looking for joy

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Looking for joy can sometimes feel like looking for signs of spring in winter, or signs of new life in the desert. Anxiety, depression, stress, sleep deprivation, lack of self care, niggly illnesses all add up to a kind of numb weariness that continually ebbs and flows. A physiological vicious cycle.

Lent is good – it’s not just me taking time to visit the desert and acknowledge that desert times are a part of faith-filled living. 

Some weeks I ask myself what does joy look like – I often think it must look different to me than for others. I struggle with it to be honest. It seems over-demanding, too energetic, in my face; too bright. How can a word, a concept evoke that kind of avoidance within me? How can such a tiny word make me feel so inadequate, so full of failure. As a Christian I know I’m supposed to have an endless supply of joy, yet I am not good at taking hold of it or holding onto it, or perhaps sometimes even spotting it in the first place, and other times fear gets in the way of even going near it – whatever it is!

 ….the Lord made the heavens.

 Splendor and majesty are before him;

strength and joy are in his dwelling place.

Ascribe to the Lord, all you families of nations,
    ascribe to the Lord glory and strength. (1 Chronicles 16:26-28 NIV)

The one definition of joy that I have felt I can grab hold of I came across on social media of all places: ‘Joy is peace dancing’.

Peace that passes understanding, that does not depend on my circumstances or ability to achieve it. Peace that is a gift from God, the gift of being accepted and belonging with God who can carry the weight of the universe – and me – in the palm of his hand. Whose love is stronger than death itself, who can handle all that life can throw at me. That peace – dancing. That may not look like the joy that the world talks about but to me that resonates deeply. That joy is moments of quiet rest in the safety of the hollow of his hand, looking into his face and smiling back, and letting my heart dance, free in his presence. Here joy is not a demand, or something to find the energy to achieve, it’s simply present and tangible and without expectations. And maybe from here I can get more practiced at spotting this joy as it spills out of God’s hand into our lives – he is a God of miracles after all!

 

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drawing by T this week which showed me joy

“May we shout for joy over your victory and lift up our banners in the name of our God.” (Psalm 20:5)

Looking for joy in the barren places does have it’s advantages – when I spot it, grab it and hold on for dear life before it slips away – it holds a beauty and God-giveness precisely because it is so very unexpected. Like the wonder of crocuses and snowdrops standing tall and confident of spring despite the snow and howling wind.

 

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friends

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“She can’t be autistic, she has friends”…. (anon)

I must have heard this a hundred times! The truth is autistic people do have friends, want friendship and really value their friends. It’s also true that some of what makes up being a good friend and enjoying & understanding a friendship doesn’t come easily – in a sense that’s not different than it is for anyone, but the things that are difficult if you are autistic are there in every element of friendship everyday so it can get a bit complicated, exhausting and overwhelming at times it seems to me.

‘Once you have made friends, you have to work on your friendship. This is because you’re only going to benefit from a friendship .. if you continue to be friends with that person. Therefore, you need to use some friendship maintenance skills to keep the friendship going.

An analogy that might be helpful for this is learning to play a musical instrument … once you have mastered a skill such as playing a particular piece of music, you have to practice regularly to keep being  able to play that piece of music so that you maintain the skill in your memory’  (The independent woman’s handbook for super safe living on the autistic spectrum, Robyn Steward. p69)

A lot of the basic maintenance skills are things most people take for granted, most of us don’t remember having to consciously learn them, we are sometimes not even aware of them – they just happen when we are around our friends. Things like reading body language, hearing tone of voice changes, keeping up with the conversation, turn taking in conversation, noticing and understanding other people’s boundaries, likes and dislikes. These are all things that most autistic people have to consciously learn, and because most people aren’t aware how they learnt these skills it can be a very tough job to find someone to teach them!

Ongoing, ordinary friendship relies on these skills. For example, friends respond to each other’s feelings to be quick to comfort, say sorry or to share in their excitement, but people don’t express their feelings clearly and directly very often – more often through tone of voice, and body language alongside behaviour, and of course a reliance on a common understanding of how feelings are expressed in our culture, so there are a lot of different skills needed to be able to ‘see and hear’ a friends feelings in order to be able to be a good friend in response. If these skills have to be consciously learnt (and they’re not an exact science!) then this process takes more time, and is something that can go wrong quite quickly – and then be difficult to unravel and mend.

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Conversation is another ordinary part of friendship. But it is made more difficult if most people in a conversation seem to just know when it’s their turn to join in but to you it seems impossible to work out. The average way of learning turn taking in conversation is by noticing those raised eyebrow moments from parents or aunties when we were very small and just starting out; hearing the clearing of the throat of a grandparent and noticing the intent of it towards you, inferring it’s meaning as a reprimand or warning to wait. If you are autistic your brain just doesn’t learn by inference, and of course we’re also back to the not hearing tone of voice changes, not looking at people’s faces in the same way, not reading body language instinctively. These differences in learning mean that sometimes autistic people can dominate conversations unaware of other’s lack of interest or annoyance which can appear unfeeling or selfish, other autistic people sometimes never join in conversations in a group but wait to speak to just one person at a time which can appear very shy, withdrawn or uninterested.

‘Many people struggle to pick up on subtle social cues such as someone not sounding interested.For people on the autistic spectrum, this could be because you are monotropic (able to concentrate on only one thing at a time). Also, your sensory system may be mono-channel (concentrating on one sense at a time).’

(The independent woman’s handbook for super safe living on the autistic spectrum, Robyn Steward. p71)

It’s also very true that the context of any conversation makes a huge difference to how well these skills can be used even when they have been thought about and learnt. Many people who are autistic also have SPD (sensory processing disorder – or difference) which can mean they are vulnerable to being more quickly overwhelmed and so distracted by the environment around them – hearing all sounds equally rather than filtering out the ones not needed right now for example, or being in pain from the light that doesn’t seem too bright for anyone but you. Dealing with sensory overload (literally an overload of neuro-pathways) is not at all easy to do and still navigate a conversation well.

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One of the other different thing I’m noticing is just how difficult it can be in friendships when you are a very focused thinker. Many autistic people have very specific areas of intense interest which can hold their attention for an age, and at times can dominate their conversations, their choices in play, their imaginary world – at times pretty much everything. This can sometimes be difficult to bring into a friendship group, where other people have other interests and it is cultural for good friends to spend time enjoying and taking an interest in each other’s hobbies or interests. Again, a skill to learn. Sometimes it is even that the friendship itself is the intense interest and then it can get difficult when things change, or when new friends are also included, or when the friend’s boundaries over how often they feel comfortable about getting together don’t match. It can also be difficult in these moment to accept and understand that some people want lots of close friends.

Friendship is something I assume every parent worries over, and prays about for their children. For me it is also something I am constantly trying to dissect and understand better so I can anticipate hazards ahead and get teaching, showing and supporting the use of friendship maintenance skills. Because friends really matter, and we really value them.

it takes a long time to grow an old friend

 

 

bedtime

Sorry it’s been SO long since I last wrote – how are you all?

I can hardly believe we are now back in school routine, first week of the new term has been navigated – with Andrew away into the mix, a supply teacher for T at the end of the week, and a friend for tea after school today. Of course it seemed the perfect week (in a moment of madness, or desperation…not sure which to be honest) to throw in changing T’s bed from a loft bed to a low cabin bed and while we’re at it why not repaint too! what was I thinking??!

The desperation began in the run up to the new term, with bedtimes becoming as always much more of a battle, full of anxiety and adrenaline. Meltdowns happen so quickly and frequently when anxieties are high, and the aggressive, unpredictable behaviour that comes with them feels very unsafe in a loft bed. We got the loft bed when she was growing out of the toddler bed, to give her more space and under it to be able to create a hideaway – both of which has worked brilliantly. But for me the risks are increasing as she gets bigger and stronger, and the end of last week as school began to loom intensely it began to feel quite unmanageable.

So, we have dismantled the bottom layer of the high bed (thankfully it came in sections) and removed the ladder. I say we because I thought I’d managed that far on my own but when our lovely staff lunch had finished praying yesterday and were willing to help me lift the top section down off it’s lowest section it became quite clear all I had managed on my own was to get in a muddle – an allen key and others’ help found the right bolts to undo and put others back that were still needed and then we could lift down the bed!

As I was scheming and working out how possible it would be to do all this I also got to thinking about the colour of the room – one of T’s favourites, yellow. We had chosen a warm soft, almost apricot yellow before we moved in – and the decorators came in and painted – but somehow in translation the yellow had changed into a rather sour lemon if you can imagine that. Zingy rather than gentle. So I got to thinking that maybe this was my chance to tone it down a bit and bring a bit more calm to the room – every little helps. And knowing that even tidying the bedrooms can be an upheaval for the girls I was going to be causing an emotional earthquake by changing the bed, so why not slip in some new paint at the same time rather than creating another earthquake later on in the year? So far T seems to be mostly accepting the changes, and is coping relatively well.

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So I rummaged in the garage to see what we had enough of and found a dark creamy colour for interior walls and a small rather unreliable paint roller and tray and the painting has begun – 2 walls done, 2 to go! Feeling a bit like supermum! (that won’t last, I’ll be utterly exhausted when I finish it and the adrenaline rush subsides!)

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And that completes the first week of term. Kids were fed, hugged, played with and prayed with. Schools were attended, homework has been done (though still more to tackle), instruments have been heard, and swimming lessons, brownies, youth group were remembered on the right days – and chocolate was eaten! Hoping next week is a bit more run of the mill to be honest, but they rarely are!

 

 

 

 

calm woodland corner

Well, schools have finally broken up for the Christmas holidays, and we have our first visitors arriving tomorrow. So in preparation I spent some of today creating a calm corner for the girls (and anyone else of course!) to use when they need some space or need to work at calming down.

We have a little gap behind the sofa in the sitting room. It’s very small but maybe that is in its favour – it’s definitely a ‘one at a time’ kind of space!

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I have made a mobile above the space with paper snowflakes which moves and spins slowly as the air moves in the room. I have collected together some pine cones and wood, some laminated autumn leaves and brought a natural woodland feel right into the corner. T has a mood colour night light hedgehog so he’s moved in too.

Our scottie dog doorstop is soft and happily brings some weight onto a little one’s knees to ground them and bring a sense of safety. And our soft cuddly snowman sits ready for a squeeze.

To make use of the radiator that I can’t move out of the way, I have laminated some clip art woodland animals, and cut out some basic silhouette trees – added some magnets onto the backs and created a quick ‘make your own woodland scene’ which can be fiddled with, can inspire stories and become absorbing. As I cut the shapes out I tried to make sure there were no sharp corners or edges so it’s all smooth to touch.

Next I have made a lap size light box from a small household opaque plastic tub with a lid and some LED lights. I will put some tissue paper shapes and some coloured plastic counters that can be arranged on the lid and played around with enjoying the light.

Then I have collected some fidget toys, puzzles and sensory activities into a basket the other side of some cosy cushions. There are a lot of DIY ideas to try. We liked these…

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  • ‘our best bites’ have instructions for homemade snow globes
  • ‘red ted art’ has printable mesmerizing flextangles
  • ‘Views from a step stool’ has instructions for a Christmas themed sensory bag
  • DIY light box instructions from ‘the imagination tree’.
  • fabric marble maze instructions from Yvonne Reynolds (I’m making mine from felt, and tree shaped for my woodland calm corner).

But we also added a sand timer, a Christmas I spy jar we made last year using rice and little pictures and sequins, a tactile snowflake made from fluffy pipe cleaners and hair bobbles with big beads on, a couple of simple puzzles, a Christmas stencil with pens and a pad of paper for doodling, and a create your own story game that we have.

I like the printables for the calm down kit from ‘the chaos and the clutter’ which give suggestions for how to calm down. If I have time I will put something together on a woodland theme. Maybe ‘curl into a tight ball like a hedgehog’ or ‘take a deep breath like the owl flying’, ‘warm up the snowman with a tight cuddle’ ? Any suggestions welcome! …

 

 

 

 

It’s just a cold!

‘It’s just a cold!’ (or; ‘It’s just the straw that broke the camel’s back’)

What a month. We have limped through a sickness bug, throat infection, cough and heavy cold… and last night the throat infection was returning, and T’s cough & cold seemed to be having another blip…

School has had to be missed by all 3 at different times over the last few weeks. Church has had to be missed. Many of my diary things have had to be cancelled and take a back seat, and I’ve been late & last minute for many other things. Sleep has largely been missed too.

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The trouble with illness is partly the disruption to usual patterns and routines and the anxiety that causes. And when it goes on for a chunk of time it’s also troublesome to break the newly formed patterns like ‘sleeping’ on the sofa – you sit up on sofas so it’s an acceptable place to be propped up, whereas beds are for lying down in so being propped up in bed is awkward and hard to accept. Or the transition from being at home to having to go back to school – especially after the exhaustion of getting used to not being where you are ‘meant to be’ for the last day or two. And none of these transitions are very predictable, I can’t give advance warning, I can’t put them to bed at night absolutely certain that tomorrow will be the day to return to school, it has to be ‘lets see how you are in the morning’, or ‘we’ll have to check your temperature and then decide’…

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The trouble with illness in a family is partly high anxiety. Anxieties run particularly high about sickness bugs, but happen with all the common illnesses that come and go. Quarantines have to be established. Panic at other people ‘touching my things’ or being too close, ‘in my bubble’ reaches another level. Many times when one person in the family is ill others become genuinely physically unwell brought on by anxiety – which of course I can never be absolutely certain of, so the same quarantine procedure has to be put in place which although helps some makes that person feel even more unwell.  Yes there’s plenty of anxiety about catching whatever it is. But there’s also high anxiety about the different physical sensations about the symptoms. Some sensations are intolerable, creating regular sensory overload and meltdowns – especially difficult in the nighttime. Some sensations are just plain frightening, which causes huge unmanageable emotion also resulting in meltdowns.

The trouble with illness is the difficulties of communicating and understanding. ASD for us includes difficulties distinguishing emotions (Alexithymia is the name for this, we often think of it in terms of emotional literacy) which makes it incredibly difficult to even know what’s being felt and then there’s the other hurdle of putting it into words. Emotions and physical sensations all roll into one big bundle of overload that is very difficult to manage, self-regulate, and generally put up with! And all Andrew & I can really do is try to keep things as calm as we can (not easy) and try to help name things for them which can sometimes help to break that bundle down into smaller packages. We can provide some structure and safety, the temperature checking, the written down times for painkillers, the bringing of water, food and stories.

The trouble with illness is partly the need for medication, and doctors visits where they might poke and prod, or even worse ask questions! Medicines are a big difficulty, many we cannot even get near to our girls with, some can be swallowed but are unlikely to stay down, some we can eventually get them to take but the ritual that ends up evolving will be long (very long at times) and painstaking – having to be in the right place in the house, or followed quickly by the ‘right’ squash, or yoghurt, and often having to have complete privacy and silence to be able to cope with taking it… whatever the ritual becomes, it will be riddled with anxiety, stress (and the parent pressure of knowing it’s necessary for them to take in order to get better) and tears… which brings me swiftly on to…

The trouble with illness is partly the anxiety it evokes in Andrew & I about the long term impact it has on us all. We worry intensely about whether the break in the routine of eating (relatively well) will be near impossible to come back from. And despite it being a ‘good patch’, with weight gain and more energy than ever before it is something I have yet to relax about. We worry intensely about whether we are missing something serious when it is difficult to find out what is hurting/different/bothering them, so our usual high alert goes into overdrive. We worry that we may never get any sleep, ever – which may seem irrational, but seems to be backed up by an awful lot of evidence when I sit and dwell on it. We worry we will run out of the energy we will need to keep going and step up to the challenge of establishing ‘normal’ routines again once they are better.

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And we have to lean back onto our faith that we are not doing all this alone, or in just our own strength. That we are loved by a Father who knows we worry and loves us still. Who understands us and our three unique children especially when we are struggling to understand, and who knows what we need.