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Autism Life

Spinning to Success!

At Rhys’ three year developmental check, the health visitor sat with an assortment of toys and papers in front of her.
“Rhys, can you stack the blocks?” she asked, placing three inch square blocks in front of him.

Rhys paid no attention to the lady and casually placed one block on top of the next with no effort. He managed eight blocks all sporadically aligned but perfectly balanced.

I didn’t gasp in amazement or shine with pride at his efforts. Rhys built block towers all day long. He hadn’t followed an instruction, he had just seen blocks in front of him, and done instinctively what he knew and loved.

He failed every other test that day. He failed because every test required Rhys to follow an instruction. A bundle of words that were just noise to Rhys from a strange object that sat in our living room.

From that day on, he failed every “test” because of the communication and engagement element that is vital to prove Rhys could do something. It was the foundation to everything in order to move forward.

I had a little boy who could not talk, but even more relevant was that he couldn’t understand or process language. A simple request to a three or even four year old of “pass me that toy” while gesturing to it with pointing, made no sense to Rhys. The physical action of identifying an object coupled with words, was foreign to him and just a jumble up of sounds and hand movements.

My strategy was to get him to understand a handful of words and associated actions. Things we could build on, and add to engagement opportunities.

I would place an object in his hand and say “Take to Daddy”, initially taking him by the hand and getting him to deliver the object. Through repetition, these physical prompts associated with words, started to form connections in his mind that made sense. He began to follow the commands without fail.

Things were slow, but we kept on powering through.

As I sat on the floor this evening reading to Rhys’ older brother, Rhys sat playing with a Lego helicopter. He spun the propellers around, enjoying the motion. However Lego is only a pile of blocks at the end of the day, and a vigorous spin will always end in a disastrous way.

“Mummy, help Rhys” he asked, holding the propeller out to me. The decapitated helicopter lay on its side about a meter away from me on the carpet.

“Rhys, get helicopter” I said, pointing to the red lego toy.
“Mummy help” responded Rhys, touching the propeller in my hand, reconfirming his request.
I tried again but with a different word. “Rhys, helicopter here” once again pointing to it.
“Mummy help, broken” Rhys replied, getting slightly frustrated.
I gave it one last try, ” Rhys, pass helicopter”

Something triggered in his mind and in the split second that he looked at me, I knew something was about to happen. To my amazement, he followed my finger and reached for the helicopter, bringing it to my open hand.

Something turned in my tummy in excitement. I placed the propeller on top of the red roof, gave it a test spin and held it out for Rhys. Of all the action words I used, none were part of Rhys’ mental dictionary, until I used the word “pass”. The word “pass” was what made a difference today. The word “pass” is going to open up so many more opportunities going forward.

I held out the helicopter to Rhys, but before I removed my grasp I asked, “What do you say?”
“Thank you” he replied.

I smiled and eased my hand from the toy.

Things will happen when you least expect them, and often it is just slight changes like a different word or action, that result in amazing things.

I was so proud of Rhys tonight, as I watched him return to spinning the toy. I was proud at how far he has come and the development barriers we both break down together.

🚁🚁🚁🚁🚁🚁🚁🚁🚁

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Autism Life

A Mucus Worth a Second Look!

“He’s been sick!” came a scream from the hallway, “OMG! Come help it is everywhere!”

I jump up and run out of the lounge where I am greeted with my husband and a headless Rhys.
“It’s all over his hoody, help me get it off!”

The top has got wedged on Rhys’ head, the hood part gathered up around his neck, closing any gap which will allow us to get it off!

Rhys stands waving his arms around in his temporary blinded state, “Stuck, stuck” he shouts in a voice which is slowly moving to a tone of fear and potentially will end in only one outcome – one of meltdown.

“Watch his ears!” I shout – unsure why shouting is necessary, but seems to feel apt in these sort of situations. I push my fingers between Rhys’ neck and the orange material of the top, easing it over the one side of his head, but it pulls the other side tighter where my husband is attempting to do the same thing.

“We need to communicate!” he shouts, agreeing that panic shouting is necessary. Rhys adds his continuous screams for freedom, claustrophobia setting in.

We look at each other, a plan formed without the need for words. After a bit of agreed coordinated communication and team work, we somehow contort Rhys into some sort of gymnastic position and relieve him from his temporary restraint.

Rhys stands in the hallway, his bare arms poking out of the t-shirt, his little face one of confusion after the ordeal he has just had to be part of.

“Where was he sick?” I ask, still in a volume a bit to high for the situation, but my heart rate is still slightly elevated from the rouge hoody incident.

“There” says my husband pointing to the kitchen floor, while gagging, his mouth open and a paleness overtaking his face. (And he calls himself a man!)

The floor has that mucus type sick which is normally produced when the stomach has nothing left to throw at you.

I take a deep breathe and grab some kitchen roll and spray while Rhys gets a wet wipe and check over by his father.

As our panicked voices subside and we get on with our assigned roles, a little voice, which has been quiet for the last ten minutes, breaks through the silence.
“Make cakes?” it says. Rhys’ face has a questioning look, and still in a slightly confused state.

I look up bewildered, and slightly thankful that my son is feeling ok enough to engage with us.

Then my husband laughs, a little to loudly, and stops consoling his recently vomiting son.

“What’s so funny?” I say, while on my knees, spray in hand trying to return the floor to its recently polished, clean state.

“He wanted to make cakes!” confirms my husband, and then shows me the frying pan from the morning’s breakfast, containing a broken egg amongst some egg shells.

I look at the manky, used kitchen towel in my hand, small pieces of egg shell are visible amongst the mucus.

“I guess we are making cakes!” I say.

“Chocolate cake!” says Rhys.

“OK, chocolate cake!”

🍰🥚🤢🍰🥚🤢🍰🥚🤢🍰🥚🤢

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Autism Life

Can We Let It Go?

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.

Music has always been part of his life.

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!

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Autism Life

Mum Is A Super Hero!

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?

Image: http://www.kindynews.com

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.

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Autism Strategy, Speech

The Communication Pyramid

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.

The Communication Pyramid

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.

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