All posts by maggs.hay

Autism Strategy

Autism Sunglasses: Fighting the Glare or Hiding the Stare?

Sunglasses!

They were not one of the suggestions or points the Peadiatrician referred to, four years ago, when we all sat around the table.

The words Autism Spectrum Disorder were said and the diagnosis finalised. The answer to my son’s differences was given a name, and I was meant to feel better about it. But the words were not what mattered to me. What mattered was the support it would give him, to be himself, in a world that made it hard to.

“We need to put in place the strategies, the scaffolding, to support Rhys and allow him to gain his independence” were the words spoken by the Peadiatrician, once the diagnosis had been confirmed by a inking on her lined pad.

And so I learnt the strategies and I started to build the metaphoric scaffolding.

I listened to the professionals, and Rhys met milestones in his own way.

But no one mentioned sunglasses.

It happened by accident. The way a lot of successes have happened on my parenting journey. The push to have one last go, or just winging it at times in hope for a breakthrough.

When I placed sunglasses on my son’s face one hot, sunny, bright day at the age of four, a calmness overcame him.

It was a few months later when I spoke to a woman who was autistic, and it all made sense.

The bright summer light was too much for my son, and the glasses were doing their job in dulling it down. A sensory overload that diminished instantly through the shades.

But even more interesting, she told me how sunglasses provided her with a comfort. A safety barrier from the expected social eye contact. She could be herself behind them.

So every summer the sunglasses come out of the drawer and are placed on my son’s ears. The sensory tension from the eyewear is tolerable, because of the advantages they give him.

So remember. When you hear strategies and tools for coping in this scary world. It is often the things you least expect.

We see ear defenders and fidget toys, but often the coolest gadget of all is the one that is most needed…

… a pair of sunnies to frame a blonde mop of hair!

#autism

Autism Strategy

Autism Choices. The Way to Communication.

Choices.

At the age of two, we had our first speech and language appointment. It was pretty noneventful, but the speech therapist did give us one piece of homework to take away and implement. It was something we would use for many years and still use today. It was to encourage engagement, the first step to communication.

At the time Rhys would take us by the hand to the item he wanted. It was his ultimate way of communicating his needs. This would be the fridge for an apple, the kitchen cupboard for a rice cake, or the telly for his show. Most things were within his reach, so he would often just help himself, gaining his independence just like others his age.

But he didn’t talk. Not a sound. Not a mama or dada, or grunt or squeak. His arm-guiding method met his needs, with no requirement in his world to do anything else. The choices were going to change that, and we set about implementing them straight away.

The instructions were to put everything Rhys asked for, or currently obtained himself, out of his reach. So we moved the crackers, rice cakes and breadsticks into a top cupboard. The apples and oranges were already in the fridge fruit drawer and safely out of his grasp. We became a house with everything in the wrong place. Like when you go to your granny’s and while making a cup of tea, you struggle to find the cake knife, and eventually find it in the top cupboard wedged between the tub of flour and a hairdryer. We were now an old lady’s house with rice cakes alongside the plates and bowls, and raisons amongst the teacups.

We always had this instinctive sense of what Rhys wanted. There was only a handful of food items he ate and other activities were limited. This change was to get interaction between us and Rhys, and encourage him to ask for what he wanted rather than taking us to it.

As soon as we had rearranged the kitchen, we put the strategy into action. After being dragged to the fridge, I bent down to his eye level, fully aware of his non-verbal request for an apple. “Rhys, apple or orange” I said, gesturing each choice with each empty hand. He stood staring passed me towards the wall, no engagement, just the view in his mind that we were at the fridge, the location of his request.

I crouched there for ages that day, down at Rhys’ eye level, my calves burning, my determination strong. I was not waiting for him to perform a miracle, a verbal request for an apple, I was just waiting for a flicker of engagement. There was no magic formula, just time and hard work. It was hard that day, and every day after that. But it happened and was the start of a journey we had embarked on. That day I got a split second of eye contact, and that was all I needed to reward him with his request, an apple.

Over the years, I persevered. The response to choices increased from split seconds of eye flickers to second long moments of engagement, and slowly over time a sound was emitted that slowly formed the letter ‘a’ and later ‘apple’.

As soon as we got that first word we added more words to his request, prompting Rhys each time, and flooding him with praise as we handed over his requested item. Four years later, Rhys will now request with the words “I want orange please Mummy”, although prompting is often still required.

But life has a way of noticing when you have succeeded at a challenge, found a method that works. I walked into the kitchen, today to find my little boy now able to reach those high out of reach places from years ago. He independently opened the fridge, took out an orange, and turned to me with a smile on his face. His non-verbal communication clearly stating “I got it myself – screw you and your choices” 🙂

But I know that cheeky gesture is a form of communication we never had before. He was proud to ‘help himself’, and we needed to reach this point sometime, the time where he is growing up and wanting to do things on his own.

Our little independant boy.

🍏🍎🍊🍎🍏🍊🍎🍏

You can learn all about how to use choices from our strategies.

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 Life: A different kind of Hard

To the parent complaining about the variety of choice in school meals. I have no comment. I am just relieved that my son is eating, even if his meals each day are identical to the day before!

To the mum who is worried about the loss of a school cardigan, and circulating WhatsApp messages for everyone to check their children’s bags. I’m sorry I never replied, cardigans don’t feature on my list of priorities, because just getting my son to wear clothes, is my main objective. No school wants a naked attendee!

To the teacher who questions why I forgot my daughter’s reading book, the book which should be returned on a Thursday to allow a 48 hour quarantine. I’m sorry, but I was writing an annual review submission, for my son, my seven year old whom I would love to hear read, but has not met that milestone, yet!

To the father who posted a video of his one year old son, and the word “daddy” being spoken so clearly and confidently. I’m sorry I didn’t comment, but the pain in my gut was so strong, because I never had that moment. And when I did, I was too scared to post it on social media, because my son was five years of age!

To the crowds of parents who meet up after school or on weekends, and drink coffee while their children run off and play. I’m sorry I am unable to join you or sit and relax with a mug of my own. I need to watch my son constantly. He may decide he is finished and walk away, because that’s the way his mind works.

To the grandparent who rolled her eyes while I sat on the supermarket floor, the one who tutted and said the word “discipline” under her breath. I’m sorry but I have no words to respond, because my attention is always on my son and how I can help him. But I would like to sit her down and educate her, and highlight her ignorance.

To the other parents like me who raise their glasses to achievements that are so small to others but so huge to us, I’m sorry we don’t shout louder, I’m sorry we don’t celebrate bigger. I’m sorry we let those others get to us.

I will cook pizza for every dinner. I will loose every cardigan. I will forget every reading book. I will work for hours on my son’s speech. I will sit on any cold floor to provide support.

Because every time I prioritise my son over the mundane, we see achievements. We see milestones gained. We see accomplishments.

We have bigger things to fry on this side of the fence. Come over this side anytime to see how we do things.

Because our hard is harder than any lost cardigan!

Autism Life, school

Autism Annual Reviews: It’s a Joint Approach

It is tough having your own development and progress analysed and dissected.

It is a hell of a lot harder when it is about your child.

I have been to many annual development reviews for my son. Some I walked into happy and confident, but left in tears, with a sick feeling in my gut and emotions that took months to heal from.

However, the last few years I have left feeling empowered and motivated to strive forwards to new targets and goals.

Annual reviews, for special needs children, vary extremely and unfortunately it is down to the people who support your child, their ability to communicate, support and collaborate together towards a common goal.

For Rhys we are always honest. We sit down as parents before every review and we discuss the truth – nothing sugar coated or missed, everything factual. We discuss what we want Rhys to work on, where we are not seeing progress and where we need help as parents.

Then we send the black and white text to the school, our submission for review.

Reviews are tough, they highlight the struggles, they are the formal way of showing how far your child is behind their peers. But they also shine a light on the achievements and goals they have met over the year, and whatever we need to do to get more of those moments, is what we strive for.

Every review we focus on Rhys and what he needs, or how we can work with the school to smash new targets.

We are lucky.

We have a great school setting and support for him, where school and home can blend into one. Where his teachers know all about his family and out of school activities, and we can work with the school to jointly focus on the same elements.

But it has not always been that way. I have left previous reviews and meetings feeling the need to throw up in the playschool gutter like a cheap drunk who can’t handle their emotional booze!

It took time and setbacks to find the right setting for Rhys. The support we get now was not handed to us on plate, it was fought for and as a result of set backs and tough emotions, we found our way.

The annual review is there for parents, teachers and professionals to ensure the best for their child and their needs. If your child is not central to those discussions or you as the parent are not getting what you feel is in the best interests of your child, you are part of that review and have a equal say in changing that.

Make sure you fight for your child. Prepare yourself for the review. Focus on your child’s needs and how you can all work together to achieve it.