From a very young age, James didn’t cope well with moving from one environment, situation or activity to another (sensory modulation). He would scream and kick because he didn’t want to get undressed for the bath, scream because he didn’t want to get into the bath, then scream more when it was time to get out of the bath and be beside himself getting dressed again! It was exhausting and it often took more than one of us just to manage him. He also coped poorly with going from sleep to being awake. After his midday nap he would often wake crying and would continue to scream for sometimes hours afterwards. Avoiding nap time yielded similar results, so it was a no win situation. We ended up developing a number of transition activities to help him more easily move from one situation to another. For example, he loved his bottle and he loved water. So when he woke up we’d watch “Thomas the Tank Engine”, have a bottle and then go and play with water outside.
From a very young age he was overwhelmed by too much sensory input. He detested the baby play gym. He seemed terrified and overstimulated by all those objects flapping in his face. He didn’t like lots of noise and movement. He disliked being in noisy environments with lots of people and he disliked people getting ‘in his face’. Shopping was a nightmare! I survived this due to home delivery and the understanding of the local shop owners in town. They were known to drop just the basics like bread and milk to me some days when leaving the house was just too hard. Bless them!
When James was almost 12 months old, a Principalship became available in St George. We were excited. This would get us that bit closer to Toowoomba (St George is 4 hours west of Toowoomba as compared to Cunnamulla which is about 7 hours west of Toowoomba) and also was a significantly bigger school, meaning we could probably settle in town for some time. We were really happy when Chris got the job! As many of you would know, St George is my father’s home town and I spent the first few years of my life there also. It’s a lovely place. We found a beautiful old home on the river just opposite the house where I had lived as a child, and we thought we were absolutely living the dream!
In that year, James became increasingly difficult. He became a serial escapee – climbing over fences, under fences, out windows! It was really stressful as we lived on the river! One day at about 14 months of age, he managed to locate keys, get out two locked doors and actually start the car!!! This is how motivated he was by cars – his absolute undying passion at that time! He would stand at the back door, look outside and cry and scream to get to the car. If we used the car, he wouldn’t want to get out. He would cry, vomit, breath hold and bite through his lips and cheeks in distress if you tried to remove him. One key thing to grasp about autism, is that once that thought is in their minds, you can absolutely forget trying to distract, cajole, remove the object they want … any of it! It is futile! One day, James cried for the car for hours and hours, it continued into the afternoon until he fell asleep, and then he woke up screaming for the car again! And this went on and on for days and weeks at a time! It is thoroughly dementing and exhausting. In the end, I had Chris park the car up at the school and we went everywhere on foot for a few weeks just to try and break the dysfunctional level of obsession with the car. It worked to a degree. From that point on, we always made a point of putting the car out of sight so there wasn’t a continual reminder in view.
Again, shopping was hideous! This is the part where I have my whinge about how unhelpful other people can be when you’re trying to control a challenging child. People would say the most abhorrent things to me or to James about his behaviour. Comments such as, “All that child needs is a good hard smack!” or “You’d be good candidates for that SuperNanny show!” or “Why don’t you do something with that naughty little boy?” generally resulted in me spitting semi-controlled vitriol at these people. As time has worn on, I tend to take these kinds of opportunities to educate people about autism (although I admit I sometimes a little patronising to the very rudest of these people!!). Sometimes I’m probably just wasting my breath, but many times it’s quite well received. They call autism the “invisible disease” because in many cases, these children look like healthy, ‘normal’ (whatever that is!!) children. I still wish people could go into ‘trying to help’ mode rather than judgement mode. The world would be a much happier place if we could all just work together and exercise a little more tolerance and understanding!!!