friends

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“She can’t be autistic, she has friends”…. (anon)

I must have heard this a hundred times! The truth is autistic people do have friends, want friendship and really value their friends. It’s also true that some of what makes up being a good friend and enjoying & understanding a friendship doesn’t come easily – in a sense that’s not different than it is for anyone, but the things that are difficult if you are autistic are there in every element of friendship everyday so it can get a bit complicated, exhausting and overwhelming at times it seems to me.

‘Once you have made friends, you have to work on your friendship. This is because you’re only going to benefit from a friendship .. if you continue to be friends with that person. Therefore, you need to use some friendship maintenance skills to keep the friendship going.

An analogy that might be helpful for this is learning to play a musical instrument … once you have mastered a skill such as playing a particular piece of music, you have to practice regularly to keep being  able to play that piece of music so that you maintain the skill in your memory’  (The independent woman’s handbook for super safe living on the autistic spectrum, Robyn Steward. p69)

A lot of the basic maintenance skills are things most people take for granted, most of us don’t remember having to consciously learn them, we are sometimes not even aware of them – they just happen when we are around our friends. Things like reading body language, hearing tone of voice changes, keeping up with the conversation, turn taking in conversation, noticing and understanding other people’s boundaries, likes and dislikes. These are all things that most autistic people have to consciously learn, and because most people aren’t aware how they learnt these skills it can be a very tough job to find someone to teach them!

Ongoing, ordinary friendship relies on these skills. For example, friends respond to each other’s feelings to be quick to comfort, say sorry or to share in their excitement, but people don’t express their feelings clearly and directly very often – more often through tone of voice, and body language alongside behaviour, and of course a reliance on a common understanding of how feelings are expressed in our culture, so there are a lot of different skills needed to be able to ‘see and hear’ a friends feelings in order to be able to be a good friend in response. If these skills have to be consciously learnt (and they’re not an exact science!) then this process takes more time, and is something that can go wrong quite quickly – and then be difficult to unravel and mend.

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Conversation is another ordinary part of friendship. But it is made more difficult if most people in a conversation seem to just know when it’s their turn to join in but to you it seems impossible to work out. The average way of learning turn taking in conversation is by noticing those raised eyebrow moments from parents or aunties when we were very small and just starting out; hearing the clearing of the throat of a grandparent and noticing the intent of it towards you, inferring it’s meaning as a reprimand or warning to wait. If you are autistic your brain just doesn’t learn by inference, and of course we’re also back to the not hearing tone of voice changes, not looking at people’s faces in the same way, not reading body language instinctively. These differences in learning mean that sometimes autistic people can dominate conversations unaware of other’s lack of interest or annoyance which can appear unfeeling or selfish, other autistic people sometimes never join in conversations in a group but wait to speak to just one person at a time which can appear very shy, withdrawn or uninterested.

‘Many people struggle to pick up on subtle social cues such as someone not sounding interested.For people on the autistic spectrum, this could be because you are monotropic (able to concentrate on only one thing at a time). Also, your sensory system may be mono-channel (concentrating on one sense at a time).’

(The independent woman’s handbook for super safe living on the autistic spectrum, Robyn Steward. p71)

It’s also very true that the context of any conversation makes a huge difference to how well these skills can be used even when they have been thought about and learnt. Many people who are autistic also have SPD (sensory processing disorder – or difference) which can mean they are vulnerable to being more quickly overwhelmed and so distracted by the environment around them – hearing all sounds equally rather than filtering out the ones not needed right now for example, or being in pain from the light that doesn’t seem too bright for anyone but you. Dealing with sensory overload (literally an overload of neuro-pathways) is not at all easy to do and still navigate a conversation well.

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One of the other different thing I’m noticing is just how difficult it can be in friendships when you are a very focused thinker. Many autistic people have very specific areas of intense interest which can hold their attention for an age, and at times can dominate their conversations, their choices in play, their imaginary world – at times pretty much everything. This can sometimes be difficult to bring into a friendship group, where other people have other interests and it is cultural for good friends to spend time enjoying and taking an interest in each other’s hobbies or interests. Again, a skill to learn. Sometimes it is even that the friendship itself is the intense interest and then it can get difficult when things change, or when new friends are also included, or when the friend’s boundaries over how often they feel comfortable about getting together don’t match. It can also be difficult in these moment to accept and understand that some people want lots of close friends.

Friendship is something I assume every parent worries over, and prays about for their children. For me it is also something I am constantly trying to dissect and understand better so I can anticipate hazards ahead and get teaching, showing and supporting the use of friendship maintenance skills. Because friends really matter, and we really value them.

it takes a long time to grow an old friend

 

 

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calm woodland corner

Well, schools have finally broken up for the Christmas holidays, and we have our first visitors arriving tomorrow. So in preparation I spent some of today creating a calm corner for the girls (and anyone else of course!) to use when they need some space or need to work at calming down.

We have a little gap behind the sofa in the sitting room. It’s very small but maybe that is in its favour – it’s definitely a ‘one at a time’ kind of space!

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I have made a mobile above the space with paper snowflakes which moves and spins slowly as the air moves in the room. I have collected together some pine cones and wood, some laminated autumn leaves and brought a natural woodland feel right into the corner. T has a mood colour night light hedgehog so he’s moved in too.

Our scottie dog doorstop is soft and happily brings some weight onto a little one’s knees to ground them and bring a sense of safety. And our soft cuddly snowman sits ready for a squeeze.

To make use of the radiator that I can’t move out of the way, I have laminated some clip art woodland animals, and cut out some basic silhouette trees – added some magnets onto the backs and created a quick ‘make your own woodland scene’ which can be fiddled with, can inspire stories and become absorbing. As I cut the shapes out I tried to make sure there were no sharp corners or edges so it’s all smooth to touch.

Next I have made a lap size light box from a small household opaque plastic tub with a lid and some LED lights. I will put some tissue paper shapes and some coloured plastic counters that can be arranged on the lid and played around with enjoying the light.

Then I have collected some fidget toys, puzzles and sensory activities into a basket the other side of some cosy cushions. There are a lot of DIY ideas to try. We liked these…

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  • ‘our best bites’ have instructions for homemade snow globes
  • ‘red ted art’ has printable mesmerizing flextangles
  • ‘Views from a step stool’ has instructions for a Christmas themed sensory bag
  • DIY light box instructions from ‘the imagination tree’.
  • fabric marble maze instructions from Yvonne Reynolds (I’m making mine from felt, and tree shaped for my woodland calm corner).

But we also added a sand timer, a Christmas I spy jar we made last year using rice and little pictures and sequins, a tactile snowflake made from fluffy pipe cleaners and hair bobbles with big beads on, a couple of simple puzzles, a Christmas stencil with pens and a pad of paper for doodling, and a create your own story game that we have.

I like the printables for the calm down kit from ‘the chaos and the clutter’ which give suggestions for how to calm down. If I have time I will put something together on a woodland theme. Maybe ‘curl into a tight ball like a hedgehog’ or ‘take a deep breath like the owl flying’, ‘warm up the snowman with a tight cuddle’ ? Any suggestions welcome! …

 

 

 

 

such a good idea

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It seemed such a good idea – pumpkin carving whilst talking together about how Jesus picks each one of us, cleans out all the yucky bits in our hearts, and fills us up with his light…

Sounded perfect in my head as I had run through it in my mind.

What could go wrong?!

 

Whether we just happened upon the wrong moment, or it was just never going to be a winner I don’t know… but it did not go to plan.

As we cut the lid and looked inside my gentle chatting was drowned out by expressions of disgust.

‘Yuck! It smells!’

 

 

The scraping and cutting out of the flesh inside which I had imagined to be a sensory treat turned instead into something that seemed horrifying to T. So disgusting she didn’t want to join in at all.

I let her have a go at taking pictures for me, but even that got too much and pretty soon instead of us talking together calmly about how Jesus makes us clean on the inside I found myself trying to manage a volatile few minutes as T tried to take pictures of everyone and everything! She finished off by taking yet more incredible selfies, with each face more and more exaggerated. Of course when I had finished and washed my hands, we needed to put the phone down have a look at the pumpkin and decide how to carve it.

Let’s just say, I had to go and hunt for my phone! Then before carving I had to take a walk in the garden and find and cajole T back into the house.

When I finally got her in, she made an escape upstairs and I was left carving (‘cos I have to finish what I’ve started at this point). Hope you appreciate my efforts – I opted for an unusually optimistic slogan, which seemed bold given the circumstances. It will certainly be something to reflect on… and yes I’ve been told, holes in pumpkins ‘aren’t meant to be that big Mummy’ – I’ll do better (if there’s ever a) next time!

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making gifts together

We are just beginning to make our plans and preparations for filling shoeboxes with gifts for children which we collect as a church and send around the world with Operation Christmas child.

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homemade flower crayons

This year I am keen to get B, A & T involved more and have been wondering if there are any gift ideas that would be easy enough for us to make together to put in. There’s something prayerful about spending time making something to bless someone else, and those times we do manage it I find it inevitably changes, and blesses us too.

So here’s a list of ideas I’ve found:

  • T-shirt headbands (‘lovestitched’ have an easy to follow tutorial here)
  • T-shirt neckwarmers (needs sewing) (‘lilblueboo’ have a good tutorial here)
  • no sewing tutu skirt (Simply Real Mums have instructions here), the same method can quickly also make a flowy headband, or wrist band.
  • braided bead bracelets (see beadaholic’s video tutorial here)
  • no sewing fleecy pom pom hat (great instructions here from Creative Jewish Mum)
  • homemade shaped crayons (valentine ones on Mumdot here) These can be any shape you have a silicone mold for of course.
  • dolly peg fairies/dolls – sharpies, lace, tulle, felt, wool and imagination! A quick google for ideas revealed lots and lots to be inspired by.
  • wooden car tracks (BuggyandBuddy share their instructions here for wooden track) I was wondering if the same concept could be done with felt pieces, which would mean corner pieces could be made too.
  • lollipop stick puzzles (Mum Endeavors makes some here)
  • a world in a tin/suitcase – you can buy tiny tin suitcases, or use a little tin or large matchbox. Buy a little soft toy or little play figure that will fit in the tin or box, and then use felt, pretty papers and tape to decorate in the tin. Maybe the box will turn into a bed for the little doll, or maybe you have room in the tin for a whole house, or scene for the play figure.
  • baby tag blanket  – will need sewing (‘wholefully’ has a good tutorial here)
  • stacking game made of cotton reels (Handmade Charlotte has instructions and a printable design for beautiful animal mix n match, look here.)

Well, we’ve made a start at having a go at some of these. It’s a great way to stop and chat together, particularly about what the children who get the shoeboxes will be like, and what they will enjoy playing with or using, and where they might live.

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a rainbow tutu headband

 

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

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

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

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

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

 

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

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

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

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