Today was a day

I’ve been rummaging around in the background trying to work out what has been going on with my posts on the Facebook. It turns out, my account is restricted, I don’t know why, as only bots are replying to my help requests. Apparently, it is their final decision.

I have kept my private and business life separate. My profile is different to my page. There are are only people I know on my private feed, but one of them raised an issue about the content I posted in January and since then…

This makes me sad, because the majority of things I share are funny, or about the cat, or about our son, or about mental health awareness, or equality. Which I will not not ever bang on about. Equal rights for others does not mean less for you – it’s not pie.

It has had an impact on my business, because the adverts I thought were running, weren’t. It has taken me weeks to unravel this and work out what has been going on. Because it’s my private account that has been restricted, it’s flowed down to everything ee grant business-based that was linked to it.

I’m sad, frustrated, annoyed – all the things. There is a part of me that wants to throw it all in, close this down, tell everyone to go forth and multiply. There’s a part of me that gets extremely triggered by rejection. I know now it’s part of ADHD and actually has a name, Rejection Sensitivity Dysphoria, or RSD.

I’ve opened up a new account. I’ve had to add the husband onto the page and hope that we can do a work around, otherwise, I’ll have to close it all down and start again.

Over two years’ work down the drain. Particularly galling as my whole “thing” is to build connection and share stories to make the world a better place.

Then to cap off the morning that started really early with the new puppy, and reading the report from FB, I spilt my mug of tea over my desk. I know I needed to clean it, but I’ve got a duster for that. And! It was my last Assam tea bag too.

Like I said, today has been a day. Tomorrow is a new one.

A group of stick figures holding a banner that says, 'Be the type of person that you would want to be around' One figure has their thumb up, another is applauding. All are smiling.
Be the type of person that you would want to be around.

Assessment and support services for people with ADHD

Submissions to the Australian government inquiry are still being accepted as they’ve had a problem with the website. I’ve edited it a bit to take some details out. We could add this post to the others in about me living with ADHD and not getting a diagnosis till my late 40s. The first post in that series is Returning to self.

Thank you for the opportunity to make a submission to the Inquiry. I will concentrate my response on the following Terms of Reference:

  • (a) adequacy of access to ADHD diagnosis;
  • (b) adequacy of access to supports after an ADHD assessment;
  • (d) impact of gender bias in ADHD assessment, support services and research;
  • (e) access to and cost of ADHD medication, including Medicare and Pharmaceutical Benefits Scheme coverage and options to improve access to ADHD medications;
  • (e) access to and cost of ADHD medication, including Medicare and Pharmaceutical Benefits Scheme coverage and options to improve access to ADHD medications;
  • (e) access to and cost of ADHD medication, including Medicare and Pharmaceutical Benefits Scheme coverage and options to improve access to ADHD medications;
  • (f) the role of the National Disability Insurance Scheme in supporting people with ADHD, with particular emphasis on the scheme’s responsibility to recognise ADHD as a primary disability;

My husband and I are parents to an 11-year-old boy, A, who was diagnosed with ADHD in September 2017. However, to access support from the NDIA, A’s diagnosis was revised in September 2019 to: “Autism Spectrum Disorder Level 2, with speech and language delays, and ADHD”.

The two diagnoses cause different issues and require different management, but had they been listed as ADHD first, we were told we would be ineligible for NDIS funding – by the NDIA coordinator when we initially sought funding, by the paediatrician and by the psychologist. To get these updated reports, we paid for psychologist, speech pathology and paediatric testing; and their respective report writing time, twice in three years.

It is impossible to comment on the inquiry without referring to A’s schooling, even if support for A is supposed to come from his school, not the NDIA. I think the NDIA forget that for children at school, they need wrap-around support. For that reason, I will be addressing it through (b) adequacy of access to supports after an ADHD assessment.

In February of 2023, (A is now in Grade 6), we had another cost of meeting with a different Educational Psychologist for further testing. This was to re-confirm the adjustments and modifications already noted in his Individual Learning Plans and term/ final reports from Grade 3 onwards. This information, nor are the details we have on file with the NDIA, are enough to support A through to Grade 12. Also, for these tests to be completed in February 2023, I had to book in November 2022.

Over the course of the testing in February, it was identified that A lives with Dyslexia and Dysgraphia. Unfortunately, because A can articulate well and doesn’t have a low IQ, he is not suitable for a Vineland test to unlock funding for him for a dedicated key worker at school. Notwithstanding this, he is unable to complete most tasks without either support, reminders, or additional time. His measured output continues to be low; he’s testing around 18 months behind his peers with reading and writing skills.

A will not get nominated for ‘excellence’ awards, nor reading prizes, as his brain simply does not work in the way they’re judged. He’s scattered, constantly forgetting things, will drift off in the middle of lessons and when he gets home from school, he’s basically fried. He’s physically unable to do anything other than decompress after the day. Homework is an ongoing battle for him, he’s simply too tired to complete even the simplest of tasks, including reading for 15 minutes. He’s constantly comparing himself to the children in his class and why they’re reading chapter books; what was identified as him self-regulating at Kinder by turning his back on the room and looking through books, has disappeared into anxiety and comparison. His tiredness at the end of each day also has a knock-on effect into team sports. Instead of being a thing to enjoy, A sees them as a challenge that he has to ‘mask’ at. Often getting overwhelmed with people not being ‘ADHD aware’ shouting at him. He doesn’t understand they’re encouraging him; he only hears the noise.

We’re grateful to have adjustments in place for minimising work given and extending his time to do it at school; but when he’s exhausted, not completing his homework will only get harder for him when he gets to high school. Also, as his parents, we run the gauntlet as being perceived as in the wrong, when we allow him to rest.

We did not put him through NAPLAN, because he gets stressed and overwhelmed being in a testing scenario. During the practice tests last year, he enjoyed the novelty of the first 15 minutes; started getting worried in the middle 15 minutes; and was so distressed in the last 15 minutes he was disruptive for the other children in his class. He could see other children answering questions around him that he either didn’t know the answers to, or had no concept to work from. With ADHD, he was also getting frustrated at having to answer similar questions repeatedly.

When A arrived in Grade 4 to [this school], (term 2 2021), he was met with a teacher that gave all the children flash cards in his classroom, if they needed a movement, meal, stretch, quiet or whatever break – they were able to pass a card to him. No questions asked. Consequently, the children felt listened to and understood, all of them were able to relax and learn into their learning. Each of the classroom areas have their own little library, a communal area and a ‘donut’ room which is quiet, relaxing and filled with cushions.

In Grade 5 and 6, A has had the same teacher, she also allows the children to take breaks when required. In this last year of his primary school, instead of being excused to the quiet room, the children are expected to manage themselves in the classroom. Upskilling them gently to manage themselves when they get to high school.

We continue to be grateful for the teachers and staff at his current school. This is 180° away from A’s Grade 2 teacher’s attitude. Not least because he ‘didn’t believe in ADHD’. We met with this teacher before term 1 to open a dialogue, take him through A’s diagnosis, and how to manage A’s overwhelm, as he was beginning to recognise his limitations compared to his peers.

This teacher would manage the children in his class only by punitive measures; as an example, sending them out to litter-pick on break times. We had a phone call home from him on the first day of term 1, saying he found A obstructive, rude, and defiant, he was requesting a meeting to discuss his behaviour. When we tried to explain that our son was shutting down due to overwhelm, that he was not being disrespectful or disengaged, we were told that it was his classroom, and he would manage it how he saw fit.

A sees a psychologist fortnightly. Just last month as a session, he mentioned he was sad about something at school, that had reminded him of, “When I was in Mr X’s class”.

We have to fight every step of the way to find support for A. Even with NDIS funding theoretically meaning that we do not need a referral to access allied health, we still rely on a spot becoming vacant from wait lists. I called around paediatrician, speech pathology and occupational therapy clinics weekly from our arrival in Ballarat in March 2022. It took 2 years to find a paediatrician who had room to see us, meanwhile we relied on our paediatrician in Eltham to support the family through telehealth. When we’d found the paediatrician, I had to pay to see our GP for a referral for A. We were booked into a speech pathologist in term 2 of this year, again I had to get a referral from our GP to meet with them. We’ve still not found an occupational therapist. These referrals only last 12 months.

The NDIS Plan we have is self-managed. However, the support budgets are ring-fenced, so if I don’t select the correct line code, a claim is rejected. We do not get a notification of it being rejected; we just notice we’re short in our bank. I must log in again and view payment requests to see what’s going on.

To make matters more confusing, when you claim, each of the five support categories have the same number next to them, including two support categories that aren’t in A’s plan. Despite not being able to access allied health support for over two years; the money we had in the plan was absorbed into a new plan in November 2022, not rolled over.

We need to purchase an iPad for A to assist with his reading and writing, with access to talk-to-type programs and has books read to him. This has been recommended by his teacher, his psychologist, the education psychologist, and his speech pathologist twice this year. However, as we used his $500 budget line for consumables already, the purchasing of it has not happened.

I put the same request in again late last week, I’m hoping this time I can convince someone at the NDIA that this is a requirement for A. That they will release some of the money from his support services budget line, money that we’re not using as we can’t find all the therapists he needs. Instead of the NDIA providing what we ask for, we’re going backwards and forwards justifying what we’re asking for. We’re doing all we can to prepare him for transitioning to high school, but the one tool he needs to unlock his world and assist him has been refused. There is currently over $5,000 to ‘improve his daily living’ sitting there that I can’t claim against, because the iPad is considered a consumable item. I could put a bill in for 10 sessions of a therapy to release the funds to buy the iPad. Then if I am audited, I could be prosecuted for fraud.

The ADHD gap for A is growing wider, when early intervention demonstrates it costs society less long-term in support and funding. A is capable of being a bright and engaged part of society, but how the school system is set up is not suitable for neurodiverse children. If children don’t fit into the standard box of sit down, be quiet, learn facts, regurgitate them in exams, they’re not going to succeed.

A loves building models with his dad, he’s won competitions for the dioramas he’s built from kits. He makes resin trays for family and friends. He goes down YouTube worm holes like every other 11-year-old, in some respects, he’s perfectly normal. But he’s already showing signs of anxiety and depression, not understanding why when he talks to people he’s articulate, empathetic, hilarious, kind-hearted and quick-witted. But when sits down to write, he struggles. It’s physically harder for him to write because he will get into an overwhelm or frustration ‘holding pattern’, knowing that what he wants to say, but his brain goes quicker than his fingers can keep up. The NDIA wouldn’t release his funds to support him. The measures he’s held against at school do not allow for children who see and move through the world differently.

The past seven years of advocating for A lead to me pursuing a diagnosis for myself. I was tested in February 2023, diagnosed in March and only found a psychiatrist to potentially prescribe me medication in May. It’s now June, I’m still waiting on the medication being prescribed.

There is no practice in Ballarat that would meet me after the independent testing I’d had done. In total, I sent over 20 email requests to different practices. Some didn’t bother to reply, some told me there was no room, but mostly I was told they would not accept independent ADHD diagnosis; they all wanted to re-test me from their rooms. This is ridiculous, when I spent over $1,000 and it took two days to complete. It is not just a waste of money for patients, but is putting more strain on an already exhausted system and people.

I am now seeing a psychiatrist in NSW, via telehealth, that found online. But only after all the paperwork I’d sent to the psychiatrist had been reviewed, was I accepted into their practice. I then had to pay to see my GP for to get a referral, as you can’t self-refer for ADHD. This paperwork was sent off, but a month later, I then had to pay my GP again to get a physical completed; despite me giving access to my entire medical history to the psychiatrist.

I’ve been labelled erratic, inconsistent, flighty, temperamental, irrational or lazy for my entire life. For over 40 years I’ve struggled to fulfil or fit into what has been expected of me, often forcing myself to push through when I should have rested. I’ve been misdiagnosed with depression, anxiety, PTSD, Body Dysmorphia, suicidal ideation. It is soul-destroying to discover what you thought were your personality traits, are actually diagnostic markers. When you couldn’t find explanations to why you would feel so adrift, but couldn’t articulate why. Or not to be able to ‘cope’ with life as well as you should be able to, from one day to another. Why you would consistently fail to meet expectations of yourself, or others, including employers.

I do not want this for our son. Yet, the past seven years have shown me that despite his diagnosis, he will be left behind. The support systems we rely on are so fractured and disparate, no agency talks to another agency – they rely on the parents advocating for their children. My husband and I both work full time, but we still can’t afford all the supports for A, we rely on the NDIS to support us to support our son.

We cannot afford for his fortnightly visits to a psychologist. We cannot afford his speech pathology. If we ever find an occupational therapist, we cannot afford to pay for that either. Our NDIS plan is just enough to cover these therapies for the year. We both work full time in the Victorian Public Sector; what about the families in Australia that are working three or four jobs to make ends meet? You are not going to hear from them, because they’re just about scraping through.

To complete the submission to this Inquiry, I tried to calculate how much it has cost us to date to get a diagnosis and support. When I reached $30,000 in doctors and testing fees, I stopped counting. Not least because we’ve paid for the same tests three times now. His prescription costs us around $384 a year. We’ve changed our diet as a family, cooking as much as we can from scratch and avoiding pre-packaged food. Like many families we’re seeing grocery bills get more expensive each time we shop. We also spend nearly $200 a month on supplements; a specific Omega compound, with a higher DHA than we can find on the high street, Ashwagandha, Rhodiola, L-Tyrosine and Melatonin. This is paying off as he forgot his medication last week and coped at school instead of having a meltdown, but it all adds up.

I would like to meet the people at the NDIA who reject claims for support or equipment as too expensive. Instead, please start accepting that therapists and specialists who are more qualified and know the clients they’ve assessed, do understand what their clients need! The iPad we want to get for A to assist him is around $700. I have been working on this submission off and on for a month. I’ve spent more than $700 of my time reviewing our paperwork, researching this submission and writing it.

Thank you for reading.

On being a lighthouse

A blue lighthouse line drawing on a lighter blue background. In cream writing it says "If I can, you can too."

you will not always know the power of your words or actions.

but someone out there will see you, and know how hard you’re trying.

when you show up every day, you will let other people know it can be done.

a friend will check in on you, asking for advice or to cheer you on.

by showing up every day, you stand tall and light the way for others.

don’t give up. rest. start over. especially if you don’t feel like it.

showing up every day? it matters, and more than you know.

I got an email this morning, from someone I used to work with years ago. Before I moved to Australia, that amount of years ago. They wanted to let me know they’d finally read my book. It had been on their bookshelf for a while, but this Easter weekend, they picked it up and read it.

In one sitting.

They were excited to see that I was converting One Last Hundred Chances into a screenplay. They reminded me of how hard I’d worked while going through my messy divorce, they told me they were proud. They were excited for me and how my life had changed.

I slept really badly last night, I didn’t get to the gym. I slept in. I then sat up in bed and journaled. I wrote this.

In case you can’t read my writing:

I am. I am. I am.
Lighthouse for those around me.
Show the way for those who are still working at what they’re doing.
If I can, you can too.

This morning, I also decided I like my handwriting. It’s full of loops and curls, like life. Like me. I like how my letters run into each other in my haste to keep up with my brain.

As I continue to unpack the ADHD diagnosis, I’m not discovering more about myself. I am revealing more of who I always was.

What is on my bedside table?

As of today, here is what I’ve read from the prompts for this year’s The 52 Book Club. I’m enjoying this challenge as it’s as flexible as you need to be; some people in the Facebook group have completed it already, others have barely started.

To avoid buying books, I’m trying to choose from titles on my shelves already, (including the kindle). If I get stuck, then borrowing from the library first; while keeping my fingers crossed for a second-hand version; or using an audible credit, before buying a new book.

Which works ok, until you listen to a book and can’t imagine living without it in your house. See Bono and Chloé Hayden; even Jean Rhys has made me re-read Jane Eyre again on the kindle, and I’ve decided I now need a physical copy of Jane at home.

I’m also trying to fit my Book Club book selections into the prompts where I can, Mrs Benson’s Beetle as an example. Managing to borrow a copy from the library – triple tick / Venn diagram crossover!

Here are the books I can firmly say meet the prompts and I’ve finished.

On the pile to read, selected from prompts, but not got to them:

Some additional books I’ve read, but I haven’t looked if they fit the prompts yet:

  • Various and multitudinal audio versions of Agatha Christie. I’m not going to link them (as you can find them easily enough), I’ve read most if not all of her books at some point. I said to Mum the other day, I ought to go on Mastermind about them. And Then There Were None, The Body in the Library, At Bertram’s Hotel, Cat Among the Pigeons, The Hollow, Death in the Clouds, Death on the Nile, Evil Under The Sun, Dead Man’s Folly.
  • ADHD 2.0, Edward M. Hallowell, John J. Ratey – this is such a good book to explain ADHD, I’ve brought it and sent it on to others.

On the way over the past 6ish weeks of reading almost daily, I’ve reminded myself how great it is, laughing and crying along with the story. I’ve cut down on doom-scrolling, I’ve also got to the gym at least twice each week, sinus infection notwithstanding.

My favourites so far;

  • Rohinton Mistry’s A Fine Balance. Was NOT ready for this book. I love Rohinton Mistry’s Family Matters and have had A Fine Balance on my shelf for ages. It was beautiful, brutal and broke my heart. It also reinforced how much I love reading books about India. I’ve no idea where that has came from, but it’s a continent I return to time and again through books.
  • Alain de Botton’s How Proust Can Save Your Life. I love how de Botton writes at the best of times, this was the most glorious of times. de Botton shares vignettes from Marcel Proust’s life, with excerpts from letters and books, ‘How to choose a good doctor, ‘How to enjoy a holiday’ each chapter is grouped into topics and is delightful. It couldn’t have been written by someone who didn’t love and intimately know their subject. Can’t recommend it highly enough.

Ministry of Sounds

Another in my series of living with ADHD, and not really realising it. Link for part one, Returning to Self and link for part two, I’ll Tumble 4 Ya. This one is a hot mess of sounds, time awareness and bruises.

I remember driving out of Doncaster Shopping Town, our son was still in his car seat with a five point harness, so not very old. He was cross, he was ratty, he was over shopping, people, lights and noise and his general demeanour in turn had set me off. I was sat at the traffic lights, also ratty, also over people, lights and noise so I did what I do to cope.

I put on some music really loud.

Our son started crying louder. I turned it up so I couldn’t hear him.

3.2km later (I’ve just looked it up), I had to pull into a garage at the roundabout, I was also now crying. I stopped the car in a parking bay and got into the backseat next to him. I undid his car seat and we sat with each other. Me apologising for putting the music on and upsetting him more.

In my late teens and early twenties I discovered clubbing. I went out to dance. From 9pm to 1am, two or three nights a week, I was on the floor. I didn’t care if I was the only one dancing, unusual for me not being worried about being up and visible. The music and the clubs I went to were a safe haven. The music pounding in my chest, took all thoughts away from me.

The bouncers knew me by name, I’d go clubbing with P and later E. Whoever I was with, it meant we’d be pulled out of the queue and fast-tracked in. The taxi company P and I used would also send a car out quicker to us at the end of the night, because they knew we were only 8 minutes up the road from the club and were sober. A quick turnaround and an easy job.

Every so often you get a song that lifts everyone and is the song of the season. If you’re lucky, its a great tune and will stay on the DJs radar, this is a song I listen to almost daily and I still love.

Bonus points if you knew what it was going to be before the link opened up 😉

It was a total floor-filler, the entire dancefloor wafting around in the middle of the song, waiting for the beat to drop and then we’d all go crazy. That song is my everything. It’s my starting ritual. It’s my mood changer when the world has gone to hell in a hand basket (hence the daily play). It’s my pep talk. I honestly can’t tell you how much I love it.

I’m going to do a playlist on Spotify, watch this space.

Rarely, I can also use it for a burst to get me through and give me one spare spoon for the day. If I do use it for that, I know I will need to get to bed earlier and sleep later as I’ll be useless in the morning. Life-style-tip, having batch-cooked and running a pantry saves me; because when I’m totally fried, it is very rare that we as a family won’t have something to grab and go for lunch or to nuke when we’re home in the evening for dinner.

Saltwater came out just as my heyday of clubbing in Eastbourne was coming to an end. In those days, we didn’t have the Spotify, so would you believe, I never knew what it was bluddy called! In a pub in deepest Wiltshire, I was behind the bar, on a walk around collecting glasses, the DJ put it on so he could have a pee-break. Crossing the dance floor, I asked him ‘What is this called?’ From the next morning, first via Napster.

Around the same time; we worked it out it was within the same month, the husband walked across a dancefloor in a pub in Townsville to ask the same question. About as far away from Wiltshire you can get. He still loves it too.

I was in Coles supermarket in the town we used to live in before we moved to Regional Victoria. I got to the tills and freaked out, leaving my shopping behind. I took our son and just bolted to the car. I thought I was having a panic attack, or extreme anxiety. Nope, I was again overstimulated, overwhelmed and overambitious about what I needed to get done.

The husband and I were both working full time, our wee man was in nursery full time. However, I wasn’t being paid for nearly six months of the year as the child care rebate cap (subsidising care for working parents), mostly being that around each January if you work full time you will hit the ceiling of what is paid to the centre. Leaving you to pay everything. Which means, my entire take-home wages went on fees from January through the end of June. I’d get a tax rebate at the end of the financial year, we’d pay some off what we’d had to put on the credit card. Wash and repeat for six years.

The husband was trying to keep it all together at his work, heading into the city from our suburb, getting up and onto a train before our son was awake. Our son was also picking up every single bug going, if he woke up poorly, I would be the one that had to stay home. When my six months trial period came up, the aforementioned eejit said ‘I don’t know if you’re suitable, you’ve not been in for a full week since you started.’ I had hysterics, took advice and offered to extend my trial period out for another six months to show that I was. There is more I could say here, but we’re going to leave it for now.

Being employed for over six months did mean I was able to access the EAP, (Employee Assistance Program). The Monday after the Coles trip the weekend before, I called the EAP from a meeting room. I said that I was having problems with my son. Reader, I wasn’t, I was in full flight mode and just pegged it out of Coles because my body told me too. My clearest memory was carrying him out like a surfboard when I shot out of Coles, I had put all my focus on us leaving. At the meeting, I was met with someone armed and ready to give me parenting advice. Not to talk me through having a meltdown myself, which is what happened.

From there I did get some regular counselling, but that eejit? I had to work late to go to appointments, even if they were over my lunch break. Did I mention disdain and disregard is something to look forward to working through with ADHD too?

You have permission to rest.
You are not responsible for fixing everything that is broken. You do not have to try and make everyone happy. For now, take time for you. It's time to replenish.

Learning to rest and recuperate is the hardest lesson I’m learning.

Writing about what I’ve been like my whole life, has taken me back to through time and place really clearly. I know we’re all struggling with time as a concept since 2019, it really has become more nebulous the world over. But that is what it is like for me, all the time. No pun intended. Whenever I’m going ‘home’, that is basically where I’m sleeping tonight. If I’m your guest wing, that’s home.

My sense of place and time is truly up the wahoo. If I say ‘A few weeks ago’, that could mean anything from about 2010 onwards. I’ll say ‘You remember!’ to the husband, and he’ll give me a blank look. I then have to go on a breadcrumb trail through people, places and things to get to where my brain is, leading him on a journey that I’ve just leapt to in my head.

My brain also fires off so quickly, I can forget what I’m doing, while I’m doing it. You know when you get up to go into the kitchen and forget why you’re there? That is me, daily. I live by lists, lists of lists, post-it notes, notes in my phone, a pad by my bed for when I wake up at 2am remembering something. I carry a note pad in my pocket at work so if I’m away from my desk I can pull it out. I can be found standing staring into space, pad and pen in hand, as by the time I’ve got them ready – I’ve forgotten what I’ve meant to remember. It is also my superpower though, as I can read a room and organise the shizzle out of anything because of what I’ve learned to do to organise myself.

I also didn’t realise until the past few weeks unconsciously since I’ve been in the workforce and flying a desk, I’ve set my day up by constantly drinking gallons of tea and water. Which means, I have to get up and away from my desk for a break. That was another 2am revelation that made me sit bolt up right in bed.

As I’m not aware of what is around me, I will walk into things. Fall over things. Drop things. I crash into people in the city, and not just because they walk so fricking slowly either. I am covered in bruises from walking into my desk; walking into walls or worktops; either opening the car door onto myself, or shutting the door onto my leg as my brain hasn’t yet got my leg in the car, before on autopilot it’s told me to shut the door.

If something is not in front of me, it does not exist. I love my bibelots as Georgie calls them, but if I have too many things around me, I get a bit lost. It’s great though, because I know when we go through the boxes of things in the garage over Easter, I’m going to see lots of things I’ve forgotten I had. As soon as I see it, I’ll remember. But seriously, the amount of

This has gone on a bit long so I’m going to leave you with a shining moment of ADHD glory. Every so often when I’m overstimulated and fretting about things, I will need ‘order and method’. Aside from buying a new notebook (the possibilities of them are endless. I can go into hyperdrive and go through the house on a purge and donate heaps of things to charity.

I used to live in a town with a fantastic second-hand bookshop. I’d take bags of books in, rummage around and come home with bags of different books #Bliss. One day I saw a book and thought excitedly, ‘I’ve not read that in ages!’ On the bus on the way home reviewing my bountiful haul, I opened the book up and saw my name in it.

I’ll tumble 4 ya

With thanks to Culture Club for the music, and the title of this post. Tumble turns are what you do at the end of the pool. This is the second in a series of posts talking about my late ADHD diagnosis, today I’m concentrating on swimming. Before we start there is a mild content warning with some of my other MH diagnoses. I don’t discuss anything, but the words are there.

I started swimming over the Easter holidays when I was 9 and my brother was 7. We lived in a seaside town, during the summer, we lived on the beach. Mum and Dad wanted us safe in and by the water. This was an intensive course, with lessons every day during the school holidays. Edit – Mum said I was 7 and my brother 5 years old.

On the first day, I’m in the first group. Water makes sense to my body; I just slide through it. If any of you have read Ian Thorpe’s autobiography, This Is Me! he describes what it feels like to ‘catch’ a perfect stroke. The water feels different in your hand, over your skin, when you get it right. Each stroke you try and replicate it, sometimes more easily than others.

Before the first week of my swimming lessons had ended, I was taken aside by one of the teachers, who was the wife of the coach at a local swimming club. I was asked to demonstrate what I could do after four and a bit days of lessons, about 2 hours total. I still remember showing her, over 40 years later; she pulled me out my lesson, to the middle of the pool (that I would later teach in for years). I remember how proud I was I could do something effortlessly, see previous post about not being able to do anything quite right…

That club told my parents they thought I was a future backstroke Olympian. From there on in, I was being coached and guided towards that. I was swimming training, land training. When I got to my early teens, I began lifting weights under supervision, and was given a diet to follow with ratios of proteins to carbohydrates. I had special warm up program to follow at galas. And because people were telling me to do it, I just did it.

Which is another way ASD presents differently with Assigned Female At Birth (AFAB). Because we as a society, have had it ingrained to pat little girls on the head. Telling them to sit down, be quiet, don’t fuss – there, there, there. And it is also partly why ADHD and ASD are mis-diagnosed for years in AFAB, because we don’t present like Assigned Male At Birth, and what a lot of the out-of-date schemas for diagnosis rely on. We don’t bounce around in chairs or charge around in the playground. Instead, we sit with our hands in our laps, bouncing our ankles, twiddling our hair, and in my case, biting my nails.

When I was 10 or 11, I was flying at swimming. And I mean flying, competing against people 8-10 years older than me and beating them. I was invested in this, simply because I enjoyed being in the water. It was a safe space for me. I can remember one Saturday morning, watching my brother’s swimming lesson. I was sat on the pool deck, next to Mum, sitting on a wooden bench in full sun, wiggling as the bench was scratchy under my butt. The urge to jump in, clothes and all was intense. It was a real yearning. The water made sense to my body, still does. Also, as I had to concentrate on constantly improving my stroke, focussing on what my body was doing, my mind was relatively quiet.

The constant raising of my heartbeat also squirted enough dopamine into my bloodstream to help me concentrate at school. I hate to imagine what my life would have been like if I didn’t have swimming as a framework to hang it on.

The only other time my mind was silent, as I said in my previous post, was when I was reading voraciously. Reading by my nightlight if I was ‘this close’ to finishing a book, waking up fuzzy headed and grumpy the next morning.

One day, I was maybe 11 years old. I was pulled aside after a training session and got told that I needed to give another child the backstroke, because that was the only stroke she had. I was told, I was such a good all-rounder, that I could afford to give it to her. What this means is in swimming galas, I wouldn’t be the first choice to swim backstroke for the club in my age group, this other girl was being put in to races instead of me. Even though I was faster.

Remember, I was predicted to be a future Olympic champion, that disappeared. I don’t know what happened for this decision, maybe her parents talked to the coach. Mum and Dad moved my brother and I to another club.

That rejection hit hard. I got in the pool, and it was like I’d forgotten how to swim it. From there on in, I managed to get through individual medley races, but I felt like I was thrashing around, not getting anywhere. My only explanation is that my muscle memory had switched off with the trauma response.

It wasn’t until I was pregnant with our son, who I had at 36, and I found myself in an outdoor pool doing laps before work. It was a beautiful morning, I thought to myself, ‘I want to look at the clouds.’ I suddenly found my stroke again, because there was no pressure on me.

Before I was diagnosed with ADHD these were my diagnoses.

  • IBS, I also have coeliac disease, so the symptoms do cross over, but IBS is really exacerbated when your system is on fire with cortisol.
  • Generalised Anxiety Disorder
  • Complex Anxiety Disorder
  • Complex PTSD
  • Trauma
  • Depression
  • Suicidal ideation
  • Body Dysmorphia

It is really hard living in your skin, just hanging out, taking up space with the carbon form that carries your soul around. But your soul is wrong, different, odd, strange, quirky (if you’re lucky).

It’s really hard constantly being told you’re not worthy. That you don’t belong. Being bullied day in, day out at school. That you look just like a boy. That you look wrong with short hair, that you don’t like wearing dresses to parties. That you’d rather be colouring in, reading, cross-stitching, patchworking until your eyes give out. That people don’t understand that you’re happiest in water; be that at the beach, or in the pool. Water gives you something that is lacking across your life, and you’re proud of what you can do with it. During the summer holidays, you will float on your back and watch clouds go by until you get called out the sea to go home, to be able to do it all over again the next day.

I’m going to blow smoke up my butt here. I am a really good swimming teacher. I have taught thousands of people either to swim or to improve their strokes, because I can explain to them what the water feels like when they’re doing it right. And can give them shortcuts to help them find it when they’re doing it wrong. I love teaching adults, particularly people who have feared water their whole life. I am loudly enthusiastic even when people learn how to stand up for the first time. In my lessons I would encourage all of them to cheer each other on. The joy it gives everyone in the lesson when someone starts kicking and moving is beautiful.

Back in 2002 or 2003, I was rebooking a swimming school for the new term. Phones were ringing off the hook, people queueing out the door. I stood working the computer, taking details of the people queuing up, one customer came up and said ‘I’ve been told I need to book in with Emily’, I said ‘That’s me!’ At another pool, another child talked about me so much, her pregnant aunt called her new daughter Emily.

But living with ADHD can mean rejection sensitive dysphoria, an extreme reaction to an outcome that other people wouldn’t worry over. This is what I had when I was told I wouldn’t be swimming backstroke anymore. This has also happened numerous times at work; as we’re concentrating on swimming, I’ll share this story then we’ll close, as I’ve rattled on long enough.

At one leisure centre, I was covering a lesson for another teacher who’d called in sick. These were tiny tots who hadn’t met me before, as at this pool I specialised in the school classes, as I could handle lots of children in one lesson. A couple of parents didn’t like what I was doing, only as I was different to their normal teacher, they stood on the poolside to watch me. The children hadn’t met me before, I’d got them all sitting on the steps to the pool playing with toys, blowing bubbles and a few games, just improving their water confidence to ease them into the lesson. When I stopped the lesson to ask the parents to go back to the viewing gallery, they called the Duty Manager out instead saying that I didn’t know what I was doing. We went back and forth a bit on that I’d been teaching for at least 10 years now and I did know what I was doing. The DM came onto poolside and backed them up – ignoring the policy. My reaction isn’t one I’m proud of; I got out the pool in tears and left him to sort them all out.

Because I knew, (know), I am a good teacher, my pride was hurt as I wasn’t listened to, let alone backed up by the DM doing his job.

A sense of hubris is always fun to live with too. When we know we’re good; we can be insufferable.

Not long after that, I stopped teaching swimming and never got back into it. It was like the backstroke thing all over again, it felt like it was taken away from me. Instead of me being able to give it up when I was done. RSD is what I think I’ve been living with as part of my ADHD, not some of the other labels I’ve picked up along my travels. Particularly when RSD ruminates, it can present as anxiety and depression, spiralling down further as your brain believes its’ thoughts. Remember, you are not your thoughts, you are thinking your thoughts.

But there’s more on that in my next post.

Returning to self

This is the first in a series of blog posts about my recent ADHD diagnosis. I wrote most of it in one sitting, and kind of reached a natural pause (more like screeching to a halt), but here I am concentrating on school.

When you don’t fit in, other people’s social norms become layered on top of you. By reacting to their behaviour towards you, you stop doing (or curtail) what makes you, you. As Oh says in Home, “The true is, among Boov, I do not fit in, I fit out.”

Becoming homogenised into ‘acceptable’ is hard work. It is draining, soul destroying, and it breaks you. The moment you either blurt out something that you want to share; or if your outside of school / work / social group hobbies are a bit different to everyone else – life gets harder again. The layers of pain, shame and bewilderment take ages to scour off, if you can.

I didn’t want Barbies, I wanted the electronic Battleship. I didn’t really know what to do with the dolls, but I changed their clothes along with everyone else. At home, I loved building houses from Lego, would fully furnish them with itty bitty furniture. I also oved reading, but they were the wrong books.

I lived inside Swallows & Amazons, being handed the first one to read when I was 7 years old and had exhausted all the books at my grandparents. We lived there for nearly a year while our house was being renovated, as I moved up to Junior School. Over that year, my reading increased from ‘Oooooh!’ to voracious.

Instead of playing in the playground all the books other children had read, or recreated from what was watched on TV the night before, I wanted to be Captain Nancy Blackett. I tried to explain the plots of the books to my friends at school but was met with blank faces. Excluded from the group while they played keeping house. I tried to play Swallows & Amazons with my younger brother, but he’d not read them, and wasn’t interested in boats.

From memory, I only managed to persuade him to play this with me once, we were on holiday in Great Gransden, an old tree had fallen down at the back of one of the fields on the campsite. In my head it was my boat, I borrowed three of the poles from the windbreak and rowed all over the lake. Our Dad took a photo of us, my brother sat before one of the poles stuffed into the tree as a mast, I’m wielding the other two poles like oars, my face split from ear to ear in a grin.

(I’d still love to learn to sail. I’ll put that on the list for next year, I’ve got enough on my list for this year).

I was happy enough though, because I had John, Susan, Titty, Roger, the Swallows, and Peggy and Nancy from the Amazon to keep me company. In my mind I sailed from one side of the lake to the other, built campfires, boiled a kettle for tea, and had picnics of bread and marmalade.

This sailing knowledge came in useful one day, when we had an incursion with actors putting on a play, when one of them asked what the zig-zagging against the wind to sail was called, I blurted out ‘Tacking’ before anyone else.

Excluded from the group, know-it-all.                               

The girls played different games, guessing our favourite colours, what colour our bedrooms were painted, our middle names. By calling letters out, we’d move forward on a paving stone until we got to the other side of a courtyard to win. I didn’t have many letters in my name, and they were surprisingly easy to not be called out. Over and over again, I’d be last, laughed at. So I started adding in middle names to move forward.

‘That’s not right, you’re a liar!’

Excluded from the group.

Or when Uptown Girl was massive, friends of mine sang the song in the playground. Excitedly, having grown up on Billy Joel, I asked them to sing other songs of his. They were all right there in my head, my parents had them on LP, with cassettes for the car, then days of days, slowly brought all his albums on CDs to play. But I was met with blank faces again, because why would they want to sing anything from The Stranger or Glass Houses? They only knew a couple of songs from An Innocent Man.

Excluded from the group again, weirdo.

To this day, I hold swathes of song lyrics in my head. I can sing musicals from memory, It would drive my brother mad when I’d listen to songs on the radio, taping the top 40 onto cassette to listen to through the week, by Tuesday I’d have all the songs ready to sing along to. ‘How do you learn them so quickly?’ Particularly in the days of the Music Factory of Stock, Aitken, and Waterman, sometimes I’d only need to hear the song once or twice and it was there.

I also used to be able to hear a song and play it back on the recorder and sight-read music and play it accurately and consistently. Now, I don’t think I can even read music off the page. One day we had a performance at school, I wore a pink jumpsuit, (Hey, it was the 80s! I loved it though, it buttoned up like a shirt), not knowing I needed to be in uniform. Instead, I was shoved into the changing rooms and told to swapped clothes with Joelle. I stood in her school dress, crimson with embarrassment and tried to concentrate on playing.

When I got to Senior school, my recorder playing, (both the normal or descant, and the larger tenor version), was expected to be converted to clarinet. I was excited to learn this new instrument, but when it arrived, I hated the feel of the reed against my lip. I wanted to carry on noodling around with the recorder, but there wasn’t a place for that either in lessons or in the orchestra. So, I stopped playing altogether. Poor Mum and Dad, they would have heard all sorts of music from my bedroom, for it to stop completely.

Sweet Valley High books were all the rage by the time I got to Senior school. I didn’t particularly like them, but needing to fit in, I read them. I could read a book in a day and retain the basic, formulaic plots. Being able to talk about them meant I did fit in, but the waiting list at the library was long and we didn’t have much money to buy them. So, I stole them. Walking out of WH Smiths with bags of them. In a fit of overwhelm one day, I threw my entire bedroom contents over the banister and down the stairs.

I can remember Dad asking, ‘Where did she get the money to buy these?’ None of us wanting to address the elephant in the room. I didn’t have the money. But what I wanted or needed to fit in, I would take.

I hate this about myself.

I know now after doing more research into ADHD, impulse control is a massive indicator. The list of things I stole in my teens and early twenties is wide, varied and long. I’m not excusing my behaviour. I’m trying to understand it.

I’d be asked to do something, by the time I’d got to where I needed to do the thing, I’d have forgotten about the thing.

If I have no interest in something, I’d rather not do it. At all.

See barefoot bowls, no thank you. I don’t know if this is a legacy of being bullied because of my feet, or a legacy of being an absolute klutz with any type of ball.

Or going to see Cats when I wanted to see Starlight Express? I’m not going on the excursion at all, even though I respect democracy and we all voted on it; I know would make it miserable for everyone else.

This was really hard to manage at school. I wanted to study the period of history from the Tudors to Victorians, instead of Modern World History at GCSE, because I’d done the 20th Century to death and was bored of it. But as there were only 8 of us who wanted to study it, the school couldn’t put it on as an elective exam.

Simple solution. I didn’t study, at all. I relied on my prior knowledge to scrape a C when I was predicted an A, pissing the teacher off good and proper.

I would question teachers, ask them things over and over to explain something that didn’t make sense. Trigonometry and percentages are a closed book. I can do percentages only if I look up on google how to do them, every time. My maths teacher would explain things the same way over and over, I didn’t understand how he explained it. But he wouldn’t change the lesson so I could understand it. Instead, he shouted and humiliated me for not getting it, when everyone else did.

When I was taught how to teach swimming, I was taught that I would need to show some people how to do the strokes, I would have to describe how to do the strokes and I would have to assist some people to do the strokes. Some people need a mixture of all three to learn something new.

I was in trouble a lot for being disruptive and talkative in class, I’d do the work set for an hour in 15 minutes, ask for more to do but not be given anything. I would make a lesson last an hour, my speed and ability to absorb information slowing down. There’s nothing like a once-labelled gifted child being struck into inaction with perfection paralysis, or unable to start something altogether, because as we progressed through school we couldn’t learn at our own speed.

At times, I would be put on ‘report’ where I’d have to carry a card around with me. The teachers would initial the card, but only if I’d behaved, in their lesson. If I handed my homework in, I’d get another initial, but I’d forget to do my homework.

Sometimes I’d also forget the card, and the length of being on report would be extended out. Or I’d leave the card in a pocket in my uniform, it would get washed, and it would be extended out again. I’d go into detention to do my homework, then lie to my parents to say I’d missed the bus home.

I struggled to fit in. I’d work out the current trend, hop on it, it would change, I’d be excluded again. I was bullied for my height, my feet, my hair being short. For swimming, for not dancing; for laughing too loud; for being too loud; for when I was having fun playing; it was the wrong kind of fun. I liked the wrong kind of music.

I was bullied for having zero spatial awareness with any ball sports at school. Be that field events from athletics, tennis, hockey or netball. In netball, I was parked at Goal Defence as I was so tall, I would just stand there and block everything. One game I mishandled the ball, dislocated and broke a finger. The teacher watched me pull it back into place (not recommended) but didn’t send me to the medical room. Particularly frustrating as two minutes after it happened, someone got the ball bounced off the ground into their tummy, burst into tears and was despatched to the medical room. Maybe it’s because I didn’t cry, I just looked down and thought ‘That’s an interesting angle.’ After hours at emergency waiting for an x-ray, I had it taped to another finger for weeks. Going into school with it swollen and purple the next day. Dad was furious.

I was a preternaturally gifted swimmer, there’s more on that coming in another blog post, but because I was so good, the teachers expected it to cross over to other sports. Not for me it doesn’t. I’m so clumsy I’m still covered in bruises, and it was at the GP suggestion to assist with my brother and I’s coordination issues, we went swimming in the first place.

I have no poker face to hide my emotions, my face will tell you what I’m thinking, even if my mouth doesn’t. There is nothing like the look of disdain across my fizzog for something I do not want to do. I can’t fake it for politeness. Let it be known, I do try, but then I spiral into anxiety. Which presents as a short temper, which if I can’t wind down, ramps up to aggression, or paralysis. Fight, flight, freeze – or disruption, disenchantment, disconnect and defiance.