selective (not selected) mutism

It’s a very unhelpful name, selective mutism I think. If we were in the middle of a game of word association it might be followed by ‘choice’, ‘choose’, ‘select’. I can understand how it can so easily be misunderstood as ‘shyness’, ‘manipulative’, ‘oppositional behaviour’, ‘stubbornness’. We hear the phrase and immediately jump to the misunderstanding that the child is selecting when to speak and when not to. It’s more accurate to understand it as the mutism is selective, not the child. It gets it’s name from the way that the mutism is only seen in certain contexts and not in others not because it is implying choice.

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The most helpful way I’ve found of thinking of selective mutism is to focus on the physiological. It is known that in moments of extreme anxiety or panic the body’s fight/flight/freeze mode affects us physically. Our body’s hormone balances for example are completely upturned, in order to get ready to run or fight. One of the physical affects can be the seizing up of the muscles needed for speech – including the vocal chords. So in that situation of panic speech is simply not physically possible. And that is selective mutism. An outworking of extreme anxiety. For some this anxiety is seen in group contexts (even of familiar people); for others with strangers; for others it is in particular places; for some when under the pressure of a direct question; or simply in front of others. It stems from social anxiety, social phobia and anxiety about demands. Responding to selective mutism as if it is ‘stubbornness’ or ‘manipulative behaviour’, or ‘a shy phase’ ignores and adds to the anxiety.

Selective mutism can affect autistics as well as others. And it can make life very challenging, and scary – imagine needing something and being completely unable to ask for help and get support. It makes being in new situations and places especially difficult when you know you cannot stop and ask for directions or check something with the teacher or your classmates. It can make learning hard work when you are unable to ask for help or clarification. It can make friendships and social times, like lunch breaks, really challenging.

There is really helpful advice and explanations at SMIRA.

I especially like way the article ends:

 Celebrate your child’s unique qualities
We cannot change the personality of SM children – and wouldn’t want to! They are naturally sensitive individuals who take life seriously and set themselves impossibly high standards. The downside is a tendency to be overwhelmed by novelty, change and criticism; the upside is an empathetic, loyal and conscientious nature.

How to support?

  • be kind – patience not pressure
  • surprises add to anxiety
  • give more time than you think for an answer
  • praise achievements
  • disappointment and disapproval are definitely not wanted
  • support the anxiety
  • help find safe ways and places to calm and regulate
  • enable coping strategies for anxiety
  • remember it is selective but not selected

It is not easy to truly understand or appreciate another person’s experience of anxiety – we all get worried about things from time to time, and it’s all to easy to assume other’s worries feel and affect them the same way that ours affect us. Our expectations are too often shaped by our own experiences. But to be able to support we need to put those expectations to one side and take on board the extreme level of anxiety being experienced by someone with selective mutism. It is not a choice. It will not be easily and quickly ‘got over’ or ‘snapped out of’. It is quite paralyzing. And can be so very isolating.

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sensory pit-stops: invitations to find calm

We are counting down now to beginning a new term – new teachers, new classes, and for two of mine new schools. There is definitely a need for me to be providing and enabling as many calming sensory activities as possible – yesterday I just couldn’t keep up!

Our emotions and physical responses to them are so complex I wonder how any of us actually learn to regulate ourselves. For many of us no doubt it comes easier than for others. Certainly if our understanding and recognition of different emotions is still a work in progress then instinctive self regulation is going to be almost impossible. It has to be learnt. So the more varied and frequent opportunities to learn to become calm and collected when feeling huge emotions the better.

These are some of my favourite activities to leave out dotted around the house that can become calming sensory pit-stops:

  • cornflour gloop – best in a room with a wipeable floor: cornflour and just enough water to make a gloopy paste in a shallow bowl or tub. This is great, it gives a sensation of resistance when poked and pushed and also soft fluidity when dangled or allowed to ooze back into itself. To dispose of it afterwards I leave it to dry out a little and then put it in the bin. Bits on the floor or table leave to dry then brush and scoop into the bin. (It blocks drains if washed down the sink)
  • playdough – We make our own, and then for extra sensory input can give it a scent like lavender, citrus, peppermint etc. The best bit of making your own is that it needs to be kneaded like bread dough as it cools down and the warmth with the kneading is amazing… just check it’s not still very hot before you hand it over to the kids. (Our recipe came from a good friend: 1 cup flour, 1/2 cup salt, 2 tbsp oil, 2 tsp cream of tartar, 1 cup of water with food colouring in if desired… beat it together as it heats up in a saucepan.)
  • painting- not perhaps something I would leave out casually all the time but this can be really absorbing; big plain paper, brushes, sponges, fingers etc, paint & imagination.

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  • wobble board – we have a circular board with a curved underneath that was being sold as a toning piece of equipment for keep fit, but we use it simply for fun balancing. When movement and concentration come together it can prove very calming. And this can simply be left out in a place with some space to be used in-between things, or on the way from one part of the house to another.
  • Animals – in our house one of the key strategies for self-regulation is to spend time with animals. Before we had the kittens days like these would be better if the guinea pigs came in and were easily available for cuddles. Now of course the kittens are always to be found somewhere in the house, and thankfully they crave attention and fuss. The only problem is when the attention given to one of them becomes a stress trigger for a sibling- either because they are not ‘doing it right’, or the kitten was found in someone else’s space, or its not considered to be ‘their turn’… but despite those (very frequent) moments I still think being in physical contact with animals brings such a lot of calm and reassurance.
  • blankets – and hot water bottles which add weight and warmth. Always on the sofa and beds ready to snuggle up in, hide under or tuck in tight around you.
  • water – another I cannot simply leave out, but there are so many opportunities during the day whether it’s to encourage lingering over hand washing, helping with some washing up, or allowing some pouring play between jugs tubs and cups. And there’s always the bath & shower on a day without time pressure which for our youngest is probably one of the best ways to really ground her when very anxious. Yesterday we resorted to a bath in the afternoon – and I got time to clean the bathroom at the same time!
  • a familiar activity – whether it’s a film that’s been seen a hundred times, reading a book that is known word for word, or a puzzle that’s a favourite, or a sorting activity with buttons or marbles etc that always gets done in the same way, a familiar activity can be very soothing.
  • music – a tricky one to balance everyone’s different needs at any given moment but brilliant nonetheless. As I write A is playing the piano which he gets completely absorbed in. B likes to listen to music on headphones which shuts all other hustle & bustle out. T loves to move and sing, and tends to want music loud when she wants it. Dance mats, dance games on the Wii, and listening to songs over and over again seem to really help T… but for the sake of everyone else we try to manage how long each time! Another absorbing and regulating music & movement activity is hand clapping rhymes and other nursery rhymes. T still asks for ‘this is the way the lady rides’ (a bouncing on a knee rhyme), and loves ‘a sailor went to sea, sea, sea’ etc.
  • hugs! – almost always on their terms of course, but being available for regular deep squeezing hugs is essential – and so easy, no prep required!

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  • marble bowl – simply marbles in a shallow wooden bowl. They can be swirled, spun, sifted through fingers and listened to as they spin gradually getting slower and slower.
  • mini sensory bin – again a simple bowl or tray, with rice, pasta, cous cous or sand in that is simply available to arrange things in (small world play figures or stones, shells, beads etc) and feel.
  • balloons – not for everyone I know, but the process of blowing up a balloon slows breathing down, and makes us take deep breaths in. And they are really fun when you don’t tie them but fill them and let them go over and over. And for the daring moments when the thought of the clearing up doesn’t phase you, balloons with some water in that can be held (it has a weight to it) and that move about in your hand are fascinating too.
  • dens – safe, inviting spaces to retreat into and block out the hustle and bustle. Soft glow light, flumpy cushions, paper & pens to doodle with and some cuddly toys.
  • tearing and cutting – leaving out an old newspaper or magazine with scissors if that’s appropriate. Prepare for easy to clear up mess, but T can be absorbed in cutting, tearing and scrunching paper for some time and this can be a good distraction from the times when anxiety begins to show itself as restless frustration.

 

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! …