Science of Parenting 'There's No Such Thing as a Normal Family'

For his new book, author Andrew Solomon spoke with parents who have children completely unlike them -- with autism, Down syndrome or dwarfism. SPIEGEL spoke with him about his findings and how they changed his parenting.

DPA

Interview Conducted By Johann Grolle and


SPIEGEL: Dr. Solomon, in your book you write about Jason Kingsley, who was a child star on "Sesame Street." What's so fascinating about him?

Solomon: Jason was the first person with Down syndrome to become a public figure. His mother Emily was shocked when he was diagnosed. There were no models for how to bring up such a child. Should they institutionalize him? Should they keep him at home?

SPIEGEL: We are talking here about the 1970s …

Solomon: Yes, when early intervention was still a new idea. So she developed this scheme of constant stimulation. She had his room covered in brightly colored things. She talked to him all the time. She even gave him a bath in Jell-O, so that he could feel that texture. And he did, in fact, develop extraordinarily. He talked early, counted and was able to do a lot of things that children with Down syndrome had been thought unable to do. And so his mother went to "Sesame Street," and said, "I would like to put Jason on the program." The people at " Sesame Street," who were in many ways liberal visionaries, agreed to have him on.

SPIEGEL: Are you saying that parents can overcome such an impairment of their child if they only try hard enough?

Solomon: Yes and no. Jason did accomplish an extraordinary amount, but he also has many limitations. His mother said to me: "I made him into the highest functioning person with Down syndrome there had ever been, but I did not know that I was also setting him up for quite a lot of loneliness, because he's too high-functioning for most other people who have Down syndrome, but he's not high enough functioning to ever have an equal relationship with people who don't."

SPIEGEL: You met hundreds of families for your book: Some are dwarfs, others are schizophrenic, autistic or deaf. Still others have committed crimes or they are prodigies. Do they have something in common with Jason Kingsley?

Solomon: I think so. I wanted to find out: How do you as a parent make peace with having been given a child who is in some sense completely alien to you? With having a child who is different from everything you would have fantasized? Emily Kingsley wrote a piece called "Welcome to Holland," in which she laid out the idea that having a disabled child is as if you were planning a trip to Italy, and you ended up by mistake in Holland. It's less flashy, it's not where all your friends are going. But it has windmills, it has Rembrandts. It has many things in it that are deeply satisfying if you allow yourself to be awake to them, instead of spending the whole time wishing you were in Italy.

SPIEGEL: And the same applies to the parents of autistic children or criminal offenders?

Solomon: My fundamental idea is that there are many identities that are passed down generationally, like nationality, language, religion or the color of one's skin. But there are many times when a family is dealing with a child that's fundamentally different from anything with which the parents have had previous experience. People with Down syndrome are by and large not born to other people with Down syndrome.

SPIEGEL: Such an experience is not, of course, limited to parents of children with a disability. During puberty, most parents have the experience of their children becoming somewhat alien to them.

Solomon: To some some extent, yes. I got a letter recently from someone who wrote to me quite earnestly: "You talked about so many ways in which children can be different from their parents. But I am disturbed that you did not mention an experience like mine. I'm discovering that while I love dogs very much, my child is not a dog person." Parenthood always involves recognizing your child as separate and different from you. By looking at the more extreme examples I try to illuminate the general experience of parenting.

SPIEGEL: You describe a lot of difficult conditions kids can have. If you had to pick one for your own child: Which would it be?

Solomon: Well, I would certainly not want my child to be schizophrenic. I wouldn't want him or her to be a criminal either. If, on the other hand, I had a deaf child, it would help that I have developed a real admiration for Deaf culture.

SPIEGEL: So this means that you do have some scale of severity in mind?

Solomon: Some conditions seem more frightening to me. But I've met other people who were frightened by different ones than I am. One of the mothers I interviewed described being in a hospital elevator with her daughter, who is a dwarf, and someone else got onto the elevator who had a child with Downs yndrome. She said she was looking at this woman thinking: "I can deal with mine. But I could never deal with yours." And then she looked up and saw that that was exactly how the other mother was thinking about her. I think one deals with the cards one is dealt.

SPIEGEL: Schizophrenia and criminal behaviour, you said, are particularly frightening to you. Is this because both appear late in adolescence?

Solomon: This is possible. Because by then you think you've gotten to know your child and assumed a certain life course. If you are dealing with a disability from a very early stage, it may be easier to figure out how you're going to make the best of it. And the child in that very early stage is not aware of these subtle emotional nuances and shifts, and so you don't hurt your child so much with that early ambivalence.

SPIEGEL: You consider deafness a much less frightening disability. Can you explain why?

Solomon: I love to communicate, and I love music. That's why I always thought not being able to hear would be a tragedy. But then I went to the Deaf theater. I went to Deaf clubs, I went to the Miss Deaf America contest in Nashville. And I found out about the wonderful world of sign language. I suddenly realized: If we as a society recognize Jewish culture, gay culture and Latino culture, we must recognize that this is a coherent culture, too. I think deafness is a disability for social constructionist reasons.

SPIEGEL: In contrast to many other disabilities, there is a kind of cure for deafness, the cochlear implant. Many activists are very opposed to it though …

Solomon: … yes, their concern is that what's so extraordinary about their culture is going to disappear from the world. I share their regret. But I think you can't deny that because the cochlear implant exists, the signing world is shrinking. Therefore if someone says: "I don't want to have a cochlear implant, because I want my child to grow up with a rich sense of deaf culture," he must acknowledge that the deaf culture that exists in the world today has a different scale than the deaf culture that's likely to exist in the world 50 years from now. And you have to think about whether you're consigning your child to a shrinking world.

SPIEGEL: There was a lot of debate about a deaf lesbian couple in the US who chose a deaf sperm donor for their two children. What are your thoughts on that?

Solomon: Those were women who wanted children who are like them. I think that's a very human impulse. It is the same as a so-called normal, white family who goes to an egg donor agency, saying: "We want a white donor." I think it's up to the parents to determine whether what they're doing is consigning their child to difficulty. It's not as though they were crippling their children after they were born.

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