Anxiety

The HD Sunflower

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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.

School report

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So, GCSE and A-level results have been & gone. The media (online and print) have made their comments, and not all of those comments have been positive, some of which I wrote about last week (link here).

Successive governments have promised to ‘fix the system’, which is an admirable aim, but successive governments have not done this, and I doubt the white paper on more educational reforms due next month with be full of ideas that will make much of a difference. I will write about this when it comes out, and if I am wrong, I will hold my hands up and admit it.

I strongly believe that the main reason why education isn’t getting better, and for many, including the square pegs, it is getting worse, is for two main reasons. The first is that education is now monetised. The amount of government funds it costs to educate a young person from 5 – 16/18 needs to be repaid in the amount of tax that young person will contribute to society from when they finish their education to when they retire. The second is that the educational reforms are not driven by teachers, students or people in the classroom. They are decided and driven by politicians and civil servants.

I’ll talk about monetisation first. I fully accept that there isn’t a magic money tree, and that governments can’t keep borrowing more and more money. However, I don’t think that each piece of the government purse needs to be looked at individually. Education and the NHS are intrinsically linked. There is a mental health crisis in the UK, especially among under 25s. The waiting lists for CAMHS (Children and Adolescent Mental Health Services) are colossal. In 2022/23, almost one million children were referred to CAMHS, which is 8% of the child population. Of these, over 270,000 were still on the waiting list, and over 370,000 had their referral closed before they could get support – this may be because their parents paid for private support, because they reached 18 and were no longer eligible for CAMHS and would now have to access adult services, because they moved or missed an appointment, or for other reasons. Over 40,000 young people had been waiting for more than 2 years (the source of all of this is available here).

If we improved education so that it didn’t have such a negative impact on many young people’s mental health and well being, if we had more staff trained to spot the early signs of depression, anxiety, OCD, eating disorders etc, and if schools were more ND/Square peg friendly, this would reduce the amount of young people struggling and seeking help from CAMHS. The amount of children home schooled (EHE – elected home educated) or EOTAS (educated other than at school) is also increasing, another sign that the current education system does not meet the needs of all our young people.

We don’t need education reform, we need a complete overhaul of the system. Despite increased testing throughout school (I’ll come onto this in a moment), over 40% of those taking English and maths exams this summer did not get a grade 4 or above (grade 4 is the equivalent of a C grade with the old marking scheme & O-levels). Either the testing is wrong, or the education system is not geared up for 40% of young people taking exams. Now, not everyone is capable of passing 3 maths papers and 2 English papers. Not everyone will get to the grade 4 standard, however we assess them. But something needs to change so that more people are not held back by being part of that 40%. Maths and English passes are needed for so many future opportunities, from achieving a level 3 or higher apprenticeship, to some vocational qualifications (vet nursing and farriery are two), for teacher training, for university and more. I have taught some amazing people who worked in residential children’s homes or care homes. They were fantastic at their jobs, and they were respected within their teams, but because GCSE or Functional Skills exams were difficult for them, they could not achieve their level 3 qualification.

Repeated testing from KS1 (age 5-7) all the way through school to GCSEs and level 3 qualifications will not improve how young people learn. As a biologist, I know that there is no such thing as an average human, and even more so when we look at young people. We do have average milestones, and if a baby or toddler is very late reaching one or more, that can be a cause for concern, but all people learn and develop at different rates. Both of my children, for example, were out of nappies months before their second birthday, but didn’t sleep through the night til they were 3 or more. A friend’s son slept through from about 6 months, but was in nappies til he was almost 3. My children are no better or worse than hers, they just developed differently. Testing little children for how they hold a pencil, how long they can sit still, if they can spell their name, if they can read 10 high frequency words and then keeping these results is, in my opinion, worth very little. Teachers, TAs and nursery nurses do need to keep track and make sure that children are learning, but this can, and should, be learning through play, conversations, games and stories rather than teaching them to hit milestones.

As we move up into KS2, the end goal is SATs that are taken at the end of year 6, just before secondary school. These assess English, maths and science, not how well an 11 year old can hold a conversation, or how well they understand the world around them, or how amazing they are with their hobby. More assessments through KS3, and then formal assessments at 16. More and more testing and teaching to benchmarks obviously isn’t working for over 40% of young people as they are not hitting the benchmarks at 16.

What’s the answer then? Well, I think the first step in education is to start with developing a love of learning, and learning for pleasure and to find out interesting things, rather than being taught how to regurgitate information in a test. We then need to make lessons fun – for the teachers as well as the students – so that inquiry and desire for more information grows. At that point, there is a purpose to writing and reading, and numbers start to matter (how tall was a T-rex, how many goals did Harry Kane score last season, for example). Once there is a purpose to the fundamentals, there will be a motivation to develop them and master them.

If I was to grade the education system in the UK, I would give it a 3 (or a low D). There are some good parts, there are some outstanding classroom staff, but, as a whole, it isn’t hitting benchmarks and must do better.

what difference does a label make?

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I promise this blog won’t end up being just about me and ADHD, but this is another ADHD post!

It’s just over 3 months since I had the official ‘yes, you have ADHD’ conversation, and I can honestly say that is has had a huge, positive impact on my mental health. I obviously haven’t only had ADHD for 3 months, I have had ADHD for the past 53 years so the diagnosis and label didn’t change that at all. The diagnosis didn’t make it appear, it didn’t make it more or make it ‘worse’, but the diagnosis did change how I feel about me, and how I deal with how I feel.

For 53 years, I felt that I wasn’t enough, but I was also too much. I replayed conversations in my head over and over again. I had to stop myself butting in to conversations and finishing other people’s sentences. I felt I had nothing to say, but also had everything to say. People walking too slowly would make me stim, and if someone took to long to explain something obvious, I know my facial expression would show my boredom – this isn’t to be confused with conversations that start with one story and quickly deviate off to all kinds of unexpected places. These are my favourite conversations.

I still replay conversations, I still get fed up with people walking slowly, I will want to butt into conversations and feel all the feelings, but now I know it’s not because I’m broken, or because there’s something wrong with me. I have a brain that is whizzing at 100 miles an hour, focusing on everything and picking up on things that others may not. It’s not a superpower, but it’s me, and I am not broken.

Over the years, I have had multiple conversations with people who don’t want a label or a diagnosis, and I’ve written before that a diagnosis is a lens rather than a label; it allows other people to see and to understand, but I now understand how it also allows us to understand ourselves.

I remember when our eldest had his ADHD diagnosis, and he said it was a relief to know that he wasn’t going crazy, and that it was something that had a name. As well as allowing us to understand him a little more, it allowed him to understand himself. As he’s grown older, but before he left some, he sometimes told me that he may be having an ADHD week, so could I break things down into smaller chunks or instructions, and give specific times that things needed to be done. It could be ‘washing in the washing machine by 9am on Saturday’. This was a direct instruction with a deadline. It made things a little easier for both of us.

I understand the ‘ADHD weeks’ too – some weeks things seem to be more chaotic than others, and when they are like this, I have started using lists in my phone. I have to add a couple of things that I’ve already done so I can tick them off, as this makes the list less daunting, and also gives me a bit of a dopamine hit. I am also more honest about what’s going on with my thought process. In the past, if things didn’t go the way I expected, or if I was upset by something, I would clam up, but then be off with people close to me. Now I explain why I am feeling how I’m feeling, however obscure these feelings may seem when I say them out loud. It’s helping others to understand me, and stops me being stroppy or grumpy over something that can be resolved or understood.

Some have asked me if it was worth going to see my GP and then waiting 15 months for a diagnosis when I am in my 50s. Yes, absolutely yes. I had imposter syndrome about self diagnosis – was I just making excuses, and was I almost belittling the things that people who ‘really’ have ADHD go through? It has been liberating – and also explains why we missed so many signs and behaviours that our children had when they were younger. Your son putting a staple through his finger at 7, just to see if it would go through, doesn’t seem that odd when you did the same thing at the same age.

That saying, many are happy with self diagnosis, and that’s fine. I’m not saying everyone who thinks or knows they have ADHD or are autistic should go and get a diagnosis. It’s about doing what’s right for you.

For me finding out that I definitely have ADHD has been a game changer. I’m not on any medication, it hasn’t changed me that much, but it has allowed me to be kinder on myself, to explain how I’m feeling, and to rest when I am close to burn out.

Do I wish I had found out sooner? I’m not sure. I wish I could go back and hug my younger self and tell me everything would be ok, but I love where I am now, and finding out may have altered my course and led me somewhere else.

I feel I found out at the right time. I have ADHD, my brain is different not less, and I like it.

I’m back!!

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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

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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.

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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.

When Anxiety Comes Knocking

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Nobody chooses to have anxiety. I’m not talking about that anxious feeling you might get before flying or before an exam. Instead, I mean general anxiety, where you overthink most things and live in a state of heightened angst and awareness most of the time.

Our youngest is back at uni tomorrow. He has mixed feelings. He’s looking forward to a more ‘him’ mix of modules this semester, but he’s also very anxious because it’s a new timetable, new lectures, possible new lecturers and, unlike many of his peers, he’s at uni 5 days a week.

Because uni has been harder than any of us anticipated, he has taken steps to keep his anxiety under control, and as I wrote last week, he has been to see the GP, mental health nurse and then therapist, and CBT will continue this coming week.

What we all need to remember, is that anxiety is not a choice. Like depression and other mental health issues, anxiety is not something you can change with a positive mental attitude or by simply stopping worrying. And anxiety can cause ripples that make other things less bearable.

If I am anxious, I get more jumpy, more stressed and my eating patterns change (either increasing or decreasing). I also get palpitations, and I sometimes get IBS symptoms. Anxiety causes an increase in cortisol, and our bodies go into fight, flight or freeze mode. Anxiety is a throw back to our hunter gatherer ancestors. Going into survival mode when predator was close, or when you travelled to a new area where there may be unknown dangers meant you were more likely to survive. Going into survival mode because there is a stressor you cannot control in the 21st Century means that our busy modern lives may be impacted.

There are lots of things we can do when we feel anxious. Being outside, going for walks, and being near animals may help, as can yoga, controlled breathing, mindfulness, grounding and similar activities. I find playing loud music and screaming (or swearing) really loud whilst driving in the middle of nowhere very cathartic and it definitely helps to relieve short term anxiety and stress, but it’s not something my vocal chords could manage on a daily basis!

So, what do we do when anxiety comes calling? If possible, we remove the stressor(s), but this is not always possible. We use different techniques and activities, we talk to health care professionals, we take medication (if appropriate or advised) and we take each day at a time. We also need to be honest and talk to people we trust about what’s going on. As I wrote last week, mental health is health, and we need to talk more about how we are feeling. I write in my book (available here) about how we need a tribe, a circle of friends – or even just one or two people – who we can turn to and who will listen.

As the saying goes, a problem shared is a problem halved. Talking to someone you trust really can make a huge difference. If there isn’t anyone you can talk to, then you can contact your GP, you can self refer to talking therapy services through the NHS, and you can talk to the Samaritans, the NHS Crisis line, and other organisations. The list below is listed directly from the MIND website – link here – but remember anxiety can affect any of us, and you don’t need to be alone.

Urgent mental health helpline

England

If you live in England, you can call a local NHS urgent mental health helpline for support during a mental health crisis. Anyone can call these helplines, at any time.

These helplines offer similar support to a crisis team. The NHS website has more information on urgent mental health helplines, including how to find your local helpline.

Wales

In Wales, you can contact NHS 111 and select option 2. This will put you through to an NHS helpline offering 24/7 urgent mental health support. Visit the NHS 111 Wales website to find out more about this service.

post 18 support

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This is a positive post – but I am aware that not everyone will have had our experience of post 18 support.

First of all, I need to clarify that our youngest has not had an EHCP. I did query this when he got his ASD diagnosis, but we decided not to pursue this for various reasons, although I was a little worried that our decision may become something we regret later.

I was warned when our youngest was in Year 13 and we were pushing for more support in exams that it would be harder for him to get support at university, and that he already had a lot of exam support. The amount of support, to be honest, is irrelevant. Our youngest is very clever and academically able, so the support is there to allow him to fulfil his potential.

The ‘extra’ that we were asking for was a room on his own. During GCSEs and centre assessed grades (CAG), he was in a room with other year 11s who had learning support. He was distracted by them writing, typing, sighing, having rest breaks, finishing before him, scribbling on the paper and tapping on the desk, to name a few. I had to email the then SENCo to ask for the distractions to be taken into account when the papers were marked. I have no idea if this happened, but A-levels were marked by the exam boards, and no dispensation was offered last year. They were back to pre-covid examinations, standards and marking.

When I found out that another learner had been offered a room on their own for their A-levels, I got a little stroppy. I emailed the SENCo several times, to no avail, and then ended up emailing the form tutor, who was the one who told me about universities. To be frank, university access arrangements meant nothing if we didn’t get the right support for these exams because if he didn’t get the grades, he wouldn’t be going anyway.

More emails were sent, now to the deputy head, and finally a reply from the SENCo, a phone call, and then the room on his own for most exams was agreed. Not quite what I had asked for. Fast forward to the penultimate exam, and the room on his own was disturbed by teens running past the room and disturbing him. Another phone call or two, lots of angry emails, and the final exam went ok.

Even before results day, his first choice of university got in touch and invited him to a SEND day in July. We went (parents invited too), and it was a fabulous, inclusive day. Results day came, and he got the grades he needed.

As I wrote last time (link here), we’ve been through a rollercoaster of emotions since September, but the first exam has been and gone – and it was so much smoother than school. He was told by the disability services that his reader would be in touch before the exam, and there would be time to meet up in person or online before the day if needed, but to email and just go through his needs. He didn’t want to meet up, but emailed what he wanted in the exam. He arrived in time, had the room on his own, extra time, coloured paper and a reader/prompt who did exactly as he asked.

We (and I say we as it’s him with us supporting all the way) are only at the end of the first semester, but the support has been outstanding. Lecturers have taken the time to answer questions and make adjustments where possible, getting the right exam support was so much easier than school, and the specialist ASD mentor and study skills mentor have both been amazing.

So far, post 18 support has been everything he wanted, and has been much easier to get than I was expecting – long may it continue!

What happens next….

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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!