Emmilou’s School: A constant battle for support.

Ever heard of the expression “don’t poke the bear”? 

[Image Description]: Emmilou writing in an activity book with a blue marker.

Well, no truer words were spoken about parents when it comes to their children. Advocating for your child with unique abilities is a never-ending job, and most of the time it is because other people innocently, or naively, just don’t understand the complexities of what you and your little one are going through. 

More often than it should be happening, the very systems of support designed to help, challenge you and push your capacity to advocate for your child to the limits. We all know how it feels to have to go up against the big beasts: the hospitals and healthcare sector; the government and their “systems”, like Centrelink or the NDIS; community therapists, supports and medical specialists; and the whole darn educational system to name a few of the main offenders. It pisses me off, because all these offenders claim to have you and your child’s best interests at heart and time and time again, they lay their cards on the table, and you see it was another farce.

Take the “education system”:

And oh boy, do I have a bee in my bonnet with the education system right now (but we’ll get to that in a moment):

I talk to parents and carers all the time that can’t seem to get the education system to work for their child. Parents are constantly made to justify their children’s fundamental needs, validate their essential supports, fight for their basic human rights, speak to their differences, and ASK for equality and inclusion. Read that again…we must ask for equality and inclusion. It’s the 21st century! How is this still something we must ask for!? It makes us mad.

For these reasons, choosing childcare or a school is not easy for your child. It certainly wasn’t for us. Even after having meticulous conversations, the supporting documentation you source and provide, and the leg-work you do in finding an institution that fits your child’s needs…your advocacy is still not done. Changes to staff (e.g., executives, teachers, aids), getting support (like equipment, modifications, or an educational aid), or just finding some stability and consistency in care is HARD work! And what’s worse, is no matter what arrangements you come to, the school will always try to poke and nudge at them. And if they get even the slightest hint of flexibility, they’ll twist and bend that support into something that no longer serves you and your child. 

So what’s got me fired up recently?

Emmilou is in a mainstream school (which, for the sake of their dignity, I won’t repeat); it works for our family and is the best option and choice for her. However, for her to remain in an educational setting she requires additional support and modifications in her schooling; primarily to keep her safe, and to support her with aspects of her independence. 

Like everything in Emmilou’s life, even accessing school is not straightforward; she only goes half days because her little body fatigues so fast, and a full day is just too much to handle. Fortunately, modifications to time spent at school can be made for children with challenges and medical needs. Lucky me… But she needed more than a half day in ‘support’.

So I did battle, I crawled through the trenches, and I got Emmilou real support in school. She was given her own full-time EA (and an exceptional one at that) funded by the Department of Education. And this EA’s sole purpose was to be there for Emmilou. This wasn’t luck, this was a win.

Unfortunately, I couldn’t rest on my laurels for very long. Recently, Emmilou had major surgery and took an extended period off school. Naturally, the school relocated her EA to another classroom and reallocated her funding to other children. Those ‘children’ most likely absolutely deserve the additional support, and I agree that the school should be providing it, but not at my daughter’s expense.

And that is exactly what happened when Emmilou returned to school. Oftentimes, Emmilou’s EA was tied up with other duties and unable to attend to her. It shouldn’t come as a surprise that there were a few too many near misses.

And some hits…

Too often this happens, schools nudge and juggle funding (quietly, of course) and spread it as thin as they can get away with. Of course, all this came with no written evidence. No paper trail.

(Have you noticed principals’ reluctance to put things in writing? I have.)

The lack of e-communication, and the passive aggressive conversations we had in person ‘off hand’ never cease to amaze me. Getting them to spell out what’s actually happening and what they will do about it in an email is a difficult feat, but a necessary one. This gives you a record and a means to hold them accountable when and if they go back on their word.

Holding them accountable is exactly what I did. Knowing where to start is often the hardest hurdle in the hamster wheel of advocacy. If this is something you’re dealing with, or worried about, I’ve included an example advocacy letter I drafted in Emmilou’s case: HERE. My hope is it will give you the inspiration to take on the beast… whatever system that might be. And if the fight is too much; remember you can reach out to us at RippleAbility. We can, and do, help.

But always remember…you are the bear. Don’t be afraid to show them what happens when they poke…PUSH BACK!

Much love,