My "other" child

It wasn’t supposed to go like this.

I was thinking of writing about my “other child,” the non-2E kid, the chameleon. I thought I might write about the people over the years who have asked me if my “other child” is gifted, too. I could write a book about "Bilbo” – how, when he was eleven months old, he grabbed my face with both hands and asked “Mama, is that a car over there?” -- when I had no idea he could talk; or how I sent him to pre-school when he was two and a half years old, and in no time he had full control of the teachers and the playground.

Instead, I want to tell you about what B has been doing over the past few weeks.

Two weeks ago, my older son’s tics spiraled out of control. For six hours one day, Origami suffered a steady attack of violent, major tics that followed one after another in five to thirty-second intervals. O could not stand; he writhed, screaming in pain, unable to control his body. B and I took turns holding O down so he would not injure himself. While B held his brother, I scrambled to find help.

While I held O, Bilbo found O’s favorite stuffed animals, his pillow, and his blanket, and brought them to us. Then B rolled up another blanket and fashioned a cushion for his brother’s neck, to minimize the impact and bruising from neck tics. B grabbed another pillow and some spools of wire, threw the pillow on his brother’s stomach, and laid himself across O’s midsection. Then the boys worked quietly on wire sculptures while Bilbo talked to O to distract him from his pain and ticcing. I began to feel as if my help was not really needed.

Bilbo just turned ten. Origami’s issues have had a big impact on B as well as on the rest of the family. We try to protect B and give him his own space and his own share of attention. We take Bilbo to support groups for siblings of children with TS. But while B is a remarkably resilient person, the effects of living with a sibling who has special needs are evident.

B rarely invites friends over for playdates, waiting for times when O will be out. For years, B has defended his brother against teasing and ridicule. Although we have not expected B to help care for his brother, B has assumed that role himself. As O’s tics worsen, B is always watching for situations that might trigger violent tics: B takes his brother’s hand at the mall when he sees O trembling before a tic. At tae kwon do, B runs over to pick O up off the floor after every major tic.

And so it goes. Last week when the boys and I went for our daily run, I had to talk B out of trying to run with his arm around his brother. I assured B that I was capable of helping O, too, and that if they tried to run while so intertwined, odds were that both of them would end up falling. At home, whenever O tics B drops what he is doing and runs to help his brother. People who see Bilbo supporting his brother are impressed by B’s maturity and thoughtfulness. I am proud of B, too, but I also see signs of stress and strain in someone who really should not have to be dealing with these issues. B needs time and space to be his own person, not his brother’s caregiver.

So, Sunday was a very important day; it was the first day of the spring soccer season. Soccer is the one activity Bilbo has that is all his. B has been with most of his teammates for nearly three years; they give B his own little slice of “normal” life. Soccer is the most important part of Bilbo’s schedule. He needs and craves the time to run around, yell, sweat, and just be a boy.