bedtime

Sorry it’s been SO long since I last wrote – how are you all?

I can hardly believe we are now back in school routine, first week of the new term has been navigated – with Andrew away into the mix, a supply teacher for T at the end of the week, and a friend for tea after school today. Of course it seemed the perfect week (in a moment of madness, or desperation…not sure which to be honest) to throw in changing T’s bed from a loft bed to a low cabin bed and while we’re at it why not repaint too! what was I thinking??!

The desperation began in the run up to the new term, with bedtimes becoming as always much more of a battle, full of anxiety and adrenaline. Meltdowns happen so quickly and frequently when anxieties are high, and the aggressive, unpredictable behaviour that comes with them feels very unsafe in a loft bed. We got the loft bed when she was growing out of the toddler bed, to give her more space and under it to be able to create a hideaway – both of which has worked brilliantly. But for me the risks are increasing as she gets bigger and stronger, and the end of last week as school began to loom intensely it began to feel quite unmanageable.

So, we have dismantled the bottom layer of the high bed (thankfully it came in sections) and removed the ladder. I say we because I thought I’d managed that far on my own but when our lovely staff lunch had finished praying yesterday and were willing to help me lift the top section down off it’s lowest section it became quite clear all I had managed on my own was to get in a muddle – an allen key and others’ help found the right bolts to undo and put others back that were still needed and then we could lift down the bed!

As I was scheming and working out how possible it would be to do all this I also got to thinking about the colour of the room – one of T’s favourites, yellow. We had chosen a warm soft, almost apricot yellow before we moved in – and the decorators came in and painted – but somehow in translation the yellow had changed into a rather sour lemon if you can imagine that. Zingy rather than gentle. So I got to thinking that maybe this was my chance to tone it down a bit and bring a bit more calm to the room – every little helps. And knowing that even tidying the bedrooms can be an upheaval for the girls I was going to be causing an emotional earthquake by changing the bed, so why not slip in some new paint at the same time rather than creating another earthquake later on in the year? So far T seems to be mostly accepting the changes, and is coping relatively well.

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So I rummaged in the garage to see what we had enough of and found a dark creamy colour for interior walls and a small rather unreliable paint roller and tray and the painting has begun – 2 walls done, 2 to go! Feeling a bit like supermum! (that won’t last, I’ll be utterly exhausted when I finish it and the adrenaline rush subsides!)

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And that completes the first week of term. Kids were fed, hugged, played with and prayed with. Schools were attended, homework has been done (though still more to tackle), instruments have been heard, and swimming lessons, brownies, youth group were remembered on the right days – and chocolate was eaten! Hoping next week is a bit more run of the mill to be honest, but they rarely are!

 

 

 

 

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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.

 

THE goodnight prayer!

We have always tried to pray with our 3 before bed, right from the beginning, and have gradually encouraged them to join in and pray out loud too. Quite early on we discovered the need for a definite ending prayer that would unequivocally signal the end of prayer and the need to settle down to sleep. And so it came about that THE goodnight prayer came into being, a rather jumbled paraphrase of the blessing in Numbers… the first time we used it was from memory and from then on it has had to be the same!

“‘“The Lord bless you
    and keep you;
 the Lord make his face shine on you
    and be gracious to you;
 the Lord turn his face toward you
    and give you peace.”’

(Numbers 6:24-26 NIV)

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“The Lord bless you and keep you, the Lord make his face to shine upon you, lift up the light of his countenance upon you, and give you His peace” – our rather imperfect version!

We found that when she was young B developed an elaborate set way of praying which did not change in structure, though over the years new names have been added in. It ended in her own unique way ‘… look after the whole world, the whole universe and you God. Amen. Now the goodnight prayer Mummy/Daddy…’

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Similarly with A prayer took on a structured pattern early on. The pattern has changed, and has been shaped by trying new ways of praying, and new questions to ask as we pray together. Most recently it has been influenced by the Ignation Examen idea of reflecting on the blessings of the day and recognizing God’s presence throughout the day.

With T we have she hasn’t easily adopted the goodnight prayer we use with the other 2. In fact on the whole she is rather resistant to praying before sleep! There are plenty of other times in the day when this isn’t the case so it’s not felt like a panic, but there is something significant, important about praying over them just before sleep, handing them over to God’s care while they rest. Also bedtime is the time for anxieties and stresses to get in the way of rest – prayer is vital, and I would love it if we found a way to help her to join in.

‘I can lie down and sleep soundly because you, Lord, will keep me safe.’

(Psalm 4:8 CEV)

We had a difficult time getting T to sleep again last night. There were real and paralyzing worries about dying and never seeing Panda & Pandy again, or me dying or of me left behind if she dies. We needed to pray out loud together and find the peace and reassurance God can give. And it suddenly came to me (I’m sure because we had spent the weekend with my Mum, and it had stirred in my subconscious) that she would relate to the goodnight prayer of my childhood, that my Mum or Dad would sing to me, or with me before sleep. She loves songs – it’s how she naturally talks to God such a lot of the time. So I asked if I could sing the goodnight prayer I always had at bedtime when I was little, when I was upset or scared. She agreed! So then I had to sing – it came flooding back as clear as if I was a child again, as I held her and prayed over her for God’s peace and protection. She liked it so much I think I sang it through about ten times! We may have found her goodnight prayer!

Lord keep me safe this night,

secure from all my fears.

May angels guard me as I sleep

till morning light appears.

How do you pray at bedtime? Is there a special goodnight prayer you use?

Review: Comfort in the Darkness

Rachel Turner’s book ‘Comfort in the Darkness’ is a series of devotional bible stories of people connecting with God, encountering him, in the night. Each is written as a narrative perfect for reading aloud, short enough for tiny attention spans and tired minds, and long enough to intrigue and invite.

I have read with T (6 yrs) & with B (15yrs), and both have enjoyed them and have engaged with the stories in different ways. They have prompted questions sometimes, discussion and sharing our own experiences of sensing God’s closeness.

“If your child asks a tough question that you can’t answer, feel free to say, ‘I don’t know. let’s find out together.’ … Enjoy your child’s curiosity about the things of God. It is one of the great and wonderful privileges we have – wading into the tough questions with our children, with no fear.” (p49)

B has been open to using the prayer after the stories. With T, I have been able to let our chat lead into moments of asking God to draw close, and a couple of times led to windows of quiet waiting together in God’s presence.

After each story are suggestions for discussion starters, and also prompts to help you enable your child to draw close to God. There are ‘parenting for faith’ sections at the end of each chapter too, with helpful reflections on the issues arising in the story, or practical ideas.

I am sure we will read through these many times in the years to come, and I think the reflections, suggestions and resources built into the book for me as a parent coming alongside my child as they grow in faith will mean that each time we come back we will listen and engage in a new way. I can imagine that each time we read we will build on knowledge and skills, and experiences of God from the previous time.

“We can model our trust in God’s ability to be present in dreams. We can help our children to understand that there are no limits to where God can go … Invite God to be part of their dreams…” (p96)

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I was particularly struck by this paragraph in the first story when I was reading aloud:

“The word of God can make all things happen, and with a few words he began his great creation. ‘Let there be light,’ God said. …

But God made a choice. He kept darkness, too. He saved it and protected it. He could have got rid of it altogether, but there was something about darkness that was important and special … He called the light ‘day’ and the dark he called ‘night’. He had great plans for both.” (p12)

I have become so used to night being associated with worry and stress, sleeplessness and the pressure to sleep that it has become quite a negative word I suppose. But here was an invitation to recollect that God treasures the night as much as he treasures the day. To see that God had plans for the night – and as we continued to read bedtime after bedtime it was clear that so many of the times God provided, rescued, guided, challenged and encouraged happened in the night.

Night as a set aside, retreat time with God is not the way I have been thinking of bedtimes, and has certainly not been the message I have been modelling to my children. So I have been challenged – in a good way, and feel I have been given some tools and pointers to change my thinking and my expectations about night! That has to be a good thing!

Isn’t it a wonderful thing that God wants to chat with us, and draw near to us … even (or perhaps especially) in the rather challenging nights (that don’t exactly feel retreat like) when it seems none of us can get much rest or peace. With ASD, anxiety, night terrors, bad backs, eczema and long term sleep deprivation nights are anything but sleep-filled in our house – but maybe they have been God-filled all along, I just needed a nudge to begin to see that more clearly.

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circus skills

Well it’s been quite a week. School holidays have fallen before Easter week so we have been juggling, simultaneously trying to help everyone get some ‘rest’, finish the preparation for the Easter events at church (Andrew has still been at work this week), get the house ready enough for visitors and gently tackle the inevitable mound of homework and negotiating all this around the general life of the vicarage.

Rest

Rest has looked like less pressured mornings, some TV & breakfasts in bed quickly organised and fetched for others (which has meant a bit longer dozing for me), less rushing and urging to get dressed by a certain time; the usual bedtime routines but actually as we’ve got nearer the end of the week we have even had a couple of nights where everyone has been asleep between 1 & 6am!!

20170403_161544Extended imaginary play , left out to come back to again and again, spilling out of bedrooms downstairs & out into the garden.

A family outing with picnic, and ice-creams! (and spotting deer!)

The garden – a new flower bed is underway and I have had a little more time than usual… and of course have also had ‘little helpers’!

Time to get lost in Sims, Minecraft, the latest TV shows of choice, some good books, music.

Facilitating rest for everyone has also meant feeling like a Ringmaster holding back lions in one hand and horse whispering with the other whilst cheering on the clowns and keeping a keen eye on tightrope walkers.

Preparation & work

This has been a balancing act as always.

It has meant sometimes trying to mute the noisy play or lead it out into the garden whilst meetings happen – inevitably it seems to be the one moment no-one wants to watch something, or run madly in the garden, or bounce on the trampoline. And I end up feeling like a Band master with a very unruly set of musicians each with their own music and very prone to falling out with each other and with me – loudly!

It has also looked like sitting in the sunny kitchen with a cuppa making salt dough crosses with T (a horse whispering move and also a job on my to do list) and breathing, and chatting with neighbours who popped over and joined in.

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It has looked like laughing with B as we found space to paint some over sized palm leaves that Andrew needs for the Palm Sunday service tomorrow – and relief that we got them done in time between us.

It has meant typing away late at night, sitting in the dark waiting for B to get to sleep. trying to piece together the thoughts and plans that have come to me or been consolidated in my mind during the day in the bustle and noise.

It has also looked like this plaintive note that I found on my desk this morning after I had tried to grab some work time while everyone seemed settled for a minute:

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So it also looked like slightly reluctant, anxious about my prep, guilt ridden playing with the sand pit this afternoon, and finding lots of amazing creepy crawlies to observe, including massive worms, and a beetle stuck on its back, and things with so many legs (and so fast) we couldn’t count them all.

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House & Homework 

Some of this is easy enough, and my shadows this week have been happy and able to help with some. Washing has been tackled, and in some ways is easier with good weather – hanging out on the line is something T loves to help with at the moment.

Cleaning bathrooms though has been interesting. Standing on a chair cleaning around the blind explaining over and over to a more and more frustrated T why the chemical cleaners I’m using to prevent mold are things she can’t use, which means she can’t help, and how she couldn’t reach where it needs to go. Conversations like that quickly become 2016-05-04 09.32.38an intense cycle that it is very hard to get out of without meltdown, she gets locked in, focused on the one thing she is desperate to do. So it became a bit like practicing difficult acrobatics whilst being a lawyer defending myself, and at the same time being thrown at, pulled at, tugged at and poked.

Tidying T’s bedroom enough to be safe has had to be stealthily and silently attempted once she’s been asleep, little by little, carefully choosing which items I suspect ‘can’t be touched’ or moved that are still placed in the game, and those that appear to have been dropped or thrown out to find the next precious thing to be placed in the game – those I can put away! The silent mime artist.

Some homework has been done. Still more to go, and I’m on the wire keeping the balance between the desperate need for rest and the anxiety avalanche that will come if it all needs tackling under time pressure nearer the end of the holiday.

It feels as though I didn’t succeed in much today, other than being the grumpy stressed out baddie in the panto (will have to change the metaphor here, I don’t know who would have that role in the circus ring!). Despite the week’s restful opportunities it’s been so tiring and full on, and I have found it difficult to find that today was another day of clingy-ness and angst when it really did also need to be a day to tick some things off the to-do list…

However, T’s maths challenge for the hols (an Easter code cracking hunt) was craftily supported seamlessly as I moved around the house cleaning out guinea pigs, getting them out for some fresh air, and getting them back in to a freshly cleaned hutch… I don’t think T even noticed me achieving both – the illusionist! – so maybe it wasn’t all bad today, maybe when I’ve had some space to slow the pace and process all of the day I’ll see more was done than it feels like. And perhaps the things that didn’t get done that were on my list weren’t as important as the things we did instead? which leaves me (at ten to midnight, having just said goodnight, finally, to B) also wondering what God may have been nudging me to notice or learn about today that my frustrations and anxieties were getting in the way of.

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