This entry is a more personalized follow up to the original from August 2013 where I looked at the role of routines and structure as it applies to the lives of a good number of littles, not all obviously.
Since writing it, It has become clear to me through conversation and observation much of that rings true to differing degrees to a number of us which I suppose kind of validates it but for some of us, additional disability related matters do come in.
For some of us, the limitations are such that what might (cos we're all different) be more a relaxing way to live outside of the demands of work say for some merges more in with in many respects is the limits of our everyday functioning.
It's never the easiest thing for me to say but with the combination of physical disabilities as well as developmental issues that leave me struggling at times with what most past their mid teens can cope with, such considerations as having some fixed routines and structures are critical for getting the best out of life as we can and some sense of independence.
For me, such everyday tasks like going shopping are impacted when you find it hard to recognize what you're looking for, working out how much things cost, handling money and then trying to communicate with the assistant take a lot out of me so I'm feeling quite stressed so if then add things like fresh multiple upselling offers at the tills when I can't process verbal communication particularly well (not least to respond to), words being delivered quickly completely lose me and I'm stood there... Well, lost is the best way to describe it.
You feel like stomping your feet too.
The first time I became aware of this was about a year after after the playground accident that left me with additional brain damage having been drifting in and out of consciousness on top of that from birth, when out with a friend while physically disabled using a wheelchair that I was meant to helping him with, it became obvious he was needing to help me rather more with all of that. He could do everything other than physically handling items far better than I could.
I find situations like that very very stressful to the point I could easily snap cos there's too much going on for me to process which is why if I have to engage with such things having fairly common routines and expectations help. You may need to calm me down.
Similarly you could be busy going around people in an unannounced way and I may have no idea that you are and even if you do talk in passing, there's no guaranteeing I've made any sense of it so you do really need to ask me face to face and check I've understood.
I may only know you have from being told much later on!
That was something I found very painful during actual childhood, being the last to know anything.
I do find very necessary to have structures in place to ensure the needs I have such as knowing what I am to do, what I need to do to do it, who is doing what are met to avoid anxiety and do respond much better in situations where I'm told effectively this is what were are going to do next rather than just by trying make sense of what's not directly said. Cos I won't.
I find keeping to and following plans difficult either by distraction or just not getting around to doing them which is why I'm getting some one on one help with it and other associated issues around accountability and responsibility, for while there are very real limits on what I can be expected to do, I do need help to meet those even.
When you're not in any kind of for want of a better word, a more formal care structure, you're very much left on your own including any programs to help you with such things.
For me it can include both rewards, positive reinforcement in a more child like way that for some may come in a relationship such as "That's a good gurl" to deal with insecurities I may of tackled well or the completion of an assigned task as well as anything more discipline such as a firm spanking if say I'm on the edge of losing it in again more child-like way as anything very wordy just gets lost completely in a fog of words with me which either results in 'switching off' or getting more frustrated with you. That's the best use of twenty minutes with me-NOT!
It's also one reason I do say in all sincerity, in a very real sense when I'm out remember whatever number might be on the birth certificate, you do need to 'look after me' more like you would a child of 12 as I can lose track of you easily and when I'm lost I get very worried plus I'm useless with directions too.
I cannot say learning to come to terms with my needs never mind be honest about them to others has been easy but being able to accept them and prepared to work on those areas I have some potential for improving on is of more help than just flat out denying them.
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