When our son Ryan was born with Down syndrome, we refused to accept limits. Our journey has been a humbling one. Here's what I've learned about helping children grow through challenges and setbacks.

By Maura Senneff
January 14, 2021
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The author and her son, Ryan
The author and her son, Ryan
| Credit: Maura Senneff

Ever feel like you're running on a hamster wheel, using huge amounts of energy, but going nowhere? We used to feel this way with our middle son Ryan, 8, who was born with an extra copy of chromosome 21: Down syndrome.

For the first six years of his life, Ryan's health was tenuous. He had one acute infection after another. He was lethargic and sick. We were constantly trying to triage pneumonia, eye and ear infections, an extremely low white blood count, horrible kidney and liver function, poor absorption of vitamins and minerals, chronic constipation, one surgery after another, and more. He essentially could not participate in life.

Studies show Down syndrome manifests itself as an autoimmune disorder, bringing with it a wide range of health challenges and developmental delays. And everywhere we went, the story we heard about Ryan's future also focused on limits. Doctors told us he would likely be in a diaper his whole life.

When your child receives a diagnosis—any diagnosis—it can feel like people are putting them in a box. "It's just part of the deal with medical diagnosis X," "kids with diagnosis Y will experience developmental delays," "diagnosis Z generally limits a child's ability to…" The list goes on.

But I have come to understand that a child's trajectory is not fixed. By pushing traditional "limits" and seeking out-of-the-box care, Ryan has made remarkable progress, inspiring physicians and families to go back to the drawing board.

Today, while he is still working hard to overcome some persistent health challenges and learning splinters, Ryan is at or near grade level in every subject. He is riding a bike without training wheels. He is skiing. Currently, he's even teaching his younger sister, Catherine, to tie her shoes.

Every family, child, and diagnosis is different. This is not a competition. But Ryan has taught our family critical lessons about fighting for your children, their health, and their future. Here, the lessons I believe all parents can benefit from when facing challenges or medical diagnoses.

Look for Answers, Not Limits

Clinical studies on Down syndrome tend to focus on limits. Plus, up until recently, funding for Down syndrome has been sorely lacking, in part due to the advent of early prenatal testing for the condition.

But the most important shift we made was in choosing to view Ryan as a little boy with a bunch of chronic illness issues that we could work to improve. This approach led us to ask questions no one was asking and get results we hadn't otherwise been getting.

When physicians' faces glazed over with that, "that's just part of the deal with X diagnosis" statement, I started asking, "what would you do if Ryan was your son?" I've asked that question more times than I can count. It always yields a better answer.

Instead of accepting limits, we have gone back to the drawing board many times, attacked problems from new angles, brought in new plans and ideas, and have produced new outcomes because of it. We needed to: As Ryan got older, developmental gaps widened at school; he didn't have the language to communicate with his peers.

Sometimes, this takes trial and error. We went through three applied behavior analysis (ABA) therapy teams to find the right Ph.D. behavior therapist. Often people think ABA is reserved exclusively for children with autism, but it has worked for us. And the hard work of finding the right therapist paid off.

Be Open-Minded

If what you are doing is not working, it's time to be open to changing up your game.

A few summers ago, I ended up in a traditional Chinese medicine doctor's office after breaking my foot. Though I admittedly wasn't a believer in Eastern medicine, I was desperate to try anything. One day I started venting about Ryan's constipation. The doctor told me she believed that he was not absorbing vitamins in his food. She thought that once his stomach was stabilized, other systems in his body might improve. We had nothing to lose. What we were doing was not working.

This doctor treated Ryan with acupuncture and, like a nerd with a highlighter, I started reading books on traditional Chinese medicine. Paired with the ABA therapy and the medical care he was already receiving, Ryan made more progress than we ever imagined.

Thanks to this open-minded mentality and the work we have done with different doctors, experts, and therapists, Ryan's social language, eye contact, play skills, and development have all improved. His kidneys have gone from both way too small to growing normally, he's avoided subsequent eye surgeries, reduced his risk of sleep apnea, avoided tonsil and adenoid removal surgeries—the list goes on. Most importantly, for the first time in his life, Ryan is healthy, strong, and confident because he has acquired the language to communicate with his peers, ask for help, and tell jokes.

Learn From Others

You don't always have to reinvent the wheel. We have spoken with many friends, acquaintances, and people in similar positions who are ahead of us in the game to see what has worked for them and what hasn't. Learning from others has been critical.

Set the Bar High

There were many years when Ryan had trouble engaging or playing with peers. But Ryan's other brother JP, 11, sets the bar high for him. One day last fall, I came outside to see JP and Ryan in roller blades. JP had laid his hockey stick on the driveway and was saying, "OK, next I want you to take your right foot and do a jump cross over this hockey stick!" I instinctively yelled, "Hold on, JP, it took you like a year to learn that move!" JP yelled back at me, "Yeah Mom, but Ryan is doing amazing." I got the moment on video because I was so moved.

JP has taught Ryan to play lacrosse, touch football, soccer, kickball, and he even quizzes him on his spelling words.

My husband, Jack, figured out Ryan has a pretty good arm in football.

Ryan has taught us that any child will rise to the limits you choose. High expectations and encouragement have had a compounding effect on Ryan's confidence.

Focus on the Person, Not the Diagnosis

Jack and I treat Ryan exactly like we treat our other two kids, instilling confidence that their future holds infinite possibilities when you work hard and try new things. We, of course, have boundless joy and pride when Ryan masters a milestone because he had to work a thousand times harder, but we treat all of our children like the unique individuals that they are.

What defines Ryan? He skis in the trees in Colorado, plays lacrosse, and he has tons of buddies. When he brought in his ski helmet and goggles to show his preschool class he learned to ski at age 3, he kept saying "I'm a skier!" And that was my goal all along: Rather than "Ryan with Down syndrome," he now had a huge feather in his cap: He was a skier.