I wrote this in July 2019 as Alana was preparing to leave Junior School and start Y7. At the time I shared it with those close to me and the school Alana would be moving to. Lots has changed since it was written but I have left it as I wrote it, maybe the journey from September will be another blog.
Never judge a book by its cover
What will you see:
A strong 11 year old
A good communicator
A passion for what is fair
An empathy for anybody that is suffering
An actor
A singer
A dancer
A top grade student
A baker
Everybody is always amazed by Alana and her approach to life as that is what 99% of you will see 100% of the time but that’s not the full story and as her mum I love the days that I see all the positives but many days I see more of the differences that many people don’t see and in many instances don’t believe.
I was already mum to 2 amazing girls when Alana arrived, I thought I had done an ok job as a parent and I was excited to start the journey again, even if I was classed as a geriatric mum!
It was different from the start. A girl who was full of frustration, cried for hours, would rarely let anybody but mum calm her down and didn’t sleep. I did the normal ‘she will grow out of it’
It took until her first day at school for her to sleep through by now I was on autopilot / I regularly got up 20 times a night and then drove to a highly pressured job in Leeds.
Alanas journey with education to date has had amazing highs and some really dark times and I know this could have been very different with small changes and an increased awareness.
She loves to learn and progressed at a ridiculous speed, her loves of books and appetite for knowledge meant she flew through reading schemes and the day she was happy to read to herself was momentous. She continues to have a pile of books next to her bed and when sleep is a challenge she reads for hours often completing a full book. Some nights it will be a book she has already read over 20 times. Encouraging her to read new unknown books can be a challenge – but find a spark of interest and she will read it in a day, love it and enthuse everybody around her – I can already hear the frustrated comments from English and when she has to study a classic text all bets are off.
Weekly maths and spelling tests also started to be a challenge. Full scores every week, I can hear you say that can’t be a challenge. Regular calls to school on the day of tests Alana feels sick. One of us would go down and talk to her and persuade her to stay. I now know it was the early signs of anxiety creeping in. The first time she got one question wrong will go down in family history. Another call to school Alana was really upset. It turns out she had got one spelling wrong and it was the end of the world as Alana knew it. She will never spell carrot wrong again.
We were now in a place that I didn’t understand as a parent. We had open dialogue with the staff, we got some SEN support,started talking to our GP, paid for a physchologist to work with Alana and had an amazing early help worker – we knew we also needed CAMHs little did I know that would present one of the biggest challenges of my life.
We began to notice other patterns and slowly things started to fit. Her mechanisms for managing change were causing us lots of concern. The weeks leading up to Christmas became a massive challenge and as Alana began to slowly articulate how she felt we started to ask for additional help. From our perspective they were simple things but I accept in a busy working day with full classes that might not always be a priority and as the teachers rarely saw the consequences of them not being in place it was sometimes a challenge. Key to Alana was knowing what every day would bring and in what order. To the teachers who wrote a special timetable when they knew things would be different I am forever grateful. It meant that Alana stayed calm and slept. To the many teachers who in Alana’s words got her they have made a massive difference to our family. They have taken hours to talk to her and understand what helps. This doesn’t mean things are always calm far from it. We often have days when just getting her to school is a challenge especially if she knows something is going to be different – a change of staff, a test where she feels she has to get 100%. In more recent times anxiety takes over, her body is tight and everything feels wrong including the scratchiness of school uniform next to her skin. On those days I am grateful to the staff that understand and show incredible patience as we persuade her that the day will be fine. To the small number of teachers who after those events have seen me break down as I didn’t know where to turn to get the help we know is needed you have continued to show my why teaching is a life choice and I wish I could find more ways to thank you.
Not every teacher has got her and some have been dismissive of our concerns – those years been long and painful for all of us.
4 years ago we started a journey to get a diagnosis for Alana – her records already showed treat as ASD thanks to one of the fantastic teachers who Alana has been lucky enough to have. We never wanted Alana to have a label as she is Alana what other label is required but Alana was getting frustrated and wanted to know why and in the back of our minds was the shear fear of a move to an enormous school where it wasn’t sufficient to build a relationship with one teacher so they could get Alana.
The journey continues still no official diagnosis but we are close to an assessment and we are hopeful of some anxiety therapy.
The move to high school is now on the horizon and we are all excited. Alana was asked if she wanted to consider other schools the answer was always no, I came here, her sisters came here, one sister works here and the other is a regular visitor and I am a governor. It is in our blood and Alana’s visits from being small means she knows the school and many of the staff, why wouldn’t she come here.
I love the school and I am in a privileged position to know how many amazing things happen in these grounds but I am still scared. Alana will go from one teacher and one classroom to multiple teachers and multiple classrooms. Communicating change before it happens won’t be easy but if she walks into a class that has a teacher she doesn’t expect you probably won’t suspect anything but her emotions will build during the day. If you are lucky you won’t know anything but I will know as I hear the handle turn when she gets home – the tension will be clear, she might control it herself by signing or playing the piano or she might have a full blow meltdown and end the day exhausted and unable to sleep – far from ideal for so many reasons and imagine teaching her the following day.
Her attitude to right and wrong is to be applauded but she even picks up the little things and will spot the slightest indication of bullying from a hundred yards. She can’t ignore it her black and white thinking says it’s wrong and it has to be sorted so she will want to tell people – that doesn’t win her friends and I know she can be seen as a tell tale but she will debate with you for hours why something is wrong. She has 2 close friends who calm her down in these situations, I hope they will continue to be close to her at Wales at least until she makes new friends that understand her.
She has a love of learning if you embrace that her potential is amazing. Her love for science and Maths is clear to all. some subjects will be a challenge, she wants to enjoy art but feels she is rubbish so panics as soon as art is mentioned. In her current class they spot it and the TA is there keeping her calm. I know that isn’t practical in a school of such scale unless I start another battle for an EHCP. I am not sure I have the energy for another battle in me yet but I know I probably have to at some point.
She loves history but hates to write, something else she feels rubbish at but ask her to talk about the suffragette movement and she will tell the whole class with an unbelievable passion.
Use of language is another challenge – she takes everything literally so if she hears don’t be daft she is daft if she hears that’s pathetic she is pathetic.
You will see a cover that will impress inside is a girl who has no confidence, struggles with many things and in the darkest of days doesn’t think she deserves to be here.
I believe in the school and I know she will get the help we need, there will be difficult days, some of you may see tears or anger but I hope as awareness of autism grows especially in girls who for many years have been forgotten because of their amazing ability to mask things will get easier.
A few things will be key to Alana
Someone she trusts that she can open up to – in my dream scenario that is her tutor teacher so they see her every day.
The confidence to join groups that do do the things that relax her – in my dreams she can go and sing somewhere at any time she feels overwhelmed or golden dream – a piano like you see in train stations that she can play whenever
Clear communication including when things change – I know in a big school this presents challenges
Appearing on the school stage – in her words she won’t be Alana then – she will blow you away whatever role she is given.
No school holidays – I know that will never happen but transitions of any kind are a challenge so end of term fun and start of a new term are exhausting – I hear you say have have the holiday to relax – imagine a holiday to somewhere you haven’t been and you want to just do whatever takes your fancy – my idea of heaven – will never work for Alana
I can’t wait for September as it means the anxiety caused by SATs and a move of school will be behind us. It won’t be easy but she is ready for the transition (you should all be proud of your transition team) I am part of groups all over the country and there are very few schools that offer something so special)
I want to leave you with one statement.
Every child is different this is Alana’s story and many other parents could have stood here and told their story. Be open to their differences, embrace them and they will thrive and make you all proud of their achievements.