Like a boulder in a rushing stream, our daughter sat calmly reading on a chaise in the living room, her brother sprawled on the floor next to her, crying and tantrumming. Three adults (me, a babysitter and an ABA therapist) swirled around trying to get him off the floor and back on track. Throughout, his sister was absorbed in her book, unfazed by the special needs melee.
Not for the first time, I recognized how different her sibling experience is from mine. I grew up with three typically developing siblings. She and her typically developing younger sister are growing up with a brother with autism.
What’s it like to grow up with a sibling with special needs and severe behavioral challenges? I’m curious about the girls’ experience and want to support them and their relationship with their brother. By coincidence, the night of the tantrum I was attending a panel discussion featuring people who had siblings with special needs. Through personal experience, research, and educational events like the siblings panel, I’ve learned ten strategies for nurturing the special needs sibling relationship, which include emotional as well as financial and logistical supports.
Assume Full Responsibility
Clearly communicate to your typically developing children that you (the parents) are responsible for your special needs child’s lifelong health, safety, stability and happiness. “It’s my job to take care of your brother,” I tell his sisters at every opportunity, and back it up with my actions. Whether they express it directly or not, siblings are thinking about this issue. His sisters have already asked the question, “Who will take care of our brother when you die?” Take charge by creating a plan for lifelong support and communicating it to your immediate and extended family.
Set Up a Special Needs Trust
If your child receives or is eligible for government benefits such as Medicaid and Social Security (SSI), it’s important to set up a special needs trust to provide ongoing financial support for your child while preserving eligibility for government benefits. The primary purpose of a special needs trust is to pay for items or services that aren’t covered by Medicaid or SSI, ranging from clothing to a personal caregiver if needed.
Set Up an ABLE Account
People with disabilities now have access to an ABLE account. Think of it as a 529 (college savings account) for the expenses associated with living with a disability. You can invest up to $10,000 tax-free and the account can be funded through your child’s special needs trust.
Ensure Access to All Available Benefits
If your special needs child won’t be able to live independently, as is the case with our son, ensure that your child has the services needed for housing, supported living and health care after your death. Our son is a client of the Regional Center, receives In-Home Supportive Services and Medi-Cal services, and may qualify for other benefits as he gets older. I will ensure that he has all resources available to him for the life-long care he will need, and advocate to preserve those benefits.
Several speakers on a special needs siblings panel said that their parents had downplayed their accomplishments and achievements to avoid hurting the feelings of their special needs sibling. For our family, it’s the other way around: I have to actively look for opportunities to celebrate our son’s achievements. Recently he got a certificate for following the rules on the school bus, which I taped on the fridge. The girls giggled but they also congratulated him. All children need and deserve to be independently celebrated.
Give Them Space
A psychologist once observed that our son takes up a lot of space: he is verbal, loud, and frequently inappropriate. In some ways, providing distance is getting easier as the girls are getting older, their lives are naturally separating from his with birthday parties, activities, outings with friends. But when the children were younger I had to consciously limit and monitor joint activities with their brother, especially for his younger sister. It’s also important to find time to spend alone with each of your children. On the weekends, I carve out time to take each child on errands alone.
Find the Humor
A special needs sibling can be disruptive at worst, annoying and embarrassing at best. Our son throws tantrums, makes inappropriate comments and, at times, intrudes on time with friends and family. In his worst moments, he can be physically aggressive, destroy property, swear, and spit. The more that you can lovingly and respectfully find moments of humor to share together as a family and frame your child as quirky, different and lovable, the more you can build up goodwill for your child. The girls and I respectfully share funny stories about their brother, like the time that he invited the UPS delivery man for a sleepover, or when he “helped” a young man pull up his fashionably low-hanging pants.
Talk Openly and Honestly
Build and maintain open lines of communication both within in your family and in your community. Some questions and comments will be painful – “Will he ever get married?” “What if I have a child with autism?” “I wish I didn’t have a brother with autism” – but I’ve found that acknowledging his sisters’ emotions and addressing their questions matter-of-factly helps to ease the sting.
Acknowledging that we all face challenges, whether we have a disability or not, helps to broaden his sisters’ perspective; as does reminding them that their brother did not choose to have autism and needs our family’s unconditional support and love.
There’s an educational component to parenting a special needs child, and increasing understanding about differences can help to smooth your child’s path in life. I’ve helped to organize diverse abilities awareness events at his sisters’ elementary school, bringing in speakers and organizations that provide services to people with special needs, such as guide dogs. The students enjoyed the conversations that these events generated and many parents expressed gratitude for the chance to have an open dialogue about differences. I also conduct a lot of community outreach – writing letters to coaches and neighbors, even setting up a meeting with our local police department to introduce them to our son.
Help Siblings Answer Questions
People are curious about autism and people who are different. I help his sisters develop responses to common questions or to brainstorm responses to questions that they aren’t prepared to answer. Unfortunately, common ones are: “what’s wrong with your brother? Or “why is your brother weird?” Our go-to response: “there’s nothing wrong with him. His brain just works differently.” And why wait for people to ask? I’ve found that letting people know upfront that our son has autism can proactively prevent misunderstandings and ease discomfort.
Find Your Support Network
Connections and relationships with other families with special needs children or with typical families who accept your non-traditional family structure are critical for your family’s well-being. I meet regularly with other parents who have special needs children and am active in our local special needs community. Seek out organizations that cater to people with special needs – join parent groups, listservs, and private Facebook groups to stay up-to-date on benefits, services, respite nights, events, and activities. Our family has participated in some amazing activities through special needs organizations – sea-kayaking, surfing, skiing, attending plays, and family camp.
Our younger daughter participates in a therapy group for siblings of children with special needs, and appreciates being able to share her feelings with people who understand her unique experience. Our older daughter is a peer mentor in her middle school’s special day class, and received a citizenship award for her ability to connect with people who have disabilities. Special needs parents need adult support and respite in order to effectively parent and care for each of their children’s unique needs.
It’s challenging but important to nurture special needs sibling relationships. After your death, your child’s siblings will likely be the trustees for his or her special needs trust and make decisions ranging from housing to health care. For emotional and pragmatic reasons, siblings will be a lifetime resource for your special needs child, and hopefully loving friends as well.