Families who have a child with special needs have different parenting challenges. Additional doctor visits, therapy and other specialty care add to a family’s already packed schedule. For siblings of those children, it’s a typical day. However, for parents, juggling the multitudes of activities can lead to stress — and some guilt.
Juggling Act
Time — or lack of it — is perhaps a parent’s biggest hurdle.
“A child who has any kind of disability just takes more time, whether it’s the use of equipment, going to therapy or the amount of attention they require because of behavioral problems,” says Kaye Stanley Bryson, Ph.D., director of children’s services for the Medina County Board of Developmental Disabilities. “It’s difficult for parents to meet the needs of all their children, whether they have disabilities or not, (and) adding one that has a greater time need makes it even harder.”
Judy Doyle, parent advisor coordinator for the Parent Mentor program at Akron Children’s Hospital and a mother of three — 20-year-old Madison, 18-year-old Sally and 16-year-old Jack, who has cardio facio cutaneous (CFC) syndrome — recalls that early on, it was difficult to do all the activities her daughters wanted to do.
“For example, it’s hard to take a medically fragile kid to a soccer game,” she says. “My husband ended up coaching, so he was able to take the girls to soccer and be there with them. We just figured out ways to let them get out and do their own activities.”
“I am married, but my husband and I both work full-time, so we divide and conquer,” says Leslie Rotsky, education project manager for Milestones Autism Resources and mother of two, 9-year-old Annie and 11-year old Jacob, who was diagnosed with autism. “We used to both try to do everything for both kids, from Annie’s soccer games to Jacob’s therapy sessions. We ended up very, very tired. Because there’s two parents and two kids, we take turns spending equal time with both kids.”
Rotsky adds it’s important to know when to ask for help. “We’ve tried to build a support network by engaging family and others when we need help. In the beginning, parents may feel guilty or embarrassed asking for help, but the other caretakers are genuinely glad to help.”
Understanding and Support
It’s also important to help your typical child understand what makes their sibling unique and educate them regarding their care.
“When Annie was 3 or 4 she asked, ‘Mom, does Jacob have autism?’” Rotsky says. “I knew then that we had to have a formal conversation with her about Jacob’s needs.”
After explaining that Jacob’s brain doesn’t work like hers and that he needs extra help, Rotsky and her husband began engaging Annie in Jacob’s activities.
“Annie has had opportunities to engage in what’s different about Jacob’s life so she understands it better,” she says. “She’s seen therapists and teachers working with him and can imitate some of what they’re doing to help him.”
Doyle says that because her daughters were so young when Jack was born, they didn’t know any differently. “From an early age, they learned this was their normal,” she says.
Because CFC syndrome is so rare, the Doyles have networked with other families that have children also diagnosed with the disorder. This has helped Madison and Sally to see that they aren’t alone and that other children have needs like Jack’s.
“Families often struggle to keep that balance, because while they want a typical child to understand and be involved in their sibling’s care, they also want that typical child to have a typical life,” Bryson notes.
She recommends Sibshops — a curriculum offered by various agencies that is designed to help typical children understand their siblings’ needs — as well as the local library.
For children age 3 and younger, each county offers a Help Me Grow program, which helps parents find available resources, Bryson says, adding that once children are in school, special education directors, school psychologists and teachers are great resources.
Also check with your child’s pediatrician, advises Doyle. Rotsky also recommends resources such as Milestones, Autism Speaks and the Autism Society of Greater Cleveland.
She adds to never overlook the advice and experiences of other parents. “I learned a lot in the parking lot of Jacob’s schools, when all the parents were waiting to pick up their children. Other parents know the really good therapists and support groups in the area. Get out of your car and talk to the driver next to you.”
A Balanced Family
The parents and professionals interviewed for this article offered several tips to cater to both special needs and typical children:
- Create Supports — Don’t be hesitant to seek help from friends, family or other caregivers, who usually are glad to help. This can help you manage time, which is one of the biggest challenges when raising a child with special needs.
- Seek Additional Resources — Find available resources in your community by talking to other parents or asking your child’s pediatrician. Contact your county’s Help Me Grow program for assistance in finding local resources.
- Carve Out Alone Time — Don’t forget the needs of your typical children. Set aside time that’s just for them to do activities they enjoy. A “date night” with Mom or Dad is a great way to provide one-on-one time.
- Find Group Activities — Spend time as a family doing things all your children enjoy. This will vary depending on the abilities of your special needs child, but some examples include swimming, an aquarium or visiting a fully accessible playground.
- Foster Understanding — Work with your typical children to help them understand the special needs of their sibling. If they feel comfortable, involve them in the care of their brother or sister, but make sure they also have time to themselves or to play with other typical children.
