I work for Family Action’s Autism and ADHD support service, but I first became involved with Family Action as a client, as I’d had years of struggle and challenges with school and education with my eldest.
Nobody had ever spoken to me kindly
I was waiting for an assessment for my son at the time, and we were in a very desperate situation with the school as they weren’t supporting him, and we were at crisis point.
I’d pushed and pushed with school and other agencies to help me, but they would say my son was just going through a phase and would grow out of it. Or they blamed his outbursts as related to behaviour, and they couldn’t see he was dysregulated and not in control of his reactions. I felt like I was gaslit as a neurotic and overprotective mother, but I could see how much my son was struggling.
I was so concerned for my son’s self-esteem and mental health. I was picking him up every day and he was hysterical. It was breaking point for both of us.
We eventually deregistered him from his first primary school on his 7th birthday. We were told my son was with the headteacher, and again he was hysterically crying, this time because they took his birthday badge away from him as he was fidgeting with it. We were utterly heartbroken.
I was at a point where nobody had ever spoken to me kindly. No-one had ever given me any kind of compassion or expertise regarding my situation and how it feels to be advocating for your neurodiverse child.
A real thirst for knowledge
What’s really sad is that he’s very smart and he absolutely loves learning – he’s an avid reader who’s always got his head in a book, he loves coding and nature, and he has lots of special interests about things like sharks or fish or history. He’s got a real thirst for knowledge.
However, because he’s very smart, his attendance is high, and he performs really well academically, it felt like the school thought that it didn’t matter that he had no friends and sat alone at lunch.
Listened to for the first time
I received my initial welcome call from Family Action. I wasn’t in a great place, and my Family Support Worker was really kind and offered so much support and understanding. My son’s needs were presenting higher, and he was getting more dysregulated and disruptive. Now I realise the school should have done the EHCP, but at the time I was made to feel they wouldn’t do it and if I wanted to pursue it I had to do it myself.
This is why I felt so overwhelmed and why Family Action’s support was so welcomed. Plus, they helped me see that I didn’t need an EHCP to get changes in place for my son. I think what appealed to me was that Family Action’s support is non-biased, it’s not contracted to the schools in any way.
Family Action helped me advocate for him
They made me feel able and empowered and gave me the validation to keep fighting and taught me I already had everything I needed within myself to make positive changes for my son.
They gave me the language and the vocabulary to speak to organisations and then, when I was really upset because reasonable adjustments hadn’t been made, they actually emailed the SENCO for me, and just getting an email sent on our behalf by a professional really changed things for us. The school started to listen and take my concerns seriously.
My son is doing so well now. I have an EHCP in place for him and because of the work of Family Action he hasn’t needed to use the reduced timetable available to him as much. There are no emotional outbursts at school anymore and he’s got Lego therapy, daily check ins, emotional support, and an area to go to at lunch if play is too overwhelming. All these things that have come about because I was more informed of his rights and what schools could change and put in place to help him. All through my conversations with Family Action.
But what’s best is that he’s got friends like him. He’s found friends that were also on the periphery… and it’s nice, he’s found his people.
Helping other families like mine
It was because of the rapport I’d built up with the service that I decided to apply for a position when one became available. Now I love the role I have within the team, and I feel so honoured to be part of it all helping other families like mine.
Being a parent of a neurodivergent child and having no support was a black hole and felt hopeless. Family Action definitely pulled me out of that hole.
I only wish there was funding for more Family Action services like this across the country, as I sometimes find it quite sad that there are many people on massive waiting lists with little or no support, as that’s where I was at.
Thank you Family Action for changing our lives in more ways than one.
