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