Seventeen years ago today my husband and I went for a long, hot walk along Manly Beach, just for something to do as we waited for our daughter to make an appearance. I was 40+ weeks pregnant, she still hadn’t engaged, and it seemed like she would never ever come out.

We didn’t plan our walk well because Manly on Australia Day is complete bedlam. There was no parking anywhere so we had to park miles away, atop the headland, and walk down what seemed a million steps, up the beach and back. It was hot and crowded, and I can’t remember going back up the steps but I must have. Later, around 3am, my water broke and it was on… Oh boy, was it on.

I can’t believe it was so long ago. Our daughter turns 17 tomorrow and this will be her last year of school. And, I simply cannot wait! The horizon is so tantalisingly close and, when it’s over, the celebration will be E-P-I-C.

Sweetpea in art gallery

We’re already celebrating little milestones.

Yesterday she mused that Thursday will be her last first day of school and I almost cheered. I’m especially pleased that her year isn’t going back until Thursday because her first day back to school has often been on her birthday. It seems fitting that she escapes that in Year 12.

I’m writing a personal blog post today because this week I have a couple of posts coming out in The Conversation about disability, education support funding, and gate-keeping students with disability.

These are based on my empirical research but, like many academics, I have dual identities – an academic research identity and a personal identity.

Sometimes, my public and personal identities collide as they did last week when I spoke to The Age about gate-keeping in schools. As much as we might try and keep them separate, and as much as some academics try to project a singular identity (in a bid to appear “objective”), we are all real people with real life experiences.

And yes, I have personal experience in the disability/special needs domain.

I also have views as the mother of a child in the education system that I don’t necessarily share as an academic. If my feelings as a mother were paramount, I would probably have advocated that children with an ADHD diagnosis receive targeted funding, but as a researcher I know what the consequences of that would be.

I also know many parents with similar experiences and feel uneasy at times that I rarely speak as a parent. In fact, I subordinate the personal to the academic and demand far less than I would if I had only the one identity. I think that is because I worry that people will dismiss what I have to say as an academic but the reality is that having a foot in both camps helps you to see things that other (one-siders) cannot.

Embracing life in the “grey zone”

Our daughter spent the second week of her life in intensive care with meningitis (as did the mother and baby we shared a room with in the maternity ward).

We have no proof that this particular event had any neurological impact but it is the only explanation (other than our other suspect, family genetics) for particular idiosyncrasies that baffled us, particularly when our daughter was little.

Things like repetitive parallel play, inability to relate to age-peers, reciting the lines of movies verbatim after watching them twice, talking in memorised chunks rather than stringing together individual words, recoiling from touch, not feeling pain when excited; huge issues with food, loud noises, bright lights, perfumes; no wind down or off switch, and so on…

When she was 3, her speech pathologist recommended that we see a clinical psychologist who diagnosed her with Asperger’s Syndrome, but I couldn’t cope with that, ran home and pretended it was all in my head.

A year later, when she was four, we were told she was gifted and that she had ADHD Combined type with a co-morbid anxiety disorder. Specialists very emphatically recommended that we medicate her with Zoloft and Dexamphetamine. I rejected that too.

When she was seven, we were back at Asperger’s after a particularly tumultuous year during which I began to accept that we were probably never going to have any answer and that we should just get used to living in the “grey zone”.

Each of these diagnostic categories has had some explanatory power at different points in our daughter’s life but none ever fit perfectly. No one could ever really explain what was going on or why. Maybe this was why we found it easier to just reject medical diagnoses, learn and accept the way she did things, try and teach her what she needed to get on in the world the best we could, whilst embracing her unique potential.

It hasn’t been easy and this “no medication/no labels” route isn’t for everyone. It was just what made sense to us and I guess the proof will be in the pudding, won’t it?

Counting the days… 

Our daughter started school well advanced beyond her year group but quickly spiralled downhill. The school wanted more testing, after which the counsellor pronounced that she had borderline mild intellectual impairment, and wanted us to sign off on an application for teacher aide funding. We laughed, horrified, and moved her to an Independent girls school, where there was no such pressure or extra support but where she flourished.*

A year later, she tested in the above average range. Go figure. By this point I’d pretty much had it with the diagnosis/testing merry-go-round. None of it seemed accurate and none came with any real practical solutions, so my husband and I decided to abandon the lot and to instead work with the many strengths our daughter has.

We enlisted brilliant, powerful teachers for whom I’d walk over hot coals (@henriettaMi – our family is indebted to you), employed tutors, and mixed them with a lot of hard work, love, laughter, and a shitload of lectures to explain the world and why people think, act, speak, and behave in the way they do.

From that point on, our daughter didn’t have a ‘disability’ or even ‘special needs’.

She finds some things hard – especially language and concentration – but she has an incredible sense of humour and is really, really funny. She is gentle, kind, patient, polite, knows and likes who she is, and has learned to be more tactful. She is eminently sensible, a keen observer who steers clear of more worldly kids who might pick on her, and she works bloody hard to be this way.

Which is why I get pissed off when she gets done over by the cracks in the schooling system.

Because we rejected the disability tag and all the stuff that goes with it (funding applications, etc), we can’t and don’t ask for much. Besides, quality differentiated inclusive practice is all our daughter needs.

Frustratingly, without the disability tag, it can be very difficult to receive quality differentiated practice, even though the tag isn’t technically necessary. That’s what a needs-based, non-categorical support/identification system is all about.

Whilst we’ve had the pleasure of knowing some brilliant teachers and school leaders who have made a lasting and positive difference, it’s the little things that are making me count the days…

Like the night I stood in line at the parent/teacher night and overheard the history teacher wax lyrical to the mother of a girl in my daughter’s class, telling her that her daughter was wonderful, that she didn’t need to be at the PT night, to go and get a coffee because her daughter was SO smart, a “pleasure” to teach, and had achieved straight A’s. All this without having to consult the marks book in front of her.

I fronted up next but the teacher of one of my daughter’s favourite subjects didn’t even know who she was. She had to look up her name in her marks book to work out which class she was in and then proceeded to say “Oh yes, [name]… C, B, C… Yes, she could do better. She’s going to have to work a lot harder, Mrs [name]!” I would have thought the kids who could do better would be front of mind.

Or like every year for the last few years in her current school where there is a “no surprises” policy and parents are supposed to receive advance warning that their child is not tracking well academically, well before the end of term report.

I can’t even estimate how many harried phone calls/emails I have received a day or two before my daughter’s report is sent out. Phone calls and emails in which it is clear they don’t really know my daughter (she always receives excellent/very good in behaviour) and that they haven’t ever checked OneSchool.

One particularly memorable contact was the morning of report day in Year 10. My daughter’s science teacher sent me an email to tell me that she had failed. Thing was, she was standing behind me and upon reading the email she burst into tears and ran.

This poor child had NO IDEA that she wasn’t doing well in science. Both she and I were under the impression that she was tracking well and she was feeling really positive about the subject. She had even been considering a career in podiatry.

To give due credit, once her science teacher and I had a very robust conversation – after about 2 minutes of me receiving that email – he made a significant effort to read and enact the support notes about our daughter that are posted on OneSchool, her achievement improved, and she passed science the following term.

That’s all I ask.

That her teachers check her understanding, that they read the support notes, that they provide worked examples, that they give clear and explicit instructions, that they give her the extra time in exams that she is meant to receive, and that I am advised in a timely way if there are problems, so that I have a chance to do something about it. You shouldn’t need a disability tag or additional funding for that.

But, last term, at the end of her twelfth year of schooling, only one of her teachers remembered that she is entitled to extra time in her critical Year 11 block exams. Only one.

Another berated her for not knowing how to do something in a software program, despite the fact that she’d transferred into his class only that semester and the program was taught in the previous one. It seems my daughter, being quiet and compliant, is also quite forgettable.

Countless teachers have recommended that she read more to improve her comprehension but when they do, I know bloody well that they haven’t read the support notes on OneSchool because her issues with comprehension (and Theory of Mind) are all outlined there. This is a kid who has a book almost permanently attached to the end of her nose. Lack of reading ain’t the problem!

I don’t know what the point of red-flagging a kid in OneSchool and providing support notes is if no one is going to read it. As a researcher in education, I completely get the difficulties teachers face and I continue to fight hard to improve the system, but as a mum I watch my daughter get passed over and it makes me angry.

I don’t like that the careers advisor recommended that she not go for an OP and that she think about doing a Certificate III instead. I don’t like that meetings about her predicted OP take place without her parents present and where she is told a heap of complicated stuff she doesn’t understand, cannot remember, and which undermines her confidence.

I don’t like the fact that the Independent girls school she was booked into since she was 3 years old and with whom we were 100% honest to make sure they could cope, called us three months before she was due to commence Year 5 to ask “if she still has learning difficulties because we’re academically selective in Y5 now and even though you had a confirmed place, she will have to sit an entrance test. And, no, you can’t have your $3000 back.”

So, yes, we’re celebrating that this is our daughter’s final year of school. I’m tired of begging, chasing, asking, cajoling, reprimanding, emailing, reminding, explaining, defending. And, we’ve still got our son to go.

But, for some reason, his teachers don’t hesitate to call me about him…

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* Not all Independent schools are the same.

 

 

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