What Raising a Child with Down Syndrome is Like

by Cassy Fiano on August 21, 2013

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I found out my son had Down syndrome when I was about 16 weeks pregnant with him. I had a lot of fears and misconceptions about what our lives would be like — thoughts of leukemia and open heart surgery flashed through my mind, coupled with fears that he would never have friends, never get married, never have a job or live on his own. I had a very, very bleak outlook on what it would be like to raise a child with Down syndrome. I never considered having an abortion, but I had very little hope. I felt like my life was over. It was like being in a fog, like I was surrounded by this darkness I had to try to grope my way out of. And no one could help, because no one else could understand. No one I knew had a child with Down syndrome. My family and friends were sympathetic, and they tried to say the right things, but really, what are the right things? I’m still not really sure.

Of course, the fog slowly lifted. After weeks of crying and grieving, acceptance slowly came. I gathered the strength to start learning about Down syndrome, and about what I would need to do. I came to realize that many of the fears I had were based on extremely outdated misconceptions and stereotypes. Medical advances, early intervention programs, and resources have allowed people with Down syndrome to do more than they ever had before. By the time Wyatt was born, I was at peace with who he was. I could be happy welcoming him into the world, extra chromosome and all.

One thing that was difficult — and still is difficult — is finding an honest understanding of what raising a child with Down syndrome is actually like. I read the Welcome to Holland essay and cried. But that only told me that things would get better. Well-known bloggers Kelle Hampton and Noah’s Dad were sort of helpful, but everything was a little too sunshine-and-roses. Raising a kid with Down syndrome is so awesome, you guys! Look how amazing and beautiful my kid is! I was scared at first too, but now life is all sparkles and unicorns and rainbows! Ugh.

With Wyatt now 15 months old, I can say this with confidence: raising a child with Down syndrome is not that different from raising a “normal” child. They’re babies first. They need to be changed, and fed, and loved. That’s about it. Day to day, I don’t really think much about Down syndrome at all. It isn’t something that has much of an effect on our lives, really. We were blessed in that Wyatt doesn’t have any major health problems, so he’s never had to go on any kind of special medications or undergo surgery. He likes music, he babbles to himself in the car, and he loves to cuddle with his mama. He’s a normal baby.

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There are a lot of days where life is so normal, that it almost seems surreal. I look at Wyatt and think, Does he really have Down syndrome?. Even almost two years post-diagnosis, I still find myself wondering if this is all real, and not something I imagined. It’s as if I feel like I’m going to wake up and find out that it was all a big mistake. I still find myself wondering why me.

But while it isn’t that different from raising, say, my older son… that doesn’t mean that it isn’t hard. I feel like it would be lying to say that it’s easy. I currently have therapy with Wyatt four times a week. And frankly, there are some days when it is just exhausting. There are a lot of times that I just wish, so much, for weeks without therapy session after therapy session, for Wyatt to reach his milestones without needing such an extraordinary amount of help. Bloggers like Noah’s Dad will show smiley, happy pictures of their kids in therapy, making it look like therapy is just SO MUCH FUN, YOU GUYS!, when in actuality, it is hard work. Most babies with Down syndrome are born with hypotonia, or low muscle tone. This is why it takes them so much longer to reach many physical milestones. And it means that physical therapy, for example, isn’t easy. It is hard for him. Some days, he genuinely struggles. And struggling during therapy equals lots of frustrated crying from Wyatt. Even worse is when he knows what he wants to do — say, crawl forward to get to a toy — and he just cannot do it. He wants to, but his body won’t cooperate. I cannot even imagine how frustrating that must be.

And while Wyatt’s making progress, and is right about where you expect him to be based on the Down syndrome milestone charts, there are a lot of times when it feels like we’re just standing still. It feels like he is never going to crawl, let alone walk. I wonder when it is I’ll hear him start to talk. And meanwhile, my friends have children younger than Wyatt, who are surpassing him in what they can do. Every time I see that a friend’s baby is already sitting and crawling and standing — things Wyatt cannot do — even though they’re months younger than he is, my heart breaks a little. I wish, more than anything, that he wasn’t so delayed… and then feel like a bad mother for feeling that way.

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Perhaps the most frustrating thing of all, though, is other people’s reactions to Wyatt. Almost all of them are well-meaning. But hearing about how full of love “they” are, or how “they” are always so happy — they being all people with Down syndrome is annoying as hell, and semi-insulting. I remember being told before I had Wyatt that babies with Down syndrome slept all the time, rarely cried, and were just happy little rays of sunshine. Ha! I wonder where that little angel baby is, because trust me, Wyatt cries. He throws little temper tantrums, he clenches his jaws when he doesn’t want to eat baby food, and in general, is definitely not always happy and quiet. He also makes adorable little babbling noises, has the cutest smile ever, and greets every morning with a big grin and a laugh. Basically, he’s a person, an entire person. He has the full scope of feelings and emotions and personality. He’s not a freaking puppy. He wasn’t sent here for everyone else to coo over, or to bring happy thoughts to the world. And the sad thing is, people don’t do this just towards babies with Down syndrome. It’s all people, so even as adults, many of us still infantilize them. We don’t see them as entire people. I tell someone that Wyatt has Down syndrome, and almost every time, he’s forced into this definition of what someone with Down syndrome “should” be. It’s as if people with Down syndrome can’t actually be their own person, or have their own personality. People with Down syndrome are always happy and full of love, right? Heaven forbid if they’re stubborn, or get mad at stupid stuff, or occasionally throw temper tantrums… all things that “normal” people do, and no one thinks twice about.

Despite all of these complaints, though, I honestly wouldn’t change anything about Wyatt. The truth is that raising a child with Down syndrome is hard. It really is. But is raising any child, extra chromosome or not, really easy? My older son gets on my nerves plenty of times. Frustration and struggles come with parenting. They’re certainly not unique to Down syndrome. Raising a child with Down syndrome does not doom you to a life of misery and sadness and despair, but neither does it grant you a life of awesome sunshine and daisies and rainbows. My life isn’t any fuller with love because of Down syndrome than it was without it. There’s more love because Wyatt is my child — not because he has an extra chromosome.

{ 5 comments… read them below or add one }

ROS August 21, 2013 at 2:36 pm

I cannot fully articulate how much I absolutely love that face. There’s been more than one occasion where that smile has popped up in my feed and completely turned around an absolutely horrid day- not because he’s a DS baby, but because he’s afreakingdorable. Yeah, I have more personal reasons of which you’re aware, but you just have cute freaking kids. :-D

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Kimberly Hoadley August 21, 2013 at 4:55 pm

I like what you wrote. You said almost all the things I would say at the stage of development your son is at. My son also has a similar story in the early years. My son Caleb just turned 8yrs. this past Sun. Aug.18th. I can’t believe how time seems to have flown by. I didn’t know Caleb had DS until he was born. So the shock was great but didn’t overwhelm me. But the fact that he was my one and only son overshadowed all the doom and gloom the Drs. tried to heap on me. He was born into a family of 6 sisters in which the youngest is now 22 and the oldest is 38. But he also has been healthy with no major illnesses to speak of. Gets the predictable colds and flues. But like you said raising him is like raising my “typical” children. Lots of Love, patience, tears, information sharing, laughs and hard work. But that’s what it takes to raise a child. I hate all the stereotyping too, of children with DS like they are clones of the extra chromosome. They are people first and a person with a DS second. Society needs to leave their preconceived ideas to themselves and let the people with DS define themselves. Thanks again for your post. PS: Wyatt will progress in his timing..no one else’s. That is one thing I have learned from my son the most and whether he reaches all those milestones you worry about or not. The fact that he keeps trying is worth all the effort!! Cheers!!

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Kate August 21, 2013 at 6:42 pm

“Wyatt will progress in his timing..no one else’s.”

well said Kimberly.

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Lisa Van Drese August 22, 2013 at 4:09 pm

I have a 2 year old son with Ds, and I can honestly say that it has opened doors that would have otherwise remained closed. I have a lot more love to give, because I have a wonderful child to teach and nurture. I believe I have a greater respect for people with challenges, and I think that is what people mean when they speak of having more love because of Ds. I am so fortunate that my son is extremely healthy, and incredibly smart. I do all of his therapies with him, because he enjoys playing and loves to learn. He has his own pace, but that’s okay with me. My daughter does not have Ds, and quite honestly, I do everything the same for both of my children. I am very proud to say that it has been determined on two separate occasions that my son does NOT have special needs. This is merely because I find a way to teach him. It truly has been sunshine and rainbows for me!!

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Cassy August 22, 2013 at 4:13 pm

That’s great that you feel that way! I wasn’t so much trying to point out all the negatives as I was just trying to be realistic. And like I said at the end of the post, parenting ANY child comes with challenges. My typical 2-year-old gets on my nerves just as much, if not more, than Wyatt does! LOL. All children can be frustrating and difficult and challenging, DS or not. But they also bring you love and joy and happiness. That’s true regardless of how many chromosomes your child has.

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