understanding personal space

 

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excuse me – still here!

So how on earth do you begin to learn all about personal space, and respecting other peoples?? Everyone has a boundary at a slightly different distance. Relationship determines subtle yet important differences for each context. Different cultures have unspoken yet definite socially acceptable ‘rules’ about it. It’s not something that gets openly explained very often, yet we’re expected to get it right – every time, every social gathering, family meal, sharing of the peace!

For most of us it is learnt when we’re very young, one of those things that gets ‘picked up’ simply by being in relationships and experiencing a variety of social contexts. Learnt through picking up subtle body language cues; inference gleaned through experience; making connections between a variety of moments of cause and effect, carefully and correctly interpreted in the midst of social interaction. It’s a wonder it’s ever possible to get this right!

So what about those of us who don’t learn by inference? Or easily ‘read between the lines’? What if body language cues are a language yet to be learnt? And what if the way you see things leads to joining up the dots between cause and effect differently from everyone else, and connections are made therefore to different facts, different variables in previous moments of social interaction? How are the rules of socially acceptable interaction with others, understanding their personal space boundaries learnt??

I suppose the answer is, differently; from a different perspective; with an often refreshingly different approach and an analytical honesty that isn’t afraid of questioning a cultural norm.

I suppose the answer is also, painfully. Others don’t respond kindly to people seemingly ‘rocking the boat’, and openly questioning cultural norms – especially when expecting someone to be ‘old enough to know better’. Doing life differently can lead to feeling like an outsider or feeling disliked and unaccepted.

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special interests

 

Some call it obsession, some think it narrow

but in our family we love special interests;

with intensity, with all we’ve got

we focus, we explore, we research and find out.

Our knowledge creates a safe space in which we can curl up and rest.

Familiar and known.

Digging and drawing,

collecting and cuddling, playing and gaming,

gather the facts, devour the info.

It is expertise we can share.

Breathe it all in, get the sand between your toes,

the clarity of focus takes experience deep, deep, deeper;

you can taste it, smell it, know it.

It’s all or nothing,

all in, or not at all.

That’s the wonder and beauty of special interests.

And in the pursuit we see

fierce loyalty, tenacity against the odds;

a single-mindedness that isn’t swayed.

Peer pressure can’t touch this.

So yes, some may think it narrow, some think we obsess.

I guess some may even find it boring,

but in this family we love special interests.

In them we see echoes of a Creator, a Father’s heartbeat.

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one of those weeks

Firstly let me apologize that it’s been a whole month since my last post. I don’t really know how it’s become so complicated and busy for us as a family lately! But I’ve missed having the chance to sit and reflect, and chat with you. How are you all? Is life busy with you?

This last week we had a break from school. Andrew took A away for a holiday, and I had a break here at home with T & B – who was still at college. Inevitably as Andrew was away the week was challenging in ways I could not have even thought of! A friend I rang for help at one point commented that she couldn’t wait to read the blog, so here goes…

Andrew had taken the girls and I down to my Mum’s for an overnight stay on the Sunday. The boys were heading to the airport on Monday morning. I was, believe it or not, meeting up with my sisters for a spa day on the Monday and then we had tickets to travel home by train that night so B could be back in routine for college. It was a surprisingly good day at the spa actually, and really special to have the space and time together. We finished the day with a massive afternoon tea in a beautiful setting with live music – what a treat.

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The train journey was hard work, managing the anxiety and the dynamics between B & T. It was helped by finding seats on both trains, no delays and the lovely surprise of sitting opposite a travelling cat on our second train which distracted us beautifully. However when we got off the train and were met by a friend to drive us home (Thank you – you know who you are!) I realized I had left my keys at home in the scramble to get going the day before. Dark, raining, but thankfully not on our own on our doorstep! Well after a few internet searches, and phone calls we met a local locksmith who coped with us, and got us into our house again!!

Tuesday was a day spent recovering from all the stress of change, travel, people and the shock of being locked out!

Wednesday began positively, T was up and ready (even if full of nerves) to go our for a pony day at the riding stables she goes to. A friends parents came and picked her up and took her for me. B then went off to college and I breathed and then got the hoover out. B had commented to me that the sitting room smelled funny, so I went there first. We had eaten tea in there so I figured it would just be the lingering smell of chips and nuggets. But no, tucked in neatly behind the sofa was a present from the cats… a well dead pigeon. After a good talking to myself I set to and cleared it all up.

Was just putting the bag of rubbish outside when a car arrived and there was T back early – brought back by her friend’s Dad (Thank you!!). She’d fallen off her horse.

As soon as the door closed T fell apart, having masked at the riding stables, masked on the way back in the car and in lots of pain she just lost it. She was shivering, sobbing and not talking. So I tucked her up into my bed, got the calpol, and sat with her waiting for her to calm down. It’s so difficult when emotions and pain are so overwhelming that words just can’t get out, I feel very helpless in those situations. As soon as the pain relief should have started working I tried to find out what was going on. She was still pale and cold, but as I talked to her she began to overheat and then the sensation of the covers and clothes became unbearable and in all of this I could see she wasn’t moving her arm. In my head I began working out what would be the best thing to do. This reaction didn’t seem to indicate a bump or bruise. It was hard to think straight though at the same time as managing T. So I texted a friend, blurted out what had happened and asking what they thought I should do. She rang, we chatted and then she said she’d ring back in 5 with a plan! True to her word she rang back 5 mins later having spoken to a GP to ask whether T should go to a walk-in or A&E, organised a lift and sent them to come and get us (again thank you, you know who you are!), and thought through what I needed to take with me, and what to tell B about getting home from college – she was amazing!! (Thank you – you know who you are!)

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We sat in A&E, just keeping T as calm as I could. Triage, waiting, sent for x-ray, called in – it was broken. A clean break right through near the top of her arm – too high for a plaster cast. img_20190530_083804287.jpg

So we were sent home with a collar & cuff sling, and advice to keep pain relief going. What a day – what a week!!

When he got back  (thankfully no further unexpected challenges) Andrew asked me if the week had made me wonder about getting back into driving. Do you know it hadn’t, but it had made me so very thankful for all the friendship and support that we have been surrounded by being part of the church family and the local community. When I pray for what we need as a family, God does sometimes give me or Andrew the gift, talent or resource we need to face the challenge but more often than not he gives us what we need through other people. I don’t quite know how I would manage to parent, adult or stay vaguely sane without that network of support around us.

 

logistics of a short break

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Sunny weather, beautiful home-cooked food, the sea, sand and sky – what more could we need! We managed to get away for a few days during the school break to spend some time with family.

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It was beautiful to get to the sea. As T commented it is a place which can make you feel ‘free’; on the beach she had space; to talk, sing, collect, dance, watch, notice, feel. (Of course, sensory overload is never far away so short doses required!)

Getting away for a break is tiring though (Oh the irony).

Routines are very different. As a guest you don’t want to call the shots about what and when meals will be, and the unknowing brings its own anxieties when you already live with anxieties about eating. Our animals and familiar surroundings are missed terribly even for a few days. New surroundings means unfamiliar smells, textures, sounds all of which can be tiring to adjust to and difficult to relax around. Family time inevitably includes trying to balance different needs, some needing and wanting to see new places and explore new experiences while others need and want to do the same outings or watch the same movies as last time we visited.

Getting away involves major transitions; leaving and arriving and travelling in-between – twice! And it’s logistically challenging. Choosing outfits in advance, trying to wisely pack the right extras (toys, books, sensory fiddles etc) to keep things calm in all the little gaps, medications (forgot my own this time which didn’t help anything) and those essentials without which the challenge of the new cannot be faced. Making sure things back at base are ready enough for the return.

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Here are my tips for keeping short breaks as smooth sailing as possible in the midst of all the challenges ASC, PDA & SPD throw up…

  • Don’t give in to the embarrassment of taking too much luggage. I struggle with this one even when we are staying with family. Even a few days requires a lot of stuff for us. But the times we have tried to cut things out we have regretted it. If the dolls need suitcases too so be it!
  • Screens come too. If no internet access then favourite programmes must be downloaded in advance. Check favourite games/apps to see if they need internet access, and if so find one that doesn’t and try and introduce it well in advance of the trip.
  • pack some snacks and nibbles (or even a tin or 2) that will almost always be eaten to have on standby. Just knowing they are there can help reduce anxiety.
  • Do some things that you always do at that place so that not everything is new every visit.
  • We are National Trust members which has been so helpful for us over the years. Each new place has a very similar feel to it, and a similar set of components – a house to look round, a garden to ramble through, a play area, a cafe/picnic areas and toilets. So new places can be explored whilst still feeling manageable. Also being members (paying a yearly fee) means we don’t stress if an outing only lasts a short time. There is no pressure to make the day last if it’s not working for whatever reason.
  • Try not to forget essential medication (note to self!!).
  • Take timers/visual timetables etc if you are using them regularly at home. Don’t expect it all to feel easier.
  • Pack sensory toys and fidgets.
  • Anything that makes bedtime feel familiar in a new place needs to come too. Is it a particular blanket, their own pillowcase, a cuddly toy that’s always there, their own clock to hear the same ticking as usual, using the very same devotions or prayer – whatever it is, work it out, pack it and still prepare for some even more sleepless nights than usual.
  • Don’t forget to take lots of pics; stop and take a breath every now and then to remind yourself to enjoy it all and notice all the good bits (after all dancing on the beach is not to be missed!).
  • And when you get home, take a moment to be aware of the many things that happen much more smoothly because of the home and family routine you help put in place – you might need to remind yourself in a few days time!

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What is Pathological Demand Avoidance (PDA)?

‘Autism Spectrum Condition’ (ASC, previously ASD (disorder)) is an umbrella term in the UK gathering within it other particular autism profiles, or presentations of autism with their own nuances and quirks. Pathological Demand Avoidance is one of these profiles. I’ve been reading up about it, and about other’s experience of it because although I’m well aware every single child is unique there is something about this particular profile that resonates. It makes sense of some of the dynamics we see at home.

‘PDA is now widely understood to be part of the autism spectrum. Children who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This is rooted in an anxiety-based need to be in control. Aspects of the profile may be variable at different times and in different places.’ PDA Society

It is not yet used as a diagnostic profile in every part of the country, it depends on the NHS district you fall into. So over the last few years I have been keen to find out what I can about it because I have found it’s the most insightful and helpful profile for us to gain better understanding of behaviours we see, and to learn strategies that support. As well as the social and communication differences, and the sensory differences common to autism spectrum conditions PDA’s particular characteristics are:

The distinctive features of a demand avoidant profile include:

‘Individuals with PDA can be controlling and dominating, especially when they feel anxious and are not in control of their environment. They can also be very affectionate, charming, sociable and chatty, when they are calm and feel safe.’ PDA Society, about PDA 

I see many unique strengths…

  • fascinated by people, and quite passionate about getting to know what makes them tick.
  • observant and detailed
  • thinking outside the box and problem solving (seen in the many amazing strategies used to avoid demands!)
  • creative
  • feels deeply
  • desire to get things right

I also see such extreme anxiety about almost every aspect of living life in a world that seems confusing and relentlessly, overwhelmingly demanding. I see a need for  understanding, and loving support.

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