To the Woman Who Said I Didn’t Have the Experience to Help My Brother

To the Woman on the Bus,

You probably don’t remember me; it’s been a while. But about 15 years ago, you taught me a lot. You taught me that even though our relationship may be different than other siblings, at the core of it all, I’m my brother Scott’s sister, his only sibling. You taught me that despite how hard a life it can be sometimes (most of the time), being Scott’s sister has made me a stronger and kinder person than I would have ever been had I grown up without a brother with severe developmental disabilities.

You taught me my relationship with Scott will shape the character of the woman I become.  And I’m luckier for it.

We were leaving one of the Disney World parks and heading back to our hotel room. Disney World was a regular vacation our family took. Most, if not all, of Scott’s communication was through a spelling board, but he always made it clear when he wasn’t into something. Disney World was one of the few places we knew he loved. That particular day I was trying to give my parents a break and had taken the bus into a park with Scott and a friend who was on vacation with us. About three hours in, we had reached our limit, and I could feel an anxiety attack coming on. I knew his signs, and it wouldn’t be long before the hand-wringing started along with loud yelling.

About five minutes into the bus ride, he was in a full-blown panic. This was before there was a lot of information out there about low-functioning kids. This was even before everyone had cell phones. My parents had worked hard to treat Scott like any child was treated, and as a family, we had created coping techniques in case an “episode” happened in public. To be honest, there weren’t many, and most of them were just getting through the worst parts until we could get somewhere safe and quiet.

After a few minutes, you came up to us. You leaned down and started to talk to Scott. You tried to grab his tense fists; you tried to give him a hug. This was one of the first times it was just Scott and me while he was losing control, and it was the first time a stranger had approached us without our parents. I had no idea what to do.

When I asked you what you were doing, you simply said, “Well, I teach special ed, and you clearly don’t have the experience needed to deal with a behavior like this.” It’s been 15 years, and I still remember what you said.

But I did know what to do. I did have a plan. Maybe it wasn’t extensive and maybe it was behavior triage, but I knew what I had to do. I knew Scott hated being touched when he was in the midst of a behavior. I knew if I could just make it to the resort, I could let him walk it out after we got off the bus. I knew if I could just get to my mom and dad, it would be OK.

But you didn’t ask permission. You didn’t even say hello before you tried to take over. Looking back, I’d like to think you felt you were being helpful. But being helpful would have been taking the time to know us before you stepped in. Being helpful would have been sitting next to a scared 17-year-old girl and reassuring her that no one was staring; and even if they were, who cared? Anything other than what you did would’ve been helpful.

I have to admit I probably could have handled you better. I probably didn’t have to tell you I would tell Scott to kick you in the shin if you didn’t back off. I could have done a lot of things differently that day.

But I was kid. You were the adult.

I never worried about speaking up for Scott or myself after that. If I could handle a Disney World bus ride on a hot summer day, I could handle pretty much anything for my brother. And I’ve been able to handle you — in the many forms you’ve shown up in our lives since.

Scott still can’t tell me he loves me with words or drive to our apartment when my mom gets on his nerves. I still get annoyed he has to listen to loud music at the dinner table or worry when my parents don’t sleep for a few days because he’s having a rough month. Our relationship will continue to be complicated and challenging as we get older. And Scott will continue to shape the person I am, even the mother I want to be one day, and that’s a good thing.

Because till the day I die, I’ll be Scott’s sister. And I’m OK with that. Just look at his smile. Wouldn’t you be, too?

Yours,

The Girl From the Bus