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”

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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.

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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

 

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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.

 

shifting sand

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The seasons change as surely as the tide comes in.

A new term begins.

New adventures, new challenges. Back to a different pace and different demands on our time. Groups begin again, homework will loom, clubs after school all fitted around vicarage life and ministry again as that too changes gear for term time. Just like being at the water’s edge as it comes in some of us rush in wanting the excitement of the sudden cold wave crashing over our feet and some rush in and then jump back as each wave hits; others hang back wishing we could face the inevitable a little more gradually, feeling a little more in control! I guess most of us fluctuate between the options…

Standing in the edge of the waves as they come in lets you feel their unsettling tug, shifting the pebbles and sand under your toes as it pushes and pulls. With each back and forth they are lifted and adjusted, re settled into new arrangements and places. Change is unsettling, unpredictable. It’s the beginning of movement towards the unknown.

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Change also reveals what is constant, what is trustworthy. In the anxiety and stress of change we reach out for something steady and safe to hold onto, and some things we try to rely on wobble and others prove safe and strong. I love the paradox of the verse in lamentations. God’s love is both forever new and forever constant, faithful. It is in the ebb and flow of the change as we follow after his call, and yet is the solid, steady safe fixed point we can cling to.

B & I have begun using the ‘she reads truth’ app at bedtimes. We have been reading about God’s permanence in a changing, shifting existence. Tonight we were prompted to remember together that no matter what out circumstances or feelings, God’s word, God-truth is fixed… through every page of the Bible we hear God’s mercy-full ‘I Love you, I am coming to you’. It remains. It’s trustworthy. We can cling to it as things shift beneath our feet.

This is the way God put it: “They found grace out in the desert, these people who survived the killing. Israel, out looking for a place to rest, met God out looking for them!” God told them, “I’ve never quit loving you and never will. Expect love, love, and more love! (Jer 31:3 MSG)

I have loved you with an everlasting love; therefore I have continued my faithfulness to you. (Jer 31:3 NRSV)

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So, we’ve been back from our camping just over a week now and the dining room is now about a third full of stuff rather than so full you couldn’t get in like it was a week ago. Feels frustratingly slow progress though.

Trouble is I clean, sort, tidy away and then turn around to find other explosions of stuff happening everywhere else! (just this morning A ran over a new bottle of shower gel on the stairs, so I need to add ‘vax the carpet’ to the long to-do-list) Not to mention the explosions of emotion – sibling negotiating, stress from the change in routine, overtired but fighting it, meltdowns and the odd paddy (often ask myself why on earth we need those – this family are just so very talented at full on meltdowns, you know, the ones which are non verbal, aggressive, out of control, last hours, exhausting!).

So with the constant spiraling housework situation, and the constant emotional/behavioral trouble shooting, not so good sleep and a whole church service to prep thrown in it’s been a long week. We also tried a new discipline – a Sabbath time together – last Friday eve through to Saturday lunch. When we have fallen into a pattern I’ll let you know how it’s going.

I’ve also been aware of all the admin that goes with our family life. This week has been particularly busy with it and it brings a very particular tiredness with it.

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There are the forms to fill in for big organisations – for health professionals or DWP which inevitably mean going through a process of putting down in words the hardest bits of our family life – the unseen bits. The negatives, the ‘deficiencies’ (I’d like to see them as differences but to live in the culture we are in these are things that become obstacles in an inflexible system). These forms are asking for evidence, they feel cold, I fill them in feeling I’m having to put my children into a box just as I’m struggling to fit adequate explanations into little boxes on paper. These neat little boxes are an isolated snap shot of a bigger, vibrant picture, but this is not the place for the strengths. It is an emotionally draining process, but the support and opportunities we hope for as we fill them in make it a necessary one.

 

There is research to do – to prepare and resource myself for the academic term ahead. This week I have spent some time reading up anything I can about how to teach exam techniques – is this seemingly instinctive skill (as we seamlessly transfer knowledge we have often learnt from inference over many years of education from the lesson context into the exam room) something that can be broken down into steps or rules that can be taught? What are the ‘rules’ that unlock the meaning of an essay question? How can I teach how to find the question in amongst all the words? Do these questions have a knock on effect on how I need to be supporting the process of learning how to read for meaning while T is still an early reader? I also need to find out how to explain what ‘revision’ might actually look like in practice. How do others do it? What might work for us? Can we find ways we are comfortable with if we really think outside the box. How does B learn best, remember things best? How can I best help her to find a pattern that will be manageable, and how can I best prompt and support her getting into the rhythm of it. And yes, I am aware that my research as I sit waiting for people to settle to sleep is one thing, that hard bit will be sharing what I find out!

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There’s also ongoing admin that gets revisited in the breaks. The visual timetables, the looking for the right visual timetable app (still haven’t found one we’re happy with), the updating of the behaviour agreements which get carefully discussed with each separately and agreed on (including appropriate consequences if we go beyond 3), signed and displayed. We use the 1,2,3 magic style agreements to work on 3 behaviours only at any given time. All other difficult behaviours we try to distract away from and prevent, but the 3 we agree to work on together we try to consistently work on in a ‘zero tolerance’ way till they improve. Really good to see improvements in the ones we had been working on last term… we no longer need ‘hiding the hairbrush’ on the agreement! We also have agreed parental controls limiting the time spent on computers in term time, but these will be looked over nearer the end of the holidays.

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I also want to think about what pattern or book we are going to use next for regular Bible reading and reflection with each of them this coming term and get into a pattern with them. I quite enjoy the way we often need to be creative to make this manageable but the process of choosing the right thing together and enthusing takes time and is a bit fraught at times so I need to begin…

Anyway – it all has to be done… but right now, I’ve been ‘called away’ ( ie: pulled from my chair and demanded) to be the teacher again for T’s dolls Annie and Lucy who happen to be dairy and gluten intolerant, struggle with being left and come with a whole heap of admin of their own!! But it’s ok, I’m meticulously told the script and stage directions as we go so at least I know what I’m doing – it also helps that we’re now a few days into the game so I’m getting the hang of it – and finding I’m having to be corrected slightly less often!!

 

A change is as good as a rest?

Holiday time!

We have visited family on the south coast, not far from Torquay. It’s been our first visit here… (the thought of which, I must admit, made me feel very anxious and tired in advance of going!)

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Travelling

It was a long journey, we prepared a large bag of snacks, drinks, and each had a bag of distractions. So thankful for an Andrew who willingly drives (I haven’t been able to drive for quite a few years but that’s another story for another blog!), for music, our ancient in-car DVD player; for princesses, cartoons, and colouring; for books and imagination. Also very thankful for baby wipes, child locks for the back doors, for seatbelts, & calmingly snuggly soft toys…

Needless to say, despite all of the above we were relieved to get there! (frustrations and near-meltdowns are very loud and intense in a car) There was a wonderful welcome & cup of tea (the joys of visiting family), swiftly followed by a very very bracing walk along the beach front before supper – much needed!

Activities & outings

We were only a couple of minutes away from the beach so we had a number of walks there, shell collecting, a visit to the pier, and the play-park.

Before we went we had looked at what places we might visit & had planned and prepared for a visit to the zoo (carefully looking at the website, all the animals’ pictures, the map, the type of food available etc) so that was a whole day – quite an achievement for us – so often a day out is only sustainable for a couple of hours.

There was an afternoon visit to the nearby model village, which I remember visiting as a child. There was a trail to follow with particular characters to find on the way round which helped a great deal (apart from the difficulty of some of them not being in the same place as they were in the photo, or the one not quite matching the colours of the printing… distract, distract, distract!!)

We spent another afternoon exploring Torquay just a little; a girls outing choosing & trying on clothes (only possible because of Aunty M… don’t think I’ve ever managed that!), and a boys adventure in a big book shop and meeting up for coffee.

Food

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I always feel guilty staying with people, even relatives who I’m sure love us & accept us – we’re just not at all straight forward or easy around food! I always worry about offending our hosts when food is refused, or pushed around the plate. And it’s impossible not to feel stressed out by the stressy behaviour we routinely have around the meal table, watching it being endured by others!! But that said, the food was amazing as always, and apart from the above hiccups I think our hosts will recover given a rest! (…and hopefully we’ll be allowed back again! It’s simply an amazing gift to us that we are cooked for & tidied up after – it means we can both get a bit of a breather from the norm.)

It was just warm enough for picnics (all layered up and in hats) on our days out. Never easy but marginally easier than finding nothing that can be eaten happily in a restaurant/cafe or worse, finding that the food that’s usually acceptable is imperceptibly but very definitely different (meaning wrong). We coped ok at the model village despite a dog at the next picnic table, but the zoo visit was a tricky one – understandably really once a seagull had landed on my head (thank you God; don’t think we’d have coped if it had been anyone elses!) & stolen my sandwich!!  Let’s just say anxieties were running extremely high, for a while we tried Andrew standing guard but in the end we had to pack up & go and find an indoor spot (difficult in other ways, noisy and a funny smell – but the reminder of seagulls kept us there long enough to eat just enough – and we got a hot drink into the bargain!).

Sleep

…there’s really nothing to say… holidays don’t come with sleep in our family… there is always far less than usual… we had T in our room (that should say bed really) with us, the other 2 in their own spaces. But with a different routine, in a different place, with different smells and sounds sleep doesn’t come easily (even with melatonin, there’s just too much adrenaline) and when it does it’s always much more restless whenever we are away.

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So, now we are home again… the washing machine is on permanently, collected shells are drying (outside, they smell more of the beach than a walk on the beach does!) and being back in routine is just within sight… can’t wait, I’m shattered!