Mum Jen Kyriacou shares what everyone should know about inclusivity and how a little compassion goes a long way.
We know that motherhood is tough. But caring for children with disability? That requires some extra supermum powers. That’s why it’s important for society to step up and be the support system families with special needs children can rely on as they navigate all the challenges – and beauty – that come with raising a child with special needs. Through social media, Jen Kyriacou, mum to 14-year-old Lucy (who has Angelman syndrome), has reached out to the rest of the world, in the hope that people will give families with high needs the acceptance and inclusivity they deserve.
An open letter from Jen Kyriacou
So after a week away with our gorgeous girl, it came to my attention that some members of the general public are desperately in need of some guidance around interacting with kids with disabilities and their families. Just sharing how I feel, but perhaps other mums feel the same…
1. Kids being kids
First and foremost, they’re just kids. They just want to play with your kids. They may think you’re funny and want to interact. It’s really as simple as that.
2. Please don’t avoid us
Mums and dads: if we arrive at a pool or a park and you suddenly round up your kids with a “We’ve just finished” or “Kids, it’s time to go and get a snack”, we know what you’re doing. We see you. You’re nervous your kid is going to be rude and would rather avoid it altogether. Seriously, my family can clear a pool in five minutes.
3. Be respectful
If your child is staring, take the lead. Say hello. She may say hello or she may ignore you, but you’ve shown your kids what to do. I swear I can count on one hand how many kids said hello to Lucy this week and we encountered up to a hundred in the resort. I love those kids; they warm my heart.
If your child is being rude and running away, laughing, pointing or staring with an ugly face, intervene and quietly pull them away and tell them that’s rude. You’d do it if they did it to a neurotypical kid! Don’t run away from this opportunity to show them the right way to interact. This world will never get better for people with disabilities if we don’t teach people to respect others.
My daughter sees everything and she hears everything. I hear it and I see it. I have the world’s best poker face, but the family sees it all. We push it down to the deepest parts of our hearts because if we acted on this, we would be arrested repeatedly.
4. Ask me anything
Don’t be scared to talk to me or ask me a question. The most wonderful young mum came to talk to me in the pool, turned out she had grown up with a young man with cerebral palsy and wanted to know about Lucy. After having Lucy be ignored for two days by everyone, it felt so good to be seen.
5. We appreciate any help
We’re totally jealous of all the parents sitting around the pool/park chatting without having to watch their kids like a hawk. Lucy took her seizures to a new level this week with one in the pool, so our safe space of putting on her floaties and letting her play is now out the window. We’re exhausted having to watch all the time. There’s never a moment outside the house we’re not having to watch. We’ve been watching her obsessively for 14 years. Not great for your mental health.
On that note, feel free to offer some help. I’ll let you know if I’m okay, but I’ll also let you help if you can. When I’m trying to get Lucy out of a hard physical situation, I would love someone to offer help at least. I was struggling to get her out of a pool and 15 people sat and watched me. Other than that, because we’re having to be so vigilant, maybe offer to get a coffee? I would have killed for a margarita from the pool bar but just couldn’t take my eyes off her to make that happen.
I know it can be hard with kids, I get it, really. But imagine if that was your child that you saw ignored and run away from over and over again. You would want it to change for her in some way.
As parents, one of the most important lessons we can teach our kids is compassion. The sooner they learn this, the brighter the future looks for everyone – with or without a disability.