Helping Kids Understand: The Big Listen

Helping children understand their diagnoses

Trust, emotional support and love all are part of a diagnosis conversation. Above, Noah Spencer, 8, who has spinal muscular atrophy, connects with a fuzzy friend in a wheelchair. Photos of Noah by Tim Fuller.
by Christina Medvescek on July 1, 2006 - 2:23pm

QUEST Vol. 13, No. 4

Joanne Wechsler remembers when she first formally told her preschool-age son Adam that he “had muscular dystrophy.”

“I don’t have that!” he protested loudly. “I don’t have muscular dystrophy!”

Adam had been going to doctors since he was 2 and his parents learned he had Duchenne muscular dystrophy (DMD) when he was 3. So far Adam was satisfied with minimal explanations for the doctor’s visits and uncomfortable procedures. When he was about 5, his parents decided to talk to him about his diagnosis more formally.

Wechsler and her husband, David, of Jericho, Vt., realized pretty quickly that Adam “hated the idea that he had something,” she says. “We needed to change our language and not say, ‘You have something,’ but say, ‘there’s a problem with your muscles. Your body doesn’t make the glue that holds the muscles together.’”

Opportunities to discuss the disease come up naturally during active family life, says Joanne Wechsler, shown with husband David and sons Adam (left), now 10, and Jacob.

An ongoing process

Telling children about their neuromuscular diseases is a necessary, delicate conversation. Parents rarely feel confident going in. How much information? Is this the right time? How do I explain this simply? Will this cause worry and fear?

There isn’t a single “Big Talk” about the diagnosis, when all information is transmitted and everyone goes forth enlightened. Rather, ideally, a conversation develops in little bursts over time, as the child matures, life happens and questions come up. Rather than a Big Talk, experts say this conversation is a Big Listen.

“I would suggest you never ‘tell’ a child they have a muscle disease. You just set the stage,” says Charlotte Thompson, a pediatrician with 50 years experience caring for children with muscle diseases, and author of Raising a Child with a Neuromuscular Disorder (Oxford University Press, 1999).

Setting the stage means to go someplace quiet, like for a walk or an ice cream. Turn off the cell phone. Create openings for conversation, such as, “You’re probably wondering about all the medical tests you’ve taken recently.” Then be quiet, listen and answer questions as they come up.

If you try to “tell” kids rather than following their lead, you may use the wrong language, say something inappropriate for the child’s age or answer the wrong question, Thompson says. “You want to come from the kid’s perspective. Kids are very smart. They may not be worried at all. They may already know. He or she may have overheard something or talked to other kids at clinic or picked up a brochure.”

These occasional, usually brief conversations are part of building a child’s resiliency — their capacity to face, overcome and even be strengthened by adversity. The elements that build resiliency — trust, emotional support, self-esteem, hope, achievement, unconditional love — all come up in these conversations.

How to build resiliency

Brief, occasional talks about the disease as issues arise can help children become stronger in the face of adversity.

Parents and professionals suggest these guidelines:

Be honest, but don’t talk too much.

“Provide the information the child is asking for, in a way that says, ‘this is just how it is,’” advises Joanne Wechsler, who’s also a family support coordinator for Vermont Parent to Parent, an organization for parents of chil-dren with disabilities. Children “just want knowledge: ‘Tell me why this is happening. Oh, that’s why. OK, bye.’”

Be upbeat. Focus on hope. Provide reassurance.

Two years ago, Sheri Dede’s daughter, Kaitlyn, 9, received a diagnosis of desmin storage myopathy, a rare condition that causes muscle and organ damage.

“I sat her down and told her they have a name for this,” recalls Dede, of Billings, Mont. “I said, right now there’s not a cure for it, but there are things we can do to make things better for you. We have all these doctors that are going to help, and we’re going to get you what you need.”

It’s OK to be a little sad.

Kaitlyn Dede Adam Wechsler

It’s best to be matter-of-fact and neutral in tone, but sometimes emotions just well up. Although some experts say parents should never cry in front of their children, others say that, within limits, it’s OK. When emotions come up, parents can admit they’re sad, and also let children know that sadness won’t break them.

“Sometimes it makes it easier for (children) to feel their own emotions,” Dede says. But don’t go too far — the conversation isn’t about the adult. Children shouldn’t be afraid to talk about their diagnoses for fear of upsetting their parents.

Acknowledge their emotions without trying to “fix” them.

Anger, grief, fear and other negative emotions are reasonable responses to a muscle disease, Thompson says. Rather than trying to make the feelings go away, parents can lovingly accept and show that they understand.

Don’t predict the future.

If children don’t ask about the future, don’t bring it up. If they do ask, answer honestly but keep the door open to possibility.

Rhonda Hillman of Fenton, Mich., recalls that when her daughter, Gabrielle Ford, asked if it was true that serious heart problems could develop in Friedreich’s ataxia, “I just told her, well, the heart is a muscle. But if you’re asking me to put a time line on you, I refuse to do that. Every case is different.”

When increasing hand weakness led Dede’s daughter to ask if her condition would get worse, Dede responded, “Yes, but we don’t know for sure what’s going to happen. We’ll make sure we do what we can when things happen.” Dede then contacted the school about accommodating Kaitlyn’s hand weakness, offering a concrete response to the situation.

The quiet child

Some children — especially teens — may refuse to be drawn into discussions about their diseases and may even seem to be in denial. This may be their personal style or a symptom of their age and no cause for concern — or it could be a mask for emotional difficulties. Thompson advises parents to watch for signs of depression.

If children are more withdrawn than normal, or have changes in eating, sleeping, friends or school, parents should consult a family therapist, social worker or school counselor, who may even pay a house call. Counseling also can be valuable for the parents alone, if the child refuses to participate.

A lack of questions about the disease may simply mean the child is not focusing on it.

Parents should let quiet kids know they’re available to talk if the child wants, and create opportunities for conversation to happen. Just knowing the door is open is enough for some children.

Nancy Nereo, a clinical psychologist at the Hospital for Special Surgery in New York, says a lack of questions about the disease may simply mean the child isn’t focusing on it.

In 2003 she published a study in which boys with Duchenne MD ages 6-12 were asked what three wishes they would make if they could wish for anything at all (see "Boys With DMD wish for Fun Stuff, Pets," November-December 2003).

Surprisingly, the boys with DMD were no more likely to make health-related wishes than were boys in the control group. In fact, the siblings of the boys with DMD were more likely to make health wishes, especially for the health of their brothers.

Adam Wechsler, now 10, still doesn’t want to talk about his DMD. “He’s a typical guy. He doesn’t talk a lot and he doesn’t want to talk about his emotions,” his mother says.

Adam has never asked what his mom calls “the really hard questions” — Will I need a wheelchair? Am I going to die? (see “The Hard Questions”). Although he’s sometimes frustrated by his declining abilities, “he’s generally a happy kid and doesn’t see himself as different,” Joanne says.

The Wechslers haven’t shielded Adam from his DMD. He recently was appointed MDA Goodwill Ambassador for Vermont, a position that requires talking about his diagnosis. Making friends at MDA summer camp is another way he’s exposed to information about his disease and the future, says Joanne, who hopes experiences like these will help him become a good self-advocate.

Talking with siblings — and others

A neuromuscular diagnosis affects the entire family. All the tips for talking with affected children about the diagnosis hold true for their brothers and sisters.

In addition to love and concern, siblings may feel guilt, jealousy, anger or embarrassment about having a sibling with a disability. These aren’t comfortable feelings for parents to hear about, but kids need to know they can talk about them, Nereo says. Some siblings also benefit from talking with a counselor.

Outside the immediate family, many parents talk about the diagnosis with the affected child’s classmates at school. Sharing information about the disease and its effects cuts down on bullying and facilitates friendships.

Just like everyone else in the family, parents need someone supportive to talk to about the diagnosis. Extended family may or may not fulfill this need.

If family members don’t seem to get it, and talking with them is more draining than supportive, just drop it, advises Joanne Wechsler, who offers information only when her relatives ask her. “True support comes from other parents of children with the same diagnosis, who understand.”

Seize the moment

This spring, Adam Wechsler wanted to go out for Little League but his parents weren’t convinced it was a good idea. In the course of negotiating a solution, they discussed his muscle disease.

The conversation was realistic about his abilities, creative in looking for solutions and supportive of his interests in other areas. These little opportunities come up regularly and naturally during family activities, Joanne says.

“He’s OK now with saying, ‘I have Duchenne muscular dystrophy,’ whereas at age 5 he couldn’t say it.

"He knows that’s just part of who he is.”

Also see "Helping Kids Understand: I Don't Wanna."

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