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.
I remember sitting around a table, a range of individuals at each space holding different professions and reasons for being there. The school headmistress, the deputy head, the speech and language therapist, my son’s class teacher, his 1-2-1 and then me and my husband, his parents, all waiting to discuss my son.
We were in a school meeting about my son, waiting to discuss his development and his future targets.
Rhys was in a mainstream school, with full support via an amazing teaching assistant who helped him move forward in engagement, and speech. The arrangement was meeting my needs, and my expectations for my son of attending the school across the road, and progressing through with the additional support he needed for his education.
Everyday when I picked him up he would come out to me, his home book in his bag detailing his achievements for the day. The statements in the book were all I had to go by, my son couldn’t talk or answer the standard question of, “How was your day?” I knew nothing of his activities except for the few sentences in black and white, and a brief conversation at the school entrance.
And now I sat in a meeting. A formal arrangement to talk about my little boy. My little boy who had only just turned four, a few months earlier.
And then the words came.
“We don’t think this is the right place for Rhys”
It hit us hard. It was like someone had taken all our plans and expectations for my son, and within the few seconds in which those words being delivered, they had smashed our view of his future into a thousand pieces, leaving us with nothing.
As the words were said, I had no response. I couldn’t talk. Others may have immediately retaliated, argued “What do you mean, what are you talking about?” or asked questions of what the right setting was.
But I just sat there trying to process the words. Like a machine in slow motion, dissecting each word and working out what it meant through a state of shock.
As the rest of the meeting progressed, I sat numb. All the words which were said just brushed over me, not absorbing into my mind. I had no response to the statements, because I felt empty, like everything I had every planned, and decided and envisioned, had been wiped out in one single swipe!
It was like taking the bullet which had been fired, and not reacting, just feeling the burn.
I walked out of that meeting in a haze, as if I wasn’t present in the situation, because I had nothing to grasp hold of, I was left to rebuild something from nothing.
After I had cried for hours, I phoned the autism outreach programme who were responsible for my son’s support, and asked them the question I had managed to form in my mind, “What school is right for my son?”
If his current school was not the right setting, I wanted to know what the right setting was, and that was a question I had for the professionals, the ones who knew about Autism and the methods to bring the best out in my child. These people had been supporting my son and had constructed reports, assessments on him and even knew him as a person, having worked with him directly.
As I stood with the phone to my ear, I heard the words which did not answer my question, just a political sidetrack of the guidance I needed, “You know your child best, and the education he needs” came the response.
If I had thought my plans had been shattered before, those words just fired a second bullet. I had asked the professionals for help, but just had the challenge passed back to me. Passed back to a person, who had only really started to understand what autism was, less than twelve months ago. And now I was expected to know the answer to a question on his education, a decision that fundamentally was key to his future!
The truth was not only that I had no knowledge or idea of what education was right for my son, but more importantly, I didn’t know my son, and I didn’t know how to address his challenges or difficulties.
People spent years studying psychology, speech therapy, occupational therapy and researching the best methods of engaging and teaching those with autism. But no one would tell me the best for my child, or what would be best for him?
I accepted that the decision would always be on our shoulders, but a decision can not be made without information, and that information was not forth coming.
So I researched, and we visited different schools and settings. We gathered all the information we could find.
But I still struggled to make a decision.
It takes a long time to change expectations, they do not change over night. So I did the only thing I could. I made a decision on the facts, taking all the emotion out of it. Because there was a lot of emotion, a lot of disappointment and feeling of failure.
We decided on moving our boy. After finding a different mainstream school which had a base unit specific for autistic children, we felt it gave the best of both worlds.
But unlike the normal process of moving schools I then found out I had to fight. We had been told his current setting was not suitable, we had found an alternative, and then we had to fight for it.
The process firstly involved a request into the local education authority for a school move, with explanations of why, and all the supporting evidence.
The case then went to panel.
It went to a group of people who would sit around a table, and view the facts. The black and white words which described our case, without any attendance by ourselves or my son to discuss the need.
But that was not the end.
Once approved at the first panel, it went to a second panel for assessment. All while weeks passed with no communication on the process or what education my son would be provided. After a second panel approval, then I had to have my fingers crossed that there was even space in the school. But thank goodness there was.
We were lucky. Many families are not.
Rhys started at his new school in the September, a whole eight months after the process began. I was still getting to grips with the change, and I still didn’t know if we had made the right decision.
But it had been made.
As the weeks passed and normality of the new school run settled into becoming the norm, I started to see changes in my son. I started to see his happiness and excitement at running off to school, and the independence and being part of a group that the new school provided.
The decision I had made with my head, soon settled as the right decision within my heart.
But this was not the end.
Unlike all the other families who only worry about getting a place in school for their child in reception and then again in high school, we go through the process every year. Annually we sit down with the school, and assess my son’s progress and educational needs. We sit in a formal meeting and a decision is made if he is still in the right setting.
At any point we may be reassessing again. We may be looking to move him. The fight for education, the fight for a vital need that should not be a fight!
Education is a right, something that everyone else takes for granted is made difficult for our children.
Why does my son have to changes his world to adapt to a system that is flawed? Why can’t the system change to accommodate? Why can’t the system be inclusive, and adoptive of all abilities?
π World book Day π A day to celebrate the joy of reading and to encourage our younger generation to explore hidden magical lands, discovering tales of adventure and courage.
Thursday will see some amazing costumes, from the extraordinary ten pound ready-made costume from Amazon, to the parent who has delicately crafted a costume from scratch (hats off to those folk).
Any dress up occasion for Rhys is a challenge. The fussy material, the added weight and inconvenient additions to his clothing. He won’t have it. He is uncomfortable in any abstrusity or difference to his normal comfort, and that’s when I actually manage to get him into something for a few seconds.
These small events, like costumes for World Book Day, are the memories that us parents of children with special needs miss out on. I just want to be like everyone else for once. I don’t want people thinking, “Oh that poor child, their mummy forgot about today” not realising the fuller picture and challenges we face.
But I have found ways to make Rhys part of the day and hope that these tips can mean your children can too.
Accessorise Choose a book/character that is just an everyday boy/girl. Then add the accessory. Charlie Bucket: Normal clothes with bar of chocolate. Dennis the Menace: Jeans with a red and black stripy t-shirt and added slingshot Harry and his Bucket full of Dinosaurs: Normal clothes with a bucket packed with all the dinosaurs you can find.
Top it Up Find a T-shirt with the book character. Amazon is great for this or some supermarkets have the rights to specific books/characters. Last year Rhys was perfectly happy to go in his Gruffalo t-shirt, purchased from Sainsburys. Search Amazon for “T-shirt World Book Day” there are amazing t-shirts for Marvel Characters and many other books, including Diary of a Wimpy Kid.
Customise Rhys will happily wear some items but the fussiness of others are a bit too much. If you have a costume you think will work but the hood gets in the way, or a piece of material is a bit scratchy, carefully cut it off. Use the costume as a starter for 10 and make it your own.
Create Your Own If you are feeling creative and have the time there are so many options with this one. A plain tshirt can be the foundation of many costumes. 101 Dalmatians: white t-shirt painted with black spots. Stickman: brown t-shirt with black lines in the shape of tree indentations. Funny Bones: black top and bottoms with a skeleton painted in white.
Keep Your Hat On Rhys has a love/hate relationship with hats, but it is a great option for a costume. Wearing some plain clothes, add a hat with the book character. The Velveteen Rabbit: buy a brown, bunny hat, and dress in plain brown clothing. Room on a Broom: Witches hat and dress plainly in black and purple. Where’s Wally: white hat with red bobble coupled with red-white t-shirt and jeans.
Onesies are for all Occasions Rhys loves to feel snug and comfortable. Onesies are amazing items of clothing, and with the variety on offer, there are loads of ideas for World Book Day. From animals to famous book characters, or just simple printed onesies with no fuss, only comfort.
It is not just Fiction! Last year my eldest went dressed as a dinosaur with his 101 facts about the Triassic period under his arm. Books are not just the fairy stories we love, they are also the reference books and encyclopaedias we dip into from time to time. If your child already has a favourite outfit or t-shirt/jumper, use that as your reference, then find a book to associate with it. The Wonder of the Solar System (Brian Cox): wear their favourite space t-shirt Seven Worlds One Planet (David Attenborough): Enjoy while wearing their favourite monkey onesie Counting to 10: Wear t-shirt with a number on the back.
Always remember the book and either get them to carry it (good luck with that) or more realistically hold it yourself and wave it around your child in the school playground to demonstrate your efforts. If you donβt have the book, take a visit to the library or do a shout out to friends to ensure you have the ultimate World Book Day item.
The last tip for this day β¦
The change in dress code plays havoc for us in regards to differences in structure and confusion of whether it is a school day or weekend day π€
As Rhys gets ready in his World Book Day costume on Thursday, the last item he will put on is his school t-shirt. It will go over his costume defining the day as a school day. In the past his older brother has been amazing and worn his t-shirt on top of his costume in pride, helping Rhys know what day it is. The visual representation of a school day is on display leaving the normal routine of a school morning to progress. At the last minute, when putting on our coats, we will pull off the school t-shirts, and be ready to go. We will be just like everyone else, because there are times during our challenging lives where we just want to have a moment to fit in and be part of the crowd.
What will you be doing for World Book Day?
An Autism Blog creating awareness one story at a time