Tag Archives: autistic

Speech

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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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 Shopping

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 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!

🛒🛒🛒🛒🛒🛒🛒🛒🛒🛒🛒

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Autism Life

A Tribe Worth Belonging

Lonely

That’s I how I felt!

It was the feeling of being left behind. The feeling of everyone else being part of a crowd that I did not belong to and could not belong to. We didn’t have the criteria to go along with the crowd. The crowd whose children were running around together, being surprised by new adventures, making their first friendships, talking and conversing with each other in a natural untaught way.

There are so many feelings that overwhelm you when you realise your child is not “the same” as everyone else’s. There are feelings of fear, the unknown, anxiety, hope, upset, stress, and sadness. But the feeling that trumped it all for me, in the beginning, was loneliness.

My group of friends who continue to be everything to me, handed me words of reassurance, “Everything is going to be ok” and “I am here for you” and “He will catch up”. These were the phrases they recited, in the way that every friend would do. My friends have continued to be there for me. They have celebrated our achievements, and they have been a shoulder to cry on when I have had no where to go. But they were also as knowledgeable in autism as I was at the time, when I was beyond clueless.

My friends went on outings together and sat on the side catching up with a cuppa and cheeky piece of cake. Their children ran around within their line of sight. They were probably having the normal parental stresses you would expect, like checking where their child was at all times, and concerns if they fell or lost their friends. But they looked relaxed and enjoying the world they lived in and the progression their child made, in how it was expected to be made.

I often sent excuses to these catch-ups. It was easier than trying to explain that Rhys wouldn’t enter the location they had planned. Or try and describe the meltdown he had experienced the week before, at the entrance, not even managing to get into the foyer. The failure I felt inside not knowing why or how to solve an issue I did not know existed. The embarrassment from people staring at me and me not knowing what to do to rectify the situation, with my main focus being on getting the hell out of there.

In the occasions that I could get Rhys into different establishments, I was not the parent sitting on the side sipping a cup of tea and talking about the latest gossip. I was in constant sight of Rhys. I would panic about him physically pushing a younger child, not because he was violent, but because that was how he communicated – physically. I would be trying to apologise to a parent who was appalled about how Rhys had approached their child, explaining something I actually had know knowledge or experience about. I was too vulnerable to stand up and explain, finding myself apologising and edging away, because I was broken and unsupported in the mist that surrounded me.

At this time Rhys did not have a diagnosis. Autism was a word I had heard but knew just that, the word. I knew none of its context.

I was alone in a world of confusion, and could not even start to imagine how it felt for Rhys.

My friend’s children continued on the recognised path of development, and we moved in parallel, at snails pace. We were extremely behind and didn’t have the stepping stones they had to progress. We just drowned in a world we did not understand or know how to navigate through. I didn’t know where to look for help or information and support.

I stayed behind closed doors for a long time. Battling through the process with paediatricians, speech therapists, psychologists, occupational therapists and ENT surgeons. Just to name a few.

I was alone. This was a norm I had never heard about, with everyone else leading ‘normal’ lives, with the remaining being part of a secret autism society I could not get the membership card to.

It was when I went on the early bird course lead by the National Autistic Society that I started to connect with other parents, just like me. They were just normal families with the same struggles as us and roamed the same places we did (there was no secret group who were hidden away – they were among us). I had found people who I could talk to. People who understood the complexities of autism – from a parent’s perspective. We laughed about things that I would never share with my ‘non-autism’ friends, because they just wouldn’t get it.

I call them my Tribe. A group who are there to support, fight and laugh together over things that other ‘normal’ families do, but also the other things that only we understand and get.

In the UK, 1 in 100 people are on the autism spectrum, and there are many more that are undiagnosed. If you include families in these figures, you are looking at 2,8 million people in the UK with a first hand experience.

You are not alone if you or your child is autistic. Walk down the street and you are guaranteed to pass at least one autistic person. Search famous people and there are amazing individuals who are have changed or who are changing this world in way a no Neurotypical person can.

You will already know someone with a link to autism. I know this because every person I have spoken to about my son has either confirmed that one of their family members are autistic or a close friend or colleague.

Autism is everywhere, and the feeling of loneliness I felt, was short lived. As soon as I lifted my head up and spoke about it, a whole new world opened up for me, and in turn allowed me to enter into Rhys’ world and help him and broaden it into mine.

We need to raise the awareness of Autism. We are not alone in this. We are part of this and part of a world that needs a range of different minds to move forward. Different doesn’t mean unable, different means flexibility, perspective and progression in different ways. Ways that can achieve amazing things.

👨‍🦱👨👳‍♂‍👩🧕👧🧒👶

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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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