Dear Moms, It’s OK to stare: Here’s how you can help make this an inclusive world

A few years ago, I was having coffee with my daughter Jessy when I noticed some kids from another table staring at her intently and whispering at each other with obvious wonder. My daughter, who was four years old at that time, stood out among other children with her wideset eyes and fused fingers.

You see, Jessy was diagnosed with Apert Syndrome, a genetic disorder that pretty much sets her apart in terms of looks. The kids couldn’t see that I was watching both of them like a hawk, waiting for what they’ll do next.

Immediately, I looked at the mom who didn’t meet my gaze and simply told her children “stop staring.” There was no apology from the group, although I wasn’t sure as well that I expected one. This is a scene that’s all-too-familiar for families with special kids. Like most awkward social situations, people can’t really decide how to proceed when meeting people who are vastly different from them—and it gets doubly difficult when there are kids involved.

This is why my heart, along with the rest of the world, went out to nine-year-old Quaden Bayles when a video of him wanting to kill himself for being bullied, became viral. Quaden (who has dwarfism) was the perfect example of what moms with special kids fear—that their children will be shunned, bullied, and basically rejected by a society they just want to be a part of. For us with loved ones born differently, Quaden may be a stranger with an all-too familiar circumstance, but believe us when we say we see our own sons and daughters going through the same predicament.

So how can you help? The truth is, there are no operating instructions when it comes to dealing with individuals who are differently-abled. We can only hope that our children will be given the same treatment and the same opportunities that would somehow give them a fair chance in life.

And for parents, it’s never too early to teach children (and even yourself) some disability-sensitive etiquette and simple guidelines that will build character and create a more harmonious environment where special kids can thrive and be genuinely happy. Here’s how to get started.

Let your children stare, but please encourage them also to ask.

We can never take away a child’s curiosity, so we understand if children tend to stare longer when encountering individuals who look differently from them. However, we would actually be grateful if you let your children ask us about our children’s condition. Allowing us to explain somehow makes us feel like you’re giving us a chance to introduce our child and have a genuine shot at making friends. Based on personal experience, you’d actually be surprised at how accepting kids tend to be when given the chance.

When your children gets scared, it’s ok not to push them to befriend my kid.

Believe it or not, we’ve encountered kids who got genuinely scared or cried upon seeing or encountering my daughter for the first time. The best thing to do during this situation is not to force your kid to stop crying and even force them to apologize for their behavior. You can try calming them down in a different spot and when they’re ready, we’ll be more than happy to get acquainted.

Please don’t ask me about “lihi.”

This is tricky, especially in the Philippines where people love and greatly believe old wives tales like “paglilihi,” loosely translated as one’s craving during a mom’s pregnancy. Although it’s easy to dismiss and believe that our children’s conditions are due to bigger powers of the universe which we have no hold of, it also makes some moms disregard what could be some serious symptoms of some underlying medical condition.

Don’t treat my daughter like a good luck charm.

A few years ago, in a posh mall somewhere in Manila, my daughter and I were doing some light shopping when a lady approached us and started wiping her handkerchief on my daughter, pinching her cheeks and said “God bless you” before leaving the store. I was too flabbergasted to react, but some of the sales ladies in the shop said the lady may have regarded my Jessy as “swerte” or could bring her good luck because of her condition. My daughter is not a charm, but yes we’re very lucky to have her in our lives. She’s just sweet like that.

Don’t focus on their differences, focus on what your kid and my kid have in common.

Pittipat Chupungco, mom of 10-year-old Nina who was also born with Apert Syndrome, shared that one of the best ways to make friends with differently-abled kids is to focus on interests that they have in common with other children. “One of the best approaches they’ve found is to find a connection between their child, who is differently-abled and the rest of the kids. In our case, I often point out to my daughter’s classmates the shows, movies or characters that she likes (and that I know children their age are into as well). Or I would say, ‘you know, she loves to paint! Do you like painting too?’ Basically, I want them to focus on the things they have in common rather than the differences they have with each other.”

And lastly, choose to be kind.

This last piece of advice applies not only when dealing with children who are differently-abled, but to all. Always choose to be kind, to choose friendship over rejection, to always find beauty in how unique we all are—don’t you think the world would be a much better place for everyone?

 

About the Author. Rainne is a full-time work-fromhome mom who takes care of her tweener son Anton and firecracker daughter, Jessy, who was born with a rare genetic condition called Apert Syndrome. She is a writer and digital marketer who runs the Instagram shop, Home Love Point.

 

*This article was originally published in Manila Bulletin on 29 February 2020 and republished by PSOD for Apert Syndrome Awareness Month on 22 June 2020 after obtaining permission from the author.