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The 5am Lie In

I remember sitting in a horseshoe of chairs at our first National Autistic Society Early Bird course. It was the introductory session and we were going around the room giving an insight into each of our children.

Questions were asked to each couple in turn, with each question starting with someone different each time to allow us all to share.

“What is sleep like?” said the lady to my husband. He was first in the small group to answer the question.

“It’s hard” he said, “Rhys goes to sleep happily in the evenings at 7pm, but is then up really early around 04:30am”. We are constantly tired.

The question was then posed to the next couple who shared their struggles with sleep. How their son didn’t fall asleep until ten or eleven o’clock at night, and would then be up at about two am.

The answers from the group continued with responses including the need to lie down with their children for hours till they finally fell asleep, only to be up after a few hours.

As the responses were shared, me and my husband looked at each other from the corners of our eyes. Our sleep difficulties seamed miniscule to these other parents. We were always guaranteed an evening of peace, even though it was often an exhausted one due to being awake since four or four-thirty.

My husband held his head in his hands, embarrassed at his honesty of our son’s challenging sleep pattern. Wishing he could wind back the clock and not be the first to have answered that question.

We laugh about it now. We laugh because even though we are lucky with sleep (in the autism world) every couple of weeks Rhys does start the day at 2am. On those days we just trudge on and go to bed early.

I do however have a little laugh to myself when I overhear other parents sharing their early morning wakeups of six-thirty or having to wake their kids up who are still asleep at eight-thirty.

The thing is, you can take a child to their bed, but you can’t make them sleep (unless you have some magic melatonin!). I have however learnt over the years to just go with it. When Rhys wakes up he is ready to start the day. One day that may be five, other days it will be two in the morning!

Some days I snooze through the demand for the Gruffalo. Other days I get up and use the time to my advantage, because clocking up a few hours house work or a few chapters of my book puts me on the front foot for the day.

If I mope around in a half awake mess for the rest of the day, I don’t feel like the day has been totally wasted. I will have done my bit.

Other days we get lucky and Rhys sleeps late.

Oh how I love a lie in untill 05:30am 😁

πŸ›ŒπŸ›ŒπŸ›ŒπŸ›ŒπŸ›ŒπŸ›ŒπŸ›ŒπŸ›ŒπŸ›ŒπŸ›ŒπŸ›Œ

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‘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.

πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘

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.

πŸ˜‰πŸ˜‰πŸ˜‰πŸ˜‰πŸ˜‰πŸ˜‰β˜ΊπŸ˜‰πŸ˜‰

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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!

β˜•β˜•β˜•β˜•β˜•β˜•β˜•β˜•β˜•

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