Like many seven-year-old boys, Anthony Phillips is full of life, with a big imagination; he loves Star Wars, busting out the moves to his favourite songs and would live off chips and juice if he could.
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He loves movies and musicals, has a great sense of humour and is very social, but doesn’t shy away from fighting with his siblings and throwing a tantrum if things don’t go his way.
However, unlike most kids his age, Anthony spends much of his time outside school in a constant round of speech therapy, occupational therapy and physiotherapy, not to mention the regular check-ups with doctors and specialists.
He suffers from sleep apnea, dyspraxia – a disorder affecting fine and/or gross motor coordination, phobias and anxiety, digestive and respiratory problems, dysfunctional sensory profile, has moderate to severe hearing loss, and has to get annual blood tests to check his thyroid.
Anthony was born with four holes in his heart – not uncommon for babies born with Down syndrome.
It wasn’t until a week after Anthony was born that his parents, Byron and Kerry, found out he has Down syndrome.
“It was a big change for our family,” dad Byron said.
“We knew nothing about Down syndrome at the time.
“He was born with four holes in his heart and had problems with digestion and breathing. But as he got bigger and went to the cardiologist, he was able to close his own heart.”
Anthony’s diagnosis was life-changing for the family.
Not only did Byron and Kerry, who ran a children’s playground at the time, switch careers to the disability sector, but their eldest daughter Harmony, 11, was diagnosed with autism through attending therapies with her baby brother.
Later, their youngest son Tom, 4, was also diagnosed with autism.
Wednesday was World Down Syndrome Day (WDSD) and the Phillips family are using the day as an opportunity to advocate for inclusion and acceptance, particularly within the Moree community.
This year WDSD is celebrating #WhatIBringToMyCommunity to recognise what people with Down syndrome can and do bring to their communities when given the opportunity.
“World Down syndrome Day is a way of getting to know these people,” Byron said.
“We encourage our family and friends to wear bright socks [as part of the ‘Lots of Socks’ campaign]; it’s a little salute to people with Down syndrome.
“Since [Anthony was diagnosed with Down syndrome] our big thing is to break down barriers and be really inclusive.
“It gave us a reason to advocate for people with disabilities.”
Each year the Phillips family have a little party to celebrate WDSD, which coincidentally also falls on Harmony Day – all about inclusiveness, respect and belonging for all Australians.
“The kids have a great day, we’ve made it a bit of a tradition,” Byron said.
“Anthony gets to choose the dinner – he loves chips and juice, and cake.”
Living in Moree with Down syndrome
The Phillips family moved to Moree from Sydney just over a year ago to be closer to family.
They also felt that living in the country would be more beneficial to each of their children.
“The good thing for us is the space; being away from the city and getting back to nature. We now have lots of animals which the kids love,” Byron said.
As far as the Phillips know, Anthony – who is in year two at Moree Public School – is the only child under 10 in the school system in Moree who has Down syndrome.
While living in a small regional community has it’s pros and cons, for the most part, Anthony has been welcomed in Moree.
“Moree is very friendly. People say g’day, which is great for Anthony,” Byron said.
“The more they see him, the more they’ll get to know him.
“We’ve found Anthony’s a very social boy. He loves saying hello and going to Coles and Woolies and giving everyone hugs. We call them love hugs.
“The staff we come across are all very good with him.
“For him it’s about being included in the community and breaking down those barriers. We want people to come and say g’day.”
Byron and Kerry say one of the biggest misconceptions they come across in the community is that people are unsure of how to treat Anthony.
“It’s just the fear of the unknown, not knowing how to relate because he is non-verbal,” Kerry said.
“Not knowing you can treat him like a normal seven-year-old boy.
“You get a range of responses - lots of empathy, people saying ‘he’s so cute’ and ‘he’s always happy’. But he’s just like everyone else, he’s got a range of emotions.
“He lives in the moment with his emotion … he does have meltdowns and he does lash out at people.
“It’s a scary concept but that’s why we’re huge on inclusion and integration and independence. They’re his goals at school this year.”
Lack of medical services a concern
Byron and Kerry believe Moree is very lucky to have some wonderful disability services in town, including Challenge and Northcott which Anthony regularly utilises.
However, Byron said there’s a big gap medically.
“We have to travel a long way for specialists,” he said.
Anthony requires fortnightly treatment with speech, physio and occupational therapists to develop his speech and fine and gross motor skills.
However, there’s no speech therapist in Moree. Instead, a lady from Inverell visits each fortnight.
The Phillips family also need to see a pediatrician every six months for each of their children, but the nearest one is located in Tamworth.
Even just getting in to see a GP is difficult, and for someone with respiratory issues like Anthony, having a common cold is a big issue.
“If there’s any health issues, it’s back to Randwick in Sydney,” Byron said.
“Many people with disabilities in Moree would have to travel or fly to Sydney at some point and that’s so expensive.
“I think that’s why some people leave town.”
The Phillips’ would like to see more medical specialists come to Moree.
“The town’s got such great potential but to be more inclusive, it ties into medical assistance linked to disabilities,” Byron said.
What it’s like having a child with Down syndrome
Like all families, the Phillips have good days and bad days, but having a child with Down syndrome brings its own set of challenges.
“It isn’t easy, it has many, many challenges, especially with behaviours and speech,” Byron said.
“It took a long time for him to learn to walk; his brother was born the same week he decided to get up and run around.
“There’s a two to three year delay in gross motor skills. We have to be prepared to put the hard yards in and go to therapy.”
Kerry said the need for constant one-on-one support is also challenging and has meant that Byron is unable to work full-time, as someone needs to be with Anthony at all times.
“There has to be two of us home if we want to get anything done,” she said.
“Also not knowing what he needs because he can’t tell us.”
With Anthony also suffering from sleep apnea, the Phillips struggle with a lack of sleep.
“We haven’t had a proper sleep for at least seven years,” Kerry said.
Another challenge has been finding a network of friends who understands their situation.
Despite all this, there are many rewarding moments, particularly each time Anthony achieves a milestone.
“When he learnt to walk for the first time, that was really special,” Kerry said.
“This month he learnt to use a cup. Before that he was drinking out of a straw.
“We’re really involved in every little step of his development. It doesn’t happen organically like with other kids.”
Kerry said her and Byron have also developed so much empathy for others, as well as bucketloads of patience.
What should Moree know about Anthony?
“Anthony is very accepting of everyone, he’s not judgemental of anyone,” Kerry said.
“If he comes up and hugs you in the middle of the street, he’s just saying hi.
“He might be loud and noisy, but he lives every moment with so much passion.
“If you do see him running away, hold him up for us.
“Also, Moree, we really need a cinema - he loves the big screen and popcorn.”
