In 1970, when Anne Ford’s daughter, Allegra, was four years old, the family discovered that Allegra had a severe learning disability (LD). At that time, although she had a wealthy, well-connected family, it was difficult to talk about a learning disability, much less get a reliable assessment of Allegra’s LD, or find a supportive learning environment for her. As Ms. Ford sought out countless doctors, schools, and tutors over several years to find help for her daughter, she developed a strong conviction that no parent of a child with LD should have to make that journey alone.
As chairman of the National Center for Learning Disabilities for 11 years (1989-2001), Ms. Ford served as a national advocate for children with LD and their families. When she stepped down from that position, she decided to write the book that eventually became Laughing Allegra, a candid and heartfelt memoir of her experiences parenting a child with LD. The book was co-written with award winning novelist and playwright, John-Richard Thompson, and took three years to complete. Published by Newmarket Press in 2003, the book offers parents both practical advice on raising children with LD and a “guide to the heart” for accepting, supporting, and advocating for their children.
We interviewed Ms. Ford on May 13, 2003, when she and Mr. Thompson were in Los Angeles as part of a national book tour to promote Laughing Allegra. What follows are edited excerpts from that interview.
Q: This is an amazingly candid and poignant book. What motivated you to write it?
Anne Ford: Working at the National Center for Learning Disabilities (NCLD) for 12 years, I answered the phone, I read the mail, and I realized that there were a tremendous number of parents out there who needed, as we call it, a “guide to the heart” — a parent talking to a parent in very understandable language. I wanted them to realize that they were not alone, that there were other parents out there. And to accept the problem once they’d been told that their child had been diagnosed with learning disabilities … I had the time then and I just basically wanted to help other parents have something that I didn’t have when I was going through it 25 years ago.
I really had to get my children to okay it, too, because their lives are so exposed in this book. So once they agreed, we sort of really got to it. And it was long, and it was hard, and it was painful. But Laughing Allegra really is the story of joy and hope and success. Allegra started out with a misdiagnosis of being mentally retarded when she was three-and-a-half-years-old. She was 30 when we finished the book and she’s living successfully, independently, on her own.
Q: You’re just beginning your national book tour to promote Laughing Allegra. What kinds of feedback are you getting from parents?
Anne Ford: Every parent who reads it sees themselves in this book and sees their child. Last night I spoke to a group of parents at a school and each one of them said, “Oh, my God, my child is Allegra.” So I think by opening up as much as I did, I think it has helped parents.
Last night, there was one mother who stood up and said — she actually was crying — “I feel so guilty that I did something that caused this, and I cannot do enough for my child.” And she was having a sibling problem, too. It was a very sad story. But I think a lot of parents feel guilty. I just said, “I think eventually you’ll stop that feeling, but it’s understandable to feel that way.” I never felt I could do enough for Allegra. That’s why I felt guilty, because I thought, “Maybe there will be one more doctor out there. Maybe there’s one other school I didn’t see or one other something that I didn’t do. And I didn’t do it, and that’s why she is the way she is today.”
Q: Accepting that your child has a learning disability can be very difficult, even now.
Anne Ford: Yeah, I spent years in denial and it certainly wasn’t very helpful. I think that parents should — they have to go through some denial — but get over it as soon as possible because it doesn’t do you or your child any good. There have been great strides made in the area [of understanding and accepting learning disabilities], but there’s still a long way to go. I mean, certainly in the area of public awareness it’s been great and in early diagnosis. I know the National Center [NCLD] has developed a screening tool for very young kids, three-year-olds, to pick up any signs that they might have trouble in reading. So, in that area, I think they’ve made great strides.
But in other areas, I think that these kids have a hard time and are continually being called lazy and stupid. And that bothers me a lot. I mean there was an article in the New York Times two or three Sundays ago [April, 2003] in the education section about a mother who’s going through the same thing today that I went through 20 years ago. And that is discouraging.
Q: You started out as a concerned parent and, over the past 15 years, have become a national spokesperson on learning disabilities. Was that a comfortable transition for you?
Anne Ford: No, I mean, I was very uncomfortable in the beginning. In fact, when Carrie Rozelle, who ran NCLD before me when it was still a foundation, asked me to take over as chairman, a couple months after I’d gone on the board, I said to her, “You must be crazy. I can’t even stand up at a birthday party and say, ‘Happy birthday’.” I mean, I was so terrified of public speaking that I said to her, you know, “I’ll take this job on one condition, that I never, ever, ever have to do any public speaking and that I never have to run a board meeting because I’d have to stand up and speak in front of the board and I couldn’t even do that.”
So she said, “Okay, that’s fine. We’ll work around that, and you’ll never have to do any of that.” And then like a week after I took over as Chairman they sent me up to Fordham University to speak in front of 2,000 people and welcome the late Senator [Patrick] Moynihan. So they threw it right at me. But for a couple of years, I was just terrified. And I still do not like to give speeches. I wasn’t at all prepared for the job I took on, but I’d like to think I grew into it. I loved, loved my work. I loved every aspect of it.
And I didn’t mind actually talking about Allegra when I was in front of LD organizations because I knew that they understood what I was talking about. The book is a lot deeper than that. It goes into Allegra’s life and my life much more than I’ve ever talked about in public.
Q: One of those deeper issues for kids with learning disabilities is the whole area of social skills and friendships, which you talk about in your book.
Anne Ford: Yeah, and people don’t realize. To me the social side of a learning disability is much worse than the other because not knowing how to get along in life outside school is a big problem for these kids. And it’s all because they don’t understand the rules of the game a lot of times.
Her friends were all adult friends. Her two [longtime] friends today, one is Ali Halpern; she’s five years older than Allegra. She lived on the street that we lived on in New York. And she has been her best friend and is wonderful with her. She is not learning disabled. The other is Hillary Braverman, who was a skater, too. She is 37 and she is learning disabled. They’re still friends. Hillary’s actually married with a baby now.
Hillary’s mother and I became very good friends, and that sort of helped the friendship between Allegra and Hillary, too. And she knew exactly what I was talking about. I knew what she was talking about. She and Deborah Harris were actually the only friends I had who had a child with a learning disability. But most of the time, [parents of kids who don’t have learning disabilities] don’t know what you’re talking about, and you can’t build your friendship on that.
Q: Sibling issues are another difficult topic you address.
Anne Ford: Yes, one of the things that I talk about in the book is how I really sort of messed up dealing with my son, Alessandro (who is six years older than Allegra). So it’s important to deal with the siblings in a very honest and truthful way right in the very beginning and include your whole family, siblings and the rest of your family… Alessandro struggled with the idea that he thought I was favoring her. And I said to him, “Well, maybe one day you’d like to be your sister and go to all the doctors’ appointments she has” — instead of sitting down and actually telling him what basically was wrong.
But he let me know his feelings about that later. We had a magazine at NCLD called Their World, and he wrote an article in that magazine and he let me have it. It was the first time I really heard him voice an opinion. He didn’t say it to me, he wrote it to me.
Q: As a single parent of two children, one with severe learning disabilities, did you feel that you had to set aside your own goals and dreams?
Anne Ford: No, you know, my life was really my children. I really loved working for the National Center for Learning Disabilities and that’s all due to Allegra that I did that. But what I wanted was just to be with my children as much as I could. And being a single parent actually didn’t bother me at all. I learned that when I did have a husband I had to deal with it on my own anyway, so it was much easier to actually end up making the decisions by myself.
Q: As her mother, what have you provided Allegra that has made her a stronger person?
Anne Ford: I think the fact was that I was there all the time. [While the children lived at home] we had dinner together almost every night of the week. [Currently] I call Allegra every day. We’re best friends. I think it’s just that the family as a whole working together gives them strength so that they will do the same — I mean Alessandro will be the same way as a father to his daughter, Eleanor, because I think he’s grown up that way. Even though his father wasn’t around, his mother was. And I think it does carry on. I think I am somewhat the way I am today because I had a very strong mother and father who believed in family. They made a lot of mistakes. I made a lot of mistakes. But all the good stuff carries on, I think.
Q: Have there been times during the writing of the book or the tour that you’ve had second thoughts about making intimate parts of your family’s lives so public?
Anne Ford: It’s ongoing. And I had Allegra, you know, be part of the book. At the beginning of every chapter in the book, there’s an email to me from Allegra. And she’s read it. Alessandro’s read it. She’s read as much as she can read of it. And sometimes, you know, it bothers her. Like yesterday she went to the Border’s bookshop in Cambridge and she said, “Mom there was a huge poster there with my picture on it.” She said, “I was so embarrassed.” And I said, “Oh, Allegra, they would never know that was you. Look at the picture. You don’t look like that anymore at all. So don’t be embarrassed, be proud.”
But I have to read you the inscription she wrote in my book. She wrote:
Dear Mom, This book will be inspiring to a lot of people out there. You are a great Mom and again thank you for helping me get through a lot in my life. I love you.