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.

This isn’t for parents of skware peg teens, this is for parents of all teens. Conversations over the last few weeks have made me realise the need for this – we’ve been through it and out the other side with one of our boys, and this would have made our lives a little easier, I think, so I am sharing my wisdom. Please share with parents of teens & pre-teens!

1. All teenagers lie, or, looking at it, they don’t always tell the truth.
2. They don’t necessarily see it as lying, but instead their opinion of their reality.
3. If they do know it’s lying, they probably don’t think of it as wrong, after all, they’re just sparing themselves from being told off, or saving you from knowing the truth!
4. There is a fine line between secrets and privacy, and as a parent you need to make sure they have privacy but not secrets.
5. They know much more about sex than you think they do – and they think about it a lot more too!
6. Same goes for alcohol
7. And drugs
8. Talk to them about sex, porn, consent, saying no, saying yes, alcohol, drugs & anything else you can think of BEFORE it might become an issue.  We had a conversation when both boys were about 12. They thought it was revolting, we felt a little embarrassed but we had the conversation anyway.
9. There should be no taboo subjects.  If they want to ask you about ANYTHING to do with their body, other people’s bodies, kissing, sex, what this means or that means, answer it. Don’t tell them they don’t need to know. If they have asked you, they do need to know.
10. Don’t judge. Their brains are going through re-wiring. They need to take risks, do stupid things, form their own opinions. Question, challenge and give your opinion, but do not judge.
11. See no. 10 for friends & possible girl/boyfriends. They need to make mistakes and learn from them.
12. Listen to the small stuff. It might seem stupid and trivial that he was holding hands with her today, or that s/he couldn’t sit with them at lunch, but to them it’s the big stuff, and if you don’t listen to it now, don’t expect them to talk to you in a year or two when it really is the big stuff.
13. Tell them that you will love them unconditionally whatever they may do. Tell them they can tell you anything. Let them know that if their teenage brain leads them into a dodgy situation, you may be shocked, you may be cross, you may over-react, but you will still love them and you will help them sort out the mess they find themselves in.
14. Put down your phone and talk to them. Watch the films they like. Play the games they like (or at least have an idea of what Fortnight, Pokemon, COD et al are all about). Listen to the music they like, be that Taylor Swift, sweary rap or whatever. Get to know them, and what’s going on in their life.
15. There will be hard times. There will be times when you feel like you have lost them forever. You will weep for the baby you had as you look at this almost adult in front of you who you really don’t know (and possibly don’t like). You will get through them.
16. You will listen to people telling you that you will get through the hard times and you won’t believe them, and then 5 years later you find yourself writing a blog telling other people the same thing, because you really will! Hold onto this thought as it will guide you through the storm
17. They will hate you and even though you love them with all your heart, at times you will hate them too – mostly because you do love them with all your heart.
18. They will smell – either of sweat, body spray or deodorant. I’m not sure which is worse, and sometimes it will be a combination of all three.
19. Tell them that you will always be there for them, even at midnight in the winter when they have had too much to drink and have missed their lift home. Go and pick them up, even if you have music they hate playing very loudly all the way home, and then get up early the next morning and make lots and lots of noise. Pick them up and make sure they are safe.
20. Enjoy the highs, be brave through the lows, and one day you will realise the storm has passed, and you have this amazing adult standing next to you who still makes your heart swell with pride and joy!

Another rollercoaster month of exam prep, exams, business start up, 1 am meltdowns (followed by projectile vomiting), exam results and letters from camhs……

The school our youngest attends & our eldest used to attend has twice yearly exam/assessment weeks (call them what you will, the kids see them as exams). Personally, I think this is a great idea – I went to a primary & then secondary school were twice yearly exams were the norm, and exams have never phased me.  We put no pressure on them at all about results – our eldest failed many exams, and the world still turned, and he is now running two businesses (more on that later), so although I think taking exams is a good idea, I also think they show how much you understand, but also how much you can remember on the day and regurgitate onto a piece of paper. Our youngest, however, puts an inordinate amount of pressure on himself to do well in the subjects he’s good at, so the week and the weekend before exam week we were trying to keep him calm, but still encouraging him to revise.  The night before exam week, he went to bed OK, not overly happy, but ok. I woke up just before 1 am as his sighing woke me up.  I went into his room and he was sat on the edge of his bed fighting back tears as the head ache had started.  I did everything I could to calm him down, but once the head ache is there, it’s normally down hill to the vomiting and then sleep, and it was.  It was 1.75 hours of shutdown/meltdown and then he projectile vomited all over the bathroom floor while I mad crazy promises to stop him sitting the French exam with everyone else, and then he finally settled around 3 am and slept, while I laid on his floor worrying about middle of the night promises I wasn’t sure I could keep.

It has to be said, school were fantastic, and he didn’t have to sit his exam with everyone else, but the week was stressful for us all.  Trouble is, he takes after me, and the results can be as stressful as the exams.  Overall, his marks are fantastic. We had to share his disappointment at being one mark off one grade higher than his target (one mark off, oh no, you must be so fed up!), and share his elation at grades higher than even he had imagined!

However, these high grades ‘despite’ his dyslexia, anxieties & ASD traits make my battle for recognition of his daily trials and tribulations even harder. He has told me this week that ‘I work twice as hard as some of them, but I don’t think the teachers realise that. I am working hard to do the work, to ignore the background noise, to concentrate, to not have meltdowns, to not rush to the nurse’s room. I work hard all the time just to be there, and they don’t realise’. I think he’s right.

The NHS is strapped for cash, I understand and accept that, but there have been serious cuts to mental health provision.  I assume this is part of the reason why CAMHS has said they can’t take us back at the moment. The letter floored me, and sent me into a severe negative spiral – so much so that our eldest phone my husband to say he was really worried about me and thought I was on the verge of a nervous breakdown.  I wasn’t, but I was definitely circling.  We have a plan, though. We have seen the GP who has referred us to children’s outpatients, so we wait again, but we have also found a psychologist who will do private assessments following NHS guidelines, if we can’ get the help we need on the NHS. I do get that if there are limited funds you need to prioritise, but part of the reason he isn’t high risk is because we work so hard to make sure he doesn’t get that bad (and I know this weekend is going to be a tough weekend). We’ve said that he’s like a swan gliding along, seemingly graceful and effortless, but beneath the surface his legs are peddling like mad to make sure he keeps going in the right direction.

Back to riding the rollercoaster, though, and our eldest has proved my wrong by setting up two businesses, one coaching kids and one selling gym clothing (both of which are to fill gaps in the market. If you’re interested you can look here or here). They’re not making much money, yet, but he’s found his niche. 5 years after GCSEs, explosive meltdowns and finally getting an ADHD diagnosis, he has found something that he enjoys, and should make a decent living from. Although the ADHD ‘itch’ might kick in in a couple of years and he will look for something else to do, but I am so proud of his courage in following his dreams and finding something to make his soul sing!

 

 

 

This isn’t a poor me blog – far from it.  I have made choices that were right for my children and for us, and given my time again, I would make the same decisions (more or less, anyway). It’s a blog to explain how it is for us, and how it might be for you too.

It occurred to me a few weeks ago, that I hadn’t had any time in the house, on my own, since our eldest was born almost 22 years ago. In that time I have been with at least one of the them, but never on my own until the beginning of March; 21.5 years with someone in the house with me.  In addition, we have been married for 23 years this year and our last night away, just the two of us, without the kids was 15 years ago, the year before our youngest was born.  I’ve been away without any of them once to a conference for work.  My OH has been away lots & lots but most of that (over 99%) has been for work too.  That’s because we can’t both be away – or at least, I can’t be away.  If I went away when they were younger I would come home to meltdowns and stress (on that one occasion I came back to anger and disappointment from our eldest, who didn’t talk to me for 2 days), so I chose not to go away.

Me being unable to stay away on my own, or being unable to stay somewhere strange with our youngest meant I was unable to go to girls’ nights, and it seems that after you turn something down a few times, people forget to invite you, so you sit at home watching social media posts of people having fun.  I wasn’t jealous at all, I didn’t even feel bothered about not going. I was very bothered, however, about not being invited anymore.  Being a parent of children with additional needs had made me become invisible.

A month ago, our youngest went on a rugby tour, and our oldest and my husband went as coaches.  He managed two nights away from home without a major meltdown, and I managed two nights at home without them (with lots of marking, old episodes of Greys Anatomy and strong coffee). However, my husband was on meltdown watch, and he agrees that it can feel isolating.  They had lots of fun, had the run of the bunk house when everyone was off watching a rugby match, but in the evenings, they spent time just the two of them as being in a crowd was a bit too much, and they weren’t with everyone else, and they were conscious that they weren’t with everyone else.

We don’t go out very much because it’s just easier to have a takeaway and a glass of wine at home.  We don’t book nights away because it’s easier not to have to manage melt downs or spend out time making sure we have phone signal.

It’s not all about our youngest either – we have missed 40th birthday parties, come back early from nights out and cancelled meeting ups because life got in the way of plans. This is what happens when you parent skware pegs – you lead a skware peg life.

The positive, flip side is that this works for us.  We haven’t missed, because we have done other things instead.  We are a happy, close family unit, and our sometimes isolated life works, because we all want it to work.  We don’t need pity, or advice, or suggestions of how to do things differently, because this works.  What we do need is a little bit of understanding, and I am sure there are plenty of parents out there who need the same.  If we keep turning down your offers of nights out, keep asking us.  We need to be invited, even if we can’t say yes.  If you’re planning a really big night out, remember us, and invite us.  It’s not just our children who can feel left out (see here), we can too.   And if you know another family who parent Skware Pegs – invite them too!