8 Voice, Winter 2008.

Down Syndrome Victoria Members Journal

Getting along together
Brothers and sisters
Most people with Down syndrome have brothers and
sisters. Understandably, signicant resources are spent
on addressing the needs of children and adults with
Down syndrome. However, research and anecdotal
evidence supports the view that illness and disability
affects the lives of all family members. The largest ever
survey into the health and wellbeing of Australian carers,
The Wellbeing of Australians: Carer Health and Wellbeing
found the presence of a person in the household who
requires care severely compromises the wellbeing of
all family members, whether they have primary carer
responsibility or not.
It is also recognised that siblings of children with a
disability often grow up in a situation of considerable
stress, without the cognitive and emotional maturity
to understand the mix of feelings they experience.
On the one hand, a child may feel loving and protective
toward their brother or sister. At the same time, they
may feel resentment, embarrassment, guilt, sorrow and
fear. Without the cognitive skills and emotional maturity
to understand and deal with those feelings, a childs
self esteem can suffer. If children do not have access to
support, then anger and guilt can turn inward and lead
to shame and a sense of worthlessness or longer-term
physical, emotional and psychological problems.
Why we should support siblings of all ages
Those siblings who have access to support early are less
likely to have mental health problems, and more likely
to reach their full potential. Supported siblings are also
more likely to contribute to the wellbeing of the person
with a disability. After all, siblings will likely be in the
life of the person with a disability longer than anyone.
Why would we not support them? Support is about
strengthening relationships across the lifespan. Sibling
support enables the whole family to be stronger and
more able to support each other. However, the needs
of siblings are still largely overlooked.
Adult sibling concerns
As mentioned, young siblings can have a mix of feelings.
They might feel love and pride but also resentment,
embarrassment, guilt, sorrow and fear. It is important
to reect on how childhood issues might be reected
in adult life.
While writing the book Siblings, the author spoke
to a brother of a woman with Down syndrome.
It was hoped he might contribute to the book, as other
siblings had done. However over time it became clear
that he could not. He admitted that it had all become
too difcult for him and he had, in fact, moved interstate
to get away from his family. There was considerable
emotion involved in this decision. As a result, he was
missing a relationship with his sister but, perhaps more
importantly, his sister was missing out on a relationship
with him. It is easy to wonder about what had led to such
family breakdown. If he had been given more support as
a child would he have been more able to remain in touch
with his family and contribute to the social network of
his sister with Down syndrome?
What would have helped reecting back
Siblings have identied the following as things that would
have helped them in their role as a brother or sister:
Cootact .|t| ot|o s|b||ozs to 'oo. t|ov .oo oot
alone and that others felt the same;
Soot||oz to oao o a s|b||oz oosooct|vo ost
books are from the parent perspective;
|aoots |av|oz zoato uooostaoo|oz o c|||ooo
needing to express all feelings;
|ot so uc| osooos|b|||tv o caoz|v|oz. aoo
Suooot to ooa| .|t| utuo coocoos bot| o
themselves and their brother or sister.
Adult sibling needs the present
It is clear that the needs of siblings can vary enormously, but
many siblings need both emotional and practical support.
Unlike parents, many adult siblings have not had the
opportunity to meet with other siblings and share
experiences, yet emotional support is crucial. If there
are longer term mental health issues such as depression
by Kate Strohm
Siblings Australia Inc
www.siblingsaustralia.org.au
We know that having a family member with Down syndrome can make a signicant positive impact on our lives, fostering
closer family relationships and encouraging greater compassion and understanding of others. However, most families also
struggle with the challenges that Down syndrome can present, and parents often have concerns about meeting the needs
of children with a disability and other family members. Other concerns often include the lack of integration into everyday
family life and the wider community.
Voice, Winter 2008. Down Syndrome Victoria Members Journal 9
Getting along together
or anxiety, they need support to work through and
understand the legacy and develop strength and self
acceptance. Many siblings have taken mainly positive
experiences from their childhood, and certainly many
siblings remain lovingly involved with their brother or
sister with a disability. However, they can still benet from
greater understanding of the different reactions they
have brought from childhood, and the opportunity to
share their stories. Even if siblings are happy to be in the
lives of their brother or sister they can still struggle with
their role and how to incorporate it into other aspects
of their lives. Adult siblings from around the world have
expressed the same issues, via internet forums and
books, and talked about the value of having contact with
other siblings. As one Italian brother (31) of a man (33)
with Down syndrome said: I joined our group (a support
group based in Rome) and since then Ive learnt that
the best way to feel better as a sibling is to share ones
experience with people who live the same situation.
Some siblings have sought counselling and for some it
has been a very useful exercise. For others it has been
frustrating to nd the lack of understanding of sibling
issues amongst the counselling profession.
Adult siblings might also need practical support in their
role as a carer (primary or secondary) for the person
with a disability. Some feel comfortable taking over more
responsibility as their parents age. Others are given the
responsibility, with little choice, when parents die, often
without any resources to cope with the decisions and
actions that need to occur. Siblings might need support
to deal with a mix of issues including accommodation,
nancial planning, and medical care for their brother or
sister. If siblings are not in daily contact with the family,
they may not be aware of their brother or sisters
support needs, or understand community services.
Of course it is much better if planning for the future
can start much earlier, with all members of the family
involved in the discussions, but it is a difcult subject
and one that many parents and siblings avoid.
The Wellbeing of Australians: Carer Health and Wellbeing http://www.carers-sa.asn.
au/healthandwellbeing.html
Lamorey, Suzanne. (1999). Parentication of Siblings of Children with Disability or
Chronic Disease. In Nancy D. Chase (Ed.), Burdened Children: Theor y, Research and
Treatment of Parentication. Thousand Oaks, California: Sage Publications
Strohm, K. E., (2002) Siblings: Brothers and Sisters of Children with Special Needs.
Wakeeld Press: Adelaide
Reproduced with permission from Friends
Dont Count Chromosomes, Down Syndrome
Association of Queensland Inc 2002
T||o' about vou sc|oo| cu|tuo ooos |t oo|v
tolerate or does it welcome the presence of the
student with Down syndrome?
Suooot coostaot o|vs|ca| oosooco c|assos/
recreation/leisure.
|oouco ba|os t|at |ossoo t|o c|aoco o cootact.
segregated programs
aides
even formal buddies can isolate students.
Suooot o|at|oos||os |o 'oa| ||o' at|o t|ao |o
special programs.
|ov|oo ooootuo|t|os o obos o t|o sc|oo|
community to discuss disability. Remove the unknown.
Allow time and space to work through discomforts.
|ov|oo ooootuo|t|os o obos o t|o sc|oo|
community to learn about the students support needs,
including how the student communicates.
Lovo|oo t|o caoac|tv o t|o sc|oo| couo|tv to
include a student with Down syndrome. This requires
leadership and facilitation.
T||o' about .|o .||| |o|t|ato/ac|||tato/suooot o|at|oos||os.
Suooot oao|ozu| soc|a| oat|c|oat|oo oot |ust oco|vo
of tutoring/help opportunities for authentic contributions.
|ocozo|so t|at |uoc| boa's .|t| t|o| |ac' o stuctuo
can be difcult times for a student with Down
syndrome but
/|so t|at suooot ooos oot a|.avs oao ozao|soo
activities. Also provide space and opportunities for
students to nd their own connections.
|ocozo|so aoo uso cooo |otoosts o a|| stuooots.
T||o' about t|o '|azo' o stuooots. Lo ot|os soo
them as fellow learners? Do they have an authentic
involvement in school programs?
'|o|oao' soo o vou soc|a||sat|oo aouoo |ooos||o
how you dene it, what expectations you have of it.
Re-think the nature of how students can be together.
To promote friendship
at a school level