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Supporting Siblings of Spectrum Kids

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by Brooke L. Zavala
Autism Asperger’s Digest
| May/June 2012

Why Support Groups?
It doesn’t matter how good parents’ intentions are or how hard we push our kids to make them feel a sense of obligation to support their sibling on the spectrum. The thing we must remind ourselves as parents is this: these kids already know what autism is. These are kids who experience autism on a daily basis. Just as we parents had no time to prepare ourselves for what to expect when a child is diagnosed with autism, neither did they. These kids do not live so-called normal lives.
Just as parents of spectrum kids need support from others outside the immediate family, the siblings of spectrum kids need it, too. If there is support to reach out to in a community, it is usually geared toward the parents or the child with autism. Sibling support groups are too often few and
far between.
Over the summer I took matters into my own hands and gathered a group of siblings of spectrum kids from the parent support group I belong to. I was curious to see if the impact my son with autism has had on my own kids would be the same for other siblings of spectrum kids. I was the only adult there and figured it would be like pulling teeth to get them to talk about autism.

To my surprise all it took was for me to ask, “What is it like living with your brother or sister on the spectrum?” They couldn’t tell me fast enough, so I just let them talk. I held back my own emotions as each one took turns telling me what life was like for him or her. One of the kids spoke about the impact autism has on not just life at home but also that it seems to follow him wherever he goes. Others expressed how their view of autism affects the way they interact with others outside the home, and the emotions they feel, from sadness to anger, when they see classmates with special needs being bullied at school.

The Difference One Sibling Support Group Can Make
To my surprise all it took was for me to ask, “What is it like living with your brother or sister on the spectrum?” They couldn’t tell me fast enough, so I just let them talk. I held back my own emotions as each one took turns telling me what life was like for him or her. One of the kids spoke about the impact autism has on not just life at home but also that it seems to follow him wherever he goes. Others expressed how their view of autism affects the way they interact with others outside the home, and the emotions they feel, from sadness to anger, when they see classmates with special needs being bullied at school. The support group I created has helped the siblings of children with autism in many ways I never expected. The following are positive takeaways for each sibling who attends:

I can feel unconditional acceptance from other siblings of spectrum kids. There is a bond created among families that allows us to cry one moment and burst out in laughter the next. A sister decided to tell an embarrassing yet funny story about an incident in the grocery store, and all the kids were giggling because they understood why it was funny and before long she had us all laughing. What I saw happening was the same thing that happens in our parent support group—through tough moments of resentment, anger, and sadness can come release.

I can make friends who share a similar background. For these siblings, bonding and finding friendships among the group is so valuable. My three oldest children will rarely ask friends to spend the night at our house because they know they will be asked many questions regarding their brother’s behavior. I was surprised when my daughter asked if she could have a friend spend the night. When I realized it was a girl from our sibling group, I knew she was finally able to fulfill her desire to have a friend spend the night and just have some fun without her brother being the center of attention or having to explain his behavior.

I can have a safe place to share and listen. One sister told me she often experiences deep sadness and feels worried about what will happen to her sibling with autism in the future. I asked her if she had spoken to her parents about how she was feeling. “I know my parents love me and care how I feel, but I don’t want to add to their stress and I know they have enough to deal with. I don’t want to make them feel bad,” she replied.
This young girl truly believed that expressing what she felt would only result in more stress and pain for her parents, so she remained silent. Because this girl was able to share so many thoughts and feelings she had kept inside for so long, I felt a huge weight had been lifted off her mind that day. This feeling was confirmed by the hug and thank-you I received from her before she left to go home. She also wanted to know when our next sibling meeting would be!
There is something about being able to share struggles and concerns with those who can relate that makes siblings of spectrum kids more receptive to support and encouragement and even advice. The anxiety of what will happen in the future seems to lessen with having the support of others around their families.

I can recognize the strengths and challenges in regard to my sibling with autism. When siblings are provided with an outlet to discuss the many struggles they are challenged with, they also will begin to realize many good things about living with autism that are available to them because of the unique perspective they have developed.
I can find positive solutions to problems from support group members. When they don’t know how to handle difficult situations, I am able to offer siblings positive solutions. Many brothers and sisters react out of instinct to protect their sibling with autism when they encounter someone who is being cruel. Parents want their children to be respectful, but when a negative comment is made by an adult, it leaves a sibling feeling a bit confused about how to respond. Siblings can find support by listening to how other kids have reacted in similar situations. I have used these moments to tell siblings they should never feel ashamed if they do react in a negative way because it is hard even for parents to always react appropriately. I use these examples to remind siblings that people can be judgmental simply because they are afraid of something they do not understand. Siblings can be empowered when told the truth of how special they are to know and understand autism the way they do. If siblings begin to see that if people react because they lack understanding, then they might feel a sincere desire to find ways in which they can respond that brings education and awareness to their community.

I can have an outlet to relieve stress. Siblings of spectrum kids deserve time set aside that is only about them. We need to provide them with outlets for the stress they feel. These support groups are outlets for the negativity the kids feel in their lives. Much like the young girl I spoke with who kept her feelings locked up and silent, siblings must dispose of bad energy, too.

I am not alone. Finding that they are not alone and there are other kids who deal with many of the same challenges they do gives validity to how siblings of spectrum kids feel—resulting in allowing them to understand that the emotions they sometimes have are normal and okay.

Having support systems in place for parents and siblings of spectrum kids provides relief. Siblings can find the strength they need through these outlets to bring awareness about autism to their community in positive ways. Hearing the voices of siblings of spectrum kids talk about their lives gives me insight into how special these children really are and how one day these same voices will be our future leaders. By giving my neurotypical children the support they need, I am also providing an outlet for them to develop the confidence they need to continue making such an amazing, positive impact on those around them.

BIO
Brooke Zavala lives in Chillicothe, Ohio, with her children. She’s a member of the ROARS (Reaching Out for Autism Research and Support) Group.

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.


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