comfort zone

 

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In our household we talk about retreating to our ‘caves’ – the little cosy, personal spaces that are our escape places to retreat to and shut the world out of. They are not actually dark, or particularly cave-like at the moment but they have been at times; tents, dens, hidden corners under beds – even under sofa cushions, duvets or in kitchen cupboards at times. Safe ‘dark caves’ are actually really important. We need times where we can relax, guard down and know we are safe and all is well even if only for a short time.

Being ‘out of your comfort zone’ – being in situations, or doing tasks that are really challenging for you can be so tiring. I have been reminded of it this week. It was my turn to lead the singing at the toddler group – something I have been doing in different toddler groups for years yet still very out of my comfort zone! Without fail I come away from those few minutes feeling tired and drained. Context is everything isn’t it, I have sung with my own children, nieces and nephews since forever. How different it feels in a room full of expectant little ones – and their carers.

Yesterday I had a big out-of-my-comfort-zone day. It was an RE ethical debate for the year 10’s at secondary school, and I had been invited (and had willingly agreed I might add!) to be part of the panel giving my views on abortion, euthanasia and faith schools and then ready to answer questions afterwards. Exciting, invigorating, inspiring questions and insights from the students alongside shaking hands and legs and racing heart! I was in need of a darkened room once it had finished! But felt pleased to have taken part. Having the chance to explore different points of view, different faith beliefs and the complexity of these tough ethical questions is so vital. I’m always so thankful that these kinds of debates were always opened up for us around the table at home growing up and that we were always encouraged in finding our own thoughts and listening to the viewpoint of others.

On days where shaking hands and legs, and a racing heart are a big part of the experience a safe retreat space is needed. I would hazard a guess this is a daily experience for many autistic people facing situations, contexts and tasks that are challenging day in day out.

I spent some time at toddlers enjoying studying the church ceiling with a little one who I suspect was escaping to a safe retreat place for a few minutes, away from the noise and happy bustle of the large group (T does the same sometimes – often through a camera lens). We can find retreat spaces even in the most unexpected. Different places giving us that much needed rest at different times. Our loving Father God knows we need these retreat spaces. He offers himself as a hiding place for us. His presence the ultimate safe space of retreat. And just like we fill our cozy caves with things that we need to calm, and refresh us, God our Father’s presence is full to overflowing with love, faithfulness, acceptance and peace for us.

‘..hide me in the shadow of your wings’ (Ps 19:8 NIV)

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‘Come to me, all you who are weary and burdened,

and I will give you rest’. (Mt 11:28)

Whoever dwells in the shelter of the Most High
    will rest in the shadow of the Almighty.
 I will say of the Lord, ‘He is my refuge and my fortress,
    my God, in whom I trust.’

                         ………

He will cover you with his feathers,
    and under his wings you will find refuge;
    his faithfulness will be your shield and rampart. (Psalm 91: 1,2,4)

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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.

 

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.

 

sensory for rainy days

Whatever the weather we need regular sensory rich input in this family, especially when things are busy or there have been some particularly stressful events. Tonight on my way home from Rainbows with T it became very clear that more was needed – a 15 min walk took 30, it was raining and the feel of the water, the way you could collect water drops off the ends of umbrella spokes, the splash of puddles became utterly engrossing… it would have taken more like an hour if I hadn’t been nagging all the way home! It reminded me of B at a similar age, walks home from school on wet days were epic, and she would be so wet by the end we would need to wring her out! Wet through every layer of clothes, wellington boots full.

There isn’t always time for being out on rainy days, and sometimes it is too cold for it to be ok for them to get that wet outside. Here are some of my favourite sensory rich rainy day activities:

  • cornflour slime – so simple, and absolutely always a winner. Put cornflour into a bowl (fun in large or small) and add just enough water for it to be quite hard to get a spoon through, but gooey enough for it to slowly drip off the spoon when you hold it above the bowl. Apron on if there’s time, then simply give to the child… can provide food colouring to mix in – the mixing takes a lot of effort and so is remarkably calming, can provide extra bowls or plates, plastic spoons, knives & forks. Can add scent from food flavourings. Expect some mess, but leave it to dry afterwards and then it can easily be swept up. Don’t try to put it down the drain afterwards, again let it sit & dry out a little, then it can go into the bin

     

  • Painting not for the fainthearted but utterly brilliant! Most importantly choose a place which is easy enough to clean afterwards – if this is to be of use as a sensory input activity it has to be hands on & that is messy. Also have paper supplies at hand – as soon as one is finished I want to have a clean sheet seamlessly put in front of them, or the ‘in full flow’ painting just happens onto something else! When they 025_01were very small I laid paper on the kitchen floor on top of a large messy mat or newspaper and put ice-cream tub size pots with some (not a lot) paint in there on the floor too. Strip the child down to the nappy, place in the centre, and enjoy! The only job to do is to be ready to keep steering them back onto the paper, and to judge that perfect moment to end the activity. Andrew & I had a routine for the ending of this particular activity – it was warranted, it is very messy – he would run a bath when I placed B on the paper, and have it ready so I could pick her up and go straight there with her when we finished (at arms length if possible!).
  • Daytime baths are contained (on the whole), and easy to organise. We have a whole box of toys suitable to go in the bath but mine are equally happy with measuring spoons, plastic jugs, whisks, empty bottles and will pour, empty and fill for some time. Bubbles in the bath are a change – though with eczema aren’t helpful, we have also used blowing bubbles while in the bath which has worked but was tricky in that it was very exciting and so it was difficult to keep them sitting safely in the bath. Many dolls can be washed in the bath, barbies can go swimming, lego boats & houses on stilts are fun, and plastic toy animals are great too.
  • Cooking either real baking (which has the advantage of being edible, lick-out-able) or the indoor equivalent of potion making or mud pies with a few rationed basic ingredients like flour, semolina, rice etc. and some cake cases in a tin – to be honest it’s been a while since we encouraged that, T is very happy with the tub of baking beans and cake cases which is far less mess & waste.
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early baking with Nanny

  • sensory tray – an idea that came out of desperation I think, but we have a fairly deep sided large-ish wooden tray, and when B was little couscous rice, and lentils would get poured into it. sometimes she sat in it and enjoyed the feel of it on bare feet and hands. Other times I put cars or plastic animals in, or big spoons for scooping, or plastic garden tools which made good patterns and noises against the grains as well as scooping.
  • playdough goes without saying, it is great for calming, ordering, creative play. When you make your own playdough you can colour as you want, or can add scent, or even glitter. I use the cooked playdough method mostly (which is incidently good stress relief for me too, requiring plenty of hard going stirring as it heats), and when it has cooled enough the kids love kneading it till it’s glossy – it’s cosy warm and pliable.
  • 2015-12-07 23.04.49making sensory jars to use in a calming down space or that will fit into a handbag to come out & about with us is a lovely activity in itself. The treasure hunting for things to hide in it, the funnel and pouring of sand and glitter and the designing of the labels and ‘I Spy’ tag.
  • washing up – only carefully selected items not the whole family’s dishes after a meal, and with eczema not very often either! But it is well loved, and has a social element which many of the others don’t need to. This does need someone involved to dry up and keep the supply of safe items to wash.
  • marbles another quite by accident discovery when B was small, we found that marbles spin gently around a large wooden plate we have, making a beautiful noise, and satisfyingly gradually making their way to the centre. We have a marble run too, which is much noisier (a much more rattling noise) but sometimes that is just the thing.

What else do you find yourself reaching for? What do yours find calming & enriching?