admin – keeping things going in a family shaped by hidden disability

 

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!

 

 

make do & mend

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For some time now our curtains in the sitting room have been embarrassingly saggy, hanging in a lop-sided and disheveled way. One of those things that has been niggling and annoying but every time we’ve looked at them it’s felt like a huge job so we’ve put off doing anything about it.

Last week though Andrew came home with new curtain poles and reminded me that he’d already made sure we had new curtain tape! So I guess I wasn’t surprised when he woke up this morning ‘eager’ to sort these curtains out on his day off… I on the other hand was rather reluctant!

Its been a long, tiring week. Challenging behaviour, lots of extras to the usual week’s work, Andrew was away at the beginning of the week, and of course there was a dentist appointment thrown in for good measure – there just had to be, it was that kind of week. I woke up simply beyond tired, a fiddly job like sewing new curtain tape onto 2 sets of curtains was probably the last thing I wanted to do!! I did get some rest time this morning after the school run – but then the job began. You know when you are going about things really slowly, stopping and starting, complaining inside, already imagining the absolute worst outcome & already regretting the time and energy I hadn’t yet invested in this make do & mend job…. well that was me…

why am I doing this?

I don’t want to do it right now.

I’m no good at this anyway, it’s going to look awful.

I haven’t got the energy for this today.

The curtain tape will probably run out half way.

Goodness these curtains are so old, I’m not convinced new tape will revive them.

Oh help, here goes with the scissors. Hope I don’t wreck them. I’m bound to make a mess of this.

We didn’t even buy them for this room, one set isn’t even the right size, no wonder they look so tatty.

Why can’t we just buy new ones??

Truth is we could of course have spent a lovely day choosing new curtains. We’d have both enjoyed that together, and we may even have found something that would have looked great in our sitting room (these are fine, but I don’t think either of us look at them with any sense of ‘wow, I love those in here’, they’re functional.), and sometimes for other things we do choose to buy new. But with these curtains we wanted to stick with the make do & mend principle, there’s potentially a lot of life left in them (assuming I didn’t make such a mess of the job in hand that is!). It matters to both of us that we weigh up even seemingly little decisions and get a balance we are content with between buying new and trying to make things last. There’s no escaping the knowledge that what we do with our ‘stuff’, and what we do with the ‘waste’ that we produce as a family has a much bigger impact on the earth, and it’s people than we can get our head around.  I wonder also if those actions and decisions we make about our ‘stuff’ have a bigger impact on our hearts and well-being than we can get our head around either.

The earth is the Lord’s, and everything in it, the world, and all who live in it..

(Ps 24:1 NIV)

Caring for the earth, and the people in it – all loved, cherished & delighted in by God matters to us as a family. And that inevitably means that the little things, the make do & mend curtain jobs matter. But I needed encouragement today, and the accountability of my Andrew to face the job that seemed huge in the midst of tiredness. It was a small thing, an everyday, family life, mundane thing but it reminded me that discipleship is the long haul and often it means pushing through in those inner battles about taking the easier, more comfortable and convenient way.

You’ve all been to the stadium and seen the athletes race. Everyone runs; one wins. Run to win. All good athletes train hard. They do it for a gold medal that tarnishes and fades. You’re after one that’s gold eternally.

(1 Cor 9:25 MSG)

With Andrew’s encouragement and help the job was done… the curtains back up, and yes they do look better, and no I didn’t wreck them, and yes they’ll be great in the sitting room for quite some time to come! So we didn’t need to buy new this time. That’s resources saved, potential waste reduced, and so I trust that’s God’s earth and God’s people impacted for good in some unseen way through our make do & mend curtains. I also trust it’s another small victory in the everyday life of this (very often tired) disciple, a reminder to keep at it and to keep on recognizing that with God all the small things count!

 

Where are the floors??

One of the things about holidays is that you have to keep on (& on, & on!) packing and unpacking ‘stuff’, the clothes to the washing after a break, then washed folded & back to drawers & cupboards; the toys repackaged in order to fir into nooks & crannies in the car then all sorted out again when we get back into their right places and boxes and bags; wires and plugs and batteries continually found and returned; medicines, bathroom things, small bottles of decanted shampoo all having to be packed away again as we near the end of the summer break; tupperware with small amounts of oats or sugar, or small jars of cooking oil to be reunited with their ‘at home’ storage tubs & bottles; camping equipment cleaned and packed, cleaned and put away, borrowed and returned…

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We have just come back from a wonderful weekend staying with friends, so today (after a night of little to no sleep) we are setting to again unpacking, getting the washing machine on, and trying to make sure everything we had with us is going back to where it is meant to be. We have also left such a generous, tidy, organised, peaceful & life-giving home from home that to be honest coming back was a sharp contrast! (and a rather uncomfortable one!)

Truth is, we have a lot of ‘stuff’ between us, and with the nesting/hoarding tendencies of our girls, and the busyness of life (and yes, the low priority I give to housework) our house today feels very full, and much more cluttered than I would like to become content with. It’s not at all a sudden revelation but I guess right now I’m feeling like tackling some of it… we found our bedroom under the piles of washing last night & that feels so much better, today Andrew is putting up shelves in the utility room and I have made a list (I know – it will all end in tears & exhaustion!!!) and am tackling some clearing out of those neglected corners of the house.

Clearing out, sorting and tidying are activities that face a lot of  opposition in this family. It is not simply the expected resistance of kids not willing to join in and help, but rather the stress tidying causes by the change it brings, and the way that it unsettles (for years sometimes… I am still being asked about certain soft toys that have mysteriously left the house, am still being told off & distrusted for persuading them to part with certain, no longer played with toys years ago.).

What I observe in my girls about their ‘stuff’ is an extreme, but it is there to a lesser extent for the rest of us too I’m sure. They seem to feel safe when their things are around them; seeing their things (even if to anyone else it looks like the aftermath to a burglary) and walking through them, having them always available to check, touch, touch base with somehow grounds them and gives them a stronger sense of place and belonging and how they fit into the world around them. It’s true of all their things, and it can make it very hard for them to part with things – even wrappers from things, or receipts, or grown out of clothes- because they are part of the story of who they are and where they are, and have been.

Our ‘stuff’ is something we talk about often in our family life of faith. The challenges of the Bible to hold lightly to earthly treasure and set our hearts on heavenly treasure; to see things as a gift not a right; to give generously and sacrificially not just to give or share what doesn’t matter to us, or what is leftover; the challenge of living fairly in an unjust and unequal world- these challenges are often wrestled with together.

In tears at bedtime… T – ‘When I die can panda come to Jesus’s house too?’,

‘I’m not sure T, what do you think?’

T – ‘If Jesus loves me he knows I need panda’

‘Well that’s true, he loves you so much, and knows exactly what you need. Maybe you won’t need panda quite as much in His house?’

T – ‘(more sobbing) I love panda, I want him to come too. We don’t take our toys do we?’

Sometimes the conversations just come and go. Sometimes Andrew & I challenge things a little for all of us and we try to clear out to reduce the sheer amount of the things we are trying to hold onto. Of course sometimes there are specific challenges, a person in need, or our desire to respond to news reports; the discipline of the seasons of lent and advent to focus our attention & our search for groundedness or security away from things towards friendship with Jesus. I am sure, living in the here and now, our need to be challenged about our need for things will remain, month by month, year by year and Andrew & I will need to keep prayerfully & gently finding ways to help us all embrace those challenges and so find joy and freedom in knowing a little bit more about the depth of security and belonging we have in Jesus.

Tonight I was reading Job’s story to T (it’s considered one of the oldest parts of the written Bible – yes we’re still exploring lots of questions about the Bible!) and we were struck by the repeating motif:

You give and take away, blessed be your name

Job lost all his ‘things’, he even lost family, and the respect and kindness of friends.

And through it he recognised

God as the giver,

God as the source,

God as the one who sustains

and the one in whose presence & care our lives find their meaning.

‘Job was so brave wasn’t he, he kept on trusting God. What would you say to God if you were Job?’

T -‘God, I need you to give me everything I need!’

all you need

 

 

All new…

It’s May! Not quite sure how it’s happened but all of a sudden here we are! Our bank holiday weekend was bustling with games, family and food. A really precious time together a chance to think, take stock, laugh, share, and – on this occasion – dodge the rain showers.

2016-05-04 09.32.38After a long weekend going back to school, and groups yesterday felt like another mini fresh start with all that brings… the excitement mingled with dread and anxiety over the transition from one thing to the next, and the tiredness that brings with it. No-one wanted to get up this morning!

But as I have got back from school drop off, the sky is blue, and the sun is shining, washing has been hung on the line and the dishwasher is on again… and so I am immersed in things that speak to me of newness and fresh starts, of being cleaned ready for another new beginning.

As I hung out the washing I was thinking about how many new starts there are in a life of faith; our following Jesus is an adventure marked by stepping out and stepping up; punctuated with steps forward and 10 steps back – and then the picking up, dusting down and taking another step forward as if for the first time with Jesus. The work of the Holy Spirit is a work of ‘being made new’, ‘from glory to glory’, a ‘now & still more to come’kind of work within and through us.

2 Cor 318 the message

love this verse so no apologies for having used it before in another post!

Truth is though, transitions aren’t the easiest things in the world to navigate with ASD! Which is tough, because there are so many, and the pace of them is relentless… and it seems there are going to be just as many in a life of faith, as we grow into the likeness of Jesus. There is the difficulty of things left behind in order to embrace what we have grown into (even clothes that don’t fit at all are a struggle to part with in exchange for the new, and new clothes take a lot (months sometimes) of adjusting to before they become part of life). I see a similar difficulty in our growth in faith, letting go of old ways of thinking that don’t fit us and exchanging them for God’s perspective – the perfect fit; or like habits, from character defining ones, to the mundane like moving onto the next age group of Bible notes! These moments of letting go and embracing, natural to growing in faith, are tricky.

There’s also the fear that comes with transitions, with a difficulty visualizing and anticipating what ‘could’ be, anything new is very starkly an unknown even when it builds on a pattern or an experience that has come before. In day to day life we try to support this fear, perhaps through the use of social stories to map out with our girls what this new thing or new way of doing things will look and feel like, how they will be able to interact within this new setting or situation, what they might say, what they might feel. Sometimes simply with visual prompts that break down the transition into smaller more manageable steps, this can work is there are small changes to something familiar. The best way is when we do it together, so we are there to provide the continuity needed to face the fears; so that we are able to whisper encouragements and explanations, able to remind and prompt; so that we are on hand to notice when it’s becoming overwhelming and there needs to be a rest & some space. Of course we’d love it if this could be the support we could offer for every transition… but of course it’s not always possible (and also of course we want our kids to gain more independent skills to cope with transitions for the times we can’t hand hold so sometimes we do step back and hover).

But it occurs to me that in our growing in faith, in all the transitions that this will mean, we have a promise of this kind of support – without limitations!

 Cry for help and you’ll find it’s grace and more grace. The moment he hears, he’ll answer. Just as the Master kept you alive during the hard times, he’ll keep your teacher alive and present among you. Your teacher will be right there, local and on the job, urging you on whenever you wander left or right: “This is the right road. Walk down this road.” (Isaiah 30:21 MSG)

Jesus, undeterred, went right ahead and gave his charge: “God authorized and commanded me to commission you: Go out and train everyone you meet, far and near, in this way of life, marking them by baptism in the threefold name: Father, Son, and Holy Spirit. Then instruct them in the practice of all I have commanded you. I’ll be with you as you do this, day after day after day, right up to the end of the age.” (Mt 28, 19-20 MSG)

But the Helper (Comforter, Advocate, Intercessor—Counselor, Strengthener, Standby), the Holy Spirit, whom the Father will send in My name [in My place, to represent Me and act on My behalf], He will teach you all things. And He will help you remember everything that I have told you. (Jn 14:26 AMP)

We were dipping into ‘The servant Queen and the King she serves’ and talking about how we might share this story of the Queen’s faith with our friends and neighbours over the weekend. My sister read out this wonderful quote which she had slipped to her Dad, King George VI as he went to speak to the nation:

Minnie Haskins’ poem “The Gate of the Year” (1908) :

I said to the man who stood at the Gate of the Year,
‘Give me a light that I may tread safely into the unknown.’
And he replied, ‘Go out into the darkness, and put your hand into the Hand of God. That shall be better than light, and safer than a known way.’

It is this that I need to show and model to my children, the truth and certainty of the Good Shepherd knowing the best pastures and the places of rest; the Light of the World for whom night and day are just the same; the Way the Truth and the Life the one who by the way he lived and loved, died and rose again is himself the ultimate social story; the ever present comforter who continues to lovingly pick us up and dust us down and set our feet on the right path and whisper the words we need – and the courageous trust we can put in God for every transition, for all our growth, for every challenge.

 

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