One year on.

One year ago, I wrote a blog post about my eldest son. I had spent the evening before googling what it means to be 16, and comparing it against what it means for him (as an autistic child) to be sixteen.

A lot of the points I made are still relevant today, though several of them have changed since.

Of the four points I mentioned (Crime related issues, Sexual activity and relationships, Medical care, and finally schooling) We’ve experienced the most change in the last two.

Medical care, and funding for a child over the age of sixteen with a disability is an absolute joke. We’ve so far filled out four seperate multi-page (20+) forms. I say we… my OH filled them out. She’s well aware how bad I am with forms. Of these forms, if you make the slightest error on submission, they reject the claim, and that’s that. We missed a tick box on the 50+ questions, and as a result, have had to resubmit. The amount of trick questions asked are ridiculous, and the entire form is geared towards physical disability, rather than mental. From speaking with friends, it also seems like the staff processing these forms don’t understand mental illness, which doesn’t help.

You’d also think that once you’ve been evaluated by a government employee, that this would go on record, and be shared between teams. Nope. Every single team involved wants a seperate report.

I don’t want you to think I don’t understand why there is the need for all this documentation, and investigation. I completely understand. The amount of people claiming disability for minor ailments is ridiculous. A friend of a friend used to claim disability for epilepsy. She’d had a few minor fits, but nothing major. Both her and her partner were receiving both Disability living allowance, carers allowance, and a number of other payments. This enabled them both to travel quite extensively to conventions and on holidays. Yet they weren’t able to work. I’ve worked alongside a number of people with Epilepsy, and there was always an understanding of how to deal with fits amongst those who worked around them.

Rant over on that one though. Its a deep rabbit hole to stumble down.

Schooling though, this one has made me incredibly happy. Until July, my son attended a local school. It was specialised for dealing with children with special needs. He was in a class with 6 other children, and taught by two members of staff. Rather than teach at multiple levels, they taught to the lowest common denominator, and as such, half the kids were releasrning the same things term after term. We’ve always said that our son knew more than he let on in class, but they never really had the capacity to challenge him, so he carried on as he always did.

In late August, after lots of chasing, we received confirmation of his place at college, though they were placing him in a life skills class, in much the same way that they’d done at School. We challenged this, explaining that he really wanted to be studying Arts & Media. We managed to get him signed up for a mainstream course, with support. They tested him, and confirmed that they believed he should start working towards a GCSE in both Maths and English, as he had the capability for this. SEE! Bloody told you! Ahem.

Since September, we’ve made huge leaps. He now travels by himself on the bus each day, walking by himself to the bus stop, nad from the bus stop to the college. Its bloody terrifying, but its a massive step for him. He controls his own dinner money, and is responsible for getting himself in to school on time, and to each lesson. He gets homework now, and completes it without chasing, in plenty of time for its hand in. Since last year, he’s matured a huge amount, and continues to do so on almost a daily basis.

His sense of humour shows a lot more now too. Earlier, he came down to grab some fizzy. Its his major weakness. We’ve got a bundle of snacks in for him, and along with that, 3 different bottles of fizzy drinks. My OH turned to him, and said, “You can have whichever drink you like! Dr Pepper, Fanta, Cherry Coke…” He grinned, and said “But not Wine!”

He grinned even more when we said “you’re seventeen now, you can if you want!”

 

I wish I knew a Super Hero! (I know loads, don’t tell anyone!)

I Wish I knew a Superhero!
Little Mary said
With a cape upon his back
and a mask upon his head!

He’d fight against slime monsters,
and horrors that cant be seen,
He’d make us all feel safe
and keep the whole town clean.

Mary’s mum smiled at her
and wielded a cloth and spray,
she cleaned the sides and table
and wiped the germs away.

I Wish I knew a Superhero,
Mary said as jumped from the swings,
With magical powers to heal,
and lift you, on magic wings.

she’d always keep an eye on me
and wouldnt moan at all,
she’d watch me from a distance,
and catch me when I fall.

Her Mummy caught her from the swings,
and swung her past the trees,
she put her back down on the ground
and brushed dirt from her knees.

I wish I knew a superhero
she said as she stamped her feet
who could use telepathy,
and knew what I wanted to eat

He’d read my mind at bedtime,
and I wouldnt need to fear
that I couldnt remember the name of
the story I wanted to hear.

He’d check under the bed,
and the cupboard by the door
and be ready to fight (if necessary)
the monster I’d heard Roar.

Her Daddy turned the light out,
and kissed her on the head,
“Good night sweetie, go to sleep now,
its time to go to bed”

He checked inside the cupboard,
and gave Mary a little smile,
Sweet dreams my fairy princess,
I’ll see you in a while.

Downstairs her parents listened,
as their daughter began to snore,
they took off their capes and masks,
and they hung them on the Door.

Messy Dragons! (With Artwork by Maia)

This was probably my first story for the boys, in a poor attempt to get them to tidy up after themselves. (Spoiler, it didn’t work) I think they were 8/9 at the time…

 

On a far away Hill,2014-02-24 12.54.08

In a deep dark cave,

was a place you only go,

if you’re feeling very brave.

 

 

 

2014-02-24 12.54.30

The cave was very messy

and had a sort of gloom,

It belonged, you see to dragons,

it was a pair’s bedroom.

 

 

The Dragons names were Jason,

2014-02-24 12.54.49

and Daniel, though its fairly,

safe to say these dragons,

werent particularly scary.

 

 

 

Their cave was filled with treasure,

2014-02-24 13.04.16

(not neatly kept at all),

it covered most of the floor,

and it reached up to the walls.

 

 

Their parents were quite saddened,2014-02-24 13.04.26

But you’d have to be a nutter,

to tell a pair of dragons,

to tidy up their clutter.

 

2014-02-24 13.04.44

So their treasure got too messy,

since they wouldnt lend a hand,

and rumours of the treasure,

spread across the land.

 

 

Soon adventurers came visiting,

2014-02-24 13.55.13

(not at night, but during the day),

and while the pair were sleeping,

took the treasure right away.

 

 

Dan and Jason woke up early,

2014-02-24 13.55.23

and let out a painful cry,

their treasure pile had gone away,

whilst asleep they both did lie.

 

 

They thrashed about and cried and wailed,2014-02-24 13.55.38

and thought they they had been,

very silly dragons, for not keeping,

their room clean.

 

 

Now if you should see them today,2014-02-24 13.55.52

in their cave so far away,

“why this room is sparkling clean”,

is what you’re sure to say.

 

 

For those dragons learnt their lessons,2014-02-24 13.56.03

and their cave is adventurer free.

because they make sure every night,

that their bedroom is tidy.

 

I wish I could draw…

I’ve got all these words in my head, that are actually pictures, but due to my lack of skill with a pencil, it comes out in words instead.

I wish I could draw a proper Belly-button fluff monster.

 

Lots of parents tell you,

How its important to be clean,

To wash your face, and brush your teeth,

And make your long hair gleam.

But theres other things you need to do,

Some folks forget this stuff.

But its vitally important,

To get rid of belly fluff.

With teeth you could get cavities,

Or smelly breath at least,

But with belly buttons left unchecked,

You could get a belly fluff beast!

I knew a little girl,

With hair like golden honey,

Who’s belly button filled with fluff,

It really wasn’t funny.

Her Mummy looked, one afternoon,

And saw fluff all dark and black,

She peered a little closer,

And something peered right back.

Her Mummy was a little shocked,

And put her arms over her head.

The belly button beast jumped up,

And ran under the bed.

So they crouched under the bed,

And tried to call and shout,

But no amount of coaxing,

Could draw the small beast out.

Her mummy got the hoover,

Because the best that she could figure,

Was she’d hoover up the little beast,

But, it only made it bigger.

The beast ate up the hoover dust,

And with a dance and twirl,

It gave a grin, and turned around,

then ate up the girl!

The mummy shrieked and ran away,

But the monster looked quite green.

He’d forgotten that this little girl,

Was rarely very clean.

He spat her out and ran down stairs,

(she didn’t find it funny),

And with a chomp (and a gulp or two) ,

The beast ate up her mummy.

The moral of this story,

Is always clean your tummy!

Because if you don’t, the fluffy bits,

Could maybe eat your mummy!

But worry not, this tale ends well,

The monster turned quite green,

For the Mummy also had forgot,

To keep her tummy clean!

This one made me chuckle when writing it…

I need to clarify… I have no point of reference for this short story. None at all. Stop looking at me like that! My health is on the line here!

 

Some stories teach us new things,

some stories act as warnings.

This ones here to tell you,

to not wake mum in the morning.

 

I think it best to explain to you,

The perils plain to see,

If you get your mum up out of bed,

before she’s had some tea.

 

With out a morning cup of tea,

and five minutes on the couch.

you run the risk of waking up,

the mummy monster grouch.

 

I knew some boys, aged nine and ten,

who didnt heed this rule,

they woke their mummy up early,

it really wasnt cool.

 

The mummy monster was summoned,

and came stomping from her room,

too late the boys realised their fate,

and ran screaming from their doom!

 

The mummy monster lurched after them

and gave them both a scare,

they screamed and ran away from her,

and legged it down the stairs.

 

She followed after them slowly,

into the kitchens ran her sons,

there was the sound of running taps,

and they put the kettle on.

 

The mummy monster caught them,

but they managed to struggle free,

and quickly they distracted her,

with a freshly made cup of tea.

 

The Mummy monster went away,

and away went the mommy grouch,

and normal mummy came back,

and settled on the couch.

 

The mummy monster grouch scares dad,

and the best thing he has said,

is that maybe next time it would be best,

to leave mummy monster in bed.

 

And more old Stuff!

I sat down, trying to remember where I’d hidden my old stories. Dropbox was looking far too tidy, I was far too lazy to dig out my external hard drive from under the TV, and my Documents folder was emptier than my memory.

Fortunately, a quick dive through my “Stuff” folder in my email turned  up some … Well, Stuff I guess.

This first one was a poor attempt by me to get my kids to eat more fruit!

download

Theres a hidden stage in history
It really was a hoot
but these days no one talks about
the war against the fruit!

How apples stalked our forests,
and Tomatos lay in wait,
and how farmers made it safe again
to pass the orchard gate!

In bygone days, after dinosaurs,
vegetables ruled the land
and fruit and veg were vicous beasts
and hunted after man.

 

A family ran in terror

being chased by a crazy plum
they were rescued by a farmer
who shot it with his gun.

He sat the family down,
and listened to their ballad,
then he armed himself, and rubbed his tum
and said “who wants some salad?”

from then on it was mayhem
some say that it was fate!
not a single fruit or vegetable
was safe from the farmers plate.

Now-a-days farmers help us
so that no one has to yield
they keep the fruits and veg tame
and grow them in their fields.

BUT, we must keep out a close eye
to keep the wild fruit at bay
by making sure we all stick
to eating five a day!

Stories with a relatable experience…

When I was working for my sons school (about 3 ish years ago now) I went on a course to become an ELSA (Emotional Support Literary Assistant (or something similar, my brains a little fuzzy on the exact words). One of the subjects covered on the course was how useful stories were as a tool for explaining situations to children that they perhaps might not understand if told directly. This has hit and miss use with Children with Autism, as directness is often the best approach (most don’t do subtle). That said though, its been useful with my other children.

I’ve written a few stories to help my kids remember to do things, (Dirty Dragons: Help remember to tidy their room) (Belly Button Fluff Monster: Personal Hygene) and so on, but my favorite so far is the following;

I’ve got a Brother
he’s different from me
not just in his looks,
but in the way that he sees.

Where I see a spilt drink
or some food mixed together
he sees a tidal wave
or the worst problem ever!

He sees disaster in running out of crisps
and runs from the room at the sound of a whisk

But he’s still my brother,
though different I’d claim.
but no matter our diffence,
I still love him the same.

 

I’ve got a Brother
he’s different, understand
not just in his behaviour
but in the way that he stands.

When I’m watching the telly
I sit still,and I’m calm,
but he runs around the room
and he flaps both his arms.

He gets over-excited and wont sit or linger
he makes funny noises, and wiggles his fingers.

But he’s still my brother,
though different I’d claim.
but no matter our diffence,
I still love him the same.
I’ve got a Brother
he’s different its true
not just in his sentences
but the words he may choose

Whilst some might be careful
and choose words that are kind
He may just blurt out
the first words in his mind.

“I don’t like this food, it makes my bum smelly!”
or “you look like you’ve got a baby in your belly!”

But he’s still my brother,
though different I’d claim.
but no matter our diffence,
I still love him the same.
I’ve got a Brother
he’s different I’ve heard
not just in his hearing
but in the way he hears our words.

We often use phrases
that arent exactly what we say
whilst we understand that
he doesnt see it that way

So we should be careful around him and try not to scoff
when he freaks out at the thought, of “laughing your head off”

But he’s still my brother,
though different I’d claim.
but no matter our diffence,
I still love him the same.
I’ve got a Brother
He’s different I’ve found
not just in his focus
when he’s in cloud cuckoo land.

When my parents call for me
I come straight away
but sometimes when they call him
He’s gone half a day.

When he’s being a superhero, with his supercloak unfurled
its like he’s inside a bubble, and switched off the outside world.

But he’s still my brother,
though different I’d claim.
but no matter our diffence,
I still love him the same.
I’ve got a brother
He’s different I’d bet
And its never more evident
than when he’s upset.

When I’m sad I’m grumpy
Or I scream doom and gloom.
When he’s sad he’s quiet
and he hides in his room.

its not that he’s ok, he just cant explain his feelings
but inside he’s screaming, and running on the ceiling

But he’s still my brother,
though different I’d claim.
but no matter our diffence,
I still love him the same.
I’ve got a Brother
and I’m glad that he came.
He’s Autistic, but really,
I still love him the same.