"For the first time in a year, I feel like I can lift my head up, take a breath and enjoy the view"
Cara Conquest writes about learning that her son was autistic and navigating years of paperwork and advocacy before her son finally got a space at an SEN school, where she is now a parent governor.
It’s been five years since we received my son’s autism diagnosis.
A year before the pandemic turned everyone’s lives upside down, I was in a tailspin of my own, navigating a new reality, delivered in black and white, with a ton of paperwork.
At three years old, he was diagnosed early, and he’s now eight.
We’ve had a few years now to grow into what it means to be neurodiverse family, and find a new kind of normal that thankfully, doesn’t need to look like anyone else’s, but that can sometimes feel like we may be living on a different planet.
I found early motherhood tough, the transition from a full-time career that I loved to full time sleep deprivation (my son only slept in three-hour blocks for nearly two years) and playgroups, hit me like a ton of bricks.
But, like most parents, we found ways to manage the nighttime crisis, tag team the pick-ups and drop offs, the day-to-day hum drum minutiae that comes together to make a family tick, although never like clockwork – and each unique in its quiet rhythm.
It was our off-beat singularity that surprised me.
I had assumed that we are more similar than different to other parents, and at the heart of it we probably are. In that we love our kids. We'll do irrational, crazy stupid things for them, that sleep deprivation fucks us all up, that nothing is as we expected to be.
Sometimes it’s better. And sometimes it’s not. But we share the first smiles, first steps, first milestones together. We can count on sharing birthday cakes at parties, and moan about nursery fees, and fret about schools, we do this together, at roughly the same time. Comparing notes.
Until we don't.
I noticed Sam wasn't picking up language at the same rate as his peers around the 20 month mark. The penny dropped for me on a bright spring morning, I had met a friend in the park whose daughter was almost the same age. This tiny slip of a thing who was merrily chatting about fluffy white dogs and what flavour ice-cream she wanted, pointing enthusiastically from her pushchair. While my son careened off in the opposite direction, chasing a crow, I realised I had no idea what flavour of ice-cream he preferred. He couldn’t tell me. And he wouldn’t sit in the pushchair, ever.
Being steeped in parenting manuals, I wrote it off as being a Super Tiger mother who was expecting far too much of her toddler son. When he refused to engage in playgroup activities, preferring to investigate the out of bounds church offices, or to just literally try to climb the walls - I told myself he was probably introverted and just didn't like new people.
When he bolted off into the sunset without even a backward glance at any given opportunity, I scoffed and said he was incredibly confident and independent. He wasn't making eye contact because he was shy, and therefore not interested in strangers. He was used to us anticipating his needs so didn't need to speak. He was, just himself, and all of this worry was just very normal parent anxiety.
And it was. Until it wasn't.
At the two-year check it was suggested by the community nurses that we see the paediatrician, who diagnosed significant speech delay with attention/social and communication difficulties. So began the building of The File. All parents of SEN kids will have one, or a drawer, or an entire wing dedicated to the paperwork. It’s never ending and also essential, and my advice if you are not hot on bureaucracy is to find someone to help you. It can feel hugely overwhelming, and a steady hand and an eye for detail is always needed. That and post it notes everywhere to remind you what needs doing next.
I still can't read the first report without feeling queasy. It’s blunt and medical and objective, which as a parent you can never be about your child, and again why having a friend who can help you navigate the process is invaluable.
We were referred for everything and introduced to all of the teams. A few were exhausting - OT (rejected once, appealed, waited a year, finally got assessed two years later), and Audiology, (four appointments where he refused to wear headphones) plus a wild goose chase to find an educational psychologist who only came into play when we finally were on the EHCP path.
The game changer was finally being accepted by the Speech and Language Therapy team. My son adored his speech therapist and made huge progress every day. We learned about echolalia, which for my son manifested as whole phrases he would repeat for comfort, as well as for communication. We learned about modelling and visual aids and pausing for response.
Because he struggled to tell us how he felt, I was encouraged to become his sensory detective, paying to attention to what types of environments caused him distress (anywhere with a closed door) where he felt relaxed (in familiar surroundings), what textures he could tolerate, what food he would eat (only jam sandwiches for nearly a year), what tones and colours and smells and sounds would be triggering or relaxing.
A year later, we had his diagnosis confirmed.
A good friend had the grace and wisdom to tell me, while I recounted our meeting with the diagnostic team through hiccups of tears, that the first year would be hard. That even though the diagnosis was expected, and requested, to go easy on each other and myself. That I was allowed to feel all the things all at once. Relief, fury, confusion, fear, hope, worry, sadness to name only the ones I could articulate. There were many I could not.
A surprise was the relief, that I could now parent with impunity, that I had permission to no longer follow the rules, a gut instinct I knew to be right, but which had been so at odds with the norm was now validated. We finally had a pass to be ourselves.
Our bossy and jovial speech therapist advised that I spend some time wallowing in the often-forbidden emotion of self-pity, to really feel it, and get it out of my system. But not to ignore it. We had to run the gamut of it all to move forward. She spoke from her own experience, and was kind.
I ignored her and, in a bid, not to feel it, I spent most of the first few months reading all of the literature I could get my hands on. I reached out to people online, I read biographies, I swatted up on all of the council’s recommended guidelines. I went to conferences on the weekend. I started to feel heavy with the weight of it, the stats, the lack of resource, the negativity. I got completely consumed by it and had to stop or risk full burnout.
Somewhere between the academic journals, the blogs written by autistic adults on ethical therapies, and the forums on Facebook I realised I wouldn’t be able to study my way out of this. Our road map was in front of me, making words out of magnetic letters on the fridge and collecting every peg in the house to create a rainbow on the carpet, singing Iggy Pop's The Passenger on repeat.
I started listening, and crucially, began accepting help. With the support of an amazing team in the borough, we transitioned Sam from mainstream nursery to a setting that catered for his needs within a mainstream pre-school.
We started working with the committed head teacher there and started unlearning and re-learning. We accessed parent support groups and training, and finally after many months of work (alongside normal day to day work!) his Education, Health and Care plan (EHCP) was approved and with that, a place at a SEN (special education needs) school in the borough.
I wrote this on the day we had the school place confirmed.
For the first time in a year I feel like I can lift my head up, take a breath and enjoy the view. It’s amazing, in its quirky, definitely not normal way. Today, we have fifteen multicoloured balloons in the bedroom, five rainbow coloured hourglasses dotted around the house to remind us when we’re due to redo the puzzles. Calendars and wall charts and pencils for colouring and writing and drawing, literally everywhere. On any given day our flat looks like a Pinterest craft board exploded. Chaos and order humming together seamlessly to the tune of the Go-Jetters theme song.
My son has been at that school for the last four years and is thriving. I took up a position as a parent governor, both to support the school, and to learn more about education for neurodiverse children - with the added bonus of having a little insight into the working of the SEN provision in the council.
It’s been invaluable to have connections within his educational setting and to see the inner workings and challenges a SEN school has. What has struck me throughout is the dedication, passion and tenacity the staff have – for all the awful news stories you see circulated online, there are also examples of people who care deeply about making education accessible, inclusive and empowering.
It’s not all a utopian vision of the future. I lose sleep every night planning and thinking about what we will do about a secondary school place. Life stuff continues to happen too. My marriage ended, and we then had to add co-parenting to the mix, on top of every other very well researched and thought-out plan. Like arranging school transport between two houses and not one. Learning to help our son work through his big feelings while we do the same with ours. Working out what is standard eight year old behaviour vs a new stim or an additional coping method. How we he help him understand his brain too, and how to advocate for himself when we are not around, with his friends or at school.
But if I were to look for silver linings they would be this. I am more equipped to navigate difficulty in all its forms, I can pivot and realign quickly and calmly. I have found a steely sense of purpose, a kind of laser focus that has meant I can see very clearly what needs doing when. I have been forced to get clear about my boundaries for my health (physical, emotional, spiritual). I am still learning to enforce them. I know who I can rely on to help, and crucially, I have learned to ask.
Help has come from unexpected places, there are extraordinary people both in a professional capacity and new friends I have found along the way. Really, the fear is based in the unknown, and people who have been in it before can help me navigate it, and these people sometimes surprise me. Friends educate me about policy and politics, both on the spectrum and not. They text me their experiences - warts and all - to give me the heads up on what not to do, and what all the acronyms mean. We don’t always agree, and that’s ok.
Things are changing too, even in the short five years I have been on this journey. I am thrilled watching Gen Z talking so openly about their neurodiversity on TikTok, comparing their different flavours of the ‘Tism’. Autistic authors like Elle McNicoll who champion neurodiversity, and whose wonderfully colourful characters are incredible role models for everyone. Challenging the status quo, and building a different kind of future for children like mine. Access to information has never been better, and that gives me hope.
Mostly, our day-to-day is punctuated with my son happily talking to himself, or stimming. Or arguing with me about screen time. Our routines are baggy enough to accommodate change but anchored enough to make him feel safe and reduce his anxiety. I don’t always get this right, but for the most part, a lot of what I had to learn to support my son feels like second nature now.
He’s as cheeky as his neurotypical friends, telling me his new special interest is curse words, so I have to teach them all to him. He has already figured out how to pull a fast one, and can suss out a password in seconds.
Our new normal, is just that - our world just has a slightly different centre of gravity.
Cara’s recommendations…
Resources / Books
How to Raise A Happy Autistic Child
Wheel Spectrum vs ‘more or less autistic’
Charities
Courses
 | A guest post by
|
Beautiful writing. My son was diagnosed a year ago and I feel knee-deep in the “navigating.” Reading stories like these are welcome reminders that I’m not alone in this!
Thank you for writing this so beautifully, and sharing. We’re further down the line age wise and later in diagnosis - new normal building at secondary stage has been almost impossible at times. But there’s so much I recognise and can take comfort from here ❤️ I’ve held this idea of radial softness with it because so much of the world seems hard for him, using them as navigator rang so true. And jeez the paperwork! The appointments! The logistics! Medals all round.