unexpected change

[JsMum]

I planned Js day today, but sadly I got the times wrong and it means I have had to make some unexpected changes to his day, he is going nuts, crying, getting totally distressed, he is not excepting the reasons to the changes at all, it is totally my fault for getting mixed up, but it wasnt done intentionally it was just a mistake and though to many other families this mistake may be small, to us its massive, Ive tried to reason with him but he isnt having any of it, he is so upset, how do others here deal with an unexpected change and when you your day just doesnt go to plan.

 

I do usually try and plan his week, and give him plenty of warnings and give him some time to prepare but today with the mixed up times its ment we had to change the day a bit and juggle the planned things, everything is still staying the same its just a bit later than planned but it hasnt lesson the pain for J, sometimes it is very difficult to stick to the plans, and this has ment an unexpected change.

 

For the Adults here with AS why is it soo painful to deal with unexpected change?

 

The main issue I can see for J is disapointment and pure fear his plans are not going to happen and he is so angry.

 

JsMumx

 

Edited July 31, 2010 by JsMum

[Sally44]

Alot is to do with the concept of time and understanding the passage of time, time management etc.

How they actually 'feel' when there is a change, or there isn't enough time to do everything is hard to gauge apart from their reaction to it.

An expert described it to me as like taking a shower without a shower curtain. For NTs, although we may 'feel' very strongly about things and get very upset when things go wrong, we have more 'control' (ie. the shower curtain) to contain the emotions (ie. the water).

And this 'control' is not just 'learnt', although that is part of it. It is also part of our biological make up that we can 'restrain' ourselves more easily. I think there is evidence of differences in the frontal lobes of those on the spectrum which can mean it is more difficult to control emotions.

I am not saying that those on the spectrum cannot restrain or control themselves. But the extra protection of the 'curtain' may not be there or may only partially be there. It all depends on the functioning level of the person involved.

 

It is the overwhelming full on flooding of emotions that those on the spectrum can find very hard to cope with and which my son finds very hard to deal with because he himself feels out of control and does not like it and does not like how it makes him say bad words or causes him to be impulsive and behave badly.

 

There could also be immature development and delays involved as well and therefore you are dealing with the emotional response of a much younger child to the one you have standing in front of you.

 

 

How do we cope with it?

Well we have lots of regular talks about what to do when things do go wrong. And we talk and act it through (role play) before there is an actual instance. Sometimes this does help him be more appropriate when something does actually happen. Sometimes it doesn't.

Lots of picture examples of what to do with change ie. story cards that tell a story, but at each stage there are options and choices that will mean a different outcome. Eg. johnny is watching TV and mum says it is time to go to catch the bus. Johnny either (a) turns off the TV and leaves with mum and catches the bus, or ( he refuses to leave until the programme finishes and so they miss the bus and have to wait another 15 mins for the next bus. etc.

 

I find that very often when the whole process is explained to our children they do get why that particular outcome happened ie. having to wait for the next bus caused johnny and his mum to miss part of the film at the cinema and that made johnny angry and sad. But what our children often cannot do is 'predict' what their current behaviour or choices will have on future options.

 

Don't know if that is any use at all, as you may well have worked all that out yourself anyway.

[JsMum]

Hi Sally your post was most insightful and it did help a lot so thank you.

 

J is emotionally around nine or ten anyway, and his communications though he can communicate and verbal when in distress he is really frustrated because he has expressive impairments.

 

I liked the Shower curtian theory and can understand it well.

 

I will look at getting some picture cards that can give different outcomes to situations.

 

And choices.

 

Thanks a lot, it did help.

 

JsMumx

 

[Sally44]

Hi Sally your post was most insightful and it did help a lot so thank you.

 

J is emotionally around nine or ten anyway, and his communications though he can communicate and verbal when in distress he is really frustrated because he has expressive impairments.

 

I liked the Shower curtian theory and can understand it well.

 

I will look at getting some picture cards that can give different outcomes to situations.

 

And choices.

 

Thanks a lot, it did help.

 

I think that learning about different choices and different outcomes is a good lesson. I bought some Scooby Doo CD Roms that solved a mystery and every time it was a different person depending on the clues you gathered along the way.

Having difficulties with either imagination or predicting outcomes makes it very hard to see into the future. That can cause our children and adults to insist on rigid routines and rigid times because they already know that that works. As soon as there is a deviation from that known formula, it all becomes unknown and causes stress and anxiety. That in turn can cause the sensory systems to become overloaded and hyperactive and reduces the persons ability to communicate at a level they can typically achieve when things are going okay.

In essence it all breaks down and the 'connections' that we see that give us our choices and options are not obvious to many on the spectrum.

Many times I feel that the diffiuclties they have are down to connections not being obvious. If you cannot see the connections you cannot see the outcomes, the choices, the options, the remedial action you can take, the reparation you can do, etc. So that time slot, once missed, cannot be regained or replaced in the eyes of the ASD child because they cannot see or work out the other options.

That is somewhat a generalisation. And obviously every child/adult will deal with things and cope with things differently. But I think it is relevent as a general idea and a positon to move forward from.

In my experience you can never assume the ASD child has the abovementioned skills unless they can consistently demonstrate them.

 

[Tally]

I've heard some people say that Asperger's makes the world confusing, and that feeling out of control is why so many people with AS like to control what they can as rigidly as possible. I don't know if this is the case for me, I don't know why I need a routine so much, but it is a theory that makes sense to me.

 

It is something that I have got better at coping with. I remember my first Christmas at work when I was 19. We had an extended lunchbreak and a special meal. I couldn't handle this and went out for my standard lunch hour by myself and my boss couldn't understand why I had come back from my lunchbreak at the usual time instead of taking the extra break

 

Just recently I had the opportunity to change my hours at work so that I could take on a few extra hours and earn more money. I need the extra money! Even so, I put off making the decision for as long as possible because I was worried about the change. I am pleased to say that I finally did agree to the new improved hours because I realised that my only other choice was to get a whole new job. I have been working my new hours since May and am still not really used to them.

 

I think it is important to learn how to deal with unexpected changes, because they do come up in life and we can't always prevent them. And normally, it actually turns out OK and nothing bad happens as a result. That's an important lesson to learn as well.