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.

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. Continue reading

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