Special Needs Siblings

When my daughter was four years old, she received an end-of-the-year scrapbook from her preschool teachers. There, amidst the anecdotes of pre-reading Max & Ruby stories, the child-created observations of flower growth in the classroom garden, and reports of endless water play with friends, I read the following: “During the year, Josie has shown enormous anger at the illness of her baby brother, as well as guilt and remorse over that anger…” The sentence went on but I could not read any more. Instead, I closed the book, my hands trembling, and I thought, not about the teacher, but about myself, How could you not see this? You fool.

The next time my daughter asked to see the scrapbook, I had blacked out those words. Because even if they were true, I did not want them there for her to see. This brother of hers, with his illness and complications, had to be more than a source of anger and guilt. Her sibling experience needed to count for more than that.

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I grew up in a large family, two brothers and a sister. For me, the sibling experience was practically totemic in its necessity and I knew as soon as my daughter was born, it would be important for her to have the same. A brother or a sister, someone to keep her company after we were gone, a legacy of shared genes and memories. That quest for another child brought us our son, and gave our daughter a very atypical sibling experience, eliciting the editorial comments from her preschool teacher, and marring an otherwise perfect scrapbook with my daughter’s difficult reality.

I have several friends who have one typically-developing child, and another with special needs. One of my friends will say, apropos of her typical son, “Look, none of us signed up for this. He’s dealing with it the way we all are, he’s coping.”

I appreciate my friend’s candor and her honesty. But my own journey as the mother of both a typical child and a special needs child is more conflicted (as I’m sure my friend’s is too). I feel guilty about my daughter’s embarrassment at her brother’s many behavioral outbursts, his blindness, lack of speech, delayed development, guilty that a typical sibling experience is not in the cards for her, and, finally, guilty that I can’t always acknowledge those challenges. Like the words in that preschool scrapbook, sometimes I have to black them out and turn away.

At night, in bed, my daughter will ask me a lot of questions about my own siblings, their pet names for me, the things we did together growing up. I sometimes wonder if she’s trying not only to imagine the life I had, growing up, but also the life she might have had, if her brother had not been born seventeen weeks early, weighing only a pound.

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The life of a special needs sibling is unlike any other. My oldest special needs mama friend has two daughters, one a typically developing three year-old, the other a seven-year old with cerebral palsy. Recently, when the three year-old started preschool and was having a hard time being without her mother, she used an outrageous set of excuses as to why they should call her mother to take her home. “I’m having seizures,” she said. “I need to go to the hospital. My G-tube is leaking!”

One Christmas, when my son was still in the NICU and my daughter was three years old, the doctors offered to let her inside the unit to visit — a very rare occurrence for siblings her age. Josie gave me a long look and asked me, “Why?” Why would she want to go in there and see Evan? What difference did it make? “But Santa’s in there,” I said, indicating through the glass door an older man in a beard and Santa Suit, leaning over Evan’s isolette.

“Santa doesn’t belong in the NICU,” she said.

It takes enormous reason — and outsized coping skills — for a child to navigate these waters, those of seizures and G-tubes and visits from Santa in the NICU. Logic, and solid sense of self, have carried my daughter through some tough years with her brother, those spent in doctors’ offices and hospitals, therapy sessions and clinics. I still don’t know that I agree with her preschool teachers about all that anger and guilt, but I do know that she has adapted to this strange world as only a child can, going so far as to use rubber gloves as toys or G-Tube adapters for water play. Every once in a while she’ll come to me with some device she’s found in Evan’s room — an empty syringe, perhaps, or a nebulizing cage — and ask, “Mommy, can I use this?”

Just like my friend’s three year-old with her outgrown excuses, the seizures and the need to go to the hospital, my daughter copes by expanding her own horizons as a child to incorporate this special needs world. Last week, she went through a therapy session blindfolded, “To see what it was like,” she said, “to be Evan.”

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It would be easy to stay in the place of guilt, where being a special needs sibling is simply a raw deal. Sure there is the surreality of seizures, G-tubes and therapy sessions. But then I remember Piaget’s concepts of assimilation and accommodation, and marvel at how beautifully my daughter has mastered these concepts. Often, after spending the day at a friend’s house, one where a typical younger brother resides, my daughter will come home to report, “I’m so glad I don’t have a sibling like that.” In other words, one who follows the girls around, throws a punch or two, demands the TV remote. A typical brother.

And then there are the basics: my daughter is growing up with an extra measure of compassion and the knowledge that the world is not perfect. She knows that some people don’t walk or talk but that this doesn’t always interfere with other abilities. She is the first to take pride in her brother’s achievements, and, because she is human, she is also the first to say, at the end of a long evening of “Evan’s annoying Pooh CD,” as she calls it, “Isn’t it time for Evan to go to bed?”

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Beyond the coping and the jealousy and the simple challenge of navigating these waters, there is, finally, my pride in my daughter and her own journey. She is a marvel of a person, neither false in her affection for her brother, nor unstinting in her praise of him. “He said hello!” she announced the other night, after reading a communication log from Evan’s school. “Mommy, did you read this? Evan said ‘hello’ at school today!”

Finally, she is simply her own person, which is the best accomplishment of all. After reading about Evan in this column one morning, Josie came to me and asked softly, “Are you going to write about me some day?”

I can’t imagine, in my own growing up, having to compete with a child like Evan for my mother’s attention. I know of adults with special needs siblings who themselves remember times in their teen years that they resented their siblings, the stress it caused their families, the responsibility they feel for their brother or sister in adulthood. I try not to think about this future as I tell my daughter, “Yes, yes, I’m going to write about you. What would you like me to say?”