Article at a Glance
When both my kids came running to the car after school, the beautiful day took a turn. Suddenly my car was occupied by two children fully engaged in their separate meltdowns. Joshua was in tears because he was stressed out about his irrational fear of numbers. His teacher had asked him to stay a few minutes later than the bell to make sure he had everything he needed in his backpack. Whitney was upset because Joshua’s autism meltdown happened in front of the mean girls. Now she was afraid that everyone in her middle school would tease or say terrible things to her or her brother.
As I have watched my daughter Whitney over the past twelve years, I have seen her mature and grow into a compassionate, patient, and caring young lady. She has also had her fair share of struggles and challenges. Having an autistic brother has given her many insights, perspectives, and experiences I never had at her age. At just six weeks old, Whitney began accompanying Joshua to play therapy and speech appointments. Later, she attended his special education preschool as a peer model. Whitney has seen her fair share of meltdowns and lived through her fair share of strict schedules and rituals over the years.
In spite of all the challenges and struggles, Whitney has developed a special bond with her brother.
In spite of all the challenges and struggles, Whitney has developed a special bond with her brother. While our family dynamics can sometimes be complicated, I am aware that Whitney needs her own emotional support and development outside of her brother’s autism. Here are some things I’ve learned that have helped me to cultivate the relationship I have with my daughter while I also try to fulfill the needs of my son with autism.
Parenting can be a rewarding and overwhelming job for anyone, but families raising a special needs child can feel extremely strained and fatigued. Extended family and trusted friends can help shoulder the responsibility of parenting—for both the special needs child and the siblings of the special needs child. Grandparents and friends can temporarily attend to the needs of the special needs child, allowing parents to attend important events for other kids in the family. Trusted helpers can also support siblings in their activities while parents attend the needs of the special needs child.
Family and friends may not always be available, but many communities offer special services through private organizations and government resources. Organizations such as ARC, ASPIRE, and Friendship Circle have many local chapters to connect with special needs families. State governments also provide access to services through the Department of Human Services. Reaching out to others for support can parents better meet the needs of both their special needs children and typical-developing children.
Siblings are often very aware of their brother or sister’s special needs and diagnosis. Because they grow up watching and learning how to care for a special needs sibling, typical-developing siblings are often patient with disruptions, flexible when plans change, and know how to comfort their distressed sibling. Being a typical-developing sibling often requires added maturity and responsibility. It is easy for parents to rely on their other children for help, especially since typical-developing siblings are often are willing to pitch in. But it is important to remember, that our other kids need a life and identity outside of their caregiving role.
For about two years, Whitney and Joshua were in the same swimming class. Deep down, I loved that they were at the same level. It meant that Whitney could keep an eye on her brother and help explain some of Joshua’s behaviors to their teacher. Eventually, Whitney exceeded her brother’s abilities. At first I was disappointed. Joshua’s “interpreter” woul dno longer be in the pool. Then I realized it would be unfair to hold Whitney back just to be Joshua’s helper. Since that incident, I have tried to be more aware of letting her grow and succeed in the ways she needs to and be more careful not to take advantage of her caretaking skills. Protecting and encouraging our typical-developing children’s growth and their right to experience childhood is just as important as protecting the rights and experiences of our special needs children.
Therapies, doctor’s appointments, and the daily physical and emotional support for special needs children can deduct time from siblings. It can be tough to find stress-free, recreational time for our other kids but planning special “date” times can help create a space to cultivate these relationships. A few minutes during the day, a couple hours on a Saturday, or even a weekend getaway can help ensure siblings get the time they need with parents too.
I have found that my daughter appreciates any time I can spend with her—even just 10 minutes—as long as she has my undivided attention.
Because of their maturity and understanding of special needs, teachers and other adults in the community can rely heavily on special needs siblings in educational or social situations. Ask your child if they are okay with being a support to other special needs children outside of their home. Check in with them often to see if they or feeling overwhelmed or burned out. Because these siblings feel they need to be helpful and understanding, they may not recognize burnout from their caregiving role.
Whitney has often been assigned a desk next to a special needs child or being partnered up with a special needs child because of her experience. Sometimes she is okay with this and other times she has told me it can be too much. Stay in open communication with the teachers and other adult leaders in your typical-developing children’s lives so you can advocate for their needs too.
Siblings of special needs children juggle many emotions. Because they love their special needs brother or sister and want to support their parents, they may put their needs aside as secondary. They do not want to be an additional burden on their parents, so they put pressure on themselves to be perfect or successful. They are human and may feel many of the same emotions as we do as parents. They might become embarrassed, frustrated, and burned out.
Whitney has dealt with many of these conflicting emotions. As a middle schooler, she has been embarrassed by her brother’s public meltdowns. She has gone to bed late on many school nights because she has had to wait for her turn with homework help. Siblings manage many more emotions and challenge than their peers and can feel alone in their struggles. Check in with your child often and ensure they have someone who can be supportive at all times (whether that’s you, a counselor, trusted family member, or a therapist) to encourage healthy emotional discussions.
Many communities offer support groups and camps for siblings of children with special needs. Some of these resources can be found through organizations such as ARC, ASPIRE, and Friendship Circle, and some can even be found online through sites such as siblingsupport.org. Some groups like Siblings of Autism even offer scholarships and other opportunities for siblings of special needs children. Community programs like these can help lessen the isolation many siblings experience.
Growing up with a special needs sibling can be difficult, and it is important parents acknowledge the challenges and struggles our typical-developing children face. Remembering to find support for ourselves and each of our children can help enrich our relationships, strengthen our families, and allow all our kids to develop and grow in the ways they need.
About the writer:
Sarah Beck lives in Fargo, ND, and is a writer, blogger, wife, and mom of two great kids: an 11-year-old daughter and a 13-year-old son who has autism.
You can read about her autism-meets-middle school adventures and the challenges, victories, and learning curves that happen along the way at thisautismlife.com.