You will have to endure this as after the inaugural Parents & Friends meeting last night for Oscar’s support service (Lifestart, School Age Services, Northern Region) I felt compelled to write this down.
Our son, Oscar, has a rare genetic disorder. His dodgy chromosome 4 as we’ve taken to calling it has impacted him in terms of his intellectual ability, his speech (he has a profound speech disability) as well as mild cerebral palsy. Despite all this, Oscar is divine. He is happy, has a wicked sense of humour, the most remarkable empathy for others and brings joy to the lives of all who know him.
But the early years of his life were really tough – will he grow? Will he walk? Will he talk? What sort of schooling will he access? What sort of life will he be able to lead? How much therapy can we afford? And when we can’t how long is the wait to access community services that are available?
The early years as a parent are always a rollercoaster of emotion, with your stomach giving way, sheer exhilaration and sheer terror as you fling around the next blind corner. Having since had a ‘normal’ child and now expecting a very big surprise number three in October, the early years and adjustment to a life as a parent of a child with special needs is a hundredfold that of normalcy. A friend calls it living grief and she is quite right.
But in the midst of the fog that marred those first few years (and still settles over our lives with jarring regularity), we came into contact with an organisation called Lifestart.
Lifestart provides a community based program managed by families who know what it is to have the rug so quickly pulled from under you, you question if you will ever catch your breath or find your footing again, for families. Lifestart is a parent co-operative providing a family-centred approach to the needs of children with disabilities and their families. It is based on the concept of partnerships between parents and professionals. (as opposed to the conventional and widespread reality of therapists telling you what you should be doing and – probably unintentionally – giving you THE most oppressive guilt complexes for not doing whatever it is they recommend, even if that would mean losing your life (and your child’s) to one massive therapy session.
These people probably saved my life (I was suffering quite severe depression when they came into our world) and our family from one based on stress and grief to one of empowerment, strength and optimism.
And now Oscar is 7. He has been in a special “Start Right” program for two years, aimed at helping kids like him get into the school system to then transition to the mainstream. And that is what we will be doing, with the advocacy and support of Lifestart. As the organisation developed so too did the original children who prompted its creation – parents realised, they needed help at school too. So Lifestart School Age Services came into being.
So Oscar will be in Year 2 next year, with his peers, having the opportunities and experiences afforded to other children his age, irrespective of their abilities. He will be able to learn from his classmates and his classmates from him. There will be a generation of children who grow into adults knowing Oscar and therefore knowing that just because you can’t talk or you don’t quite learn in the same way, you have value and purpose in life. And most importantly, that you are not to be feared, taunted or spurned purely because you’re different.
Lifestart will be working with his teacher, the classroom aide and the school community as a whole to help make it happen and be successful.
This is about people making a difference every single day in small and quiet ways.
But we have a problem. The service in our area has not secured funding from the relevant government agency yet. So the 31 families in our district who will be using the service – and dependent on it in ensuring positive education outcomes and experiences for their children and the community in which they will be, are facing the prospect of raising almost $100,000 to make sure that can happen.
So yes, I guess this – as everything seems to – comes down to money.
But I don’t have high-flying friends. I don’t have big corporate clients I can turn to.
All I have is my voice and the experience I have had. So I guess its my turn to shout from the rooftops.
As we all face a future of uncertainty due to terrorism, reforms focused on the bottom line not on lives, and an every changing world, it needs to be heard amidst all that clanging, that life goes on, that there are people doing good deeds every day that are worth shining a light on and supporting.
That’s all really.