Supporting Siblings of Kids with Disabilities

As parents, many of us worry about how growing up alongside a sibling with a disability shapes our other children — not just in the long term, but in the small, everyday moments at home. Balancing the needs of a child with disabilities with those of neurotypical siblings can feel like an endless juggling act for parents. And while siblings of kids with disabilities often develop incredible empathy, flexibility, and compassion, they can also experience complicated emotions that are easy for us to miss.

For more information on supporting siblings, we spoke with Emily Holl, director of the Sibling Support Project and sister to a sibling with a disability; Jessica Richards, LCSW, child and family therapist; Diane Simon Smith, MFT, marriage and family therapist; Avery Zemlak, a college student whose brother has Smith-Magenis syndrome; and a few other experts and parents.

One Undivided parent, Jen, told us about an article she read in The New York Times called "Growing Up Alongside a Sibling With a Disability" that changed her effort to balance the needs of her 10-year-old son (who has cerebral palsy, ADHD, and dyslexia) with those of her 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," Jen says. "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 10-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; it doesn’t always look like what we think of as “sad.”

"This is a fear I’m already hyper-aware of," Jen says, "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."

Zemlak shares her experience growing up as the sibling of a brother with a disability: feeling like an outsider at times, the importance of still feeling special, and why raising neurotypical and neurodivergent children requires different approaches.

“Parents have so much on their plate,” Zemlak shares, “but any attention that they're able to dedicate to the neurotypical sibling I think is amazing because it can be a lot — [the sibling] can feel overlooked.”

How can we as parents make sure all of our children have their needs met? Here are expert tips and important things to keep in mind.

It’s essential to talk with our kids, both with the child 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.

Help siblings understand disability

“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.”

The point echoed by Holl, who expands on exactly why that gap in information opens up. Unlike siblings, parents often have the benefit of deep knowledge about their child’s disability through doctors, clinicians, and social workers, as well as the practiced ability to sort through accurate information online. Children are often not included in conversations with professionals, and may not consider the quality of online sources. Most young siblings rely on their parents to share information, but too often, for the best and most loving reasons, this exchange does not happen. When parents withhold information to protect a child from being upset, confused, or burdened, Holl says, it can unintentionally send the message that it’s not okay to ask questions or share feelings about the disability, and that it is a topic that's off-limits.

That information gap, Holl says, is exactly where misconceptions take root — including some startlingly specific ones. "What we see in young siblings, especially, is that there might be a feeling that they did something to cause the disability, or that they might ‘catch’ the disability," she says. She recalls facilitating a Sibshop years ago where a young girl believed she knew what had caused her sister's disability: she and her sister had been removing their nail polish together one day, and she'd decided the chemicals in the nail polish remover were responsible.

Holl shares why accurate information is so important and how parents can create safe, honest conversations about disability.

Holl offers a phrase she returns to often when training facilitators: "Children are excellent observers, but not always the best interpreters" — meaning they can see all the puzzle pieces of a situation without knowing how to assemble them into an accurate picture. Here are some ways to include children in conversations:

• Find and read all the books you can related to disability, especially those written for children.
• When and if you can, offer the sibling the opportunity to come along to doctor and therapy appointments, and to ask questions directly to medical professionals.
• Offer siblings opportunities to join in the small therapeutic tasks and other work you do with your kid with disabilities instead of always having 1:1 time.

Keep siblings included in the conversation

Jen says, "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 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."

Don’t be afraid to just talk as a family. Undivided Navigator Heather McCullough explains, “I remember distinctly having to have this one particular discussion multiple times, where we had to basically say, ‘We're a family, we're a team, and we look out for each other. And it doesn't matter who is the one needing the help, we're going to help them… But really breaking it down for them that we're a team and [their sibling] is not taking attention away from the family. We are just taking care of each other because that's what families do.”

Not sure how to start conversations? Undivided Navigator Gabi Gangitano suggests reading books or watching TV shows/movies with characters who also have your child’s disability, and letting the kids ask questions. Holl encourages parents to let the child lead these conversations rather than guessing what's on their mind: a child's actual question is often different from what a parent assumes they're curious about.

Help them understand their sibling’s needs

Zemlak says she was seven years old when her parents first sat down with her to talk about her brother's disability. Although he had been diagnosed when she was five, she had already begun noticing that his experiences and needs were different from those of other children.

Rather than being shielded from what was happening, Zemlak wanted to understand it. She accompanied her brother to therapies, got to know many of the professionals who worked with him, and observed the various supports that were part of his daily life. Looking back, she says that exposure helped her make sense of what she was seeing.

“Since that point, I've wanted to be very involved, very in the know, and very aware of what was going on,” she says. “Going to his therapies helped, because I've known he's had countless therapists and doctors and behaviorists over the years, and I would say I've known the vast majority of them.”

As she got older, those experiences helped her better understand why her brother received different kinds of support. Seeing him work with different therapists gave her a framework for understanding his needs and strengths in a way that felt concrete rather than confusing.

Now, Zemlak sees a connection between being included in those conversations as a child and her ability to participate in future planning today. As her parents begin thinking about long-term supports and what the future will look like for her brother, she wants to remain actively involved. “It's totally transitioned into the present because now, as my parents are planning for his future, since I'm the only other sibling, obviously there will be more responsibility on me one day,” she says. “I've known that for years. As that's starting to be thought about, I've been very involved in wanting to understand all of it and be involved in it. I honestly can't imagine not doing that. It's been such a big part of my life that it's helpful to be in the know.”

Siblings pick up on more than we realize — the pressure to be easy, the guilt of getting to do things their brother or sister can't, the frustration they're not always allowed to voice. Here's how to make room for the full, complicated range of what they're feeling, without asking them to hide any of it.

Notice how siblings may internalize expectations

Kids are constantly picking up messages about what behaviors are accepted, encouraged, corrected, or hidden — and siblings notice all of it. For example, masking often develops because autistic kids feel social pressure to appear more agreeable, compliant, or “normal,” especially from the adults and environments around them. Signs can include pushing through situations they dislike, seeming “fine” at school but melting down at home, or constantly talking about what they “should” or “shouldn’t” like or do. That pressure can affect siblings too.

Devon Price, PhD, social psychologist, clinical professor at Loyola University Chicago, and author of Unmasking Autism and Unmasking for Life, explains that because autism often runs in families, siblings can sometimes absorb masking expectations too — and may unintentionally pressure one another to conform. “If you see an older sibling bullying a younger sibling for doing something that steps outside of line, or seems like it's not conforming behavior, that could be a sign that your child has started to internalize some of the logic of masking,” Dr. Price explains.

Dr. Price says one of the biggest things parents can look for is whether a child seems embarrassed or ashamed of who they are, the things they enjoy, or what their body does or cannot do. Creating a home where kids feel safe to be themselves — without fear of judgment, teasing, or pressure to conform — benefits every child in the family.

Watch out for feelings of guilt

One common emotion many siblings experience is guilt — sometimes even what's described as "survivor's guilt." They may feel guilty for being able to do things their sibling can't, or hold themselves back from pursuing their own goals because of those feelings. Holl says guilt is a topic she could spend a full day talking about, but offers us the short version — helping siblings distinguish useful guilt from useless guilt. Useful guilt, she says, is the kind that changes behavior for the better: "I just smacked my brother's arm because I was mad at him and it hurt him. I feel bad about it, so I'm not going to do that again."

Useless guilt is different, and can be harder for a child to understand. Holl offers an example from her own life: the day she got her driver's license, she felt elated — and also a tremendous sense of guilt, because she knew her brother would never be able to drive due to his disability. "If I follow the reasoning through that process, I can try to decide if this is useful guilt — which helps or makes things better — or not. I got my driver's license, and I feel guilty because my brother won't be able to drive. But then where do you go from there? I did not do something to hurt my brother. There's no behavior change. I may think it’s unfair that I can drive and my brother cannot, but it's not something within my control, and it's not useful to feel guilty about it. Maybe what I am really feeling is sad, or angry, or disappointed." Her advice is to name the feeling and then actively reframe it. In her case, she realized that having a license actually opened a door to driving her brother around. The car became one of their favorite spots to hang out, listen to music, and sing together.

She adds one more piece that she says was personally helpful: remembering that a sibling with a disability usually wants their brother or sister to be happy too. "My brother was excited when I got my license, yes because I could drive him around, but also because he was genuinely happy for me — that I passed the test and did this thing that I wanted to do." Holl connects this to a broader caution about ableism: it's easy to assume a sibling with a disability is missing out or unhappy because they can't do something a neurotypical sibling does, when that assumption often says more about internalized bias than about how that person actually feels about their own life. "My brother really never had any interest in driving a car,” she says. "We have to be really careful about our assumptions about the quality of life of our brothers and sisters, because — what are we measuring that against?"

Richards echoes Holl, telling us that sibling support groups and positive messaging can be very helpful in processing feelings of guilt. “It can be really helpful to normalize that feeling, but also to see how other young people, how they're living their lives, how they're pursuing their dreams, how they're struggling with that, too. And while there's no magic words that remove guilt, I think messages [to a sibling] like, ‘You are valuable and important, and you have something to contribute, and gosh, what a shame it would be to not, not pursue that, not contribute in that way. You have these talents, you have these gifts. We all have different talents, we all have different gifts, we all have different challenges. We don't get to pick that, but we should do our best to be our best version of ourselves, whatever that is,’” is helpful.

Make room for the full range of emotions

It's easy to focus on what a neurotypical sibling can do to help, but supporting them also means making space for what they're feeling, including the parts that aren't easy to hear. A canceled beach outing, a meal cut short because a sibling is melting down, a missed milestone because the family's attention is elsewhere — these everyday disruptions are real losses for a child, even if they're nobody's fault.

Richards addresses a part of sibling support that's easy to overlook: making space for the hard feelings — frustration, resentment, disappointment — and what to do when things escalate into conflict. She emphasizes: "Those emotions are normal, those emotions are expected and typical, and it would be unrealistic to expect a child to not feel upset."

Beyond making space for hard feelings, Richards also offers practical guidance for the moments when things actually escalate and how to help siblings move toward repair afterward.

Holl points to a closely related dynamic: a sibling feeling frustrated, embarrassed, or upset by behavior they can't control or change — stimming in a grocery store, for instance, or a challenging behavior in public. Her guidance is to make room for both children's feelings at once rather than trying to resolve the behavior itself in the moment. "We might not be able to change the behavior that is upsetting us at the moment, but we can certainly walk alongside the child who is embarrassed by it, and validate it, and not make them wrong for feeling that way — because there's nothing worse than feeling embarrassed in a situation like that, then also feeling like it's wrong to feel embarrassed."

She says the same principle holds for any difficult emotion a sibling brings to a parent — guilt, anger, resentment, jealousy. "Siblings want to be heard and validated, and that is the most powerful way to support them. . . . Saying, ’I can understand why that was confusing or embarrassing, or fill-in-the-blank. I'm glad you shared that with me. It sounds like that experience was really upsetting for you.’ This lets them know that they've been heard and understood, and validates their feelings." She also encourages parents to let the child lead these conversations rather than guessing what's on their mind, because a child's actual question is often different from what a parent imagines they're curious about.

A note on "glass children”

We asked Holl about the term "glass child,” which has gained traction online but can land strangely for some families. Parents and siblings have increasingly reached for shorthand terms to describe the sibling experience, and Holl has thoughts on where they help and where they can mislead. The term "glass child," she explains, comes from a 2010 TED talk titled “Recognizing Glass Children” by a sibling named Alicia Maples, who grew up with two brothers with autism.

Maples described feeling like a glass child — not fragile, she clarified, since she considers siblings "strong as titanium" — but invisible: "When parents look to us, they look right through us." The term resurfaced and went viral on social media several years later, and Holl says it can now divide people. Some siblings feel the metaphor precisely captures their lived experience, while others don’t. Some parents feel the term depicts an adversary dynamic between parents and siblings. "I think the glass child metaphor captures one important facet of the sibling experience for some brothers and sisters, and not for all," Holl says, noting other siblings have reached for different metaphors entirely — like satellites orbiting each other.

In families where children have different support needs, daily life can include moments that require a lot of coordination, flexibility, and responsiveness from everyone. In those moments, parents are often holding multiple needs at once: supporting one child while also staying attuned to the experience of siblings in the home.

Sensory challenges

Stims are often used to self-regulate. Even if a child’s stimming does not pose any harm or distraction, siblings may still struggle with it at times. Sometimes, a child’s stims can feel overwhelming to brothers and sisters, especially when they are loud, repetitive, or happen constantly throughout the day. While we do not recommend trying to suppress a child’s stims, there are many strategies families can use to better understand stimming, support regulation, and help ensure that everyone in the household has their sensory needs met.

Supporting siblings doesn’t mean teaching them that stimming is “bad” or something that needs to be stopped. It means helping them understand why stimming happens while also making space for their feelings and sensory needs. Neurodiversity-affirming support means holding two truths at once: a child’s need to stim is real, valid, and often essential for regulation — and the impact on other people in the environment is real, too.

Dr. Allison Ratto, clinical psychologist at the Center for Autism Spectrum Disorders at the Children’s National Hospital in Washington, DC, as well as associate professor at the George Washington University School of Medicine, explains that this is an example of competing (or conflicting) access needs, where one child’s needs for regulation or accessibility can sometimes create friction with another child’s sensory or emotional needs. Rather than shaming the child who stims or expecting siblings to simply tolerate distress, families can work toward balance by creating opportunities for everyone to regulate. That might mean headphones, sensory breaks, quiet spaces, outdoor time, parallel play, or simply allowing siblings to step away and decompress when needed.

Stepping away to a safe space

Richards emphasizes that siblings benefit when there is clarity and predictability about what happens during more intense or emotionally charged moments. Not because anything is “wrong,” but because having a shared plan helps everyone know what to expect and where to go next.

As she explains, “I think it is often helpful to outline an expectation that if things are really hard and I let you know it’s time to be alone or some other way, that is a signal that the other child remove themselves from the situation, and that frankly can often be for a safety reason. That is an important practice to set up, whether that be sort of like a safe word or a phrase, and you talk that through — where would the child go? Do they go to their bedroom? Do they go to mom’s room? Do they go outside on the swing set?”

To support that time in a grounded way, Richards suggests building in simple connection points so that a child isn’t just “waiting out the moment” but has something steady and supportive to lean on while they’re elsewhere in the home. That might include reaching out to a trusted family member — like a quick FaceTime check-in while they’re in another room — or arranging in advance for someone familiar to be available if needed. As she puts it, you can even give that person a heads-up: “If needed, can you be available to be a FaceTime buddy while we’re de-escalating?” She emphasizes that these kinds of contingency plans work best when they’re thought through ahead of time, talked about openly, and adjusted over time as the family learns what feels most supportive.

What if all the kids are neurodivergent?

It's worth noting that this dynamic doesn't only show up between a neurodivergent child and a neurotypical sibling. Richards points out that families with multiple neurodivergent kids face a related but distinct version of this challenge.

She explains that the core approach is similar — parents still do their best to meet each child's individual needs — but the situation can become more complicated depending on each child's profile, especially if they might be able to understand the other siblings' areas of difference. At the same time, she notes these families may not carry the guilt-and-resentment dynamic to the same degree often seen between neurodivergent and neurotypical siblings.

One particularly tricky pattern she's observed is when siblings' sensory needs directly conflict with one another. She described one family's situation this way: "I definitely know families where one child's triggers are exactly the other child's special interests." Without a large home offering enough physical distance between kids, she notes that simple tools like headphones become essential.

She shares a specific example of this kind of negotiation: a child who was an avid piano player was initially resistant to switching to an electric keyboard with headphones, since he preferred the feeling of pounding on an upright piano. But because that level of sound was too much for his sibling to handle, the family had to work out a compromise so both kids' needs could be met in the same space.

Let siblings help

Research suggests that when siblings help with the education of a brother or sister with a disability, the outcomes are often good for both. In the Times article, Landman writes that her mother was ahead of her time because she enlisted Landman’s help in the care and “schooling” 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.”

Jen says, "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."

Avoid "parentification"

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.”

Holl frames the question of healthy involvement around choice. She notes that praise can backfire here in a subtle way. When parents celebrate a sibling for helping out — "Wow, you help your sister so much, you're an incredible sibling," — it's well-intentioned, but if it's not balanced with other kinds of recognition, it can quietly send the message that a sibling's worth is tied to how much caregiving they provide. "Healthy involvement means siblings having a choice — a choice to help that doesn't overshadow meeting their own needs, or blur the lines between parent and sibling, or tie the child's worth to being a helper," Holl says. Her recommendation is to recognize and celebrate siblings for their own talents, interests, and lives outside of the sibling role, in addition to the ways they help their brothers and sisters.

Zemlak tells us that growing up — especially as the older sibling — she often felt like she was in more of a parent role than a sibling role: “More often than not, I do kind of feel like a third parent, just because of where his mental capacity is, the things like he requires or needs help with still that I can definitely be there to support. But I think it's an interesting line that I've struggled with for most of my life — where is the balance? My parents have always done a really good job at making me feel like it's not my responsibility.”

Even with that reassurance from her parents, Zemlak still finds herself stepping in: “I've always wanted to help out. If my parents want to go out to dinner, finding a babysitter for my brother can sometimes be difficult. I go to college out of state, but when I'm in town I love to try and spend as much time as possible with my brother in general, but also in a way to kind of help them and give them a break since he's pretty responsive to me.”

Set “equal” expectations

One of the biggest challenges for parents is balancing each child's unique needs and helping siblings feel equally valued — especially when it comes to behavior, household responsibilities, and contributing to the family. But in families of children with disabilities, "equal" doesn't always mean identical. A child who uses a wheelchair, has limited fine motor skills, or has significant behavioral or medical needs may not be able to complete the same chores or meet the same expectations as their sibling. The goal is to help each child contribute in ways that match their abilities while making sure every child feels valued and accountable.

Smith explains, “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 Undivided), 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.”

Connection doesn't have to be a big production — sometimes it's ten focused minutes, a grocery run, or dinner with no devices. Here's how families are finding small, consistent ways to nurture the bond between siblings, and between parents and each of their kids.

Make time for siblings to connect with parents

Undivided 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 live chat on anxiety. “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 10 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 10 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.”

Holl echoes this almost exactly, and says the encouraging part is how little it actually takes. She suggests parents look for small, consistent windows — 20 minutes after a sibling with a disability goes to bed, for instance, spent on a puzzle, a show, or just talking. Errands count too. "Saturday mornings, my dad would take me grocery shopping with him, which sounds dreadful now as an adult who really does not like grocery shopping. But as a kid, it was like my one-on-one time with my dad, and we made a game out of it. Also, I usually got a donut as part of the gig," Holl chuckles. "It was an errand that he had to do anyway, and he turned it into an opportunity for special time for both of us."

Create opportunities for bonding and shared family interests

Smith says 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?'”

Staying connected as a family can help everyone cope with the challenges. McCullough tells us that her family always tries to find little ways where they can interact and do things as a family, such as going to theme parks — something other than medical stuff together. For Gangitano, she prioritizes having dinner together as a way to foster connection. “Food is a huge thing that brings both of our extended families together, so we do the same in our home. We don't watch TV while eating and just chat with no devices.” Another tip she shares is that siblings sharing bedrooms can help foster bonding as they learn how to help each other, clean together, and participate in nighttime chatting.

Involving siblings in what’s happening with each other can help foster bonding. For example, you can let them push the stroller as well as watch videos, play music, dance, or read together. “We try to find little ways where they can interact and we can do things as a family,” McCullough says. “Every family is different; you've just got to find ways, no matter how small, to implement some kind of bonding. It could be drawing a picture and decorating the hospital room, sending a gift or a postcard, reading a message, doing a video chat. There are a lot of different little ways, if you have the ability to really think about it — sit down and pull it apart. What could make them smile today?” If the other kids are older and/or out of the house, Gangitano likes to call, text, and check in often.

Future planning doesn't have to start with estate plans or adult services. It can begin with everyday conversations that help siblings feel informed, included, and valued.

Bring siblings into the planning room

Holl draws a direct line between everyday decisions and big-picture future planning, treating them as part of the same continuum. She points to IEP meetings as a low-stakes place to start. Even a sibling who isn't at the meeting can be asked beforehand, "Your brother's going to have a new teacher next year. What do you think is important for that new teacher to know about him?" Her reasoning is that siblings often recognize strengths in their brothers and sisters that parents — who can be protective in the best possible ways — sometimes don't. "Siblings, I think, are sometimes a little bit more open to this idea of the dignity of risk," Holl says. "Like, well, he's never done that before, but I know he really wants to learn."

That same openness matters even more for the larger transitions, Holl says, such as aging out of the school system into adult services, or the eventual point when parents can no longer provide the level of care they once did. Families who have already practiced talking about smaller decisions tend to find those bigger conversations far less daunting. "It's much easier when those conversations are just the next natural step in planning for the person."

Holl explains why including siblings in IEPs, future planning, and family discussions can build confidence, advocacy skills, and stronger family support.

Plan for the future — without making siblings the plan

When Don Meyer, the creator of Sibshops™ (more on Sibshops later) and founder of The Sibling Support Project, began training parents and professionals more than four decades ago, he emphasized that one of the biggest issues that siblings face is their parents’ lack of adequate plans for the future of their child with disabilities. Several years later, the national Sibling Leadership Network cited that over 75% of adults with developmental disabilities in the U.S. live at home, and at least a quarter of them live with parents over the age of 60.

It’s therefore not surprising that today many adult siblings anticipate taking on a caring role. While it's important to include siblings in planning, experts caution against assuming they will one day become the primary caregiver. Some parents assume or hope that their other children will take on the role of caring for a disabled sibling after they’re gone. But experts note this can place siblings in a difficult — and sometimes unrealistic — position. “It’s important for parents to know that even when a sibling says, ‘Oh yeah, I definitely want to be there for my brother and my sister,’ that their life circumstances can change,” says Michelle Wolf, executive director of Jewish Los Angeles Special Needs Trust (JLA Trust).

Siblings grow up and build lives of their own. By the time a parent is no longer able to provide care, they may have families, careers, health needs, or other responsibilities that make it hard to take on the full scope of managing a sibling’s care or finances.

Rose van Wier Hein, executive director of Golden Heart Ranch, says that in her experience, “almost never” do siblings want to take on the responsibilities of their disabled sibling’s care. “I still see parents that say, ‘Well, they don’t have a choice.’ And that’s not right either. You know, that puts a tremendous burden on that sibling and eventually their partner. It changes their whole life. They just took on something that is lifelong.”

For example, when it comes to special needs trusts, parents often think that a sibling should be the trustee — the person in charge of coordinating and helping to pay for all the hands-on care or living arrangements and other bills that need to be paid — but this is not recommended because it is a major responsibility and can put them and their disabled sibling in an uncomfortable dynamic. But siblings can serve as a “trust protector,” a role that allows them to be a liaison and an advocate for the beneficiary, without having the legal responsibilities of a trustee.

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. With thoughtful planning, families can ensure a child has the support and resources they need throughout their life, while allowing siblings to remain exactly that — brothers and sisters.

Holl offers a specific phrase she encourages parents to adopt: give siblings "the right to refuse." Many parents assume their other children have no interest in being involved in future planning — and in her experience, that assumption is almost always wrong. "Just because a sibling is not talking about it or expressing their questions or concerns doesn't mean they're not thinking about the future," she says. "In the back of most of our minds, it is a thought: what will happen, who will care for them, what role will I play." When siblings get to choose their own level of involvement along the way, Holl says, they grow into the advocate or caregiver role far more comfortably — and far more powerfully — than if it's simply assigned to them.

As Zemlak shares, “My parents have always made it super clear that it would not be my sole responsibility, that there are other people — family members, family friends — in place to help. There are things that they've set in place to help and make sure that it doesn't just fall on me. . . . which I'm really grateful about. And I think that's made the biggest difference: they are actively working now, even though [my brother is] only 16, so that there are things in place. That would be my biggest piece of advice to parents.”

Zemlak shares her perspective on future caregiving, why early planning matters, and how her parents included her without making it feel obligatory.

Don't assume you know what everyone wants

One of the biggest lessons experts share is that future planning works best when everyone has a voice — including the person with the disability.

Holl's own family learned this lesson directly. She had always assumed her brother would live with her once their parents could no longer care for him — until they actually sat down and talked about it. "He was nice, but he was very certain that he did not want to live with me," Holl says, adding that this surprised he:. “This was my whole life plan." Her brother, it turned out, wanted his own apartment with support, not a life folded into hers. She describes a similar moment from a future-planning workshop she facilitated with families in Texas. Holl recalls one mother who assumed her adult son would stay in the family home indefinitely, an idea that brought her comfort. To her surprise, her son, who was also participating in the workshop, had an entirely different, well-considered plan. He wanted an apartment of his own, because he had no interest in mowing the lawn or maintaining a house.

“It’s helpful for parents, siblings, and the person with a disability to be able to sit down and talk about ideas and options while we have the luxury of all being together to make plans to make those dreams come true," Holl says. Often, families are aligned on wanting the same outcome — safety, happiness, independence. — but must get together to talk through the options for how to achieve it.

Help siblings build a relationship that lasts

While future planning is important, Richards encourages parents not to let it become the defining story of the sibling relationship. Long before siblings may ever discuss caregiving, they're building something just as important: a friendship.

Richards zooms out to the longer arc of sibling relationships, noting that in some families, the connection between siblings can extend well into adulthood — not only emotionally, but sometimes in practical ways as families navigate long-term planning and systems of care. She acknowledges that while siblings should not be expected to take on a primary caregiving role, there are often ways they remain adjacent to support structures over time, whether that looks like staying in touch with service coordinators, helping communicate information between systems, or eventually taking on roles such as executor or a key point of contact.

At the same time, she is careful not to let that practical reality become the defining story of the relationship. She emphasizes that it’s important not to frame the sibling bond in a way that centers obligation or burden, because that can overshadow everything else the relationship can be: “I wouldn’t want to just set up a sense of burden and responsibility, but also that they have some opportunity to connect around something that’s joyful and has nothing to do with needs and care and things like that.”

For Richards, what matters just as much as any future planning is the everyday texture of the relationship itself — the small, shared moments that exist completely outside of care, responsibility, or systems. She encourages parents to actively look for these points of connection, especially in childhood when siblings may seem very different from one another on the surface. Even when interests don’t obviously overlap, she suggests there are often small “glimmers” that can become meaningful over time if they’re noticed and nurtured.

Zemlak's relationship with her brother reflects exactly that mix — practical patience alongside real, evolving friendship. She describes their dynamic as heavily dependent on his mood, which can shift for weeks at a time: "Sometimes I can totally get through to him and everything's okay, and then other times he essentially doesn't want anything to do with me." She's learned to read those moods and adjust accordingly, often choosing to step back rather than push. But she's also noticed changes as they’ve grown older. Once she started driving, simple outings — a park, ice cream, dinner — became something they could do together.

Richards describes how these can be simple, everyday connections, like both enjoying a game such as Tetris, watching old episodes of The Office together, or even making a shared habit out of something like trying different sushi restaurants. Over time, she notes, these can start to feel like their thing. And while she acknowledges there is often a practical layer to consider in the long term, she emphasizes that it’s just as important not to lose sight of what holds the relationship together emotionally. As she puts it, “There’s the practical piece that needs to be addressed in the long term, but we don’t want to neglect the friendship and that real relational connection.”

Help each child become their own person

Parents often hope their children will have a close relationship as adults, but that bond doesn't happen by accident. It grows when each child has the space to develop their own interests, friendships, and identity. Supporting siblings as individuals — not just as part of the family dynamic — can strengthen their relationship today and help them show up for one another in the future.

Holl shares the one fact she most wants parents to sit with: the sibling relationship is typically the longest relationship in a person's life, often lasting 60 to 70 years. This is longer than most marriages, friendships, and even the parent-child relationship itself. "It's very important for parents to consider," she says. "We want to be really intentional about making sure that siblings have the information and support they need to bring their best selves to that relationship."

As for what actually builds a strong adult bond, Holl's answer centers on individuality rather than closeness for its own sake. "I think the key is really giving each child the space to be who they are, and to the best of your ability, to meet the needs of both individuals with their own needs and own lives. Encourage each child's development and understand that those paths may, and probably will, look different — and be along for the ride on those two different paths and experiences.”

She credits her own parents with making sure she had room to pursue her own interests — theater, sports, travel — while her brother had his own full life, including years in the Special Olympics. "I always had space for him because I was fulfilled in other areas of my life. Likewise, he was off doing his things," she says. "We had more to bring to that relationship to each other as siblings, and that was ultimately what enabled us to be supportive to each other as adults." She's candid that this doesn't mean conflict disappears. "We do know how to press each other's buttons, and there are times when we can't stand each other. . . .that's pretty typical of siblings. But I am the first person who will advocate for him, so that he has what he needs. And he always supports me in his own ways."

She also reframes the common parental hope that an adult sibling will eventually step into a caregiving role. In her view, some version of that role is close to inevitable, since siblings usually outlive their parents. But how a sibling arrives at that role matters enormously. "If this feels like an obligation that is forced upon us, and our whole life has been centered around caring for our brother or sister, there will likely be some resentment there," Holl says. "But if we come to the role of caregiver or advocate as an adult who has a full life, who has been able to experience the world in ways that are meaningful to them, we just have more capacity to give to our brothers and sisters."

Her advice to parents: invest in who your other children are becoming as individuals: “I encourage parents to really, really look at your other children and help them grow and develop into the people they want to be, because those are the people who are going to show up in that caregiving role in a way that is much more ready, willing, and able; in a way that's much more effective."

Beyond the challenges

Most of the conversation around sibling experience understandably focuses on the hard parts, but Holl is quick to point out that the same parallel she draws between parents and siblings runs through the good parts too. Parents and siblings alike often find unexpected community and advocacy opportunities. For example, meeting other families, speaking before legislators about disability services, or even being inspired to respond to bullying or teasing. “Those kinds of things can be really good opportunities for advocacy, right? Maybe that means we should think about doing a disability awareness day at school, and helping not just the kids who are picking on the child with a disability, but helping everyone understand more about disabilities.”

Another strength she points out is humor. "Families of people with disabilities are definitely no strangers to humor," she says. "We sometimes have to laugh at the absurd things that the world throws our way." She adds that humor can help siblings build a stronger bond and, in many cases, become a healthy coping strategy.

No one else quite gets it like another sibling does — the good parts and the hard parts both. From Sibshops to peer support groups, here's where neurotypical kids can find other kids who share the experience, and where parents can find a little room to breathe, too.

Sign up for support groups and classes

So how can we better support our neurotypical kids? Smith — who has a son with cerebral palsy who passed away 17 years ago, and also 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.”

McCullough recommends signing up siblings for a class that hospitals offer on bringing home a new sibling. They learn things such as how to help give the baby a bath, change a diaper, or hold a bottle. Even if they don’t get to fully do those things at home, you can always adapt. For example, instead of actually changing a diaper, they can bring you a diaper when you need one or hold their sibling’s hand while you change the diaper.

Zemlak has noticed there's no one right way to be a sibling: some kids are deeply involved and open to talking about it, others aren't, and both are okay. Her advice is to find whatever makes you most comfortable. For some, that means seeking out peers who understand — even within the disability community, she points out, sibling experiences vary widely, regardless of shared diagnoses. "I'd urge all siblings to try [a support group] at least once and just see how it makes them feel," she says. If it doesn't feel right away, she adds, that's okay too — younger siblings especially might want to revisit the idea a few years later, but “it’s definitely worth trying just to feel that support.”

She explains that while she feels lucky to have supportive friends, most of them don't have siblings with disabilities, so they can't fully relate: "They're not really in the same spot, having to think about all these things all the time — it's very different. Being able to form those friendships and connections, or even just be in a space where everyone shares that experience, is really beneficial."

Sibshops™

The Sibshops™ program is probably the first place parents can look for this kind of support for their neurotypical kid(s). As Holl tells us, "The Sibling Support Project was founded in 1990, and it's the first national organization dedicated entirely to supporting siblings of people with support needs — that includes people with developmental, health, and mental health concerns. And we are best known for Sibshops, which are really fun workshops for school-age brothers and sisters of kids with support needs. The first Sibshop was actually launched in 1982, before the Sibling Support Project was created, by our founder, Don Meyer. Don really wanted to create a fun, playful environment for young siblings to connect, learn, laugh, and play.”

Now, you can find Sibshops all over the world.

Holl is emphatic on one point: Sibshops are not therapy. "They're really a recreational program for siblings — not a form of therapy, group or otherwise," she says. Although there are therapeutic elements built into Sibshops, at their core is the chance to be around other kids living a similar experience who can truly understand. "Sometimes without even having to say a word," says Holl. Sibshops also lean heavily on peer support rather than adult instruction. "We do not position ourselves as the experts in the room," Holl says of the people who facilitate Sibshops. "We really set the stage for the kids to support each other, because siblings have a lot of wisdom if they're just given the opportunity to share it with one another."

She adds that Sibshops are spaces where a sibling can feel the spotlight shine fully on them — "I have space, I can take up the space" — and they can shed any day-to-day responsibilities of helping care for a brother or sister with support needs. 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, parent, non-attorney education advocate specializing in inclusion, and member of Undivided’s editorial specialist team, tells us that both of her neurotypical kids participated in Sibshops programs for several years. 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 she 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. They 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.”

Books

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

• Living with a Brother or Sister with Special Needs: A Book for Sibs — Written by Don Meyer for younger children, this book addresses the questions children ask that don’t have easy answers, such as: What caused my sibling’s disability? Could my kids have a disability too? What will happen to my sibling if my parents die? Highly recommended as a resource for siblings, parents, teachers, and more. For ages 3–8.
• The Sibling Slam Book: What It's Really Like To Have a Brother or Sister with Special Needs — This “slam book” features unedited answers from 80 teens from America and abroad about their lives, experiences, and feelings on growing up with a sibling with disabilities. For ages 11–15.
• Views From Our Shoes: Growing Up with a Brother or Sister with Special Needs — Forty-five fantastic essays written by children, for ages 9–15.
• Thicker than Water — an essay collection by 39 adult siblings on how their lives have been indelibly shaped by their relationship with a brother or sister with disabilities. For teens and up.

Here are some other books and resources:

• Billy's Sister: Life When Your Sibling Has a Disability by Jessica Leving — Based on the author's real-life experiences, this children's book explores how siblings of kids with disabilities are special, too.
• Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters by Brian Skotko and, Susan Levine — The first book written exclusively for teens with a brother or sister with Down syndrome.
• My Brother Charlie by Holly Peete and Ryan Peete — A heartwarming story about a boy who happens to be autistic, based on the author’s son, who has autism.
• Rules by Cynthia Lord — A 12-year-old girl whose life revolves around her brother with autism as she creates rules to manage his behavior, but ultimately begins to question what “normal” really means.
• The Sibling Survival Guide: Indispensable Information for Adult Brothers and Sisters of People with Disabilities by Don Meyer and Emily Holl — focuses on the topmost concerns identified in a survey of hundreds of siblings.
• The Surprising Ways That Siblings Shape Our Lives by Susan Dominus — Emily Holl recommends this Times article on how siblings shape our lives.
• “Navigating Being a Sibling of Someone with Disabilities” by Allie Hinds at TEDxMontanaStateUniversity — In this video, Allie talks about her experience being a sibling of someone with disabilities. She touches on the feelings of guilt and the pressure to mature, and how that creates growth.

Sibshops

You can find a sibling support meetup through the following organizations:

Southern California:

• Club 21 Sibshops are for kids 8–12 and meet on Saturday mornings in Pasadena.
• Lanterman Regional Center hosts Sibling Saturdays for kids ages 8–14 in Pasadena as well as virtual Sibshops on Wednesdays.
• 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.
• Down Syndrome Association of Orange County hosts Sibshops in the Irvine area every other month.
• Common Ground Society hosts sibling and caregiver meetups in the Santa Rosa area.
• Alpha Resource Center in Santa Barbara has meetups for siblings ages 8-13 every other month.
• Adrian's Place Foundation in Santa Monica "hosts workshops and discussions that address family challenges, provide new educational tools, and strengthen support for siblings and parents."
• In Redlands, check out "Thrive Pals" Sibshops hosted by Thrive Pediatrics.
• Our Villages provides in-person Sibshops in Torrance and virtual meetups for ages 6-15.
• Online Communities for Brothers and Sisters. The Sibling Support Project hosts the largest and longest- standing social networking groups for siblings and other family members, including SibNet, SibTeen, Sib20 and GKSN (Grandparents of Kids with Special Needs).
• MIND Institute Sibling Support-In-Person and online. This program is for kids and teens (ages 7-17) who have siblings with autism, attention deficit hyperactivity disorder (ADHD), Down syndrome, Fragile X Syndrome, or other neurodevelopmental conditions. Led by Certified Child Life Specialists (CCLS), these sessions are guided by experts in child development, coping, trauma, and family dynamics. T hevirtual sibling groups are for children (ages 7-13) who have a sibling with autism, ADHD, fragile X syndrome, down syndrome or other neurodevelopmental conditions. To register, visit the UC Davis MIND Institute Events page under the Support Groups tab.

Central California:

• Valley Children's Hospital hosts monthly sibling meetups for ages 7-12 in Madera.
• Family Resource Network hosts events for families in Amador, Calaveras, San Joaquin, Stanislaus and Tuolumne counties.

Bay Area California:

• Care Parent Network hosts regular events in Concord.
• Support for Families provides support groups and workshops in multiple languages in San Francisco.
• Mill Valley Recreation hosts monthly Sibshops for ages 8-18 on Saturdays.

Online:

• California Sibling Leadership Network has virtual Sibshops for multiple different age groups.
• SibTeen is a Facebook group for adolescent/teenage siblings.
• Sib20 is a Facebook group for siblings in their 20s.
• SibNet is a Facebook group for adult siblings.

For Sibshops beyond the above locations, find a Sibshop near you online. Want to facilitate a Sibshop on your own? Find out how!

Want to hear more from siblings themselves?

Previously, Undivided co-founder 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.