“No School!” he shouted, his words clear and audible as he desperately wanted to get his point across, “Swimming”, he added.
As we reached the bottom of the stairs, Rhys’ chanting of “No School!” continuing with every step, he approached the wall.
“School” he said, placing his finger on the chart.
“Yes Rhys, school. Then judo. Then swimming” I confirmed, touching each picture in turn, “Two sleeps”
It didn’t make him happier, but it made it clearer.
The calendar is a new addition to our home. It is a communication tool to help my son understand what is happening that day, and what is planned for the rest of the week.
Because Rhys actually likes school. He jumps in the taxi every morning and runs into the class each day. It is the understanding of what is happening that day that creates the anxiety. The fixation of an idea in his mind is what is hard to change it is what creates the tension.
This calendar is the key.
Well I sure hope it is!
The calendar we have used is available to purchase here.
To read more about the use of schedules you can read a step by step guide or explore further strategies across other pages on our site.
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!
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.
“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 … 🙂
“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!
🌏🌏🌏🌏🌏🌏🌏🌏🌏🌏
An Autism Blog creating awareness one story at a time
