If I Knew Then What I Know Now

In 2017, after nearly 4 years of what felt like a major battering , from all sides, the crusade for supporting Child 1 culminated in a diagnosis of Autism. At that time, I came across Pathological Demand Avoidance (PDA), a form of autism defined as “PDA is widely understood to be a profile on the autism spectrum, involving avoidance of everyday demands and the use of ‘social’ strategies as part of this avoidance” (taken from The PDA Society) PDA is not recognised in Britain as yet but the USA do, and Child 1 fitted the profile perfectly. 5 years later, in 2022 our diagnosis was amended to ‘Autism with a PDA profile’. When the consultant gave us the diagnosis, he asked me if I was sure I wanted it. I remember thinking, why would I go through all this heart ache and fight all these battles, to then turn it down?

I had friends in similar situations to me, turn down the diagnosis for fear of their child being labelled. I respect their choices and understand their personal reasons but I wanted it for my child because I needed to know that Child 1 would have access to resources and support that would allow them to thrive. I naively thought that once we had the diagnosis, obtaining the right support would be easier, smooth sailing. I couldn’t have been more wrong! I would have to continue to battle for every single piece of support needed.

Well, I have battled on, trying to get the help for my child that should have been naturally forthcoming, in what were already extremely difficult circumstances. I spent hours, trawling the web, speaking to various people in the field of expertise, reading books, articles and Facebook pages. I attended every parenting and Autism course that I was told I must/should attend, in my fight to find the support for my child but still the battle continued. I tried everything I possibly could to to learn and fill my knowledge gaps and was more than open to listening and taking advice but none of it made a difference to the unrealistic processes and ‘not fit for purpose’ system. This battle made me question not only the system but myself too and nearly drove me over the edge a number of times because the system DID NOT help.

This is when I came across SENDiass. A school support worker told me about them and OH MY GOD!!!! Had I not found them, I am certain that I would be in a mental institute today. The support, advice and guidance they offered, enabled me to not only continue fighting for my child but helped me work towards achieving and securing the right support. They reduced my stress levels, kept me focused on the task and became mine and my child’s biggest support system. The battles we fought, considering the circumstances, shouldn’t have happened but in a system that is so broken, SENDiass came to our rescue.

They helped me advocate for my child with the school, local education authority, local council and more. They (metaphorically) held my hand through meetings, writing letters, arguing cases, challenging the norm….all so that Child 1 could thrive and reach her potential. A potential that had been thwarted by events and the system and resulted in a mental health crisis for Child 1, that nearly broke us as a family. 2 years later, in 2023, with my permission, SENDiass have taken our experience and used it as a case study to highlight the ongoing challenges we had to deal with, and we have been through pretty much every challenge a family could encounter. I gladly agreed because if we can prevent this ‘collapsing building’ from happening to anyone else, then that, I believe, is a huge win both in learning and value for others.

It was then, that I was invited to be a PC. But what is a PC, what do they do? “Being a Parent Champion for SENDiass is a rewarding role that involves supporting parents of children with special educational needs and disabilities (SEND). More specifically, a PC is a volunteer who has first hand experience navigating the SEND system for their own child. They provide valuable support to other parents and carers.“

And, how exactly does a PC offer support, I hear you ask? Firstly, by offering a listening ear and signposting to groups, resources and organisations, that we feel are helpful to parents/carers at the point that they come to us. What is discussed with us, is confidential and wont be share outside of the session unless asked to by the parent/carer or if we feel there is a safeguarding concern. We all complete an extensive induction program and have an enhanced DBS in order to fulfil the role . We provide initial information, advice, and support related to the local SEND offer and many other services available.

From my own experience, its the ‘listening’ part that has the biggest impact. For parents to able to let it all out and openly discuss their worries and concerns without being judged, is a crucial part to be able to keep going. As humans we are far too quick to judge others but when you have been through the experience of challenging a system for your SEN child, your ‘judgement radar’ quickly shrinks because you realise, more than most, that as parents (whether with SEN or not) we don’t need judgement. We need kindness, understanding, support and being able to let all those feelings of despair, loss and frustration out, without being made to feel useless, incompetent or worse, not fit to be a parent. As they saying goes, “unless you’ve walked a mile in their shoes” you REALLY cannot judge!

I’ve had a few parents come to me in my PC role, telling me their child doesn’t have a formal diagnoses. As a PC, I am there to listen to any parent that has a concern about their child’s learning with or without a diagnosis.

I and other PC’s (and what an amazing team of people they are), deliver sessions in various primary and secondary schools across Bournemouth, Christchurch, and Poole (BCP). To see if your child’s school has a PC, check on the school website, your schools SENCO, the SENDiass website (under the Parent Champion section) or in school newsletters as it is here that you will find the relevant information. If they don’t have one, you could speak to the school office and let them know other schools are offering a confidential listening space and you feel it would be helpful to you.

Initially when I started in the role, I felt incredibly nervous. What information and support can I offer? Will parents leave me feeling better equipped? have more knowledge of where to go? what to do next? etc. The worry was enormous because I knew what it felt like…..drowning in choppy waters and not having a clue what to do or whom to speak to, where to find the anchor to stop me from drowning. I was so so worried about letting parents down because they were in crisis and didn’t know where to turn.

Little did I realise that all the heartache, tears and battles that I had been through, would offer someone else short cuts in their journey. Little did I realise that my brain was actually a wellspring of information that the parents I was meeting, were still unaware of and I was more than happy to share.

I have now been in the role of a PC for nearly a year and though I still worry that I won’t be enough for the parents that come to me, what I have been through as a parent and us as a family, means I have a wealth of knowledge to share and impart on others just starting this journey. Having parents tell me how much they appreciated being able to talk about their situation without being judged, how they feel they have tangible things to do following their time with me and how they feel a little more empowered after seeing me, brings me so much joy. I can’t fix things for the families that come to me but I can hear them, understand them and help them find avenues to continue to fight for their own children, for the resources that will help them to thrive.

I didn’t think I had anything more to give but meeting parents in similar situations to me, bizarrely gave me strength and knowing that I am helping make a difference to a parent and subsequently their child, is an enormously rewarding feeling when you feel like the only thing you know is being battered. Every council in the UK has to have a SENDiass department and more and more of them are adopting a form of the PC role too so if you want to be apart of this amazing group of people check out your local council website and if you are in the BCP area you can click on the PC link above in this article.

Wherever you are in your pursuit of helping your child thrive as they are, remember you are not alone and a PC may be the step you need, to get you heading in the right direction.

No matter how much I wish I could, I can’t wave a magic wand but I can help parents/carers see they are not alone and that with help and support, us SEND parents can keep going, together. No judgement, no criticism just a listening ear and steps to move forward, one step at a time.

After each session, I have a ‘debriefing’ meeting with my supervisor. I find these meetings invaluable in that not only can I confirm that I have offered the right resources and advice but also to help me see that even though I feel I am not always as much of a help as I’d like to be, I am in fact more than that and I am very lucky and grateful to have a ‘boss’ that helps all of us PC’s to see the light that we shine for other parents in similar situations.

Let the fight continue for together we can, eventually, get the support we need!!