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!

🌏🌏🌏🌏🌏🌏🌏🌏🌏🌏

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My perfect boy in an imperfect world ❤️

Guest Post by Lauren Morfett

Everyday I ask myself was I the best mum I could be today
Did I help you learn what you needed to through play,
If you could tell me would you say that I could of done more, 
I do try to play with you but sometimes you just want to keep lining your toys on the floor. 
 
It kills me that you get so angry and upset,
I know I haven’t got it all figured out yet, 
I would love to be able to see the world through your eyes, 
To know what is hurting when I can’t stop your cries.
 
Sometimes I grieve for the things you will not do,
Even though I would never change one thing about you, 
It just makes me sad to see you struggle and regress,
I feel like my heart is being ripped in two whenever you are in distress. 
 
I love watching you jumping and spinning around,
I love that even with no words your voice is my favourite sound,
Your such a happy boy who deserves the best,
Your a star Isaac who shines so much brighter than all the rest. 
 
I hope you know that even when I am tired and stressed, 
The day you were born we were truly blessed,
Tonight I will wrap my arms around you baby and just hold you tight, 
There’s always tomorrow for me to get it right ❤️

Lauren Morfett is a mum of two learning every day about the beauty of autism. Isaac is 4 years old and an amazing kid who has taught her more about this world than anyone she knows. It can be hard and it can be a struggle but when he smiles everything is worth it ❤️

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Home is where the HEART is!

Guest Post by Emer O’Hara

There’s no place like home, there’s no place like home, there’s no place like home!

These famous words from Dorothy in The Wizard of Oz have never rung so true in these unprecedented times we find ourselves in. Home is a haven, home is our safe place, home is where the heart is. But what happens when this safe space, this safe haven is all your non-verbal wonder understands. This is the home we have tried our very best to create for our 7, almost 8, year-old beautiful boy. 

His space in our busy family home of 7! (plus not forgetting our new puppy, Griffin). Home is chaotic, full of life, full of madness, full of jest, full of happiness and, sometimes, full of fear. Fear to think what might happen if we forget to lock all the doors and windows, ensure the back gate and front gate is securely closed, car keys are hidden and someone we trust (if not us) is constantly watching over our very own Buzz Lightyear! His safety is our first concern 24/7. This may sound restrictive, may sound overwhelming or controlled but yet it is our safe haven, a world which we have created as a large family, a home where we feel happy, a home where we can be free.  We have even moved 11,384 KM from one home in Singapore to another home here in Ireland but the essence of “our” home structure despite being in a different continent is still the same.  

This is a time in history where we hope all families can find their freedom, their `’tribe”, their happiness within their family homes. No-one could have imagined how this virus would change our existence, would change our everyday. We felt that way when our son was diagnosed with Autism, how would our days be spent, how would we protect our family, would we be able to do enough to keep him safe? The answer is yes, the human spirit, the human core, our basic instinct is to protect the ones we love whatever it takes. Having a child with different needs helped us clarify and remember this fact. 
Perhaps for some, COVID-19 may have awakened that clarity.

No judgement, no pleas for change, no words of wisdom only an understanding we can’t do things on our own. Life constantly shows us that. Change is inevitable, change is refreshing, change is evolving and most importantly we too must change to survive. There is no escape from this; we are thankful for the frontline staff who work tirelessly to keep us safe but they can not do this alone. Stay home, build your kingdom within your walls, feel it with love, music, laughter, poetry, dance, planting vegetables and Art. Let change be a word that inspires you rather than fear taking its hold!

Painting of Samson (his sister Hope found joy in ART during the lockdown and this is her version of her baby brother)

In my early days as Mama (17 years and counting these days), I filled my home with busyness, I ruled the roost with endless lists of things to do, that was a happy home I thought.  How this has changed; now home is where everyone living in it is able to feel safe and creates their own haven. For our two teens, it is chatting with their friends from around the world on SKYPE, for our eleven-year-old daughter, it is drawing, baking and watching her favourite Youtube videos, playing Minecraft and Homeschool in Heel’s day!! 


I must admit this Mama enjoyed that day too!!

Heels

For BuzzLightyear, our non-verbal wonder, it is digging up our garden (actually that would have upset me in the past but now well our new garden does need to be dug and re-levelled by someone) and walks by the beach or in the forest (all within our 5 km boundary that is). 

Max & Samson (he ain’t heavy he’s my BROTHER!!)

For us parents we are enjoying sitting in the garden, reading, wishing for red skies at night (soon to return we hope). Its been a long winter! We are trying our best to keep the calm within our walls yet aware Mother Earth is aching.

Red Skies

From the O’Hara Safe Haven to yours we conclude with this quote (and a lovely photo memory my Brother in Law snapped the last time he visited us from the UK). Oh, how we wish we could see family overseas again soon 🙁

“Many people spend too much time trying to be the captain of someone’s else’s boat. Learn to be a lighthouse and the boats will find their way”. 

LightHouse

Acknowledgements for images: Robert James O’Hara (LightHouse)


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Worry vs Wonder

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

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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.

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