Help autistic to stay afloat

Support needed ... Living with autism is a daily challenge.
Support needed ... Living with autism is a daily challenge. 

Without specialist school staff, these children will go under, writes one Sydney mother.

My family's autism journey began nine years ago, when Luke was a blond, blue-eyed toddler. He seemed a bit too quiet and he fussed if people went near him at playgroup. Crowds and supermarkets were way too noisy. The words seemed slow in coming.

Whether you are facing a lifetime of severe autism or a situation that will respond to intervention is hard to gauge at first. But it breaks your heart.

Once the alarm bells have been rung and a child diagnosed, parents of children with disabilities are often expected to immerse their children in intensive, tailored, expensive early-intervention therapies.

My life was and remains a full-time merry-go-round of speech therapy, occupational therapy, exercises and psychological assessments. But the benefits have been profound.

Before 2008, there was little funding or recognition of the importance of early intervention. I have seen a great deal of positive change in funding for early therapy for autism. Yet, at the age of five, families shift from this high-care culture to having to throw their kids in the deep end of the mainstream pool - their local school. Sometimes they are made to sink or swim in the mainstream without floaties. Very often, parents are told their square little peg must be made to fit into what seems a very small triangular hole. They are made to feel lucky to get anything and so must adapt. Many disability parents grumble about the Department of Education.

However, all of us are afraid of seeming too demanding or inflexible about the system. Even now I am scared to speak up. Likewise, teaching staff, aides and bureaucrats have to think about careers. It's not healthy but everyone finds it necessary to toe the departmental line.

We were offered a place in an autism support class (within the campus of Warrawee's mainstream public school). This meant travel, an uncluttered room, toilet timing, help with food, a focus on social development, a small group with an extremely skilled teacher and an aide, great communication with parents, a fenced-off, highly supervised play area, music therapy, special sport and access to other families with similar challenges, plus proximity to ''ordinary'' students. The class meant more time on the early-intervention ''life-raft''. Supervised transition to mainstream also meant we could dog-paddle for short periods while our ''swimming'' skills improved. Aides are lifesavers who step in if needed. If you're not in trouble, they stand back.

It was caring, flexible, talented counsellors, senior staff and teacher aides who helped brilliant, busy teachers in a large mainstream school settle Luke in and get him to accept the bigger, busier situation.

The principal and support-class teacher spoke regularly. Professionals gave talks, the counsellor organised a friendship room, there were supervised games on the netball court. Other parents came on board.

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If I died tomorrow, I would trust these caring people with my family's future. But they deserve a system that promotes, rather than undermines, their work.

Teacher aides have been vital in the process of bringing Luke and Bob, my youngest, who also has autism, into school.

Without them, the playground would have been torture for Luke. I think he would never have written a word. Last year, Luke's year 5 NAPLAN test results showed he had gone off the top of the charts for maths. I was amazed. Expressive English is not his thing. But he has overcome predictions. He is not right at the bottom of his year. The boy has quirks - he is awkward - but he is still learning, despite the odds.

It takes a lot for ''special'' families to fit into the mainstream. Of course, some parents want the aide to be velcroed to the side of their child 24/7. Many want to train and supply the aide themselves. Some expect the aide to be there throughout the day and in breaks. This isn't realistic.

With great teachers, mainstreaming works. And those teachers deserve the back-up of well-trained teacher aides.

The state government is trying to introduce reforms trialled in the Illawarra, which get rid of aides. I don't want to spend the last years of my life nagging governments to be reasonable.

I'm worried that the floaties and life-rafts that have helped our family and others get this far will be taken away. Aides will disappear; teachers will be trained online to deal with incredibly challenging behaviours; schools will be subject to inflexible funding rules rather than get money to help the the number of children with disabilities who enrol.

It's getting harder to stay afloat.

The author is a Sydney mother of two boys.

Public meetings to discuss proposed changes to disability funding and services in NSW public schools will be in the Parliament House Theatrette, Thursday, February 16, at 1pm and 7pm. For information, phone 0417 919 354 or email upstream2005@yahoo.com.au.