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.

 

 

 

 

 

 

 

 

Five Reasons I Hate Snow

 

1~ It’s cold.

Snow can be cold. The kind of cold that strikes through to the bones and freezes your snot. People say that children don’t feel the cold but they obviously never met the likes of me. Soggy mittens were never my idea of fun, people, hence I generally ‘enjoyed’ the snow from the warmth of the dining room window. That said, there have been moments in my menopausal journey where I would have given my right nip to be able to shove my face in a snowdrift..

2~ Aesthetics

There is something quite beautiful about fresh snowfall. I always marvel at the white blanket that magically transforms even the shittest of places.

Then humans and animals ruin it all.

First come the size 14 boot prints of the milkman.

Then, come the patches of yellow snow..

There is nothing remotely picturesque about a snow filled garden when you have dogs. Even less when it’s a small yard.

Then there is the joyous act of cleaning up after your four-legged friend has taken a dump in the snow..

Never had the pleasure of digging out a dog turd from 8 inches of snow?

You’ve never lived!

*snorts*

Lets not forget the lazy-arsed owners who genuinely believe that their dog’s excrement will dissolve in the snow so there’s no need to get that poo bag out eh?

What actually happens is that once the snow has melted – the pavements are smeared with poo which gets on everybody’s shoes and into their homes. Incidentally, these are the same breed of dog owners who believe that slinging shit bags into trees makes them inconspicuous.

*double snort*

3~ Driving

The problem with this country is that we are never prepared for wintry conditions. Our cars suddenly turn into Torvill and Dean – only less graceful.

To be fair, it’s the scariest thing to find yourself sliding down the road with absolutely no control whatsoever. I’ve had a few ‘squeaky bottom’ moments in my time so I avoid driving in the stuff whenever possible. However, I still get anxiety from watching other drivers sliding perilously close to my car as their back wheels have a mental breakdown.

Note to self: Next house must have a driveway.

4~ Snowballs (and other bodily parts)

No matter where you are or who you are with, at some point some idiot will throw compacted snow in your face and fall about laughing. For some reason, this is considered normal behaviour? But if I was to fast-spin a cricket ball at them, I’d be hand-cuffed and trundled off to the police cells.

*throws hands up in the air*

Then there are the snow-people complete with balls and boobs..

Nothing says Christmas quite like the sight of a snowman with a massive set of knackers on the front lawn, eh?

5~ It’s Slippy

As I’ve got older, there is another reason why I hate snow and ice.

It’s slippy.

The problem is that I have Osteopenia.

Osteopenia? Isn’t that a film about mods?

No, that’s Quadrophenia.

Osteopenia is the pre-curser to Osteoporosis. In other words – thinning bones. This means that I am more likely to break a bone should I fall over. Even a minor fall could have serious consequences. *serious face*

This is monumentally crap because I’m only 47 but it is what it is and all I can do is protect myself as much as I possibly can. So I fit contraptions to my boots (cleats) to stop me falling over and they do work. I am the ONLY parent on the school run who wears them. However, the well-being of my bones trumps dignity, no?

Note to self and other snow grip users: Do NOT attempt to walk on a tiled floor with your ‘cleats’ on. You’ll be on your arse faster than you can say Bolero!

Then there are the women who wear high heels when the pavements are blatantly icy. What’s more is that they manage to stay vertical! There’s me taking tentative steps despite the protection of my grips and they overtake me wearing stilettos as if they didn’t get the memo that it has snowed!

Witchcraft?

One theory is that the heels act like little ice-picks so maybe there is some method in this madness?

Even so. I think I’ll stick to my flat heeled boots and snow grips, ta very much. I’d rather look like Nanook of the North than end up sprawled on the pavement with a busted hip.

So, there are my five reasons why I hate snow.

Let it snow, let it snow, let it NOOOOOO!!!

I rode on a plane a couple years ago with Snow Patrol and didn’t know who the hell they were. They said they were big fans of mine and were playing Madison Square Garden. And they let me listen to one of their records on their iPod. I started to weep. ~ Neil Sedaka

 

 

The Teenager That Santa Forgot..

One year, Santa forgot me.

It’s true.

To be fair, I wasn’t a small child. I was a teenager.

So how did I come to be left off Santa’s list?

It was 1985. The year of the first successful heart transplant, Windows 1.0, The Golden Girls, The Breakfast Club, Live Aid, Take on Me and wearing your jacket sleeves rolled up Miami Vice style..

I was:

Fifteen. Teenager. Vegetarian. Knew Everything. Annoying.

I don’t remember how I came to be vegetarian, I just know that from 14 I declared myself a meat free zone. I lived on cheese, as 80s vegetarian options looked (and tasted) like Trill. Thank God for Linda McCartney, eh? Problem was, Mum never did understand the concept of vegetarianism. She gave me cheese in place of meat but then poured gravy over it which kind of defeated the object..

Maybe it was hormones combined with my undiagnosed autism (and copious amounts of cheese) but my teenage years were funked up and not in a good way..

I’d argue that black was white and I’d do it with a PASSION. Not content with being meat-free, I terrorised everybody else for being ‘murderers’. Dad took it all in his stride. He thought it was hilarious, but Mum was suffering from the menopause (or rather we were suffering from her menopause) and that particular year she and I clashed more times than a pair of cymbals.

By Christmas, I was struggling. Doing the social thing exhausted me mentally and physically. Going out took hours of stimulating myself with rock music and days of recovery time afterwards. Every time I convinced myself it would get easier but it never did because exposure only works with shyness and I wasn’t shy. I was autistic.

That year I’d asked ‘Santa’ for loads of records including The Cult’s ‘Love‘. I’d been borrowing my mate’s LP but she was pissed off with it spending more time on my record player than hers, so I was looking forward to getting my own copy. Gimme a whoop!

Christmas Eve

We were allowed to lie on the sofa watching films all day and the jar of Quality Street was ceremoniously opened. It was a good day and in the evening Mum challenged her inner Hyacinth Bucket (It’s Bouquet) and did a candlelight supper, which was V posh.

I felt very grown up.

I was even allowed wine. SHHHHHHHH!

Dad was on the Jack Daniels.

Brother was semi-pissed on Southern Comfort.

Mum was on the Stella (I’ll fight you and everyone else) Artois.

Everyone was happy.

Until it went tits up..

I don’t remember what I said, exactly. Maybe it was something about meat and murder again? I just know that I opened my big mouth and said something that had my mother slamming the louvered doors off their hinges as she flounced off into the kitchen.

In my confused mind, ONE thing registered.

SHIT!

Dad was rolling his eyeballs.

Brother was smirking at me.

Elvis was crooning Blue Christmas in the background.

My mother was turning the air blue in the kitchen in-between nose blowing sessions.

Tentatively, I inched my way into the war zone but took one look at her face and knew that grovelling was futile. She looked like Alice Cooper, only with red eyes. Even in my limited understanding of body language, I knew my best (and only) option was bugger off upstairs and leave Dad to smooth things over.

So I went to bed and endured one of the most miserable nights of my 15 year old life.

What, in the name of Ian Astbury, had I said to incur SUCH a reaction?

I still don’t know.

All I know is that I was forever being reprimanded for ‘showing off’.

Showing off?

Er, I’M AN INTROVERT?!

In hindsight, I know that the Christmas Eve fiasco wasn’t ALL down to me. I blame Stella Artois and lack of oestrogen. Stella because it always made my mother do the crying thing and lack of estrogen put her on a permanent hair-trigger. It could have just as easily been my dad or my brother who said something to upset her, eh?

But it wasn’t them.

It was me.

Mostly what got me into trouble were my meltdowns. I’d become overwhelmed, therefore out of control, and it was interpreted as me being a little shit – as so often is the case with autism.

Nobody knew I was autistic.

Not even me.

Christmas Day

I unenthusiastically wished Jesus a happy birthday and prayed that he’d put in a good word with my mother overnight and she’d forgiven me for “ruining Christmas”. I lay in my miserable pit until I heard sounds of life downstairs, then slowly made my way down into the kitchen where Mum was perched on her stool puffing away on a Silk Cut. She narrowed her eyes at me. This look meant, ‘Approach me NOT. I’m still pissed off with you!’.

I slunk into the living room..

There, lit up in all it’s magnificence was our faux Christmas tree and underneath it were three piles of presents.

One for my brother.

One for my dad.

The third pile was my mother’s.

FUCK!

Didn’t say fuck – obvs -my life was hanging in the balance as it was.

For the first time in my existence, Santa had forgotten me.

I’D MADE THE NAUGHTY LIST.

THE SHAME!

Mum looked weird. Sort of angry and sad at the same time and that’s quite a hard one to pull off!

Brother was still smirking. That litle shit positively basked in my misery!

Tears slid down my face.

I don’t think I’ve ever felt so sorry for myself in all my life.

Dad couldn’t take it anymore. He looked at Mum and said, “You’ve made your point Flo. Come on now. It’s Christmas”

Mum snorted and flip- flopped upstairs in her new mule slippers.

A few minutes later she appeared with my presents.

She went from angry to misty eyed in a matter of seconds and hugged me so hard I thought she’d busted my lung.

“And let that be a lesson to you, Madam!”

Despite having no literally NO idea what this lesson was supposed to be, I chose to keep my trap shut.

Maybe that was the lesson?

Ordeal over, I started ripping into my pressies with the finesse of a three year old on E numbers.

My first gift?

It was Love.

When I tore off the wrapping paper that Christmas morning in 1985, I had no idea that 32 years later, the lyrics to the title song would have such significance to my very existence on this planet.

I guess you could say that I’ve spent most of my life in the ‘wrong hole’?

Now don’t go and ruin this moment by thinking rude thoughts about holes? *serious face*

I mean ‘wrong hole’ as in trying to be neurotypical.

Spent a long time in this hole
Spent a long time in the wrong hole

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Senses Working Overtime

I’m hypersensitive.

It means that I experience the world in an overly-sensitive way both physically and emotionally.

Hypertactile

For me, this means that I feel discomfort at the slightest touch – cue Five Starr with their MASSIVE shoulder pads. A hand on my arm can feel like a punch if I’m sensitised enough. Sometimes OH will touch my arm and I recoil as if I’ve been shot. I can see how this affects him but I’m unable to reassure him that it’s me, not him, because I struggle to verbalise how I feel.

I also can’t tolerate certain materials which are itchy and scratchy.

Aren’t they characters in the Simpsons?

Many of my clothes have ended up in charity bags due to them irritating the crap of me. Shoes, the same. I don’t like to feel as if I am wearing clothes, see. Sounds kinky, I know, but what I mean is that materials have to be soft and not constricting..

It’s been trial and error over the years. Like when I knitted myself a mohair jumper. I know, I’m an idiot, right? It took months to knit the bastard thing. I wore it once and chucked it straight in the charity bag because I itched like a dog with fleas. Lesson learned!

After decades of buying the wrong stuff, I’ve finally settled on leggings, tunic top and boots in Autumn/Winter and Spring/Summer is jeans, tee shirt and a pair of Converse hi-tops.

Not forgetting my beloved cardigans, one blue, one black, with pockets which I wear ALL YEAR ROUND!

Hypervision.

This means that I see what most people don’t. This can be annoying AND wonderful.

I see details that most people miss. This came in handy when I worked as a packer in a pharmaceuticals warehouse because I picked up on subtle differences in packaging, IE, counterfeiting.

It also means that fluorescent lights give me migraines, as does sunlight and the blue light emitted from computers and tablets.

Hyperhearing

I used to jump EVERY TIME the school bell went and without looking up I could tell which teacher had entered the room by the sound their shoes made. Some shoes were soft and and pleasing whereas others were squeaky and f**king annoying. My maths teacher in secondary school had a particularly irritating squeak in his right brogue and he was wearing the same pair when I left four years later..

Traffic also annoys me and don’t start me on emergency service sirens. On a good day they are LOUD. ON a bad day, hearing nee-nars makes me want to rip my ears off and sling them in someone’s privet. I also hear low level buzzing noises that nobody else can. Only thing is that since I developed tinnitus, it’s hard to work out what is actual buzzing and what isn’t..

I used to be able to hear a bee fart in the next street but over the years I’ve lost hearing in one ear. This is both good and bad. It means that the other ear over-compensates – which is disorientating. I do have a sexy hearing aid courtesy of the NHS but it amplifies sound too much and increases my sensory issues, so I hardly ever wear it, hence I say, “Eh?” and “What?” a lot.

On the other hand it helps when my tinnitus is giving me gyp.

The reason why autistic people have hearing sensitivity could be due to differences in the temporal lobe of the brain, which is the area that deals with auditory processing. Or it could be that responses are learned. I don’t think they know for sure why it happens..

By far, the biggest problem with my sensitivity is that I feel too much. Swiss researchers, Henry and Kamila Markram argue that the fundamental problem with Asperger’s is ‘hypersensitivity to experience’. Rather than people with Aspergers not feeling enough – the Markrams say that it’s actually the opposite and they feel too much. That’s definitely true of me. I’m both physically AND emotionally sensitive. Unkind words really hurt me. They scar me. You just can’t see them like a physical one.

If I see a homeless person lying in a doorway, I hurt for them. The down and outs. The underdogs. Life’s rejects. The weirdos. The persecuted. I hurt for them ALL. Emotionally I am a wreck of a human being and my sensitivity is the reason that I try and stay away from the news because I get overloaded with people’s pain. I know that most people see things on the news and feel empathy but it doesn’t haunt them forevermore. That’s the difference.

I HATE how people lie and deceive. To put your faith into someone only to be betrayed is soul destroying. Having been officially diagnosed as autistic, I understand how my vulnerabilities have been exploited over the years. People sense I’m different but they mistake silence for weakness.

Here’s the thing..

It’s NOT weakness.

Can you imagine how hard it is to exist in an increasingly sensory world?

To constantly feel that you have to adapt and camouflage yourself in order to fit in?

To live your entire life in a state of anxiety and having to make choices between everyday situations in order to lessen the stimulus?

To live like this EVERY SINGLE DAY takes strength my dears.

Neurotypical people do those things without thinking whereas I have to think about almost everything I do, even how to breathe when my anxiety is bad enough.

I guess that my problem is that I am just too sensitive for this world.

“You,” he said, “are a terribly real thing in a terribly false world, and that, I believe, is why you are in so much pain.” Emille Autumn ~ The Asylum For Wayward Victorian Girls.