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Supporting Siblings

Authors: Julia Chalker, Sibshop Facilitator, Board President of REACH Resource Centers on Independent Living, Board Member of The Arc of Dallas/Fort Worth Area, Transition Coordinator of a North Texas School District, and Bobby’s Sister and Guardian

Abstract: Julia shares her experiences growing up as the sibling of a brother with autism. She later became his guardian and describes her recommendations for families to consider when raising and doing long-term planning for their children with special needs. She emphasizes the importance of including siblings in discussions about long-term planning and how to support the unique needs of siblings who sometimes put their needs and feelings on hold.

Siblings will likely be in the lives of family members with special needs longer than anyone, highlighting the need to support these brothers and sisters early on.  

I grew up in a time when if I told someone that my brother had autism it was VERY RARE for someone to know what I was referring to. I didn’t know ANYONE who had a brother or sister with autism or any other significant disability. I had no one to talk to who understood what it was like to live with someone who had behavioral issues (i.e., screaming, banging his head, biting himself), required my parents’ constant attention, and was destructive to our home and many of my belongings.  

I wear several different hats now—Special Education/Transition professional in the public school system, systems advocate (serving on the board of the local Arc chapter and the Center on Independent Living in my area), Sibshop facilitator, and, most importantly to me, my younger brother Bobby’s guardian. I feel I have a unique perspective as someone who not only is a sister to someone with a disability, but I also have the opportunity to support other siblings through my work.  

I have met many, many siblings with brothers or sisters with disabilities over the years through facilitating Sibshops (a sibling support group) and working with families through the public schools. These siblings are very often truly exceptional individuals (and I’m not just saying this because I am one!) who demonstrate increased maturity, resilience in the face of challenges, social competence, and positive attributes such as patience, compassion, and sensitivity.  

Of course, these siblings often experience their share of challenges due to having a special sib, including stress, anxiety, isolation and resentment. Siblings may feel a lack of parental attention because of the amount of time and attention their sibling requires. They may also be resentful and feel that they are being treated unequally or have increased responsibilities. In addition, they may lack accurate information about their sibling’s condition and worry that their peers don’t understand their unique situation. 

I especially relate on a personal level about it being common for siblings to excel in many ways—whether it be academics, sports, music, or just being an overall “good kid.” There may be conscious or unconscious pressure from parents on their non-disabled children to excel in order to compensate for their brother’s or sister’s situation. In my case, it was extremely important to me to excel at everything I attempted, although my parents never pushed me to do so. Sibs sometimes place pressure on themselves and may internalize issues rather than seek help from their parents, feeling like their parents already have too much to deal with. Siblings also often express concern about the future when their parents are gone and what their life-long role will be in relation to their special sibling’s life.  

Here are some themes I have heard siblings discuss over the years as well as recommendations for parents that I hope may be helpful to you:

Provide Opportunities to Obtain Information

Brothers and sisters need to have an understanding of their sibling’s disability, its treatment, and its implications. Of course, the way this information is provided can change over time and is based on maturity. Most disability-specific organizations have materials for siblings as well as young readers.

Consider including siblings in discussions with service providers, ARD meetings, and in transition planning. This will keep them informed and help them feel valued. Siblings often have a unique perspective that can add value to discussions and planning.  

Maintain Open Communication and Acknowledgement of Feelings/Concerns

Good communication between parents and children is always important, but this is especially important in a special needs family. Active listening and having an “open door” policy will help ensure family members feel comfortable sharing their concerns, questions, and feelings with each other. 

Like parents, brothers and sisters will experience a wide array of emotions regarding the impact of their sibling’s special needs—expect and acknowledge these feelings. Communicating to your children that even sharing their most negative feelings will help them feel safe about doing so. 

Set Clear and Realistic Expectations

Since it is not uncommon for typically-developing siblings to set unrealistically high expectations for themselves to in some way compensate for their brother or sister’s special needs, be sure to convey your realistic expectations and unconditional support for them.

Expect Typical Behavior from Typically-Developing Siblings

Conflict between brothers and sisters is normal and expected, even when one has special needs, and this can be an important part of normal social development. Siblings deserve a life in which they are able to at times misbehave, get angry, and have typical fights with special siblings. They shouldn’t be made to feel guilty, be told to compromise, or be told to leave their siblings alone. Sibs often express that they feel they are treated differently and under a different set of rules than their special brother or sister.  

Have High Expectations for All Children

Everyone benefits when there are high expectations for all family members. It is important to acquire skills leading to more independence for everyone, including those family members with disabilities. To the extent possible, have the same expectations for your child with special needs regarding personal responsibilities and chores. This will help siblings by minimizing resentment as well as gaining skills that will help long-term and in adult life, when a sibling may play a pivotal role in their care.

Look for Opportunities for Them to Meet Peers

Just like their parents, brothers and sisters need to know that they are not alone.  I LOVE seeing the siblings I work with connect with other siblings who are sharing “the good, bad, and in-between” things about having a special sibling—especially when they hear one of their peers share a story and they realize that they are not the only one who has experienced a particularly difficult, embarrassing, or frustrating situation.  

Connecting with other siblings might occur through disability-related organizations, through meeting other families in your child’s school or program, or through a sibling support group such as Sibshop.

Recognize Their Concerns About the Future

As they get older and become more aware of their special sibling’s needs, brothers and sisters may worry about what obligations they will have in caring for their sibling in the future. Parents can help by involving and listening to their typically developing children as they plan for the future and by understanding that siblings’ attitudes about the extent of their involvement may change over time. 

Brothers and sisters may end up playing different roles in the lives of their special siblings, but parents should never assume to know what responsibilities typically developing siblings will take on in the future. Siblings should have a say in how involved they will be in the lives of their siblings who have disabilities as adults and should know that they have their parents’ blessing to pursue their goals and aspirations.

Provide One-on-One Time and Celebration of Achievements

It may be very difficult and take a great deal of planning and support from others, but it is important that parents carve out time to spend individually with their typically developing children. This conveys the message that they are there for them and also allows opportunities for sharing with each other. It is also important that a child’s special needs not overshadow another’s achievements and milestones. It may take creative solutions, respite resources, and flexibility to ensure that the accomplishments of all family members are celebrated. I love seeing special needs families work together to help each other make this happen!

Learn More About Sibling Concerns and Supports

The Sibling Support Project is a great organization that provides information, resources, and publications regarding siblings and their concerns. There are many sibling-related books and films. Consider hosting a sibling panel so that parents can hear from sibs themselves about their experiences and perspectives.  Explore any sibling support groups such as Sibshop that may exist in your area or consider creating one! The Sibling Support Network can provide guidelines for conducting a sibling panel as well as the Sibshop curriculum.  

I hope these suggestions will be useful to you. I wish more had been known about how to support siblings when I was a young girl—it likely would have saved me some therapy expenses later in life and helped me navigate the often choppy waters of having a brother with exceptional needs.  

I will end by saying that being Bobby’s big sister has been a huge influence on who I am today. Not only did this role lead me to my profession, but it helped me grow to be resilient, patient, compassionate, and passionate about advocating for change for all of those with disabilities. Just as importantly, it has given me a unique perspective and the ability to laugh at situations that others may not quite understand—because sometimes you just have to laugh to get through the day!

Please reach out if I can share my experience with starting a sibling support group.  Meeting and interacting with these exceptional siblings has brought me much joy and hope for the future.  

Julia Chalker
[email protected]

Julia and her brother, Bobby standing on a beach. Bobby’s face is turned toward Julia with lips puckered while Julia smiles at the camera.

Julia and her brother Bobby

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