Stand-downs and meltdowns: The struggles of school for my autistic child

Tuesday, 27 July 2021

Learning is tough for a number of children with autism.

OPINION: Raising a child with autism is one of the most amazing experiences.

You get to see the world through a completely different lens, your point of view is challenged and you grow as much as they do.

However, it is also full of difficulties, especially when you start to enter the world of main stream education.

In fact, until we entered that world we really had been quite sheltered in terms of what living with autism meant.

We hadn’t even sought a diagnosis, just recognised that our child did things a little differently, but nothing which really caused us any great worry or alarm.

* The precarious lives of teacher aides: 'I don't know if I'll have a job next year'

* Parents paying teacher aides under the table 'common', despite being illegal**

That all changed when he was 6 years old.

At first, school went well. He seemed to thrive and was eager to learn. He had a beautiful teacher who was gentle and kind, and the demands were manageable for him.

As he advanced into Year 2, it all seemed to go south. He began to have meltdowns due to sensory and demand overload, and this was made worse by a complete lack of communication and understanding from the school.

We knew he was having a few issues adjusting, but these had been presented to us as pretty minor and nothing to worry about. That was until I got the first of many distressing phone calls from the school.

I was told there had been an incident and I needed to attend the school immediately.

I arrived to find a relatively calm child, and to be told that they were considering suspension.

My world crumbled. My beautiful 6-year-old boy suspended?

I didn’t even know this was something that happened at primary school. It would happen many times to come.

We managed to avoid the first suspension. We sought a diagnosis when we were finally aware of the issues, and we continued to try work with the school.

I thought this is it, we know the issue now; we will get the help.

The school attempted to access support, but it was slow to come. The little they did get just wasn’t enough.

We were made to feel like bad parents and like our child was a burden. At its best, we got 45 minutes a day teacher aide time.

The Ministry of Education came in with psychologists, but the school was resistant to take on any of its recommendations.

We made recommendations, requests, and offered to fund them, but the school wouldn’t take it.

This is what is sold to us as adequate support.

We brought in outside help, but they only highlighted how far the school needed to come to be inclusive, and it seemed like they weren’t interested in trying.

Phone calls become almost daily. His behaviour spiralled.

I had to resign from a job I loved, and family life became strained.

Eventually, I got to my last straw. We had one more stand down left before exclusion and he was sent home yet again.

He was devastated; I was devastated.

We removed him from school the next day, and home schooled him for the rest of the year. It was hard, but slowly my boy returned, and the negative impact the school environment had on him became so obvious.

We complained to the board of trustees, which was a traumatic experience. Again, we felt blamed as parents and our own mental health was questioned by other parents, who failed to see the situation for what it was.

We went to the Ministry of Education to further the complaint, but still, the results were unsatisfactory. There were limited options to take the complaint much further.

While many parents end up turning to home school, it wasn’t right for him or us. I whole-heartedly believed he should be able to access the same education as his peers.

He craved social interaction, he wanted friends. So hesitantly, we approached another school.

I would love to say school life is perfect, but it's not.

He still doesn’t have enough support, his teacher is amazing, but still doesn’t have specialist training in neurodiverse learning. But it is better.

We have gone from having to fight a school and a system to get our son what he needs, to just having to fight a system. This time, with a school at our side.

Now, when the phone rings, I don’t go straight to panic, as it’s not always a come get your child call. It’s always a call for advice first, and often, that results in a successful day at school.

I am continuing with my complaint. I take every opportunity I have to challenge the current system because I know that as hard as our experience has been, other parents have it tougher. Other kids are struggling more and it’s not right.

Schools seem far from adequate and far from ideal, so much more could be done if parents were just listened to and if our kids were heard.