I learned at too young an age what the sound an ambulance siren makes as it arrives to its destination. I remember the roar of the EMS engines and the flickering red glow the lights cast over my parents’ faces as I watched my brother get wheeled away. The subsequent smell of a hospital, taste of cafeteria food, and colloquial use of medical jargon were commonplace throughout my childhood.
My two siblings were both born extremely prematurely, my brother at 23 weeks and my sister at 30. His early entrance resulted in blindness, cerebral palsy and life as a quadriplegic, and she has faced a number of significant health battles throughout her life as well. Despite this, my parents worked tirelessly to give us a richly happy childhood. We weathered and embraced the many challenges that came our way as a family. For much of my childhood, I thought our family was pretty normal.
However, as an adult now, I'm aware that I represent an unusual and under-represented demographic: siblings of special needs children. Whenever I meet a family with a special needs child, a family with a child battling cancer, or even a family who have lost a child, I always think first of the siblings. Our experience is a complex one, and for all those parents, teachers, or family friends in our lives, here are five important things to understand about children with unwell or special needs siblings.
1. We have to suck it up a lot.
For every medical emergency, hospital stay, or frightening event that happened in our house, I can guarantee one silent, isolated breakdown; tears in the bathroom, pretending to be asleep to avoid crying in front of the babysitter, and an overwhelming, internal implosion as every force possible is employed to stuff the emotions. Simply put, when something happens to our siblings, we don't have the luxury to react, and certainly not to fall apart. It feels selfish under the circumstances. This is how I coped with a myriad of unsettling events throughout my childhood, but it probably reached its maximum toxicity when my brother passed away at the age of 23. I'm still trying to unravel the layers of emotional stuffing, and figure out what processing the loss is supposed to have looked like.
2. We have a lot of guilt.
Growing up, I always wanted a brother who would teach me how to throw a football or watch college basketball with me, and yet I hated myself for wishing my brother were anything other than what he was: beautiful, smart, perfect and strong. Yet, there's a constant war between the reality that life with disabilities is hard and guilt because we're not the one strapped to a wheelchair for life. Whether it was something big, like the fact that I wasn't ever able to play sports in high school because they would need childcare during after school practices, or something small like waiting in the cold outside because the wheelchair took so long to load the van, even acknowledging the difficulty of these things is really confusing for a child.
3. We are extremely protective.
While my brother had an strong supportive school environment and a wonderful community who loved him, there were a few bratty kids along the way who called him a “monster” or “ugly.” Similarly, my sister over the years has also been the object of some more subtle snubbing and insults. I'm pretty laid back, but there's volcano of rage whenever one of my siblings is in the line of fire. Families need one another. Our special needs siblings need us even more, and feeling the blow of the negative, ignorant statements that have been said against them only makes us that much more protective.
4. We face fear every day.
A sibling of a special needs child lives with the possibility of losing an immediate family member. This cannot be understated: the constant threat of losing a family member is an unsettling and even crippling reality that permeates every area of childhood. A phone call could mean another hospital visit, and a hospital visit could mean rapid deterioration. The fact that I had grown up by the time this fear came to pass, did not shake the fact that I lived with a proximity to death that most children never know.
5. Life has taught us compassion.
After growing up with the unique challenges that our family faced, and survived the death of a sibling, there's not much that can scare me. The kid in the wheelchair? No problem starting a conversation. Introduced to a vocalizing, rocking, mentally challenged person? I'll give them a hug, no big deal. Someone lost a family member? Let's talk. My siblings have taught me that treasure lies inside people, and their worth is not measured by what they can communicate or by what is immediately apparent. My brother was my best friend and my whole world and he never said a word to me. We didn't need words.
Parents of special needs kids, you're doing an amazing job. We, your other children, see your courage, your fierce love, and your heroic sacrifices.These words aren’t meant to add pressure on parents, but to give a voice to the siblings who are silent. Not only parents, but teachers, relatives, family friends and neighbors can take note too and keep an extra eye out for these kids. Just as you would take your special needs child to their doctor for a physical ailment, consider taking their sibling to a psychologist or a counselor. Ask them in the quiet, non-crisis moments, how they are handling everything. Tell them it's okay to feel, and it's okay to fall apart sometimes. And rest secure knowing that they will grow up a better and stronger person for growing up with the precious gift of a sibling with special needs.