As the school holidays come to a close, a Queensland mother has shared an emotional plea to other parents on social media after she saw her daughter being excluded by other kids in public.
- A Brisbane mother has shared advice on how to interact with kids who have disabilities after witnessing how others treated her child
- Her daughter has Angelman syndrome, which affects the nervous system and can cause severe physical and intellectual disability
- The rare genetic disorder occurs in about 1 in 15,000-20,000 people
Jen Kyriacou said a week-long holiday with her 12-year-old daughter Lucy, who has Angelman syndrome, highlighted the “desperate” need for parents to learn more about how to interact with kids with disabilities and their families.
“Lucy is awesome, she’s very sociable and headstrong,” Mrs Kyriacou said.
“[Her] diagnosis of Angelman syndrome means she has complex communication needs affecting her ability to speak, a movement and balance disorder that affects her ability to walk, challenges with fine motor, intellectual impairment and a seizure disorder.
“The reactions we get from kids and parents to Lucy is tough to take, generally families don’t know how to react or interact with her.
“It’s hard to watch her be ignored and kids running away from her and this is an ongoing issue parents with kids with disabilities face all the time.”
In an impassioned social media post, which has been shared more than 2,700 times, Mrs Kyriacou shared her experiences and offered advice to parents unsure how to act.
“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,” she wrote.
“You would want it to change for her in some way.
“Mums and dads, if we arrive at a pool [or] park 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.
“You’re nervous your kid is going to be rude and would rather avoid it altogether.
“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.”
Mrs Kyriacou said most parents were not trying to be rude but were simply nervous of doing “the wrong thing”.
“If your child is staring, take the lead, say hello [to Lucy],” she wrote.
“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, but we love those kids.
“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.
“Lucy sees 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.”
Jen Kyriacou’s tips for interacting with kids who have disabilities:
- Remember, they’re just kids!
- Don’t leave the room, park or pool to avoid potential awkward conversations
- If your child is staring, take the lead and say hello
- If they are being rude or laughing, pull them up and show them the right way to interact
- My daughter sees and hears everything, kids with disabilities know what’s going on
- Don’t be scared to talk to parents, ask questions
- Parents of high-needs kids have to watch them like a hawk, it’s tough on mental health
- On that note, feel free to offer help if you see a parent struggling
Author and advocate impressed by Brisbane mum’s words
Carly Findlay, an Australian writer and appearance activist who also lives with ichthyosis, shared the post and said it really struck a chord with her.
“I think it’s really, really important to make kids comfortable around people with disabilities and facial differences and parents are often the cause of prejudice and fear,” she said.
“As Jen said, they do often take the kids away and stop that natural curiosity.”
Ms Findlay said she agreed with all the Brisbane mum’s tips and the way she approached the frustrating issue on social media.
“I want to see fewer stories about people with disabilities as a burden,” she said.
“I thought the post was very much child-centred, it celebrated Lucy, it didn’t erase her disability, it encouraged people to celebrate her and talk about disability, so Jen has set a great example.”
Parents thank mum for her advice
Mrs Kyriacou also asked fellow mums and dads not to be afraid to approach her.
“Don’t be scared to talk to me, ask me a question,” she said.
“The most wonderful young mum came to talk to me in the pool, after having Lucy be ignored for two days by everyone, it felt so good to be seen.”
The Brisbane mum said caring for a high-needs child was mentally exhausting for parents and the offer of a hand, or a cup of coffee, could make a huge difference.
“I was struggling to get her out of a pool and 15 people sat and watched me,” she said.
“When I’m trying to get Lucy out of a hard, physical situation, I would love someone to offer help at least.”
Mrs Kyriacou said she was shocked to wake up on Saturday morning to see how much her post had been shared overnight.
“I didn’t think it would go any further than my local disability community but it’s really heartwarming,” she said.
“There’s been such a positive response from not only families with kids with disabilities but also awesome people who are saying we just didn’t know how to connect, and you’ve helped us understand.”