THE FIGHTING FOR OUR AUTISTIC CHILDREN NEVER ENDS

I’m at it again.

I have turned into THAT mother, again.

The one where when teachers see me coming, they groan, roll their eyes and wish to goodness the world would open up and swallow them whole.  Or me, maybe they want the world to swallow me whole.

Either way, I am THAT mother.

Last year, Master J had an amazing, awesome care team at his school.

I fought so freaking hard to get it in place.

Dear lord, I fought so hard.

When we enrolled him into high school, they took great pains to tell us that they were a non-selective private school, that they believed in good education being available to all which was reflected in their greatly reduced fees, that they had an individual needs department that catered for those children that didn’t fit the “norm” (and oh how I hate that word), that our son would be happy there and more than that, he would thrive.

They lied.

Very shortly after he started this school, it became excruciatingly apparent they had absolutely no fucking idea what they were doing.

And so the fighting began.

Because the fighting for our autistic children never ends.  Ever.

I became that parent that would visit, email and phone, demanding to know what they were doing about his lack of understanding, his lack of learning, his lack of socialising, his lack of inclusion.

I have friends who are teachers and they would tell me that I was their worst nightmare.

I got it.  I still do.

But here’s the thing:

Too many of our autistic children, many many of whom are intelligent beyond what we imagine them to be, are being lost because they fall into the educational  “too hard” basket.

1 in 8 children are diagnosed with Autism.  That represents 12,5% of our children, or 461,762 school aged children.  Just let that sink in for a bit.  Nearly half a million school aged children in Australia (give or take a few) fall somewhere on the Autistic Spectrum.

Yet, very little training is offered to teachers of these children.

Our education system in the westernised world is extremely cookie cutter in its approach.  A set of standards, devised around the 1950s, delivered in a very standardised way, tested in an equally standardised way, have to be achieved in order for a child to be considered educated.  It’s crap really, but my own personal feelings aside, the system exists and we have to traverse through it, somehow.

But it is through this traversing through a standardised system where it all comes crumbling down.  Our educators don’t know how to deal with the anomaly that is autism, despite its increasing incidence.  Society still insists that our teachers deliver the standardised gumph, despite the human landscape of what is considered to be normal rapidly evolving.  Like the proverbial dinosaur stuck in time, the education system is struggling to adjust.

Nevertheless, it isn’t my duty to own their lack of training, it is my duty to own how my high functioning autistic son isn’t going to fall through the cracks of his educational institution.

And so I am THAT mother.

And it is so hard being that mother.  Because the system is slow, and old, and degenerate.  And the employers of this system treat you with all the contempt they feel.  You are a thorn in their side.  You are asking things of them they can’t possibly deliver because it simply isn’t in the manual, see.  And so you must make your child conform, and if they don’t conform, then there is no room at this inn, see.

And so our children become statistics.  You know the ones.  The ones that say that 80% of autistic children who do not finish school have very “poor outcomes”.  Make of that what you will.  I believe it means that very few of them become independent, very few of them lead fulfilling lives determined on their own terms.  Instead, they remain dependent and disempowered, being told how to be and how to perform by others.

All because they are educationally “too hard”.

But I cannot give up.  I just cannot.  I have to give it my all.  Even when my all is not enough.

And so I am that mother.

And the school and I were not friends.

But then, after years of fighting, organising, strategising and pushing,  a glorious light emerged on the horizon.

That light was a new Individual Needs Coordinator (INC) whom I shall call Jane.

Jane was among that new wave of educators who take their job extremely seriously.  She saw the potential in these children as undiscovered beacons of light and she saw it as her duty to dig away all the muck and dirt and social conditioning to allow that child to shine.  She also saw it as her duty to educate the teachers about her new charges, to ensure they had the best possible tools to help her in her quest to bring these children new hope and a much brighter future than was ever predicted.

Within a year of her being there, an Autistic Spectrum consultancy had been brought in to educate the staff, new programs had been set up to support these children and my son started to, indeed, thrive.  She arranged for him to attend an intensive 10 week program for autistic children in the mountains specifically aimed at building on their strengths and allowing them to see themselves as the gifts they truly are.

Master J returned a new child.  Not the one who left as diminshed, suicidal and hopeless, but one who returned as empowered, hopeful and happy.

The school rallied around him, a care team was put in place, termly meetings were held and a whole person approach was applied to ensure everyone involved in his care both at home and at school were all on the same page.  He felt supported, and as his mother who had fought so hard for him, so did I.

It is not an understatement to say that I loved Jane.

Apparently, the school did not.

At the end of last year, I received a phone call from Jane.  By this time, she had become my friend, more than Master J’s INC.  She called to tell me that she was leaving, that she unfortunately had become the victim of extreme bullying from management due to her holding the school to account in its responsibility to the 30-odd individual needs kids at the school.  There was no time for a handover, she said, the school had refused to let her tell anyone of her intention to leave.

I was devastated.

I burst into tears.  In the middle of the food court.  The tears just came.

She cried too.

Two years of fighting together and the dinosaur was back.

But the fighting for our autistic children never ends.

And so I met with the new INC.  I took an instant dislike to her.  She was a conformist, a trophy for the school to hold up to say “See, we support your individual needs kid here.”  She had no passion, no gumption.  No charge for our children would be led by her.

Cognisant of my own judgement, I felt it only fair to give her some time to settle in, give her time to find her feet, to find her voice, to speak for our children.

She never did.

I sent emails, I liaised, called meetings.  I never heard from her.  8 months and not a peep.  Why become an INC, I would ask, if not to fight for our children?

I’ve been dealt the same contempt that I am so used to now.

And Master J has started to slip.

He has tried so hard to hold on.  But there is only so much a child with autism can do on their own.  Only so much they can put up with before their sensory overload and anxiety goes into overdrive.

Year 11 is a tough year.  With only 14 months to go until he finishes school, the workload is piling up and he is falling further into the quagmire.

It has been heart breaking to watch.

And so this week, and with increasing exasperation, I went into battle again.

I just came out and said it:

“I am THAT mother,” I said, “the one who refuses to allow her son to become just another statistic, another child you just want to push through your system, whether or not they benefit from it, or become better people for it, or feel disempowered because of it. I am THAT mother.  Because my son is not a statistic, because he thrived last year and because you have let him down this year.  I am THAT mother.  Because fighting for our autistic children never ends.  Ever. So hoist up your sails, school, because I am not going away until I am satisfied that my son feels supported, and that his final 14 months of school are as fulfilling to him as I imagined they would be this time last year.  I am THAT mother, I am THAT mother.”

Until next time,

Sarah's Heart Writes Signature

 

 

 

 

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8 thoughts on “THE FIGHTING FOR OUR AUTISTIC CHILDREN NEVER ENDS

  1. Things are really no better in NZ. I look at it from being within a schoolthat has many special needs children but not the money nor staff nor training to fully support these children. We try and try to get help/funding from the education ministry but are knocked back time and time again. Every sch tries here but growing numbers need intensive help. It is appalling and schs do say they have failed many. Govt not listening as only about 5% getting help sadly. If you are average you are okay. Behind/abive/asd etc etc not getting what they need

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    • I wholeheartedly agree Kimberley. Many moms tell me that they wish there was a dedicated school for our children, with staff that focus on their strengths and understand their challenges. Currently, we have specialist schools for children who score low on the IQ school, but nothing that caters for autistic children with normal/high IQs but with some quite significant challenges. Instead, they are forced through a system that doesn’t cater to them at all, and too many – far too many – are being lost. Thank you very much for your comment xx

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  2. Sarah, this has me in tears. I am so scared for my little boy, but oh, I am so glad that there are mums like you out there being THAT mum, that I can learn from, and make sure that Boodi gets the education that he deserves. We need so many more Jane’s in the world. All power and love to you x

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    • Thank you Dani. It is hard, to continue the fight, but somehow we have to do it. The educational system is woefully inadequate and ill equipped to deal with our children, but we can make a difference, I have to believe that. xx

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  3. Having been schooled in the private school community in Melbourne, I can easily imagine the dinosaurs you are fighting against on a daily basis. But you are that mother, and you’ll see him through to the end. Go you! And Master J, too!

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