by Jennifer Alise Drew

 

The takeaway:

  • Spend a few immersive minutes each day with your neurotypical kid(s) in a way that makes clear you’re “not always running off to attend to the highest-needs member of the family.”
  • Talk to your kids about disability: read books about it (find a great list at the bottom of this article!) and involve them in what you know, how you feel, and the work you do together as a family.
  • If your child is old enough, find a Sibshops support group in your area. 
  • Nurture sibling relationships by creating a family routine that is built around a shared love or activity.

 

Two brothers wearing green T-shirts, the older with his arm around the younger, stand on a dock looking out at a pond or lake.
Two brothers wearing green T-shirts, the older with his arm around the
younger, stand on a dock looking out at a pond or lake.

A few months into the pandemic, I read an article in the New York Times called Growing Up Alongside a Sibling With a Disability that has stayed with me over the intervening months. As the pandemic drags on with seemingly no end in sight, so has the effort to balance the needs of my oldest son (who has cerebral palsy, ADHD, and dyslexia) with those of my two neurotypical kids, who are younger and needy in their own ways. 

My five-year-old is particularly attuned to the imbalances in how my attention gets meted out. His older brother gets my exclusive attention (whether he wants it or not) several times a week for therapies in addition to the little everyday things, from getting around the house to toileting to getting on or off his clothes and shoes. His little sister is in the two-year-old mom-attachment phase, so she’s basically a bodily extension of me. Then there’s the grindingly familiar routine that family dinners have become: the monotony of cooking and cleaning aside, our ten-year-old is likely to hold forth about whatever subject is on his mind (and it’s often an interesting question that delights the adults, such as Why do our cells act like cannibals when we’re sick?), causing the five-year-old to ask, Why does he always get to talk and I don’t? 

The author of the Times article, Keren Landman, is a physician who grew up alongside a brother with autism. In addition to telling her own story, she discusses several studies on the mental health of siblings of children with disabilities. On the one hand, we know that siblings of kids with disabilities develop better adaptability, empathy, and tolerance; on the other, research shows that they also experience a higher incidence of anxiety and depression. Especially in younger kids, depression can show up in ways we don’t expect — as one neurologist told me, “Depression in kids doesn’t always look like what we think of as ‘sad.’” This is a fear I’m already hyperaware of, especially for my middle kiddo; he tends to disappear into independent play, and I sometimes worry about what he has internalized that he’s not sharing.

 

Fill their pockets

Just before the Times article came out, I had the opportunity to ask Dr. Matt Biel, Chief of the Division of Child and Adolescent Psychiatry at Georgetown University Hospital, about sibling care during a Special X live chat on anxiety during the pandemic. (We were only a few months in! What did we know of anxiety then??) Newly reeling from having all three kids at home all the time, and seeing the fallout for my then four-year-old, I asked for advice.

“You’ve got to find the moments when you can attend to just one kid,” Dr. Biel said. “Take advantage of the fact that a four-year-old’s sense of time is very loose. Spend ten minutes in which you’re focused on just him: time that’s intensively focused and fun and immersive — the kid’s going to walk around with full pockets after those ten minutes. Make it explicit that you’re not always running off to attend to the highest-needs member of the family. Even if it’s very brief, I think it can be very powerful.” I thought about those full pockets for months, hoping Dr. Biel was right, and sensing, when I was able to take his advice, that he was.

In the Times article, Landman writes that her mother was ahead of her time because she enlisted Landman’s help in the care of her brother with autism, believing it would benefit both of them. As an adult, Landman asked her mother how she’d managed. “You were the teacher’s assistant,” her mother told her. “I was trying to make you feel important.” I’ve had the same thoughts off and on since my middle kiddo started helping out at age two or three — he would run to pick something off the floor for his brother or mimic whatever chore I was doing. Fast-forward a few years and he’s now the only one of his siblings who can dress himself independently, go to the bathroom independently, get his own water, fetch the forks, and so on. So when we’re in the particular hell that is trying to get everybody to bed, or worse, out of the house, it’s usually him I end up yelling at because he does everything possible to avoid putting on his own shoes and getting to the car on his own two feet — because he can.

Emily Holl, who is the director of the Sibling Support Project — an organization that runs the well-known Sibshops program (more on that below) — tells Landman that in her practice, she finds the kids who carry the least resentment toward their siblings with disabilities tend to live in families who “set equal expectations of all siblings as best they can — with respect to behavior and chores, for example.” But how do you give equal chores to a child who can’t walk, for example, or has trouble with fine motor tasks, or behavior, or any other number of things?

Here’s what marriage and family therapist Diane Simon Smith said when I reached out for her advice on the sibling subject: “It’s an attitude about how we value the achievements of each child, and setting expectations for each one given their various challenges and expectations. But it’s never going to be equal, especially when one child has huge behavioral issues or big medical needs that tend to capture the focus of the family.”

If you’re familiar with the work and workshops that Smith runs (not to mention the live chat she held with Special X), you’ll know she is the sort who speaks about things as they are. “Some children may not be able to manage their behavior in any way because of the extent of their disability, and the other child can feel it’s not fair,” she says. “And it isn’t fair, in a sense — so you need to have a conversation about what’s fair and what’s not fair. The other child wants their mom’s attention and it doesn’t matter that their sibling is in the hospital, or whatever it is that takes their mom’s attention away. That’s a natural and normal longing.” 

 

Have open conversations and include the whole family

It’s essential to talk with our kids — both with the kid who has the disability about what their disability is and what it means so that they learn to accept and embrace it, and with their sibling(s) about the very same. It’s also hard to get right. “Sometimes people can be reluctant to fully talk about what their disabled child’s challenges really are,” Smith says. “So they use euphemistic language, particularly with children who have invisible disabilities like autism, and especially if they’re more mildly affected. There’s so much reluctance to talk about labels — but children make up what they don’t know. I’ve heard children say really sad things about what they assumed. They believed they were responsible for their sibling’s disability, that they were bad in some way, or that it happened because they were born — a lot of fantastical thinking — and really, we ought to know better because as parents, we do this too. We are meaning-making beings, and sometimes we’re off the mark by a lot.”

This point is echoed by Emily Holl, who points out in the Times article that while parents have the benefit of deep knowledge about their child’s disability, the children are often not included in those conversations, which can prompt their imaginations to run wild. “The first thing is to recognize that the sibling experience parallels the parents’ experience,” Holl says. This means that without adequate, age-appropriate information, a child might assume that “if you can catch your brother’s strep throat, why wouldn’t you be able to catch spina bifida?” So find and read all the books you can. When and if you can, bring the sibling along to doctor and therapy appointments. Let them join in the small therapeutic tasks and other work you do with your kid with disabilities instead of always having 1:1 time. (Just imagine the fun: PT for the whole family! Yes, I’m being sarcastic — but having done this, I can say it’s not as terrible as it sounds.) 

Smith, who read the same Times article, agrees with Holl that the greatest factor in how a child will interpret their sibling’s disability is how their parents respond to it. “One of the things that the Times article touches on, and that I talk about with families, is that the parents’ focus, attention, and attitude toward the child with disabilities really sets the tone for the children in that family,” Smith says. “It’s essential to allow your kids a full range of expression of emotion. When families don’t allow siblings to talk about how much they can’t stand their sibling sometimes, to allow them to express their fears, dislikes, nuisances, overwhelm, whatever it is — that doesn’t work. As a parent, we have to be really open and able to hear even the hard stuff. It’s also important to be open about the fact that as parents, we struggle too.“

As we know, involving kids in a family’s daily work is both necessary and acutely challenging when also caring for a family member whose needs are greater (and sometimes louder) than everyone else’s. Landman reckons with this in her article, too. “‘Parentification,’” she writes, “might seem like a positive outcome for parents — a good kid is one who takes some of the burden off her parents.” But it can come at a substantial cost, and the consequences are sometimes not small. Landman’s own parentification, she says, “most likely fostered my disinterest in having children. I’ll never forget cleaning up the bloody shards of glass my brother left after breaking a bathroom window with his face during a tantrum. Today my eyelid twitches when I imagine caring for anything with more needs than a goldfish.” 

 

Make sure everyone feels supported (yes, you too!)

So how can we better support our neurotypical kids? Smith — who had a son with cerebral palsy who passed away seventeen years ago, and has a 32-year-old son with fragile X syndrome — says that having a support group for herself has always been incredibly important, and it can be equally beneficial for children. “However much we need support as adults,” she says, “our kids can also benefit from meeting peers who share the same kinds of language and experiences.” 

The Sibshops program is probably the first place parents can look for this kind of support for their neurotypical kid(s). Don Meyer created the first Sibshop in 1982 when he realized there was no play-based support model available to siblings. Now, you can find Sibshops all over the world. The organization describes these meet-ups as “pedal-to-the-metal events” where kids meet other siblings, ”talk about the good and not-so-good parts of having a sib with special needs, play some great games, learn something about the services their brothers and sister receive,” and again, have fun. “We are unapologetically playful,” Holl says.

Karen Ford Cull, a fellow parent and member of the Special X content team, tells us that both of her neurotypical kids participated in Sibshops programs for several years (pre-COVID). She says of her younger son, “I think he enjoyed the special attention of me taking him to the meetings by himself.” She adds, “I have no idea what happens there — what happens at Sibshop stays at Sibshop!” Cull had attended a Sibshops training in 2014, and was struck by the fact that many of the adult sibling presenters said they wished they’d met other children like themselves when they were kids. She says the training was a “genuinely enlightening experience. I am certain I learned more from the panelists than all the behavior classes and parenting books I’ve ever tried. The sibs ranged in age from young twenties to late fifties; all were either caregiving professionals or training to be one. All were close to their sibling and had a loving understanding of their parents, and yet all of them could admit to times when they felt neglected because of their sibling’s needs. Middle school seemed to be the most common time.”

A survey of Sibshops participants bears out how important this peer relationship can be. According to the study, which was conducted by the University of Washington, over 90% of the siblings who participated said that Sibshops had a positive effect on their feelings for their siblings; more than two-thirds said they learned coping strategies there; and 75% felt that the Sibshop experience affected their adult lives. Smith adds, “It’s the same benefit I got as a new parent of a child with enormous needs: to not feel alone in this. At Sibshops, the kids do things like interview each other and ask questions, such as, What are your strengths and weaknesses and what are your brother’s? You can begin to normalize that each of you have both, and allow kids to talk about how their sibling drives them crazy in a playful way.”

Which brings up another point: how we manage our time as families. “One of the things I hear a lot is that parents struggle with saying, ‘We’re going to leave the child who has more extraordinary needs at home today, and we’re going to go on an outing, just you and me,’” Smith says. “It’s okay to spend time with just the other children sometimes, to give everybody a bit of a break from the extra attention and work that the child with disabilities may require. It doesn’t mean they have to be left out all the time, but it’s important to take a break, because depending on the sibling’s disability, it can be pretty isolating.”

 

Nurture healthy relationships

Spending quality time together as a family, of course, is equally important. Holl says that the second thing she’s observed in her practice that bolsters siblings’ relationships and resilience is establishing “a family life that revolves around something other than the disability, whether it’s a shared activity like camping or music, or an organization or faith community in which the whole family can participate.”

Smith tells me she saw this point come to life on the show American Idol. “I don’t usually watch American Idol,” she says, “but I was told there was a woman in a recent batch of contestants who has a brother with fragile X syndrome. Her brother joined her on the segment, and what stood out is that her whole family shared a real passion and interest in music: their identity was built around being a musical family. This young woman’s expression of her appreciation for her brother was coming from a healthy place — she’d clearly been able to shine in a healthy way without taking anything away from her brother. You had a sense that she feels she can live her life free of the expectation of taking care of him, but that she wants to stay connected with him. It doesn’t get better than that.”

She continues, “Healthy relationships like that come in part from having conversations with children as they get older. You want to nurture the relationship. I’ve been talking with a lot of families whose children are adults now. What parents want to know is, What does the transition look like in terms of my child having the community support around them so that when I’m not here, they’ll have the support they need?”

This is a point that Sibshops’ Don Meyer really emphasizes in his trainings: one of the biggest issues that siblings face is their parents’ lack of adequate plans for the future of their child with disabilities. In fact, the Sibling Leadership Network found that over 75% of adults with developmental disabilities in the U.S. live at home (at least a quarter of them living with parents over the age of sixty), so it’s not surprising that many adult siblings anticipate a caring role.

It’s essential to include the whole family in planning for the future: learn about what social services and supports are available, and keep an open dialogue about the kind of life we can envision for everyone involved. “It can be an excruciating conversation, but siblings should be a part of it,” Smith says. “Sometimes siblings have a different perspective — they may have an awareness of their sibling that we can’t really see as parents. For instance, a sibling might say, You know, I think they can really do that, while as parents, we tend to hold back and be protective. Our children are the ones who will be here longer, so it’s important to include them in these discussions.”

 

In Los Angeles, you can find a Sibshop meetup through the following organizations:

  • Club 21 Sibshops are for kids 8–12 and meet virtually every second Saturday of the month.
  • The Sandy Feet Initiative in Orange County holds events for siblings ages 7–13, including monthly meetups at Children’s Hospital of Orange County as well as beach clean-ups, weekend workshops, and week-long camps.
  • Lanterman Regional Center is also hosting monthly Zoom meetings for kids ages 8–14.
  • Want to facilitate a Sibshop on your own? Find out how!

 

Diane Simon Smith recommends the following books for siblings from the Sibling Support Project:

And be sure to check out Special X’s curated list of books, TV shows, and more for budding self-advocates that you can explore with all your kids. 

 

Want to hear more from siblings themselves?

Last year, Special X CEO Jason Lehmbeck interviewed several siblings for his podcast, Who Lives Like This?!, recorded alongside fellow parent Elizabeth Aquino. One episode features Elizabeth’s son Henry and his college friend Toby, two young men who grew up alongside siblings with disabilities. We highly recommend it, as well as a second episode featuring Clio, a young woman who is also the sibling of a child with a disability.

 

Other news