For all the talk about parents, teachers and therapists, siblings will likely spend more time long-term with an individual with a developmental disability than anyone else.

They will serve as playmates, rivals, confidants, advocates and ultimately caregivers in many cases over the course of a lifetime. But what does it mean to be a sibling in the extraordinary circumstances that a developmental disability creates? And what should be expected of these often forgotten members of the family?

In this installment of Scoop Essentials, Don Meyer, director of the Sibling Support Project tackles these issues and more.

Check out what Meyer has to say and then click here to submit your own questions to him.

Disability Scoop: What does it mean to be the sibling of a person with a disability?

Don Meyer: Just about anything you can say about being the parent of a person with special needs, you can pretty much put ditto marks under that for sibs. They’re going to have pretty much the same issues that parents are going to have plus a few that are uniquely their own. Sibling issues are lifespan issues. Brothers and sisters will be in the lives of people with disabilities longer than anyone will, certainly longer than any service provider will and likely longer than their parents. When the best special education program is a distant memory and mom and dad are no longer there, it will likely be the brothers and sisters who assure that that family member who has a disability lives a dignified life.

That said, It’s not a monolithic experience. The sibling relationship is sort of the working definition of ambivalence. Young kids, their relationships growing up can be categorized as “huggin” and “sluggin” often in the same fifteen minute period. And that ambivalence is still there when a sibling has a disability. But from my observation the highs are higher and the lows are lower. You’ll find some people who say that growing up with a sib with Down syndrome is one of the most ennobling things that could ever happen. My sister taught me the meaning of unconditional love, they say. On the other hand you have people who ascribe all of the personal problems that they have in their life to the brother who had a developmental disability and mental health issues and used to come after them with a knife. Those are the extremes, but for most sibs it’s somewhere in between. It’s a pretty mixed bag.

Disability Scoop: What issues do siblings of people with disabilities deal with that are separate from those issues dealt with by all siblings?

Don Meyer: They’re the same issues but they might be a little exacerbated. There can be resentment when the kid with the disability is the sun in the family solar system. You might get a certain amount of that in any family, but usually over time there’s a parity. But when you have one sib who, from a sibling’s point of view, is being over indulged or doesn’t even have to make any effort, that can lead to feelings of resentment.

Future concerns, that’s another thing, worrying about what’s going to happen to us when we grow up. For most people in the general population who have cognitively capable sibs, that’s not a big worry. But if you have a sister with autism and you have parents who haven’t made plans for that sister or who are not really that eager to talk about it, the future is a train headed in your direction.

There can be isolation when you don’t know any other brothers and sisters. A lot of new people when they first post on SibNet (a listserve for adult siblings of people with disabilities that’s organized by the Sibling Support Project) say something like, “Boy this is really something being on this list. It’s like reading pages from my own diary. I’m 40-something years old and I’ve never really talked to anybody else about what it’s like to have a brother who has autism.” Well 40 years is a long time to wait for validation. We would never make parents of kids with disabilities wait 40 years for validation or to talk to their peers, but somehow that’s okay with brothers and sisters.

Other things that sibs might feel different about are guilt, being able to do things your sister can’t do or being in that weird space where your lap your older brother in terms of your abilities, where you become your older brother’s older sister. You might feel guilty about doing things that siblings are wired to do like getting in their face or squabbling.

Some sibs feel a pressure to be the good kid, the one who is going to make everything right, balance scales, not bring mom and dad anymore heartache.

There’s also embarrassment that goes along with being a sib. When your brother decides he’s going to join your eleventh birthday party sleepover with all your girlfriends in his birthday suit, that can be a pretty embarrassing situation.

Disability Scoop: What should parents remember when it comes to raising siblings?

Don Meyer: There is a paper we have called What Siblings Would Like Parents and Service Providers to Know. That outlines many concerns that sibs have, but when I talk about sibling issues I talk about them having unique concerns but I also talk about the unique opportunities. I’m of the belief that sibs have as many unique opportunities as they do concerns.

You see an amazing maturity in many sibs, sometimes too mature, but many sibs are quite mature because they’ve had to handle responsibilities other kids haven’t even thought about. You may have developed patience, diplomacy and you’ve certainly made some sacrifices on your sib’s behalf. There’s insight. I don’t think anybody can have a family member with a disability and not have an expanded view of the human condition. And one of the great joys of doing Sibshops (programs held in cities across the country for children who are siblings of those with disabilities) is to hear the frequently profound thoughts come out of the mouths of these little kids when they talk about what it means to be a friend. Is a friend somebody who calls your sister a retard? They grapple with things like the differences between stupidity and ignorance. Often siblings will use their sib as a screening tool for friends and girlfriends or boyfriends or even a potential spouse.

There’s tolerance. I think a lot of sibs see what the consequences of prejudice are when people look at their sibs and assume stuff. They often get a lot of inspiration from their sibs. They often have a wonderfully unique, slightly twisted sense of humor, an ability to laugh at things that maybe weren’t so funny at the time. There’s an appreciation for things that other people may take for granted. There’s pride that they have in their sib’s ability. There’s also incredible loyalty.

I think there are things that parents and service providers can do to minimize sibs’ concerns and maximize their opportunities. I have seven things I often share with parents:

1. Brothers and sisters need age appropriate information about their sib’s disability and its treatment from a variety of sources. Parents need to be proactive but service providers need to make themselves available too.

2. Sibs need opportunities to meet other sibs of those who have special needs. That’s what Sibshops are all about. They let sibs meet each other and talk about the good parts and not so good parts of having a brother or sister with a disability. We play some goofy games and learn something about the services their sibs are getting. It’s peer support and information within a highly recreational context.

3. Have the best possible communication they can have with their typically developing kids. It’s always important to have good communication with one’s children but I think it’s mission critical when there’s a child with a disability in the family. I always recommend Adele Faber’s book How To Talk So Kids Will Listen & Listen So Kids Will Talk. It’s a very parent friendly crash course in active listening.

4. I encourage parents to carve one on one time out of their crazy, busy schedules to spend with their typically developing kids. Take a trip to McDonald’s or a walk around the lake. Make some special time that you let that child know by deeds and by words that you care about them as an individual. That can be easy for me to say and hard for parents to pull off. But, I have heard from a couple of moms independently of one and other who’ve said, “you know what I do? About every month or every other month I yank my daughter out of school and we play hooky together. We might take a ride or go out to lunch or we might get our nails done. But whatever we do we talk and we talk and we talk. Whatever schooling she may have missed that day is more than compensated for the relationship that we build during that time.”

5. It’s important whether you’re a parent or service provider to learn more about life as a sib. I do sibling panels all the time. That’s really the best way I know to learn about life as a sib. But there also are some really good books out there.

6. Reassure typically developing kids by making future plans for their child with special needs and letting the typically developing kids know what those plans are.

7. Remember that the single strongest factor influencing a sibling’s interpretation of their brother or sister’s disability will be the parents’ interpretation. So if the parents perceive it as a life searing tragedy from which there’s no escape, they shouldn’t be too surprised if their typically developing kids perceive it that way. On the other hand if they perceive it as a series of challenges which they have little choice but to meet with as much grace and humor as they can muster, they have every reason to believe that at the end of the day their typically developing kids will see it that way as well.

Disability Scoop: What responsibilities or expectations do siblings have?

Don Meyer: None of these things happen to all sibs. Some sibs feel like it’s their job to balance the scales, not to bring mom or dad any more heartache and to do well. Sometimes they’re neurotic achievers, or they will only bring good news home to their parents. An off the chart example of that is a woman I met who said it took her five years to tell her parents that she had been raped. She felt that her parents didn’t need any more heartache. That’s one kind of responsibility. Others may be caregiving responsibilities. There are sibs who are the second in command, the junior parent. Sometimes parents share their frustration with their typically developing kids. The rest of the world doesn’t understand what this parent is going through, but the typically developing kid does, so they’ll confide in them the way they would confide in a spouse or another parent. This typically adds to the maturity of that kid, but it’s not your typical parent-child relationship. Some sibs say I had a real partnership with my parents and I like that and others that said hay, you’re the parent, I’m not, don’t be telling me this stuff.

Disability Scoop: What characteristics exist in families where typically developing siblings have healthy relationships with the rest of their family?

Don Meyer: One issue is the kinds of expectations that parents have for the child who has special needs. Sibs from families who’ve done well often say things like, “in our family Mike was just another kid.” Yeah, you’ve got Down syndrome, but you still need to take out the trash. It’s still your night to do the dishes. We’ll cut you some slack when we have to, but you’re just another bozo on the bus. They appreciated that their parents had expectations for their brothers and sisters and that having a disability wasn’t a pass from the responsibilities that other kids had. Plus, that fostered independence for that person who has the disability.

What I often also hear is people saying, “my parents were wonderful people. They did the absolute best job they knew how, but if there’s anything I wish they’d done differently, I wish they had leaned on my sister to do the kinds of things I knew she could do growing up. Had they leaned on her I think she’d be a lot farther along on that path to independence.”

I think other characteristics of families who seem to have done well is keeping the topic of the disability an open topic. Maybe not a dinner table conversation, but certainly a tuck in before bed kind of conversation so that kids know they can talk openly about these things with their parents and that information about the disability is readily available. Finally, in terms of what parents can do, they set the tone. If they perceive it as a series of challenges that they approach with as much grace and muster and humor, they have good reason to believe that by the time their kids become young adults they will still have the same values that they started with.

Disability Scoop: What about if you just had a child with a disability. How can you explain disability or a new diagnosis to your other children?

Don Meyer: That’s a tough topic. There are so many variables there — the age of the child at the time of diagnosis. Whether this is Down syndrome that you know about before the baby leaves the hospital or a traumatic brain injury that happened later in life. It also depends on the age of the person receiving the information and the complexity of the disability. But let’s assume this in terms of young families. Little kids understand disability is in terms of differences in routine and behavior. For a 4-year-old the definition of cerebral palsy might be when the lady comes to your house with the big ball and you roll on it and you learn how to walk. Autism might mean that you like Thomas the Tank Engine a lot and you like to line up your cars in a straight row and you don’t look people in the eye and you do funny things with your hands.

For a 4-year-old that’s okay. Then as they get older parents and service providers need to be proactive in providing sibs with more information because the information that was appropriate at eight may not still be appropriate at age nine. I encourage parents to check in with their kids at least once a year. Just say, “oh, by the way, if somebody asks you what’s the matter with Shannon, what would you say?” Most sibs will be asked that at some point and they need to be able to answer. This is a good way to discuss some possible responses and provide information.

Disability Scoop: How does the sibling relationship change as everyone ages?

Don Meyer: It’s not a monolithic thing and there are different variables for everyone. I’ve heard some adult sibs say, “I get together with my brother, we put his wheelchair in the van and we go to the bar and we have a beer.” Others, especially sisters, they’re moms now.

Meyer’s book Thicker Than Water, Essays By Adult Siblings of People with Disabilities will be published in May 2009.

Read all of Disability Scoop’s original series Scoop Essentials. Your Life. Your Issues. Your World.

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