Tag Archives: plan

Autism and issues with my routine ….

Last week I wrote a blog about my new routine and how it has been helping me get more done, and feel better about myself, and while that’s true it would be misleading to leave it at that, and not talk a bit about some of the things that can, and have gone wrong with it. These are things that have gone wrong this time, but could also go wrong with any routine; so they are not issues with the routine itself, instead they are things that happen that impact on if, and how I can stick to my routine.

Sometimes it`s hard to establish a routine: What I mean by this is that for me if you do something a few days a week it`s not really a weekly routine. So when I plan out what I will be doing on each day of the week (planning to do the same thing each day) and then have to say “ Well not on Wednesday because I have to go out, and not on Friday because I have to go out then too.” It feels like I am not taking the time to get myself set in a new routine. Of course life throws up things you need to do, and I would not be able to stick to the same plan every day of my life, but if I can`t even stick to it for the first week how am I meant to feel like it`s a daily routine? If I only do it a few days each week it`s hardly a routine. The best thing would have been to clear a week, and do my routine each day so that I was in the swing of it then start to change it as, and when it was needed to fit in the other things life throws up. This way I would have been set in my routine, and more able to get back to it if it had to be changed one day.

Missing one part of it can mess up the whole day: If I say I am going to be up at six, work out and start my work by eight, and in fact I do not get up till seven then that can throw my whole day off. Why? You might be asking. I am at home all day after all, so what if I do the same things just an hour or two later than I was planning? And it`s a good point – that would be the smart thing to do. But sometimes it is not as easy as all that. Often I will try to get back on track after something has not gone to plan, and just find myself unable to do so. Try as I might the days where things go wrong early on hardly ever end up going well. If I am going to make a routine work I need to stick to it fully. Something as small as getting up a bit late can throw me off track for the whole day. Perhaps planning to get up as early as I do is the issue? I like to be up early and enjoy working in the mornings, but if I do have the whole day to work with perhaps I am less likely to fail to get up if I plan to get up a bit later? Or perhaps I just need to make sure I get to bed at a better time so I am less tired in the mornings? Either way that issue can be dealt with, but the point is that anything that goes wrong can mess up the whole routine for any given day.

Not having a plan B: Sometimes things will happen that you just can`t control, for example I get hay fever and sometimes it`s pretty bad. Some days it`s normal; just a blocked nose and a bit of sneezing – nothing too bad. Nothing I cant work through. But every now and then I wake up and it`s bad; I am sneezing every few seconds, my head hurts, and I am sweating and burning up. I feel dizzy, and at times like this there is just no point trying to work. It does not happen often, and only ever lasts a day at a time, but when it does it messes up my plans. I spoke about how I need to plan my rest time too in my last blog, or I end up doing nothing, and this ties-in with that. If I find myself waking up unable to do my routine I am often unsure of what to do. Do I try and do it? Do I admit that I can`t and do something else? What else is there to do? If I had a plan B, a back-up plan to be used on days when I can`t stick to my routine this would not be an issue. The plan could be something as simple as “Watch a few episodes of a certain TV show”. That might not sound like much, but when I am overloaded or feeling the impact of a sudden change of routine it`s very hard for me to find something to do. This is in part due to the fact that I don’t want to do anything, and just can`t get exited about doing things when I feel that way. Therefore, if I were to think about watching a T.V. show on the day I would not want to do it, but if it was pre-planned “If I am unable to do my routine I will watch this show” the chances of me forcing myself to do it (and enjoying it) are much higher. This cuts down on the risk of me just sitting around feeling overloaded after a change to my routine.

Having too much free time: Free time is good, and for me it is needed; I don’t like working to a routine where every minute of the day is planned beforehand (some people do, and it`s just a case of what works for you). But I found that I was working until 12 and then the next thing I had planned was to read at nine at night. This meant I had a lot of time to fill. It`s not to say I did not spend any of that time well: I got films watched, I read and I did work around the house, but I do think perhaps giving myself so much free time in the end was not helpful. I could have half that time, and still have a lot of time to relax and do whatever I want to do. Again how much time is planned, and how much is set in the routine will depend on the person, so to a point I am just trying things out to find out what works for me.

So overall I would say my new routine is a good one; it has helped me somewhat, and has definitely made me feel better on the days when it has worked, but it`s far from perfect yet. But that’s OK, as I said it`s about trying things out, seeing what works, what helps and what makes things worse, and coming up with a plan that helps me to get more done and feel better. That takes time and there might be a whole load more things to learn before we get there, but as long as we get there in the end that’s the main thing. And even in the mean-time having some kind of routine, some basic plan for at least parts of my day is helping me do more than I would if I had nothing at all. Things might not have worked out right away, but they hardly ever do and a good routine is something that’s worth taking the time to get right.

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

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AUTISM: when you plan for a change that doesn`t happen …

It’s a well known fact that change is hard for people with autism. If we are going to cope well with it we need to spend time planning for it and be ready well in advance. But what if the time comes and in fact things do not change as we thought they would? Is that a good thing, and can we just get on with our old routine as if nothing has happened? I cant speak for everyone, but for me the answer to this is No. If I have spent days or weeks planning for a change, and going over it again and again in my head, and then the moment comes and I am told it is not happening that will throw me even more than the original change would have done. I can give you a recent example of this, and attempt at least to explain why it impacts on me in the way that it does.

Last month my Mum was due to go in to hospital for surgery. She would have been in for a few days but then after she came out she would have needed looking after for quite sometime. Things would have been very different; I would have been doing a lot of the jobs, we would not have been getting as much writing and ASK-PERGERS?social media done, and my Dad would have been coming around more. While none of this is bad in itself it would have been different, and therefore I needed time to plan it and get used to the idea in my head. We talked it over a lot, planned what time I might get up, what time I might do the jobs around the house, how we might still get some writing and editing done, what I might make to eat, and just about everything else. We knew we had to plan otherwise we were leaving ourselves open to things going wrong. As far as we knew we had everything planned and set up to deal with the change that my Mum going in to hospital would bring – only she ended up not going in.

I should point out that we did know her operation might not go ahead, and in fact I was not at all shocked when I got the text from her a few hours after she had gone to the admissions unit telling me there were no beds, and she had to come home. It’s just one of those things that can happen, and has been happening more and more lately. But even though none of us were surprised at this change of plans it did put us in a strange place. We were all ready for things to change; for the normal routine to be put on hold for a while and a new routine to take its place, and now none of this was going to happen.

So what is meant to happen in this or similar situations? Are you just meant to wake up the next day and get on with your normal routine – that thing you have been telling yourself for weeks you wont be able to do. For me it does not work like that; it has been a month since my Mum was meant to go in to hospital, and I don’t think we have really got back to any kind of normal routine with work, the house, going out or anything since then. That’s not to say we have not done anything productive, but we have not done it in a routined way. We spent so long getting in to the mindset that our routine was going to change that we have been unable to change back, and get in to our old routine when there was no need for change.

I don’t know about anyone else with autism, but I can`t plan for two possible outcomes in a situation like this. I can plan for the change of routine, but that takes so much planning, and so much time to get used to I don’t have any space left to make a real plan for what will happen if that change does not take place. Just looking at this one situation, how can you make a proper plan for something that is so uncertain? It’s OK to know in the back of your mind the change might not take place, the operation might be cancelled, but what then? When will it be rearranged for? A week? Two weeks? A month? Will there be a set date for it? Or will it just be when ever they can fit it in? All these things would need a plan of their own, but we have no way of knowing which one we would be planning for until after the operation was cancelled. What about things that we decided not to do as Mum would be in hospital? Do we plan to do them now that she is not going to be in? Or would it be best to just leave them?

For me it’s too much to think about and too uncertain to plan for. I can plan for a change to my routine – even though that is hard enough – but I cant make any real plans for a change to the change. I just have to deal with that as and when it happens. But that is not easy to do; not knowing what is meant to be happening or when tends to lead to nothing or not much getting done, and the stress of this added to the stress of the change can lead to meltdowns. This has been the case over the last few weeks, and I am not to sure what we could have done to prevent it. As I say planning for something so uncertain is hard to do, and there is something of a feeling that with so much change back and forth meltdowns were bound to happen.

You can find my book here http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum.html/

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Create a Reward Plan for your Child with Asperger Syndrome

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Even though I talk about how positive autism can be a lot of the time, it would be silly to try to tell people that it is a wholly positive experience.  There can be a lot of negatives that go along with it, and I am sure if you are reading this blog you know that for yourself.

For me, when I was younger, one of the biggest negatives was the frequent meltdowns I used to have; shouting and being aggressive.  I have spoken in the past about how distressing this was for everybody involved.  Because most of the time this was directed at my Mum, she would feel bad, and I would feel guilty.  It wasn’t until after I was diagnosed with autism, aged nearly nine, that we were able to start doing anything that really had any impact on these outbursts.

 My Mum devised something she called the Reward Plan.  I`m sure you all think you know what Reward Plans are, but this one is different.  First of all, even though my Mum created it, she did it with my input, and kept me informed of what she was doing the whole way through, so that I fully understood, and was comfortable with the plan when we started using it.

The main principle of the plan was to focus on positivity, and never punish or criticise what could seem like bad behaviour.  The reason for this being that we don’t see behaviour such as outbursts/meltdowns as being bad – it wasn’t as if I was choosing to have a meltdown – so to punish me for something I had no control over would have been useless, and counterproductive.

The idea was to give points for any positives that could be gained from a situation.  For example, `I calmed down more quickly after having an outburst – 5 points`   My Mum designed a chart with a dragon on because I really loved dragons at the time, and collected them.  It might seem strange, but within two weeks of implementing this programme my behaviour in general had greatly improved, and I had far fewer outbursts and meltdowns.  The same continues to be true to this day.  I can`t say that it will completely take away any of the negative behaviours that come with autism – I don’t think there is anything that can do that – and as autistic people don’t choose to have meltdowns these may continue as they have with me.  But for us the Reward Plan cut down the frequency and severity of my meltdowns, and made them manageable.

Without this plan, and the positive effect it had on us, I don’t know where I would be today.  This is why a few years ago we wrote our first book about the Reward Plan.  It wasn’t done with any attempt to make money – even though we do get a small amount from each sale – the main aim of the book was, and always will be, to try to help families who are struggling with their child`s meltdowns, to benefit from the same techniques that helped me.  I can`t promise you that the techniques contained within this book will solve all your problems, but I do think it would be well worth you at least trying them if you are struggling to cope with your child`s meltdowns/outbursts.

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 Based on the incredibly fast-acting effect our Reward Plan had on my meltdowns, I would recommend it for anyone, and everyone to try.  Even though the books title is Create a Reward Plan for your Child with Asperger Syndrome, the techniques can be adapted for people of different ages – if the problem doesn’t stop when you reach adulthood, why should the solution?  It can also be used for people with Autism in general, and for conditions such as ADHD.

 In fact there is no reason it simply needs to be used just for outbursts and meltdowns; over the years it has helped me to become more independent and sociable, as well as encouraging me to try things I might normally never have tried.  My confidence and self-esteem has increased greatly since my Mum created our Reward Plan.  I am now more able to make decisions, try new things, and make and maintain friendships.

One important thing to add – our Reward Plan was never intended to make me less autistic – the whole point of the Reward lan was to help me to gain the skills I will need to get by in the neuro-typical world as best I can in order to keep me safe, but more importantly to help me to embrace my autism, and to get the best out of it – to deal with the negative aspect of having autism so I can focus on all the positive things about being autistic.

If you want to take a closer look at our Reward Plan book go to http://jkp.com/catalogue/book/9781843106227 where it can be viewed and purchased J