The first time I started reading about Autism Spectrum Disorder was when my daughter was 18 months old.
I was trying to find answers as to why my child would only eat white foods, why she never recognised when she was hungry or thirsty, why she did not seem to notice pain when excited, why she did not like to be hugged (even by her mum or dad), why she was terrified by loud noises but attracted to the washing machine, why she was “set off” for days if we had visitors (especially if those visitors wore perfume), why she spoke in oddly organised and memorised “chunks”, and why I was slowly turning into a prisoner in my own home.
When she was two, I made the decision to go back to university, partly because I sensed it would be good for both of us. She began daycare one day a week and I felt like I was missing a limb every time I left her.
It was a bloody struggle every single week. The sandpit gave her excema, she was sick every other day, and every drop-off and pick-up was greeted by a massive melt-down. After about 6 months, we moved her up to two days for continuity’s sake.
One interesting thing about my very pale daughter [who for this post will be known only as Sweetpea] is that she used to cry with such ferocity that she would burst the tiny capillaries in her skin. These blotches would only last a few hours, but you could measure the force of a melt-down by how far they spread.
Just on her face: 1-3 grade meltdown.
Spreading down her neck: 4-6 grade meltdown.
Across torso and arms: 7-10 meltdown.
I began noticing that she had 7-10 grade blotches when I picked her up, well before she’d had a chance to reproduce them on the way out the gate. Some careful probing revealed that the centre carers had been tying her to a chair to force her to sit at the “lunch” table, while the other children ate.
Why? Because that’s what she should do.
I took our daughter home and never went back. As soon as a place became available, I enrolled her at Mia-Mia Child and Family Study Centre at Macquarie University. She was almost three by this stage.
The transition was long and heart-breaking. I spent hours sitting outside the centre watching her from afar, tears streaming. She would speak to adults but never to children. In fact, she made sure that there was an adult between her and other children at all times. A little shadow who moved herself around this glorious centre like a lone chess piece.
Enter the first teacher who helped us shape our daughter’s future.
The lovely Jenny Eaton noticed that Sweetpea only ever engaged in parallel play and no spontaneous imaginative play, unless it was directed by an adult. Carefully, Jenny began setting up play sequences to involve Sweetpea and teamed her up with two other little girls.
I say ‘little’ girls, but they seemed so much older than my mite, with sophisticated language, inquiring eyes and a radar that told them she was somehow different. I’d like to say it all went well but triangles seldom do.
Nonetheless, Sweetpea’s fear of other children did wane a little and she joined in activities more, thanks to Jenny who would intervene when or before it all went pear-shaped. Wherever you are now, Jenny, thank you! xxx
At five, Sweetpea started school in Queensland and seemed to be coping well with everything but the weather. You see, it can be kind of dangerous to not recognise thirst in the thumping heat of February and when schools are not air-conditioned.
My request that her teacher please make sure that she drink some water before attacking the monkey-bars* resulted in the first “she’ll need to be ascertained” (this is Queensland-speak for “we need funding to do anything different”).
Despite getting called to the school whenever she passed out from dehydration, we didn’t bother with ascertainment until she was almost eight. This was because (a) I knew that she was unlikely to receive much, and (b) I refused to go through the rigmarole for something that freakin’ simple.
I’m reliving all this today (and more) because there’s a lot of hand-wringing at the moment about funding for students with disability with the claim that inclusive education doesn’t work because it isn’t funded properly.
There may be some truth to this, but I know from my research over the last 13 years that the existing funding isn’t always used well. And it is also true that many students with disability can be successfully included without ANY additional (individually targeted) funding.
In truth, there is a lot that disturbs me about the current debate. The hyperbole in pieces like this article from the Daily Telegraph makes my skin crawl, but so too does the framing of the problem.
In a nutshell, the claim in this article is that there is a critical shortage of places in support classes and special schools in NSW with many more students than places available.
In the past, this has been cast as the fault of inclusion (or integration as they STILL call it in NSW) but this is completely false and my research with colleagues at Macquarie University illustrated this over six years ago.
We found that the proportion of enrolments in segregated settings in the NSW government school sector has been increasing since the 1990s. We also found a proportional decline in enrolments in regular classes.
In other words, the “mainstream” is shrinking…
A quick check this afternoon was enough to confirm that the trend to exclude is still strong in Australia’s largest school system.
In 2007, 2.28% of students (16, 846) attending NSW government schools were enrolled in support classes and special schools. By 2015, that proportion had increased by almost one third to 2.90% (22,408 students).
What that means is a growing proportion of students with disability are being educated in special schools and classes. Those speaking to the Daily Telegraph would have us increase this further.
As always, the language is revealing. For example, as one principal stated:
“While students with disabilities should be welcomed in the mainstream setting, there are some cases where a specialist setting would be far more appropriate. Parental choice should not be the final determining factor, as a mainstream setting cannot offer.”
I have two questions in response to this.
- If the proportion of students in segregated settings has been increasing for (at least) the last 25 years and the mainstream itself is shrinking, shouldn’t these principals be asking what might be wrong with the mainstream and what it would take for local schools to be able to do things differently??
- Given that principals are responsible for leading their schools, investing in their teachers, and supporting their students in accordance with the DDA and Disability Standards, then isn’t Point 1 what they should be lobbying for?
Sweetpea made it through school, and has come so far that I find it hard to believe when I look at her now that she’s the same person as the little chess piece I used to watch. Frankly, I see a “before” Sweetpea and an “after” Sweetpea, but I couldn’t tell you when before ended or after began.
It wasn’t easy and there is much that could and should change in regards to schooling, but that can only happen if everyone in this space thinks beyond the status quo.
What I do know is that Sweetpea wouldn’t be where she is today if we’d wrapped her in cotton wool or if she’d been shunted into a special class. She has worked hard, used her many strengths to compensate and sought help from supportive friends, and I’m bloody glad she had that opportunity.
Because she’s now in her first year of uni and guess what?
She is NAILING it.
Unlike many of her peers, she goes to every lecture and every tutorial. She studies her heart out to keep up and she is getting distinctions. At uni. Something we were once told would never be possible.
And, whilst Sweetpea can’t figure out her timetable for love nor money, that’s the only support from disability services that we’ve ever asked for.
She asks for a lot of clarification from her lecturers and tutors, but not once has anyone at her uni ever told us that we need to get funding for her before they will do things differently.
And, from my vantage point, that’s a big part of the problem in schools.
* Note that the P/1 class had 10 mins to eat before being released by the teacher.
** Thank you Griffith University and QCA. You rock.