When you’re a parent to physically disabled kids you exist in this peculiar parallel universe. For a number of years after the diagnosis it feels like your experiences are totally different to the ones that every other parent is having.
It’s fair enough. You start carrying spanners and syringes everywhere. You become an expert in the
inner workings of the brain, at home with words like globus pallidus and neuroplasticity. People tell
you that your kids have ‘complex motor disorders’ and you nod, so as to make everyone think that
you know what on earth that means.
You become so immersed in the oddities of your situation that sometimes you miss what is staring
you in the face… the fact that actually your kids are progressing and, if you look hard enough, God
forbid, they are doing some things the same as other kids their age.
My favourite moment like this was when our twins got their Whizz Kidz wheelchairs. It was a
moment when it felt like maybe someday, that great distant hope ‘independence’ might actually be
Thomas and Alice were premature; not mucking about premature, properly premature. They
weighed 670 grams each and were given a 20% chance of surviving. They had heart attacks,
collapsed lungs, brain operations, heart operations, superbugs, the full nine yards, but they made it.
Those first nine months in hospital meant that our expectations for what they might one day achieve
were set very low. Even so, the diagnosis several years later of severe quadriplegic Cerebral Palsy
was hard to take and meant that our expectations were once again lowered.
They were six when their Whizz Kidz powered chairs arrived. What a day, particularly for Thomas.
A huge amount of preparation has gone into the process of getting us to this stage. Sarah, our Whizz Kidz therapist, had spent a lot of time getting to understand the particularities of the twins' condition, especially the fact that their movements varied so much. She had gone to huge lengths with us to develop a system for driving which gave the twins the best possible chance of success.
Once in the chair, Thomas took a while to grasp the concept but eventually he understood and I recall the look of grim determination as he wrestled to grasp the joystick to propel the machine in the right direction. His face lit up with the sensation of self-propulsion.
I remember him, through sheer force of will, applying every functioning neural synapse to the
simple, tiny task of controlling the joystick. Each time his hand slipped from the control it seemed to
take Herculean effort to put it back there, but the incentive of free will was proving too strong.
It was as if his entire life had been building up to that moment – every operation, every scar, every
second of endless, mind-numbing therapy. Everything he had learnt, all of the strategies he had
taught himself for dealing with his disadvantage, came together in a laser like focus to enable him to
undertake this simple task. It was like a shard of bright light bursting from the darkness that had
shadowed so much of his life to that point.
He careered off into the flower bed! I walked over to him and brought him back to the safety of the
driveway. No sooner had I done that than he was off again, careering back towards the borders and
into the flower bed. He was giggling so hard as a pink geranium bush disappeared beneath his front
And suddenly it dawned on me. I realised, with pride, that this was the first time in his life that he
had been able to openly disobey me. Disobedience – the stock in trade for every six year old boy –
had been buried by circumstance all these years. Now he finally had the opportunity to express it, to
express his desire to do precisely what he wanted, rather than what we wanted.
To see him behaving so despicably, to see him expressing himself for the first time in this way was a
truly magical moment. It was the first time that we saw what might be possible for Thomas, what
he might achieve and how much closer to independence he could come.
Two For Joy by James Melville-Ross is published by John Blake Publishing and is released on 2nd June 2016