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.

IMG_20180813_190847737

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.

IMG_20180813_193750150

 

Advertisements

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.

IMG_20180528_133110458_HDR

  • 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!

20170513_165345

  • 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.

 

When it’s just too much to write

2016-08-07 19.40.12

So I’ve been busy – busy feeling guilty about not writing! Having tried to write really regularly missing 3 weeks has actually been hard. But there has been such a lot going on, and when I’ve had time I haven’t had enough energy, and when I’ve had the energy not the time!

15344273721901870229418

Well this week we are camping, and today is a wet day. So I thought why not share my view with you. Here I am surrounded by Lego and discarded crisp packets having already been to the gorgeous little stream and dabbled, paddled & doodled. The cousins and mine are plotting and planning Minecraft realms which they share, so here I am with a space to breathe.

To fill you in we have helped lead the holiday club at church. It was a good week, lots of laughter, games, crafts and chatting faith. T had some friends from school with her in her group which she enjoyed. For the first time A was a young leader, he was good at it… and even became the model for his groups technicolour Joseph coat.

Then we rushed our packing and set off to New wine, the Christian conference we go to each summer. This year we experienced our very own miracle – for the first time T went to every session of her age group meeting with the support of our place (new wine’s inclusion stream) which in turn meant I could go to every single morning session and seminar. That was such a blessing. Great grounded teaching from Jo Saxton about us being ordinary people in the hands and purposes of our extraordinary God. Refreshing worship and real encounters with God. Encouragement and challenge and opportunity for prayer ministry.

New wine is always about community. A practical reminder that I cannot, and am not meant to be able to do it all alone. I am made to live in interdependence with others in my community and the family of God. It is so easy to find myself, in the middle of the kinds of chaos we have in our family life wanting to withdraw and somehow protect myself and children from perceived judgement or misunderstanding from others. I really need regular reminders of how much I need others, of how I am not made to do this in isolation – however difficult that sometimes feels.

And this week we continue with community, camping with my sister & her kids. It’s great to share parenting, meeting the kids needs and enjoying time with them and each other. As a result of my planning ahead I signed us up to the RSPB wild challenge and that has steered us through some lovely nature based activities (that I brought a few bits to help us be prepared for) that we have had fun with. We have stargazer Found wierd and wonderful many legged sea creatures in rockpools and made art from leaves. There has also been a soggy beach visit! A surprise meet up with friends at a castle! Unexpected cuddles with cornsnakes and meercats. And a very very steep uphill walk or two. (Plus lots of biscuits & chocolate into the mix!)

Ps 18v29

 

 

 

planning for holidays

IMG_20180711_111754477

The summer holidays are nearly here!!!

(I say, half excited half terrified!)

It’s altogether a little bit overwhelming at the moment for the Porter family. The heat has been incredibly intense for us – keeping cool in hot weather brings with it particular sensory challenges. Noisy fans, different from usual clothes, sun cream, extreme brightness, open windows (noise we don’t usually hear in the house, insects coming in)… Of course it also gives us sensory opportunities to enjoy – I have written before about some of our favourite hot weather sensory activities – and we also discovered ‘skidding ice cubes with kittens’ this week too.

We are also near the end of term so there are lots of extras going on, each an exciting new challenge which is tiring for all of us. And there are more in the next week too – services, concerts, parties and BBQ’s.

img_20180704_151927317_burst000_cover_top.jpg

Do you like to plan ahead for school holidays, or do you prefer the freedom to be spontaneous? I am so looking forward to the pressure of the school mornings being lifted, but I do not like the thought of no routine at all – if I feel we need a day without any structure at all it has to be planned ahead for! And we call it a pj day – then it has expectations and routines all of its own! The first three weeks we have planned for us: the church holiday club (all of us involved either as leaders, young leaders or part of a group), then straight to New Wine summer conference followed by holiday in our usual campsite. Each of those weeks has their own order and lists, usual things to pack, play and do.

When we get back we have some time based at home, Andrew will be back at work and I will be balancing our need for ‘down time’ – lots of time for special interests; family together time – maybe a familiar outing or two; get together with friends; and getting us prepared for a new term – lots of questions, worries, fact finding and getting used to new uniform (not to mention the dreaded shoe shopping!).

I usually find it helpful to have ‘ready to go’ crafts, and games all to hand before the lack of routine (and anxiety) makes it almost impossible to plan and prepare anything.

20170811_172858

Here are some of my favourite go-to sites:

I love the ideas and printables on RedTedArt – great ideas for activities and crafts with everyday things, bookmarks and models to print and make.

A lovely list of (mostly) no prep outdoor ideas with notimeforflashcards

Always lots of new fun meaningful ideas with flamecreativekids

I will be busy collecting ideas I find on one of my pinterest boards

 

 

 

transitions and anxiety

Monday was ‘transition day’, the day when our local family of schools all have a taster day for the following year, whether that’s the next class in the same school or in a new school altogether. A day to meet the teacher, meet your new class mates and get familiar with the routine and lay out of a new place. For T it’s a change of schools, up to juniors. For A just a change of tutor and timetable. And also Tuesday was leavers assembly and prom day for B, really making it clear that the familiar routine of school is finished and it’s time to try and get used to the idea of college in September.

Add into that sports day, talent show rehearsal, school musical rehearsals, doctors appointments, unexpected visits to family, the house beginning to fill up with church holiday club scenery and its been quite a time since my last post, with huge amounts of anxiety, plenty of avoidance, tears and clingyness.

T is getting a lot more confident with reading at the moment, and as we walked to school this morning she read ‘transit’ on the back of a van.

“That van says transition day Mummy”

“It does have the beginning of that on it doesn’t it. It says ‘transit’, it’s a transit van”

quizzical look.

“Transit means to move something. The van is designed to help us move things. Transition means moving from one thing to a new thing”

“It’s moving me. Transition day was about moving me to a new school?”

“Exactly”

2016-03-12 10.45.07

Movement is a funny thing, it can be soothingly repetitive (as long as you are the one in control of that movement I think – nothing more irritating that someone else’s pacing or tapping!), it can on the other hand cause motion sickness, or dizziness, or tinnitus on days when nothing is still or quiet for a second. Movement can be exciting, getting us to places and people we’ve been looking forward to being with. It can be scary, getting us to unfamiliar or stressful places and people. Movement is tiring. It is tiring to think that life could be thought of as perpetual transit! But life is full of movement, of transitions.

When I got home from the school drop off (which by the way was really stress free this morning! Always unexpected and a relief) I played with Padfoot & Jaffa for a bit (trying to make sure they get good attention before I get stuck into work) and when they got tired they both climbed onto my knee and flopped to sleep purring loudly. It was beautiful. But I was kneeling on the kitchen floor, so soon my ankles were going to sleep, and my knees aching (must be getting old!), so I tried to gently move. Not even the smallest movement was possible without waking them. Eyes opened, ears pricked up as if to say ‘what? why? where?’ They readjusted, shuffled, tried to get floppy comfy again every time but the movement stopped them feeling safe and relaxed. After a couple of attempts of freeing my ankles and sitting differently they hopped off in disgust and went to find a predictable, un-moving resting place – where they have happily stayed curled up as I am writing.

IMG_20180627_104026695

They remind me of my girls. No matter how gradually, how small each movement, transitions make them twitchy and uncomfortable. They are unsettled by it. They both find it really difficult to visualize an unfamiliar place or event, they cannot prepare for change easily without support. So anxiety is high, meltdowns increase, and sensory overload is pretty much round every corner because senses are heightened when they are in constant alert.

There are things that can support transitions.

  • Good visual social stories can help with visualizing the unfamiliar and are tangible, and can be referred to over and over (and over) again.
  • A visual timetable for the transition, with definite dates and times.
  • Collecting factual information about the unfamiliar event or place.
  • chocolate (- that’s just for me!!)
  • A visual timetable in advance (and taken along) of each small step of the transition.
  • Doing the steps with someone familiar alongside.
  • Practice walks of new routes, or places.
  • support with emotions, identifying them and ‘sitting with’ them as they come and go.
  • prayer!
  • A steady pace with rests – not always possible of course! Grab resting places wherever you can (time with special interests, chances to zone out)
  • patience!
  • Keeping other things as steady and familiar as possible while change is happening – again not always possible but usually we can find something that can stay constant even if it is something as seemingly insignificant as not changing the bedding until next week if it’s all a bit much this week.

Is 41v10