It’s All Where You Put Your Focus |
When I was 18, I informed my doctor I’d be attending college in the fall.
Later, he asked to speak to my parents privately. He told them that, because I
have Duchenne muscular dystrophy (DMD), they shouldn’t expect me to
survive to graduate.
 |
|
Scott
R. Bennett |
Well, I finished college. I’m now in my 40s and working as a software
engineer. Ironically, five years after making that statement, the doctor passed
away.
Most predictions are based on statistical averages and not absolute certainties.
In fact, the most accurate prediction that can be made is that you and your
family should be prepared for anything.
Maintaining a positive attitude is certainly difficult, but just as certainly it
will help your child do the same. 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 to deal
with the physical limitations of my disability.
I hope you and your family will learn together how to live with and adapt to
your child’s neuromuscular disease, like making it part of a school
project. You’ll probably find that by working together, you’re
helping both your own and your child’s emotional stability move further
along. Yes, challenges lie ahead, but you’ll also deal with those
together, when the time comes.
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 had
to learn to adapt my life to my disability, I explained. I think that response
made my father feel a lot better about my having DMD.
I’ve never felt that I was facing a fatal disease, but rather a disease
that meant my life span would probably be shorter than average. I guess
it’s all in how you look at it. Rather than focusing on quantity —
how many years of life? — focus on quality — how much life in those
years?
Scott R. Bennett
Software Systems Engineer
Taunton, Mass. |
Taking on the Challenge
"Fishing" by Shawna Borman, spinal muscular atrophy 2 |
The stress reaction is the body's response to a challenge. It's a state of
heightened physical tension that prepares you to take action to deal with the
challenge. A little stress is useful at times of threat. It can keep you alert
and on your toes. But stress can get out of hand and become overwhelming, so
that it prevents you from coping with the very threat that has produced it.
Headaches, nausea, insomnia, muscle stiffness, accidents, and inability to work
all can be signs of too much stress. Severe or prolonged stress can make you
vulnerable to a number of serious illnesses. To safeguard yourself and your
family in the days ahead, it's crucial for you to bring your stress down to a
manageable level so that you have the energy to sustain the intimate, emotional
relationships we all need.
| When we first
learned our child’s diagnosis, we naturally were very frightened and
uncertain about the future. As time has unfolded, we’ve learned that we
can do things we didn’t think were possible — we can adapt to the
uncertainty, control the fear, cope with changes as they occur and still have a
“normal” happy family life. |
|
When we believe we lack the resources to cope with a serious problem, intense
anxiety results. People handle that anxiety in different ways. Many distort the
situation to relieve their distress. Sometimes, for example, parents will not
accept the diagnosis of progressive neuromuscular disease for weeks or even
months. This flight from reality is one way people try to ward off painful
feelings — by refusing to face the truth.
Others defend themselves with another kind of distortion — inappropriate
anger. They may get angry with the physician who made the diagnosis or with the
doctors who failed to make it earlier. Their anger may be directed at a world,
at a universe, in which a disease like this can be visited on a child, or even
at a Supreme Being who allows such a misfortune to occur.
Or they may become angry with themselves and/or their spouses for bringing a
child with neuromuscular disease into the world. This response channels the
force of their feelings away from the actual problem in order to cut off
unbearable anxiety and fear.
You will have taken a giant step toward coping if you are able to realize in
your innermost self that the stress you are experiencing can be managed. . .
that you have the capability to do it . . .that there is a network of support
available to help you do it. As a start, test yourself. Recall difficult times
in your life when you have coped successfully, although it had often seemed you
would not be able to. Make a list of friends, relatives, and other individuals
you have been able to count on in past crises, and in this present one add the
Muscular Dystrophy Association as a firm source of support.
Also, begin now — in your mind's eye — to create images of coping,
visualizing how it would be to break through your feelings of despair. Your
inner conviction about this will act as a self-fulfilling prophecy. You will
cope if you believe you can.
Keeping Hope Alive |
by Albert Freedman
I remember the simple congratulatory message I received from a friend a few days
after Jack’s birth. “You are now a family,” she wrote, quite
matter-of-factly.
Yes, indeed we were a family, and I’ll always remember the hope baby Jack
brought to our lives. I remember thinking about birthday parties, ballgames,
bicycle rides, and perhaps a little brother or sister, or even two. For the
first six months of Jack’s life, I pictured myself coaching his Little
League team and taking him to Phillies games. I pictured myself watching Jack
perform in his elementary school play and play in the school jazz band just
like Dad.
Those early days of parenthood were full of possibilities.
And then one day, the possibilities began to fall away. First, our pediatrician
told us Jack wasn’t developing normally. Then a pediatric neurologist
expressed serious concern and told us to have further testing.
A few minutes after conducting an EMG test, the doctor told us Jack was likely
affected by a neuromuscular disease called spinal muscular atrophy (SMA).
The doctor told us there was no treatment or cure for SMA. Jack would be
severely physically disabled, and then he would die of respiratory
complications. Babies with his type of SMA were lucky to live to age 2, the
doctor reported.
The doctor explained we would have an appointment with another specialist later
in the day to hear more about SMA and how we would care for Jack for the next
few months. He motioned to us to stay put with Jack in the examining room.
“Take all the time you need,” the doctor said. Then he walked out
and closed the door, leaving us with each other, our baby and our thoughts. But
the doctor didn’t leave us with any hope.
Rebuilding Hope
In a matter of minutes, Anne and I were thrust into a parenting world
light-years from where we’d started.
Somehow many of us rediscover our sense of hope, a little at a time. And when we
keep hope alive, we find ourselves feeling more positive and better prepared to
care for our affected family members.
Today, I feel very fortunate to be Jack’s father, despite the challenges
my son faces. Slowly, as these years have passed, hope somehow has returned to
my vocabulary and to my heart.
The words of others helped us reclaim and build our sense of hope one piece at a
time. Through organizations such as MDA, we contacted families with similar
experiences who helped us feel we weren’t alone. Jack’s home care
nurses, therapists and teachers all view him as a person worth getting to know,
and they focus on what Jack can do.
Our MDA clinic became our primary resource for Jack’s medical care. Even
in the middle of the night during the scariest of medical crises, the
professionals at the hospital somehow remain steadfast in their hopeful
approach to caring for children. We continue to be lucky to have so many caring
people in Jack’s corner.
Jack’s Hopes
It’s easy to look at our son and see only his wheelchair. It’s easy
to listen to Jack and hear only his broken speech patterns and the words that
can’t be understood.
Entering Jack’s bedroom, it’s hard to miss the pulse oximeter, the
feeding pump and the BiPAP breathing machine.
These are indeed things Jack needs, but these aren’t the things Jack is
focused on. These aren’t the things Jack hopes for day-to-day.
Like any other 7-year-old, Jack hopes his friends will spend time with him. He
hopes for birthday presents, family outings, holiday celebrations and success
with his schoolwork. Jack hopes for new computer games. He hopes we’ll
take him places with lots of space to zoom around in his power wheelchair. Jack
hopes his little sister will be fair and take turns. He hopes to go swimming at
the pool. And he hopes Dad will come home from work in time to give him a bath.
So it’s Jack himself who now shows us the way, with his own sense of hope
as our inspiration. Despite the many challenges he faces every day, Jack is a
happy, motivated little boy who hopes for many of the same things other kids
hope for. And seven years following his diagnosis, we’re indeed grateful
to have Jack sharing his hopes with us.
Albert Freedman, Ph.D., is a child and family psychologist in private practice
and at Delaware Valley Friends School in Chester County, Pa.
Jack Freedman celebrates his 11th birthday in 2006.
Reprinted from Quest, February 2003,
©2003 Muscular Dystrophy Association Inc.
|
Facing Your Feelings
“Friends” by Troy “T.C.”
Blackburn, Duchenne muscular dystrophy |
Your first task is learning to deal with your feelings in the most constructive
way. The people who flee from their distress play a game of make-believe,
pretending nothing has happened to disturb them seriously. But suppressed
feelings have a way of backfiring, of taking control. Studies of people
undergoing operations show, for example, that those who deny their fear do not
recover as quickly as those who allow themselves to experience their underlying
anxiety. Similarly, the more honestly you face the pain and shock of learning
the diagnosis of your child's condition, the more quickly you will reduce your
level of stress and gain a sense of competence.
Allowing yourself to get in touch with and experience your feelings does not put
you at the mercy of uncontrolled emotions, but rather leads you to sources of
strength. If you cannot acknowledge your feelings to yourself, you can't share
them with those around you.
So denying your feelings has the hurtful consequence of cutting you off from the
precious support that friends and loved ones can give you, support that is
all-important in helping you to cope. The effect of denial is to build a wall
between you and others — especially between you and your family, between
you and the child you love. That child will experience you as withdrawing and
hostile, and will come to feel rejected and unlovable.
| It’s very
common for people to lose their sense of humor, or sometimes stop laughing
altogether, when a child gets sick or becomes disabled. I strongly feel that is
actually the time to keep laughing despite the fears and confusion which might
be assailing us. We must develop and nurture a healthy sense of humor, look at
the lighter and brighter side of things, and continue to laugh at life in the
midst of our despair if we want to survive. |
|
The energy generated by great stress can be used positively or negatively
— the choice is yours. If the energy is used to deny reality or your
feelings, it cannot be used constructively. If the energy is channeled into
prolonged anger and bitterness, it is no longer available for a positive
response to your situation. Even more damaging, if it goes into attitudes of
guilt and self-blame for having produced a less-than-perfect child, it can
undermine your self-esteem, your family and your marriage.
If you direct the tremendous force of this energy into coping creatively with
your situation, however, it has the power to raise you and the members of your
family to a new and more meaningful level of functioning, relating, and living.
Your attitude — the way you view your world — is what will
determine the direction your life takes at this point. A well-known writer has
put it well: "What the caterpillar calls the end of the world, the master
(of living) calls a butterfly."
The Other
Children in the Family |
by Christina Medvescek
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 would grow up
“maladjusted” because of a lack of parental attention. But more
recent studies have found that siblings’ adjustment level is generally
good.
But the sibling experience isn’t easy, especially as children see their
affected brother or sister decline physically. Sadness, resentment, jealousy,
embarrassment, frustration, guilt and not a little fear — all are part of
the story.
Siblings usually have the longest-lasting relationships in a family. It’s
not uncommon for an adult sibling, having outlived the parents, to take on
caregiving responsibilities for an affected brother or sister.
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 ran an MDA family support group in Wichita, Kan.
But a good family climate can’t guarantee that kids won’t 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, they’re ready to
begin talking about it. If older children haven’t asked about death,
maybe they’re worried they’ll cause something bad to happen by
bringing it up.
“Children need to know that when parents cry about such things,
it’s 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 don’t 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.
Don’t 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.
- Don’t expect children to assume adult roles. Caregiving
is a character-building experience and many sibs say they benefited from it.
Too much caregiver responsibility robs siblings of their growing-up experiences
and can make them bossy and authoritarian.
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 they’re young. Even though they understand
intellectually that their siblings with disabilities need more attention,
children don’t yet have good emotional control and often act immaturely.
Be patient.
- Plan for the future. Even if you have few assets, it’s
important to draw up a will, appoint guardians, outline your wishes for the
affected sibling’s care, and establish a special needs 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. In
addition, talk with older unaffected children about their possible status as
carriers of a genetic neuromuscular disease.
Excerpted from “The Other Children in
the Family,” Quest, January-February 2004, © 2004, Muscular
Dystrophy Association Inc. |
The Importance of Reaching Out
You may have some work to do before you see your situation as a beginning rather
than an end. Standing in the way of a positive attitude may be mistaken beliefs
you hold, beliefs as to what your child's condition implies about you and your
spouse. Your next task is to look squarely at these misconceptions and see them
for what they are, for while the stress of coping with a child's neuromuscular
disease can bring a husband and wife closer together, it can also drive them
apart.
"It's Wheely Art" by MDA summer campers |
Parents often develop the superstitious conviction that their child's illness is
a punishment for something they have done. You may not be aware of these
thoughts and yet feel guilt-stricken for no logical reason. Your underlying
thought may be, "What's wrong with me, with my spouse, or with both of us
that we brought this damaged child into the world?" Or, in another
version, "Either I, my spouse, or both of us are failures as parents
because of our child's condition."
| At first, I
was very negative, and my husband was very positive. It tended to kind of drive
us apart because he couldn’t understand me, and I couldn’t
understand him. |
|
My wife and I had been unexpectedly launched into a world no
parent could imagine. But it was clear we needed to reach out. This was too
hard a situation to try to manage on our own. |
|
Ideas like these influence your feelings about your spouse and children and
affect your behavior toward them. Although wholly without justification, such
beliefs give rise to depression, guilt, and blame, the more so if your child's
illness is an inherited condition.
Because men in our society are brought up to suppress their feelings, the father
may find it very hard to cope with them now
If you are to maintain the caring relationship that is the foundation of your
marriage, communication between you and your spouse must open up at this time.
Allowing feelings of guilt and blame to cut off your support of each other can
threaten your future together. You need to work through your feelings jointly
if you can. By reaching out to each other, crying together, sharing your pain,
you strengthen the bonds between the two of you and create for yourselves a
safe and secure space in your relationship.
|
|
|
Husband and wife are likely to face separate emotional problems with respect to
their child's illness. If the disease is transmitted through a defective gene
carried by the mother, as it is in Duchenne muscular dystrophy, she may
experience profound feelings of guilt. Although, clearly, a genetic disease is
no one's "fault," she may blame herself and think that others are
blaming her, and her feelings may drive a wedge between her family and herself.
A father, especially if the child is a boy, may have a great difficulty
accepting the fact that he has a disabled son, a son who will never be able to
do some of the things fathers want their sons to be able to do. Because men in
our society are brought up to suppress their feelings, the father may find it
very hard to cope with them now.
If you and your spouse need help in standing together at this time, it's
important — both for the two for you and for your children — to
turn to a physician, member of the clergy or other professional who can offer
you guidance. Your efforts to understand and support each other in this initial
period of stress will pay dividends later.
When Family Doesn't
Understand |
When the chips are down, we expect our extended family (parents, adult siblings,
aunts, uncles and cousins) to be there for us. Sometimes they are, but
sometimes they aren’t.
Where we hope to find support, instead we find empty phrases, or criticism, or
denial, or worse, nothing at all. Instead of helping us cope, their responses
make things harder. Comments and actions that would bounce off coming from a
stranger cut to the heart because the source is a family member.
What Do They Do?
The unhelpful ways extended families may respond to neuromuscular disease
include:
- Denying, Minimizing, Avoiding
- Hurtful Statements, Criticisms and Unhelpful Advice
- Treating Children Unequally: catering to the affected child to the exclusion of
unaffected siblings, or vice versa
- Cluelessness: not understanding the situation and not realizing the effects of
what they say and do
Why Do They Do It?
People may assume family members behave insensitively because they don’t
care, but that’s rarely the case. Usually other factors are at play,
including:
- Family Dynamics: If you had communication difficulties or lack
of family support before the diagnosis, you’ll be facing the same thing
after it. On the plus side, a family with strong relationships usually will
come through in the end. Time, patience and education are the keys.
- Grief often underlies many seemingly heartless acts,
especially by grandparents. They’re going through a difficult process,
too. They may be overwhelmed and not know what to do, so they don’t do
anything.
- Personal Discomfort: Inappropriate or insensitive reactions
often are an unconscious way of easing pain from strong emotions like grief and
helplessness.
- Guilt: Neuromuscular diseases usually are genetic and
relatives subconsciously may feel responsible. People sometimes deny the
problem exists by saying, “No one else in our family has it, so why would
you?”
- Fear and Uncertainty: People often don’t know how to
react to disability or serious illness. They’re afraid of the unknown,
and disability scares them. Lack of education about the disease and the way it
progresses also makes it difficult for relatives to respond appropriately.
- Stereotypes and Cultural Assumptions
What Can You Do?
Some tried-and-true solutions include:
- Communicate: Set clear boundaries, say what you need and what
you expect. Practice saying it in advance. “I need…”
“It would help me if you would…” Focus on what you want and
need, not on blame and accusations. You may need help from a counselor or
neutral third party. Or it may be more comfortable to write a letter than to
speak in person.
- Educate: Teach people about the disease and how it manifests
itself. Give family members books, MDA pamphlets and information obtained
online. Invite selected family members to come to an MDA clinic appointment.
If you’re choosing to be upbeat and focus on the positive, or to treat
your child as normally as possible, tell people and ask them to do the same.
Educate people about how to act around someone with a disability, by helping
them get to know your child better.
- Blow It Off: Don’t waste precious emotional energy
trying to straighten out every clueless relative. Practice what to say when
hearing unwanted advice, criticism or insensitive comments: “Thank you
for your concern”; “I’ll keep that in mind”; “I
appreciate that you care. We’ve decided that this is the best way to
handle the situation.”
Try to focus on the person’s intention, rather than the words. If you
have the energy to educate them, then go for it. But don’t feel as if you
have to fight every battle.
- Accept and Move On: Your family may never become the support
system you want, no matter what you do or say. Don’t expect from somebody
what they really can’t give you. This attitude can be emotionally
liberating. Above all, don’t blame yourself for your family’s lack
of support.
- Get Counseling: If you can’t let go of your expectations
no matter what you do, discuss your feelings with a counselor, in order to get
help moving past a toxic situation.
- Find Other Support: For many people, their best support comes
not from family but friends. Minimize contact with people who bring you down.
Maximize time with those who respect and support you and your child. Support
also can be found in church communities, local MDA support groups and online
chats.
- Focus on the Positive: Given time, many people adjust and
their wonderfulness emerges. Accept that they’ll offer what they can when
they can, and not before. In the meantime, focus on positive aspects of the
relationship, while taking steps to insulate yourself from the negative.
Adapted from “When Family Doesn’t
Understand,” Quest, April 2002, © 2002 Muscular Dystrophy
Association Inc. |
Strength in Family Relations
Another mistaken belief common among parents of children with progressive
neuromuscular disease is that everything else must take second place to the
care of the child who is sick. A mother — especially if she still has
feelings of guilt — may become totally absorbed in this child at the
expense of her marital relationship and of the other children in the family.
Inevitably her "self-sacrifice" leads to problems for all concerned,
including the child with neuromuscular disease. The importance of maintaining a
home life that meets the needs of all members of the family cannot be
underscored too strongly.
“Free to Fly” by Julia Lee Sanders, congenital
muscular dystrophy |
In the family that furthers the best interests of each family member, husband
and wife have a marital relationship that in some ways takes precedence over
their role as parents. They safeguard their relationship by giving themselves
time to be alone with each other — for companionship, a joint social
life, the pursuit of mutual interests, and intimate relations. The children
understand that there properly is a part of their parents' lives in which they
do not participate.
A strong, sharing relationship between husband and wife is especially crucial in
the family with a child who has a progressive neuromuscular disorder; it is the
source of sustaining emotional support that acts as a powerful antidote to the
stress each of them experiences.
Grandparents and other members of your extended family may be able to give you
and your spouse time to be together – or if you are a single parent, time
to pursue your social life as a single person.
|
My advice to
parents is, you aren’t the only ones watching your child go through the
effects of muscular dystrophy. Your other children are experiencing it, too,
only they may not know how to handle what they’re feeling. Watch them,
pay attention to them, and look for any signs that they might need some help
dealing with their emotions. |
The brothers and sisters of the child with a neuromuscular disease must not be
made to feel that their needs are disregarded. They should assist with the
affected sibling but should not be deprived of outside activities. Your other
children will probably have feelings of guilt about being "normal"
when their brother or sister is not, and you and your spouse will have to help
them with these feelings. They will adapt well if no more emphasis is placed on
the affected sibling's condition than is necessary. Brothers and sisters ought
never to be pressured to take care of the social needs of the child with a
neuromuscular condition, who should be encouraged to develop his or her own
friendships.
Children in all families get into arguments; the fact is that they learn how to
get along with other children by first working, playing, and fighting with
brothers and sisters. Short of preventing injuries that could result from their
children's squabbles, parents should let their offspring work things out by
themselves. The hands-off approach is a matter of special urgency in your
family. Your sick child needs practice in becoming emotionally self-reliant and
independent, since he or she cannot avoid dependence of a physical nature.
 |
|
One more point about the "ideal" family — the family that is
most stable, that protects its members, and that promotes their development. In
such a family, the parents make the rules and set the consequences for breaking
them. The parents also make the family's final decisions, although they may
permit input into decision making from the children. In the ideal family,
children earn privileges by taking responsibility, but they are not thrust into
adult roles.
Going It Alone?
Advice From Single Moms |
Joy and Hope
“I decided I’m just going to make his life as good as I can for as
long as I can.”
“I’m showing him that, hey, we’re in a wheelchair but we can
do things. Have van, will travel. We’re still going to go places, do
things. It’s important that he realizes that.”
“I don’t feel that I’m burdened with it. He’s a
blessing.”
“I’ve really learned to be patient. He brings a lot of joy to my
life.”
Support System
“Share your fears and frustrations. You’re so used to doing it on
your own, you forget you can pick up the phone and ask somebody, ‘Hey, I
need somebody to come over today.’”
“My friends have pitched in wherever they can, whenever I need a break, or
just little things they’ve done for me.”
“Do not go into a shell. Get to know everybody at your kid’s school.
It’s good to know that everybody’s aware of your child.”
“You may not have father and mother and siblings, but you build a family
through MDA and through the people that get attached.“
Coping
“A lot of people ask me, how do you do it? I look up at the sky and say, I
pray every day, just let me get through this day. There’s no magic pill.
I just get through the day.”
When you feel overwhelmed, “Sit down and have a good old boo-hoo. Get it
all out. Then pick yourself up and then you go again.”
“I’m going to the gym to build myself up because it is getting
harder now that he’s grown, even just rolling him.”
The Future
“I’m trying to save enough money to be able to hire help when the
time does come that I need it, because I know I can’t do it
myself.”
“You can pretty much take the effects of the disease in stride because the
kids will.”
“Don’t deal with the future. Deal with now. Take it one day at a
time. If you have to, take it an hour at a time.”
Adapted from “Going It
Alone,” Quest, October 2000, ©2000 Muscular Dystrophy
Association Inc. |
Teaching
Independence |
As children become adults, they naturally want independence from their parents.
But this can be tricky when children have severe disabilities, because parents
often remain their primary caregivers into adulthood.
Instead, a transition may be made to interdependence. This may include
ongoing physical and financial support from parents, but with boundaries,
responsibilities and, as one child development expert emphasizes, “no
victims, no martyrs, everybody has a life.”
Experienced parent-caregivers offer these tips for teaching independence skills
from an early age:
- Envision a future for both your child and yourself.
No one knows for certain what’s going to happen, so plan for the long
run. Encourage children’s dreams and goals and take time for your own.
Caring for the caregiver is an essential piece of teaching independence skills.
- Foster responsibility.
Devise realistic chores; find age-appropriate ways to let them direct their
health care; encourage participation in outside activities and volunteering.
- Help children get used to receiving and directing care from others.
Outside assistance enables more independence for everybody, even when children
only want their parents’ help. Part of adulthood is knowing how to get
help and how to deal with poor service.
- Don’t take over.
Patience, patience, patience. Let children do what they’re able, even if
it takes longer. As they age, ask questions but respect choices. Allow children
to deal with the consequences of their mistakes. If they forget to charge their
wheelchair batteries and get stuck at school, they’ll probably remember
in the future.
- Get assistive equipment.
Technology is the ticket to independence. Research your options. Once you know
what you want, there often are creative ways to finance it.
- Push past the fear.
Independence is scary for parents, but do it anyway. Says one parent-caregiver,
“They say you should give your children roots and wings — in our
case it’s roots and wheels.”
Excerpted from ”Parent-Caregiver
Transition – Learning to Let Go,” Quest, November-December
2004, © 2004, Muscular Dystrophy Association Inc. |
What Your Child Needs
When a child is seriously, chronically ill, the ideal family model is much more
difficult to achieve, but doubly important to strive for. Your efforts to
prolong your child's independence by forgoing your understandable impulse to
overprotect — as well as by emphasizing self-help aids — will have
many beneficial effects, not the least of which is to lessen the possibility of
future emotional and learning problems. If your child is already doing chores,
these responsibilities should continue. He or she should be disciplined as are
the other children in the family and also receive normal rewards for
achievement.
“Fishing Buddies” by Samuel Williams,
Charcot-Marie-Tooth disease |
Independence to a small child almost always means independence from mother. The
toddler with a neuromuscular disease such as muscular dystrophy is just at the
age when other children begin to give up their dependence on mother in favor of
"grown-up" activities like buttoning their own clothes, tying their
shoelaces, and exploring the world by themselves. The child with muscular
dystrophy or another progressive neuromuscular disease has the same need to
move away from mother but is, in fact, becoming more dependent on her
physically.
One way to support the deep-rooted need for self-reliance is to make sure that
the father plays an active role in the child's life. As children — all
children — move toward independence, the father takes on a new
significance in their development. Even with the greatly increased
participation of women in the world of work, fathers still tend to represent
achievement, competition, aggression, autonomy, mastery.
Special sports and play groups and activities like arts and crafts and music are
important outlets for the child with neuromuscular disease.
|
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 siblings, with the same expectations, while still
helping me deal with my physical limitations. |
Whether boy or girl, a child needs the presence of a man — it could be an
uncle or a friend — to serve as an example, as a model, in the thrust
toward independence. For children with a progressive neuromuscular disease, the
father figure is especially crucial. When children with neuromuscular diseases
have emotional problems, these problems tend to be related to a lack of models
— as well as a lack of outlets — for the expression of aggression
and the development of a sense of mastery.
Your child needs opportunities to experience the feelings of competence and to
express the aggression that is normal at his or her age. In the usual course of
development, at the same time that children gain better coordination and become
able to take care of many of their own physical needs, they begin interacting
regularly with other youngsters and learn the art of give and take in such
interaction. Since many activities will not be possible for the child with
neuromuscular disease, he or she must be given appropriate outlets — for
example, the opportunity to participate in special sports and play groups and
activities like arts and crafts and music for the release of feelings.
 |
|
Having outlets for feelings of aggressiveness in play and fantasy will benefit
your child not only by providing scope for normal development but also by
helping to maintain muscle strength and preventing a withdrawal into social and
emotional isolation. Each parent has a part to play in striking the balance
between protecting the child from failure in activities that are too demanding,
on the one hand, and unnecessary dependency, on the other.
Resources for Families |
Muscular Dystrophy Association
MDA offers support groups, online chats, and referrals to social workers and
family counselors. Check with your local MDA office or clinic.
MDA BOOKS AND BOOKLETS
MDA publishes a variety of materials for individuals and families affected by
neuromuscular diseases. Most publications are available free online
(www.mda.org) or through your local MDA office.
These MDA publications are about children with neuromuscular disabilities.
QUEST
(MDA’s national magazine, available online or through local MDA offices)
“Beating the Bully Problem,” March-April 2005
“Children and Chores,” May-June
2005
“Going It Alone” (single
parents of children with neuromuscular disease), September-October 2000
“Hard Questions: Talking With Children About
Their Neuromuscular Diseases,” March-April 2000
“In Trusts We Trust” (financial
planning for children with disabilities), March-April 1998
“The Other Children in the Family” (unaffected siblings), January-February 2004
“Parent-Caregivers: Learning to Let
Go” (transition to adulthood), November-December 2004
“Taking Time Out for the Rest of Your
Life” (respite care), May-June 1999
“To Push or Not to Push?” (dealing
with child’s shyness), July-August 2002
“Uncertain Futures, Unexpected
Rewards” (infants with neuromuscular disease), May-June 2001
“What to Tell the Children” (talking to children about their disease), September-October 2004
“When Family Doesn’t Understand” (unhelpful relatives), March-April 2002
Books About Parenting Children With Disabilities
After the Tears: Parents Talk About Raising a Child With a Disability, Robin Simons, Harcourt Brace Companies, 1987
Changed by a Child: Companion Notes for Parents of a Child With a
Disability, Barbara Gill, Doubleday, 1997
Growing Up Strong: What Every Parent Should Know About Self-Concept in
Children With Long-Term Illnesses, Mary Burkett, R.L.
Bryan, 1999
Living With a Brother or Sister With Special Needs: A Book for Sibs, Donald J. Meyer, Patricia F. Vadasy and Rebecca R. Fewell, University of
Washington Press, 1996
Raising a Child With a Neuromuscular Disorder: A Guide for Parents,
Grandparents, Friends, & Professionals, Charlotte E.
Thompson, M.D., Oxford University Press, 1999
Reflections From a Different Journey: What Adults With Disabilities Want All
Parents to Know, Ed. by Stanley D. Klein, Ph.D., and John
D. Kemp, McGraw-Hill, 2004
The Resilient Family: Living With Your Child’s Illness or Disability, Paul W. Power, Sc.D., and Arthur Dell Orto, Ph.D., Sorin Books, 2003
Special Needs Planning Guide for Families, Patricia
Freedman, J.D., Ilana Gordon-Brown, Cynthia R. Haddad, CFP, Harry S. Margolis
and Theresa M. Varnet, Jewish Family & Children’s Services (Mass.),
2004
Taking Charge: Teenagers Talk About Life & Physical Disabilities, Kay H. Kriegsman, Ph.D., Elinor L. Zaslow, M.A., & Jennifer
D’Zmura-Rechsteiner, M.A., Woodbine House, 1992
Uncommon Fathers: Reflections on Raising a Child With a Disability, Ed. by Donald J. Meyer, Woodbine House, 1995
You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children
With Disabilities, Stanley D. Klein, Ph.D., and Kim
Schive, Kensington Publishing, 2001 |
|
