Tag Archives: autism blog

A List of Battered Items!

Its busy. There are people! Which in these viral times can make things a little hairy! But I am winging it, I have a plan, which most probably will fizzle into a complete disaster within seconds – but it is always good to try.

“Rhys, shopping list” I say, handing him the laminated card which contains five pictures of items we need to get (although there is always going to be more, especially when you hit the miscellaneous isle of Lidl).

All is going well.

Rhys has decided to forgo his standard exercise routine of shuttle runs up and down the isles, and has resorted to the integrated trolley buggy-board option. With his feet secure on the little step, he holds onto the handle of the trolley, with the shopping list placed in front of him.

“Rhys apples” I say, coming to the first item on the list. I hand the bag to him and he lobs it into the trolley, letting them bruise themselves on landing.

I sigh and make a mental note to do the eggs myself in a few minutes!

Taking Rhys’ hand I help him move the apple picture to the right, off the list. He is not happy about it, and screams at me. It is that high pitch scream that penetrates your bones and lingers in the air. People turn expecting a decapitated body or horror scene. But everything is in its place, just a little boy being asked to move a picture!

The Shopping List

We move on, people stop staring and turn back to their business.

“Rhys, pizza next” I say pointing to the little picture of a pizza. I lift four boxes from the fridge and hand them to him.

He throws them into the trolley, each box landing on top of the bruised apples, on some sort of scattered ensemble. I try to contain my urge to rearrange the trolley items, directing myself back to the task.

Once again I take Rhys’ hand and we move the pizza piece across.

He screams!

We move on.

As we walk I rearrange the trolley, and throw in a few extra items which Rhys’ pictures don’t include. I have kept Rhys’ list simple to ensure I keep his attention. Too many pictures would become overwhelming, especially as this is the first time doing this.

As we round the next isle, Rhys shouts, in a volume for everyone’s enjoyment, “ALL DONE!” I look at the list, he has removed the remaining three items across to the right had side.
“Car” he says.

“No Rhys, we need jam, grapes and ham” I say, placing the three pictures back to left of the card. He is reluctant but lets me compete my task.

As the jam is thrown onto the grapes and topped with a few packs of ham, we walk towards the checkout.

“How are you today?” Asks the cashier.

“Bloody fantastic” I answer.

And I am.

As I push my battered shopping out of the store, I am happy that we have shopped together using a list and a new form of engagement. The other shoppers may have seen things differently, but for me, this was progress.

Maybe next time the screams will be a little less audible, and the apples a little less bruised.

But for now, we will survive.

πŸŽπŸ•πŸ―πŸ‡πŸ”

What are your shopping trips like?

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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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Counting to Speak

When your child doesn’t speak, all you dream of is to hear their voice. To listen to what they have to say. To have them answer a question you so desperately want to ask.

When Rhys was three he had ten words. Those words were one, two, three, four, five, six, seven, eight, nine and ten.

Numbers were his world, and still are.

He loved flashcards, and would pile them up, holding them in his hand, a support blanket, counting their contents constantly. He would find the fancy educational cards that marketing companies had devised as the best mathematical toolkit for young children. He would find playing cards, and would count the number of spades, hearts, clubs and diamonds. Puzzle pieces would be collected into a pile, or little wooden toy tiles, or coins from a toy till and then shifted through and their totals determined.

I would sit next to him and watch as his finger moved touching each image on a card, his mouth speaking the number as he counted. Once finished he would take the next card from the back of the pack, bring it to the front and start his count once again.

Over time he started to tolerate me counting along with him. It took time, but often he would scream back at my interruption to his game.

I managed over time to allow him to take control of my finger, and instead of him touching each picture on the card, he would guide my hand to each object and count.

I was in. I had opened the door to his world.

Months passed, and cards continued to be Rhys’ passion. But I knew I had to find a way to pull him away from his numbers and introduce more words. Numbers were not going to help him request items or move forward to becoming more independent. Words had to have context and meaning.

By the age of four, I was constantly counting along with him, and decided to find a way to introduce the words for the images on the cards.

“One shoe” I said one day as Rhys placed my finger on the first image of a shoe on his number five card. As he heard my words, which now included something additional from the norm, he kicked off. He screamed but retained my finger on the first shoe image, waiting for the word associated with it, the word “one”. The word all by itself.

But I refused to back down. I repeated “One shoe” and then forced my finger to the second image next to it immediately stating, “Two shoes”. I thought that if he realised that we were still counting, and that the process was still the same, he might accept the change.

Rhys was not happy with the change, but I persevered, and over time he started to realise that we were still counting. My plan started to work.

From that point onwards, I used numbers in everything. When we were in the park, I would crouch down to his level, point and say “Look Rhys, three ducks. One duck, two ducks, three ducks” When I was dragged to the cupboard by my hand for food, I once again would crouch down and say “Rhys, one rice cake or two rice cakes” I would never get a response, but new words were being added to our engagement.

It took time, a long time, years in fact, but it worked. We started to get new words. But more importantly, Rhys’ engagement increased, he was becoming aware of other things in his environment. The numbers interested him and allowed him to count real world objects, outside of his world of flashcards.

We limit the use of flashcards now. They tend to close him off from the world, but yesterday while I was clearing out a drawer, Rhys found some old number puzzle cards which had been hidden months ago. He immediately shuffled through them, like he did years ago, and started to count the images.

This morning he sat next to me and took my finger in the same way he had done a few years ago, and looking at me said, “Count with me” As he placed my finger on the first picture, I said “One”. He paused and without moving my finger he look up at me, waiting.

That’s when I realised that I had done it wrong. I had not counted the little picture of the Seahorse.

“One seahorse” I corrected.

Rhys then moved my finger to the next seahorse, and looked up and me, full eye contact – the strong engagement we had worked on for so many years. “Two seahorses” I responded, his reward for his eye contact.

We have come so far. A game that we played so long ago, came back to show us the progress we have made. And that progress has been gigantic.

Things take time. Find your child’s obsession and use it. Add words to their interest. Use their excitement as a tool for engagement.

And don’t ever give up!

I didn’t!

πŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒ

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In Its Place!

“Rhys look” I say pulling one of the baskets forward.

All his number toys are in one place, where he can just help himself. The other baskets have been categorised into different groups of cars, puzzles, art supplies and movement toys.

Rhys places his hands into the basket, taking out his skittles. Placing them on the surface in front of him, he lines them up from one to ten in ascending order.

“Ten green bottles, hanging on the wall…” he starts to sing, knocking each skittle to the floor as it ‘falls off the wall’.

After Christmas every year, I always get a burst of motivation. As the new year creeps in, I reassess and look at what new goals can be set as targets and where improvements can be made to what we are doing already.

Sorry, I am one of those annoying people!

I got a book this year called The Organised Mum Method(TOMM). And before you ask, it was not from my husband as a hint of my disorganisation, but a gift to myself of how to improve on what I already do. The reviews were great and if there is anything I like better in a book, it is a plan and a step by step process to follow.

So far I have decluttered a quarter of the house, and over the next few days, the entire house will be complete. Everything will have its place, and there will be a lot of rubbish and charity shop drop offs, but come the first of January, I will have a clean slate to start the year with.

Sectioned off to make things easier to find.

As Rhys finishes his song, he looks in the boxes once again and pulls out his number cards. His face is full of excitement, it is like his own little Christmas, where he finds the toys he loves, all in one place. He can now play with a variety of toys, including those that have been forgotten amongst an unorganised mess.

However I am confident that screams for number three or number seven will still happen. And every time he will either be sitting on it or it will be right next to him.

That’s just life.

🧸πŸͺ€πŸšƒπŸš˜πŸ§ΈπŸͺ€πŸšƒπŸš˜πŸ§ΈπŸͺ€πŸšƒπŸš˜

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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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