Tag Archives: autism speech

Worry vs Wonder

February 11, 2021 AMe

The tears ran down my face. They came from a place of hurt and stress and uncertainty. The result of the feeling of nothingness. A sense of loss. The loss of the life I thought I was going to have. A vision where me, my husband and three kids, would go on crazy day trips together, create memories and do the things that every other family did.

My life expectations had been pull out from beneath me. They had been wiped out of my life plan, my vision for the future. My son had received his diagnosis. A diagnosis, that although would never change who he was, it would change the way I thought our life would be.

I started to ask myself questions.

I started to worry.

The worry was for every day things. The stuff other families just did without thought, but for us would take the planning of a board of directors.

The worry about his education, how he would learn to write, to read and to add up numbers. I worried about his future and whether he would get through high school, and then what? What would he be capable after that? Would we choose mainstream or a special unit? I worried what that all meant!

I worried about small things that were actually such big things.

I worried about small things that were actually such big things. Like whether he would ever form friendships or have a friend. What about the traditional marriage and two point four children? He currently wasn’t socialising, or able to talk or integrate or follow instructions. How would he ever have a friend? Would he be alone and not feel that bond with someone? Would he ever experience the fun, naughty and exciting things that friendships guarentee?

I wanted him to come home and tell me about his day, about what he had done, and where he had gone. But he couldn’t. He was pre-verbal, not a sound to convey or even the ability to converse in any other way to tell me about his daily adventures. I worried that he had been sad, or bullied, or alone, or even had an amazing day. I never knew. My son just stood with a blank stare, and not a word muttered, not a sound exchanged.

I worried about where we could go or how a situation would play out. Often outings were filled with stress, with meltdowns, with stares from strangers who tutted and wrote it off as bad parenting. I lost my excitement due to the worry that things would just crash and fall apart. What reason was there to get excited in what was doomed to fail?

I worried for my other children who had to take this challenge on their own shoulders. Who had to be on the sidelines missing out on things which should be guarenteed as part of their childhood. I worried about how they felt when their brother was in a state of inconsolable distress, and their feelings ignored while my focus was fundamentally on controlling the more intense, urgent situation on the floor in front of me.

I knew we needed to change. I couldnt continue with the worry, the uncertainty of my son’s future.

So we changed.

We shifted our mindset, realising that the future could only be influenced by what we could influence today.

We started to disect every situation, and analyse every step. Me and my family worked together. We striped out the worry through factual analysis and plan execution.

And with that change we started to move forward.

I realised that the only way I could change the future was by shifting my perspective. As I looked down at my big blue eyed boy, with his long blonde surfer locks, I saw a child with purpose. A child who was happy and content and determined to do what he was interested in.

He didn’t care about the stares or the fact he only ate pizza every single night for dinner. He did however care for me. His cuddles and snuggles into me when he was scared, his laughter when I tickled his belly, and his smile when I threw him in the air. He wasn’t worried for the future, he was happy in the present.

I had to change myself, and not keep looking for ways to change my son.

I had to change myself, and not keep looking for ways to change my son.

I started to focus on what he wanted, what that day held, and how we could overcome the challenges which were present in the present.

As soon as I changed my perspective, and as soon as I stopped and watched my little boy, I saw his quirks, his strengths, his warmth and personality. We worked on strategies, which improved his engagement, and over time finally lead to speach. We changed his school to one that met his needs, something I worried about constantly before, where I had worried about what others would think, what others would say.

I turned away from the stares, the comments, the harshness, and looked through the eyes of my child.

I stopped worrying.

I started to wonder.

Through all the changes and development, my boy started to smash down the barriers. He started to meet milestones. Not the milestones in the published parenting books, but the milestones we had set for ourselves as a family. The ability to leave the house, the understanding of where we were going, the engagement between ourselves and our children. My son started to prove the world wrong.

I stopped, and I wondered.

I wondered what the future now held for my son. It was not a worry, it was a wonder of what other successes were on the horizon. What new experiences we would create and enjoy.

It was not a worry, it was a wonder.

Our lives were different now. But that didn’t mean they were worse. Just different.

The tears fall less frequently now, there are more smiles and moments of laughter, as I wonder what tomorrow has in store.

Change your perspective. Don’t worry about a future you know nothing about. Focus on the present and instead of worrying you can start to wonder.

#worryvswonder #fcvblogsquad

Autism Life

When Simple is Hard

February 7, 2021 AMe

“You get the coats, boots and hats ready, and I will do the toilet trips” I said. It was the standard pre-walk preparation we executed every week.

As we all bustled in the small cramped hallway at the bottom of the stairs, with coats consuming arms and hats bobbing up and down as the pompoms got excited for their daily trip out, one little boy was missing.

I looked around the doorway to see my son, Rhys sitting by the window with his book in his hand.
“Rhys, walk then swings” I said as I walked up to him.

“NO!” he screamed back at me, and kicked out, turning into a stiff board that would not be moved.

I immediately pulled out my phone from my back jean pocket, knowing I had to move quickly before anything escalated to a point of no return. I searched frantically through my picture app for what I wanted, but my heart was beating in my stomach. I hoped I had the right images. Images I hadn’t used in years, for a routine we had got so use to executing.

Rhys’ screams and frustration got louder as I finally found a picture of him walking through the forest and a picture of the park. I pulled the two pictures into a sequence, and held them up to him. “Walk then swings” I said, trying to keep calm and consistent with my tone, while the stress built up in my gut.

Rhys reluctantly acknowledged me and I was able to convince him out of the front room towards the front door. The rest of the family stood congregated and patiently waiting for us as I bent down to place each one of Rhys’ wellies on his feet. I was so nervous this would not go to plan, so I moved carefully and gently to try and ensure we were able to move forward and get out for the weekly walk. I held out Rhys’ coat, and he pushed each of his arms into their slots, leaving me to pull the zip up over his body.

I took a deep breath, and placed my hand on the front door, opening it and feeling the cold winter air rush past my bare face. Things happened in slowmotion at first and then it was as if someone had pushed the fastforward on our lives.

Rhys’ hand lifted upwards, grabbed the zip of his coat and pulled. His arms were out of the sleeves within seconds and he ran to the back room kicking out his feet in an attempt to eject the boots from his limbs.

I felt deflated. I felt like we had gone back in time by three years, to a time when this was a daily occurrence. A time when we couldn’t go anywhere. A time when I couldn’t cope.

“Do you want to stay here, and I will take these two?” said Justin, nodding to Jessie and Ewan who stood suited and booted on either side of him.

“Yes, you go” I said.

As half my family left and the door closed behind them, I felt my heart rip apart. We were divided once again, just like we had been years ago when we couldn’t take Rhys anywhere. Where places and activities were too much to cope with.

I walked into the back room. Rhys was sitting on the single sofa, his wellies still on his feet unable to be removed by his small hands. I knelt down by him and pulled each welly from its foot.

“Rhys, swings?” I asked, in hope that I could at least get him out the house, even if it still meant no family walk and just a trip to the playground.

Rhys just sat staring at me.

I grabbed my phone again and quickly googled ‘swings’, and held up a picture of a child on a swing. The image filled the screen of my phone.

No response.

I left the room and found his trainers. Returning to the room, I held up the picture on my phone once again. “Rhys, swings?” I said again, and then held up his trainers. My hope was fading so quickly, and I just wanted to collapse down in tears. Our life was so challenging, where a simple walk was just an impossible task.

But I held strong. I was desperate to try and find a way.

As I continued to show him the swing picture and meet him at his eye level, he suddenly let me slowly place each trainer on his foot, and with a “one, two, three” I lifted him to him to his feet.

“Swings, Rhys?” I asked again.
“Swings!” suddenly came a response.

I carefully put on his coat, my stomach in knots as the stress bringing a taste of sick into my throat,but we somehow managed to walk out the front door. At the end of the driveway, I went to turn left to take us up to the park, but Rhys stopped. “This way!” he said, pulling my hand to the right.

“Ok” I replied and let him take the lead, while I dug into my coat for my phone.

“Justin, wait for us, we are coming!” I shouted as my husband answered my call.

Five minutes later we had caught up with the rest of our family, and I collapsed into my husband’s arms, my body drained of energy, the stress and exertion of effort to get to where we were.

“I don’t know how you did it, but well done” he said, as he slowly wiped something out of his eye. We stood in the field for a few minutes as I got some of my strength back, then we walked forward. We walked onwards as a family, together again.

“I can’t go back to where we were” I said, “we have worked so hard at this”
“We definitely have” my husband responded ” We definitely have.”

As we walked forward, I watched Rhys run ahead. He must have felt as drained as me, but I knew a walk and some fresh air was what we all needed. It had been challenging, but our family walk was all we had at the moment. The only thing to keep us moving forward.

Uncategorized

A New Place To Sleep

February 5, 2021 AMe

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!

Speech

Change Your Question!

February 1, 2021 AMe

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.

🗣🗣🗣🗣🗣🗣🗣🗣

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

Autism Life

Erase the Word!

January 30, 2021 AMe

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

A&Me