What you see and what you don’t

What you see:

A mum taking her kids to the school Christmas fair.

What you don’t see

The ride home after where I scream and scream and scream because it’s the only safe place I can do this without someone calling the police. How hoarse and sore I am afterwards.

What you see:

Me going from stall to stall like any other mum, buying child-made Christmas tat.

What you don’t see:

Me, later, curled up on the floor in the foetal position, shaking.

What you see:

A busy school hall with lots of people enjoying themselves

What you don’t see:

Sensory hell: the echoing of voices in the hall, all the individual voices and noises that come together in a great cacophony. The searing heat which makes me feel like I’m actually on fire. The smells, all the terrible conflicting smells that assault me. The terror of not recognising a face in time or not being able to process someone’s words above all the background noise. The flu-like symptoms that linger for days afterwards.

What you see:

Me exchanging pleasantries with other parents and teachers.

What you don’t see:

The conviction that I am doing something wrong, that people must be angry with me or judging me in some way. The post meltdown period of being non-verbal where I have to sign or write things down for my daughter to read because I just cannot speak verbally for hours afterwards.

What you see:

Me queueing for drink and a festive cupcake.

What you don’t see:

Me sobbing as meeting the basic needs of the kids afterwards feels impossibly hard.

What you see:

Me sharing a joke with another mum

What you don’t see:

The self-harm later which I desperately try to steer so that I don’t do any permanent damage.

What you see:

A naughty child, wildly out of control and wilfully ignoring her mum’s pleas to enjoy herself in ways other people are more comfortable with.

What you don’t see:

A kind girl who accepts that sometimes Mummy can’t cope. A girl who tries her best to comfort me by bringing me items that would soothe her. A girl whose most frequent communication (verbal and signed) is “I’m so sorry” and “I love you”.

What you see:

Me leaving a little early, perhaps looking a little frazzled as the mask starts to slip.

What you don’t see:

The days it takes me to recover from this event, the exhaustion, how we live on microwavable food and things like taking a shower become a huge achievement if they happen at all.

What you see:

Me joining in, pretending to be part of a community.

What you don’t see:

How badly this makes me want to die, how my real community are the only ones who I can allow to see the truth because it is also their truth.

What you see:

A mask

What you don’t see:


What you think:

There’s a mum doing a typical mum thing, no big deal.

What I think:

Why do I do this? Why do I try so very hard? Why can’t I just accept that doing typical mum things is too difficult and usually not worth the effort?

(Because I love my daughter and I don’t want her to miss out on things her peers get to do).

What you think:

I’m not a bad person, I wouldn’t judge someone for being disabled or having dodgy mental health. I am approachable and would try to support them, they could totally tell me if they were struggling.

What I know:

It is not safe for me to admit how bad things often are. I cannot afford to drop the mask and be perceived as not coping. Asking for help only makes me more vulnerable. Being stuck in this situation makes me unspeakably angry at the injustice of it all but I have to suck it up and just carry on letting you believe what you see because the alternatives are unthinkable.

A photo of a tacky child made Christmas bauble with glitter and starts stuck to it

Dead man’s teddy bear

After three days I make myself open the too-light box.

The sender’s name, marked clearly, meant I was forewarned

It carried a relic of a life.

A stained bear, complete with knitted jumper.

I half want to inhale and hope for smells long since leeched out by time

The disgust stops me as much as the knowledge it would be a disappointment.

The note with careless ease within:

“I rescued N’s teddy bear from being thrown out, we thought you might like it.”

Like? I don’t even remember this bear.

Where did all the others go?

There were rooms full of teddies, too many for a childless middle-aged couple.

You saw no shame in playfulness.

I’m still angry that the house was sold.

That all has changed in those rooms that brimmed with books

At the address I wrote all those letters to.

They must be gone as well.

Too many forgotten memories.

The odd snapshots stick, like the time you went to make me an omelette but scrambled by mistake.

There’s a photo in the box as well.

An old black and white one of you graduating.

All that youth and promise used up long ago.

“…we hope for rain” written as if I might care how the weather is for them

Or perhaps just for something to write and fill the space in the card.

More good intentions from those from your generation who got to spend more time with you.

I envy them that time but there’s also relief that they were the ones who did the dirty work at the end.

It was an end that took an age to come.

I wish I could believe that you are now with the other half of your heart once more.

It must be nearly 20 years you’ve been waiting to die.

You once said you envied my faith.

Perhaps it’s best you never learned there’s nothing left here to envy.

We talked often in my head, particularly on the darker days.

I liked to think we shared an understanding.

Too many ‘shoulds’ trip over each other.

The bottom line is I didn’t like what you became, that’s why I didn’t make the effort.

That empty hulking shell of human flesh waiting patiently to rot.

The piss smell that even the most expensive residential home in the wealthiest of countries still couldn’t quite mask.

The lights went out long ago, when she went before you.

I remember the light in your eyes in the old days.

How many still remember those days? The handful left ebb away a little each year.

You didn’t just love me, you delighted in me.

It made all the difference.

As I clack away here decades later I still take hope from your encouragements

You always praised my writing so perhaps it’s not all so bad as it seems upon rereading

These disjointed thoughts in prose with pretensions of being poetry.

You would have delighted in my girls too, particularly in the cheek.

I must try to do this more.

A dirty teddy, an old photo and an inane card.

That’s all that’s left.

Now I must return the hollow niceties with a thank you note.

Like a bug in amber I preserve my memories.

You two were the only consistently happy memories from my childhood.

So many books shared, the ways we played with words.

You still stay with me when I read.

I’m probably the youngest one left who loved you well

I expect I shall also be the last.

What is the proper place for a dead man’s teddy bear?


I carefully pack the bear back in his cardboard coffin

And put it with the other things precious enough to keep out of reach and out of mind.


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The potholed bumps announce I am back here once again

Back on these paths I’ve shared but more often walked alone

So many moments of meaning here:

Shrivelled last year’s acorns that rattle round my boot

Tacitly I greet the landmarks only I would know

This dear little holly just by that unusual bole




How often here, with a child or two in tow

To exercise the dog and walk imbalanced on every fallen log

Sculpting work and pleasure plans afoot

Each tree as known as faces of the old friends they have become

All those ants that tried to bite

And nettle stings, knee-scrapes and fights

That time a fungus looked just like a witch’s nose!

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The chiff-chaff that I learned to tell apart

The squirrels chased and great galoshing puddles jumped

Soggy picnics and “don’t you dare touch that!”s

The time I slipped just here and hurt my back

The leaves we tried to catch in vain

The den I never could quite fit in



This bank, that patch of moss

All the memories which signal loss

Mind that root, the one just past this fallen tree

“Please tell me when you need a wee!”

The times the dog would not come back, no matter how we called

The stormy days where creaking trunks harried me along

The hours and hours measured on the Fitbit app

Can ne’er do justice smell of sap


The various hands I’ve held along the way


Those real as well as real to me

The wind and rain that sang their sovereignty

The forgotten small talk at crossed paths

The ‘swamp’ where we say ogres live

And sticks for wand and broomstick play

This fork comes out by the holly I picked that year

(and pricked myself in equal measure)

The brief enchantment of bluebells by the thousand

And better ken of why in times long past the ice defying greens cried “MAGIC!”



Three times Dog has been bramble bled and rushed off home

And crossly kindly nursed to health so that we might return

Sweet chestnuts’ prickly cases strewn

And ditches full of autumn leaves begging to be rolled in, buried in

Scooped up and thrown with a confettied exuberance of joy


The sorrows sobbed and days when delight bounced in every step

Childish glee at cracking icy puddles


The first times I explored this way

Dropping mental breadcrumbs lest I stray

The good friends we found those owlets with


The days of anger, stomping its staccato out

The cool relief from summer’s ray

The very air of all those days and days

The footsteps just a little fraught in winter’s race against last light

Catkins and acorns gathered by little hands

To be later glued into a joyfully pointless mess



The gate where you stood and watched me drive away

The trees still speak of that sad day

There must be an injustice in all I have taken from this place

The solace it has freely given

How many times I’ve stayed “just a little longer”…

(Can’t I stay? Must I really go away?)

…To revel in this constant moment which is above all other

The joy of days when watches ticked away unchecked

This place: a playground; diurnal duty; sweet relief from life

Those fairy toadstools that we saw

(another “don’t touch that!” implored)

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Butcher’s Broom, I know you too

You live near the possibility of being

Without restraint or fear or shame


The thoughts and thoughts and plans, half realised, half forgot

The details plotted in this space, sketches of my future paths


I know you woods

I know your avenues of twisted barks

The rustle of the leaves caressed

That leap I make across the stream

That tree askew, yet wonderfully so

These little gems I’ve come to know

I’ve taken pride in sharing you with those who’ve walked here by my side

I’ve led a few to joy this way

For ‘wonder’ just follow this brook

(In wintry times at any rate)

Now my time to walk these paths is poor

There’s a new path leading me away

Though always going full circle here

I have also come so far

Always so much detritus from the forest floor

That sticks to clothes and reappears much later

In the most unlikely places



This time can only be of itself:

Future trips down memory lane will never be quite the same

As the vast banks of memories I’ll carry away with me

Such memories are not without weight but the burden is an honour

I have lived and loved in this place

Lived and loved so well.

The potholes bid me a bumpy farewell as I go on my way again.




Whistling in the rain – an autism anecdote guest starring Kipper the dog

I was going to tweet about walking the dog in the rain, about the joy of being able to go out and enjoy the countryside at a time when pouring rain meant that most people would be staying indoors. I was going to say it’s not that I particularly like the rain, it’s more about the lack of people. Then one thought chased another as they do and it became evident that I would need more and more tweets to explain myself and then I would feel guilty about hogging people’s timelines and so the only solution was to write it as a blog post. This may well be an example of autistic over-thinking, another tangential example is my friend, undiagnosed but I have zero doubt that she is ‘one of us’, who went to great lengths to explain to me this week that she had not copied me by having her hair cut short, it was that it was getting in her way and so on, it had clearly been worrying her that I would somehow think badly of her for choosing to cut her hair shortly after I had decided finally achieved getting mine cut. I actually hadn’t even noticed that she’d had it cut! I digress.

So I was going to say I don’t like rain that much, thinking about it however, there are a lot of things I do like about the rain. Many of these are sensory in nature. The sound of the rain is soothing, I am not alone in this as the existence of many YouTube videos testifies. The pitter-patter (surely one of the loveliest onomatopoeic words) of rain on my hood, on rooves and so on isn’t so dissimilar to white noise. Rain also means that the sky is likely to be grey and overcast, qualities not generally appreciated by people but for me a welcome relief. I’ve been struggling increasingly with (or perhaps increasingly noticing) glare and high contrast light. The muted light of winter is much more suited to my visual processing – I am currently awaiting assessment for Irlens syndrome, this may be a factor here. Even the way my sodden clothes clung to my skin was pleasant in a way not dissimilar to my weighted blanket. I would like to invest in higher quality waterproof clothing but Money is an area of life I’m failing at impressively these days. The smell of rain on the scorched ground is also a pleasant one for me, we haven’t had any rain for weeks and this summer has been warmer than usual. I’ve been struggling a lot with the high temperatures. I’m bored with my own puns about summer putting the ‘melt’ in meltdown, umpteen meltdowns later it’s just not funny anymore. I’m actually looking into moving home to somewhere with a generally slightly cooler climate – The Move is something I’d like to write more about in future posts.

Thinking all these thoughts and others about the rain made me think of one of P’s favourite books.  I did promise Kipper would be making an appearance in this post, partly because I think this blog would benefit from a few more pictures. Kipper’s Rainy Day by Mick Inkpen (what a fabulous name for a writer!) goes like this: “Kipper loves the rain because rain makes puddles. And puddles make… a splash!”


Let’s ignore the grammatical issues of starting a sentence with a conjunction… ok I can’t do that, let’s just state that this is clearly poor use of grammar but the book has other redeeming features like cute animals. The law of sod states that having criticised somebody’s grammar I will now make 53 grammatical errors which will be pointed out by other zealots. As a friend of mine is fond of saying (this may in fact be a quote from somewhere): the price of pedantry is constant vigilance! I digress again. The book is a lift-the-flap book and goes on to describe several animals who (allegedly) like the rain.


The story culminates with a cat who does not like the rain and a statement that the thing Kipper likes best about the rain is getting dry again. I have some issues with the idea of getting wet so you can enjoy getting dry, it seems rather like Allen Carr’s analogy of putting on too tight shoes just to have the relief of taking them off. My daughter however loves this book. I therefore know it by heart. She particularly loves the cat being sad about getting wet and then being happy again as Kipper dries him. I’d rather like to add a page to the book – “does anyone walking the dog like the rain?… This autistic does!”

I’ve not been having a great day. I’m in that awkward place where things aren’t bad enough to be labelled a ‘crisis’ in my head, things are just averagely bad. This would be an ideal time to draw on friends’ support but communication is also harder right now (as opposed to when things are Really Bad when communication is impossible – ha!) Yesterday, despite being very much in this not great mental place I managed to do some things which were hard. I went to a medical appointment in a new place with unknown healthcare professionals – always going to be stressful. I also took the dog for a walk on the beach, somewhere I usually love but has been out-of-bounds over the summer as there have just been too many people. I don’t cope well with the public. I was lucky yesterday, despite the weather being sunny there weren’t many people on the beach. This is what lead me to making the most of the rain today. There’s a real safety for me in rain, the more intense the rain the lower the probability of people being out in it. I’ve had a lot of bad experiences with people, strangers, shouting at me apropos of things I can’t begin to fathom, I don’t understand why this happens to me so much. I have so much anxiety about going outside, even in my own garden. Another key factor in wanting to move is my need to live somewhere far less populated than where I am now. It varies with how well I’m doing but often I feel leaving the house is putting myself at risk, at unnecessary risk. I do however love being outside, particularly on the coast or in the countryside with the dog, he is good company. The fresh air and exercise are good for me physically and mentally. There’s also the responsibility of dog ownership, I am compelled by this duty to walk the dog at least once a day. I know many people don’t bother and the world will not end if I fail to walk him but I love him and walking him does me good – generally, so long as people aren’t unpredictably awful.

So I have achieved a small thing, I have ticked the boxes of walking the dog and getting some exercise today. This makes me feel a little less terrible. It doesn’t solve all the things which were upsetting me earlier today but I did at least take a break from them which is something. Dog walking can be good self-care for me. I even caught myself whistling as I walked along. I don’t walk with the typical gait of a person walking in the rain – head bent, slightly crouching, trying to escape every drop. I relish the safety of being able to go out and I hold my head up with a genuine (as opposed to when I am passing) confidence. I was whistling contentedly in the rain for a while, for today that is enough.


(Pic of the faithful hound while walking on holiday recently).

On Naming Names

I stand and watch the other parent call their child by name as they encourage them in a park: “Come on Isabel… well done Isabel!… Isabel where are you hiding cheeky girl?” This is a thing I cannot do. I can physically talk, I have verbal skills, I don’t stutter, externally I am usually able to pass for neurotypical. Yet I cannot use my daughter’s name, the word is there in my head and yet it’s so hard to get it to pass my lips. This leads to all sorts of linguistic acrobatics until I find I simply have to use it. The responsibility of choosing a name for my child was particularly hard for me, particularly as there was a time limit on this. I find using her name is not so bad somehow if I’m doing something like taking her to the doctor and checking in for the appointment, I expect to be asked for her name and that I can manage, perhaps because it is compulsory.

It’s not just my daughter’s name I have this issue with. For me using people’s names feels similar to maintaining eye contact, I can do it, I can force it but it’s never comfortable. Some autistic people have described making eye contact as similar to trying to look into the sun. Nicknames or things like job titles or the role the person plays in my life feels somehow safer ground, something I have a little more control over.

It was in fact this issue with my daughter’s name which lead me to realise I was autistic. (Forgive me if I’ve described it before on this blog, I don’t tend to reread posts once posted). I was reading Look Me In The Eye by John Elder Robison. It was by no means the first autistic autobiography I’d read, I considered myself pretty well clued up on autism already. John described how he couldn’t call his new baby brother anything other than the nickname he’d given him – ‘Varmint’ if memory serves. This rang such a resounding bell with my experience with my then baby daughter that I seriously considered for the first time that I could be fully autistic myself. Until that point I had believed that I was just particularly empathic (!), that I could put myself in autistic people’s shoes fairly easily because of my experience with depression and anxiety.

A few of my ex partners complained that I never used their name. I’d always use terms like ‘hun’ or ‘love’ instead, never the name. Going out on a limb and making assumptions about how others might feel here – I think it’s a bit like if I were to call my mother by her first name instead of ‘Mom’, that would be weird for most people right? (Yes I’m a British person who says ‘mom’ instead of ‘mum’,  it’s because she called her mum ‘mom’ as they lived in a ‘mom’-using country when she was growing up, I do however always refer to her as my mum as this is what people expect).

So people end up with different labels which I use to describe them: my childminder, my friend who is a teacher, my pregnant friend, the friend I go to the pub with and so on, bizarrely referring to someone as somebody’s something like saying ‘Bob’s friend’ or ‘Mary’s sister’ isn’t so bad, a further degree of emotional separation from the name perhaps…  For the most part this doesn’t bother me, I’ve far greater problems than this strange inability to use people’s first names and I’m well used to finding workarounds. It does bother me with my daughter though. I know it’s ok for me to say “Well done darling!” or “Come here you little hooligan!” instead of using her name, I’m sure there’s many other things which are far worse about my parenting. Yet it niggles and I have a sort of envy of people who can so freely call their child’s name across a playground.

I have some hope. As with Robison my nicknames evolve over time – a quick google tells me I was both right and wrong, his kid brother was originally nicknamed ‘snort’ and then later ‘varmint’.  My daughter whose original nickname was ‘Piggy’ has now become an approximation of her real name which she instigated as a way to refer to herself while she was learning to talk. Now she has learned to say her name properly but the approximation has stuck. I’m aware it’s not her real name but it’s as close as I can get for now.  I still refer to her as P online, mostly for ease and anonymity and she is still Piggy with friends who have come to terms with this nickname – some people have been very judgemental about this name, saying it’s unkind etc, like I had any choice over what my brain chose to label her, it suited her as a baby who was quite the frequent feeder.

These issues of identity mirror my own in some ways, I take pains to protect P’s identity online as I do my own. There are some trusted people who know my real name as well as this alter ego, they are few and I plan to keep it that way. The anonymity gives me a freedom to be more honest, however unsavoury that can be at times.

On being ok


What is this ok-ness thing of which you speak?


So I’ve spent much of the last 10 months being mostly not so ok. Sure there have been some good times in between the bad but for the most part it’s been a struggle. I write mostly about the bad times, it’s a way for me to process and I hope that sharing my experiences may resonate with others. I’m sure I’ve said it before and I’ll say it again, there’s a tremendous comfort in being in the company (including virtual company) of people with similar experiences, I think of this as ‘same-boatness’. Now I’m doing ok I want to try to write about it, try to somehow capture it in the hope that when my mind is full of shitfulness and the good times are impossible to conceive it will somehow still exist, somewhere in the ether.

I’ve been told it’s very hard to write happy poetry, perhaps happiness is just difficult to express or writing is more of a tool for coping with the negatives. I spend so much of my life struggling to survive through one internal crisis after the other. I’m not convinced I’m much good at being ok, after all it doesn’t seem like I’ve had much practice and it never seems to last for very long.

What do I even mean by ok? I’m feeling pretty good about myself at the moment because some good things have been happening in my life lately. Work I’ve been putting into things has paid off. There’s a real danger of this sliding into self-aggrandising narcissism, the over confident ‘king of the world’ side of me which can feel so good after all the self-hate but is not something I particularly like in myself and I don’t imagine is much fun for those around me. In a life of extreme emotions it’s hard to find a balanced middle ground here. Self-love can also become something to criticise myself about and rapidly dissolve into self-hate.

I keep coming back to the word ‘enough’, in all aspects of life I have to fight the perfectionism or apathy and try to find a middle path to being a good enough parent, working hard enough, being satisfied enough with what I can achieve despite the limitations.

Have you noticed how despite attempting to write about being ok I keep coming back to the negatives?

Perhaps being ok is more about the absence of feeling terrible? Perhaps it becomes more manic and high because I’m aware it’ll be short lived, worse times will always follow and this is outside of my control. I’m not sure I know how to be calmly happy. Happy is a bizarre concept, I don’t really understand it.

How can I express my current ok-ness in a way that I might believe when times are worse? In the bad times I try to congratulate myself on the minor achievements, often just surviving another day without a meltdown. I’m not sure I’m even comfortable with being ok, I’m very used to depression and anxiety being central to my existence, if nothing else they are familiar, like a family member you don’t really get on well with but you’re so used to it feels odd when they’re not around.

It’s not that I’m any less autistic than I am during the bad times but that I am more able to cope and autistic traits are toned down a notch. So I’m sleeping better, getting more exercise, more able to cope with things like changes to routine, sensory stuff is less overwhelming, I am more able to control the overthinking and let things go, the recovery time from socialising is shorter… it all gets very chicken and the egg as it’s impossible to work out the causal direction here when all these things are so entwined.

So what happens next?

It might seem odd planning for how to cope with the good times. I see it like muscle memory in sport, when you play well and try to work out what it was that created that result so that you can replicate it in the future. I know that much worse times inevitably lie ahead, that is just the way of things. I still need to do a lot of self-care to maintain my current ok-ness. Often I forget this, get caught up in blissful obsessive overdrive and then am suddenly wiped out. So I have to make a conscious effort to continue monitoring my anxiety levels, sleep etc and adjust my expectations accordingly. This is by far the longest period of ok-ness I’ve had in nearly a year. I’m interested in seeing how long I can maintain it and seeing if I can notice what tips me back into the hugely negative spiral. At the moment I have much more control of things in my life than is usual (again is this the result of being less stressed or am I less stressed because I am more in control?)

I feel a little disconnected from my friends who continue to face daily battles which are currently far worse than my own, I’ve lost the perceived reality of the constant negativity. Logically, I know, I remember how it feels but I think like any remembered pain the memory isn’t quite accurate, I don’t get it like I do when I’m in that moment – psychological self-preservation here I think, forgetting the pain is a handy skill. I know that there’s no way I can bridge the chasm between my ok-ness and my future (or my friends’ current) shitfulness. I can’t lead anyone away from that darkness but I can try to testify that light exists, at some points things are easier. Having said that, I know that in the shitful times this ok version of reality will be impossible to comprehend. Just as now I look back on previous posts splurging pain all over the page and cannot really fathom it, the positivity will also be hidden from me again if I come to read this post during a darker time.

So for now I am ok, perhaps even bordering on pretty good, it is enough.

The bad fight

Punch drunk I reel, stagger, desperately try to regain my footing. I’ve been fighting for a while now, I’m not sure how long. The impact of previous blows smart still as more come in, buffeting me from one side to the other. Somewhere in the distance is rest and balance, they seem far off, hazy, not quite real. If only this were all real, if this were some physical illness – what a terrible thing to wish on oneself – rather than the silent, invisible fight against the Black Dog and Rabid Wolf tag team who personify my depression and anxiety. Being able to pass for someone who’s not completely fucked in the head is just another burden, a heavy sack of responsibility that I can’t put down. I don’t deserve to share the load with those who care about me and they don’t deserve to take the strain. I cast about for the solidity of reason, searching for causes and explanations – if only I hadn’t done this, perhaps if I had done that I wouldn’t be in this place again? Reason however is a mirage and as I frantically surge towards it it becomes another mockery, another defeat. I don’t want to fight any more. I want to give in, to give up and lie down and die. I punch myself repeatedly in the head, or at least I would if only I had the nerve. The urge to hurt myself becomes another whip to torment myself with, the self-judgement of others’ judgement bearing down and suffocating me. I let my child pull my hair, she laughs, there’s no malice there. I want to say “I’m sorry darling, sometimes Mommy feels so sad and wants to hurt herself”. I hate that in the future she’s likely to have to endure the fallout of my battles. I feel guilty for hoping that her sweet kind nature might be something I can lean on in future, that after a fight she’ll bathe my wounds and hold me while I cry. She deserves better than that. This is the way things are.