In high school, I travelled a lot for various conferences — to New York City, Kansas City, all around Ohio and Washington, DC. I thought my parents allowed me to go because they saw how beneficial these trips would be for me. But a few years ago, I learned this was not the case.
“I felt guilty,” my mum told me. “Because of Joey. We couldn’t do normal family stuff.”
Joey is my younger brother. He turns 30 this year. He can scarf down a block of deli cheese faster than a competitive eater, drink 2L so quickly it’s like a magic trick and sleep under enough blankets to suffocate a small rhinoceros. He also has Pervasive Developmental Disorder-Not Otherwise Specified, AKA PDD-NOS, AKA autism.
Parenting a child with autism, or nearly any disability, can be a whole different level of parenthood — an all-consuming, life-encompassing, this-is-why-I-was-put-on-this-planet level.
If that child has a sibling who does not have a disability (or two or three), it’s easy for that sibling to get kind of… lost. By necessity, parents often must prioritise the child with a disability, which can put the “typical” child in a tough spot.
So how do you assure the typical child doesn’t get shafted? Here are some ways to help make their lives a little easier.
Nurture their interests
Kathy Honeyman, a therapist who specialises in adults with autism spectrum disorders in Raleigh, North Carolina, has two adult children of her own: 29-year-old Rebecca, who has an active seizure disorder and is on the autism spectrum, and 27-year-old Elliot, who does not have a disability.
“I think the biggest tip I can give anybody is to pay attention to them and keep them up-to-date on what’s going on,” Honeyman says. She would tell Elliot, “Just because [Rebecca] gets attention, it’s due to medical issues and it’s not because we love her any more than we love you.”
In the end, she says, “It’s just sitting with them and listening to what they have to say about it, listening to their concerns.”
When Elliot was growing up, Honeyman and her husband made an extra effort to attend his games and events through the years. Similarly, my parents knew I wasn’t going to have a traditional upbringing — no group holidays or family dinners out for us — so they made sure I still got to travel, which I loved, and see things I could not experience with them.
Support their other relationships
My mother recently shared with me how thankful she was for my best friend’s parents, who let me tag along with them to dozens of dinners out and on long weekend trips. In high school, I spent a week in Florida with a family I babysat for — they needed another set of eyes on their four kids.
The last time I had stepped foot on a beach with either of my parents, I was six. But teenage me got to bury one of those boys in the sand until he was nothing but a head, hang out with a one-year-old on a pool raft, and bang pots and pans with the kids on the dock. I have a lot of family memories, though not all of them include my own family.
No one ever, ever, ever takes the place of Mum and Dad, but this is one of those instances where “it takes a village” is crucial.
Find some activities you can all do
Because so much of siblings’ time can be spent apart when their abilities are so different, parents can also find activities that children can do together. This not only gives the family time together, but it nurtures sibling relationships.
Kelly Miltmore, who has a son with autism and a neurotypical daughter, told Metro Parent that she often takes her daughter to programs that are autism-friendly, such as equine therapy. You might catch a sensory-friendly movie or make an abstract painting together as a family.
Remember your child with a disability isn’t a “lesson” to his sibling
This might seem like a no-brainer, but it’s worth mentioning: Don’t use your child who has a disability to prove various points to your non-disabled child.
Stephanie Levandusky, of Brunswick, Ohio, has two children who have osteogenesis imperfecta, more commonly known as brittle bone disease, which is characterised by fragile bones that break easily. Her middle child, Caydence, does not share her siblings’ diagnosis.
Because Caydence is only four, Levandusky says the most important thing she does is treat her like any other four-year-old. “If Caydence fell and scraped her knee, I’m not going to say, ‘You need to toughen up. Your brother breaks bones.’”
Don’t put too much pressure on them
Those of us who have siblings with disabilities grow up a bit faster than our peers. We have to. It isn’t good or bad; it’s just routine. After Joey turned six or seven, I was the only person my parents trusted to babysit him, except for my grandparents and aunts.
That being said, my mum has told me since I was a teen, “I never expect you to take care of Joey.” I understand that one day he will live in a group home, and I will be his legal guardian. I have been planning for this for decades. Knowing that my parents don’t expect him to move in with me has lifted a huge burden.
Growing up, there wasn’t a whole lot I could share with Joey. As an adult, there’s even less. We can’t get a drink after work or gossip about how crazy our parents are. We can’t go on double dates or rent a beach house, can’t compare theories on Game of Thrones or recommend a movie to the other.
So when I get to dye Easter eggs or put up the Christmas tree with him (Joey really likes the holidays), that’s my time to bond with him.
It may not sound typical, but to me, it’s the most normal thing in the world.