Tag Archives: success

Autism Strategy, Speech

The Communication Pyramid

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.

The Communication Pyramid

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.

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Autism Life, Autism Strategy

Counting to Speak

When your child doesn’t speak, all you dream of is to hear their voice. To listen to what they have to say. To have them answer a question you so desperately want to ask.

When Rhys was three he had ten words. Those words were one, two, three, four, five, six, seven, eight, nine and ten.

Numbers were his world, and still are.

He loved flashcards, and would pile them up, holding them in his hand, a support blanket, counting their contents constantly. He would find the fancy educational cards that marketing companies had devised as the best mathematical toolkit for young children. He would find playing cards, and would count the number of spades, hearts, clubs and diamonds. Puzzle pieces would be collected into a pile, or little wooden toy tiles, or coins from a toy till and then shifted through and their totals determined.

I would sit next to him and watch as his finger moved touching each image on a card, his mouth speaking the number as he counted. Once finished he would take the next card from the back of the pack, bring it to the front and start his count once again.

Over time he started to tolerate me counting along with him. It took time, but often he would scream back at my interruption to his game.

I managed over time to allow him to take control of my finger, and instead of him touching each picture on the card, he would guide my hand to each object and count.

I was in. I had opened the door to his world.

Months passed, and cards continued to be Rhys’ passion. But I knew I had to find a way to pull him away from his numbers and introduce more words. Numbers were not going to help him request items or move forward to becoming more independent. Words had to have context and meaning.

By the age of four, I was constantly counting along with him, and decided to find a way to introduce the words for the images on the cards.

“One shoe” I said one day as Rhys placed my finger on the first image of a shoe on his number five card. As he heard my words, which now included something additional from the norm, he kicked off. He screamed but retained my finger on the first shoe image, waiting for the word associated with it, the word “one”. The word all by itself.

But I refused to back down. I repeated “One shoe” and then forced my finger to the second image next to it immediately stating, “Two shoes”. I thought that if he realised that we were still counting, and that the process was still the same, he might accept the change.

Rhys was not happy with the change, but I persevered, and over time he started to realise that we were still counting. My plan started to work.

From that point onwards, I used numbers in everything. When we were in the park, I would crouch down to his level, point and say “Look Rhys, three ducks. One duck, two ducks, three ducks” When I was dragged to the cupboard by my hand for food, I once again would crouch down and say “Rhys, one rice cake or two rice cakes” I would never get a response, but new words were being added to our engagement.

It took time, a long time, years in fact, but it worked. We started to get new words. But more importantly, Rhys’ engagement increased, he was becoming aware of other things in his environment. The numbers interested him and allowed him to count real world objects, outside of his world of flashcards.

We limit the use of flashcards now. They tend to close him off from the world, but yesterday while I was clearing out a drawer, Rhys found some old number puzzle cards which had been hidden months ago. He immediately shuffled through them, like he did years ago, and started to count the images.

This morning he sat next to me and took my finger in the same way he had done a few years ago, and looking at me said, “Count with me” As he placed my finger on the first picture, I said “One”. He paused and without moving my finger he look up at me, waiting.

That’s when I realised that I had done it wrong. I had not counted the little picture of the Seahorse.

“One seahorse” I corrected.

Rhys then moved my finger to the next seahorse, and looked up and me, full eye contact – the strong engagement we had worked on for so many years. “Two seahorses” I responded, his reward for his eye contact.

We have come so far. A game that we played so long ago, came back to show us the progress we have made. And that progress has been gigantic.

Things take time. Find your child’s obsession and use it. Add words to their interest. Use their excitement as a tool for engagement.

And don’t ever give up!

I didn’t!

🃏🃏🃏🃏🃏🃏🃏🃏🃏🃏🃏

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Autism Life

‘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

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

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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