Tag Archives: autism speech

Bail Me Out!

January 23, 2021 AMe

I was put in jail today.

Let me start at the beginning…

It didn’t go well from the very beginning, as I helped Rhys into the car for our weekly shopping trip. “Here’s the shopping list” I said, handing him his list of pictures in the same way I do every week. But he had other ideas and with a returned response of “No!” he threw the list on the car floor, followed by, “It fall down, it fall down!”

I had already started to accelerate the car forward, so I pulled to the side of the road, stretched over and picked up the list, handing it to him once again. He took it from my hold, but immediately discarded it back to the floor. It was a game I wasn’t going to play, so I continued forward along the road, coming to the supermarket with a child slightly less happy than when we left.

“Rhys shopping” I said opening the door and taking his hand. He walked, although reluctantly, towards the trolleys, and climbed up onto the heavy goods shelf which we use as a trolley buggy-board.

All seemed to be going to the standard plan, as I pushed the trolley and my son forwards into the shop. It was semi-busy (medium if you want a good gauge of crowd limits) as I pushed up the first isle of fruit and vegetables.

“Rhys, apples?” I said, holding out the apples and then pointing to the little apple picture on his list.

I gestured him to move it across to the red ‘done’ section in the way he does every week, but Rhys turned his back on me, and collapsed to the shop floor, a full on protest against the shopping trip.

Even ignoring social distancing, the space for my fellow shoppers to meander around him was non-existent, so I bent down and lifted him up, but only after he let his tongue make contact with the floor for a good corona tasting session!

As we moved down each isle, I turned the trip into an episode of Supermarket Sweep. The bread got a battering at the bottom of the trolley, with the eggs somehow staying intact throughout the experience. The new game show experience was made more complex with constant lifting of Rhys from the floor, or immediate trolley abandonment, as he ran down isles and through gaps in the supermarket shelving.

I soon agreed with myself that I had enough items to consolidate into some sort of eating experience, and headed to the tills, with Rhys in a fireman lift over my right shoulder, and my left arm manoeuvring a semi-full trolley down the final isle.

People stared, but I was beyond caring. This was an experience I was about to just write off, and all I had to do was get past those tills in front of me and into my car towards home.

The end of the experience was so close, but Mrs Old Lady in front of me, was taking her time trying to work out the complexity of contactless payments, only adding to Rhys’ urgency to get out-of-the-shop!

Rhys ran through the tills and lay horizontal across the floor, blocking the exit to anyone keen to leave. He kicked off his shoes, each one flinging across the space, leaving a middle aged man, unsure how to proceed past the situation.

“Just go round him!” I shouted, having totally given up on any shred of dignity I had left. The man pushed his trolley, making sure not to roll over a foot or stray leg, and I just continued to place my groceries on the belt, knowing the quicker I did it, the quicker this nightmare would be over.

“One, two, three” suddenly came through the tannoy system. A voice I vaguely recognised, but out of context I just couldn’t place. Then I turned my head and saw the origin of the sound. Rhys stood on a chair at the end of the tills, the announcement phone in his hand, and his mouth moving in speech.

I let my shopping and ran towards him, hoisting him into my arms, returning the handset and taking one big breath. All this had to be over soon!

I started to place the last few items into the trolley, with Rhys secured safely on my hip.

“One hundred and sixteen pounds, please?” asked the kind cashier, “would that be cash or card?”
I pulled out my card, and putting it into the slot, entered the code. The screen immediately beeped and a message appeared saying “Card declined”.

I stared at the screen. There was money in my account, what was happening. I tried a few more times, and each time I was rejected.

“Do you have another card Ms?”
“Yes, but I don’t know the pin” I replied, starting to panic not knowing the options to get out of the situation!

I was ushered to the side, Rhys still on my hip and my trolley of unpaid shopping beside me. “I’ll contact the bank” I said, and through the banking app got hold of a lovely lady called Lidy via the chat.

‘To ensure this is not a fraudulent claim, please send us a selfie of you holding a form of ID’ she said via the letters entered across my screen.

Then my phone screen dimmed, and a low battery message flashed before me.

“Crap!”

I cut-off Lidy (she probably wasn’t human anyway) and punched the only number I knew into my phone, hoping I had enough juice to allow me my one phone call.

“I need your card” I blurted out. Then the screen went blank.

I could feel the sweat accumulating on my skin as my nerves took hold. I thought about removing my coat to cool down, but then remembered that I was braless, and it was not a sight I could present to the world, even though I had taken them through enough already.

As I suddenly looked to where Rhys was, I was once again taken aback to see him seated at an empty till pushing on some buttons which must have done something, but I had no clue what! So I once again hoisted him onto my hip, and stood waiting in hope that my saviour would arrive.

It took ten minutes. A long ten minutes, but my husband walked in with a card in his hand. He looked at me and smiled.
“You ok?”
“Yes, I’m fine” I blurted.
He then looked at Rhys, and then back at me. “Well done. I dont think I would have had the strength to hold it all together as well as you do. Let’s go home”

Handing over his card to the shop manager, he paid my bail, and we left with just a smidgeon of my dignity still in tact.

I might try a different supermarket next week!

🛒🛒🛒🛒🛒🛒🛒🛒🛒🛒🛒

Autism Life

Spinning to Success!

January 18, 2021 AMe

At Rhys’ three year developmental check, the health visitor sat with an assortment of toys and papers in front of her.
“Rhys, can you stack the blocks?” she asked, placing three inch square blocks in front of him.

Rhys paid no attention to the lady and casually placed one block on top of the next with no effort. He managed eight blocks all sporadically aligned but perfectly balanced.

I didn’t gasp in amazement or shine with pride at his efforts. Rhys built block towers all day long. He hadn’t followed an instruction, he had just seen blocks in front of him, and done instinctively what he knew and loved.

He failed every other test that day. He failed because every test required Rhys to follow an instruction. A bundle of words that were just noise to Rhys from a strange object that sat in our living room.

From that day on, he failed every “test” because of the communication and engagement element that is vital to prove Rhys could do something. It was the foundation to everything in order to move forward.

I had a little boy who could not talk, but even more relevant was that he couldn’t understand or process language. A simple request to a three or even four year old of “pass me that toy” while gesturing to it with pointing, made no sense to Rhys. The physical action of identifying an object coupled with words, was foreign to him and just a jumble up of sounds and hand movements.

My strategy was to get him to understand a handful of words and associated actions. Things we could build on, and add to engagement opportunities.

I would place an object in his hand and say “Take to Daddy”, initially taking him by the hand and getting him to deliver the object. Through repetition, these physical prompts associated with words, started to form connections in his mind that made sense. He began to follow the commands without fail.

Things were slow, but we kept on powering through.

As I sat on the floor this evening reading to Rhys’ older brother, Rhys sat playing with a Lego helicopter. He spun the propellers around, enjoying the motion. However Lego is only a pile of blocks at the end of the day, and a vigorous spin will always end in a disastrous way.

“Mummy, help Rhys” he asked, holding the propeller out to me. The decapitated helicopter lay on its side about a meter away from me on the carpet.

“Rhys, get helicopter” I said, pointing to the red lego toy.
“Mummy help” responded Rhys, touching the propeller in my hand, reconfirming his request.
I tried again but with a different word. “Rhys, helicopter here” once again pointing to it.
“Mummy help, broken” Rhys replied, getting slightly frustrated.
I gave it one last try, ” Rhys, pass helicopter”

Something triggered in his mind and in the split second that he looked at me, I knew something was about to happen. To my amazement, he followed my finger and reached for the helicopter, bringing it to my open hand.

Something turned in my tummy in excitement. I placed the propeller on top of the red roof, gave it a test spin and held it out for Rhys. Of all the action words I used, none were part of Rhys’ mental dictionary, until I used the word “pass”. The word “pass” was what made a difference today. The word “pass” is going to open up so many more opportunities going forward.

I held out the helicopter to Rhys, but before I removed my grasp I asked, “What do you say?”
“Thank you” he replied.

I smiled and eased my hand from the toy.

Things will happen when you least expect them, and often it is just slight changes like a different word or action, that result in amazing things.

I was so proud of Rhys tonight, as I watched him return to spinning the toy. I was proud at how far he has come and the development barriers we both break down together.

🚁🚁🚁🚁🚁🚁🚁🚁🚁

Autism Life

A Mucus Worth a Second Look!

January 11, 2021 AMe

“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!”

🍰🥚🤢🍰🥚🤢🍰🥚🤢🍰🥚🤢

Autism Strategy, Speech

The Communication Pyramid

January 8, 2021 AMe

The one question that parents, with non-verbal children, always ask other parents is, “When did your child start to talk?”

I asked this question hundreds of times, to parents in my social circle, to professionals and in user community forums. Each time, I got a range of answers:
“Lots of children have speach delays”
“His older brother is probably speaking for him”
“My son didn’t talk and then just started speaking in sentences”

And the list went on. I kept reassuring myself that there was nothing wrong and that Rhys would speak in his own time.

After months of speach therapy and very slow progress, I was still extremely confused. I wanted to know the timelines for getting Rhys to talk, but it was all unknown and no one told me what to expect.

After loads of reading, I finally came across what I call “The Communication Pyramid”. As soon as I saw this, it all started to make sense.

Every person who learns to talk goes through different stages. We all start at the bottom of the pyramid being non-verbal and unaware of our surroundings. This was where Rhys was at 2 years old. Totally in his own world, zero sound and totally unengaged.

A child needs to move through all the levels of the pyramid to start communicating verbally. Some are quicker than others, and some (like Rhys) need the extra support to progress.

After seeing this image it made me realise that there were progress markers that would allow me to track against. Rhys was not going to wake up one morning and start speaking. He needed to move through the different stages.

In the case of Rhys, he was non-verbal at 2 years old. I distinctly remember that it took a lot of work on the first stage of the pyramid to even get him making a verbal sound. It was only when he was 3 years old that I heard a sound from him. Not a word but just a vocalisation. It took another year before his first word and then one more before we started to get a few two word phrases. We are still on the journey, but at least now I have something to track this against. It is a long road and not something that is going to happen over night.

The understanding and following of instruction is progressive. He started to understand certain instructions from 3 years old, and this is improving all the time.

I still cannot imagine asking Rhys “How was your day?” and getting a response. Every day after school I just need to assume it went well by the smile on his face.

I have no idea of any aspects of his day, or the names of any children in his class. I have to count on teachers letting me know of any issues, or his non verbal cues as to whether he is upset or unhappy.

I know it will come and it will be something I have waited years for. I am lucky in that Rhys is moving up the pyramid and through the continued hard work we all put in, he will reach the top in his own time. But we need to remember, you dont need to reach the top of the pyramid to communicate. It is a communication pyramid, where communication starts from the lowest layer even when words are not involved.

Autism Life, Autism Strategy

Changing It Up!

January 4, 2021 AMe

I lay out the word puzzles all in a row. The same way I always lay them out. The little wooden letters are scattered underneath, each letter face up, in the way it should be.

“Rhys, word puzzles” I say, and with luck he is next to me willing to participate. It took me ages in March to get him interested in the letters, but I persevered, and after a lot of chocolate, we had a system, a process of placing each letter in its slot and saying the word.

As Rhys chooses the first word, I let him find the ‘s’ and put it in its place. But as I turn around I see his new LCD writing screen on the floor, and a thought comes to mind.

As Rhys places the letters s, o, c and k into the puzzle, I write each letter on the little black screen mirroring his word formation.

“Rhys, sock” I say, pointing to the word I have written which corresponds with his wooden letters.

He is partially interested.

“Rhys, what letter next?” I ask, as I see the word duck as the next word in the sequence.
“D” he replies.

As he searches for the letter, I draw it on the blue tablet screen. “D” I say.

We continue with the process, Rhys slotting the letters into their place, while I write them down.

For now I just carry on in the background with my writing, as if it is purely for my own enjoyment!

For my son the key to change, is familiarity. Building on what he already knows and letting him get a sneak preview of what is to come. I don’t force him to write the letters or to take part in the change. I just casually implement a small change, all by myself to the side of him.

As we come to the last word, I continue with my prompting in the same way I have done all through the puzzle.
“What’s next, Rhys”
“S” he responds.

I pause but this time I don’t write the letter on my screen. A change to what I have been doing the whole way through the game. Two eyes look across towards me.

We wait.

Rhys then pushes my hand towards the LCD screen. He wants me to write the letter so he can do his part.

“S” I say, and draw the letter on the screen.
Rhys places the wooden piece in its place.

After doing the new game for the third time today, I pause for longer between letters, and await Rhys’ response. He waits and once again looks at me waiting for my action. But I wait, until he suddenly lifts the pen and writes the letter ‘i’ on the screen all by himself, then places the ‘i’ into the puzzle to continue the word ‘fish’

I am so proud.

Don’t feel you need to recreate the wheel or pull out something completely new.

Use a game, toy or activity your child already enjoys and add to it. If you open your mind, you will be able to create new ways of teaching letters, numbers, fine and gross motor skills.

Try just slotting in small changes to the current activity or do something along side.

Be patient and see what happens.

🔡🔡🔡🔡🔡🔡🔡🔡🔡🔡🔡

A&Me