It is tough having your own development and progress analysed and dissected.
It is a hell of a lot harder when it is about your child.
I have been to many annual development reviews for my son. Some I walked into happy and confident, but left in tears, with a sick feeling in my gut and emotions that took months to heal from.
However, the last few years I have left feeling empowered and motivated to strive forwards to new targets and goals.
Annual reviews, for special needs children, vary extremely and unfortunately it is down to the people who support your child, their ability to communicate, support and collaborate together towards a common goal.
For Rhys we are always honest. We sit down as parents before every review and we discuss the truth – nothing sugar coated or missed, everything factual. We discuss what we want Rhys to work on, where we are not seeing progress and where we need help as parents.
Then we send the black and white text to the school, our submission for review.
Reviews are tough, they highlight the struggles, they are the formal way of showing how far your child is behind their peers. But they also shine a light on the achievements and goals they have met over the year, and whatever we need to do to get more of those moments, is what we strive for.
Every review we focus on Rhys and what he needs, or how we can work with the school to smash new targets.
We are lucky.
We have a great school setting and support for him, where school and home can blend into one. Where his teachers know all about his family and out of school activities, and we can work with the school to jointly focus on the same elements.
But it has not always been that way. I have left previous reviews and meetings feeling the need to throw up in the playschool gutter like a cheap drunk who can’t handle their emotional booze!
It took time and setbacks to find the right setting for Rhys. The support we get now was not handed to us on plate, it was fought for and as a result of set backs and tough emotions, we found our way.
The annual review is there for parents, teachers and professionals to ensure the best for their child and their needs. If your child is not central to those discussions or you as the parent are not getting what you feel is in the best interests of your child, you are part of that review and have a equal say in changing that.
Make sure you fight for your child. Prepare yourself for the review. Focus on your child’s needs and how you can all work together to achieve it.
‘Make salt dough decorations. Paint them and share a photo’
That was the home-schooling work for today!
I was full on dedicated to the task. I don’t think Rhys was as enthusiastic!
I measure out the ingredients – salt, flour and water. Placing them in separate containers ready for my little learner to pour them into the bowl.
Then I pause.
The whole setup looks very like cake baking. What do I call it when I ask Rhys? I can’t lie and say cakes, nothing like adding confusion to a situation.
I decide to be honest.
“Rhys, let’s make dough decorations” I say holding up the wooden spoon as a prop.
He happily walks with me to the kitchen. I have been clever (not an amateur at engaging with Rhys) and have ignored the Christmas decoration cutters, opting for numbers.
Numbers win every time.
“Rhys, pour flour” I say, helping him with the bowl. He pours it into the mixing bowl and lifts the wooden spoon to stir. “Now salt” I add, handing him the second bowel. He adds it to the mixture adding his own commentary, “Stir, stir, stir!”
I pour the water in and hope for a bit of sensory engagement, with finger kneading the dough. But as I mix Rhys immediately jumps down from the step.
“Rhys, come stir” I reiterate. “Eggs!” He shouts back, pointing to the egg basket. “No eggs. Dough Rhys” “Eggs!”
I then look to the dough and back to my son’s face.
“No eggs, Rhys” I say once again. He looks back at me, turns around and leaves.
I kneed the dough and start to cut out some numbers. Then I pause.
My son has buggered off, why am I doing his homework?
The then realise that I never actually turned on the oven. I must have somewhere deep down known the outcome of this.
I gather up the mixture and toss it in the food waste bin.
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?
Tomorrow when you drop your child off at school, dressed in their something spotty for BBC Children in Need, there may be a child in line, in their school uniform. Naturally we think about the parents. How they have forgotten or sadly, in some cases, just do not care.
I hold my hand up as being one of those parents. Hopefully not the one who doesn’t care, but the one who has forgotten. I will even give myself credit for getting my children suited and booted, to find out it is actually an inset day, and just a month ago I sent my daughter to nursery dressed head to toe in a Halloween outfit – one week early for the celebrations.
And the forgetfulness does not just stop with me…
Last week, my eldest said to his father, as they were leaving for school, “I haven’t had any breakfast!” to which my husband responded, “I haven’t forgotten, we are going to eat and walk!” then grabbed a hot cross bun and some crackers while trying to hide his feeling of embaressment.
I’ll be honest, I haven’t even made a dent in my confessions. From the quantity of emails with instructions of cub badge completion, to spelling tests and odd sock days, I frankly don’t know how we manage to pull it off. As parents we must be assumed to have nothing else to do but coordinate kids activities and school requirements.
I would like to personally thank Amazon Prime for its two hour delivery service, as it is a large contributer to our family sucessfully meeting the needs of school email criteria!
Also on top of all this, I have a job and a life too. Not that I am any more organised in those!
But the point is that sometimes it looks like I have messed up, but actually I have also done some things in a certain way on purpose. I sent my son to school in his uniform on dress down day. It was not because I had forgotten, I knew perfectly well it was happening, but I ignored it! Also I didn’t do it because I was lazy or didn’t care for my son’s needs. I actually did it because I was in tune with my son’s needs.
Rhys is autistic, which means many things, but fundamentally means he likes structure. We also have to communicate in different ways to the standard family down the road, because verbal language is difficult for him.
School uniform means school, so wearing his trousers and polo shirt means that he knows it is a school day and not a weekend. It triggers the mental note of what is going to happen that day. It avoids confusion, a meltdown and any anxiety that is introduced through even a small change (such as different clothes).
But here is the point.
Rhys doesn’t care being in school in his uniform, while his peers are all dressed differently. But I think one day he will care. Also children ask questions, so when he stood out in his uniform, I felt he stood out even more than usual. A situation I wanted to tackle and find a way around. Which I did, and have done so for the past year.
So to all those parents in the same situation, dreading tomorrow’s dress down for Children in Need, give this a try.
Tomorrow, I will dress Rhys in his dress down clothes – his new spotty t-shirt! Then I will put his school t-shirt over the top of his clothes – I have his brother in on the act, who will do the same. This forms a visual representation of the day for Rhys, that it is a school day, and the mental association of a school day routine.
After breakfast, as we get our coats on, I will take Rhys’ school t-shirt off (so will his brother) in a quick t-shirt / coat switch over technique, and we will then leave the house. The mornings activities and structure will follow in the normality of a school day.
Tricking the System!
This method has worked wonders for us, and the best part is that Rhys will be just like all the other children arriving at school, in his dress down!
Let me know if you try it tomorrow. Let me know if it works.
“Rhys, hand” I ask as we walk out the house, my hand held out for him to take hold of. He continues to walk forward ignoring my outstretched grasp. I grab the sleeve of his coat as he darts past me. His hands are hidden in the sleeves and I try to pull one out, but he resists and contracts his fingers into a fist.
Our routine is planned and executed in the same way each day. We leave on the hour giving ourselves sufficient time to walk around the corner and down the road to pick up my eldest from school. The two roads are busy with cars and buses on the school commute and I have held Rhys’ hand every day, on route, to ensure his safety.
“Rhys, hand” I request firmly but he will only let me cling to his coat sleeve, refusing the restriction. I pause and think for a minute.
I am one of those over cautious parents. As I look up and see a pair of four year olds running freely ahead of their parents, my stress levels starts to rise. I consider the risks on those kids, the sence of danger and the consequences that could result. Those parents aren’t worried. But their situation is different to mine. Those parents don’t have the sprinkle of autism involved like in our scenario.
But we do have some things.
Over the years we have worked on the word “Stop” which Rhys responds to. I have also worked on routine and we have walked this route to school tens of times. The same pavement trodden and the same noises, sounds and smells experienced. The scenario has been tried and tested and therefore there is an opportunity to push the boundaries and check our progress.
“Let’s go, Rhys” I say and start to walk forward. He walks next to me, but seeing his new sense of freedom he suddenly bolts forward and runs at full speed down the pavement. “Rhys, stop!” I shout. It takes a few seconds to process, but he stops and waits for me.
Running ahead !
We continue in the same vain all the way down the busy road. Rhys watches the massive bus wheels and runs ahead, but always stopping on my command. Not once do I hold his hand, and although I am on constant alert and a high sense of unease, he is following my command and walking independently.
We have moved from a situation of not being able to leave the house to a situation of walking unrestrained! That is massive for us! That makes us feel more part of this world that everyone else lives in! The world further away from the stresses we once experienced.
The feeling of walking casually on a school run while my son runs ahead is a place I never imagined. But here we are, totally rocking it.
If you are not there yet, don’t give up. Things take time. They take years. Just take one step at a time. And you will get there!
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