By Liz | Published on March 11, 2021 | 12 Minute Read
“I don’t want to be ‘that’ parent,” was my opening line at the very first meeting I attended to try to get some additional support for my son at school, who was four and partway through the Autism diagnostic pathway at the time. I meant it too – as a new school Mum I wanted to blend in, possibly join the PTA. I wanted to be known as nice (achievable), respectable (achievable in my former work-wear with a good night’s sleep or enough slap to hide a bad one) and uncontroversial. I didn’t want to stand out as a pushy, pain-in-the-backside, eye-roll-inducing fire starter.
We’d had a pretty smooth path to diagnosis. My son’s nursery were the ones to kick-start the referral process to Paediatrics after raising their concerns with me and seeking my permission. Prior to that I’d had some initial suspicions but in my naivety I thought if there was ‘anything there’ it’d come out at school. Looking back, of course, all the signs were there but they were subtle. Added to that, Spud could count to 100, converse like an adult and recognise and name complex shapes at age two. It wasn’t until a teacher friend expressed her surprise at his abilities that I realised they were perhaps unusual. The nursery manager opened the conversation by telling me how clever Spud was and I nodded along, feeling slightly smug at my ability to spawn a child-genius. “But….” she continued.
She went on to gently raise her concerns about Spud’s struggles with things like social interaction and his distress at transitioning between activities. I asked her straight away if she thought Spud was Autistic, despite not knowing very much at all about Autism at that point. Mother’s instinct perhaps? The manager stumbled over her words, saying she didn’t like to ‘label’ children but it became clearer in the coming weeks that Autism was what the evidence was pointing towards. When I began to research I felt as though I was reading articles written specifically about my son.
The diagnostic process was fairly lengthy by virtue of the fact it was a multi-disciplinary, so there was the initial wait to see all the different professionals that would contribute their advice, then the wait for the panel meeting that took place at the end where a decision would be reached. But it wasn’t difficult - the appointments went smoothly, we were blessed with a thorough Paediatrician and a good set of contributing professionals, so by the time of the panel meeting enough evidence had been collated for a decision to be reached, meaning things didn’t drag any further on.
"When I began to research, I felt as though I was reading articles written specifically about my son."
I’m very grateful for my experience with the nursery and the fact I didn’t have to fight for a diagnosis but in truth it did make me somewhat spoiled. I expected school to be an extension of what I’d already experienced, with staff falling over themselves to help me. I thought support would be put in place and things would just happen behind the scenes without much involvement from me. But it was going to take a jolly good fight to get the necessary support for a bright, articulate little boy who didn’t disrupt the class and I was completely unprepared for the lengths I would have to go to, to get that support in place.
It soon became clear that if I wanted Spud to have the right support via an EHC plan, I needed to up my game and find out for myself how to get one in place. I attended a SEND Law parent course ran by the IPSEA Charity and have since completed further studies in SEND Law through IPSEA, all of which has been both informative and hugely empowering. Knowledge really is power and having it makes you feel as though you can take on the world! I came across IPSEA by chance, when they had a stall at The Autism Show and feel incredibly lucky that I did so when Spud was still very young. Having the right legal information from the off meant that I started my EHCP journey with the best foot forward and didn’t spend years blinded my misinformation as so many parents, through no fault of their own, unfortunately do. For this reason, I like to signpost parents to IPSEA whenever I can, because the earlier we can fully understand our children’s rights, the earlier we can begin to advocate effectively for them.
Fast forward a few years from that initial meeting and I’m proud to be the parent-advocate that I am. Understanding not just the law and my son’s rights but also having a deep understanding of his needs and how they are best met has given me confidence in my advocacy and I no longer worry what people will think of me. Spud is reaping the rewards of the support he has and it’s amazing to see him proudly achieving milestones. Of course, there will always be different struggles and hurdles – who knows what the effects of the repeated lockdowns will be? But I’m confident in the amazing team we have around us that I pretty much built single-handedly and whilst securing the EHCP has been the hardest thing I’ve ever done, I’ve no regrets and would do it all again in a heartbeat. I’m often told Spud is lucky to have me but the opposite is true. I’m an older, wiser, far better version of myself and it’s all down to him.
In addition to gaining sound knowledge of the law and having a good understanding of how your child’s needs are best met, if I were to give any other tips to parents starting out on their EHCP journey I’d say:-
* That it may often feel as though the whole world is against you, that no-one else can see what you can see. It’s easy to take it personally if others don’t agree with you but for your own health try not to. Instead treat the process like work and be business like when stating your case. Spud attends a lovely school with very supportive staff, but of course we don’t agree on everything 100% of the time. That’s natural, it’s human and it’s OK to disagree as long as there’s mutual respect. There are plenty of excellent teachers, Heads and SENCOs with a real passion for their work, but no-one will have the same passion to fight for your individual child as you. It often takes that animalistic, parental love to create the tenacity required to cut through the red tape, tick boxes and LA policy that barricades the pathway to support for children with SEND.
* Pick your battles – people will put your nose out of joint along the way but conserve your energy for the battles that really matter.
* See yourself as the lead professional in your child’s case. Have confidence in yourself! You know your child best.
* Choose business-dress for meetings. Looks shouldn’t matter but it’s not about what others think, it’s about how you feel. Smart clothing will give you confidence and make you feel equal to the others in attendance.
* One of the best pieces of advice I’ve been given is to try to take the emotion out of the situation. It’s easy to let our hearts rule our heads when discussing our own children but try not to do this. Instead, keep focus on where the law, your child’s rights and any evidence provided for their case can assist you in securing what they need, rather than focussing on emotive issues. You can cry on the kitchen floor when you get home. On that subject – don’t agree to meetings that will finish at pickup time! Make sure you’ll get some time to yourself first, to have a brew and process.
In the last quarter of 2020, I set up an Instagram account @thatsenmum to share the things I’ve learned so far and hopefully encourage others not to be afraid when seeking support. I’ve found it fantastic to be part of a community of warrior Mums and Dads all sharing experiences, ideas and information. As parents, we’re always wanting to learn more, do more, know more; but sometimes it’s nice to take a moment to look what’s going well and think “I did that, I made that happen” I now wear my ‘that parent’ badge with pride and I hope to inspire others to do the same.
About the Author
SEN and Disability advocate, Mum to Spud and creator of @thatsenmum Instagram account.