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

Things People Say That Drive Autistic People NUTS!

You don’t look autistic.

Is autism supposed to have a look?

When a person says, ‘You don’t look autistic’, it’s fairly obvious they don’t have a blithering clue what autism is. Maybe they watched Rain Man and believe that every autistic person looks like Dustin Hoffman?

Or, that you should be wearing a skull guard helmet..

In all fairness, people probably think they are paying you a compliment (ish) but what they are actually doing is belittling the difficulties that you face on a daily basis. Also, in that person’s eyes it puts you above other autistic people (such as those who do wear protective head gear) because you can pass for ‘normal’ and they can’t.

Here’s the thing..

I don’t consider myself to be better (or less) than any other autistic person.

I don’t consider myself better (or less) than any neurotypical person.

We are all human beings.

You’re obviously high-functioning.

If by high functioning you mean I can speak, dress myself, take myself to the toilet and do housework? Yes, I can do those things.. However, to me, the term ‘highly functioning’ implies that I can do things WAY better than the average person.

A super functioner?

Where’s my cape and tights?!

Super strength? FUNCTIONING.

The reality is that a good day requires a LOT of effort and some days I struggle to function at all. When I am overwhelmed, I stop functioning aside the very basics needed to keep my family and myself alive. I shut down. I can’t speak. I can’t read beyond a single sentence. I can’t complete simple tasks like washing the dishes or folding laundry. My brain buffers, then freezes and it can take days for it to unravel itself. I have to spend hours on my own in order for this to happen.

Last night, I was in bed for 7pm.

I’m 47!

Would you say this is functioning highly?

What’s 97865 multiplied by 98?

Why do some people assume that autistic people are math geniuses?  I can’t stand the motherfudging subject!

My dislike (bordering on the pathological) of mathematics started in 1975 with the words ‘add and take away’.

I’ve been hyperventilating ever since..

I can give you the answer, but I’ll need a calculator.

In contrast, The Boy could recite his entire 12 times table at the age of 4. He likes maths – the weirdo.

What medication do you take for it?

I don’t take medication for my autism because it’s NOT A FARKING ILLNESS!!

I do, however, take medication for migraines, arthritis and the general aches and pains which comes from being an old fart.

Autism is an excuse for bad behaviour.

Autistic people don’t choose to have meltdowns.

They don’t wake up and think, ‘You know what? I REALLY fancy losing my shit today. Toast, anyone?’

It’s not a nice feeling to lose control, whether it manifests outwardly or internally. It is a reaction to overwhelming situations and having to use up so much energy trying to survive in an overwhelming world.

It’s EXTREME ANXIETY, not bad behaviour.

My sister’s friend’s brother is autistic. You’re nothing like him.

Firstly, I don’t have the necessary parts to be like your sister’s friend’s brother.

Secondly, no two autistic people are the same – just as no two NT people are the same.

Autistic people have similarities but all have different abilities and strengths. That said, we do share one thing in common, which is that each and every one of us is FABULOUSLY AWESOME!

You’re married, can hold down a job, have children. How can you do these things if you’re autistic?

With a great deal of effort, cocker.

I drive as well! Fancy that? An autistic person being let loose on the roads. QUELLE HORREUR!

P.S 25 + years of driving. No points. No parking tickets.

I also manage to drive AND lick the windscreen at the same time.

You’ve just been sarcastic. YOU CAN’T BE AUTISTIC!!!!!

I do irony too.

You’re a person with autism. You should use first language.

I am autistic. I am an autistic person. My autism defines me otherwise I wouldn’t be me.

Here, I can only speak for myself as some autistic people wouldn’t thank you for calling them autistic. They would be up in your face faster than you can fart. Having said that, the majority of autistic people use the term ‘autistic person’.

Incidentally, I saw a Facebook thread where the parent of an autistic teenager was having a mini-rant about people using the word ‘Aspie’ because it’s insulting, apparently.

The fact is that most people with Aspergers, refer to themselves as an Aspie.

I refer to myself as an Aspie but primarily I am an autistic person.

 

You can look me in the eye. You can’t be autistic!

Technically, I’m looking above your pupil but it’s such a subtle thing, you’re unlikely to be aware of it. As a child, I spent hours standing in the corner at school for being ‘rude’ and not looking at the teacher. I wasn’t EVER being rude. It distressed me to look people in the eye, so, technically, I was abused by every teacher who ever punished me for not doing it.

It’s taken decades for me to be able to maintain eye contact with people other than my immediate family and even now, when I am anxious, I will spend more time looking at your feet than your face. I have to remind myself to look up occasionally.

Yes, I can look you in the eye – sort of – and I am autistic.