When I was working as a literary agent, I was connected with Rachel Adams via an old friend of mine from Yale grad school, Columbia professor and writer Jenny Davidson. Jenny is one of the most brilliant people I know, plus she has great taste, so Rachel’s manuscript got bumped to the top of my To Read list. Thankfully, I loved it. Rachel and I had many conversations and editing sessions over email, and eventually I sold her brave, wise, and touching memoir, Raising Henry, to Yale University Press, but we never met in person until she invited me to discuss The Anti-Romantic Child with her students at Columbia last spring. I’m thrilled that Raising Henry has now been published; here’s the description from the publisher:
Rachel Adams’s life had always gone according to plan. She had an adoring husband, a beautiful two-year-old son, a sunny Manhattan apartment, and a position as a tenured professor at Columbia University. Everything changed with the birth of her second child, Henry. Just minutes after he was born, doctors told her that Henry had Down syndrome, and she knew that her life would never be the same. In this honest, self-critical, and surprisingly funny book, Adams chronicles the first three years of Henry’s life and her own transformative experience of unexpectedly becoming the mother of a disabled child. A highly personal story of one family’s encounter with disability, Raising Henry is also an insightful exploration of today’s knotty terrain of social prejudice, disability policy, genetics, prenatal testing, medical training, and inclusive education. Adams untangles the contradictions of living in a society that is more enlightened and supportive of people with disabilities than ever before, yet is racing to perfect prenatal tests to prevent children like Henry from being born.
And as Rachel and I have become friends and mutual admirers, so have our younger sons. Five-year-old Henry and eleven-year-old James attend the same school, and James is simply enchanted with Henry: seeing Henry is a highlight of his day, he includes Henry in his nightly prayers, Henry’s being able to attend his school was one of two things he said he was most thankful for at our Thanksgiving dinner. And so my questions to Rachel are followed by James’ questions to Henry and to Rachel. Post a comment and be entered in a drawing to win a copy of Rachel’s wonderful book!
BY PRISCILLA FOR RACHEL:
1) Tell me about your son.
What I most want your readers to know is that to say Henry has Down syndrome reveals so little about who he is and what makes him tick. Henry is an adorable, vibrant, funny five-year-old boy. He loves pretzels, chocolate, ice cream, and spaghetti. He loves to watch episodes from the original Muppet Show, which he can recite word-for-word, acting them out with a puppet on each hand. Henry’s favorite person is his big brother Noah, who he thinks is the most interesting, talented, hilarious boy around. He has a great sense of humor and a big, joyful laugh. He thinks every cause for celebration is a birthday. If I have to go out of town, when I get home he runs into my arms shouting “happy birthday, mom!”
2) Tell us about your academic work and how it prepared you to be Henry’s mother.
Becoming Henry’s mother was a humbling experience because I realized that nothing about my academic work had prepared me to care for him. That said, I did have more resources than most parents who learn that their new baby has Down syndrome because I had spent much of my career studying the history and culture of disability. I had a lot of friends who were professors of disability studies, and they sustained me during the anxious and stressful first weeks and months of Henry’s life. Because of my research, I also had a head start on finding resources to educate myself about Down syndrome. But whatever help I got from my background in disability studies, more important was the fact that having Henry in my life has transformed my understanding of what it means to be disabled and the kind of work I want to do in disability studies. Henry has taught me so much, and I look forward to continuing to learn from him as he grows and develops.
3) What types of therapy or therapeutic approaches have most helped Henry?
Before Henry was born, I had never heard of the Early Intervention program. In the weeks after his birth, I was amazed to discover that New York State, where we live, was home to one of the best Early Intervention programs in the country, offering children diagnosed with developmental delays ages 0-3 therapeutic support to help them reach their full potential, while educating their families about how best to care for them (all paid for by the state). This program, which offered Henry speech, occupational, and physical therapy, as well as a special educator and a social worker for our family, made an immeasurable difference in lessening Henry’s developmental delays. I can’t speak highly enough of the talented, patient, resourceful, and generous therapists who came to our home to work with Henry and educate our family. Early Intervention is such a remarkable resource to families across the income spectrum, and I am dismayed to see it being gradually eroded by short-sighted budget cuts. We need to urge our legislators to do what they can to protect this valuable and endangered resource for the generation of children coming along behind Henry and his peers, and to preserve the dignity and well-being of the amazing therapists who offer their services through the program.
4) What is the worst, most misguided, offensive, or otherwise disturbing statement you’ve ever read or heard about Down Syndrome?
Henry is a charming, delightful person and we have been lucky to find ourselves surrounded by very supportive people who have embraced him and recognized his worth as a person. Looking at the wider world, I am sometimes appalled by the ignorance and misunderstanding of what it means to live with Down syndrome. Instead of sharing a statement, I will share a situation: the wrongful death of Robert Ethan Saylor, a man with Down syndrome who was killed by security guards attempting to restrain him when he refused to leave a movie theater after a screening of Zero Dark Thirty. Saylor’s death had everything to do with the lack of education and training offered to security guards, police officers, and others entrusted with public safety about how to deal with people with intellectual disabilities.
5) If you were invited to speak to a group of typically developing children of your son’s age in order to educate them about Down Syndrome, what would you want to tell them?
The most important thing I would want them to know is that Henry is mostly a kid just like other kids. He goes to school, has favorite foods and activities, and loves to spend time with his friends and family. Henry is likely to be able to do many of the same things as his brother, but he will probably do them more slowly. He is still learning to read. He can talk but sometimes it is hard to understand what he’s saying. And he needs help with doing things like getting dressed, putting on his shoes, and brushing his teeth.
6) What is Henry’s biggest fear or source of anxiety? What helps him cope with it?
Henry really is not a fearful person, sometimes to a fault. He loves new people and experiences and needs to be watched carefully because he does not know to be afraid of dangers like traffic, strange dogs, or subway platforms. That said, Henry can be overwhelmed by very loud, crowded places. In those situations, he will often turn to his puppets. Having a puppet on each hand and making them talk to each other is his way of tuning out an unwelcome situation.
Henry also hates to have his hair cut or his ears examined and cleaned at the doctor. For much of his life, we have just let him scream and cry through those situations. But as he grows up, we are more able to talk about what’s happening and prepare him with a conversation or social story. We are lucky that Henry is a very resilient person. No matter how awful the experience, he thinks it is hilarious to tell the story of it afterwards, acting out the parts where he screams and cries over and over again.
7) What is your biggest fear about Henry’s future?
As people with Down syndrome live longer and—due to better therapy, education, and health care–become more capable, I know they can experience loneliness and frustration. Being able to do so many of the things that typical adults can do makes them all the more aware of the ways their lives are limited, perhaps by not being able to drive, form intimate relationships, or find satisfying jobs. As we push Henry to develop to his full potential, I also worry that the more capable he is the more he might see how his life is less full than other adults.
8) What is your greatest hope about Henry’s future?
On the flip side of what I just said, I hope Henry will develop to his full potential and that will allow him to live a full, satisfying life—whatever that means for him—surrounded by people who love and support him. I’ve learned not to measure my hopes for Henry’s future by the conventional yardsticks and look forward to helping him find a life that allows him to flourish in whatever ways are right for his abilities and desires.
9) How is parenting a child with Down Syndrome like and unlike parenting a typically developing child?
The best advice I got just after Henry was born was from the author Michael Berube, whose son Jamie (also with Down syndrome) was 16 at the time. Michael reminded me that Henry was a baby first, regardless of diagnosis. One of the saddest misunderstandings held by expecting parents is the fear that their experience of raising a child with Down syndrome will somehow be lessened or ruined. Since I also have a typical child, I think I have a good basis to compare and can say that our experience of parenting Henry has been similar in so many ways—we feel the same love for him, the same joys and frustrations. We celebrate his accomplishments, try to work through his difficulties, and get just as mad when he does naughty things like writing on the couch or hitting his brother.
That said, Henry’s disability is real. His development is delayed and this means he is more dependent than a typical child. At age 6, he still needs us to help him get dressed and undressed, brush his teeth, and go to the bathroom. He is likely to wander off, so he needs to be watched closely. And because it is harder to understand his speech, we don’t have as much verbal communication with him as with his brother. He has also grown up surrounded by therapists and other adults working on his development. This means that his childhood has been more managed than that of a typical child and that we have spent more time contending with experts who have ideas about how we should be raising Henry. I’m not complaining: I’ve come to the conclusion that in an ideal world, all parents would have Early Intervention, regardless of whether their children are delayed.
10) What one thing can anyone do to help support people with Down Syndrome and make our society a more congenial place for them?
Support the right of pregnant women to complete and unbiased information about prenatal testing and its implications. I am a strong supporter of reproductive freedom. All women should have the right to abort a pregnancy for any reason. That said, I believe that much of the misinformation and prejudice about Down syndrome starts with pregnancy, an experience shared by the majority of women which is the primary (and often only) place that most people encounter information about genetic disabilities. When healthcare providers offer women limited and biased information about prenatal genetic testing, they stack the deck against people with Down syndrome and other genetic conditions. Bad information pushes more women toward abortion, and it also creates prejudices against people with Down syndrome and their families. As prenatal testing becomes increasingly widespread, safe, and earlier in the pregnancy, it is crucial that all women be given the most thorough and impartial information possible about why these tests are administered and what the results mean.
11) What are some other books about parenting children with special needs that you’ve found especially moving and meaningful?
I love The Anti-Romantic Child, and I’m not just saying that because this is your site! As a fellow scholar of literature, I loved the way it uses poetry to illuminate the story of Benj’s arrival. I also think it draws attention to a little known but significant form of disability, which is what made it meaningful to so many parents. I also love Michael Berube’s Life as We Know It, which was such an important source of wisdom and comfort when Henry was born.
Other really great ones: George Estreich’s The Shape of the Eye, Kensaburo Oe’s A Healing Family, Ralph James Savarese’s Reasonable People, Ian Brown’s Boy in the Moon, Penny Wolfson’s Moonrise: One Family, Genetic Identity, and Muscular Dystrophy, and Eva Feder Kittay’s Love’s Labor. There are also some really great essays out there that deserve mention. My favorites are Chris Gabbard’s “A Life Beyond Reason” and Marie Myong-Ok Lee’s “What My Son’s Disabilities Taught Me About Having It All.”
12) How can we make our educational system and our colleges/universities more accessible to students with disabilities or developmental disorders?
I am encouraged by the growth of programs that allow students with intellectual disabilities to attend college, and by legislation passed very recently that allows them to take out student loans. These programs can be very expensive. I hope that if they continue to increase and compete with one another, the prices might go down. What most professors don’t realize is that having students with intellectual disabilities on campus is a benefit because they can push us to think about ways to make our teaching more accessible. There are now many campuses that promote the principles of Universal Design for Learning not just for students with intellectual and learning disabilities, but for other kinds of non-traditional students like veterans, the elderly, and immigrants who speak first languages other than English. In the same way that we now install ramps and chirping traffic lights to accommodate people with physical disabilities, colleges and universities are just starting to think about diversifying the ways information is presented, the kinds of work assigned, and expectations about classroom behavior in light of a growing population of students with intellectual and learning disabilities, as well as on the autism spectrum. I would also love to see more attention paid to how to include such students more fully in the social and extra-curricular life of colleges and universities.
QUESTIONS BY JAMES, 11 Years Old
FOR HENRY FROM JAMES:
What do you like about school? I like the snakes.
Who’s your favorite Muppet Friend and why? I love Miss Piggy! She is terrific.
What do you like to eat at lunch? Hamburgers
What do you like to do for fun? I like to play with puppet friends.
FOR RACHEL FROM JAMES:
Was it hard to write your book?
It is always hard to write a book, but this was the easiest book I have ever written. This is because the story I wanted to tell felt so important and I enjoyed doing a more personal kind of writing. I wanted my book to be finished so that I could share it with the world!
Were you sad when Henry was diagnosed with a disability?
Yes I was, and (because we learned about his diagnosis so quickly) I am sad that the day Henry was born was filled with worry instead of celebration. I want to help new parents who come along behind me to celebrate the birth of children with Down syndrome, just like we celebrate the birth of any other child.
What do you like to do with Henry?
I love to read books to Henry. I also like to cook with him (we make gluten free banana bread), and to take him to school on the bus.
What is hard for you or Henry about his going to school?
As you know, Henry just started kindergarten. We love our new school so much that everything seems easy! Our teachers are so creative and welcoming, the other kids love Henry, and we have enjoyed meeting other parents. That said, it is sometimes difficult for Henry to participate in group activities and to stay focused on his work. We feel good that his teachers are working on helping him to face these challenges.
Rachel Adams is professor of English and American studies at Columbia University, where she is also director of the Future of Disability Studies Project. She is the author of Sideshow U.S.A.: Freaks and the American Cultural Imagination. Adams lives with her husband and two sons in New York City.