Donate here to CPEC to support Jack at the Melbourne Marathon

‘Quick cuddle, Bwooce’.

My son Jack, 3, is obsessed with Bruce Springsteen. He’s a little unconventional in the sense that he likes ‘Wrecking Ball’ better than ‘Born in the USA’ or ‘Born to Run’, and his absolute favourite track is ‘Rand’ (‘American Land’). If you ask Jack whether he likes Bruce Springsteen, he inevitably responds, ‘Quick cuddle, Bwooce’.

Jack has cerebral palsy, and needs a lot of assistance from those of us who love and care for him. But he doesn’t like to impose so he does always add that ‘quick’ qualifier:

‘Quick cuddle, pweeeese’

‘Quick bounce, pweeeese’

‘Quick storwy, pweeeese’

The ‘quick bounce’ refers to the trampoline, which is his favourite place in the world.

He loves all movement. Trips in the car, a rocking train carriage, rides at The Melbourne Show [‘more piwate ship pweeese’]. Jack can’t yet crawl or walk, and it’s seeing how much he craves motion that breaks our hearts. On Sunday, I took him to Bounce!, and to that establishment’s credit, they glanced in the opposite direction as we bent their ‘one on the mat’ rule for a joyous hour.

Bounce! may not have been so confident had they seen this:

He also has a charm with strangers. He is partially sighted as a result of the brain injury that knocked out a visual centre of the brain (condition known as Cortical Vision Impairment), and it’s possible not being able to see the people he meets makes him feel less intimidated. He’ll often ask a new arrival for a ‘quick cuddle’. The one that made us laugh the hardest occurred recently at the Channel 9 studio in Docklands. I was on Kids WB, promoting my book ‘Stuff Happens: Jack’ (not about our Jack) and co-host Shane Crawford moseyed into the Green Room to say hello. Jack, perhaps sensing that Crawf has strong arms and a charitable heart, spotted his mark:

‘’Quick cuddle, Crawf’.

For us, Jack’s ability to manage some speech has been a ray of sunshine in the sometimes bleak emotional landscape of a disability diagnosis. With cerebral palsy, so much with respect to functionality is a cruel lottery. In the majority of cases, an incident in utero or just after birth has caused healthy brain cells to die, and nobody can predict which cells they will be, or which parts of the body will be affected. It’s a horrible case of ‘wait and see’. Muscle movement is most likely to be affected, as the ‘white matter’ that controls movement is at the outer extremity of the brain, and usually dies off first in the event of oxygen loss. Grey matter, which in a broad sense is the intelligence centre of the brain, is located closer to the cortex, and can often remain intact, which is why it’s unsafe to make an assumption of intellectual disability when one observes physical disability. That said, cerebral palsy can cause a loss of IQ. The whole thing really is a horrible waiting game.

An organisation that has helped Jack enormously is the Cerebral Palsy Education Centre (“CPEC” ) in Glen Waverley. Jack attends ‘Group’ there on Tuesdays and Thursdays, where skilled therapists create songs, games, and incentive-based activities to encourage kids to perform that small conscious movement that can be built upon for the long distance journey towards best possible mobility. They use leg and arm wraps to reduce unwanted ‘associated movement’.

There are toys, sounds, stories and songs to motivate the kids towards taking the next step. Sometimes it is a step. Sometimes it’s a deliberate eye movement, or a head tilt or an unclenching of the hand. Always, CPEC attempts to integrate activity and therapy into life.

It’s an amazing place . I mentioned before the cruel lottery of a cerebral palsy diagnosis. At CPEC we are often humbled by the bad luck that has befallen other parents, or more particularly, other kids. It’s there we meet children who can’t swallow food, children who have trouble breathing. Kids who have regular fits. Kids with varying degrees of muscle movement and core strength. It’s CPEC where we have met kids who have drawn the cruellest lot of all – reduced life expectancy.

We meet non verbal kids, and there is nowhere better than CPEC for getting kids communicating through alternative means – sometimes an electronic communication device, more commonly with the little kids it’s a Pragmatic Organisation Dynamic Display (PODD) communication books. So if Jesse, who is less verbal than Jack, wants a quick cuddle from his Mum, he’ll wave his wrist [“something to say”], point to a sad face, [“something’s wrong”], Mum turns to the related page, Jesse points [“something hurts”], Mum turns to parts of body page, Jesse points [“head sore”], and he’s ready for his cuddle. It’s phenomenal to witness. Magical, in fact.

These kids are all beautiful. If you ever have a chance to visit CPEC, it will take your breath away.

CPEC has offered both Jack and us support and community. It’s offered us equipment and expertise. Jack has improved so much over these two years. He was so tiny when he started there.

Most people know that having a disability is an expensive business. Few would realise how expensive. $5000 chairs, $1000 standers; $1500 body splints; $10,000 communication devices. It goes on and on. For the last few years, CPEC has been the preferred charity for the Melbourne Marathon. On race day, Jack is going to participate in the ASICS 5km walk. Our goal is to raise $700.

If you would like to give a ‘Quick Cuddle Jack’, please donate to his ‘Every Day Hero’ page.

I’ve no doubt when he sees you next, he’ll have one for you.