This post is for anyone who woke up this morning and wished they didn't have to fight. It’s for anyone who wished the sky would stay dark and the candles could keep burning so the day could hover on a gentle pause. And it’s for anyone who frequently realises that their journey in the grown-up world has been wildly different to the one they imagined.
I woke up this morning and took one sweet daughter to the bus stop so she could travel down to the city to her school. Next I wrote for ninety minutes and it wasn’t enough to satisfy me. It also wasn’t enough for me to earn much money. Then I woke up the three daughters still dozing and spent the day facilitating their learning. It is almost 4pm now and I am writing this while the littlest one is poorly on the sofa, the oldest one has just finished learning Spanish online, and my often-quiet one is painting with her watercolours. In one hour I will collect my other daughter and get the tea on the table. Later tonight I will try to attend an online workshop to inspire my writing and remind myself who I am, and it will be a juggle amongst the bedtimes and the chatter of girls and the coming in and out of my room to borrow a hairbrush or look for the cat.
Before Christmas, I recorded a conversation for the SEND Parenting podcast. It was to promote the paperback publication of Twelve Moons, but is more aligned with where I am in my life right now. I had a great conversation with Dr Olivia Kessel, and there were some takeaways that I thought might help you if you are in a similar situation. Below are some clips to accompany my ADVICE FOR LIFE, but first a brief bit of background…
What’s happening?
In less than 6 weeks I am due to attend a tribunal hearing, because I am appealing my local authority’s decisions not to issue an EHCP (Education Health Care Plan) for one of my daughters. For those of you new to the merry hell that is me navigating the education system for my four children, this current battle started in early 2022 when my child became too unwell to go to school. Fast forward over two years and my child has attended more than one hundred appointments with child mental health services, been referred to a specialist service for further complex neurodevelopmental assessments and requires full time care. I won’t share more details about her health here, but can say that she is slowly unfurling, and much of her recovery is down to the way she is able to access learning at home, where she feels safe. Sadly the local authority disagrees: despite an application I put together that includes pages of supporting evidence from medical and education professionals, from me, and from my daughter herself, the people with the money insist she should be at school. The reality is that she can’t, and she is being failed by those who are in a position to help her.
It’s not just me - this is a national crisis
My story is one of thousands of similar stories up and down the country. Even within my family this is nothing new - a few years ago I had the same argument about another daughter. I managed to extract a Personal Budget for her after being rejected and then attending mediation, but this time it has been much harder. Money is even tighter now for children who have complex learning needs: years of swingeing cuts have decimated an already meagre budget, an inflexible curriculum has made it harder for all children to access an education, and the pandemic shattered the fragile structure onto which many children were barely clinging. It has been a national crisis waiting to happen, and my family sits at the centre of it, fending it off with windswept beach walks and noses pressed at windows as stars prick the sky.
I’m going to share some extracts with you from the podcast that highlight some of the themes I know are important to many of you. During moments of darkness I have been drawn to the glare of my phone, where a WhatsApp group formed of mothers like me, mothers who feel close to becoming lost within these broken systems, type reassurances onto the screen that tell me I am not alone. It’s why I write about our experience - I know from the messages I receive that when one of us raises our voice, other people’s are heard in the echoes, and the reverberations reach further and further until they can no longer be ignored.
Here are some things I have learned along the way:
The education system feels unfair because it is unfair. I grew up thinking that life would run smoothly if everyone followed the rules. I was naive and wrong. Broken systems are full of people who are under-resourced, untrained and incompetent. There are good people, of course there are, but once a structure falls in on itself it becomes very difficult for it to function properly, and like a long line of dominoes it collapses, crushing even those who have good intentions. Because the system is so damaged and cannot meet need, the people within it try to cover this up, so those in need of support experience a lot of gaslighting, ignoring and unhelpful behaviours. One of the hardest things about this situation is the way in which you are likely to feel constantly disappointed by people - especially if you are a romantic idealist like me - it can be soul-crushing.
You become a reluctant ‘tiger mum’, forced to bare teeth and claws when you want to curl up in the sun and lick your tail. Because of all the aforementioned gaslighting and general unhelpfulness you will be required to repeat ad nauseam the details of your reality, and advocate for your child until you feel like you will break. Sometimes you will break and I want you to know that this is ok, because you are just one person trying to fight an entire massive system. I look like I’m about to cry in this thumbnail but really I’m just cross. I do cry though, and if I do it when I am advocating, the professionals think I am weak and broken and irrational, so I try very hard to do it quietly in my bedroom.
Even though you might want to crawl into a hole and hope everything will go away, I am a strong believer in obtaining the correct diagnosis for your child. This is so much easier said than done and the attempt might almost finish you off. Some people disagree with me, they think I am obsessed with labels. I try not to surround myself with people who think this, although unfortunately some of those people are the ones who are supposed to be helping me with diagnostic assessments. This is another system that is broken - it can take years to get an assessment for neurodevelopment conditions, and if you have a child who is good at masking it can feel almost impossible. I am in that world at the moment. But I have done this before, and the right diagnosis has been one of the main contributors to recovery for that child so, if you can, keep going. But also be kind to yourself if it almost breaks you - you are doing your best in a bad situation and you must look after yourself. I say these words knowing full well that I spent an hour at the weekend howling with exhaustion because I hadn’t been looking after myself. I’m a work in progress so be gentle…
Keep your tribe close. When your child/ren cannot attend school or are denied an appropriate education, time is precious. You will find yourself saying ‘no’ when you want to say ‘yes’ and run for the hills. You will become tired of trying to explain your situation to people, and some people will not work very hard to understand. They might say ‘call me if I can help’, but everyone knows it is very hard to ask for help, especially if you don’t know where to start because the amount of help you need feels so immense. The good news is that there are people out there who are DIAMONDS: they will not judge you, or pity you, they will listen and they will care. Cherish these diamonds and try to surround yourself with their good energy. This is the way to fend off the toxic horror that emanates from broken systems.
Is this helpful? Do you feel less alone? Have I made you nod in acknowledgement or weep in despair? Like I said, it’s ok to cry, we all do, but if you take anything away from this please know that you are not on your own and you are doing a good job.
I SEE YOU X
Very helpful! I worry sometimes that my world has become that echo chamber I don't want to inhabit, but I remind myself that it's for this season of caring for children with extraordinary needs who will not flourish if I don't protect myself from unravelling. There are only so many times I can explain why I can't or won't do something or go somewhere, only so many times I can reply with 'I'm sorry I can't answer the phone anymore, we can WhatsApp message?' before those friends disappear in a cloud of rejection and frustration that I am not the friend they need right now. My energy is not more precious than anyone else's but it is precious nonetheless, and I have to spend it well!
I discovered this send parenting podcast through you being on it, and I was able to listen to quite a few really good ones over the weekend! Thank you
Well done for writing this, Caro. I can feel between the lines that is is not easy, but I know this post will help so many people x