Is this the hard bit?
My son is currently not attending school. Following the initial relief of not having to try and get him in, I'm wondering if 'now' might actually be the hard bit...
Six weeks ago, I stopped trying to get our son into school every morning.
There had been tears, panic attacks, loss of appetite, loss of sleep. It was taking me two or three hours to settle him each night.
I said that if it was all too much for him, I wasn’t going to continue trying to get him into school.
I’d spent some months feeling hopeful that this new school - his third (mainstream, state) - would be better.
At first, it was.
He was put in a class with his cousin. His class teacher was very supportive. The TA, too. And the head teacher. The kids were kind and welcomed him, warmly.
Adjustments were made, when it started to feel hard. Late starts. Half days. Quarter days. Rest days.
But then the same things that had made it unbearable in the last two schools became unbearable again: too many people, too loud, overwhelming.
(He’s autistic.)
He couldn’t focus on the work, because of the noise and general feeling of overwhelm. And he couldn’t focus on the social side, either.
Soon, there was nothing making school feel fun.
The occasional day off became regular days off and regular days off became six weeks off.
And here we are, about to head into the ‘summer holidays’ (I have a 10 and four-year-old still attending school) not knowing what September will look like.
We have an approved EHC plan that has just been finalised and yet it’s so closely linked to him being in school that it’s of no use at all right now.
I’ve emailed - again, and again - asking for support with out-of-school provisions, while we work out if he will be returning to school.
Today, I received the response: we’ve now finalised the EHC plan so you’ll need to email … [the next person]. The next person who will ignore my emails.
I’ve found a beautiful setting where we can take my son two days a week. Forest school, low-pressure learning, wonderful teachers, a tiny group of kids.
It will cost £50/day. So £400/month.
There’s a lovely tutor, too, who can help him with maths. Numbers are his thing along with art. I want to help him build confidence by focusing on his strengths.
That will cost £45/week. So, £180 a month.
And there are two therapies I’d like to try. That’s another £100/week; £400/month.
It’s getting expensive, isn’t it? That’s £980 a month, so far.
Many mothers I know, in a similar situation, have given up their careers to look after their child full-time. How, then, do we fund this type of education?
We are not homeschooling by choice, we are homeschooling because right now, this is the only way we can educate our son.
We looked at a specialist school - the best one, apparently - and we hated it.
It smelt like school canteens. It was noisy. The classrooms were tiny. The kids looked unhappy.
There are parents remortgaging their homes to take the local authority to tribunal to fight for them to fund their child’s place at schools like this.
How can this be happening?
I’d love for the same state school that my other two children are pretty happy to go to each day to work for my son, too.
Maybe, in time, he’ll be able to return.
At first, I wasn’t concerned about whether he would or not. I just wanted to help him recover from autistic burnout and school-related trauma.
Now that we’re some weeks in, I find new thoughts popping into my head.
I have a secret hope that he will want to return, in time.
For him, but also for me. I need to work. There isn’t the option to give up my career - financially, and for my mental health.
When I hear stories about children who are in autistic burnout and are off school for a year then decide they want to return, I feel my stomach flip with excitement.
Might that be my son?
But then I hear that 75% of neurodivergent kids who have time away from school because they can’t cope in that environment don’t return.
And I realise there’s a higher chance that that won’t be what happens.
My son is a cool kid. He’s funny, he does magic tricks, he makes amazing art (like, really amazing). I love his questions. He is tender, kind, caring.
I love spending time with him but what I love even more is seeing that he has everything he needs in life, and that includes friendships and play.
So, priority number 1 is: try the new outdoors setting to see if we can encourage friendships and play.
It might be temporary. It might boost his confidence. It might remind him of his brilliance. It might make him realise he wants to return to school.
It might do the opposite.
I thought the initial diagnosis was the hard bit. I knew there’d be lots of research required to understand autism and neurodivergence.
But I did - and I’m doing - the research. I’m fascinated. I’m obsessed. I read and read and read. That part no longer feels hard.
Once I’d done some learning, I thought that actually, getting him into school was the hardest bit. The pain of seeing your child in pain.
Now, I wonder if this limbo stage is actually hardest. For him, and for us. Because none of us know what the future looks like, and that can feel incredibly unsettling.
But we are seeing that we can move through difficult stages and come out feeling enlightened and lifted and even more hopeful.
And we are here for him. Whatever he needs, we will make happen.
Though I’m not forgetting myself in all this and I’m encouraging other parents - especially mothers, who do the majority of the caring - to do the same.
We’re holding a lot.
We need to be held, too.
That’s why I started this Substack.
Annie x
So pleased you’ve started this Substack x we are reaching the end of a term where we have flexi schooled. We don’t have our ehcp yet and unsure what the future looks like too. But the calmness that has come back to our lives is giving us a tiny bit of space we need to think about it all.
We love a forest school setting here too - if only this was something more universally recognised and invested in x
We've spent nearly £3k since Feb funding alternative provision to our autistic 9 year old who crashed out of school at the end of last year. I'm not sure how long we can continue. I have tried and tried to get the LA to do its duty of care and provide an alternative provision - I'll keep trying until we get what we are entitled to, but what a ride - raising neurodivergence is another job in the current system, a job in addition to your actual job you are trying to do (whilst your child is at home) to fund all the things they need as you have zero support. All the feels thanks for sharing Annie. Raising awareness around our experiences is key.