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Autism Life

Autism Activities: How One Boy Found Judo

The children stood in pairs and took their judo holds, ready for the signal to move. Rhys was in position, standing opposite a boy, who was about the same height, with brown hair, cut short and a reflective t-shirt under his jacket.

But my son wasn’t in a pair. A black belt stood behind him, whose arms came around Rhys, hand over hand as he held the judo hold that had been instructed.

As the signal came, they moved. The physical support for my son guided him in the motion, helping him fight his opponent, until a leg spotted a weakness and the fall rendered defeat.

Not one word was spoken.

The teaching was adaptive, and non-verbal.

But the skill being taught was the same.
The throws and the methods were the same. The desire to learn was the same.

I have been turned from away from so many other activities and groups, with comments like:
“This is not the right setting for your son”
“Maybe wait a few years for when he can follow instruction” or
“We don’t have the funding to support him!”

I see these examples of ableism everyday.

I hear it in conversations. At venues where my son is not welcome. In processes which restrict my son’s ability to participate.

Verbally telling Rhys to do a task, or to sit in line or catch a partner, is not an instruction he is able to easily understand or formulate in his mind.

But why restrict the learning of a skill to one way of teaching? A method where only those able to learn that way can learn?

Restriction is discrimination!

It’s ableism!

Restricting to one way of teaching has meant my son has not been welcome.

Not welcome in many, many situations.

And it means he has been excluded!

Rhys’ judo club is not a special needs club, or a club that has funded one-to-one support. It is just a club which turns no one away. It is a club that wants to develop the skill of judo, no matter what method of teaching is needed to achieve that.

It only takes the commitment to adapt to allow all to thrive. And by thriving we can all look to develop further into a community of strength and inclusion.

There are no excuses to discriminate!

Autism Strategy

Getting your Child to Talk: 8 Alterative Autism Communication Strategies

So your child is not talking. They have missed saying their first word, the milestone of speech, or their ability to understand language. Your Google search will come up with many strategies and methods of encouraging engagement, prompting speech and communicating differently with your child, but there are many other ways you can communicate and engage, from using everyday items around your house to some of the latest technology.

There are strategies you will find and learn from speech therapists which are fantastic in developing communication skills, helping your child to understand everyday requests and helping them to tell you what they want.

I am a strong advocate of these methods. They are proven to work and I have seen the results with my own son. If you want more details you can read of these methods here, where I explain step by step in how to implement them and some real life examples.

But what I found when learning about communication and the tried and tested methods by professionals, is that you have the opportunity to adapt and tweet these methods to your environment. Additionally you can also introduce technological developments into the strategies as we move into a more digital age.

Times change. Our world evolves. Things modernise and although the fundamental strategies will always remain, we can adapt them, mold them and use them in different ways.

Six of these strategic adaptions are detailed below.

Photos

A lot of visual communication aids make use of universal symbols. But there is no rule that you have to use these. The objective is to communicate, and this can be easily done with taking photos of items you use most often or your child, for example doing activities or visiting places.

Photos are great, because with today’s technology we all have a camera in our back pockets with the ability to take the photos wherever we go.

When words are not an option for communication due to barriers to understanding and language processing, a photo tells a thousand words.

Leaflets

Leaflets are a great resource and worth collecting when you see them, or even when you are at a location to store for future.

It is dependent on the individual, but leaflets can consume a lot of space and aren’t freely available when you need them at that split second moment.

However they are a great communication options to add to the collection.

Books

An adaption of the Social stories strategy, books are an amazing tool for communication. A lot of stories for children are based around a specific scenario, for example a trip to the dentist, or the supermarket, or when granny came to stay.

Whether the story is centered around our well known Peppa Pig family or a little girl’s first day a school, they all come with a message and a sequence of events.

If a new outing or visit is planned in for the future, reading a book about the experience is a great way to introduce familiarity about the event and a reference point to relate back to when the time arrives.

Even consider taking the book with you to refer back to, is always a good shout.

Cartoons

Our children love a bit of telly, and although we may think the majority is a load of codswallop and cringe as we hear the theme tune emanating through our television speakers for the hundredth time, there is some value in children’s television episodes.

Not all children’s cartoons follow the model but the majority do. They center around a story or theme and message that is being portrayed.

In a familiar fashion to books, episodes of a bunch of paw patrol pups rushing into the fire station or the poor kid from Fireman Sam getting into a pickle once again, we can use the stories to highlight a new event or activity we have planned.

On our last visit to the beach son, we acted out a Peppa Pig episode about Georges sandcastles, which encouraged engagement, imaginative play and family interaction.

Video

There is nothing better than the video of an activity, attraction or location. If YouTube is not giving you the options you need, search videos by Google and watch a visit to the dentist or local attraction.

There is also nothing more powerful than your child watching themselves on video from a previous visit. Record outings and save them in easy-to-find folders on your phone or PC. Then the next time, instead of using words to communicate where you are planning to visit, you can communicate with the aid of a video illustrating your previous experience.

YouTube

YouTube is an amazing catalogue of resources. Take your pick and you are guarenteed to find a video that will be of benefit to your situation.

A few years ago I was determined to introduce a balance bike to my son’s activities, with the hope that a zoom through the park would be on the cards.

I did everything to demonstrate the mechanism of the push vehicle only to be met with blank stares and a pair of painful quad muscles from attempting a ride on a bike too small for my physical build.

YouTube saved us when I found a video of a child pushing himself around a skate park on a balance bike.

It wasn’t a fancy video, just a ten minute clip of a child riding. But with the ability to repeat the clip, I played it on our television, over and over again, allowing my son to become familiar with the activity and gain knowledge of what the two wheeled piece of apparatus in the corner could be used for.

Familiarity of a new activity or experience is always best shown multiple times to gain awareness and comfort. The foundations of what is expected take away the fear when the real life item is presented.

Webcams

Thank goodness for technology and the virtual power of the Internet.

Previously I would spend hours finding pictures of places and items, then printing and laminating them to allow a method of communication for my son. But there was a great tool that gave him the real life experience from the comfort of his home.

Webcams of beaches, local attractions and public venues are great to allow our children to see where you are going and what it actually looks like. The video gives added value compared to a flat two dimensional picture.

Use Google to search the location you plan to visit plus the word “webcam” to see if you can get a live image stream.

Virtual Reality

Often technology and fancy geeky gadgets can put those less techy folk off, but virtual reality is a great tool and with today’s advances it is easily available for anyone to try at a very low cost.

There are many apps that are VR enabled and allow a virtual experience of the outside world from the comfort of your own home.

However, as a communication mechanism, google maps are one of the best tools you can use to communicate where you are going and give a real life experience of the location without actually going there.

With the use of your smart phone, the only additional piece of kit you will need is a VR headset. If you are not sure this is something you want to venture into or just want to have a go without breaking the bank, the purchase of Google Cardboard will get you into the VR world for only a few pounds.

Google cardboard will give you an insight into the virtual world, but if you want to get a more durable headset, there are many on the market, but I would recommend Samsung gear as a good headset to provide you with all the functionality you would need.

For more information on the use of VR with Google click here.

If you are new to finding ways to communicate with your child who is not yet speaking, have a look at the different strategies here.

Also check out all our posts via the different social media channels below.

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Throw Back

Milestones Worth Celebrating!

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I remember standing in a gymnastic hall. All the equipment surrounded me, the parallel bars, beam, trampolines and other strange equipment that I don’t know the name of.

Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

Kids ran around us joining in with the toddlers open floor session. Some joined in with the songs and their corresponding actions that were being enacted on the open floor. Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

As parents followed their children around the different pieces of apparatus, I could overhear a parent next to me. Her little girl was about two, and carefully tackling the well thought out obstacle course that had been setup by one of the instructors. Her mother held her hand as she walked over the soft mat up to the low ground-level beam. “Come on darling” she said “you can do it”.

The little girl was nervous but reluctantly put her first foot forward, the only stability she had was from her arms which she spanned out on either side of herself to distribute her weight. As she took each step, she came closer and closer to the other end of the beam. Her mother slowly walked next to her, judging if she was going to make it, ready to grab her hand if the wobble became a potential slip or fall.

The mother watched her daughter’s every step, but she only watched with one eye, because her other eye was on the rest of the room. She checked to see if anyone else was witnessing this achievement in the making. Her daughter was in her element, she was reaching a milestone worthy of an applause.

As the little girl took her last step and accomplished the great feat, her mother lifted her in the air, and slightly louder than required said “Well done, you are amazing” then swung her around and looked for the next opportunity for success.

I turned away from this celebratory event and stared down at Rhys. He sat on the floor oblivious to all the people, children and noise around him. I followed his line of slight across the wide open space and up the wall about ten meters away from him. Half way up was a white clock, the numbers one to twelve around the edge.

Out of all the activities, entertainment, and gymnastic equipment, he had chosen the item that had the least relevance to the situation, but an item that meant more to him than any of the things that surrounded him.

I had no hope of getting Rhys to walk a beam like that little girl. I had no ability to even get him to engage with the room. The clock on the wall was his only interest, not the ability to display his achievements of somersaults or dismounts off a low beam.

Since this situation about five years ago, I have overheard many milestones being celebrated by parents. They are being celebrated in parks, play centres and all across social media. A video of a child’s first words, or a little boy initiating a pee all by himself behind a tree because he knew he needed to go!

Rhys is accomplishing so many things, but often I feel that I don’t have enough words to describe the mountain we have climbed to achieve them. It is so hard to explain the feeling when Rhys runs down an unknown path for the first time, or he says “drawing”, taking a pen in his hand with no reluctance, or he understands a simple command like “pass me that book!”

… to others it just doesn’t seem to be as bigger deal to them as it is to you.

It is a feeling of wanting to shout it from the roof tops. It is not like the mother in gymnastics who secretly invites you to share in the accomplishment. In contrast, you want to fly a banner through the sky and publish it in a newspaper. But to others it just doesn’t seem to be as bigger deal to them as it is to you. Their children did all these things as part of their ongoing development. They are not milestones they recorded or celebrated. They just happened!

But that doesn’t matter because they are not their child’s achievements. They are Rhys’ achievements. They are the result of hard work, and I have realised that I don’t need the acceptance from others to confirm that they are worthy of a bottle of champagne, because I know what we have gone through to achieve them. He may have taken a bit longer or a lot longer to get there. But it is not a race, we all do it in our own time.

There is no need to look to others for acceptance that something is worthy of celebrating. We all know that feeling inside when something remarkable happens, and when I look at Rhys, I know deep down he is celebrating with me too.

🕝🕑🕧🕣🕞🕜🕟🕢🕥🕙🕦🕚🕠

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Autism Life

The Life of a Special Needs Parent

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.

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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!

🌏🌏🌏🌏🌏🌏🌏🌏🌏🌏

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