This weekend I spent more time outside than I remember having done in years. Highlights included time in the woods with my son at the excellent Tori’s Forest School, down my new permaculture allotment (photos to be added when there are some plants in) and an afternoon at ‘The Land‘ in Little Eaton a beautiful windswept space with the most fantastic view of Derbyshire. Signs of spring are appearing already… here are a few photos of the best of it along with a very daft cat.
In the last week, I have realised that firstly I am getting old and secondly that I am getting excited.
Both are interlinked so I will begin with the getting old bit…
I have had various allotments and growing situations over the last six years which have all become unviable for a number of reasons; distance to the site after we moved, friendships ending with people who I held and created plots with. In the summer of 2020, I become aware of a very tucked-away allotment site about a seven-minute walk away from my new house. The site is one of only two directly managed by Derby City Council, meaning there is no site committee (people on the sites I have formerly been at who have too much time on their hands and not enough to occupy it with other than gossiping – hello if you’re reading this!).
There are upsides and downsides to this arrangement. There is much less interference but also a much greater emphasis on you doing things for yourself. Arranging materials, mulches and other stuff usually organised by site committees are up to the individual plot holders. We have a fabulous liaison with the council, but the individual in question does this more from a love of the site and a desire to see it continue and thrive, rather than any power trip they might benefit from.
I reserved myself two plots, with a total area of about 320ish square metres. When I got it the whole lot had not been cultivated for between four and ten years. It was covered with five-foot high grass and in the worse area bindweed and brambles. I managed most of the preparatory work I wanted to achieve which mainly involved a love affair with a petrol strimmer, an intimate relationship with my local dairy farmer and twenty tonnes of cow shit followed by rolling around in the mulch with a huge amount of weed membrane.
Shortly after achieving all this, disaster struck both personally and globally. The covid pandemic hit which of course impacted upon everyone, but which [read covid infection] also stopped the medication I had used to control my mental health challenges successfully for seven years to stop working so well. I won’t go into details now, but needless to say, between July 2020 and the current time it has been pretty hard. I have had four inpatient psychiatric hospitalisations and a lot of other issues to deal with in between these pretty dark lows.
Luckily, things seem (fingers crossed) to be sorting themselves out again, so I was in a position to pick up where I left off when I acquired a greenhouse for free last July. The erection of this fabulous item took place in October 2022, about two weeks before my latest (and hopefully last for a while) inpatient admission. Unfortunately because of my untimely mental health crisis the last and crucial job of securing the greenhouse itself to the oak sleeper base was not completed. Plans were hatched to do this two weeks ago, however a short trip to the lottie revealed that the cold weather had caused the structure to slide off its base with one corner resting on the mud next to it. Last Sunday was spent with my friend John, the greenhousemeister and my beloved moving it back into place and finally getting the frame and base attached to one another with nails rather than prayer and sprinkling of hope.
So, how does one express one’s undying gratitude to a faithful partner who gives up their Sunday to resurrect a glass house? By buying him seed potatoes of course! Standing in the queue to make these purchases (different to my own varieties of course) I reflected on the fact that in my twenties and thirties I might have bought aftershave, jewellery or even a nice dinner, but now we are resorting to seed potatoes and other horticulturally-based items to express our love and appreciation for one another.
That’s how I know I am getting old, but I am rather enjoying it to be honest.
The excited bit is related to simply having a functional allotment. I have beds laid, some garlic and onion sets in already, but am quietly spending my dark January evenings plotting (pun intended) my bed layouts and seed purchases. Sitting at a laptop with a spreadsheet open to work out what I have, what I need and when it all needs to be started might be considered very sad, but I think it’s fabulous.
So, here’s to getting old, getting excited and better weather in the near future.
A short piece of writing that I completed for the Beyond the Spectrum Writing Group organised by Writing East Midlands:
The stone is smooth and round and fits in the palm of your hand. Its surface is flecked with silver flashes that spark when the light hits them as the stone is turned. Tiny black lines intersperse these. The stone feels warm and substantial and strangely familiar. A faint salt smell echoes from its surface, like the breath of the sea from where it came.
The spirit living in the stone was a God, an old God, of a mountain, revered by tribes many millennia ago when he and his stone were still joined to/in/with the power and constancy of the rock from whence they came. The mountain is now long gone, as is the memory of him in the minds of man. Every so often though, the spirit of this long-forgotten God and his stone is cast onto the seashore and the memory, of a memory, of a memory of them, reverberates in the mind of the person who finds it.
The God is the stone, and the stone is the God. They are indistinguishable from one another. As the stone is diminished, so the spirit forgets. As the water wears him away, so he joins his kin in the sea, his God brethren who once held sway over man in the many corners of the earth, before they tamed the earth they revered. When hot lava tears were cried over the land, causing the death of so many of their followers.
The stone is dressed in memories; those of the God and the humans who touch him and his stone. Through them and with him they join, momentarily, and remember the boundless glory of the rock that thrust up into the sky, tall and unconquerable, and even from the before time, when the reptiles walked the earth and rode the air. Even the Gods at the zenith of their might struggle to remember this time, from before, when they were strange and liminal between the space of mineral and divine consciousness.
So the stone and the God are rocked gently by the currents of the sea, moving and swirling with the water, faintly aware of the growth of humans across the face of the earth whilst they sleep in their watery cradle on the ocean floor.
Every so often, he is found, and he remembers…do you remember? Have you founds him?
Hold him to your heart, hold him to your ear. Hear through the sound of the waves to the silence beyond. The silence of the rock. The infinity of the sand and water that was once a mountain which you can pour through your fingertips in a million tiny grains. The rock becomes the limitless sand. Humans become the limitless teem. We all return to the earth, to the rock, in the end. We all become one with the God of the Mountain. We all remember, just like the stone that is smooth and round and fits in the palm of your hand.
It’s been a while since I posted here, not because of a lack of good intentions but simply because there was barely enough time to breathe last year, let alone find the time to update my website.
I returned to work at the end of 2020 to begin a PhD at the University of Nottingham with the Horizon CDT. All was going well until the medication that I had used to control my mental health stopped working shortly afterward. I was plunged into a hell of dealing with both a heightened presentation of the kind I hadn’t experienced in years as well as the turmoil of trying to find an alternative means of managing it. My reproductive cycle and mental health are inextricably linked. If I ovulate I go mad – experiencing two weeks of irrationality every month within which there is usually five days of being actively suicidal. Three different types of hormonal drug later, and two stints in hospital for my own safety I finally found a new pill that appeared to be working and things settled down again.
Being a good citizen I undertook to have the Covid-19 vaccine in March 2021, without realising that emerging research was indicating that this, in a small percentage of women, affected their hormonal contraceptives. Of course it did in my case. After having a stable four years I was thrust back into the midst of trying to deal with the monthly hell of coping with the madness and instability, knowing the pain and grief this was causing my family as well.
June 2021 was a landmark. After exhausting all the expertise in Derbyshire in both mental health and gynaecology I was referred down to a specialist clinic in London led by the amazing Dr Michael Craig, who is the only clinician to sit jointly as a fellow on the Royal College of Psychiatrists and the Royal College of Obstetricians and Gynaecologists. Dr Craig identified that I sit on the bipolar spectrum as well as the autistic spectrum, which was key to unlocking what had been going on for me for the last ten years.
My menstrual cycle hormonal changes across each month are what trigger the bipolar presentation. I have apparently lived with this since I entered puberty however it became much worse since I had my son in 2012. What really hurt at the time was the fact that Dr Craig explained that with the right management it probably would have been possible for me to have more children safely. There was a period of grieving I had to work through in order to deal with this fact. I chose not to have more children because, despite not knowing what I was experiencing, I knew instinctively there was a risk of things becoming worse again. This would have jeopardised the well being of my family and my very young child, which I simply could not do.
Learning more about what my mental health challenges meant for me, statistically speaking was incredibly difficult. I experience rapid cycling (switching between hypomanic, lucid and depressed sometimes on a daily or even an hourly basis) and a mixed presentation called dysphoric hypomania. This places me at a much higher risk of accidental death because of self-harm and suicide as well. This is in addition to the risk of successfully committing suicide that autistic women are subject to, a reversal of the usual trend for neurotypical adults where men are most likely to successfully die at their own hand. These are the realities of the data and literature that I interact with as a part of my studies, only unlike most academics I live the reality of this research in a way that many do not.
After a particularly challenging three months between April and July 2021 when my son’s school placement failed I ran out of every personal resource I had available to me. My family caught covid in July and after coping as best I could with the luteal phase bipolar presentation for each of the four months since my vaccination I experienced the most intense episode yet whilst infected with the coronavirus. The feelings I was coping with were so intense. I tried to seek help but was told that there was nowhere I could go for support until my self-isolation period had finished. Three days after this in an attempt to manage the deeply intense and distressing feelings I had, whilst on diazepam, I drank alcohol as well. The end result was a weekend in intensive care, part of which was spent on a ventilator because my respiratory system collapsed. I was sectioned, awaiting assessment and ended up spending nearly a month away from my home and family desperately trying to get better.
I came home in September. My son was starting his new school and despite feeling incredibly fragile I hoped that things had turned a corner.
The reality proved quite different.
The school who said they would be able to support my son in his education failed abysmally. There were constant issues. His one-to-one, specially trained support was never recruited. Simple items required for his sensory diet took over a month to be put into place which only happened after constant chasing. There was no plan to get him into school full time.
I never really got any time to recover during those last three months of 2021. In desperation I tried a tiny dose of a mood stabiliser recommended by Dr Craig, even though the risks of having an extremely bad reaction were high, based upon past experiences of medication I had tried. Even with amazing support from the crisis team in Derby, after a week of taking this I was unable to keep myself safe and was placed under a Section 2 of the Mental Health Act for my own safety. I spent another three weeks in hospital all together recovering.
Despite this being a distressing period, the time in hospital gave me an opportunity to pause and re-evaluate what I needed. Getting fed up with waiting for the NHS to provide some talking therapies, I found an amazing practitioner a five minute walk from my house. I was able to get some rest, revitalising myself in a way that had simply not been possible at home for the previous half year. Of course all this was a pressure for my partner who coped amazingly well, caring for our son at home. I came home with some mental space and physical energy. Christmas was spent together at home which was a joy; a respite for us all to spend time together as a family in a way that had not been possible for a long time.
Between January of this year and last week things had begun to stabilise. I was back at work full time, my son had started an EOTAS package building up a relationship with his tutor after leaving his second mainstream primary. Things were pretty secure. I felt content and like problems were settling.
Unfortunately the tutor with whom my son had worked so closely unfortunately had to leave at very short notice. This arrangement had been the lynchpin of the plan that was supposed to carry us into the new school year. Everything has once again collapsed and my mental health followed shortly after.
The time and energy his tutor and I had invested in settling M and finding out what he needed had all come to nothing. I experienced a major trauma reaction – I didn’t know how on earth I was going to start again at the beginning and pick up the pieces of this mess whilst carrying all the other responsibilities I have. Despite my best efforts to manage what was happening I started rapid cycling again and could see an impending crisis of the magnitude of both those I experienced in 2021.
So, I reach the point where I am sitting writing this. It is 0345am on the 4th July 2022. I am in a crisis house. It was my fortieth birthday last Friday, which I spent here away from my partner and our son.
Despite this, I am feeling hopeful.
The new knowledge that I have about my mood has enabled me to take positive steps to avoid a crisis before it reaches a boiling point where I am really at risk. I have survived and thrived in the last ten years of my life in spite of all the challenges and heartache that I have experienced. Things have been incredibly difficult for my partner and I. There were many times I wondered if and how we would get through the problems and difficulties that we have faced together since our son was born. Yet we have. I have had doubts and acted in ways that have hurt my partner terribly, but we are still together, still fighting for one another and still loving each other.
I enter the next ten years of my life better supported, with more understanding of myself and a firmer grasp on the person that I am than many people manage to achieve in a lifetime. I am proud of what I have achieved. I am more proud of my family for coming through all this with me and in particular big M, little M’s dad for being an amazing parent and partner, there holding it together at the times when I have been less able to.
Part of what has been instrumental in my ability to continue was a growing interest in Buddhism. Although I don’t (yet) consider this to be a personal religious practice, the idea of living with the present moment, living with adversity and finding joy in the most challenging of situations have been a significant contributor to my recovery. I have been able to conceive of my experiences as something beyond a medical diagnosis and manifestations of illness. I truly don’t know who or what I am. The older I get, the less I realise I know about the world and the people in my life. The not knowing makes the anticipation more tantalising. I am still excited about the journey I am on and grateful to have the love and support of the people I share it with.
I hope I can have as much joy in the next ten years as I have in the past. I look forward to the new adventures life will throw at me, watching my son grow into a man and growing closer to the other man that I have loved for the last twelve years.
About my allotment in the autistic writer’s group I am currently participating in/ I’m really pleased with it 🙂
Birdsong sprinkled in the background of the morning.
Blue vaulted above their heads when they looked up.
Brown hands and feet from the earth, brown faces and skin from the sun.
Calm; that was all they could describe at the time.
Green, the colour of their eyes, that met their eyes.
Music to get lost in, so needed at this time.
Peace, quiet and time alone, strangely essential under current circumstances.
Productive in a way that doesn’t involve tick boxes
Shit, mountains of the fucking stuff.
Silence.
Spade; an essential implement, but the process sometimes make you feel like one.
Vegetables, so delicious to eat.
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Virus-free. www.avg.com |
Last time I posted I wrote about my overall experiences of using space more flexibly; a process I have undertaken since we moved house and into a new property that was slightly smaller than our last home. The walls were a lot higher, so it gave me an opportunity to think about how we use space and how to use it to better effect. Originally, we built up, utilising higher storage options and creating a bespoke bunk bed for my son out of reclaimed scaffolding planks to give him full access to the floor space in his room.
Most recently I have moved away from the idea of different rooms have a designated purpose, often assigned by the type of furniture in it. Houses have bedrooms, with beds in, kitchens and bathrooms, (whose function we can’t really move away from), but otherwise part of the consumption driven approach to housing in capitalist societies is to keep buying a bigger house with extra rooms, all with a designated function. Therefore you end up with a couple living in a five or six bedroom property, with a games room, laundry room, lounge dining room and mud room for example.
We’ve made the choice to use our home more flexibly. We have our television in one of our bedrooms, whose occupant prefers to watch this to relax and so the TV did not dominate the living space downstairs and overall layout options available within it. As a family most of our living takes place upstairs, but our son was struggling with a lack of space in his bedroom to play in, so he ended up with what would traditionally be the lounge/diner as a play room. In the future, this space may well be converted into a bedroom as well. Given we have multiple family members on the spectrum, personal space for downtime, hobbies and special interests is more important to us all that a space for collective socialising. The one bugbear at the moment is a dining space. I’m not happy without, one but other family members don’t feel they could manage with eating upstairs converting the smallest current bedroom. I guess that time will tell what the greater need will end up being.
Within my own personal space I have embraced the idea of furniture free living quite radically and have found it to be a great release from constraint. The space taken up by a bed is massive in terms of the lost opportunity to move and play in different ways.
At the moment I have got rid of my bed, choosing to sleep on the floor Japanese style instead. My desk and kneeling chair has gone and has been replaced with a squatting desk and winebox stool. The main pieces of furniture in my living space comprise of storage, a really important feature given that the benefits of using space flexibly are maximised when things are packed away and not left around the room.
Instead, the new room we gain becomes an exercise and rough-play gym, sleepover space, hooping studio and sensory playroom. Toys and props are left around as provocations for movement and we have a range of accessories to use with our ceiling anchor points which are invaluable for sensory breaks in winter when the weather is crap. Side tables are made from wooden crates which can be moved about to accommodate a whole range of activities as well as stacked to add a degree of novelty as moods change. Rugs and cushions make using the room during the day more comfortable whilst still gaining the benefit of different opportunities for the body to move and be used in many ways. Simply banning chairs and other furniture which only allow the body to lower to thigh height makes such a difference in terms of flexibility and muscle strength. I’m also pleased that my son is adopting some of these changes, such as sleeping on his own floor at times. Not only do they bode well for his future health, but can make a real difference in the perception of what is ‘needed’ and what is optional across a life time of buying things, or not as the case may be.
I am finding that I am getting healthier the older I get, mainly by removing many of the trappings of wealth and convenience we indulge in, in western cultures. I’m thinking about writing about these in the coming weeks, as lockdown challenges me to think differently about my life and space.
Sitting at the end of probably the worst week ever that would have been possible to begin a year with. Four days in, we have entered another national lockdown, with the children off school again, after having been back only one day.
I am sitting here getting angrier and angrier with the issues I am experiencing with technology. The laptop I have been sent is not working with the second monitor that I usually have, the wifi drivers keep failing and to top it off the whole house’s internet connection has been off since this morning.
I realised, rather than getting frustrated (which I was and it’s not good for well being, resilience or mental health) I stepped back from the situation and realised that despite my reliance on this technology and connectivity, I did not depend upon it to actually do my work. I am thirty eight, and although I had internet access consistently from the time I was studying for my ‘A’ levels and first degree, it was dial up which meant that the pages took a long time to load, the reliability of the service was questionable and the opportunity to store information in the cloud and use this facility as a dump for data and information was non-existent. I still managed to study, produce some amazing work and get a bloody good mark though.
Perhaps this situation is the answer I am looking for; to explore more focused ways of working for my PhD though. This experience is the prompt that I need, the pause to look at my situation differently.
What I do have access to, even with no wifi:
The truth is that I am still better connected and equipped with all this stuff than I ever was for my undergrad degree, even without a wifi connection.
It’s funny how your perspective can change when you start to think about a situation differently.
One of the things that I wanted to and certainly need to work on, is thinking about my reading and writing time; finding time, staying focused and being consistent. There are umpteen apps for ‘improving’ your productivity and quality of output in these areas, but the truth of the matter is that people have been undertaking these activities and doing a pretty good job of them for centuries without the ‘advantages’ of digital technologies and connectivity to aid them.
Perhaps the answer that I am seeking is actually staring me in the face and I have to switch off and reduce the level of technological ability that I have. I need to appoint days where I begin with my phone and laptop on aeroplane mode so that I can work without distraction and interruption. Both roam research and google docs have local functionality that I have make use of to avoid the onerous task of remembering to upload my work, I can still take advantage of some of the digital tech’ that enable local versions of themselves whilst still enjoying the advantages of the efficiency of these products and services. This flexibility is what I can exploit to return to some of the working practices of my twenties.
Even not having my monitor working has meant that I am working differently. I’m not chained to my desk and have spent more time organising myself on the floor. Even writing this blog post has meant that I have thought about the possibility of lowering my desk to make it at the height at which I can work at it squatting on a very low stool or even self supporting in a primal squat at times.
Update: I decided to get rid of my kneeling chair and lower my desk and overall I’m really pleased with it. I’ll definitely be posting some pictures of my work and living space soon.
Update 2: This process of reflection was really useful and has made some quite significant changes to my work and living space.
I am a late identified autistic individual who was born biologically female and remains so, but identifies as genderqueer. My sexuality and, following on from this, relationships, have been diverse exciting and often challenging because of the path less trodden that I have chosen, but also because the difference of autistic experience I that have can create confusion and conflict. Often I have not understood why I do and enjoy the things I do. I have only that they felt right.
Most recently I have found the words and language to express more coherently just what I am sexually and in relationships; genderqueer and polyamorous. This is my own language. I cannot claim to speak for everyone who is autistic. Merely I hope to offer some suggestions for those seeking their own sexual and relationship fulfilment who are also on the spectrum.
Therefore my first thought is, seek your own truth.
Like all things every autistic individual is unique and our profiles are all different. What I love, you might detest. What I choose to engage in with partners, you may prefer to do on your own. Things, like genital contact, which I cannot cope with much of the time you might revel in. I believe though, that this individuality must be balanced with broader traits that we all share to a greater or lesser degree than can also cause difficulties.
Challenges around body language and social interaction can make meeting
new people and introducing ourselves extremely hard. Sensory situations means that the places often picked for first dates can be overwhelming.
Most importantly, is acknowledging that autistic individuals can be more vulnerable to abuse and exploitation as I myself have been at a number of times in my life. This has included surviving rape and domestic abuse and other highly risky situations when I was simply, at the time, not able to understand the potential danger to me.
So my second thought is, seek out people and spaces that you can trust and receive wisdom and education from them. Support groups for individuals (both in real-life and online, on Facebook) with similar challenges may offer a place to meet and seek support and advice from those who have lived experiences to your own.
The autistic brain can be analytical and detail-oriented, so use this to your advantage. Think about the kind of person you would like to meet. Reflect upon encounters that went well and not so well to analyse what you think caused the direction the interaction took. Explore risky situations you may encounter and how you might deal with these assertively and safely.
Practice saying no, but practice saying yes too, within the parameters of your own comfort zone.
The act of sex itself can be deeply satisfying or deeply challenging from a visceral sensory perspective. It is also important to note that a person’s perspective on this can change and fluctuate depending on many other factors such as how stressed they already are at any time, whether the proposal to make love or be intimate (if a partner is involved) was made at a time and place in which it can be processed or even if verbal notice was given of the first touch. I myself respond very badly to unsolicited touch and my partners have struggled against natural instincts to hug me spontaneously, especially if they have seen me in distress or aroused.
Touch at the wrong time can cause a very bad reaction and spoil the whole mood, so this particular aspect of my own sexuality always takes negotiation.
My third thought therefore is about taking the time, which may be a long period, to explore your own body and understand how your need for sexual
satisfaction and intimate touch manifests itself.
Masturbation is a wonderful activity as you are in control, a vital characteristic (I have found anyway) for an autistic person to explore something safely and develop their confidence. It is a solitary practice. Many people find that this is enough.
Some discover they are in fact asexual and can take some time to process this and become comfortable with it.
I have chosen and experienced a diverse range of sexual relationships and partners. From those considerably older than myself to living in a polyamorous triad for nearly a year I have been blessed to experience a huge variety in my sex life and relationships, having my life and body touched in many different ways. Sex can serve many purposes for autistic individuals, as I figured out when I received my sensory integration assessment which suggested, amongst other things, wearing tight clothing (latex?) and swinging (rope suspension) as well as deep tissue massage. I remember clearly walking out of a message appointment, stretching and thinking, “wow, that was just like a full body beating!”. (I have also tried kink too!). Obviously both massage and a beating activated my proprioceptive system in a beneficial and positive way.
My fourth and last thought is therefore about being true to yourself.
Autistic individuals are can be less constrained by social norms than our non-autistic peers. This in itself is a blessing and curse, as both a source of freedom and stigma. If you can reach a place where you can be truly happy with yourself, your sexual and gender identity whatever they might be, (and the fact that it might well change over the course of a lifetime), then I think you will have taken the first step towards enjoying a satisfying and safe sexual experience with whomever might be the right companion[s] for you.
I would like to finish by offering my hope for you as an autistic person, whoever you are and whatever your experience, to enjoy a safe, healthy and suitable sex life for you and your individual needs and differences.
As a community we are just beginning to find one another and ourselves. Each sex or relationship positive experience we have is a move closer to neutralising the stigma and marginalisation we can so often be subject to.
Although I have found lock down incredibly stressful and challenging, as most people have, a review of my photo stream on Google of the last five months reveals just how much fun, love and enjoyment we have had together since we all started socially distancing in March.
Highlights for me have included developing my sour-dough bread baking, visits to Cleethorpes and Derbyshire to go wild swimming and visit the coast, home-made birthday cakes, den-building and sleepovers as well as butterfly hatching and spending a lot of time in the garden. I’ve also taken on a new allotment plot, got rid of some really toxic relationships and taken the time to assess my life before beginning my PhD in October.
I have learned a lot about myself and my family in this time and I love the fact that I had the mind to take photos of so much so that we can look back on the Covid-19 pandemic and some point in the future and reflect on what we gained as well as what we struggled through.
