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Interview: May 9, 2003

May 9, 2003

In this interview with Co-Founder Carol Fitzgerald, Anne Ford, co-author of LAUGHING ALLEGRA, discusses her motivation for writing this candid and moving memoir about raising a daughter with learning disabilities and shares her wisdom with those facing the same challenges.

BRC: Why did you decide to write this book now?

AF: After Allegra went away to school I was asked to join the Board of Directors of the National Center for Learning Disabilities (NCLD). I hoped the knowledge I had gained through my experience with Allegra might be of use to other parents in a similar situation, and I used to go down to the NCLD office and help answer the phone calls and letters from parents looking for help. In that first year I was asked to become Chairman of NCLD and served in that capacity for twelve years. During those years, great strides were made in the area of public awareness, but even so --- NCLD still received the same type of letters and phone calls with the same types of questions. I realized that yes, there is a great deal more hard information out there about learning disabilities, but many parents still needed a "guide to the heart" --- they needed reassurance from someone who has already been through what they are going through. That is why I wrote LAUGHING ALLEGRA --- it is my attempt to be the friend across the table who says, "yes, I understand, and yes, your child will be fine."

BRC: Back in 1974 there was much less known about learning disabilities. Parents like yourself and children like Allegra were the pioneers for many of the changes we are seeing now in the education system, which includes adaptations for different levels of education. Do you ever look back with pride when you see the offerings now being made to children based on the lessons learned from children like Allegra and mothers like you?

AF: To be honest, it's never really occurred to me to look back in that way, at least not on the field of LD as a whole. Maybe we were so busy at NCLD looking for the new challenges and needs that we never really stepped back to see how far we had come. I certainly look back with pride on Allegra's journey from a lonely child into an independent adult.

BRC: Was it painful to write this book, or did knowing how far you have come make it easier to share your experience?

AF: It was very painful. A friend of mine read the book and said he came away with an impression of a mother who remembered every single detail of a painful experience. He was so right. Sometimes it feels like the wounds have never fully healed. Even now, when I hear another parent talk about going through the exact same experiences I had, I still find that I can get as angry or (more usually) as close to tears as I was back when I was going through it. I don't know if we ever fully get over the pain of watching a child trying to find their way through a world that too often doesn't understand

BRC: Raising a child with a disability often has many highs and lows. With time, were you able to face the lows more easily after what you learned?

AF: Oh yes. We can get used to anything. After a while the lows were not really lows --- just minor disturbances in an otherwise happy life. My son Alessandro was always so terrific with his sister and the three of us --- Alessandro, Allegra and myself --- made the highs as high as we could, and mostly tried to laugh at the lows. I have written about some of the difficulties a learning disability can cause a family, but there is always an up side to everything. I think our challenges brought us closer together.

BRC: What is the ONE thing you would love parents facing the same challenges as yours to know?

AF: The one thing I always say first is "Don't panic --- your child will be fine." And I really believe that. Yes, there is some adjusting to do, especially with the parent's way of thinking about their child and the future. I went through an unbelievable amount of denial, but eventually reality forced its way in and I was able to forget my concerns over what my child could not do and focus on all the wonderful things she could do. Learning disabilities cannot be cured, but they can be treated successfully and children with LD can go on to live happy, successful lives.

BRC: While it is difficult to accept that your child is not like others, do you feel it is more painful to watch children who are in need of help while their parents cannot accept there is something awry?

AF: I do, but part of my pain is in realizing that I did the exact same thing and made some of the same mistakes. As I mentioned before, I put up a huge wall of denial. It was years before I was able to break through it. I've written a lot about this in LAUGHING ALLEGRA. Accepting that your child has a disability, especially one like LD that cannot be seen or easily diagnosed, is one of the hardest things to come to terms with. I have met so many people who tell me they plan to give the book to someone who needs it, and that usually means a parent who has not come to terms with their situation. One of my deepest hopes is that my story will help some of these parents toward acceptance.

BRC: You came from a background of both status and wealth. While people can say that money can ease any situation, did you find that this was not all that was required to find what you needed for Allegra? Also, given your social background, was this challenge filled with additional stress for you? You mention at one point giving up your home in Southhampton, which was a source of great happiness to you, as Allegra was having trouble finding a social life there. What else did you have to give up to be Allegra's mom?

AF: There is no question that the resources available to me were helpful on certain levels, but the reality is that LD creates a completely level playing field in some of the most basic areas. For instance, I had the means to seek out of the top experts in the field at that time. It was the first real diagnosis I received. This is what it was: "Your daughter is borderline retarded and I think it best for you and for your family to have her institutionalized. And I can't help you with this because I'm too busy." Allegra was five years old. Needless to say, I did not follow his recommendation, but it does point up the reality that resources sometimes have no bearing at all on the situation. Being Allegra's Mom never entailed giving up anything that was truly painful. By this I mean that I may have had some feelings of regret, but when weighed in the balance, Allegra's well-being and happiness always won out. I think any parent would feel this way.

BRC: From your writing, readers see how much Allegra has brought to others who have been important to her. She still keeps in touch with people she knew from pre-school and has become a special part of so many people's lives. What is the biggest gift that Allegra gave to you?

AF: I would have to say that both of my children have given me my entire life --- I cannot possibly imagine what my life would be like today without them and their influence. I suppose Allegra has given me a sense of purpose I might not otherwise have had. I have devoted my life to the issue of learning disabilities. That certainly would not be true if it was not for my daughter.

BRC: Revising your own expectations to a realistic level is one thing that a parent of learning disabled child needs to do, often daily. However, if there is another "normal" child in the family, the vacillation between the expectations for each can lead to mixed messages and challenges of their own. How did you deal with this raising Allegra and her brother, Alessandro, who does not have learning issues?

AF: I'm glad you asked me that. You asked me earlier what ONE thing I would love to tell parents. I said "Don't panic --- your child will be fine." The SECOND thing I would say is "Involve all your children in the situation." I feel so strongly about this because I did not do it. I think I was struggling so hard to understand and accept Allegra's difficulties that it never really occurred to me to try to explain them to her older brother Alessandro. As a result, he only saw Allegra getting all the attention and saw it as a double standard. In spite of a parent's best intentions, there is no way to avoid focusing on the child with LD. The best way to minimize resentments amongst siblings is to keep them involved. Let them know what the diagnosis is, and what their brother or sister is going through, and give them a sense of responsibility and purpose by explaining how much they are needed to help the family get through this. They'll thank you for it later.

BRC: While there is a focus on trying to create education plans for children like Allegra, I have often thought that EVERY child needs an IEP (individual education plan), which would highlight their talents and empower them to react to their shortcomings, however slight. Do you agree?

AF: My instinct tells me that yes, it would be wonderful thing, but I am not an education or medical expert, so I don't feel I'm equipped to talk about what such a plan would entail.

BRC: You write with an honesty and candor that is refreshing. Were you always this candid about your life, or did Allegra bring out this side of you?

AF: The honesty and candor was not easy. It goes back to my saying that the book was painful to write. It is so hard to admit our own flaws and mistakes, but I knew early on that the only way this book would be effective was to be as open and upfront as possible. My feeling then and now was that I wanted LAUGHING ALLEGRA to be the book I needed (even if I didn't know it!) when I was going through all the difficulties of those early years.

BRC: At what point did you decide to become an advocate not only for Allegra, but for all children with learning disabilities?

AF: I'm not sure it was a conscious decision. As I mentioned, I went from raising Allegra into being Chairman of the National Center for Learning Disabilities, and from there into writing this book. I suppose I have never really changed my actions, but just expanded them to include others --- from Allegra, to those helped by NCLD, and now hopefully, to an even greater number who will read LAUGHING ALLEGRA. In a way, I suppose I never stopped being a Mom.