Tag Archives: SEN

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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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!

πŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒ

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Key to the City!

After the day I had today, I am officially getting the key to the City. A blue key that will open doors for us.

Literally!

We are in tier 4, also known as, absolutely-no-where-to-go zone. We had to get out, so realising that every park was going to be heaving I just said “stuff it”, pulled on my mask and hoped the outdoor air would blow any new covid mutations in the opposite direction.

It went well.

The boys scooted, scaring innocent bystanders with their Tommy Hawk style swerves, making them jump the required two meters in distance. I sweated as I ran to try keep up, screaming “STOP!!!!” in the same amplification of voice and tone as shouting at a thief running off with my bag! Arms and legs waving like a frantic lady unable to control her brood.

I make a mental note that Ugg boots were not the right shoe for this type of occasion!

But this was the norm for us. There was no stress, just fresh air and stares from the public who are not use to our unique family quirks.

The playground was crowded, but with sufficient space. So everything went smoothly, from shouts of “RHYS, DONT PUSH THE LITTLE GIRL” to “RHYS GO” when he had been sitting at the top of the slide for five minutes, a queue (not socially distanced!) formed behind him. He didn’t care!

It was all going extremely great until, “TOILET!”

I didn’t have the travel toilet with me, so feeling like we had been swinging and sliding for a sufficient length of time, I summoned the troops and we scooted up the hill to the amenities.

THESE TOILETS ARE LOCKED FOR YOUR OWN SAFETY said the sign.

Little do they know what is safe, when your six year old is screaming “TOILET” and does not do such things behind a bush!

There was only one option. “READY, STEADY, SCOOT” I shouted, and the boys pushed off from the ground and scooted like I have never seen before. The half mile race commenced. They swerved around the ankles of the slow walkers, dodged ducks and even did a few bunny hops over the not so smooth parts.

At the end of path, the transition into the car was record breaking, and the spinning of the car wheels, as we took off, made me feel young again.

But we didn’t make it!

The car seat was the worst hit, and Rhys struggled to accept the situation, crying “Jeans wet!” until I got him cleaned up and changed.

So I now have a key in the post on the way to me. A magic key that will open every disabled toilet in Britain.

Not sure about you, but that is a pretty magic key in my opinion.

πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘

RADAR keys are available to people with disabilities and can be purchased from your local council, www.disability.co.uk or many other distributors.

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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!

πŸŽ„πŸŽ„πŸŽ„πŸŽ„πŸŽ„πŸŽ„

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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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