My friend Dr. Brian Skotko has been a leader in conducting research on individuals with Down syndrome. While he is probably best known for his work on sibling issues (he has a sister with Down syndrome), he is also a respected pediatrician at Children’s Hospital of Boston and he has published research findings related to diagnosis and prenatal diagnosis. In his recent blog post “Let’s Get Real About Down Syndrome”, he shares some of the findings from a study started six years ago with Sue Levine and Dr. Goldstein. There were 3,150 families/individuals involved in the study. This is a sample of what they found:
- 99% of people with Down syndrome said they were happy with their lives
- 97% of people with Down syndrome liked who they are
- 99% of parents said they love their child with Down syndrome
- 5% of parents felt embarrassed by their child
- 97% of brothers/sisters, ages 9-11, said they love their sibling
*All of the surveys’ results have just been published in the American Journal of Medical Genetics.
My Rachel is but 12 years old. She knows she has Down syndrome. She doesn’t fully understand what that means. Does anyone? She assists in giving talks and she says, “I have Down syndrome and this is what it means.” Sometimes she says she doesn’t have it anymore. I suspect there will be days when she tells me she doesn’t want to have Down syndrome, and we’ll navigate through that part of our journey. But today, September 27, 2011 I can tell you she is a happy, determined and successful young lady. She has close friends and acquaintances. She is involved in the same kinds of things her friends are – CYT (Christian Youth Theater), dance, cheerleading, church, choir, homework, parties, ballgames and school clubs. She has chores and gets a small allowance for doing those chores. I ran into her new Sunday school teacher at Target and she said, “She really is just like all the other girls and they treat her that way.” I smiled on the outside and giggled on the inside. One of her electives this quarter is Communications Media. She loves the class. She immediately told the teacher, who is also the theatre teacher, that she has been in 10 plays and she is “good” in front of the camera. Self-esteem doesn’t seem to be a problem. This week, she had to complete a form for the class for a presentation she will do next week. Some of the questions are amusing and some compliment Dr. Skotko’s work.
“What do you love about middle school?” 1. Lockers. 2. Lunch. 3. Friends.
In 10 years you will see me …. “at KU in college.” Her daddy and I are lobbying hard on this one. We want her to be a Hog!
Finally, my favorite uncoaxed question and her answer: “I am unique because…”
“Jesus made me.”