I Am My Brother’s Keeper

For a sibling, what is it like to have a child with special needs in the family?

With the birth of each new child in a family the dynamics change, but our family was about to irrevocably alter more than we could ever have dreamed possible on the cold January day my brother was born. For the first six months, we assumed David was a healthy, average baby but as time went on, it became more obvious to my mother that he wasn’t hitting the same developmental milestones her three older children, all girls, had. My brother’s development didn’t follow the norm, but back in the early 1960s the diagnostic tools weren’t advanced, and my mother’s concerns were consistently ignored by the doctors.  David skipped crawling, going straight to an elephant walk with his feet and hands. His appearance was normal, an adorable auburn-haired toddler with bright blue eyes and a mischievous smile. However, his speech was very delayed; at the age of two he still had no understandable words.  Once again, the doctors brushed off my mother’s worries pointing out that boys developed speech more slowly than girls. Finally, at my mother’s insistence, a doctor began investigating David’s developmental delays and a diagnosis of mental retardation (the term used in the 1960s) finally followed. I can only imagine the heartbreak my parents experienced: the loss of their dreams for their son and the challenges of dealing with his physical, emotional and educational needs while also raising three other children. But for a sibling, what is it like to have a child with special needs in the family? Every family and every situation is different, so the story I tell is only my own, but perhaps there are commonalities for families with special needs members.

My role as the closest sibling was one of very intense involvement, with responsibilities past the normal sibling boundaries. I vividly remember trying to teach him to say words, rewarding him with M&Ms when he made a successful attempt. My sisters and I worked with him on the alphabet and eventually taught him to read simple words. The family focused on my brother, and as a compliant, shy third child I quietly did my best to blend in and not cause my parents any further distress.

As we grew older, I often took him places with me. A passion for swimming was a common bond, and it was hard to get out the door to go to the pool without taking him along. In fact, David wanted to go everywhere I went and I usually acquiesced, desperate to get my parent’s recognition that I was a good sister.  The only way I could go somewhere without him was to concoct a story, telling him I was going to the doctor to get a shot. Shameful, but who wants their brother, disabled or not, to go everywhere with them? Most of the time he was pleasant, but occasionally he would act out in public, humiliating and overwhelming me. As David got older, taking him out in public by myself became more difficult because of public bathroom facilities. This was before family bathrooms existed; allowing him to use the boy’s room alone was not an option, so I took him in the women’s restroom. Because he had a normal appearance, his mental disabilities weren’t immediately apparent to strangers, and I cringed in embarrassment as we received dirty looks and rude comments.

My secret suspicion was that if my brother was developmentally delayed then didn’t it stand to reason I was also? My own speech impediment, which required years of speech therapy, exacerbated my self-doubt.  I harbored this insecurity for years, never voicing it.  Who would I have asked?  My parents had their hands full and my job was to be the easy child, help with my brother and not create issues.  My teachers didn’t seem to know I existed; I sat quietly in the back of the classroom and never made trouble.  My report cards were mediocre but no one noticed and I did just enough to get by.  My childish thought process was that if I were capable of better, someone would intervene. With no academic hope, I threw myself into sports, something I could do that didn’t require too much mental aptitude. During an era when girls didn’t normally participate in sports, I became the athlete my father wanted and finally received some parental approval and attention.

When I was a teenager I was torn between wanting my freedom yet feeling guilty about leaving my brother behind.  David’s behavior was often out of control; his particular form of disability included acts of self-abuse such as biting his hand, hitting his head and punching himself in the face.  As he became bigger and stronger, I couldn’t physically control him, and it became more awkward in front of my friends. I hesitated bringing new friends home and held my breath when dates would pick me up at the house. How would people react, how would David behave, would people think something was wrong with me because my brother was “different”?

I reveled in the total freedom when I went to college, yet I missed my brother.  When I went home for a weekend, I was shocked at how much I had changed.  I no longer had the patience to sit and help him for long periods of time.  Until I went to college, I spent hours listening to him attempt to communicate, working with him on language skills, reading to him and playing games with him.  Now that I had experienced independence, I rebelled against the constraints.  Once again, the guilt set in.  How could I be so selfish and impatient with my brother when I was out in the world having fantastic experiences that he would never have?  I chastised myself for my feelings, yet I found myself coming home less and less frequently.

Our lives became less intertwined, a natural occurrence for most siblings.  As my brother went through his teens and twenties, his life became even more difficult.  His appearance was slowly changing, reflecting some of his escalating problems.  His self-abuse resulted in a detached retina leaving him with vision in only one eye.  His scoliosis progressed, causing a somewhat crooked stance and a grimace of pain on his face.  His inability to communicate his needs led to increased frustration and outbursts of anger.

David was unhappy and quick to resort to violence, usually towards himself, but on several occasions his rage was directed towards me. The first time was in the driveway at my parents’ house. I was taken off guard at the sudden anger when I told him that I was leaving and no, he couldn’t go with me. He pushed me down hard onto the gravel driveway and when I fell my ankle twisted painfully, resulting in a sprained, swollen ankle.  I was upset, but it was an injury that I could hide and with the advantage of being young and fit, it healed quickly. It was the first time he had significantly hurt me and I denied the importance of it, convincing myself it was a onetime occurrence.

My denial didn’t last long. A few months after the sprained ankle, I was alone with David and I made the critical mistake of denying his demand for more cookies. With no warning, he punched me hard, directly in the eye.  The blow temporarily stunned me, the physical pain was immediate and severe.  I knew there was no way I could fight back, he would win without a doubt. Instinctively, I knew fighting back would also escalate the physicality, and we were alone in the house; there was no one to rescue me. I ran into the bathroom, narrowly escaping in time, locking the door just as he got there. David’s violent outburst left me shocked, scared and crying because of the physical pain but mostly tears of anguish, sadness and worry about my brother.  The close relationship with my little brother was disintegrating, giving way to one of fear and mistrust.

I was also mortified as I went to work the next day and attempted to deal with all the questions about my black eye. I stammered out flimsy, transparent excuses as people expressed their concerns. I wish I could have been honest, but I was ashamed of my family issues and still young enough to think my family was the only one with problems. I couldn’t imagine that anyone would understand.  Most people assumed I was in an abusive relationship, but no one suspected the abuser was my intellectually disabled brother. My black eye healed, but the incident left invisible scars; I no longer trusted David, and I was afraid to be alone with him. My family was struggling and I wanted to help, yet for the first time, I was physically afraid of my brother. He was no longer the adoring, freckle-faced brother that was my childhood playmate. He was a grown man, stronger than me and when angry, out of control. To protect myself, I had to separate from my brother, a rift that caused sorrow and self-reproach. How could I simultaneously love my brother so deeply yet feel his very existence was like an anchor around my waist, slowly pulling me down deeper and deeper?

It soon became evident that my aging parents were no longer able to safely handle David’s violence, and thus began a series of homes for David.  Some were hellish places and sadly, we learned to be grateful when we found a mediocre placement.  His violence continued, and he was arrested for assault and battery against a total stranger. With an IQ of 53, my brother was deemed incompetent to stand trial and was ordered to 90 days in a psychiatric facility. David was medicated to control his impulsive, violent behaviors and was eventually diagnosed with possible schizophrenia and obsessive compulsive disorder in addition to his cognitive delays.

During this time my life followed the expected course: college, career, marriage and children.  I worried about my brother, visited him occasionally and honestly loved him, yet I was increasingly focused on my own life.  While most siblings naturally separate as they mature, there was always a nagging sense of sadness and guilt for me.  Why should I be allowed to be so happy when my brother’s life was so painfully difficult?  At my happiest times, thoughts of him often darkened my pleasure.

There was also resentment.  As a child, I had grown accustomed to my brother’s needs being the first priority for my parents.  I never liked it, but I accepted it, on the surface.  As an adult with children of my own, I wished that my family could have just one Thanksgiving or Christmas where everything didn’t have to revolve around my brother.  It would be so nice if my parents could enjoy their grandchildren and not have the holidays dominated by my brother’s constant needs, demands and volatility.  Although it was totally unacceptable to admit, I sometimes wished we could ignore him so we could have a “normal” family.

Years passed and my brother seemed to get better, or at least they finally found the right combination of medications.  After a series of failed placements, we finally found a home that could manage his issues, provide a workshop that kept him busy and had a yard with a basketball court to burn off his energy.  Mercifully, miraculously, he was finally content.

Our parents died within a year of each other, a difficult loss for all of us.  As my mother lay dying, her main concern was for her son’s future. She seemed to cling to life just long enough for me to gain legal custody of David.  She died the next week, and I’ve taken over the caregiving duties to the best of my abilities. A combination of aging, pharmaceuticals and a behavior modification program have made my brother much calmer and easier to handle. Thankfully, he is in a stable home and finally seems satisfied with his life.   He works in a sheltered workshop, has a roommate, friends and activities.

As we grieved the loss of our parents, my brother and I also had to adjust to new roles with each other. We both had to make compromises; I wasn’t as lenient as my Mom, I had rules and boundaries different than our mother’s. As he went through adjustments, I did also. I went through stages where I resented the responsibility for David; the nightly phone calls, the weekly letters and the monthly visits seemed overwhelming. With the passage of time and frequent visits, our relationship became closer. I let go of the resentment and found myself easing back into a more loving, compassionate sibling relationship. Time and experiences have also given me the wisdom to know there’s no such thing as the “normal” family I used to long for.  My family, including my brother, is wonderful just the way we are, complete with dysfunctions and disabilities. David has become a blur between being my brother and as time goes on, almost like one of my children. Since my mother’s death, I’ve gradually begun to understand my mother in a way I regretfully never did when she was alive. I empathize with her protective feelings toward the child that can’t protect himself. I no longer resent the lack of attention and recognition I so desperately craved. My brother needed it, he deserved it and my mother did what she had to do. Like a triage nurse, she tended to the patient most in need of care. I often talk to my mother on the drive home after visiting my brother. I tell her not to worry, David is doing great. I apologize for not helping her more when was I younger, for not fully comprehending the magnitude of her situation. I can’t undo the pain of the past, but I do promise her I will always be there for David. I love him. He’s my brother.

Categories: Guest Blog