Posted on March 16, 2015
Boodi’s NDIS funding was approved yesterday. We first registered with them the day after his diagnosis on January 20, and we were shocked to find that no one could give us a time frame for when the funding would come through, though his diagnosis automatically ensured eligibility, and everyone spoke of how critical early intervention is. We heard some very disheartening stories, and came to realise that the scheme was perhaps not going to be the shining panacea that we imagined. We took on an advocate; a lovely man with an autistic son and a soft Scottish accent, who came and sat at our kitchen table and gave advice. Al made repeated, firm phonecalls, but we resigned ourselves to a much longer wait than it has actually turned out to be, so we celebrate, in a strange little way (life throws you odd celebrations).
Now for the next step forward, with fingers crossed (edit: actually, it’s more like two steps forward, one step backwards, but that’s another story)
When Boodi was first diagnosed, I read until my eyes ached. All of my previous reading had been to assure myself of all of the tell-tale signs, and to put a name to what was going on. A lot of what I read after the ASD was confirmed terrified and depressed me. It did not fit with Boodi at all. The turning point in my reading and my view point came with this interview with writer David Mitchell, who has an autistic son. His experience of post diagnosis mirrored ours (to a point, and it is really important to remember that all ASD kids are totally different, and so is the way in which the disorders manifest). The writer and his wife had translated a Japanese book by a “severely” autistic, non-verbal Japanese teen. The book, titled The Reason I Jump, is a series of questions, which the boy answered with devastating eloquence, using a character board that he pointed to (not dis-similar to the way The Diving Bell and the Butterfly was composed). I ordered the book that evening.
My research changed tack. From then on I sought the viewpoint of autistic people, and the way that they experienced the world firsthand. I sought understanding, as well as the beauty, sweetness and humour that I already saw in my child, things which the literature often deemed autistic people not to possess. When I write things like “The Words“, I seek more than anything a world where Boodi will not be pigeon-holed and put aside by the simple word of his disorder.
I had my first negative expereience of this at play group a few weeks ago, discussing three year old kinder enrolments for next year, something that I was quite unprepared for, and a mum new to the group asked why our Maternal Child Health Nurse hadn’t picked up on Boodi’s developmental issues. As I drew breath to address the question, another woman interjected with a story about her older child, who she had taken to the MCH Nurse with concerns, only to realise that her daughter was “at the other end of the *spectrum*”, and was a gifted child, who was acting out because she was bored (*she wasn’t referring to the autism spectrum). I sat back, shocked into wordlessness. This woman had, minutes earlier declared herself to be a teachers aide and offered to help Boodi if he attended three year old kinder next year. With her quick assessment of my son as being the opposite of gifted, I saw how people can simply judge and dismiss. Boodi was reduced to a word.
I won’t have that.
I won’t spend my life -and his- proving that my bright, sweet, funny kid is not the opposite of gifted. I will probably spend a lot of time talking about the fact that autistic people have always been around, that there is no epidemic, that autistic kids do not have “no light” behind their eyes. I will tell you that science doesn’t have a lot of answers about the way the disorder works , but that recent research indicates that the autistic brain is a complex and kooky-in-a-good-way thing that does not ever simply equal a list of lackings and shortfalls.
I will not speak of people who are not on the spectrum as “normal”, in relation to Boodi, but rather as neurotypical, or allistic (Al likes this one a lot). I might mention Temple Grandin or reference Carrie Cariello and her recently published book. Carrie talks about her ASD son Jack seeing the days of the week as colours, an ability that has a name, Synesthesia. Temple Grandin, who was non verbal as a child in the 1950s but with parents who saw her innate potential, went on to become a brilliant scholar who designed a more humane passageway to slaughter for animals about to be butchered. She was only able to design this system by virtue of her beautiful, free-form autistic brain. She is a passionate advocate and matriarch of the autism community worldwide.
Within that autism community, there is a large movement against the search for a “cure”. There is a simple desire to be accepted and supported as part of the diversity of humanity, and to stop discriminating; to stop reducing people to words or diagnoses, or the way that they fit into the puzzle- or not.
I would not want my little boy to be anyone other than himself. I love the boy, and must love the autism, as the two are inherent in each other.
We will be bringing Boodi up to know that he is perfect, and not broken. Our child need never believe himself to be the opposite of gifted, and not “special” either.
He is just like any other two year old boy, in that he is full of potential, mischief and infectious joy.
If you are at all interested, you can check out my pinterest board of autism research here.
In an unrelated and yet quite apt segue, Leonard Cohen wrote a poem called Gift, which I have always liked:
Linking up with the lovely Jess for #IBOT