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Autism Life

Autism Futures Are Just a Bounce Away

The group of kids were older. I estimated around fifteen or sixteen years of age. There were about ten to fifteen of them, all with one goal in mind and the determination that no one would stop them.

The tall one shouted, he was loud and vocal, but I didn’t turn my head, I continued to watch.

The wall was in front of them, about eight foot high, leading to a platform where you got a full aerial view of the park. The ultimate superior position a group of teenagers would want to claim as their victory.

I watched.

The trampoline was at the bottom of the wall – a purposely positioned stunt for jumpers who had the skill.

“Lift on three” the boy shouted, and they crouched down and let a girl use their thighs as steps while being lifted to the eight foot height. As she claimed her position on the elevated level, the cheers erupted before the next person took their position.

The teamwork was structured and executed with precision. Each person lifted or bounced up to the platform.

As I became engrossed in the scene I forgot about my son for a second, and only realised when he came into view. He had started to jump on the trampoline alongside the group. Jumping in a position of risk that someone being hoisted upwards may fall or harm him.

I rushed forward quickly, but was too late. One of the boys had walked forward and taken his hand. He used no words, but led him off the trampoline to the one adjacent, smiled and went back to his group.

I nodded and thanked him, but I got no response.

It took ten minutes for everyone to reach the platform. A cheer at every successful teammate making the ascent. The smiles were infectious, and I felt the pride in their hearts, and clapped in celebration with the crowd.

We were at the trampoline inclusivity session. Most of this group of teenagers had additional needs. They were children who had been labelled as having social challenges. Communication difficulties. Problem children.

But I saw none of that.

I saw a group of young adults who were kind, caring, social, fun and most importantly teammates. Not one of the group had been singled out or excluded. Their aim had been to get every one onto that platform, and they had succeeded.

I watch this group of kids every week. Sometimes they play tag. Sometimes they climb. Sometimes they jump. But I also notice that they are always looking over their shoulder to check they have never left anyone behind.

Because they are a team.

Today Rhys was jumping with two other children from his class. Not one word was being spoken. They just jumped happily alongside. Their challenges ten years behind the group I had been watching.

I hope one day they will be helping each other up onto that platform. I hope their future is as exciting as what I have just watched. Because they are already smashing down barriers which have been putting before them. They are changing the world in their own special way.

Who knows what will happen in time!

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 Shopping

Autism, Shopping, Obsessions and Chocolate Cake!

When your son shouts “Shopping!” at 6:50am, you forget about a lie in, pull on yesterday’s joggers, and get your son dressed. You react to a verbal request with no hesitation. You do it because you have spent years waiting for your son to talk. Years crouching down, holding up picture sequence cards and trying to work out what your son wants. Years praying to hear his voice, the tone, the amplification, the bit of his personality that you have waited to get to know.

As you turn into the carpark and watch his face light up at the Morrison’s sign, you feel a lump in your throat. You feel emotional, because you remember the blank stare he always had across his face, just looking at the back of the car seat in front of him. No pointing at the trees flying past, or screams in excitement at the sun as it followed our journey from the sky.

As you step out the car and take his hand, you well up when you ask him “Rhys, carry bag?” and he takes the shopping bag in his hand. Your son who could not follow any instruction. Where language was just a mash of sounds that he could not process, meaning calm words in scary situations had no effect, or words of warning were as good as not being heard. But he can now understand.

You feel like you have hit the jackpot, when you walk hand in hand into the shop, the shopping bag held in his hand. Yes, just calmly walk into a shop! A place where surfaces beam bright light, strange beeps and pings hit the ears and vibrations of trolley wheels penetrate the body with pain. An environment where you have sat on the floor so many times. Your son in an uncontrollable meltdown, kicking and screaming in an environment he cannot tolerate. But today you just walk!

“What do you want?” you ask, crouching down to your son’s level, knowing your stuff and how to talk to your son, the years of education you have taught yourself and the snipits of information you have grasped from the limited professional help you have been provided. “Chocolate cake” he says with no hesitation, but waits for your lead. An exchange of conversation you never imagined would ever happen. A moment of exchange between both of you, where you have reached a stage of understanding. The pain of constant strategy, baby steps and the goals it results in, have all been worth it.

As you walk into the bakery isle, you son points to a cake with no hesitation. With no delay of deciding what to choose. You don’t challenge it, you take the cake he has pointed to, the double tier chocolate cake for twelve, when you cleary know there are only five in your family. It is because of his action. The action you spent months and months working on by physically holding out his arm, placing his fingers in a fist and letting his index finger point at objects.

You then let him carry his cake to the self serve till and push the boundary like you have done so many times before. You pray you are not going to push your son too far, too far that things will fall apart and put you back on the floor in a meltdown situation. But without trying you will never move forward, and you know if it fails, you will learn how to adapt for next time. So you instruct your son to scan his cake. You show him the bar code, and let him wait for the beep. You then direct his finger to the touch screen and you both press “checkout” together, and wait for the last beep as you help him touch the reader with your card. Then you punch the air in triumph, because this simple goal for others, is something you dreamed would never be possible for your boy.

As you walk out the shop you loose control of your emotions when your son, holding his cake, in amplified tone, shouts “Chocolate cake” at the security guard. It is only 07:30am, and that has made that guy’s day.

So this morning we had a sugar breakfast. But today was a day where “No” was not an option!

To all those parents who are unable to take their children anywhere. To the parents who sit on the ground trying to calm down their kicking and screaming child. To those parents who feel they are clueless and lost and drowning.

You are not alone.

Keep trying.

Keep hope.

Keep your head up high.

It may not feel like it now, but you are doing an amazing job. You are helping your children find their way. You are creating a foundation you and your child can build on together.

You will look back at your past self, and never imagine reaching the place you are now.

And who knows what the future has in store!

For us, it will be a chocolate cake breakfast every Saturday! Because I want to start every day like we started off today! And I hope you can too!

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.

🕝🕑🕧🕣🕞🕜🕟🕢🕥🕙🕦🕚🕠

TOTS100 - UK Parent Blogs
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Guest Post

I Sobbed For So Many Reasons…

Guest Post by Sarah Halliday

“Hi Mummy”

“Hi Mummy” he said, looking straight at me, as he walked through the bathroom door to find me in the bath.

I stared back at my 6 year old minimally verbal son, mouth wide open, in utter disbelief.

And then I sobbed……

I sobbed because…well…let’s face it, it’s been a pretty difficult year.

I sobbed because it was the first time my son had said this to me.

I sobbed because of the years of therapy we had gone through to get to this point. The amount of hours spent holding out bubbles and waiting for the ready, steady….. GO!

I sobbed because for other families this is an everyday occurrence, but for us it is so rare.

I sobbed because of the countless courses and workshops and appointments I had attended on how to engage and play with my child in an attempt to initiate speech and encourage engagement.

I sobbed due to the many stories I had heard, and clung to, about when other children had started talking when they were 5/6/7 and at each birthday we were still waiting.

I sobbed because sometimes it’s all too overwhelming. The forms, the meetings, the new therapies, the sleepless nights, the forms……

I sobbed because I’m so tired.

I sobbed because sometimes it feels like there’s a glass wall between us, separating us from my world to yours, and some days I just want to smash it down into a million little pieces.

I sobbed because I saw a glimpse into our potential future, where we could talk and engage with each other.

I sobbed because…..it was such a happy moment for me…. full of hope and promise for our future together.

About the Author: Sarah is a mother to a very happy, lively 6 year old boy. Charlie was diagnosed with autism when he was 3 years old and they are still learning everyday. He now has a little sister who absolutely adores her older brother….he’s not so sure … 🙂

TOTS100 - UK Parent Blogs
TOTS100