Tag Archives: success

Throw Back

Milestones Worth Celebrating!

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I remember standing in a gymnastic hall. All the equipment surrounded me, the parallel bars, beam, trampolines and other strange equipment that I don’t know the name of.

Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

Kids ran around us joining in with the toddlers open floor session. Some joined in with the songs and their corresponding actions that were being enacted on the open floor. Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

As parents followed their children around the different pieces of apparatus, I could overhear a parent next to me. Her little girl was about two, and carefully tackling the well thought out obstacle course that had been setup by one of the instructors. Her mother held her hand as she walked over the soft mat up to the low ground-level beam. “Come on darling” she said “you can do it”.

The little girl was nervous but reluctantly put her first foot forward, the only stability she had was from her arms which she spanned out on either side of herself to distribute her weight. As she took each step, she came closer and closer to the other end of the beam. Her mother slowly walked next to her, judging if she was going to make it, ready to grab her hand if the wobble became a potential slip or fall.

The mother watched her daughter’s every step, but she only watched with one eye, because her other eye was on the rest of the room. She checked to see if anyone else was witnessing this achievement in the making. Her daughter was in her element, she was reaching a milestone worthy of an applause.

As the little girl took her last step and accomplished the great feat, her mother lifted her in the air, and slightly louder than required said “Well done, you are amazing” then swung her around and looked for the next opportunity for success.

I turned away from this celebratory event and stared down at Rhys. He sat on the floor oblivious to all the people, children and noise around him. I followed his line of slight across the wide open space and up the wall about ten meters away from him. Half way up was a white clock, the numbers one to twelve around the edge.

Out of all the activities, entertainment, and gymnastic equipment, he had chosen the item that had the least relevance to the situation, but an item that meant more to him than any of the things that surrounded him.

I had no hope of getting Rhys to walk a beam like that little girl. I had no ability to even get him to engage with the room. The clock on the wall was his only interest, not the ability to display his achievements of somersaults or dismounts off a low beam.

Since this situation about five years ago, I have overheard many milestones being celebrated by parents. They are being celebrated in parks, play centres and all across social media. A video of a child’s first words, or a little boy initiating a pee all by himself behind a tree because he knew he needed to go!

Rhys is accomplishing so many things, but often I feel that I don’t have enough words to describe the mountain we have climbed to achieve them. It is so hard to explain the feeling when Rhys runs down an unknown path for the first time, or he says “drawing”, taking a pen in his hand with no reluctance, or he understands a simple command like “pass me that book!”

… to others it just doesn’t seem to be as bigger deal to them as it is to you.

It is a feeling of wanting to shout it from the roof tops. It is not like the mother in gymnastics who secretly invites you to share in the accomplishment. In contrast, you want to fly a banner through the sky and publish it in a newspaper. But to others it just doesn’t seem to be as bigger deal to them as it is to you. Their children did all these things as part of their ongoing development. They are not milestones they recorded or celebrated. They just happened!

But that doesn’t matter because they are not their child’s achievements. They are Rhys’ achievements. They are the result of hard work, and I have realised that I don’t need the acceptance from others to confirm that they are worthy of a bottle of champagne, because I know what we have gone through to achieve them. He may have taken a bit longer or a lot longer to get there. But it is not a race, we all do it in our own time.

There is no need to look to others for acceptance that something is worthy of celebrating. We all know that feeling inside when something remarkable happens, and when I look at Rhys, I know deep down he is celebrating with me too.

🕝🕑🕧🕣🕞🕜🕟🕢🕥🕙🕦🕚🕠

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Autism Life

Erase the Word!

I remember sitting on a hard chair, going through the motions, listening to the analysis of my son – the reports and information which had been collated on him.

We spoke about his delayed speech, his lack of interaction and his low levels of engagement. It was hard dissecting every level of my child. Documenting where he was behind. Discussing where he was not meeting the grade defined by the milestones of the standard parenting guidance.

Then the diagnosis came.

Autism Spectrum Disorder!

“So is he high or low functioning?” I asked. Wanting to know where he fell on this so called “spectrum” I had heard so often mentioned.

I wanted the paediatrician to stand up and draw a line on the whiteboard behind her and show me where my son fitted on this high-low continuum that everyone talked about. I then wanted her to point me to the books and guidance of how to approach it. I wanted the toolkit.

The toolkit however never came, and over months and years I had to gather it together myself. This was psychology, it was not math. It was not black and white. It was not a clear definition, just a recognition that my son had social and communication challenges. I had to work it out myself and through trial and error, find what worked in our situation.

I had to work it out because people are unique!

Every one of us is different. There is not one solution or magic handout that meets every set of circumstances.

To every person I met after that, I found myself saying “Rhys has been diagnosed with autism” but then I would promptly add “but he is high functioning!”

It was a statement (although not realising it at the time ) I was saying to make myself feel better. But it was also a sense of denial, where I was trying to ignore my son’s unique characteristics and didn’t want to accept the full membership into “Club Autism”

But in that one statement, I was separating autism from society and confirming that it was something that we had just scratched the surface of and didn’t want the membership into!

But even worse, it was a slap in the face for those who had greater challenges than us – or did they? I hadn’t paused to consider others and the extreme variances across the spectrum, or that some of my own son’s characteristics would be far more challenging than others.

So I stopped.

I started to learn more about autism, and that it was OK. It was new and I had a lot to understand, a lot to digest. But more importantly, I removed the words ‘High Functioning’ from my vocabulary.

My son is autistic. He has challenges in areas of speech, communication and perceptive language, but he has strengths in maths, a photographic memory, cuteness and laughter.

So from that point forward whenever someone asked me where my son was on the scale of autism, my response was that he was autistic. Nothing else. No high. No low.

It sounded strange, I was suddenly not justifying where he sat amongst the other autistics. But when I paused to think about it, I asked myself, “When was the last time I was asked where I fitted on the Neurotypical scale?” When in general conversation had I been asked how good or challenged I was against my peers?

If I had to answer and say “I struggle with faces and names” people don’t nod and tilt their head to the side, and give me a sad caring face with a reply of “Oh I am so sorry!”

Of course they don’t! So why should we treat our children that way?

We are all unique with our own strengths and challenges. So let’s remove “High Functioning” from our vocabulary and just see each other for who we are.

My son is autistic, and we are learning what works as we get through each day. Just like every other parent. Just like every other child.

Let’s stop pigeon holing each other.

Let’s remove High Functioning from our vocabulary and just be unique.

Let’s just be ourselves.

#erasetheword

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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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