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Montreal Families

Mixed emotions prevail when a sibling has a special need

Growing up, when my sister would say or do something others found “different” or “weird,” I was often asked: “what’s wrong with her?” My sister has autism, but trying to explain that to my peers didn’t always help. Some even taunted me, as if her disability was somehow contagious and I might have it too.

In families where one child has a special need, siblings face unique challenges and stresses. Often, we both love and resent our brother or sister. We understand that their disability is not their fault but most of us have moments of feeling embarrassed or fed up with their behaviour. We may also feel jealous or resentful that they get more attention from our parents. All these conflicting emotions can make us wonder if we are “bad” or “strange.” And to avoid hurting our parents — who we recognize are already shouldering a heavy burden — we tend to keep all these feelings inside.

The mixed emotions that siblings experience has begun drawing attention from professionals and researchers. Support groups are starting to sprout up across North America, giving siblings an opportunity to express their fear, anger, sadness and confusion in a safe place with others in a similar situation.

In Montreal, autism consultant Lise Sandstrom has led sibling support groups and says it’s important for young people to have a place where they can discuss their feelings and experiences without judgment and criticism. In many cases, siblings don’t find this support and grow up feeling like they are less important members of the family. The able-bodied kids often sense that parents are burnt out, and unless their friends have a similar family situation, no one seems to understand their array of mixed emotions.

Sibling support can be sought from a group, a health care professional, or a close adult. The important thing is to have feelings and experiences validated. Sandstrom says that the able-bodied child almost always gets less attention from the parents, simply because the adults are so exhausted by the work involved in parenting the special needs child. As well, the strain that comes from parenting a special needs child can take its toll on the adult relationships — divorce is a lot higher in such families. So it’s important that the family gets support and help from a therapist or counselor to help improve communication. This can also help a sibling feel more included in the family dynamic.

In the sibling support group that Sandstrom led five years ago, she asked her clients, all aged 8-12, to make a list of things they did and didn’t like about their siblings. “Seeing that there is some good in their siblings wasn’t something they would have ever thought about,” Sandstrom says. “It also prepared them to have something positive to say about their sibling when asked about them.”

Siblings of special needs children need supportFamilies should be aware that siblings tend to feel as though they need to take on more responsibility than is age-appropriate because they want to help their parents. “These kids may begin planning, as children, how they will take care of their aging siblings,” she says. “I had a 10 year-old boy who decided that he couldn’t have a girlfriend or get married because he would have to take care of his disabled sister. He just felt an immense responsibility.”

Siblings may also become overachievers, trying to make up for what the special needs child cannot do. Many children need reassurance that the adults don’t want or need them to be “perfect” by having straight “A”s at school, being the best athlete or the most talented artist. At the same time, able-bodied kids may feel sadness or guilt for going to university, developing a successful career or starting a family while their disabled 30-year-old sibling is still learning how to write full sentences.

Despite the immense challenges of being a sibling in a special needs family, there are some wonderful benefits. Many develop a deep sense of empathy and gratitude towards others. When we become adults, if we have dealt with the self-esteem issues inherent with getting less attention than our siblings, we can feel fully actualized as individuals. Many siblings say that they feel they are strong individuals and leaders in their professional fields, and are often understanding and appreciative of differences. Support groups can only serve to help siblings of any age, even if it’s to realize that we’re not alone.

Resources for siblings

The Abe Gold Learning Centre (Miriam Foundation) on Ferrier St., in Montreal will offer sibling support groups within the next three months. For more information, call (514) 345-8330 ext. 319 or visit www.goldlearningcentre.com.

Lise Sandstrom is happy to answer questions about sibling support, and may form another support group in the near future. She can be reached at aspergergroup@bell.net and (514) 229-2526.

Sibshops is a breakthrough support system founded by Don Meyer and based in Seattle. For more information, visit www.siblingsupport.org.

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