Growing up with an autistic brother had its fair share of rises and falls. But the impact he has made on my character, virtues and spirit continues to surprise me every day.
When I was around 12, I was traveling with my brother on a plane between my mother and father’s house. We happened to sit next to a very talkative woman. This woman, however, didn’t talk much about herself. In fact, I did most of the talking, because she was asking me question after question about my brother and autism. What foods does he eat? What grade is he in? Does he have friends? After our short flight was over, she said goodbye, shook my brother’s hand, and left the plane.
I remember waiting a few seconds, long enough for her to be just out of hearing range, and saying the one thing that I wanted to matter to her as much as my brother’s TV, food and social habits did: “My name is Antwon.” And as I watched my name, my identity, fade off into the space between us, I began my challenging journey to find my worth and identity in the monster known as Adolescence. I knew autism defined my brother, but I didn’t know it defined me, too.
‘Well-Sibling Syndrome’ not only encompasses the feeling of being “forgotten” because you’re lucky enough to be healthy, but also the guilt you feel because you’re lucky enough to be healthy, the burden of becoming an adult before your time, and the struggle to identify as more than “the other child.” As someone who has been blessed beyond measure to have a special needs sibling, and also the medium to discuss my experience, I’d like to offer up the following as things your well child may feel. These things may often go unsaid because of the guilt that accompanies the feeling of worsening your parents’ burden.
- Your well child has a very special relationship with your special needs child. I was building couch cushion forts with my brother while others could barely get him to reluctantly shake hands. And they were GOOD forts, too!
- Your well child will, at one point or another, harbor even a small amount of bitterness regarding double standards. “Why do I have to eat all my food? He didn’t!” “I always have to clean our room; she never helps!”
- Your well child will wonder if all of their activities and interests are placing an unfair burden on you. They want to protect you as much as you want to protect them, and they know you have a lot going on.
- Your well child worries that they will be responsible for your special needs child in the future. This didn’t hit me until I was much older, and to this day I plan my life and finances with it in mind.
- Your well child will wish the health and “cure” of your special needs child on at least one birthday cake. But they’ll lie if you ask so you don’t feel they wasted their wish.
- Your well child will need an “Elevator Speech” regarding his sibling’s condition. When one kid at school innocently asked me why my brother was so loud sometimes, I told him “It’s because he’s artistic.” “So am I,” he retorted, leaving me both confused and embarrassed.
- Even though they aren’t special needs, your well child needs reminders that he is special, too.
- Your well child has a lot of responsibilities – more than you know, and more than you impose onto them. We take our jobs very seriously!
- Your well child will learn that life is not fair long before other children do. And they can use your help remaining innocent and optimistic.
- Your well child will be picked on by a mean and probably compensating bully, and will use your special needs child as ammunition. But your well child will stand up for themselves, as well as their sibling. Be understanding, and use it as an opportunity to empower your child to stand up for what is right.
- And perhaps the most troublesome for my parents to learn years later: Your well child will feel pressure to be perfect, if only for a moment. It’s inevitable.
Studies have shown that there is monumental positive effect of being the sibling of a special needs child. These things include developing a level of maturity that is by far greater than our same-aged peers, increased “pro-social” (helpful/empathetic) behaviors, increased patience and tolerance of diversity and an increased sense of pride, loyalty and caring for our sibling (see #10 above). But it is important to realize that these virtues don’t come without a price.
I have to clarify that my parents did an amazing job raising us. I was cloaked in love and support, and I got to enjoy a carefree childhood, as circumstances would allow. But the struggles we face don’t always come from outside. They are often from within, existing as a subconscious reminder of who you are and what’s important to you.
I entered adulthood without regrets, a unique outlook on life, and the fort building skills of a king. I’d say that makes it all worth it.
Antwon Chavis, M.D.
Resident in Pediatrics
OHSU Doernbecher Children’s Hospital
Dr. Chavis has a wide array of interests, including working with teenagers, children with mental health concerns and children/adolescents with behavioral or developmental issues. He enjoys working with older children and their families because he gets the opportunity to educate the patient directly, as well as the family that cares for them.
Like this post? Check out Dr. Antwon Chavis’ second blog post, “A letter from one ‘well child’ to another.”
6 responses to “11 things your ‘well child’ wants you to know”
Beautifully written Antwon…thank you for sharing!
Beautifully written. From the Momma of a typical child and an autistic child, this really helped me see things from another perspective. Thank you, your piece had me in tears.
Wonderfully written! An important message for everyone!
Sweet story. Thank you for sharing, such an important message.
Yet again, Antwon, I am proud to know you. Your words and the thought/feeling behind them are powerful. Nicely done.
Son, thanks for sharing your thought and feeling. Some of it I knew and some of it was new to me. I am very proud of you, not just for being a doctor (which is really cool) but for being a good son and a great younger brother who has had to fill the role of older brother. I am bless to have the world’s two greatest sons.