Tag Archives: Autism

Writing for Chocolate

November 25, 2020 AMe

I sat on the cold, hard floor, my phone in my hand displaying a picture of a writing book followed by a piece of chocolate.

“Rhys, First writing then chocolate” I stated, pointing to each picture in turn. It was the tenth time I had muttered the phrase but each time I had remained calm and consistent, while Rhys remained stubborn and resilient.

There was a goal in mind, and it was even more important for me to push forward in progress due to school closures across the country. Covid had taken its hold and we had been confined to our house for the past three months, with no sight of change or the reintroduction of education. In the absence of formal schooling I needed to step up. I needed to develop and teach my son.

“Rhys. First writing then chocolate” I said once again, knowing that the reward needed to be big to get my son to even consider doing something out of the norm. The same response was returned, a scream of frustration and refusal to follow through in my request.

I looked towards the bright digital display on the oven, I had been persevering for over twenty minutes, with not one of us willing to cave into defeat. I hadn’t introduced anything fundamentally new in months.Coping with everyday life had been the priority, but now things were going to change, we were going to push through. The first step was always the hardest, the introduction of a new routine or developmental need. I knew that this was the worst bit, it would get easier. I just needed to stay calm and strong.

I stood up and opened the cupboard, taking out a mini bar of Kinder chocolate, realising that the image of the chocolate wasn’t enticing enough. Sitting back down on the hard surface, I placed the book and pencil in front of me, and in Rhys’ line of sight. I then repeated my request, but with an addition to what we had last time. “Rhys, writing” I said pointing to the picture on my phone and then pushing the book forward in his direction, then I said the words “then chocolate” pointing to the picture on my phone, then holding the physical chocolate in front of me. Rhys saw his reward immediately, and lunged for it, but I was quick.

“Rhys writing then chocolate” I said again, pushing the chocolate out of his reach and placing the pen in his open grasp. I then guided his hand to the page, and he traced over the letter ‘L’ with physical frustration and the anger from losing the standoff. Immediately I gave him the mini kinder chocolate. “Well done, writing finished, now chocolate”.

Rhys consumed the chocolate in one bite.

It had taken forty minutes to get Rhys to trace a single letter in the book.

Two hours later I was seated once again on the hard kitchen floor, my phone in my hand and the book in front of me. “Rhys, writing then chocolate” I stated, pointing to each picture in turn. With the memory and taste of the chocolate still in his month, Rhys took the pen and drew another ‘L’, then looked at me, “Chocolate” he said, and I handed him his reward.

Although a teacher or health visitor may not advocate the use of chocolate as a reward, that is where I have the advantage. I can bend these societal views and offer my son whatever reward will get us over that first hurdle. After those first few challenging days, I started to change rewards, to bubbles, or an icelolly. The length of time Rhys started to write extended over time through perseverance and consistency.

That was five months ago.

I stood up this morning to get a cup of tea, and walking past the lounge I caught sight of Rhys sitting at his little table, pen in hand doing his writing. It had not been prompted by myself, a task he had gone and done himself. Those forty minutes, five months ago that I sat on the same kitchen floor, were worth every second to see Rhys this morning.

A change takes time. The implementation of a strategy takes time. Often it is painful and tough and moments of wanting to scream. But I hold that all inside, remain calm and persevere. Seeing my son independently taking himself to do writing, is proof that it is all worth it.

Get your pictures out and try the First-Then strategy.

Autism Strategy

The Car, The Stick and The Tennis Ball

November 24, 2020 AMe

I sat on the floor of the speech therapists office. She sat opposite and looked at me.

“It’s ok” she said.

It was Rhys’ speech and language session. The third in a block of four which we had waited six months for, but Rhys was not there. He had not been in any of the sessions, leaving me to sit alone, stressed and trying to think of a way to get him to come into the room. I could see him through the open door, he sat in the waiting room on one of the big blue sofa’s, his number flashcards in his hands, each one being moved as it was counted.”What is your biggest challenge at the moment” she asked.

It was such an open question. Everything was a challenge, and I had no idea of where to start or even articulate the complexity of our current situation, so I just said the first thing that came into my head, “I just want to be able to leave the house!”
It was the biggest thing for me, and the most simplest action for any other family.

“What is stopping you” she asked

“When we walk out the house” I started to explain, “Rhys assumes we are either going in the car, or sometimes up to the park, but we will actually be going across the road to the school. It ends up with him on the floor in meltdown, because he thinks we are going somewhere else”

“How do you let him know where you are going?””I tell him” I responded.
She looked at me and repeated a summary of our predicament. “So when you leave the house, there are three options. The park, the car or across to the school?”

“Yes, and I tell him where we are going, but he wants to go somewhere else”

“I want you to go home and get three objects. A toy car, something to represent the park, perhaps a ball and then something for school” she explained. “When you leave the house, take the object representing where you are going, and place it in his hand and state clearly where you are going”

As soon as I got home, I started searching. I found an old blue car in the bottom of a drawer, and behind the door I found a tennis ball, the perfect object for the park. School was difficult, and I could find nothing to represent it, so I settled on a colourful stick in the hope that it would work.

An hour later, I needed to walk across the road to collect my eldest from school. Ready for a full meltdown, I nervously bent down to Rhys’ level and placed the small stick in his hand. He grasped it, feeling the edges press into his soft palm.

“Rhys, school” I said.

I then took his hand and nervously walked out the house. He collapsed to the ground, the stick in his hand in the same way he did every day, but I persevered. I pressed his hand against the stick and stated “school”. It continued to be hard, but I continued with the process and over the next few days, the objects started to associate themselves with the activity.

A week later, I placed the stick in Rhys’ hand, stating the activity in the same way I had done everyday, “School”. He held the stick in his hand and looked down at its colours. I opened the front door, took his hand and we walked across the road and down to the playground. All the other parents stood chatting amongst themselves. I stood with my son, his one hand in mine and his other clasping the little coloured stick. He was smiling.

No one looked at us. They didn’t look because for the first time we stood calmly, both fully aware of the sequence of events. I wanted to stand up on the table in the corner and announce our accomplishment. I was beaming with pride inside. We had made it across the road, not a meltdown, kick or scream in sight.

Those three objects saved our lives. They helped me communicate with my son. We soon progressed to pictures, and still use pictures today in new and complex situations. But today we leave the house like any other family, announcing our destination verbally, with not a tear in sight.

I still have the toy car, the tennis ball and the stick. They were three objects that represented activities to Rhys, but today they are objects which represent so much more to me. They represent a breakthrough. The journey forward and finding a way to communicate with my son.

Click here to get a step by step guide on using objects of reference to engage with your child.

Autism Strategy

Strategic Choices

November 23, 2020 AMe

I feel my hand being pulled, and I look up to see Rhys. Rhys is three years old and non-verbal. His method of getting what he wants is by dragging me by my hand to the location. I always know what he wants.

A week ago we moved all his normal requests out of his reach. My top cupboard now contains plates and bowls alongside packets of ricecakes and crackers. But the point is that Rhys now has to ‘ask’ me for them. He can’t just help himself from the bottom cupboard whenever he wants.

I let him take me to the kitchen. He makes no eye contact or any sound, just leads me to the fridge and stands there waiting – his face turned away from me, just waiting.

I know he wants an apple. That is what is in the fridge. But instead of providing him his demand, I crouch down to his level.

“Rhys, apple or orange?” I ask, holding out each of my hands containing one of each of the imaginary fruits.

Rhys makes no acknowledgement of me, just stands still, face turned away, waiting for his apple.

I try again, “Rhys, apple or orange?”
I purposely use his name to signify that I am directing my question to him, and follow it with the minimum of words to remove any complexity or confusion.

There is still no response. Not even a movement or look in my direction.

“Rhys, apple or orange” I say again, remaining calm, making sure the words are clear and projected towards him. I then click my tongue to try trigger a reaction, he responds with his eyes flicking towards me for a split second.

That’s all I needed. A split second of eye contact. The beginings of engagement.

“Apple!” I announce excitedly, and take one from the fridge. I crouch back down to Rhys’ level, and he sees his request in my hand. I bring the apple up in line with my face and clearly state “apple” associating the spoken word with the object. Rhys gives me no eye contact, it is difficult and uncomfortable for him, but his eyes meet the apple and my facial movements can be seen out of the corner of his eye.

As the months and years go by, I continue to crouch in front of the fridge, and over time I get longer periods of eye contact, which finally mature into a vocalisation, a little scream for his requested item. Every time I say the word ‘apple’, and another year later Rhys says “aahh”.

Another six months, after continually emphasising each syllable of the word, Rhys strings together the word ‘apple’. Our first word which is something that is truly amazing!

However after all that hard work, Rhys had eaten so many apples that he stopped requesting them. So we started all over again, not giving up.

Oranges are now his fruit of choice!

He will forever keep me on my toes!

Follow here to get a step by step guide on using choices to engage with your child.

Autism Life

The Club of 3am!

November 20, 2020 AMe 1 Comment

Being an official member of the 3am club, I want to introduce you to the top 20 realisations of getting up before the sun.

You begin to ponder whether 3am is actually the middle of the night or just very early morning!
Telling your son it is still “bedtime” is just a waste of energy, you are experienced enough now to know it is a waste of time. They are awake and to them the day has begun!
Cbeebies only starts at 6am and although you have Amazon Prime and Netflix, replaying the same episode over and over again takes effort and engagement with your child. Engagement isn’t law till after 7am!
It is difficult to distinguish between whether you are just really tired or actually ill. Both feelings blur into each other and your brain lacks the capability to segregate them!
It does not give you more time to do things! Efficiency and tiredness are not multiply exclusive.
Five coffees before 7am has no impact in preparing you for the day, just makes you pee ten times more before breakfast.
You eat breakfast at 5am which means lunch is moved forward to 10am.
You eat more due to running out of mealtimes with dinner shifted to the earlier slot of 2pm!
You realise that a walk (to try and get some air) only leaves you panting like a eight-five year old on her weekly trip to the Post Office!
In an attempt to push forward with the day, the eighty-five year old over takes you on her errands, so you give up and rest on a park bench. Sometimes you add a nap!
Everywhere looks suitable for a nap!
While you have a wee, you place your head on your lap and feel a sence of calm pass over you. Sleep feels good, you could sit there forever!
You umm and aah more than normal on a work conference call, attempting to perceive yourself as virtually conscious and “in the room” while actually sitting in yesterday’s pants and lying curled up on the couch motionless! Loose woman is on in the background on mute with illegible subtitles blurring across the screen.
You lack the ability to talk and find yourself making up new words, like ‘decisioning’, and believing they exist.
You feel no guilt in thoughts of punching Karen in the face when she says, “I don’t know how you do it, you’re amazing”. The fact is we may look like we are, but realistically we would be more sober after knocking back ten gin and tonics!
The culprit of the 3am wake up does not get affected by the lack of sleep, with energy levels continuing to increase exponentially throughout the day. This really starts to tick you right off!
You have no energy to keep the 3am child up, as the evening draws nearer, the child passes out early starting a vicious chain of events whereby they wake up early again and turn 3am into the new norm!
Takeaway for dinner on a 3am day is unquestioned.
You only manage half the takeaway because eating takes effort you just don’t have.
The children’s dinner takes all your effort to just throw a hot cross bun, pate crackers and a yoghurt on a plate, but your eldest son still looks up at you, gives you a cuddle and says, “It’s ok, you are still a good Mummy and I love you”. Nothing will beat that!

Rhys may have given me exclusive access to the 3am club, but I know I am not the only parent out there with those rights. 3am is just a time, and tonight I will be in bed by 8pm catching up on shut-eye ready to take on another day tomorrow.

Night-night.

Autism Life

The Silent Mattress

November 19, 2020 AMe

Umizumi is playing on the telly, with Bot displaying the task on his belly while Geo and Milli threw around some shapes and patterns to solve the problem at hand. I leave Rhys and his sister to the entertainment, their big eyes pulling in the light from the digital display.

As I get on with my house chores, I pause and listen. That tranquil sound we hardly ever hear, but is the top of the Christmas list, emanates through the house – the sound of silence! I continue to tidy the kitchen, but that feeling of concern, over too much silence, suddenly engulfs me. I put down the dishcloth and go back into the lounge to check on the situation.

As I walk into the room, Rhys is not in my line of sight, but turning around towards my daughter, I see her sitting still on the couch. She looks up to me “I’m stuck Mummy” she says, and I smile at the scene in front of me.

Rhys, too exhausted to continue, has passed out, across his sister’s lap. A comfortable spot in his opinion, but a slight bit of inconvenience for his newly found mattress!
“Dont worry Jessie” I say, and lift Rhys from her lap.
“I was looking after him” she says, her big brown eyes looking up at her brother now passed out over my shoulder. “He wanted to sleep on me”

With her pure little heart watching out for her brother, she curls her legs back up under her body and turns back to her tv show, content that her duty is done.

We have to all look out for each other even if it is just giving your lap up for a sleepy head! Engagement and bonding comes in many different ways and sizes.

A&Me