Monthly Archives: April 2022

Autism Life

Autism: The Word No One Would Talk About!

The towers were huge. He would take a block, and without any effort, immediately know the position, the balance and the physics.

The towers grew to his height and beyond. I would watch him stretch his arms above his head, placing that final block way above his blonde curls.

He was only 18 months old!

When the health visitor arrived for his 18 month developmental check, she placed three blocks in front of my son. The milestone he was expected to reach at his age.

I remember the giggle inside me, as I watched Rhys stack each block on top of the other, then gather other different shaped blocks and create a sky scraper.

The health visitor’s mouth took a good thirty seconds to close. She had not seen a skill in a child of my son’s age.

But that’s when it stopped.

My son could stack blocks. His fine motor skills exemplary.

But he was silent.

He said no words. He didn’t respond to my requests. He couldn’t make a pretend cup of tea when asked. He did no imaginary play. He didn’t socialise with any other children. He was locked in his world.

I held onto his strengths. But struggled with where he wasn’t making the grade.

That was a time of uncertainty. A time where no one told me the reasons. A time when all I wanted was for someone to give me the answer. To give me the guide book on what I could do.

But no one did.

Not until a good two years later.

And that is tough. That is hard on a parent.

Two years it took. And then many more years of fighting for help and closure.

Because Rhys was not the one who needed to change. I needed to change and understand the mum he needed me to be.

I am not there yet. I will keep evolving. Things will keep adapting. I will keep learning.

I just wish autism wasn’t so taboo. I wish those in the profession could have told me what they were seeing. I wish the system didn’t mean they couldn’t, and it is only the role of the paediatrician that can.

Our children don’t need to change, this world is what needs to change!

Autism Strategy

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.

Day Out, Uncategorized

Autism Communication: When Physical Communication is All You Have

Rhys pushed a little girl today.

She was behind him on the slide, waiting her turn, but still slightly too close for my son’s liking.

She wanted her turn, but my blonde haired boy was taking his time, not considering the queue, but rather just doing his own thing.

She came into his space, and he non-verbally communicated with a little push. Nothing violent. Nothing harmful or malicious. Just a message of how he was feeling. A physical gesture for a boy who can’t communicate in words, like all the other children in the playground.

Once Rhys had descended the metal tunnel, he jumped up and run back for a second go. I watched the girl reach the bottom, she stood up and ran towards her mum, then pointed to the boy in the bright yellow jacket.

I felt a nervousness deep in my gut. Would this lead to a conversation or be brushed off as playground banter? It had happened before, and it was a lottery over what parent would be next in the line up of conversation.

But this time I didn’t wait to find out. Rhys was off to the swings, so I ran to help him out. A get-out-of-jail-free-card that I gladly accepted on this occasion.

I don’t agree in playground violence. If the push had been harmful, I would have been the first one up there to demand my son to say sorry – in his own creative way. But it wasn’t. It was a little nudge, a hint at his uncomfortable feelings of her presence in his space.

This is what I deal with. I don’t sit on the side at playgrounds or play centres. I lurk around the edges watching. I follow my son with my eyes to make sure he is safe. Little kids are safe, and that he is supported where he needs to be.

Maybe one day I can take my eyes off him for a second. Maybe one day I can sit on the side and have a coffee or a catch-up or a chill.

Maybe one day.

But not today.

Autism Life, Day Out

Autism: A Word to be Feared or a Fear to Not be Mentioned?

The lady said ” Would you mind me asking?”

Which was a strange question, when you don’t know what was about to be asked.

But I knew, so I nodded and said, “Of course”

I knew because my son was struggling. He was scared and anxious of the walk ahead, a place we hadn’t been in a while. A place where he didn’t have his marble run or favourite shows for comfort, just the trees and the dusty path.

He was crying, so we cuddled him to reduce his anxiety. Taking only a couple of steps and then giving a cuddle top-up, a burst of natural endorphins to keep him on the right side of the boundary of meltdown.

The lady looked at us and smiled as she warmly asked, “Is he autistic?”

“Yes he is” I answered calmly, cuddling Rhys one more time.

“You are doing an amazing job” she added.

As we walked on a few more steps and the cuddles became less and the gaps between them became further and further apart, I knew we were OK. I knew where my son’s line between anxiety and way-too-much began and ended. It had taken years of trial and error and getting to know the signs.

Rhys had just needed the cuddle-support method to get past his first hurdle.

As we walked hand in hand I thought about the lady’s question. I want more people to ask about Autism. I want it to become acceptable to ask a question if someone is thinking it and give acknowledgement of the hard. It helps sharing knowledge. It reduces the fear of the word.

I knew nothing about autism five years ago. I had heard the word but never been given any context. If the word had not been so secretive and unspoken maybe I would have gained acceptance quicker? Maybe I would have been able to understand my son’s world sooner?

Once we got past our the initial tense part of our walk, the stroll through the trees was calm and engaging. We took our time and enjoyed the outdoors. A successful trip that had unfolded as a result of a cleverly thought out plan and strategies we had learnt and others we had created ourselves.

Well until I said “Rhys, I see horses”, and then he told me to bugger off in his own special way!

I guess we are still have a bit of work on the “I see” activity goal. 😄

Autism Strategy

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