ND

Holidays

| skwarepegrowndhole

This isn’t the post I was planning to write today – it was supposed to be a follow up blog about GCSE results that was going to be very similar to my A-level blog last week, but sometimes you just have to go where the words take you, and today, they have taken me to holidays. I am writing this on the Sunday of the Bank Holiday weekend, but I will publish this once we’re on our way home.

Until this year, we have managed to have 2 holidays in the UK each summer – which makes us very lucky. I used to work in Further Education, and the college I worked at broke up for the summer at the end of June/beginning of July. Our children had scholarships to a local private school (again, the fact that we found the money for this even with the help of scholarships makes us very fortunate), so they broke up at the beginning of July. This meant that we could get away for 2 weeks before state schools broke up, when the prices were a little cheaper, especially when we headed to Cornwall. Then, in August, we went away with my parents for a week, usually to Norfolk and we shared the cost, and we also shared the childcare which was a huge thing when our children were younger.

This has continued every year for the last 15+ years, but the teaching job I have now follows school holidays, so because my contract is term time only, we’ve had to stop going away in July. This year, I decided that we would come to Cornwall for 2 weeks – and our second week would be the bank holiday week (I’m sitting writing this in our holiday home). We would come down for 2 weeks, with my parents joining us for the second week, so it was like a hybrid of the holidays we’ve had until this year.

We are having a lovely time – we’ve been to the beaches, but have behaved like locals (I grew up in Poole, Dorset so know how to avoid holiday makers in the summer) and got to the beach early and left when everyone else arrived. We’ve been to our favourite eateries, but have booked tables or got there early to avoid too many crowds, and have been to Newquay and Padstow, but, again, have got there early. It’s been a lovely holiday, and apart from missing the dogs and the cats, I’m in no rush to get home.

However, it is busy. We tried to eat at one of our favourites, and the restaurant was fully booked, even though we had got there late afternoon/early evening, but we could eat at the bar. The first table away from everyone smelt of bins, the second was next to where the band was setting up, and the third was under the speaker with uncomfortable seats. We left and found a plan B that was just as busy, but had outdoor seats. We ordered food (pizzas), had a drink and we left to eat at our holiday home.

This afternoon, our youngest has chatted to me. It’s too busy for him, and he’s also realised that 2 weeks is too long for him. We’ve already booked to come back at Easter, but because he talked to me, we already have a plan. He’s not a child any more, he’s a young adult who is happy catching trains, so at Easter, he will either come with us and train home early, or train down a few days after we arrived and stay til we come home. Problem solved. This holiday, though, he’s stuck with us til we come home on Thursday.

Has this conversation stifled or impacted our holiday? Absolutely not. Has the further revelation before I started writing that he’s spent a lot of time masking this holiday when we’ve been out, so is feeling tired and headachey impacted it? Maybe a little bit, but it’s his holiday too, so I need to be aware of how he’s feeling, and I need to make sure that I do everything I can to help him not to be in too many places where he has to mask. We have talked, and we have a plan.

Looking back, 14 days in a very busy part of Cornwall over the bank holiday weekend wasn’t one of my better ideas, but we live and learn. I’m not perfect, I make decisions that maybe I shouldn’t have done, but I made them with the best intentions. What we can do, is make sure we all have fun on the few days we have left down here. I won’t try and persuade our youngest to come to the beach or go anywhere where he’ll have to mask, and I won’t do that to our eldest either. We may all have to compromise a little bit, but not when it comes to their sensory needs. No compromise there.

We have a day out planned, we know where we’re eating if we’re eating out, and we know that we can all enjoy the next 4 days with minimal masking. I need to breathe, not feel any blame, and know it’s one of those situations that we learn from, and then move on.

For now, I’ve checked the weather so tomorrow is going to be a beach/chill at the house/read kind of day, Tuesday isn’t as good, but we’re off out for the day, and Wednesday will be a quite day with some walks before frantic cleaning and packing as we head back home on Thursday, hoping to avoid the ‘last weekend before the schools go back’ travel chaos on Friday and Saturday.

let’s talk pants

| skwarepegrowndhole

First of all, if anyone who knows me reads this, I will be sharing some info about clothing and underwear preferences, so if this makes you uncomfortable, it’s probably best to just skip the rest of this blog and come back next week.

If you spend time on ND forums and social media pages, as I do, you will have noticed that there are lots of questions about clothing for young ASD/ADHD/ND children. Where can you get socks without seams? What soft trousers have people found? How do you persuade a young person to get dressed before leaving the house? And many, many more. These questions are usually met with a plethora of replies, many really good and useful, some not so useful and some, to be completely honest, a little too out there.

However, once our children get to teenage years, and as they, and we, grow older, we are trying to find a compromise between our sensory needs and what the fashion industry says we should be wearing – in terms of clothes, make up, aesthetics and even body size (a really good insta follow that talks a lot about body image and the media is @alexlight_ldn).

I’ve always managed to (more or less) do my own thing in terms of clothing and body. I’ve always have my own look (jeans, T-shirt, hoody, flip flops/sneakers/ballet pumps) that hasn’t really changed that much over the last 40 years. Teen me wouldn’t look that different to 50s me, and I’ve even gone back to the double denim I loved in the 90s! But I have still bowed to fashion pressure, especially when it comes to underwear.

I have wasted so much money over the last 40 years on pretty bras that are just uncomfortable and not fit for purpose. Underwired, no wired, push up, push out….the choices go on and on, but there doesn’t seem to be a category in any lingerie department for ‘might not look that pretty but keeps everything in place and is comfortable all day long’. On a normal day, who is going to see your bra? Does it matter if it’s not lacy, or if it is? Does it matter if it matches your pants? Nope, not at all.

And now I’ve mentioned pants…. like bras, I have tried a variety of styles, fits, colours, materials and while the fashion industry may think all women should have matching sets, I’d much rather be comfortable!

If you look at kids’ pants (boys and girls), they are fun! You can get pants with all kinds of prints and patterns – superheroes, dinosaurs, flowers, camo….the list goes on. They are also in all kinds of cool colours. There are some companies that make fun pants for adults (OddBalls for men, women & children and Locket Loves for women are two that I’ve used). Just imagine fun pants for adults, where you can pick the pants for the day you’ve got. Meeting with the boss today, so I’m wearing my dragon pants. Chilled day out with friends? Think it’s time for flamingo boxers. Interview? Must be time for those Steam Punk skull pants at the back of the drawer. I have a collection of empowering pants, and I do pick my pants for the day ahead!! See, it makes perfect sense. However, if matching sets are your thing and patterned pants fill you with horror, that’s fine, keep being you!

The importance and point of this rambling (and there is a point) is that sensory needs around clothing don’t suddenly stop when we get to 16 or 18 or 25 or 50, but as we, and the young people we are looking after, become teenagers and then adults, we we start to juggling societal expectations and what shops offer us as well as our sensory needs. There are work dress codes as well, which can be tricky. I have always worn quite tight jeans and now I understand about my ADHD needs, I understand why I favour my jeans – leggings aren’t the right material, they don’t give that sensory squish. I do wear baggy trousers in the summer when it’s just too hot for jeans, but I’d rather be wearing denim shorts. I adapt my clothes for work, and for different situations, but jeans, baggy T and bare feet is my favoured outfit and how you find me at home, weather permitting. I’ve tried to be a dress person, and I have a few lovely dresses that I wear on nights out, but as soon as I’m home, the dress is off, and the jeans are back on.

I don’t wear much makeup. Mascara is an every day essential, but that’s it. Pre children, in the mid-1990s I went for an interview at Mothercare, and was told I would need to wear make up for the role as the lights were very bright and would make me look washed out. I got called for a second interview, so I put ‘night out’ make up on, and was told in the second interview that I would have to wear more make up. If this happened in 2025, I would challenge them, ask them if men wore makeup too, and would shout and scream. Late teens/early 20s me just withdrew my application and walked away from the job. Why did how much make up I wore impact how I sold prams to expectant mums and dads? I’ve also worked with people who were told they wore a bit too much makeup for shop work or teaching. Again, how does the amount of eye liner someone wears, if a man wears makeup, or if anyone wears false eyelashes, has piercings or tattoos impact their ability to do their job?

If you’ve stayed with me to the end of this week’s rambling, well done, and my take home message is wear the pants (& bra) that makes you feel comfortable and ready to face the day. Put as much or as little make up on as you want, wear the skinny jeans, or dress, or combats and show the world how amazing you are as you! I’m now off to find those dinosaur pants…….

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.