In a world in which siblings are typically our first playmates and our best friends, my daughter Kendall was destined for a different childhood from what most kids experience.
Having a brother with severe, non-verbal autism has forced her to grow up, in many ways, alone.
Kendall and Skyler unconsciously switched roles many years ago, forcing her as the younger sister to assume the role of teacher and caregiver for her “older little brother.”
Every treasured milestone and rite of passage – including crawling, walking, speaking and driving, was completed for the first time by Kendall and not second as their birth order dictates.
Although she very rarely openly complains, I know all the chaos in our home and embarrassing situations in public make her a bit resentful about the spectacle that is autism. While it’s no one’s fault, she is always second in line for our attention.
As much as I try to put myself in Kendall’s shoes, I struggle to fully comprehend what it must be like having a sibling you cannot communicate with, play with, or relate to in any way.
I imagine it must be confusing and sad to never know where she fits into Skyler’s world – to not know what he thinks of her or feels for her, and to wonder about whether the role she was born into as an unofficial sibling caregiver is a responsibility she can handle as adulthood approaches.
As my kids get older, we find ourselves in a household with one teenager (15) and one young adult (18) who may be close in age but whose behaviors and needs couldn’t be further apart. Some days it’s sad for me to observe and process. So, I try to accentuate the differences with a positive spin for Kendall. I remind her that:
She doesn’t have to share a bathroom and argue with her smelly, older brother about who takes excessively long showers.
She doesn’t have to fight with Skyler over who has priority with taking the car.
She doesn’t have to negotiate with her brother about trading chores.
She can have a private social life and create her own legacy throughout her school years without having to worry about what “Skyler Hellmann” did or accomplished before her.
While I know Kendall appreciates my efforts to put a silver lining on the challenges she faces being the sibling to a brother with autism, I can’t help but wonder about the version of childhood stories and memories that she will share with others someday.
Perhaps she would welcome the opportunity to argue with or be teased by Skyler, like other siblings do, to feel somewhat ‘normal’ for a change.
Perhaps she resents the fact that Skyler couldn’t fill her in on all things high school when she was a Freshman, nor will she get to visit him at college.
Perhaps she feels guilty that her life is moving forward and, for Skyler, time stands still.
It definitely saddens me that Kendall won’t have similar stories about various shenanigans with her brother, like those I share with her about growing up with my older sister.
Despite all the negatives and missed opportunities that come with having a brother with autism, I hope Kendall recognizes that she’s been provided a different set of tools in her toolbox to tackle the unique challenges parenthood may bring her one day (although she swears up and down that she’s NEVER having children!)
She might be more patient, more understanding, more flexible, more spontaneous, more giving, more forgiving, more accepting and more loving … because of autism, not in spite of it.
Kendall is the unsung hero of this family – even if she doesn’t yet allow herself to recognize or accept it.
When enduring painful hair pulling and hitting most of her life at the hands of her brother… Kendall demonstrates great forgiveness.
When recognizing that it’s often too difficult for her brother to attend & support her in activities forcing one parent to stay home as well… Kendall demonstrates incredible compassion and understanding.
When acknowledging that family outings or vacations can be riddled with embarrassment and ruined plans, by participating anyway … Kendall demonstrates flexibility and bravery.
When focusing on her future and personal wellness by making her mental health a priority … Kendall demonstrates great strength, insight and maturity.
I could not be prouder of the beautiful young lady Kendall has become. She’s a straight A honor student with an impressive sense of humor, incredible empathy, and love for all living things – especially animals.
Kendall is wise beyond her years and I love her optimistic view of the world. She is the strongest and most patient person I know and I’m confident she will use all her experiences growing up with an autistic brother to spread hope, joy, compassion and the importance of accepting all of God’s children exactly as they are.
Skyler and Kendall are truly blessed to have each other – they are the epitome of unconditional love.
