Expectations For My Child With Down Syndrome

Do Not Underestimate My Child With Down Syndrome

Amanda Roeben Artistry / amandaroebenart.com

Recently, I read a Facebook post that challenged parents of kids with Down syndrome to share about the parts of their life that aren’t all “rainbows and sunshine.”

What?! You mean that your children don’t rise and called you blessed every morning with a piping-hot cup of coffee in their hand? They don’t cook their own meals, clean them up, and then wash and fold all of their freshly washed laundry? Thats not your reality?!

down syndrome

Amanda Roeben Artistry / amandaroebenart.com

Don’t stress. It’s not mine either. My reality is waking up in the morning to a 4-year-old who “accident-tally” peed in my bed because he was scared of the monsters in his closet. Or finding stiff, smelly boys’ socks behind the dresser that were “cleaned up” six months ago.

It’s also the time that my husband cleaned out the refrigerator and found ravioli that had been made an unknown amount of weeks ago. Or the time my son was caught peeing in the neighbor’s yard. The same child who threw food against the window to “feed the birds.” There was also that time… surely you get the idea. (If you could see my face right now, you’d realize how embarrassed I am thinking about how un-unicorny our life really is.)

down syndrome

Amanda Roeben Artistry / amandaroebenart.com

When we decided to adopt our youngest son, who also happens to have Down syndrome, we knew that life with him wouldn’t be easy or perfect. He came home at 2 years old, and he was severely delayed. Zeb weighed about 18 pounds (he should have been around 28), wasn’t able to crawl, sit up unassisted, or drink from a bottle.


He was essentially a newborn baby who happened to wear bigger clothes. None of this surprised us because all of this is considered “normal” for a child adopted from an orphanage. Even though we had set our expectations low at this point, it was still extremely stressful. He had feeding challenges that we hadn’t had with our other children and part of the reason was because of his low muscle tone. The other part was because of how he had been fed the first two years of his life.

If I’m being totally honest, the most difficult parts of having a child with Down syndrome come from outside of our house, not from the inside. We knew that having children with special needs would open us up to criticism and unwanted opinions, much like the “advice” a pregnant woman gets every time she goes into a public place. However, we were not prepared for the extremely low expectations that other people would have for our children. We didn’t realize that his diagnosis was actually the “easy” part.

We’ve been asked multiple times if he will ever talk, walk, or be potty trained. Someone once told me that our lives were “over” and we would one day regret this “misguided” decision to adopt our children. I’ve had a therapist call my son a “Downsy” and she just loved them because they were always so happy. (Uh…I can promise you that Zeb is not always happy. He is able to express the full range of human emotions, and if you don’t believe me, come on over and see the 3-year-old throw a temper tantrum!)

I’ve looked online and have seen what the world thinks about people with Down syndrome; it made me so nauseous that I had to walk away from my computer.

Our family fully believes that Zeb (and our other son, who has cerebral palsy, Nikolas) will have an opportunity to live on their own, have a fulfilling and steady job, have a partner and get married if they so choose, and so much more. All of our children, regardless what their different abilities are, have the same expectations placed on them.

– We expect them to be respectful, polite, and honorable to one another, their parents, their peers, and other adults.

– We want them to try their hardest at school because we desire for them to be intelligent, knowledgeable, and thoughtful teenagers. We want them to be able to discuss a topic with someone who might have a different viewpoint and be respectful of the other person.

– We desire for them to have a relationship with the Lord.

– We expect them to be quiet and eat their food in a restaurant or stop talking when a doctor walks into the exam room. Basically, just being aware that they aren’t the most important person in a room!

– We hope that they will grow into adults who desire to make a positive difference in other people’s lives. To love the unloved, support and bring healing to the broken, and care for the least of those. At this age, that means getting out of their comfort zone and serving other people by helping them with their yard work, “Adopt-a-Cop,” helping each other clean their rooms, writing letters to friends, volunteering at a food bank, raising money for adoptions, etc. The possibilities are endless.

We have so many other expectations of our children, but this is what I can think of on only two cups of coffee.

If you know someone who has a child with Down syndrome or if you know an adult with Down syndrome, treat them the same way you would treat anyone else their age. Say hello! Ask what their interests are. Ask them what they like to do during the summer or how they celebrated their birthday. Ask how school is going or if they play any sports. Invite their family over for a playdate or for dinner. Please, treat them the same way you would treat any other person or family.

Our philosophy is to focus on the special abilities that Zeb has instead of the things that he isn’t able to do. There is no point in constantly comparing him to his peers and thinking about the different ways he is developmentally behind them or worrying about what the extended future might look like for him. We will encourage him to do the best that he can do, day after day, and trust that all the pieces will fall into place. We will fight for full inclusion in every environment that he is a part of, and we will challenge the previous generation’s ways of thinking about people who have different abilities.

Most of all, we will celebrate and enjoy this handsome, hilarious, compassionate, bossy little boy whom we have the incredible privilege of parenting. We are the lucky ones.

Low muscle tone is a common issue in people with Down syndrome. Specifically for Zeb, this meant that he had trouble sucking from a bottle and so we had to come up with special, thick formula to help him learn how to suck without making the formula too thin so as to not choke him. His low muscle tone also made it difficult for him to stand without support or hold his head up long enough to learn to crawl. However, we had an amazing physical therapist who encouraged him and pushed him just enough each session that he quickly caught up. He’s been home for a little over a year now, and the difference is astounding. Zeb can walk, go up and down stairs, push himself along on a bike, eat with a spoon, and so much more. There are no limits for this kid! Someone once told us that Zeb would be able to do everything other kids could do, but he would take the scenic route.

I don’t mean to make light of all of it because there are some parts of our life that wouldn’t exist if we didn’t have Zeb in our family. It can be overwhelming to have four to six therapists coming in and out of our house each week. It’s nerve-wracking seeing a small rash on your child and have your mind immediately assume the worst and believe it might be leukemia.

Spending hours researching different teaching methods for potty training, walking, swallowing, and more can be confusing and time-consuming. Having to schedule and be on time to so many appointments with specialist and doctors can get old very quickly.

However, everything is doable, and it’s totally worth having the privilege to parent such an amazing and precious little boy.