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.


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!


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.


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!!



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 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.


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:


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.


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.



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!)



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.



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!).


…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.


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!



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…


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.

2016-06-03 10.11.10

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.

2016-06-22 13.39.55


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!!!


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)

2016-06-23 19.51.53

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


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.


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…


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!


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… (

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).


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…


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…