There are many memes on social media about how our wonderful Skware Pegs can feel isolated, how they can feel trapped or unliked or that there is no one out there for them to like, but parenting the Skware Peg can feel quite isolating too – and I have written about this before (here and here)

I am lucky that I am part of a team – we (my husband and I) are a unit. We both deal with the ups and downs of parenting, we both share the laughter and the tears. However, I work part time and my main job is parenting. My husband works ridiculous hours as his main job, and so a lot of the parenting issues fall to me.

I have never been the most social of people – give me in depth conversations in a small groups rather than big nights out, any day – but having a child who didn’t do play dates, and now doesn’t play online, socialise or want to see many of his peers out of school exacerbates the issue. I do have some very, very good friends at school, but I don’t become part of a wider group because I can’t really do late nights, definitely can’t stay away overnight, and this then becomes a habit that is hard to break. My husband doesn’t have a busy social life either, but his job means that he has work colleagues and occasional travels.

On top of this is the isolating feeling that we are the only ones going through what we are going through. I have written before about my normal being different to your normal (here), and I am really feeling that at the moment! Our eldest was a door slamming, shouting teen. Our youngest withdraws until the stress causes migraines. I really miss the door slamming at times (something I didn’t think I’d ever feel when we were in the midst of it 7 years ago). So, even two siblings who have been brought up the same, in the same family have completely different experiences, and give us completely different experiences.

I could talk to another parent with boys who have ADHD and ASD. We could chat about our ups and downs, but they would be different. I am part of a small WhatsApp group where the parents all have children who are autistic. Some of there stories make me feel like a fraud, especially when it comes to stories of toddler years, because although it was tough at times, we had already gone through it once with a neuro-diverse child, so our normal was never ‘normal’, we just did what we had to do. We managed, we used coping mechanisms, and we were OK. Other stories make me feel jealous (which feels very odd to admit to). You all sleep all night every night in your own beds?? You get to go out and go away for weekends?? You can buy more than one brand of cheese, and have never felt the fear of standing in the only supermarket that sells the brand of cheese he eats and seeing an empty shelf??

I get that all parents have this, that no two children, even identical twins, will be the same, but children with additional needs have different milestones, have different targets, have different successes, so we can’t even look through a parenting book to see where we should be right now, as there isn’t a book written for us. So it gets hard because we can’t share our experiences like other people, and our social media feeds look like all we think about is ASD, ADHD, ODD, Dyslexia, Dyspraxia or whatever. It’s always at the front of our thoughts, but the shares are to try and get people to appreciate what we do, day in, day out.

And I think that’s my point. No one has parented our children and their individual additional needs, so no one knows what we’re going through. No one knows our relief of a Sunday morning pre-school stress migraine only lasting 2 hours, with minimal vomiting at the end of it. No one knows our relief when a potential explosive anger episode diffuses with a slammed door and loud music. Other Skware Peg parents will have their own additional needs to deal with. They may be similar, but they won’t be the same. And the thought that we are the only ones going through this sometimes feels isolating.

My youngest and I were talking about holidays with my mum (we go away for a week with my parents every year), and he pointed out that in two years we will have to make sure our week doesn’t clash with GCSE results week. How can my little baby be just two years away from results? And how can my little baby (now standing over 6′ tall, but still my little baby) be spending this summer worrying about Y10 and the ‘proper’ start of the GCSE syllabus? Why, in the big scheme of things, do these two years and then one day in August mean so much, and cause so much stress? And then why do most kids go on to another two years of stress and another August day of angst, followed by celebrations or disappointments?

I’ve written blogs before about exams (see here) and how you can have success without straight As (see here), but every August I get saddened by the posts on FB from ecstatic parents & students, and the lack of posts from others, who, I assume, didn’t get the grades they wanted or needed.

The world is in turmoil. Social Media, of which I suppose I am a part with this blog that shares my opinions and musings with the world, is affecting voting patterns, elections, is dividing the world and fuelling the far right and the far left. Our planet is burning, politicians are encouraging hate and division, strong economies are on the verge of possible recession, and yet a collection of As and A*s are all that seems to matter this month.

But the problem is, they do matter. These amazing young minds who could change the world, or indeed, could save the world are judged on a piece of paper they may have already picked up if they live in Scotland, or will pick up this week or next in the rest of the country. There will be amazing, unstandardised minds that really could make a huge difference, that don’t do well in standardised tests, and so won’t get the place at uni or won’t get accepted onto an A level course. Although BTECs and Apprenticeships are just as good as A levels and degrees, they don’t all lead to the same point.

There may be a young woman with exam-limiting dyslexia who can visualise a cure for Parkinsons, but she will be lucky if she gets 5 GCSEs, so will do an apprenticeship in something science related, but this route is unlikley to lead her to medical research. Or maybe there is a young man with ADHD who just cannot sit through an exam. Add to this his dyslexia and low self esteem, and the exam results will never reflect his true ability. He wants to teach and inspire young children, and although the BTEC route he’s taking may lead him to applying to do a BEd, it’s unlikely he’ll stick at the course, and we lose the potential of an inspiring male primary teacher that could create ripples and inspire more.

Conversely there may be an incredibly academic young man who wants to be a make up artist and hairdresser – both worthy professions – but because he is a straight A student, and because these still aren’t seen as male profesions, he is encouraged and guided to do A levels, go to university and get an office job that he will be good at, he will earn a good living, but the job won’t ever make his soul sing!

So, here we are. My teen is about to start his GCSEs and he’s worried about the results already (pressure from him, not us). Thousands of teens have opened their Scottish Highers results already, thousands are going to open results today, and thousands more will open results next week. BTEC students will have had their results at the end of July. Results days feel like they mean everything, and in some ways they do, but also they mean nothing. They are a reflection of collection of hours spend in rooms regurgitating information onto a sheet of paper. They do not reflect kindness, empathy, disabilities, innate abilities, happiness, or hurdles that have been overcome.

If today is your day for results, then I wish you luck. I also wish you the confidence to step back and let your teen decide what the next best step for them is – be that work, travel, uni, A levels, retakes, apprenticeships or whatever. Also give them the courage to change their minds. As Baz Luhrmann says in the fabulous song ‘Sunscreen’,

‘ Don’t feel guilty if you don’t know what you want to do with your life.
The most interesting people I know didn’t know at 22 what they wanted to do with their lives
Some of the most interesting 40-year-olds I know still don’t’

And on that note, whatever today brings, sit back and listen……..

Greta Thunberg has made headlines many times already in 2019, and for good reasons. She is a 16 year old who is still at school, and she has made a stand against the inaction of countries and global companies to acknowledge and strive to stop climate change. She is an articulate person, and has a very important message for us all. She is also autistic. This has been mentioned time and time again, and not necessarily in a positive way, especially in some of the daily newspapers.

In the book Neurotribes, Steve Silberman argues that neurodiversity is needed to drive society forward, to change things and to make sure that we evolve. Square pegs are seen throughout history, people like Da Vinci, Newton, Einstein and more recently Jobs, Gates and Temple Grandin. Some of these people may have had diagnosed conditions, but others were just square pegs who pushed the boundaries of what was accepted, and took things in the direction they wanted to go. Many of these didn’t listen when people said no.

More and more research is now backing up the amazing potential that square pegs have. This article describes very accurately the advantages that ADHD can give – but obviously it can cause people lots of problems too, especially as society expects us to conform more and more. The way the autistic brain can help businesses develop and move forward is also being acknowledged (link here). A big meta-analysis (Gyamathy, 2009) also highlights the potential our skware pegs have – but only if they are nurtured and taught in a way that helps them grow and learn, and they need to be accepted.

And this really does happen – for those of you who are parents of strong willed children, skware pegs and teens – think about this. Our eldest son (ADHD & Dyselxia) has asked why, why not, but what if, I’ve been thinking, can we try….since he could talk. He has also disagreed with us, told us no. He has fought against us, school, uni and work when he believed that he was right and other things were wrong. He has been ‘challenging’ at times, and still is, occasionally. BUT…..

He is 22, he saw things weren’t working in the village. He believed that the people in charge were doing things wrong. He asked why, why not and couldn’t we just….? He disagreed, he said no and he did something about it. Last week in the local elections, at 22 he became a District Councillor. At 22 he has beaten an established labour councillor. At 22 he saw something that was broken, and he has put himself forward to try to fix things. At 22 he challenged the establishment.

When you are arguing with your teen, teach them right from wrong, but encourage that free spirit. Encourage that amazing mind that can make a difference. Encourage free thought and discussions. Encourage them to follow their own path and to walk to their own beat & rhythm. Encourage them to soar above you & make a difference!

Square pegs can, and will, change the world, but we have to give them every opportunity to believe in themselves and make it happen!

References:

Davis, H (2019) How thinking differently about autism is helping businesses perform better The Telegraph ( www.telegraph.co.uk)

Gyarmathy, E (2009) “Neurologically Based Achievement Difficulties and/or Autism Spectrum in the Talent Development.” Pszichológia,

Silberman, S (2015) Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently Allen & Unwin, London.

White, M (2019) The Creativity of ADHD Scientific American (www.scientificamerican.com)

Let me introduce you to two friends. Laura is 42, her birthday is in February, she has blonde hair and brown eyes and is blood group B+. Marie is also 42, February birthday, blonde hair and brown eyes and is blood group B+. The similarities don’t end there – they are both middle siblings, they both have Maths degrees and are both now working for the same company, in the same department. John also works in that department, and it was his birthday last week. He invited everyone out for drinks at lunchtime, so Laura and Marie went too. John ordered bacon butties and a drink for everyone and had phoned to pre-order to save time as their boss is strict with lunch break timings.

At the pub, he gave everyone their buttie, but there was a problem. Laura is gluten intolerant and a vegetarian, so couldn’t eat the food. John was shocked, as he had popped out for lunch the week before with Marie, and she had really liked the bacon buttie. Laura tried to explain that she wasn’t like Marie, and she wasn’t being difficult, but just could not eat the sandwich. John was shocked. Laura was the same age, same gender, same birth month and even the same blood group as Marie. That should mean that she likes the same food and be able to eat the same things as Marie. It didn’t make sense that she couldn’t physiologically eat gluten, and that she chose not to eat meat. It wasn’t right. If one blonde, 42 year old B+ woman could eat bread & bacon, then surely everyone ‘like that’ could…….

Obviously these are fictional characters, and this hasn’t happened, but people with learning barriers, hidden disabilities, with some health conditions face scenarios like this all the time. They hear phrases like ‘it can’t be that bad as my friend has fibromyalgia and they work full time and travel all round Europe’ or ‘my friend’s son has ASD, and CBD oil has cured them’ or ‘that isn’t a symptom of ADD’ or ‘are you sure you’re depressed?’ and so the list goes on.

Most of these phrases are from well-meaning people. They give advice because they think they are helping, but more often than not, unsolicited advice that starts with phrases such as ‘are you sure’ or ‘my friend’ or ‘have you tried’ isn’t very helpful. At times it can even be hurtful or upsetting. Most of the time we are sure, we have tried, and much as we wish your friend well, it’s unlikely she or he is in the same situation as us. The same goes for holistic therapies – they are amazing but they need to be used alongside conventional treatment where needed. Sometimes they don’t work, sometimes they are like a holy grail that makes sleep happen, or makes someone concentrate. But just because your friend’s hairdresser’s brother’s sister in law used Vetiver Oil and CBD to almost eliminate fibromyalgia or ‘cure’ dyslexia, doesn’t mean it will work for us – and it doesn’t mean that we will necessarily try it!

This has turned into a negative rant, but that’s not how I meant it to be. My point is that we are all, whether neurodiverse or neurotypical, different and unique. We need to share advice and ideas, but we need to do it without judging, even if that judgement is unconsciously done. We need to celebrate our differences and support each other instead of comparing and criticising. We need to respect that every child has their own strengths and weaknesses, and that even two people like Laura and Marie are likely to have some similarities and a lot more differences.

My child with ASD is my child with ASD. He will do things that others do and he will also do things that are unique to him. He will be different to other children with ASD because he isn’t them. The way the condition affects him even day to day can differ. Just because he went into a cafe last week doesn’t mean he will be able to cope with it this week. The same goes for any child, whether they are a skware peg or not. They are all different, they are all special and all unique. We need to encourage such diversity and encourage our children & ourselves to embrace it when we see it in others.

The main problem with a late Easter, is that is makes the spring term so long (for teachers and for students). The Autumn term seems to go on forever, but the spring term doesn’t usually feel as bad, but here I am, typing away while watching the clock count down to hometime. As we are close to three counties, some schools broke up last week, we break up today, and some other schools break up next Thursday or Friday.

Ahead of us are two weeks of lazier mornings, days out, baking, camera shopping (ARGH!!), me juggling work and him enjoying the lack of school but also stressing at the lack of routine. I’ve tried to stop this before it starts by asking him what he wants to do, but I bet if you asked any teen, not just s skware peg, the answer would be ‘I don’t know’. Same to who do you want to see, is there anywhere you’d really like to go, and do you want to go anywhere for breakfast/lunch/dinner on any of the days?

I do have things planned – we will have day trips to local cities, we are going to meet up with friends, we are going to go camera shopping (savings being used as he wants one of his own for GCSE Art), and we are going to have duvet days watching trash TV with the dog sitting with us. We are also going to go on bike rides, go swimming and get outside as much as possible. We ought to spend some time revising for the school tests that are a week or two into the new term, but we probably won’t do much of that at all!

The most important thing we are going to do is listen to our bodies and our minds. If we end up having more duvet days than bike rides, that’s fine. If the junk food outweighs the healthy options next week, who cares? During the next 2.5 weeks (back on Easter Tuesday) we are going to practice the pause, we are going to breathe, we are going to take it easy, and, I hope, we are going to smile!

Events over recent weeks have made it clear that how we interact with our children (be they skware pegs or neurptypical) and the way we interact with others, shapes the way our children interact with people in their world. This has nothing to do with being a single parent, working full time, having a nanny or being a stay at home parent – this is all about how we, or how the people who look after our children, treat them, talk to them and how they treat other people.

A prime example of this is how adults respect people around them. Take a parent whose child plays a sport at weekends. Their child is a goalie in the local football team. The team is OK, they win some matches, they lose others. Some children want to be professionals, others are there because they just enjoy the sport, and then there are some who are there because their parents wanted to be pro footballers. Think of the parent who wanted to be a pro footballer. This parent stands on the sidelines and criticises the other team members, and thinks they’re not good enough to play on the same team as their child. They think the only reason the opposition scored more goals is because the defence was rubbish. They also think the coaches don’t know what they’re doing because the team has lost matches this season – the coaches are parents too who have put themselves through the necessary training, and they volunteer their time for training sessions, matches and club meetings. The trouble is that the child has heard all the moaning and disrespectful talk, and is now picking on other team members and moaning about the coaches too. The child is becoming a disrespectful bully because that’s the behaviour they have seen in their parent. Even if the child had the potential to be the player the parent wants them to be, their lack of respect to other team members and coaches means that the likelihood of them becoming a professional player gets less and less.

However, the child that turns up every week, listens to the coaches, supports the other team members probably won’t become a pro player either (because the number who do is tiny), but they learn how to be a team player, they see how being respectful is important, and they learn how to earn respect from other team members and the coaches. They are learning life skills that will help them for the next 70+ years.

We need to look at how we are with our children. We need to listen to their questions and queries, however small and insignificant they may seem at the time. We need to show them that our love is not conditional on A grades (or 9s in the new system), or being picked for the school team, or the choir or having the lead part in the school play. They need to learn from us that all that matters is that they do their best on that day. We aren’t perfect all the time, and we must stop our children feeling they have to be. We are also allowed to have bad days, or sad days, or days where just being is hard work.

We also need to look at how we react to people around us – do we let a car pull out in front of us, do we put away our phones when someone is serving us (at the supermarket, cafe or anywhere), do we put away our phones when our children talk to us? Do we say please and thank you? Do we offer to take a trolley back for an older customer? Do we try to make the world a nicer place? If we don’t, our children probably won’t either.

We just need to be aware of what we are doing, as our children won’t always do what we say, but they will usually do what we do.

I am definitely guilty of looking at other people’s lives (as portrayed on Social Media more than their real lives) and feeling feelings. This may be out and out jealousy of holidays, cars, lifestyle choices, which is incredibly silly as I am actually the kind of person who likes to see others achieve and be happy, but on a bad day, that green-eyed monster has a field day in my head, and then I end up feeling cross with myself for being so reactive. I feel bad for being jealous, and I still feel a little bit down that we are at home still recovering financially from Christmas (or whatever) while others are basking on exotic beaches (and then the cycle starts again). But, I think most people do this from time to time, if they are honest with themselves.

A more dangerous form of comparing that I do is looking at other people, or reading other people’s stories, and think that they have a life that is much harder than mine, so I shouldn’t feel overwhelmed/down/that I am struggling. I also hear myself saying things like ‘I know so many people have it much worse than we do but……’, or ‘I know that the boys don’t have A, B or C but…..’ and then I feel guilty that I’m having a bad week. I share so many memes about hidden disabilities, additional needs, ASD and ADHD and then I almost dismiss hidden disabilities when I am having a tough week, and I berate myself for not coping more.

The thing is, we are all allowed to have tough weeks. We are all allowed to feel overwhelmed with 21st Century life, whether we are single, married, parents, parents of children with disabilities or whatever. It really doesn’t matter that this week Roberta and her daughters are having an amazing week, all that matters is that you aren’t. It doesn’t matter that Roberta works full time, is a single parent to two children with physical disabilities, and that they have all managed to get to the top of Ben Nevis this weekend (but well done Roberta!) – if you are having a tough time, you are having a tough time, and you need to ask for help if you need it. You also need to allow yourself to have a tough time, to struggle and to work your way through it without comparing yourself to others. That’s part of the reason why I started writing this blog, so that other people can share our highs and lows, and see that we are all on this strange roller coaster called life. We need to stop looking at others through rose tinted glasses, and allow ourselves to feel whatever feelings our own roller coaster brings us.

Today, as mentioned in the earlier post, we were going to see the da Vinci exhibition at Millennium Galleries in Sheffield. I saw lots of amazing sketches by da Vinci – real, original sketches, not prints or copies – and I was quite overwhelmed by the realisation of what I was looking at. He saw a noisy museum and lots & lots of people. I saw iconic pictures, he saw buggies and toddlers and parents and older people and people in the way and people blocking doorways. I heard people talking about the pictures, he heard unbearable noise. We still looked round the exhibition, and also looked at the other exhibitions in the gallery, and then we left.

We went to the cafe, but that was too noisy as well, and I felt I had to mention that he was autistic and was there anywhere quieter, but there wasn’t. We then asked at the help desk if there were any cafes close by that might be quieter, and when the man gave us a quizzical look, I had to explain why again. We found the cafe which was lovely, just what we needed, and then as we still had time to kill before heading home, we went to the National Videogame Museum (also in Sheffield), and as we went in, the noise hit us, and we had to leave, but before we did, I asked if they had autism hours – mentioned ‘it’ again! Now, none of this matters, and it’s nothing to be ashamed or worried about but this was the first time I felt compelled to ask or explain.

Still with time to kill (meeting eldest as he finished college) we ended up buying safe food from Gregg’s, and then finding a quiet platform at Sheffield Station to eat, drink and people watch until it was time to go (and if you’re ever in a similar situation, the benches between platforms 8a and 8b are just next to a cafe and aren’t busy at all!).

No rugby tonight as he’s teetering at tipping point for a shutdown, so lots of hugs, the weighted blanked it out, and we’re watching trash tv. We’ve talked about the day, and he does remember the pictures and not just the people, and he remembers all the things we saw in the other exhibitions, so it wasn’t a wasted trip at all – and we saw sketches and pictures by Leonardo da Vinci!