A Week in the Life of a Male Carer Uncategorized

Batch’s Blog: 24th April – 30th April


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 24th April – Thursday 30th April

It’s been an interesting week because we have had an Autism specialist come to us to assess T in his home environment. We felt that this was important because we were having quite a few tough days with challenging behaviour, both at home and school, and we have started asking ourselves if we were going about this in the right way. What we have realised is that we may have 22 years’ experience of raising our 3 children but a lot of the skills we have gained may not work when dealing with an Autistic child. So this week, since the visit, has seen us looking closely at our way of parenting and starting a reassessing process so that we can be sure we are doing what is right for T. This is a big year for him, going to Secondary school, and we want to give him the best chances to succeed.

The specialist was recommended to us by T’s social worker when we had a crisis meeting to talk about behaviour issues last month. Obviously I had been on Autism training on a few occasions and both my wife and myself had been reading up about the subject but what we were asking for at this meeting at this time was a more specific set of guidelines to help us with T and his behaviour. Up until now we had gained a generalised knowledge of Autism but because all people are different and all people with Autism are different what we needed now was a more directed set of tools to specifically manage T, and to help T to manage himself. It wasn’t cheap (in total it will cost £600 once she has come back and given us feedback) but because T gets Disability Living Allowance we thought that this would be a very good way to spend that money, after all it was all about providing T with the best information and tools to manage his disability and to get on with his life.

So on Saturday we had the specialist with us all day. It was odd to have a stranger in the house, observing us and taking notes, and it made T quite anxious. We had pre-warned him during the weeks preceding this visit because we knew he would not be that keen at first; one of the recommendations we have been looking at recently is about T first accepting that he has Autism and then for him to start learning about it and how it affects him. Only if this happens will he be able to start managing himself successfully in the future. And this day was very much about him accepting that he has a condition. Anyway we thought we had done a good job preparing him for the visit by breaking it to him slowly over the month but he still had a very tough morning before she arrived. He had a major meltdown because he ruined his breakfast by putting red sauce on instead of BBQ sauce. And by the time she got here T was starting to complain about a headache which is common for him in moments of very high stress (like at his Looked after Review). So it was not a good start but at least she got to see that side of him. And it was good for the specialist to see how we managed him and his headache too.

Obviously it was very useful to have the specialist there. Whenever there was an opportunity to talk, when T was not about, we asked questions about how we manage behaviour and what she thought was a good way to do things. And what we learned was that many of the ways that we manage challenging behaviours are not the way she would do it which is a bit scary and, like I said above, a complete challenge to the way we have parented before. We learnt a lot about how to view people with Autism too and some useful ways to see T, for example, although T is 10 and acts just like that and has a good command of language what we hadn’t fully realised is that emotionally he is probably just 2 and so a lesson learned straight away is that you can’t look at him as a 10 year old, and therefore have expectations that high, but instead you have to consider that you are talking to a 2 year old especially when he is emotionally aroused. Knowing that helps though it is still fairly hard to get our head round.

She also promoted the Low Arousal technique to us where she was telling us to first think in advance so as to be prepared for any issues that may cause T stress and then prepare for them and have a plan or just don’t do them. She also told us to get used to backing down, stepping back, particularly in moments of high stress because at that point he is emotionally only 2 years old and not able to understand even the simplest of commands. And this is going to be hard because she also spoke about changing how we use consequences for poor behaviour, for example, if he is rude he gets a warning and if he continues he loses pudding at dinner time. What the specialist said was, and I am still not clear about this so the next bit might be a bit confused, is that she does not recommend losing things for poor behaviour because he does not and will not understand because in an emotional state he basically can’t think straight. But we use consequences all the time and we believe they work. Since though I have had a little think about this and I wonder if she meant that we were therefore focusing on the negative too much, poor behaviour means this sanction, and not the positive. So we have adopted a little change of stance on this and we are now trying to use this, “If your behaviour is polite and you are not rude to people you will get pudding” rather than “if you are rude you won’t get pudding”. It’s a language shift that focuses on the positive and not the negative so I kind of understand it and actually the consequences remain the same so that might work.

So anyway that was last Saturday and now we are waiting for her second visit so she can feedback to us how she would manage T’s behaviour. But as you can see we’ve already started analysing our methods so there has already been a positive outcome. I think it’s going to be a tough journey because there will be a whole new way of thinking that we need to adopt which will be hard but if it makes T happy then the household will benefit because a happy T is less confrontational and through that a certain peace exists.

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