A Week in the Life of a Male Carer

Batch’s Blog: 20th February – 26th February


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 20th February – Thursday 26th February

After several tough weeks and a lot of questions, research and meetings we feel that we have turned a corner, though how long that will last is another thing, but the truth is T has been a delight to be with this week and there is a lovely balance in our house at the moment. But here is the important bit; do we know fully why? Uhmmm! Let’s see.

So T had been at Mum’s for contact, because it was a school holiday, Thursday and Friday, and when I went to pick him up all seemed OK but with very little change. Mum had bought loads of gifts so that meant finding somewhere for it all to live in his room; he does have a lot of stuff for a young boy and he is a bit of a hoarder, and so the usual problem of what will need to go in the loft came up. We have about 5/6 big boxes of toys in the loft already and his bedroom is still jammed to be honest. But T was in a good mood and though he did not want to move things he was not digging his heals in either. Result! He also seemed responsive to our requests and so getting him home, through the bath and into bed was all good.

But the real change, we noticed, was on Saturday when he woke in a very positive mood. There was no fight about food and he was happy and did everything without asking like teeth brushing and dressing which are often trigger points for disputes. And the day continued like this and so rather than him asking for things we gave them to him instead so ‘You’ve been great this morning T, do you want to spend some time on your PlayStation?’ and things like that were said and it was great. We played, we joked and we had fun and boy did we let him know. Praise, praise, praise all the way! He went to bed after many hugs which is typical of him; always extremes so lots of anger or smothering love with no middle ground. Both can be hard but at least the love is not confrontational.

And on Sunday it was pretty much the same even when someone came round on short notice to go on a dog walk: he was up for it and wanted to show them the den we made in the woods a few weeks ago. Sudden change is not always easy for him to adjust to but this time he managed. There was an incident at the end of the day (the only one of the week) but it is one I am beginning to understand and on reflection take plenty of the responsibility. What happened was I got a text from the school saying not to forget it was ‘dress up as your favourite book character’ the next day and of course I had forgotten. It was teatime so not a lot of time to prepare. Now if this was my kids then they would have managed it fine and though T did agree with something in the end it was not easy but importantly, and this is what I have learned, it was not then that it blew up. You see the thing with T is once something like this strikes then his anxiety levels rise and though he may be able to cope with the first incident the next one becomes harder for him to deal with because his anxiety is still peeking. I can’t remember what the next thing was but that was when he exploded and it seemed so overblown at the time but when I connect it to the first incident then it is not. It is the knock-on effect that I have to be aware of. It made me realise how much I have to stay in control and be aware of what is coming. My calendar has taken on a new level of importance…And I need to stay aware of how one incident can affect another and so on. I can move on but for T sometimes that is not a choice.

And so to the rest of the week… T dressed up fine on Monday morning and to be honest he was up early and ready for school and on time every morning this week and there were no arguments at all. On Tuesday we went to his new after-school club which is just an energy club but it really does help and he is so content after. Plus because it is at the college that I work part time at I pick him up from school which he really enjoys. Just another element that makes him feel like all the other kids. I forget that part of his character some days. And the evenings were all good to but then again the school did not send any homework home so that may be a reason for that. But all in all it was calm and relaxed and, to be honest, normal. A family living together!

And in terms of our development and understanding of T’s needs we are going to use a specialist consultant in autism who can assess T and feed back to us ways in which we can improve our living together. This is a big year for him and we need as much help as possible to help him. Suddenly finding ourselves living with a 10 year old autistic child has been quite a journey for us to be honest and one we need as much guidance as we can find for.

So has it changed and have we learnt anything? You could say that we have given out loads more praise this week but this is not uncommon, we’ve done it before. T has just been in a much more accepting mood but I can’t tell you why exactly. This week it has worked but next week it may not. Noticing how incidents can impact on other incidents is important and so we will all pay attention to that more. And that is the crutch of it; his mood is so flexible and changeable and we don’t and may not ever know why. The key is our own understanding of what we have taken on and so we will need find out as much as we can about his condition, it is not easy for us to understand, but that way we will be best able to help him grow.

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