ASD

Where to start….

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It’s been 2 months since I last blogged – and there are several reasons for this, but the main one was that I didn’t know where to start. The expected SEND white paper was delayed, the UK government want to introduce more testing, the US government claimed that Tylenol/paracetamol taken in pregnancy could cause autism, the IFS green budget had some very ‘interesting’ opinions on how to solve the SEND crisis, some Reform party members & councillors were criticising the SEND budget (but a local council has also spent £75,000 on union flags to be hung around the county), and then, more recently, there were bits in the autumn budget that makes me very worried about SEND funding, and finally, Wes Streeting, the Health Secretary has started a review into ADHD and ASD because they might be overdiagnosed, which then lead to a BBC GP survey where, apparently, many of them have said that ‘life being stressful is not an illness’ (link here) and that mental health conditions are being over diagnosed. Just when I thought, right, I’ve enough to blog about, something else pops up on my news feed and I then spend several days ranting at anyone who’ll listen, and I don’t actually start blogging.

This is obviously more than one blog, so today I’ll start with ASD, ADHD, diagnosis and causes. I wrote about the genetic roots of ASD & ADHD (link here if you want to read it). While there are some arguments that early life trauma can cause or trigger neurodivergent conditions, this could be an epigenetic trigger, where there is the genetic coding for a condition, but it can also be that trauma almost ‘switches on’ the genes and then the condition is more noticeable. However, sometimes trauma does not switch on genes, but instead, the impact on the body is so great that the external characteristics appear like ASD, ADHD, or PDA, but are a reaction to the trauma. In addition, some conditions, such as MS, can impact cognition in a similar way to dyslexia, but that doesn’t mean that MS causes or triggers dyslexia.

We are not in the middle of a neurodivergent epidemic. I didn’t suddenly catch ADHD in the last few years – the signs have been there since I was tiny, but ADHD was barely recognised in the 1980’s, and even less so in girls, so I was missed. I was also academic, got things done (often at the last minute). Nobody seemed that surprised when my GCSE and then A-level results weren’t near my predicted grades as I was always daydreaming, but if I were a child now, plucking feather duvets, not getting school work done on time, not concentrating in class, being messy, always forgetting where I put things, having a large gap between my reading and spoken language and my written language, the school, or my parents, may have flagged this. I may have had an assessment much, much younger.

There is a lovely meme on social media at the moment that I have borrowed from Dr Martha Deiros Collado on Instagram (link here) and I think it sums all this up perfectly.

The only other topic I am going to cover today is the debunked link between paracetamol/Tylenol use and autism. The amount of parental guilt when you see your children struggling with life is HUGE. I have spent so many nights wondering what I did wrong. Was it that glass of wine I had before I knew I was pregnant? Was it my stressful job (I found out I was pregnant with our youngest just after an Ofsted inspection)? Was it the fact that all I could eat was salad and chips, and all I could drink was red-bush tea and lemonade? Was it because I worked as an assistant vet nurse, and although I was really careful not to go near anything that may cause any harm to my growing baby, I maybe should have found a different job?

No, no, no, no. Absolutely not. I did not do anything to cause my children’s neurodivergent conditions. Although as parents we have made some decisions that, looking back, could have been better, we did a pretty decent job – and still are. I took paracetamol during pregnancy when I wasn’t well because it was the safest painkiller. I have friends who were on different medications that they needed to take for their own health, and they did nothing wrong either. There have been numerous peer-reviewed studies and meta-analyses that have shown NO link between paracetamol and autism. Paracetamol does not cause autism. We are not in the middle of an epidemic; we are just finally seeing the stars.

Holidays

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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

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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.

Results day(s)

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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.

It’s not just Ofsted

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Some of you may have seen Chris Packham’s rightfully angry video about an Ofsted training manual that states that autistic children are more likely to be radicalised than their non-autistic peers. If you haven’t seen the video, have a look here.

I’ve dug a little deeper trying to find the training manual, and the closest I could find with a quick look this morning was a Huffpost quote about it (link to the article is here). A quote in the article is that the training manual reportedly says:

“Children and young people with autism are at increased risk of being susceptible to extremism. This is because they are more likely to develop special interests.

“Due to this and any social communication needs, children with autism are more likely to experience social isolation and so use the internet as a way to find friends. They trust the information they read and the ‘friends’ that they find online and so can be drawn into extremism.”

I am with Chris Packham on this. It’s an inflammatory and ableist statement that doesn’t begin to look at why this may happen, and why swathes of young people (not just autistic children) are also at risk.

Autistic children are an easy target here. The general perception of autistic people is that they’re socially awkward, gullible, they don’t have friends and they don’t have a big social group. This maybe true for some autistic people, but definitely not all of them. It’s also true for many non-autistic children. To single out one neurodivergent group is wrong.

Children are struggling in the 21st century, and even more post covid. The waiting list for support can be years long. Those with mental health issues may not be seen until they get to crisis point, and even then, at crisis point, there are often waiting lists. This is not because the NHS is bad, it’s because mental health support for all ages is woefully underfunded. CAMHS (Children and adolescent mental health services) are overwhelmed. Local governments cannot afford SEND support, and families are waiting far too long for EHCPs.

Even children without mental health issues can feel lonely and isolated, and seek a community or understanding group online.

If we look at the rhetoric in the media (print, online and social) there is so much negativity, and sectors of society are portrayed as not contributing. Added to that the pressure to look or behave a certain way, to get high grades, to achieve, to have friends, to have a social life, to get a partner, to be straight, thin, pretty, handsome…..the list goes on and on.

Imagine being 13. You’ve just moved to a new area. You are tall (or small) for your age. You’re not great at sports, you can’t afford the latest phone, and you feel that you’ll never fit in. Your parent(s) work long hours to pay the rent, so after school you’re on your own. You haven’t made new friends, you feel lonely and so you turn on your phone and start scrolling. You find a page on social media that seems to be talking to people like you. You join the group and start conversations, and you feel that people are really listening to you. You don’t feel lonely any more, and you feel that you have new friends who understand you.

You don’t have to be autistic to feel like this. It can be any teenager (or adult) who either doesn’t meet societal expectations, or just feels a little different.

Social media wasn’t a thing when I was a teen, but if it had been, there were times when I could have looked for an online tribe.

Chris Packham is right to be angry, and Ofsted should not have singled out one group of society. However, society is pushing children and young adults towards online communities. Schools are not inclusive. Many people feel disenfranchised and left out. We are a tribal species. We have evolved to be part of groups, to have a feeling of belonging. If it isn’t found in person, there’s a huge online world to find their place.

Let’s stop blaming the people who are being groomed or radicalised online and instead solve the reasons why, and give the young people the support and community they need in real life. If school and society are inclusive, and if hateful, blaming rhetoric stops, and if the media is accepting, maybe that would be the biggest step towards reducing grooming and radicalisation.

let’s talk pants

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

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

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

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

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

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

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

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

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

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

I’m back!!

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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.

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….

| skwarepegrowndhole

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!