I’ve had an imaginary conversation with someone (we’ll call them Bob) that went something like:

Bob: So, how old was your child when you went away for a weekend without them?

Me: 17

Bob: Weeks?

Me: No

Bob: Months???

Me: No

Bob: Days??????

Me: *nervous chuckle* No, 17 years.

That’s how old our youngest was last weekend when we got our weekend away in York. We last went away, just the two of us, 19 years ago for my 30th, and we went to London and saw Madame Butterfly at the Royal Albert Hall. We dropped out oldest (who was our only at the time) at school, drove down to London, had an amazing evening, and then drove back early the next day and were back by lunch. The last time we had 2 nights away was 26 years ago when I was pregnant with our eldest!

I had an overnight at a conference when our youngest was almost 2, and our eldest didn’t speak to me for a couple of days, even though I brought him back tacky tourist presents, and my husband has had to work away, sometimes (but thankfully rarely) for a week at a time, but we haven’t managed to get away, just the two of us for a very long time.

There are various reasons for this. The main was that both our children have had health issues, and sleep issues. That was the first stumbling block. They also have additional needs that made it much harder for us to get away – and by the time health issues were under control and they slept, they were used to us not going away, and the thought of us (me) not being there for a night or two caused an enormous amount of anxiety.

The anxiety was the main reason – and their anxiety fed my anxiety. To an outsider looking in, our youngest doesn’t look that anxious. He is ok at school, but could not go to sleep overs for years, and even now doesn’t like them. Where many children explode, he implodes and when things get too much, he has terrifying stress migraines and vomiting which can last for several hours, and once they start, they just have to run their course. Until he was 16, we camped in the lounge, sharing an L-shaped sofa (heads together so there was contact) at least once a week. When anxiety causes that much upheaval, there is no way we could just disappear for a weekend.

Money was sometimes an issue – a weekend away isn’t cheap, even on a budget and when the family holiday budget is small, a weekend away is just too much.

Another issue is that we didn’t ‘need’ a weekend away. We have been together for 32 years this summer, and married for 27. What we do works for us. We are a unit. We have been through some traumatic times, health scares, hospital stays, ill children, SEND, battles and more, and we are as strong and as happy as ever. We love spending time with our children, always have done, and we both really missed them this weekend.

Leading on from that, at no point this weekend were we unreachable. We messaged them when we left home, when we arrived at York, checked in after school/work, messaged goodnight……..and we also answered their messages and calls straight away. The main plus point of two days without the kids is that we could go into places that would cause sensory issues – we ate at a fish restaurant, we went into second hand book shops that were full of that second book smell, we went into a noisy bar, we went for walks that went on for AGES, we went to cafes and it was fabulous.

However, two days was enough, and it was lovely to get back home on Sunday afternoon. We did it, we went away, the kids were fine and took care of the animals. They didn’t fight or have any fall outs, and it worked. We may have waited a long time, but it we did it when the time was right for all of us, and it was stress free for all of us. Everyone is different, every couple, every family have different needs and expectations. We know what works for us, and we will keep on doing it our way!

At the moment I am trying to write the ‘Skware peg’ book – it will be much more than the ramblings on here, and at the moment I’m doing lots of research, looking at peer reviewed journal articles so I can write a mix of what’s happened to us as a family and current theoretical thinking.

Anyway, I digress. Part of my research has been to talk to the skware pegs that I know to ask them what they wish their parents, wider family, carers and teachers knew. Some of it was what I expected (treat them as individuals, don’t think you know what they’re going through, adapt what you teach so that they can learn), but interesting answers came from our children.

I have blogged (& blogged) about their highs and lows, so if you’re not familiar with what they’ve gone through, grab a cuppa and scroll through my previous posts. However, having watched them go through what they’ve gone through, what they wanted people to understand wasn’t quite what I had expected them to say.

Our eldest wished people were more patient, and would see beyond their perception of his behaviour – at work, in education and at home (gulp!). He explained that people interpret his behaviour (or lack of action) as a negative thing, where actually it’s not that he hasn’t done something, just that he hasn’t done it yet. An example of this would be my nagging him to tidy his room. I am messy, but his messy on a good day is like my messy on a bad day, cue my nagging to tidy, him saying he will and then me getting cross a few days later when it hasn’t been done.

His point is that he hadn’t ignored my request, he just hadn’t got round to it because he had been focused on something else. At school he was told off for not finishing a task or not doing as he had been told. For him this was a similar situation. Either the task was too big for him to know where to start, or he just hadn’t got round to finishing it. At home, at school & there have been examples from work, he was told off for not doing what had been asked. From his point of view, either there hadn’t been a clear timescale given, or he had been distracted by hyperfocus in another area. I am trying to be better at giving requests now, and will give clear, specific instructions. I may say ‘by 5pm I need a bag of rubbish and a small bag of recycling out of your room’ which is much easier for him to follow than a vague ‘tidy your room’.

Our youngest wants people to stop underestimating him or thinking he’s naïve. He might be quiet for much of the time, he might not go out very much, but he is very aware of the world around him. He is incredibly savvy when it comes to local, national and international politics. He has very strong views (fully researched) and likes to debate and discuss all manner of topics. However, some people, peers as well as some teachers, don’t see this, and he would like people to look beyond the mask, and see the intellectual individual he is.

I can relate to these things. I have had friends stop inviting me out because I either couldn’t go or on that occasion not want to go. I don’t find making small talk particularly easy, but I’m not shy. I don’t drink much alcohol, but that doesn’t mean I don’t like to have fun.

We all look at people and make judgements, even if we don’t like to admit it. We probably all think that we know people and how they think and feel. We probably don’t. We need to empathise, look beneath the mask, make requests clear, and we need to stop underestimating people.

A few weeks ago, I wrote about Strictly Come Dancing (link here) and how incredible this series has been. This post talks about the 2021 winner so if you haven’t watched it yet, don’t read this post!

I’ve just watched the final, and I have been close to tears all the way through. Because of injury, it was just Rose Ayling-Ellis and John Whaite in the final. Rose is a deaf actress, and an amazing dancer. She said in the final show that she doesn’t have any extra time than the other dancers, so her partner, Giovanni Pernice, and the other choreographers have to teach her in a way that she can learn – and she has to work incredibly hard. She won because she was an amazing dancer. She dances with such amazing joy and grace, and incredible timing. The partnership she has with Giovanni is something else – there is a unique connection and it is breath taking to watch. She didn’t win because she was given easy dances or simple routines. She won because she is an incredibly talented actress and dancer.

The other couple were the first all male partnership on Strictly. John Whaite and Johannes Radebe didn’t assume the lead and follower roles in their dances; they re-wrote the way the dances could be danced. They swapped leads, they both lifted and were lifted. They didn’t get to the final through pity or easy dances. Like Rose, they produced amazing dances that had been choreographed for them.

My life revolves around Skware Pegs, hidden disabilities and advocation, both at home and at work. I want my learners to do well because I adapt the way I teach so that they can succeed. I don’t expect them to do well ‘despite’ their disabilities/worries/barriers. I try my best to adapt my teaching so that they can get on with learning. I try my best to never use a ‘one size fits all’ approach. I try my best to ensure that every learner I have has the best teaching I can offer that is right for them.

I think part of the reason why I found this evening so emotional is that Strictly has done this for Rose. Yes, she has had to work harder than I can imagine, but the team put every adaptation that was needed to make the playing field as level as possible.

John Whaite has been very open about the struggles he had when he was younger, the issues he had when he came out, and mental health issues that he has had as an adult. Seeing an all male partnership has broken down barriers, and will have given people hope. In a time when suicide is the biggest killer in men under 50, it has also shown men expressing feelings and vulnerability.

I have loved this series, but the two couples in the final have moved me so much. They have shown positivity, joy, hope and the magic that can happen when everything that needs to be done has been done. I am inspired.

Another Christmas holiday looms, another Covid variant and more scary headlines seem to be surrounding us at the moment. The education minister was interviewed at the weekend and he couldn’t rule out school closures in the new year. This week, the last week of term, secondary schools have gone back to mask wearing in classrooms and Ofsted have stopped in person inspections.

Whatever you think of lockdowns, vaccines and Covid in general, no one can deny the impact it’s had on our children, regardless of whether they are skware pegs or not. Covid is in our schools, and I have friends who have caught Covid from their children, who in turn caught it at school. Ideally, windows would be open with improved ventilation, but it’s winter and it isn’t that easy.

I don’t know what the answer is, but I really, really hope that cases do whatever they need to do to stop any closures or measures being implemented. I don’t want our children at risk of Covid, but I also don’t want their learning and mental health to be affected any more than it has been already.

I really hope that the booster vaccinations help with hospitalisations, and that the new variant doesn’t put more pressure on the NHS. I hope that people wear masks and are careful as they celebrate over the Christmas period, doing regular lateral flow tests and keeping themselves and others safe – but I hope people do find a way to celebrate.

But most of all, I really, really hope that all of our children are back at school after Christmas and that everything that is needed is put in place to keep them, and all the staff in schools safe.

I admit it, I was late to the Strictly Come Dancing party, but now I love it! My autumnal Saturday nights are spent watching orange celebrities (sometimes in the broadest sense of the word) dressed in sequins dancing with their professional partners. In the same way that X-Factor was ‘the’ Saturday night show of my 30’s, Strictly has become the show of my 40’s.

This year, however, Strictly has done something truly remarkable. Strictly has shown that if things are adapted, taught and/or choreographed in a way that is accessible to the learner, the playing field is levelled, and people can showcase their ability and potential.

Rose Ayling-Ellis is an amazing dancer. She has grace, poise and is (in my opinion) beautiful to watch. She and her partner Giovanni deserve the high scores they are getting each week because their dances are breath-taking. Rose is a deaf actress. She feels vibrations through her feet, but cannot hear the words to songs. She dances, on time and with amazing natural skill, through muscle memory and counting. Her professional partner, Giovanni Pernice has said in interviews that being partnered with Rose has made him a better teacher. He has adapted how he teaches her, and the result is just…..well, have a look at the dance from 13th November, a couple’s choice dance with an incredibly emotional and suprising part in the middle that was choreographed as a tribute to the deaf community. Click here to watch.

Maybe not in the same way as Rose, but John Whaite and Johannes Radebe, who are the show’s first all-male partnership, are also incredible to watch. Boxer Nicola Adams was part of an all-female partnership in 2020, but had to drop out because of a positive Covid test. This year’s partnership has been seen as being controversial at times, with many negative comments on social media. For me, though, this is another example of how the right choreography can be inclusive. I love watching them dance because either or neither of them may lead (and it may change throughout the dance), and it is a fabulous example of how something that is ‘ground-breaking’ in terms of prime time TV can look so natural and right. The dances have been choreographed for them, a same sex couple, with a dance where they are both equal and it just feels right.

I just have to mention Dan Walker here too – another one who’s had a few nasty comments because others have been voted off and he’s still in (get a grip, it’s a TV show!). I think Dan is fab. He’s a journalist and TV presenter. He admits he’s not a dancer – but he is! He might not be the best, he might not be a natural, but he is a bit of a Skware Peg in the world of Strictly, and his joy of dancing inspires me to keep kitchen dancing. He probably won’t make the final, but who knows? His smile as he dances and his happiness when he gets high scores is lovely to watch.

Yes, Strictly is a light entertainment show. Yes, Strictly is ‘just’ a dance show. However, this year, in my opinion, it is a little bit more than that. This year Strictly is showing us all the magic that can happen when adaptations, understanding and accessibility are in place.

We have just finished a two week half term (something the school started about 7 years ago, and I think it’s a really good idea – this term always feels so long from a parent, teacher and student point of view), but last week was a long week in this house. Our youngest was feeling off. He was low, he was lethargic, and as keeping with 2021, we did a lateral flow test just to rule out Covid, and that was fine, he was just low.

I asked him if he knew what was wrong, and I tried very hard not to keep asking if he was OK and if he felt any better/knew what was wrong/wanted to do something/would come for a walk. He didn’t, he was kind of ok, and no to the rest. I did explain that we just have days or weeks when things feel crap, and that we just have a low mood for no apparent reason, but I think that was more for my benefit than his.

He had been invited to a friend’s to revise (first A-level tests this week), and then had been invited to a Hallowe’en/bonfire night party, and then he was going to an Anime-con at the weekend. I wanted him to do as much as he could manage, but not so much he’d start the new half term with a melt down.

There was much procrastination, sighing and shoulder shrugging, but then he decided he wouldn’t go and revise, and that he couldn’t go to the party – he just wasn’t up to it. He did, however, manage the Anime-con, and although he was socially exhausted when he got home, he enjoyed it. Our eldest took him, and he enjoyed it too, and their stories of the sights they saw kept us amused when they got home.

On top of this, our eldest had a publishing deadline (a bit of a secret project so I can’t say any more), but that meant that he needed my help last week. ADHD and dyslexia make any kind of project harder and more tiring, so I am on hand to type words, act as PA and do whatever else is needed. Amazingly (I have no idea how), the deadline was met, and all is good in his world again.

Last night, I felt awful, I was so tired, and felt almost hungover. Today isn’t much better. I had weird dreams last night, and didn’t feel at all refreshed when I woke up this morning. I have a mini burn out. Last week I was juggling their needs (and quite right too, I am a SEND mum, this is how it is), and my work. On top of that our dog is terrified of fireworks and so we had two dreadful evenings with him, and then I picked up 4 rescued ex-battery hens yesterday, and they are in a dreadful state. All that means that my cup is empty, I am out of spoons, I am done – but just for now. I need to accept that, and give myself a few gentle days just to refill. I will work, but I will also rest. I will do what I need to do, and everything else will wait.

I also need to listen to my own advice – as I told a friend, another SEND mum who’s having a tough time at the moment, parenting is exhausting at the best of times, but parenting additional needs takes super hero strength. So now I am going to hang up my cape for a day or two, and just breathe and rest whenever I can.

Three years ago, according to Facebook memories, our son (finally) got his autism diagnosis. He was 13 years and 11 months. The process took 3.5 years. I have blogged about it before, so I won’t go over that again (although if you’re interested, scroll back through past posts) but compared to some, that was a quick process. The NHS is overworked, and CAMHS and Children’s Services even more so, so I am grateful that our tenacity as a family and our son’s pushing to get the diagnosis he knew he had, got us to the 15th October 2018 and we had confirmation of what we had known all along.

Getting a diagnosis doesn’t suddenly make everything fall into place – we still battle, advocate and educate – but for our son it worked as a lens, so that people could see him rather than his mood, his mask, his scowl or his reluctance to get involved. For him, it has been a hugely positive thing, and he embraces his neurodiversity and his amazing mind, as does our older son with his ADHD.

I have blogged countless times about battles, wins, moods and so many other things, and I do acknowledge that there are many parents of neurotypical children who have been through the same. I blog when we have wins, I blog when we have bad times, and I blog when my mood necessitates me putting my feelings into words and sharing with you all.

Today, however, I am blogging to tell you that it can be ok. That there is a place for everyone, and when we find that place, the troubles don’t go away, but they get easier to manage. The summer GCSE results brought us the grades we were expecting; excellent grades in sciences and maths, ok grades in both English qualifications (and he got above the magic 4 so has level 2 English) and the other subjects were in the middle. This was an fantastic achievement, even more so as he is in the cohort of 2021, and it’s all down to his mantra of ‘work smart, not hard’.

He is now doing A-levels in biology chemistry and maths, as well as an EPQ which will centre around genetics. We had parents’ evening on Tuesday and it was amazing – not bragging parent amazing, but really amazing! He has found his place, and he fits perfectly. What mattered more than the glowing reports from the teachers, however, was that dyslexia, autism and anxiety weren’t mentioned at all. There was no ‘this is really good, but there’s an issue with spelling/organisation/processing/whatever’. He is doing really well. That’s it – period, full stop, end of sentence. He doesn’t need coping mechanisms, he doesn’t need to break down or overcome barriers, he doesn’t need anything more than his work printed on purple paper, because he is in the right place doing the right subjects, and it’s fabulous. This is how education should be – students taking subjects that inspire them, that they enjoy and that are delivered in a fully accessible way.

All students have a place – be that sciences, arts, vocational courses, humanities, music, sport, for example. When they are on the right course and being taught in the right way, things start to fall into place. A-levels aren’t right for everyone, and neither are apprenticeships, B-Techs, T-quals or NVQs, but there is something out there for everyone, and if we help them to find it, it really can be ok.

Our eldest is 25 tomorrow – he should have been 25 a fortnight ago if he had been born on his due date, and he should have been 25 today if he had arrived on the day I was admitted to hospital in labour! This characteristic has stayed with him – he will always be ready in 5 minutes, even when he needs to eat, shower and get changed, and wherever we are going is always 20 minutes away, even if it’s over 50 miles!

Our youngest will be 17 in 10 weeks, and driving lessons are already booked. He was a day early, even though the midwife told me that I would be waiting at least another week when I saw her 3 days before he was born – and he has kept this characteristic! He looks like he won’t be ready to go somewhere, but then from nowhere he’s standing by the door dressed and raring to go (although as a teen, that might be a slight exaggeration!).

Our children are amazing – we love their company, their chatter, their insights, their caring natures and their characters. Spending time with them has always been a pleasure, never, ever a chore. Even though they both have their difficulties, we wouldn’t change anything about them, but we would change the world and how it sees them sometimes.

We had a conversation at the weekend – or at least I posed a question. 25 years ago, when I was in labour, if we had been told about the severe dyslexia, ADHD and OCD and chronic kidney problem, what would we have done? And again, if we had been told 17 years ago that our rainbow baby would be autistic, dyslexic, have GAD and Irlen syndrome (as well as spending 2 weeks in SCBU ICU) what would we have done?

PANIC!

We would have panicked, doubted ourselves, expected the worst, and we would have probably treated them differently. It would have been much worse. Even if we had read all the books and spoken to everyone who knew anything, and searched online for everything we still wouldn’t have been ready, and we would still have been surprised, overwhelmed and completely unprepared.

If you have met, taught or if you are a parent to a person with ADHD, you have met that one person. The next person you meet with ADHD will be completely different. The same with ASD, anxiety, dyslexia, OCD and every other hidden disability you could list. Books help, support groups are amazing (usually), but nothing could have prepared us for our rollercoaster. And I think being forewarned would have made us much worse parents.

We may have expected less. We may have inhibited our amazingly eclectic individuals because a book told us something, or because they ticked a box (or didn’t tick a box) for something else. We may have not taken them on adventures because a leaflet said they wouldn’t like it or wouldn’t manage. We may not have been sarcastic to the teen because, you know, autism, and yet he is so sarcastic with such a dark, dry sense of humour. We may not have encouraged our eldest to play team sports because of how long games are, and would he concentrate for that long – and yet he had England County rugby trials when he was 21.

If we had known what was coming, we would have focused on the negatives and potential problems. If we had known what was coming we would have been really worried. If we had known what was coming we would have doubted ourselves even more than we have done. If we had known what was coming, we would have inhibited them, stifled them and they wouldn’t be who they are today.

Today we are blessed with two huge (both over 6′ 4″) giants who are just the absolute best. They are neurodiverse, and help us see the world in new ways, as well as having the most bizarre conversations and opinions. They bring so much happiness and joy to us, and are the movers and the shakers who touch everyone they meet, and who change the world for the better. The rollercoaster ride with them is awesome, and as they both become adults, we just need to hold on tight to keep up!

Everyone has things that they are good at (mine include writing rambling blog posts, and science) and things that they are not good at (for me, spelling and being tidy). We all know that, and we all accept that (although it can be hard to acknowledge our own strengths and accept our weaknesses). The education system, however, dictates that some subjects (maths and English) need to be taken until a learner either reaches 18 or reaches a certain level, and if that level isn’t reached, maths and English can then become integral parts of apprenticeships no matter how old the learner is. Everyone is expected to get a 4 or above at GCSE or an alternative level 2 qualification in English and maths. However, I feel that although that should be a good thing, it’s not always attainable. Some people just aren’t that capable in those subjects – but they will be far more capable of achieving other subjects.

As I have typed countless times before, both of our children have dyslexia, and although these categories or classifications aren’t used any more, one has severe dyslexia and the other significant dyslexia. This means that English as a written subject is tough for both of them. However, due to having a supportive family and access to different qualifications, they both have level 2 English, one with 2 GCSEs (literature and language) and the other with Functional Skills. They also both have level 2 maths.

Our eldest is a natural sportsman. Apart from paddle boarding, we have yet to find a sport he doesn’t do well in – everything from surfing to rugby to American football to cricket to shot put, he just ‘can’, and usually effortlessly. He is also incredibly musical, and has self taught a variety of instruments. Both of them are artistic, and both can use a range of media to create artwork. For them, art is relatively easy. I cannot do sport, it’s not in my nature – my hand-eye coordination is relatively poor, and I just don’t take competitive sports seriously. I am musical, although not like our eldest, and I am creative, but more with making than with fine art.

Our youngest is taking 4 A-levels in maths, physics, biology and chemistry. When people are told this, most of them wince or make a comment about ‘smart lad then’. Yes, he is – they both are – but these subjects play to his strengths. He is a scientist, he has a scientific and mathematical way of looking at the world. While this won’t be an easy combination to study over the next 2 years, it will be academically fulfilling for him. Already after a 3 week taster, he is enjoying the subjects more because they are harder than the GCSEs were. For him, taking English Language, English Literature and Drama would be hard subjects because of the way these are taught and assessed, and the subjects themselves – he doesn’t enjoy English as a subject and he is not comfortable in drama.

Whether we find a subject easy, hard, challenging or just impossible is down to our strengths, interests and motivation. It saddens me when I see reports about cuts in funding to art subjects – these are not soft subjects, and we need the dreamers and people with imagination to dream up new things and solutions to problems. Yes, we need scientists, we need doctors, and we need teachers and farmers and lorry drivers and shop workers and cleaners and everything else! But what we need most of all, I think, is people doing jobs that play to their strengths, doing jobs (or courses or subjects) that make them feel fulfilled and that make them feel happy.

Having level 2 maths or English, or having 9 GCSEs, or having a PhD won’t make you happy unless you are doing what you want to be doing. We need to stop ticking boxes and making people fit into societally decided round holes, and instead we all need to embrace our square peg-ness and do what we are good at, and what makes us happy – and then then world may be a much better place!

PS Yes, this is idealistic, but in these strange and scary times, idealism and optimism and hope are very, very important!