5 Ways to Support Siblings in Special Needs Families
Making sure the other kids get what they need, too
When Sophie Kleinhandler was diagnosed with obsessive-compulsive disorder at 8, one thing that meant a lot to her was the support of her sister Rachel.
“My older sister started worrying about me,” Sophie recalled, “and she told me something really special. There’s a song called ‘Lean on Me,’ and she said, ‘Sophie, now that you have OCD I want you to lean on me when you’re upset and you can’t handle anything.'”
Rachel was a big help to Sophie, but Sophie’s OCD was hard on Rachel, too.
Sophie would get very upset if she was touched without warning. If someone brushed against her clothing, she had to immediately take it off and wash it. She had an aversion to commonplace sounds like breathing, yawning, sniffing, or kissing. Certain words set her off as well.
For Rachel, Sophie’s outbursts could be embarrassing. She didn’t know how to explain her sister’s behavior to her friends. It was also hard to concentrate on her homework or enjoy family vacations when her sister was slamming doors or melting down. Her parents spent a disproportionate amount of time on her sister, taking her to appointments and visiting when she was in a treatment center. And, of course, Rachel worried a lot about Sophie.
Siblings struggle too
“Rachel struggled emotionally,” said Kleinhandler. “She held a lot in. Her intense worries and fears about Sophie took a toll emotionally and academically. She’s very bright, but she went into a shell and really had a very difficult time sharing and expressing her emotions.” By the time Rachel was 16, Kleinhandler decided she needed professional help, too.
Dr. Jill Emanuele, a clinical psychologist at the Child Mind Institute, believes that more attention needs to be placed on how mental illness impacts the other children in a family. She points to the fact that when a child gets a physical illness like cancer, there are an abundance of support groups and therapeutic options for the siblings. With mental illness there are a lot less, despite the fact that psychiatric problems are far more common.
Related: Siblings Under Stress
When one child in a family has problems that consume a lot of attention, restrict family activities, or generate a lot of concern, other kids in the family may react very differently. “Some kids take care of themselves and persuade themselves that they don’t need attention,” said Dr. Emanuele. “Some start acting out and finding ways to get attention that might be negative. Some become big helpers and try to fix the problem for their parents. Some try to be extra good and avoid getting in the way. Some get angry.”
Hungry for attention
The most immediate challenge for many siblings is that when mental illnesses arise, parents have to spend more time focusing on the child with issues. “The siblings aren’t given as much attention, and they may not understand why,” said Dr. Emanuele. ‘Why are Mom and Dad always worrying about Peter? Why aren’t they paying attention to me? What did I do?’ ”
Having to compete for parental attention can lead to resentment towards the parents or the sibling soaking up the attention. Even a protective and supportive sibling can get frustrated, and feel unable or unwilling to complain.
That’s why Kleinhandler was proud of Rachel for finally articulating what she needed when she started applying for college. “We had a family conversation and she said, ‘I’m a person too, and this junior year is stressful beyond belief, and it’s hard, and I need Mommy—I need her help, I need her attention.’ ”
Here are five steps you can take to help children handle the challenges that come with having a sibling with special needs.
1. Talk openly about the situation
Dr. Emanuele says It’s essential for parents to clearly explain what is going on to siblings and answer questions they may have. “Some siblings may not fully understand what is happening with their brother or sister. They may feel guilty about it, that they somehow caused it. Or they may feel like they aren’t as important as their brother or sister because they don’t get as much attention.”
It’s essential for parents to listen to concerns the other children may have, and reassure them that you love them. “Let them know, ‘I hear you, I see you,’ ” she added.
Parents don’t have to use formal jargon like ADHD or autism or OCD. But they need to describe the behavior that kids might find concerning, and make it clear that it isn’t willful. Kleinhandler found it helpful to explain to her daughters that the disease was just like a bully pressuring their sister to do things she wouldn’t otherwise.
Speaking in terms of strengths and weaknesses is often helpful, suggests David Anderson, a clinical psychologist at the Child Mind Institute. “One sibling might have difficulties with emotional dysregulation”—getting emotional or melting down when things don’t go his way, he said. “But another might not be too good at basketball. So maybe your brother gives you a few extra shots in basketball, and he might need some slack because he has difficulty staying calm when you’re playing board games.”
It works for parents, he adds, because it avoids targeting the kid with special needs.
2. Spread the support around
When you have a child with special needs who needs a great deal of support and encouragement, the other children may feel that their achievements are taken for granted, they not getting as much praise as the struggling child.
So it’s important, as Dr. Anderson puts it, to “spread the sunshine around.” If you’re, say, really trying to reinforce one sibling’s behavior, instead of ignoring another sibling’s bid for attention, look for something very soon afterwards that’s positive about what that sibling is doing, and give him the same level of positive reinforcement.”
3. Set aside time for the each child
All kids, especially those who have a brother or sister who takes a lot of attention, need one-on-one time with parents. It can be challenging to fit in, but even small amounts of time, on a regular basis, can help a child feel loved and valued, explains Mandi Sliverman, a clinical psychologist at the Child Mind Institute.
“Parents have to remember to give every sibling attention,” noted Dr. Silverman, “”It may not be equal, but it has to be meaningful and consistent.” She suggests spending 10 uninterrupted minutes with each child before he or she goes to sleep, reading or coloring or doing a puzzle together.
Liza Long, who has 5 children, including one with bipolar disorder, sets aside time for each of her children to have dates with her. They get to choose what they want to do, and it’s something they look forward to. “I try to plan dedicated time with each of the kids because so much of our attention will go to my son with mental illness,” Long said. “You have to be really sensitive to that.”
4. Try to treat all children the same
Dr. Emanuele says she sometimes sees parents who have a child with special needs worrying that their other children aren’t getting a “normal” upbringing. They feel guilty and as a result they may let them get away with bad behavior or have whatever they want.
“Sometimes parents will be permissive with the other kids because they feel bad,” she said. “But these children still need to learn to be responsible for their decisions and their negative behavior, and that can’t slide.”
5. Look at the positive
Keep in mind that growing up with a special needs sibling teaches valuable skills and empathy, notes Dr. Silverman. “Sometimes children who have siblings with special needs have a level of compassion that makes them especially good friends, and they have a lot of friends, because they are patient and positive and understanding.”
Long said her kids are unusually empathetic to kids who are struggling with emotional or behavioral issues.
“The experience has made them much more tolerant and kind, and they are more sensitive to mental illness,” said Long. “My daughter, the youngest, came home from school the other day, and she said, ‘I sat with the bully at lunch time. I decided to sit next to him, and we talked, and he has ADHD, and that’s why he is a bully. He doesn’t want to be one.’ “