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Autism Life

A Cage Fighter or Just a Little Boy?

We are at that stage in my son’s life. That phase where he looks more like a cage fighter than my little blonde haired cutie.

He parts his lips to smile at me, but I am met with a gappy mouth. The loss of his top and bottom two teeth in the space of two weeks, has left him looking like (well if he was ten years older) someone you would not want to meet in a dark alley!

The first tooth loss came and went, with no fuss and was a pretty much a non-event. But things have changed.

Rhys stood this evening and watched his reflection in the window. The massive gap in his teeth reflecting back at him. He continued to babble, phrases from Hey Duggee and Peppa Pig flowing from his mouth in his own little muddled up conversation. He watched his mouth move and the gap flashing back at him from the temporary mirror. As he spoke, the words were interrupted with sobs and gasps for air. Tears flowed down his cheeks, and turning his face to me he whimpered “I’m sad”.

“Why you sad, Rhys?” I asked, trying to take him in my arms, but the comfort wasn’t accepted, and he pulled away, turning to communicate his pain to me with his hands, the words unable to roll off his tongue.

Then placing his fingers to my mouth, he tried to pull at my teeth. His tears rolling further down his face.

“Rhys, teeth will come back” I said, realising his confusion at the change that had happened so quickly. I looked to the table and saw his uneaten dinner. The feeling of biting into his crackers had put him off his food. Lunch lay untouched in the kitchen from earlier, a little boy who couldn’t face the strange sense in his mouth continued looking at me with confusion.

Once Rhys had realised that I understood why he was sad, he let me take him in my arms. He let me cuddle him, while his tears continued to fall.

To my other children the joy of a little fairy bringing a gold coin, in exchange for their teeth, is an event that they will wiggle every second of the day to bring closer. For Rhys, the exchange of money for his pearly whites, is a bizarre concept he is unable to comprehend. To Rhys he has no teeth where there used to be, and that is upsetting.

Rhys’ bottom teeth are coming through, his top gap is just gums. It is a change to the norm, and it will take some time to adapt to.

For now, cuddles are unlimited, while we step through another change in this scary thing called life!

I now just need to go and pull on my fairy wings and grab a bag of chocolate coins. Because chocolate makes everyone a little bit brighter.

🦷🦷🦷🦷🦷🦷🦷🦷🦷

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Autism Food, Autism Life

Move Over Mr Blumenthal!

The chore that every parent undertakes daily – the timely execution of the evening meal. Bring it on!

It always starts with excitement and the feeling of pride. The dream of it only taking fifteen minutes, in line with Jamie’s expectations, but really ending up with a few f’ing hells and fist throwing, in line with Gordon.

Either way, all the legitimate research has clearly demonstrated that the amount of effort and time you contribute to a child’s dinner, is equally proportionate to the speed and accuracy of aim when it is chucked directly back at you!

I failed to read the research!

I decided to coordinate a meal of bangers and mash. It wasn’t fancy, even the sausages were just standard pork, and the peas were good old Lidl’s own – frozen not fresh! I was however proud. Proud that I was making an effort in creating something as a result of my own labour, with more effort than just plying open a cardboard box of beige – which had been extremely successful last night. In hindsight it makes me wonder why I have deviated from the norm!

The smell of sausages emanate from the oven, as I whip up the potatoes with butter into a frothy consistency. Check me out Nigella!

I dish up one plate in the standard arrangement of mash, with sausages on top, peas on the side and all drizzled with gravy. I even make one of the sausages stand slightly erect – purely for my own giggle factor!

It looks amazing, a perfect home cooked meal. My ego is boosted more when my eldest happily accepts it, picking off the from the plate while in his travels back to the daily dose of YouTube. But then I look at the second empty plate and think for a few seconds. My younger son, Rhys, is autistic, and although sausages are a winner – potatoes, peas and gravy are not part of his dietary portfolio.

But there is one thing he does love – cake!

Going the extra mile, I get creative. With all the Heston imagination I can muster, I grab a cupcake case and start to spoon some mash into the green cup. Taking one pea at a time, I add them like sprinkles and finish with a little icing gravy.

I stand back and nod in amazement at my work.

Placing the mash ‘cake’ next to the ‘guaranteed to be consumed’ sausages, I take a deep breath of confidence and proceed to the front room, depositing the meal with pride in front of my son.

“Rhys, dinner” I say, and then pointing to the cake, I add “look cake”

Standing back I watch my son pick up the cupcake in his hands. It’s a bit squishy in texture, but he picks off one of the green sprinkles and places it in his mouth.

I mentally jump for joy as I watch my son, who only consumes a handful of items, eat something new. I have done it, I have found the secret method of new food introduction.

I might write a recipe book detailing different ways to present food. I will call it ‘The Food Disguise”!

But I am pulled from my aspirational dreams with the feeling of mush being forced into my hand. The handful of green is then increased as Rhys proceeds to take each one of the other green sprinkles from the cake and place them in the palm of my hand.

While I stand with a handful of peas, I grasp every ounce of hope that the potato will find its way into the taste test. My eyes wide with the urge to not miss the moment, I see Rhys lift the cake to his mouth and lick the soft fluffy contents.

I hold my breath and then exhale every piece of hope I had. My future recipe book lying crumpled in a virtual heap, a review on the back reading “With every pea comes a handful of mash!’

Rhys holds out his tongue as if it has been coated with poison. Taking the palm of his hand he wipes the potato from his tongue and then immediately discards it on his t-shirt. The cupcake case is tossed to the floor, landing in the scientifically correct way of potato side down!

Going back to the kitchen, I tear open a box of pizza. The round beige meal deposited onto the middle tray of the oven and the knob ramped up to 200°c.

“Ok Google, ten minute timer” I say, and ditching my chefs hat, realising that I have been defeated. There is only one option. To leave the virtual assistant to take the reins.

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Autism Strategy, Toilet Training

Top Tips For Toilet Training when your Child is Autistic

Getting your child toilet trained is one of the hardest tasks for any parent, but when your child is autisitc and non-verbal, it provides even greater challenges.

But it can be done, you just need to gather a lot of patience, a support network and realise you are in it for the long haul.

Here are my top tips for toilet training when there is an autistic twist:

  1. Follow the advice and steps from any toilet training search on Google. The general guidance is still the right way to tackle this. This includes reward charts, regular visits to the toilet, positivity and encouragement. Steps 2 to 20 below are the enhancements to the standard process.
  2. Skip the potty and go straight to the toilet. You don’t want your child to finally grasp toilet training and you then have another challenge of ditching the potty. Limiting the number of transitions is key.
  3. Get a toilet seat for comfort and a little step to support your child’s legs and to allow them to get up to the toilet.
  4. Keep to simple language. Use the single word “Toilet” to state what is going to happen. If your child is non-verbal, use the word with the associated Makaton or photo image.
  5. My son would not sit on the toilet. All the guidance on putting them on the toilet morning and night, and getting him use to it etc. didn’t work. His nappy was all he knew and it was working for him, so why change that? We just jumped right in on day 1. It avoided confusion of when to go and although a big change, helped communicate that this was how it was going to be going forward.
  6. Become cleaning experts. Accept that your child is going to have loads of accidents, and this can be for a number of weeks before you even get one sucess in the toilet.
  7. Let your child do whatever they want if they sit on the toilet. Let them watch the iPad while eating a ice-lolly and holding their favourite toy. Remember the main objective, everything else can go out the window.
  8. Get a support network, you can’t do this alone. This includes family, friends, nusery/school and any other professionals. You all need to be following the same plan and sharing what has happened that day to ensure you are working together.
  9. Forget hand washing (I can’t believe I typed that!). But seriously… focus on getting the wees and poos in the toilet. The tasks about pulling their pants up, wiping their own bum, flushing the toilet and washing their hands can come afterwards. Wipe your child’s hands quickly with a wet wipe afterwards and you can also add some antibacterial gel if you want.
  10. Dont force anything. You may want to forcefully put your child on the toilet and shout “PEE!!!!” at them. I’ve been there. After a week or two of battling and struggling, you may find yourself doing this. But don’t. It will set you back weeks. Take a breath and get someone else to step in if you can. Otherwise just walk away and come back calmer.
  11. Run the tap to tempt your child to wee, and make sure you get them to drink loads of liquid.
  12. Get them to blow bubbles when on the toilet – helps with the poos!
  13. Don’t worry about night time. Pull-ups go back on at bedtime, and then pants back on in the morning. Bedtime training will come later.
  14. Give a reward for any small step or just encouragement. We used chocolate buttons. One button before the request (so he knew what he was going to get – he had the taste in his mind) and a second as a reward.
  15. Don’t feel you can’t go out. Get your child to sit on a towel in the car and take loads of changes of clothes, wet wipes and cleaning products. Stick to outdoor areas and make sure you have a pack of anti-bacterial wipes and kitchen towel in your bag – to clean the slide or other equipment in the event of an oops moment.
  16. Once you have your child going to the toilet start thinking about the other steps and add them on slowly, one at a time.
  17. Print out a picture sequence of what is required, and point to the stage you are doing.
  18. The whole process is going to take a long time. Break it up into small tasks. It will all be worth it.
  19. Be creative and use your initiative. I have heard people planting wee trees for their sons to encourage weeing standing up. Use your child’s interests and remember the main objective – getting wees and poos in the toilet.
  20. Don’t give up.
An example picture sequence to use when adding on the additional steps

Has this helped you? Can it help someone else?
Share with your friends or support groups.

Head to Facebook and leave a comment.

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Autism Strategy

Bikes Are Not Just For Riding!

Rhys sat on the floor, his balance bike in front of him, on its side, the wheels spinning.

I looked at the bike, with an image in my mind, of him sitting on the seat, his legs pushing off the ground as he glided down the small path at the top of our road. An image I had seen of other children his age, while out with their family. High pitch screams of excitement as they felt the warm air glide through their hair.

Rhys however continued to sit and spin.

I knew he was happy, to him moving wheels was just the best thing ever. But somewhere in my heart, I wanted him to enjoy the movement of the bike and the feeling of freedom, it taking him on an adventure.

I consulted Google for advice, and there were a few printouts about riding a bike. They were structured into a number of pictures which sequentially formed a story, with a beginning, middle and end. The social story around the activity seemed like a good idea, so I printed it out and arranged it ready to show Rhys.

Bending down to his level, I held up a picture of a little boy. He was wearing his helmet, with the words ‘ride my bike’ stencilled in bold above the image. “Rhys, ride bike?” I asked.

Rhys’ eyes remained transfixed on the movement of the wheels, ensuring their continuous motion with a swift flick of his hand every time they started to slow down.

He did not acknowledge my picture.

I held up the second picture in the sequence. The boy was now climbing onto the bike, the words ‘sit on seat’ stencilled once again in bold above the image. “Rhys sit on bike?” I asked, taking the bike in my hands and lifting it up onto its wheels.

My social story suddenly took a different turn. Rhys got angry! His wheels had stopped moving. His fun had ended with no explanation except for some crazy woman holding up pieces of unrelated paper! He pulled the balance bike towards him, letting it fall back onto the floor. Lifting his hand he spun the wheel once again, and watched it move.

No fancy social story printed off the Internet was going to work. I realise that I would need to accept that objects didn’t necessarily need to be used in he way they were advertised.

Later that day we sat watching Peppa Pig. She was on the way to the dentist, every step of her journey described in her own little bossy way. The journey in the car, the waiting room, the dentist’s chair – it was all methodically described, with a happy ‘jump in muddy puddles’ ending.

I had an idea.

I grabbed my phone and searched. It didn’t take long, but I found a Peppa Pig episode where the family went on a bike ride. They had a race, they had fun while seated on their bikes.

I put the episode on the telly and we watched it on repeat. Then I searched YouTube and found a video of a little boy on his balance bike. I played the clip in the background as Rhys spun the wheels on his bike. After a while, I saw his eyes notice the screen, and then start to watch the movement of the bike as the boy rode up and down the road.

Picking up the bike, I placed it in front of Rhys, and he reluctantly sat on the seat as I pushed him over the carpets and around the house.

He rode his bike just like Peppa, just like the little boy on YouTube.

A social story does not need to be a paper sequence of pictures. It can be anything to describe and explain an activity or social norm.  Being in the technology age, I used the device at the end of my finger tips. A hub of resources just waiting for a search term.

We still have a long way to go on the bike. But we will take one step at a time. Thanks to Peppa, she got us one step forward.

🚲🚲🚲🚲🚲🚲🚲🚲🚲

Read about social stories and how to use them here.

Let me know your thoughts. Go to Facebook and comment if you have tried any strategies.  Share so others can try them too.

Autism Strategy

Strategic Choices

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.

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