Preparing My Autistic Child For Life Without Me

 

I lie awake at nights worrying about many things. Things such as money. Have I put the bins out? Some cow who wronged me in 1985. You know? Life. Plus, a few thoughts that I’m not willing to publicize. *coughs*.

One of my fears is a really BIG one.

It’s the fear that one day I will have to leave my autistic son.

Leave, as in die.

I worry about being dead because I know that I will no longer be able to look out for my son and that puts the shits up me worse than anything in this entire world!

The thing is: I’m middle-aged (*weeps*) and my body is starting to let me down, so, naturally I’m becoming aware of my own mortality. This wouldn’t be as much of a problem if I didn’t have a young son who is dependent on me.

Well, it’s your fault for having him late then!

WHOA THERE! I was 38 when I had my son and lots of women give birth well into their 40s nowadays. Plus, I was relatively fit and healthy. Quite simply. I gave birth and my ovaries threw in the towel and it’s pretty much been downhill ever since..

I have two other wonderful sons, but they are grown up and living their lives. I worry about them, of course I do. Most mothers never stop worrying about their children, right? However, they are independent and stopped needing me a long time ago. My job is done. They can change my big girl nappies when I start soiling myself, right boys?

The Boy is different because he’s autistic and here’s where the problem lies – not because he is autistic – but because I am also autistic and I know how hard it is to live in a world that doesn’t understand you.. While I am alive (and compos mentos mentis) I’m here to fight his corner and I have already had a one person cautioned by the police for intimidating my son.

“There’s no bitch on earth like a mother frightened for her kids.”~ Stephen King

If that makes me a bitch? Fine.

I am preparing The Boy for independence. Just how independent his life will be is unclear as he’s still only eight years old, but I know I must push him and put him into situations that will push his boundaries. If I don’t, his world will be very small. The difference is that, being autistic, I know when to push and when to ‘ease off the gas’, as it were.

I also know when to change things that are no longer working..

One such thing is mainstream education. This last year, it’s become a struggle for The Boy, despite full one to one support and the best efforts of all involved. The problem is with the mainstream system, not the school itself. So he is being transferred from mainstream to a specialist school where he will be with other autistic children. Alongside the usual curriculum, he will be taught essential life skills in a controlled and safe environment. In mainstream this wouldn’t happen as the emphasis is on education, not life skills.

The school has 70 pupils ranging from 8 to 18 with class sizes no bigger than 6. In comparison to his mainstream class of over 30 children! So, this should help to lower his anxiety. It’s a fantastic opportunity for him and one which, thankfully, we didn’t have to fight for as it was the only viable option for him. If he was to remain in mainstream, he would have most certainly failed like I did and I can’t allow that to happen. What kind of parent would I be if I did? Nor could I rule out mainstream from the onset. My experience in mainstream was mega shit, but I didn’t want it to cloud my judgment regarding him. The difference is that The Boy has been happy whereas I wasn’t happy. Ever.

As positive as this is, it’s going to be a big change for all of us.

I will no longer walk him to school. He will use the transport provided by the school. Independence wise, It’s a massive step. If he were to remain in mainstream, there’s no way I could allow him to walk to school alone as some of the older children do because he’s too lost in his inner world to be aware of the dangers around him. He’d also copy the knobends who walk across school crossings when the red man is showing. What kind of example to kids is that?!

I want my son to live a full and happy life. I love him, so I have to start letting him go because the job of a loving mother is to let her children go. Even children with severe learning difficulties need a level of independence from their parents – even if it’s just for a few hours a day.

It would be easy to protect The Boy from the world and wrap him in cotton wool, but I would be failing him as his mother. Being too afraid to leave his own four walls because he’s stricken with anxiety or depression is no life at all and I speak from experience here. I grew up undiagnosed with no support and I’ve struggled EVERY step of the way.

I know I won’t be around for ever, so I must prepare him for that eventuality.

The Boy is limited by his diagnosis, but it was vital in order for him to access the support he needs. However, as things stand today he would be refused jobs simply because he’s autistic. Hopefully attitudes will have changed and companies will understand the value of autistic employees in the workplace by the time he is ready to enter the world of employment.

So, in a few weeks The Boy will start a new chapter in his life. I will stand outside our house as he gets onto the school bus and I will wave him off with faked enthusiasm – not because I don’t care, but because I care too much. I will have to call on ALL my acting skills to suppress my overwhelming emotions. As soon as the bus is out of sight I will probably go inside and drop-kick a cushion to the floor. Then I will collapse on it in a flood of tears..

My boy won’t be five minutes around the corner anymore. I won’t be able to walk past the school and wonder what he’s doing. It freaks me out just writing about it. I know I will struggle in those first few months. I will worry how he’s doing? If he’s happy? If I’ve done the right thing? Then I will remind myself that I am a mother. This is my job. His brothers are living their lives and I owe it to The Boy to give him the tools to be as independent and happy as they are.

The Boy is more than my son. He is a human being in his own right and a beautiful one at that. He shines as special children do. I want him to understand the positives of living inside the rainbow, because autism isn’t the tragedy that people imagine it to be. The tragedy is in the ignorance of people who don’t understand autism.

So, on with the journey.

 

 

 

 

 

 

 

 

Autism: When Awards Can Be A Negative Thing…

There was recently a thread on Twitter started by Claire Ryan who tweeted:

“When is giving a child an award at school, not an award at all?” – along with this excerpt about an autistic boy called Jack.

Jack reported being anxious recently in assembly as school were giving out awards. He would sit thinking ‘don’t pick me’. When he was picked he was very anxious and worried about which way to walk to the front of the hall with all people watching him. Jack was able to describe how this made him feel saying “my bones were dust..my brain was mush..if I could curl up into a ball and fall into a hole 50 feet deep”

A thought provoking tweet which stirred up memories of sitting in the school hall DREADING being given an award because of having to walk up to the front to receive it. You could bet your dinner money that somebody would stick their foot out on route to ramp up the humiliation factor and when you crave invisibility this is the LAST thing that you want.

My infants school had a ‘star’ system where children were awarded gold and silver stars for good work/behaviour. We also had black stars, which are sort of self-explanatory. Nobody wanted one of those. I liked the gold and silver stars because they were aesthetically pleasing. I like shiny stuff. What can I say? Maybe I was a cat in a past life. However, I did NOT like going up to the front of the class to receive one because it meant that everybody would look at me so I deliberately underachieved in my favourite subjects in order to avoid it..

For example, I purposely made myself read slower in order to avoid going to the teacher to get a new book. It seemed like I was below average but in actual fact I was an early self-taught reader who could easily read an entire book in a couple of hours at home. I was also reading books way beyond my age group but as far as the school was concerned, I was slow.

Despite my avoidance strategies, I would sometimes forget myself like when I ran a 100 meter sprint in the school sports. I didn’t realise how fast I could run and to everybody’s surprise, including my own, I won the race.

So, there I was, face down on the grass (dying) when I got an overpowering whiff of Paco Rabanne. This could only mean that my class teacher (and head of sports) was close by and sure enough he was standing over me with his mirrored sunglasses on looking like something out of Top Gun.

Actually, this anecdote story predates Top Gun but you get my drift?

He grinned at me.

Temporarily blinded by the glare off his whitened teeth, I gasped ‘Alright Sir?’

‘Well done young lady!’ *pats me on the back but I’m highly-sensitive so it feels more like a thump*

Then came the kick in the metaphorical flaps.

You’re in the athletics team and practice starts Thursday after school.

Shit. Shit. SHIT!!

Didn’t say shit, obvs.

Instead of feeling euphoric as I imagine most other children would – I felt sick to my stomach.

I didn’t want to be in the school team.

I didn’t even like sports except for watching football and Wimbledon. Plus, I did enough nervous sweating at school without having to work one up in my own time. The problem was that I couldn’t verbalise my feelings. I didn’t understand that I could have said no so I found myself turning up for athletics practice and the next thing I knew I was on a noisy coach bound for the local athletics stadium. Can you imagine how sensory that was? I was that anxious, I forgot how to hand the baton over for the relay race. That occasion was for town. Next came running for my county – by which time I was totally stressed out and visibly so. My mum asked me why I was doing it if it made me so unhappy? So I simply stopped turning up. Needless to say, Sir wasn’t pleased.

I don’t hold a grudge. How can I? He had no idea what was going on inside my body and mind as I wasn’t able to verbalise any of it. I suppose from his point of view it just looked like I was messing him about? He misunderstood me but then being misunderstood has been the story of my life.

Then there was the time when I got 98% in my history mock exam..

Teacher read out our scores. She read everyone’s name out except mine. That’s when I started to feel sick because I figured that I had either done exceptionally shit or exceptionally well.

Either way, it wasn’t good.

She read my name (and score) out and looked pleased for me. What she didn’t understand was that it reminded the class dickheads that I was there and that it had been a few minutes since they’d thrown something at my head. Needless to say, any sense of pride was obliterated by the feeling of wanting to die.

That 50ft hole that Jack described? I know it well.

I underachieved on purpose and the main reason was that achievement equaled anxiety.

The majority of replies that came from #ActuallyAutistic people (including myself) were that receiving awards causes distress and anxiety.

This isn’t to say that autistic people don’t want awards. Most people appreciate recognition when they have worked hard on something. It’s the social aspect of it that is the problem. For me, opening my book and seeing a gold star would have made me happy. It would have been enough. Having to face the entire class took the pleasure away and turned it into something very unpleasant. Just as being picked for the athletics team took away my pleasure of winning. For a child to purposely underachieve has a detrimental effect on their present and their future. No doubt Jack’s teacher meant well but despite their good intentions, the child was distressed.

It’s impossible to get things right every time but when teachers get it wrong they really need to learn from it.

The Boy likes to get rewards at school but he doesn’t like going into assembly to receive them. On a VERY good day he will go and get his award but will have to leave immediately. It’s all about gauging how anxious he is and if he is up for it or not on that particular day.

    • The thing with autism is that normal rules don’t apply.
    • Each child is different with individual needs.
    • Some autistic children are unable to verbalise their feelings.
    • An autistic child might be able do something one day but will struggle with same task the next.

To clarify. Autistic children like to feel a sense of achievement but how the recognition of that achievement is undertaken must be carefully thought out or irreparable damage could be done.

Teachers, take note.

Back in Time: The 1980s

We had it all in the 80s..

Goodish music, cool films, strikes, threats of nuclear war, creepy DJs and legwarmers.

It was also one of those rare occasions when we won the Eurovision.

What? No! It had NOTHING to do with skirts coming off!

A lot has changed in the last 38 years since the start of that decade. Technology has gone STRATOSPHERIC and I have no idea what’s happening anymore..

So, how about a few comparisons between then and now?

TV

Now. There are about, ooh, a million TV channels to choose from? Yet you can still spend half an hour flicking through to find there is NOTHING on. I literally spent AGES flicking through all the channels last night and I ended up watching Fawlty Towers which was made sometime during the middle-ages. ‘Flowery Twats’ may be un-pc these days but it’s still hilariously funny.

Basil to his car: Start, you vicious bastard. Oh my God. I’m warning you, if you don’t start… I’ll count to three. 1, 2, 3, right, that does it. I’m going to give you a damn good thrashing.

They really don’t make them as good as this anymore..

Then. We had THREE channels at the start of the 80s. BBC One. BBC Two and ITV. Channel Four was launched in 1982 so that made a grand total of FOUR channels to choose from. Channel Four was a God send for us teenagers with programmes like The Tube and Brookside. I mean, who can forget ‘Debbie and Damon’? De Romeo and Juliet of der Pewl, eh?

‘Come here boy! It’s been five minutes since I gave somebody a damn good thrashing!’

DISCIPLINE

NOW. “Oh yeah? What are you going to do about it, Sir. I’ll have you arrested, Sir. You’ll be somebody’s bitch in prison, Sir!”

Discipline in secondary school consists of after-school detentions, confiscations, isolation and exclusion. When it became illegal to thrash kids, teachers had to get creative – not to mention medicated. However, it’s my understanding that teachers still have the right to use necessary force pupils in certain situations like if they are going to harm themselves or others?

THEN. In my day you got thrashed with a big fuck off stick and I’ve seen numerous blackboard rubbers hurtling across classrooms aimed at somebody’s head. It’s a wonder there weren’t fatalities. Maybe there were? Come to think of it, pupils were prone to disappearing from time to time. Was it truancy? Or were they concussed in A & E?

The glory years of corporal punishment came to an end in 1987 (two years after I left) though private schools carried on thrashing until 1999. In this instance, I think that 2018 wins because there should never have been a place in society for hitting children.

NUCLEAR WAR

NOW. There’s probably have a game about it on X Box featuring zombies. Also, President Trump likes to have ‘my nukes are bigger than yours’ competitions with anybody who takes the piss out of his hair/face/tan/hands/leadership.

I’d say this gives some cause for concern..

THEN. In 1983 there were two close calls. ACTUAL danger of ANNIHILATION due to a tiff between the Russia and America. A generation of kids and their parents properly shat themselves worrying over this. Parents were stock piling tins of beans so in the event of nuclear war we could fart ourselves into comas. Thankfully it didn’t happen but it gave Frankie Goes To Hollywood some inspiration for their number one hit, Two Tribes.

Remember this?

“The air attack warning sounds like
This is the sound.

When you hear the air attack warning
You and your family must take cover.”

Magzilla
19 September 1983

PSYCHOTIC FEMALE PRIME MINISTERS

NOW. People think Theresa May is bad?

THEN. She’s aint a patch on our pearl wearing overlord!

Margaret Thatcher (or “that woman” as my Labourite father called her) ruled as PM throughout the entirety of the 80s. This was the woman who a few years earlier (as Secretary of State for Education) abolished free milk for schoolchildren. Also, she and her popular (not) Poll Tax was responsible for the worst riots in Britain. Thatcher was possibly one of the most hated women ever. Certainly wasn’t popular in our house. In my opinion, Thatcher makes Theresa May look like Jar Jar Binks – only in leopard print kitten heels.

LEGO

NOW. Parents have to take out a second mortgage so their kid can have the Star Wars Millennium Falcon? I am STAGGERED at the price of Lego these days! I want to buy a kit, not the company!

THEN. One board, some bricks and you considered yourself lucky.

PHONES

Now. I’ve yet to clap eyes on a young person who isn’t attached to their mobile phone via an umbilical cord. You see them slumped over their phones in McDonald’s – Diet Coke in one hand – mobile phone in the other.

ALL of them on their phones.

NOBODY speaking.

Are they all sat texting each other?

It’s possible.

Then. While mobile phones existed in the 80s – they were the size of a shopping trolley and cost a fortune so us peasants had to make do with landline phones or public phone-boxes. You know, the red ones that reeked of fags and wee?

‘Blocking’ was when irate parents fixed an actual lock on the phone after receiving a bill of EPIC proportions – £40 in 80s money and about £160 in today’s. This usually included a few months of being grounded. Early parole was usually granted because parents couldn’t cope with having stroppy teenagers under their feet being all hormonal and horrible.

MUSIC

Now. Auto-tuned, shit sampled crap with pornographic videos and lyrics that would give your nan a coronary.

Truffle butter? Do yourself a favour and don’t Google it.

You Googled it dintcha?

Certainly puts Madonna and her pointy bra into place, eh?

Then. Sexuality has played a part in music for decades. Elvis was thrusting his pelvis at teenage girls in the 50s and in those days it was shocking. In 1978 Olivia Newton John was prim and proper as Sandy in Grease – three years later she was wanting to get ‘physical’ with blokes in a gym and I don’t think she meant half an hour on the treadmill! NOT that I knew what it was really about then because I used to pull on my legwarmers and go round the house singing..

You gotta know that you’re bringin’ out
The animal in me,
Lets get physical, physical, I wanna get physicaaaaaal…

Highly appropriate when you’re eleven years old, no?

THE SELFIE

Now. According to University of Florida’s Eunice Kim and colleagues in a September 2016 paper, there are 93 million selfie postings every day! That’s a LOT of duckface!

Then. Selfies aren’t a new creation, I mean, what’s the difference between a self-portrait and a selfie? It’s still a picture of YOURSELF, right? People have been using cameras to take picture of themselves for decades, it’s just that it’s so much easier now. In my day if you wanted to take a picture of yourself it involved much faffing and possible blindness when the flash went off in your face. Plus we were working with actual film so posing your way through a gazillion shots was NOT an option.

The 80s were my teenage years and I am part of the generation before technology went supersonic. Sadly, teens won’t ever experience that kind of simplicity again unless it’s part of some historical experiment to show how we used to live..

Fast forward 38 years and we live in a technological world where we communicate more with strangers than we do our own families. For autistic people like me, social media helps us to socialise because we are generally crap at it in person. That said, social media is good in small doses because it can easily become overwhelming. Life is too technological for our brains to cope with and as a result our mental health suffers and we have to take social media and, in my case – technology in general – breaks.

I have mixed emotions about the 1980s. Happy because it was the decade where I became a mother. Sad/angry/scarred because I was bullied by twats. Despite this – the frankly criminal fashions and Agagdoo do do push pineapple shake the tree – the 1980s was simplistic in comparison to today.

For me, THE best decade was the one that preceded it. Yes readers, hold onto your goddamn flares because next time I’ll be hauling you back to the 70s!

 

All images are public domain

Margaret Thatcher

Alone in the Universe

I like to be alone.

I am completely comfortable in my own company, probably because it’s only when I’m alone that I can be myself. There’s no need to pretend to be normal. I can just be me.

When it comes to loneliness, people usually identify it with physically being on their own. Not me. I can be in a room jam-packed full of people and still feel incredibly lonely because I know I don’t belong. That’s my lonely.

I didn’t ask to be born. None of us do. We are here by choice or mistake and nine months later, out we pop, with no instructions on how to do life. We are at the mercy of those around us and all too often those people let us down.

Those people who had a duty of care to me at school let me down.

As a child I played alone until the age of five and then I had to attend school, or ‘shithole’ as I call it.

School was where I was expected to socialise and interact using skills which I didn’t possess or understand.

School was where I was bullied by children AND teachers.

School was where my sense of not belonging started.

It was clear that other children didn’t like me but I didn’t know why. I tried my best to be invisible but all that did was make me even MORE conspicuous. All I know is that I came to dislike myself too because of it. I couldn’t bunk off because I knew it was wrong. Nor was I able to express my struggles to my teachers or parents so I had no choice but to endure every hellish second of it until I got home.

Home was where I felt safe.

Home was where I was loved unconditionally.

Home was where I could lose myself in my obsessions.

Yet even with my closest family, I was unable to be me. I belonged, yes. My parents would have loved me regardless of anything but I didn’t know how to be myself in front of them. Most of the photographs from my formative years are of me looking away from the camera. That was me before life pressured me into being someone I wasn’t in order to try and fit in. Personas and masks became necessary in order for me to survive.

Something that is common to ALL humans is the need to belong and be accepted by others. I have a need to belong in some meaningful way just as much as anybody else and I want to leave this world having made a difference in some small way. Yet for most of my life, I have felt alien, like I don’t belong here. I breathe the same air. I am a human being in every respect of the word except that my brain is wired differently and people know you are different. They can sense it even if they can’t see it, like Will Smith in Men in Black, who can spot the aliens a mile off despite them wearing their ‘human suits’. That’s how it feels to be me sometimes – an alien wearing a human suit.

These past few months have been an eye-opener for me. The most important change is that for the first time in my life I no longer feel alone in this world. Why? Because there are 700,000 autistic people in the UK alone so add to the rest of the planets autistic population and that’s bloody shit-loads!

There is an autistic community where I don’t have to think, ‘Will this freak people out?’ before I ‘speak’ because people get it. Imagine. After ALL these years. I get to be my freaky self and other human beings say, ‘Yeah, I do that’.

AWESOME!!

I’m hoping that the therapy I am currently receiving will help to address the many years where I was treated badly simply for being me..

The girl who walked up to me one day and slapped me across my face for no reason at all? She was a coward. She was a big girl hitting a small girl – a bully who needed to be flanked by her cronies at all times. I blamed myself for so many years but I know now that I wasn’t responsible for what she did. Nor have I ever been responsible for the actions of others. The problem is with them, not me.

At some point I need to let the past go and move on in order to make the most of the time I have left. Four years ago I felt that nobody would ever understand how I feel. Then my son was diagnosed ASD and I knew that I was autistic too. On hearing my own official diagnosis, I got control back of my life. I know who I am now and why I am different and these next years of my life are going to be lived MY way. I may be in a minority but my life counts just as much as everybody else’s on this planet.

It always has.

I still like to be alone because that’s when I function at my best but liking to be alone and feeling alone in the world are very different things. That’s changed now. There are people in this world who get me. There are also people who don’t get me but are willing to understand and support me. So you see, I am not alone in the universe.

CC Image Via Pixabay

 

 

 

 

 

 

 

 

 

Hello Hurricane

Anger2

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.

guns-replaced-thumbs-up-20

Got Through Another Meltdown!

Image Credit Via Creative Commons

Sons, Sand & Sauvignon

 

 

Copycat Crisis

ninjago-766838_640

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.

Creative Commons Image

Sons, Sand & Sauvignon

Misfits and Meetings

COS_09

When it comes to school – I do the necessary. I drop The Boy off in the morning and pick him up at home time. Sometimes I go in to calm him down if he’s having a particularly difficult day, though I should add that it’s at my request that they phone me.

Some parents do other stuff like going in to read with the children and going on school trips etc., I don’t. Not because I’m a lazy cow who’d rather be sat at home watching Jeremy Kyle point at chavs – no- it’s because I have social, sensory and anxiety problems.

In every playground you will see the ‘perimeter ‘hoggers’. These are the lone wolf parents who lean against walls and railings looking at their phones trying to be invisible. I am one of those people.

My coats have pockets which disguise the fact that I am constantly fiddling with my keys. If I’m not fiddling with my keys I am looking at my phone – sometimes I am doing both. I look at the parents who socialise with ease and know it will never be me, not unless I have lobotomy anyway.

The thought of being jammed on a school bus with noisy kids is my idea of hell and when I was asked if I could help out I had no choice but to tell the truth.

‘I’m having a panic attack just imagining it. I’m not great with crowds and I have anxiety problems, you see. Sorry!

The school are understanding of this now and don’t ask anymore. I feel sad but accept that I have limitations and to push beyond those would do more harm than good as they would have a hyperventilating lunatic to look after as well as the children.

Thankfully The Boy has his SSA and he probably copes better without me in those situations as he could pick up on my anxieties no matter how much I tried to mask them – especially if a full blown panic attack was to occur.

However, when I heard that our SENCo was setting up a group with the parents of children with special needs, I knew I had to be part of it. I was apprehensive but knew the group would be small and that my friend would be there. She’s very lovely and reassuring, bless ‘er.

Having missed the first two meetings due to being elsewhere and, er, mixing the date up – I finally made the third.

Even something as trivial as this causes me anxiety especially when it’s something I haven’t done before, (fear of the unknown), but my mind was made up. I was going to do it because the school has given us so much support and I wanted to give something back.

So the day came and I ran through my notes.

Have something to eat so tummy doesn’t growl like a bastard.

Take reading specs.

Pen and paper because you know you’ll totally forget everything that’s said.

Wear hearing-aid to avoid saying ‘Eh?’ all the time.

Have massive wee before you go.

Drawing on my years of coping skills I went in earlier than the others. I find it hard to walk into a room with people in it I aim to be first in whenever possible. There were six of us in total – so a nice small group which I can cope with.

Heart clanging away I waited for the others to arrive.

I recognised one of the other mothers as a lady who used to work at The Boy’s nursery, (where he was first suspected of being autistic), so there was only one parent there who I didn’t know, at least by sight.

First job – tea and cake.

After years of practice I can now drink in front of strangers but food is still iffy. So the flapjacks were a no-go area for me. Better safe than choking to death having breathed in whilst trying to swallow, eh?

I may not have felt entirely comfortable but I was there.

Most people will consider this an insignificant thing. ‘It’s only a little meeting yer silly mare!’ but I know there will be others who will nod like mad. ‘Oh yes! That’s me too!’

It felt good to be in the presence of people who understand what it’s like to have a child with conditions like autism. They understand the daily challenges and judgement by ignorant gits. I’m used to the feeling of not belonging because I’ve never fitted in anywhere, (hence the misfit reference), but for the hour and a half I was there I didn’t feel quite the “misfit missy”as I usually do.

The school supports our son but they also support me. If I go into school to comfort him and the hall is full of kids catapulting themselves over the vaulting equipment the receptionist takes me around another way to avoid my anxiety levels going orbital. It’s a small thing but means that I am better mentally equipped to deal with my son’s meltdown.

I’m passionate about autism awareness so I really need to be as proactive as I can. My next goal is to attend the autism show. Don’t get me wrong I have been to crowded venues in my time – sometimes it’s required a nip of the hard stuff and sometimes I’ve gone in cold but it’s always been a struggle which is why I tend not to bother now.

It will be crowded and my anxiety will be off the scale both before, during and after but I figure that even if I was to lose the plot – it wouldn’t really matter because most people there will have seen much worse.

My drive comes from years of being ignored or misunderstood at school. Without doubt I have a learning disability and struggled every day of the ten years I was there. Nobody saw my distress and as a result I left school with nothing to show for it. Going through the SEN process makes me realise that, with support, I’d have been capable of much more. As it is all I have are a bunch of ‘if onlys’.

If only I’d have been allowed to stay in at play-times my anxiety might have lessened to a degree where I could take in information in order to learn.

If only I could have entered the class early and left after everybody else then I would have been spared the anxiety of being pushed and shoved in crowded corridors.

If only I could have worked in small groups – I might have learned something except fear.

If only I’d have had somewhere to escape to when it became too much instead of having to endure the stress, the stimulus and the bullying.

If only somebody would have seen beyond ‘shyness’ and recognised that I needed help.

How different my life might have been..

I point blank refuse for my son to go through that.

But thanks to an amazing school with teachers who care.. he hasn’t.

Image Credit Public Domain CC

Sons, Sand & Sauvignon