The day my daughter told us her disability is love

By Amy Silverman
@amysilvermanaz

I’m pretty sure that if I gave her the chance, my 14-year-old daughter would make out with me. Tongue and all.

That’s how much Sophie loves me. Don’t get me wrong, she hates me too, sometimes, in that brutal way only a teenage girl can loathe the tragically uncool mom who makes all the rules and tries to sing along to Taylor Swift in the car.

Mostly, though, she loves me. She always wants to cuddle—more with me than with her father, she says he’s too bony—and I don’t know when it started but now we’ve got this thing where I let her peck me on the lips. Sometimes I feel her linger and I creep out because—well, you know why.

I pull back quickly and smile and then I get super-serious and ask, “Who do you kiss?”

And she always says, “Only you, Mama. Only you.”

Someday, I know, Sophie might have a boyfriend (or a girlfriend) and then, yes, they will kiss—and other things. I’m fine with that. It is one of my greatest wishes for her.

It’s the rest that keeps me up at night. For most parents, there’s no need to warn your teenage daughter not to kiss strangers, or people you don’t know very well, or who are otherwise inappropriate kissing partners.

But Sophie is different. She’s got curves and her period and all the emotional trappings of a young woman, and yet in many ways she will always be a little girl. Sophie has Down syndrome, the most common genetic difference, one always associated with intellectual disability to some extent.

For Sophie that means she attends a public high school with her typical peers, but she has an aide to help her navigate both the curriculum and the social aspects of school. After school each day, the aide walks Sophie to the parking lot, where our nanny takes over until my husband and I get home from work. We pretty much never let Sophie out of our sight. It’s exhausting.

And, apparently, necessary.

When I heard that National Public Radio was launching a multi-part series on the sexual abuse of people with intellectual disabilities, I was only surprised that it took this long for someone to focus on this aspect of the #metoo movement.

According to the promotional materials for the NPR series, a person with intellectual disabilities is seven times more likely to be sexually assaulted. I don’t believe that for a second. The number’s got to be way higher.

People with intellectual disabilities can’t always speak up for themselves. Often, particularly as adults, they are cared for by virtual strangers—strangers who are underpaid, undertrained, and unsupervised. It’s the easiest recipe for disaster.

And then there is another element—love. Or the desire for it, anyway. Like the rest of us, people with intellectual disabilities have the capacity to love.

And some people with intellectual disabilities even have a little more capacity to love. Sophie’s one of them. It’s a cliché about Down syndrome that holds true with my daughter—although it must be added that she doesn’t love everyone. Far from it. But if you do happen to be the object of Sophie’s affection, trust me, you’ll know it.

Last summer, Sophie’s older sister Annabelle attended a week-long camp that focuses on diversity. We picked her up from the bus on the last day and our little family drove to dinner. Annabelle was full of stories about what it meant to be gay, African American, Latino, Jewish, rich, poor.

I asked if there was any talk of disability. “Just for, like, an hour,” she scoffed. At 16, Annabelle is already an activist, thanks to her sister. “And not about Down syndrome. Only autism and ADHD.”

There was an uncomfortable silence in the car, as the words “disabled” and “Down syndrome” hung in the air. It was an awkward moment. Beginning when she was eight, Sophie has been telling us that she doesn’t want to have Down syndrome. We work so hard to include her in every aspect of our lives, and she works to be included, but sometimes we’re all reminded that Sophie is, in fact, different. My husband Ray, not a fan of awkward silences, jumped in.

“Oh, you’re not even disabled, Sophie!” he said.

Sophie’s response was quick. “My disability is love.”

I caught my breath. Not because I’m sure Sophie knew exactly what she was saying, but because even if she didn’t, there was so much truth to her words.

Sophie is right. Her disability is love. If Sophie loves you, watch out, because a torrent of emotion is headed your way and it might be in the form of a totally appropriate hug, or it might happen in three dozen texts in the middle of the night. If you don’t love her back, she will keep at it until you tell her to go away, and even then she’ll probably still keep at it.

Sophie loves a lot of people—her sister, father, grandmother, her nanny, her best friend from kindergarten, her eighth grade social studies teacher. She loves me most of all, a break-down-the-door kind of love I never would have imagined, let alone craved, and now can’t live without.

No one has taken advantage of Sophie’s love, not so far as I know. But even without hearing the stories on NPR, I know—and have known for a long time—that it’s a very real possibility. Probably more likely than not.

I let my daughter kiss me on the lips even though I know I really shouldn’t. I’m terrified in equal parts that she won’t ever find real, grown-up love—and that she will, but that it won’t be the right kind.

I wonder if I can be enough for Sophie. I wonder what could happen to her when I’m not around, or someday, when I’m gone. I wonder if now, before it’s too late, I should try to teach her not to love, if that will keep her safe.

But without the possibility of love, that doesn’t sound like much of a life.

Amy Silverman was born and raised in the sometimes scary state of Arizona. She escaped—but returned and, to her great surprise, is living happily ever after (knock wood) with her husband Ray, daughters Annabelle and Sophie, and a revolving cast of pets. Amy’s book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published in 2016.

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