Tag Archives: disability

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!

šŸŽ„šŸŽ„šŸŽ„šŸŽ„šŸŽ„šŸŽ„

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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 šŸŽ…

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.

šŸŽ…šŸŽ…šŸŽ…šŸŽ…šŸŽ…šŸŽ…šŸŽ…šŸŽ…šŸŽ…šŸŽ…šŸŽ…

…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.

ā¤ā¤ā¤ā¤

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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 “Iā€™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.

šŸ¦·šŸ¦·šŸ¦·šŸ¦·šŸ¦·šŸ¦·šŸ¦·šŸ¦·šŸ¦·

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