My next sentence may alienate parents and loved ones of children with Down syndrome, but it’s honest and I refuse to believe I’m alone with this concept.
I would give anything to take away my son’s Down syndrome diagnosis. While I have come to accept it, I worry about and even fear its ramifications every day. If possible, I would flip a switch to eliminate Charlie’s diagnosis. Note I said his diagnosis, not Charlie himself. Just that one extra chromosome that I envision as a hurdle he faces every day.
Some parents criticized the Today show for missing an opportunity to educate people on what Ds really is and what it means. Many parents said expectant parents’ fear is a “fear of the unknown.”
I agree the Today show should have included more information about Down syndrome and how accomplished individuals with Ds can be. The show had a tremendous opportunity to show a balanced outcome, and instead, they appeared to promote a prenatal test.
Here’s the thing. When we received our prenatal diagnosis (for many of the same reasons the Today show couple cited: So we could be prepared and see specialists if needed, which we ended up doing), I was scared by the unknown. When Charlie was born, many of those fears evaporated. Yet, some lingered, and now I’m scared of the known and the unknown.
The truth is, Down syndrome comes with increased risk of many health conditions, including a greater risk of leukemia. Please, tell me what parent welcomes a child’s diagnosis of leukemia? What parent hears her child has a life-threatening heart condition and leaps for joy?
Most children with Down syndrome have low muscle tone, which means some of the simplest accomplishments children make as they develop can take twice, three times or even four times as long for a child with Down syndrome.
My son, Charlie, is 2-1/2 years old and is struggling to walk. My daughter, Mary Emma, is 14 months old and almost running (I say “almost” because when she does run, it ends unsuccessfully).
When I say I fear the ramifications of Charlie’s Ds diagnosis, please note that’s because we have very clear challenges ahead of us that currently scare the hell out of me. Will my son ever say another word besides, “No?” Will he ever be able to say, “I love you, Mommy?” No one can answer that, and the reality scares me and causes such an ache in my heart.
Now, please note this next truth: I love my children with every fiber of my being. I will do and have done everything possible for them to thrive, be surrounded by love and never want for essentials.
When I hear parents say, “Oh, I wouldn’t change a thing,” I have a hard time believing that’s true. If someone thinks taking away a child’s extra chromosome means taking away that child’s essence, personality, unique and quirky sense of humor and ability to coddle a grin from the sternest of adults, then it seems you are defining your child by that extra chromosome.
I know with complete confidence that, extra chromosome or no extra chromosome, the little boy my husband and I created still would be bright, loving, cheerful, moody, dramatic, stubborn and hysterically funny. That’s because I know that child would still have our genes, and we are all those things.
Down syndrome doesn’t make my child wonderful. Down syndrome presents challenges to my child. Perhaps Down syndrome makes him stronger, emotionally, and perhaps it has made us stronger, emotionally, but that inner strength contrasts with his external, physical challenges. He struggles to walk. He won’t talk. Cognitively, some days I think he is just conning me into thinking he understands what I’m saying (because he’s bright enough to figure out a way to get by, chuckling at the right times, looking serious and even saying “no” at appropriate times more often than not).
That’s the essence of my soapbox on the issue. I don’t blame Matt Lauer for a millisecond for referring to a negative prenatal Trisomy test as “good news.” It’s wonderful news, and I’m so happy for that couple.
Their negative result means those two parents are much less likely to have to have weekly, if not daily ultrasounds to monitor their child’s prenatal health (in our case, Charlie had hydrops, a life-threatening condition that resulted in his premature birth at 33 weeks).
It’s wonderful news because even if their child turns out to rob banks for a living and use improper grammar, his parents can do the best they can to raise him and not necessarily face the challenge of health issues, developmental delays and, oh yes, the discrimination, judgment and hatred that is lobbed at people with special needs often enough to make me cry myself to sleep every once in a while.
It’s wonderful news because now their child is removed from the statistic of children with special needs who have been sexually abused.
It’s wonderful news because their marriage can now face “normal” rigors and a “standard” risk of divorce, versus parents of a child with special needs who have an increased risk of divorce because parenting a child with special needs is tough. It’s tough, people! Every accomplishment is a fight, and sometimes as humans, we get tired. We get exhausted, in fact.
When a mother has demonstrated the sign for “Mommy” at least 87,432 times in her son’s 36 months of life with no reward, she is drained. Charlie has not mimicked the sign or even tried to whisper, “Ma-ma.”
Rather, feel empathy and realize we as a society have a long way to go in providing the best care for people with disabilities. I rant and rave about the issues my son and my family face because I need you to understand that we as a society have a long way to go. We can do so much better at realizing and supporting the incredible opportunities for progress, growth and accomplishment for people with disabilities.
Now. About Dr. Nancy Snyderman and her use of the term, “Down’s babies.”
Dr. Snyderman. C’mon, now! While your generation may have used many words that today’s society deems disrespectful, I hold you to a much higher standard to be well versed on respectful language.
My son is not a “Down’s baby.” He is a boy. He is a funny, stubborn little boy who happens to have Down syndrome, named for Dr. John Langdon Down, who had the brilliance to identify the third copy of the 21st chromosome and the misfortune of having a depressing last name.
People-first language isn’t about political correctness, it’s about respect. You wouldn’t identify a woman with cancer as “that cancer woman,” would you? Please call my son a boy with Down syndrome. Please decide you owe it to us as a medical expert whose word choices touch millions.
Better yet, please call my son “Charlie.”
What’s next? Blogger and mom Jennifer Towell offers some specific suggestions for future news coverage on the Today show:
“[The fact that] a person has Down syndrome or any disability does not take away from their ability to understand what people are saying about them,” Towell points out.
Instead of Matt Lauer beginning the story with, “Let’s get to the good news,” Towell says, “It would have been so easy for [him] to say to the family, ‘What were the results of your testing?’”
Dr. Skotko agrees. “Matt Lauer could have struck a more neutral tone by just asking, ‘The results came back negative for Down syndrome. How does this make you feel?’”
“Medical professionals practice hard to strike a neutral tone, but medicine is as much of an art, as it is a science,” Dr. Skotko points out. “So, too, is journalism.”
Images of the Towell family of Akron, Ohio - Photographer Nat Hansumrittisak
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