Day 18. Autism Awareness month continues …

April 18th. The journey continues …

There have been many moments I have thought I might go insane … or perhaps I am already insane and others have forgotten to let me know!

Water bottles. The germaphobe, the temperature nazi and the control freak! Last weekend all three boys were seated at the breakfast bar having a snack. Thomas requested his water bottle. I retrieved it from the fridge. He immediately asked a million germ related questions. “Mum, did you use my water bottle? Did anyone use it? Do you think we should just wash it again? Maybe I need a new water bottle.” James then requested his water bottle. “Mum, this water isn’t cold. I can’t drink warm water. Could you put ice in it? It makes me vomit when the water is warm!” Chris then requested his water bottle. “Love – this is the water bottle I use at night time not the one I use during the day!” I mean seriously!!!

Going to bed. When we put the boys to bed they both have these little rituals which must be followed. We have dinner first. Always. Then we have a bath. Every day. Then we choose a show to watch on TV together as a family – at the moment it’s “Tom and Jerry” cartoons. Then Chris takes Thomas to bed and I take James to bed. I have to be the last person to kiss Thomas goodnight. Chris has to be the one who reads to James. James always has instructions about what colour his light is (he has an LED globe that changes colour), how far open his door is, how many blankets he has on etc. Thomas likes to review what is going to happen the next day or more often, what’s happening in one week’s time. Then he needs to ensure he knows how many ‘sleeps’ it will be until that event is going to happen. Then we have to chat about what he needs to do and say at this event.

This afternoon James put on a Harry Potter robe which I recently bought for him. The boys love dress ups. For some reason, the fact that the robe didn’t zip up or button up really offended him. He was screaming and crying about needing to get sticky tape to close the cape up. He was really distressed. I simply kept repeating that the robe wasn’t meant to be closed and that Harry Potter’s robe didn’t close either. This went on and on – probably for 45 minutes.

At different points the boys have had different obsessional or repetitive behaviours. The one that nearly drove me over the edge was James’ counting! He would count up from zero as high as he could go but if he struggled at the end of every 10 and I had to help him, he would fall apart and then have to start from zero again!! Argh! Then we finally conquered that so he developed a new obsession… counting backwards!!! I honestly nearly went insane.

Eating. James likes his toast and sandwiches without crust. He also prefers that his sandwiches are cut into exact squares – sometimes rectangles are OK. If the toast is burnt that is not OK. Bread or toast must be the same, consistent colour – no brown bits. He doesn’t like to have different foods touching one another on his plate. We often use those tupperware dividers because it’s easier. James needs chewing gum regularly. It’s either that or chew his clothing, or gnaw non food objects such as remotes and tooth brushes. There is nothing in our home that doesn’t have teeth marks on it.

In class, he uses a fit ball for when he requires movement. He uses a mini tramp for sensory input and organisation. He has regular physical activity breaks and chews gum throughout the day to reduce chewing behaviours. James also uses weighted products – a lap blanket and a scarf – it helps to calm him. James uses ‘break’ cards for when he needs a break in class. This is to help him learn to self regulate and identify when he needs some down time to calm himself.

When I use any noisy equipment in my home I need to give both boys the heads up. Thomas dislikes loud noises and does find them distressing but not to the same extent as James. When I warn James, he will sometimes be able to tolerate it to a degree. He might block his ears and then go to another room and shut the door. Other times though he will run shrieking to the farthest room and hide under the bed with a pillow over his head. He likes to vaccuum but can’t tolerate the noise. So he does the vaccuuming wearing industrial headphones. Quite a sight!!!

Many people would say – just don’t entertain it! Just change the routine! Just refuse to indulge them! They are doing it for attention! They are controlling you! Why does they need all this extra stuff at school and in class? Do they really need it? Why don’t you just tell them that’s all there is to eat and refuse to give them anything else? I double dare those people to come over to my house and give these theories a try!!!! It just isn’t that simple. If I want to change a routine or habit, it takes up to two weeks to do it slowly and carefully. If I did change it up, the result would be massive meltdowns and huge amounts of stress that would in the end simply upset all of us and prevent the boys from sleeping well. With autism it’s just not that simple!

I’ve attached a video of James. There is no image, just audio because it was a meltdown which occurred during a shower. This meltdown occurred because I had to take him out somewhere at night (I think it was a school event) and I needed him to shower beforehand because he’d been swimming. Basically he got completely overloaded and overwhelmed because I changed the routine. He was shrieking about not wanting to be wet and blaming me for his discomfort. I am trying to wash his hair, get him clean and get him out as quickly as possible … oh, and “trying” to remain calm! I chose to share this because I’d like others to understand the implications of changing routines or expectations at the last minute. It’s not as simple as “just don’t entertain it!” … it really isn’t!

2 thoughts on “Day 18. Autism Awareness month continues …

  1. One of ours used to feel so much rage that even the act of talking to the teacher was too hard. We had a rainbow coloured chart on the corner of his desk where he just pointed to where he was on the scale so the teacher could work with him. All these little things help.

    • So very, very true! It’s so hard for others to understand how much the self regulation of these children is impacted by this condition. It’s so often difficult for them to express and verbalise their thoughts and feelings. Like many things in life, the presenting problem is not the real problem. xx

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