A Week in the Life of a Male Carer Uncategorized

Batch’s Blog: 8th May – 14th May


T has been with us for about 6 months. He is 10 years old and is diagnosed with ASD though it seems quite mild. Some of his symptoms that are attributed to ASD could also be just down to the fact that T is a 10 year old boy. In general he is a very happy lad but one who has moments of anxiety and has some problems dealing with his emotions. Because of his condition he does get fixated on things so he has a strong passion for cars and certain movies and TV programmes and at the moment he has a sometimes unhealthy obsession with Loom Bands (tiny little elastic bands that the kids make into bracelets).

I am married with three children, one at home, one at University and one living just down the road, and I am the main carer as my wife has a full time job as an Assistant Principal at a Sixth Form College.

Friday 8th May – Thursday 14th May

So it’s been a fairly quiet week without too much conflict. I’m not sure why that is. Well actually that’s a lie, I know exactly why that is, it’s because we’ve been working with Linda Woodcock’s low arousal approach to T’s autism. I wasn’t sure it would work but it does seem to, not always but it is certainly helping us. There is still a lot to learn, particularly with consequences of poor behaviour, and it’s certainly not perfect, but it has been gentler on the head that’s for sure.

Let me give you an example of how we have used this low arousal technique to good results; Last weekend we had some friends down for the night and they were bringing their dog too. T was already pumped up because I had told him that we would be going Go-Karting with them, the absolute idea of perfect happiness for him, cars and animals, and so he was a bit over excited and over excited can mean that he does not always respond in the right way just like when he is anxious. It must be a tough world for him sometimes because if we are to believe Linda then when he is highly aroused he is not in control and that can come from worry or excitement (Linda told us imagine him as a 2 year old emotionally but with the ability to talk like a 10 year old).

Anyway he had been quite rude to us most of the morning while he waited for our guests and dog and not very helpful with reminders about clearing up and brushing teeth but instead of picking him up on it we let it pass. Actually that’s not true either, we just made sure there was plenty of time so he could do things at his pace. Unlike other children who may show their excitement through being noisy or funny or silly T’s comes out as rudeness. I am sure that sometimes the energy inside just comes out that way. So the low arousal method of not pushing him when he is aroused helps but for us it is also understanding that it is not about us letting him get away with poor behaviour but that it does not necessarily mean that what comes out of him is about what is happening now so he may be rude about breakfast but what it means is he is anxious/excited about the things coming up in the day.

Once our guests were here T settled for a while. He was more polite and biddable and quite happy to sit and chat and did not seem tense. A bit later my wife and her friend went off for their horse ride so T, her husband and I took the dogs out for a walk to burn some energy before the karting. Although it was fairly relaxing T started to get stressed half way round the walk and kept asking for things he knew I would say no to; can I have an ice cream, can we get some sweets. Possibly so he could argue with me as this would fit with his expectations of high arousal and he also started worrying about time. He became more and more rude and agitated about mundane things but clearly this was because we were off to the Go-Karting soon and he was nervous/excited. He wanted to leave straight away but I knew there no rush as I had already put aside plenty of time so we could get there and spend some time looking around so T was used to the place before the fun started. But again I did not respond to the rudeness. Obviously I pointed it out (if I felt it was non-confrontational), modelled the correct way to say things, but I did not push too hard. And because of this there were no full on tantrums and the atmosphere was very calm.

Finally we set off and on the way I spoke to T about listening carefully to all the instructions. I was worried that his nervousness/excitement would lead to him doing something silly because he had not listened and so I wanted to be very clear to him that Go-Karting is a serious sport and that these karts went very fast and that therefore it was very important to follow all instructions properly. And he listened, even when he got there and he was super excited, literally bouncing up and down on the spot, he still listened. And what a star he was. I didn’t think playing on the PlayStation would be enough for him to learn the ways of car driving but it was. He had no problem handling the karts and had, in his words, ‘the best day of his life’. And he was as happy and chatty as anything, in the best of moods.

After the Karting we stopped off at a favourite pub of his to eat and everything, mood-wise, that had happened before just went out the window. Why, why, why I thought. This was not a new thing for me to witness but something the guy with me was massively surprised with. As soon as we arrived at the pub T’s mood changed into one of defiance and rudeness. Previously, before Linda, before low arousal, I would have been saying to myself ‘the ungrateful boy, after all I have done for him, and this is how he repays me’ and that kind of thing and it would have made me cross but today I whispered into the guys ear that we needed to just go with it, choose the easiest path and don’t fight him – the low arousal approach. He is not being deliberately rude it is just rudeness comes out under stress. If we challenge him then he will explode. So we endured 10 minutes of rudeness and of him being very bossy and telling us what to do before we were sat down and eating. And then he was calm. A bit later, while T was in the toilet, I explained to the guy with me what I thought had happened. As soon as we left Go-Karting T’s emotional connection for it was gone and all he could think about was getting the right food, the next important thing to him. It was like he had just woken up and it was a blank canvas. He was not being rude he was getting what he wanted. And he was in transition, moving from one feeling/place to another. Now I know this word, transition, because T is going through a massive transition right now with preparing to go to secondary school but I had not realised just how much transition can affect him in all forms of life even when he moves from one thing that is important to him to another or even one building to another. And that is his autism. Food is very important to T, as WAS karting, and so once we left karting that was gone and eating was all he could think of. In his eyes he was not being rude, he was being direct. In my eyes I started to see a clearer picture of him.

The rest of the evening was fine and T was excellent but in the morning (he had contact with Mum which often makes him anxious) he fully exploded on us over not having a shirt to wear. I believe he was tired because he had gone to bed a little later than usual. It wasn’t much, just 45 minutes, so we did not think it would do any harm. He was yelling and banging and generally not in a good place but again we kept out of it; we did not feed the fire. We made sure he was safe but that was it. We let it blow itself out. This of course was very hard but the logic here was that if we had tried to resolve the problem it would have made it worse and at least by keeping out of it we did not allow ourselves to be emotionally connected to it. And it seems to work. I have, it seems, unbeknownst to me, been fuelling the fire by challenging behaviour that T cannot control, particularly at times when he is too emotionally aroused. But, and this is still a difficult part to work out, and like I said at the start of this piece, we don’t let the behaviours go unnoticed it’s just that we choose to confront them at better times, times when they can be addressed more successfully because he is less emotionally aroused.

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