More Letters

Today is a wading-through-metaphorical-treacle day. A zero executive function day. A day where I keep finding myself motionless, staring at the items on the supermarket shelves and the world seems distant. 

Only the items on the list are bought, and the ones that left any room for interpretation are left unbought, because I don't have the capacity to make decisions about what to buy. The shopping has been brought into the house, but not yet put away because I just don't have the spoons. Having dealt with the full-change-of-clothes nappy incident at the beginning of the shopping trip, we also had to make another toilet visit before home time to deal with my anxiety digestion. 

It's the end of what I'm affectionately calling Stressy Season - the longest of my calendar-based trauma triggers - which spans six weeks through September and October. This year I finally have a name for all these things that happen to my body and brain when it is reminded of certain past events.

PTSD is not just the curled-in-a-ball-on-the-floor-crying-rocking-unable-to-speak-occasionally-with-screams-coming-out-or-hurting-of-self panic attack after the fire alarm. It's not being able to concentrate on what you're doing, it's dread when you look out of the window, it's feeling irritable at the slightest thing, it's going to lengths to avoid places and things that make you remember, it's feeling sick all the time and wild bowels, and so much more.

Dem autumn leaves are well threatening...

Autistic people are more likely to get PTSD and are less likely to have it identified correctly. We are both more likely to end up in potentially traumatic situations and more likely to be traumatised by experiences not traditionally seen as traumatic. Because of this and our neurological differences we are less likely to see and be understood by professionals who deal with PTSD and thus also less likely to receive helpful support (which again may or may not differ from traditional treatment). I'm thankful that a year after one misdiagnosis I was able to access a second opinion, and that this person understood and was able to explain to me all of these things about autistic processing and so forth, helping me to understand and accept that this is a box that applies to me despite "nothing traumatic having happened" (I did tell the first person nothing traumatic had happened, so I guess it's no wonder they thought nothing traumatic had happened...). I'm not just making a fuss over nothing; my brain is trying hard to do a job.

The lady in the supermarket who commented "Don't worry, I'm amazed how well you're managing it all" when I apologised for forgetting to put the little divider at the end of my shopping on the conveyor belt (another sign my brain is not doing its job) had no idea what "it all" really was. To be honest, a baby in a sling, who was by that point sleeping, is no trouble at all, unless maybe she had clocked the previous blowout scene. I didn't even have Pre-School Peggy with me. "It all" for me this morning was PTSD and the fact that I had to collect my brain repeatedly on my circuit of the shop and coax it into doing enough of its job to get us by. Everybody has an "it all" every day, and maybe that lady realised. 

Be kind, you don't know what "it all" is going on for those annoying people you meet.

My Baby Girl (bonding)

My baby girl. This probably isn't the post you're expecting. It's not about my beautiful, perfect newborn and how besotted I am with her. I wrote those posts after our son was born. My first child, pretty much the best thing that had happened to me and although near-impossible at times and full of difficulty and distress, each day brought the delight in my little bundle that is associated with welcoming a new life. My life felt completed and fulfilled by meeting and caring for this baby. 

Now I watch in confusion and guilt as friends and even strangers coo in admiration of my second child, who is almost indistinguishable in photographs from the first. They are entranced by her cuteness, in awe and wonder at her skin and her nose and her smell and vying for time with her. Now I know borrowing a baby is very different from keeping one, but these people seem to love her more than I do. It's all wrong, that's not how this was meant to be.

Can't deny those toes are cute though...

Not that I hate her or even dislike her (for which I'm hugely grateful), but that connection, that love and delight, it just hasn't come yet. Joy doesn't spring up the moment I pick her up, and my nervous system doesn't suddenly breathe when she flops warmly on me. She's OK, she's not horrible or anything, but she doesn't feel like mine.

I'm thankful I have mental health support in place due to my struggles during pregnancy, and that I'm reassured that actually the magic bond (whatever that is) is rarely instant and that in many or even most cases it takes days, weeks or even months to grow, just as getting to know anybody else in life. There's nothing wrong with me or with her, it doesn't reflect on me as a parent or as a person and it doesn't mean it's how I feel forever.

But just as I can logically know that she is mine yet not feel that truth as my reality, I can know that it won't be like this forever and it's not because I don't love her, while also feeling sad, confused, guilty and worried about it. 

I feel almost as though I have been robbed of our first few weeks together; like I haven't really been there. Perhaps because I had such a negative experience of pregnancy, and distanced myself from it as much as possible so my brain hasn't caught up, or perhaps because the birth was a bit chaotic and I didn't get to feed her for a couple of hours afterwards, or perhaps because of the complicated emotions surrounding having a second child and the monumental and sudden shift in relationship with my first, or even because of our previous miscarriage, I think I've somehow been a bit dissociated from the beginning of our life together.

I care for her, problem-solve about her, interact with her and make sure to smile at her and talk to her and respond to her cues. I do enjoy kissing her on the head and stroking her hair at the back of her head, because they are soft and it feels nice. And as time goes by, the times where her warm weight rests on me in sleepy trust are where the seeds of connection start to germinate. But a lot of it is conscious, deliberate, almost as though I'm watching myself doing it rather than being there doing it, feeling it happen naturally because she's my daughter. 

And that's why I didn't know whether I would post this. What kind of parent feels like this about their child? Who doesn't love their baby; their longed-for rainbow baby? Who has days where they genuinely would not be bothered if somebody said that they were taking the baby away? And what kind of parent would admit it? And what kind of child would be able to hear these things about their early days without being damaged by it? I am the biggest part of her world in these early days; I am all she knows about goodness, and so I feel ashamed that she trusts and loves me implicitly even though I feel like this. Thankfully the strongest of those truths did not last long, and as well as the negatives gradually ebbing, the gaps are starting to fill, little by little. But it turns out, the parent living those truths could be any parent. And IS a lot more parents than you'd know, which is why I will be honest about it. In the midst of those times that was my reality. I didn't know if or when it would change. I was terrified I would love one of my children and not the other, and even more terrified that they would realise or that I'd treat them unfairly.

Bonding happens differently for different people, and can happen differently with each new baby. It can be affected by a whole number of other factors, such as traumatic birth, ill health of parent or baby or another family member, previous mental illness, difficult life circumstances (eg. financial struggles, housing, relationship difficulties, etc). But a lack of bonding, or delayed or difficult bonding is not a lack of love, and it is not hopeless or to be endured in silence, pain and shame. It may feel like you don't love your child, but the love in that time is different. It may not be flowing, emotional, "love you to bits" (unfortunate phrase for the autistic among us...!) love, but the deliberate love of actively caring for your baby and pursuing a bond where it has not sprung naturally, is a dedication to the child you know is yours and want to feel is yours. And there are ways to encourage the emotional bonding, and to water the seeds of connection. If you're as lucky as I have been, there are people trained to help you along the way, but I do know how stretched services are. Many times the seeds will find their own way to grow in their own time. Because it feels scary or bleak or devastating or hopeless does not mean it is so or will always be so. As is the message I am so often trying to give, there is hope. I find it risky, dangerous, to hope, but even just a few weeks on from starting this post I can use experience to tell you just because something is true now, does not mean it will always be. 

And my second message is that there should be no shame or hesitation in talking about these things. I am quite an open person on this blog. I air many of my difficult emotions and experiences here in the hope that they will help others in some way by increasing understanding. Yet it took me two months to write and I really wasn't certain I would post this. Could I admit to people who know me what was going on underneath those first few weeks? I talked about parts of it, feeling different to having my first, and the sadness of missing him now I was spending less quality time with him, but could I reveal the depth and truth of it? Would people judge? Would they not believe me because I looked like I loved her? But there should be no shame. And so I disarm the shame by talking about it. Sometimes things in a brain just don't slot in how we expect them to, and we shouldn't have to carry that burden alone. I'm thankful I don't, and that I have Mr Peggy, close family and friends, and a bunch of professionals who are there for me. I know not everybody does, so if anything here resonates and it might help to share it, please do message me.

The long May nights

Every time I open the window in these sunny early summer days, the birds sing.

Every time, it makes my stomach turn over, my heart pump faster, my breath catch and my muscles tense.

I love the sound of birdsong, the brush of an evening breeze, but my body still doesn't. It's not as bad as it used to be; I don't cry, and most times I can tolerate leaving the window open or staying outside to finish hanging the washing on the line. I don't spend the next few hours or days stuck in inescapable memories and emotions. 

At 4am the village church clock chimes for the thousandth time tonight. The birds are in full morning chorus and I can't help but be transported back four years to those other sleepless nights. 

So different and so distant, and yet so close and familiar. It's not distress that keeps me up now, it's my second child, who's just decided she'll take after her brother after all and drag me into the mire of full on sleep deprivation. I should be thankful, and I am. Thankful that my life looks so different now. Thankful for the undeserved gift of these two precious lives that I didn't dare hope for. Thankful for less distress.

And (not but) I wish I wasn't awake right now, and I wish those memories didn't trigger such emotions and thoughts. 

Both of these things can be true. 

And I wish I could appreciate this second child for all she is, our long-awaited and even longer-hoped-for baby. It might just help me through the long nights and sometimes long days. But I think that's a post for another day. She's gone to bed so I'd better seize the chance for a few minutes' kip.

Tracing

You trace up my torso and down my arm with your fingertips or sleepy closed fist in the circuit of some imaginary vehicle, just as you used to trace the skirting board on the stairs long before we knew it was a road.

When one of your first words was "brrm" we gained a window into your inner landscape and experience of the world so that now in your peaceful dreamy state I have a good idea of the stories that are sending you off to sleep. The sensations that at times have been trying as I wonder how long you will need me here - how long tonight before I am free to make my own sleepy journeys and how many months you will need me to join you on yours - are cherished and stored up in these days, because I know no matter how many they are, they will be limited. You will not always be this small, this close to me. And soon you will have to share me with another little person with their own journey to sleep, and our nights might have to change even if you haven't chosen it.

Each moment is a privilege and a treasure as you grow into your own person. I'm proud to see you need me less as you gain confidence with others and skills of your own. I enjoy sitting back and admiring you being you and not always needing me because you had me when you did need me. But precious boy, I hope nothing more than to always be here if you want to trace a path to the old familiar home.

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.

April, Awareness, Acceptance, Anarchy

Okay, I'll be honest and tell you there's nothing about anarchy in this post, I just got bored of the boring stuff. Unless I decide to throw something anarchical in for a laugh. Most likely my use of the "word" anarchical is about as lawless as it's going to get.

I absolutely did not plan to write anything on this topic (awareness/acceptance etc, not anarchy) during April. I actually got a bit tired of posts about autism awareness month, autism acceptance month, people supporting it, people getting cross about it, it kind of put me off Autism a bit, as it were!

BUT as tends to happen, I had a moment which got me thinking.

I had one of those jolly things, a meeting about me, yippee. They usually start with people giving a brief overview of what has happened since any previous meeting. I was happy enough with the first person's summary of our work, detailing how we had made reasonable adjustments and Peggy had worked very hard etc etc.

Then the second person said something in their update which gave me the moment. "Peggy has made lots of reasonable adjustments for me and my odd ways of working and needs." 

Why does that sound odd? Answers on a postcard or in a comment - please do actually think about it!*

That just made me chuckle, while you're thinking about it

It was said in jest and taken as such, yet speaks volumes. I know exactly what that person was saying when they said it (I think!), and I know that they know I will receive that message though it may be passed over by others as a humorous aside.

What that person was saying was, Peggy's needs are not a problem. Yes, she has idiosyncrasies and may act or communicate differently from some other people, but actually nobody is "normal" and it is everybody's job to adjust for everybody else. While we may have made a number of observable differences to our sessions to accommodate Peggy more comfortably, Peggy has also made many adjustments in order to access our (reasonably adjusted) service.

In fact, Peggy does this all day every day in order to participate in the world, because people with her idiosyncrasies are in the minority and would not always elicit respect or kindness were they to walk through life entirely unmasked.

The person was perhaps pointing out that by highlighting the reasonable adjustments we may be making the person feel more "other," more different, more excluded, lesser by reason of us having to do something for them, or wrong because they don't fit the standard.

Of course that was not what the first person meant, and neither did I take it that way. We have a good relationship and they have been very helpful to me, even if I don't agree 100% with everything they say. They were reflecting on how we had worked together in a way that worked for both of us and acknowledging that that is not a given.

But I have to say I was glad of the second voice. It reminded me that while accommodating and including are positive and necessary there is something even more beautiful: belonging. 

I have a suspicion that the second person "gets" me better than any other professional ever has because they have a similar brain. Not on a piece of paper, but just as I find understanding comes much more naturally with autistic people or other neurodivergent people, so it does with this person. My ways do not stick out like a sore thumb to them. I am not baffling or confusing, a mystery to be solved or somebody to be scared of.

In belonging a person is of equal value, equally capable, equally interesting (or boring!). They are not remarkable, and I think that is the key: when we belong we don't have to make extra effort to access the things other people access. We don't feel like a problem and our presence isn't a speciality but a normality. To be a natural part of things is what the soul needs to be well.

It's a drop in the ocean and I wish there were more voices like that in services, but every drop affects the water around it and perhaps it rippled one or two people today - it did me.

I will always belong here

*For a suggestion, maybe one day I'll write about medical vs social model of disability but I can't be bothered right now

I Stole From Anxiety

Outstretched arms inviting a thief. Offering a moment.

The warm weight of trust unreserved. The moment is mine. Close my eyes, dive right in. Sink deep. Our heads together; the meaning of peace.

Warm sun on our skin, soft breeze. Distant noise like a hazy soundtrack: lawnmower, laughter, birdsong, traffic. Warm breath moving miniature lungs.

Every sensation is treasured - to be bottled, if it would. Every muscle suspended in animation to preserve our bubble.

This stolen moment so freely given heals me more than all others.