Category Archives: Autism Strategy

I’m Never on the Bench – I’m Always in the Game

I always envied those parents who sat and chatted on the side at soft play centers, parks, or poolsides. They would catch up on social gossip or chill with the other parents, getting a moment to relax and be themselves.

I have never been one of those people. Well, at least since my children could walk!

When your child will leave a venue, just because they are done. Or go to the toilet at the other end of the facility, because they need to go. Never telling you their intent or agenda, I am always left with a feeling in my gut that no words can describe.

That feeling that your child is missing.

When your child doesn’t understand the concept of waiting or personal space, and cannot advocate for their challenges because words are not part of their repertoire, that’s why I am there. That’s why I am at my son’s side, to be his voice, to show him the direction, to make sure he is safe.

His autism brings challenges which I am there to help him overcome.

It means I am always active.

It means I am always involved.

It means I take part in things I may just be a bit old to enjoy, but get the thrill of childhood memories and enjoy my son’s smile at being his partner in crime.

I have crawled through soft play tunnels and got stuck in the clothes wringers when there was no other way to turn without taking my eyes off my teammate. I have sped down water slides, gripping my son with my legs as he sat in front of me on a blow-up tube. His screams of excitement as he shouts, “Hold on tight” and “Weeeeeee” – statements mimicked from me when I was trying to entice excitement and fun.

Then there are activities I have taken part in on my own. The need to understand the process, the feel, and the method, to allow me to construct a strategy to get my son involved next time or years in the future. I have scaled climbing walls and ridden bikes down steep inclines and taken on physical sports like judo, letting fully grown men throw me over their shoulders and end in their hysterics at my ear-piercing screams.

I have had my limits, but they are beyond the standard parent’s limit. I have taken part to let my son be included. Included for now and for the creation of options in the future.

I am not the parent who sits on the bench.

I am not the parent who drinks tea and talks about the latest series release, because to be honest, my television watching mostly consists of Peppa Pig and Numberblocks. I know nothing about the end of Breaking Bad or which housewife has had the biggest crisis!

But I do know that I am doing my best for my son, and to be honest, having a whale of a time doing new stuff myself.

So get up off the bench and live life. Because living brings opportunity, and opportunity creates memories you will treasure forever.

Our children can experience everything they want, sometimes they just need a little bit of support, encouragement and a teammate at their side

TOTS100 - UK Parent Blogs
TOTS100

Autism Communication: Using PECS to Comment is the Next Big Step!

Imagine asking your child every day how their day was, or asking what they got up to or who they played with, but never getting an answer?

Not because they are being an ass of a kid and not wanting to give an answer, but because they can’t.

That’s why I sat speechless when the lady with the blonde hair and blue dress showed me her goal for my son.

She spoke us through the plan to get Rhys to eventually talk about a picture. To use verbs and explain what he was seeing. The ability to take a bunch of language and put it together in a sentence that was more than just a request for a treat.

The plan didn’t involve words or verbal communication. At least initially. It involved pictures and communication in a whole new way.

So tomorrow we are going to start building on the foundations we have already set. We are going to work on the verb “I see”.

I am going to work with Rhys on selecting the images on his communication device to comment on a picture. To tell me what he sees.

It sounds simple, but I know that it is going to be a hell of a journey.

A journey for both of us.

So I have a stash of chocolate buttons as a reward …

… and a bottle of vino for me.

Anyone else been on this journey? Send some tips this way.

Visit our strategy page to read about implementing PECS as a communication aid for your child.

Autism Sunglasses: Fighting the Glare or Hiding the Stare?

Sunglasses!

They were not one of the suggestions or points the Peadiatrician referred to, four years ago, when we all sat around the table.

The words Autism Spectrum Disorder were said and the diagnosis finalised. The answer to my son’s differences was given a name, and I was meant to feel better about it. But the words were not what mattered to me. What mattered was the support it would give him, to be himself, in a world that made it hard to.

“We need to put in place the strategies, the scaffolding, to support Rhys and allow him to gain his independence” were the words spoken by the Peadiatrician, once the diagnosis had been confirmed by a inking on her lined pad.

And so I learnt the strategies and I started to build the metaphoric scaffolding.

I listened to the professionals, and Rhys met milestones in his own way.

But no one mentioned sunglasses.

It happened by accident. The way a lot of successes have happened on my parenting journey. The push to have one last go, or just winging it at times in hope for a breakthrough.

When I placed sunglasses on my son’s face one hot, sunny, bright day at the age of four, a calmness overcame him.

It was a few months later when I spoke to a woman who was autistic, and it all made sense.

The bright summer light was too much for my son, and the glasses were doing their job in dulling it down. A sensory overload that diminished instantly through the shades.

But even more interesting, she told me how sunglasses provided her with a comfort. A safety barrier from the expected social eye contact. She could be herself behind them.

So every summer the sunglasses come out of the drawer and are placed on my son’s ears. The sensory tension from the eyewear is tolerable, because of the advantages they give him.

So remember. When you hear strategies and tools for coping in this scary world. It is often the things you least expect.

We see ear defenders and fidget toys, but often the coolest gadget of all is the one that is most needed…

… a pair of sunnies to frame a blonde mop of hair!

#autism

Autism Choices. The Way to Communication.

Choices.

At the age of two, we had our first speech and language appointment. It was pretty noneventful, but the speech therapist did give us one piece of homework to take away and implement. It was something we would use for many years and still use today. It was to encourage engagement, the first step to communication.

At the time Rhys would take us by the hand to the item he wanted. It was his ultimate way of communicating his needs. This would be the fridge for an apple, the kitchen cupboard for a rice cake, or the telly for his show. Most things were within his reach, so he would often just help himself, gaining his independence just like others his age.

But he didn’t talk. Not a sound. Not a mama or dada, or grunt or squeak. His arm-guiding method met his needs, with no requirement in his world to do anything else. The choices were going to change that, and we set about implementing them straight away.

The instructions were to put everything Rhys asked for, or currently obtained himself, out of his reach. So we moved the crackers, rice cakes and breadsticks into a top cupboard. The apples and oranges were already in the fridge fruit drawer and safely out of his grasp. We became a house with everything in the wrong place. Like when you go to your granny’s and while making a cup of tea, you struggle to find the cake knife, and eventually find it in the top cupboard wedged between the tub of flour and a hairdryer. We were now an old lady’s house with rice cakes alongside the plates and bowls, and raisons amongst the teacups.

We always had this instinctive sense of what Rhys wanted. There was only a handful of food items he ate and other activities were limited. This change was to get interaction between us and Rhys, and encourage him to ask for what he wanted rather than taking us to it.

As soon as we had rearranged the kitchen, we put the strategy into action. After being dragged to the fridge, I bent down to his eye level, fully aware of his non-verbal request for an apple. “Rhys, apple or orange” I said, gesturing each choice with each empty hand. He stood staring passed me towards the wall, no engagement, just the view in his mind that we were at the fridge, the location of his request.

I crouched there for ages that day, down at Rhys’ eye level, my calves burning, my determination strong. I was not waiting for him to perform a miracle, a verbal request for an apple, I was just waiting for a flicker of engagement. There was no magic formula, just time and hard work. It was hard that day, and every day after that. But it happened and was the start of a journey we had embarked on. That day I got a split second of eye contact, and that was all I needed to reward him with his request, an apple.

Over the years, I persevered. The response to choices increased from split seconds of eye flickers to second long moments of engagement, and slowly over time a sound was emitted that slowly formed the letter ‘a’ and later ‘apple’.

As soon as we got that first word we added more words to his request, prompting Rhys each time, and flooding him with praise as we handed over his requested item. Four years later, Rhys will now request with the words “I want orange please Mummy”, although prompting is often still required.

But life has a way of noticing when you have succeeded at a challenge, found a method that works. I walked into the kitchen, today to find my little boy now able to reach those high out of reach places from years ago. He independently opened the fridge, took out an orange, and turned to me with a smile on his face. His non-verbal communication clearly stating “I got it myself – screw you and your choices” 🙂

But I know that cheeky gesture is a form of communication we never had before. He was proud to ‘help himself’, and we needed to reach this point sometime, the time where he is growing up and wanting to do things on his own.

Our little independant boy.

🍏🍎🍊🍎🍏🍊🍎🍏

You can learn all about how to use choices from our strategies.

Autism Calendar: The Key to Daily Communication

Rhys didn’t want to go to school today.

He wanted to go swimming!

“No School!” he shouted, his words clear and audible as he desperately wanted to get his point across, “Swimming”, he added.

As we reached the bottom of the stairs, Rhys’ chanting of “No School!” continuing with every step, he approached the wall.

“School” he said, placing his finger on the chart.

“Yes Rhys, school. Then judo. Then swimming” I confirmed, touching each picture in turn, “Two sleeps”

It didn’t make him happier, but it made it clearer.

The calendar is a new addition to our home. It is a communication tool to help my son understand what is happening that day, and what is planned for the rest of the week.

Because Rhys actually likes school. He jumps in the taxi every morning and runs into the class each day. It is the understanding of what is happening that day that creates the anxiety. The fixation of an idea in his mind is what is hard to change it is what creates the tension.

This calendar is the key.

Well I sure hope it is!


The calendar we have used is available to purchase here.

To read more about the use of schedules you can read a step by step guide or explore further strategies across other pages on our site.