My Sister Has Down Syndrome – Can I Be Embarrassed?

As the mother of five kids, one of whom has Down syndrome, and three of whom we adopted, I have been advised/asked/encouraged repeatedly to write a book.

Well, I’ve written three books, countless blog posts and articles, poems, essays, letters, notes, and phone numbers. But this is one area of my life I’ve never been able to put to paper. As I feel a book should start from the beginning, this story remains untold primarily due to my inability to revisit the emotional upheaval of the beginning, let alone describe it with any kind of coherent flow.

So I’ve decided to start in the middle. In time, perhaps I will be able to touch on glimpses of those early days. But for now, suffice it to say that, thirteen years after the death of the old me, I’ve racked up some pretty good (and bad) miles on this path, and have no aversion to sharing some of the more poignant lessons and memorable stories in the hopes that I may both entertain and connect with those who would like to understand a little better the journey of life on the other side of the disability fence.

I’ll call my daughter with Down syndrome ‘Thing 1.’

Before you get your gitch in a knot, let me explain. Thing 1 was our second child, born five years after the first. (She wasn’t Thing 1 yet.) But when she turned 5, we adopted a sibling trio who became our new 1, 3, and 5 of 5, making her number 4, and older brother number 2. There are 7 years between 1 and 5.

Between 4 and 5, however, there are but ten months. Being in the same grade – and until this year, the same class – at school, they are very much like twins. Complete with all the shenanigans that come with a pair of mischief-makers. Shortly after number 5 settled in, the two quickly became Thing 1 and Thing 2.

And so it is Thing 1 who has Down syndrome.

When T1 was a toddler, still non-verbal, she would often find herself filled with an anger that could only come from the complete frustration of falling victim to whatever adult happened to want something other than what she wanted, while being completely unable to express her objection. At home and in public, these sad displays of temper put a halt to all activity around her while she tried desperately to make herself heard.

I learned quickly that there was no getting through to her until I could get her to calm down. To get her attention, I would plunk her down on her bum, with a firm finality, and wait. Regardless of where we happened to be at the time.

The instance that prompted this post took place at my fourth grader’s school. In the hallway. Directly in front of the gymnasium doors. During the spring open house just as the talent show ended. I stood over her to protect her from the feet of the crowd as she voiced her displeasure over her despair. Some parents gave me the dirtiest looks. Others were more understanding. Most were patient. And anyone who knew me, just stopped and said hi as if there were nothing out of the ordinary. After a few minutes, T1 calmed and came back to her old self. I picked her up, hugged her tight, and set to work trying to explain to her why I hadn’t let her into the gym in the first place.

As we walked home from the school that night, my son hesitantly asked to speak to me without hurting my feelings. We have always had an agreement – a ‘permission to speak freely’ code, if you will – so that we could talk about things that made one of us a little edgy. The conversation went something like this:

“Mom, you know I love T1, right?”

“I most certainly do know that. What’s bugging you?”

Deep breath, big tear ready to let go of gorgeous long black eyelash. “When she was on the floor and you were standing over her all my friends went by and I was really embarrassed. I wanted to pretend I didn’t know you or T1. I wished you would both just go away.” Tear jumped down his cheek.

“Ahh.” I understood immediately. “And you feel terrible now for wishing you didn’t have T1?”

“Yeah,” he admitted, breaking down.

Taking full advantage of hug-time, I sat on the grass with him while Dad continued on with T1 perched happily up on his shoulders.

“It’s like this, Babe,” I explained, “most of your friends have little sisters, right?”

He nodded.

“Do you think their little sisters – or brothers – have ever embarrassed them?”

“Yeah. I know they have.”

“So having a little sister can be embarrassing.”

“But T1 has Down syndrome.”

“Oh. So you think that means you can’t get mad at her?”

“Well, yeah.”

“Wrong, Sweets. Sometimes, she’ll do stuff because she’s a little girl. And sometimes she’ll do stuff because she has Down’s. Our job is to figure out why she’s doing what she’s doing. And if she’s doing something because of the Down syndrome, then we have to be a little more patient, a little more helpful, and keep our sense of humour. But if she’s doing something because she’s your four-year-old little brat-of-a-sister, then it’s perfectly okay to be embarrassed and get mad at her.”

He looked at me with disbelief.

“So, do you think any of your friends’ little sisters have ever thrown a hissy fit in front of everyone because she didn’t get her way?”

“Yeah.”

“Yeah. It’s a little girl thing. How I deal with T1 might be a little different because of the Down syndrome. But back there, she was just being a brat because she couldn’t have her way. So tomorrow, it’s okay to complain about her to your friends.”

He looked incredibly relieved. We continued on our way home.

“I guess we should start learning a lot more about Down syndrome so you’ll know the difference next time. You know, in case she does something funny and you want to laugh at her.”

“You mean it’s okay to laugh at her?”

I laughed at him. “Only if she does something funny!”

“Thanks, Mom.”

“No, thank you, Handsome.”

In the nine years since that conversation, he has aced the whole Down-syndrome-versus-sister-thing. He still remembers that advice clearly, and uses it regularly. Not sure where it came from in the first place. But sure glad it showed up when it did!

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