A Week in the Life of a Male Carer Uncategorized

Batch’s Blog: 22nd May – 28th 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 22nd May – Thursday 28th May

Half term is upon us and I have put a lot into making sure we are busy without stressing T out. He likes to do things but if he feels too busy he gets anxious and worried. I have also worked hard in making sure we are structured enough to keep him happy and in order and in the know but not too much so that he does feel like he is on school holiday. It can be quite the juggling act…

Part of the holiday will be at Mum’s with contact. Contact is still going really well with Mum working with us particularly with consequences for behaviour. This time T lost out on pudding once because of how he spoke to Mum, which is not bad for 3 days. I think this helps him when he’s having the consistency across the houses. And to be honest I think Mum enjoys it too because it means she has input in to how things are dealt with. Good for all I think.

But the main thing we will be doing over half term is going down to Taunton to stay with some of my wife’s family. It will just be me and T so it will be a bit of an adventure but we have been before so he does know what to expect. But the first thing I have to sort out is what will happen there. I have already been told we will be going out for a meal with some of their friends but I have now discovered it will be sitting down at 8pm. Now for most this would be fine but for T this would be a disaster because lack of sleep creates problems, mainly for the next day, and so I have to ask them if we can go earlier which will mean missing their friends. It is not an easy ask as I know they will miss out but they understand because they have witnessed T’s worse side. They have a son who has William’s Syndrome and so there are similarities but the main thing that is different is T’s defiance. Their boy is not like that. He can get cross and sometimes does not understand what is happening but he does not refuse to back down or ‘go with the flow’. He has more flexibility which I am hoping T will get with time. Anyway we get a table booked earlier at 7, not perfect but manageable, and so all is in place.

We have also decided to head to Stonehenge, it is on the way, as I think he will really like it and also there is a gift shop there so he will be happy but on the day we are to leave T is not doing well. He is angry and defiant, probably due to anxiety of the unsure, so it is a tough morning keeping him on track and keeping the mood calm. I am ready on time but T is not and after a while completely loses it. He thinks we are late, which is not the case, it is just that we are not going to leave bang on time (I have built in plenty of time for him to lose it because from experience I know that is no good me getting stressed too) and so I have to let him calm down so that he can cope before we are ready. The best way is to stay out of his way and let nature take its course. At one point he demands that I pick up the keys to show I am ready and to save time which makes me smile (to myself) but in his head that is the natural and honest thing to say. If you think of Autism as the honest pill then we are getting somewhere with it. Yes sometimes his words are cutting but they are honest. If he thinks you look silly wearing something then he tells you though he is not so good if you tell him something he is wearing is not cool, but oh well, so what, it’s about me getting so used to him and his ways. He will eventually come round to our ways with time. A trip like this has gone through my head so many times, looking for possible problems, that by the time we go I am completely on the ball and ready for anything.

And so we are in the car and on our way and T is happy again. And, to be honest myself, that is the last of the problems for the day. Stonehenge is great and though he moans about how far it is to the monument before he realises we can get a free bus we have a great time and he really enjoys himself, the icing on the cake being that the café sells his favourite brand of Ginger Beer. Yay! And after Stonehenge we head to Taunton and arrive bang on time which pleases him. T is happy and just to smooth things along we have a menu ready and T can choose his food with no worries before we arrive at the restaurant. And the meal, even though it is served 45 minutes late, is good and I have T in bed and asleep by 9.15pm which is not brilliant but will do. Just so long as he does not wake early tomorrow…

T is up at 6.30am and so therefore I am too. It is too early but I take him downstairs and after a drink I put the TV on for him. He finds a blanket and wraps up like he is at home and lays on the sofa and is quite happy. Later we grab breakfast and though he tells me he wants to stay in all day we insist he comes to town for food and a look around and he does not fight. He does want to go because he knows it is more fun but initially he always says NO due to his worries about moving and transition. I have learnt to just say what it is we are doing and then leave it to settle into his head rather than insisting straight away. This is why I plan everything in detail, it is easier that way. And again that is all fine. There is one small problem when T becomes fixated on an old typewriter in an antiques shop. He is insistent that we buy it and that he uses it for his homework in Secondary school and for the rest of the day he talks about nothing else but the typewriter. I feel a new obsession coming on though this one will be short lived because we won’t get one and that is that. Sometimes you have to be plain and clear.

So far so good I’m thinking, the day was great and has been smooth but the evening does not go so well. I can see it all clearly now, in hindsight, but at the time I did not see it coming. This is what happened. T had been promised a ride in a 2CV, something he did last time and really enjoyed, and on top of that my wife’s uncle has an old car he has been doing up (did I say T loves cars) which was going to be started in the evening and showed off to a few visitors. It’s all a bit exciting for T but I am sure it is OK. And to be honest it would have been but sometime in the evening someone had got some old coins out and T had been promised a look and talk about them too (he had brought his coin collect with him just in case someone was interested, another one of his obsessions) which I did not know about. Suddenly we have 2 obsessions colliding and with me trying to make sure T was in bed on time. Couple this to a very late dinner (8pm) and there you have it, something would have to be given up, something will have to wait, and T would not like it. So when it was time and I called him in for teeth and bed, I had been very clear all evening especially about the fact that there may not be enough time to do everything, T explodes on me. “I want to look at the coins, I haven’t done that yet”, and when I said NO, time for bed, he grabbed the car keys and threatened to throw them at me. At this point I needed to be black and white and so I was, there was no leniency at all, and he went to bed (it was already very late), which meant he was not very happy with me at all. I was the worst Foster Dad in the world apparently. It wasn’t the worst explosion but it was tough to handle because it was public and after he was settled in bed I spent the evening chatting about it and asking advice. Incidentally he was asleep by 10pm which makes me think that if I had offered 10 minutes for the coins maybe it would have been better, bed would have been earlier too, but, and this is why I continued, it would have meant moving a boundary that I had set and T definitely needs boundaries to function so I am not sure moving it would have worked. In the future I will be aware that I have that option though and it is one I can use to bargain with too.

In the morning when I saw T he was sheepish and reluctant to come to me and because of that I believe he understood what had gone wrong, what was his fault, he usually does with hindsight, it’s just he can’t manage it at the time emotionally, and so we hugged and I explained that 90% of the time things had been good and that we should only focus on that and after that we were fine. We left late morning, he didn’t want to but that is his transition issue again, and I took T to the Haynes Motor Museum as a treat, I told him yesterday that we could go if he wanted to and there was time. It was brilliant and even though there was a lot for T to stress about, being over excited, he did not at all. We did the museum as a smiley couple and then drove home, arriving bang on time which I think he appreciated.

So, all in all we had a great trip. I am really starting to learn how to work with him now, how to predict his moods, how to minimalise his stresses, and how to make change manageable, which I hope will help him for this coming year, especially with a new school coming up. Every day is an opportunity to learn more about him, about his special ways, and for him to learn about us and our ways too, and the more we all learn the better all our lives will be.

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