Tag Archives: meltdowns

Autism Life, Popular Post

We Are All A Little Autistic!

“We are all on the spectrum”
“We are all a little autistic”
“I get scared in strange places too”
“I am not really a social person”

I have so much to say when I hear those words. I have so much to share and explain.

I have so much awareness to raise on a condition that is part of our lives, part of my son.

I want to respond to those comments. I want to let people know what autism is.

Autism is not feeing anxious about new surroundings, or a child crying because they don’t want to leave their mum. Autism is the strange sound that reverberates through the body, the strange smell of the floorboards, the overpowering vibrations of the crowds running across the wood panel floors. It’s the overwhelming sensory input that means it is impossible to enter a room no matter what reassurance is given.

Autism is working through multiple scenarios in your head, dissecting days out that have ended because it rained that day or I put wellies on my son’s feet instead of trainers.

Autism is never having a play date, because your son doesn’t have any friends.

Autism is when your son is invited to a birthday party, but you have to decline because you know it is a magic show where the magician uses a PA system that cannot be tolerated by your son’s hypersensitive hearing. You make some excuse about a family event, but in reality you just sit at home because you don’t have the words to explain. The birthday invites then stop coming, because you are seen as a parent who never takes part.

Autism is answering for your child because you don’t know how to explain why they can’t answer for themselves.

Autism is answering to a stranger when they ask your son “Hello, what is your name?” because he cannot talk or understand the question. You don’t have the strength to try explain the complexity of the situation, because the stranger is just the cashier in Morrisons who you will never see again.

Autism is taking your children to the zoo, only to have to return to the car after ten minutes because your son cannot cope with the smells of the unknown location. You let your other children grab a treat in the gift shop while you beg for a refund or just forfit the £60 entrance charge. You cry because your autistic son’s siblings have looked forward to this day, but lose out because their brother can’t cope.

Autism is sitting on the supermarket floor, while your son has a meltdown. Shoppers pass you by, looking at you and wondering why you just don’t discipline your child. But you know you just need to sit and wait for the pain to subside. Being there is the only way through it.

Autism is taking your six year old son to swimming lessons, but still being in the parent and toddler class because that means you can be in the pool with him. Parents of two year olds watch you wondering why he hasn’t progressed. You ignore it, you have grown a thick skin that simple stares cannot penetrate.

Autism is planning everything to the most minute detail. You dissect situations that fail and try again and again. Scenarios and plans are so engrained in your head that you become an expert and execute them like clockwork.

Autism is knowing words are not the only way to communicate. You crouch down to your sons eye level and hold up pictures and schedules. Ignoring the onlookers, focusing on the key communication strategy that works.

Autism is panicking when the new taxi to school has a sliding door instead of a swing open door. A change that can set back your son’s education. A situation you have not planned for or envisaged, and stand with waited breath and fingers crossed in the hope it will all be ok.

Autism is hard, but autism is also pride. Pride at what your child can achieve.

Autism is hard, and difficult to explain, but autism is also pride. Pride that barriers can be broken down, and goals exceeded. Where new ways of living can be found, and a strength you never knew existed breaks through from nowhere.

Autism is shock at the things your child can do, beyond any ability of your own. The photographic memory, the association of numbers or the high speed rotation without any dizziness in sight.

So before you comment or undermine the challenges that autistics and those supporting them face, ask a question instead. Ask for information, ask how you can help, or just smile and say, “You are doing ok mum, you are doing great”.

Because autism is not a tut, or a mutter of bad parenting. Autism is life through a different set of glasses, a life we are trying to navigate through where the maps don’t yet exist and rulebooks are still being written.

We are still creating a world where we can all belong, and we need all kinds of minds to achieve that!

🌏🌏🌏🌏🌏🌏🌏🌏🌏🌏

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When Simple is Hard

“You get the coats, boots and hats ready, and I will do the toilet trips” I said. It was the standard pre-walk preparation we executed every week.

As we all bustled in the small cramped hallway at the bottom of the stairs, with coats consuming arms and hats bobbing up and down as the pompoms got excited for their daily trip out, one little boy was missing.

I looked around the doorway to see my son, Rhys sitting by the window with his book in his hand.
“Rhys, walk then swings” I said as I walked up to him.

“NO!” he screamed back at me, and kicked out, turning into a stiff board that would not be moved.

I immediately pulled out my phone from my back jean pocket, knowing I had to move quickly before anything escalated to a point of no return. I searched frantically through my picture app for what I wanted, but my heart was beating in my stomach. I hoped I had the right images. Images I hadn’t used in years, for a routine we had got so use to executing.

Rhys’ screams and frustration got louder as I finally found a picture of him walking through the forest and a picture of the park. I pulled the two pictures into a sequence, and held them up to him. “Walk then swings” I said, trying to keep calm and consistent with my tone, while the stress built up in my gut.

Rhys reluctantly acknowledged me and I was able to convince him out of the front room towards the front door. The rest of the family stood congregated and patiently waiting for us as I bent down to place each one of Rhys’ wellies on his feet. I was so nervous this would not go to plan, so I moved carefully and gently to try and ensure we were able to move forward and get out for the weekly walk. I held out Rhys’ coat, and he pushed each of his arms into their slots, leaving me to pull the zip up over his body.

I took a deep breath, and placed my hand on the front door, opening it and feeling the cold winter air rush past my bare face. Things happened in slowmotion at first and then it was as if someone had pushed the fastforward on our lives.

Rhys’ hand lifted upwards, grabbed the zip of his coat and pulled. His arms were out of the sleeves within seconds and he ran to the back room kicking out his feet in an attempt to eject the boots from his limbs.

I felt deflated. I felt like we had gone back in time by three years, to a time when this was a daily occurrence. A time when we couldn’t go anywhere. A time when I couldn’t cope.

“Do you want to stay here, and I will take these two?” said Justin, nodding to Jessie and Ewan who stood suited and booted on either side of him.

“Yes, you go” I said.

As half my family left and the door closed behind them, I felt my heart rip apart. We were divided once again, just like we had been years ago when we couldn’t take Rhys anywhere. Where places and activities were too much to cope with.

I walked into the back room. Rhys was sitting on the single sofa, his wellies still on his feet unable to be removed by his small hands. I knelt down by him and pulled each welly from its foot.

“Rhys, swings?” I asked, in hope that I could at least get him out the house, even if it still meant no family walk and just a trip to the playground.

Rhys just sat staring at me.

I grabbed my phone again and quickly googled ‘swings’, and held up a picture of a child on a swing. The image filled the screen of my phone.

No response.

I left the room and found his trainers. Returning to the room, I held up the picture on my phone once again. “Rhys, swings?” I said again, and then held up his trainers. My hope was fading so quickly, and I just wanted to collapse down in tears. Our life was so challenging, where a simple walk was just an impossible task.

But I held strong. I was desperate to try and find a way.

As I continued to show him the swing picture and meet him at his eye level, he suddenly let me slowly place each trainer on his foot, and with a “one, two, three” I lifted him to him to his feet.

“Swings, Rhys?” I asked again.
“Swings!” suddenly came a response.

I carefully put on his coat, my stomach in knots as the stress bringing a taste of sick into my throat,but we somehow managed to walk out the front door. At the end of the driveway, I went to turn left to take us up to the park, but Rhys stopped. “This way!” he said, pulling my hand to the right.

“Ok” I replied and let him take the lead, while I dug into my coat for my phone.

“Justin, wait for us, we are coming!” I shouted as my husband answered my call.

Five minutes later we had caught up with the rest of our family, and I collapsed into my husband’s arms, my body drained of energy, the stress and exertion of effort to get to where we were.

“I don’t know how you did it, but well done” he said, as he slowly wiped something out of his eye. We stood in the field for a few minutes as I got some of my strength back, then we walked forward. We walked onwards as a family, together again.

“I can’t go back to where we were” I said, “we have worked so hard at this”
“We definitely have” my husband responded ” We definitely have.”

As we walked forward, I watched Rhys run ahead. He must have felt as drained as me, but I knew a walk and some fresh air was what we all needed. It had been challenging, but our family walk was all we had at the moment. The only thing to keep us moving forward.

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A Mucus Worth a Second Look!

“He’s been sick!” came a scream from the hallway, “OMG! Come help it is everywhere!”

I jump up and run out of the lounge where I am greeted with my husband and a headless Rhys.
“It’s all over his hoody, help me get it off!”

The top has got wedged on Rhys’ head, the hood part gathered up around his neck, closing any gap which will allow us to get it off!

Rhys stands waving his arms around in his temporary blinded state, “Stuck, stuck” he shouts in a voice which is slowly moving to a tone of fear and potentially will end in only one outcome – one of meltdown.

“Watch his ears!” I shout – unsure why shouting is necessary, but seems to feel apt in these sort of situations. I push my fingers between Rhys’ neck and the orange material of the top, easing it over the one side of his head, but it pulls the other side tighter where my husband is attempting to do the same thing.

“We need to communicate!” he shouts, agreeing that panic shouting is necessary. Rhys adds his continuous screams for freedom, claustrophobia setting in.

We look at each other, a plan formed without the need for words. After a bit of agreed coordinated communication and team work, we somehow contort Rhys into some sort of gymnastic position and relieve him from his temporary restraint.

Rhys stands in the hallway, his bare arms poking out of the t-shirt, his little face one of confusion after the ordeal he has just had to be part of.

“Where was he sick?” I ask, still in a volume a bit to high for the situation, but my heart rate is still slightly elevated from the rouge hoody incident.

“There” says my husband pointing to the kitchen floor, while gagging, his mouth open and a paleness overtaking his face. (And he calls himself a man!)

The floor has that mucus type sick which is normally produced when the stomach has nothing left to throw at you.

I take a deep breathe and grab some kitchen roll and spray while Rhys gets a wet wipe and check over by his father.

As our panicked voices subside and we get on with our assigned roles, a little voice, which has been quiet for the last ten minutes, breaks through the silence.
“Make cakes?” it says. Rhys’ face has a questioning look, and still in a slightly confused state.

I look up bewildered, and slightly thankful that my son is feeling ok enough to engage with us.

Then my husband laughs, a little to loudly, and stops consoling his recently vomiting son.

“What’s so funny?” I say, while on my knees, spray in hand trying to return the floor to its recently polished, clean state.

“He wanted to make cakes!” confirms my husband, and then shows me the frying pan from the morning’s breakfast, containing a broken egg amongst some egg shells.

I look at the manky, used kitchen towel in my hand, small pieces of egg shell are visible amongst the mucus.

“I guess we are making cakes!” I say.

“Chocolate cake!” says Rhys.

“OK, chocolate cake!”

🍰🥚🤢🍰🥚🤢🍰🥚🤢🍰🥚🤢

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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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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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