All posts by AMe

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Striking a Chord!

We have a little toy keyboard, which we got as one of the very first presents when children filled our house. It has sat in the music box and still gets pulled out from time to time for a bit of a living room jam. From before Rhys could walk, he has been attracted to music, he played the keyboard key by key with meticulous precision, in comparison to his siblings who did the standard toddler multiple key smash!

Times have moved on, and although the small toy keyboard still remains with the other instruments, we have upgraded to a full size unit, with full size piano keys, beats and lights.

“Ready?”

“Ready” shouts Rhys.
I position my hand on the keyboard and press the G key, initiating the tune. Two little hands are placed on his head, as Rhys enacts the song, now for the fifteenth time!

“Heads, shoulders, knees and toes, knees and toes” he sings. Each word linked into the correct key as I move up and down the keyboard. As I come to the end of the tune, I pause once again and a little voice announces, “Ready” his hands on his head ready for another round.

I have not yet got him to play any notes, but this is a new development. A task of engagement where Rhys is asking me to play the song, and as I play he joins in with the words and actions. Bit like a duo 🙂

My plan is to use Rhys’ love for music, and through my playing introduce him to the love of pressing the keys in sequence himself. I am no Mozart or Chopin but I am proud of my lockdown goal of playing the keyboard. So far I have three songs in my musical cv – Heads/Shoulders, Wheels on the Bus and Twinkle Twinkle! So not quite at the level to knock out a Sunday Service, but I am confident that I can play one of those songs by ear the next time a piano presents itself!

There is a lot of research around the strong link between autism and musical ability. It will be lovely to see Rhys play one day, but for now the engagement and fun we are having is enough.

It is like an old movie or Christmas card as I sit at the modern piano playing while everyone gathers around and sings – well that is the image I am going to portray to everyone! It is actually a bit more chaotic and repetitive. But we are both having fun.

Watch out Von Trapps, we got this!

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Age Has No Limit!

To my eldest son,

On Monday you asked, “Mummy what is autism like?” I told you my answer, and we sat and watched an animated explanation, showing how your brother sees the world differently to you.

As I waited outside the school gates for you yesterday, you saw us and came running up with your arms held wide. “Hello, Rhys” you said, taking your brother’s hand in yours.

The cars flew by us on the busy road, and you mentioned the noise and how scary it must be for Rhys, remembering the video we watched and the enhanced sensory overload that would have met his ears. You turned to him and said, “It’s ok Rhys, I’m here” as you held his hand all the way to the park gate and away from the noise.

A few hours later while we sat in the car, you asked “Will Rhys always be autistic?” I responded “Yes, but with our support he will be able to do everything you can do”.
“Except for maths” you immediately corrected “Rhys is good with numbers, he will need to help me!”

We continued to speak about our own challenges and what we found hard. About how practicing the tough stuff makes it easier, and where it is too hard to overcome, tricks, strategies and even technology can be used to make things possible.

As you sat in the back of the car with your brother, you said “Rhys help?” as you took his kinder egg treat from his hands and helped him with the wrapper, his little fingers struggled to open. You used simple words when you engaged, in the way you have seen myself talk to Rhys. You know how to communicate with him and instinctively know when he wants help. His trust in your actions is evident, in his willingness to let you help him.

I don’t think I ever had the maturity you have when I was your age, or even twice your age. The view you have of autism out performs the attitude many adults I have ever come across. Your ability to see the best in everyone and not being afraid to ask questions and help others who don’t find things as easy as you. That is the mark of an amazing character.

My worries for Rhys’ future decrease every time I see you next to him. Your keenness to learn, to understand, to support are beyond the abilities found in many fully grown adults. Don’t ever be afraid to stand up for your brother, no matter who questions you. You don’t support him because of his challenges or his autism, you support him because he is your brother, and that’s what brothers do.

I am so proud of you every day. With you at Rhys’ side, I know you have his back. But you don’t only have his back, you back up every person who has challenges through autism. You raise awareness through your need to gain knowledge and the help you give your brother.

And you are only eight years old!

Love you always
Your Mum
Xxx

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Red Card Day

Today we show racism the red card!

There is no reason to mis-treat or discriminate anyone due to their race or colour of their skin. We are all humans, share the same planet and breathe the same air.

You may wonder why this photo shows my three kids in red but Rhys with a green shirt? There is a reason.

Autism means any change in routine can result in confusion and a melt down. On days like today, where the school uniform is ditched for a good cause, it plays havoc with our standard routine. Without his uniform, Rhys thinks it is the weekend. This leads to confusion and major upset when he is taken out the door to school.

It was so difficult and upsetting, for such a minor change in a day to result in trauma and anxiety. In the past, I would just send him into school in his uniform. He didnt care. But I felt like the mum who had forgotten about dress down, even though what I had done was a lot more than “forget”.

I then had an idea🤔. The next dressdown day I laid out Rhys’ dressdown clothes with his school tshirt at the end. I helped him put his school tshirt over the top of his clothes. He saw the what he was wearing and immediately knew it was a school day!

At the last moment, I pulled off the school tshirt, put on his coat and send him out the door.

I have done this every school dress down day since…..and it has worked. Rhys can now support every worthy cause by handing in his coin and being dressed down like, everyone else. It is one less difference for Rhys to deal with due to his Autism!
Everyone’s a winner 😁

#showracisimtheredcard #autism #thinkingoutsidethebox #strategies #youcandoit

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🛒Booster Seat🚗

“Rhys, shoes then shopping”
I use his name first to trigger his attention and then purposely provide the sequence of events in the order they will occur.
Rhys comes towards me, “Shoes” he repeats, showing understanding of the request. He sits on the bottom step of the stairs as I place each shoe on his foot and secure it with the velcro strap.It is something we do everyday. The simple language helps him understand. Minimal words mean no confusion.

Six months ago I would have supplemented these words with a picture of his shoes followed by a picture of a car and then the shops. We have come so far since then, with his understanding of language and following instructions improving all the time.

Off we go. Rhys climbs into the car, “Shopping” he says with excitement. Glad to get out the house and see the sights.

We have always been lucky with shopping. I have taken Rhys since birth. The tanoy system, mixture of different colours and sounds have never resulted more than a seldom cupping of his ears.

We arrive at the supermarket.

“Rhys, Mummy get trolley” I say. Once again using the minimum number of words possible. After getting a trolley I return to the car to get Rhys. He climbs out the car and I hold his hand to ensure his safety. I grab his booster seat and place it in the trolley.

Booster seat? You may ask! Let me explain…

I have always put Rhys in the trolley for shopping, but as soon as he was too big for the “baby seat” I had to put him in the main trolley part, but this caused upset. Rhys would stand up in the trolley demanding to be let out. I would try do the shopping but he would be running around the shop or lying horizontal across an aisle, stopping shoppers from getting past. It was a disaster.

I knew I couldn’t go on like this, so I did what I always do, I analysed the situation. Naturally, I assumed he did not want to be in the trolley. It was a change to routine moving from the baby seat to the big part.
The next time we went shopping, I watched his actions as I placed him in the trolley. He happily got lifted up and attempted to sit down, the second his bum touched the trolley he stood up and protested. I then realised that it was not what I had expected at all. It was uncomfortable for him to sit on the metal mesh of the trolley. I grabbed his booster seat from the car – a potential solution to our problem. I placed it in the trolley and lifted Rhys back in. He sat down with no protest. A comfortable ride for him and successful shopping trip for me.

So here we were ready for today’s shopping trip. Rhys in the trolley on his comfortable booster seat.

Off we went into the shop.

Right on cue Rhys announces, “Apple!”. I find a bag, open it and hand him a red one. He is content with his comfortable seat and snacks to enjoy while he is wheeled around the aisles.
This is the standard routine for shopping. Being pushed around with an apple as distraction.

As we move around the shop, the different items being strategically place around Rhys, he shouts, “Up”. I panic slightly, wondering how this is going to turn out. I lift him out the trolley and place him on the ground next to me.
“Rhys, hold the trolley” I request. His little hand grasps the handle and he pushes forward with all his force. I continue to gather the last items on the list, keeping one eye on Rhys the whole time. He lets go of the trolley but happily runs back and forth next to it. Suddenly he goes a bit too far for my liking, I shout “Rhys, Stop! Rhys, this way”, he stops, turns around, a smile across his face and runs back towards me. I feel a warm sense of pride. Out in the wild world of the supermarket and I finally have control 🙂

I was so proud of being in a supermarket with Rhys out of the trolley, enjoying an experience that was not stressful but actually a really nice bonding experience.

We finished our shopping and headed back out to the car. Rhys’ hand on the trolley, content with his new accomplishment. Going forward, I think weekend shopping is going to be our thing 🛒🛍🚗