Growing up with disabled siblings
Of the six children born into my family, two are disabled. The oldest child in the family, my brother T, has ADD, motor skill impairment, and various other moderate to severe learning and physical disabilities. T served a full-time mission, married in the temple, attends college (for the past 11 years), and holds down a regular 40-hour a week (albeit dead end, minimum wage) job. My younger brother B has Asperberger’s syndrome, an autism spectrum disorder. Although high functioning on the autism spectrum (B works at Blockbuster 12 hours per week, alphabetizing DVDs), B is also severely intellectually impaired and will always require a full-time, supervised living arrangement (I assume he’ll be with my parents until they die, and then with me or another sibling for the remainder of B’s life). Without hesitation I can say that growing up with two brothers with disabilities has profoundly influenced my life and who I am.
Thankfully, compared to a generation ago, disabilities today are more frequently discussed, and accepted, within mainstream society. In the past, disabled children were often shipped off to hospitals, “schools,” or sanatoriums where they had little to no interaction with their families; today, many disabled children, like my brothers, remain in their homes with their parents and brothers and sisters.
Relatively little research has been done on the effects of growing up with a disabled sibling. However, the limited literature available does seem to accurately represent my personal experiences, in that research shows that having a disabled sibling is a “complicated” or “mixed” experience for the non-disabled siblings. While siblings’ experiences in these types of homes can be challenging, painful, or stressful, living with a disabled sibling can also foster sympathy, responsibility, and growth in extremely beneficial ways.
As a young child and teenager, the most painful part of having disabled siblings was the cruel ways in which other kids, and sometimes adults, treated my brothers. Since I was born shortly after T, and we were only a year apart in school, I was acutely aware that T was different from a very early age. I can still remember the shame and sadness I felt as the kids on the playground would call T “retard,” push him down, trip him, and shun him from their games and cliques. Together we would run home from school crying, with the mean kids chasing us up to the edge of our driveway. Even at church, throughout his teenage years T was relentlessly mocked, bullied, and belittled by the kids (and, unfortunately, at times, youth leaders) in the ward. These experiences were extremely traumatizing for me, even though I was not usually the direct target.
As an adult, the most painful part has been that I mourn for the men my brothers could have become without their disabilities. For example, although autism disorders often obfuscate emotional connections and intellectual capacity, I occasionally catch glimpses of B’s true personality and intellect. At times he can be loving, thoughtful, and appropriately humorous. Intermittently, he will send me emails that astonish me with their sound logic, organized and consistent structure (I’m telling you, this guy should have been a lawyer), perfect spelling, and vocabulary far beyond his IQ. I mourn for this lost brother every time I see the “B is off in his own world” blank stare or when he has a very public meltdown at Wingers because they put ketchup on his hamburger instead of leaving it plain.
As a child, I think that having disabled siblings helped me become very responsible and hard working. As soon as my parents determined I was mature enough, I “babysat” my older brother T while they went grocery shopping or on a date. Functionally I was (and still am) the oldest child, even though I was the 2nd born (birth order characteristic tables show I have all the personality traits of a 1st born). Being the “oldest” child, and because T’s motor skill impairments affected his ability to perform physical tasks around the house, I was often expected to pick up the slack and set a good example for the younger kids. I didn’t always appreciate the extra chores, but looking back on it I can see that I became a much more responsible child than my cousins or friends my same age. Starting at around age 10 or 11, my parents could go out for the evening and by the time they got back I would have the dinner dishes done, the house vacuumed, and all the kids bathed and in bed. I felt very driven—not just to be average but to be a super star—at home, school, and church. Perhaps this was because subconsciously I thought my parents needed it (did I feel that I needed to make up for my older brother’s lack of achievement?), or perhaps I did it for the attention, since it was all too often focused elsewhere. Regardless of the motivation, I’ve turned out to be a very hard-working, motivated person. I am certain that having disabled brothers informed this outcome for me personally.
Another benefit to having a disabled sibling was that I became very sensitive and sympathetic toward people who were different. I didn’t realize this until my mother pointed it out to me a few years ago, but I recall now that I was the one the teachers (at school and church) would take aside and ask to befriend the new kid, the kid whose parents were divorcing, the kid who wasn’t fitting in, or the underdog. Because I lived with the bizarre and unusual on a daily basis in my own home, people who were different never scared me. When your autistic brother can’t stop licking people who come over to the house, the new girl who doesn’t speak English doesn’t even phase you. Plus, I would always think of my older brother T and how he had no friends, and I wouldn’t be able to bear the thought of this kid being in a class with no friends. I can see now that my hyper-sensitivity to issues of social justice is directly linked to growing up in a home with disabled brothers.
On the whole, I am profoundly grateful for my two disabled brothers and for the challenging and rewarding experiences we had growing up together and continue to have now. All pros and cons and analysis and research set aside, I love my brothers desperately and I know they love me. More than anything else, I desire to be with my siblings, my parents, and my husband for all of eternity. The intense bond we share motivates me to repent and improve myself and grow and learn, all so that I can be worthy to be with them forever. And, in the end, isn’t that the point of having a family?