Tag Archives: autism awareness

Sock It Up!

It was early January and Rhys was due to start school after the summer. At the age of three and a half we had overcome so many challenges, but hundreds more lay ahead. I wanted to keep smashing down the barriers and not let his autism be a blocker to his achievements. Things were harder. Goals took longer to achieve. Additional support was needed. But together we could work out a way to succeed. 

I opened his drawer and gathered up his clothes, with a goal in my mind that I was keen to work on and see him accomplish. I wanted him to be able to get dressed by himself, a simple but hugely challenging task for my little boy.

I looked at the socks in my hand and thought about how I pulled my slightly larger versions onto my feet daily without thinking. A task that had become a habit, but had probably taken me a lot of practice from a very young age. 

Walking back to my room, I took a pair of my own socks from the drawer. Sitting on the end of the bed, I purposely concentrated on my actions, as I slipped my naked foot into the fluffy material. Gather up the sock, place over my toes, pull over my foot, around the heel, and then pull up over my ankle. A simple task for me, but a five step process which my son would need to master.

I gathered up Rhys’ clothes which I had collected from his room and started to lay them out on my bedroom floor. They formed a sequence, a visual schedule of clothes, with the pair of socks placed at the very end.I then grabbed my phone and took a picture of the setup and put it into my First-Then app followed by a reward of some bubbles.

“Rhys, get dressed, then bubbles” I said.

I sat Rhys down in front of the clothes sequence, and from left to right, I got Rhys  dressed, with no expectation or request for him to do any of the actions himself. It was not about Rhys trying to put on any of the items, that was my job. The plan was for Rhys to complete the final step, and we would move backwards from there. I moved along the clothes sequence dressing Rhys, first his pants, then his trousers, and finally his T-Shirt, we finally approached the socks. I moved behind him and thought through the task breakdown I had identified earlier. I gathered up the sock, placed his foot into the opening, then pulled it up his foot and over his ankle. Coming to the final step of the task sequence I took hold of Rhys’ hands to help him do this part himself. Placing his thumbs between the sock and the skin of his ankle, I hand-over-hand, helped him pull the sock up his leg.

“Well done Rhys” I cheered, and hugged him with delight. He had accomplished the first (or last) step of the task. Following my promise, I filled the room with bubbles.

Over the next month, Rhys mastered the goal of pulling the sock up his leg all by himself, and we moved onto getting it pulled over his heel and then continuing backwards through the routine, to him placing his foot in the gap, finally gathering up the sock in his hand. Socks proved to be one of the most challenging goals, but step by step we got there, and Rhys managed to put on his own socks after a few months of hard dedication. 

Every morning and every night when Rhys got ready for bed, I continued to lay out his clothes and pajamas in the same order to get dressed. As soon as he had mastered his socks, we continued to set goals from the end of the clothes sequence, breaking down each piece of clothing into simple steps.

It took a year in total, to get Rhys independently dressing himself, and now three years later Rhys still has his clothes laid out in the same order for him to get dressed.

Break down the goal. 

Persevere. 

Never give up. 

It took Rhys a year, I would have kept going even if it had taken two! 

***

Click here to get a step by step guide on using Backward Chaining.

*The content which I have shared is all a result of my own experience. I am not a qualified speech therapist or OT, I am just a parent who wants to share what has worked for us, and hopefully help others with my knowledge and experience.

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The Car, The Stick and The Tennis Ball

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.

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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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The Club of 3am!

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

  1. You begin to ponder whether 3am is actually the middle of the night or just very early morning!
  2. 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!
  3. 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!
  4. 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!
  5. It does not give you more time to do things! Efficiency and tiredness are not multiply exclusive.
  6. Five coffees before 7am has no impact in preparing you for the day, just makes you pee ten times more before breakfast.
  7. You eat breakfast at 5am which means lunch is moved forward to 10am.
  8. You eat more due to running out of mealtimes with dinner shifted to the earlier slot of 2pm!
  9. 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!
  10. 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!
  11. Everywhere looks suitable for a nap!
  12. 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!
  13. 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.
  14. You lack the ability to talk and find yourself making up new words, like ‘decisioning’, and believing they exist.
  15. 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!
  16. 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!
  17. 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!
  18. Takeaway for dinner on a 3am day is unquestioned.
  19. You only manage half the takeaway because eating takes effort you just don’t have.
  20. 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.

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The Silent Mattress

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.

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