Category Archives: Autism Life

Why I stopped Saying “My Son is Autistic”

April 12, 2021 maggs.hay

“Autism. My son is autistic.” Those were words I said to myself, over and over again, as I tried to let them sink in. They had come as a shock to me, I was someone who had never had any experience in additional needs.

Autism had just been a word I had heard of, but had no context. It had never featured in my life and there had never been a need to research about it.

But my son, who was still the same little boy before the diagnosis, was autistic. This wasn’t a delay or something he would grow out of, it was part of who he was.

“You don’t need to tell anyone if you don’t want to.” said the paediatrician across the table from me and my husband, “that is your decision. You can call it whatever you like. A communication condition or social complex need. But you will have the formal diagnosis to get the support he needs”

As the days and months passed, I only told family and close friends. I felt like I was living in a parallel world where other people’s lives moved around me in a haze while I just thought “Autism, autism, autism”

I needed that time. I needed it to process the reasons for my son’s meltdowns, communication delay and absence from our world. It had come as a shock to the system. A shock I had to take time to process.

I talk about myself and my need to mentally process the diagnosis, even though it was not my diagnosis, it was my son’s. My son was only three, and to him nothing had changed. He still did what he did every day, sorting out his number cards and watching the motion of wheels as he spun them on his toy cars.

On the outside I carried on as I always had.

In the park I would refer to my son by name, “This is Rhys”, I would respond to a stranger during an impromptu conversation. His muteness was easily overlooked. He was only three, where ignoring adults could be easily seen as acceptable.

It took me six months to finally say the words, “My son is autistic”.

I started to tell strangers about his diagnosis when I mentioned my children being at different schools, or when Rhys would gently push a small child aside to get past, or when he would not answer to a question an adult had directed at him.

It started to give me closure, and I felt relief as I started to share a ‘secret’ I have buried away for so long.

It allowed me to share awareness, show people what autism was. My son was just like every other child in the park, the play centre, and the supermarket, and I wanted people to know that.

I spoke about autism whenever someone asked questions about Rhys, it was part of him and something that would grow with him as he got older.

But then something changed.

I stood in the park last week. Rhys spun on the bucket seat, absorbed in the motion of the spin, and I watched him from afar.

“How old is your son?” a lady asked, her daughter starting to climb up the steps to the slide, alongside us.

“He’s six” I answered, “how old is yours?”

We exchanged details of our children, our crazy lives, the local area and the weather. Then we bid each other farewell.

I then stopped and replayed our brief conversation in my head. Not once had I mentioned Rhys’ autism, not once had I said, “He’s autistic”.

I had just spoken about my boy and who he was – his age, his school, his siblings. I realised that I didn’t need to jump in and announce his diagnosis, and give examinations to strangers, or let everyone know. I never give a run down of my other children’s characteristics, strengths and challenges, so why should I do that for Rhys?

I will always educate about autism and talk about it when there is a need, but I feel I have moved to the next phase. Years ago I took time to accept my son’s diagnosis, then I found the courage to talk about it and share his differences, but now I have realised that not every situation is about his autism, it is about him and who he is as a person.

I want to talk about my son. About the amazing things he has accomplished. His cheekiness. His sneaky and quirky character.

He is autistic, but that is not what he is, it is part of him.

Autism doesn’t define my son. Nothing defines my son, except who he wants to be.

Autism Life

The Life of a Special Needs Parent

March 6, 2021 AMe

Special needs parents lead different lives.

We spend a life of searching. Sifting through websites, articles, picking up rogue posts off social media, or a snippet of information from a conversation. Information which will change things for our children going forward.

In the begining we quickly realised that there was no special parenting guide or resource base where everything was waiting for us. You had to find it, and they hide it so well, scattering it in a multitude of places!

We lead a life of fighting

We lead a life of fighting. Fighting the authorities for the best support and education for our children, and then fighting to keep that support. We fight for a referral, and then have to wait months, sometimes years to get the services we deserve, to only get pushed aside with a written report ready to file away with the others.

Our children are discharged from speech and language specialists when they are still unable to communicate or speak a single word, leading to new fight to keep what you were promised.

The documentation is endless. Multiple write-ups of our child’s development, always in a negative tone, visually showing in black and white, all the things our children cannot do, rather than the difficulties that have overcome or the amazing barriers they have smashed down.

We hold legal documents which define the education to be delivered to our children, and then fight the schools to deliver it. Education that is published as free for all, but really it is just for those where it is easy to cater for.

We lead lives of staring and comments. A life where we stand out because our children are louder than others, or attract attention to themselves by shuttle runs up and down supermarket isles or getting super excited at a moving piece of equipment, their hands flapping in a overload of euphoria.

We communicate differently, in ways we have had to research, try, fail and then finally succeed with. Stooping down to our child’s level and holding up pictures or round coloured traffic light cards, to help them understand what is next or about to end.

Stares come from those parents who can just shout for their kids to follow, confused at why we don’t just tell our children through voice commands about what to do. They hold their heads up high thinking they are better parents that us – but we know different, we know how far we have come.

We have to contend with angry parents whose children have been pushed, hit or kicked by our child. We try to articulate that the reason wasn’t out of violence, but rather a form of non-verbal communication, or frustration or sensory overload. We continuously voice our apologies for something out of our control. But those parents don’t listen, they just want justice for their hard, a hard that is so much different to ours. So we start to avoid those places, we steer clear of those people.

We know all about sensory overload, an area which meant nothing to us before. We learn how to help our children manage it, how to notice the signs and places to avoid. It becomes a central reason for the way our children act and how we coordinate everything we do.

Our children can’t go to all the places.

Because our children can’t go to all the places. Some places are too over-whelming. It could be a birthday party, or a catch-up at a play centre, or an unknown location you don’t have a picture for. We decline these places because we know the potential outcome. We know it may not be pretty.

We are however parents who make our own rulebooks. We create new goals for our children, milestones you will never find in professional checklists or folders. We punch the air in jubilation when our children manage to zip up their coats after years of hard work, through the use of strategies and techniques we have mastered along the way.

We high five our partners, keeping our celebrations within our tribe.

We high five our partners when we watch as our child follows a verbal instruction, because we have had years of them not understanding, just sitting blank faced at our request.

We keep our celebrations with our tribe, the parents who know the same struggles. Because there are no words to explain the feeling when your child finally says their first word, years after the rule book said they should. Other parents are past that stage, that phase was years ago, when their children were also celebrating their first step or ball throw. They have moved onto newer and bigger things.

We feel the loneliness, the separation from other families. We talk about our hard to those who understand, because only by living through it, do you know how hard it actually is.

But our children are still here. They may not be meeting the expectations of society, but they are exceeding all of ours!

Special needs parents are taking each day at a time. They are fighting for their kids. They are advocating for their children’s conditions and pushing for inclusion in a world which cuts them off.

And while we do that our children will continue to grow and develop in their own way…

Because..

…the world doesn’t define what our children are to become, our children define the world they want it to be.

Autism Life, Popular Post

We Are All A Little Autistic!

February 21, 2021 AMe

“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!

🌏🌏🌏🌏🌏🌏🌏🌏🌏🌏

Autism Life, Guest Post

Home is where the HEART is!

February 17, 2021 AMe

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!!

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.

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”.

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

Do you have a story you want to share? Submit here.

Autism Life

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

A&Me