Siblings Disabled From Birth

Most of us involved in the care of ailing siblings come late to the party, showing up to try to help somebody on the sunset side of adulthood. Our brothers and sisters are mostly coping with the kind of illnesses you contract when you can no longer call yourself middle-aged with a straight face. Diseases we still mostly associate with our parents and their friends.

Matters are very different for those whose families include what we now call special needs children. And whether that means the revelation of Down Syndrome before or at birth or a constellation of unfolding symptoms in infancy and childhood which may be diagnosed, rediagnosed, and misdiagnosed indefinitely, it changes the dynamic of a family.

Any family.

In most cases this is because the special needs child requires additional time and attention from the parents, whose marriage may also be challenged by an unanticipated—and face it, unwelcome—change in the way everybody had assumed family life was going to go. Often the special needs child has severe medical issues of some sort, requiring a whole new level of parental advocacy. This whole familial stew is then seasoned with varying amounts of guilt, confusion, and resentment and shaken daily.

When You Have A Sibling Disabled From Birth

If you have a sibling disabled from birth, the environment in which you grow up will initially seem to be normal—because for your family, it is. And then over time you will begin to notice that your world seems a little bit… different. Because it is. If you are an older sib, the chronology differs a bit and you may see things go south in a hurry when a baby sister or brother with disabilities is born.

While you’re growing up you may not realize, or be able to acknowledge, how thoroughly your life is intertwined with the fortunes and misfortunes of your sibling.

Some of this intertwining may have also complicated your own life, restricted your own activities and options, and required too much maturity too soon. You have probably felt embarrassed—and ashamed to be embarrassed. Guilt-plagued in general. You may have been mortified in public places by sibling outbursts or tantrums, or watched your family torn to pieces by life-altering heartaches and medical crises and impossible responsibilities.

It’s likely that you’ve advocated for your disabled sibling, perhaps against your own parents. Most of all, over the years, you’ve been forced far too often into tough, no-win choices: sibling versus spouse, battles with bureaucracies that shift and misclassify, reluctant placements into living situations which are far from ideal.

And you have always lived with an awareness that one day the responsibility for your sibling is likely to transfer to you.

When that happens, whatever living situation is in place for your brother or sister may change. In fact, it’s almost certain to, whether your sib lives with your aging parents, in a group home, in semi-independence, or in some sort of institution.

One day you will have to do something, even if it’s just flee on a guilt-slicked downhill track reminiscent of an Olympic luge course.

Support Groups

Nobody dealing with a sibling’s health issues could be described as lucky, but for people on the challenging journey of life with a disabled sibling, there’s one shining beacon.

An informed, intelligent, and compassionate community is already in place and you can step right into it.

You don’t have to explain how you feel or apologize for anything. These people really do know what you’re thinking and why, and how your life has gone and where it’s likely to be headed. They’ve been on that same road themselves. They are warm and welcoming, sharing all kinds of practical information and resources.

The Sibling Support Project and Sibling Leadership Network both exist to work with and advocate for siblings of men and women with profound physical and mental disabilities. In the years since I first attached myself to the periphery of these groups, I have watched time and time again as somebody discovers them and collapses into the cushioning welcome of people who understand exactly what they are going through because they’ve been there themselves.

Early on during my experiences with my brother’s illness, I began looking online for resources on dealing with ailing siblings. I found almost nothing, and clung for dear life to a Yahoogroups list called SibNet. For me it was a lifesaver.

This list has a thousand members and its more active sister group on Facebook has 2500. You need to apply to become a member and participate, in order to protect everybody’s privacy. Only siblings are allowed: no parents, children, friends, researchers, or trolls.

Both are components of the Sibling Support Project. The SibNet lists (there are others for kids, teens and grandparents) grew out of SibShops, workshops for children growing up with disabled brothers and sisters.

SibShops were the brainchild of Don Meyer, a Seattle psychologist with two hearing-impaired brothers. In less than twenty years, over 400 SibShops have been created in eight countries, and training sessions are held every year, both in the U.S. and abroad.

The Sibling Survival Guide was written by members of these communities and edited by Don Meyer and Emily Holl. It is incredible.

The Sibling Survival Guide is focused on adults with developmental disabilities, but it covers plenty of territory and addresses just about every situation that a sibling of an adult with any kind of disabilities is likely to confront. It moves gracefully from social situations to research protocols to legal intricacies that most of us never have to think about.

It forms an excellent companion volume to an earlier book of personal accounts by many of the same participants, Thicker Than Water. Thicker Than Water illustrates how the processes and particulars of integrating a special needs child into the family have varied over time and around the world.

The successes and the supportiveness of these groups offer a splendid example of how siblings can assist one another with advice, resources, suggestions and a way to vent about their particular problems in safe and controlled settings.

What to do? When to do it? How to deal with elderly parents in denial and other siblings who checked out of the family situation one way or another? And what about the sibs themselves, likely to outlive their frequently overprotective parents and land in the spare bedrooms of fearful and often unprepared adult brothers and sisters?

People in this community often sign their names with identifying information about the sib who gives them entrée and insight into this special and challenging universe. When I joined, I became “Taffy, sister to Bill, 51, permanent brain damage.” My fingers hated to spell it out so succinctly, but I knew it was okay.

The SibNet participants I’ve been watching all these years span at least six decades, and form a family all their own. They live all around the world, the occasional post from Italy or Japan or Israel a reminder that these situations occur everywhere. Some disabled siblings have passed away, and their survivors grieve with a special, focused intensity. Other list members are young, looking out at uncertain adulthood with an awareness beyond any denial that at some point everything can and will change dramatically, and probably not when they’re expecting it, or ready.

As if anyone is ever ready. For any of it.

I found a shorthand here, an undercurrent of commonality that makes the best Internet lists so useful and nurturing and informative. So can you. 

Siblings Disabled from Birth Resources

AAIDD: American Association on Intellectual and Developmental Disabilities

The Arc: For People with Intellectual and Developmental Disabilities

AUCD: Association of University Centers on Disabilities

Autism Society

NACDD: National Association of Councils on Developmental Disabilities

NADD: An Association for Persons with Developmental Disabilities and Mental Health Needs

NISH: Creating Employement Opportunities for People with Significant Disabilities

SABE USA: Self Advocates Becoming Empowered

Sibling Leadership Network

Sibling Support Project (Sibnet)

United Cerebral Palsy

Terrell Harris Dougan
That Went Well: Adventures in Caring for My Sister
Hyperion, 2009

Eileen Garvin
How to Be a Sister: A Love Story with a Twist of Autism
The Experiment, 2010

Paul Karasik and Judy Karasik
The Ride Together: A Brother and Sister’s Memoir of Autism in the Family
Washington Square Press, 2003

Don Meyer, ed.
Thicker Than Water: Essays by Adult Siblings of People with Disabilities
Woodbine House, 2009

Don Meyer and Emily Holl, eds.
The Sibling Survival Guide
Woodbine House, 2014

Mary McHugh
Special Siblings: Growing Up with Someone with a Disability
Paul H. Brookes Publishing, 2002

Susan Meyers
Check This Box if You Are Blind: A Brother, A Sister, A True Story
Climbing Ivy Press, 2011

Jean Safer
The Normal One: Life with a Difficult or Damaged Sibling
Delta, 2003

Rachel Simon
Riding the Bus with My Sister: A True Life Journey
Houghton Mifflin Harcourt, 2002

Kate Strohm
Being the Other One: Growing Up with a Brother or Sister who has Special Needs
Shambhala, 2005