Hope

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.

When Anxiety Comes Knocking

| skwarepegrowndhole

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.

where i am right now

| skwarepegrowndhole

It occurred to me over the weekend, that sometimes the pieces all suddenly begin to come together, and everything that you’ve been through – all the battles, the highs, the lows, the sleepless nights, the reading, the advocating, the tears and everything else – has led you all to where you are right now.

I have taught for the last 21 years – in fact it must be 21 years this month since I started teaching for just one morning a week alongside the last term of my undergrad degree. When I started, I had the vocational experience needed to teach at FE level, but I had no teaching skills. In all honesty, in that first term, I winged it. I tried to embody all of the good teachers I had ever had and none of the bad, and I think it worked! I loved it from my first lesson – and from that first lesson I have always tried to get my students, whatever age they may be, to like learning.

My first head of department was the most inspirational manager I have ever have (& if you’re reading this Mike, I mean that completely). He told us that it was an honour and a privilege to be able to teach teenagers. They let us into their lives, and is was up to us to live up to this and do the best we could. He believed, and still believes, that if you have the opportunity to teach teens, you should never be dull or uninspiring. If that’s you, then you’re in the wrong profession. He was right.

I knew very little about SEND when I started teaching. I knew that our eldest (at that time our only) was a bit of a handful and there was something. I didn’t know the terms neurotypical and neurodiverse then either, but if I had, I would have known that our boy was ND. My journey as a SEND parent was hand in hand with my journey to today, where I seem to specialise in ND or SEND students. Both my teacher and my parent hat complimented each other, and both helped me when wearing the other – if that makes sense.

From teaching the wide range of students that you get in vocational courses, I could identify things that maybe weren’t quite expected in my own children, and my journey with my own children has definitely helped me to become a better teacher. I have also seen parents and children let down by the system, I have seen people accept the first thing they were told when actually that was wrong, I have seen teens see their diagnosis as something bad, or something to fight against. I have cried on the way home from work because I can’t change the world for my students, and I have cried at home because I can’t change the world for my own children.

Today, I still advocate for my children, even though they are now young adults. I still see teaching teens as an incredible honour and privilege. I can’t change the world for my children or for my students, but I can give them everything I can to make the world a little bit easier. I can inspire them to learn, to believe in themselves, and to sparkle and shine.

Today I feel incredibly lucky to have my boys – they are two amazing individuals who make my world a better place. Today I feel lucky that I have a job I love, and teens who inspire me as much as I hope I inspire them.

You don’t have to be this tired…..

| skwarepegrowndhole

When we were going through one of our many stints at CAMHS, I had a conversation with our then case worker. I told him that I was just so tired, and that parenting additional needs was just so hard, and he replied that it is hard, and it is tiring and nothing can really change that, and that was the end of that conversation.  I get where he was coming from, as parenting generally is hard and tiring some of the time.  When you factor into that a child with additional needs, or a child who is going through a tough time, or a child (or parent) who is unwell, ‘some of the time’ becomes ‘a lot of the time’.

However, we have finally got to a point where both our children are doing OK.  We are still riding the roller-coaster, dancing in the rain or making lemonade at times, but, and not a moment too soon, things are a little better. 

I keep asking why, what has made us get to this point? And I think it is because they have both reached a point where their additional needs are an integral part of who they are, and they have the coping mechanisms in place, and the support they need to allow the good side of their barriers, conditions or whatever you want to call them, to come to the fore.  Yes, we have days (& weeks) where they still need help fighting their battles, but they also have days & weeks where their amazing uniqueness shines.

Reflecting on all of this has made me realise that I’d like to go back to the case worker and tell him that he was wrong. That it doesn’t always have to be tiring and exhausting and hard.  One of the reasons why we pushed for a diagnosis for a condition that we knew was there was because we needed people to make reasonable adjustments so that we could get to this point.  One of the reasons why I have worked part time (often juggling multiple jobs working from home and going out to work to get an almost full time wage) is so that I can fight battles and help put coping mechanisms in place.  One of the reasons why I decided to write a book is to help others get to this point sooner that we have!

Don’t get me wrong – over the last week I have had conversations with an anxious teen at almost midnight, offering to sleep on the sofa in the lounge and I have slept on the teen’s floor, and last week I was answering texts relating to OCD style actions and consequence worries from our older one, but it’s not all hard work, and there is lots more laughter.  I can pick the battles I will get involved with, and let them fight some on their own.  They are becoming people who are not limited by their conditions, but also are not afraid to ask for help or changes if that’s what needs to happen.

Let me run that two key points past you again – they are becoming people who are not limited by their conditions, and more and more we are seeing them and their amazing uniqueness shining.  We have waiting a long time for this – as have they – and it isn’t as tiring any more.  If you are going through battles, hard times, bad weeks/months/years, and you’re exhausted, please hold onto this: it can, and it should, get better.