Real Family: Raising a Child with Down Syndrome

Q. What helps Mark get through some of the day-to-day struggles?
A. One of the hopeful things about having a child with a disability in this day and age is that there are so many services. From the time Mark was born, he was getting physical therapy, speech therapy, and occupational therapy, and he's in a swim class. All that extra stimulation helps children with Down syndrome perform pretty close to where other children perform.

Q. Now that Mark has turned 2, what are a few of his likes and dislikes?
A. Whenever his big brother, Luke, walks into a room, Mark gets very excited and starts laughing and clapping. Social interaction is his favorite thing -- especially with his brother. Mark's a toddler now and moves around so much because he doesn't like to be confined. He also doesn't like me or my husband, Patrick, to tell him no -- all the normal things that toddlers dislike. He really does like to eat his vegetables, though, which is unusual!

Q. How do your sons relate to one another?
A. When we brought Mark home from the hospital, Luke was not quite 2. The first thing Luke did when he saw us was point to Mark and say "baby." Then he reached over and gave Mark a big kiss and a hug. From that point on, they've been wonderful together. Luke always wants to help with Mark's therapies. He encourages him -- he says, "Go, Mark" and "Come on, Mark" and claps for him. There's nothing nicer than when my husband and I see Luke put his arm around Mark and say, "You're my best friend, Mark. I love you."

Q. How is raising Mark different from bringing up Luke?
A. There are different struggles and worries that my husband and I have with Mark than we had with Luke. But there are also different rewards and joys. With Mark, we have to work so hard for him to do certain things that when he actually accomplishes a goal, we're just so excited. When he crawled, it was like the president came to visit us, and when he took his first steps, we cried. And it's not that we didn't notice and weren't happy with those things when Luke did them. We just didn't realize how much it took -- how many things had to go right for that to happen.

Q. What has Mark taught you and your husband about being a family?
A. Mark's having Down syndrome has forced us to focus on the fundamentals -- what's really important in life -- and that's often all the small things. I think that people tend to get caught up in thinking that their children are extensions of themselves. Having a child with Down syndrome or any disability helps you focus on maximizing whatever his abilities are going to be.

Q. Do you recommend that other parents in similar situations seek help?
A. I do. I used to think that if you went to a support group, it meant you couldn't handle things yourself. But after going to one, I realized I was completely wrong. It's always good to be with people who are sharing like experiences -- they've been there and done it and can give you some instruction on how to do it and what to look out for.

Q. Is there any misinformation about kids with Down syndrome that you want to clear up?
A. When we first found out that Mark had Down syndrome, I read online that children with it don't walk until age 3, and that's just not true. Because of a lack of research money, up-to-date information is hard to come by. What you read may be outdated and not apply to what your child will accomplish with the services that are now available. Plus, every child is unique, and you cannot paint a whole group of kids with the same brush just because they all have Down syndrome.

Q. What would you like to tell moms-to-be who are having a baby with Down syndrome?
A. It's a whole new world, but it's not the end of the world. Love the baby, get to know the child, and don't worry about his or her diagnosis. There's a 30-year-old woman with Down syndrome in our support group, and she has a driver's license and a college degree. When you're speaking with her, you have to remind yourself that she has a disability. That's such an inspiration for my husband and me, because we dream that Mark will be that way one day.

Originally published in the July 2008 issue of American Baby magazine.

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