Designer Dana Buchman on Raising a Daughter with LD (transcript)

NCLD: What prompted you to share your story by writing A Special Education: One Family's Journey Through the Maze of Learning Disabilities?

Dana Buchman: I travel around the country a great deal in my work as a designer and I realized, in speaking with many of the women whom I've met in my travels, that a lot of families have children with learning differences. And I felt I had something to say, so it really started from that. Charlotte was beginning her senior year in high school, and I felt I was at the end of my journey, so I did it partly for myself -- because I wanted to look at what she and I had come through -- and part of it was a sincere desire to help other families who were just beginning that journey, to alert them to the things that might come their way.

NCLD: When the other members of your family heard you were going to write a book, how did they react?

DB: [Laughter] Of course I told Charlotte first, and she said, “Great!” and was all for it because she knew we had a story to tell. My husband Tom was skeptical, though; I think he felt it was private family business and couldn't understand why I'd want to tell people. But what's been most gratifying, now that the book is coming out, is that he's seen how it's brought Charlotte and me closer, and has brought him and me closer. It's really been good for the whole family. He gave me a big hug and said, “You were right!”

NCLD: Did you allow your family to read drafts of the book as you were writing it?

DB: As a designer I know when you're working on a project like this, you don't need a crew of editors along the way. Charlotte read pieces of it as I was going along; I kept her updated. [Her younger sister} Annie is a 17-year-old with a busy life of her own, so she just kind of said, “Whatever.” I let Tom read the draft after it was finished but before I sent it off. It was hard for him. It wasn't his book, and it's different if you're not the person doing the revealing. But he's a loving husband of 21 years and he told me that it was okay if it was something I wanted to do. He was very supportive all along the way.

One of the things he told me after he'd read the manuscript was that I was too hard on myself. It was important to be honest, though, and I tried to be as forthcoming as I could with what I feel were the things I didn't do as a mother and the places where I feel like I failed or could have done a lot better. What I worry about the most is that, in the parts where I'm the most self-critical, it doesn't cloud the fact that I absolutely adored Charlotte all along the way. So when I talk about all the tough feelings -- the anxiety, the worry, the shame and then the shame at being ashamed -- I hope it comes through that underlying all of that was tremendous love.

NCLD: There's a part in the book where you describe watching Charlotte dancing along with other children in a nursery school performance, and seeing that her movements were almost exactly the opposite of the other children. Was that the big revelatory moment for you regarding Charlotte's learning differences?

DB: The real revelatory moments for me came earlier, actually. All the parenting magazines said, “A child should be doing X at a certain age, and Y at another age,” but Charlotte was getting to be around a year old, and she hadn't begun crawling. Everything we'd read about child development said kids should be crawling at around eight months. And when Charlotte would have play dates with other children, we'd see how far along they were in their development and that Charlotte was lagging behind. She wasn't crawling, then she wasn't walking at age one when the other kids were, and her speech wasn't quite as clear as [that of] the other children.

As a new parent, I had nothing to compare [her development] with and our friends would just say, “She's just developing at her own pace,” which children will do. But as each milestone came along, and we could compare her to her playmates, that’s when we started to think that something was wrong.

So when she was five years old, we had her tested. That diagnosis, I'd say, was the turning point. Her dentist recommended a speech therapist, because her speech wasn't clear, and the speech therapist recommended that we have her tested for LD. We took her up to Columbia Presbyterian Hospital, and she was given a whole battery of tests covering a number of different things, including learning disabilities (LD).

Finally, the doctor brought us into her office and told us that Charlotte had learning disabilities. But this was really only the beginning and it was very frustrating for us. On the one hand, we finally had a concrete, black-and-white diagnosis from a doctor at a major medical institution. But on the other hand, there was a lot of frustration because when I asked [the doctor], ”Well, what does that mean?” and “What are we going to do?” it all became much more vague. The next steps were not at all clear.

One thing the doctor did tell us was that she might need a special school. When I heard that, I just fell apart. I had gone to a big sprawling public high school in Memphis, Tenn., and hearing “special school” sounded like my daughter was being sentenced to Siberia. Of course, it would later turn out to be the best thing that could have happened to her.

NCLD: What happened next after the diagnosis?

DB: Well, I picked myself up and put my fix-it hat on and felt better because now I had a mission. The way my personality works if there's a problem, I go out and fix it. We were told she might need speech therapy and occupational therapy, along with a special school, so I started investigating the options. We were lucky, because there are terrific resources in New York City [where we lived]. We talked with a family friend who's a child psychologist, and she listed special schools in New York and helped us get the process started.

NCLD: Did you and your husband talk a lot about what was going on?

DB: We talked about it operationally. In fact, that became the default topic of conversation, How's Charlotte doing?” or ”How is school going for her?” We didn't talk very much about our emotional reactions to it. We talked about what we should do, what the next step would be. We were both very into that; we were very good at that.

NCLD: Did you explain all this to Charlotte as you were going along? Did she start to realize early on that she was different from other children?

DB: Kids are very smart; they know so much more than parents think they do. Charlotte knew what was going on very early. So when we finally did sit her down and said “Charlotte, you have a learning disability,” it really wasn't a big surprise for her. I'm not sure exactly how early it was when it came into her mind, but with all the hoopla from an early age -- going up to Columbia Presbyterian and getting all the tests, for example -- she was quick to realize something about her was different.

We didn't talk about it with her then, though, because at the time nobody said we should tell her. I felt that, until we knew more about what the nature of the problems were, we shouldn't include her. We would tell her things like, “We're going to see if you need extra help in school,” but we didn't really try to explain things to her until she was maybe ten or so. And, by that point, I think she already knew.

NCLD: When was your second daughter, Annie Rose, born?

DB: Annie came along when Charlotte was two years old.

NCLD: Did you ever feel guilty about comparing her development to Charlotte's?

DB: My gosh, yes; it was horrible. On the one hand, I wanted to compare them because I didn't have much to go on as far as gauging Charlotte's progress. On the other hand, I didn't want to compare them because I didn't want Charlotte to feel bad. The defining moment came when Annie was about five years old and was reading Frog and Toad, (a chapter book), while Charlotte still couldn't read at all. And at a glance, you could see the hurt in Charlotte's face, realizing that her younger sister could do something that she couldn't.

I ended up over-protecting Charlotte, spending a lot of time protecting her feelings. And in trying not to make Charlotte feel bad, I short-changed Annie. That's one of the most important messages I want to emerge from the book. If you think a child may have learning differences, get him or her tested as soon as you can and start dealing with it. The earlier the better. But also be aware of the effects that LD will have on your whole family, especially on siblings.

A child with special needs is just that -- extra needy. The operational things alone, like taking Charlotte to the therapist, naturally required special attention. But there were also dozens of other, everyday things, too -- helping her tie her shoes or just getting dressed -- where she always needed a lot more attention [than Annie did]. Sometimes when we were going out, Annie would be dressed and ready, but Charlotte wouldn't be able to find anything in her room, and might need help getting her clothes on. There were many things related to her disability that needed attending. The whole time you're handling these things for your LD child, it's important not to neglect your non-LD children.

Charlotte and Annie were always very close, though, and they still are. Annie never lorded it over her sister, either. The dynamic between the two of them was also very interesting. When they were out together, Annie was always protective of Charlotte, was watching out for her. But when they played together at home and played imaginary games that involved roles, Charlotte would always be the mommy and Annie would be the little girl. When they played by themselves, they would restore the natural order of the "big sister looking after the little sister" dynamic.

NCLD: Did you sit down with Annie and talk about Charlotte's LD?

DB: Eventually, yes. But I think I was much too late sitting down and talking to her about the situation. Ultimately, I think she kept a lot of her feelings bottled up. I realize that we should have talked about it with her sooner.

As far as telling others, my attitude was, “Don't tell people that Charlotte has learning differences, because that will become the thing that defines her,” as if talking about it would make it come true. It wasn't that I was embarrassed for people to know, but I thought it was a good idea not to talk about it because Charlotte's LD wasn't always apparent [to others].

Since LD isn't apparent in every situation, one of the big problems is [deciding] when to mention it. When Charlotte is in a situation where she's around a lot of mainstream kids, when does she bring it up? I don't think she should rush in and say, “Hey, I have LD.” Or when I'm introducing both my daughters, I don't say “This is Charlotte, she has LD.” It's something that people with LD always have to grapple with.

NCLD: Dr. Betty Osman, an expert on LD and a member of NCLD's advisory board, has said that LD is a family affair and the impact can often be almost as difficult for the sibling without learning disabilities as for the sibling with LD. What are your thoughts?

DB: My gosh, the impact on a family is HUGE! And I wish somebody had told me that. I thought, “Hey, my daughter Charlotte has LD -- I can take care of that.” I thought with enough hard work, I could fix it. The dynamic within the family, however, is vastly more complicated than that.

It's crucial for a parent to understand that they have to pay attention to the other child and give them their due. They also need your admiration, your time and devotion. For example, when Charlotte brought home an A on her report card, Tom and I would make a big deal out of it, say how great it was, trying to build up her self-esteem. Then Annie would bring home an A on her report card, and we would be like, “Oh, that's nice, you got one too.” We were afraid to play up Annie's gifts because Charlotte didn't have similar gifts and we didn't want her to feel bad. And that, of course, was a huge disservice to Annie. They're two different people, they have different sets of gifts and you can't praise one and ignore the other, regardless of the reasons you may have for doing it.

Luckily, we learned this early on. [When the girls] were maybe four and six years old, I’d play with them on Saturday mornings and we would all draw and color together. I always had to help Charlotte, because she had trouble drawing and coloring and using scissors. I wasn't ignoring Annie, but I always paid more attention to Charlotte because she was the one who needed help. This went on for several weeks, until I finally realized that something was wrong between Annie and me. She wouldn't mind [me], and she was screaming hysterically a lot of the time. We finally took her to a therapist. (I'd become a big fan of therapists by then.) The therapist had Annie draw a picture, and she drew a picture of a little girl standing next to a tree where all the leaves had turned brown and fallen off.

Within three or four visits, we figured out that Annie felt like a fifth wheel, like she didn't belong and wasn't getting the attention she needed. And I didn't know. I thought I was helping the child who needed me the most, but this was a huge revelation for me. You have to be aware of all the siblings and give each child their due, but of course that can be very hard. For example, school was always very hard for Charlotte, and it wasn't for Annie.

There was one incident I talk about in the book, where Annie and I were sitting at the table and she was telling me about her calculus class. Then, when Charlotte got to the table, I changed the subject because I didn't want her to feel bad that she was not taking, and would never take, calculus.

NCLD: What were some of the biggest hurdles for Charlotte in terms of her education?

DB: Learning to read was a nightmare. When Charlotte was eight years old, Tom took a leave of absence from his job and the two of them went out to California over two summers to study at the Lindamood-Bell Center. Charlotte studied four hours a day, and the therapy worked for her and she came back finally knowing how to read.

NCLD: There are many milestones in an adolescent's life that can only be described as "scary as hell for Mom and Dad." Regarding Charlotte, what were some of the biggest milestones for you and Tom?

DB: We were very close [to Charlotte during her] adolescence. Charlotte isn't conservative, but she is cautious, so it's not like she was out there engaging in risky behavior. One of the big hurdles, though, was learning to ride the subway. In New York, this is a big rite of passage for a teenage kid. And as the parent of an LD child, you never really know for sure what your child is ready for. You have to use your best judgment.

But I was urging Charlotte to learn to ride the subway, and she didn't want to do it, she was telling me how overwhelming it all was -- she was overwhelmed by the directions, which stairs go up, which ones go down, what happens if you get off at the wrong stop. And I understand, it's scary; it's even scary for non-LD people who have never been in the New York City transit system before.

Then one day, there was a boy. And she wanted to go somewhere to meet him, somewhere I couldn't take her. So she walked out and got on the subway and never looked back.

The most difficult problem through all this was balancing what we thought Charlotte was capable of doing, even though she might be frightened of doing it, and which situations were the ones where she really needed our support. It was a question of where to push her and where to prop her up. And not knowing the difference between those two was the hardest thing about those years.

NCLD: Your book gives the impression that Charlotte's learning disabilities ultimately brought your family closer together, though at times it seems there were serious strains. What were some of the biggest areas of stress in terms of family dynamics between the four of you?

DB: It was sort of a pervasive strain, an undertone that was always there. We're a very close-knit family, though, and we're very much homebodies. I think that was one of the main things that helped us get through it. When I'm not traveling, we have family dinner four nights a week. But there was a sort of unspoken strain between Tom and me, and I think we missed a lot of opportunities to get closer. We didn't talk about the feelings we had around the stresses of raising children. I never talked about how overwhelmed I felt juggling a job and two daughters. I would just sit up straight and say, “I'm fine.”

Down deep, I felt that if I did start talking about my feelings, I'd open up the floodgates to a lot of vulnerability, and I'm not good at admitting weakness or vulnerability. It was a false world view, of course. I've since learned that when you open up, there it is and so what? You don't feel so alone and you don't feel so overwhelmed.

Writing the book has also helped that process tremendously. It's really been a catalyst. Tom and I can look at each other now, as I've started to admit things to myself, and tell Tom about the things I've felt and he'll say to me, “Oh, I've felt that too,” and then the walls of silence just tumble down. We look back now and we're surprised at how little we really let our feelings out over all those years, how little we'd actually talked about feeling anxious or afraid or vulnerable.

It's also been surprising for me to realize that so much of my personal growth as an adult has come from Charlotte. The turning point came when I was 47 -- I had a panic attack, my first and only. I couldn't breathe, I felt like I was going to have a heart attack and it was all from the strain of holding up this false world of perfection I had made. That's when I started seeing a therapist myself and trying to look at things as they actually were – looking at things realistically and honestly, rather than through that “She has it all” screen. That panic attack was the tap on the shoulder that told me something was very wrong.

I got help and examined everything. I became a different person. At work, for example, I used to be driven; nothing escaped my scrutiny. Attention to detail might be one way to describe it; total control freak is another way. I got by on four or five hours of sleep a night, would work like crazy all day, then rush home to take care of the girls, get up in the middle of the night and maybe work a couple of hours more. I looked at all that and realized I had to learn how to delegate, how to back off and let people do their jobs. That was HUGE for me. But I finally had to realize that the “old me” was making people nuts.

What I've finally learned through this journey is acceptance. I've always loved Charlotte in spite of her learning differences, but now I've learned to love her along with her learning differences. I regret that it took so long to get here, but that was the journey. And in learning to accept her and her differences, I've learned to accept my own. I was afraid that if anyone saw that I wasn't perfect they'd think I was a horrible person. Or in the case of my husband, that he'd leave. Or in the case of my business, that I'd go bankrupt.

Charlotte taught me that I don't have to live with that, with a perfectionist mentality. She couldn't hide her vulnerabilities, so she learned to be comfortable with them. She learned to ride the flows of frustration and disappointment, and she taught me that I can accept my own failures and vulnerabilities, too. She taught me that she doesn't have to be an A student all the time and neither do I.

NCLD: If you could say anything to the parent of a child who has just been identified as having LD, what would you say?

DB: First of all, it's not the end of the world. Get help and recognize that it will also have an impact on you, your spouse, other siblings and the entire family dynamic. And make sure you enjoy everything your LD child has to offer -- be conscious of all of that child's non-LD aspects. Be aware that you're going to make mistakes, that all you can do is the best you can at the time. [My book] is all about that and the thousands of things that I'd probably do differently.

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