Upside Down … and Sometimes Inside Out!
By Guest Blogger Laura Laxton
When you have a child with Down syndrome, you get used to a few things: hearing how happy and loving people with Down syndrome are; therapy (physical, speech-language, occupational); extra doctor visits; averted eyes or odd stares; “S/He’s so cute!”; pitying looks; … The list seems endless. And conflicting. And, in the end, irrelevant.
My soon-to-be 7-year-old son has DS – and red hair, and blue eyes, and the most impish/sweetest grin you’ll ever see. We found out prenatally about the DS, and for a long time, I could not think of him except in terms of his medical diagnosis. After he was born, however, he was simply my son, which is far more complex, wonderful and accurate of a description.
You see, parenting a child with Down syndrome is just… parenting. As an audience of moms, everyone reading this knows how complicated, profound and simple it is to be a parent. You love your child and deal with whatever crops up along the way. For some kids with Down syndrome, that might include heart issues or vision problems or delayed speech. For some kids without Down syndrome, that might include allergies or vision problems or speech issues.
One of the national Down syndrome organizations had an ad campaign called “More Alike Than Different,” which is SO true. Our son is much like his older, typically developing sister in several ways (red hair, blue eyes, impish sense of humor, love of bodily noises, cracks up at Donald Duck and Chip & Dale …) and has been completely unlike her in others (he actually slept as a newborn, has taken longer to potty train, is more rough-and-tumble, loves any activity that involves a ball, is difficult to understand when he talks). I can’t tell you the number of times I have wondered if a behavior or developmental quirk is because he’s a boy, he’s 4/5/6 or he has Down syndrome – or a combination of all three! And now that his sister is a preteen middle schooler … Well, let’s just say that he can be infinitely easier to understand at times!
What I have found is that, like everything, parenting a child with Down syndrome is a matter of perspective. And I got my first dose of that before he was even born. When we found out about Malcolm’s diagnosis, I shared the news with everyone. A friend’s husband, who is a criminal defense attorney and from a culture where sons are revered, exclaimed, “Oh! They are so lucky!” When questioned, he explained, “They will never have to worry about him becoming a criminal, and he might stay with them when he grows up!”
See? Perspective. Some worries you have will be different from other parents’ but in the end, you still are just worrying about your child and trying to love and protect them as best you can and raise them to be fit for society. (Table manners-wise, our son is WAY ahead of his sister. WAY.)
One statement that resonated and stayed with me came from the mother of a 40-something-year-old woman with Down syndrome. She was talking about her daughter’s dating relationship and how that had helped her daughter become more independent. She remarked, “That’s all we want, really: For our children to have a normal life. Life should include friendships, risk, heartbreak, achievement, disappointment, a job, love – all the things we want for our typical children.”
And yes, that’s exactly what I want for Malcolm, to have a “normal” life. For that to happen, however, society needs to not be afraid of him because he looks and sounds a little different. It’s human nature to shy away from what makes us uncomfortable, and developmental or physical issues definitely make people uncomfortable. The solution, however, is easy: Exposure. By spending time with someone who has DS, people start to lose their fear and see that person for who he or she is. An excellent place to start is the annual Buddy Walk, which is a national event to raise awareness of Down syndrome. The local event will take place Saturday, Oct. 4, at West Forsyth High School in Clemmons. Festivities include games, inflatables, music, a talent show, food, more food, a raffle, face painting and much more – perfect for families! For more information or to register, visit www.pdssn.org.
If you come out – and I hope you do! – Malcolm will be the redhead with a bevy of high-school girls following him around. Come say hi!
