I had a meeting at school this week to discuss my daughter’s educational provision going forward. I went into battle armed with advice from online forums and a very good friend, together with school policy printouts and a mask (because what’s the prospect of homeschooling without catching blooming covid as soon as I leave work?)

But in the end there was no war. The research, prior negotiations, medical diagnosis, and the long discussions with my daughter about what good looked like (thank you, work, for that phrase!) meant it was surprisingly painless.

I know the deputy head from my invigilator days, sitting through his safeguarding training year on year. He’s one of the good guys. In fact, despite everything we’ve been through in the last three years, we are actually one of the lucky ones. We have a school with both the capacity and the understanding to meet us as a point of compromise. 

When we chose the school (against my better judgment, because it was MY school, and who wants to inflict that on their kids?) it was very much because the Head made us believe that children came first. We haven’t always seen that in practice, but today I truly believed it, within the limitations of what they are able to do under government policy.

Only parents of SEND children or children who can’t be in school due to a long-term medical condition, will appreciate the immense relief I now feel to have a solid concrete plan in place for the next few months. Even if that does mean brushing up on 19th Century literature, the Black Death, Shakespeare and trigonometry. Google is going to have to cover RE and science!

After months and months of running on adrenaline, I am depleted. Covid has taken advantage and run riot, but if that’s the price, so be it.

I might not have chosen this life, this way. I still miss Work Me, and my work team. I hope to find some space to keep learning graphic design. But if this is the team I’m playing with now, if I need to be Coach rather than a star player, they will still get the best me I have to offer.

Is it the school holidays yet? 😉

I thought I was ready for what it meant to give up work to support my daughter, and for my own mental health. I knew that it was going to be a test of my patience. I knew it was going to potentially mean boredom. I knew I might struggle to be present. What I hadn’t appreciated was the gut wrenching loneliness I would feel, like a part of me has died.

I know it’s only been a week but I feel like I’ve slipped out of time. There’s a whole world going on, but mine has gone back to having preschoolers, only with much more complex situations, like secondary school head teachers, to negotiate.

I can’t even put it into words, which is rare for me.

I guess, when the children are younger, you’re in survival and less aware of the passing of time. Then, when they get to primary, there is the camaraderie of the school gate. But now the only people who could understand our situation are in worse situations themselves, and even if I did go online to those forums, I want to escape where we are not read more heartbreaking stories. I want to talk about Bake Off and weekend plans and what’s for dinner, or even the next marketing campaign. I want to laugh at silly jokes and eat banana bread with people that, after two years, have become like family, even though we worked remotely most of the time. I’m so used to chatting all day on Teams, it’s taking all my self restraint to not spam them on WhatsApp. I miss them, but they’re busy getting on with life.

And I am trying to do that too.

All those things you say you’ll do ‘when you have time’. Decorating and napping and painting Christmas cards with my daughter. Writing again. And I’m grateful that I can. I’m grateful not to be juggling work with a poorly child at home. But being ND hasn’t left me with many friends and the ones I have, funnily enough, have busy lives too.

Our School Academy has a Policy on supporting pupils with medical conditions that includes the line, “No parent/carer should have to give up working because the academy is failing to support their child’s medical needs.” I realise they mean more administering insulin rather than recovering from neurodivergent burnout, but it did emphasise how much our school system is failing children with mental health issues. Because how can an Academy, with its limited resources and government targets, support a child who can’t be in school? Unless we’re all home for a pandemic, of course.

Things will get better. When the days get a bit longer and we fall into a routine. I nearly didn’t share this post, because it sounds like complaining. But it isn’t. It’s just spreading awareness that, just maybe, that person leaving work isn’t celebrating their freedom as much as you might think.

It’s been four days since I said a sad farewell to my full-time job and went back to my other full-time job of stay at home parent.

My brain’s been racing like a pen full of puppies since I handed over my work laptop, wondering how it was going to keep itself occupied. Should I start another novel, decorate the bathroom, take a video-editing course, or investigate part time jobs to help pay the mortgage? All while traipsing around after the teenage daughter with a shopping basket and a credit card for retail therapy (in the true meaning of the word therapy).

Today was the first day without the children home, as they were both off poorly last week, and I did none of the things. I made a bunch of medical appointments, did three loads of laundry, changed some beds, put up the Christmas lights, and took a nap.

There’s a lot of sleep to catch up on. I haven’t been burning the candles at both ends so much as chucking them wholesale on the fire for the last few months.

And then, as I left for the afternoon school run, I got the text message that I’ve been waiting for and dreading. I’ve known it was coming since my daughter was about five years old. ‘Mum, can we talk about homeschooling?’

In the car on the way home, I could see we’d reached that point. I spent Sunday decorating the Christmas tree with my happy, funny, rude, outrageous, motivated teenage daughter. Sitting next to me in the car, after six hours at school, was a zombie. 

However, we’ve been in dialogue with school for years and so far not made much progress. We’ve managed to drop one subject, but it’s been made clear that there is no more room for manoeuvre, as the government believes the only place for a child to be is in school.

Honestly, I don’t disagree, if only school were a safe place. My daughter has ADHD. She needs distraction, she loves learning, and she likes to be around people. 

But school is just too much right now. 

Too much sensory input for her overwhelmed ND brain, too many arbitrary rules for her autistic mind, too unfair and too harsh for her endless empathy, and way too much expectation for her anxiety and RSD.

And now I know how I will keep my brain busy. I will be her advocate, just as my manager was for me at work, helping me negotiate and survive all those same things. I learned so much from them and wouldn’t have lasted a month in the role without them. Now I get to pay it forward.

I will try to become a warrior, an expert in educational policy and government rules. I will fight for support, and I will do what I need to do to ensure that my child thrives rather than survives her remaining teenage years.

And so this evening, I have been printing off statutory guidance and school policies and advice and researching where we go from here. I’ve chased up her EHCP and the next ASD assessment. I’ve reassured her I’ve got her back.

And the shiny new laptop I just bought so I can continue to learn graphic design and video editing? Well, I’m sure my teenage son will find a use for it.

It’s 7:15 am, and I have just been to Tesco’s to buy emergency supplies of ham, spicy crisps and white bread. This is not what Annabel Karmel told me feeding my children would look like. This is ARFID.

In case you haven’t heard of it. ARFID is an eating disorder that is often concurrent with autism, anxiety, and other sensory processing neurodivergence. It stands for Avoidant/restrictive food intake disorder and both my children have had it since birth.

I could see it in my son and I have been managing his for years. But when my daughter was diagnosed recently by a psychiatrist, at the age of 14, I admit I was shocked and mortified. Because she ate what would be considered ‘normal’ foods, or normal foods for a teenager: chicken nuggets, chips, fruit. It’s only looking back that I realise the sensory elements involved in her food, right from when she wouldn’t breastfeed and I thought I was a monster for putting her on formula. Formula which always tastes the same.

And now she is also battling depression, those sensory constraints have become much more obvious. At present, there are very few foods that she feels she can eat and if she can’t get the specific food that she knows she can manage, she just won’t eat. She is anaemic and keeps fainting.

One thing ARFID is not is fussy eating. So the doctor that told me her children ate ‘because she told them to’, when I went in tears of desperation with my malnourished son, was very lucky. I hope she never knows what it feels like to see her children sob in remorse because I have prepared something that they can no longer eat even though they are starving. 

Enter safe foods. 

The foods that always taste the same and have smell, sight, texture that is (nearly) always acceptable. There are very few safe foods and they’re usually expensive because they come in a packet. The ‘healthier’ the safe food (Bear Yoyos I’m looking at you) the pricier they are. My loyalty to Waitrose is not just the free coffee but the fact they stock the right flavour of Bear Yoyos and they’re often discounted.

And I’m grateful for teachers who make toast, for restaurants that happily serve chips and peas, and for whoever dictated that breakfast cereal and bread be fortified with iron. Have you ever tried to give iron to a child with sensory needs? Our fridge has three flavours of liquid iron, none that can be disguised in juice, and I’ve tried every chewy vitamin I can buy, because they can’t swallow tablets.

I will go upstairs later and find a half eaten ham sandwich, and be thankful. I’ll message the SEND hub at school and ask them to make toast. And then I’ll go to work.