Having a brother or sister with a disability forces you grow up faster in some ways. It can trigger anxiety and resentment, or fierce loyalty, empathy and acceptance. Sometimes, all of those. As a parent, expect to ricochet between pride and worry for your tiny superheroes
By Tara Wilson
I always wondered what it would be like to have a brother or sister. As an only child, I was outnumbered by my parents and had no partner in crime. When I did something wrong, my best shot at blaming someone else was to frame the dog.
When our twin daughters were born just 22 months after our first daughter, I was really unsure about how to handle the sibling dynamic, but I felt like I had read enough How Your Birth Order Defines You magazine quizzes to have an idea.
The part I was completely unprepared for was how that all goes out the window when one of the siblings has special needs.
One of the twins, Maggie, was diagnosed with autism at age 2, and soon after that we learned that our oldest, Molly, has special needs of her own. If the sibling dynamic was daunting, the special siblings concept was overwhelming.
Being a Sibling of a Child with Special Needs is Hard
Having a brother or sister with special needs is a tough job, and kids in this position tend to have to grow up faster. They are expected to take on more responsibility and to have a higher level of maturity.
Related: Autism and safety: What you need to know
They make many trips to doctors, hospitals, and therapists, and have a parade of professionals coming in and out of their house on a regular basis. They see the long-term stress their parents are under, which can create anxiety in the child.
Then there’s the differences in expectations. We expect Molly and Grace to eat their vegetables and do their homework before screen time. Meanwhile, Maggie gags on vegetables, and often won’t even sit down for dinner, And she lunges for the iPad the second she gets in the door.
You can’t force a kid with sensory issues to eat something she doesn’t want to eat, and retreating into the iPad is her reward for soldiering through a day full of expectations and sensory bombardment. She needs to recharge so she can do it all again tomorrow.
So we have our reasons, but to her sisters I’m sure it looks like Maggie gets away with murder.
But they never complain about the double standard. Maybe it will all come out in a Mommy Dearest–esque memoir someday, but for now I don’t know whether to be proud of their maturity or worried about their anxiety.
Finances are tight for special-needs families. So many therapies, equipment and medicines are not covered by insurance or health care and need to be paid out of pocket. It’s common for one parent to stay home or work reduced hours to take a child to appointments, or because regular child care does not accommodate their child’s needs. So we don’t have the money for Florida vacations or to put in a pool, but for my kids’ friends, this is the norm.
And the extra stress takes a toll. “Siblings of children with disability were more likely than siblings residing with typically developing children to have problems with interpersonal relationships, psychopathological functioning, functioning at school, and use of leisure time,” according to a 2013 study.
More about siblings
Its author, Anthony Goudie, explains in a post for Bloom, a magazine and website about disabilities, “They tend to have a lot of anxiety and emotional problems, in terms of feeling unhappy, afraid or nervous of certain situations. They don’t tend to be able to feel that they can express their anxieties of fears, so they internalize them. They also have problems focusing attention at school.”
But There are Advantages, Too
“Kids who grow up with a sibling with special health or developmental needs may have more of a chance to develop many good qualities,” according to a parenting guide published by the University of Michigan Health System.
These include “patience, kindness and supportiveness, acceptance of differences, compassion and helpfulness, empathy for others and insight into coping with challenges, and dependability and loyalty that may come from standing up for their brother or sister.”
We have seen all these qualities in our children. Molly and Grace have both received Make a Difference awards at school, given to “those students who are consistently kind to others and who display selfless acts of service towards others.”
This year, Grace was invited to be a peer model for a social skills group, as well as to be a playground activity leader for a program aimed at increasing activity levels and reducing bullying at school.
She has been showing this leadership since she was 3 years old and holding up coloured blocks to encourage her twin to speak.
I rarely have to explain to the girls why someone should be included or talk about embracing differences, because frankly, they do a better job at that than I do. Empathy is a part of them and hasn’t needed to be taught.
My girls are very close, and they look out for each other, except when they are trying to kill each other over who gets to control the remote. I am convinced that having a sister with special needs has made them better people.
How We Can Help
While we embrace all of the goodness that being a special sibling brings, we are also mindful that we need to take extra care to make sure all our children know they are important and cared for.
Grace has been attending Sibshops for two years, where she is able to make friends with other kids who have brothers or sisters with disabilities. Molly loves to read books about kids like her—a favourite of hers is Rules by Cynthia Lord, which is about a girl who has a brother with Autism, and the effect he has on her life, both good and bad.
Sometimes we are able to go on special outings that we only have access to because of Maggie’s Autism. We always highlight to the kids that Maggie provides opportunities to the family.
And like any parent of more than one child, we try to foster each one’s individual interests and spend time with each kid one-on-one. As different as siblings of kids with special needs are, sometimes they are just regular brothers and sisters. Part of that is letting them know that it is okay to have those typical sibling quarrels and feelings of resentment, because even superheroes hang up their capes sometimes.
Resources
Sibling Support Project – contains forums and resources to support siblings of people with special needs
Find a SibShop in your community
Books and blogs
Parenting Through The Storm: How to Handle the Highs, the Lows, and Everything in Between, By Ann Douglas
The Sibling Support Project
Helpful books on Autism, from my blog
Life as the sibling of a child with Autism
Tara Wilson is an always-distracted mom of three tween girls. She writes about raising kids with autism and ADHD on her blog Don’t Lick the Deck, with a perspective of humour and imperfect mothering.
