Tag Archives: disability

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

Discipline equals Freedom!

January 8, 2021 AMe 1 Comment

A lot of people will frown on my version of parenting. The version where the mantra “Discipline equals freedom” can be heard being chanted through the hallways. Along with questions of “Do you believe you earned it?” and “What do you think?”

Questions I direct at my child, instead of imposing my views on them.

It all started with a children’s book called ‘Way of the Warrior Kid by Jocko William, an ex-marine telling the story of how to be the best version of yourself. The concept of getting the tough stuff done to earn the rewards you define for yourself.

We have switched from telling my eldest what he should be doing, to asking him to plan what needs to be done.

When a request comes to have more television time or play Minecraft with his friends, I never say “no”, instead I ask “Have you earned it?”
To which the response is normally an immediate turn on his heals to complete his planned football practice or knock out a song on the keyboard.

We are not at this development point with my younger son Rhys yet, the challenges of autism and interaction make this a bit more difficult. But it is still something we have started to implement, and more importantly need to, in order to ensure structure, communication and predictability within his life.

At the moment my eldest is providing the best training ground for us as parents to practice the method. We are implementing it slowly for Rhys, where a reward of an episode of the Gruffalo requires Rhys to engage with a puzzle game, or a request for an ice-lolly requires him to do a bit of writing.

Discipline equals freedom, or more realistically reward!

Now there will be those haters out there. The ones who believe kids should be kids and not be ‘bribed’ to get what they should rightfully just be handed. But I believe that our role as parents is to guide our children and show them how to live their lives to the fullest, and achieve every dream they envisage.

My son’s autism means that structure is more important than ever. Teaching how to get things done, plan your day and get the tough stuff out of the way first, are life skills we should all be teaching and supporting our children with from a young age.

By learning from a young age that (self) discipline equals freedom, and they will be able to achieve the impossible.

And if it doesn’t work, just have a glass of gin!

How do you parent your kids? What is your method?

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.

🔡🔡🔡🔡🔡🔡🔡🔡🔡🔡🔡

Autism Life, Autism Shopping, Autism Strategy

A List of Battered Items!

January 2, 2021 AMe

Its busy. There are people! Which in these viral times can make things a little hairy! But I am winging it, I have a plan, which most probably will fizzle into a complete disaster within seconds – but it is always good to try.

“Rhys, shopping list” I say, handing him the laminated card which contains five pictures of items we need to get (although there is always going to be more, especially when you hit the miscellaneous isle of Lidl).

All is going well.

Rhys has decided to forgo his standard exercise routine of shuttle runs up and down the isles, and has resorted to the integrated trolley buggy-board option. With his feet secure on the little step, he holds onto the handle of the trolley, with the shopping list placed in front of him.

“Rhys apples” I say, coming to the first item on the list. I hand the bag to him and he lobs it into the trolley, letting them bruise themselves on landing.

I sigh and make a mental note to do the eggs myself in a few minutes!

Taking Rhys’ hand I help him move the apple picture to the right, off the list. He is not happy about it, and screams at me. It is that high pitch scream that penetrates your bones and lingers in the air. People turn expecting a decapitated body or horror scene. But everything is in its place, just a little boy being asked to move a picture!

We move on, people stop staring and turn back to their business.

“Rhys, pizza next” I say pointing to the little picture of a pizza. I lift four boxes from the fridge and hand them to him.

He throws them into the trolley, each box landing on top of the bruised apples, on some sort of scattered ensemble. I try to contain my urge to rearrange the trolley items, directing myself back to the task.

Once again I take Rhys’ hand and we move the pizza piece across.

He screams!

We move on.

As we walk I rearrange the trolley, and throw in a few extra items which Rhys’ pictures don’t include. I have kept Rhys’ list simple to ensure I keep his attention. Too many pictures would become overwhelming, especially as this is the first time doing this.

As we round the next isle, Rhys shouts, in a volume for everyone’s enjoyment, “ALL DONE!” I look at the list, he has removed the remaining three items across to the right had side.
“Car” he says.

“No Rhys, we need jam, grapes and ham” I say, placing the three pictures back to left of the card. He is reluctant but lets me compete my task.

As the jam is thrown onto the grapes and topped with a few packs of ham, we walk towards the checkout.

“How are you today?” Asks the cashier.

“Bloody fantastic” I answer.

And I am.

As I push my battered shopping out of the store, I am happy that we have shopped together using a list and a new form of engagement. The other shoppers may have seen things differently, but for me, this was progress.

Maybe next time the screams will be a little less audible, and the apples a little less bruised.

But for now, we will survive.

🍎🍕🍯🍇🍔

What are your shopping trips like?

Uncategorized

The 5am Lie In

December 30, 2020 AMe

I remember sitting in a horseshoe of chairs at our first National Autistic Society Early Bird course. It was the introductory session and we were going around the room giving an insight into each of our children.

Questions were asked to each couple in turn, with each question starting with someone different each time to allow us all to share.

“What is sleep like?” said the lady to my husband. He was first in the small group to answer the question.

“It’s hard” he said, “Rhys goes to sleep happily in the evenings at 7pm, but is then up really early around 04:30am”. We are constantly tired.

The question was then posed to the next couple who shared their struggles with sleep. How their son didn’t fall asleep until ten or eleven o’clock at night, and would then be up at about two am.

The answers from the group continued with responses including the need to lie down with their children for hours till they finally fell asleep, only to be up after a few hours.

As the responses were shared, me and my husband looked at each other from the corners of our eyes. Our sleep difficulties seamed miniscule to these other parents. We were always guaranteed an evening of peace, even though it was often an exhausted one due to being awake since four or four-thirty.

My husband held his head in his hands, embarrassed at his honesty of our son’s challenging sleep pattern. Wishing he could wind back the clock and not be the first to have answered that question.

We laugh about it now. We laugh because even though we are lucky with sleep (in the autism world) every couple of weeks Rhys does start the day at 2am. On those days we just trudge on and go to bed early.

I do however have a little laugh to myself when I overhear other parents sharing their early morning wakeups of six-thirty or having to wake their kids up who are still asleep at eight-thirty.

The thing is, you can take a child to their bed, but you can’t make them sleep (unless you have some magic melatonin!). I have however learnt over the years to just go with it. When Rhys wakes up he is ready to start the day. One day that may be five, other days it will be two in the morning!

Some days I snooze through the demand for the Gruffalo. Other days I get up and use the time to my advantage, because clocking up a few hours house work or a few chapters of my book puts me on the front foot for the day.

If I mope around in a half awake mess for the rest of the day, I don’t feel like the day has been totally wasted. I will have done my bit.

Other days we get lucky and Rhys sleeps late.

Oh how I love a lie in untill 05:30am 😁

🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌

A&Me