'Five years ago, an innocent schoolyard game changed my son's life forever.'

Cooper was playing an innocent game of tag in the schoolyard when it happened.

The nine-year-old fell over and hit his knee on a step. Not feeling badly hurt, Cooper dusted himself off and rejoined the game with his pals.

When he went home that afternoon, he told his parents that he had "a bit of a sore knee". They inspected it, but couldn't see anything wrong.

Things went on as usual. Until four days later, Cooper woke up in screaming pain.

Watch Dr Joshua Pate on why pain feels different for everyone. Post continues after video.

"We couldn't touch him. He wasn't able to walk at all," his mother Melinda Smylie told Mamamia.

"It was quite scary, not only for a nine-year-old, but for us as parents as well."

Eventually, Cooper was diagnosed with a rare condition called Complex Regional Pain Syndrome — chronic arm or leg pain developing after injury, surgery, stroke or heart attack.

"It is very hard to diagnose, there's no known cure for it, and treatment is difficult," Melinda said.

And it's easy to see why. According to leading Australian children's pain researcher Dr Joshua Pate, the health system is set up to "pair pain with a damaged or diseased body part".

"From the get-go, this makes no sense," Dr Pate told Mamamia. "It's misleading to think this way. Even in a highly controlled laboratory setting, pain and tissue damage do not correlate well.

"There are so many things that can turn the volume of our pain up and down. And so, coming up with a diagnosis, given all of these complexities, becomes very challenging!"

Cooper's incident was five years ago — and the beginning of a long and arduous pain journey for the now-14-year-old. School, for example, would never be the same.

"Cooper missed lots of school — many, many months — and spent quite a lot of time in hospital due to the pain," Melinda explained.

"He wasn't able to walk, but he also wasn't able to be touched at all. So that meant going to school for him was an impossibility, because he couldn't be touched. He couldn't have the air even around him move at all. 

"As you could imagine, in a busy classroom or in a playground, they're running around and they're having fun and they're playing. For Cooper, that was an impossibility, because we couldn't stop children moving around him, and we couldn't stop them touching him accidentally the way kids do."

Of course, it was hard to explain to his friends why they couldn't play with Cooper. Even teachers and parents struggled to understand.

"Most doctors and allied health staff have never even heard of his condition, either," Melinda said. "It made it really difficult to get a clear understanding of it ourselves, to be able to explain that to the school and to his teachers, and [to] find a way to explain that to children in a way that they could understand."

Interestingly, though it is widely misunderstood, chronic pain in children is more common than you might think.

"A recent study found that there are approximately five children in each classroom facing these challenges at some point. It's quite overwhelming," Dr Pate shared.

Despite this, conditions like Cooper's are often overlooked in classroom settings due to their hidden nature.

"If there's no visible difference with how Cooper looks, then how do you kind of expect a child to understand that you can't touch them?" Melinda reasoned. "He looked like he did before he had his incident at school.

"It didn't make sense to parents and teachers around us, because they couldn't see anything. People would just go, 'But he looks fine. Why can't he get up and run and play?' And we'd say, 'Well, he can't walk at the moment, and we can't touch him, and he can't handle even just the air around him moving at all'. And that makes no sense to anybody.

"If you see a kid with a broken arm and it's in a cast and they're wearing a sling, it's that visual reminder that the child has something wrong with them. But you can't see something like CRPS. I guess we need those visual reminders as humans."

The parents tried to get Cooper back at school, but to no avail. 

"He could only last very small amounts of time, maybe the first little bit of a morning, an hour or so, and then the pain would become too unbearable, and we'd have to go in and pick him up anyway," Melinda told us.

"We found it really hard, and the school that Cooper was at would not adapt to Cooper at all, even when he was in his wheelchair."

When it comes to chronic pain in children, data shows a 22 per cent drop in school attendance, as per Dr Pate.

"This has a long list of other impacts down the track," he said. "But we also see big effects on mood, academic performance, friendships, sport engagement, hobbies, mealtimes, and of course, the whole household has to navigate these challenges."

As he missed school, Cooper's parents watched his education, social life, and mental health suffer. They knew something had to be done.

"After a couple of years, we made the decision to homeschool Cooper. This provided him with the safest environment to be able to be in, because we could control those outside elements, touch and air," Melinda said.

"It's been amazing. We are able to make sure all his education needs are met and his health is a priority as well for him, so he hasn't missed out on his education because of his condition."

Socially, Cooper has made friends through his online presence. Here, he shares his passion for fishing on his social media account, which has accrued more than 50,000 followers.

"He has found some incredible, understanding peers through social media that he now gets to meet face-to-face as well," Melinda told Mamamia.

"For parents, when a child can't leave the house because he's wheelchair bound or bed bound, without that social connection online then it would be a very different story for Cooper, and we have safely encouraged him to develop his connections that way."

As Cooper navigates life with this condition, his parents have also had to learn how to care for their son — with limited external help or understanding.

"There are no resources out there on ways to navigate everything, from the medical system to the education system. There's no easy way to find that information that's related to your child and what your child needs. That's been really difficult," Melinda shares.

"We're five years into our journey now, so it's a little bit different. But in the beginning, I just felt alone and isolated, and I didn't know anybody whose child had this rare condition that even the doctors didn't know anything about."

As for what schools can do to accommodate children with chronic pain, Melinda acknowledged that there's no one-size-fits-all solution. 

"Chronic pain is different for every single child," she said. "What might be a really big problem for Cooper might not be quite as big for the next person. But I think if we were going to start anywhere, it's that teachers and the staff in the school system need to understand that the child is experiencing real pain, even if we can't see it.

"With chronic pain, it's not something that is fixed easily. It's not something that we can just pop a Band-Aid on and they'll be better in a few days. It can be lifelong for some of these kids, and that means that we need to adapt as we go. It needs to change, and as they get older, it needs to change. We need to make allowances for each of these kids."

Dr Pate, meanwhile, emphasised that the language we use in classrooms can make all the difference.

"In a recent school-based study led by my PhD student Bec Fechner, a school principal commented how learning about the latest neuroscience made kids without pain more empathetic in the playground," he shared. "Listening, validating, and exploring broader influences, all seemed important to them."

Following his PhD, Dr Pate developed a series of children's books, Zoe and Zak's Pain Hacks, to help make children's pain more digestible for young people.

"A common piece of feedback I receive is that Zoe Zoppins is relatable and the adventures provide a common language for kids to speak up about what's going on. That is empowering."

Feature Image: Instagram/@chronicpainaustralia/@fyshlur_au