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EDUCATIONAL HELPS ...
CHILDREN WITH DISABILITIES:
UNDERSTANDING SIBLING ISSUES
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A publication of the National Dissemination Center
for Children with Disabilities
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NICHCY Transition Summary 9 (TS9)
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1988, Resources Updated, 1994
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Approx. 26 pages when printed.
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PDF version
Abstract
For many families, raising a child with a disability
or chronic illness poses many challenges. Some of
these challenges focus on the relationship between
the siblings in the family which influences the
social, psychological, and emotional development of
each child. The relationship between brothers and
sisters in families that have a child with a
disability or chronic illness is examined in this
issue of NEWS DIGEST.
Many factors which affect sibling relationships are
described, and research findings concerning siblings,
one of whom has a disability or chronic illness, are
reviewed. Guidelines and suggestions for parents and
siblings, and siblings' suggestions for parents
are discussed. Additionally, several different
viewpoints about sibling relationships are presented
from a sibling with a disability; two nondisabled,
adult siblings who have a sister with a disability;
and a parent of several children, the youngest with a
disability. A support section concludes this issue,
listing suggested readings and sibling support
resources.
The birth of a child with a disability or chronic
illness, or the discovery that a child has a
disability, has a profound effect on a family.
Children suddenly must adjust to a brother or sister
who, because of their condition, may require a large
portion of family time, attention, money, and
psychological support. Yet it is an important concern
to any family that the nondisabled sibling adjust to
the sibling with a disability. It is important
because the nondisabled child's reactions to a
sibling with a disability can affect the overall
adjustment and development of self-esteem in both
children.
In any family, each sibling, and each relationship
that siblings have, is unique, important, and
special. Brothers and sisters influence each other
and play important roles in each other's lives.
Indeed, sibling relationships make up a child's
first social network and are the basis for his or her
interactions with people outside the family (Powell
& Ogle, 1985). Brothers and sisters are playmates
first; as they mature, they take on new roles with
each other. They may, over the years, be many things
to each other -- teacher, friend, companion,
follower, protector, enemy, competitor, confidant,
role model. When this relationship is affected by a
sibling's disability or chronic illness, the
long-term benefits of the relationship may be altered
(Crnic & Leconte, 1986). For example, the child
with a disability may have limited opportunities to
interact with other children outside the family;
thus, social interaction between siblings often takes
on increasing importance.
Each child's personality and temperment play an
important role in their response toward a sibling,
including one with a disability. Although both
positive and negative feelings exist in all sibling
relationships, McHale and Gamble (1987) conclude,
"...for school-age children and young
adolescents, these relationships tend to be more
positive than negative in their feeling tone.
Furthermore, children with disabled siblings appear
to have more positive and fewer negative behavioral
interactions than do those with nondisabled
siblings..." (p. 141). These positive aspects
include higher levels of empathy and altruism,
increased tolerance for differences, increased sense
of maturity and responsibility, and pride in the
sibling's accomplishments (Powell & Ogle,
1985).
Today, many areas have yet to be explored concerning
siblings. Parents and professionals, for instance,
need more information about sibling adjustment from
the perspective of different family systems (Skrtic,
Summers, Brotherson, & Turnbull, 1984). For
example, how do different family compositions -- the
single parent, adopted children, foster children, and
families of different cultures -- affect sibling
relationships? Powell and Ogle (1985) summarize the
importance of studying siblings when they state:
"Siblings have much to share; they have much to
teach those who wish to help them. They can guide the
actions of parents and professionals so that their
needs can best be met." (p. 5).
Nondisabled Sibling Reactions and the Family
Environment
Living with a brother or sister, including one with
a disability, can be rewarding, confusing,
instructive, and stressful. Siblings of a child with
a disabling condition express a range of emotions and
responses to that sibling, similar in most ways to
the range of emotions experienced toward siblings who
have no disability (Powell & Ogle, 1985).
Children react toward a sibling with a disability
with feelings of love, empathy, pride, guilt, anger,
and support; the predominance and prevalence of these
reactions have great impact on the levels of stress
and coping ability of the sibling with a disability.
The positive or negative nature of the relationships
between siblings and among family members may be
influenced by factors such as these:
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the family's resources;
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the family's lifestyle;
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the family's child-rearing practices;
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the kind and severity of the disability;
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the number of children in the family;
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the age differences between children in the family;
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the other stress-producing conditions that exist in
the family;
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the kinds of coping mechanisms and interaction
patterns that exist within the family; and
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the kind and quality of the support services
available in the community.
Each child's reaction to having a sibling with a
disability will vary depending on his or her age and
developmental level. The responses and feelings of
the nondisabled sibling toward the sibling with a
disability are not likely to be static, but rather
tend to change over time as the sibling adapts to
having a brother or sister with a disability and
copes with day-to-day realities. Preschool-aged
siblings, for example, may feel confused, afraid,
anxious, and angry about a brother or sisterisability
or illness. All children are different; the intensity
of a child's concerns, needs, and experiences
will vary from sibling to sibling, as will a
child's reaction to and interpretation of events.
The younger the child the more difficult it may be
for him or her to understand the situation and to
interpret events realistically. Nondisabled siblings
may resent the time their parents give to the sibling
with a handicap and perceive it as rejection. They
may wonder what is wrong with them that their parents
love their sister or brother with a disability more.
During the early years the nondisabled sibling may
mimic the physical or behavioral actions of the child
with a disability, or the nondisabled sibling may
regress in behavioral development. Later on, he or
she may be prone to extremes of behavior such as
"acting out" or becoming the
"perfect" child.
Elementary school-aged children may feel embarrassed
or ashamed as they recognize differences between
their sibling and someone else's brother or
sister. They may worry about "catching" or
developing the problem, and they may feel guilt
because they themselves do not have a disability.
They may also feel protective and supportive of their
sibling, and this may trigger conflicts with peers.
Young adults may have future-oriented concerns. They
may wonder what will become of their brother or
sister with a disability. They may also be concerned
about how the people they socialize with, date, and
later marry will accept the brother or sister with a
disability. Additional issues faced by young adults
may include genetic counseling when planning their
own families, and coping with anxiety about future
responsibilities for the brother or sister with a
disability or illness.
Let the Good Times Roll
[The article which follows provides the reflections
of an older sibling growing up with a sister with
mental retardation. They are now both adults, whose
pre-Public Law 94-142 experiences reflect both the
joys and frustrations of the sibling relationship.
"Let the Good Times Roll," by Terrell
Dougan, from We Have Been There, compiled by Terrell
Dougan, Lyn Isbell, and Patricia Vyas, copyright
1979, 1983, by Dougan, Isbell, and Vyas Associates.
Reprinted with the permission of the publisher,
Abingdon Press, 201 8th Avenue South, Nashville,
Tennessee 37202. No further reproduction or
distribution is allowed without the consent of
Abingdon Press.]
If you're sitting there wondering how much
damage it's going to do your other children to
(a) keep your handicapped child at home or (b) send
him to another home, I can clear that right up for
you.
See, they did a study several years ago. In
Psychology Today, they published the results:
"How Siblings of the Mentally Retarded Are
Affected."
Naturally, I ran to get my copy to see how I'd
been affected, growing up with a sister with mental
retardation. Was I damaged, having her like that? Was
I enriched? I frantically thumbed through the
article.
Are you ready?
Half and half. Half the siblings were somewhat the
less for having been around mental retardation. The
other half were somewhat more.
I almost threw the thing away. Now what help is
that?
As I went over my own life and how I cope in the
world today, I had to see that this half-and-half
thing is about all you can say about it. I feel, in
my own life, half damaged, half enriched by having a
sister with retardation.
But, carrying the notion a step further, look at
your own life, the things that happen to you in it,
the people you lived with. Don't you feel half
damaged, half enriched by EVERYTHING?
Well, then.
See, I've come to the conclusion that it
doesn't matter whether you keep your retarded
child home with your normal children. I mean, in the
long run, whichever you choose will not make or break
your normal or retarded child.
If you keep the child at home for as long as you do
your normal children, your normal children will be
sometimes embarrassed in the neighborhood. I was
embarrassed in the neighborhood when people called my
sister a dummy.
On the other hand, I learned how to press through
embarrassment, and I can now climb up on the stage
and perform and make speeches and sing and dance
because I long ago got over being embarrassed.
If your normal children are exposed to a retarded
brother or sister, they will learn patience and
compassion. I learned patience and compassion living
with my sister. On the other hand, I learned to feel
guilty whenever I got mad at her, so I have had to
learn how to deal with excess guilt.
If you send your retarded child to another place to
live, your normal children will always worry about
the brother or sister that got sent away. I worried
about my sister when she got sent away for a while.
But, on the other hand, I finally got more of my
parents' attention when I was with them, and I
liked that. Do you see how we can go on like this all
day?
I can give you the flip side of every argument for
keeping or for sending away that you want to drum up.
They're endless circles. Forget it. Do what is
going to make you -- you, the mother, and you, the
father -- the most comfortable. And know that you can
always change your mind.
When my sister throws a tantrum and kicks walls in,
I want to beat her up. When my sister comes up behind
me and hands me my purse that I left on the counter
while shopping, I want to hug her. When we go
shopping together, she has me help her count out the
money, which she is no good at; then I have her help
me find where I parked the car, which I am no good
at. We've learned what we can contribute to each
other. We learned when to stay out of each
other's way.
My parents kept my sister at home until she was in
her teens. Then she went to boarding school in
California for eight years. She is now in a private
apartment with a hired companion trained in behavior
modification. She has lost weight (she used to be
very fat) and is learning to play a guitar and cook.
She seems much more at peace with herself as she gets
older. I have her over for dinner with my family
sometimes; other times I have her come on a vacation
with just me.
Our life together as sisters six years apart (I am
older) was a lot less traumatic than outsiders would
imagine. In fact, I got so used to my sister exactly
the way she is that it always surprised me when
people discovered that she is handicapped. They would
get a look of tragedy on their faces, and then I
would try to match the mood; but unless someone
actually dramatized the discovery, I just accepted it
as a fact, like the sun coming up in the morning.
My parents made it that way. They must have had some
pain and tears, but what I seem to remember are the
"normal" times -- going out together for
dinner, going on trips, riding along the canal in
Venice (my sister singing along with the boatman),
learning to ice skate and swim (she only a little
slower than I).
It's as if they were saying, "This is your
sister Irene. She was injured at birth. She will have
a much harder time learning everything than you do.
She may never read or write. She loves sports,
gourmet food, and sewing. She hates dull movies,
blouses with monograms, and large drooling dogs that
jump on her. You, too, have likes and dislikes. You
are individuals with different likes and abilities
but with the same rights and purposes on this earth.
Let the good times roll."
And we did.
If I have any advice, looking back on my years in
our family, I would say that it's important to
let your normal children know that it's okay to
get angry with the handicapped brother or sister.
Whether or not my parents meant to give me this
notion, I had it. I felt guilty about ever getting
angry with Irene. If they had known my guilt, they
would have taken steps to help me get my anger out
when, for example, she wrote with lipstick all over
my dolls.
I realized this habit of mine the day she was
expelled (for her tantrums) from the group home I had
worked so hard to establish. Our parents were out of
the country at the time, and it fell to me to help
her move out and back home again. We climbed into my
car, and I let loose with a tantrum the likes of
which Irene herself has never produced. I yelled at
her about her behavior and how she had to learn to
control herself, and I found myself shaking with rage
and screaming. Two things happened. I realized that
for the first time in my life I had given myself
permission to be angry with her (I suppose that my
mind had to wait until my parents were clear across
the ocean!), and at that moment she was reaping
thirty-odd years of pent-up rage -- not just
today's grievance. And -- this is the kicker -- I
stopped in mid-sentence screaming and looked at her.
She was observing this wild fit I was having,
absolutely amazed that I too was capable of it -- and
we started to laugh. We concluded that perhaps she
needs to cool it a bit, but perhaps too I should have
had the right to a few more tantrums.
My parents are not to blame for my guilt. Perhaps no
matter what they did, you see, I would have decided
to feel guilty about any angry feelings toward Irene.
So I think all you can do as a parent is to give
permission for the anger to show itself when it's
there. The rest is up to the sibling, and no matter
how you try to take the blame for everything, you
just can't engineer your children's lives and
feelings. I know. I've tried it with my own
normal teen-agers. They won't be engineered. All
we can do is share our experiences in life with our
family members, affirm their rights to love and hate
and fun and anger and frustration and growth and
pain, and then relax. Let the good times roll. And
they will, quite often. If we let them.
Family Stress Factors
The birth of a child with a disability, or the
discovery that a child has a disability, can produce
stress among family members. Stress can also be
caused by a number of ongoing factors, or by special
circumstances. Siblings need an explanation for the
tensions within the family and the cause of the
tensions.
Some families are stressed by the amount of
financial resources required to meet the needs of the
child who has a disability. Some parents may expect
nondisabled siblings to accept the brother or sister
with a disability as "normal." This
expectation can lead to internalized feelings of
anxiety and jealousy which the nondisabled sibling
may be reluctant to voice. The parents, in turn, may
fail to recognize the child's unhappiness and may
deny that a problem exists.
During an interview with the Parent Advocacy
Coalition for Educational Rights Center, Inc.
(PACER), Beth, a young sibling, offered parents some
sage advice:
"I think... I'd want them to understand
that sometimes siblings are going to get jealous of
the extra help and attention that a brother or sister
who's handicapped receives. Parents shouldn't
get mad about the jealousy or make the kids without a
handicap feel too guilty about it if sometimes they
resent the extra attention. Parents have to sit down
and talk to the brothers and sisters who are
nonhandicapped about what the handicap really means.
Kids don't automatically understand it by
themselves" (Binkard, 1987, p.5).
Nondisabled siblings may feel obligated to
compensate for the child with the disability, to make
up for that child's limitations. They may be
acting as a surrogate parent, assuming more
responsibility than would be usual in the care of a
nondisabled sibling. On the other hand, siblings may
help the family by providing their parents with
assistance and support, which they otherwise might
not have, in the care of the child with a disability.
The nondisabled child may experience jealousy because
he or she may be required to do family chores,
whereas, the sibling with a disability is not
required to do them -- despite the fact that the
sibling with a disability may be unable to do them,
or would have great difficulty doing them. The
nondisabled sibling may resent having to integrate
the sibling with a disability into the neighborhood
peer group, and may experience or perceive peer
rejection because of having a sibling with a
disability. Finally, the nondisabled sibling may feel
embarrassment because of a siblinghysical
characteristics or inappropriate behavior.
Essentially, parents, other adult family members, and
professionals should realize that nondisabled
siblings need special understanding, attention,
support and recognition of their unique contributions
to the family system (Powell & Ogle, 1985).
Siblings with disabilities, on the other hand, also
experience stress as family members. These common
stresses include frustration at not being able to
make themselves understood; unhappiness at being left
to play alone; irritation over constant reminders
about everything; withdrawal because of lack of
social skills; low self-esteem; and anger resulting
from an inability to do things as easily and quickly
as their nondisabled brothers and sisters. Through it
all, with understanding and support, there are
usually many positive interactions and normal sibling
give-and-take situations from which each learns and
matures.
When parents have a double standard for disabled and
nondisabled children, conflicts can arise. Even
though the child with the disability, in fact, may
need and receive more parental attention, the amount
given may be perceived as unfair by nondisabled
siblings. Some parents, on the other hand, may tend
to overindulge the normal sibling in an effort to
compensate for a brother or sister with a disability.
The normal rivalry between all siblings may cause the
nondisabled sibling to perceive incorrectly that the
parents favor or love best the sibling with a
disability. Mary expressed the resentment she feels
when her brother is dealt with lightly in comparison
to her punishments:
"Nonhandicapped kids can get pushed aside when
their brothers or sisters have handicaps. Andrew
seems to get help naturally --it's like attention
to his needs is "built into the system."
I'm the bad one, but he can do no wrong. He makes
all the messes, but I get into trouble if I don't
empty the dishwasher." (Binkard, 1987, p.10)
The Importance of Information
Unlike their parents, siblings may have no knowledge
of life without a brother or sister with a disability
(Featherstone, 1980). McKeever (1983) tells us that
siblings generally are poorly informed about
disabilities. Yet siblings' needs for information
may be as great, or greater than those of parents,
because of their identification with their brother or
sister with a disability. It is important to bear in
mind that they have limited life experiences to
assist them in putting a disability into perspective
(Featherstone, 1980). Parents should respect the
nondisabled siblings' need to be recognized as an
individual who has concerns and questions as well as
his or her right to know about the disability.
Nondisabled siblings may require information
throughout their lives in a manner and form
appropriate to their maturity.
For many siblings, anxiety-producing feelings often
are not expressed in day-to-day family interactions
and discussions, and are shared even less at school.
These internalized feelings complicate sibling
relationships, for children need to vent their
emotions. Children should be given an explanation for
their sibling's problems so that they will not
make incorrect assumptions.
Parents and professionals need to be aware that
there may be a gap between the nondisabled
sibling's knowledge and actions. A nondisabled
sibling may be able to rationally explain a
brother's or sister's disability to inquiring
friends or neighbors, but may still exhibit temper
tantrums over the same sibling's actions in the
home.
Most importantly, the need for information and
understanding does not have to be addressed solely by
the parents. A child's disability is a concern
which should be shared by parents, helping
professionals, and society. For example, some
progressive clinics and hospitals have designed
programs that include siblings from the beginning.
These programs offer Family Support Groups which
bring entire families together as a means of sharing
information and mutual support.
It is important for educators to be sensitive to
nondisabled siblings' feelings and needs.
Educators can do much to promote positive sibling
interactions as well as acceptance of disabilities in
all children. During the school years, especially the
early years, teachers can help to promote sibling
awareness and interaction by providing opportunities
for siblings to learn about disabilities. For
example, conducting a "sibling day" or a
sibling workshop can be an excellent way of
introducing siblings to a variety of disabilities. A
"sibling day" can be held on a school day
or on a weekend.
On this day, activities can include a presentation
by "Kids on the Block,"sability simulation
games, sign language instruction, and sharing
positive experiences about having a sibling with a
disability. Siblings who are not disabled might be
interested in seeing and/or participating in some of
the unique activities in which their brothers or
sisters with disabilities participate while in
school. For example, siblings of students with
orthopedic impairments might see a physical therapy
room and go through activities a student might
perform in physical therapy. Siblings of students
with hearing impairments might learn a song or poem
in sign language.
Information puts fears into perspective. In most
instances, simply knowing the facts about a
disability or chronic illness takes away the sting of
embarrassment, as well as uncertainty and fear. While
embarrassment can and does occur in many situations
over the years, knowledge can help one cope.
Ask parent groups, social workers, therapists,
doctors, teachers, or counselors about the
availability of support groups and other sibling
resources in your area.
The Impact On a Sibling With a Disability or Chronic
Illness
Most of the sibling research has focused on the
effects of a child with a disability or chronic
illness on nondisabled siblings. Also important is
the influence of the nondisabled sibling on the child
with a disability or chronic illness. Crnic and
Leconte (1986) report that the nondisabled
sibling's impact upon the child with a disability
may vary across the family's life. While very
little work has been done in this area, researchers
do stress the reciprocity of sibling
relationships.
"I Never Figured You Were Disabled" -- A
Sister's Experience
[In the article which follows, a sibling with a
hearing impairment discusses her experiences as a
sibling with a disability, her interactions with her
brother, and how she has learned to cope.]
"I just don't have a picture of you being
disabled," my younger brother muses as we
discuss growing up. "There was never a
suggestion in our parents' voices about 'your
disabled older sister.'"
I am writing as a sister with two invisible
disabilities: a moderate-to-severe high frequency
loss in both ears, which causes my speech to slur
consonants, and the functional use of my left eye to
restrain my weaker right eye from producing double
vision. These conditions result from my premature
birth at six months.
Although my visual and aural disabilities aren't
severe, they've affected the way I communicate
with my brother and react to him. Since I pick up my
aural information from lipreading with one faulty
eye, I don't trust the information I receive.
This leads to a general mistrust of all my
perceptions and a dependence on others for making
decisions instead of trusting my sense of inner
truth.
My family refuses to think of me as
"handicapped." This encourages me to
challenge myself academically, but this denial
doesn't acknowledge or respect how faulty
communication impairs the first impression which
influences so many interpersonal and business
relationships. Denial colors my brother's one
clear memory of my hearing loss. He remembers,
"The one thing that bothered me the most was
when I had to repeat things. It seemed kind of
selective. If I whispered, "There's ice
cream in the freezer," you'd hear me, but
not if I said, "It's your turn to do the
dishes tonight."
I have other memories. My brother has a great sense
of humor, which he displays in teasing with a deadpan
face. I would often be furious at some
"joke" and would yell at him, completely
missing the vocal inflections that relay the
"humor." And other kids' reactions to
my speech and hearing loss have led me, for many
years, to interpret all teasing, laughter, and
whispers as being directed against me. I come from a
traditional family that gave the younger son much
more independence than the daughter. A greater
protectiveness, beyond gender differences, belied
verbal assurances that I was typical. My mother ran
my Girl Scout troop to keep the other kids from
teasing me. I was in my mid-teens before my parents
trusted me to ride a bike, where my younger brother
wheeled around at ten.
As I grew into my teens, I avoided the anger and
jealousy I felt toward my brother by spending hours
in my room reading. As he was three-and-a-half years
younger, he constantly asked me to play with him,
only to have me turn him away. But as I got used to
his teasing, his wonderful sense of humor disarmed
me. We hid our emotional intensity in endless
arguments about politics and foreign policy.
During our conversation about growing up, my brother
also adds, "When you grow up with somebody, you
don't see anything different. That's the way
they are -- that's my sister." As I come to
terms with the physical and psychological meaning of
my hearing loss, I read acceptance in those words.
In thanks to my brother for our experiences growing
together, I'd like to tell parents, brothers, and
sisters about the strengths my disability has given
me and my family. Because a partial hearing loss
forces me to fill gaps, I have developed an active
sense of nonverbal cues from facial expression, mouth
movement, and shifts in vocal intensity. My
brother's teasing gave me plenty of practice
here! I'm just beginning to trust the truth of
clues.
I am developing a sense for subtle shifts in
people's responses to me that tells me whether I
have picked up on the underside of their speech or
whether I am way off base. What this means in
families is that children with hearing loss are very
acute in discerning if the verbal cue does not match
the underlying nonverbal feeling or behavior. And
it's very easy, if a parent or sibling is
uncomfortable with the accuracy of this discernment,
to say that the child didn't hear correctly.
The "selective" hearing that my brother
mentions is a trait all children have! I have known
kids with keen hearing to go "deaf" when
dishes are mentioned. Also, it's a function of
the extra "sense" that I have had to
develop. People usually lower their voices or use a
different pitch to say censored, pleasurable, or
emotionally-laden phrases. This signals to me that
something important is coming, so I increase my
concentration or alertness.
My family has allowed me to educate them on the
challenges facing a sister with a hearing loss. Some
of these challenges are as follows: It takes an
enormous amount of energy and concentration for me to
listen to conversations, especially in group
situations. I am most comfortable one to one, or in
groups of two to four people. Unless I can see the
person's lips, it's impossible for me to hear
conversations in the dark. I still have to tell my
family not to dim the lights for those cozy living
room discussions. I find it difficult to listen to
anyone with a television on or music playing. All
these things come up within families.
When I am emotionally upset, I find it much harder
to hear. It's necessary to slow down, rephrase
sentences, and give me time to process things. This
is hard to do in a fight or when someone's
crying. Also, I tend to interrupt a lot because
it's difficult to distinguish a phrase from a
full stop.
For all families: Use your differences and your
gifts to imagine the fullest life each family member
can live. There is a difference between being
"disabled" and "having a
disability." If I am "disabled," that
defines who I am. If I "have" a disability,
I have certain choices as to how this physical and
psychological reality limits what I do and how I
live. If other people recognize and respect that
disability, we can work together to create ways to
stretch those limits.
Planning For The Future: Sibling Concerns
Planning for the future raises many important issues
for the family of a child with a disability. Powell
and Ogle (1985) note that the most challenging of
these dilemmas is the care of the adult sibling who
has a disability. Even though nondisabled adult
siblings have lives (and often families) of their
own, they face unusual, additional responsibilities
because of their unique relationship with their
brother or sister with a disability.
The amount of responsibility that adult nondisabled
siblings assume for their adult sibling with a
disability varies with individuals and with
circumstances. It is dictated by a consideration of
family and job responsibilities, personal choice, and
available community support.
Perhaps the most challenging issue families face is,
on the one hand, encouraging and fostering the
independence and self-determination of the person
with a disability and, on the other hand, facing the
reality that, at some level, assistance may be
necessary.
Planning for the Future: An Adult Siblings's
Suggestions
[The following article is written by an adult
sibling who has a close relationship with her sister
who has a disability. In the article she shares some
ideas on how to encourage nondisabled siblings to
take responsibility for adult siblings with a
disability. She also shares some of her frustrations
and anger over the lack of available community
services and housing for adults who have
disabilities.]
When I was about eleven, my older brother and I
developed a scheme to dupe my mom. One of us would
find an excuse to keep her out of the house as long
as possible while the other would "teach"
our little sister how to climb the stairs. Karen has
severe disabilities and Mom was afraid she would
really hurt herself falling down the stairs. My
brother and I were typical kids, we didn't think
about the risks, just that all kids need to get
around by themselves and Karen should learn to climb
stairs. I can't recall how many times Karen tried
and tried (and fortunately I've just about
forgotten how many times she bounced off the bottom
step), but I remember vividly the day my brother
brought Mom to the stairs and said, "Look what
Karen can do!" That was a red letter day for all
members of our family.
Families are expected to care for an infant or young
child who is very dependent, and to provide
experiences that eventually will lead to the
independence of that person. Karen tells me that she
needs to be independent through her actions. I've
seen her work at a task over and over again until she
succeeds, despite the bumps she gets along the way.
Karen is so proud of her every accomplishment. She
wants others to be proud of them, too.
It is essential to avoid seeing the person with a
disability as "the dependent." The sibling
with a disability should be empowered through early
training and attitudes to act as independently as
possible, and to make his or her own choices; as with
all of us, some choices will be mistakes. It is
equally important to avoid making the sibling without
disabilities adopt a parental attitude of
responsibility toward the sibling with disabilities.
In looking back over my childhood, I am grateful to
my mom for encouraging my independence and for being
moderate in her expectations that I care for my
sister. Yet, family members are often interdependent
throughout their lives. The concept of
interdependence is important when considering the
relationships of siblings when one has a disability.
I want to be involved in making crucial family
decisions. If a family member has a disability, it is
important to involve that person, as all others, in
any decision-making.
In my experience, and from discussions with other
siblings of people with disabilities, I have learned
that the best way to foster a positive relationship
among family members and a strong commitment to each
other is to let them choose the levels and intensity
of involvement with each other. I have noted that for
me, these levels have fluctuated over time and during
various circumstances. My relationship with Karen was
strengthened when I came to view my involvement with
her as a collaboration. Collaboration can be
encouraged, but never coerced.
When I was young I used to get pretty good grades,
but I went through a very painful period wondering
when my grades would change and I would "grow
retarded" like my sister. I never talked with
anyone about those fears. Initially, I was afraid to
talk about this because I dreaded the answer. Later,
when I understood what retardation was, I felt guilty
that I had such thoughts. As I grew older, one of my
most pressing concerns was what would happen to Karen
as she became an adult. I was concerned about my
family's ability to provide adequate care for her
and where she would live and work as an adult.
I know it's easier to say that siblings should
be involved in planning for the future care of their
brother or sister with disabilities than it is to
involve them. I also know that the emotional
ramifications of this are sometimes subtle and not
always easily recognized. With respect to financial
planning, moms and dads don't usually sit down
with their kids and say, "OK, folks, I want to
let you know the details of our finances now and our
financial prospects for the future." This topic
is difficult for parents and children alike. But you
must attend to this in some way if family members are
going to be prepared to take over the care of, or
responsibility for, a person with disabilities. I
remember all too well the day I finally got the
courage to ask my mom about her insurance provisions
for my sister. Her answers were anticlimatic compared
to the effort and energy I had spent getting the
courage to ask the question.
The difficulty with planning for the future is that
it forces family members to deal with the
inevitability of death. Sitting down and actually
discussing these details can be very disturbing to
everyone concerned. My mom says she's going to
live forever; that she has too many responsibilities
to ever abandon them. While we both know this
isn't so, no matter how much we wish it were,
it's hard to discuss the inevitable. As an adult,
I now know how difficult it is to come face to face
with one's own mortality.
I strongly recommend that siblings without
disabilities, as well as persons with disabilities,
be involved in planning for the future as soon as
they are old enough to understand the issues. Thus
these financial and future planning discussions will
most likely begin during early adolescence. The
teenage years are a terrible time to have to cope
with mortality. However, I can promise you that
sitting down and getting these issues out into the
open will be much easier in the long run for
everyone.
I've had many sleepless nights, starting when I
was a teenager, working through these problems by
myself, afraid and overwhelmed, before my family
started discussing the issues more openly with me.
When people ask me what my needs are as a sibling of
a person with severe disabilities, I tell them that I
need the commitment from society that every person
has a right to a basic quality of life. I believe
that my sister has a right to live and work in her
community, and a right to lead a life of her own,
with some assistance. For me to be powerful in my
collaboration with Karen in meeting these goals, I
need resources to make this commitment become a
reality.
I'd like to have my sister live up the street,
in a house with other people with disabilities with
whom she can share responsibilities and experiences.
If she lived up the street, she could come over for
dinner, my future children could go to their
aunt's house to visit her, and she could plant
and tend her own garden, something she loves to do.
When I moved to my new neighborhood, I did as I
always do, called about community living and work
options for my sister. I was told that the current
waiting list for group homes was ten years long! I
asked the social services worker what I would do if
tomorrow my sister needed a place to live. The worker
told me that in certain emergencies people could be
moved to the top of the list, and then they had to
wait only three years! When I asked what one would do
in the meantime, the social services worker retorted,
"I guess you'd have to quit work and stay
with her."
Until society can be mobilized to provide a
continuum of services throughout life to citizens
with disabilities -- services that allow a person to
live a quality life with some independence, no matter
what the level of disability -- there will continue
to be tremendous stresses on family members. Families
should not be expected to bear the total burden; they
cannot.
Today, due to pressures from parents and
professionals, we have laws guaranteeing a free,
appropriate, public education to our nation's
children and youth with disabilities. But after the
child has aged out of public school, he or she again
becomes the responsibility of the family. A continuum
of accessible and appropriate services should be
available to people with disabilities from birth to
death. Just as people united for the passage of
special education laws and programs for the
school-aged child, we must unite to work for the
adequate provision of community-based services and
housing for adults with disabilities. Society must
share more of the responsibility with the family for
providing necessary services. I maintain a positive
attitude and believe that this will happen, in time.
I just want to make sure that it happens in time for
Karen and me.
Suggestions for Families
When planning for the future of the sibling with a
disability, you should consider such things as
mobility, social and communication skills, education,
and the individual's own ideas about where to
live and work. Even after careful planning and the
appointment of a guardian or co-guardians, plans
should be made for emergencies. A file should be kept
in a safe place, known to all family members. The
following ideas should be addressed when making
future plans and the information should be included
in this accessible file:
-
1. Develop financial plans for future care. If the
family is considering establishing a trust for the
family member with the disability, it should
consider the incomes of the children in the family,
including the sibling with a disability. Make a
will only with an attorney experienced in devising
wills for those who have an heir with a disability.
Inheritances must be treated with caution. It is
especially important to investigate the continued
eligibility for certain social services if assets
from an estate, pension, or life insurance are left
to the child with a disability.
-
2. Know your state's laws regarding
guardianship and independence. Do not assume that
you as parents will automatically remain your
child's guardian when he or she reaches the age
of majority in your state. Establish whether the
sibling with a disability requires no, partial, or
full guardianship. This information should be in
writing, and, if possible, make contingency plans
in case the first-choice guardian is unable to
assume that role. Be aware of the consequences in
your state of not having a guardian
appointed.
-
3. Nondisabled siblings should know where to access
the needed educational, vocational, and medical
records of the disabled sibling, and be ready to
anticipate his or her changing future needs.
-
4. Families should consider the future health of
the sibling with a disability with respect to
needed services and care. Parents should document
where he or she can receive medical care and the
financial resources and arrangements necessary for
this care.
-
5. Families should gain an understanding of the
legal and eligibility requirements of programs
available to the family member with a disability.
Investigate resources through government programs,
such as Supplemental Security Income (SSI),
Vocational Rehabilitation, Independent Living
Centers, employment services, parent and disability
groups.
-
6. Families should discover the types of community
resources available. The range of services and
resources varies considerably according to place of
residence. Keep abreast of any changes in the
availability of these services. Consider the
sibling's need for long-term care, as well as
for employment and companionship.
-
7. Be aware that, as families grow and develop, the
members within it change. Living with and caring
for a child with a disability is different from
living with and caring for an adult with a
disability. Family members should continually ask
themselves the following questions:
-
What are the needs of the sibling with a
disability?
-
How will these needs change?
-
What can be expected from local support groups
in the community?
-
What is and will be my level of involvement?
-
Is the involvement financially, emotionally and
psychologically realistic for me?
-
How will the responsibility be shared with
other family members?
-
Are my career plans compatible with my
responsibilities for my brother or sister with
a disability?
-
Will my future spouse accept my brother or
sister?
The care of a sibling with a disability or chronic
illness is, in large part, a family affair and a
responsibility that should be shared as evenly as
possible. By planning effectively for the future,
parents can help ease the responsibility and the
feelings of stress that uncertainty about the future
can bring.
Suggestions to Parents
Parents set the tone for sibling interactions and
attitudes by example and by direct communications. In
any family, children should be treated fairly and
valued as individuals, praised as well as
disciplined, and each child should have special times
with parents. Thus, parents should periodically
assess the home situation. Although important goals
for a child with special needs are to develop
feelings of self-worth and self-trust, to become as
independent as possible, to develop trust in others,
and to develop to the fullest of his or her
abilities, these goals are also important to
nondisabled siblings.
To every extent possible, parents should require
their children with disabilities to do as much as
possible for themselves. Families should provide
every opportunity for a normal family life by doing
things together, such as cleaning the house or yard;
or going on family outings to the movies, the
playground, museums, or restaurants. Always, the
child with the disability should be allowed to
participate as much as possible in family chores, and
should have specific chores assigned as do the other
children.
Caregiving responsibilities for the child with a
disability or chronic illness should be shared by all
family members. It is especially important that the
burden for caregiving does not fall onto the
shoulders of an older sibling. If there is an older
sister, there is a tendency in some families to give
her the primary responsibility, or an excessive
amount of it. Today, however, more communities are
providing resources to ease the family's
caregiving burdens. Examples include recreation
activities, respite care, and parent support groups.
Powell and Ogle (1985) present several strategies
suggested by nondisabled siblings themselves for
parents to consider in their interactions with their
nondisabled children. These siblings suggest that
parents should:
-
Be open and honest.
-
Limit the caregiving responsibilities of siblings.
-
Use respite care and other supportive services.
-
Accept the disability.
-
Schedule special time with the nondisabled sibling.
-
Let siblings settle their own differences.
-
Welcome other children and friends into the home.
-
Praise all siblings.
-
Recognize that they are the most important, most
powerful teachers of their children.
-
Listen to siblings.
-
Involve all siblings in family events and
decisions.
-
Require the disabled child to do as much for
himself or herself as possible.
-
Recognize each child's unique qualities and
family contribution.
-
Recognize special stress times for siblings and
plan to minimize negative effects.
-
Use professionals when indicated to help siblings.
-
Teach siblings to interact.
-
Provide opportunities for a normal family life and
normal family activities.
-
Join sibling-related organizations.
Children with special needs, disabilities, or
chronic illness may often need more help and require
more attention and planning from their parents and
others in order to achieve their maximum
independence. Brothers and sisters can give parents
some of the extra help and support they need; the
special relationship of brothers and sisters,
disabled and nondisabled, is often lifelong. This
special and unique bond among siblings can foster and
encourage the positive growth of the entire
family.
"Where is Marianne?"
by Patty McGill Smith, Acting Assistant Secretary
Office of Special Education and Rehabilitative
Services U.S. Department of Education
[The following article was written some years ago by
a mother of seven children, the youngest of whom was
born with a disability. Having worked successfully
for years as a professional parent advocate, she
knows all too well how difficult it is for parents to
juggle all their responsibilities and commitments
when they have a child with a disability. She has put
her thoughts on paper to remind and encourage parents
to set aside time for their children without
disabilities.]
I have a daughter named Marianne. She is 14 years
old and so pretty. Marianne may giggle constantly,
and then sometimes grow very somber. She is a
fantastic young lady of whom I am so proud. She plays
soccer and basketball; she can cook and clean; and
she has sensitivities far beyond her age. Several
trophies line the shelf in her room, and she recently
won a scholarship for high school.
Yes, Marianne can do all kinds of things, and she is
in and out of love every other week. While so much
she does is so normal, there are some other things
about Marianne and her life that are unusual.
Marianne was three years old when her sister, Jane,
was born. The next two years in Marianne's life
are a blur in my memory. Yet, I can recall vividly
what happened to Jane during that time. You see, Jane
was born with a disability. We did not confirm her
disability until she was 14 months old. Those first
14 months were filled with apprehension, concern and
crying, and the fussing and fretting of a demanding
little baby. The next 12 to 14 months, the months
after the diagnosis, were filled with more concerns,
confusion, distress, dismay, and heartbreak.
I wonder where Marianne was during those two and a
half years. What was she thinking during that time
and what was happening to her?
If you don't have a child with a disability in
your family, you can't imagine the impact this
event has upon the entire family. So much of family
life -- the emotion, time, and concern -- is focused
on the child with the disability. After that, parents
are consumed with coping and survival. There is so
much to think about: medical treatment, another
opinion, insurance, money, weariness, and wondering
why it happened to you. There just is never a
convenient time to consider the Mariannes of the
world.
It was difficult or impossible at the time to see
the situations in which the siblings were being
slighted. The slights were not intentional and there
was no lack of love. When Marianne and her older
sister, Patricia, were four and five years old,
respectively, I enrolled them in dance class. This
was one of the first realizations I had as a parent
that they were not getting as much time, energy, and
effort as their little sister with a disability.
After that, I can recall making a conscious effort to
change things. I remember how important it became
that their costumes for the dance recitals were all
that they should be. I remember sitting the children
down and saying, "Jane takes more of Mommy's
time and energy. It isn't that I love her more;
it is just that she needs more. You see, she needs
more car rides for her doctor visits and evaluations,
and more time for her programs. So it ends up that
she gets more of my time." Do you suppose that
Marianne, her sister, and her brothers who were older
were able to accept those kinds of ideas? I don't
know.
I do know that at some point in those early years
things did change. Gradually, all the children became
involved in assisting with Jane's programming. It
was great fun to see members of the family join in to
help. When Jane began to respond to their teachings,
the children taught all the harder. I remember when
my oldest son, Mark, taught Jane to "give me
five." I remember telling teachers that our
household had become a household of speech
therapists. "Watch my lips" must have been
uttered a hundred times a day; everybody was trying
to get Jane to continue to develop her speech
patterns. All these things were done in a light and
joyful way that made them lots of fun. I, however,
look back and wonder if it was too much for them?
"How was Marianne being affected?"
I think about other things, too. I remain amazed by
the enormous difficulty of motivating normal children
to do their best when so much time and effort goes
into the development of the child with the
disability. What a disappointment when the grades of
the siblings come home and they are not all A's.
You know they could all be A's, and yet, how do
you motivate the normal children to work to their
full capacity? I didn't know then, and I
don't know today. Then there was the overemphasis
on the accomplishments of the child with the
disability. Were the accomplishments of the normal
siblings similarly heralded? I don't think so.
Yet, my Marianne and all the rest seemed to be happy
children.
What about the resentment when Jane was learning
tasks? It never seemed as though she kept up. Jane,
as well as the rest of the children, had assigned
tasks around the house and yard. Yet, wasn't it
easier to get the older kids to do a job than it was
to have Jane do it? I think so. What about the time I
gave to teaching the older children skills? Was equal
time given? I don't think so. I remember the
summer we taught Jane to clean her bedroom. It had
been Marianne's job to teach Jane the finer
points of room cleaning, but Marianne didn't want
to do it. Do the normal siblings become resentful?
Does this resentment create other troubles? I think
so. Will Jane ever catch up and be able to fully meet
the family's requirements of its members? I
don't think so.
Is having a child with a disability going to
adversely affect the development of the children who
have no disabilities? Each family needs to consider
this possibility and work to avoid inadvertently
hurting the ones we love.
Have I personally ever gotten an answer to this
question? Indirectly, yes, for despite all the
uncertainties, my children have grown and matured
into adults of whom I am proud. However, Gene, my
oldest son, gave me what was perhaps the most direct
answer I am sure I ever got to an unasked question.
When he left home for college, he wrote me a letter.
In this "lonesome" letter, in which he
expressed his longing for family and friends, he
spoke of all his brothers and sisters. Of Jane he
said, "... and Jane, well Jane is probably the
greatest blessing to us in the world."
Did he mean that he was glad that she was born with
a disability? Quite the contrary. He was saying that
Jane and her needs had brought us together as a
family. It was true; Jane had been a focal point
around which we all rallied. We worked as individuals
and as a family to help her. Jane had become a total
family effort.
Over the years, as a family, and as individuals we
have had many successes and some setbacks. Yet, we
know none of us has to be alone. We know how to pull
together as a family, to love, support, and share --
something we learned how to do a long time ago with
Jane.
A Final Word
It is important for parents, siblings, and
professionals to utilize the positive resources
discussed here in order to cope with a variety of
special circumstances, and to adapt them to meet
individual needs as they change. Together, family
members, as well as professionals, must strive to
accent the "abilities" of disabilities, not
only for a brother or sister with a disability, but
for the entire family.
Bibliographic Note:
You can obtain many of the documents listed below
through your local public library. Whenever possible,
we have included the publisher's address or some
other source in case the publication is not available
in your area. The organizations listed are only a few
of the many that provide various services and
information about siblings. Additional support is
also available from state and local parent groups, as
well as from state and local affiliates of major
disability organizations. Please note that these
addresses are subject to change without prior notice.
If you experience difficulty in locating these
documents or organizations, or if you would like
additional assistance, please contact NICHCY, by
writing to PO Box 1492, Washington, DC 20013, or by
calling 1-800-695-0285 (V/TT) or (202) 884-8200
(V/TT).
If you know of a group providing support services
for siblings and their families in your area, please
send this information to NICHCY for our resource
collection. We will appreciate this information and
will share it with other families and professionals
who request it.
REFERENCES
Binkard, B. (1987). Brothers & sisters talk with
PACER. Minneapolis: PACER Center. (Available from
PACER Center, Inc., 4826 Chicago Ave., South,
Minneapolis, MN 55417.)
Crnic, K. A., & Leconte, J. M. (1986).
Understanding sibling needs and influences. In R. R.
Fewell & P. F. Vadasy (Eds.), Families of
handicapped children: Needs and supports across the
life span (pp. 75-98). Austin: Pro-Ed. (This book is
no longer in print but may be available through your
public library.)
Dougan, T. (1983). Let the good times roll. In T.
Dougan, L. Isbell, & P. Vyas (Eds.), We have been
there (pp. 119-122). Nashville: Abingdon Press.
Featherstone, H. (1980). A difference in the family:
Life with a disabled child. New York: Basic Books,
Inc. (Available from Special Needs Project, 3463
State Street, Suite 282, Santa Barbara, CA 93105.
Telephone: (805) 683-9633 or 1-800-333-6867.)
McHale, S. M., & Gamble, W. C. (1987). Sibling
relationships and adjustment of children with
disabled brothers and sisters. In F. Fuchs Schachter
& R. K. Stine (Eds.), Practical concerns about
siblings: Bridging the research-practice gap (pp.
131-158). New York: Haworth Press. (Available from
Haworth Press, Inc., 10 Alice Street, Binghamton, NY
13904-1580. Telephone: 1-800-342-9678.)
McKeever, P. (1983). Siblings of chronically ill
children: A literature review with implications for
research and practice. American Journal of
Orthopsychiatry, 53(2), 209-218.
Meyer, D. J., Vadasy P. F., & Fewell, R. R.
(1985). Living with a brother or sister with special
needs : A book for sibs. Seattle: University of
Washington Press. (Available from University of
Washington Press, P.O. Box 50096, Seattle, WA
98145-5095. Telephone: 1-800-441-4115.)
Powell, T. H., & Ogle, P. A. (1985). Brothers
& sisters: A special part of exceptional
families. Baltimore: Paul H. Brookes Publishing. (A
second edition of this book is available from Paul H.
Brookes Publishing Co., P.O. Box 10624, Baltimore, MD
21204. Telephone: 1-800-638-3775.)
Skrtic, T. M., Summers, J. A., Brotherson, M. J.,
& Turnbull, A. P. (1984). Severely handicapped
children and their brothers and sisters. In J.
Blancher (Ed.), Severely handicapped young children
and their families: Research in review. New York:
Academic Press. (Available from Academic Press, 6277
Sea Harbor Drive, Orlando, FL 32887. Telephone:
1-800-545- 2522.)
BIBLIOGRAPHY
(Updated 8/94)
General Interest:
Azarnoff, P. (1983). Health, illness, and
disability: A guide to books for children and young
adults. New York: R.R. Bowker. (Available from R.R.
Bowker, c/o Reed Reference Publishing, 121 Chanlon
Road, New Providence, NJ 07974. Telephone: 1-800-
521-8110.)
Corlin, M., Laughlin, J., & Saniga, R. (1991).
Understanding abilities, disabilities, and
capabilities: A guide to children's literature.
Englewood, CO: Libraries Unlimited. (Available from
Libraries Unlimited, P.O. Box 6633, Englewood, CO
80155-6633. Telephone: 1-800-237-6124.)
Emmett, M. (1989). I'm the big sister now.
Niles, IL: Albert Whitman. (About a sibling of a
child with cerebral palsy, suitable for pre-K through
early elementary. Available from Albert Whitman, 6340
Oakton Street, Morton Grove, IL 60053. Telephone:
1-800-255- 7675.)
Epilepsy Foundation of America. (1992). Brothers and
sisters: A guide for families of children with
epilepsy. Landover, MD: Author. (Available from the
Epilepsy Foundation of America, 4351 Garden City
Drive, Landover, MD 20785. Telephone:
1-800-332-1000.)
Friedman, J.B., Mullins, J.B., & Sukiennik, A.W.
(1985). Accept me as I am: Best books of juvenile
nonfiction on impairment and disabilities. New York:
R.R. Bowker. (Available from R.R. Bowker, at address
listed above.)
Hecker, H. (1994). Children's disability
bookstore catalog. Vancouver, WA: Twin Peaks.
(Available from Twin Peaks Press, P.O. Box 129,
Vancouver, WA 98666-0129. Telephone: (206) 694-2462.)
Lobato, D.J. (1990). Brothers, sisters, and special
needs: Information and activities for helping young
siblings of children with chronic illness and
developmental disabilities. Baltimore, MD: Paul H.
Brookes Publishing. (Available from Paul H. Brookes
Publishing Co., P.O. Box 10624, Baltimore, MD 21204.
Telephone: 1-800-638-3775.)
McCaffrey, F.D., & Fish, T. (1989). Profiles of
the other child: A sibling guide for parents.
Columbus, OH: Nisonger Center. (Available from the
Nisonger Center, Publications Office, McCampbell
Hall, Room 434, 1581 Dodd Drive, Columbus, OH 43210.
Telephone: (614) 292-8365.)
Meyer, D. J., Vadasy, P. F., & Fewell, R. R.
(1985). Living with a brother or sister with special
needs: A book for sibs. Seattle: University of
Washington Press. (Available from University of
Washington Press, P.O. Box 50096, Seattle, WA
98145-5096. Telephone: 1-800-441-4115.)
Muldoon, K.M. (1989). Princess pooh. Niles, IL:
Albert Whitman. (About a young girl and her sister
who uses a wheelchair, suitable for pre-K through
grade 3. See Albert Whitman address above.)
Powell, T., & Gallagher, P.A. (1993). Brothers
and sisters: A special part of exceptional families
(2nd ed.). Baltimore, MD: Paul H. Brookes. (See
address above.)
Shulman, S. (1988). The family of the severely
handicapped child: The sibling perspective. Journal
of Family Therapy, 10(2), 125-134.
Thompson, M. (1992). My brother Matthew. Rockville,
MD: Woodbine House. (Intended for siblings, grades
K-5. Available from Woodbine House, 6510 Bells Mill
Road, Bethesda, MD 20817. Telephone: 1-800-843-7323;
(301) 897-3570.)
Magazines and Newsletters:
The Bond. A quarterly newsletter intended for
siblings and adult children of individuals with
mental illness. (For subscriptions, contact Siblings
and Adult Children Network, National Alliance for the
Mentally Ill, 200 N. Glebe Road, Suite 1015,
Arlington, VA 222031. Telephone: (703) 524-7600.)
The Exceptional Parent. A magazine for parents of
children with disabilities published twelve times a
year. (Write: Psy-Ed Corporation, P.O. Box 3000,
Denville, NJ 07834. Telephone: 1-800-562-1973.)
NASP Newsletter. A newsletter published for service
providers. (Available from National Association of
Sibling Programs, Sibling Support Project,
Children's Hospital and Medical Center, P.O. Box
5371, CL-09, Seattle, WA 98105-0371. Telephone: (206)
368-4911.)
Sibling Information Network Newsletter. A newsletter
for siblings, published quarterly. (Write: Sibling
Information Network, A.J. Pappanikou Center, 62
Washington Street, Middletown, CT 06475. Telephone:
(203) 344-7500.)
ORGANIZATIONS
The Sibling Information Network- A.J. Pappanikou
Center, 62 Washington Street, Middletown, CT 06475.
Telephone: (203) 344-7500. Siblings for Significant
Change- 105 East 22nd St., New York, NY 10010.
Telephone (212) 420-0430.
Parent Advocacy Coalition for Educational Rights
(PACER) Center- PACER, is a Center of "parents
helping parents". PACER's programs help
parents and children becomed informed and
participating members in the life of a child with
disabilities. In addition to a resource listing of
publications and a newsletter, PACER offers many
workshops. Write: PACER Center, Inc., 4826 Chicago
Ave. South, Minneapolis, MN 55417. Telephone: (612)
827-2966.
Siblings of Disabled Children- A program of Parents
Helping Parents, offers two groups, one for ages
8-12, and one for ages 13-17. The objective is to
give siblings special attention relating to their
needs around being a member of an exceptional family.
Their newsletter is called, Sibling Squabble. Write:
Parents Helping Parents, Inc., 3041 Olcott, Santa
Clara, CA 95054-3222. Telephone (408) 288-5010.
Sibling Support Project,
NEWS DIGEST is published and disseminated three
times a year. In addition, NICHCY disseminates other
materials, and responds to individual inquiries.
NICHCY materials and information services are
provided free of charge. For further information and
assistance, or to receive a NICHCY Publications List,
contact NICHCY, P.O. Box 1492, Washington, DC 20013,
or call 1-800-695-0285.
NICHCY would like to thank our Project Officer, Dr.
Sara Conlon, at the Office of Special Education
Programs, Office of Special Education and
Rehabilitative Services, U.S. Department of
Education, for her time in reading and reviewing this
document. We also would like to thank Betsy Trombino,
Florence Poyadue, Paula Goldberg, Dr. Patricia Place,
Dr. Peggy Ahrenhold Ogle, and Dr. Patricia F. Vadasy
for their valuable comments and suggestions. Finally,
we would like to express our appreciation to Beverly
Long, and Apple Computers, Inc., for their generous
donation to the Project of the Macintosh SE and
LaserWriter II NT used in the production of this
document. PROJECT STAFF
Project Director: Carol Valdivieso
Acting Deputy Director: Suzanne Ripley
Editor: Lana Ambler
CONTRIBUTING AUTHORS: Richard Horne, Patricia
Schmieg, Patricia Place, Patricia McGill Smith,
Jeanne Prickett, and Carol Valdivieso
This information is copyright free, unless otherwise
indicated. Readers are encouraged to copy and share
it, but please credit the National Information Center
for Children and Youth with Disabilities (NICHCY).
Please share your ideas and feedback with our staff
by writing to the Editor.
This document is made possible through Cooperative
Agreement #H030A30003 between the Academy for
Educational Development (AED) and the Office of
Special Education Programs, U.S. Department of
Education. The contents of this document do not
necessarily reflect the views or policies of the
Department of Education, nor does mention of trade
names, commercial products, or organizations imply
endorsement by the U.S. Government.
The Academy for Educational Development, founded in
1961, is an independent, nonprofit service
organization committed to addressing human
development needs in the United States and throughout
the world. In partnership with its clients, the
Academy seeks to meet today's social, economic,
and environmental challenges through education and
human resource development; to apply state-of-the-art
education, training, research, technology,
management, behavioral analysis, and social marketing
techniques to solve problems; and to improve
knowledge and skills throughout the world as the most
effective means for stimulating growth, reducing
poverty, and promoting democratic and humanitarian
ideals.
This document is copyright free. Readers are
encouraged to copy and share it with others. We only
ask that you credit the material as a publication of
the National Information Center for Children and
Youth with Disabilities (NICHCY).
A publication of...
NICHCY
National Information Center for Children and Youth
with Disabilities
P.O. Box 1492
Washington, DC 20013
1-800-695-0285 (Voice/TT)
(202) 884-8200 (Voice/TT)
E-mail:
nichcy@aed.org
Url: http://www.nichcy.orghttp://www.nichcy.org
Copyright © 2007 ASGC. All rights reserved. Autism Society of Greater Cleveland P.O. Box 41066, Brecksville, Ohio 44141 (216) 556-4937
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