Love, Tears & Autism excerpt
It was June 2006. In the three months that we had to wait before we could see the paediatrician, I was watching Cameron carefully and writing down things I noticed.
One of his particular foibles was what we called his ‘stuck’ routine. It first appeared as we left his grandparents’ house one Thursday. Without much convenient parking, I usually left the car on the street about 50 metres from their front door. It was always tricky getting Cameron inside the house, and getting him back into the car was another whole drama again. He either fought to stay in the house, refusing to go out or ran as fast as he could to the car with me panicking behind.
On this particular day he was in a running mood. He darted around the corner and headed right for the car. I breathed a sigh of relief as I saw him approach the door, and then yelped as he sped right past. I put on a burst of speed myself as I yelled frantically for him to stop. He ran another 20 metres before coming to a halt right next to the driveway to his grandparents back gate. Frustrated and angry, I grabbed his hand and yanked him back to the car. He yelled and screamed with all his might and we had a mega-tantrum for the next half hour while I drove home.
The next week, it happened again, but this time I was prepared. I caught him just five metres past the car, but he was not coming back to the car for anything. He pulled and urged forward with all his strength yelling and shrieking, “Stuck, stuck, stuck.”
When his little hand finally slipped out of mine, he tore up to the same place next to the driveway that he had stopped at the previous week. “Stuck, stuck, stuck!” he tantrumed.
Once he had stood there for a couple of minutes, he calmed down and then was fine to come with me and get into the car.
When I finally understood autism, I realised that he was creating routines and habits that helped him maintain control. He needed to follow his own static rules in order to feel better about the world. For the next six months, every time we tried to leave his grandparents’ place, he had to go through the routine of running up to his ‘stuck’ spot and standing there for a few minutes until he felt ready to get into the car.
The ‘stuck’ routine had a few variations. Every time we came home he wouldn’t go inside the house unless he could stand next to the garage for a few minutes. Then he had to run to the end of the outside verandah, from where I had to coax (and usually carry) him through the front door, with him resisting all the way.
I developed a routine of my own in order to cope. I shooed Jasmine through the door first, then carried in Max in his baby capsule, unloaded whatever groceries or bags I had in the car, and then finally steeled myself for the inevitable fight to get Cameron in. The last step was always locking the front door behind me as I didn’t want to have to do it all over again if he made an escape.
There were other odd behaviours that were becoming more obvious too. By this time his speech had improved so that we could actually understand what he was saying. But all he was saying were stories, scripts and lines from TV programs. I remember being absolutely delighted but then completely flummoxed by the first real words that I ever heard from him. It was an almost complete rendition of the song ‘Dorothy the Dinosaur’ by the Wiggles.
His speech had certainly not improved enough for him to understand or answer questions. He was completely floored by any question, even something requiring only a yes or no answer. As for "What's your name?" or "How old are you?" or "What's your favourite toy?" – it was a waste of time to even ask it. He would just turn away or yell in protest.
Then of course, there was the picky eating. He would only eat pasta and cheese, vegemite sandwiches, yoghurt and apples. No meat, no vegetables and nothing with any colour in it. He refused food with strong smells, refused food that was on the wrong plate, refused food with the wrong number of items on the plate, and refused food, well, just because he did.
He was also picky about clothes. No jeans or jumpers, jackets or hats. No sweatshirts or t-shirts with designs on them. No button-up shirts or vests or ties. He refused to wear anything but track pants and long sleeved t-shirts in solid colours. He had his favourite shoes, and I hoped against hope that his feet wouldn’t grow too fast, or that the shoes wouldn’t wear out too quickly because I couldn’t see how I would ever get him into anything else.
Then there was his inability to toilet train and his refusals to get into the bath. Night-time routines for my daughter had always been a fairly straightforward ‘dinner, bath, teeth, story and bed’. Cameron fought his way through dinner, he refused, kicking and screaming, to have a bath and he clenched his jaw shut when I brought out the toothbrush. Thankfully he enjoyed the story part, but it often took him hours to get to sleep.
He was also addicted to music and TV. If I wanted to keep him calm, I would often put a children’s show on. It worked for as long as the show lasted. Once I went to turn it off, however, the screaming started. He also needed to watch all the beginning and end credits, and seemed far more interested in the logos and slogans than in the shows themselves.
A bigger addiction was Thomas the Tank Engine which occupied his whole world for about three or four months that year. (It came back at various stages over the next three to four years.) He talked about Thomas constantly once he started to get more words. His first words on getting up and last words on going to bed were 'Thomas is a tank engine. He has six small wheels' or 'Gordon is number 5. Thomas is number 1. Henry is number 4'. I became a great, if somewhat reluctant, expert on Thomas and his annoyingly jovial group of engine friends.
I didn’t realise at the time that Cameron hardly ever used his hands for pointing, gesturing, writing, holding, squishing, feeling or splashing. What I did notice was that he always had to hold two items in his hands. It might be two small books, two cards or two train engines. In his Thomas phase, he carried a yellow carriage and a blue carriage around in his hands all day every day for months. It was a monumental disaster one day when one went missing. He cried and cried for hours and we ended up buying a whole new set just to get the same colour carriage as a replacement.
There was also his inability to make choices. Many of our peers followed parenting philosophies that declared that giving children choices was not good for them. I didn’t agree, and was more than happy to give my children the choice between, for example, the red t-shirt or the blue t-shirt, or juice or water, or an orange or an apple. In Cameron’s case, I wondered if perhaps the no-choice people were right because as soon as he was presented with two things to choose between, he would scream loudly and run away.
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