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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DIY no sew weighted lap cushion

Well, it’s been a long week. T has been off school unwell at the beginning of the week which is always tiring. She gets very anxious when she’s unwell, and needs a lot of tlc day and night. She is now back at school, and improving but it has prompted me to look for new ideas to help bring calm!

One that I came across sounded potentially so multi-taskingly helpful that I thought I’d give it a go. Weighted blankets is something we’ve thought about for T but never quite got there. They are pricey or appear to be fiddly and time consuming to DIY (or at least they have become those feelings whenever I think about trying!) But yesterday I came across a no-sew weighted lap blanket/cushion which may give us the chance to find out whether T responds well to having a weighted blanket in the first place before I try and attempt to make one. And into the bargain, it uses mermaid fabric so it can be calmingly drawn and written into whilst using it.

It just so happens I have a mermaid fabric cushion cover waiting in a drawer for the right crafty moment so I have got it out this morning and got going.

The tutorial that inspired me can be found over on ‘lemon lime adventures’.

As is my usual crafting approach I raided the cupboards and used what I had. But I’m pleased with the initial result and am looking forward to T trying it out when she gets back. Friday night is movie night for us so it’s the perfect chance to give it a go. I’ll let you know how it goes.

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  • Raided the cupboards and found dried split peas, and little stones. Ziplock bags and of course the cushion cover.
  • Simply divided up the stones and peas, laid them across an old micro fibre towel and taped them down with box tape/parcel tape. Then folded the other half of the towel over and taped across to hold it all together.

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  • A little bit of careful jiggling and wriggling into the cushion cover, and zipped it shut!
  • Now enjoy!

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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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He made his dwelling place among us

I have a fun task this afternoon – creating some palace scenery for King Herod in our Christmas Eve family service this year. True panto style I’m imagining going big, bold and dramatic… he was known as Herod the Great after all…. ‘Oh no he wasn’t!, Oh yes he was!’. We even have a panto camel waiting to join in this year, can’t wait.

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Looking back into history it’s hard to grasp just how vulnerable a baby was, even born into a palace with guards for safety; servants to keep fires going and wood stores full; money for blankets, clothes, and beds; well educated advisers to help; it must have been precarious for the newborn and the Mum. Harder still to imagine the dangers for a baby born outside a palace in an ordinary home, or less. Imagine the dangers of having a newborn at a time when the kings whims were law. Of course Herod the Great could order that all baby boys under the age of two be killed in and around Bethlehem so he could keep a tight hold on his power.

When I think of the vulnerability of how Jesus came to us it astounds me. That the Son of God should hold so loosely to his home in heaven and come to earth in this way (as a baby born into a situation with little political and material security and minimal life expectancy, on top of the innate vulnerable dependence of being a baby) is unbelievable, isn’t it? It fills me with wonder and astonishment that he should be born among us like this, just the same as us, just the same as the least of us – us at our most vulnerable.

While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no guest room available for them. (NIV Lk 2:6,7)

Christmas with all it’s excitement and busyness, with it’s celebrations, family gatherings, feasts and presents seems a far cry from the moment Mary gave birth to Jesus. We had a card this year with a poignant and provocative picture of the manger in the foreground of a merry-go-round scene, busy with people and noise. It brings home to me the seemingly stark contrast between Jesus’ birth and what Christmas today seems to look like.

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Yet perhaps emotionally it’s not dissimilar. Christmas seems to bring into sharp focus our feelings of insecurity. Will the money stretch, can we get the gifts we want/feel we need to get? Will family all get along when we meet up or will it feel fraught with tension? Have we got enough food in, have we got everything we need? Is my house big enough, good enough for visitors? Are my relationships secure and content? Am I safe? Am I alone? Am I seen? Am I understood? Do I belong? Why does life feel so hard when everyone else’s life looks like a party? Christmas can make us feel our vulnerability. We yearn for home – the home that’s perhaps in our imagination, where there is harmony, peace and love, where every little detail is perfect and safe and cosy. That’s certainly not our real experience. Even putting up our tree this year triggered a meltdown that took a good couple of hours to calm.

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Difficult family dynamics, hard to manage meal times and bed times still happen despite Christmas and feel worse because of it! Meltdowns and shutdowns don’t stop for the holidays, in fact they tend to increase in frequency because of the bombardment of sensory input, and lack of routine – not to mention the number of people coming and going and the demands of increased social interaction. The stresses of the logistics of family life and church life seem to be at their worst at these times as we juggle all the extras that we all throw in because it’s Christmas. The pressure we put on ourselves to make it all amazing and good enough for everyone presses our I’m-not-good-enough buttons. And we keenly feel the losses; loved ones who have died, traditions we always hoped for that are simply impossible for us, family moments we have imagined but have yet to realize.

Jesus came into the midst of all that. The uncertainty, the sadness and grief for what’s lost; the insecurities within us and around us; and into the midst of the hopes and longings. He came and made his dwelling among us – not at a respectable distance where he was less vulnerable but right there at the heart of real, everyday, ordinary human experience. He came into it to reach us, to meet us where we are, despite the dangers, despite taking on vulnerability because of love. He came as a baby to be one of us and died our death to break it’s power. His love was strong enough to come to us, strong enough to free us, strong enough to gather us into his family through the new life he offers. The story of the baby born, fully God fully human, God making his dwelling place in the midst of our everyday is a story of hope. He entered into the insecurity and vulnerability of our existence to find us and love us all the way back home to him.

He was supreme in the beginning and—leading the resurrection parade—he is supreme in the end. From beginning to end he’s there, towering far above everything, everyone. So spacious is he, so roomy, that everything of God finds its proper place in him without crowding. Not only that, but all the broken and dislocated pieces of the universe—people and things, animals and atoms—get properly fixed and fit together in vibrant harmonies, all because of his death, his blood that poured down from the cross. (MSG Col 1:19)

In all the moments of insecurity, worry, stress, and difficulty this Christmas the story invites me to see again the truth that Jesus gets it, he understands it; he faced it too so he could have the chance to whisper ‘I love you, you are so precious to me’. (Even when everything is a muddle;when children don’t appear to listen when you read the stories about me; when people get along – and when personal space gets invaded, again; when you stay in with one child who doesn’t want to be out in the snow, and when you’re dealing with the over cold children who did go out to play; when there’s a meltdown; when you worry about the child hiding in their room; when the food’s just not right…. I love you, you are so precious to me.)

Let me take the mask off

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Masking – the art of camouflage that many (most female) autists spend a lifetime perfecting; the skilled, intentional blending into social surroundings, to become just like those around in order to become invisible & not looked at.

Both my girls are experts at masking. It’s a coping strategy they use in a number of social contexts, including school. But not at home, when it’s just us the masks come off and my girls can rest awhile (once all the pent up emotion, strain, and anxiety has exploded of course).

…”most of our participants are experts in pretending not to have autism — a phenomenon sometimes called ‘camouflaging.’ They said they wear a ‘mask’ or adopt a persona that is carefully constructed from copying the behavior of popular peers or fictional characters, or by studying psychology books.” (William Mandy & Robyn Steward)

The art of masking is pretty amazing really, and my girls achieve so much, and push themselves through so much because they do it so well. Both are fascinated by people, (as well as being bemused and overwhelmed, and anxious about them), and do a lot of people watching and deciphering. Both want to fit in and to build friendships among their peers. Neither like to feel singled out or looked at. Camouflage uses the skills of mimicry and echolalia, planning ahead and practicing phrases and gestures, and facial expressions – often in front of the mirror. It also involves concentrating on surpressing gestures and behaviours that have been noted to stand out or be unacceptable or misunderstood, like stimming for example.

“Most … said they found the effort of passing as neurotypical to be exhausting and disorienting, and many thought it contributed to their delayed diagnosis. There are no tests for camouflaging, and this is a major barrier to clinicians and researchers understanding and helping women on the spectrum.” (William Mandy & Robyn Steward)

As well as surpressing behaviours there is also an element of compensation going on in masking autism too. Learning ways of managing to maintain eye contact for example despite the pain it causes. Or finding out facts about a peer groups interests and role playing being into it too. It all takes constant effort.

“Being both autistic and an autism researcher can be a bit of a juggling act: it feels like wearing 2 very different hats sometimes,” Belcher told Neurology Advisor.

“The most important thing I’d like to convey is that ASD is not just a collection of impairments; it includes lots of strengths and abilities as well, which need to also be taken into account,” she said. At the same time, Belcher drew attention to the dangers of studying ASD as a “disease” and incorrectly regarding the spectrum as moving from “mild” to “severe.”

“A very high functioning woman, for example, who has learnt to camouflage her autism, may be rated by professionals as having very mild autism, when in fact she suffers a great deal with mental health problems as a result of constantly trying to appear ‘normal,’ ” Belcher told said. “There’s a lot more people with autism than we know of, and a lot of those people will be having a very difficult time. Professionals need to be more sensitive in their diagnosis of autism, and move away from these very black and white tick boxes of what autism is.” (Hannah Belcher)

Add into the mix the ongoing sensory demands of the day, and the fact that practiced phrases and gestures cannot guarantee the outcome you have seen happen before – because people don’t behave in a text book kind of way – and the picture is one that so easily becomes frustrating, overwhelming, confusing and exhausting. Masking is so very amazing, so very useful but it comes at a huge cost. In the general population it is estimated that 1 in 4 of us have significant mental health problems at some point, within the autistic community it is estimated at 80%. Anxiety disorders, depression, suicidal thoughts are not intrinsic to autism itself yet are so often present, in part as a cost of trying to blend into a world made for a different way of thinking and behaving. They are a cost of trying to live in a world which seems far less accepting of difference than it declares itself to be. They are also a cost of being perceived as not needing support or accommodations in contexts where autism is being masked.

Despite not wanting to stand out, there is a basic need to be ‘seen’ and understood, to be accepted and loved for our true selves. There is a need for safe people and places where the mask can be put down.