Behind Closed Doors: Down Syndrome

While many aging parents rely on offspring to become their caretakers in later years, parents whose children have Down syndrome often have a different story. The needs of adults with the disorder can extend the years of direct parent involvement — making it almost endless. Two parents of children with Down syndrome, including U.S. Rep. Eleanor Holmes Norton, a democrat from Washington, D.C., share their stories.

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MICHEL MARTIN, host:

And we're going to switch gears here quite a bit. We're going behind close doors for a conversation on living with Down's. It used to be that being born with Down syndrome was an early death sentence. Most people died in early childhood. But now, with medical advances and the decision by most families to raise kids with Down syndrome at home, many are living well into their 50s. But that raises the question: How do families take care of someone through adulthood?

There are about 350,000 people living with Down syndrome in the U.S. today, and we have two mothers here to talk about how they cope with their children growing older. Joining us by phone is D.C. delegate Eleanor Homes Norton - she represents the District of Columbia in Congress and her daughter Katherine, now 36, has Down syndrome - and Audrey King Ruby's son Hiley(ph) turns 17 today. In fact, Happy Birthday Hiley. Audrey joins us from her home in New York City. She is the mother of three children.

And congresswoman, let me start with you. And thank you so much for joining us.

Delegate ELEANOR HOLMES NORTON (Democrat, District of Columbia): Of course.

MARTIN: Did you know immediately that Katherine had Down's, or did you know before she as born that she had Down's? And what were you told about how long you were likely to have her with you?

Del. NORTON: Well, I didn't know until she was born. The obstetrician came in with my husband and indicated to him that he thought that that was the case, and was, of course, stunned. I had no idea. And, of course, they did this test to see first whether or not it was Down syndrome, and the see whether it was hereditary. It took about 20 weeks before we knew for sure that she did have Down syndrome. By that time, we had completely bonded with this child, as I think any mother and father would.

But what astonished me more than learning that she has Down syndrome was that he instantly suggested that if we wanted to give the child up. We thought that was an extraordinary idea. Why would we want to give our child up? I tried not to be insulted in it. I do think, though, it reflected the thinking at the time.

MARTIN: Did you feel pressured to do so? Was that considered to be the custom?

Del. NORTON: We were not like many people who have children who have some kind of disability, who are poor, who are hardly able to care for children themselves. So we thought that it was inappropriate for us to even consider giving up our child, although we could imagine that there would be circumstances in which a single mother - or for that matter, of family would find it difficult to raise such a child. I wouldn't see how I acted conceivably having thought to be the case for us, and this was our first child. All we knew is that this is our child, and we were glad to have her.

MARTIN: Audrey, what were you told about what to expect about how long he would be with you and what will he would be able to do?

Ms. AUDREY KING RUBY: Similar to the congresswoman, they asked us whether we wanted to give him up for adoption. The picture that they painted of him just 17 years ago - we didn't expect him to do anything. We just expected to take this baby home, and that was it. Quite on the contrary, he was smiling. He gooed. He lifted his head. He was moving around, you know. But the social worker at that time had given us a very bleak outlook as to what to expect.

MARTIN: What future do you envision for Hiley?

Ms. RUBY: You know, the same as his older siblings. We just want him to be a happy, productive member of society.

MARTIN: Congresswoman, I wanted to ask you, because you've been a parent little longer, and you still - you know, you're very active, honestly. You're very busy. I think it's even hard to describe for people how many demands there are placed on a member of Congress, all the meetings and all the, sort of the time demands. And at a point in your life when other people would be able to slow down, you really can't. And I wonder, does ever cost feelings for you?

Del. NORTON: Member of Congress sometimes have to leave very early in the morning. Sometimes you just don't know what you're going to have to do the next time, so there is a wonderful person who comes in in the time to get her out, then she goes home. Then she comes back until I return. So I'm never bothered about what Katherine's going to do. When I come home, Katherine sits in the room with me while I do my work.

We have a television on, we - and I sit in an easy chair with my laptop and - more often with my yellow pad writing and working on stuff. As I come on television, she will say, oh, mommy. You know, I've been on some news program. She recognizes me, and we'll look up to see that. But in a real sense, her life with me is about what it would be if my daughter had lived with me in any case, except that she needs somebody to help her get out in the morning and somebody to be with her in the evening until I am home.

MARTIN: Congresswoman, I know you have to go, so for someone who is just starting out on the journey that you've been on now for a while, can you offer a couple of words of advice?

Del. NORTON: Well, first of all, I don't think everybody needs to make the kind of arrangements I have made to take care of a child. There are good - and particularly given the abilities of the particularly Down syndrome person that may not need that, state does have a responsibility. So nobody should think, oh, my God. I got to go - I've got to make sure I structure what little bit of money I have so as to take care of somebody for the rest of their lives.

Seems to me, the only obligation of a parent - once a parent has done all the she can, all that he can for a child, and both parents are responsible - is to make sure that the child as an adult is probably cared for, and that the state -if the state is to have the major responsibility, because SSI, social security, disability does cover that - that the State, in fact, has probably placed that Down syndrome person and no abuse is occurring and that person is happy where that person has been placed.

MARTIN: Congresswoman, thank you so much for joining us.

Del. NORTON: My pleasure.

MARTIN: Audrey, I want to ask you to stick with us with just a couple more minutes, and just tell me what plans are you making now for Hiley?

Ms. RUBY: Well, that absolutely has been foremost in our minds. And we have told his siblings as far as plans that we have for him as we do for all our older children, what we have for them is giving them their education or help pay for support their education. For as far as they want to go, the rest is up to them. Everything else will have to go to Hiley, whatever finances, because we really don't know what he may or may not be able to do as far as to support himself.

We don't want to see him in an institution. We have all our assets that we have, it has been willed to him. We have named his sibling - they're younger, 21 and 25 - as executor, along with - his godmother happens to be an attorney - to have a third party, to make sure he has the same quality of life after we're gone.

MARTIN: What advice would you have for a parent who's just starting out on the journey that you've been on for 17 years?

Ms. RUBY: It really is a personal choice. It's no different than your choice of having a child. It's a lot of time. It's a lot of love. There's no different than your choice of to have child, be it normally developed or not.

MARTIN: Okay, Audrey. Thank you so much for speaking with us. Audrey King Ruby is the mother of Hiley, as well as to other wonderful children. She joined us from her home in New York. And we we're also joined by Eleanor Holmes Norton. She is the Representative of the District of Columbia in Congress, and her daughter Katherine is 36.

Thank you for joining us.

Ms. RUBY: Thank you.

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