In the spring of 1993, like a good mother, I began creating my baby daughter Kelene’s photo book. I purchased colorful paper, stickers and stamps to decorate the blank pages. I pasted in her newborn photo, where she smiles so much her nose squinches and her chubby arm hugs her stuffed Lamb Chop doll. I saved a lock of her curly hair from her first haircut, with plans to put it in the book on its own page.
Within 15 months, I had my second child, a baby boy, and only 15 months after him, I had twin boys, one of whom was soon diagnosed with autism. In four years, my husband and I went from thinking about what our first child would look like to being surrounded with four little people who had starkly different needs. The needs of Marcus, the twin with autism, swallowed up the lion’s share of my attention and time. Marcus is nonverbal and requires constant supervision.
I never finished the memory book project I had so carefully started for my first daughter. For years, the parts of the book I had not put together stayed in a Walmart bag, stashed in the promise-to-get-to-soon corner of my closet. I have never asked my daughter whether she felt slighted over not having a baby book. I have never asked her how seeing images of her earliest days of life encapsulated in a carefully crafted album might have shaped her self-worth.
I did not ask many questions of my other children in those days of raising Marcus, especially not questions about their well-being as they lived side-by-side with him. My focus on Marcus was required to prevent incidents as benign as him stealing pizza from someone’s plate at Chuck E. Cheese, or as serious as him running full-speed into traffic. The interventions were frequent, many were critical, and they did not allow me the luxury of giving equal attention to my other three children.
Still, my other three children were there, and they deserved more. What can parents in similar situations do? Plenty. And a host of clubs and workshops for siblings of children with disabilities are vibrant across L.A. County, providing a place where these kids can be the focus of all the attention and support.
Talking About Feelings
The sibshops at McRory Pediatric Services, Inc. in Tarzana serve children ages 4 to 12 and meet once a week in six-week cycles. Family counselor Jenny Pendleton facilitates the groups and combines play with therapy. “I play a wheel-of-feeling bean bag game,” she says. “The bag lands on a feeling, like ‘disappointed.’ The child then shares about a time when she felt this way.” It’s the type of activity that helps siblings feel seen.
Pendleton says parents of children with disabilities have no intention of ignoring their other children. But when parents are focused on taking a child with challenges to various appointments and therapies, siblings can feel pushed aside. “Their interests are left out,” she says.
My son Nathan, Marcus’ twin, expressed these types of feelings. “I began to distance myself from family when Marcus’ behavior became aggressive and when you guys started calling the paramedics and it seemed like he was not getting better, but worse,” he says. “I felt isolated then.”
My husband, Wes, whose sister has a physical disability, says a sibshop might have helped him feel less alone, less alienated. “I saw things as unfair toward me, but no one talked about it, and I felt I couldn’t talk about it, either,” he says. “I think I would have had less insecurity and felt like I belonged.”
Talking About Challenges
Sibling programs also help typically abled siblings learn about their siblings’ diagnoses and the particular challenges they face. These conversations can help families create a more inclusive environment at home.
Club 21 Learning and Resource Center in Pasadena serves individuals from birth to age 24 with Down syndrome and their parents, along with continued support for siblings. Teaching siblings to appreciate each other’s differences is an important part of Club 21’s sibshops program for ages 8-12. “The overall feeling of children who attend our sibshops program is, they all feel like they have been heard and understood,” says Laura Schoonover Stoner, executive assistant at Club 21. “When they are together, they feel known in their deep love, protection, concern and advocacy for their sibling.”
Emma Lee, a high school junior from Irvine, has a sister, Abby, who was born without irises in her eyes, a condition called aniridia. Emma says she often forgets about the struggles and surgeries her smart, talented sister, who is a high school senior, has had to endure. She forgets how Abby, who is quiet and reserved, might feel alienated socially and advises parents to communicate with their children about the lives of their siblings with disabilities. “Try your best to have in-depth conversations about what the differently abled sibling is going through,” Lee says.
Space to Play
One strategy sibling programs use to create a welcoming environment for siblings of children with disabilities is to give them space to play. Professional Child Development Associates in Pasadena hosts Sibling Saturdays for children ages 5-12 who have siblings with developmental disabilities. “Making food, making Play-Doh from scratch, scavenger hunts, tag and pretend play” are among the activities offered, says Amanda Calderon, who supervises the program.
My husband recalls that because his sister’s mobility was restricted, he felt restricted also. A sibling workshop such as the one at PCDA can offer children with similar frustrations a sense of freedom to be themselves.
Play is also front and center at The Sibling Club at Harbor Regional Center in Torrance, with monthly gatherings for various age groups. Maria Elena Walsh, who helps facilitate the Sibling Club and is assistant manager of the resource and assistive technology center there, says the idea is to keep siblings from feeling lost in the shuffle. “We want them to not feel alone,” she says. “We let our clients know they have similarities and differences. That usually sparks conversation. When our clients play, we want them to feel safe and know that it is a confidential place.”
Support at Home
My daughter’s unfinished baby book and the ballet lessons I could not give her because of time and energy too often diverted to support her brother still cause me heartache. A sibling program might have helped fill the gap. Experts from these programs also suggest strategies parents can do at home to navigate the complexities of showering all of the children in their households with love and attention.
Start by knowing your children well. “Know each child’s individual differences,” says Amanda Doma, a PCDA program supervisor. “Your child with disabilities will have their own specific needs, interests and challenges; as well as your typical child.”
It can be truly helpful to find someplace where your typical child can connect with other families who have a child with the same disability, such as an advocacy organization connected to that disability, or a sibling program. “Finding your community is key, and normalizing that they are a part of a bigger family other than their nuclear family,” says Stoner. Pendleton advises parents not to expect siblings to always include siblings with disabilities in all of their activities.
It is also important for parents to pay attention to and nurture the talents of all siblings. “At the appropriate time, communicate how some of the skills of living with a person with a disability gives skills that they will use the rest of their lives,” says Stoner, “that your family shapes you and gives you gifts and talents that will shape them in careers and relationships.”
Along with strengths, discuss the challenges posed by a disability. “When appropriate, it is helpful to discuss with your typical child what are some of their sibling’s challenges and strengths, so they are aware of how their sibling with a disability needs to be supported and how they can support as a brother or sister,” Doma says.
Pendleton recommends dedicating certain times – perhaps a movie date or bedtime – to spend with your typical child and using some of that time to discuss feelings, including any anger or resentment your child feels. Share your own feelings as well. But also carve out dedicated family time. “Provide time and space to do pleasurable activities as a family, where both children can interact,” says Doma, “even if it is through sharing the same space and engaging in parallel play or going out somewhere as family that both children will enjoy.”
The message you want to send to all your children, through your activities as a family and the time you dedicate to them individually, is that everyone is of value and needs support.
Darlene Kriesel, a Southern California-based writer and educator, holds an MFA in creative writing from UC Riverside-Palm Desert. She writes on education, social justice and the family.