L’amour actually

Happiness incarnate (first day of school, 2014)

MY FIVE-year-old Amelia loves school the way that Pepé Le Pew had a case of deep, un-PC l’amour for Penelope Pussycat in the old Looney Tunes cartoons.

It’s a profound, single-minded passion, and like Pepé, Amelia will brook no barriers (in his case, not even a wrongly identified species) between herself and her love for a paramour called Primary School.

Even on mornings when she has spent an entire vomit-punctuated night on the tiles with her weary head draped over a bucket, Amelia will fight hard for her right to go to school.

As soon as I start to say that we might have to pull the pin on the day’s play, she fixes me with a look of desperation, somewhere between sorrow and defiance, and cries, “No Mum! I WANT TO GO TO SCHOOL!’

I have to sneak into the kitchen and quietly call the office to report her impending absence, all the while aware that my school-obsessed child is in her room struggling manfully into her uniform between bouts of wretching, coughing and sneezing.

I don’t know whether to laugh or cry, which just about sums up my experience of parenting such a wild, enigmatic girl.

Eventually Amelia accepts her lot and melds into the couch as she must, but not before many tears have been shed over her tragic separation from the place that gives her so much happiness, so much purpose. So much confidence.

On its own, it’s not such a terrible problem to have, is it? A child who will get ready for school in the blink of an eye and stand at attention by the door waiting for her bus ride, a full 15 minutes before it is due to arrive.

A child who will rush with you from a morning appointment, never tarrying, to make sure she makes it to school before the end of ‘brain gym’ or to the start of music, dance or Auslan; just a few of the classes that have so inspired her mind this year.

But there is one big drawback to all this school time ardour that has the potential to make life very tricky for me.

Equal to Amelia’s adoration of school is her infinite regard for routine. Clearly these loves go hand-in-hand with each other, as school is the central experience in her life that is founded on a strict timetable and the all important ‘knowing what comes next’.

There’s nothing that freaks my ASD child out more than not knowing what is coming next. In the next minute, next hour, week, or month.

We spend our lives trying to quell Amelia’s anxieties through repeated information about timeframes, plans and some form of schedule, but life beyond school is never as predictable as she would like.

Let me tell you, it is downright exhausting to live with someone who never stops asking, ‘and then what? And then what? AND THEN WHAT?!’

So, imagine you are the parent of this rigid, school-loving little person and you realise you have to INTERRUPT THE MONDAY ROUTINE HALF WAY THROUGH SCHOOL TO GO TO AN OCCUPATIONAL THERAPY APPOINTMENT EVERY TWO WEEKS.

Sorry to shout, but only caps would do to express my fear of interrupting Amelia’s weekly routine – of getting between her and her beloved school – and living to tell the tale.

Amelia has grown used to going to speech therapy sessions and other medical check-ups in the morning and then heading on to school. She doesn’t love it, but she’ll tolerate the anomaly. It has a sequential flow she can understand. Plus the end destination is school.

This new arrangement was going to involve me attending school on a Monday for our regular on-site speech session with the lovely CN, and then altering the usual pattern of things by taking Amelia to see her OT. By the end there’d be little time to go back to school so it would make sense to go straight home.

‘Maybe it’ll be ok…?’, I thought with fake optimism.

But a full week before the first appointment, Amelia turned to me out of the blue and declared, ‘No OT on Monday, Mum. I don’t like it. We do speech then I stay at school. Go home on the bus’.

She could not have been clearer about her feelings. I didn’t say too much in case I upset her even more, but I had a familiar sinking feeling about how day one of this change in routine was going to pan out.

On the morning of the new Monday world order, all was going well until speech wrapped up and I turned to Amelia and said, ‘OK, it’s time to go and see your OT now, Meels’. Yeah, right.

It was like she’d been fired out of a cannon, such was Amelia’s sudden and violent desire to escape me and the dreaded idea of leaving school that day. Sling-shot like, she flung her body out of the room and into the school foyer, screaming loud protestations as she went.

I chased after her and CN was hot on my heels. Amelia had sprinted through the foyer and was close to the hallway that led back to her beloved classroom. I did my best to stop her without being overly physical but she was already yelling the school down.

She was NOT going to go gently into that good car park with me, no matter how much I cajoled her or made rash promises of coinage, chocolate cake or park visits on the way home.

Last year, without the insight into the ASD behaviours that drive my child’s engine, I might have tried to drag her with me, force the issue, make her do what I wanted until we collapsed in a tear-soaked heap in one of the many public spaces across Melbourne to witness our mutual humiliation.

Now, I am much quicker to accept a situation like this on its immediate merits, and back off if backing off is required. I looked at Amelia’s stricken face, her sweaty brow, heard the panic in her screams and summed it all up in a matter of seconds.

Turning to CN, who was a supportive presence by my side (sometimes you want people to flee the scene of a meltdown and leave you, this was not one of those days), I shrugged and said, ‘It’s not going to happen today, is it?’ She could only agree.

The brilliant simplicity of a visual schedule

And though my plans had failed for the moment, CN chimed in straight away with an idea that was brilliant in its simplicity. She would create a tailor-made visual schedule (see picture) to use on the Mondays when Amelia was due to see her OT.

CN would create one for us to use at home with cards depicting images or photos of things like, ‘bus’, ‘school’, ‘speech session’, ‘OT appointment’, and so on. She would also keep an identical copy at school and spend time during the week talking it over with Amelia.

Amelia’s amazing teacher, PR, was also involved in the planning and offered to discuss the Monday routine with her in class and normalise it as far as possible.

My contribution was to offer to take Amelia back to school after the OT session, even if it was for just an hour, so that she could finish out the day and come home on the bus, restoring some kind of lost balance to her schedule.

It sounds pretty straightforward, but as soon as these strategies were put in place we saw an immediate improvement. With greater visual explanations of what was happening and some time to process the change, Amelia was far more open to leaving the school with me the next time around.

We finished speech, went along to see her OT for a cooperative and happy session and made it back to school for the last activity of the day. The drop off was a bit fraught, but Rome wasn’t built in a day and changes to Amelia’s routine were not going to be solved overnight.

The next fortnight ticked over and I arrived at Amelia’s class to collect her for speech. Her teacher pulled her in close and re-explained what would be happening next.

She suggested that this time when I brought her back to school, Amelia might like to walk back from the front office to class by herself, like a big girl. Like she does in the mornings with the class roll. Amelia nodded in silent but relaxed agreement.

Every two weeks, CN, PR and I were like a crack squad, making tiny but crucial refinements to ‘Plan: Get Amelia to the OT and Back’ and our efforts were paying off. I can’t thank them enough for their intuition, care and support.

When I at last took Amelia back to school, she skipped inside without stress or fear. I gave her a soft hug and said, ‘OK chicken, it’s time for you to go back to class now. All by yourself, like a big girl’.

She smiled at me and the expression stretched wide across her countenance like the brightest rainbow in the sky. It held all the colours of acceptance and shades of sincere thanks for delivering her back into the warm bosom of school.

Because Amelia loves that place like I love Marlon Brando and potato chips, or indeed like Marlon himself loved potato chips; truly, madly and without regret.