All posts by AMe

Autism Life

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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Autism Life

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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Autism Life

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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Autism Life

Timber!

The tree got the brunt of it!

Unfortunately it was one of those scenarios where he was in the wrong place at the wrong time. He didn’t do anything, except stand upright in his normal way and sparkle and shine his decorations. It was just bad luck that one second he was upright and the next he was face planting the carpet.

The Gruffalo was to blame. Eight repetitions of The Gruffalo to be exact! Probably seven times too many!

I know my error as soon as my words of “Last Go” and “All finished” had been ignored. The over stimulation of an electronic flashing screen had resulted in an immediate drop to the floor and a scream a deducible too high.

I clasped my hands over my ears in the same way my son does when it is too much to handle.

It was too much to handle!

I watched my son scream the words “Gruffalo, Gruffalo, Gruffalo” over and over again, knowing we had passed the line, and it was just a matter of waiting it out.

He started running back and forth towards an irrelevant destination. Frantic that the bright-image-presenting box was now a blank screen and his head remained full of want.

I sat there supporting his situation. Cuddles available for when he was ready to accept them, and friendly comforting words constantly coming from my mouth.

It happened so quickly.

I turned for a second and out of the corner of my eye I saw it evolve one frame at a time. The tree fell forward in slow motion, its tinsel in tact while the star and baubles clung on for dear life. Once it was over I looked to my son. Rhys stood with the evidence of two baubles in his hand. He had been caught in the act of destruction.

But a fallen tree does not bring back the Gruffalo, and in my head, I knew we just had to push past and let the meltdown subside. So I sat on the carpet repeating “Rhys, it is going to be ok” and offering cuddles, which just got constantly rejected.

It took an hour. But we both got through it. A lesson learnt. A new plan to be formulated going forward.

I made the wrong choice today. Day one of isolation was always going to be a steep learning curve, and trying to work full time, while occupying a six year old was always going to have its compromises. However six hours straight of the Gruffalo is not the solution.

I know that now.

Only nine days to go.

At least this time (unlike March) I have an end date in mind.

Suggestions and options for telly-free entertainment gladly accepted.

I think I need all the help I can get!

🎄🎄🎄🎄🎄🎄

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Autism Life

A Song and Dance with Santa!

We stand in a large room, the Christmas tunes are ringing out of a speaker in the corner. Rhys was happy to enter the building, and seems calm, but still clutches his ears with his hands, slightly anxious.

Santa visits are never on the agenda for our little boy. The lights and loud jingles, followed by a stranger in a bright suit, are not a recipe of joy for my little boy – a perfect sensory overload disaster! Previous attempts have seen complete abandonment, with tears and screaming due to it all being too much. Other children waiting excitedly in line, while I hold back the tears and dodge kicks and slaps from my son who is terrified of the complexity of the experience. An experience that every other child looks forward to, is something we have left off the past Christmas to-do lists.

But for some reason, here we are. Waiting our turn to see the big fat man. We are giving it another go.

If Rhys doesn’t want to, that is ok. We have learnt over the years to try new things and have realistic expectations of them not coming to fruition.

“Come on through, please” says the kind blonde haired lady, and I follow my husband as I hold Rhys’ hand.

The room is quiet and calm, with lights flickering in the corners. A massive fireplace is in the centre of the wall and the jolly, cookie loving chap is waiting for us in his chair.

“Ho, ho, ho. Hello Rhys” he says, as we notice some chairs placed socially distanced, two meters away from Santa.

As two of my children take their seats, smiling at the guy who is going to make all their dreams come true, my little Rhys shuttle runs back and forward across the room.

“Hello, Rhys” says Santa, from his seat by the fire.
Rhys stops and looks up through the bushy man’s beard. “Head, shoulders, knees and toes” he shouts, immediately commencing with the song by touching his head with his two hands.

Santa stands up, and Rhys grabs both his hands, lifting them upwards towards Santa’s head, prompting him to join in with the song. The sight is comical, Santa singing and copying the actions of my son, a sight so special to a family who does not do Santa. As the song comes to an end, Rhys then starts to spring around the little room, jumping forward with both feet in a sort of bunny hop.

“Ho ho, I can jump too!” says Santa, and as I stand on the side, I watch a full grown man with his belly full of jelly, mimic my little boy. My other two children join in, and it doesn’t take long before all six of us are bouncing around the room in a scenario no one has ever seen presented on any Christmas card!

Today demonstrated to me that it is people who make the difference. Rhys didn’t need Santa or fancy lights or presents. He just wanted someone to join him in his jumping and songs.

And today that person was Santa 🎅

Thank you to Caerphilly Miners Centre for the Community for hosting the big jolly chap. You have not only made one little boy’s Christmas, but you have made a mum’s Christmas magical too. Because there are no words to describe seeing my son interact with Santa in his very own way, but even better to have Santa so naturally interact back.

🎅🎅🎅🎅🎅🎅🎅🎅🎅🎅🎅

…and Santa, there will be a beer and mince pie waiting for you in a couple of weeks time.

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