QUEST Volume 11, Number 1, JANUARY/FEBRUARY 2004

by Christina Medvescek

I discovered that my sons, ages 10 and 13, were drinking a soda apiece as an after-school snack. This is gonna stop, I announced firmly. But instead it suddenly shot way beyond soda pop.

"Does Sarah still get a soda then?" the boys demanded. Their older sister, 20, has cerebral palsy and mental retardation. She enjoys a soda after school each day the way some people savor a cocktail after work. We let her have it because, given her set of life facts, this is the perfect treat for her.

"Well, guys, you have to understand," I began reasonably. "Sarah has a disability and ..."

"Disability disability disability!" yelled the youngest, to my shock. He had never talked like this about Sarah before. "You always use that excuse!"

"Yeah, and why does Sarah get a TV in her room and we dont?" chimed in the middle child.

"And she doesnt have to do as much work as we do!"

"And she acts like shes the queen!"

"Its not fair!!"

The Sibling Experience

When a family member has a disability or a chronic disease, everyone else in the family shares in the experience, too. But each family members experience is unique, based on his or her position and role in the family. In other words, its one thing to be the parent of a child with a disability and another thing to be the brother or sister of one.

Siblings of children with neuromuscular diseases have a distinctive growing-up experience that shapes them in positive and negative ways.

It used to be thought that unaffected siblings the ones without a disability would grow up "maladjusted" because of a lack of parental attention. While its true that neglect can cause serious problems, the reality is that studies of unaffected siblings have found that their adjustment level overall is good. Many times unaffected siblings grow into compassionate, tolerant adults who work in helping fields and who have caring relationships with their affected brothers and sisters.

But the sibling experience isnt a cheery Pollyanna story, especially when sibs have to watch helplessly as their brother or sister slides steadily down the slope of a progressive neuromuscular disease. Sadness, resentment, jealousy, embarrassment, frustration, guilt and not a little fear all are part of the story.

A brother or sister may have to grow up before realizing how much having a sibling with a neuromuscular disease shaped the adult he or she became. (See "From Where I Sit" for an account of a life-shaping sibling experience.)

Whats Normal?

"Normal," says Lori Smith, the adult sister of a woman with myotonic muscular dystrophy (MMD), "is just a cycle on the washing machine."

In "normal" families, younger brothers accuse older sisters of acting like queens. Its normal for siblings to bicker and feel extremes of love and hate. Throughout history, siblings have competed for their parents attention, or felt that nobody understood them. The sibling relationship, like the parent-child relationship, is a pungent emotional soup.

Its also normal for siblings to have the longest-lasting relationship in a family. Its not uncommon for an adult sibling, having outlived the parents, to take on caregiving responsibilities for an affected brother or sister.

The sibling experience is one of the hidden side effects of neuromuscular disease. But theres no need to keep it hidden. Here, in the words of parents and siblings, is a little ray of light shed on some of "the other children in the family."

Tester and Comforter

	The Smith family (left to right): Bill, B.J., Tori and Cindy

Bill Smith hosts MDAs "DMD Parent Chat" on Tuesdays and Thursdays as iowa-bill. He and his wife, Cindy, of Iowa City, have two children, Tori, 14, and B.J., 12. Duchenne muscular dystrophy put B.J. in a wheelchair at age 9, but not without Tori checking it out thoroughly.

"When B.J. went to a chair full time, he could not stand at all," Smith recalls. "We told Tori and she said she understood. But a couple days later we came home from the grocery store to find B.J. lying on the floor propped up with pillows and Tori sitting playing a game with him.

"She told us very sheepishly that she thought B.J. was trying to pull a fast one on us, so she had tried to get him to stand. When he went down she made him comfortable and played with him."

Testing and comforting a typical sibling mix. On one hand, Tori is one of B.J.s greatest competitors, on the other, his greatest champion.

Although she acts as if B.J.s diagnosis doesnt bother her, for several years "a shy girl became even more reclusive and much more of a homebody," Bill says. The family pediatrician prescribed a low dose of antidepressants, and the family took other steps to help her find supportive people to talk to about her feelings. (See "Parental Dos and Don'ts.")

Tori now enjoys a close circle of friends and a fairly typical relationship with B.J. Shes a strong advocate, taking B.J.s side with kids and teachers, and being fully informed about his medical condition as it unfolds. But she doesnt let B.J. get away with much and still complains that the world revolves around him. The disability is a part of the mix.

Says Bill, "One of the things that makes us proud as parents is that weve seen them arguing till theyre red in the face and B.J. will drop something, and Tori will pick it up and hand it to him gently and keep arguing like it never happened."

Overwhelmed and Overlooked

Lori Smith (left rear) with her sister Barb and parents, circa 1984; Barb (in red at right) with Lori's sons today

Lori Smith, 33, loves her big sister Barb, 41, but they were never close. Barb has the severe, congenital form of MMD, which causes muscle weakness, extreme lethargy and fatigue, and, in Barbs case, learning impairments.

An older sibling died at age 1, before Lori was born. The girls father, Don, became completely disabled by adult-onset MMD when Lori was in fifth grade, and died shortly after she graduated from high school.

"You tend to feel forgotten a lot," she says of the experience. The family sagged under the combined weight of sorrow and disability, each person coping in his or her own way. Embarrassed by having a dad in a wheelchair, overlooked by an overwhelmed mother, haunted by worry that she also carried the disease, and convinced shed always be under the shadow of her sister, Lori tried to overdose on pills when she was in seventh grade.

"I just wanted to be away from it all," she says. "I didnt want to feel what I was feeling hurt, anger, frustration."

The act woke up her parents, who got counseling for Lori and the family. As a result, Lori became an overachiever, diving into school activities like drama, speech, honor society "anything to excel and get praise."

Today, with a husband, three children and a job as a licensed practical nurse, Lori still wrestles with her self-image and sibling role. While she credits the experience with helping her to grow as a person, she also sees the scars.

"Around age 18, I started feeling like an older rather than younger sister," she recalls. "Talking about my feelings is something that would have helped. But I think Mom was so encompassed with trying to take care of everyday business"

Lori now lives in Harvard, Neb., three hours away from her mother and sister. Barb lives on her own with a caregiver to help with cooking. Lori recognizes that when her mother dies, shell be in charge of her sister.

"As a nurse, I think she could do more for herself, but you know" Lori has a pragmatic outlook. "I have to watch that we dont take on a lot of debt because you dont know whats going to happen.

"I wont sacrifice my childrens lives for Barb. I wont promise she wont go to a nursing home. But I do promise she will be taken care of and watched and if I dont think the staff is doing a good job, believe me they wont be happy to see me coming."

Birth Order and Family Support

Laurie Harriss beloved older brother, Kevin Rink, had DMD. Laurie, Kevin and their middle brother, Jim, were very close, and Kevin was included in their neighborhood play as a referee or coach.

In the Rink family, it was a privilege to care for Kevin. She has a "resounding memory" of the first time her parents allowed her to take him for a walk in his wheelchair by herself. "It was like a turning point," she says.

But she didnt realize that DMD was fatal until Kevin suddenly died of pneumonia at age 16, when she was 11.

"And I didnt realize the complete fullness of that until I had my own child with DMD," says the Pittsburgh resident, now 36 with three children: A.J., 15; Jade, 12; and Hannah, 6.

"Having a brother with DMD helped me to have a caregiving attitude. That helped me to be more of a caregiver to A.J. I feel as though I can handle it."

The Harris family (clockwise from top left): George, Laurie, Jade, Hannah, and A.J. Above, Laurie with brothers Jim and Kevin Rink, circa 1969

She thinks that her positive experience growing up is due to her strong family support system. As the baby of the family and the only girl, and blessed with a loving live-in grandmother, Laurie says she never felt overlooked.

But she suspects that Jim may have felt differently, "because the middle child always does. My middle child (Jade) does. She has a big brother and a little sister who both need Mommys help, and she feels she doesnt get enough of what they get. I try to spend as much time with her as I can, because I know that middle person is a harder adjustment."

She and her husband, George, openly discuss A.J.s condition with the girls. Jade knows she may be a DMD carrier, and says thats OK, shell adopt. The girls enjoy some of the perks that come from A.J.s service as the MDA Pittsburgh Goodwill Ambassador, and they like getting priority treatment at rides at Disney World because of their brothers wheelchair.

Laurie says shes learned important life lessons from her experiences as both sister and mother of boys with DMD. She tries to instill in her children, "its what inside that matters the most. Not the external."

Love, Anger, Guilt, Frustration, Inspiration

Growing up in the early 1980s with a younger sister who was MDAs New Jersey Goodwill Ambassador was a little like being famous, says Donna Valicenti of Scottsdale, Ariz. "I thought it was pretty cool."

As a child, Donnas sister Dina, who has type 3 spinal muscular atrophy (SMA3), was very active as an MDA spokesperson. She smiled down from billboards across the state, and Jerry Lewis even called the house. MDA national sponsor ERA once completely redid Dinas bedroom as a birthday present.

Donna and Dina Valicenti at Disneys Magic Kingdom in 2001 (left) and the early 1980s

"They gave her a TV, a stereo, and wallpapered and carpeted her room," recalls Cookie Valicenti, the girls mother. "Donna stood there and, even though she was only a couple of years older, she didnt get any of this stuff. People tried to be nice to her but it wasnt the same."

Yes, there was some jealousy, admits Donna, but it was tempered by her strong love for Dina, "who is the most amazing person in the world." And Dina always shared her stuff.

The hard part was Donnas role as an emotionally needy middle child, and the devastating part was when her older brother, Dominick, was killed in a car accident at age 16. Dina was 10, Donna was 13 and the family went numb for several years.

"We were there but we were absent in every way," Cookie recalls.

For a while after Dominicks death, Donna stopped talking to Dina.

"I pretended to be mad at her but really I was afraid she was going to die, too, and I didnt want to lose someone else. It was always in my head that children with MD die around their early 20s. I knew every day when I looked at her that she would continue to get worse."

It was finally realizing that Dina also was suffering and needed Donnas support that reopened the bond between the girls.

While their love was strong, so were Donnas feelings of frustration and guilt at the constant physical demands of being a special needs sibling.

"It gets very wearing, emotionally, to constantly hear your name called Donna, I dropped this, Donna, I dropped that. I know I shouldnt feel that way. But sometimes you just want to tune it out." She says maturity has helped her deal with this better, but it remains a conflict.

Today, at ages 31 and 29, the women are best friends. Although buffeted by depression and a mild nervous breakdown in her 20s, Donna credits Dina with helping her learn to grow out of it. "If my sister can do anything, I sure as heck can."

Dina, a full-time wheelchair user, has a college degree and lives on her own in Berkeley, Calif., where shes active in disability organizations. Donna lives at home and recently went back to college after dropping out.

Donna quips, "In my family we joke that my sister actually doesnt need anyone to take care of her and that someday shell be the one taking care of me."

Beyond Fair

The great soda controversy opened my eyes to a situation in my family that I hadnt realized was there. I saw that, as a parent, my responses to these "disability moments" were important ingredients in the sibling soup (see "Dos and Don'ts").

What did I do? I listened. I empathized with the boys feelings of unfairness and after some discussion we came up a more "fair" soda policy.

Right or wrong, I defended the decision to allow Sarah to have a TV in her room while they cant (they still dont like it). I reminded them of chores and hard work that Sarah does that they dont notice. I took my youngest to a Sibshop for siblings of kids with disabilities (see "Resources for Parents and Sibs"). I talked privately to Sarah about her "queenlike" tone.

Whether all that will help or not, only time will tell. In the long run, the most important part may be simply that I took their feelings seriously. And I pointed out that in a family, each person is unique and has different needs that must be addressed in different ways.

"We are not all the same," I said, and everyone nodded.

 

Parental Dos and Dont's Families that foster a climate of security, belonging, love and caring all the positives of a healthy family system generally have children who cope well with the daily realities of neuromuscular disease, says Arden Peters, a psychologist who runs an MDA family support group in Wichita, Kan. But a good family climate cant guarantee that kids wont struggle with their difficult roles. Signs that sibs may be having trouble coping include: greater-than-normal bickering, anger, jealousy and complaining; acting out at school or home; sleep disturbances; clinging; and (ironically) overachieving and trying to be "perfect." How do you set a good family climate? Be open and honest with kids about the disability. "Parents should openly communicate about the disease process, treatment regime and especially their feelings," says Laura Frobel, a social worker and MDA support group leader in Warwick, R.I. When younger kids start asking questions about death, theyre ready to begin talking about it. If older children havent asked about death, maybe theyre worried theyll cause something bad to happen by bringing it up. "Children need to know that when parents cry about such things, its a sign of love and the children have done the right thing, not the wrong thing, in talking about it," Peters says. "They need to know that Mom and Dad can handle tears and the child should never try to protect them." Listen. Kids dont always need you to fix things. A sympathetic ear and a hug can go a long way. Be strong enough to bear their "bad" feelings. Says one mother, "After our son got his diagnosis, my oldest daughter asked if he would be in a wheelchair. She was concerned about him, and also about her being embarrassed. As much as I did not want to hear that, I had to let her express it." Counseling can be a valuable tool for some kids, but nontalkative kids may just need to know they can talk to you if they need to. Treat them as individuals. "Outside the home, children strive to be as much like others as possible. Inside the home, they want to stand out and feel special," says Becky Speulda, social worker and MDA family support group leader in Portland, Ore. Dont lay on guilt by emphasizing how much luckier they are than their affected siblings. Find time to connect privately with each child. Give them private space. Take vacations that cater to their interests, not just built around hospital visits or physical limitations. Help them connect with a caring adult who is there just for them. Let overachievers know you love them for who they are, not what they do. Dont expect children to assume adult roles. Too much caregiver responsibility robs siblings of their growing-up experiences and can make them bossy and authoritarian. But experts agree that kids should be asked to help with some of their siblings needs, and allowed to assume responsibility when they want to. Caregiving is a character-building experience and many sibs say they benefited from it. How much is too much? The key is that the parents remain in charge, and that they ensure helper siblings get to be kids, too. Remember theyre young. Even though they understand intellectually that their siblings with disabilities need more attention, children dont yet have good emotional control and often act immaturely. Be patient. Plan for the future. Even if you have few assets, its important to draw up a will, appoint guardians, outline your wishes for the affected siblings care, and establish a trust, in case your affected child outlives you. Even a small inheritance can derail state and federal disability benefits, putting an additional burden on siblings. (See "Resources for Parents and Sibs.") Talk with older unaffected children about their possible status as carriers of a genetic neuromuscular disease.

Resources for Parents and Sibs

Support

MDA Family Support Groups are available in many areas; contact your local office for information.

Pediatricians, school counselors, church pastors, local mental health associations or your childs case manager may be able to help you find appropriate sibling supports.

The Sibling Support Project is a national program dedicated to siblings of people with special health and developmental needs. The project conducts workshops for adults and children (Sibshops) on sibling issues, puts out a newsletter, and maintains a Web page at www.thearc.org/siblingsupport.

The Sibling Support Project
The Arc of the U.S.
6512 23rd Ave. NW, Suite 213
Seattle, WA 98117
(206) 297-6368

Parenting Issues

How to Talk So Kids Will Listen and Listen So Kids Will Talk by Adele Faber and Elaine Mazlish, William Morrow and Co., 1999, is a practical tool for sibling rivalry issues.

Find local parenting classes by checking the newspaper, your childs school and area social service agencies.

Estate Planning

Planning will protect your affected childrens government benefits should they outlive you. Because of the legal fine print in this area, as well as differences in laws from state to state, its best to consult an attorney about setting up a will and trust. Some places to go for general information include:

Family Village
www.familyvillage.wisc.edu/general/estate.htm.

KidSource Online
www.kidsource.com/kidsource/content4/estate.dis.all.3.3.html

MetDesk (Division of Estate Planning for Special Needs Children)
www.metlife.com
(800) 638-5433