YOUR KID HAS A PARENT WITH MS.

I dialed the airline as my 10-year-old son Devin was preparing his school lunch.

"Last week I made reservations for 3 and I would like to alter the arrangements I made for an airport wheelchair for my husband. We'll be needing 2 wheelchairs."

I had to make this change because a few days earlier an MS exacerbation left me unable to walk more than a few feet at a time. I had never used an assistive device, but my husband does. Jeff is a polio survivor who walks with a crutch and has the fatigue and diminished function of post-polio syndrome.

I hung up the phone. Devin looked over from slipping his lunch into his backpack. I avoided his eyes. I felt terrible when I envisioned our family at the airport, with both parents in wheelchairs and our little boy burdened with luggage.

Suddenly I was ashamed of myself. As a child I was infuriated when adults had "grown-up" conversations, as though I weren't present. I was repeating the same behavior. I felt fortunate that I'd caught myself. I explained to Devin what was going on--that I was having an exacerbation. I assured him that it would pass. As I took a logical look at what I had been doing, I realized that the suitcase was a light load for Devin compared to the emotional baggage I had almost heaped on him by not communicating directly and honestly.

Sharing the good stuff--and the bad stuff

Open communication between parents and children means finding ways to talk about negative or worrisome issues, as well as the positive things. Many parents have discovered that the best policy is to discuss the MS problems in an appropriate way, on the spot.

"Children can sense when something is wrong even when nothing is said, and they often imagine it to be far worse than the reality," said Yvette Russell, PhD. Dr. Russell is a first-grade teacher, a rehabilitation counselor, and the single mother of Travis, age 3, and Becky, age 6. She is also the Society's 1998 MS Mother of the Year. She recently facilitated a self-help group for teenagers at the National MS Society's Wisconsin Chapter. "The kids were angry when their parents spoke about MS in hushed tones as though they couldn't understand," Dr. Russell said. "The parents thought they were sparing their kids, but they were scaring them."

Dr. Russell finds that when parents don't exclude their children from their concerns, and are able to talk about MS using age-appropriate explanations, children are invariably more cooperative. They feel they have permission to ask questions and to grieve their parents' losses.

I've found talking about MS with Devin works best on a "seize the moment" basis. Something may come up in the car, at bedtime, while taking time out from a game, anytime. Don't let it pass. Give some basic information about MS, keeping it brief. When children ask questions, be sure not to overload them with more information than they've requested.

When families don't talk

When Shari Gerhart was growing up, no one in her family ever mentioned her father's chronic illness. It was never discussed and she formed the impression that it was somehow her fault. Shari's childhood memories are clouded by guilt, sadness, and suicidal feelings. Both Shari and her husband John have MS and are raising their 10-year-old daughter Kathryn. The Gerharts encourage family communication, even though they can't always offer the positive responses they wish they could.

"I don't want to pass down my family's attitudes to Kathryn," said Ms. Gerhart. "So when Kathryn says that she wishes I could still jump rope, I tell her I feel sad too that I can't be as active as I was."

Allowing kids their feelings

It's natural for parents to want to protect their children, and to feel powerless when they can't make things better. But efforts to fix a child's distress by saying something like, "Don't worry about it. It's not so bad," can be perceived by the child as a dismissal of valid feelings. The fact is the child is worrying and feels that what's happening is very bad. Better to say something like, "I see that you're worried about my going into the hospital. It seems pretty scary, doesn't it?" This is what the child wanted in the first place--an opportunity to talk about worries.

Acknowledging a child's emotions will ultimately be beneficial to the child's sense of self and well-being, but along the way, it can be hard for parents to come face to face with what their kids are going through.

"When children's lives change because of MS, their emotions may surface in troubling ways," said family therapist Wendy Sullivan, assistant director of programs at the Upstate New York Chapter. "Teenagers can resent MS for stopping them from being just like their friends. Younger children sometimes harbor fears that MS is contagious or fatal. And children of all ages can feel embarrassed about a parent's cane or walker. When children `act out' these feelings, parents may feel their kids are selfish or uncaring."

This can start a cycle of anger, blame, and defensiveness. Rather than reacting to each situation as it arises, it might help to look beneath the surface at the feelings involved. For example, a child's hurtful comments about a parent's "gimpy" walk might be masking some real fears: "I'm scared. Today you're walking differently. Tomorrow you could be in a wheelchair." By stepping back and not giving in to the hurt and anger, a parent can help the child articulate and come to terms with these deeper emotions.

Sometimes family members need an objective professional who can help them learn to analyze emotional interactions and break a circuit of misunderstanding and hurt. Some chapters of the National MS Society have professional counselors on staff; other chapters can make referrals to knowledgeable therapists.

Parental guilt

Parents with chronic illness or disability often overwork--and neglect their own well-being--due to guilt. Will my illness deprive my children of their childhood? Will they grow up to be maladjusted adults? Am I burdening the kids with too much responsibility? Is my disability ruining their social development? These fears are not uncommon.

A National MS Society-funded study of psychological issues among adolescents in families where a parent has MS offers reassurance to some of these fears. It showed that many of these kids were more sensitive to the needs of others and more self-reliant than their peers.

"All children arrive in the world with a package of guilt for their parents," said Ms. Sullivan with a wry glint in her eyes. "When MS arrives, the parents get an added load." She thinks that parents who worry about giving their children too many household chores can gain perspective if they recall the chores they did when they were their children's ages. It also helps to speak with other parents about what they expect their kids to handle. With or without MS in the family, children should have some household responsibilities.

Parents also need to remember that it's comforting for children to see their parents doing all they can to take care of their health. "Children are reassured when they see their parents keeping medical appointments, taking medication on schedule, exercising, getting rest, eating well, and keeping a reasonable pace," said Julie Down, a licensed marriage and family therapist in Oklahoma. "If parents with MS can't or won't monitor their own physical well-being, anger and resentment can spread throughout the family."

Different ways to play

Talking isn't the only way that families communicate.

"Having fun together is essential to families' psychological health," said Julie Down. "Laughter is healing. It defuses anger and frustration. The endorphin release brought on by laughing even has physiological benefits."

A parent's approach to play is always an opportunity to be a positive role model. Greg Vellner's children Tommy, age 8, and Jenny, age 13, have a father whose won't quit attitude they can emulate.

"We have a different way of playing ball," the National MS Society's 1994 MS Father of the Year explained. His vision is compromised by optic neuritis, so he'd have a hard time seeing a ball thrown back to him. The solution? "My kids have learned to roll the ball to me." Sometimes simple adaptations like this end up being more than fun. "I believe it's better for my children to see me try and fail than to see me not even make an attempt. I hope I'm showing my kids that love doesn't stop just because I can't ride bikes with them," Greg Vellner said.

Parents who have physical disabilities can cheer from the sidelines as enthusiastically as able-bodied parents. And with imagination and willpower, parents with MS can find ways to adapt activities. They can play catch from a lawn chaff, take up pond fishing and storytelling, or get in the habit of selecting quality TV to watch with their kids.

When parents set healthy examples and keep lines of communication open, they send their children a clear message: "Even though we can't control MS, we can and do control the ways we respond." It's a powerful lesson for living.

SOME HELPFUL RESOURCES:

The National MS Society publishes 4 booklets for parents and children.

* "At Our House", a coloring book for children ages 3-5

* "Someone You Know Has MS: A Book for Families", for children ages 6-12

* "When a Parent Has MS: A Teenager's Guide", for older children and teenagers

* "Plaintalk: A Booklet about MS for Families"

Call 1-800-FIGHT MS, option #1, to ask for any of these booklets.

Parenting with a Disability is a free quarterly newsletter from Through the Looking Glass. 2198 Sixth St., Suite 100, Berkeley, CA 94710-2204. Tel: [phone] (voice), 800-804-1616 (try); web site: www.lookingglass.org

Multiple Sclerosis: A Guide for Families, edited by Rosalind Kalb, PhD (See page 63 for a review and ordering information.)

Mary Harmon was diagnosed with MS when her son Devin was 4 months old.