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needs: Relief and Specialist Teachers

There are so many reasons why she melts down in my car after school. Sure, some of them reside in the heavy house of resilience and some meltdowns shack up in the world of normal primary school social glitches. The ones that shit me are the meltdowns caused by an adult who could have known better. It’s a gut punch for me and I feel hostility rise as the ten minutes of re-telling through tears stumble from her lips to my ears. From the driver’s seat mirror, I see she is a mess and he is frustrated. He is angry for her and there are days where he is just angry because he is sick of after school car drama.

She is battling snot, an inconsiderate seat belt and the school bag that never fits where she wants to put it and she never puts it where it does. It’s a lot to navigate when your little heart is frayed. I am navigating 30 odd family cars out of a shoe box car park and waving hello with an “it’s alright smile”. Some of the other cars are playing out their own meltdown scenarios right now, waving “it’s alright to me in return”. The picture is forming and I am taking deep breaths. It’s not her fault so don’t be mad at her. It’s not his fault, so don’t be mad at him. As she wanders to the point, I am angry. It’s clear. It’s an adult’s fault and could have been avoided.

The PE teacher, always the PE teacher, shouted. She was playing Tee Ball, and the ball came, but she didn’t see the ball, it was just there and then it wasn’t. The PE teacher shouted at the rude girl not paying attention. Everyone was shouted. Then she woke up to find everyone shouting. She cried and was told to go and wash her face.

The art teacher, always the art teacher, shouted. She wasn’t listening to the instructions. She was looking out the window. The teacher shouted at the rude girl not paying attention. She lost time and when she came back everyone laughed. She cried and was told to go and wash her face.

The emergency teacher, always the emergency teacher snapped more as the day wore on. She didn’t pay attention, wasn’t listening, was the last to be ready… She recalls their words, their tone, their pitch in the retelling. Those words mark her. By the end of a paper cuts day, she cried and was told to go and wash her face.

A small aside, washing your face is not a medical, educational or behavioural balm that cures neuro diversity. So, she sits in our car messing up her ever so clean face with a retelling that leaves her blotchy but relieved. I know she is seeking me out in the rear-view mirror. Checking and hedging the balance between her debrief and my rippling anger.

It shouldn’t happen. We have reports. The school has the reports. They should have read the reports about her diagnosis. Sometimes I spray some colourful vivid images across the car windshield almost scarring them with my rage. Not my best moments. Sometimes, I breathe out how pissed I am, pause and look to them both, and know I need to lean in, and listen with all my love and get some kind of car dance party underway. The tug of war between both responses is heavy.

It is always the teacher that doesn’t have her all the time. It’s always the teacher that doesn’t have the time….it is always the teacher that isn’t given the time to have the means to meet her needs.

means: Helping teachers to know about your kids

Teachers are fucking awesome. Teachers are teaching. Teachers are busy. Teachers look after a lot of kids. The best thing for a kid, a teacher and a parent is to find ways to help Teachers.

The class teacher cannot be the only person who knows about your kid’s needs. The class teacher doesn’t take them for art or music or language or incursions or excursions.

The class teacher may not always be there.

Medical/Allied Health reports and assessments are cumbersome and may be read by anyone other than the class teacher.

Relief teacher days and specialist teacher activities can be a break from school work. If those teachers have the needs covered, your kid can enjoy the activities.

A one-page student profile can be read at a glance and brings the child’s needs out front for the day.

Draft and decorate the profile with your kid. This begins their ownership of their needs, and being able to advocate for themselves.

Provide it to the school with instructions about its purpose. This is not a complaint. This is a solution.

Give it to the regular specialist teachers.

Have a laminated copy in your kid’s bag. Skill them up to pass it on to teachers.

Diarise to update the profile if medication, diagnosis, or anything changes.

needs: Referrals.

My beloved says “we take advice and do our best”. I always feel like that is unsettling. I whirl and twirl finding the right person for the right thing, and then jump through imaginary hurdles to get the appointment. “We take advice” feels like we only do what we are told. “We do our best” is the beginning of wanting to do a little bit more, a little bit better… It’s an unsettling, edgy feeling that probably comes from failing her. You can imagine how that plays out on a book week costume…. I’d love to declare it stops there, I won’t seek the impossible, I will do a good job, done well, rather than a relentless pursuit of perfection. But that will last for a week and I’ll be miserable. I know that its my crazy. I also know that being aware of it, helps me find some balance between the unrelenting force to do more than “our best” and nurture the peace that comes from “that will do just fine”.

The thing is, seeing someone new with my girl is tricky. I take some convincing. I need to know whether they know what is going on in a pragmatic cover all bases way or if they are running off a feeling, while hanging dream catchers. I need to know if they are going to work against the rest of her team or if they play nice with others. I’m a 10-point plan Mum rather than a wait and see fairy. A referral, simply put, is direction towards more advice. Sometimes that professional advice crystallises my hunch and gives me a plan. Other times advice drowns out common sense and frazzles the life balance. All referrals lead her to a new room, with a new person, talking about a problem with her.

She was having a good run neurologically but the aches and pains required more Panadol and Nurofen than I liked. Our awesome GP prepared a referral with her eyes on the screen. I filled the gaps in the one size fits all referral document and had eyes on my girl. I confirmed the diagnosis, treating specialists, medication and previous plans. My girl took it all in. Later, I signed for Medicare and rebooked while she gushed in whispers. She didn’t understand, and she didn’t want to see another person, and she was hungry. We rushed to pick up her brother late, had a call from my beloved asking me to text photos to Grandma and the referral drifted deep into my handbag.

The GP (Appointment 1) referred my girl to Rheumatology at the Children’s Hospital (Appointment 2). Rheumatology referred her to the Paediatric physio (Appointment 3) who was just lovely except for the bit about referring us on. We followed the “next right thing” guide and went to see the Podiatrist (Appointment 4). He was methodical and considered and I was at ease. We talked all about a “ground up approach” and proprioception. 3 months later (Appointments 5-8) she got orthotics. During this time, we continued with the Paediatric physio (Appointments 9-12) and physio equipment bounced around our home. Then one day the Paediatric physio suggested a breathing physio. I made a phone call and after hearing more about the fee structure and the need to see my girl during school hours, I took a beat.

I considered having to tell the background again, having to miss school, the expense, the car time, the impact on her brother and that the person I was speaking with didn’t leave me thinking this was actually going to help.

3 years on and her team fluctuates but I keep it locked down like a night club. One in One out. Appointments are restricted to reduce missed school. I ask about fees and rebates so we are prepared for the bottom line. Occasionally I dip into something for a term, and retire it when we need to. Our new GP knows the back ground and prepares the referrals with my girl so she knows who she has to see and why. Funnily enough, we found a brilliant Breathing Physio, and she has been life changing. I think my beloved is right, “we take advice”. I will even admit “we do our best”, but my best is about balancing an acceptable level of inquiry and therapy with an awesome level of craft, bushwalking, kitchen dancing and sleepovers. Kid first, patient second.

means: Referrals my way in 9 steps.

Background: I help my GP make sure this rings true. I keep it short but razor accurate. This is not a time to be quiet. Previous diagnosis, height and weight.
Current complaint: This sets the tone for the first appointment and I get frustrated if the appointment is hijacked by a referral that went in the wrong direction. You want your GP to describe what is wrong simply. Help your GP by being clear.
Medication: I include the name of any medication and current doses. Our prescriptions come from different specialists and a referral is a good time for the GP to review. Record in your phone.
Proofed by my girl: Having her deficiencies summarised in black and white is the dark side of referrals. These words don’t hurt my girl as much if she has final approval.
Copy: Ask for one. An old referral is the best place to start a new referral. A lost referral can delay an appointment and if I have a copy, I can send it again.
Gatekeepers: are the people who run the office, appointments and accounts at your GP and at the specialist you are trying to get into. They are your new best friend. Straight after the GP puts the referral in my hand, I ask the GP’s Gatekeeper to fax/email it. If it’s sent, you can chase it up.
Call: I call the new gatekeeper the next day. The referral is fresh and I get to know the person who schedules appointments and manages invoices. Sometimes we really need school holiday appointments and sometimes we really need to bulk bill. The gatekeeper sorts these things.
Diary: I diarise when the referral was sent, when to follow up and when the referral expires. Without a valid referral, there is no Medicare claim.
Have fun: with my girl. She is more than the details on a page.