I remember sitting in a horseshoe of chairs at our first National Autistic Society Early Bird course. It was the introductory session and we were going around the room giving an insight into each of our children.
Questions were asked to each couple in turn, with each question starting with someone different each time to allow us all to share.
“What is sleep like?” said the lady to my husband. He was first in the small group to answer the question.
“It’s hard” he said, “Rhys goes to sleep happily in the evenings at 7pm, but is then up really early around 04:30am”. We are constantly tired.
The question was then posed to the next couple who shared their struggles with sleep. How their son didn’t fall asleep until ten or eleven o’clock at night, and would then be up at about two am.
The answers from the group continued with responses including the need to lie down with their children for hours till they finally fell asleep, only to be up after a few hours.
As the responses were shared, me and my husband looked at each other from the corners of our eyes. Our sleep difficulties seamed miniscule to these other parents. We were always guaranteed an evening of peace, even though it was often an exhausted one due to being awake since four or four-thirty.
My husband held his head in his hands, embarrassed at his honesty of our son’s challenging sleep pattern. Wishing he could wind back the clock and not be the first to have answered that question.
We laugh about it now. We laugh because even though we are lucky with sleep (in the autism world) every couple of weeks Rhys does start the day at 2am. On those days we just trudge on and go to bed early.
I do however have a little laugh to myself when I overhear other parents sharing their early morning wakeups of six-thirty or having to wake their kids up who are still asleep at eight-thirty.
The thing is, you can take a child to their bed, but you can’t make them sleep (unless you have some magic melatonin!). I have however learnt over the years to just go with it. When Rhys wakes up he is ready to start the day. One day that may be five, other days it will be two in the morning!
Some days I snooze through the demand for the Gruffalo. Other days I get up and use the time to my advantage, because clocking up a few hours house work or a few chapters of my book puts me on the front foot for the day.
If I mope around in a half awake mess for the rest of the day, I don’t feel like the day has been totally wasted. I will have done my bit.
The pain and illness that has consumed our house for the last forty-eight hours has passed. After a good night’s sleep, I stretch my arms upwards and breathe in the new day.
I pick up my phone and focus on a new goal. At Rhys’ annual review a few days ago, we discussed the use of Makaton and how visual signs are a good method of aiding verbal understanding. Rhys is a visual learner, so I was keen to get started on a way to enhance our communication and develop his understanding.
‘Good Morning’, seamed like a good start to my Makaton journey. I type it into Google and watch a lady demonstrate the sign. It is a simple thumbs up and swoop across the shoulders. “I’ve got this” I say to myself, holding up my thumb and swooping my hand from one shoulder to another, in confirmation of knowing the sign.
I know that Rhys is one step ahead of me in learning Makaton, after his experience of it in school. So I have a positive feeling that this is going to be a good move forward for us.
I can hear the chatter of Rhys next door as he occupies himself with his numbers. He must have been up for about an hour, but is happily entertained, and for once has not pounced on top of me in the commencement of a game of hide and seek.
Walking into his room, I crouch down in front of him. Previous multiple attempts of prompting for a “Good morning” have been semi successful, but never clear or freely spoken. So I am excited to see how this works out.
Looking into Rhys eyes, I get his attention. “Good Morning” I say, holding my thumb up and passing my hand across my chest, in sync with the two words as I speak them.
“Good Morning” replies Rhys in words more clearly than I have ever heard him say. It is spontaneous, with no prompting. A response I would have received from one of my friends hearing my greeting.
What a great start to the morning. It is definitely going to be a good one. I immediately run back to my bedroom and shake awake my husband. I explain the makaton and Rhys’ response.
“What’s the action” he asks. I show him the sign, and he mimicks me, confirming it back to himself.
Kneeling down by Rhys, he looks at him and holding up his thumb says, “Good Morning,” followed with the swoop across his chest.
“Good Morning” says Rhys.
It could have been coincidence, or maybe the Makaton had helped, prompting the clear communication. It doesn’t matter. Rhys communicated back to us without prompting.
I am excited for this new goal. An additional way of building communication with my son.
For anyone wanting to come on the Makaton journey with us, I want to introduce “Makaton with Jessie”. Rhys’ little sister who is joining in with the plan. Because as Jessie puts it, “We are a team!”
I think she is doing a pretty good job. What do you think?
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.
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?
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