Learning that something is “not quite right” with your child is never easy. It’s harder still when that something comes with a big, scary label like cerebral palsy or brain damage.
That was the reality confronting our family almost three years ago when our six month old son was diagnosed with increased muscle tone (stiffness) in both legs, possibly indicating some form of cerebral palsy.
What came next was a bewildering journey through a maze of government departments, disability support services and early childhood intervention programs.
The parallel emotional journey was one of disbelief, anger, grief, anxiety, acceptance and finally joy as we re-learnt to love our imperfect child.
Every tiny quirk that had previously charmed and delighted us as new parents – the things that had once marked him as (good) special suddenly marked him as bad “special”.
As his mum, all I really wanted to know was would he be OK. Would he grow up to experience a full and normal-enough life? Would anyone (except us) ever love him? Would he be capable of love? Or would whatever was wrong with his brain rob him of the ability to love and be loved as well.
These were questions no-one could answer for us. Our paediatrician said he’d seen kids with symptoms like Lucas’ that had turned out just fine – and others that hadn’t. Unless, or until, Lucas started having brain seizures he wouldn’t recommend any additional testing. The advice was simply to get him into an early childhood intervention program – and just wait and see.
Eventually, this brought us to the Melbourne City Mission and their wonderfully caring, compassionate team of physiotherapists, occupational therapists, speech pathologists and early childhood educators.
Every Tuesday morning, for about six months we attended play-based physiotherapy sessions – Baby Boot Camp I liked to call it – along with 4 or 5 other infants and toddlers and their families.
In the end, things turned out great. About six months into Baby Boot Camp, Lucas got booted out for good behaviour (AKA he started walking) and he’s yet to exhibit any developmental delays.
These days, Lucas is your average three-year old, running, jumping, screaming and pushing the boundaries with the best of them. Occasionally, someone will notice that he walks a little funny, or remark on his lack of coordination or clumsiness. Yep, I’ll say proudly, he’s just like his mum.
In February this year I successfully applied for a $1200 Telstra’s Kids Fund grant for the Hartnett House Children’s Centre, the childcare centre attached to the Melbourne City Mission – where Lucas still attends.
For me the grant was a small way to say a huge Thank You to the organisation, and the amazing people within it, for helping us through what I hope will be one of the more difficult times in our lives.
Has a local community organisation made in difference in your life? How did you say thanks?
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