2006 has been an interesting year so far:
– Oscar changed schools and moved into a mainstream class.
– We were still adjusting to being a family of five with Jasper’s arrival in October.
– I returned to full-time work in February.
– And Chef opened his own restaurant (Flying Fox Cafe, 2 Mona St, Mona Vale – for those who didn’t know…) last week.
Then the support service we use was denied funding. The service that probably saved our marriage. The people that undoubtedly revolutionised our parenting, interactions and reactions to not only Oscar, but Felix as well. That gave us the skills and the strategies to rebuild our family unit from one under severe stress and in crisis to one where we laughed again, could relax and most importantly, had hope and forward momentum. The service that empowered us away from the isolated fringe of the community back into being a part of it. The service that made our dream for Oscar to be a part of our local community a reality. The people who were going to work with us, with Oscar, with his school this year to ensure being in a mainstream setting was one of success. Was all taken away. In one A4 letter.
Just like that.
For the first time ever, in my life as a parent, I felt powerless and hopeless. And well, no one is allowed to do that to me. When you are the parent of a child with special needs, it is one thing to adjust and adapt to a life framed by a ‘living grief’. It is another thing to feel hopeless.
S, the head of the service who has been since its inception, never gave up – her resilience simply takes my breath away. “It will be all right Kim,” she said.
Then another parent, S2, sent out an email to the family email list that let a little oxygen onto my almost extinguished flame. And I thought, what’s a few emails?
We had a few wins. We had someone of the calibre of Australia’s most powerful radio man recognise this was a good cause worth fighting for. We had common-sense on our side. There was strong grass-roots support through our local suburban papers. Our local members of Parliament stepped up to the plate.
But you know, how many parents had done this before us? How many had fought the good fight for years? There was almost a leaky tap approach – just a steady, constant, relentless drip drip drip of information, of us, by us, baring our collective soul to anyone who would listen.
Then this week my home was broken into. (All they took was my shiny new laptop I had organised through salary-sacrifice at work and owned for f.o.u.r. days and our baby bag backpack. Please note they did not take Chef’s x-box or myriad games. Yes, I hear you, where is the justice?). Then I had a locksmith tell me I had “put his afternoon out” by having two additional locks needing replacing that I hadn’t realised when I booked the call.
The untold psychological damage and years of therapy I bestowed on my children in the exchange that followed between he and I is not really worth dwelling on at this point in time.
It was like all of the anxiety, fuelled since having to start a momentous year like 2006 without our support network, all came to a head. And just as I was feeling that I could take no more, S2 rang on her way from Parliament House. Evening news. Announcement by the Premier. TV cameras.
So, with what has felt like a dozen “final straw”s since we found out the news in January, I have been surprised by my reaction to all the developments this week and the ULTIMATE news today.
Today – the head of the govt dept involved rang S. Money has been found. The entire amount we required to keep the service operating will immediately be made available to us. The paperwork will be signed at a meeting happening this coming week. A meeting we had been requesting for over four years. The cherry on top? That a tender will be developed for the provision of this wondrous support service and therapy services for the entire Sydney region.
Am I amazed? Yes. I said to S2 at the start, “If all I do is make a bureaucrat squirm for a day over a decision made on incorrect information and assumptions, that is victory enough.” (Although I knew in my heart that wasn’t quite true.)
Am I proud? Not really, we just do what we do for our children.
Am I elated? Not yet, for I know this battle to ensure the same rights are afforded our children as are automatically bestowed on any other will never be a victory in the bag, but a constant quest for what is right.
Am I grateful? More than those who have helped get this to the front page, onto the agenda, into the spotlight, and forced a hand will ever ever know. Not that any of them know about this site (GOD FORBID they ever know about my albino period) but to all of them – the producers, the journos, the staffers, the pollies and in particular to that one radio man who has been as terrier-like as us parents – from the bottom of my heart, thank you for listening. Thank you for not relegating us to “just another rabid parent/constituent” junk pile.
Thank you for acknowledging us, for portraying us and our children with dignity and respect and for helping us fight a good and just fight.
What it has done, is restore a quiet fortitude in my soul to always fight the good fight and to never give up.
And that, like the world this service enables for the families in its care, is immeasurable.