Tag Archives: blog

I’m Never on the Bench – I’m Always in the Game

November 8, 2022 maggs.hay

I always envied those parents who sat and chatted on the side at soft play centers, parks, or poolsides. They would catch up on social gossip or chill with the other parents, getting a moment to relax and be themselves.

I have never been one of those people. Well, at least since my children could walk!

When your child will leave a venue, just because they are done. Or go to the toilet at the other end of the facility, because they need to go. Never telling you their intent or agenda, I am always left with a feeling in my gut that no words can describe.

That feeling that your child is missing.

When your child doesn’t understand the concept of waiting or personal space, and cannot advocate for their challenges because words are not part of their repertoire, that’s why I am there. That’s why I am at my son’s side, to be his voice, to show him the direction, to make sure he is safe.

His autism brings challenges which I am there to help him overcome.

It means I am always active.

It means I am always involved.

It means I take part in things I may just be a bit old to enjoy, but get the thrill of childhood memories and enjoy my son’s smile at being his partner in crime.

I have crawled through soft play tunnels and got stuck in the clothes wringers when there was no other way to turn without taking my eyes off my teammate. I have sped down water slides, gripping my son with my legs as he sat in front of me on a blow-up tube. His screams of excitement as he shouts, “Hold on tight” and “Weeeeeee” – statements mimicked from me when I was trying to entice excitement and fun.

Then there are activities I have taken part in on my own. The need to understand the process, the feel, and the method, to allow me to construct a strategy to get my son involved next time or years in the future. I have scaled climbing walls and ridden bikes down steep inclines and taken on physical sports like judo, letting fully grown men throw me over their shoulders and end in their hysterics at my ear-piercing screams.

I have had my limits, but they are beyond the standard parent’s limit. I have taken part to let my son be included. Included for now and for the creation of options in the future.

I am not the parent who sits on the bench.

I am not the parent who drinks tea and talks about the latest series release, because to be honest, my television watching mostly consists of Peppa Pig and Numberblocks. I know nothing about the end of Breaking Bad or which housewife has had the biggest crisis!

But I do know that I am doing my best for my son, and to be honest, having a whale of a time doing new stuff myself.

So get up off the bench and live life. Because living brings opportunity, and opportunity creates memories you will treasure forever.

Our children can experience everything they want, sometimes they just need a little bit of support, encouragement and a teammate at their side

Autism Life

Autism Activities: How One Boy Found Judo

January 23, 2022 maggs.hay

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, Haircuts

Autism Haircuts: Top 11 Tips to Ensure Success

January 7, 2022 maggs.hay

With autism goes sensory processing challenges. And haircuts are the ultimate challenge for all things sensory.

People have spoken about physical pain at their hair being snipped, and others have explained the unbearable feeling as their hair is brushed or combed. These challenges are all before even considering the environment, the noises and most importantly communications.

But success can be achieved when you know the steps to tackle. It is about taking on step at a time, ensuring awareness of the process and what to expect.

Let me share the top tips for haircut success.

Speak to the hairdresser about your child’s needs. I have found them to be very accommodating and keen to help. If they aren’t, go to the other hairdresser on the other side of the road, cause it is not like we are in short supply of options.
After explaining the situation, ask the hairdresser if it is possible to come in 5 minutes before they open. I have never found this a problem, as it only takes 5 minutes to cut a child’s hair, and they tend to always be in a bit before opening time to grab a cuppa or get the different tools out.
Arriving before they open and discussing your child’s needs, lets your child have the salon to themselves with no hairdryers, no fresh strange shampoo smells, and even the opportunity to ask for the music to be turned off and lights dimmed.
Book the top hairstylist. This is due to a number of factors. They are experienced and can provide an excellent cut on child’s head no matter what contortion they put themselves in. They are quick, so less time in the stressful situation. They tend to be the manager of the salon, so something simple as turning down the lights does not need anyone’s approval.
Before going to the appointment, visit the hairdresser a couple of times, with your child. Go inside and have a sit down. Take some photos to show before the appointment. This is all about becoming aware of the environment. Do this at the beginning of the day when it is quiet. You may need to do this in stages, firstly just going up to the door, and working up to actually going inside.
On the day of the appointment, explain to your child where they are going. This can be verbally if they understand, pictures if they want to look at them, or my personal favourite, YouTube clips of a child getting their haircut to provide familiarity of the situation ahead.
Brush your child’s hair before you leave the house. This removes one task for the hairdresser and starts a bit of desensitisation on their scalp. The hairdresser can immediately start cutting as soon as you arrive.
Don’t feel your child needs to sit in the hairdressing chair with a cape around them. Let your child sit where they like. Offer to clean up afterwards.
Distraction is key. Take an ipad, book, chocolate, favourite toy or do your signature crazy dance to entertain them while the hairdresser does her job. You have the place to yourself, so who cares what you look like.
Keep to a simple cut. In my opinion, I have always kept Rhys’ hair in a long surfer cut. It allows for easy cutting, zero styling, and if he does miss a haircut, it is not as noticeable.
At the end provide loads of praise.

You may manage to get your child’s hair cut following the above or you may not. It is about progression and taking one step at a time. However if it doesn’t work, there is an alternative option, and this is what we have now done.

Special needs schools have qualified hairdressers that cut the children’s hair. Phone around the special needs schools in your area, and get the name of the hairdresser that visits the school. These hairdressers tend to be freelance and will come to your house.

Follow the same steps as if you were going to a salon, the pictures, hair brushing and distractions. The benefit of a special needs hairdresser is that they know about things like autism. They are not scared about an anxious child, and accommodate and adapt to your child’s needs. They are also supper quick and will cut your child’s hair in the broom cupboard, if that is where your child feels safe.

I would recommend getting a siblings hair cut at the same time, or if you don’t have one, get a friends child or your husband to have their hair cut. This avoids you feeling bad about a hairdresser coming to your house and your child refusing a haircut. At least the hairdresser will be able to do someone else’s hair instead.

At the end of the day, if all fails and your child finds a haircut too distressing, remember, it is only a haircut. There are a lot bigger worries in our lives and our children having hair halfway down their backs is the least of them.

I suggest reading the below in conjunction with the communication strategies on this site as everything we do is better through communication.

Autism Strategy

Getting your Child to Talk: 8 Alterative Autism Communication Strategies

August 19, 2021 maggs.hay

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.

Throw Back

We will wait for the light, but until then, I will sit in the dark with you!

March 12, 2021 AMe

The house stank of bleach. A two hour marathon of scrubbing and cleaning. No clutter remained, each piece of rubbish discarded, with papers filed and books returned to their shelves.

But it still wasn’t right.

It was like one of those makeover shows. Looking around my house I could still only see the before shot, the one through the grey filter, no sparkles or brightness surrounded me. I felt defeated, the need to find some control in my life when everything was falling apart, but my world still looked physically dull and uninviting.

A cry came from the other room and with a deep breath, I pushed my feelings down into my stomach, I wiped the tears from my face, smiled a fake smile and walked through to my three year old son who had awoken from a nap on the couch. His cry was the only sound he could make, the only method of asking for attention. There were no words or babbles, unlike my friends children of the same age.

He was non-verbal with a diagnosis of Autism Spectrum Disorder. A diagnosis we had received a few months earlier.

But it was not the diagnosis that had changed my current mental state, it was the lead up to it. It was the constant changes in our lives. The change from the lives we thought we would have, to a life that was spiralling out of control. A new path that we didn’t have the map to. A new set of rules we didn’t know how to follow.

Every day I woke with a fresh positive perspective, with a view that each new day would be better, but it never materialised. Each day grew darker, with feelings and emotions bottled up. The need to not lose strengh or show weakness in a world of comparison at the school gates.

I felt so alone.

No one understood.

My friends led different lives, where their biggest worries were of lost jumpers and water bottles, or what day was PE. Had their child got the right pencil case or whose playdate was next?

My worries were greater. The same things which were routine to everyone else were impossible to me.

I worried about how to leave the house without my son having a meltdown. I worried about whether he would ever speak, whether he would ever understand me, whether he would be able to live an independent life.

I couldnt walk into a shop, an activity centre or a church hall, because they were unfamiliar to my son. I couldn’t bend down to his level and explain, or talk him through it – words were meaningless. They were useless to a boy who didn’t know their meaning. We were foreigners from different worlds.

So as I sat next to him, I cried. The feelings I pushed down had run out of space to hide. My body ached with pain from the overload of emotion, where my world was an entrapment that closed in on me.

The cries of excited children ran past my window, calling after their friends, and it made me feel worse. My son silent next to me, oblivious to what I was feeling.

I felt like I had fallen from a place of control and shattered into a million pieces. But somehow I had held it all together whenever in public. No one who understood, and I had not allowed them in to understand.

As I cried alone in my front room, the front door opened. My husband stood in the doorway and without words approached me and took me in his arms. He didn’t tell me it would be alright. He didn’t tell me we would get through it. All those words had been said before and were being said without even saying them.

But he said he was there with me. We were in it together, and he would sit in the dark with me. And we would make it.

And we have.

We have come out that grey. The world took a while to get its glimmer back. It took time for us to work out that path and find the way.

Parenting the special needs way is hard. I know that because I do it, and will continue to do it.

It starts out dark, but it does get brighter, and as longs as you are willing to invite others in, they will sit in the dark with you.

You don’t need to sit in that dark alone.
There are many of us here to do that with you.

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A&Me