Tag Archives: autism awareness

‘Twas the Night Before a Different Christmas

‘Twas the night before Christmas, when all through the house
a creature was stirring, a lot louder than a mouse.
The stockings were hung by the chimney with care,
But instantly pulled down, cause they don’t belong there!

Other’s children were nestled, all snug in their bed,
while mine had numbers and overload consuming his head.
And Mama was tired she felt really crap,
She wanted a Christmas like those other people had

When out in the corridor there rose such a clatter,
I sprang from the couch to see what was the matter.
Upstairs my son had escaped with a flash
Entering his room I heard a loud crash.

The moon shone its light through the curtains with a glow
While the Christmas stocking lay alone on the floor down below
It was not welcome, it had been a strange thing to appear
‘Cause he didn’t know about a sleigh and eight tiny reindeer.

I tucked him in calmly with a kiss so quick
To him there was no person called St. Nick.
But Christmas is not what it is to claim
We can call it something different, a new name

“No Dasher! No Dancer!
No, Prancer and Vixen!
Or, Comet! Or, Cupid!
Or, Donner or Blitzen!
The strangeness is scary
With meltdowns a plenty
So dash away! Dash away!
Dash away, No entry!”

I unwrap every gift to remove the surprise
Making it clear what has been left to find
We listen for murmurs of our little dude
Because a load full of toys will be left for him too.

As the morning light dances onto the roof
Little footsteps can be heard while we’re still aloof
As I draw my covers downwards I look all around
My boy comes into the room with a bound

He is dressed in his pyjamas, from his head to his foot,
and he announces for rice cakes, I go have a look
The toys sit untouched all alone in a stack
My boy has grabbed the familiar toys he knows back

But my boy’s eyes-how they twinkle! His smile, so merry!
His cheeks are like blossoms, his feet a little smelly!
His little mouth is drawn up in a smile,
His blonde hair so bushy in one big pile
He opens his mouth and produces a gap in his teeth
He brushes past the big unfamiliar Christmas wreath
It is just a normal day with a bit of telly
Just like every other day full of jolly

As food is prepared with goodies from the shelf
He holds an apple, the outcome from stealth
A wink of my eye and a twist of his head
I soon realise that this is not a Christmas I need to dread.

As the others eat turkey and all the trimmings
My son sits on the couch with with his Christmas bringings
A pizza with small hot dogs on the side
Who needs a spread when your favourites are tried

We don’t need a Christmas card representation
It’s our family Christmas, our own homemade tradition
We don’t need the presents or big fat old bird
We don’t need the silence where nothing is heard

Cause Christmas is a tradition made our family’s way
Where you can do what your like, your own special day
And if that is the same as everyday before
That’s OK, it makes it less of a chore.

So Merry Christmas to all on this strange dark night
Where we do things differently, we do them right
As I look at the smile on the face of my son
He creeps quietly upstairs because he is done.

Merry Christmas Everyone

🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠

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Key to the City!

After the day I had today, I am officially getting the key to the City. A blue key that will open doors for us.

Literally!

We are in tier 4, also known as, absolutely-no-where-to-go zone. We had to get out, so realising that every park was going to be heaving I just said “stuff it”, pulled on my mask and hoped the outdoor air would blow any new covid mutations in the opposite direction.

It went well.

The boys scooted, scaring innocent bystanders with their Tommy Hawk style swerves, making them jump the required two meters in distance. I sweated as I ran to try keep up, screaming “STOP!!!!” in the same amplification of voice and tone as shouting at a thief running off with my bag! Arms and legs waving like a frantic lady unable to control her brood.

I make a mental note that Ugg boots were not the right shoe for this type of occasion!

But this was the norm for us. There was no stress, just fresh air and stares from the public who are not use to our unique family quirks.

The playground was crowded, but with sufficient space. So everything went smoothly, from shouts of “RHYS, DONT PUSH THE LITTLE GIRL” to “RHYS GO” when he had been sitting at the top of the slide for five minutes, a queue (not socially distanced!) formed behind him. He didn’t care!

It was all going extremely great until, “TOILET!”

I didn’t have the travel toilet with me, so feeling like we had been swinging and sliding for a sufficient length of time, I summoned the troops and we scooted up the hill to the amenities.

THESE TOILETS ARE LOCKED FOR YOUR OWN SAFETY said the sign.

Little do they know what is safe, when your six year old is screaming “TOILET” and does not do such things behind a bush!

There was only one option. “READY, STEADY, SCOOT” I shouted, and the boys pushed off from the ground and scooted like I have never seen before. The half mile race commenced. They swerved around the ankles of the slow walkers, dodged ducks and even did a few bunny hops over the not so smooth parts.

At the end of path, the transition into the car was record breaking, and the spinning of the car wheels, as we took off, made me feel young again.

But we didn’t make it!

The car seat was the worst hit, and Rhys struggled to accept the situation, crying “Jeans wet!” until I got him cleaned up and changed.

So I now have a key in the post on the way to me. A magic key that will open every disabled toilet in Britain.

Not sure about you, but that is a pretty magic key in my opinion.

🔑🔑🔑🔑🔑🔑🔑🔑🔑🔑🔑🔑

RADAR keys are available to people with disabilities and can be purchased from your local council, www.disability.co.uk or many other distributors.

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A Funny Face!

Autism is …

… your child never naturally engaging or joining in. It is when you try everything to get them involved, but realise you need to set your expectations lower. Set them at basement level, because then, the only way is up!

“Let’s do face painting” shouts my little girl, bringing me a old box of face-paint she has found in the toy box.
I open the box, it is slightly hardened, but after a few drops of water, we are ready for princess faces or super hero villains.

“Sit back” she says, holding up a blue coated paintbrush to my face. I close my eyes, firstly for relaxation, but quickly notice the need for safety!

It is a win-win situation. My little girl gets to paint, and I get a free facial. The paintbrush glides over my face and I feel tingles throughout my head. Lush! I could sit here all afternoon. Maybe when she is done with the painting we can move onto playing hairdresser, or she can run her dolls feet across my back in an imaginary royal parade.

These are the parenting moments I live for.

I am however pulled out of my relaxed state by laughter. Opening my eyes I am met with two big blue eyes and a mop of blonde hair. My daughter has been pushed to the side, while my son takes amusement from my newly painted face. Tbe crazy lines and marks are a comical addition to his laid back afternoon.

“Rhys, paint?” I ask, handing him a paintbrush coated with face paint. My expectations of my son joining in are still at rock bottom. Knowing from past experience that face painting is not something on his ‘fun’ agenda.

Holding out the paintbrush I am immediately proved wrong. He takes it in his hand, bringing it to my face and adding some new lines to my shocking appearance.

He then steps back and giggles.

I have no clue what I look like, but I would put on any funny costume every day to have this type of engagement and interaction.

My expectations have left the basement and are now on cloud 9. I have my son laughing and enjoying a family activity. Something impromptu without the planning, stress and complexity that so many other activities have had.

We keep trying every day, and every now and then we get these moments which come out of nowhere.

Don’t ever give up. Keep trying to engage with your child every day. It will sometimes feel like you are going backwards but one day you will see your child jump a hundred steps forward.

And it is these days we live for. Because they are the successes that give us the strength to keep on going.

😉😉😉😉😉😉☺😉😉

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Cakes Have Eggs!

‘Make salt dough decorations. Paint them and share a photo’

That was the home-schooling work for today!

I was full on dedicated to the task. I don’t think Rhys was as enthusiastic!

I measure out the ingredients – salt, flour and water. Placing them in separate containers ready for my little learner to pour them into the bowl.

Then I pause.

The whole setup looks very like cake baking. What do I call it when I ask Rhys? I can’t lie and say cakes, nothing like adding confusion to a situation.

I decide to be honest.

“Rhys, let’s make dough decorations” I say holding up the wooden spoon as a prop.

He happily walks with me to the kitchen. I have been clever (not an amateur at engaging with Rhys) and have ignored the Christmas decoration cutters, opting for numbers.

Numbers win every time.

“Rhys, pour flour” I say, helping him with the bowl. He pours it into the mixing bowl and lifts the wooden spoon to stir.
“Now salt” I add, handing him the second bowel.
He adds it to the mixture adding his own commentary, “Stir, stir, stir!”

I pour the water in and hope for a bit of sensory engagement, with finger kneading the dough. But as I mix Rhys immediately jumps down from the step.

“Rhys, come stir” I reiterate.
“Eggs!” He shouts back, pointing to the egg basket.
“No eggs. Dough Rhys”
“Eggs!”

I then look to the dough and back to my son’s face.

“No eggs, Rhys” I say once again.
He looks back at me, turns around and leaves.

I kneed the dough and start to cut out some numbers. Then I pause.

My son has buggered off, why am I doing his homework?

The then realise that I never actually turned on the oven. I must have somewhere deep down known the outcome of this.

I gather up the mixture and toss it in the food waste bin.

Screw that. Time for a cup of tea!

☕☕☕☕☕☕☕☕☕

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Cut the Plug!

In the 90s me and my sister watched a lot of telly. To the point my father rummaged in his toolbox and with a pair of electrical cutters, cut off the plug.

It definitely stopped our television obsession, for a couple of days at least. But all children learn from their parents actions, and we did the same as my father, by rummaging in the same tool box, and became self-educated in the area of electronics.

The telly was back once again, the cable however did get shorter and shorter over the years!

In the work-home schooling double act, over the past year of complexity, we have resorted to the television as a form of entertainment. But when our autistic son became engossed in a world of electronics and over-stimulation we knew it had to stop.

Nine months ago we banned the used of iPads in our house, after my son would wake us at 3am with a scream of “IPAD!!!!” We had lost him in a world of continuous two second movie clips that he would cycle through over and over again.

The iPad ban was hard. But it was only hard for three days. We then saw amazing things start to happen. He started to engage with us more and the meltdowns were virtually non-exsistent.

We then got into a bad cycle of him watching television episodes of  The Gruffalo  or Peppa Pig on repeat. Something we pushed to the bottom of the prioritisation pile. The need to survive during a pandemic meant that something needed to give, and telly became the babysitter of choice.

Mornings would start at 03:30am with us sending him downstairs to watch telly. It gave us grace to sleep a few extra hours untill the rest of the world woke up. Children’s telly only starts at 6am, so he would have a good two and a half hours of Netflix  to enjoy, often the same show repeated over and over again.

When you start a day in this way it tends to continue. Also we would sub consciously forget that he already had two and a half hours of the bright screen before we had emerged, only to keep it going. When we started to take a step back, we realised he was getting five hours of telly before he had even had breakfast!

Is the recommendation an hour a day?

The turning point was last Monday. A meltdown of epic proportions after a twelve hour television stint. At the time, I felt that I had no option. We both had to work and had been thrown into immediate isolation situation due to a positive contact with the virus. Our fall-back plan had been the telly.

On Tuesday me and my husband woke up and decided on a period of Cold Turkey. No telly! We didn’t get into specifics. There was no end date to the ban. There were no rules. We had both just had enough. We felt it was consuming our lives, and pulling our son into it, disconnecting him from the world.

A connection we had worked so hard to achieve.

Day one meant every toy and puzzle being spread across the floor. A catalogue of entertainment for my son to interact with.

And he did.

He played with toys he hadn’t touched in months. He grabbed his number cards and jumped around the room counting.

He did puzzles and read books. And while I chatted on a conference call we made chocolate cake.

He was loud, but he was learning through play.

He asked for “Televsion” and “Gruffalo” numerous times throughout the day, and searched constantly for the remote. But I held my ground.

On day 2 he brought his cup to me and said “Rhys thirsty” a phrase he has never used. A word of emotion stating his need to drink.

When his sister came home they ran around the foot stool together and he shouted “follow me”,  helping her up when she fell, and then starting the run once again.

He held my hands up to my eyes and said “Hide and seek, Mummy’s turn” and then crawled under the table awaiting my hunt.

By day 3 he was downstairs in the early hour happily playing. The word “television” not uttered.

He jumped on the trampoline in the rain, then rain inside and said “It’s raining” while covering his head with his hands. He has never said this before!

At lunch time, the cat tried to steal his ham sandwich, and he said “Shoo, shoo cat” pushing it away. Engaging with an animal he had no interest in the past.

In the evening I video called my parents to wish my mum a happy birthday. Rhys came to the screen and sang the first line of Happy Birthday. He has never spoken to them via video before. He has never sung happy birthday!

We are now on day 4, and we will continue from here.

I don’t believe we won’t turn the telly back on. I believe there is a place for it. There is a place for all technology in our lives.

There is however a need for balance. We didn’t have that balance a week ago.

I remember the feeling all those years ago when my father cut telly plug off. I remember the feeling of not knowing what to do. Not knowing how to entertain myself without the flashing box.

I know now why it was done. At least these days to implement the same change is not so dramatic, and I can just hide the remote.

Our house is a different place now. Our son is doing so many new things in the space of a few days, engaging with us and saying new words. Maybe it was all there below the surface all along, and the opportunity has allowed him now to share.

I encourage everyone to have a telly-free hour a day. None of our engagement was planned. You don’t need to create activities to replace the telly, just let it evolve itself.

If it is anything like we have experienced, you will agree that it is worth it!

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