Support for Siblings

There is no doubt about it. Having a child with special needs changes your
family. It is often pointed out that most parents with children who are Deaf or
Hard of Hearing have typical hearing themselves. What is usually not mentioned
is that most children with special needs have typically developing brothers and
sisters. Brothers and sisters are too important to ignore, for these reasons:
➢ Brothers and sisters will be in the lives of family members with special
needs longer than anyone. Brothers and sisters will be there after parents
are gone and special education services are a distant memory.
➢ Throughout their lives, brothers and sisters share many of the concerns
that parents of children with special needs experience, including
isolation, a need for information, guilt, concerns about the future, and
caregiving demands. Brothers and sisters also face issues that are
uniquely theirs including resentment, peer issues, embarrassment, and
pressure to achieve. Even the most family-friendly providers often
overlook brothers and sisters. Brothers and sisters are left in the waiting
rooms of hospitals and clinics – literally and symbolically. True “familycentered”
care and services should actively include siblings.
There is no doubt that having a child with a disability adds extra stress to
parenting. It also adds extra stress to being a sibling. It is important to be aware
of the stress involved and watch the siblings to make sure they are also being
the best they can be.
The Sibling Support Project (https://www.siblingsupport.org/) facilitated a
discussion on SibNet, the listserv for adult siblings of people with special needs,
regarding the considerations that siblings want from parents, other family
members, and service providers. Below are themes discussed by SibNet
members and recommendations from the Sibling Support Project.

01. The Right to One’s Own Life
The basic right of siblings to their own lives must always be remembered.
Parents and service providers should not make assumptions about
responsibilities typically developing siblings may assume without a frank and
open discussion.
02. Acknowledging Siblings’ Concerns
Like parents, brothers and sisters will experience a wide array of emotions
regarding the impact of their sibling’s special needs. Siblings may worry about
how the child with hearing loss will manage in school. What is my responsibility?
What about when playing board games? How many extra tries does he get? The
answer should be that every child has the same number of chances – the child
with hearing loss has to learn to play by the same rules as everyone else. But if
he does not understand what he was supposed to do, the typical sibling should
try and help him figure it out.
03. Expectations for Typically Developing Siblings
Some typically developing brothers and sisters react to their sibling’s special
needs by setting unrealistically high expectations for themselves – and some
feel they must somehow compensate for their siblings’ special needs.
Siblings should not feel they have to sacrifice for the child with hearing loss. It is
tempting to tell a child with typical hearing how lucky he is. He did not choose
this and should not be made to feel bad when he wants extra attention.
Sometimes siblings feel as if they cannot get their parents’ attention, and they
may wonder what they need to do to get parents to focus on them. They may
question if they are allowed to feel jealous, angry, or annoyed at their sibling.
They may feel they cannot ask for things they want or need because the child
with hearing loss needs so much. Parents can help their typically-developing
children by conveying clear expectations and unconditional support.
04. Expect Typical Behaviour From Typically Developing Siblings
Although difficult for parents to watch, teasing, name-calling, arguing and other
forms of conflict are common among most brothers and sisters. Much of this
conflict can be a beneficial part of normal social development. A child with
Down syndrome who grows up with siblings with whom he sometimes fights

will likely be better prepared to face life in the community as an adult than a
child with Down syndrome who grows up as an only child. However, when
conflict arises, the message sent to many brothers and sisters is, “Leave your
sibling alone. You are bigger, you are stronger, you should know better. It is
your job to compromise.” Typically developing siblings deserve a life where
they, like other children, sometimes misbehave, get angry, and fight with their
siblings.
Siblings may feel irritated by questions such as: “Why does your brother speak
so funny?” “What are those things he is wearing?” “What is wrong with him – is
he retarded?” Such comments can be hurtful, and siblings need to know what to
say in response. Consider roleplaying to practice the right behaviour. There is
nothing wrong in telling someone the truth and educating that person about
the child’s hearing loss and what it takes to help them.
05. Expectations for the Family Member with Special Needs
Parents can help siblings now by helping their children who have special needs
acquire skills that will allow them to be as independent as possible as adults. To
the extent possible, parents should have the same expectations for the child
with special needs regarding chores and personal responsibility as they do for
their typically developing children.
06. The Right to a Safe Environment
Some siblings live with brothers and sisters who have challenging behaviours.
Other siblings assume responsibilities that go beyond their age level. This can
place all parties involved in a vulnerable situation. Siblings deserve to have their
own personal safety given as much importance as the family member who has
special needs.
07. Opportunities to Meet Peers
The same common-sense support and validation that parents get from formal
and informal Parent-to-Parent programs would allow brothers and sisters – like
parents – to know that they are not alone with their unique joys and concerns.

08. Opportunities to Obtain Information
Throughout their lives, brothers and sisters have an ever-changing need for
information about their sibling’s special needs, treatment and implications.
Parents and service providers have an obligation to proactively provide siblings
with helpful information appropriate for their age and reading level.
Parents and professionals working with families need to talk directly and
honestly with siblings. We need to explain what hearing loss is, at the level the
child understands, and answer questions honestly. Teach the sibling how to
monitor technology and let them help. Try and explain why it is necessary for
the child with hearing loss to use technology and why he needs to go to
therapy. A sibling may be a good communication partner and may be able to
assist in therapy. Since parents should be part of the therapy session, therapy
time is not a good time for the parent to spend with the sibling alone, but the
sibling could attend therapy and be part of a communication triad. Not every
sibling will be good at this but many will.
09. Sibling’s Concerns about the Future
Early in life, many brothers and sisters worry about what obligations they will
have toward their sibling in the days to come. When brothers and sisters are
“brought into the loop” and given the message early that they have their
parents’ blessing to pursue their dreams, their future involvement with their
sibling will be a choice instead of an obligation. This includes having a say in
whether and how they will be involved in the lives of their siblings who have
special needs as adults, and the level, type, and duration of involvement.
10. Including Both Sons and Daughters
Just as daughters are usually the family members who care for aging parents,
adult sisters are usually the family members who look after the family member
with special needs when parents no longer can. Serious exploration of sharing
responsibilities among siblings – including brothers – should be considered.
11. Communication
While good communication between parents and children is always important,
it is especially important in families where there is a child who has special needs.
Books, such as How to Talk So Kids Will Listen and Listen So Kids Will Talk and

Siblings Without Rivalry (both by Adele Faber and Elaine Mazlich) provide
helpful tips on communicating with children.
12. One-on-One Time with Parents
Siblings may feel that they are not getting their fair share of parent time. They
are right; it is not fair. However, it is something that cannot be avoided. It
is probably impossible to find equal time for each child, but each child in the
family should have special time – time they can spend with parents doing
something they want to do.
13. Celebrate Every Child’s Achievements and Milestones
Over the years, the Sibling Project has heard from siblings whose parents did
not attend their high school graduation – even when their children were
valedictorians – because the parents were unable to leave their child with special
needs. More than one sibling has had wedding plans that were dictated by the
needs of their sibling who had a special need. One child’s special needs should
not overshadow another’s achievements and milestones. Families who seek
respite resources, strive for flexibility, and seek creative solutions can help
assure that the accomplishments of all family members are celebrated.
14. Parents’ Perspective is More Important than the Actual Special Need
Parents would be wise to remember that their interpretation of their child’s
special needs will be a greater influence on the adaptation of their typically
developing sibling than the actual disability itself. When parents seek support,
information, and respite for themselves, they model resilience and healthy
attitudes and behaviours for their typically developing children.
15. Include Siblings in the Definition of “Family”
Many educational, health care, and social service agencies profess a desire to
offer family-centered services but continue to overlook the family members who
will have the longest-lasting relationship with the person who has special needs
– the sisters and brothers. When brothers and sisters receive the considerations
and services they deserve, providers can claim to offer “family-centered” instead
of “parent-centered” services.

16. Actively Reach Out to Brothers and Sisters
Parents and agency personnel should consider inviting (but not requiring)
brothers and sisters to attend informational, education, and transition planning
meetings, and clinic visits. Siblings frequently have legitimate questions that can
be answered by service providers. Brothers and sisters also have informed
opinions and perspectives and can make positive contributions to the child’s
team.
The Sibling Support Project, believing that disabilities, illness, and mental health
issues affect the lives of all family members, seeks to increase the peer support
and information opportunities for brothers and sisters of people with special needs
and to increase parents’ and providers’ understanding of sibling issues. For more
information, see their website at https://www.siblingsupport.org/.
Adapted From:
-Hearing Health and Technology Matters, Providing Support to Siblings of
Children with Hearing Loss
-Professional Audiological Services, Helping Siblings Adjust to Hearing Loss
-Wisconsin’s Babies & Hearing: An Interactive Notebook for Families With a
Young Child Who Is Deaf or Hard of Hearing
Additional Resources
Hands & Voices: Communication Considerations A-Z: Siblings
http://www.handsandvoices.org/comcon/articles/pdfs/siblings.pdf
NCHAM E-book: A Resource Guide for Early Hearing Detection and Intervention:
Chapter 20: Secrets for Deaf and Hearing Sibling Success: Giving Them an Early
Start for a Lifetime Together
http://www.infanthearing.org/ehdi-ebook/2015_ebook/20-
Chapter20Secrets2015.pdf
Ten Ways to Give Attention to a Sibling of a Child with Special Needs
http://www.friendshipcircle.org/blog/2013/11/04/10-ways-to-give-attention-toa-
sibling-of-a-child-with-special-needs/