Meg-and-AlexWith three days’ notice in 1989 a son, Ben Gower, came to them by way of adoption and they found themselves very suddenly becoming a mum and a dad.

With all the excitement of new parenthood, and not quite sure what to expect, it was a joy getting to know their son and it was easy to overlook his missing his first milestone or two.

Red flags started being raised when this continued – Ben wasn’t walking or talking way past when it would be expected and Jo and her husband were at a bit of a loss.

Their gorgeous little boy needed some help. After a long while of tests, a paediatric specialist in Launceston diagnosed Ben through DNA but it wasn’t until they discovered the Fragile X clinic in Melbourne that they learnt what was to come. It explained everything. The Fragile X group of disorders, are a family of inherited conditions caused by alterations in a gene that is located on the X-chromosome, hence the name Fragile X.

These disorders include a wide range of physical, intellectual and behavioural symptoms. In Ben, this manifested as difficulty learning, concentrating and being understood by his peers. This coincided with his highly enthusiastic attitude.

Elderly female patient holds her doctor’s hand for reassurance

Jo recalls walking with Ben through the park and coming across council workers with machinery and, not just being able to walk past, but having to go with Ben to take a look at the machines and have a chat with the workers. Instilling the virtues of kindness, understanding and confidence in Ben, his difficulties achieving milestones made it all the more difficult for Jo and Gary, who ultimately decided to send Ben to a special school. When he reached Newstead College, however, Ben began to shine as he began to work out what he loved doing and what he was good at.

Not being defined in any way by his condition, Ben’s personality is one of a outgoing, confident and deeply kind, conscientious and thoughtful man.

This allowed him to pick up work doing odd jobs with Gunns and the City of Launceston, in which he took great pride.

Not content with just taking on his paid work, Ben has a myriad of extra-curricular interests which includes volunteering with meals-on-wheels and working at the Mowbray Golf Club – where he certainly has well-developed, highly accurate swing.

The things many people take for granted can be so much harder for Ben, which speaks so well about Ben’s resilient character and positive disposition.

As a person who is always willing to give something a try and with several passions and interests – like yard work and bike riding – a person like Ben, with his incredible attitude and outlook on life, has the world at his feet. It is just a matter of finding the point at which what he loves doing intersects with a job opportunity. This has become a reality.

Ben has a permanent job at Coles which he loves and is adored by the customers and staff. He is always willing to lend a hand and is not afraid of asking if you need help with something. That is just who he is.

woman-on-black-folding-wheelchairThroughout COVID-19, Jo says how proud she is that Ben became an essential worker during a global pandemic, who thrived so well and contributed so much. The things many people take for granted can be so much harder for Ben, which speaks so well about Ben’s resilient character and positive disposition. On the day of writing, Ben had an appointment at the optometrist and, with errands like dental check ups, needs a lot of hand-holding. However, if you give Ben a job that tests his memory skills and organisational skills, I would challenge you to find anyone better at the task.

More recently, Jo, Ben and their supporters, and others living with Fragile X disorders lit up the Launceston Town Hall orange to raise awareness for the condition.

Raising awareness for special needs and disorders is not new for Jo either.

In the early days of the National Disability Insurance Scheme roll-out, Jo was asked to join the panel that would help set the direction of the scheme.

Jo and Ben are now applying these skills to raise awareness for the Fragile X family of disorders and, had it not been for the advent of the Coronavirus pandemic, would be conducting a series of fundraising events too.

When thinking about the future, Jo and Ben are optimistic. The NDIS has been a game-changer and opened up a great deal of opportunities for Ben and possibilities for his mum Jo to connect with, and support other parents in similar circumstances.

This is not to say that getting to this point hasn’t been without its challenges.

What is important, however, is living in the moment and appreciating the thoughtful, kind, funny and conscientious person Ben has ultimately become.