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!

It’s been a strange few weeks. The youngest has had exams and has had to choose GCSE options (how can my baby be this old), and the eldest has settled well into a new job which, when you have ADHD isn’t always the easiest thing to do. Apart from that, life carries on. We keep watching for triggers when we’re out, and we do all we can at home to make like as easy as possible for all of us, but it is a rollercoaster of trivial things that can make or break a day.

Our youngest is very sensitive to tastes and smells, so he tends to eat a lot of beige food with fruit thrown in for a bit of healthy eating – and I think this is a teenage thing as well as an ASD thing. Most teens would live on beige, bland food that is 95% carbohydrate, with a token amount of protein and fruit/veg. I think this is partly because they need the energy to grow, but also so much is changing in their lives, with their bodies and in their heads, that comforting, safe food is a stable thing for them. Anyway, I digress…..

On Sunday he woke up, didn’t want to go to rugby but was persuaded – partly because the team was short of players this week as it was the beginning of half term so some were away, and partly because all he had done on Saturday was get washed and changed into clean PJs and then had slothed all day watching trash TV (which was fine as it was the first day of half term). We get to the club, and he was asked to play in a completely new position (for those of you who know rugby, he’s normally 2nd row or on the flank, on Sunday he was fullback), and he played the best he’s played for weeks, got lots of compliments and left the club smiling!

We then went to a local farm shop for dinner, vegetables and to raid their deli counter for lunch. There was a lovely smell when we walked in because there was a local producer giving away samples of a hand made curry mix. J asked me to try some, and I did, and then (brace yourselves here) he asked to try some. THIS HAD ONIONS AND PEPPERS IN. He didn’t just sniff and lick it like he normally would, he put the covered naan bread in his mouth AND ATE IT!!!!!!!! And then, he tried the other sauce! To any parent of a picky eater, this is like finding gold at the end of a rainbow. Suffice to day, we bought a jar of the sauce and had it for dinner last night (and he still ate it).

But, ASD being what it is, the rollercoaster took a downward trajectory yesterday. We went to The Tropical Butterfly House near Sheffield as they now have a male sloth living in the butterfly house, and Mum and I wanted to go & see it. We paid to get in (not cheap, but not too bad if you were going to spend a few hours there), and then as we walked through the entrance, I could feel the anxiety building. There were people. There was noise. There were toddlers running round. It was half term, so this was to be expected. We went into the butterfly house, and saw the sloth, but it was even noisier in there, so we didn’t look at the sloth for very long. We came outside and there are lots of other animals there, so we started looking at these. The people were an issue still, but looking at the animals were fine. However, they have plastic dinosaurs at random places round the outside area. Cue ranting about how we don’t know what they sounded like, some had feathers not scales, and why were they here?

It got worse…..there is an animal walk through area where they have agoutis and wallabies and you can get up close if the animals want to come near – great idea and a good set up. At the back of this enclosure was another dinosaur….and a cave man. The anger that we got from this was huge. It was bad for education, there were no dinosaurs living with cave men and women, anthropologists have shown that the skull and neck anatomy of Neanderthals has the space for a voice box like ours so they could probably do more than just grunt…….and so it carried on. It was not a good trip, and we were done within about 40 minutes.

I persuaded him to stay for a drink, so at least the anxiety and anger weren’t the last feelings he had there, and he was quite cheerful on the way home, and we didn’t have a meltdown.

Today we are off to an art gallery to look at paintings by Leonardo de Vinci. Fingers crossed there are no plastic dinosaurs there……….

Studies have shown that teenage brains are a little bit like butterfly pupae, in that neurons re-route and go from caterpillar brains to butterfly brains (to continue the analogy) and so although their brains do not turn into mush like an actual pupa, they do go through ‘funny phases’ that, along with hormones, body changes and hair appearing, turns them into very strange beings for a few years.

Whether your teen began their puberty years as a skware peg is irrelevant, because all (?most?) teens become skware pegs as they find out who they are. They are supposed to rebel against us, to push boundaries and to be general pains as they are re-forming neural pathways and becoming the adults they want to be.  The problems come because they often don’t know who they want to be.  Society and school put pressure on them to conform, to grow up, to have a job and a career, to be all sorted in terms of GCSEs, A-levels, degree and career  by the time they are at the end of year 9 at the latest. At 14 they are supposed to have the next 50+ years all sorted out. The thing is, I’m in my 40s and I don’t have the next 5 years all sorted out, and I am a functioning grown up with GCSEs, A-levels, two degrees and several different careers under my belt – and that’s fine!

We (society not parents) put enormous pressure on our teens. 

We expect them to turn up at school 5 days a week when they probably aren’t enjoying it, and they know they have to stay in some kind of school until they are 16, and have to stay in some kind of training until they are 18.  When I have had a job I didn’t enjoy, I looked for something else and I left. Our teens can’t do that.

We expect them to be able to manage their time online, to juggle homework, revision, a social life and to be nice to their families when needed, and yet I know I spend far too much time checking emails and being on Facebook in the evening.  I also moan when work spills into the evening and I end up working late – but yet they have a day at school and then have to do homework, coursework as well as talking to friends and bowing down to social pressures by playing online.

We expect them not to be moody or grumpy, and yet their bodies are changing shape growing hair where hair has never grown before, their voices are changing, body parts developing and hormones are flooding their bodies and they need to get used to these new feelings, urges and changes.  It’s no wonder they get moody or grumpy – and the hormones add to this.

So, what’s the answer? I think the answer is to give them our time and acceptance.  To listen to what we may feel is insignificant problems but to them is the end of the world.  Having gone through this once already, I definitely feel that teens need parents at the end of the phone or waiting at home much more than toddlers do.  I found it easier to work more hours when the children were little, and my working life is interrupted lots more now – and it’s very hard to stay patient when you get an ‘urgent’ phone call about something that’s lost, or something that has been said or a teacher threatening detention, but it matters to them. Therefore we mutter ‘ffs’ under our breath, and we listen without (too much) judgement.

We also need to deal with moods. To help with our youngest’s moods, low weeks and anxieties, we came up with the idea of having mood parrots that travel with us – I think I may have mentioned this before, and it’s an idea that was approved by a clinical psychologist. If we have a bad, low, worried, angry, pissed off, tired or whatever mood, we say we have a worried (for example) parrot on our shoulder.  That parrot can stay there until it is ready to fly away – we don’t feed it but we don’t ignore it either, it just stays with us until it is ready to fly away.  We started out using this to help him, but we use it too now.  We don’t have to be happy all the time, but society makes us think that we do.  The parrots come & go, we talk about them and we acknowledge how they may make us feel – and it has made a big difference to us, but it might not work for everyone.

I really feel that if we are to have a better world, we need to encourage our children to be brave enough to be skware pegs, if that’s where their soul takes them.  They need to be able to break free of the moulds that society tries to put on them, and we need to be brave enough to weather the storm, and then let to them fly!

This isn’t just aimed at Skware Pegs, but at any teens and the people who make it possible for these teens, boys and girls, to play weekend sports, and then they stand on the sidelines supporting, cheering the wins and sympathising with the lows.

Both of our children play sports, and in the winter our washing machine deals with never ending muddy kit, and the house stinks of wet, smelly boots. In the summer we have buckets full of cricket whites trying to change from green back to cream (who on earth decided school cricket should be played in a pale colour!!!). We both juggle work and weekend commitments so that someone is there to watch every match, to chauffeur all over the country, and to cheer on from the sidelines. And that’s where my problem lies.

We, as parents, grandparents, aunts, uncles, family friends, invest so much in our children’s team.  We share every goal, run, try or basket, we celebrate every success and we console all the losses – and it can be a very long drive home when the final score didn’t go our way.  We need to support our children, to cheer them on, to offer advice if it’s needed, but………….I think there needs to be a universal rule that states that only positive things can be shouted from the sidelines, and that you should never, ever shout anything negative to a child, especially one that isn’t yours.  You have no idea why Johnny or Sophie may be off colour today.  You don’t know about the bully at school, about the crying baby at home, about the rows that keep them awake at night, about the illness of a close family member, of the internal battle that child may be having.  Hey, they’re teenagers and are full of hormones, they could just be having a shit day.

Let me give you an example. As regular readers will know, our youngest son was (finally) diagnosed with autism in September. He has been playing at a sports club since he was 7, and although I know many of the parents are aware of his anxieties, I am not sure how many know about his diagnosis (but they should be aware of his social awkwardness). That aside, before we left this morning, he was really stressed.  Year 9 pressures, a losing match yesterday and just being end-of-term-exhausted meant that he really didn’t want to go this morning.  Knowing it was a cup match and the team were short of players, he decided to go, but then ended up playing in a position that he doesn’t usually play in.  He had a good game, didn’t do anything wrong, but in the first half, another parent called him out on mistakes more than once.  The first time I was rattled, but I let it go. The second time I was looking to see who it was, and had there been a third time that I heard, I would have gone and spoken to that person. I was livid. How dare they criticise my child’s play. 1. They aren’t a coach 2. He’s not their child 3. They have no idea how much it took for him to put on his kit and turn up today  4. At the end of the match, all the coaches made a point to go and tell him how well he played, even more so playing in a position he’s not used to.

After the match, my son told me he heard the comments, and he felt annoyed and distracted, so rather than improve his play (which wasn’t necessary), the comments could have made his game worse.

There were also negative comments aimed at the referee (from a different group of parents) and she was unsettled at half time.

People, if your child plays a sport, even if they play at a high level, remember that they are children. They give up an evening in the week and they give up a morning at the weekend to go and run round a pitch. I know you do too, but they are children, their heads are full of learning and sport takes away some of their wonder time. If we make it a chore, if we moan at them, if we criticise them then we take away some of their enjoyment.  It is their time in the limelight, let them enjoy it.  If they’re having a bad day, let them. Unless you are perfect and infallible all the time, let them have their highs and lows without making their lows lower. And finally, this is for fun, it is only a game, and most of them won’t end up being professional footballers, netballers, hockey players, rugby players or cricketers.  They will remember your smiles and support, but they will also remember your words, so make them nice ones. And please, only say supportive positive things to all children, but especially the ones who aren’t with you.

I am an autism mum. I have known that for years, but this morning we went to get the results of an ASD assessment, and it’s official. He has ASD. I am an autism mum.  This is the first time I have written it down, and it feels a bit strange, but there it is.  We have the letter from the hospital. It’s official.

I cried when they told us – tears of relief not sadness. However, it feels strange to be relieved and pleased about a condition that will never go away and will stay with him forever. It feels strange to have fought for this, to have battled for what he knew was there, and for what he wanted.  It feels strange I am pleased that he has a label. I am also pleased that it is up to him who he chooses to tell, and who he chooses not to tell.  We already have a child with ADHD, and he, again, chooses who to tell and not to tell.

Complete honesty warning here –  22 years ago when I was rocking our 4 week old baby who never slept, I would have scoffed at the thought that we would be parents to 2 children with additional needs. Even when our eldest was 5 with the most amazing temper and anger outbursts, it never occurred to me that this was any different to what any other parent was going through.  This was all we had ever known. This was our normal.

Fast forward to when our youngest was born – another baby who never slept, who didn’t like being on his own, who didn’t play like some other toddlers, who hated change – and our wonderful but at times tiring kids were our normal.  It never, ever occurred to me that they had conditions that could be helped.

With the rise of social media, the pressure to have everything photographed and #soblessed means that if I were a new mum now, I would be even less likely to ask for help.  I’ve written before about how my normal will be very different to your normal, and how this is fine.  But I think that if we feel we are struggling with our normal, or if our children are struggling, then we need to ask for help.  We also need to trust our instincts, to listen to professionals, but also make them listen to us.

I am an autism mum. I have two amazing children. Our normal is amazing. We are a fabulous family.

Sometimes when I chat with people about the boys’ and their various quirks, people tell me that they are just like their children, that all children are like that.  This was especially true when they were younger, when we had years of sleep deprivation, or fiddly fingers or other things that are perfectly ‘normal’ (argh, that phrase again), and seems to be true again when they reach the teenage years. At the moment we are dealing with a hatred of most people (all teenagers are anti-social), stress and anxiety with school (yep, seems everyone else does that too), food fads, surliness and lots of other things that most of his peers do too. And I really do understand that their behaviours are completely (here we go again) normal, but it’s the intensity and constant nature of their quirks that cause us, and them, problems.  How can I explain to another parent that the reason why my son has blanked her and her son, who is a friend, is because he’s having a bad day and just doesn’t want to ‘people’? Or that the friend he liked last year did something small and apparently insignificant, but it was the final straw and my son can’t face being friends again this year.  That he doesn’t want to go to their house as he doesn’t like the smell of it as they use different cleaning stuff to us, that if people come to our house, they can’t go into his room as that’s his safe place and only a few of us can enter.

Right now I’m writing this in a waiting room in the children’s department of our local hospital while our youngest has more assessments for ASD.  When we arrived it was noisy – but that’s because it’s a children’s waiting room, and is full of toys and children and their parents.  It’s a fabulous place, much nicer than the waiting rooms we had to visit when our eldest had regular appointments at a different hospital.  There are playing children running round, there is no hospital smell, and, as far as waiting rooms go, this one is great.  Except it isn’t.  It’s too noisy. There are too many people, there is a variety of smells and sights.  There are children everywhere it is a complete sensory overload for a child like mine.  So we waited outside. That was fine, and we chatted and used predictive texts to make up funny sentences. We smiled and laughed. And then he checked his phone, and it was time for his appointment, and they hadn’t appeared. Then someone came outside and lit a cigarette right next to the no smoking sign.  Cue rising stress levels, so we went back inside, and he was called into his appointment.  I’m not involved in this one, so I went into the room with him, and left him ‘masked up’ and stressed. So now I wait.

While I’m waiting, typing this (yes, I’m that strange lady in the corner of a children’s waiting room with rucksack and laptop) I am really struck my how different both my children, but especially our youngest, were to most of the younger children around me.  Our eldest would have made eye contact and spoken to people, or would have been quietly playing on his own.  Our youngest would have been stressed and would have been sitting next to me.  I would have brought a favourite book for him, but he wouldn’t have gone off to play.  He wouldn’t have chatted to other children or initiated play.  He might not have spoken to them if he was spoken to, and he would have spent most of his time on my lap or by my side.

It has been quite shocking and a real eye opener sitting here and reflecting.  No one behaviour is different to any other child’s, and many behaviours are shared by many children, but there is a stark difference.  There is a wall between my child and the others I have seen today, and that is fine, as they are all different, but I have been hit by how close he is to others, and yet so very far away.