Hello Hurricane

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I HATE this time of year. It’s the time where things start to change as the school prepares for the new term in September which I remember only too well from my own school days.

*Twitch*

When it comes to The Boy, there is a pattern. He starts the school year in a state of anxiety and by Easter he begins to settle down. After the last half-term things start to deteriorate as preparations for the new school year begin. This year has been different because he hasn’t really settled at all. He is increasingly unable to do his lessons in the classroom and ‘incidents’ are happening on a daily basis.

The school can’t try any harder than they do to support him. They are always thinking of new things to try and whatever isn’t working they change. It’s just that school life is getting harder and he struggles with having to do things that he doesn’t want to do (demand avoidance) but he has to do certain things or there is no point him being in mainstream and despite his difficulties he’s happy there.

He’s been struggling at home as well and the other week he had the MOTHER of all meltdowns.

A fellow autism mum and good friend used the word ‘hurricane’ and that nailed it perfectly for me. It certainly looked like a hurricane had hit his bedroom.. At one point he was in danger of hurting himself so I intervened whereas I usually allow him to work through the meltdown himself. It was then he started yanking at my hair (which farking hurt) and slapping me. As a parent you take the blows because you understand that your child is out of control due to being overwhelmed and you’d rather they hurt you than themselves. It’s a reaction. It doesn’t make it OK. It just explains it.

As soon as I felt his body relax, I stepped back and allowed him space to calm down.

The storm had passed, for now.

To hear the child you love scream that he hates you and wants to die is hard to take. It’s hard for ANY parent to take. No matter how many times he loses it, it never gets any easier. It’s not you they hate. It’s how loss of control makes them feel.

There was this moment where he declared he was ‘going to die’ and theatrically threw himself face-down on his bed. It the best bit of am-dram I’ve ever seen and at any other time it would have been hilarious but he was hyperventilating and knowing how this works I’m pretty sure that at THAT moment he probably did think he was dying…

He is theatrical in the normal way. He is expressive with a wonderful vocabulary range. If he can learn to get a handle on his anxiety, he will make a good actor one day (and there are lots of great actors on the spectrum) but this wasn’t a performance. It was real. It was him struggling against the tsunami of emotions within him and it was heartbreaking to witness.

This meltdown was a result of preparations starting for the new class. It’s a bigger class size and a new teacher. He was worried about it but didn’t know how to express it in a positive way so it came out in a meltdown. He has since visited the new class and THEY HAVE LEGO, FOLKS so he came out smiling.  An added bonus is that one of his teachers from this year is also going to be teaching in the new class along with the new one. So the familiarity of her and his long suffering SST (who hopefully will follow him up through school as long as he needs her) will help to lessen his anxiety. The school are using social stories and the usual strategies to help him with the transition but the real test will be when he goes back in September.

The last few weeks of the summer term are all about change and change is one of the things in life that he doesn’t handle well. Even the nice changes do his head in. However, I have faith in the school that they will do their best for him but most of all I feel sorry for my son who is struggling with the fear of change, just like I did. SODDING GENETICS!

It’s never easy for me to write about my son this way but it’s part of his autism and the meltdowns are part of our life, at least, they are for now. The meltdowns are not who he is. They are a reaction to a world that he struggles to cope with. If his world was constant there would be fewer meltdowns but it isn’t constant. Things change. Sometimes unexpectedly and sometimes planned but changes ALWAYS affect him.

The thought which consoles me the most is that he is not alone like I was. Nobody helped me because nobody ever knew there was a problem. I was the invisible girl when it came to the teachers but not invisible when it came to bullies. I stood out like a belisha beacon to those bastards…

My boy’s autism is IN YOUR FACE visible and the positive thing about that is that it gets him the help he needs.

We’re strapping ourselves for a fight to get him to where he needs to be. My bandana is on. I don’t have Sly Stone’s biceps (or penis) but I’m strong where it counts. My anxiety is sky-high but I’m working on that, like triple-bagging my cups of Chamomile tea and taking time in my day to stare at fluffy clouds and tropical fish.

Breathe, just breathe.

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Got Through Another Meltdown!

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Sons, Sand & Sauvignon

 

 

Guess Who’s Back

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Therapist: ‘I’d like you to imagine your worry is a tree’

Me: ‘Tree? I have a bloody forest in my head, love!

My therapist laughs and so do I but my laugh is manic whereas hers is not.

It’s what it feels like in my head. On my worst days it’s gnarled trees and demons. If my mind was a novel, it would be a Stephen King one.

Fear.

I’ve known Fear for as long as I can remember. It’s always been with me. The bastard was there when I was born, watching and waiting for the moment when it could scare the crap out of me.

I don’t know what it’s like to live without anxiety. I’ve had panic attacks since I was a little girl. One minute I’d be fine, the next my stomach would lurch and I’d feel sick. Sometimes I would be sick. It would often happen after I’d seen something unpleasant on TV. My chest would feel tight and the room would spin. I remember feeling this way whenever Panorama came on. To this day, I can’t watch it.

Two years ago I had my first nocturnal panic attack.

I woke up in the early hours utterly convinced I was having a heart attack. It became the norm to wake up with my heart pounding. Things reached a crisis point in February when my heart started beating erratically at about 5am one morning. It wouldn’t slow down despite triple-bagging my Chamomile tea and deep breathing. I ended up in Accident and Emergency and once again I was convinced that Death was coming for me…

He wasn’t. Obviously. Or I wouldn’t be typing this.

It was a severe panic attack. I was given a beta blocker and sent on my way.

That day my anxiety went orbital. I genuinely thought I was losing my mind. The drugs made me so ill that I lost half a stone in two weeks. I chose to come off the medication and CBT became my only hope.

CBT has been helpful because it’s all about changing your thoughts. Medication is great (when it works) but it only deals with the symptoms, not the cause. CBT has given me some useful distraction techniques aside the old worry tree.

Two weeks ago I noticed the good days were starting to outnumber the bad and I was controlling the panic more. I wasn’t waking up with my heart going nuts every day and dared to think that I’d got this thing beaten.

‘I think I’ve turned a corner!’ I proudly told the therapist after giving her my scores for how anxiety is affecting my life.

‘You’re doing really well’, she soothed down the phone.

I told her that I’d taken up ironing again after a 10 year hiatus. I hate ironing with a passion but figured it might help me if I imagined the creases were my fears which were disappearing with each glide of the iron. The therapist was impressed and I think she wrote it down because she went quiet. Either that or she was updating her Twitter..

Got a right one here #loon #needacareerchange

This week the symptoms have been creeping back in. I’m back to the 4am waking up with my heart pounding. This morning it was 4am then again at 5.30 and I know I’m not breathing properly which is why the palpitations are back.

I feel SO disheartened.

However.

I know setbacks happen with anxiety. I know it’s a long way back from where I’ve been. As soul-destroying as it is to relapse, it’s a normal part of the recovery process.

Some days I wish they give me a lobotomy.

I feel too much.

I think too much.

There is just too much mind-traffic.

The Boy and I came up with an analogy which helps him describe what’s going on in his head as being autistic he struggles to describe how he feels. We say his head is like a motorway and on a good day it’s running smoothly and traffic is flowing. On a bad day it’s congested and people are peeping their horns in frustration. My personal version (for grown ups) includes lots of wanker signs, road rage and multiple collisions. Of course, there are fatalities because my thoughts are catastrophic ones.

It drains you. The happiness goes out of your life as if you have a Dementor circling around your head only you have no wand. But wait, I DO have a wand. It’s in my head. An imaginary one along with the imaginary thoughts that torment my mind. So I whip out my wand and send those thoughts spinning into oblivion.

EXPECTO PATRONUM, MOTHERF*CKERS!

Obviously, Harry Potter didn’t call them motherf*ckers but I bet you anything he was thinking it…

I hold onto the thought that I’ve been here before and things have got better.

I hold onto that thought tightly when Fear threatens to overwhelm me.

I know that worrying about symptoms and constantly body scanning triggers panic attacks so I try to acknowledge the sensations but refuse to take it to the next level because that’s where the shit happens. That’s what Fear wants me to do because then it can control me and I’ve had enough of it controlling me.

I will no longer run from it.

I will look it in the eyes, smile and say.

‘Hello, Fear, you bastard.’

‘I’ve been waiting for you.’

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”~ Frank Herbert – Dune

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Papa Tont

 

Gravity is a Bitch

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There are two things about mid-life that I don’t like. One is the menopause (which in my case has been a bit shit) and the other is the fact that everything and I mean EVERYTHING starts to head south.

I started off with youthful skin (once the zits had cleared up) and everything was nice and firm. I had no wrinkles, no sagging and no unsightly jowls. Speaking of which.. sagging jowls used to be an ageing thing but these days younger women are developing the unsightly bastards due to spending hours on end hunched over their mobile phones.

Did you just straighten up?

Now I am menopausal. POST menopausal, if you please, because my ovaries threw in the towel when I was 39. I had The Boy at 38 and my body never recovered. It wasn’t supposed to happen for another ten years but Mother Nature obviously considered three offspring of mine more than enough for any planet.

Fair nuff.

My face is ‘lived in’ like a comfy old sweater or a well worn pair of slippers. My skin is like an old handbag unless I spend three hours a day slavering cream on it. I have wrinkles around my eyes, a second chin (three depending on camera angle) and the beginnings of a moustache which I keep on top of using a pair of tweezers.

It’s the face of a woman who sprays her hair with pit spray and her pits with hairspray.

It’s the face of a woman who frequently walks into a room and stands there looking vacant while she struggles to remember what she went in for. Ten minutes later she gives up and trundles off to do something else, like vacuum the lawn. At 3am the next morning the poor sleep-deprived lunatic finally remembers what it was she went in there for. Trust me ladies, you have all this to look forward to.

This is going to happen..

The menopause has robbed me of my marbles, not that I had many to start with. I’m forgetful and confuse things like when I referred to Midsomer Murder’s John Nettles as ‘Jim Nettles’. I’ve become that lady who once confused a pop song with a soap opera and came up with Betty Turpin’s Eyes. True story.

I stand there whacking my hand against my forehead in an attempt to dislodge the information but it never comes and, ‘No. It’s gone’ has become my catchphrase. In fact, I’ll have that on my gravestone.

The biggest change though is my body.

I know it’s my body because my head is attached to it but I feel like Austin Powers every time I look at myself.

“Honestly, That’s not mine!“.

The thing is that it can be quite a shock when you really look at yourself. You notice the wibbly bits, the nipples that point south and a backside that’s considerably lower than you thought it was despite the fact that your knickers have become considerably larger in order to accommodate it. I think it’s been more of a shock to me because it hasn’t been a gradual decline. It was only seven years ago when I was toned (ish) and had a fully functioning pelvic floor.

Then I had The Boy and my ovaries threw in the towel.

However, I do love my c-section scar. I love that line because of what it represents. It’s an awesome line. Also, surprisingly neat. So well done those NHS peeps who opened me up and stitched me back together. Nice job!

I am starting to accept that my body has changed beyond recognition and even if I was to embark on a keep-fit regime that Rocky Balboa standards – I’m never going to be the same because I’m minus the necessary hormones.

Hormones…

Those special little chemical messengers that keep body and mind running smoothly.

A word of warning to husbands/partners

You know that week out of every month where you daren’t open your gob? The tears? The tantrums? The plate hurling? The ‘ I’M LEAVING YOU!! BASTAAARD!!’ when you’ve called her ‘cuddly’?

Yes?

This is nothing compared to the menopause.

Build yourself a bloody big shed and be prepared to spend a lot of time in it. Get some electric in there and make it so that you’re self sufficient when she’s having one of her ‘do’s’. My dad rekindled his love of carpentry during Mum’s menopausal years. Luckily for him, he had a garage to retreat to when the going got tough. So you see, this uncertain time can be used to your advantage. Hormones can mean the difference between digging the garden with a spade and being buried with it so heed my advice and you might just survive with your testicles intacto.

Things settle down eventually (maybe never ha ha) but you will occasionally find the Missus passed out over a pile of old photographs taken of her when she still had youth on her side (and collagen) but this generally happens on birthdays. You must tread carefully here my dears… back away and pretend you’ve seen NOTHING. Go to your shed and lock the door..

As crappy as the menopause can be, the alternative is not living long enough to experience any of it and when I look at it that way, I consider myself fortunate. I aim to embrace mid-life and menopause with a liberal helping of humour as well as the occasional strop. OK, LOTS of strops!

Thanks for your time my dears and may your own decent into menopause be slow and graceful.

Got bags under your eyes, bigger hips and bigger thighs
You got places that you can’t even itch
You can nip it, tuck it, squeeze it
But you’re never gonna beat it
‘Cause gravity’s a bitch

~ Lambert, Miranda/Wray Scotty

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My A to Z of Teenage Boys

It’s midnight. A new day has begun. Only this isn’t any ordinary day. This is the day your son turns into a TEENAGER and so the metamorphosis begins..

Within the next few hours he will lose the power of speech and most likely the use of his arms and legs. However, he will retain the ability to eat, sleep and game. The next few years will test your sanity to its LIMIT so strap yourselves in for a bumpy ride but take comfort in the thought that one day he may have teenagers of his own..

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Ablutophobia

The fear of washing and bathing. Note, this fear miraculously disappears when girls are no longer considered repulsive.

Brains

The teenage brain isn’t developed fully – especially the part that deals with consequence which is why they act like morons occasionally. It’s biological.

Crazy

Is what you’ll be by the time they’re 18.

Tip: Alcohol helps.

Deodorant

Often used in lieu of a bath.

Embarrassment

Once you were the center of his world then puberty called and now you are an utter embarrassment to him. Isn’t it time you were in a home, you geriatric old sod?

Food

Teenage boys are bottomless pits when it comes to food consumption. They will eat you out of house and home and still complain you’re starving them to death. Good news! When they invite you to their house (Christmas 2053) to sit on a crappy old deckchair with more cobwebs on it than your reproductive bits, you can get your revenge by wolfing down their Quality Street, drinking all their booze and anesthetizing them with your sprout-fueled farts. Karma, no?

Grunt

The power of speech is temporarily lost at the onset of puberty and replaced with grunts. Texting by way of communication is an option but expect to receive one word answers to your 5000 word epic. Forget ‘kisses’. Those days are gone for the foreseeable, if not forever. However, you are guaranteed one on your embalmed forehead when you’re laid out in the deceased depot after choking to death on one of your false teeth.

Hormones

The reason your little prince turns into an argumentative sod.

I

I want. I need. I can’t.

The teenager’s world revolves around themselves. It’s biological.

Jurassic

The period they presume you to be from because you are in your thirties or forties.

‘OMG you’re THIRTY? That’s like SO OLD! YOU REPULSE ME! SOMEBODY ADOPT ME?’

Knowledge

Teenagers know EVERYTHING. You can die now.

Life

You give them life and you ruin their life by asking the impossible of them, like putting the bin out.

McDonalds

Popular food of choice and possible first job (not counting paper round) which may or may not lead to a managerial position within the first week.

Nintendo

Or other gaming console. Your teen must be plugged into this machine for at least eight hours a day to maintain their vital signs.

Onesies

An oversized babygro which some teenage boys like to lounge around in while watching programmes about big-breasted vampires.

Pit

Bedroom. Derived from cesspit, as in, an underground hole that stinks. Enter at your own risk, preferably wearing full bio-hazard suit.

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Quiff

A 1950s hairdo that’s seen a bit of a revival. The teenage boy either can’t be arsed faffing around with his barnet OR or he has the entire range of products in Superdrug’s hair section at his disposal and goes out looking like Justin Bieber.

Elvis, Morrissey and my Dad all rocked the quiff, though not necessarily at the same time.

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Mozzer, not AS quiff as it was in the 80s but still a quiff.

Rude

Teenagers tend to go through a manners malfunction stage and like to mutter expletives under their breath which bat-eared mothers NEVER fail to hear. I once told mine to sod off. I was upstairs, she was in the next town. She heard me.

Speed

Even the laziest of teenagers can shift faster than a greyhound out of a trap when threatened with the confiscation of their games console.

Tired

Teenagers can rack up more hours asleep than a sloth if given the chance. It’s biological.

Underwear

The young teenage male will happily wear the same pair of pants for a week month. Parental intervention (nagging) is essential during this phase to maintain their hygiene and your sanity.

Vomit

Teenagers + alcohol = projectile vomit + stolen traffic cones

Why

‘WHY WAS I EVEN BORN!!!!’

A phrase often used by teens when asked to wash up when they are trying to rid the world of zombies.

You: ‘Do the dishes please’

Them: ‘UH?

You: ‘The dishes?’

An hour later….

You: ‘DISHES, NOW!’

Them: ‘OH MY GOD. IN A MIN. OK?’

This goes on until you finally lose it and yank the cable out of the wall. You threaten to throw the games console in the bin. NOW you have their full attention. They scream ‘I HATE YOU! WHY WAS I EVEN BORN?!’ They stamp off upstairs, you go full Basil Fawlty and wrestle the console away from the TV. You launch it into the wheelie bin and then flounce round the shop for some alcohol. You’re that pissed off you haven’t even noticed that you’re still in your slippers! Two pints of wine later, you wash the wretched dishes yourself. Then you retrieve the console out of the bin and as you stand there wiping yesterday’s spag-bog off it, you silently will your ovaries/testicles to expire so you NEVER have to go through this shit again.

X Rated

Starts off with the undies section in your catalogue. Before you know it they’re going blind staring at heaving bosoms on the internet. Once the bed-sheets begin self-starching you know your little prince is gone forever. Weep for innocence lost then dry your eyes and get them to strip their own beds. *shudders*

Yob

Boy spelt backwards. Uncultured arse-biscuit who hangs around outside Co-ops laughing at pensioners and trying to impress girls with weird eyebrows. This is the type of teen who goes on Jeremy Kyle for a paternity test and a free bargain bucket meal. If your son ever turns up with one of these creatures in tow (or, worse, becomes one) write him out of the will and rent out his room.

Zits

Sods Law (or Karma) says that teenage lads will suffer an outbreak of pus-ridden zits when they least want them, like on a date with Courtney (who drops the u and the y and adds an e) from up the road and that’s not all she drops if you get my drift? One word, people.

Sabotage.

‘What’s that sweetie? You’ve run out of Clearasil and Lynx?’

‘Oh my God! How did that happen?’

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You know it makes sense.

This ‘ere A to Z is based on my own experiences as a mother, sister and observer with poetic license thrown in. Obviously, not all teenage boys are into girls, gaming or vampires but that’s another post, eh Bro?

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Image Via Creative Commons By H. J. Hickman

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Testing Testing

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Last week The Boy took his SATs. For those who don’t know what they are – SATs stands for Standard Assessment Tests.

SATs are taken in year 2, 6 and 9. They are not about passing or failing. The purpose of these tests is to see what level your child is working to in comparison to those born in the same month. They are controversial for this age group. However, this post isn’t about how I feel about the tests but about how The Boy coped with them.

The tests were discussed at our last review meeting. The Boy doesn’t cope well under pressure so we needed to know how they planned to meet his needs during this stressful time. I was more worried about how he would cope more than the tests themselves because as well as being autistic, he’s one of the youngest in his year.

Although the SATs for The Boy’s age group are informal with no strict time limit, the school understood that he would require longer than the other children – especially when it came to writing. Because he gets overwhelmed when faced with lots of questions at once, they broke his down into a small chunks then let him have a break. Also, as he is still using the palm grasp and as writing is a challenge, he was allowed a scribe. So with the knowledge that they had covered his problem areas, I could relax as much as an autism parent can ever relax.

My job was to keep him as calm as possible during the week with lots of cuddles and reassurance. I was extra careful of which battles I picked because I needed him to start the day as relaxed as possible. So if his Lego was left all over the floor, I left it there because the biggest and most important thing for him was to keep his anxiety at a minimum.

The tests are a big deal for most children but for an autistic child they can be incredibly overwhelming but the school couldn’t have done anymore for him than they did and once again it proves that we chose the right school for our son.

The thing about The Boy is that he is academic. He excels in maths whereas I failed miserably to grasp the concept of basic multiplication, let alone mind boggling stuff like algebra or logarithms. I was (and still am) creative whereas he struggles to hold a pencil properly which makes writing and drawing an issue. He hates writing and the main reason is because it physically hurts him. Another reason is that his mind works a lot faster than he can physically write the words down, so he gets frustrated and ends up in tears or in meltdown. The school encourage him to write whenever possible but they understand that there will be times when it will be futile to push him and then they allow him to do his work on the computer. As they say, it’s the work that is important more than whether it’s written or typed.

The Boy has a photographic memory, as do I. This should stand him in good stead for exams but I wonder if, like me, it will be the case that the understanding isn’t always there? For example, he was able to recite his entire 12 times table at the age of four. Not many children can do that but while some people thought they had a child genius on their hands, I had an inkling that it was simply down to his ability to recall information, especially about stuff that interests him. Having said that he is now showing that he can work things out as well. He loves maths (the weirdo) it calms him, whereas it had the opposite effect on me. I ABSOLUTELY HATED it!! Also, I was crap at it – which didn’t help.

I know he’ll do well in history because he’s fascinated by it, just as I was. He’s just done a topic on the ancient Egyptians at school and he really got into it so I bought him the Horrible Histories book – Awful Egyptians. Incidentally, he loves the Horrible Histories programme, especially the talking rat, Rattus Rattus. I like Stupid Deaths. It’s funny because it’s true. Woo!

The week ended with one final test and then the children were allowed to watch DVDs and play with a huge box of Lego that the teacher had brought in. Being a massive Lego fan, this pleased The Boy and kept him focused throughout the last test. Every child received a ‘Star of the Day’ award and The Boy received the Head Teachers Award for his effort during the week. His teacher also sent a note home to say how proud she was of him and how he had exceeded her expectations. My boy showed off his stickers with pride.

I’m enormously proud of him because it was a challenging week and he got through it, with support of course, but he got through it without any major problems. The interesting thing is that he is developing an understanding of his condition and he is getting good at recognising when he is becoming overwhelmed and what the consequences can be. For instance, Year 6 were being visited by some owls and The Boy LOVES owls so he and the rest of his class were told they could go and see the owls if they were good. My amazing son made the decision NOT to go outside at playtime because he knows that’s where most of the ‘bad stuff’ happens so he didn’t want to risk not seeing his beloved owls. Impressive eh?

Part of my job as his mum is to guide him towards an independent life and this week has given me more hope than ever that this can be possible. He’s clever and just as his brothers are able to do what makes them happy, I want him to be able to do the same. There comes a day in every mothers life where she realises she’s no longer needed. I’ve been through it twice and it’s bittersweet, believe me. There is relief that you’ve done your job well and they’re independent of you but your heart breaks for the same reason. They’re your babies and they’ll always be your babies and they’ll always love you but they no longer need you – at least not in the practical sense.

More than anything in the world, I want to go through that again. I want to see him go out into the world and and live his life. Apart from teaching him how to do the practical stuff, I teach him how to understand himself and I do believe it’s starting to pay off, bless him.

Thanks for reading.

Sons, Sand & Sauvignon

 

Pink Pear Bear

 

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A Difficult Week

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One of the Boy’s biggest problem areas at school is playtime. This isn’t surprising as the playground is crowded and noisy – not to mention the unpredictability of unstructured play which autistic children struggle to cope with. He is a sociable child, it’s just that he struggles with the social rules that govern our society especially those which are unwritten.

Last Thursday we learned he’d had a ‘tricky’ afternoon. He’d been throwing stuff and pushing tables over in the classroom. There was no obvious reason for his behaviour, as is often the case. As usual I worried because this kind of behaviour tells me something is wrong. There’s always a reason for challenging behaviour so we tried to talk to The Boy about what had upset him but within seconds he started screeching like an owl so knew we left it. However, the following day we had our answer…

The Boy has been friends with a boy in his class and for the last few months it’s been ALL about this child. However, we were informed last week that the child’s parents had been into school to make a complaint against our son. They said their son had gone home saying that The Boy had hurt him at playtime. What their son didn’t tell them was that he (along with another child) provoked a reaction from The Boy by deliberately and repeatedly poking him. The reason The Boy had a meltdown in the classroom was because he was responding to what had happened on the yard. Unable to verbalize how he felt, he reacted in the only way he knows how and that’s to lash out.

All complaints are taken seriously by the school and an investigation took place. Witnesses said The Boy had been provoked and reacted to it.

I managed a small conversation with The Boy and he simply said his friend had ‘kicked him out of his group’ and told him he didn’t want to be his friend anymore.

My heart sank as all parent’s hearts sink when their child is ostracized in this manner.

Children fall in and out of friendships and there is nothing unusual about that but it’s no secret that The Boy has autism and there’s always a niggle of doubt about parents not wanting their children to have a friendship with him. This isn’t me being neurotic. The ‘niggles’ aren’t unfounded as it’s already happened with a parent who stopped talking to me as soon as I told her The Boy had been diagnosed with autism. The next day she looked straight through me as if I wasn’t there and after a few days of the same treatment it finally dawned on me why she was blanking me. It was the autism.

Is that what’s happened here? I don’t know. I do accept that I am overly sensitive at the best of times but, in my mind, most boys of this age will have scuffles on the playground and several times a week at that. Whatever The Boy did on the yard wasn’t considered serious enough for parents to be informed as is the policy when one child significantly hurts another yet these parents felt it necessary to complain so, yes, I can’t help but wonder why.

My son doesn’t instigate. He’s not vindictive nor a bully but he does react when provoked and I don’t blame him. All I can do is try and encourage him to walk away next time but as any autism parent knows, this is an impossible ask.

The loss of this friendship was a big deal for him but it explains the recent decline in his behaviour at school and at home. Had it not been for the child’s parents going in to complain we may still be wondering what the problem is so, in that respect, they did us a favour though I can’t help but wonder how it felt for them to learn that their son wasn’t the victim at all. That, actually, he was the instigator.

Children of this age normally drift in and out of friendships. Most parents will have experienced the ‘friends one minute and falling out the next’ only to be the best of friends again a few day later but from experience, I know that some autistic children are unable to forgive as easily as a neurotypical child and incidents are rarely forgotten. They remain in their memories for the rest of their lives.

Friendship is a difficult area for autistic people. Some make friends easily but struggle to maintain friendships. Others struggle to make friends in the first place. The Boy makes friends easily enough but there does seem to be difficulty in maintaining those friendships. Some children are unable to deal with his mood swings and steer clear of him. Sometimes he drifts in and out of friendships mostly because a child isn’t willing to play games on his terms, as is common in autism.

Those children who understand his autism (thanks to understanding parents) take it in their stride. They know he has meltdowns and why he has them and they don’t make a massive deal about it. They focus on the part of him that makes them want to be his friend in the first place. Those are the friends he needs.

We’re all social beings – even us misfits – and that’s why you’ll find us lurking on the internet where we can feel that we belong because people speak our language. Even I, Mrs Misfit of Misfitington, have a deep seated need to fit into this world in some meaningful way. It’s primeval instinct, after all.

All I want is for my son to feel that he belongs here because we all belong here. God willing, there will always be a special friend who will watch his back as well as their own.

“Piglet sidled up to Pooh from behind.
“Pooh!” he whispered.
“Yes, Piglet?”
“Nothing,” said Piglet, taking Pooh’s paw. “I just wanted to be sure of you.”~ A.A Milne

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Sons, Sand & Sauvignon

 

Copycat Crisis

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It’s been a difficult time at school for The Boy but then the first weeks back after the holidays always are aren’t they? At home he’s been a complete git. Much stroppier than any teenager I’ve ever known, myself included and he’s only six and three quarters!

On Saturday he went back to the children’s disability centre after a three week break. He loves going as he is able to interact with other autistic children, one boy in particular who he has taken a shine to. Unfortunately this boy is much older than him and is starting the teenage group in a few weeks. Whether The Boy picked up on this or it was just an extension of his struggles throughout the week, we don’t know but we were told he had a major meltdown in the park and had to be restrained by two of the carers because he was in danger of ‘bolting’.

Getting to the bottom of meltdowns can be difficult and sometimes we never understand what the trigger is. All we know is that he started hitting out and shouting that he ‘hated girls’. Then he tried to ninja kick the female carers who were having to restrain him. Thankfully there was a male carer who was able to calm him down. Apparently he was new so it was in at the deep end for him, poor sod.

The hitting out obviously isn’t new but I have no idea where this ‘hating girls’ has come from. Boys at school? TV? I don’t think this isn’t something that The Boy has come up with himself. It’s most likely something he’s seen or heard. It’s no surprise that boys of his age are starting to see girls as being, er, annoying so maybe he’s heard a boy casually say, ‘I hate girls’ on the yard but The Boy is literal and looking at it this way it’s easy to see how he could have interpreted it differently from his peers.

The thing about The Boy is that he mimics. If he hears words or phrases he likes the sound of he will repeat them whenever possible no matter how inappropriate they are to the situation. We have to be extra careful what we say around him but we’re human and occasionally slip up like when OH forgot himself and said ‘Bloody’ and The Boy repeated this at school. SHAMING!!

When it comes to TV, he’s nuts about Ninjago and anybody who’s ever had the pleasure of watching it will know that it centers around six teenage Ninjas – Kai, Jay, Cole, Lloyd, Zane and Nya. It’s a good versus evil with hormones thrown in. It’s normal for boys his age to be into stuff like this, right? Eldest boy was into The Teenage Mutant Turtles back in the 90’s while I had a secret crush on Shredder.

What? You’ve never had a crush on an animated character?

Er, moving on then…

The problem is when the child struggles to separate fantasy from reality…

My son thinks he is one of these characters. He talks like them. Raises an eyebrow like them. Stands with his arms folded like them, even on school photographs. He chooses the colour of his pants based on which Ninja he wants to be that day!

Worryingly he demonstrates his ‘ninja moves’ at school and recently this ended in him being carried out of the playground for time-out in the library. As a result Ninjago is banned before school. I only allow him to watch CBeebies in the morning. Yes, I’ve gone from one extreme to another but shows like Teletubbies and The Clangers have a relaxing effect on him. More importantly, Clangers and Tubbies aren’t on the receiving end of a ninja kick.. not that I’ve seen anyway.

The Boy was diagnosed with ASD as Aspergers no longer seems to be a stand alone diagnosis but he fits with Aspergers and many ‘Aspies’ are known to mimic, especially girls.

I mimicked as a child and teenager. In fact, a big percentage of my life has been to copy in order to fit in. It was a subconscious thing as a child but once I had an understanding that I was different, it became a coping skill in order to ‘fit in’ not that I ever really managed to. It’s only in recent years that I have allowed myself to be me because trying to fit into a society that you don’t understand is exhausting and thanks to my hormone malfunction (menopause) I no longer have the patience nor the inclination to be someone I’m not.

Me and The Boy differ in that sense that I never physically acted out in school at his age. At school I barely spoke and when I did the words wouldn’t come out right which only served to earn me the wrong kind of attention so I avoided it whenever possible which meant that things stayed in my head until I got home where I would ‘act’ it all out. Mum would testify to this if she was alive today as she was forever telling me off for shouting. This is one of the reasons she couldn’t understand the words ‘quiet’ or ‘shy’ on my school reports. It never occurred to me to tell her about what was happening at school but if she’d have listened at my bedroom door she might have realised that my play wasn’t imaginative but a word perfect reenactment of my day. The Boy is extroverted and acts out publically which creates problems especially as he’s fond of slapstick and all things ninja and so we have a big problem.

The ‘girl’ thing is being addressed at home and school and I’m confident it’s a blip. When it comes to Ninjago, it isn’t only restricted to the TV. He has comics, books, Lego and electronic games. His life is Ninjago and owls and any autism parent will understand about an autistic child’s obsessions.

This will be no easy task.

No matter what we do here at home, his male peers are mostly into the ‘good versus evil’ on the playground and though I have many skills as a mother, omnipresence isn’t one of them so I’ll have to leave that one to the school and concentrate on things at home.

Any ideas would be appreciated.

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Sons, Sand & Sauvignon

Send In The Clowns

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I was an anxious child and constantly imagined I was dying of something horrible. One day I noticed lumps on my wrists so I worried myself sick thinking of all the terrible things it could be when in reality they were my perfectly normal wrist bones. I wasn’t dying but I was suffering from anxiety and unfortunately the anxious child grew up to be an anxious adult.

You see, I’m a worrier. Glass half-full? How about glass smashed to smithereens all over the floor and shards sticking out of my size fours?

Anxiety in some degree is a constant but every now and then Blind Fear shows up doing a Slim Shady singing, “Guess who’s back, back again Fear is back, tell a friend”. At this point my body is screaming, ‘ENOUGH WITH THE WORRYING ABOUT STUFF YOU CAN’T CHANGE, YOU TIT!’

So Fear showed up about six weeks ago..

The signs had been there for a while. I was unable to complete the simplest task, struggled to read a sentence (let alone a book) and I’d lie in bed for hours with irrational thoughts zipping around in my mind. Not to mention that EVERYTHING (and everybody) irritated me.

I ignored it all.

In the last 7 years I have had to cope with a divorce, moving house (3 times) The Boy’s abrupt entry into the world and my mother’s abrupt departure from it, The Boy’s autism diagnosis and getting married. Oh, and the menopause. Stressful, no?

Things came to a head when I woke up one morning at 5am with a racing heart that refused to calm down. I’d been having occasional panic attacks for two years and I’d always been able to calm myself down but not this time.

This time it was different.

This time there was something wrong and I was terrified.

I woke OH up and begged him to phone an ambulance. At first he refused because he was used to me having panic attacks but quickly relented after I bellowed, ‘PHONE AN EFFING AMBULANCE!!!’ in his face.

Within twenty minutes the paramedics came and stuck things all over my chest.

‘Am I having a heart attack?’ I asked, my eyeballs bulging with fear..

“Doesn’t look like it. It’s just that your heart’s beating very fast and it’s jumping a bit so we’ll take you in to get checked out”

‘Jumping a bit’? It felt like I’d got sodding Diversity in there!

So I lay in the ambulance hoping for some comforting banter from the paramedic but he kept yawning and looking at his watch (you don’t get that in Casualty, folks) so I tortured myself with a bit of hardcore hypochondria instead which worked an absolute treat in keeping my heart rate through the roof.

To keep the story within an acceptable word count, my ECG’s and bloods were fine so after four hours of hyperventilating while listening to some poor sod making noises akin to a distressed Yak, I was given a beta blocker and told it was psychological.

“Not dying then?”

“Not today”.

At this point I’d calmed down. Death wasn’t pointing his bony finger at me so I was able to relax and then came the realisation that I was wearing my skanky dressing gown and reindeer slippers. Oops!

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Slippers of shame.

My dressing gown hadn’t seen the inside of the washer for about three weeks and it had various stains on the front.. mostly tea but one was curry. The Boy had attached a ‘Good Work’ sticker to me at some point so I covered the yellow stain with that TOTALLY forgetting that the doctor had already seen it along with my cactus-legs and scary no-make-up face.

THE SHAME!

You don’t care what you look like when you’re convinced you’re about to shuffle off your mortal coil, at least that is my excuse. *cringe*

The next two weeks were a blur of particularly nasty side-effects from the beta-blockers and then anti-depressants of which I managed ONE before telling my GP where to shove the rest. The drugs don’t work, they just make everything worse – some bloke from Wigan once wrote.

The drugs made me feel as sick as a dog and one day the sight of one of Mary Berry’s recipes actually triggered a panic attack. So I chose to come off medication and address my stress levels. That’s not to say that medication doesn’t work at all because it does work for many people. Alas, not me.

In those first weeks I existed from one hour to the next. The nervously knackered tend to think in minutes and hours as opposed to days and weeks. I became obsessed with my symptoms. My heart raced and there were moments where I genuinely felt I was losing my remaining marbles and would be carted off in a snug fitting jacket but I kept telling myself that they were just sensations caused by adrenalin. There were rare moments where I felt ‘normal’ and that in itself would trigger a panic attack!

In my lowest moments, I miserably thought I was broken and would never know normality again, or at least normality as I know it. Fear really messed me up this time!

I know about anxiety (am bit of an expert) and I understand that the worse thing you can do is lie on the sofa every day. Daytime TV is shit for one and I knew I was heading for trouble when I caught myself watching Jeremy Kyle’s (non) Emergency Room. So I pushed myself to work with the panic attacks by doing housework or walking the dog in order to burn off some of the adrenalin. I felt abysmal but knew that I would feel slightly better afterwards and slightly was better than nothing. At night I’d wake up with my heart racing but I’d breathe it out. If sleep still eluded me, I’d get up and clean something.

I’ve also removed all the news apps from my devices. It’s not that I don’t care what’s going on in the world, it’s just that my mind can’t take anymore grim faced drama. Recovery lies in understanding how a tired mind can affect the body. My body is working as it should. It’s reacting normally to me bombarding it with adrenaline with my negative thinking.

My recovery also lies in humour.

Gone are the police dramas and murder mysteries, for now at least. Happy Valley (a misnomer if ever there was one) remains unconcluded in my Skybox and I’ve turned to comedy to give my body the endorphins that come from having a good old belly laugh.

It’s therapy.

Optreden Rolling Stones in het Feijenoordstadion, Rotterdam; Mick Jagger , kop *2 juni 1982

Fear doesn’t like humour because laughter chases it away, if only briefly.

I imagine my fear to be Mick Jagger and when my heart starts racing I visualise him doing his ‘rooster strut’ and can’t help but smile. The effect is instantaneous and it takes the edge off my fear. Similarly in Harry Potter where the children take what terrifies them with scary bastard Bogart and make it funny. I think there’s a lot to be said for sending in the clowns when it comes to mental health. However, it’s not lost on me that many of the clowns themselves suffer from anxiety and depression.

It’s taken years to bring me to this point and there isn’t a quick fix, especially without medication but hopefully CBT will succeed where drugs have failed. I realise that my negative thinking has got me into this state so changing how I think should help to get me out of it.

Or maybe a lobotomy.

Worrying doesn’t take away tomorrows troubles, it takes away today’s peace.

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mumturnedmom

 

Autism – Life After Diagnosis

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The BBC is currently running a series called The A Word which is based around a little boy who has autism and his family’s struggle to come to terms with it. So far, his mother has struggled to come to terms with the diagnosis and while I can understand why some parents might feel like that – it wasn’t my experience..

Autism was suggested as a reason for his behaviour when he was 3 years old but prior to that we hadn’t considered it as an option. I knew very little about autism so I researched it and soon realised that he ticked all the boxes. One year later he was diagnosed.

The formal diagnosis came via a phone call. The pediatrician had told us unofficially that our son was autistic but she needed the full report before she could make it official and she was waiting on the speech therapist who hadn’t yet seen him in clinic. A change of plan on the day of his speech therapy appointment threw The Boy into a major meltdown to the point where the therapist was unable to work with him. As distressing as the meltdown was – we were quietly pleased that this would be going in her report. A few days later later the consultant phoned and gave us the official diagnosis of Autism Spectrum Disorder with Sensory Processing Disorder.

How did we feel?

Relief, mainly. We had concerns for the future, but what parent doesn’t? Before that I was more worried about him not receiving the diagnosis or having to wait because that meant he wouldn’t get the full support that he needed.

Having read a lot of blogs from autism parents it’s clear that we’ve been lucky. We’ve had no problems at all in getting an assessment, diagnosis and subsequently the right support. I know that many parents are not so lucky but each of us can only speak of our own experience as we find it.

Why Go For A Diagnosis?

Some people live their entire lives knowing they are autistic but never getting assessed formally. When you look at the figures for the amount of people in the UK who have autism, I would suggest that the actual figure is much higher. For some people, they know and it’s enough.

Early intervention makes a massive difference. The Boy copes in mainstream school with one to one support. Without it life would be very different. When I was a child, Leo Kanner’s narrow opinion of autism still influenced attitudes and my son would have been labelled a troublemaker and most likely expelled.

A diagnosis can:

  • Provide relief to the person and their family.
  • Allow access to services only available with a diagnosis.
  • Give better understanding of how to cope with any problems.
  • Provide access to financial support.

How To Get a Referral

Our journey was different to a lot of families as our son’s nursery manager approached us with the suggestion of autism. The child psychologist observed him at nursery and agreed that he should be assessed whereas most parents start with their GP. The one thing I would urge all parents to do is to document unusual behaviour when it happens and note what was happening prior to it.

If you suspect your child has autism:

  • Make an appointment with your GP. Prepare notes on what you want to say in order to get the most out of your ten minutes. If you feel you require a longer appointment, request one.
  • Keep a diary to log unusual behaviour.
  • Not all GPs understand autism. If you are not satisfied, ask to see another one. Trust your instinct!

Diagnosis and its Effect on the Family

Every parent/family reacts differently to diagnosis. For some it brings a sense of relief, for others they grieve for what they feel they have lost. It’s important to understand that your child is still the child that you’ve always loved. The only difference is now you understand that they have a condition and it’s down to you, with support, to ensure that they reach their potential in order to live their life to the fullest.

Siblings

Caring for an autistic child can be all consuming but you need to make time for your other children. Remember that autism affects the family as a whole.

Looking After Yourself

Caring for an autistic child can be mentally if not physically exhausting. It’s important to take time out for yourself in order to re-charge the batteries. Don’t be afraid to ask for support and accept it when it’s offered.

Talk

The one thing that’s kept me from going completely doolally is being able to talk about how I feel with other autism parents and sympathetic friends. Being able to talk (or type) things out can make all the difference in those low moments that we all experience. I’ve also phoned the NAS helpline a few times and they have been helpful and informative.

The helpline number is 0808 800 4104

Autism doesn’t begin with a diagnosis. It’s been there from the start and it will be there in the end but the right support can make all the difference. The difference in The Boy after three years of support is nothing short of amazing. He is loved and accepted for who he is because he goes to a wonderful school with people who care. More importantly, he is happy.

I gave some thought to potentially burdening him with a label but the benefits of diagnosis outweighed the negatives, especially with him being so young. Hopefully when he comes to leave school in twelve years time- having autism will no longer be an obstacle to employment thanks to programmes like Employable Me which highlighted how valuable an autistic person can be to the workplace when given a chance.

Ours is a relatively positive story but it’s not the case for everyone. There are some children whose autism is so severe that there is little hope of an independent life and that must be absolutely devastating for their parents to cope with. It certainly puts things in perspective for us. Life can be difficult but we know it could be a lot worse..

Life with an autistic child is an emotional roller coaster or at least that’s how I see it. There are highs and lows in every day. Sadness and joy. Hope and despair. Resignation and determination. Courage and fear.

But always there is love.

Sons, Sand & Sauvignon

 

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Crazy Bonkers

 

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“Mummy, I PROMISE not to go crazy bonkers today.”

How my heart melted to hear those words..

The Boy was referring to his meltdowns because he was going on a play-date.

The last play-date was back in November and resulted in me having to carry him out of my friend’s house kicking me and screaming. OH picked us half way home and The Boy proceeded to scream and kick the back of OH’s seat. He fought OH as he carried him across the road and into the house. It wiped him (and us) out for the rest of the day. As meltdowns go – it was one of his worst.

Most autism parents will know what a meltdown is and they will experience challenging behaviour on a daily basis.

What is challenging behaviour?

  • Self-injurious behaviour – any activity where a person inflicts harm or injury on themselves.
  • Physical challenging behaviour – hair pulling, kicking, punching, biting (or in his case, ninja kicks)
  • Pica – eating or mouthing non-edible items like dirt, stones and stuff.
  • Smearing  – people smear can be due to medical or sensory reasons.

The important thing to remember about challenging behaviour is that it has a reason.

Such as:

  • Difficulty in processing information or what I call ‘busy head’.
  • Unstructured time – for instance – at school this would be playtime or free-play in the classroom.
  • Over or under sensitivity to sensory stimuli like noise, light and smells.
  • Changes to routine.
  • Feeling unwell
  • Tiredness
  • Being hungry.

If a child struggles to communicate it leads to frustration, anxiety and anger resulting in a meltdown.

What is a meltdown?

A meltdown (or going crazy bonkers) is a reaction to feeling overwhelmed and any number of reasons (or combination of) can cause it.

Some people make the mistake of thinking it’s a tantrum but there is a massive difference between a child who is having a hissy-fit over not being able to get their own way and one who is out of control due to sensory overload.

A meltdown is the last straw.

What can you do to help your child during a meltdown?

  • Never punish your child for having a meltdown.
  • Speak calmly – never raise your voice or shout.
  • Do not reward your child for calming down after a meltdown as this may lead some children to understand that meltdowns get them what they want.
  • Try and talk to your child about the meltdowns once they are relaxed and receptive.
  • Sometimes it’s necessary to restrain your child but this must only be in situations where they could harm themselves or others. The Boy sometimes likes to be held firmly but other times he can’t stand to be touched. If he is in danger, we have no choice but to restrain him. This is incredibly upsetting as a parent.

Preventing meltdowns

  • Learn to understand when your child is becoming overwhelmed.
  • Distraction can sometimes stop a meltdown it it’s tracks.
  • Establish routines and stick to them. Prepare your child for changes to routine as far in advance as is possible.
  • Pick your battles. Try not to sweat the small stuff as you’ll need your energy for the big ones.
  • A hungry child is a meltdown waiting to happen.
  • Reward positive behaviour – when they get it right in social situations, BIG IT UP!
  • Keeping a behaviour diary can help to identify some of the triggers.
  • Teach your child relaxation techniques.

When The Boy goes ‘crazy bonkers’ he becomes aggressive. Being 4ft 2 and strong he is capable of doing some serious damage. This is the part of his autism which I struggle with and unfortunately it’s his most problematic area.

The Boy isn’t a naturally aggressive child. His default setting is to make people happy so for him to lose control means there is stuff going on in his head that he is unable to process.

How it began

The Boy’s behaviour was noticeably different early on and people put it down to the ‘terrible twos’ but I instinctively knew it was more than that – I just didn’t know what.

One day (aged three) he had an epic meltdown. One minute he was smiling – the next he was yanking out my hair and hitting me in the face. My bewilderment only seemed to spur him on. I understand now that the change in my facial expression must have upset him even more. I needed to put some distance between us so I put him in his room (removing anything that could hurt him) and closed the safety gate. Then I sat on the stairs and listened to his tirade in a state of shock. I had never experienced anything like it. He threw his toys down the stairs then I heard the door slam off it’s hinge. Three years old and he could take a bloody door off?

This doesn’t bode well for his teenage years!

*hysterical laugh* *makes mental note to go open-plan*

At that point I did what instinct told me to and held him. He was shaking with rage but I wrapped my arms and legs around him and rocked him back and forth. Initially he fought me but slowly calmed down. He slept for four hours afterwards which was unusual for him as he only usually manged half an hour but he was exhausted. As he slept I sat and stared at the wall. My mind was in tatters and my heart was heavy. Something definitely wasn’t right and I was scared. At that time I was keeping a journal so it was documented and four years later it’s hard to read.

A few weeks later he started nursery and the manager recognised the autism straight away. With our agreement the child psychologist was brought in to assess him. A year later he was officially diagnosed with ASD and Sensory Processing Disorder.

The rest is history.

To see our child lose it in spectacular fashion is hard to say the least. We’re not talking feet stamping tantrums here – we’re talking total and utter loss of control. It rips my heart out to hear him scream that he hates us but I know at that point he needs our love more than ever.

Our lives revolve around preventing meltdowns but it’s not always possible and the ones which happen in public are a whole different kind of stress because people can be judgmental and unhelpful b**tards.

I have meltdowns but mine are mostly silent. I shut down whereas The Boy explodes. For me it’s like having too may tabs open on the PC and everything locks up. The only way to remedy it is to shut down and re-boot. For him, it’s like the entire thing blows up.

Four years on and the meltdowns still happen but not as often because he is developing coping skills where he can take himself off to his quiet place when he starts to feel overwhelmed. Progress is slow but it’s progress and that can only be a good thing.

He may not be able to promise me he won’t go ‘crazy bonkers’ again but I can promise that we will still love him when he does.

“The kids who need the most love will ask for it in the most unloving of ways”. ~ Unknown

 

 

Sons, Sand & Sauvignon