Tag Archives: goals

Milestones Worth Celebrating!

March 7, 2021 AMe 1 Comment

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.

🕝🕑🕧🕣🕞🕜🕟🕢🕥🕙🕦🕚🕠

Autism Shopping

Bail Me Out!

January 23, 2021 AMe

I was put in jail today.

Let me start at the beginning…

It didn’t go well from the very beginning, as I helped Rhys into the car for our weekly shopping trip. “Here’s the shopping list” I said, handing him his list of pictures in the same way I do every week. But he had other ideas and with a returned response of “No!” he threw the list on the car floor, followed by, “It fall down, it fall down!”

I had already started to accelerate the car forward, so I pulled to the side of the road, stretched over and picked up the list, handing it to him once again. He took it from my hold, but immediately discarded it back to the floor. It was a game I wasn’t going to play, so I continued forward along the road, coming to the supermarket with a child slightly less happy than when we left.

“Rhys shopping” I said opening the door and taking his hand. He walked, although reluctantly, towards the trolleys, and climbed up onto the heavy goods shelf which we use as a trolley buggy-board.

All seemed to be going to the standard plan, as I pushed the trolley and my son forwards into the shop. It was semi-busy (medium if you want a good gauge of crowd limits) as I pushed up the first isle of fruit and vegetables.

“Rhys, apples?” I said, holding out the apples and then pointing to the little apple picture on his list.

I gestured him to move it across to the red ‘done’ section in the way he does every week, but Rhys turned his back on me, and collapsed to the shop floor, a full on protest against the shopping trip.

Even ignoring social distancing, the space for my fellow shoppers to meander around him was non-existent, so I bent down and lifted him up, but only after he let his tongue make contact with the floor for a good corona tasting session!

As we moved down each isle, I turned the trip into an episode of Supermarket Sweep. The bread got a battering at the bottom of the trolley, with the eggs somehow staying intact throughout the experience. The new game show experience was made more complex with constant lifting of Rhys from the floor, or immediate trolley abandonment, as he ran down isles and through gaps in the supermarket shelving.

I soon agreed with myself that I had enough items to consolidate into some sort of eating experience, and headed to the tills, with Rhys in a fireman lift over my right shoulder, and my left arm manoeuvring a semi-full trolley down the final isle.

People stared, but I was beyond caring. This was an experience I was about to just write off, and all I had to do was get past those tills in front of me and into my car towards home.

The end of the experience was so close, but Mrs Old Lady in front of me, was taking her time trying to work out the complexity of contactless payments, only adding to Rhys’ urgency to get out-of-the-shop!

Rhys ran through the tills and lay horizontal across the floor, blocking the exit to anyone keen to leave. He kicked off his shoes, each one flinging across the space, leaving a middle aged man, unsure how to proceed past the situation.

“Just go round him!” I shouted, having totally given up on any shred of dignity I had left. The man pushed his trolley, making sure not to roll over a foot or stray leg, and I just continued to place my groceries on the belt, knowing the quicker I did it, the quicker this nightmare would be over.

“One, two, three” suddenly came through the tannoy system. A voice I vaguely recognised, but out of context I just couldn’t place. Then I turned my head and saw the origin of the sound. Rhys stood on a chair at the end of the tills, the announcement phone in his hand, and his mouth moving in speech.

I let my shopping and ran towards him, hoisting him into my arms, returning the handset and taking one big breath. All this had to be over soon!

I started to place the last few items into the trolley, with Rhys secured safely on my hip.

“One hundred and sixteen pounds, please?” asked the kind cashier, “would that be cash or card?”
I pulled out my card, and putting it into the slot, entered the code. The screen immediately beeped and a message appeared saying “Card declined”.

I stared at the screen. There was money in my account, what was happening. I tried a few more times, and each time I was rejected.

“Do you have another card Ms?”
“Yes, but I don’t know the pin” I replied, starting to panic not knowing the options to get out of the situation!

I was ushered to the side, Rhys still on my hip and my trolley of unpaid shopping beside me. “I’ll contact the bank” I said, and through the banking app got hold of a lovely lady called Lidy via the chat.

‘To ensure this is not a fraudulent claim, please send us a selfie of you holding a form of ID’ she said via the letters entered across my screen.

Then my phone screen dimmed, and a low battery message flashed before me.

“Crap!”

I cut-off Lidy (she probably wasn’t human anyway) and punched the only number I knew into my phone, hoping I had enough juice to allow me my one phone call.

“I need your card” I blurted out. Then the screen went blank.

I could feel the sweat accumulating on my skin as my nerves took hold. I thought about removing my coat to cool down, but then remembered that I was braless, and it was not a sight I could present to the world, even though I had taken them through enough already.

As I suddenly looked to where Rhys was, I was once again taken aback to see him seated at an empty till pushing on some buttons which must have done something, but I had no clue what! So I once again hoisted him onto my hip, and stood waiting in hope that my saviour would arrive.

It took ten minutes. A long ten minutes, but my husband walked in with a card in his hand. He looked at me and smiled.
“You ok?”
“Yes, I’m fine” I blurted.
He then looked at Rhys, and then back at me. “Well done. I dont think I would have had the strength to hold it all together as well as you do. Let’s go home”

Handing over his card to the shop manager, he paid my bail, and we left with just a smidgeon of my dignity still in tact.

I might try a different supermarket next week!

🛒🛒🛒🛒🛒🛒🛒🛒🛒🛒🛒

Autism Strategy, Speech

The Communication Pyramid

January 8, 2021 AMe

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.

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.

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