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.
I sat on my lounge carpet, a lady from Portage kneeling down next to me.
“We need to work on engagement and reward” she said, as my son sat a few feet away, unaware of our existence. He had a big dumper truck on the carpet in front of him, it was turned upside down with the wheels upright, spinning in motion. As the wheels slowed down, he flicked them with his hand and set them back in rotation, then moving his arms into the air, he began flapping in excitement.
“We need to get Rhys to want something we have, that he cannot take away and has to engage with us for more” the lady said.
She leaned into her bag and brought out a small red plastic bottle. Unclasping the lid, she drew out the little plastic stick and announced, “Ready, steady, go” then bringing it to her lips she blew. Bubbles filled the room, and she edged closer to Rhys and blew them all over him, letting them fall down around him, popping as they made contact with the spinning wheels of the truck.
Rhys noticed them but choose to ignore their presence, still fixated with his toy.
As all the bubbles disintegrated, the stick was re-dipped into its contents, and bringing it to her lips, the lady again announced “Ready, steady” but then paused. I looked at her as she sat still. She had also shifted herself to be in Rhys’ line of sight.
“Go” she suddenly shouted and filled the room once again with bubbles.
I looked at her, “Why did you pause?” I asked. “Watch Rhys next time” she said, and I did.
As the bubbles disintegrated once again, I looked at my son. To me he had not moved, still spinning the wheels of the vehicle, totally unaware of our exsistence.
The plastic stick was re-dipped for the third time, and brought to the lady’s lips. “Watch Rhys” she whispered. “Ready, steady” she announced once again, then waited. As silence flooded the room, I watched my son.
Nothing happened.
Then his eyes flicked in her direction. It was so quick that if I had not been looking, I would have missed it.
“Go” she shouted and filled the room once again. Rhys continued to spin his truck wheels.
From that day I blew bubbles all day long, waiting each time to get that split second flicker of eye contact. Eye contact that increased over time, until a few months later he was jumping around the room, popping each bubble and looking to me for more.
Over the years we kept using the Ready, Steady, Go strategy to develop his engagement and eventually his speech.
At the age of three I sat with the bubbles in my hand and with Rhys’ eyes meeting mine I said, “Ready, Steady” then I paused. I waited for what felt like an eternity. His eyes were locked with mine, but I wanted more, I wanted a sound. Not a word or anything with meaning, just any sound.
Then it came. A vocalisation.
I blew so many bubbles they filled the room for a full five minutes.
From then onwards the options were limitless. We would throw Rhys up in the air after his eye contact and shouts for “more”. Cars flew down ramps, but only after he had engaged and we ran across fields on the shouting of “Go”.
The vocalisation started to mould into the word Go, meaning I no longer had to wait for eye contact because he initiated it himself. Over the years he now chants the three words along with me, but they mean more than just engagement. They identify the commencement of something, the start of an action, a trigger for an activity together.
Sometimes the simplest of methods can reap the greatest of rewards.
Three small words changed our lives.
Three words that pulled my son out of his world and into ours.
Just three words and a bottle of bubbles.
Click hereto get a step by step process to follow.
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.
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.
The chair is hard and uncomfortable, as I shift back and forward, crossing and uncrossing my legs in nervousness. There is a sickness in my stomach as I sit and listen to the comments being spoken to me from the other side of the table.
“A quiet environment will suit him better”
“He is not at the level expected for his age”
“We are not going to be able to meet his needs going into the future”
“We are not equipped to meet his requirements”
I sit silent, letting each word hit me, like small pellets being thrown at me, striking one by one. I don’t respond.
Every day that we had collected my son from school I had been met with positivity, and updates on how well he was settling in. His home book had details of tasks he has completed alongside paintings he had constructed. He had settled in.
I sat in shock at being thrown a curve ball, a switch from daily positive updates to an annual review where every update defined my son as not meeting the grade and in a school that could not accommodate him. There is nothing more hurtful than getting told that your child doesn’t belong and every comment cementing the fact that he is different.
An assessment had been done and the results were pushed across the table to us. I read the scale which defined the developmental age range, and then looked at the assessment for my son. It was separated into categories of social interaction, literacy, physical development, and mathematics. Every category placed him below his peers, which was not a surprise, but what struck me was that he had been assigned a developmental age of a year to eighteen months in many of the categories. Rhys was four years old.
The school couldn’t meet his needs!
I disagreed with the method of assessment, I believed that giving a minimal score for literacy, because he couldn’t read aloud was unacceptable, and that marking him down physically because he couldn’t jump when requested verbally, disadvantaged him due to the inability of him to understand perceptive language.
But I still sat silent.
I sat silent because I was using every ounce of strength to hold back the tears. I was not prepared for the bombshell they had just delivered with no positive comments of how amazing my son was and the progress he had made over the year. I had no response prepared, because I had been hit with something unexpected.
We left that day, and I cried. I ran through so many things in my head of what I should have said, about what I should have asked. But in the shock, I had just sat there and let the words hit me like rocks. The school was not right for my son, they couldn’t accommodate him, we should look at a different setting!
But although at the time I had started to construct a delayed list of words and comments I wanted to return, I am grateful for what they did. They forced us to make a decision that has changed the path for my son. His autism makes him different, it means things are approached differently, and they were right, that school was not the right fit.
We visited many schools and gathered feedback from different parents on their decisions and experience. I seeked professional guidance but received no help, just the response, “You know your son best” – but I didn’t! I knew nothing about what my son needed. I had no experience in the school system or the world of autism. It was a world I had experienced for less than a year. The truth, I believe, was that if the professionals did provide guidance a large percentage of children would be referred for specialist care, but the system just cannot accommodate it.
Within six months of that school meeting, Rhys moved to a new school. I fought every barrier and even found direct contacts within the education system to ensure he got the support he needed. Rhys joined a special needs base at the beginning of his second school year. They specialised in autism, with the additional advantage of still being within a mainstream school. He would have the professionals on site, moving at his pace and teaching him with methods suited to his development.
It was an emotional time where our expectations and future vision had been shattered. The pain of rejection towards your child is heart breaking and knocks you backwards, it hits a spot you don’t even knew exists. At the time I couldn’t make a decision with my heart, so did it with my head, detailing the factual reasons why a school move was the right thing to do.
Rhys changed schools eighteen months ago.
Last night my phone rang. Rhys’ teacher spoke on the other end of the line, she spoke positively about every aspect of Rhys and his development at school. His excitement when he arrives and all the end of year activities which are being planned. But the unexpected update was around his engagement. She spoke about how he interacts with the other children and the friendships he has formed. Coming from a school where he sat on the side-lines, trailing behind the level of his peers, and unintegrated in the classroom, to be told your child, with social challenges, has friends, is something I have no words to describe. He is part of a group, he is part of the class, he even has a best friend.
The right decision
The decision I made with my head over eighteen months ago was the right one, and I am grateful for that annual review that left me in tears. They did the right thing, because moving Rhys was the right thing to do for him, even if I found it difficult to accept at the time. And if it had not been the right decision, it was something we could have looked at again and changed.
Because a decision is for that moment with the information you have at that time. If over time those details change, you can always reassess and take a different path. But you will not know unless you take that leap and try.
Head to my Facebook page and share your thoughts. What education solution has met your child’s needs? What was your experience? Are you struggling to make a decision?
An Autism Blog creating awareness one story at a time
