Mum writes play about battle for son's support

When playwright Tracy Harris’ young son Hartley was diagnosed with cerebral palsy, she felt she had been thrown into a world she knew nothing about.

After spending years fighting for support and services, she decided to channel her experiences into a play about the everyday battles faced by parents like her.

She has teamed up with actor-turned-director Richard Mylan, who has faced a similar fight for his son Jaco, who is autistic.

The result is her play MumFighter, which she said was "really important for me to get that story out of my system".

Hartley was born four weeks premature after Tracy was rushed into hospital with appendicitis.

From an early age, she and her husband started noticing developmental delays and that he had a preference for his left-hand side.

"We got a physio to come and see him and the physio said straight away that she thought it was cerebral palsy, external and suddenly we were thrown into a world that we knew nothing about," said Tracy, who is from Swansea.

Cerebral palsy is the name for a group of lifelong conditions that affect movement and co-ordination.

"When you read anything about cerebral palsy, you know no two cases are the same with kids, so you don't know what the future will hold, you don't know what the outcome will be for your child, because you can't compare it," she said.

One of Tracy’s earliest battles was getting Hartley physiotherapy.

He was offered an hour a month but she learnt children in other parts of Wales were able to access far more.

"I felt frustrated and a bit upset that that just didn't seem fair," she said.

These emotions are familiar to Richard, whose son Jaco is now 19.

The play's director Richard, who is also from Swansea, created theatre company Grand Ambition alongside actors Michelle McTernan and Christian Patterson and musician Steve Balsamo in 2021 in order to tell stories from his home city.

Tracy's play is at Swansea Grand Theatre until Friday.

Richard and Tracy’s shared experience of coming to terms with a diagnosis and the ongoing battle to get the best care had led to some deep conversations during rehearsals.

"It’s so difficult for parents in those early years because we have a natural preconception of what parenthood is and it's imprinted on us and when that's taken away you’re almost dragged kicking and screaming and you have to kind of navigate this new world without a map or a compass, basically," he said.

He said one of the most difficult challenges he faced was the reaction of strangers to Jaco.

"My constant worry as a parent is other people’s misconceptions and preconceptions and ignorance," he said.

"I have to deal with it on a daily [basis] and thankfully Jaco is not unaware because he's always focused on joy."

He said many people did not know how to react to stimming.

Stimming or self-stimulating behaviour includes arm or hand-flapping, finger-flicking, rocking, jumping, spinning or twirling, head-banging and complex body movements, according to the National Autistic Society.

"I always want Jaco to stim in public because he stims when he's joyful, he stims when he's anxious," said Richard.

"It’s a way of communicating, a way of expressing how he's feeling but then other people don't understand that behaviour."

How does he deal with this?

"For the most part, you develop a very, very thick skin because if you were fighting every battle in that way, you'd either end up exhausted or in jail," he laughed.

"What I am quick to do is educate when I can in very kind of firm, effective way, ‘this is Jaco's behaviour, he does that because of this, this and this’, educate one person at a time."

"Someone said to me early on 'pick your battles' and I've stuck with that one," said Tracy.

She said working on her play with a team with shared lived experience of these issues had been a breath of fresh air.

"I'm so glad Rich is directing it because you don't have to say anything and he knows and that's so nice as a writer," she said.

Actress Cara Readle, who has cerebral palsy, has also been working with Richard throughout rehearsals.

"True representation is integral to telling a story and what Cara was able to bring is that true insight," said Richard.

He said he hoped anyone in the audience who had personal experience of parenting a child with additional needs would "feel seen".

Both Richard and Tracy said the experience of having a child who you needed to fight for was at times exhausting but also incredibly social.

"The connection that I have with Hartley seems so deep because I feel like we've both been through this amazing sort of trauma in some way but then also this beautiful journey together and I've just learnt so much from him," said Tracy.

"I'm still learning from Jaco," said Richard,

"Those beautiful moments, they're just so precious."