Category Archives: Autism Life

Can We Let It Go?

January 10, 2021 AMe

In 2013, the epic film telling us all to just ‘Let It Go’ hit our screens, with crazy round bellied snow men and reindeer with strange impressions crunching carrots. Little girls ran down hallways in snowflake encrusted gowns, trains of material temping the naughty foot to entice an unfortunate trip up.

For those without kids, you may think the magic of Elsa faded as those young children grew up. But I can reassure you that the magic still goes on and she has still not let it go!

My youngest (now three) is the next generation of frozen enthusiasts, even getting hooked on the sequel (dvd release), and my eldest from the first generation of frozen excitement, still has the magic in his bones.

Santa was thoughtful this year and sent an amazing Easy Keyboard Tunes book of Disney songs, including all the classics, from bouncing Tiggers to the tune of the monkey wanting the secret of man’s red flower. But it would not have been five star Amazon rated without the Frozen classic, and thankfully it did not disappoint.

The book’s crisp pages were turned with each song receiving a gasp of excitement, by my eldest, as he marvelled at the selection of choice.

“This one he shouted” and placing the book on its holder, he lined up his fingers on the keys.

Now my middle son, Rhys, loves music, but has become quite particular about the songs which can be sung and anyone in the house striking up a tune. Many reasons spin through my mind, from the lack of perfect pitch his audience emanates, to the song versions not correlating to what he has playing in his head. His autism means he likes things in a certain way, and lack of tune does not rank highly in his book.

But we carry on, and find new songs which he doesn’t know, therefore ensuring the tune can form a new connection and experience for him. We have got very creative over the years.

So when my eldest decided to strike a note it was going to be interesting to see Rhys’ reaction.

The first few notes started to be played representing the first words of the classic tune we had all grown to love (or is it hate?) As the notes moved through the song, in a clunky, unusual flow, I could hear the familiarity in it.

My eldest didn’t sing the words, the concentration of the first run through of the notes was enough at this moment. But as we listened, a tiny voice who had never sung the song in his life suddenly came to life in the next room.

🎵 Let it go, let it go … 🎵

“Did you hear that?” I shouted to my eldest.
“Rhys is singing the song” he responded.

We both beamed with pride at what we had heard, these moments are magical in our house, the sudden demonstration of development or proof that we are moving forward with engagement, speech and interaction. The sign that we are doing things right!

We immediately both broke into tune, ecstatic that Rhys had picked up on all the years of frozen excitement and was ready to experience in a joint love.

🎵Can’t hold it back anymore
Let it go, let it go
Turn away and slam the door
I don’t care what they’re going to say …🎵

We were both belting it out, the keyboard notes all over the place, our inability to multi task so early on in our musical immaturity. We were bopping around thinking we were West end stars, both understanding the leap forward Rhys had made in recognising a piece of music and then assigning the words.

But our impromptu party was abruptly halted, as Rhys entered the room and screamed full pelt at us. We felt like misbehaved school kids who had taken a bit of classroom jubilee a step too far, the noise trailing down the corridors to the heads office.

The singing stopped, the dancing halted, and my eldest clawed back the excitement placing his fingers calmly back on the black and ivory to play the notes properly.

But the words didn’t stop,

🎵 Let it go, let it go 🎵

Sang Rhys, all on his own without the fuss of us crazy nut cases!

Autism Life

Mum Is A Super Hero!

January 9, 2021 AMe

A mum casually gets out of the car at the supermarket and lifts her two year old son into the trolley. The little baby is fast asleep as he is lowered into the trolley still in his car seat. They enter the supermarket casually, the two year old clutching his soft toy cat and pointing at the seagull perched on the car roof.

On entering the supermarket, they walk up and down each isle gathering each item on the list. The two year old speaks in full sentences, his communication way beyond what is expected at his age, telling his mum about the Okapi, which has a stripy bottom like a zebra and the top half of a horse. He is concerned that they are now endangered, and how he can help them to survive. The mum admits to herself that she has never heard of such a creature, and can’t work out where her son has come across such detail on the animal.

As they approach the bakery section, to tick bagels off their list, a frustrated father stands watching as his little girl lies kicking and screaming on the floor. He doesn’t seem to be doing anything As the girl screams and kicks out, he grabs a bag of chocolate donuts, and hands one to the girl, who takes it and calms down.

“My children will never act like that”

The mother takes some bagels off the shelf and stares at the scene in front of her. Appalled at how the child has “won”. There has been no lesson learnt here, the child will continue to throw a tantrum the next time she wants something. “My children will never act like that”, she silently thinks.

This woman in the supermarket, was me 5 years ago. I had it all together. I had never been closely subjected to disabilities or hardships that many parents face on a day to day basis. When I saw kids misbehaving, I assumed bad parenting. If I could have control over my children in public places, why couldn’t everyone else?

When the word autism started to be mentioned in regards to my youngest son, Rhys, I had no clue what it meant. I had no experience or knowledge of autism, all I had was the image of a kid rocking back and forth in the corner. People often mention the film Rainman, but I hadn’t even watched that!

When he got his referral for speech therapy, I was excited and truly believed that he would walk into a session, and the expert would look at him, wave her magic wand and tell him to talk…and he would. I wish someone had told me how it actually worked and the process he would have to go through before he would even say his first word.

The reality was that I didn’t even get him into the room for the first speech session. This was the baseline I had to start working from before I could even consider trying to get him to communicate.

As Rhys grew older, I became the parent in the supermarket with the child in meltdown. I had transitioned from this totally in control super-mum to a parent in the school playground, trying desperately to get my eldest into school, while Rhys was in full on meltdown on the playground floor.

Parents would be staring at me, and the ones who had enough courage, would come up to me and ask, “Are you alright, anything I can do to help?” I would sometimes hold back the anger, but mostly the tears, and pray that the ground would open up and swallow me.

Every morning I would wake up and think “Today is going to be a better day”. My positive hat was on and I was ready to take on any challenge. But each day was no better than the one before, and sometimes worse. I would try to do normal every day chores, but was met with meltdowns. I started to lose confidence in my abilities, and as each day became more challenging, the energy and drive I had before, started to fade.

As time moved on, the school run became unbearable. I would manage to get the kids out of the house, only to be met with Rhys distraught as he had thought we were going in the car, only to now be dragged across the road to the school. A task that was so simple to every other family, the need to walk a few meters across the road, became too much for me.

“They told me that I would develop a thick skin!”

I didn’t know how to move forward. I felt sorry for my eldest son, who had to endure a screaming brother alongside him and a mum who was still in her joggers and bed-hair, trying to get across a road. Life had taken a 180 degree turn and I couldn’t do it. When I started to meet other mums whose children had autism, they told me that I would develop a thick skin and that my focus must be on my child and I need to look at ways to decrease any anxiety or triggers that would cause meltdowns.

I had to take a step back and work out how I could cope with this change to my life – as I had previously known it.

I was not the super-mum I use to be. I was a mum who had to work out how to cope. I gathered friends, family and professionals to help me get back into a place where I could start to move forward. I stopped doing the school run and my husband shifted his hours at work to be there to pick up our eldest. It was alarming to think that it was impossible for me to walk across the road to collect my kid. But it was.

“I AM GETTING MY Supermum status back – just in a slightly different way!”

I had been broken down and lost all confidence in myself and the ability to find strength to do the simplest of tasks. It took 2 years to get to where I am now. I can now pause and think “I am doing it, I am in control”. I am now a mum with 3 kids, one who is autistic, but I feel I am getting my super-mum status back – just in a slightly different way.

There have been many strategies learnt, some advantageous and others just not practical. But we are getting there. Most days are now “good days”, and challenges come and are conquered. They have made me stronger and able to take on more than I ever expected I could.

When I see parents in public places, with their children kicking off, or having a full on meltdown, I now look at it in a different light. That child may be overwhelmed and have challenges they are trying to overcome. The parent may not have a clue what to do, or they may know that that a chocolate donut will distract their child enough to allow them to calm down and deal with the situation at hand.

We cannot look at a situation in isolation and think we know better, or assume we know what is going on in that family’s lives. We don’t have the back story or the full picture of what challenges all parties are facing.

We all need support and need to accept each other for who we are. We are all trying our best at this monstrosity called life. So don’t stare and mutter under your breath a comment that will be of no assistance to anyone. Look to see how you can help, or if you don’t know how to help, a comment such as “We have all been there, you are doing ok!”, will work a treat and help that person take a breath and grab that magic donut.

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?

A&Me