Tag Archives: Autism

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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Autism Strategy, Makaton

Makaton: Good Morning

The pain and illness that has consumed our house for the last forty-eight hours has passed. After a good night’s sleep, I stretch my arms upwards and breathe in the new day.

I pick up my phone and focus on a new goal. At Rhys’ annual review a few days ago, we discussed the use of Makaton and how visual signs are a good method of aiding verbal understanding. Rhys is a visual learner, so I was keen to get started on a way to enhance our communication and develop his understanding.

‘Good Morning’, seamed like a good start to my Makaton journey. I type it into Google and watch a lady demonstrate the sign. It is a simple thumbs up and swoop across the shoulders. “I’ve got this” I say to myself, holding up my thumb and swooping my hand from one shoulder to another, in confirmation of knowing the sign.

I know that Rhys is one step ahead of me in learning Makaton, after his experience of it in school. So I have a positive feeling that this is going to be a good move forward for us.

I can hear the chatter of Rhys next door as he occupies himself with his numbers. He must have been up for about an hour, but is happily entertained, and for once has not pounced on top of me in the commencement of a game of hide and seek.

Walking into his room, I crouch down in front of him. Previous multiple attempts of prompting for a “Good morning” have been semi successful, but never clear or freely spoken. So I am excited to see how this works out.

Looking into Rhys eyes, I get his attention. “Good Morning” I say, holding my thumb up and passing my hand across my chest, in sync with the two words as I speak them.

“Good Morning” replies Rhys in words more clearly than I have ever heard him say. It is spontaneous, with no prompting. A response I would have received from one of my friends hearing my greeting.

What a great start to the morning. It is definitely going to be a good one. I immediately run back to my bedroom and shake awake my husband. I explain the makaton and Rhys’ response.

“What’s the action” he asks. I show him the sign, and he mimicks me, confirming it back to himself.

Kneeling down by Rhys, he looks at him and holding up his thumb says, “Good Morning,” followed with the swoop across his chest.

“Good Morning” says Rhys.

It could have been coincidence, or maybe the Makaton had helped, prompting the clear communication. It doesn’t matter. Rhys communicated back to us without prompting.

I am excited for this new goal. An additional way of building communication with my son.

For anyone wanting to come on the Makaton journey with us, I want to introduce “Makaton with Jessie”. Rhys’ little sister who is joining in with the plan. Because as Jessie puts it, “We are a team!”

I think she is doing a pretty good job. What do you think?

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Autism Life

A Pain That Cannot Be Communicated!

I remember a little girl looking up at her mum with sad eyes and saying, “Mummy, I have a headache in my tummy” her hands hugging her belly in pain.

She didn’t have the words or knowledge to express her pain, so she did it in the only way she knew how.

Fifteen years ago, I lay curled up on a hospital bed in pain, a doctor came up to me and asked me my symptoms. Looking up at him through the slits in my eyes, I mumbled, “I don’t know.” The pain was so great that it emanated throughout my body disguising its source.

Illness comes in many forms and even when you have the ability to express verbally what is wrong, we often cannot find the words or process the detail to do so.

And that’s for those of us who can talk.

So when I picked up Rhys from school this morning, the absence of language and knowledge to express his pain, was only presented with tears and the words, “Sad”.

Rhys is either happy or sad.

Just one or the other. He doesn’t kmow any level in-between.

So I become a detective and look for the non-verbal signs. A feel of his forehead to check for temperature, a look at the colour in his face, the sound of a cough or a sniffle, and the alertness of his character.

There is no temperature, no cough, no sniffles. But he holds his ears and cries, with the words “sad” verbalised between breathes.

He wont eat except for soft food like his white bread sandwich – his crackers and orange remaining untouched.

When we get home, he perks up. The quiet atmosphere is a blessing to his torment. But a flash of the calpol syringe sets him off again. The request to bring something to his mouth brings distress.

I think I have identified the culprit of his pain. His teeth. The new big boy teeth pushing through his tender gums.

But I have been wrong before. I can only guess. I can only make sense of what I see. Because my little boy cannot tell me.

So we will play it safe. Give him another day’s rest and fingers crossed he is ok.

This is where things are tough. Tough for both sides, the struggle to communicate, and the challenge to help.

Forty-eight more hours of cuddles is all I have to offer…

… and sneaky calpol in his squash.

Get well soon little buddy.

❤❤❤❤

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Autism Life

A Cage Fighter or Just a Little Boy?

We are at that stage in my son’s life. That phase where he looks more like a cage fighter than my little blonde haired cutie.

He parts his lips to smile at me, but I am met with a gappy mouth. The loss of his top and bottom two teeth in the space of two weeks, has left him looking like (well if he was ten years older) someone you would not want to meet in a dark alley!

The first tooth loss came and went, with no fuss and was a pretty much a non-event. But things have changed.

Rhys stood this evening and watched his reflection in the window. The massive gap in his teeth reflecting back at him. He continued to babble, phrases from Hey Duggee and Peppa Pig flowing from his mouth in his own little muddled up conversation. He watched his mouth move and the gap flashing back at him from the temporary mirror. As he spoke, the words were interrupted with sobs and gasps for air. Tears flowed down his cheeks, and turning his face to me he whimpered “I’m sad”.

“Why you sad, Rhys?” I asked, trying to take him in my arms, but the comfort wasn’t accepted, and he pulled away, turning to communicate his pain to me with his hands, the words unable to roll off his tongue.

Then placing his fingers to my mouth, he tried to pull at my teeth. His tears rolling further down his face.

“Rhys, teeth will come back” I said, realising his confusion at the change that had happened so quickly. I looked to the table and saw his uneaten dinner. The feeling of biting into his crackers had put him off his food. Lunch lay untouched in the kitchen from earlier, a little boy who couldn’t face the strange sense in his mouth continued looking at me with confusion.

Once Rhys had realised that I understood why he was sad, he let me take him in my arms. He let me cuddle him, while his tears continued to fall.

To my other children the joy of a little fairy bringing a gold coin, in exchange for their teeth, is an event that they will wiggle every second of the day to bring closer. For Rhys, the exchange of money for his pearly whites, is a bizarre concept he is unable to comprehend. To Rhys he has no teeth where there used to be, and that is upsetting.

Rhys’ bottom teeth are coming through, his top gap is just gums. It is a change to the norm, and it will take some time to adapt to.

For now, cuddles are unlimited, while we step through another change in this scary thing called life!

I now just need to go and pull on my fairy wings and grab a bag of chocolate coins. Because chocolate makes everyone a little bit brighter.

🦷🦷🦷🦷🦷🦷🦷🦷🦷

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Autism Food, Autism Life

Move Over Mr Blumenthal!

The chore that every parent undertakes daily – the timely execution of the evening meal. Bring it on!

It always starts with excitement and the feeling of pride. The dream of it only taking fifteen minutes, in line with Jamie’s expectations, but really ending up with a few f’ing hells and fist throwing, in line with Gordon.

Either way, all the legitimate research has clearly demonstrated that the amount of effort and time you contribute to a child’s dinner, is equally proportionate to the speed and accuracy of aim when it is chucked directly back at you!

I failed to read the research!

I decided to coordinate a meal of bangers and mash. It wasn’t fancy, even the sausages were just standard pork, and the peas were good old Lidl’s own – frozen not fresh! I was however proud. Proud that I was making an effort in creating something as a result of my own labour, with more effort than just plying open a cardboard box of beige – which had been extremely successful last night. In hindsight it makes me wonder why I have deviated from the norm!

The smell of sausages emanate from the oven, as I whip up the potatoes with butter into a frothy consistency. Check me out Nigella!

I dish up one plate in the standard arrangement of mash, with sausages on top, peas on the side and all drizzled with gravy. I even make one of the sausages stand slightly erect – purely for my own giggle factor!

It looks amazing, a perfect home cooked meal. My ego is boosted more when my eldest happily accepts it, picking off the from the plate while in his travels back to the daily dose of YouTube. But then I look at the second empty plate and think for a few seconds. My younger son, Rhys, is autistic, and although sausages are a winner – potatoes, peas and gravy are not part of his dietary portfolio.

But there is one thing he does love – cake!

Going the extra mile, I get creative. With all the Heston imagination I can muster, I grab a cupcake case and start to spoon some mash into the green cup. Taking one pea at a time, I add them like sprinkles and finish with a little icing gravy.

I stand back and nod in amazement at my work.

Placing the mash ‘cake’ next to the ‘guaranteed to be consumed’ sausages, I take a deep breath of confidence and proceed to the front room, depositing the meal with pride in front of my son.

“Rhys, dinner” I say, and then pointing to the cake, I add “look cake”

Standing back I watch my son pick up the cupcake in his hands. It’s a bit squishy in texture, but he picks off one of the green sprinkles and places it in his mouth.

I mentally jump for joy as I watch my son, who only consumes a handful of items, eat something new. I have done it, I have found the secret method of new food introduction.

I might write a recipe book detailing different ways to present food. I will call it ‘The Food Disguise”!

But I am pulled from my aspirational dreams with the feeling of mush being forced into my hand. The handful of green is then increased as Rhys proceeds to take each one of the other green sprinkles from the cake and place them in the palm of my hand.

While I stand with a handful of peas, I grasp every ounce of hope that the potato will find its way into the taste test. My eyes wide with the urge to not miss the moment, I see Rhys lift the cake to his mouth and lick the soft fluffy contents.

I hold my breath and then exhale every piece of hope I had. My future recipe book lying crumpled in a virtual heap, a review on the back reading “With every pea comes a handful of mash!’

Rhys holds out his tongue as if it has been coated with poison. Taking the palm of his hand he wipes the potato from his tongue and then immediately discards it on his t-shirt. The cupcake case is tossed to the floor, landing in the scientifically correct way of potato side down!

Going back to the kitchen, I tear open a box of pizza. The round beige meal deposited onto the middle tray of the oven and the knob ramped up to 200°c.

“Ok Google, ten minute timer” I say, and ditching my chefs hat, realising that I have been defeated. There is only one option. To leave the virtual assistant to take the reins.

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