Both of my daughters have ADHD, but my eldest daughter also has sensory and autism traits. She still doesn’t have a formal diagnosis for this, even though she’s 11, because the assessments lapsed due to COVID.
When our eldest daughter went to nursery she found things a bit difficult, but I thought “she’s a child, there’s nothing wrong with her”.
The ladies who worked there told me “she’s such a busy bee… She has to be everywhere and play with everything and even if she’s moved on from an activity you can’t put anything away”.
She was also very forward in riding a bike and kicking a ball, and that theme continued as she grew up – she couldn’t write her name but could hold a paintbrush and create something.
So, because I always saw the best in her, when she moved on to school I didn’t know she was struggling at first.
I expected the school to flag it up to me or my wife if there was a problem, but it didn’t happen until one particular day at school.
I went to pick her up and the teacher came and told me she’d spent most of the day hiding out in a room next to the classroom, and they’d kind of just let her do so.
I thought I’d take this opportunity to ask why she didn’t have reading books and the teacher said “she struggles with reading. We sound out singular letters, but she’ll give a different sound back”.
My ears pricked up. I knew she could do basic words because I sat down with her and did them at home, so when we got back to our house I had to film her and show the teacher later.
She couldn’t believe it was her.
That’s when we found my daughter’s memory behaved in a specific way so if I sat with her and we did basic words, she would learn them but, come the morning, she wouldn’t know, or would be confused.
In year one the school had just labelled her as active and not really listening.
Even so, she spent reception and years one and two at the school because I spoke to a new teacher coming in to teach the class. She was very helpful, and I was happy to remain open-minded and try a new approach.
I am a strong believer that some schools and teachers work for some children and not for others… it’s a “does the shoe fit?” type thing.
“I am a strong believer that some schools and teachers work for some children and not for others… it’s a “does the shoe fit?” type thing.”
But then that teacher left and the aspirations in my daughter’s report became “to be able to sit down for five minutes” and I thought “no, no, no”.
It was a problem for me; I can pay for my child to go to an after-school club where they can have fun. In school I want them to learn whilst having fun.
I felt it had become about making her pliable rather than helping her – That’s what I felt it came down to and that’s why we went to look at other another schools.
We had a good feeling about one and the children were happy and ready to move when COVID struck and lockdown began.
It wasn’t that bad in all honesty though… In fact, it was lovely having them here.
I went back over all the fundamental basics: we made faces and people out of alphabet letters, we played hopscotch and took walks with our dogs down to the woods to look at leaves, and trees and flowers.
My friend commented that COVID suited us all, and I think the reason was that they’d had such a bad time in the years before, and it was nice to be with them and have a fresh start before they went back to the new school.
I certainly had a lot of support from the new school during that period, as they agreed to send me stuff that was lower than my daughter’s year group and stay in contact with us.
Even though they seemed very supportive I knew my children would need support for the whole of their academic life and I wanted to ensure that we had a way to secure some kind of guarantee for the future.
I sat outside surfing the internet one day, found Family Action’s SENDIAS service and emailed them that night.
Within a day I had a phone call to touch base and we had a lengthy chat where I explained what we wanted to apply for and they told us what we may or may not get.
We wanted an Education, Health and Care Plan, which guarantees the support my daughter would receive, and the SENDIASS worker explained how lengthy the process can be and offered to help us fill out the forms.
It was difficult without a formal diagnosis of autism to accompany her ADHD diagnosis, both for the form itself and because the experts who assign that label can also tell you how to help your child.
The council declined that initial application, but Family Action told me they often do, and talked me through whether I wanted to appeal.
That was the most important thing about Family Action: I was always asked “where do you want to take things?”.
It was never about putting words in your mouth.
I think the appeal paperwork was quite heavy and I needed help with what to put as when it’s your child everything is “normal”. Family Action helped bring out things that I would have missed through conversation, by allowing me to discuss the differences between what worked for her in comparison to her peers.
Family Action helped bring out things that I would have missed through conversation, by allowing me to discuss the differences between what worked for her in comparison to her peers.
“Family Action helped bring out things that I would have missed through conversation, by allowing me to discuss the differences between what worked for her in comparison to her peers.”
For example, my daughter would say her legs and feet hurt, and that would affect her doing her school work and, with the aid of a physician, we realised that was related to sensory issues.
We also had a conversation where she said she just didn’t understand numbers… She told me “I hate them. I can’t do anything with them”, and that affected everything – Telling the time and time awareness.
We had a couple of educational psychologists involved in the end, but thankfully we have her plan in place now. She loves her comprehensive school – they have taken the time to know her and her needs.
I’m pleased as the plan means she can be in mainstream schooling, but her support can’t be taken away from her.
Even when she goes to college people can read her plan and get an overview of what works.
Nowadays my children come out of school smiling and my eldest is doing well thanks to the support that’s in place.
I’m also impressed by the schools’ attitude because I know if something isn’t working they will make changes and find solutions.
I think that’s the thing – one size doesn’t fit all.
I believe the only advice that applies to all children with special educational needs is that support should be tailored.
I’m now working towards a degree in sports science, and I’m particularly interested in children’s physical and psychological health in sports. I’m very much a person that, before I see the results, likes to see how the mechanics of things work… I’m the sort of person who enjoys making, building and fixing whatever I can.
Looking at public health and the brain makes me think about the “system” of schooling and how it works for children with additional needs… particularly the children who are more active than others – the ones we call on every time there’s a sports day.
My aim is to look at that relationship through my studies and find out the workings of it.
We’re sending certain children into schools that aren’t fully built and equipped for them and I believe that, for children who aren’t neurotypical, their school life would be better if it wasn’t just about sitting down to learn.
“We’re sending certain children into schools that aren’t fully built and equipped for them and I believe that, for children who aren’t neurotypical, their school life would be better if it wasn’t just about sitting down to learn”
That will be my educational goal and what I’m going to work towards in employment once my degree is finished, with the aim of supporting other families.
We went through the same process with our youngest daughter as our eldest. But that’s fine – you’ve got to realise that there’s just red tape around everything, but I don’t think I ever will stop working at it because they need support.
While they’re struggling I won’t stop fighting, and that’s that.
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