Neurospicy Summer

Summer has arrived!

I love the cheerfulness of sunshine-y weather, and I love being able to be outside more and to let Little Peggy wander freely through the house and garden without having to pile coats on or worry about wet feet. I LOVE being able to hang the washing out to dry on the line more often (or having it dry without being rained on thrice first...). Summer feels light, airy, cheery and free, at least when it's not oppressive and deathly like last year's 40°c heatwave...

I'm sure you sense a "but" coming.

Is it the "but" of "incessantly hydrating and applying suncream to toddlers is a pain, even when they're compliant"? Or the "but" of making sure you don't kill the plants (all two of them) by forgetting to water them? No, I'm sure everybody has their own minor inconveniences of summer, just as with every season, but you don't need me to tell you about those.

I don't want to be negative about summer or about being neurodivergent, but at the risk of sounding like a whinge-er I want to talk about a few considerations that feature more particularly in a neurodivergent life and might not seem an issue to others. Some are from my own experience and others are observed, mostly from my neurospicy work life. Perhaps they seem minor or strange to you or perhaps you think, "well that's annoying for everyone." Maybe so, but if someone in your life has seemed out of sorts this week it could perhaps be that they are dealing with some of this or similar, on top of whatever else life is throwing at them right now, and the struggle is genuine.

Suncream

Gotta start with that one! Suncream can be a sensory nightmare for any child (or adult) but even more so someone with sensory processing differences. I remember screaming blue murder at my Mum as a child "you're pulling my arms off!" 

The smell, for one - love it or hate it, we all know the distinctive smell of summer. But if you're a child you probably don't get to choose it, you can't get away from it once it's on you and you're stuck with that extra, possibly distressing, sensory input all day. And then consider arriving at school to find that there are six different brands of suncream that your classmates are all wearing: six different smells to constantly filter through the brain's processing departments.

And next there's the texture - sticky sticky sticky! You stick to yourself, and stuff (like sand) sticks to you. Also everyone looks shiny all of a sudden... Personally I can tolerate suncream although I do hate the texture of it. I buy the spray on creams now I'm an adult, because they leave me less sticky, and I apply sparingly only in the places that really need it. Adults in childcare settings tend to slather on liberally. It's much quicker. And you know they're safe from the sun. But maybe think twice - perhaps you could improve a child's day by applying carefully.

And finally, let's not discount the effect on routines and expectations: suncream adds an extra (and unexpected, for a while) step to the routine of going outside or getting ready in the morning. This could be a real problem for some people.

Routines

While we're on the topic of routines, these can change with the weather too - often we go outside earlier in the day to avoid the worst of the heat. This means other things move around and we don't know what to expect from day to day. "Yesterday we went straight outside when we got to school, I can't wait for today." But then today we don't. Or, "We've gone outside before our usual morning activity. When will we do that activity? What if we don't do it at all?".

We may also need to schedule in extra drinks, especially as recognising thirst (interoception) can be tricky for neurodivergent types. Washing routines may change and any other routine you can think of really! 

Clothing

Hats... some love 'em, some hate 'em. Some, like Little Peggy, can be adamant one way or the other depending on mood.

I have enough of a problem swapping from winter to summer coat (and then to none), but there's more to the summer adjustment than this.

They are awesome shorts
from a wonderful friend.
And now they say neenaw
instead of brrm!

In our house we've also had to work hard on the transition to short sleeves. Little Peggy is not so keen on them. Even before the hot weather he wouldn't tolerate having sleeves rolled up for water or messy play. If his trouser leg or sleeve (or mine!) got pushed up he would pull it down or say "oh no" to ask me to. I remember getting shorts out a few weeks ago to see whether we had any in his size. I knew about the short sleeves/trousers issue. I pulled out a pair of shorts with cars on and he was so excited: "brrm brrm!" He wanted to put them on. First they went over his trousers, then I persuaded him to take the trousers off so I could see if they fit properly. I thought I'd done it. Then he insisted on putting the trousers over the top. Even the joy of the car trousers was not enough to get his legs out, so he wore two pairs of trousers that day!

I'm all for people making their own choices but I also need to protect him from overheating now that it is hot hot. Luckily it is now already hot in the morning and we've worked out that it seems better if we put shorts and t-shirt on straight away and long sleeves are not seen. He still usually tries to pull his sleeves down but I think he's getting used to it - there is less "oh no"ing. We've only managed to be sock free one day so far!

And of course in all of this I have great sympathy with him, because I hate it too. I like the sensation of chosen textures (usually 95% cotton 5% elastane!) against my skin. I do NOT like the texture of skin against my skin. ESPECIALLY when it is warm and sticky. I wrote before about trying to get round this issue when breastfeeding. As a child I didn't like skirts or dresses. For many reasons, but one of them being that your legs stick together, at least in summer ones when you don't wear tights or leggings underneath. A big hoody makes me feel cosy and safe. Having the air on my skin is not as bad as touching skin but still feels uncomfortable. Maybe it's partly the weight from the clothing that I like too, adding proprioceptive input to the tactile sensation.

And neurodivergence doesn't just mean autism although I write a lot about that. Mental ill health also comes under the banner (as do many spices that aren't in my personal neurocupboard - ADHD, dyspraxia and many more) and can add further difficulties to the summer experience. In the past I have worn long sleeves to cover self harm in contexts where I felt I needed to. Eating disorders often come with body image issues or body dysmorphia and people may feel uncomfortable in clothing that does not cover their body or shape. People with certain types of trauma may also wish to hide their body. OCD may be triggered by a whole host of summer-related factors.

Temperature 

This one is so obvious that I nearly forgot it! Some people's bodies are particularly sensitive to changes in temperature, and this can also be a sensory issue for autistic people. Simply being hot is distressing or overloading. 

Interoception problems can play into clothing problems meaning that people don't register when they are too hot and can even become ill from overheating or dehydrating without realising.

Sweat

Tied in with temperature, the sensations of sweating can also be problematic if clothing becomes wet (NOT OKAY!!), skin feels different (don't even think about drippy sweat!!) or the body smells different. The need to wash more could be difficult for sensory reasons or because of a change to routine.

Sunshine/light

The sun is bright! Which is lovely. And at the same time it can lead to sensory overload. I love sunny weather but I struggle with too much brightness, and I'm not even someone who gets migraines! It took me ages to realise why I would feel so overwhelmed and exhausted after visiting my family in the post-covid restriction era. I thought it was because I had become unused to spending time there, but eventually I realised it was because I was sitting in the conservatory all day (to minimise contamination). I had brightness all day and I was overloading me. I started wearing my sunglasses for some of the time and it was better. But I also don't really like wearing sunglasses because they change the colours of the world and make it less vibrant and beautiful (to me, anyway). So it's swings and roundabouts! For some people the sensation of sunglasses on their face will also be too overloading so that's an issue to consider as well.

Fans

Visually whizzy, noisy ear-fillers, and disturbing air-movers! Actually, some autistic people really LOVE fans and find them very stimmy. Some love them but find them overstimulating. I find that the sensations (air blowing on me and sound especially) fill my brain, which I can cope with if I'm doing OK but is too much if I'm already a little overdone.

Food

When the weather warms up people suddenly start doing strange things like eating cold food for tea (dinner/evening meal, whatever your preferred terminology!) and eating outside! "Ooh it's too hot to eat much this afternoon we'll just have a light lunch" (what if I'm ravenous?!). These things often happen at short notice too, which is even more difficult for NDs to cope with. Obviously they're not strange to everyone but it's useful to note that what we may not even register as a change is a big difference in some brains.

Change

Perhaps the underlying issue with all of this is change - most neurodivergent people struggle with change, and the changing weather brings all of these different changes I've described and many more I haven't noticed or highlighted here. Even children playing outside more changes the auditory landscape and can be troublesome for some people. Even good changes are hard for a neurodivergent brain to adjust to, and some of those that come with summer are difficult or even distressing for some people.

Executive function

Perhaps this should come under routines, or under change, but all the changes that come with the season change can put an extra strain on executive function. Things that were previously automatic routines may need thinking about (when leaving the house I must now try and remember to take my sunglasses and to water the plants, as well as taking my dinner bag and rucksack which is my routine). There may be additional decisions to make, for example with clothing choices - perhaps I had a routine of which clothes I wore on which days and now I need to develop a new routine of summer clothes, which involves choosing outfits for a time. I need to choose whether to wear a second layer and when to take it off (bear in mind the complicated equation of tactile sensory issues, interoceptive issues and psychological issues as well as practicality about having a place to store the discarded layer and trying to remember to take it home again later!). Of course difficulty sleeping in hot weather impacts on executive function too.

All of these factors mean other executive functions such as emotional regulation become underfunded, as it were, with the effort diverted to adjusting to the changes.

So if you care for someone of a different neurotype, hopefully this will give you an idea as to the kind of things that might be going on for them. It may not be as simple as "defiance/temper/control" in children, or irritability/inappropriate behaviour/exhaustion in adults - the brain and body are doing a whole lot of extra work to try and come to terms with changes, discomforts and confusion. What looks like an overreaction may well be proportionate to what is happening for somebody. Compassion, understanding and a step by step approach can all help to make these things easier, as well as making sure there is even more time/space for whichever activities/environments help your person to be well regulated.

Lost in a helicopter (sensory-being/object mindfulness)

Another day, another sensory-being mindful walk. I don't get these so often now - my sensory-being* is usually shared, which is wonderful in its own way - so being given nearly half an hour to myself with the instruction/agreement to use it for a mindful wander was a relished treat.

And the fact that I could take up that opportunity in autumn is not taken for granted. My brain was in a place where I could lose myself in the moment where often I tend to either become overwhelmed because of associations and memories, or to avoid or dissociate for fear of that happening.

So anyway, off I toddled on my mindful wander. My feet found a spiky floor that they enjoyed feeling through my shoes, and then some benches that are pleasant to stand on. However my attention wasn't drawn after that by the Wander Path (oh pants, it looks like I still haven't written a post about that to link to!) like it often is - most times some sight or texture will invite me in to linger but none did. I didn't push it, just wandered on, waiting to see. It was the scent of the fir trees in the end that called me, but what it called me to was a helicopter - the kind that you used to spin in the wind as a child; sycamore seeds.

And so I was lost to the world for a good five or ten minutes, first feeling the flat sides between my fingers - still and moving - the veins of the seed pod making gentle ridges beneath my skin. Inspecting it closely, drawn into the visual pattern, then turning it sideways and seeing the pale, smooth line it made against the backdrop of fallen leaves on the path below, feeling that line between my thumb and index finger, smooth yet sharp, curving round infinitely. The bump of the seed at the end in contrast. Then deeply breathing in to see whether it had a scent of its own: not the sniff you do when you think you want to smell something, or you want to demonstrate that you are smelling, but the deep slow inhale through the nose that allows your sensory receptors to really do their job to the full. Helicopters have a scent. Then I have to say I was thinking about as many senses as possible and did have to find out if it had a taste too, so I did lick the helicopter. I felt the patterns from earlier on my tongue. I became more deeply acquainted with the helicopter, understanding more of its being with every new aspect I experienced and the longer I spent on each. I went back to smelling, and one side smelt stronger than the other. The first side smelt stronger after I licked it - maybe one side smelt stronger because I had licked it more? It felt different between my fingers from when it was dry. I held it up to the breeze, watched it spin to the ground and it was gone. My moment finished, it passed on to its own next moment; the fleeting crossing of our paths stretched out by my curiosity and a suspended moment in time.

*sensory-being explained here by Jo Grace of The Sensory Projects, where I first encountered the concept. Or search my previous posts for my own witterings on the subject and how it overlaps with mindfulness - you can start here.

The sensory delights and trials of parenting a newborn

There is a fundamental change when you first become a new parent. Your house becomes a different kind of house, and you become a different kind of person. I live in a House with Baby Toys, a House Where you Might Find a (clean) Nappy on the Living Room Floor. A House with Baby Clothes on the Line. I am a Person with a Car Seat in Their Car, a Person who uses the Lift Because of the Pram, A Person Who is Late Because the Baby Needed Feeding. 

I like being a Person With Baby Feet On Their Leg!

Of course not everything changes (See my previous post! Although things are very different now from when I wrote that), but the shift is pretty major and there is a lot of re-categorisation work for the brain to do as it tries to make sense of what life is now.

Along with this shift come many new or changed sensory experiences. These must be different for everybody and must affect everybody differently but I think I would have found it interesting to read some examples before I gave birth. In fact I'd still be interested to read others' experiences now! And different experiences of the sensory aspects of pregnancy for that matter.

A few of the notable sensory specialities of having a new baby for me:

Smell experiences. 

You'll be able to think of plenty of smells associated with babies, I'm sure. But I have a super strong awareness of some of the less obvious ones. I smell different. I don't know if it's the hormones or just from being so close to each other, but my body smell has changed. In the early days I definitely smelt like him; now it could be either or both. 

There is also a pervasive aroma of dried milk and our mixed sweats. Thankfully I actually like this smell, possibly because I'm all full of hormones, or possibly because as a bodily smell it is easier to process and therefore calming as an early developmental experience.

(Note, on checking and finishing this post six weeks after I started it, so just about three months into Baby Peggy, these experiences are much less intense. I guess he smells much less like a newborn, we are all a bit better at feeding so a bit less dried milk and skin to skin, and it isn't so hot so we aren't as sweaty!!)

Touch experiences.

One of the biggest difficulties I encountered and potential barriers to me breastfeeding was the wetness. I discovered I really hate being wet, and even worse, wet fabric. If makes me uncomfortable and miserable and irritable. There is a lot of wetness involved in feeding a baby. Leaking milk from the side you're not using, fountains when baby gets overwhelmed and comes off mid-let-down, dribbles when the latch isn't good, and of course spitting up after feeds. It might seem disproportionate but the constant getting wet really affected my mood, to the extent that even though feeding was going well I questioned whether I could continue. Thankfully I was able to problem-solve with a little help and with a never-ending supply of muslins, and milk collection shells and reusable breast pads I can stay happily dry when feeding and in between. What a relief!

Tummy to tummy 💗

Some of the most rewarding sensory aspects of having a baby are tactile for me. Having Baby Peggy's weight and warmth on me is super calming: worlds beyond a weighted blanket or even a squeeze vest I think. Having him in the sling when I do stressful things helps keep me calm. But the real trump card is the moments when I find us tummy to tummy. There is something primal, visceral, soul-filling, about that particular sensation that just transcends the words I have to describe it with! 

Those are the main ones which were huge for me but potential other considerations:

Sound experiences.

Babies cry. Some more than others, but all babies cry a certain amount. The sound is designed to be hard to tolerate. This can make it extra problematic for people who are particularly sensitive to certain sounds. Or perhaps some people with strong auditory sensitivities have found ways to cope (certain types of earplugs I have heard of, and I'm sure there may be other things that help) and so don't find it much worse than other sounds. Or perhaps the processing is different and so the emotion and the sound may be less strong (or indeed stronger) in some people.

Luckily we like his favourite
singing hedgehog too!

For me another one to note is changes to the soundscape of the house. Someone will undoubtedly give you noisy toys. We have a baby gym that makes noises but thankfully they are noises I don't mind hearing repeatedly (some I would struggle to cope with so we may be "losing" a lot of batteries if we acquire too many electronic toys in future!), but it can still be surprising if the baby is not on the mat and one of us sets hedgehog off unexpectedly!

The sounds of his shuffling and snuffling at night are also new, the washing machine is on more often, I tend to listen to music more because he likes it (and the types of music he likes, especially in the car!). When he was tiny he made a funny sound at the end of a yawn that inexplicably infuriated me for a moment every time, but then it also used to sound like we were on a pirate ship at night as he snored, which was actually quite soothing and very cute.

And of course his cooing and early vocalisation practice. Which melts my heart every time. And with that grin...

I've had to rethink my
whole laundry-hanging
system!

Visual experiences.

As I mentioned earlier, the house looks different. Baby toys, baby clothes, nappy buckets, baby bath, baby sleeping places (we even had to move our bed slightly to accommodate his bedside crib, which is not only a visual adjustment but can affect the proprioceptive and other senses as you navigate the room!). General baby paraphernalia all over the place! I know of one friend who very slowly made these adjustments throughout her pregnancy - perhaps a helpful tip.

But also, you get to look at a really cute baby.

Taste experiences.

I didn't think there was anything to write here, but as I come to check over and finish this post a few weeks on, I have had to trial a dairy free diet for his digestion, so am having to adjust to new tastes as well! Thankfully there is a lot available these days so it has been easier than I feared. NB cashew milk is the closest I've found to cow's so far, oat is nice too, coconut yoghurts are not nice but coconut ice cream is (well, Aldi's chocolate brownie ice cream, anyway...). I don't reckon vegan cheese would be worth trying...

Other senses.

Getting back on these
bad boys!

My proprioceptive and vestibular senses are a bit sad since having a baby as they become rather neglected when permanently glued to another being who can't control the movement of their body. I use these two senses to keep myself regulated and feeling well, so I really notice it when I haven't been able to stretch or move in ways that feel good for a while. When my body isn't happy, I'm less happy. So recently, now that I've become aware of this and now that Baby Peggy is sleeping and playing a little more independently at times, I try and prioritise moving my body even if just for a few minutes each time he is somewhere that's not me. It really helps. 

Sometimes you can
sneak a bit of vestibular
input even with a baby...

Interoception-wise, I have to try and be extra conscious because I am not super-sensitive in this area. I often realise fairly late on that I need the toilet, or am thirsty or too hot, so now I try and intentionally attend to all these needs before I sit down to feed - go to the toilet, make sure I have a drink nearby (although I think breastfeeding actually makes me more conscious of thirst) and am dressed right for the temperature. Thankfully on the evenings and weekends Mr Peggy is great at refilling my water whenever it is empty, bringing me the food I need, putting my fuzzy socks on for me etc!

So there are my thoughts on the sensory aspects of having a baby. Please let me know your experiences and thoughts - I'd be really interested!

Is it OK that Everybody's Toolbox is Different?

Somebody that I know has been thriving in a setting that is fairly new to them. It is a very controlled environment with minimal disruption to routines or unexpected occurrences, and a limited number of people, nearly all of whom are known and only a few of whom are regularly in the room. There is little change in the sensory environment beyond daily variations caused by weather etc. This person notices any other changes very quickly on arrival into the room and discusses them to help them process the difference. When the person is tired they are easily overwhelmed by sensory stimuli or mishaps, but generally they manage well and thrive in the setting, developing skills rapidly and displaying positive signs of good wellbeing. 

Masking serves a protective
purpose but is harmful

Life at home has improved too. More dysregulation is seen than in the setting (Home is a safe place and it is completely normal for more distress to be expressed in the home. Where the distress is displayed is often not the same place as the place that causes the build-up of stress.), but markedly less than before spending time in the new setting. This means the improvements seen in the new setting are likely to be genuinely benefitting the person rather than them masking until they get home and then experiencing even worse distress.

The situation that is causing most difficulty for this person at the moment is going out and about in the world. In the new setting and at home independence skills such as walking and managing their own levels of sensory tolerance (eg. asking to wash hands before sensations become completely overwhelming and lead to meltdown) are really coming into their own and meaning this person can access many more of the opportunities they want to in the way that they want to, but it's frustrating for them and upsetting for those spending time with them that this isn't working in the community yet.

The noise of the street has been raised as one issue that may be contributing to their overwhelm and dysregulation when out and about and my first go-to was to wonder aloud whether they would benefit from trying ear defenders. The initial response from another person in the conversation was hesitant. "Hm... but we wouldn't want them to get overly dependent on them and not learn to cope. They might just wear them all the time because of the novelty factor."

Now, ear defenders or noise cancelling headphones are not a simple fix. Some people find the physical sensations of having them on their heads worse than dealing with the sounds. They are more effective for dulling certain sounds than others so their usefulness depends somewhat on which sounds are bothersome. So they may not be useful for this person anyway and I'm certainly not going to enforce something that doesn't benefit a person. But at this point I was simply thinking allowed about offering an opportunity to try them out in case they did help, and the initial response surprised me from someone who is enormously caring and only ever wants to bring benefits to people's lives. 

To begin with it bothered me and I felt cross that they could be so cruel and potentially deny someone something that might help (the person described wouldn't be likely to have this idea themselves or the possibility to source the resource) because in their view using ear defenders would be a negative thing. Then I had a word with myself and realised that this was not the intent. I know this person and they have no malicious intent. They want to help, but they are uninformed and I might be able to help them to see a different perspective. 

The beauty of a good working relationship and reflective people who genuinely want the best is that we can have these conversations and we are willing to change our opinion when we are shown new aspects of a situation that we weren't aware of. 

New skills and resources are so much fun!

I pointed out that our friend does definitely overdo things on the novelty factor but that it only tends to last a couple of weeks. When they learnt to drink out of an open cup with a straw they drank excessively for two or three weeks, but this soon regulated itself to a normal intake with little to no input from those around. 

And what I hope I remembered to convey is that tools and aids are called tools and aids because they do just that. They help. They mean you can do more than you could otherwise. Just because someone can walk short distances sometimes doesn't mean that they should never use a wheelchair if it means they can access places where they can't walk the distance, or where they can stay for longer because they haven't used up the energy walking. Using a wheelchair to get around a shopping centre might mean they can get out in the shops to look at the items, and that they can visit more shops than if they were walking. And anyway, if someone needs to wear ear defenders 24/7, why shouldn't they?

"Learning to cope" is a dangerous phrase. It usually translates to "learning not to outwardly show distress." And if that "learning" has ever happened to you, you will know how dangerous it is. Sensory issues can change over time but far more often the distress is simply transferred. It may well be internalised, meaning immediate distress is not seen but building higher levels of background stress and lower tolerance to triggers: more meltdowns later. Sometimes there is shutdown instead of the forbidden meltdowns (these are just as distressing for the person, but don't tend to bother others), or people learn to dissociate, or self-harm in a hidden way to cope with the overload. The damage to a person's identity from learning that who they are is not acceptable leads to mental health problems that may or may not display in typical ways. The exclusion from activities and settings that they could enjoy and benefit from with a few simple accommodations is not only a shame and a sad thing that people are missing out. It is a disgrace if there is something we knew we could do or offer (or allow others to do) and we don't. 

You wouldn't deny someone sunglasses at the beach because if they just went without then they'd learn to cope. You know that not wearing sunglasses wouldn't kill them, but you also know they will enjoy their day more if they are wearing them. 

Would you tell a short person they should really be able to manage without using a step to reach something on the top shelf? Would you refuse to let a dyslexic person use a colour filter to assist their reading and tell them they will manage in the end without it?

Aids used by people whose brains use more space to deal with input or tasks are exactly that. They make life easier, they make tasks quicker, more comfortable, more enjoyable and allow people to do more of what they want and need to do. They do not signify laziness, a desire for attention, or weakness. They are tools used by resourceful people who are actively trying to participate in their own lives in a world where that is more difficult for them than for other people.

Everyone uses tools, it's just that you're used to seeing sunglasses, dishwashers, cars and scissors. Next time you see a tool in action that you don't use, instead of writing it off as weirdness, laziness or weakness, have a look at the function it provides and see if you can imagine all the different benefits it brings its user. 

Some tools seem to bring judgment on their users, and it isn't right.

Edited to add: Variable Conditions

This happens all the time to people who use different tools from "the norm" and to people whose conditions vary (think of the wheelchair example above). If someone doesn't need an aid all the time, it still doesn't mean they are being weak or lazy or demanding attention when they do use it. It simply means they have greater need of it at that time.

Even in a special school where we should be helping people find skills to regulate their own internal state in whatever way works for them, I see judgment of using tools and aids worryingly frequently. Talking is somehow "better" than using AAC (alternative or augmentative communication, eg. text to speech apps, writing, Picture Exchange Communication System). If you can talk suddenly it may be frowned upon to use a different method of communication even though they've been teaching you to use it for years... And you can say more with your AAC... And you can say it with less stress with your AAC... Surely communication (and thereby increased wellbeing) is the goal, not speech?

I'm here to say, as a generally verbal autistic person with relatively low support needs and a largely independent life, these things matter. I am non-verbal at times. Just because I can talk most of the time doesn't mean I always can. And even when I can, it doesn't mean I can say what I need to say or that it's my most effective communication method. In therapy I have used writing at least as much as I have talked. In some situations eg. shutdown I use a bit of signing, or flashcards or write a note. It gets my problem solved, which I wouldn't be able to do verbally. The more tools we give people to put in their toolbox (and support them to be able to use them), the better equipped they are to fix problems and to build things they enjoy. Why wouldn't we?

Sleepy feet!

So a few weeks ago I had a funny conversation with my OT. Not the one about whether I can put both feet behind my head, though that one was funny too. (It turns out I can, in case you were wondering and don't follow me on Facebook.)

On my agenda for our meeting was Item 4: Feet. He enquired as to the nature of what we should discuss about feet. I explained that my feet don't like being in shoes all day: they get very sad.

"Where is the pain?" he asked. 

What pain? When did I say they hurt? "There isn't any pain," I explained, "they just go sort of dead."

"Ah, so you can't feel them, like they're numb. Have you tried some different shoes?"

Insoles I already owned with a
massive metatarsal support and arch

Nope. It's like they're not there... they're not a part of me... I need to be able to feel them... They need more sensory input. We got there in the end! Luckily I'm pretty sensory-aware and was able to explain more to him about the exact kind of input I needed after I rejected all his initial suggestions because they were all wrong! Once he knew what I meant we came up with some great ideas. And I must get round to trying those toe socks we all had in the 90s, if I can find some cotton ones...

Trampoline park socks I already owned

The funny thing is, when I tell some people about the feet problem they know exactly what I mean straight away. Others have no clue what I am talking about whatsoever. Is this an example of the double empathy problem? We don't understand each others' method of communication. Or perhaps just that it is not a problem for some people (or not one that they are sensory-aware enough to recognise) and so they don't have language to describe it or to understand my description of it?

Compression socks (technically for
plantar fasciitis), dead thin and fit
easily under normal socks

Who knows, but it struck me as a good example of those times when I think I am talking about a simple everyday concept only to find someone has no idea what I am on about. Maybe I should start a running list of them, that could be interesting! I have a feeling the people that know what I mean tend to either be autistic/neurodiverse in some way or spend a lot of time with people with sensory differences...

I won't wear make-up on Thursday: Body Intelligence gleaned from staying in bed!

OK, it's true I didn't wear make-up on any of the other Thursday either, but that is a reference for the Cool Kids who both wear make-up and listen to "actual music". Maybe I should have picked the more accurate line from the song "I will do nothing on Thursday: sit alone and be."

That is exactly what I have done. Well, I went and let the chickens out about lunch time to get rid of the anxiety that I hadn't done that or fed the guinea pigs. Brought the Piggle Peggies in for moral support and returned to the land of bed. At 3.30pm I even progressed from a prone, under-several-duvets state to seated with just one merely draped over myself.

I had done that thing that's meant to be sensible (although admittedly it may come slightly out of desperation too) where you communicate that you need something before utter disaster hits. The trouble I have discovered though, is that then if you get the thing Brian tells you in no uncertain terms that this is a catastrophe. You shouldn't have the thing: no-one else has the thing - why are you any more entitled to the thing than anyone else? Accommodating the thing has cost other people: you are an even worse person for needing, and taking, the thing. You didn't really need it anyway, you just quite fancied it - you could, and should, have managed without it; after all, nothing terrible happened to show that you needed the thing, so you must just be greedy and lazy. Now that you've had the thing, what if you actually need it in the future? You've already had it so you'll have to manage without next time. You can't carry on like this, "needing" things left, right and centre, you need to pull your socks up and get on with life like everyone else.

Contrary to appearances, I haven't just come here for a whinge about the Brian. In my nothing-ness and the approach to it I stumbled on a couple of observations.

The sensory may be more involved than I think.

A perfectly adequate set of resources for
the day

This is funny, because I've just started reading a book by Penny Greenland of JABADAO* about (well, partly about) how body intelligence (the is a whole chapter just introducing the concept of what this is) can be used in the mind together with intellectual intelligence to approach everyday issues and problems.

In the lead-up to realising I needed some space I first noticed my brain responses: getting irritable, decreased patience, increased behaviours and unhelpful thoughts. Then as things progressed over the next day or two and I became more stressed rather than less, on the final day I was much more aware of sensory responses. The piercing vehicle-reversing-beep I had to block from my ears, a scratchy label in my clothing, appreciation of darkness. The all-pervading discomfort caused by a foreign and distasteful (to me) scent on my fleece, that became so unbearable I had to give up my fleece. The proprioceptive/touch dysregulation of not wearing my fleece when I'm already stressed. The overheating of my body from the down bodywarmer I luckily had in my car that I fetched at lunch time to solve the proprioceptive problem.

To be very brief, something like this...

I don't know whether it's that the warning signs come in this order - the lower-level stress is signified by more cerebral warnings and the sensory warnings signify that things are escalating - or that my awareness works in this order: the more significant my stress levels, the more I function on a sensory level and the cognitive loses priority. I suppose processing capacity is decreased when under stress so this would make sense. Now that I think about it, there's a lot of theory that explains this, but you can go and Google that - I can't be bothered to talk about it now (but if you ask I'll go and find it!). Yesterday I also began exchanging words quite bizarrely. I explained to my fellow class Peggy that I was going to cut the Duplo lengthways to make it fit. I meant Velcro. Just picked the wrong word. I used the word purple instead of person to the same colleague about five minutes previous to this. My thoughts were jumbled and I wasn't properly paying attention to myself or anyone else.

I came across a quote in the JABADAO book today: "This woman's focus has changed so thoroughly from intellect to body that stringing words together has become difficult. She has swapped an intellectual way of being, for a body way" (page 33). I laughed aloud when I read it because it seemed so apt. The lady in question had made this transition intentionally, but I had perhaps begun to make it unconsciously, which is why the kind of work described in the book is so important. Becoming aware of and utilising this body intelligence can help integrate the systems and employ them in a helpful way.

As I was sitting alone and being today, I attempted to be mindfully aware of my frustration, my guilt, my fear and anxiety (two distinct states/thoughts for me) allowing them to be, while listening to what my body needed and permitting it to have that. It meant I stayed in bed for a really long time. It's now 4.30 and I'm still there in fact. I never stay in bed for that long. I sometimes have days where I stay a pretty long time, but eventually my body tells me it's time to do something else. I can feel the time approaching, but it hasn't come yet, and I'm trying to ignore my own judgmental feelings and my feelings about how it would appear to others and not rush my body into doing what it's not ready for.

As I knuckled down and did nothing I found some of the reasons why here was the right place today. They were mostly sensory. It's not that I'm in a dark place mentally and can't "summon the motivation" to get out of bed (don't get me started on people making those kinds of judgments). I am not psychologically bound to being here. Neither am I intensely physically exhausted and thus unable to get up, although I am tired. This time, my body has told me that this is the right place for it to get what it needs right now.

Not laziness. Important work to enable
future functioning. Down with shame.

What it needs is a lot of touch/proprioceptive input. When layered for weight, duvets and blankets give my body the perfect way to receive input to my body's entire touch receptor; its largest single organ, the skin. A friend once told me of a discovery that the more of her that was touching something, the more comfortable and relaxed she felt. I am exactly the same, and the only thing I have found that beats a good pile of duvets is swimming. When I move in water (not necessarily in a conventional "swimming" way, but in the way my body wants to), it moves past every cell of my skin. I find it exceptionally helpful and regulating, and now that I've written that, I've realised that was my first sensory clue to my dysregulation. I noticed the immediate calming effect of being in the hydro pool the day before the other sensory clues and commented on it at the time.

The other reason I needed to be in bed was to regulate via the olfactory sense. I would certainly never have intentionally sought this method of helping myself, but sometimes my body knows more than my brain (body intelligence...). Now I know that this will disgust some of you, but try and let go of your social conditioning for a minute and bear with me. Our own smells and those of our loved ones are some of the earliest developmental experiences for our olfactory sense, and thus easily processed and calming (credit Joanna Grace). I became aware part way through the day that I was frequently seeking this input, putting my fingers to my nose, and even smelling my own shoulders and arms (weird, I know!). When I leant over the other side of the bed I smelt Mr Peggy's smell, and after stroking the Piggy Peggies my left hand smelt of them. All of these were contributing to the gradual regulation of my body.

The final piece of body intelligence I gleaned also came from Hopping Home Backwards. There are little exercises throughout the chapters which aim to help the reader understand better by experiencing what is being discussed. All I could notice was that every time I tried one - they are all about listening to the body and what it wants - all mine wanted was stillness. It didn't lead me into any kind of movement unless there was a part of my body that wasn't touching something and then it asked to curl up smaller or snuggle into a bit of duvet. For me this was surprising. Mine is a body that likes to move. It needs to move. It needs to stretch a lot and it is useless at sitting still. But all it would do today was be still.

And I'm pretty sure it was right. I was right when I communicated that I needed some space. Whatever the Brian said afterwards, and it is shouting loudly as I write this, I did the right thing. And it was right to do the right thing. My brain can sometimes lie to me, but my body knows and tells me the truth. You've done enough. Sit alone and be.

*Hopping Home Backwards, Greenland 2000.

Develop Your Sensory Lexiconary!

The second of my fabulous learning opportunities came in the form of Joanna Grace's Develop Your Sensory Lexiconary day.

It was long-anticipated and my appreciation was only increased by the external and internal barriers that threatened to get in the way right up to the last minute. (I won't digress here but thanks to nice people who are kind to me. You probably have no idea it was you who made that minute or hour or day manageable.)

As expected it was a captivating day, stuffed with knowledge, insight, inspiration and food for thought. Home time arrived and I felt like we'd only just started! I wish I could have brought everyone I know who works with sensory beings. (Sensory beings are people whose primary experience and understanding of the world is sensory, as opposed to linguistic beings who experience and interpret the world through language. Think about people with profound and multiple learning disabilities or complex autism, young babies and people with later stage dementia.) And then I'd have sent them on the Sensory Stories day and the Sensory Engagement for Mental Wellbeing day. I really must not sit and extol their wonders here. Suffice to say your understanding and practice WILL be transformed if you attend.

The day in full swing! Sensory delights galore!

I'm obviously not going to recount the whole course content, but in short, Jo takes her delegates on a journey through seven of the senses, exploring the development of each and ways to choose and use resources in an engaging and meaningful way. These sensory conversations, when facilitated effectively, support both cognition and mental wellbeing: I would assume this is a goal for anyone regularly interacting with sensory beings.

I fell asleep on the bus on the way home, but not a chance during the day: I was hooked! It's not just listening (although Jo is a particularly engaging speaker) - you are constantly exploring resources, experimenting, seeing snippets of theory in action through video, being thrown tantalising tidbits of research and rabbit trails there isn't time to explore, and learning through doing and through questions and comments from other delegates (it is also a great way to discover who else is in your area and what they are doing and to steal little bits of expertise or stash away contacts for later!).

Why, thank you for asking,
yes we did retro-nasally taste Skittles!

I've been on two of Jo Grace's training days before, but I still learnt plenty and came away inspired and full of ponderings on people I spend a lot of my time with. I didn't know that biting something really hard floods the body with calm chemicals (or why). I didn't know that detail is as exciting to the brain as high contrast black and white images in early development. I didn't know that rap might be more "beneficial" than Mozart for a baby. I hadn't thought about intentionally supporting the development of subconscious senses (eg. proprioception/vestibulation) with conscious ones: pairing a clear fixed visual experience (or very localised sound source or directional stream of air) with the vestibular activity to give the brain a double whammy of easily processed input to help make sense of the world.* And you can't afford to miss the empirically evidenced effects of swearing (including different types of swearing and why they have the effects they do).

You'll recognise this one
if you've heard
me on JABADAO!

I was reminded of what we get from early developmental experiences: they are the most easily processed - what we have had most exposure to and most practice interpreting. They are like junk TV for the mind: it can just lie back, not really engage and mindlessly (as it were) enjoy/survive the moment. It's why many of us sleep in those early snapshots of developmental movement, why pink light is calming,* why a heartbeat rhythm soothes and why heavy-based scents are relaxing (they are closest to our own natural smells which we are socially conditioned to declare repulsive).

Ever since, new thoughts keep coming to mind about the people I spend my days with. My friend who needs lots of squeezes and constant proprioceptive/touch input - would it be even more calming in a heartbeat rhythm? Another friend who needs to explore everything by mouth - I can support his development by providing resources he can hold at the same time to aid his mental mapping skills to develop through his hands as well. I could go on, but I won't!

When you are taken through all the jobs your brain is doing when looking at a red ball being moved slowly from left to right (and the difference between that and a static jiggling red ball!) it is a wonder anybody learns to understand the world visually, and really highlights the monumental effort and athleticism that people approach the world with every single day. Linguistic beings take so very much for granted.

We also miss out on so much. It's well-understood that it is beneficial to spend time with people of different demographics, and here is a case in point. Experiences created with sensory beings in mind benefit everybody (I won't ramble on about why - it may well be self-explanatory, but do ask if you're not sure and I will be happy to ramble!). Sensory conversations are fun, interesting, challenging and engaging just as any other conversation: they are time spent getting to know somebody, seeing the world from their perspective, hanging out with somebody, being present.

With all its flaws and quirks, I marvelled at the human brain today.

Just a couple of current favourite sensory experiences for me ;)

Credit for all those little gems to Joanna Grace. Find her on Facebook, Twitter and LinkedIn as well as her website The Sensory Projects to find out more (she can probably point you to the right research sources, which I am less likely to be able to!) 

* And as an interesting incidental link to my previous post, Jabadao already do this when they tour with the Tig: the dancers wear black, white and red and the lighting is pink. I told you their work is based in research, and it's not just the movement stuff!

A sensory processing meditation

Imagine it’s Monday morning.

You are getting ready for work. You’re not a hundred per cent sure whether you can face the thought of another week. You’ve got some tricky meetings coming up and a load of data that needs to be done accurately, but you work with a supportive colleague and you know there’s some fun planned in the afternoon. Anyway, you don’t have a choice, because you have to pay the bills and your partner would hardly be impressed if you refused to go just because you didn’t feel like it. Not to mention your manager.

You get out of bed and prepare for the day. You’ve got an outfit in mind that will help you take on the day. What have you chosen? What is it made of? What colour is it? How does it make you feel? Relaxed? Powerful? Cheerful? 

Go and open the wardrobe and look inside. You see that your clothes have been replaced by a very impressive yet rather cumbersome suit of armour.

It’s the only thing there, and you can’t go to work wearing nothing. Your partner who drives you to work is hurrying you along. It’s time to go. You need to be at work. You have a meeting at 9. You can’t miss it.

It’s difficult to put the armour on. Your partner has to help with the gauntlets. You have no idea how you can even begin to do the day wearing this. You have to wear the sabatons on your feet as well. Your partner fixes them on and practically drags you out of the door. It’s hard to co-ordinate your movements.

You arrive just in time for the meeting, but every movement reminds you of this suit of armour. It gets in the way. It makes some very unwelcome noise in the serious meeting. It’s very uncomfortable. The corners dig into your muscles. You must present the information you have brought to the meeting, but you can’t see out properly. The helmet is too tight, squashing your head. All eyes are on you, wondering why you’re not explaining the data. Your elbows and knees rub on the hard metal every time you bend them.

Perhaps you can take your attention off your predicament for long enough to notice that everyone else is wearing armour too. But they all seem perfectly comfortable and are moving on with the meeting smoothly. 

The meeting ends and you never did manage to make a valuable contribution. How do you feel? Angry that you didn’t perform well and it wasn’t even your fault? Ashamed because the manager you wanted to impress was there? Upset? Exhausted? Not to mention in pain and way too hot by this point. But you can’t take the armour off. Everyone else is wearing theirs without comment, and it’s not even lunch time.

"Don't worry, you're fine really!"

You manage to find a friend on your coffee break and ask what is going on and how on earth they were able to cope in the meeting. You friend reassures you that everything’s fine. Don’t worry; you’re OK. Just keep going and focus on the things you’re doing. You’ll get used to it - see - we’re all OK. 

After lunch you discover that parts of the suit are actually lined with sandpaper, and that is why you feel like the skin is rubbing off your toes every time you take a step, and why you get such pain when you stand up and the suit rests heavy again on your shoulders. But when you try leaving your hands and feet uncovered after lunch, you are told in no uncertain terms that it is unacceptable to present yourself like that. You must look the same as everybody else or you have no right to be one of them. You think perhaps you would rather not be one of them, even though you were so desperate to impress this morning. You remember that there were parts of the day you would have enjoyed if you’d have been in that outfit you had in mind this morning. The one you couldn’t find in the wardrobe. 

But by now it’s an effort just to endure what should have been a fun afternoon, and all you want is to be at home, in your pyjamas, safe. 

The constant pain reminds you every minute that you are wearing this suit in response to a requirement of yourself (you can’t go to work naked and you must go to work), your partner (you must leave the house now, and we need to pay the bills) and your manager (you must look presentable like everybody else). How does that make you feel? Angry? Hostile? Rebellious? Now imagine that you have a condition where you find it difficult to comply with your own and others’ expectations or demands even when you need to do something that you really enjoy. How much more difficult does it make it to keep this suit of armour on?

You reach the end of the day, get the suit off and crawl into bed. How do you feel now? Defeated, that everybody else just functioned as normal but you couldn’t? Worthless, because you couldn’t overcome the challenge? Cheated, that you couldn’t enjoy the fun? Frustrated, because you couldn’t prove in that meeting what you really can do?

~~~~~~~~~~~~~

And how do you feel when you find out that everybody else’s armour was fake? Fleece lined and flexible. They weren’t acting differently because it wasn’t different. They didn’t see the difference in your armour. They didn’t listen when you tried to ask, and they didn’t believe you when you tried to say you couldn’t do it. “You’re OK”, they said. “Just get on with it.”

~~~~~~~~~~~~~

NEVER assume you know something about somebody or their experience unless THEY have told you. You can’t assume that because you, or the majority of people, find something comfortable or acceptable, that the individual in front of you also does.

You can’t assume that because you get a sense of belonging by looking the same as everybody else, that all people do. Some people find their sense of belonging in being understood and accepted. In feeling that their needs are reasonable and that they are supported to contribute to the best of their ability. Without that feeling, they will never have a sense of belonging, no matter how much they look like the others in a group.

If we want to call ourselves an inclusive community, let’s not miss an opportunity to create the feeling of value that is so easily stolen from so many vulnerable people.

Bodies are strange!

A strange thing happened to me last night, and it's very sensory/proprioception/JABADAO! related. I thought I would share just for fun!

I prepared for bed as usual (or as usual for nights when I'm on my own at home anyway) last night, and settled down to sleep in preparation for another day at work. I am generally one of those very lucky people who has no trouble with sleep (other than stopping it!), but I had had a lie-in that morning and was (as usual) anxious about the following day so sleep evaded me.

I'm fairly patient and enjoy being cosy in bed so happily waited for half an hour. Wasn't feeling any more sleepy. Not overly concerned due to the lie-in, but beginning to worry how I will ever drag myself out of bed in the morning and manage on little sleep. Thoughts still flying round Brian. Picked up phone or book and read for half an hour. Thought should try again or the next day would definitely be a write-off. No Mr Peggy so lots of letting my body try different positions it felt comfortable in. No luck. Felt a strange urge to be in a kind of upside-down, rolling-over kind of position. Ignored it because a) too much effort to move that much, b) that would definitely wake me up more not send me to sleep! Body was persistent in wanting that particular movement so eventually I gave in, having nothing to lose by now! Good job nobody there to see! Stayed there for a good while because that's what body wanted. And weirdly noticed body winding down, slowing down and moving towards sleepy. Eventually it led to a more laid-down version, still a position in which I would NEVER expect to fall asleep (I usually only fall asleep in one or two positions), where I actually dozed off! Woke up a bit and transferred to pillow, and hey presto; great night's sleep. Weird.

Basically one of these! Magic sleep position. Who knew?!

And who knew I would find a picture similar enough that I don't have to keep trying to take one,
because it turns out it's actually quite a task on your own...