Soon after Jukie’s diagnosis with Smith-Lemli-Opitz Syndrome, someone close to me said, “you’ll need to watch that Geneva doesn’t get overlooked,” a common concern in families with children with disabilities. I hadn’t yet thought about how life with Jukie would impact his sister; we were still reeling from the news. Of course, all sorts of concerns regarding the “typical” siblings are warranted. Siblings may receive less time and attention from parents overwhelmed by the needs of the child with the disability. Often siblings assume a prematurely adult role in their family. And then they often must take on additional responsibilities as sibling advocates and disability educators.
I can’t say that I haven’t felt these expected concerns about Jukie’s siblings, but I am also keenly aware of the benefits that my “typical” kids realize from having a special brother like Jukie. Jukie has an older sister named Geneva and a younger brother named Truman. One (probably both) is a genetic carrier, but neither was born with SLO Syndrome. They have learned important lessons, and are sometimes asked to do more for the family than are their friends, but one thing these “bookend” kids will never be is overlooked. Because of Jukie’s needs, Geneva and Truman are required to have more patience, sympathy and tolerance than most kids towards their siblings. It is because of this requirement that Geneva and Truman have a deep sense of empathy for others. Jukie schools the bookends, and our bookends are great students.
Of course, my husband Andy and I have schooled the kids as well, buying them books about having a sibling with a disability. Geneva especially devoured them. Some of her favorites are:
The Sibling Slam Book: What It's Really Like To Have A Brother Or Sister With Special Needs, and Views from Our Shoes: Growing Up With a Brother or Sister With Special Needs, both by Don Meyer
Everybody Is Different: A Book for Young People Who Have Brothers or Sisters with Autism, by Fiona Bleach
Rules, by Cynthia Lord
And the kids watch their dad and me field questions about their brother. Every time I answer a stranger’s inquiry regarding Jukie, my response is geared as much for Geneva and Truman as it is for the person asking the question. What a joy it is now to hear Geneva as she steps up as an unofficial ambassador for people with disabilities, for she knows and asserts that disability is natural. I have heard her explain that Jukie is not SLO. He was born with SLO. He is not autistic. He has autism. She knows that Jukie is not his diagnosis. He is a person first. Geneva effectively reframes the conversations so that others come to understand that Jukie is first and foremost just a kid like any other.
As much as I love to connect with other parents of kids with disabilities, so too does Geneva bond with other kids with special siblings (we call such young caretakers Super Siblings). She truly identifies as a “SuperSib,” and enjoys meeting with and talking with other kids like her. They can swap stories about ways that their siblings have embarrassed them (such as the time Jukie came down the stairs and into the living room full of Geneva’s sleepover buddies… without his PANTS). Knowing how important the adult version of these friendships is to me, I am truly grateful that my daughter has also formed such friendships. Last summer, Geneva and I traveled to Boston to attend the biannual conference on SLO. The SuperSibs bonded instantly. Perhaps most heartwarming for me was watching Geneva’s eyes light up as she knelt down to talk with the kids with SLO, all of them reminding her of Jukie. Soon she and the other siblings were spending hours in the hotel pool, holding their breath together underwater, and coming up for air when they could no longer keep from giggling. I loved to see Geneva and her friends pal around the conference hotel like they owned it, taking turns hanging out in each other’s rooms, painting each other’s nails, folding origami and drawing silly cartoons. Geneva experienced the powerful feeling of connectedness when talking with people who know, who truly know our experience.
Sure there are a lot of hard parts of having a sibling like our sweet Jukie. It’s not that life doesn’t suck sometimes. I want my kids to be able to express all of the ways that Jukie frustrates and angers them. Those feeling are all inevitable and understandable. And I suppose that we could focus on the challenging parts of this journey. But we’ve made a different choice. We talk about the negatives, but then move on to the joy. In the presence of a heart (and face) like Jukie’s, how could we not?
The upsides of having Jukie for a brother are many. His siblings are required to find within themselves patience, compassion and understanding well beyond their years. When Jukie breaks or slobbers on four-year-old brother Truman’s toys, big sister Geneva sometimes intervenes, reminding Truman of Jukie’s intention. “Jukie didn’t mean to break your toy; he was only trying to see how it worked,” she’ll say to Truman. When Jukie bit Geneva hard on the stomach, Geneva pointed out to her pediatrician that Jukie got overexcited from the music Geneva was playing. Early on, Geneva learned to see the world through Jukie’s eyes.
Once when Geneva was ten years old, I picked her up from rehearsal for her performance as a cat in the Nutcracker. Her eyes were red and fiery. She was shaking. When I asked her what happened, she explained that one group of ballerinas had been calling the toy soldiers (all boys) names and degrading boys as a gender. Well, Geneva was outraged! She stood up and told the entire group of her peers that this was unacceptable. I asked her if she had been scared. “Of COURSE! But I HAD to say something!!” she said. Another time, while eating lunch at school, she heard some kids using the “R” word. My girl is so sensitive that she ran to the bathroom and cried, trying to summon the courage to go back and set these boys straight. Her friends came to her aid, and as a group they went back to address the matter. That is MY GIRL! Just about nothing could bring me more pride.
I can’t imagine a greater gift for Jukie to give his brother and sister (and Daddy and Mommy) than this gift of perspective, this deep sense of empathy and social justice that we carry out of our house and into the world. Jukie’s love and wisdom spreads far and wide.
