I had a meeting at school this week to discuss my daughter’s educational provision going forward. I went into battle armed with advice from online forums and a very good friend, together with school policy printouts and a mask (because what’s the prospect of homeschooling without catching blooming covid as soon as I leave work?)
But in the end there was no war. The research, prior negotiations, medical diagnosis, and the long discussions with my daughter about what good looked like (thank you, work, for that phrase!) meant it was surprisingly painless.
I know the deputy head from my invigilator days, sitting through his safeguarding training year on year. He’s one of the good guys. In fact, despite everything we’ve been through in the last three years, we are actually one of the lucky ones. We have a school with both the capacity and the understanding to meet us as a point of compromise.
When we chose the school (against my better judgment, because it was MY school, and who wants to inflict that on their kids?) it was very much because the Head made us believe that children came first. We haven’t always seen that in practice, but today I truly believed it, within the limitations of what they are able to do under government policy.
Only parents of SEND children or children who can’t be in school due to a long-term medical condition, will appreciate the immense relief I now feel to have a solid concrete plan in place for the next few months. Even if that does mean brushing up on 19th Century literature, the Black Death, Shakespeare and trigonometry. Google is going to have to cover RE and science!
After months and months of running on adrenaline, I am depleted. Covid has taken advantage and run riot, but if that’s the price, so be it.
I might not have chosen this life, this way. I still miss Work Me, and my work team. I hope to find some space to keep learning graphic design. But if this is the team I’m playing with now, if I need to be Coach rather than a star player, they will still get the best me I have to offer.
I thought I was ready for what it meant to give up work to support my daughter, and for my own mental health. I knew that it was going to be a test of my patience. I knew it was going to potentially mean boredom. I knew I might struggle to be present. What I hadn’t appreciated was the gut wrenching loneliness I would feel, like a part of me has died.
I know it’s only been a week but I feel like I’ve slipped out of time. There’s a whole world going on, but mine has gone back to having preschoolers, only with much more complex situations, like secondary school head teachers, to negotiate.
I can’t even put it into words, which is rare for me.
I guess, when the children are younger, you’re in survival and less aware of the passing of time. Then, when they get to primary, there is the camaraderie of the school gate. But now the only people who could understand our situation are in worse situations themselves, and even if I did go online to those forums, I want to escape where we are not read more heartbreaking stories. I want to talk about Bake Off and weekend plans and what’s for dinner, or even the next marketing campaign. I want to laugh at silly jokes and eat banana bread with people that, after two years, have become like family, even though we worked remotely most of the time. I’m so used to chatting all day on Teams, it’s taking all my self restraint to not spam them on WhatsApp. I miss them, but they’re busy getting on with life.
And I am trying to do that too.
All those things you say you’ll do ‘when you have time’. Decorating and napping and painting Christmas cards with my daughter. Writing again. And I’m grateful that I can. I’m grateful not to be juggling work with a poorly child at home. But being ND hasn’t left me with many friends and the ones I have, funnily enough, have busy lives too.
Our School Academy has a Policy on supporting pupils with medical conditions that includes the line, “No parent/carer should have to give up working because the academy is failing to support their child’s medical needs.” I realise they mean more administering insulin rather than recovering from neurodivergent burnout, but it did emphasise how much our school system is failing children with mental health issues. Because how can an Academy, with its limited resources and government targets, support a child who can’t be in school? Unless we’re all home for a pandemic, of course.
Things will get better. When the days get a bit longer and we fall into a routine. I nearly didn’t share this post, because it sounds like complaining. But it isn’t. It’s just spreading awareness that, just maybe, that person leaving work isn’t celebrating their freedom as much as you might think.
It’s been four days since I said a sad farewell to my full-time job and went back to my other full-time job of stay at home parent.
My brain’s been racing like a pen full of puppies since I handed over my work laptop, wondering how it was going to keep itself occupied. Should I start another novel, decorate the bathroom, take a video-editing course, or investigate part time jobs to help pay the mortgage? All while traipsing around after the teenage daughter with a shopping basket and a credit card for retail therapy (in the true meaning of the word therapy).
Today was the first day without the children home, as they were both off poorly last week, and I did none of the things. I made a bunch of medical appointments, did three loads of laundry, changed some beds, put up the Christmas lights, and took a nap.
There’s a lot of sleep to catch up on. I haven’t been burning the candles at both ends so much as chucking them wholesale on the fire for the last few months.
And then, as I left for the afternoon school run, I got the text message that I’ve been waiting for and dreading. I’ve known it was coming since my daughter was about five years old. ‘Mum, can we talk about homeschooling?’
In the car on the way home, I could see we’d reached that point. I spent Sunday decorating the Christmas tree with my happy, funny, rude, outrageous, motivated teenage daughter. Sitting next to me in the car, after six hours at school, was a zombie.
However, we’ve been in dialogue with school for years and so far not made much progress. We’ve managed to drop one subject, but it’s been made clear that there is no more room for manoeuvre, as the government believes the only place for a child to be is in school.
Honestly, I don’t disagree, if only school were a safe place. My daughter has ADHD. She needs distraction, she loves learning, and she likes to be around people.
But school is just too much right now.
Too much sensory input for her overwhelmed ND brain, too many arbitrary rules for her autistic mind, too unfair and too harsh for her endless empathy, and way too much expectation for her anxiety and RSD.
And now I know how I will keep my brain busy. I will be her advocate, just as my manager was for me at work, helping me negotiate and survive all those same things. I learned so much from them and wouldn’t have lasted a month in the role without them. Now I get to pay it forward.
I will try to become a warrior, an expert in educational policy and government rules. I will fight for support, and I will do what I need to do to ensure that my child thrives rather than survives her remaining teenage years.
And so this evening, I have been printing off statutory guidance and school policies and advice and researching where we go from here. I’ve chased up her EHCP and the next ASD assessment. I’ve reassured her I’ve got her back.
And the shiny new laptop I just bought so I can continue to learn graphic design and video editing? Well, I’m sure my teenage son will find a use for it.
It’s 7:15 am, and I have just been to Tesco’s to buy emergency supplies of ham, spicy crisps and white bread. This is not what Annabel Karmel told me feeding my children would look like. This is ARFID.
In case you haven’t heard of it. ARFID is an eating disorder that is often concurrent with autism, anxiety, and other sensory processing neurodivergence. It stands for Avoidant/restrictive food intake disorder and both my children have had it since birth.
I could see it in my son and I have been managing his for years. But when my daughter was diagnosed recently by a psychiatrist, at the age of 14, I admit I was shocked and mortified. Because she ate what would be considered ‘normal’ foods, or normal foods for a teenager: chicken nuggets, chips, fruit. It’s only looking back that I realise the sensory elements involved in her food, right from when she wouldn’t breastfeed and I thought I was a monster for putting her on formula. Formula which always tastes the same.
And now she is also battling depression, those sensory constraints have become much more obvious. At present, there are very few foods that she feels she can eat and if she can’t get the specific food that she knows she can manage, she just won’t eat. She is anaemic and keeps fainting.
One thing ARFID is not is fussy eating. So the doctor that told me her children ate ‘because she told them to’, when I went in tears of desperation with my malnourished son, was very lucky. I hope she never knows what it feels like to see her children sob in remorse because I have prepared something that they can no longer eat even though they are starving.
Enter safe foods.
The foods that always taste the same and have smell, sight, texture that is (nearly) always acceptable. There are very few safe foods and they’re usually expensive because they come in a packet. The ‘healthier’ the safe food (Bear Yoyos I’m looking at you) the pricier they are. My loyalty to Waitrose is not just the free coffee but the fact they stock the right flavour of Bear Yoyos and they’re often discounted.
And I’m grateful for teachers who make toast, for restaurants that happily serve chips and peas, and for whoever dictated that breakfast cereal and bread be fortified with iron. Have you ever tried to give iron to a child with sensory needs? Our fridge has three flavours of liquid iron, none that can be disguised in juice, and I’ve tried every chewy vitamin I can buy, because they can’t swallow tablets.
I will go upstairs later and find a half eaten ham sandwich, and be thankful. I’ll message the SEND hub at school and ask them to make toast. And then I’ll go to work.
So, it’s been a couple of months since I went back to work and, I’ll be honest, it’s a struggle. I’m definitely in the ‘not waving but drowning’ phase.
Don’t get me wrong, I love the work. It’s frustrating and bitty and annoying, but it feels so good to be using my brain again. I feel like a part of the world; I feel useful.
But, oh my days, am I out of spoons. If ever I wanted to explain spoon theory, now’s the time. So, here goes.
Spoon theory was coined by Christine Miserandino as a way to describe units of mental or physical energy. For Christine, who had lupus, it was physical energy, but I have always heard it in context of the mental energy associated with neurodivergence. And that’s what I’ll describe here. This is purely from my own experience of my neurodivergent family.
When I say that a spoon is a unit of physical or mental energy, I mean it’s what’s required to do those tasks that aren’t done automatically. You probably don’t need a spoon to go for a wee, unless of course you do. It’s hard to define because it’s different for everyone. I see it as any task that needs that extra push. Think of it like a car using fuel – you use more at 20mph than you do idling, and you use a lot more at 80mph. But it varies by car. And some cars have bigger fuel tanks.
Each of my family members has an invisible illness – anxiety, ADHD, ASD, depression. They’re not all diagnosed, but they’re all there, especially for me. My job for the last decade or so has been to dish out spoons to keep the family functioning. When the children were little, it wasn’t so obvious that that was what I was doing. Nurturing, providing for their needs, is natural when they’re five. It isn’t until they’re ten or more and you’re still doing it that you realise there might be something more.
Let’s take a normal school day morning. My son can get up without prompting, he makes his own breakfast. But there it gets tricky. He needs reminding to get dressed on time, he needs a nudge to brush his teeth. He needs help finding the right clothes for whether it’s PE or not, or if I haven’t put the laundry away. He’ll need to be told to pack his homework – several times – and to fill his water bottle. I’ll pack his lunch and make sure his shoes are clean and where he can find them. We’ll find his coat and make sure he has his phone. Now, let’s list that:
Find right clothes
Get dressed
Brush teeth
Pack homework
Fill water bottle
Get lunch
Find shoes
Find coat
Find phone
Track the time
These are all tasks that require a bit of extra mental energy to make sure they happen, especially to make sure they happen in time to leave the house at 8.15am. So, each one of these is a spoon. Ten spoons, and we haven’t even started the day.
Then I make sure my daughter is awake, is mentally able to go to school, has breakfast if she wants it (three spoons), I make sure my husband has eaten breakfast, because he won’t without a nudge, and then his day is harder (spoon). Then I need to make sure I’m fed, dressed, brushed my teeth, fed the dogs, fed the hamster, walked the dogs, (six spoons) maybe put the dishwasher on because none of us managed it the night before. Sign my daughter’s diary, or check school emails, maybe it’s World Book Day or my daughter needs a new notebook or can’t find a glue stick. All spoons.
Before I went back to work, that would be it for the morning, more or less. After the school run (which my husband now does, so that’s a couple of spoons gone for him), I would have until 3pm to get my mind straight. Catch up on tasks that hadn’t been done. Rest. Do something creative. Often sleep. Basically, top up my dopamine levels (ADHD), although I didn’t realise that’s what I was doing.
Then I would do the afternoon school run (also now my husband’s responsibility), which would require working out where my son wanted picking up from. Then home. To another few hours of dishing out spoons. Different meals for each neurodivergent person. Different after school activities. Mental exhaustion to soothe from the three who had been out in the world. More dog feeding and walking, more chores. Asleep by 9pm at the latest.
And now? Now I do most of that still, but between 9am and 5pm I have a job. A complex one, with lots of stakeholders, lots of deadlines and remembering things and keeping track of things. I have three different to-do lists on my desk. And still, I carry a lot around in my head, to make sure I don’t miss anything important. So. Many. Spoons. And because I need extra support to make sure I remember all the steps in a process, I have process-mapped a lot of my tasks. I had a call from the Project team yesterday, saying my process maps were great, and could I add them as a project. It’s easy, here are a couple of forms. Another task, another stakeholder. More spoons.
There’s this view that I’m organised. It makes me laugh. I’ve heard it before, and I used to let people believe it, and then work oh so hard to keep up the pretence. I’m not organised. I have ADHD. My brain is like someone emptied out the scrabble bag and now I’m trying to read it like a book. I have process maps and to-do lists and printed out plans because I’m NOT organised. It’s scaffolding. The same scaffolding that I put around my children so that they can seem ‘fine’ in school (hint: they’re not). I’m lucky that I work somewhere that I can say ‘I have ADHD’ and their response is ‘how can I help?’ Unfortunately, I don’t have an answer to that question.
The scary part? I’m only doing about half of the work I will need to be doing in a few months. If I’m still there in a few months. I am so tired. I’m asleep by 7pm. But it’s not restful sleep, because my brain is still trying to create order out of the chaos. I’m eating non-stop, constantly searching for dopamine because I’m too tired to exercise. And exercise takes spoons to start, even if it replenishes once it’s done.
This is not a whinge. I am so lucky. My husband and children have really stepped up to fill the gaps in what I used to be able to do. But I’m tired of eating takeaway. I’m tired of an even more chaotic house. I’m tired of once more having a constantly full laundry basket and a constantly messy kitchen.
I used to wonder if there was something wrong with me, that I couldn’t work and run a house. I didn’t have the skills, maybe, or I was lazy, or I just needed to try harder, or make my family do more, or hire a cleaner. (We’ve been through three cleaners. Too many spoons.)
It turns out there is something, not wrong, but different about me. And now I must decide what’s more important – having a job, an identity, a chance to use my skills, feeling alive and part of the world, but having my home life a stressful chaotic mess. Or having enough spoons to have a happy home, but not use my brain. It appears I may not be able to do both.
By 8am this morning I had cleaned the kitchen, searched out some knitting patterns, researched three potential new career ideas, and made breakfast. My brain was like scrambled egg. I don’t know if it’s new extra self-awareness, or the menopause, or a lack of exercise, but these days I feel like a toad in a blender (Cubs song lyric).
I try to meditate. It’s hard. Deep breathing exercises make me panic and forget how to breathe at all. I used to hyperventilate during antenatal classes when they did breathing exercises, even though I found concentrating on my breathing really powerful during labour. Similarly if I approach anything like an out of body sensation, which does occasionally happen when I meditate, it completely freaks me out. But meditation is meant to be good for things like ADHD so I persist. I guess you have to develop your own style.
I had a mini breakthrough today. I really like metaphors to help me grasp concepts. This morning I imagined my brain was a pond that I was chucking stone after stone into, until it was muddy and turbulent. That helped me imagine that I needed to let the pond water become still, so I could throw in one pebble at a time and actually see the effect of the ripples. As an image it really worked, especially because I find water very relaxing. I used to sit up to my chin in my mum’s pool and let the water go mirror smooth before swimming slowly through.
I’ve missed the pool this year, after it was damaged in a garage fire. Being in water allows me to be restless in a restful way. In the summer, I spent an hour every morning in the hot tub, just feeling the water on my skin and letting my brain wander. With no dogs chucking tennis balls at me, which was an added bonus. If only it wasn’t so expensive to run, I’d have it up all year round.
Having the right music to meditate to is important for me as well. A lot of tracks that are called ‘calming’ on streaming sites like Spotify actually make me very agitated. I need music that is not too tinkly or repetitive. I also need to make sure the music is completely familiar, to the point where I don’t actually hear it but it is still filling up the gaps in my brain.
In fact, I use Spotify playlists a lot to help me structure my day. I have a playlist for doing physio exercises (when I actually do them) and a playlist for cleaning the kitchen. I also have a playlist that I have on constantly, especially at night, which acts like white noise. The only time I enjoy silence is when out walking. I guess all the sensations of weather and nature keep me distracted.
I saw a meme once that said fidget toys keep the cat in the mind busy so it doesn’t push your executive functioning off the table. Music and water stop my cat lashing out and scratching everyone.
So, I’m pretty certain I have ADHD. I can’t remember if I’ve mentioned this before, and if I go off to look, I’ll forget what I’m doing and the idea I’ve had for this post will vanish. Although the forgetfulness might be peri-menopausal, so there’s that too. Or it could be depression. Aint it grand to be alive?
Anyway, I started investigating when I suspected my children of being neuro-divergent. Ironically, thanks to a call to my GP, it appears I might get an assessment before they do, which is just wrong. But the broken NHS, broken mental health systems, broken school system, broken government, they’re all distractions, other posts I won’t write here. But they lead me nicely into what I wanted to write about.
There are lots of ADHD Facebook pages, YouTube Channels, memes. Too many, in a way, as I feel I shouldn’t be adding to that noise, especially as an undiagnosed person. Still. The pages are wonderful, nevertheless. Helpful, supportive, affirming. I’m not lazy, I’m not crazy, I’m not broken or stupid or worthless. I’m just (potentially) wired differently. (I feel like a journalist writing ‘allegedly’ when it was quite clear who the murderer was, but there you go.)
However, enlightening as they are, the various analogies weren’t working for me. Yes, my head feels like a washing machine on spin; yes I’m exhausted; yes I’m out of spoons (a wonderful phrase to describe the depletion caused by neurodiversity), but none helped me explain me to my husband, or gave me a way to help myself or my daughter. After all, if you switch the washing machine off mid-spin, you just get a soggy mess and your clothes are trapped.
The analogy I’ve come up with to describe the feeling is that of an orchestra. I played in the orchestra at school, it was quite a big part of my life then. I was fortunate to have hobbies that kept the manic cats in my head occupied. I wish my daughter did. So, an orchestra is a useful metaphor. Sometimes, the orchestra is tuning up. It’s just noise. A cacophony of nonsense that I block my ears from and run away. Sleep is my friend.
Then, at other times, the different instruments all start playing. This is most common at 5 a.m. They’re playing, but they’re all playing something different. The lead violinist is nailing the twiddly section that opens the second movement of Vivaldi’s Winter, whilst the violinist in the next chair is playing Rimsky-Korsakov’s Flight of the Bumblebee, which is basically a musical panic attack. The cellist is lost in the dramatic opening to Elgar’s concerto in E Minor; it’s so beautiful that I want to listen all day. But the guy on the timpani is crashing out the first bars of Fanfare for the Common Man like he’s auditioning for the ghost scene in Moana. Briefly the brass section joins in, and it sounds like Star Trek, which takes my mind off on a tangent, thinking about why the red shirts didn’t see danger coming. They all pause to listen to the clarinet playing Mozart, and then they’re off again with their solos. Together. Loudly. Each trying to be heard over everyone else.
And it isn’t just noise. I sit in the audience and listen to each beautiful musician and each is worthy of attention. I sit and think, oh I’ll listen to the Four Seasons today, or I haven’t heard Jacqueline du Pre’s rendition of Elgar for ages, or what is it the viola is playing, I must look that up. I might even settle on one thing to do with my day, but by the time I’ve got up, fed kids, made lunches, done the school run, walked the dogs and stacked the dishwasher, I’ve forgotten. Or I realise that I should, metaphorically, be practicing scales, and that’s boring, so I do nothing.
Every. Single. Day.
I’m a crafter, so the house is full of half-finished knitting or crochet or painting or drawing or watercolours. I’m supposed to be doing physio for a bad back so I can start running again. The house is a crazy mess in constant state of flux. I have EHA meetings with the school about the children’s issues, and I want to solve my daughter’s loneliness. I need to lose weight, and eat well, and fix my brain and calm my hormones. It’s suddenly so damn hot, do I have Covid or a hot flush? I need to find a job or a way to earn money, since I quit my invigilator job because the training was so awful. The dog is scratching her ear again and probably should go back to the vet. The car insurance is due. The fridge is empty. The ironing basket is over-flowing. The floors are crusty and there’s dog hair in the bath. The lawn needs mowing if it ever dries out, and I must pick up the dog shit and clean out the hamster. And feed the locusts to feed the gecko. And find the lost shin pad and make sure the football kit is clean. Find the old milk glass stinking up the boy’s bedroom and read the book the girl is studying so I can understand her homework. Oh, look, it’s time for the school run again and all I did was play Alphabetty or sleep. I’ll try again tomorrow.
It’s exhausting. ADHD may be about hyperactivity, but when it’s brain activity, it is draining. Running and karate helped because they created energy and gave focus and a moment of calm. I haven’t done either for a year and it’s awful. But physio exercises? Something boring and difficult that I have to do every day? Not a chance. I need an app to remind me to brush my teeth and then it’s once a day at best. Don’t even ask me how many times I’ve lost my car keys in public. I terrified a woman in the Co-op yesterday because I rang my Tile (best. gift. ever) and the keys were below her till.
Where is the upside? Because there is an upside to (possibly having) ADHD. Occasionally a conductor shows up. Sometimes he’s called ‘Crisis’ or she’s called ‘Urgent Deadline’ or maybe ‘Hyperfocus’ makes an appearance. They tap their baton, clear their throat, and all those little thoughts hush and pay attention. Suddenly there’s a purpose, someone is in charge. The conductor says, ‘Today we’re playing Paint the Kitchen before the Parents come to tea.’ The lead violinist opens with, I’ve got a plan, and the second violinist joins in with make a list. Then the brass section weave in, move the furniture, take down the paintings, don’t forget to put something in the slow cooker for dinner. The percussionist taps out cut in the ceiling, roller the walls, walk the dogs, repeat. And before you know it, it’s all come together into something beautiful, something that can move mountains. Or paint a whole kitchen in two days.
But, I tell you what, those players are EXHAUSTED at the end. They’ve given everything to stay in sync. The conductor disappears off, possibly before the piece is actually finished and, in the audience, I sob at the beauty of it, knowing I won’t see the like for a long time. We all sleep for a week. And then, slowly, one by one, the players start practicing their solos and we’re back at the beginning.
And I’m left, trying to sort my Copland from my Smetana and wandering off on a tangent wondering what happened to my awesome music teacher, and wishing we’d done musical theatre in our GCSE like they do today. And did you see Strictly on Saturday? That Paso?
Note: this post was from a few months ago but hadn’t published. I think it’s still relevant so have hit Publish.
I’ve been thinking about the phrase ‘not waving but drowning’ recently, realising that so many of the funny posts shared on social media at the moment are really a frantic wave.
Then I recalled the course on water safety I did as part of homeschooling my son last year, particularly the fact that drowning is actually a swift, silent killer. The drowning person is too busy using their arms to stay above water to be able to wave. Too busy struggling for breath to shout for help. Before anyone notices, they slide beneath the surface and are gone.
We learned, too, that walkers and runners are most at risk of drowning in the UK. Not the surfers and swimmers who might be prepared for danger and equipped to deal with it, but people going about their day, not considered by themselves or others to be at risk.
So, my message is, watch your loved ones. Be a lifeguard. As someone who knows all the signs of slowly slipping beneath the surface, and is still desperately looking around for a lifeboat right now, I assure you, people you know are struggling to breathe. Maybe even people like me, who ‘have it easy’; who aren’t trying to hold down a job and teach five kids and care for aged parents, but are still wondering how to get the next breath.
We worry about out kids’ mental health right now, but their minds are elastic, they will bounce back. An adult who already found life hard might not be so lucky. Check on your friends and loved ones, make sure they’re not too exhausted to wave or shout for help.
I’m ready to start writing again. Or trying to, at least. The last two years of Covid Crazy have been more than tough, particularly on my children. We’re all discovering neurodiversity we didn’t realise we had (ADHD for me) and time away from systems (like school and karate) have shown how broken and toxic those places can be.
I’ve had to accept that my full-time job is filling in the gaps for the family between who they are and who society thinks they should be. That actually involves taking a lot of naps to restore depleted spoons (that’s another post if you haven’t heard the term).
But I want to write. Reading has kept me going all my life, but never more so than now. I’ve been trying to think what to write about that’s authenticity me, though. I can’t write about ADHD – I’m not diagnosed, and I’m only just understanding what it means. Besides, I like Middle Grade magical fiction.
So, I’ve tried to understand the common theme across the wide range of books I do (and, more importantly, don’t) read. Then it came to me as I swam in the hot tub this morning (which is possible, as long as you don’t mind not getting anywhere!) The books I love are always optimistic, at least in the end. And they’re all about finding your tribe. The wizards, the people in Nevermoor, the elves of the Lost Cities. Finding people who understand your weirdness and explain why you didn’t fit in where you were before. A sense of belonging.
It turns out I’ve spent my life reading about neurodivergent people without ever realising it. Even a book called Divergent didn’t give a hint. All the stories I’ve written have been about not fitting in, in a way that can’t be fixed by taking a bath and learning to relax (the advice my ADHD daughter keeps getting from Counsellors).
So, that’s my genre. And it is a genre. Finding Your Tribe. That’s the easy bit. Now I just have to sit down and write. I should probably get out the hot tub…
Note: this post was from a few months ago but hadn’t published. I think it’s still relevant so have hit Publish.
writermummy 