Tag Archives: autism mum

Autism Strategy, Day Out, Uncategorized

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

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

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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.

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!