He’s never been particularly social, our youngest.  I used to encourage (?push?) him to have play dates & friends round for tea when he was younger, and on several occasions I found him hiding from said friends in the bath.  He didn’t mind parties when he was in infants as they were normally at soft play areas, and he could just run around. As they got older, though, and the parties became a little more organised, I used to find invitations screwed up in his blazer, at the bottom of his bag, or they would just disappear.  I thought he wasn’t being invited, when actually he didn’t want to go.

He still isn’t keen on people coming to our house, or on going to other people’s houses. He likes mixing with friends when he wants to, but he likes his own company more.  He has increased his social circle at secondary school but it is still hard for him to let people in, and he has a core 4 or 5 friends who he is happy with.  Because he won’t go to sleep overs, and because he won’t have sleepovers here, I was beginning to worry that he is missing out on opportunities to get more friends and do more ‘normal’ stuff. He doesn’t play online games, so he misses out on interactions there as most of his peers’ parents complain that their kids are never off their XBox/PlayStation or whatever.

Until now, none of this has bothered him, but this evening I have had a glimpse of the frustration that he is having at the moment.  He is on the outside looking in at everyone being social and doing stuff together and I think he wants to want to get a bit closer. There have been a couple of get togethers recently that either he wasn’t invited to, or didn’t ask to go to, and the few words we’ve had on the way home makes me think that he is feeling left out a bit.  I don’t blame his peers for not inviting him at all – there are only so many times people will ask you to go before they almost forget to invite you. I’ve been there, turning down invite after invite because of babysitting issues and then you don’t get invited anymore and other people’s social lives go on without you, but I’m not sure how to help him go from the outside to the inside.

It’s days like these that really highlight how hard it must be for him – so close to being mainstream and ‘normal’, and yet so very far away.

After three weeks off, the holidays have (almost) ended, and for us, school is back tomorrow. This means the pre-return blues started 3 days ago, with a conversation that went something like:

Him: Sigh

Me: What’s the matter?

H: It’s Friday

M: I know

H: No, Mum, it’s that Friday.

M: Yes, I know. I knew what you were talking about.

H: But it’s come so quickly. It’s here already

M: I know, but this is the last term til the long summer holiday

H: Sigh

And that’s pretty much how our weekend has gone, with us trying to pry him from his screen and YouTube videos he loses himself in. I’m not going to have a big discussion about the pros and cons of YouTube and screen time here, but we monitor what he watches, and because of his dyslexia, he can’t lose himself in a book like I did when I was his age. Some of the videos are utter rubbish, some are very informative and educational, pretty much like the books I used to (& still) read.  He feels calm & relaxed when he’s on his own in his bubble, but if he stays there too long, it’s hard for him to rejoin the real world. If we drag him away from the screen and go outside, we need to take him out for long enough that he feels energised and happier, but not quite so long he feels stressed and over-socialed.

Last night was horrendous, he just couldn’t stop his mind whirring, even we we tried to use all the techniques he had learnt in CBT. Today, so far, is going better than I thought.  We have made fudge, I’ve dragged him to the local farm shop & then supermarket to choose lunch & dinner (harder to shrug your shoulders and say ‘I don’t know’ when there’s food in front of you), and he’s walking the dog with me later.  Right now, I can hear him in his room, he’s in his bubble and he’s fine – the problems come when he has to leave that bubble.

In an ideal world, he’s told me he’d like me to home educate him in the summer when there’s no rugby at school, and send him to school for the other two terms – in reality, I think what he’d really like is just to be schooled for two terms!  Joking aside, home schooling is a genuine option for us.  I’ve thought about it long and hard for both of the boys, and I wouldn’t be surprised if that’s maybe where we end up, but he loves sport (well, rugby!), and he isn’t very good at dealing with people.  If he leaves school and doesn’t have to learn how to deal with people now, what happens when he goes to work?

A more important factor in our decision is that he doesn’t want to be home schooled – school is at school, and home is at home, and the two should be separate.  Which means I need to pack the sports kit, find the missing sock, check he has done the homework that was set (although as a parent and a teacher, I believe holidays should be holidays, so we don’t do any extra), and make sure he is as calm and as settled as possible before he goes to bed tonight.  Then I need everything crossed that we get there OK tomorrow, and the day is much better than he is currently catastrophising it might be.

At our youngest’s request we were back the GP yesterday to see if we could have another ASD assessment. He made a list of the things that he feels warrants a referral back to CAMHS, and we did the same. Sometimes the things you live with every day become so normal you don’t realise how abnormal they are until you write them down. It was quite emotional and upsetting to write such a comprehensive list of how his ‘quirks’ affect our day to day lives, and yet compared to so many, we have very few problems.

Don’t get me wrong, as I have typed so many times before, we are blessed with two amazing children and they make our lives so much more fulfilling and fun than anyone could imagine, but they do have additional needs, and as our youngest ventures further into puberty, he is becoming more and more aware of his differences, and this, in turn, adds to his difficulties interacting with some of his peers and coping with the wider world. When we had a deep heart to heart a few weeks ago (when he asked me if I had already booked a GP appointment, but I hadn’t) he told me he wanted a diagnosis so he could tell people he had high functioning autism (HFA) and therefore a superior brain.  I love the fact that that’s the way he sees it, but don’t think the ones who pick on him will necessarily like that comment……

So, we saw the GP, we gave her our lists, I did most of the talking and she agreed that we need to be referred back to CAMHS, without any of the battling or arguing our case I was expecting.  This is exactly what we were wanting, but a part of me wanted her to tell me I was being an over-protective parent & if I did x, y & z he would suddenly become a social animal with no anxieties……that made yesterday a tough day.  For any parent, some days are amazing, most are ok and some are tough, often for no reason.  Some days we think are going to be horrendous are actually easy and fun, and others we think are going to be a breeze aren’t. Yesterday was just tough – no particular reason except we’re back in the CAMHS system, again, and I’m tired at the thought of going through it all, again.

However, a good night’s sleep makes all the difference, and today has been much better – he’s been at a friend’s for most of the day (although is now ready for home), and our amazing older youngling is having a weekend away in Austria. Flashback 5 years and I couldn’t have imagined this, a travelling, confident young adult. He still has wobbles, but he’s a skware peg in a rownd hole world, so the world will continue to make him wobble. As parents of skware pegs, we need to give them confident, solid foundations so that when the world wobbles them they keep standing, and if they fall, they brush themselves down and pick themselves back up.  If that means going back to CAMHS and getting the help they need with the foundations, then I’m ready, let’s go!

 

I think you can pretty much tell how our lives are going by how much I blog – when things are ticking along I don’t tend to feel the need to write furiously as things are coasting. When things are going amazingly well, or when things feel like we’re wading through treacle, I write (although I may try to start writing a weekly blog…..that’s my plan, but that’s been my plan since I started this 3+ years ago).

Anyway, I am writing today so we much be on an up or a down – and I think in some ways it’s both (hence the title).

We’ve had huge steps forward over the last few weeks – an overnight stay at a hotel with school (might not seem much for some, but it’s massive in this family), eloquent emails to teachers explaining how he feels & why he’s stressed, and another excellent report card. However, I feel this works against us in a way (not that I’d want the grades to drop), but his high marks give the impression that his stress and anxiety don’t impact his learning.  I firmly believe that if the stressors were reduced and the anxiety managed better, his grades could be even higher……but then I feel like I’m sounding like a pushy parent, which I really hope I’m not.  For our eldest, he now has a growing PT business and has found his place. He is happy. After his battle with depression at the end of 2017, this is fabulous. He is happy, driven and focused. He has a plan. He has a place. He’s himself.

But then we’ve had conversations this weekend about him being screened/tested for ASD again – and this time the conversations have been driven by him.  He wants to be screened, he wants a diagnosis, he want a label. Let me make this very clear – this is being driven by him, not us, not school, not family or friends.  I asked why, and he said he is feeling more and more different from most people. He has his group of friends, and he’s happy and relaxed with them, but he is becoming more conscious of how different he feels, and he wants a reason for this. He wants to be able to tell people why he is how he is – he also wants to be able to tell people he has high functioning autism and so a superior brain, but I’m not sure that’s going to help him feel more integrated!!!!

He’s also now worrying about rugby trials – new coaches, new team mates, new routines – and right now he’d rather not go than try. This is because there has been a month break between sessions, so he’s had a month to overthink how different it’s going to be, and now doesn’t want to go back.  This is fine with us, and we don’t mind, except the chance to go again won’t come for another year and I really think he’ll be cross with himself if he doesn’t give it a try. But I can’t make him go. We have a few hours to discuss……

Now it’s my turn, a paragraph of self pity & wallowing, but I need to get it out there. I understand that compared to some people we have it incredibly easy. We have two amazing boys, one with ADHD who is now building his own business, and has worked out how to ‘adult’ & adult well, and I am so proud of him, but he still needs reassurance at times, help with exams and, because of his dyslexia, he also needs help with forms and the like. We have another with ASD traits, clinical anxieties and dyslexia but who is clever enough to know that he is different to many, hence his request for a return trip to the GP. He is managing all the things that normally go on in his head, and now he has the added ‘burden’ of teenage hormones and feelings. Life is tough for him at the moment – as it is for many teens. If he had a physical injury we could contact the rugby team and say he was injured.  To say he’s having a bad week with his mental health issues should have the same weight, but if he was injured he could turn up on crutches (which is what was requested, even if they’re injured they should turn up anyway & learn). His mental health issues means that it’s the turning up that’s the issue.  So we do everything we can. We talk, we listen, we juggle work so that at 13 he’s not on his own at all in the holidays. And some days it feels like we’re doing really well, and others it feels like it’s never going to end. That there is no magic wand to make life easier for my boys.

However, enough of this melodramatic waffle, it is a rollercoaster, and just as we feel we are hitting rock bottom, we climb back up again.  It’s the Easter hols, the GP visit has been booked, the sun is shining, and I am going to pry him away from his electronics and take him out into the sunshine, because, despite what teenagers claim, sunshine isn’t bad for them!!

So, we’re now on the forth week of term, and I’ve just had to send my first email to school – think that might be a bit of a record since our youngest hit double figures 3 years ago. But, on the other hand, we’re not even at the end of January, and I’ve had to send another email in.  Whether the glass is half full or half empty, the glass is in my hand, and it’s definitely not full, and that’s not great.

It’s the usual problem. Our youngest is sensitive, hard working and a stickler for the rules.  If you have to be quiet in a lesson, he expects everyone to be quiet.  Teachers deserve respect, at least until they lose it from you by being a@*%s. You are at school to learn, so you behave in lessons & you learn. However, he is 13 in a class with other 13 year olds. Some are very similar to him, others are full of hormones & are pushing boundaries, challenging teachers & making a nuisance of themselves. Neither type of 13 year old is doing anything unexpected, neither type is doing anything particularly wrong, but neither type gets on well with the other.  If our eldest was in the same class as our youngest, they would hate each other and would moan about each other all the time.

At work, we still get the clowns & the jokers, and the ones who get on with work. We get the ones who follow the rules, the ones who make the rules & the ones who don’t give a damn about the rules. We also get the ones who aren’t aware there are any rules, and don’t really do much at all. We also get bullies and gossipers and the ones who stir up trouble at every opportunity. If there are too many of one type in our place of work, we have choices; we can move department, we can choose to ignore them, we can look for another job and leave.

At school, in years 7-11, it’s a weird cocktail of hormones, opinions, forming characters and boundary pushing. I can remember how horrid it could be at my all-girls school, and I can also remember how hard it can be to teach and control these years (and I’ve only really taught years 10+, those early puberty years have avoided me, so far). Even if our youngest changed schools, he would just meet another group of similar characters. If I home schooled (which he is adamant he doesn’t want), we would avoid this, but then when he goes to college or university and then to work, he will have had limited exposure to ‘difficult’ or ‘challenging’ personalities, and will have no idea how to deal with them.

So, right now I have had a lovely email back from the form teacher, agreeing with what I said, and we will have a meeting before half term to discuss strategies. But, to be honest, I am torn.  These kids who are disruptive are no worse than our eldest probably was, and they are behaving exactly as teens & pre-teens should. Our youngest is also behaving exactly as a teen should – he’s being true to himself, and is pushing his own boundaries in his own way.  What is the solution? Is there a way to keep everyone happy as they find their way through the teenage & puberty minefield? And when is enough enough? When does the angst of other’s behaviour become something that needs action? And what if the actions of our son (getting on with his work, doing well in exams, coping with his learning barriers and being quite anti-social at times) are upsetting one of the other students and making their behaviour worse because they have undiagnosed learning barriers or SENs? Or maybe they have issues at home that are bothering them?  Or they are just finding the changes that are going on their bodies too much to deal with, and so they lash out & cause problems to distract them from the real issues.

I have no idea what the answer is, but I know that we have only just entered this teenage storm – and from experience, I think it’s time to batten down the hatches and hold on tight!!

2017 was a tough year for us, in some ways. Our youngest ended up back a CAMHS with clinical anxiety, and our eldest was diagnosed with depression. In other ways, however, we had a very lucky & good year.  Both the boys were able to talk to us about their issues, and they let us help them to get help.

Mental health issues are huge, and in some ways it’s in the media so much (often with negative headlines from some ‘notable’ newspapers, I think you know which ones I mean) that we almost switch off. We read about another celebrity with depression, another headline about ‘happy pills’ (don’t get me started on that one), more statistics about underfunding in different areas of the NHS………and it almost becomes background noise. And this is so very, very wrong.

Let’s this into perspective. Mental health in men & women is getting worse, and the funds to deal with it are getting lower. There are many possible reasons for this, and a lot of it is to do with societal pressures to tick boxes in a society that is increasingly insular and solitary.  It doesn’t necessarily affect men more than women, but it has a greater effect on men, possibly because there is more stigma attached to it, possibly because there is more societal pressure to ‘man up’, ‘big boys don’t cry’ and ‘not to be a girl’ (GRRRR!!!!!). So, here’s a very frightening statistic for you. Male suicide is the biggest killer of men under 50. Bigger than any cancer, road accidents, motor neuron disease and anything else you can think of. Too many men feel that their pain is so great they cannot carry on.

This cannot carry on.

We need to think of mental health and well-being as, well, just part of health and well-being. I am so proud of the way my children are open & honest about their mental health. They talk about it in the same way they might talk about asthma, if they had it. No stigma, no shame, no boasting, just as part of them.

If you think someone needs to talk, start a conversation. If you haven’t heard from someone for a couple of days, call or text. If you need to talk, tell someone – even message me on here if you need to, just start the ball rolling. You are not alone, you matter, you are enough, you are worthy. Please don’t suffer in silence. Please don’t become another statistic.

xx

 

First of all, Happy New Year. I hope you had a good Christmas and New Year, one that was (relatively) meltdown/shutdown/stress-free.

Our Christmas and New Year were good. Our youngest struggles with school, but then struggles with the lack of routine at the start of the holidays, so the first week was a little tense at times, but the habit & routine of lazy mornings and slow days kicked in, and our new routine was set.

Christmas morning, we have family round, a sort of open house, and then everyone goes home at lunchtime leaving us to an afternoon of peace and quiet, but a house full of people can be stressful to anyone, and our youngest sometimes struggles with the thought of all the visitors. This year was OK, and he coped very well.

Between Christmas and New Year we had lots of walks, conversations and family time (as well as much more screen time than normally happens, but hey, it’s Christmas). New Year’s Eve was quiet, and New Year’s Day was a walk in the Peak District followed by a family lunch.  All good.

And then last night, ‘it’ happened. The shutdown and meltdown that I had been anticipating for 2 weeks. Two weeks of low grade, chronic stress had taken its toll. Now everything was over, he could release the stress, he could finally let it all go, and let it all out. Headaches, feeling hot, nausea & vomiting – all the usual suspects were there, and this was a long one, lasting well over 3 hours from start to finish.  This is all part of his coping mechanisms, something we learned in CAMHS over the summer. His stress goes beyond fight or flight, and he freezes, shuts down a little. When the stressor is over, be that an exam, a stressful lesson or two weeks of festivities, all the pent up stress, worry & anxiety comes out as a physical & physiological meltdown. For us, this is our normal. For you, it might be something completely different.

So, now it’s the morning after the night before, and everything is fine again.  All the stress has been released and he’s back to normal, no remnants of the night before at all. I, however, am exhausted! A night on his floor with the storm raging outside did not allow much sleep at all, but that’s fine. I can catch up later. What matters is that the stress storm has passed, the clouds have parted and we have sunshine again.

 

Yesterday was parents’ evening for our younger Skware Peg. As expected, it was all incredibly positive, and he’s doing very well, at least from school’s point of view. There are still too many anxiety triggers, but that’s yet another blog for another day. Flash back 8 or 9 years to our older Skware Peg, and it was possibly better from a socially adept point of view, but not as good academically. And the teachers who all taught him were asking about him and reminiscing with smiles, and sending him their love & best wishes. Does this mean that we can compare? I’m not sure.

Our eldest is the most amazing young adult. He could be the poster boy for ‘I didn’t do that well at school but look at me now….’. He is growing his own business, and he has an ease and a charm that I am very envious of. Our youngest describes him as a really clever Joey from Friends, and that’s quite a good description. He just has an incredible aura that allows him to coach, motivate, train and inspire people. You could be in education for decades and not have that skill. It is innate, and could never be taught or learned.

Our youngest is completely different. He has a quiet charm, if he likes you, and if he doesn’t, he puts on an emotional mask and all you might get is an eye roll or death stare. He, however, is very academic and just ‘gets’ science, maths and humanities. Although writing or typing things down is hard for him, the process of learning is easy. He already knows what GCSEs, A-levels and even what he wants to read at uni, and where he wants to go.  It doesn’t occur to him that his brain won’t take him there.

In some ways the differences between them are the differences between ADHD & ASD. One is out there, doing, socialising (even when he doesn’t like them), wearing his heart on his sleeve, and everyone wants to be his friend. The other is introvert, almost secretive with an exclusive group of friends (with all the other peers being organised as acquaintances, others and mortal enemies – yes, really), and most of them want to be his friend.  Because they live with each other, and see each other’s strengths, weaknesses and daily struggles, the boys are incredibly close.  If they were at school together in the same year, they would hate each other. They are so different, and yet so incredible similar.

So, full circle – can we compare them? Yes, in a way.  We can compare their compassion (both fabulous), kindness (fab again), we can compare how they both work to overcome their barriers (ticked boxes here too), and how hard they are working to achieve their potential (yep, pretty good here as well). But we can’t compare like for like. Our eldest would hate a career in maths or physics, and our youngest would hate a career in coaching and motivation (Talking to people every day? *insert eye roll here*). What we can do is encourage them to look at their strengths, what makes their souls sing, and support them in every way we can to make sure they are amazing human beings who will make the world a better place. And surely, we should be doing this for all of our children, be they skware pegs, round pegs or nonadecagonal prisms (the joys of having a mathematical child!)!

 

Last Wednesday was quite a day in our house. For the second time in 13 months, we have been discharged from CAMHS. This obviously means that after our discharge last October we have to have another referral (in January), which was very hard at the time (details about that here), but now, almost 11 months later, it was the best thing that could have happened.

Luckily, our referral took us back to the same case worker as before, and he listened to our concerns, got our son to do an anxiety test, and was going to talk to colleagues about the possibility of re-testing for ASD. No joy with ASD, but the test showed that he now had clinical anxieties, and so was eligible for CBT on the NHS, but we would have to wait.

We waited for a little while, but no where near as long as I was fearing, and we started the therapy with the most amazing therapist. She got him straight away, explained everything in scientific detail, and barely raised an eyebrow when he talked about neurotypicals annoying him. The CBT made a fantastic improvement (details here) but there were still missing pieces. He was almost as good as he could be, but I wasn’t ready for him to be discharged. Luckily Super Therapist was also trained in EDMR (details here) and so that followed CBT.

It was a little strange, and I thought I would find it much more distressing than I did. Watching his body language throughout was fascinating from a scientific point of view, and I could certainly draw lots of similarities from my training in animal therapies. He found the sessions very tiring, and after the first two he was incredibly clingy and emotional, and although he slept well, he didn’t feel refreshed when he woke up.   After the final session last week, however, he has been better. Maybe a little more tactile than before, but definitely more confident, more assertive and possibly even less tolerant of those he doesn’t like!!

So, on Wednesday we were discharged from CAMHS. Super Therapist and all the wonderful people who work constantly with tight deadlines and even tighter budgets have worked they magic on our youngest, and, for now, we have no more appointments, no more safety net and it is equally exciting and terrifying. He says he feels more himself, and he can feel a big improvement, but he still doesn’t like school (meeting on Wednesday so expect another blog at the end of the week), doesn’t like most people, and still doesn’t like being social – but that’s fine. We know that he will always be an anxious person, a worrier. We know that he will always have ASD traits. What his therapy has done is allowed him to take control of them, rather than him controlling him.

Super Therapist’s final words to us were that we could always get a referral back, if we need to. Hopefully we won’t, but it does feel more like Au Revoir than Good Bye……..