writing

The HD Sunflower

| skwarepegrowndhole

I can remember when I first heard about the hidden disabilities Sunflower (if you don’t know about it, find out more here) – we were on holiday in Cornwall, and I read that you could get the lanyards from Morrisons and Sainsburys, so off we went to Newquay to claim our free lanyard. And then it sat in the glove box in my car for months, possibly longer. I changed cars, so the lanyard came into the house, and I told both of our children where it was in case they every needed it.

To be honest I was a little sceptical, and worried on several points. First of all, by wearing a sunflowers, was it almost marking people? Would it lead to them being bullied? Does everyone know about the sunflower and what it means? And would it make any real difference?

On the first point, I was wrong. There is no law saying wearing a sunflower is compulsory, you can take it off until you need it, and the main point of the scheme is that it is for hidden disabilities, so how can people help you if they don’t know you need help? And as you don’t have to wear it, you are unlikely to get bullied. With all the news coming from the US about ‘curing’ autism, though, I am still a little bit worried about what the future may hold, but that doesn’t impact the sunflower scheme.

Secondly, I don’t think everyone does know what the sunflower stands for, but awareness is increasing. And finally, would it make any real difference? YES!

Our eldest son used our one and only lanyard when we went on holiday 18 months ago, and said it made the airport so much easier to navigate, so he kept it and has used it a few times since.

The lightbulb moment for me came 2 weeks ago when we went to Twickenham to watch the Women’s Rugby World Cup final matches. We arrived at Twickenham train station, and it was so much busier than I had expected (there will be another blog to follow about how fantastic the day was and how amazing and emotional it felt to see women’s sport celebrated by so many), and we moved with the crowd down roads that were closed to traffic, and enjoyed the happy atmosphere. As we got closer to the stadium, there was a bit of a bottle neck, with people having to move to the pavements as the road was barriered off. As the crowd got bigger, we all felt uneasy. We noticed that the police and security were letting people in wheelchairs or crutches through, and then we saw someone with a sunflower lanyard going through. My daughter in law had brought the lanyard, but neither of my sons would wear it. As there are 4 out of our party of 5 with hidden disabilities, it seemed ridiculous that they wouldn’t wear it, so I took it, wore it and we all got through the barrier and avoided the slow moving crowd. It was the same going back to the station after the match. We avoided some of the crowds by wearing the lanyard.

In our family of 5 who went to Twickenham, between us there are 3 autistic people, 3 with ADHD, 4 with anxiety, one with OCD and none of these are visible to people watching us. The crowd, going through security, waiting for the train and more are all potential triggers. We all got to enjoy an amazing day out with minimal stress and an avoidance of stress points.

Last week I ordered more lanyards, wrist bands, bracelets and pin badges. If you look on the website, they have a list of hidden or non-visible disabilities (link here), and the list is growing as they want to be as inclusive as possible. I went to London for a meeting on Thursday, and I wore the bracelet. As it happens, there were no triggers, it was a stress free visit, and I didn’t ‘need’ it, but it was a comfort to know it was there, and it actually made a good fidget toy in the meeting.

If you choose to wear the sunflower, you don’t have to wear it all the time, but you can if you want to. You can choose to wear whatever feels most comfortable to you – the ribbon bracelet is the one for me – but you don’t have to wear them if you don’t want to, and I think that’s the joy of the scheme. It’s optional, you can use it as much or a little as you want, but it really can make a difference.

When the nest isn’t empty…..

| skwarepegrowndhole

At this time of year, social media seems to be full of teens going off to university and parents & carers dropping off and then going back to an empty house. As I drove to work this morning, I was moved by a dad’s words about his daughter going to a university 3 hours away next weekend. It’s a very emotional time for them, and for us.

However, it can also be very emotional when your teen’s friends are all going off to university and they aren’t, for whatever reason. It can be very emotional when your friends are all talking about how they are going to fill their evenings now their teens are at uni, and yours is in their bedroom not knowing what they are going to do next. We’ve been there, and it’s tough. We’ve watched friends miss their children as they leave for uni, and then move on to a new era of their lives, while ours seems to carry on as before, but now we have a lost teen who isn’t sure what’s next. If any of you are in this position, you will find a way, and so will they.

Our eldest didn’t go to uni at 18, and took 2 years out. He tried at 20, but it wasn’t for him, and then he went to uni in lockdown and thrived, and now he’s a teacher. I didn’t go to uni til I was 26, and that was the best thing for me at the right time. Had I gone at 18, I wouldn’t have done a course I loved, and I wouldn’t be where I am now.

University isn’t for everyone, either. There are apprenticeships, jobs, training, travel – and there is time to pause and make the right decision.

Not all who go to university live in. Our youngest went to a local uni, and was planning to live in halls and come home regularly, but it quickly became apparent that living away from home wasn’t for him. He commutes from home, he’s saved money and he’s happy – and that’s what matters.

We all develop and grow at different rates. We all have our own path to walk, and we need to let our teens do what’s right for them. It can be hard if we have an empty teen’s room and a quiet house, but it can also be hard if their friends have all moved away and they’re still there. We can feel sad when we have an empty nest, but it can be sad if we feel our young person has been left behind – but they will find their way, and they will be ok, we just need to give them time and listen and sit with them when they want us to.

Results day(s)

| skwarepegrowndhole

In England, Wales and Northern Ireland, many 15-18 year olds will be on edge. The last 11+ years have all led to the moment when they open the email or go to school or log onto a portal. In that moment when they look at their results, they will know if they have been a success or a failure in education……..

Except, in the real work, that’s not how it works and that’s not how it ends. Headlines in the press and on social media about A-level and then GCSE results being up or down, about a north/south/east/west divide and how girls or boys have been better or worse this year are there to make us believe that this is it. Whatever those results, they will follow us and haunt us for the rest of our lives – but they won’t.

Education is becoming more and more monetised. A Government document released earlier in July this year is titled ‘Key Stage 2 attainment and lifetime earnings’ (link here) and in it, the levels in KS2 SATs are linked to what that 11 year old may earn in their lifetime. What a load of rubbish, and how awful to have a report that looks at SATs results and how much tax these CHILDREN may pay in their lifetimes. Nothing about happiness, health, mental well being or anything important, just their potential lifetime earnings. There will be similar research out there for GCSE/level 2 results and A-level/level 3 results, and these obviously will include Scottish Nationals and Highers.

Young people’s exam results matter – I am not saying they don’t. What happens over the next year or two will be directly influenced by their results. University, apprenticeships, work, college places may all depend on the numbers of A, B Cs and 9-4s, but life does go on if the required grades don’t appear on the results slip.

What we need to do as we approach results days (and apologies to any readers in Scotland, this is a week too late, I will do better next year) is be there for our young people. I’ll write a more detailed post about what to do if the grades for uni haven’t been met and publish this on Wednesday, but as a general rule, be there for them. Let them feel whatever feelings they are experiencing. Do not berate them or tell them off – what’s done is done. You can’t rewind time, you can’t change the outcome, you can’t shout at the teachers. What you can do, is offer them unconditional love and support, and then, when they’re ready, help them to decide what comes next, be that resits, a different uni course, alternative employment or a year out.

Sometimes getting unexpected results is a good thing. Results that are better than expected can open more doors, and results that are less than expected can open new doors, and both of these can lead to more opportunities. I have personal experience of this (my A-level grades were not what was expected) and also as a parent, and I know it can be tough.

Whatever the results, and whatever way your young people have experienced education (Academy, LEA state school, private school, special school, AP, college, home school, unschool, online school or something else), they’ve done it. At 16 they are through primary and secondary, and they have the freedom to choose school, college, employment or apprenticeships, and at 18 they are done with formal education. Whatever their results day brings, they’ve done it their way, and you should be incredibly proud.

Burn Out

| skwarepegrowndhole

21st century life in the Western World seems to be focused on productivity and results. Via our phones we have access to the internet, social media and emails (work and personal) 24 hours a day. Even though it’s not expected of me at all, I know I check work emails in the evening and at weekends. I also struggle to do nothing, and feel that I have wasted a day if I haven’t ‘done’ anything. I’ve put done in quotation marks as a day resting is still doing something, but my 21st century ADHD brain does not see that as doing something meaningful.

It’s been a busy term at work, and it’s been a busy term at home. The summer term always feels very long, and alongside this there are exam & coursework deadlines, tired learners, tired staff, and we have had the knowledge that Ofsted could visit at any time. I was torn between wanting it this term to get it out of the way, even though we were all tired, as it would be before the new inspection standards arrive in September, and hoping it would be at the end of September when everything was new and fresh.

At home, I have been busy studying. My self-imposed deadline to get all of my doctoral research done and in was the end of the term – and I did it. Huge thanks to any colleagues who are reading this who took part in a focus group discussion during a particularly tiring week, and the lovely young people who agreed to tell me their stories. I am so pleased it’s all in – just analysing and writing for the next 18 months now – and that I hit my deadline.

However, all of this meant that when we finally broke up on Tuesday, I was done. I was burnt out. I was so tired and emotional, and I felt ill. I even did a Covid test as I felt as washed out as I had when I had it. Wednesday I listened to my body – still did an Ikea and Costco trip with my grown up children, and had a uni meeting in the evening, but in between I rested. I resisted the urge to pick up a book and read, and to do some crafting. Instead I flopped on the sofa and watched old episodes of ER. Thursday things got a bit messy again, but I ignored my body and didn’t rest, so Friday was a day of relaxed coffees and reading, and then family time in the evening.

It has taken me over 50 years to learn when I was in burn out. Before I used to get cross with myself for not being able to be my best all the time, for getting over emotional or for wasting a day resting. I hope I have taught my children to do it better, to listen to their bodies, to rest when they need to. We don’t have to do everything every day. A day of rest is a day of doing. Turning off our emails and social media is fine – we can catch up later on or tomorrow. We won’t be able to be our best if we are running on empty, or we are out of spoons.

I have learnt self acceptance this week. I am not invincible, I will, and do, burn out when it gets too much. I am learning to rest when I need to. I hope you will too.

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.