April 13th. The journey continues ….
I thought I’d write down a few examples of the kinds of behaviours that we routinely have issues with in our family.
Visiting medical people. We recently had to take the boys to the Optometrist for an eye review. I had to organise two separate appointment times due to the fact that they are so unmanageable together and often set one another off. I took James first. I explained where the Optometrist’s rooms were, what he looked like (we have been there before), what would happen during the examination and we talked about what kinds of things James might say to him. That was all OK … until James then became obsessed about having to get glasses so he could look like Harry Potter. The entire way there in the car he kept asking me questions like “Can I make mistakes on purpose so he’ll give me glasses? I definitely need glasses today mum. I’m getting glasses today Mum aren’t I?” and on it went. Then there’s the waiting room dilemma. Individuals on the spectrum tend to have issues with waiting. They often need to be taught how to wait. We did this with James when he was little by using wait cards and like … but it continues to be an issue. So with each passing second, his stress levels were escalating to the point where he was crying and yelling out “When are we going in Mum? We’ve been waiting too long!” As each year passes, this behaviour becomes less acceptable. James has the appearance of a typical, healthy 7 year old child. This kind of behaviour draws judgemental looks from others and gets him a lot of negative attention. I calmed him down by reading him a social story about staying calm on my iPhone (God bless technology!!!!) and thankfully the optometrist came to collect us (could have been the hysterical crying that expediated things!!!!). James was excellent for the entire examination doing everything he was asked. The Optometrist announced that he did in fact need glasses. James was so excited he nearly flapped himself out in to orbit. But then came the clanger!!!! The glasses wouldn’t be ready for 4 weeks. James completely fell apart. We left in disgrace and he screamed the entire way home. And after all that … I then turned around and took Tom back for round two! Ergh!
The need for consistency. Both boys are very literal and concrete. They are both very rules oriented. This is a good thing however it also has drawbacks. With typical children you can say “Just this once” and they comprehend it. Not with these kids. For example, earlier this year James was having a rather violent meltdown in the back of the car, smashing his head into the window and hurting himself and his brother. In order to get home safely (I had to keep stopping continually and pulling over) I put him in the front passenger seat of the car. We made it home in one piece. However, the next time we went out in the car, James assumed that sitting in the front was now OK, it was the new rule, and he would not accept otherwise. It took a lot of energy and copious strategies (and about 2 weeks of it!!) to turn that behaviour around and re-establish the original rule which was that no child sits in the front seat until they are 12 years old. Sometimes I wish that more people had an appreciation of this fact. Life often has lots of “just this once” type situations – you can have chocolate before dinner just this once; you can go to bed at 8pm just this once; you can sit next to Jane today but only because Liam is sick; etc etc. We change the rules for these kids and then we are surprised when they are confused and melting down. Of course the majority of kids can manage this really well but a number of the ASD kids will really struggle. Worth thinking about ….
Being prepared for change. Both boys need preparation for change. We tend to use count backs to prepare for transitions (like going to school in the car) and also social stories http://www.thegraycenter.org/social-stories to prepare the boys for what is going to happen or what might be different. Going anywhere or doing anything requires preparation and some forethought as to possible issues that may arise. An escape plan is always part of the process. If we go to visit friends, it’s great if they send us a few photos in advance so that the boys have a visual idea of where we are going and who we are going to see. After that first visit, they are generally OK. We tend to take holidays at the same place, in the same building, in the same unit every year because it works and the boys know what to expect. As they are getting older, they are developing a little more flexibility with holidays but photos beforehand are still a must. We also use an iPad app called ChoiceWorks – the best app I’ve ever bought. https://itunes.apple.com/au/app/choiceworks-visual-support/id486210964?mt=8&ign-mpt=uo%3D4
This app allows me to make a schedule using their picture library or using our own pictures. You can create a daily schedule in minutes. You can set timers and you can record audio over the top. Fantastic! When there are relief teachers we use the video recorder so the teacher can introduce themselves before meeting the boys. I can create messages for them to listen to if they need reassurance. Technology is a fantastic thing – couldn’t be without it!
Home-school issues. Many children with ASD will desperately hold themselves together all day at school and then completely explode once they are at home or in the car on the way home. This happens to us a lot with James. I know the minute he sees me at pick up time whether it’s going to be a colourful afternoon or not. I have had to resort to putting sandbag weights in his back pack to slow him down as he will run and hide on me when he’s in a state. The extra weight is also calming for him. He can have had a great day at school and then scream and cry for hours of an afternoon. This requires really good communication between home and school so that everyone is on the same page. It is also necessary for these kids that the same rules and consequences for behaviour are fairly much the same between home and school – that everyone who interacts with the child (home, school, friends, family) all use the same language. Good communication between home and school is everything.
The presenting problem is rarely the real problem. Again, this issue rings true for many kids, not just kids on the spectrum. You really have to learn to be a detective with these kids. You need to look long and hard for possible triggers, don’t simply just evaluate the presenting problem. For example, one day James was really upset and angry with me, refusing to come near me and being really belligerent. I disciplined him for it with the token system and things escalated further. Finally, he just screamed at me “You smell wrong. That is not the Mummy smell!” I asked more questions and he was right. I had run out of perfume and had used something different that day. I took him in to my room and showed him the empty bottle. I then asked him to choose a perfume he liked and everything was fine! He will notice if I change my ear rings, wear different shoes and he’s like it with others too. Things like fluorescent lighting, distracting noises, smells and excessive movement can all contribute to sensory overload and meltdowns. It’s worth waiting for the child to calm down and then ask them some questions. Often the triggers are not what we expect they will be. We can’t change the behaviour until we understand and appreciate the real cause of it.
Living with someone who is on the Autistic Spectrum makes you run constant diagnostics in your head. Why did that happen? How can we avoid it happening again? How am I going to calm this child down? How am I going to exit this situation with grace? How am I going to keep this child safe? He’s fed, he’s had a drink, what could have caused this behaviour? It is absolutely exhausting!!!!! Many parents would bring their children to school having already dealt with all this before the day even begins. Many parents live on adrenalin. When they present at your classroom door if they are sometimes unreasonable, the best question to ask is “Are you OK? Are things travelling OK at home? When did you last have a good night’s sleep?” – because you know, even with parents, sometimes the real problem is not the presenting problem as well. They may have had a hideous morning, their partner may be away, they may have had no sleep whatsoever – any myriad of things. Like I’ve said before, a bit of empathy and concern goes a long way.
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” (Leo Buscaglia)