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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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.

 

is selfcare selfish?

So, it’s been a pretty full on week in the Porter household. GCSE exams began in earnest – a full timetable this week, and study leave starting on Monday; Paediatrician appointment for T (and all the next steps admin to do afterwards!); dentist for B,A & T; Thy Kingdom Come prayer room to set up at church… etc, etc. Plus of course the little extras  like a grit-filled grazed knee (never easy with sensory processing difficulties).

Needless to say I woke up this morning feeling pretty rotten really. Tired, weary, and my body feeling stressed through and through.

I am learning as I get older (prob not wiser!) that mornings like that are a sign I need some time out and some head-space. Thankfully it’s been a flexible enough day for that to happen really easily and I’ve been pottering in the garden – while the kids are at school. But it is difficult not to feel guilty!

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Andrew doesn’t get the same chance, so here I am pottering in the sunshine while he is busy finishing prep for Sunday, and taking a few forgotten items down to church for the prayer room. And later, when we’re all back in he’ll be the one cooking dinner – and highly likely clearing up afterwards too! The house around me is in a serious mess as always (I hold on tight to the saying ‘a tidy house is a sign of a wasted life’!!), and the loos need cleaning, clothes need washing, bed covers need changing – and I’ve already pulled back from some of the busy things of the week to try and prevent this feeling – and all I can think right now is just how desperately I need some space, some less intense, down-time before school finishes and it all gets going again. Health professionals, friends, the TV all tell me self-care is important… but what does it mean as a Christian? I was brought up on verses like these, and the example of wonderfully busy, always-helping-people parents:

 ..don’t just do the minimum that will get you by. Do your best. Work from the heart for your real Master, for God, confident that you’ll get paid in full when you come into your inheritance. Keep in mind always that the ultimate Master you’re serving is Christ. The sullen servant who does shoddy work will be held responsible. Being a follower of Jesus doesn’t cover up bad work. (MSG Colossians 3:23)

Always give yourselves fully to the work of the Lord, because you know that your labour in the Lord is not in vain. (1 Cor 15:58 NIV)

Isn’t self-care giving up, failing to meet these high standards?? Not being strong enough, good enough, enough?? Is self-care selfish?? It’s true, I sit here wishing I were stronger, more capable, that my body was more resilient and didn’t get so overwhelmed by anxiety symptoms so very often! But actually that is the body and mind I get to work with, that is my gift from God and it’s vulnerable, fragile, and real at the same time as being thoughtful, creative, tenacious. I simply cannot do more, and on days like these stopping for a bit is necessary if I am to stay well enough to be of any use to my family let alone anyone else, but is that an okay thing to think as a Christian?

As a father has compassion on his children,
    so the Lord has compassion on those who fear him;
14 for he knows how we are formed,
    he remembers that we are dust.
15 The life of mortals is like grass,
    they flourish like a flower of the field… (Psalm 103:13-15 NIV)

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I don’t know the answer – if there is one! But I do know I am a child of a Father full of compassion who knows better than I do just how my body works and keeps going, who knows how my mind, my emotions and body all hold together and who loves me. The same Father who gave us a rest day as a pattern for good living. The same who took Elijah to the stream and let him sleep when he felt he couldn’t go on, then fed him, and let him sleep some more. Maybe instead of self-care I could do with rephrasing what’s essentially needed on days like this – not self-care, rather Daddy daughter time… time to rest, sleep, eat under his watchful eye, and allow him to care for me before sending me back to it (13 mins till I set off for pick up!) keeping close enough to sit me down again when I next need a breather. It’s possible I could live with that!

 

 

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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