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.
'This Was All Training for One Central Idea'
SPIEGEL: Being able to communicate with your child is certainly a very deep desire for all parents. This must be particularly hard for parents of autistic children …
Solomon: Oh, yes. Take the case of Cece for example. She only uttered words four times in her life. The first time -- she was three years old at the time -- she was given a cookie, and she pushed it back to her mother and said, "You eat it, Mommy." Then she remained mute until, one day, her mother turned off the television, and she said, "I like the television on." Another three years later she asked in school, "Who turned the lights off?" Then at some point, there was a puppeteer at school, and he said, what color is the king's cloak, and Cece answered, "purple."
SPIEGEL: And after that, she never uttered a single word again? How horrible!
Solomon: Yes, I think it is the most terrifying experience that you could have as a parent. With children who have never said a word, parents tend to assume, for better or for worse, that there isn't any language there. But what do you do with a girl like Cece? What does she understand? What does she wish to say to us?
SPIEGEL: Cece's parents tried everything to cure their daughter's condition. They experimented with various diets and vitamin cures, and they administered at least a dozen different drugs -- without any obvious effect. Is all this in the interest of such a child?
Solomon: There is neither a cure for nor a way to repair autism. There is no implant like there is for the deaf. Some autistic people may emerge from their condition, but nobody knows when and why. It's the lack of knowledge and understanding that's so troubling for parents: Will therapy be traumatic for my child? Is the chance that it will help my child great enough that it would be a good idea to try it? In a lot of areas the answer to such questions is very straightforward, but when it comes to autism we live in total chaos.
SPIEGEL: Nearly all of the parents you met claimed that, despite all of their despair, they would not want a life without their children -- that there is some meaning in the disability of their child. Does this sound convincing to you, or do they just rationalize because they wouldn't be able to bear this kind of life otherwise?
Solomon: When I started off on this project, I thought this to be a very important question: Is there a meaning? Or are they talking themselves into some ridiculous fiction? And what I came away from the project with was the understanding that it actually doesn't matter. What matters is whether you perceive it to be there. And that in effect, if you can manage to say, I would never have chosen this experience, but I found meaning in it, you can be a better parent to your child than if you spend your whole time in a state of rage at the hand that was dealt to you by fate.
SPIEGEL: At least in the case of prodigies, which you discuss in another chapter, one can imagine that parents might see their child's otherness as a gift…
Solomon: Not necessarily. One of the most surprising findings in this research was that what looks like such a tragedy can actually be invested with meaning. And that on the other hand what looks desirable can turn out to be a nightmare. What's decisive is the fact of difference, rather than whether the difference is a positive or a negative one. Families with prodigies are faced with a child they don't really understand.
SPIEGEL: And you seriously think that is as challenging as having a disabled child?
Solomon: It is definitely less sad, but it is equally difficult. I had a remarkable conversation with the mother of Drew Peterson, who is a successful pianist now. I asked her what his brother's life had been like next to such a genius. And she answered: "It was a bit as if he had a brother with a wooden leg."
SPIEGEL: There is still another condition that we were astonished to find among your collection of otherness: Why did you include criminal behavior? In contrast to all the other traits, criminality actually does run in the family in many cases.
Solomon: We used to say homosexuality was caused by overbearing mothers and autism by emotionally distant ones. We blamed parents for causing schizophrenia, even deformity. We don't say that anymore. But when it comes to crime, we continue to blame parents. There is no question that abuse, drugs and exposure to violence at home can exacerbate someone's criminal tendencies enormously. But there are many, many criminals who don't come from that background, and I felt like that was the story that needed to be told.
SPIEGEL: As in the case of Dylan Klebold, one of the two gunmen who killed 12 students and one teacher at Colombine High School before shooting themselves?
Solomon: Exactly. I spent a good 30 or 40 days with his parents, Tom and Sue Klebold, over a period of seven or eight years. And the more I got to know them, the more I liked them. I would have been perfectly happy to have those people as my parents. In the end I thought: If these people could have a child who did this thing, then this could happen to any of us. And that's very scary. I no longer have the reassuring sense that if I do a really good job as a parent, they'll not end up doing something violent and terrible and destructive.
SPIEGEL: Even worse is that those parents are not likely to attract public sympathy …
Solomon: … which is very hard for them. For Dylan's mother it was an enormous relief that she could talk with somebody about her son as a child. She said to me: "You can't imagine how long it's been since I got to boast about my son." Even after all that he had done, she said, I don't want to imagine a life without him.
SPIEGEL: All the suffering you write about in your book should be enough to make anyone have second thoughts about having children. Yet you write that your book helped subdue your own anxiety about becoming a father. Can you explain this?
Solomon: I was in fact anxious about whether I would be any good at being a father. And then I met so many people who had been good parents under such difficult circumstances, and I felt inspired by them.
SPIEGEL: Did your being gay contribute to your anxiety?
Solomon: I had always wanted to have children, so it caused me a lot of grief when I was younger, and I had supposed that gay people could not be parents, and the research for this book was liberating, and helped me to see that anyone can be a parent. I spent years thinking I had to make a choice between being true to myself and being with a man and not having a family, and trying to live something of a lie and being with a woman and having children …
SPIEGEL: … until suddenly you saw a way to combine both: being a father and living with a man.
Solomon: Yes. The world changed, and the idea of having a family became feasible for homosexuals. But I was still left with the question as to what it would be like for a child to grow up with gay parents. Here I found it very comforting to see that there is no such thing as a completely normal family. People find their way through whatever the differences may be.
SPIEGEL: One could certainly not call your family normal. You yourself speak of five parents having four children …
Solomon: Yes, everything started when Blaine, one of my closest friends, went through a difficult divorce and said she was very sad about not having children. And I brightly said: "If you decide you want to someday, I'd love to be the father." Then I met my partner John, who already was the biological father of a son, Oliver, with some lesbian friends in Minnesota. The next year, the lesbian couple decided to have another child, and so along came Lucy. In the meantime my friend Blaine said to me, "I thought about it, and I really would like to do this." So I have little Blaine, who lives in Texas with her mother.
SPIEGEL: Which only accounts for three of the children...
Solomon: … right. The fourth one is George. Because once John and I got married, we wanted a child to be with us. So George is our full-time child, he is four years old now. I am his biological father, we had an egg donor, our surrogate for the pregnancy was Laura, the lesbian mother of Oliver and Lucy, to whom John is the biological father.
SPIEGEL: And has all the research for your book helped you to raise your son George?
Solomon: I felt like all of the work was training for just one central idea: Accept your child for who he is. I'm not saying that I've done a brilliant job with that. But I've done my best.
Interview conducted by Johann Grolle and Julia Koch