SEN

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.

School report

| skwarepegrowndhole

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?

| skwarepegrowndhole

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.

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.

post 18 support

| skwarepegrowndhole

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!

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.