Time moved slowly in our house. Everyone else’s children grew up quickly, became dentists and lawyers, and most of all, best friends as siblings often do, later in life. Our lives were different. We moved forward in small increments, too often unnoticed, too often unfelt. And our goals were more simple -- get James through sixth grade, be able to go out to dinner as a family without being asked to leave because the kids had a screaming match at the ice cream bar. . .
Once Emma asked me why James was so mean to her.
“He is always mad at me,” she complained once, as I was driving her to her Polliwog swim lesson. “I love him, but he doesn’t love me.”
I was stunned at how succinctly she had put it. I didn’t think I would have to tell her so soon, when she was only four years old. I thought I would have years before I would break the news to her gently, preferably with a psychologist and her father in the room, with lots of hugs and tears and gentleness. But, I took a deep breath and decided to try to explain Asperger’s Syndrome to her.
“James is special, not sick, but special,” I said into the rearview mirror. “It’s not like a cold or the flu. It’s a special feeling in his heart and in his mind. He feels things very deeply, and when he gets mad, he gets really mad. When he get sad, he gets really sad.”
“Is that why he yells a lot?” Emma asked. “Cause it is really loud.”
“I know it is,” I answered. “He is afraid.”
“Of what?” Emma asked.
“He is afraid of a lot of things,” I answered. “He is afraid of loud noises, new places, foods that are spicy…”
“And slippery,” Emma added. “He hates eggs.”
“Yes, he does,” I said with a laugh. “You know that he’s different. He can’t accept things like you can.”
“Well, he should at least accept me,” she said in all the beauty of four year old wisdom. “I’m his sister.”
“He should,” I agreed. And then the tears came. Not from Emma. From me.
I bought her books about Asperger’s Syndrome. I explained that he needed to go to a lot of doctors, and that she could either get mad about all the long trips, or she could look forward to all the cool toys they had in the waiting rooms.
For the most part, she adapted beautifully, and when one of her friends asked why he got so angry all the time, Emma just said, “He has Asperger’s. Get used to it.”
Still, we didn’t host sleepovers at our house. As soon as I explained to her friends’ parents that he had Asperger’s, most of them would politely invite her to their house instead. Emma also had to endure the fact that he didn’t want to go to most of her birthday parties. “It’s not about you,” I would console her. “He just doesn’t like all the noise and all the people.” Emma would cry, but I heard her tell him, “I will save a piece of cake for you and bring home a goody bag for you.”
The note that touched my heart the most though, was one she wrote years later to him in one of his birthday cards. Itsaid, said, “I hope you have some good days.”
I loved the evenness of it, the acknowledgement that he probably wouldn’t have ALL good days, but that he could have some good days. The “some” just did me in. She knew him, she loved him, and she accepted him. Perhaps one day they would be close.