Tag Archives: autism hour

Autism Life, Popular Post

We Are All A Little Autistic!

“We are all on the spectrum”
“We are all a little autistic”
“I get scared in strange places too”
“I am not really a social person”

I have so much to say when I hear those words. I have so much to share and explain.

I have so much awareness to raise on a condition that is part of our lives, part of my son.

I want to respond to those comments. I want to let people know what autism is.

Autism is not feeing anxious about new surroundings, or a child crying because they don’t want to leave their mum. Autism is the strange sound that reverberates through the body, the strange smell of the floorboards, the overpowering vibrations of the crowds running across the wood panel floors. It’s the overwhelming sensory input that means it is impossible to enter a room no matter what reassurance is given.

Autism is working through multiple scenarios in your head, dissecting days out that have ended because it rained that day or I put wellies on my son’s feet instead of trainers.

Autism is never having a play date, because your son doesn’t have any friends.

Autism is when your son is invited to a birthday party, but you have to decline because you know it is a magic show where the magician uses a PA system that cannot be tolerated by your son’s hypersensitive hearing. You make some excuse about a family event, but in reality you just sit at home because you don’t have the words to explain. The birthday invites then stop coming, because you are seen as a parent who never takes part.

Autism is answering for your child because you don’t know how to explain why they can’t answer for themselves.

Autism is answering to a stranger when they ask your son “Hello, what is your name?” because he cannot talk or understand the question. You don’t have the strength to try explain the complexity of the situation, because the stranger is just the cashier in Morrisons who you will never see again.

Autism is taking your children to the zoo, only to have to return to the car after ten minutes because your son cannot cope with the smells of the unknown location. You let your other children grab a treat in the gift shop while you beg for a refund or just forfit the £60 entrance charge. You cry because your autistic son’s siblings have looked forward to this day, but lose out because their brother can’t cope.

Autism is sitting on the supermarket floor, while your son has a meltdown. Shoppers pass you by, looking at you and wondering why you just don’t discipline your child. But you know you just need to sit and wait for the pain to subside. Being there is the only way through it.

Autism is taking your six year old son to swimming lessons, but still being in the parent and toddler class because that means you can be in the pool with him. Parents of two year olds watch you wondering why he hasn’t progressed. You ignore it, you have grown a thick skin that simple stares cannot penetrate.

Autism is planning everything to the most minute detail. You dissect situations that fail and try again and again. Scenarios and plans are so engrained in your head that you become an expert and execute them like clockwork.

Autism is knowing words are not the only way to communicate. You crouch down to your sons eye level and hold up pictures and schedules. Ignoring the onlookers, focusing on the key communication strategy that works.

Autism is panicking when the new taxi to school has a sliding door instead of a swing open door. A change that can set back your son’s education. A situation you have not planned for or envisaged, and stand with waited breath and fingers crossed in the hope it will all be ok.

Autism is hard, but autism is also pride. Pride at what your child can achieve.

Autism is hard, and difficult to explain, but autism is also pride. Pride that barriers can be broken down, and goals exceeded. Where new ways of living can be found, and a strength you never knew existed breaks through from nowhere.

Autism is shock at the things your child can do, beyond any ability of your own. The photographic memory, the association of numbers or the high speed rotation without any dizziness in sight.

So before you comment or undermine the challenges that autistics and those supporting them face, ask a question instead. Ask for information, ask how you can help, or just smile and say, “You are doing ok mum, you are doing great”.

Because autism is not a tut, or a mutter of bad parenting. Autism is life through a different set of glasses, a life we are trying to navigate through where the maps don’t yet exist and rulebooks are still being written.

We are still creating a world where we can all belong, and we need all kinds of minds to achieve that!

🌏🌏🌏🌏🌏🌏🌏🌏🌏🌏

TOTS100 - UK Parent Blogs
TOTS100
Autism Life

When Simple is Hard

“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.

TOTS100 - UK Parent Blogs
TOTS100
Uncategorized

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!

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

TOTS100 - UK Parent Blogs

TOTS100

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.

👨‍🦱👨👳‍♂‍👩🧕👧🧒👶

TOTS100 - UK Parent Blogs
TOTS100