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!

 

 

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preparing for visitors

Ok, so Christmas is a busy time… extra services, extra fancy food, extra special activities and for us extra people coming to stay over the holidays.

There are a few things I have learnt the hard way over the years about helping my children through all the change that having visitors brings so as I’m thinking through all the behind the scenes tasks I have yet to do I thought I’d share them in case they’ll be useful to any of you…

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creating space

With a houseful one of the hard things is children losing that sense that they have a space that’s theirs, to escape to, to be calm in. So we work hard at creating and articulating for them some space they can call their own. It’s usually bed space, but it is more than that physical space that’s needed. Visitors sleep in A & T’s room, and they come into ours on camp beds, so we work together to make sure that all the books/soft toys/lights/clocks that are essential to that feeling of safety and ‘my space’ get moved too and each of them gets somewhere to put them, and lay them out how they are comfortable. For B, who has cousins sleeping in her room with her, we encourage her to do the same, taking all the essential things up into her high bed (which does make it a bit crowded – or should I say more crowded than usual, she is a nester!) and keep that space just for her.

Having a designated, easily visible space they can go to is so important to enable them to regulate their emotions during the time visitors are with us, and to give them a place to go to when they are reaching their limits of sensory input. If they don’t think to take fiddle/sensory toys to that space then we take them there anyway, they are usually needed.

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But that’s mine!

The other half of the story about space of course is that each of my children has to loan their bedroom to visitors for the time they are here. Right from the start we have strongly encouraged sharing, but it soon became clear that the concept needed to be broken down into clear, manageable steps… so from the time B started school we had developed a ritual of sitting her down and discussing which things were too special to share – we put limits on just how many of these there could be! – and these were then put carefully in a box or bag and put right away while the guest was with us. We did the same before friends came for tea even… just knowing that those special things didn’t need to be shared took some anxiety away about how they might be touched, played with differently, broken etc.

The discussion also involved the negotiating of an agreement that the things left were ok to share, we were expecting the children visiting to be able to touch them, play with them, look in the books and so on, and that we expected B not to be cross when they did. We spelled out that we would be supervising too, to make sure things didn’t get broken, and if they did we would try to mend them, but that it was ok to let visitors play with our toys.

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We try to have fun thinking together about what each visitor might enjoy while they are with us… which books could we choose & put next to their bed for them to read at bedtime? Do they usually bring a cuddly toy for bed? If not, is there one maybe that we could tuck into their bed for them to find when they arrive and cuddle each bedtime they stay for? When they wake up in the morning what do we think they would enjoy playing with before breakfast? could we make sure those kinds of toys/activities are easy to find on the shelf? And what about creating some lovely play spaces downstairs together to use during the day? And to think together about a box of crafts or activities that could be dipped into for ideas during the visit. Yes, doing it together does make everything take longer! But I’ve found the detailed, methodical collaboration pays off in the way it reduces anxieties and helps to visualize the activities of the days ahead.

that’s theirs this week

I find it helpful to say out loud that the room we let guests sleep in is their space while they are with us. We need to ask before going in, and we need to not go into their cases or bags looking for things.

We had a ‘funny with hindsight’ moment when B was only a toddler. We were hosting as part of a pastor’s exchange, and our guests had just arrived, and were having lunch. B never stayed at a meal table back then, and so she was toddling and playing. About half way through lunch we noticed how quiet it was… oh yes B had taught herself a new skill and had discovered zips on a rucksack! All our guests camera film was on the floor, and B was happily focused on the lovely film that could be pulled slowly or fast out of the containers!!!

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when and what next?

Yes my children need to know when visitors are arriving and when they are leaving, and they really do feel far less anxious when there is a plan for what we will do each day when visitors are with us.

Sometimes we can get away with working out a list of possible activities and explaining that we will do those things over a number of days but we will work out the order with our guests, or perhaps depending what the weather is like each day. There are usually many fixed points during a visit though too, that we write in the plan and then stick to. Over the years we have learnt together that time between definite activities (or even whole mornings without ‘a plan’) is manageable when we have carefully gone through the processes of preparing play spaces, craft box etc in advance. Somehow it gives boundaries and confidence to a ‘gap’ on the timetable.

We also find it makes things easier when we plan the meals and go through it with the children in advance too. And extra special foods for Christmas always have an alternative that is familiar. We have also found that it helps to say in advance where my children can sit for the meals – especially if there will be a kids table and an adult’s table.

I have prepared a social story about our Christmas dinner – because its a flash point! (see here    – I have left as a word document so it can be easily adapted)

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Well, I’m still expecting there to be ‘moments’ while visitors are with us… but at least when I try to do these things I feel more prepared, and feel I have prepared them as best I can!

 

a day of play

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Some of the cousins are here for a few days, so I have set myself the challenge of documenting a whole day of play. At breakfast we discussed that we had no ‘big plan’ for the day, no pressure to be anywhere at any particular time, and no visitors planned. So the day was for them to ‘potter’ – code in our household for (supported) choosing from all the toys, games, garden, crafts, baking that are available here at home all the time.

I say supported because as you can probably guess these kinds of days are not without their challenges! and although there is less pressure for Andrew & I because we are not putting demands on them, they have the potential to be very demanding in enabling negotiations, transitions, health & safety thinking, choosing together, compromise… all those wonderful skills we want to equip our children with and give them plenty of chances to practice. But its not a comfort zone day overall – and I’m already planning movie & popcorn calming down time for later – parent led!

early morning:

There were no alarm clocks to wake us this morning… no need! A & L were up by 6!! Minecraft animations were put together by A, and Z joined in when he was up at 7. L read in bed. T had come into our bed in the night, but she was awake early and opted to watch some TV with D till breakfast. B was the last (except me!!) awake, but brought T & D down for breakfast – she’s great with them.

stop for breakfast!

After breakfast everyone was washed & dressed – quite a lengthy process.

morning:

It was a packed morning, with lots of separate activities going on in different parts of the house and garden. Animal figures & playmat, playing shops, being detectives, lego, monopoly, minecraft animation, minecraft mini-games, wii, craft, trampoline, running races, visiting chickens and collecting eggs, reading, and gardening!

“We are never more fully alive, more completely ourselves, or more deeply engrossed in anything, than when we are at play.”
C E Schaefer

Some help was needed in the transitions between activities, and the getting going of games. There was a need for some negotiation during monopoly when there were disagreements. B didn’t stay and finish the game, but enjoyed going out & helping Andrew continue clearing a corner of the garden where we hope to store logs. She excitedly came to show me this spade they had uncovered! Not the first gardening tools we have found hidden in undergrowth…

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D & T needed encouragement and instructions when they visited the chickens and collected eggs but they had a lovely time together. Most of the play happened in self-selecting small groups, mostly A, L & Z and D with T. Pretty much dividing themselves by age group. And with B outside with Andrew, she didn’t naturally join a  group when she did come in, and ended up very happily crafting in the kitchen while Andrew cooked soup for lunch.

We don’t stop playing because we grow old; we grow old because we stop playing. George Bernard Shaw

stop for lunch!

afternoon:

The afternoon began in fits and starts, a quick return to lego for D & T that quickly became D joining Z on a wii game & T feeling left out. Very quickly solved by a suggestion of showing L her barbies and barbie stable which B briefly helped set up before heading out with Andrew. It wasn’t long lived, L went back to learning minecraft animation with A and T brought DS games downstairs in the same room as the wii game – not sure her backseat driving was appreciated all the time!

Colouring and drawing was my suggestion to smooth the transition off screens! In fact the animal figures came out again and a train track was built to bring people on safari! Much better idea!

The older group was a definite group again by later afternoon. They enjoyed the garden again together, playing made up games on the trampoline.

One thing that you need to understand is how important PLAY is for the thinking, language, emotional, problem solving and creative skills development of children with autism. So many people underestimate the importance of PLAY… (http://www.connecttherapy.com/blog/therapy-strategies/importance-of-play-in-children-with-autism/)

When they came in again they each found their own quiet spot, L & A both reading, Z setting up a lego game, and colouring with me. By then D & T were upstairs cleaning barbie ponies in the bathroom! Which of course was great fun, and of course needed a little input from me to keep it manageable. Almost as soon as that was begun it was over, but the floor of the sitting room had been tidied just in time, and I had got out a few games thinking ideas might be helpful as we got more tired and nearer to tea. As I began to prepare for tea it was definitely noisy silly time again, with much racing around, lots of play dialogue in loud voices (& of course some set to music by T, she seems to often sing her dialogues or inner thoughts as she plays).

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stop for tea!

Good, and hilarious game of I spy altogether as we ate – a good distraction for some.

movie time!

Lots of laughter, and time to unwind…

bedtimes:

Stories – and the good thing about children staying with us is of course I get to read lots more! – prayers – tucking in… and then (eventually) all to sleep…

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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

 

 

Community

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Right from the beginning of our parenting adventure we have spent at least a week a year in intense Christian community. When we were first married we were leaders of Christian holiday weeks for children from disadvantaged backgrounds run by CPAS, so B & A both had to get used to being around a close knit team and a busy week with outings, meeting new people & noise. Don’t get me wrong, they weren’t plain sailing as parents! We often brought someone with us especially to accompany our own kids, but even so there were a fair number of difficult & tense moments most days! There were good things that came from those weeks too, I am still thankful for people from the team who have been people that they both B & A have looked up to, and learnt so much from being around; whose faith and courage have continued to inspire and shape us as a family. 

When B & A got closer to the age of the children who joined us for our holiday week it became much more difficult an environment, and so by the time T was born we had reluctantly (yet with relief too) stopped leading the camps and so we started going to one of the large Christian festivals, New New Wine with a few families from church. Now we are still going, and the number of people who we share the week with has grown – some from our curacy church, some from our previous church, some from where we are now & friends of our friends.

We camp in family groups, and lots of those family units extend to include others coming either for the first time, or coming alone, or in need of a little support in some way. In these extended family groups we organise our cooking & washing-up, eat together, share the week closely together. Watching out for each other, being there for each other and including each other. As much as we can we camp around a patch of communal space, where we can spend time as a whole group too, having fun, discussions, learning about and from each other.

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During the week we also help our children become part of a small group within one of the age group venues. For us over the years this has been very difficult, struggling with overwhelming anxieties, sensory overload and then the exhaustion that these bring. But in recent years we have become part of the Our Place community at New Wine – a team of volunteers ready to help support integration & inclusion in the different groups, and running a venue especially for children & young people & their carers which has proved to be a place of escape when needed & a community that ‘get it’ and realise just how big the struggles can be taking part in a week like New Wine as a family with additional needs. There we have found sofas, gentle sensory calm down spaces, homemade cake, listening ears, people to pray with, someone ready & willing to do washing in those inevitable emergencies, time and space to process and reflect with each other & God, tissues, hugs, pampering & tlc. Our Place has made it possible for us to keep coming & all keep growing & being challenged in our faith and living. They are a really special team!

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Why do it, if it’s so difficult? It would, no doubt be much easier to take the decision that it’s just too far outside what is remotely comfortable and practical for us as a family. I guess these experiences have been so important to us, important enough to tackle the problems for. It has mattered to us such a lot over the years we have been parenting that our children have not just learnt about living a life of faith from us. We want them to have had as many opportunities as possible as they grow up to have spent time with other Christians, heard others teach about faith, watched others living their faith, heard of what God is doing around the country and the world (this year B & A came back to the tent one evening telling us all about having had the opportunity to speak to a pastor in Iraq by live video link, it had made such an impact).

More than that too, it is right at the heart of faith to be drawn into community – drawn into the community of the Father, the Son and the Holy Spirit firstly and into the community of God’s people. Made in God’s image we are made to be in community; thriving and growing best in community; interdependent. The fact that so much about that is so very tiring and challenging for us as a family is even more reason to be intentional – to put ourselves in places where we really have to practice; to practice giving and accepting help; to practice sharing what we have so we each have what we need; to practice listening, watching and learning from others; to practice using our gifts; to nurture compassion and love as we practice recognising each person as made in the image of God; to nurture that ongoing growth of the fruit of the Spirit in our lives. Yes it’s not always easy, but it is so important. I’m so thankful for those who join our extended family and bear with us in the challenging bits of these weeks each year, and those who camp around us and share the week with us, and for the really wonderful volunteers of Our Place. We come away stronger and that little bit more whole! (Ready to face the next challenge – which for us meant putting up the tent again in the campsite for our family holiday – we are in so much need of practice at community that a bunch of roses was bought as a peace offering once the tent was up!! )

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