Tag Archives: Autism techniques

A New Place To Sleep

I hear a sound through the darkness. It is quiet at first, then the noise gets a bit louder. I lie still as a rock, not wanting to give away my awake status to the occupant sharing my slumber zone.
If I just stay still and pretend I am in some sort of deep sleep – the game of patience, the game of who breaks first.

I am strong, I will not break.

The murmurs continue, and get loader, turning into a situation which confirms a wide awake occupant next door.
“Where’s Mummy gone?” come the shouts. A learnt phrase that is muttered in any event of stress.

I am beaten.

The request has come for me, and no matter what I say, my husband will use this request to his advantage. “He called for you” he would say, and when you have prayed for years for any ounce of communication, things like a shout for his mum cannot be ignored,

I literally roll out of bed, my pyjama bottoms having crept up to my knees during my previous hours of sleep, and my vest top is in some sort of disarray.

I ignore my appearance. It is 3am, so my fashion sense has no entry into review, as I walk sleep drunk into the room next door.

I look down at my little blonde boy in his bed. He looks up at me, love in his eyes for the person he has wanted.

I look back at him.

I have two choices, firstly to crawl in beside him, in the lower bunk and take my role in the mutual war to claim some bed space. I might get a few hours of sleep, and I am assured that Rhys will get some too. But the bunk is low, and I have been the co-sleeper in this bed for too many nights, I want to try something new. A deviation from the norm!

I want to try a suggestion that my other two kids request on a nightly basis, to which I give into every now and again. It is something that Rhys has done about twice in his life. Something bizarre to him, because bedtime and sleep is done in his bed. Because that is how it is done.

But I am tired. My bed is big and warm. An investment in a super king which was done for these reasons.

So I test the water. I make the suggestion. I hope for a change to the norm.

“Rhys, come sleep in Mummy and Daddy’s bed?” I ask reluctantly.

I suddenly stand in shock and take a breath. Rhys crawls from his bed, and takes my hand. Teddy’s arm held tightly, determined to join Rhys in his new bedtime adventure.

We walk the long ten steps to my bed, each step I hope that this is going to be the solution, but knowing changes to routine can be catastrophic. We walk onward in the dark, my hope to keep the sleepiness at bay.

As we reach my side of the bed, I lift Rhys into his newly found bedtime space for the night. I then climb beside him, and crawl under the covers, Closing my eyes, I hold my breath in the hope Rhys will settle and sleep.

As I lie in silence, a small arm suddenly wraps itself around my body, and all is calm.

A moment so small, but so big for us. My little boy wanting to climb into our bed, and being able to find it so comforting that he goes back to sleep straight away. Not movement or squabble.

It’s the little things that keep us going. The little middle-of-the-night cuddles. The little changes in routine which happen without planning or even knowing.

This kid is doing things his way, even at 3am in the morning!


Change Your Question!

Three years ago there was one question I asked every person I met, every professional and every support group. It is a question I now get asked all the time, and a question which I see asked on support groups every week.

That question is “When did your child start to talk?”

The answers are always varied. You get the one word responses detailing the age of people’s children, and then you get more specifics, like “My son could only say one word a year ago, and now he doesn’t stop” or “My daughter just started talking in sentences” or “I’m still waiting, my son is nine next week”.

Human nature means we look for the answer we want to hear. If your child is four, you will be drawn to the response from the kind lady with blonde hair who has written “My son said his first word at four and a half”

You will breathe a sigh of relief and believe that your child will be the same, and in six months time your child will say their first word too. I mean why wouldn’t they, the kind lady on Facebook wrote that her child did? Why would yours be any different?

But your child is different. They move at their own pace and have their own strengths and challenges.

So after waiting six months, and your child has still not said their first word, you will find yourself back on that support group or Google, looking for the next response, possibly coming across a response from dark haired Dan whose son went from non-verbal to talking in sentences at five years old. You relax once again and assume your child will be the same.

You need to stop asking the question “When did your child start talking?” because you are asking a question which has no relevance to your child. You are comparing your child’s circumstances to someone else’s child, one you have never met and know nothing about.

I know what it is like. I have been there. I asked the same question. I wanted my son to start talking, because in my head, that would make everything OK. If he talked, everything would be solved!

It’s not that easy. But there are ways to make it manageable. And that starts by asking the right questions!

Change your perspective and change the question.

Ask, “How did you get your child to communicate?”

Communication is so much wider than verbal speech. A child may be able to talk, but has not yet developed the perceptive language to associate words with real word objects. Similarly a child may not be able to speak verbally, but they are able to understand language and communicate with a device, pictures or sign language.

If your child drags you by the hand to the fridge and points to an apple, they are telling you they are hungry and want a snack. They can do that without saying a word.

The moment my son signed the word “more” to me with Makaton while blowing bubbles, we were communicating even before verbal language was possible.

I cried buckets over the worry about my son’s speech. I asked everyone the question “When did your child start to talk?” But trust me on this, none of the answers to that question were any help to us, they just upset me more. They set up expectations that were never met.

Forget about getting your child to talk, and focus on getting them to communicate. Ask the question “How did you get your child to communicate?” The answers you get to that question will allow you to implement changes, improve engagement, and move towards having a conversation with your child.

The answers to that question will give you strategies and tools to help you increase engagement with your child, help you ask what your child what they want and need, and also let them tell you how they are feeling or what they are thinking.

All before they even say a word.

Speech is the last bit of communication in the process. Forget about getting your child to talk, and focus on communication. This switch in mindset will move your child through the steps to communication and finally speech. And if they don’t reach speech, you will have a selection of different ways to communicate.

Because at the end of the day, we all want to just have a conversation with our child. But that communication is not always verbal.

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Click here to read how I got my son to communicate.

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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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Bail Me Out!

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 hipΒ  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’Β  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 screenΒ  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!

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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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