Jack’s story – “The label doesn’t describe how amazing he is”

Jack was born with what Dearne calls a “non-optional extras package”. Jack was born with bilateral talipes, also known as clubfoot, and metopic craniosynostosis, a condition where part of a baby’s skull fuses together before birth.

“I have often said that Jack came to me to teach me a thing or two and oh boy, he has and continues to teach me lots.” 

Roller coaster ride

Dearne says that the rollercoaster ride of navigating doctors, specialists and geneticists began “pretty much the moment he was born” for both her and Jack and that, at the time, she was completely unaware of what was coming her way.

“In some ways, as a mother, I kind of knew something wasn’t quite right. By the time Jack reached his first birthday, he had had six operations, and I had learnt a lot about appreciating the little things. 

“By the time Jack was two and a half he had endured more doctors appointments, specialist appointments and operations than you could poke a stick at.

“It wasn’t long before he was referred to a developmental team as he wasn’t reaching his developmental milestones. The report came back to say he was severely behind in every developmental area.”

Jack was diagnosed with global developmental delay, which was later changed to severe intellectual disability, a diagnosis that completely floored Dearne.

Plan for an unknown future

Dealing with the impact of Jack’s diagnosis, Dearne started to think about the future and what this would hold for her son.

“Until this point in time, I took it all as best I could and tried to stay strong and look for the good in everything. But this? I just didn’t know what to do, where to start, or what this meant for the future.

“You see I had always prided myself on being able to fix things, solve the problem, work things out, have a plan of action, and for the first time I felt completely useless and lost.

“So many questions and no answers, no matter who I asked, nobody could tell me what the future looked like. Little did I know I had very little to worry about and that he would turn out to be an amazing young man who would make me proud every day and bring me so much joy.”

Down the rabbit hole

It was with the help of Google, asking questions and the support of disability services that led Dearne to different early intervention programs.

“By the time Jack was two and a half, he was learning sign language, reading, writing and maths. When Jack started kindy, he was ahead of the pack with his ability academically, but that was short-lived.”

“Jack and I spent many, many hours with therapists adapting learning into daily activities. Speech, OT and physio became the new normal. We gave everything a try, including varying his diet and kinesiology.”

Although thankful for the support her son has received Dearne says that navigating the system has been a challenge.

“Often, we have to go down many rabbit holes to find answers which is exhausting and frustrating. It’s a maze of information and depending on who you talk to, you can get very different and conflicting information.

“In the beginning, it is so overwhelming. You really don’t know what to do, where to start or what the future is going to hold. You run all the various scenarios through your head. Will he get a job, get married, have his own place . . . But now that Jack is nineteen I get to look back and ask myself ‘what were you so worried about?’”

“He is a polite young man with an insatiable zest for life that rubs off onto everyone he meets,” Dearne continues.

“What more could I ever want for him? He is totally loved and is making his own mark in life.

“He now attends TAFE and, like other nineteen-year-olds, is looking for work.

Dearne and Jack continue to access support so that Jack can continue to do things, like develop new skills.

“Today we still work with speech therapists, physiotherapists, and occupational therapists but we also work with organisations such as Community Vision who offer programs for socialisation and skill development and provide access to qualified support workers to help Jack out in the community.” 

Not letting labels define who he is

Jack being defined by labels is something that Dearne doesn’t worry about anymore.

“I know that Jack is just Jack, and the label doesn’t describe how amazing he is, nor does it define him as a person.

“Jack has never been told that he wasn’t able and couldn’t do things. He was never told the label defined him.

“So as true to his form, he has continued to amaze us with his ability.

“He loves to write. He also enjoys learning Taekwondo, is an Australian National Champion and has represented Australia twice. He is known and supported well in the Taekwondo family.”

“He also loves to ride his bike and is very partial to singing his favourite song, although very out of tune. He has given learning to read music and play the drums a red hot crack and wasn’t too bad at it either.”

Reflecting on the journey

Everyone’s journey is different when it comes to disability, says Dearne, but the best advice is to be prepared to ask questions.

“If I were to give one bit of advice it would be to talk to other parents, especially those whose children are a couple of years older, as you can learn what worked for them and what they wished they had done differently.

“Accessing disability supports and finding your way around the system means you are going to have to ask lots of questions and keep pushing for answers that you are happy with. If you are not happy, keep pushing for the information and support you need,” she adds.

Dearne says the most important thing is to not be too hard on yourself and to “remember our kids are amazing.”

“I have also learnt that I need to look after myself and that I can only help and support Jack when I am the best version of myself. So, I make sure I look after myself by staying fit and healthy and looking after my mental health.”

“Don’t let pride get in the way of asking for help. We have more challenges than most, and we need the help so we can continue to be the best version of ourselves for everyone. The saying ‘it takes a village to raise a child’ is so very true.”