Pages

Tuesday, August 7, 2012

MY SPECIAL DAUGHTER (AND HER SPECIAL BROTHER)

I was going through some paperwork and found this...I wanted to share it.

MY SPECIAL DAUGHTER (AND HER SPECIAL BROTHER)

My son, Jacob, believes that Disneyland is the happiest place on earth. For my daughter, Shira, it may or may not be a happy place, but Disneyland is certainly the place where she is happiest to be Jacob's sister. Because Jacob is autistic, we don't have to wait in line to enjoy any of the rides. Instead, we flash his IEP (Independent Education Plan, given by the public school system and attesting to his condition), Disney bestows a VIP pass on Jacob, we skip the line and get stared at by all the other guests. As we breeze onto the ride, Shira beaming, I routinely overhear people mumbling,

"What's so special about them?"
What is so special indeed?

In the language of our age, our son is "special" and our daughter is "typical." Ten years earlier, he would have been "disabled" and she, "normal." A decade passes, the compass shifts, the language moves. But having a special child often doesn't feel special. It feels hard, burdensome, relentless, a joke. When our twins were born, we had dreams of them as inseparable, a playmate always at the ready. We dreamed of their always having an intense connection with someone who would understand them on an intuitive level. Those dreams have withered, scorched in an inferno of special therapies, medications, procedures, and behaviors. Dare I cling to the hope that Shira will feel a connection to Jacob when they are grown? Will she make him a loving presence in her heart and her life?

Jacob is "special," and that will be Shira's burden throughout her life. Should any child have to mature in the shadow of that additional responsibility?  Jacob may be special, but Shira isn't typical, which is fortunate; she can't afford to be.
  • At three years old, Shira wanted to join me in greeting congregants arriving at Rosh Ha-Shanah services. I told her she could pick her own clothes, so she picked two items that expressed the fullness of her own unique personality: her Cinderella ballroom gown, and her arba knafot underneath (complete with tzitzit hanging out below). Thus attired, she reached up and shook hundreds of hands, wishing them a smiling "Shanah Tovah!" That is no typical child.
  • As a child of four, Shira found out that people die. During one of several conversations about mortality, Shira informed me that, when the time came, she would hold my hand and die with me. When I told her that I hoped she would live for many, many years after I did, she burst into tears. "Abba, I don't want to live if you aren't living!" That's not typical either.
  • At age seven, still a white belt in karate, Shira's instructor gave her a wooden board by mistake (only the higher belts get their own boards.) When her teacher tried to retrieve it, Shira was so adamant that he relented. Shira smashed it in two with her first kick.
Shira knows who she is, feels passionately, and lives without restraint. I can't help but suspect that, in part, she is so special because she has a "special" brother.

Once Elana (my wife/her mother) was reading Shira Mori's Story, a wonderful book about an autistic boy written by his wise eleven-year-old brother. Shira began to cry when we got to the parent's loving decision to place their autistic child with a foster family who could provide him with the care he needed. "We won't ever do that to Jacob, we will?" She cried, horrified at the possibility. We explained that each family was different, and had different needs. Jacob would stay with us.

Shira, in the middle of nothing in particular, announces that it is unfair that she has an autistic brother when none of her friends do. She plugs both ears when Jacob makes his nonsense sounds, his "silly talk." She rolls her eyes in disgust when her emerges from the bathroom with his pants still around his ankles. She deliberately picks the video that she knows will make him scream, cry, and fling himself to the ground.

But Shira is also the one attracted to friends who are distinctive and unusual children. She is the sister who hands Jacob half her french fries, without his asking, because she knows he likes them. Or her leftover brownies, Shira is the first to try to assure him that the hotel room is safe and secure, when it feels unknown and threatening to him. And if we discuss some future plan without mentioning Jacob, Shira is the one to insist, "Jacob too!"

Raising a child with special needs is challenge enough. But raising that child's sibling is a task requiring no less consciousness, planning, and consideration. In the press of an autistic meltdown, Shira's more subtle needs can easily appear less pressing. Because she is more verbal, her acting like a seven-year-old feels petulance when Jacob's problems rise to the surface. And, finally, because Jacob requires constant attention and assistance, it's easy to let Shira fade into the background. Her very sweetness, understanding, and sympathy make it easier to give her short shrift.

For all that, it is also true that having to make room for an autistic brother, mentally, emotionally, and in the prosaic details of her family, Shira has developed a depth and a caring that takes my breath away. Shira is a miracle in our lives. And like all miracles, she defies simple understanding, eludes neat categorization. There is no one quite like her. It turns out that she is, in her own way, special too. And isn't that typical?



(Rabbi Bradley Shavit Artson is the Dean of the Ziegler School of Rabbinic Studies at American Jewish University, where he is Vice President. He is the author of The Bedside Torah: Wisdom, Dreams, & Visions and Jewish Answers to Real-Life Questions.)


2 comments:

Amy Marie said...

I did my graduate thesis project on siblings of children with disabilities. They are indeed special people :) Ian is lucky to have such a wonderful sister watching out for him!

Anonymous said...

Alicia Katznelson Broth Beautiful!

Lauren Kemp What a wonderful story!

Jami Schultz Margolis Thank you for sharing that story!!!!

Helen Weisman Dagilis What a beautiful story

Tamara Jayne Flax Wonderful story.