We've just gone through our yearly parent-teacher meeting, and it was a rough process. I'm still trying to unpack the whys and the hows and the wherefores. Indulge me while I do it here, and maybe we can find something together.
Our take on our child is... he's lovely, he's smart, he loves learning, he does not have any real challenging behaviours, he loves new experiences and he needs preparation for them, he understands and talks well yet struggles to do both those things in a socially pressured, fast, loud environment. Oh, and he's autistic.
A bureaucratic take on him would go like this... diagnosis: autistic disorder - high functioning, language scores above 70 and in normal range, IQ scores in normal range with over 30 point difference between verbal and performance IQ, fine and gross motor delay, attention deficit issues.
Our wonderful school is the absolute opposite of a judgmental bureaucracy, but still... you getting the idea...?
We made the decision to 'mainstream' him in the most liberal, forgiving, creative environment we could find. In many ways, his schooling journey has been a miraculous one. Our little boy who would turn and run when he saw a child his age, is now calling other kids friends. He goes to (and looks forward to) birthday parties. He is developing a real understanding of the subtleties of social behaviour in a way no therapeutically supervised social skills group could have.
However, mangling the words of whoever Don McLean was quoting... the world was never meant for one as beautiful as Billy.
School, as awesome as it is (and it is awesome) is exhausting for Billy. It sucks out his energy, while replenishing his mind. The friends he craves (did I ever think I would write that?) require such mental effort to decode that he's often found weeping while playing with them. The sounds they make, more often than not in pure unadulterated joyful play, cut like knives through his brain.
So WTF-ing hell do we do?
It has not been a natural easy path to find, but we've agreed on a few things this week.
- Billy will do short days (in Australia, afternoons at school are often full of the kind of free form chaotic experiences that beautifully concretise learning for NT kids, but unwind a lot of the gain for autistic ones like Billy).
- Billy will start early and have some one-to-one time before school with his teacher.
- Billy will have an aide, as many hours as we can fund.
- Billy's teachers (and said aide) will do some ASD training and agree to use some sensory and ASD learning aids
- Billy's Mum (that's me, hi!) will reinforce whatever's going on at school in one-to-one sessions at home.
- Home and School will communicate in written form, and meet monthly.
I'm aware we are lucky to have a school that will agree to these accommodations. I'm also aware they are not rocket science.
It's so easy to forget the fact that while I am all wrapped up in writing claws and thera-putty, other people haven't even heard of them. Sometimes the depth of information sharing/educating required is overwhelming, and I struggle to find a place to start.
I'm thinking, because we are in election mode in Australia right now, that we need to look at these things in a slightly different way. I was listening to our Prime Minister (bizarrely) 'announcing' that if we return her government, they will give children under six with disabilities up to $12000 in EI services. Awesome, except that her government does that right now... not sure how that might be different just because it's happening after the election... but, that's not my point.
She said that Early Intervention was to 'prepare children with disabilities for school'. And I thought, that's great, but what about preparing school for the children with disabilities?
Why don't we have a scheme, funded by government (wow, that would be cool) or by the private sector (technology/media/gaming... the places many kids with disabilities like autism may end up actually sharing their skills... just throwing it out there) for in-service programs for teachers and other education professionals, where they are expected to skill themselves up in special needs. Maybe employers could go too. Maybe there could be cool programs for NT kids to go find out more too...
The education system (and world of employment) is going to be, whether we like it or now, increasingly populated with differently abled humans. There will never be the resources (nor the desire, hopefully) for fully segregated 'special' schools for all people with special needs. Ability is a spectrum, needs are variable and life is a rich tapestry... so, what are our plans as a society to 'move forward' (to borrow a phrase from the election campaign) together.
I'm thinking... How about the community adapts and educates itself instead of expecting the SN kids to carry the burden of educating everyone else? Maybe we could accept that disability happens, and get pro-active? How about we expect that of each other?
In the process of showcasing the innovations that parents have discovered to facilitate the mainstreaming of their SN kids, someone mentioned something really important. She reminded us that we should not enter into discussions about our kids with a deficit frame of mind. They are not less than other kids. They are kids. People. With every right to an education experience.
I love that advice. And I tried it out yesterday. And it worked. We made positive changes on a small (Billy sized) scale, that benefits him and his peers.
Now I need to take my writing claw to the election campaign...