Thursday, December 6, 2012

How siblings feel about brothers and sisters with special needs: a reality check

"Maaa-aaaax," Sabrina says in a sing-song voice, "want me to have a magic show for you?" Sabrina's into doing tricks, and Max is a devoted one-man audience. She holds performances about once a week at bedtime, in Max's room. "Look, Max, I'm placing the little ball in the bag!" she says, pushing it deep into the folds of a purple silk pouch. "Look, Max, the ball is gone!" she says, one hand hiding a suspiciously bulging corner. Max grins. I have a feeling he's just humoring her.

Sabrina's magic show is amusing to Max—and thrilling to me. I love when she's super-nice to him. Like many siblings, Max and Sabrina fight a lot. Like many mothers, it drives me nuts. Now I know exactly how my own mom felt when my sister and I went at it. But unlike my mom, I have a nagging worry in the back of my mind: Will Sabrina be there for Max when Dave and I are gone? Will she be able to handle the responsibility? What resources will she have? Why oh why do we keep procrastinating having a third kid?

So it was interesting to read the results of the just-released Easter Seals Siblings Study, done in partnership with MassMutual. The organization did an in-depth surveys of 351 adults who have a sibling with a developmental or physical disability, and a parallel study with adults who did not have a sibling with disability. Some of the responses were heartening, some made me nervous. A few notable ones:

• Six in ten respondents are involved in the daily lives of their siblings with disability (less than three in ten other siblings say the same).
• About 80 percent say they have a close relationship with their sibling with a disability and that the relationship enhances their life (60 percent of the general public respondents felt the same).
• Nearly half say their parents house their sibling with a disability; 14 percent say their sibling lives with them, and 23 percent say they are already the primary caregiver—and that caring for their sibling is a full-time job.

Jennifer, the 2011 Easter Seals Adult Representative, with her older brother Tim

• Thirty percent of primary caregivers don't get emotional, physical or financial support from friends and family.
• Some 60 percent say having a sibling with special needs has a positive impact on their quality of life, teaching them patience, understanding, and compassion and giving them perspective.

Mary and her brother, Joseph

• Forty percent of respondents say their kids benefit from having an aunt or uncle with disability in their lives.
• Many siblings cited increased stress in caring for their sibling with disability; three-quarters of primary caregivers say sometimes their relationship with their sibling puts a strain on their family life.

Easter Seals plans to use the findings to better support families caring for someone with a disability, and raise more awareness of the challenges they face.

I know Sabrina is going to have serious responsibility resting on those sturdy shoulders of hers. Fretting about the future never does me any good, though (why my special needs mom blinders come in handy). This is a good reminder to sign her up for a SibShops program. I'll keep doing my best to nourish Max and Sabrina's relationship; help grow her understanding of what it means to have cerebral palsy and be the sis of a kid with special needs; separate them when they fight so they do not disfigure each other; and enjoy the magic when it happens.

Kyle, the Easter Seals 2011 Child Representative, with his sister, Julia


  1. I know that sometimes my sister wants to strangle me but i also know that she and my brother would smash anyone who tried to hurt me.

  2. And here's some more sacerdotal evidence. On my speech and language therapy course all students were in one or more of the following groups:

    A parent involved in health or education
    A sibling or parent with a disability or illness
    Strongly religious

    I found this very interesting.

  3. I have the peace of mind knowing my special needs son is in a wonderful group home. He has been living there since the age of 10. My two other children will eventually have to oversee his care and make the big decisions, but they will not have to live with him and manage his day-to-day care — something I, and they, will be very thankful for.

  4. Thank you for writing this, Ellen. As usual, your thoughts come at just the right time for me. We have been discussing the possibility of a second child for quite sometime, and we always worry about the responsibility that we would be leaving a sibling... maybe it's time for those special needs blinders, and just enjoy the possibility of having 2 children who will love each other and play and fight with one another. Thank you.

  5. What if both your kids have special needs? They'll be able to relate to each other for sure, but ugh no one to look after them.

  6. I have taught my older son to love, care, and protect his little brother with special needs. I'm sure it is not easy for him to deal with a brother who has different abilities and is not able to communicate with words. He told me once he wishes his brother could talk to him, and it broke my heart. I always explain to him why his brother cannot do what other children can, and he seems to undestand even though he's just 6 years old. I'm sure he will be there for his brother when my husband or myself aren't there anymore, but I'm sure it won't be easy...

  7. Well, if it gives you some piece of mind, I'm in the midst of applying to grad schools to get my Masters of Social Work with a Macro focus with intention of working at the national and state levels (my home state is New Mexico, one of the poorest, economically) on disability policy.

    I'm a huge advocate that as our aging population continues to grow, and live longer sicker (the projected rise in Alzheimer's rates and so on) our country needs leaders and policies that reflect our ever-changing demographics, to meet the demands and needs of our millions of unpaid army of family caregivers.

    It makes economic sense, it makes logical sense and it is our duty as a nation to provide the forward-thinking support systems that will work going forward, so that families won't have to shoulder the responsibility of caring fot their aging parents, relatives and siblings on their own.

    I know I'm typing to the choir here, just thought that you'd like to know that this generation of twenty-somethings (me) sees the needs and is ready to meet the challenges head on.

  8. Ellen - thanks for sharing your perspective, as always it is insightful.

  9. I think it's really positive that more adult sibs felt they had a meaningful relationship with their bro or sis with disability than the control group. And I think it makes sense that the ongoing strain of trying to provide the supports our kids need is unfortunately eventually passed to our other children. I know we are supposed to put lots of things in place and I hope I'm able to do so. But I think family will always be most invested. Thanks for sharing -- I hadn't seen this one.

  10. This is something that I think of A LOT. I always knew I wanted a couple of kids but after Seraphina was born with CP, we kept putting it off because we wanted to concentrate on her and help her become a little more independent before we had a baby around. Well, now she is almost 3 and we know that it is time (almost..). We want a brother or sister for her (and us) not just because we want so dearly to have another child and we know she will love having a friend around but also because we want someone that will be there for Seraphina when we are gone and will take care of her. Selfish of us? Maybe. Does it change my mind? Nope.

  11. I know that this post is giving people a lot of hope, but it makes me feel really sad. I so hope that Ethan can get there some day, but right now he hates his autistic brother with the fierce heat of a thousand suns. He blames him for his every unhappiness in life. I am hoping and praying that it's because he's 10, and that with maturity and the fullness of time this will change.

    1. Varda, I am not downplaying what Ethan is going through (OR you), but my sister and I did not get along very well when we were kids, either, and now we do. Obviously there are a whole other set of variables when a sibling has special needs, but surely some of what's going on is pure sibling rivalry. I know how loving and caring you are, and I have a feeling that over time he will come around. He is so young.

  12. I'm a sibling of a special needs child. My brother just turned 21 today and nothing brings me more pleasure than to watch him grow. We have our fights like everyone but I would kick some butt if anyone ever hurt him they would have me to answer to. I knew at a young age that I was gonna be the one to take care of him when my parents were gone and I was blessed to find a loving husband who understands what I have to do. I love my brother with all my heart and would never think of not taking care of him. Don't worry about your children they will be just fine as long as they love each other. I grew up very protective of my brother and would do anything for him.

  13. I think about this a lot as well. I have two children on the opposite side of the autism spectrum. The oldest, M is very high functioning and the youngest, Dan, is non verbal with high sensory issues. Like Varda said, sometimes M, who is 10, says mean things about Dan but the other day M so patiently un-buckled Dan out of the car seat and sweetly lead him out of the car by the hand. I praised M when he did that and now it has become his routine to take Dan out of the car. Glimpses like these do give me hope. I am not sure if M will be able to take on full responsibility when he gets older as he himself has his own issues, but I am living in the moment for now with my "special needs blinders." Thank you for sharing!

  14. I have a sibling with special needs. I hate to be so blunt and am not trying to be mean but if I was a sibling and saw this post I would think, especially in my teenage years that it ("why do I procrastinate having a third child") means that I was only born to provide for your first born and to ensure his health and safety. Growing up and maturing, and reading your blog I know that is not what you meant as you would obviously love and welcome a child to simply be a child. Further, are you prepared to have talks with Sabrina that she will have this commitment for life- is that something you really want for her? To base her decisions, her goals, her dreams and her family on a decision that she had no input in for she in fact never decided to have children. I know my parents were thrilled, when I agreed to take over the responsibility of my brothers care and agreed to do so when they were gone, yet I can not imagine knowing in advance that it was not a choice, but an expectation that this was my responsibility- assuming so makes it seem like my reason, my being and my love was implicated on the notion that I would agree to take care of my brother- rather than on my own individuality. just thoughts...

  15. An interesting post. My younger brother has autism, and I guess I'm expected to be his caregiver eventually. Although, I never really thought it would be any other way. Growing up, it was just assumed (by me) that I would be his primary caregiver one day.
    I would say though - don't force it on Sabrina. My parents never forced me, but I sometimes have to hear stupid taunts like: "who knows if you'll take care of him when we're gone?" and it's like...uhhhh I already said I'd do it, is there any need for the guilt tripping? Would you want me to take care of him because I WANT TO (which I already do) or because you're busy trying to guilt me into doing it - which you don't even need to do.
    Anyway, it's true - siblings of those with special needs learn a lot from there. Patience, compassion and empathy for people around them, and so much more. Super thankful for being a better person than I would have been without my brother.

  16. I often stress about my now 10 year old daughter taking care of her 11 year old brother whohas Down Syndrome and is deaf when i am gone. I want her to live her own life, not to be hindered by her brother yet to love him immensley(which she already does)

  17. Seriously, this is part of the reason why we went on to have two more children after our son with special needs was born. And now I'm pregnant with Kid #4. I don't think I would have wanted a large family if it weren't for my son with a disability, but now that he's here, I like the sense of community that our little clan will provide for him. Inclusion right here at home, ya know? Not that we had the other kids FOR him, but I'm not going to lie - having more support for him did factor in.

    Also, I full expect my other children to take over the responsibility for their brother when they're adults and my husband and I can no longer care for him. It's a lot to place on somebody, yes, but all I can do is pray we raise kids with enough character to accept the responsibility with love and grace. And gratitude, even!

  18. This study completely left out how much many siblings of disabled children resent their sibling. I've spoken with several other children with disabled siblings, and they, like me, utterly despise their siblings. We may care for them, but a lot of us resent them. Speaking from personal experience, I experienced borderline neglect from my parents thanks to my autistic baby brother. My needs were second to his, which is stupid because we're both equally human. Even more so, I'm the only one who's gonna add up to anything, so why is he getting all the attention? Many others feel the same way. We all hate our siblings.

  19. Hey there- I am Katy (kathleen) Burke. I am in the process of publishing a children's book about autism. It is from the perspective of a girl who's little brother has autism. It is a bit of a "text book" for kids to learn about the basics of autism and I think it's something that can help create a safer environment for people who think and behave differently than the "norm". Please check it out if it's something that interests you!


Thanks for sharing!

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