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‘Raising a child with Down syndrome’

July 7th, 2008

From American Baby magazine, a Q&A with the mother of 2-year-old Mark Radel, of West Winfield, New York. Mark has Down syndrome, and his mom says he is “within the milestone range for a normal child.”

Mary shares some of the details of their lives. Here’s a sample:

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 What you read may be outdated and not apply to what your child will accomplish with the services that are now available.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.

2 Responses to “‘Raising a child with Down syndrome’”

  1. Kathy Ratkiewicz Says:

    I think that it is wrong to base a baby’s right to be born on their projected level of ability (or disability).

    People with Down syndrome who do not achieve milestones at ‘normal’ levels still can and do have very worthwhile lives.

    When my son was a baby, I comforted myself by dreaming that he would be the next Ds ’superstar’. But as he has grown, I have learned that I love him for who he is, not what he can do. I think that a lot of parents are that way. We are excited and proud when our kids achieve new milestones, but they don’t have to prove their worth to us.

    I think that it is wonderful and encouraging to read of people w/Ds who marry, drive, go to secondary education programs, etc. But it is also important to remember that their lives aren’t any more valuable than those individuals who may not be capable of doing those same things.

    When my son was a baby, I used to get pretty depressed thinking about his future. I would look at adults with Down syndrome and wonder how I would feel if I was their parent. My son is 10 now, and I know how I would feel … based on how I feel about him now, I would love him, be proud of him, and enjoy his company. That is what we need to tell new or expectant parents. Lots of us had doubts and fears when we got the diagnosis, but once we got to know our child, we knew we would love them no matter what their level of ability was.

  2. Kevin Says:

    One has to remember that not all children with Down Syndrome will be “in the milestone range for a normal child.” I also take offense to the term ‘normal.’ My son is normal, he just happens to have Down sydnrome. A better term is typical.

    He also didn’t walk until he was 3 1/2 and based on his disability will not likely ever have a driver’s license or a college degree. It is great to have hope, but there is a whole range of severity to the physical and intellectual challenges facing people with Down syndrome, and within the community there are many new parents that spend os much time trying to make their kids “typical.”

    Many families struggle with significant issues with their kids with Down syndrome, so painting a rosy picture of the disability is not always constructive for those who face much greater chellenages than you, so far, appear to be facing.

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