syndrome Too?

Circa 1990, my sister told her young son that there was no such thing as Santa Claus. She’d been perpetuating the “lie” and didn’t want to keep the truth from him any longer. She forewarned his friends’ parents that she was going to break the news to her son and that they might want to steer their young children clear of her enlightened child for awhile. The way I pictured it, she planned her speech, sat him down and, basically, said “[Son], there is no such thing as Santa Claus!” And, it did go down something like that. But, before she could explain, he jumped up, yelled, “You’re wrong about this, Mom!” and ran away. That enlightened little boy recently turned 33… and, I suppose, he no longer believes in Santa Claus (Poor kid!). Sometimes kids just need time to accept things!

My now 16-year-old daughter was diagnosed with Attention Deficit Hyperactivity Disorder – Inattentive Type (ADHD-I) in the fourth grade. She’d been seeing a counselor to help her process the abusive treatment she received several years earlier at the hands of a teacher who just didn’t understand how My Beautiful Old Soul could be so smart yet so inattentive and slow-moving — which IS pretty much the hallmark of her disability. Like my sister, I am committed to sharing the truth with my children (believing in Santa Claus notwithstanding). So, when my daughter’s therapist, medical doctor, teachers, and I finally honed in on her diagnosis, I immediately, and in simple terms, related it to my Daughter. I explained that everybody has something. Her brothers have Down syndrome, I eat too much, and ADHD-I is her thing. Her response was similar to my nephew’s, “But, I don’t want a diagnosis.” That was in 2012! And, she has since come to accept, if not embrace her attention deficit and how it makes her The Unique and Beautiful Old Soul she is. And, she’s pretty happy with who she is. (Most days, anyway… Remember, she is 16!)

So it was with The Boys! In 2005, My Identical Twin Sons were both born with an extra 21st chromosome… a genetic defect known as Trisomy 21, aka. Down syndrome. My family has been speaking openly and honestly about Down syndrome ever since. My Young Men have consistently heard the term used in regular conversation, and have been told that they have Down syndrome, which makes it a little harder for them to learn some things. But, My Boys have never been terribly interested… Until recently!

In honor of World Down Syndrome Day 2018 – 3/21, which represents 3 copies of the 21st chromosome — we facilitated a “Show Us Your Crazy Socks!” awareness activity and sock sale at The Boys’ elementary school and at the Old Soul’s High School respectively. (Note: They share the same neighborhood school and classroom they would have attended had they not been born with a disability… That’s Inclusion! A post for another day!) The World Down Syndrome Day celebration reinforced the message I have always shared with My Children… No matter how crazy, colorful, or mismatched our socks may seem… they’re all still socks! And, no matter whether you have Down syndrome, ADHD-I, or a big butt (like me, LOL), we are all still people… each only slightly different, more colorful, mismatched versions of the human beings we were all created to be.

WDSD'18 Crazy Socks M&B&Sophia

But this year, The Boys did not want to be mismatched socks. They wanted to be just like everyone else. As we talked about the upcoming activities in honor of World Down Syndrome Day, Brian said, “But, I don’t have Down syndrome.” And, Mike said, “I’m not Down, I’m UP!” While I AGREE WHOLE-HEARTEDLY that “Down” syndrome is most certainly a misnomer, I explained to My Boys that Dr. John Langdon Down is the man who first discovered the syndrome, and so it is named after him… And, not at all because the people who have it are “down” in any way.

Holding hands with my Beautiful Young Men as we strolled the rest of the way up the walkway to school the other day, Brian looked up at me and quietly asked, “Mom, do you have Down syndrome too?”

Obviously, he’d been thinking about this on his own as we had not talked about it for several weeks. And, Oh My God, I wanted so badly to be able to tell him that, yes, I also have Down syndrome. I wanted to ease his mind and tell him, “Honey, we are the same, you and I.” I knew that was the answer he wanted to hear. Instead, I told him the truth… No, Babe, I do not have Down syndrome. But, I have this big butt thing that you don’t have… because eating too much is my “thing!” I explained that Down syndrome is his and his brother’s “thing.” And, his sister’s “thing” is ADHD-I. And, everyone has some “thing.” There are others who have Down syndrome, others with ADHD-I, and even others with this big butt thing. He chuckled nervously (because I said “butt”). Then, the faintest protest flickered briefly in his beautiful green eyes, and quietly faded away without a word. He was painfully quiet, which is not his style. Acceptance, maybe, after hearing about but never owning this Down syndrome thing all these years. A painful milestone…

Mothers that have traveled this path before me told me this day would come. The day My Beautiful Boys would realize they had Down syndrome and that they were, in fact, a little bit different from everyone else. I felt unbearably sad for a moment. But, I stood by my explanation — everybody does have some “thing.” Time stood still as I watched him processing the realization that he really does have Down syndrome and is not the same as everyone else. Not even the same as his mother which he’d obviously been counting on these past few weeks before he got up the guts to voice it. I stopped, and hugged him as tightly as I could. Hoping that he would feel as loved as I love him… so beyond words… so deeply in my soul. I reiterated that each of us has our own “thing” that is different and unique about us. That these “things” are what makes us uniquely US… And, it is precisely this unique “thing” that everyone has that actually makes us all the same. He hugged me tight and whispered, “I love you, Mama!” And, the three of us continued to walk on to the school doors. Mike said nothing but, I knew, he’d been watching cautiously and listening intently.

As I do every day, I kissed and hugged them goodbye, and watched them walk together down the hall. I could see that My Beautiful Young Men were a bit weighed down with their new-to-them “thing,” if not with their backpacks. They turned out of sight as they ascended the stairs and, I thought, they’re moving on now, knowing they have Down syndrome. I thanked God they have each other to be the “same” with. And, I thought about all the mothers who have children with disabilities living through this moment, and living with this moment for the rest of their lives. Mama hearts breaking over and over again all around the world. We really are all the same in our unique-ness, our different-ness, our “thing-ness.” Truly, we are all just like everyone else… Wanting to be accepted for who we are, where we are, just as we are.

So many of us have less-than-stellar stories about how the news was broken to us, how we came to welcome Down syndrome into our lives. Knowing it was stressful for us adults, I tried to put myself in My Boys’ shoes, if not their minds, and imagine how I might have wanted such news to be delivered. And, while I personally love a surprise, I felt this sort of “news” deserved a gradual dawning upon. I would love to hear how you handled the telling, and how your kids handled the knowing?

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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
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2 Responses to Do You Have Down Syndrome Too?

  1. Isaac Ross says:

    Wait… Santa’s NOT real? Aunt Maggie?

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