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Brothers and Sisters of Children with Disabilities

Siblings of children with developmental disabilities are important in the lives of their brothers or sisters who have special needs. They may be more important as siblings than parents or other family members, because as our children grow up, no one knows them as well or will live in their lives as long as a brother or sister.

Considering the challenges and responsibilities of siblings have been the focus of advocates like Don Meyer and Patricia Vadasy for over a quarter of a century, but local Sibshops and sibling support events continue to be rare enough so that most children have never participated in one.

No one challenges a child with special needs to be more creative, responsive, ambitious or adventurous, and no one else's opinion holds as much weight. It's likely that no one challenges a mainstream sibling like a brother or sister who has a disability. And of course, no one else knows how embarrassing, funny or wonderful their shared parents or extended family can be.

Many children growing up with a sibling who has a medical condition or developmental disability have specific concerns and interests that are sometimes overlooked when a family is in crisis over a diagnosis, or overscheduled in an attempt to meet the needs of the child with special needs. They may take on or be expected to accept too much responsibility for the mental health of the whole family, dealing with bullies or inappropriate demands of staff at school, and conflicting expectations from parents or grandparents. They may take on assumptions about their future that create extra challenges during their teen years.

We sometimes overlook our other children when sharing information about a new diagnosis or treatment, or we may not be sure how much of the information that they can interpret or we can explain, using age appropriate language. Many brothers and sisters believe that they will be responsible for their sibling with a disability in adulthood, and an occasional few words about programs for adults in supported living arrangements, supported employment, recreation and other activities can be reassuring.

Our children interact with one another on many levels at home. Their squabbles and conflicts must be mediated; cooperation and congeniality encouraged. Birth order helps determine some aspects of sibling relationships, but active parenting to demonstrate fairness, plus showing interest and delight in each child, can help to alleviate tensions that develop in everyday life, and especially stressful situations.

Fairness means more than flipping a coin to see who goes first, and giving the coin to the child who loses the toss. We must remember to recognize that every child is vulnerable to feelings of failure, inadequacy, loneliness and competitiveness. Each of our children is capable of being an amazing person who achieves remarkable goals, but we love them for who they are when they are struggling as well as for what they do with their talents and abilities.

Family participation in summer picnics or holiday events where siblings can observe older children with the same disability as well as other brothers and sisters their age can help their understanding of the diversity of individuals with the same diagnosis and be as reassuring to siblings as it is to parents. Communication is important after these events so that children who have the opposite reaction can express their observations and parents can reassure them.

There are programs available through advocacy organizations that specifically address the needs and concerns of brothers and sisters growing up with a sibling with special needs. Often the focus is on social activity, cooking up a snack together, and games, with a short discussion of some topic in common, or an occasional adult speaker who has a specific diagnosis and wants to share his or her lifestyle and relationships with the group. Sibshops are the model for excellent programs offered across the country and around the world.

Brothers and sisters, along with their friends and spouses, will have longer relationships with a disabled child than parents, grandparents, aunts and uncles. While it is important that parents and other adults in the family find time to spend with each child independently of other siblings, it is also up to us to teach them how to appreciate and enjoy one another, too.

It is important to remember that relationships between siblings are complex, distressing, and inspiring whether one of them has a diagnosis or not. Perhaps nowhere else is it so obvious that children with special needs are more like their mainstream peers than they are different than when they are at home, in the middle of a sibling spat.

Sisters and brothers of children with disabilities grow up to be energetic and effective advocates, and their siblings with special needs often contribute immeasurable support and encouragement for their mainstream kin. Whether they choose or are able to have close relationships as adults or not, they should have had every opportunity to enjoy one another and to coexist peacefully as they grow up.

Mainstream resources and support for maintaining and improving sibling relationships have a wealth of information that can benefit families of children with special needs, too. Staying integrated in the mainstream of our communities means that not only can we share our experiences with families who have only typically developing children, but they can share theirs with us. Some of the greatest obstacles we face are the same that challenge every parent. Our mainstream children and our children with special needs deserve to grow up with respect and consideration for their relationships with one another, and protection from the consequences of natural or exceptional sibling rivalry.

Browse at your local bookstore, public library or online retailer for books like The Sibling Slam Book or Thicker Than Water: Essays by Adult Siblings of People with Disabilities by Don Meyer and Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters by Brian Skotko and Susan P. Levine

Disability Field Notes Sibling Resources
http://disabilityfieldnotes.com/2014/06/22/sibling-resources/

Am I Not My Brother's Keeper?
Siblings are not considered family under the Family and Medical Leave Act, the major law that protects employees who take time off work to care for sick relatives.
http://www.theatlantic.com/business/archive/2014/11/am-i-not-my-brothers-keeper/382354/?single_page=true

Video games, Down's syndrome and my brother – a personal story
- Games writer Edwin Evans-Thirlwell on his brother, Euan
http://bit.ly/1fHEczr
http://www.theguardian.com/technology/gamesblog/2014/feb/01/video-games-downs-syndrome

Partners in Crime
http://mamalode.com/story/detail/partners-in-crime

The Sibling Support Project
http://www.siblingsupport.org

Bully in the next bedroom - are we in denial about sibling aggression?
http://www.bbc.co.uk/news/magazine-24639063

6 Ways to ensure siblings aren’t overshadowed
http://www.sheknows.com/parenting/articles/985255/avoid-overshadowing-siblings-of-kids-with-special-needs

Helping sibs of kids with disabilities manage embarrassment
http://expertbeacon.com/helping-sibs-kids-disabilities-manage-embarrassment

A Sibling Perspective: The Autism Doesn’t Care - AGE OF AUTISM
http://www.ageofautism.com/2012/09/a-sibling-perspective-the-autism-doesnt-care.html

Sibings, Disability and My Brother, Dana
http://www.withalittlemoxie.com/2012/03/sibings-disability-and-my-brother-dana.html

My Sister's Story (For Tessa)
Big brother learns of his sister's Down Syndrome for the first time.
http://www.youtube.com/watch?v=uKZuS5S0q5M

My little sister (who happens to have Down's syndrome) 2011 Part 2
Agnieszka and Magdalena
http://www.youtube.com/watch?v=-6jIVTEWBhQ

My little sister (who happens to have Down's Syndrome) 2010 Part 1
Agnieszka and Magdalena
http://www.youtube.com/watch?v=P61qn7aguJo&feature=fvwrel

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