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This writer's take

Maureen Wallace and son Charlie

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."

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.

Would you celebrate a leukemia diagnosis?

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?

Physical, cognitive challenges

Maureen Wallace and kids

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.

Charlie is still Charlie, with 46 chromosomes or with 47

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.

"Down syndrome doesn’t make my child wonderful. Down syndrome presents challenges to my child."

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).

Negative result is positive news

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.

"It’s wonderful news because now their child is removed from the statistic of children with special needs who have been sexually abused."

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.”

No! Do not feel sorry for me!

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.

My baby does not belong to Dr. Down

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.”

Advice for Today show

Jennifer Towell and son Joey

What’s next? Blogger and mom Jennifer Towell offers some specific suggestions for future news coverage on the Today show:

  • Provide an accurate and complete report that shows both sides of the issue.
  • Consult with parents of children with Down syndrome as well as older individuals with Down syndrome.
  • Show people with Down syndrome the same respect you would any other individual.
  • Recognize that individuals with Down syndrome have feelings. They are television viewers, consumers and valued members of families and societies.

“[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

More about Down syndrome

Study seeks experiences with prenatal diagnosis of Down syndrome
What expecting moms should know about prenatal testing
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Tags: prenatal tests

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Comments

Comments on "Today show stirs emotions with prenatal test for Down syndrome"

Tara September 23, 2013 | 6:23 AM

My daughter who is blessed with down syndrome is the joy if my life, they offered abortion, obviously, I said no. She makes me realize how precious life is!

rose April 12, 2013 | 4:24 AM

One question - who thinks the term / name of 'Downs Syndrome' should be changed to something more uplifting and reflects the more up to date and modern times that we share with Downs Syndrome children and adults. I have a two year old little boy and feel I am so pleased he is born in this day and age (although we still have a lot to learn socially) than back in the 50's, 60's, 70's even 80's. If so what are your suggestions?

Maureen Wallace February 06, 2013 | 10:43 AM

TUC, thanks for sharing your perspective. I agree with you about the callouts (which, coincidentally, I didn't choose). I did write all the subheads, and I stand behind those. I feel together they provide a balanced synopsis of the article, which reflects many different views. I would like to clarify one thing. Wanting to take away my son's Ds does NOT mean I want to take away my son. I have said it before and I'll say it again: I could not possibly love this child or his sister anymore than I do. I want the best, and I wish I could make life so much easier for him. We actually chose my daughter's name because we knew it would be somewhat easier for him to say. That doesn't mean I'm diminishing my expectations. I have compared it to teaching a child to brush his teeth. I may give him a stepstool to better reach the sink. Is that spoiling him or removing the expectation that he won't one day reach it on his own? I don't think so. And if one day he is able to say the most complex of names, no one will cheer louder than I. Thank you again to everyone who has contributed to this excellent discussion!

TUC February 06, 2013 | 7:43 AM

I think that parents bristled over this not because the couple was relieved that their child did not have Down syndrome but rather because the way the information was discussed infers that the opposite would have been "bad news" and that the couple would not have been "safe" from Ds. Imagine if the couple on Matt Lauer's show was going to have a baby with Ds, would that part of the conversation have been, "So let's get right to the bad news" with the couple responding, "Yeah, we aren't safe... our baby has Down syndrome." I doubt it. It also concerns me that by page two most people are probably skimming more than reading and the headlines and callouts alone reinforce the message that having a child with Down syndrome is a bad thing and something to fear, although I know that is not the message the author intended.

Maureen Wallace February 05, 2013 | 6:46 PM

Thank you to everyone who has commented and contributed to this conversation. Tonight, a friend shared with me this column from a grandmother who wrote about her graddaughter, Lucy (link below). She, like several of the comments here following my story, gave me much broader perspective and also hope that there will come a time when I join the camp of "I wouldn't change a thing." It seems my current perspective trends with younger parents - parents whose child with Ds is still a toddler, for example. One comment that bothers me... Sam, I don't mean to judge anyone, and certainly not people with Down syndrome. Each person is entitled to his or her own opinion, and I shared mine knowing it would not be popular. I can't imagine life without our Charlie. If someone offered me the choice to take away his Down syndrome with the reassurance that nothing else would change about him, I would choose THAT door. Thanks again for all for such thoughtful and respectful comments! The more we talk and share ideas, the more we can help society accept people with differences, like our children. http://www.boston/news/local/massachusetts/2013/01/27/pictures-can-capture-what-love-sees/EoEdeeeOGLhKClh5OjbZ7L/story.html

Mike Sullivan February 05, 2013 | 5:18 PM

These negative attitudes towards those with Down syndrome are a reflection of a broken society that fails to recognise the inherent dignity of all human life. Such views simply reflect the attitude of those expressing them, they have nothing to do with the actual person concerned. Parents seem to forget that his isn't about them, it's about promoting a society that just accepts their children for who they are. People with Down syndrome just need acceptance, not judgement.

Glenice February 05, 2013 | 4:47 PM

Sara, No one chooses down syndrome just as no one chooses for their child to be injured or even Killed in an car accident or their child to have cancer or a child to pass away when they are young for anything else but that is is life. With that said it is dissapointing this segment was even put on tv. My 2nd son born 13 months ago with ds is the love of our lives. I had a small non common marKer when I had my morph scan but chose not to do any testing for DS or CF as he was my son and he was going to be loved no matter what.

Sam Paior February 05, 2013 | 4:07 PM

Hi Maureen, Thanks for your blog. I have a son with Down syndrome who turns 13 in two weeks. When Ben was younger, I would follow emails lists for families with a child with Down syndrome, and whenever the discussion came up of the potential for a genuine "cure" it was a clanger of a discussion. Inevitably the conversation turned into the younger parents saying "I would take away his DS in a heartbeat", so the parents of older kids saying "I would take away all the health concerns, but if I got rid of her DS, it would take away who she is - I wouldn't do it!". I was *firmly* in the younger parent camp,a nd thought the rest were, quite frankly, insane to not want to take away a "world of pain and rejection" for their children. I loved my little man with every fibre of my being, but I hated the DS. But guess what? I flipped. A few years ago I realised that my Ben is an important, contributing member of our society. That if we took away his DS, he wouldn't be Ben any longer. So please, please reserve your judgement for the future, and don't allow any potential pride to let you change your mind. I did. all the best

Louis Friedman February 05, 2013 | 7:05 AM

My ten year old son Isaac has Down syndrome. He is the greatest thing that ever happened to me. There is no way Matt Lauer - or any other shallow pop cultural figure - could understand.

Mike Sullivan February 04, 2013 | 10:14 PM

Any suggestions that Down syndrome is negative is sort of problamatic, in that it doesn't aknowledge full acceptance for the person as they are. Saying that it is good news that a prenatal diagnosis is negative for Down syndrome is devaluing the lives of people with Down syndrome, as is saying that one wishes another doesn't have it. All people with Down syndrome need is acceptance for who they are, not what any else thinks is right for them. Just love every child for who they are and get over the labels.

Maureen Wallace February 04, 2013 | 7:48 PM

Hi, Taina. Thank you for taking the time to share your inspiring story! I invite you to re-read my article. I've never presumed to speak for all parents of children with Ds; in fact, I worked very hard to ensure many opinions were represented in this piece. The opinions expressed are my own (well, and actually my husband agrees). We love our son beyond words (although I often try to put it into words) and want only the best for him. He and his sister will always be my proudest accomplishments. PS - I'm also pro-choice. We chose to have our beautiful baby (actually, it wasn't even a choice - we never even considered termination, but I would never try to dictate that decision for someone else), and I wouldn't change any of our decisions. We have a wonderful life and two incredible kids. Life is good!

Taina Karru-Olsen February 04, 2013 | 6:56 PM

Maureen, although I appreciate your honesty, frankly, I have to say that I'm a little offended by your assumption that your feelings as a parent to a child with Ds are shared by us all. I too am one of those parents who would not remove my daughter's Down syndrome if that magic wand appeared. I'm also one of the parents who has a reality to back this claim up with. Atheist and extremely pro-choice, we got our positive diagnosis at 13 weeks of pregnancy, not after trying for a long time (actually, trying once was all it took), and not desperate for a child, any child, either. To us having a child with Down syndrome was a game changer, but not something that brought our world crashing down. Today, we're the extremely proud parents of a 16-month-old and living exactly the life we always envisioned. We're a family of three with a daughter who can do whatever she wishes when she gets to that point and be the person her genes and her environment (our more or less mediocre parenting skills) mold her into. That's all that we ever imagined.

Maureen Wallace February 04, 2013 | 1:30 PM

Lisa, you are an incredible mom! What a beautiful story and thank you for sharing. While we disagree on some things, I know we both agree that we are so very lucky to have our beautiful children in our lives. I hope that common bond will help so many in the Down syndrome community support each other and celebrate our differences - much like our children's! Thank you again for sharing... I am grateful.

Lisa Morguess February 04, 2013 | 12:23 PM

Great article, Maureen. I appreciate your honesty. I guess I am one of those parents who says she wouldn't change her child, wouldn't take away his Down syndrome. I'm not one who feels that Down syndrome is a blessing, and I don't savor the challenges and health issues/risks that go along with Ds. And although I don't think I define Finn, my four-year old son, by his Down syndrome, it is difficult for me to not see Down syndrome as very much a part of his identity. Of course, there is no way to know, but it seems to me that he WOULD be a different little boy if he didn't have Ds, and because I love the Finn that he is, I can't separate him from Ds. That is not to say that his future doesn't scare the crap out of me at times, or even that I rejoice in the challenges he and we face because of his Ds - no. I have seven kids, and I think that's given me a certain perspective, a realization that nobody goes through life without challenge, without battles to fight. If Finn didn't have Ds, he still wouldn't be guaranteed an easy life, or good health, or anything else. This is the hand he was dealt, and although I don't feel like we are just making the best of a bad situation, I do feel that you play the hand you're dealt - that's life. A side note: I found myself very unexpectedly pregnant last year at the age of 44, when my risk of having a baby with Ds or some other anomaly was sky-high - and I already had a kid with Ds. I chose not to do any prenatal testing. While I do see the value in being prepared, it wasn't enough to sway me. I had a mid-pregnancy anatomical ultrasound to rule out any obvious anomalies that would preclude the home birth I planned to have, and that was it. We did not find out about Finn's Ds until after he was born, and although it shook us to our cores, I'm extremely grateful that it happened that way - that I had a live, flesh and blood baby in my arms when I got the news, and not just some scary diagnosis. If this next baby was going to have Ds or anything else, I wanted to find out the same way. She was born at home last June, and the first thing my midwife did was show me the creases in her palms, because Finn has the single crease common with Ds. I wouldn't even look at her palms. I just told my midwife, "I don't care, I don't care, I just care that I have my baby."

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