Every parent wants to give their kids equal attention, but when you have a child with special needs, that’s not always possible. They require more of your focus, leaving your other children to feel a range of emotions that, while normal, can affect their development. The reality is that siblings of someone with special needs have special needs too. This isn’t the life they expected either, and they don’t have the adult coping and reasoning skills to manage them that parents hopefully have. What we’ve learned from counseling parents and from our own personal experience is that, by being intentional in our actions, we can ultimately help our kids feel supported and have a sense of purpose and belonging.
“Siblings of someone with special needs have special needs too.”
Justin was 18 months old when Hali was born. As Hali missed early developmental milestones, we knew things were not right with her. Eventually she was diagnosed with a seizure disorder, an intellectual disability, and a Chiari malformation (a structural defect in the cerebellum). Living with these conditions obviously presented many challenges for Hali over the years. Life may have been even more challenging for Justin. Like so many siblings of kids with special needs, Justin not only had the challenges every other child and adolescent faces growing up, but also the questions that come when your little sister has special needs.
One thing Karen and I recognized, as Justin got older, was that his attitude toward Hali was often a reflection of ours. We started to notice that Justin was impatient with Hali after he had seen us be impatient with her. When we were peaceful around her and with her, Justin typically was as well. Of course, Justin had the same frustrations that every big brother has with a little sister. We just never wanted Justin to be embarrassed because Hali has a disability. Our acceptance of her, and our trying to live a balanced life, we believe, went a long way toward his acceptance of her.
Here are some things that we have learned about siblings and their feelings from talking with Justin and many others who have walked in his shoes.
“Survivor’s Guilt.” It’s not uncommon for a sibling of a special needs child to feel a sense of guilt—to think, “Why do I get this life while my sister/brother struggles?” Justin felt this and, as a result, never wanted to disappoint us. He felt the need to be twice as successful. This pressure may not come from parents. We may actually be doing a good job of accepting the limitations of our child with special needs, but the sibling has a desire to make up for the lost dreams. We tried to take the pressure for perfectionism off by telling Justin, “We only want you to be what you were created for. That’s all you can do, and that’s more than enough.”
Anger. When the attention of parents is focused largely on the child with special needs, the other child can feel invisible to their own family. This loss of identity can leave them unable to see themselves as anything other than the sibling of a child with special needs. Over time, this can create feelings of growing resentment towards their brother/sister. The only way they know how to express this is through anger and rebellion.
Loneliness. Being a sibling of someone with special needs can be isolating—not just because parents must spend more time and energy on their brother/sister, but because their lives are unique compared to their peers and friends. When Justin was around 9 years old, Hali had an emergency and we had to leave him in the care of our friends. Justin shared with us later in life that when he got to school the next day, he looked around the classroom and realized that no one there could understand what he went through the night before. Suddenly, he felt very alone.
So, how do we try to ease these burdens for our children? Here are some suggestions from years of trying, failing, getting back up, and trying again.
1. Establish the difference between attention and love.
Early on, we told Justin, “We don’t know where this is going to lead us, but we know Hali is going to need a lot of attention. Attention does not equal love. She’s probably going to get more turns than you, but she won’t get more love.” As long as they know they’re not invisible to us and that they will get a turn, they will be okay. They will soon discover that we have plenty of love to go around.
2. Emphasize that no individual is more important than the family.
To be the best family we can be, we accept that everyone, ourselves included, gives up a turn. That was important for Justin and for Hali. When our kids with special needs grow up thinking life revolves around them, they will struggle socially. Then comes adulthood and the world will not revolve around them. The struggles will go beyond just social issues. We tried our best to not make everything about Hali and continue to try to model for both of our kids the biblical teaching, “It is better to serve than to be served.” It’s easier to teach our kids when they are young to give up a turn than it is to fix it in adulthood.
3. Prioritize what’s important to the sibling when you can.
When Hali was 15 years old, we were told she had needed an invasive surgery that would require a lot of our attention. It needed to happen soon, but was not an emergency. It was in the middle of Justin’s senior year and football season. With confirmation from the surgeon that Hali’s condition would not worsen, we set the surgery date for when we knew his football season would be over. Every child needs to know that if it is important to them, then it’s important to us. Time has a way of allowing us to do that.
4. Be honest.
The one thing we regret is we weren’t more honest with Justin about Hali. We would reassure him that everything was ok, and then a doctor would tell us she needed surgery. Justin would say, “You lied to me. It’s not going to be ok.” Knowing what we know now, we would have approached that differently.
5. Don’t make them grow up too fast.
We oftentimes will start having adult conversations with our kids before they are emotionally equipped to process everything. They become “third parents” for their siblings. But that’s not fair to them—they deserve a childhood. While honesty is important, you truly have to find that balance of telling the truth but not giving them more than they can handle. It’s one of the greatest challenges of parenting.
6. Don’t hide the child.
A lot of families leave one parent at home with the special needs child out of fear or convenience. But when parents keep their kids at home when they could otherwise take them out, they’re not doing anybody any good. We wanted to show Justin that Hali was not someone to be hidden—she was part of our family. We weren’t afraid to put Hali out there, so we took Hali everywhere with us. Of course, the ability to do this depends on the family and the circumstances of their child’s condition. But when you can, bring them with you. If we want the world to accept our children with special needs, we have to be courageous enough to take them into it so that the world can get to know them as people and see past the disability.
7. Create an environment where the siblings provide mutual support.
We had Hali involved in Justin’s life, and we had Justin involved in hers. Sports were a big deal in our family, so she was always involved in Special Olympics and Justin with football and other sports. But they never played at the same time. That way, they could both be there to encourage each other when they were playing.
8. Make a home that your child will want to come back to.
We worked very hard to build a family that Justin would want to come back to after college. Having that longer-term perspective allowed us to make more intentional decisions that would support our goal. We made some rules: we were going to have a few nights a week where we would sit down as a family for dinner. And it will be peaceful—no TV, no cell phone, just time where we are doing things together.
9. Stay out of survival mode.
If parents are in survival mode, creating a peaceful environment is hard to do. You’re just trying to keep your head above water. You may feel like you need to do every item on your list, and you’re always in a hurry because it’s too long to finish. Creating that chaotic lifestyle teaches our kids not to be still. Our advice is to dream for your child so you know what to say yes and no to—to be intentional about what you’re involved in. We did not want to run at the pace everyone else did. Karen’s favorite saying is, “If you need your ducks in a row, your child will not only get them out of a row but will steal your ducks.” Most days won’t go according to the plan, but when we can be intentional, we’re able to save enough emotional and physical energy to manage the day.
10. Make the child without special needs feel special too.
We planned many parent-son dates. Justin always got to choose the place. Giving him one-on-one time gave him those opportunities to open up, connect, and feel that he mattered to us.
11. Be consistent.
For our kids with special needs, you never know what the day is going to be when you get up. We set rules and boundaries, and we made sure that even though we were exhausted, we would be consistent in discipline and in everything we did.
Karen was the one Justin would come and talk to. He was an introvert, and we realized early that if he came to talk, Karen needed to drop everything immediately because he needed to talk…and it might be a while before he’d talk again.
13. Connect the sibling with other siblings of special needs children.
When your child finds someone who shares their experience, it can be like speaking a common language. There are so many more opportunities to connect than ever before. For example, you can find a variety of online “sib shops,” or workshops for siblings of people with special health needs.
We hope these thoughts are helpful as you do your best to try to balance a very complicated life.