ADHD

DIscovering me

| skwarepegrowndhole

On the 1st March 2025, I was officially diagnosed with ADHD. I was 53 and 3 weeks old.

I knew I was, deep down, but there was still doubt. I self diagnosed a few years ago when we were going through diagnoses with our children, but I didn’t tell anyone that I thought I was for ages, as I felt like a fraud. I was jumping on their bandwagon. I couldn’t have ADHD as I was a woman in my 40s. I was just a bit scatty, very messy, had lots of hobbies that I’d started and then got distracted, often felt like I didn’t belong, and the fact that I left everything until the deadline panic hit was because I was lazy.

In January 2024, inspired by a friend who had been diagnosed as an adult and had found it liberating, I spoke to my GP and then the practice mental health nurse, and using NHS ‘Right to Choose’ I was referred to Psychiatry UK and put on their waiting list (I wrote about this last year, to read the post click here). Just over 13 months after my appointment with the nurse, I had my assessment online.

I didn’t know what to expect, which sounds still as, at his request, I sat in with our youngest when he had his assessment. I was really nervous. The doctor was nice, tried to put me at ease, and then he started asking questions. Some of my answers surprised me – one was about how I did at school and in later education. I can’t fail, and I won’t fail. This isn’t because I’m a genius, it’s because I can’t. If I think I’m going to fail, I quit. And if I do a course, I have to do my absolute best and come as close to the top of the class as I can. If I can’t do well, I won’t do. The doctor seemed very interested in that!

Another question I remember clearly was what would I do if all the things on my to do list were completed. If I woke up tomorrow without any spinning plates (my words here, not his), without anything I wanted or needed to do, how would I feel.

I panicked.

I could not (and cannot) imagine having nothing to do.

I must have looked terrified as I stuttered ‘I don’t know. I have no idea. I can’t begin to imagine what that would be like’ as he told me not to worry and we’d move onto another question.

At the end of the assessment, he told me that there is no doubt whatsoever, I have ADHD. The assessment ended, I told my family, and then I went and curled up on my bed, and I cried.

I cried for the 14 year old me who watched the popular girls at school in awe, not knowing how to be like that. I cried for the younger me who always felt like an outsider. I cried for the me who couldn’t get her written work to match her classroom knowledge. I cried for me now, only just beginning to understand that I was never broken, I wasn’t an alien, and I was always enough.

Eight weeks on, and I’m still doing lots of self-reflection. I’m now seeing where I have masked and camouflaged, and I’m still not entirely sure how I can free myself of masking – and I’m pretty sure I will always camouflage and mirror, especially in social situations.

I don’t necessarily wish I’d gone for diagnosis earlier as I am happy with where I am and who I am, and even if I did regret, it wouldn’t change anything. However, I wish I could go back and hug my younger self and tell me it will all be ok. I also wish I could go back to when our children were little and realise that the behaviour I saw as normal wasn’t normal for everyone. It’s hard to see atypical behaviour when in your world it’s typical. But I didn’t know then, and I have to forgive myself.

This brings me to getting a little political. In a week when RFK Jr has talked so negatively about autism in the US, and Farage as spoken about over diagnosis in the UK, it’s important to remember that there hasn’t been a huge increase in neurodivergent conditions, we’re just beginning to see them. When I was at school in the 1980s, nobody talked about ADHD, and it definitely wasn’t something that would affect an academic, well-behaved girl, so I was missed. There is a meme on social media saying that before 1930, nobody knew about Pluto – but it was still there! It didn’t suddenly appear, it just hadn’t been seen or discovered. It’s the same with ND conditions. And as they usually have a genetic link, quite often a child is diagnosed, and then the parent(s) have a lightbulb moment, and also get assessed – and then you look at other members of the family who were seen as being a bit ‘quirky’, and suddenly it all makes sense.

ADHD, Autism and other ND conditions are not diseases, they are not caused by vaccines, they are not caused by chemtrails or anything else like that. They are a different way of thinking, being and processing. We are different, not less. We have been here since our ancestors came out of Africa, and probably before that. We’re just not hiding any more.

I’m back!!

| skwarepegrowndhole

I really enjoy blogging – I find it cathartic and a positive way to connect with people. When I blog regularly (or semi-regularly) it helps me manage my mental health, and from the comments and messages I get, it helps some of you as well. But sometimes life gets in the way, and then the habit of blogging slips. When I get out of the habit, it feels like it’s been ages since I wrote anything, so I put it off for another week, and another week, and then life gets in the way again, and then here we are, almost a year since I last wrote anything.

My hope is that I will spend Sunday mornings when it’s just me and the dogs awake to write – I’m not promising a blog post every week as I have other writing projects I’d like to get started, but most weeks (fingers crossed).

So, what’s been going on since last May? Well, I officially have ADHD – I had my appointment on the 1st March, and it was quite an emotional hour but at the end I was told that I definitely have ADHD. The relief was huge, and the mental and emotional rollercoaster since then has been a little turbulent, but worth it. I’ll write more about this and the impact it’s had on my well being in my next blog post.

My research has finally got ethics approval, so this starts in about 3 weeks, which is incredibly exciting. To think that 3 years ago I didn’t know about the EdD program at the University of Sheffield, and now I’m coming to the end of the third academic year, about to start interviewing and talking to participants, and within 18 months I could (although it may take longer) have a finished thesis. Exciting but very busy times lie ahead.

Thing 1 and Thing 2 have both had other diagnoses in the last year – both are ASD and ADHD although they both present very differently, which is no surprise. I think it’s been a relief to both of them to know that what they suspected was right, and that the missing pieces in their understanding of themselves are now there, more or less. Diagnoses are there to help us understand ourselves better, as well as for others to understand. If we struggle to know who we are and how we function, it becomes hard to advocate for ourselves – another future post will look into this in more detail.

I want to build Skware Peg as a community for anyone who feels that they don’t quite belong withing societal expectations. Diagnoses are not needed, and I want this to be an accepting, safe place for everyone – especially with what’s happening in the US, and to a lesser extent in the UK.

If you have any suggestions for future posts, please message or comment.

And now it’s my turn

| skwarepegrowndhole

I am 52 years old, and I have always felt like I was on the outside looking in. Unless I am really comfortable in your company, I feel awkward in social situations. I am so messy, I go from one hobby to another, I lose my keys, bag, glasses, phone on an almost hourly basis (and I regularly look for my phone while talking to someone on said phone) and I never feel that I am enough, or that I do enough.

Don’t get me wrong, I have self confidence & self belief. I know my value, and I know that I am good at my job, that I can do almost anything I put my mind to, and I am a fixer (clothes, fencing, DIY, people…), but I often feel that I am different. It’s my normal, and I just thought it was one of those things. Then I had children who ended up being diagnosed with ADHD, ASD and dyslexia and I started to wonder. Both of them are now seeking adult diagnoses for other conditions, and I felt that, ever so slowly, that maybe, just maybe, there was a reason that I felt how I felt.

I read lots of articles, looked into the epigenetic basis for neurodivergences, and so I started saying ‘I think I have ADHD’. That felt ok, I didn’t feel like a fraud, so then I said I was self diagnosed with ADHD. Again, it felt ok. However, it still didn’t feel enough. Some people raised an eyebrow, but I am my own worst critic. On dark days, I doubted self diagnosing. I felt I was just making excuses for a messy house, for not completing tasks, for feeling overwhelmed with life, for having a burn out day. Self diagnosis wasn’t enough. I needed to do more.

Inspired by my children, I did a few more online assessments, and then I emailed the GP. I had a phone consultation with the mental health nurse, and then through NHS Right to Choose, I was referred to Psychiatry UK back in January.

I heard nothing, so my self doubt came back. Maybe I didn’t have enough symptoms to be referred, maybe it was all just in my head and I was just a very a scatty messy person. I messaged the GP admin people who said they would look into it, and still I heard nothing.

And then today, I had several emails, one of which contained the following sentence:

Great news! We have reviewed and accepted your referral for your ADHD assessment.

I almost cried. My referral has been accepted. I am going to get an ADHD assessment. I am not broken. I am finally going to get an answer.

I read the following poem recently on Insta, it’s by Jessica Jocelyn (letters.to.anna on Insta), and it sums it all up so well.

behind every late diagnosed woman

is a little girl

who knew this world

was never made for her

but could never explain why.

I have supported my children through their battles, and I will continue to do so, but now it’s my turn. I need to support myself, I need to be kind to myself, and I need to battle for myself as I have battled for everyone else.

It’s my turn now.

And now it’s my turn.

| skwarepegrowndhole

I advocate for people, I tell parents how a diagnosis is a lens not a label and it allows children to be seen and understood. I tell them that the ADHD/ASD is always there, it’s just a diagnosis opens a door to understanding and help. And yet when it came to me….

I self diagnosed with ADHD several years ago – part of the reason why we didn’t look for an ADHD/ASD diagnosis when our children were young as we didn’t really see anything different about how they behaved or learned. They may have been a little more intense than we were as children, but the things I used to do (pluck quilts, draw on anything, take things to bits, climb anything and I was a rubbish sleeper) and to some extent still do (although I’ve only ever plucked on feather quilt) were pretty much what our children did.

So why only self diagnosis? Maybe because ADHD wasn’t a thing when I was growing up, especially not for girls. Looking back at my school reports that frequently talked about how good I was in the classroom but how my homework and written work didn’t quite match, and how I could be argumentative and was good at debates, or thinking about how I used to be dared to distract the English teacher on Friday afternoons in 6th form so we could have a discussion rather than a lesson, it’s clear that the signs were there at school as well as at home.

But it just wasn’t a thing – and I did well in education. I passed all my GCSEs and A-levels, even if my grades were not as good as predicted. I then decided not to go to university at 18, and several jobs before getting married and then having our eldest. I went to uni as a mature student with a toddler who didn’t sleep, a husband who worked long hours, a night sitting care job 2 nights a week and an hour commute to university. Spinning plates is a understatement, but my hyperfocused mind just did what it needed to do, and I graduated top of my class.

When I started teaching, I taught whatever I was asked to teach, and I was good at it – I’m still in contact with so many students (hello if you’re reading this), and I did my teacher training while I was teaching (which is common in colleges). I then started a part time Masters degree while teaching and co-running a business and now with a toddler and a 10 year old, neither of whom slept. Spinning more plates, but I did it, and came top of my class again.

The more I have to do, the more I thrive. Today I am a curriculum lead in a small special school, I blog, I have written & self published my first book, and am now working on a book proposal to traditionally publish my second. I live on a small holding and my husband and I are setting up a brewery. We still have our family IT business and I do the accounts for that. Our youngest is struggling with uni life so I am on tram transport 2 or 3 days a week. And on top of all that, I’m doing a self funded part time doctorate. Spinning plates – again!

So what gives? Well, I’m messy. Our house is never spotless, and is often verging on feral. I have so many unfinished books and crafting projects (because I need to have a hobby on top of everything else) and sometimes – probably much more often that I think – I am grumpy and moody.

So, yeah. Self diagnosed ADHD, but I say it almost as a joke.

Not any more. A couple of weeks ago, after helping our youngest fill out his form/test for ADHD referral, I decided to take the test myself. On the ADHD Self Report Scale (ASRS v1.1) Symptom Checklist there are 18 questions. I answered honestly, and I ticked 17 out of the 18 boxes.

I decided self diagnosis wasn’t enough but I know that our GPs our incredibly busy, and I didn’t want to take up an appointment, so I emailed saying that I thought I might be ADHD, and could I maybe talk to someone about the possibility of maybe getting a referral. I tried to make it as ‘sorry to bother you and don’t worry if I can’t’ kind of language.

A text came back within an hour offering me an appointment with the mental health nurse. I felt a huge weight start to lift off my shoulders. Unfortunately the first appointment was cancelled because the nurse was ill. I had the phone call at work, and I cried on the way home. That weight of spinning plates was pressing on my shoulders again. I only had to wait 2 weeks for the new appointment, but it felt like I was going to be waiting for ages.

I had my appointment last night, and yes, I am going to be referred for ADHD diagnosis. When I was talking to the nurse, I said (without thinking) that I wanted a diagnosis so that I could be kinder to myself, and that’s the main reason why I am now on the waiting list. I need to be kinder to myself. I have an amazing brain that does amazing things and is excellent at spinning plates, but I don’t see the mess on the floor, and I have just remembered as I type that there’s a washing machine full of washing that was supposed to go on the line this morning before I left the house. Oops. I am also brilliant at choosing and writing cards, but then finding them weeks later unposted. I start craft projects all the time and if I don’t finish them before I get bored, I just leave them and start something new.

But it’s ok. It’s how I’m wired. And now I have finally taken my own advice, I have made that call, and I am on the waiting list.

Now it’s my turn.

What happens next….

| skwarepegrowndhole

As SEN parents, so much of our time is taken up with battles – battles with the education system, battles with school, battles with healthcare professionals, with policies, with how to juggle our time, and the biggest battle of all, the ‘should’ve, could’ve, would’ve’ that runs continually in our heads. So what happens when they leave formal education? What happens next?

I think any parent will tell you that parenting does not stop when children reach 16, 18 or 21. We are a parent for life. We worry, and I’m sure when it’s my turn to become a grandparent, I’ll then have children and grandchildren to worry about.

But I think it may be slightly different when you are a SEN parent.

In August, after A-level results were released, we did not have any children in formal education. We had done it, we had steered 2 children through their Early Years Foundation Stage (EYFS), all the key stages, GCSEs, vocational qualifications and A-levels. We were done – pass the champagne please, our days of battling are over.

HA HA HA HA HA HA HA!

Not a chance.

I should have known, really, as our eldest had issues with his first year on his first degree, and I had to navigate the complexities of him being over 18 but still needing support. Many angry emails and phone calls meant we eventually got problems resolved, but the stress of it all triggered depression and he ended up leaving uni at 20 – but went back in lockdown and graduated in 2022.

Our youngest had a completely different experience, but my role as a battling SEN mum has continued. I had learnt from the earlier battles and so had things in place that would allow me to talk to people if needed.

I’m not going into too much detail here, as he’s still in his first semester, and the university have been incredibly supportive, once we got to the root of the problem. But living in halls triggered all sorts of feelings, so after lots of discussion, he is living at home and commuting – and through witchcraft, stroppy emails and pleading, he’s been released from his halls contract. The course is not as academically stretching as he thought it would be – but he has been assured that it will get harder. Lectures with over 200 other learners after being used to A-level chemistry lessons with 4 other teens where there was lots of discussion, have taken a lot to get used to. There were times when the goal was to make it to the end of the day, then we extended to the end of the week, the month and now the first term. A month of exams, and then he’s done the first semester, with optional modules picked for the second one. After thinking he might not be able to stay until reading week, we’re now pretty sure he’ll make it to the end of year one – and probably beyond.

I don’t think that this is just due to protected characteristics. This is the cohort who sat their GCSEs in classrooms rather than exam halls. When they were supposed to be out socialising, they were wearing masks to go to the supermarket with their parents. When they were supposed to be rebellious, risk taking teens, they were careful not to take risks as they didn’t want to infect elderly relatives. They are the Covid cohort – and this has impacted many of them in so many different ways.

In our family, though, protected characteristics have made things even more difficult, but we’ve got through it. I reduced my hours at work so that I could do pick ups & drop offs (which I have really enjoyed – early morning conversations with my teen when stuck in traffic have been a great start to the day (no sarcasm, I thoroughly enjoy the journeys)), we’ve supported him seeing our GP and looking at ADHD diagnosis this year, we’ve emailed mentors when needed, and have encouraged him to ask for extra help when needed – and, despite the warnings from school – he has been given everything he needed, and more.

I am disappointed for him that he hasn’t had the start of uni that he envisaged, I am sad that living in wasn’t an option in the end, but I am so proud of him for getting to the end of this term, for taking control of his mental health, asking for and seeking help when he needed it, and it’s actually been lovely to still have him living at home. Our eldest moved into his own home & got married earlier in 2023, so it would have been a very empty nest if things had worked out how we all planned.

So, what happens next? It seems it’s more of the same, but with more autonomy for our teen to sort things out himself; in the crazy circus of education, I have gone from the lion tamer to safety net, and that’s exactly how it should be. I will always be here, for both of our children, for as long as I am able, to offer support, words of wisdom and to be their safety net – and I am always up for taming lions if the need arises!