The Public Is In Desperate Need Of Guidance

So after a week away enjoying the sun and swimming with our gorgeous girl this week, it came to my attention the general public is desperately in need of some guidance around interacting with kids with disabilities and their families. I will premise this is just how I feel, but perhaps others feel the same…

1. 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. Mums and dads – if we arrive at a pool, park etc. and you suddenly corral your kids with “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. 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.

4. If your child is being rude and running away, laughing, pointing, 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.

5. She 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.

6. Don’t be scared to talk to me, 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 CP and wanted to know about Lucy. After having Lucy be ignored for two days by everyone, it felt so good to be seen.

7. We’re totally jealous of all the parents sitting around the pool/park chatting without having to watch 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. And she’s 12 years old – we’ve been watching her obsessively for 12 years. Not great for your mental health.

8. 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. On that note, because we’re having to be so vigilant maybe offer to get them 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.

I’ve made this public, feel free to share.



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