As executive director of the Global Down Syndrome Foundation (GDSF), Michelle Sie Whitten is dedicated to promoting research of a common birth defect that has touched her family. She recently sat down with ABILITY’s David Radcliff to discuss the aims of her foundation, and the role Down syndrome plays in both her work and home lives.
David Radcliff: How would you explain the work you do at the foundation?
Michelle Sie Whitten: We’re unique in our ability to fill a void of information about Down syndrome. Historically, there have been good parent-outreach organizations, but there hasn’t been a nonprofit that specifically treats research and medical care as core competencies. People with Down syndrome now live into their 60s, so there’s a significant need to revisit the research and medical care.
Radcliff: You got involved in this cause because it directly impacts someone in your family.
Whitten: That’s almost always the case, isn’t it?
My first child was born with Down syndrome in 2003. At 19 weeks into my pregnancy, I got the terrible prenatal diagnosis, and later I had the day-to-day experience of raising a child with intellectual and developmental challenges. I set out trying to find whatever information was available. I wanted to learn how I could give my daughter every opportunity.
Radcliff: How much did you know about Down syndrome before the diagnosis?
Whitten: Nothing. In fact, I had never met anyone who had a disability. Looking back, I wonder whether that was because people with disabilities had been segregated at the time, or because that was just a reality of where I went to school.
From a young age, I’ve been passionate about correcting discrimination and fighting inequality in areas of gender, sexual orientation and cultural bias. Having a child with Down syndrome, in a strange way, expanded my interest in human and civil rights to an even greater degree.
Radcliff: What would you hope to convey to other parents who have recently had a child with the condition?
Whitten: I think the first thing to realize is that nobody can tell you what your experience will be. And you won’t know, until you go through it, how you’ll feel or function as a parent. By and large, people with Down syndrome are much more alike than they are different. But there are differences, especially in the first few years of life, that do need to be addressed with therapy and proper medical care.
Radcliff: What are some of those early medical needs?
Whitten: Approximately 50 percent of kids with Down syndrome are born with a congenital heart problem. If your child falls into this category, you’ll want to make sure to get him or her properly examined. The good news is that 99 percent of these heart conditions can be successfully treated.
Parents should also check out their child’s hearing. Kids with Down syndrome can experience significant hearing loss or what’s called “blue ear,” so it’s recommended that these kids get their hearing tested frequently. A failure to pick up on a hearing problem in its early stages can affect the clarity of the child’s speech or even his or her ability to speak.
Radcliff: It could also inhibit socialization.
Whitten: Exactly. So those are two examples of medical needs that parents should know about, and there’s a whole list of topics available from the American Association of Pediatrics, and then a more detailed list offered by the Down Syndrome Medical Interest Research Group.
At the Linda Crnic Institute for Down Syndrome in Denver, we’re working on a wonderful toolkit of
information that we’ll roll out to professionals. That way it won’t be completely incumbent on parents to figure out everything that is needed for a child.
People with Down syndrome are more like us than they are different, but they do have a unique set of challenges and a unique set of gifts. It is very important for a new parent to enjoy their baby, but also to address his or her medical issues. Though parents might feel overwhelmed, finding the right nurse or doctor can set a child on a trajectory towards successfully reaching his or her full potential.
Radcliff: As is true in the process of raising any child, there are all kinds of factors that might come into the picture that parents can’t foresee.
Whitten: Exactly. In the case of my daughter, for example, we were told by certain professionals that kids with Down syndrome don’t need speech therapy until they’re three years old. Then, when our daughter was about three, we discovered from another very reliable source, that you’re generally supposed to start a child with Down syndrome on speech therapy at 18 months. We felt that we had lost out a little bit on our daughter’s time and trajectory.
Often parents of children with Down syndrome tell us of strange prescriptions a doctor or therapist has given them. We’ve been quite surprised and, in some cases, shocked. For instance, some parents are instructed to hold their baby or feed the child a certain way that can actually be harmful. Unfortunately, consistent, up-to-date information about how to care for a child, an adolescent or an adult with Down syndrome doesn’t exist. There were materials published in the ’80s, but we’re dealing with a different reality today. The research needs to be updated and disseminated both to professionals and to parents. Professionals are clearly not getting enough data.
Radcliff: Do you think this lack of education has to do with the notion that, for certain disabilities, the expectations are already diminished?
Whitten: I think some people, even from within the medical profession, feel a family that keeps a baby with a prenatal Down syndrome diagnosis should bear all the responsibilities associated with the condition. It’s as if they’re saying: “You made your bed. Now lie in it.” With accurate information and research, more can be done to improve the health, lifespan and even the cognitive functioning of people with Down syndrome.
Since the human- and civil-rights movements of the ’60s and ’70s, there has, thankfully, been a generational shift as people have grown up alongside our children and have come to see them as people with dignity who deserve rights and medical care.
Radcliff: It sounds like your primary objective is to get information out to families.
Whitten: We’re here for the professionals as much as for anybody. Without funding for research—whether it’s research done by the National Institutes of Health or the State Department of Education—it’s very difficult for us to disseminate accurate information. So we take every piece of information that we have on Down syndrome, and attempt to reach valid and evidence-based conclusions that we can distribute to society, the press, parents and professionals.
There are people who say 50 percent of our children will experience an early onset of Alzheimer’s disease in their thirties and forties. There are some who say 100 percent will experience this, and there are some who say less. What is the reality? Clearly research could demystify this. The Down syndrome community currently lacks patient registries, databases and biobanks that would aid in biological research.
The benefit of being last to the table in this regard, is that we can look at those facilities that already exist and adopt their best practices. We can really make sure we are protecting and empowering people with Down syndrome and their families. Not all registries, databases and biobanks do that. There are cases in which the science may eclipse the people being discussed, and we’d rather not have that.
Radcliff: What are some of the myths about Down
Whitten: One of the most pervasive is that people who have Down syndrome can’t learn. You often hear, “Well, you know, she’ll never get beyond the mental ability of a five-year-old or an eight-year-old.”
Radcliff: That’s right in line with diminished expectations.
Whitten: Yes, it is. Sometimes the expectation is that this person shouldn’t even be given the right to live. Families who institutionalized their children were told, “Your kid is not going to be able to talk, read, walk or do any sports.” Clearly all of those things were false, and it’s hard not to shed a river of tears for those who are now gone. We can’t get them back. And they were so abused and so neglected during their life times. Even today, there’s a residue of that experience, as well as lingering uncertainty about what people with Down syndrome can actually accomplish.
When we held the first-ever national poll on the topic of how mainstream Americans view people with Down syndrome, we found the perception was overwhelmingly positive. I think that’s a result of Ted Kennedy and Tom Harkin, and all the people who really went to bat for the Individuals with Disability Education Act and the Americans with Disability Act. You see the fruits of their labor in our poll today. More than 80 percent of Americans strongly believe that people with Down syndrome have the right to live independently, get married and have jobs. In the 1960s, people would have said that people with Down syndrome should not be allowed in public places. So we’ve witnessed a huge paradigm change.
Radcliff: But I imagine there’s still plenty of work to be done.
Whitten: Absolutely. One of the questions in our poll was: “Should people with Down syndrome have the right to have children?” The results were interesting: People who knew people with Down syndrome said, “Yes, people with Down syndrome should have the same rights as the rest of us.” But many of those same people responded, “No” or “I don’t know” to the question of whether people with Down syndrome should be able to raise children. In contrast to this finding, respondents who didn’t know a person with Down syndrome responded: “Yeah, of course!” to the question about raising a child.
It’s troubling to me, as a parent of a child with Down syndrome, what something like that statistic suggests. If a person with Down syndrome isn’t capable of taking care of a child, how does that look to the broader community? Does that suggest this person is not capable, in general? How do we push the envelope in a safe way, as has been done over the last few decades, to a point where we can prove low expectations are, in fact, exceeded again and again and again?
The central issue is that we just don’t have the research. We’d love for the support behind Down syndrome to match that of autism and other intellectual and developmental disabilities. These groups have benefited from great studies about how their kids learn. In respect to Down syndrome research, the data is generally what is called “n of 1s,” meaning they’re drawn from a study of one person at a time. In these cases, the data shows, “Oh, Isabel can read,” and then, “Oh, Johnny can read at a first grade level.” It’s all these singular—
Radcliff: There’s no way to draw any kind of correlation or relationship?
Whitten: No. And it’s not being shown exactly why they’re able to learn. That’s the sort of information that could help create a toolkit for the teacher who, God bless him or her, is in the public schools and facing a poor teacher-student ratio. Over the next couple of decades, the 10 percent of students who require Individualized Education Programs (IEPs) will move closer to 15 percent. We need to help them. We need to have research. We need the research community and the medical community to see our kids with Down syndrome as equal to others and worthy of the investment. We need to take the results of that research and medical care, and feed it to parents and medical students and teachers. That would be good for everybody.
Radcliff: I want to go deeper into a subject that you brought up a little bit earlier: the “right to life” debate. I don’t want to get too political about it, but I don’t think that you and I can have this conversation and not bring up the topic.
Whitten: That’s a good point.
Radcliff: You are a parent who had to make a challenging decision, and I assume some people encouraged you towards one choice or the other. It seems that you’re very happy and comfortable with the decision you made.
Whitten: Republicans and Democrats alike have kids with Down syndrome. People who are pro-life or pro-choice have kids with Down syndrome. Our organization is like Switzerland—meaning neutral—in that respect. We don’t touch the issue. From a personal perspective, however, I’m not shy—and maybe I should be—about saying I’m pro-choice. I’ve always been pro-women’s health and pro-family health, but my own choice was to keep my daughter. Today it seems ridiculous to speak of the situation in those terms: My daughter is just my daughter, and she’s fabulous.
But, yes, there was a decision-making period that was challenging. I was catapulted into it when a blood test showed that I had a one-in-nine chance of having a child with Down syndrome. When I went to see an amnio doctor, I was shocked because they didn’t offer me any genetic counseling, and they should have. In fact, I found ..... continued in ABILITY Magazine click here to order a print copy or to subscribe Or get a free digi issue with a "Like" on our Facebook page.
Excerpts from the Quincy Jones Issue Oct/Nov 2011:
Bruyère, PhD — Creating Possibilities at Cornell
Virginia Jacko, CEO — Blind Visionary
Quincy Jones — Renaissance Man and More
Michelle Sie Whitten — Things Are Looking Up
Still Swinging — An Inside Look at Adaptive Golf
Workout DVD — First You Get Off the Couch
Humor Therapy — Coupons Are For Suckers
Articles in the Quincy Jones Issue; Humor — Coupons Are For Suckers;
Ashley Fiolek — 2011 Women’s Motocross Champ!; Sen. Tom Harkin — Working For More Jobs; Cinderella — A New Spin on an Old Tale; Still Swinging — An Inside Look at Adaptive Golf; Susanne Bruyère, PhD — Creating Possibilities at Cornell; Virginia Jacko, CEO — Blind Visionary; Meet the Biz — Actors Training Actors; PAWS/LA — The Sick and Elderly’s ‘Best Friend’; Quincy Jones — Renaissance Man and More; Michelle Sie Whitten — Things Are Looking Up; Workout Dvd — First You Get Off The Couch...; The Old Guard — A Change is Gonna Come; OCD — From Pain to Published Author; ABILITY's Crossword Puzzle; Events and Conferences... subscribe