What to Tell the Children

by Scott Bennett

When I was 18, I informed my doctor I'd be attending college in the fall.

Scott Bennett, 39, at home in Taunton, Mass.

Later, he asked to speak to my parents privately. He told them it was nice that I was going to college but, because I had Duchenne muscular dystrophy (DMD), they shouldn't expect me to survive to graduate.

Well, I finished college. I'm now almost 40 years old and working as a software engineer. Ironically, five years after making that statement, the doctor passed away.

I understand why he said what he did he'd had patients with DMD for decades and had seen the majority of them die by their early 20s. But in my case he was wrong.

Parents often wonder when and how they should talk to their children who have neuromuscular diseases about the realities of their conditions: what's going to happen to them and, more specifically, their life expectancy.

In my experience, you must be very careful about making blanket predictions. Most predictions are based on statistical averages, not on absolute certainties.

In fact, the most accurate prediction you can make is that you should be prepared for anything.

Honest but Positive

I think the most important thing my parents did for me when I was growing up was to treat me the same as my nondisabled brother and sister, with the same expectations, while still helping me deal with my physical limitations.

Parents must be open and honest with their children about the very serious challenges they'll face. Don't approach the subject in a way that's devastating and hopeless, or in a way that minimizes the problem, but in a matter-of-fact style and with assurances that you'll deal with these challenges together when the time comes.

Maintaining a positive attitude is certainly difficult, and parents should be in a calm emotional state before beginning these conversations. But taking a positive attitude will help your child do the same.

You don't need to have one Big Talk about the child's neuromuscular disease. You can handle the subject in bits and pieces over the years, based on what the child asks, and in the language your child understands.

Find ways for you and your child to learn about the disability together, like making it part of a science/biology school project. You'll probably find that by working together, you're helping move both your own and your child's emotional readiness farther along.

Perspective Is Everything

Bennett in 2000, on a cruise with family and friends

My parents never actually had a talk with me about my life expectancy because I beat them to it.

By the time I was 13, I'd learned everything I could about DMD. I felt that in order to cope with this disability, I needed to know what I was dealing with. And I think that's generally true for most kids with severe disabilities: They want to know because then they feel better prepared to overcome obstacles.

I attended a state school for the disabled, which was common in the 1970s, and had a lot of friends with DMD (and other disabilities).

I used to spend a lot of time with one of my best friends with DMD, who passed away when we were both 15, discussing the challenges we faced and potential treatments that might be developed. Those discussions helped me maintain a positive attitude.

Neither of us felt that we were facing a fatal disease, but a disease that meant our life span would probably be shorter than average. I guess it's all in how you look at it.

My father is a technician in the genomics program at Boston Childrens Hospital, which is headed up by Louis Kunkel, the Harvard geneticist who found the gene flaw that leads to Duchenne MD in 1987.

When I was 15, my dad asked me if I was mad at God for giving me DMD, because he was. My response was that I wasn't angry at God or anyone else. Someone had to get this disability, so why not me?

My disease was due to a random genetic mutation and no one was to blame, I explained. I had to learn to adapt my life to my disability. I think that response made my father feel a lot better about my having DMD.

When I was 17, the school psychologist gave me a standard psychological test. Afterwards he told my parents I was having difficulty with my disability because I was reluctant to discuss it without being asked.

My mother very accurately informed the psychologist that he was incorrect. I didn't want to discuss my disability because I was comfortable with it.

I'd learned the facts about DMD and understood the prognosis and its impact on my life. The real problem was that the psychologist was asking me standardized questions without getting to know my family or me. There was no way he could accurately diagnose my ability to cope.

Doctors Approach

Now that I'm an adult, I share these experiences with first-year medical students at a guest lecture I give every year at Harvard Medical School. I try to impress on students that it's important to think not just about the specific illness, but also about the patient and the whole family.

Just as parents must do, doctors must give information in a way that people can handle emotionally. In order to do that, they should become well acquainted with family members.

Parents can help this process by telling doctors how the family is coping. You can also let doctors know that you want your children to have all the facts, but they should be careful with statistics and blanket predictions.

I think that very often doctors, and sometimes parents, get too focused on statistics and numbers (how many years of life?), and not focused enough on quality (how much life in those years?). Ultimately, the purpose of information is to help you, your child and your family make good decisions and better cope with the day-to-day problems that arise.

You may find, as I did, that you'll approach the challenges of disability with a more positive attitude once you have a better idea of what lies ahead. And remember, you never know anything for sure.

Scott R. Bennett is a senior software systems engineer for the Mitre Corporation in Bedford, Mass. He lives in Taunton.