The invisible mom

By Sue Robins

In the foyer of every elementary school there's a gaggle of moms standing in a tight circle, waiting to pick up their kids. You'll find these same circles at mom and baby yoga, the new moms' group, the kids' hip hop class and community soccer.

In the 10 years I've parented my son Aaron, I’ve never cracked that circle.

I've walked past that circle hundreds of times and nobody has ever shifted—ever so slightly—to give me room to join in.

I’m the invisible mom. You’ve seen me—the mom with the son with the visible disability.

This is the part about inclusion that’s hard. Most days I breeze past, pretending I don’t care that I’m not standing with those neighbourhood moms in their Lululemon outfits, baseball hats and ballerina flats. When I’m feeling vulnerable, I put my own hat on and charge past, willing myself not to look up lest my eyes fill with tears.

This is what different feels like—it lives tight in my chest in the place where tears are born. I’m so intertwined with my son Aaron—and protecting him from this pain—that my pain gets all muddled up. If I know I’m different as a mom and I don’t belong, how soon before he knows he's different as a kid? Or does he know already? I shake my head and file that unbearable thought away.

I once heard the head of inclusive education for our school board give a presentation about building friendship opportunities for our children. “You parents of children with special needs need to make an extra effort,” she said smugly.

That comment infuriated me at the time and it infuriates me now. She told us to host "extra fun" parties at our house and invite children from the classroom. Her message was that we need to overcompensate for our kids, because they'll be excluded by parents of typical children.

So the reason my son has had only one birthday party invitation from school in the past two years is because I’m not extra-fun enough? If I was super-fun, would my requests for play dates for Aaron get answered?

Instead, my little notes and contact information slipped into backpacks are ignored, and I'm at a loss for words to tell Aaron as to why Matt isn’t coming over to play.

Aaron’s teacher tells me the kids talk in the classroom about inviting Aaron to their birthday parties. But I dig through that damn backpack every evening, and I’ve never found an invitation.

If I could summon up all my boldness, I’d march right up to that circle of moms and ask why they're ostracizing my sweet, vulnerable son. I’d ask them if they’ve ever been left out and how that feels. I’d ask why they are doing that to my 10-year-old boy, who loves Bey Blades, Lego and X-Box just like their boys do. I’d tell them not to be afraid of Aaron, and that if they can’t understand him when he talks, I’ll help translate. That I’d supervise on the play date to make sure things went well. That Aaron is a little boy who just wants to have friends.

It's as if our society has no responsibility to include those who are different. Is it only up to us, as parents of children with disabilities, to force ourselves into their circles and demand social inclusion for our children? Remember: a community who excludes one is not a community at all.

I do know that Aaron needs to feel beloved. (And so do I). Because that’s what we all crave in this world.

Late Fragment
By Raymond Carver

And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.

Sue Robins is a writer, speaker and mom of three in Edmonton. Her youngest child, Aaron, 10, has Down syndrome. Sue consults on family-centred care with children's health centres, and has spoken to health professionals around the world about partnering with families, the value of peer support, and how to meaningfully engage families in the health system. Two of her essays about Aaron have been published in the Globe and Mail.