I always envied those parents who sat and chatted on the side at soft play centers, parks, or poolsides. They would catch up on social gossip or chill with the other parents, getting a moment to relax and be themselves.
I have never been one of those people. Well, at least since my children could walk!
When your child will leave a venue, just because they are done. Or go to the toilet at the other end of the facility, because they need to go. Never telling you their intent or agenda, I am always left with a feeling in my gut that no words can describe.
That feeling that your child is missing.
When your child doesn’t understand the concept of waiting or personal space, and cannot advocate for their challenges because words are not part of their repertoire, that’s why I am there. That’s why I am at my son’s side, to be his voice, to show him the direction, to make sure he is safe.
His autism brings challenges which I am there to help him overcome.
It means I am always active.
It means I am always involved.
It means I take part in things I may just be a bit old to enjoy, but get the thrill of childhood memories and enjoy my son’s smile at being his partner in crime.
I have crawled through soft play tunnels and got stuck in the clothes wringers when there was no other way to turn without taking my eyes off my teammate. I have sped down water slides, gripping my son with my legs as he sat in front of me on a blow-up tube. His screams of excitement as he shouts, “Hold on tight” and “Weeeeeee” – statements mimicked from me when I was trying to entice excitement and fun.
Then there are activities I have taken part in on my own. The need to understand the process, the feel, and the method, to allow me to construct a strategy to get my son involved next time or years in the future. I have scaled climbing walls and ridden bikes down steep inclines and taken on physical sports like judo, letting fully grown men throw me over their shoulders and end in their hysterics at my ear-piercing screams.
I have had my limits, but they are beyond the standard parent’s limit. I have taken part to let my son be included. Included for now and for the creation of options in the future.
I am not the parent who sits on the bench.
I am not the parent who drinks tea and talks about the latest series release, because to be honest, my television watching mostly consists of Peppa Pig and Numberblocks. I know nothing about the end of Breaking Bad or which housewife has had the biggest crisis!
But I do know that I am doing my best for my son, and to be honest, having a whale of a time doing new stuff myself.
So get up off the bench and live life. Because living brings opportunity, and opportunity creates memories you will treasure forever.
Our children can experience everything they want, sometimes they just need a little bit of support, encouragement and a teammate at their side
She was behind him on the slide, waiting her turn, but still slightly too close for my son’s liking.
She wanted her turn, but my blonde haired boy was taking his time, not considering the queue, but rather just doing his own thing.
She came into his space, and he non-verbally communicated with a little push. Nothing violent. Nothing harmful or malicious. Just a message of how he was feeling. A physical gesture for a boy who can’t communicate in words, like all the other children in the playground.
Once Rhys had descended the metal tunnel, he jumped up and run back for a second go. I watched the girl reach the bottom, she stood up and ran towards her mum, then pointed to the boy in the bright yellow jacket.
I felt a nervousness deep in my gut. Would this lead to a conversation or be brushed off as playground banter? It had happened before, and it was a lottery over what parent would be next in the line up of conversation.
But this time I didn’t wait to find out. Rhys was off to the swings, so I ran to help him out. A get-out-of-jail-free-card that I gladly accepted on this occasion.
I don’t agree in playground violence. If the push had been harmful, I would have been the first one up there to demand my son to say sorry – in his own creative way. But it wasn’t. It was a little nudge, a hint at his uncomfortable feelings of her presence in his space.
This is what I deal with. I don’t sit on the side at playgrounds or play centres. I lurk around the edges watching. I follow my son with my eyes to make sure he is safe. Little kids are safe, and that he is supported where he needs to be.
Maybe one day I can take my eyes off him for a second. Maybe one day I can sit on the side and have a coffee or a catch-up or a chill.
I hear a sound through the darkness. It is quiet at first, then the noise gets a bit louder. I lie still as a rock, not wanting to give away my awake status to the occupant sharing my slumber zone. If I just stay still and pretend I am in some sort of deep sleep – the game of patience, the game of who breaks first.
I am strong, I will not break.
The murmurs continue, and get loader, turning into a situation which confirms a wide awake occupant next door. “Where’s Mummy gone?” come the shouts. A learnt phrase that is muttered in any event of stress.
I am beaten.
The request has come for me, and no matter what I say, my husband will use this request to his advantage. “He called for you” he would say, and when you have prayed for years for any ounce of communication, things like a shout for his mum cannot be ignored,
I literally roll out of bed, my pyjama bottoms having crept up to my knees during my previous hours of sleep, and my vest top is in some sort of disarray.
I ignore my appearance. It is 3am, so my fashion sense has no entry into review, as I walk sleep drunk into the room next door.
I look down at my little blonde boy in his bed. He looks up at me, love in his eyes for the person he has wanted.
I look back at him.
I have two choices, firstly to crawl in beside him, in the lower bunk and take my role in the mutual war to claim some bed space. I might get a few hours of sleep, and I am assured that Rhys will get some too. But the bunk is low, and I have been the co-sleeper in this bed for too many nights, I want to try something new. A deviation from the norm!
I want to try a suggestion that my other two kids request on a nightly basis, to which I give into every now and again. It is something that Rhys has done about twice in his life. Something bizarre to him, because bedtime and sleep is done in his bed. Because that is how it is done.
But I am tired. My bed is big and warm. An investment in a super king which was done for these reasons.
So I test the water. I make the suggestion. I hope for a change to the norm.
“Rhys, come sleep in Mummy and Daddy’s bed?” I ask reluctantly.
I suddenly stand in shock and take a breath. Rhys crawls from his bed, and takes my hand. Teddy’s arm held tightly, determined to join Rhys in his new bedtime adventure.
We walk the long ten steps to my bed, each step I hope that this is going to be the solution, but knowing changes to routine can be catastrophic. We walk onward in the dark, my hope to keep the sleepiness at bay.
As we reach my side of the bed, I lift Rhys into his newly found bedtime space for the night. I then climb beside him, and crawl under the covers, Closing my eyes, I hold my breath in the hope Rhys will settle and sleep.
As I lie in silence, a small arm suddenly wraps itself around my body, and all is calm.
A moment so small, but so big for us. My little boy wanting to climb into our bed, and being able to find it so comforting that he goes back to sleep straight away. Not movement or squabble.
It’s the little things that keep us going. The little middle-of-the-night cuddles. The little changes in routine which happen without planning or even knowing.
This kid is doing things his way, even at 3am in the morning!
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 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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