Strikes

Last night I slept from 9.30 until 4.55. So did my husband. This is the first time in many years that I have had this much unbroken sleep (aside from a few nights away years ago, we cannot do this any more). This was because we had a night carer. She has the video and sound monitor, the heart rate monitor, and the bed seizure detection monitor with her. They were not on our bedside table. Our only disturbance was at 5.55am when the bell rang (we bought a wireless doorbell) which was the carer alerting us to a tonic clonic seizure. Normally we’d be frequently in and out of sleep, adrenaline rushing at every rustle or noise, even if it was just our daughter repositioning. The silence was so unusual to us, but blissful. It’s now 6.30am and I could not sleep any longer because my brain was busy thinking about something that’s been weighing on my mind for the last week.

Today there are school strikes, which I fully support, in mainstream settings. If I was not working, I would have taken my older daughter to the picket line to lend our support and educate my daughter on the importance of being able to speak up. Like many parents, I will be working from home today, with possibly the occasional, mildly amusing Zoom interruption from a child. It’s an inconvenience at worst, and one I am happy to accept to support the strikes.

That’s not the whole picture for families with disabled children, however. Taz’s special school has closed half of all classes. This means she cannot attend. Having a child with Taz’s disabilities not being able to access school is an entirely different matter. You see, her school is not a school alone. It is a place of care, and a place of essential respite for us. When this is taken away, families like ours are floored. Here’s what care we have in place today to enable us to get through the day (we are in the house with her all day, working from home, but she requires someone next to her at all times):

8.30 – 11.15 – we have used our respite budget to pay for a carer to look after Taz

11.15 -12.15 – I will look after her

12.15 – 13.15 – my husband will look after her

13.15 – 15.30 – my mum is travelling from 20 miles away to care for her

15.30 – 19.00 – our carer returns.

Why can’t we ‘just miss work’? Well, we both have brilliant teams and understanding employers, but between us, we have relied heavily on their goodwill over these past 6 months when our daughter has been hospitalised with seizures for a week on average every month. She has missed many weeks of school, and we have missed work to be at her bedside. Today she is well, but cannot go to school. It brings home the painful truth that, no matter how much people study and practice working with children with disabilities, they do not, and cannot be expected to understand, what is it like to be a parent of a child with a disability. If people understood this, special schools would be protected from strikes, in the same way that emergency care is in the NHS. When it comes to the NHS strikes, we all get that people need emergency care, so there has to be enough cover to provide this (a relief for us as frequent ambulance and emergency care users). But society does not understand that special schools are essential. They should not shut when other schools do, because they are schools in name only. They are vital places of care. No-one would dream of shutting a hospice (they stayed open during Covid, and in fact we were offered a place at one as our special school closed and we were at crisis point), but special schools fall under the category of ‘just’ schools, which they are not.

Many pupils at special schools miss huge swathes of school on a regular basis. This is not for a cold, or for the ‘dreaded’ 48 hour D&V absence. This is for regular invasive surgery, uncontrollable seizures, induced comas, stays on PICU with life-threatening infections, extreme anxiety. It is hard to describe the sadness, frustration and, frankly, rage, I feel when my daughter is well enough to go to school after missing many, many weeks, and then cannot attend, as her class is shut.

The staff in our special schools need to be represented by the strikes. They need better conditions, more support and more funding. That is undeniable. The whole structure of special education relies on these brilliant people. I do not however believe this needs to be done by taking away this essential service. I am happy to bear the inconvenience of strikes, as are many, but taking away a special school place is not an inconvenience. It has the potential to be devastating for families. Even more so if this continues.

The irony is that many children with SEN / EHCPs are prioritised for a school place during strikes, if they are in a mainstream setting. If you happen to have a child that is severely disabled enough that they cannot attend mainstream and require a special school (in which every child has an EHCP) they do not have a protected place. This needs looking at. The same happened during Covid; people were led to believe that children with EHCPs were at school. If they went to mainstream they were. But the majority of the most severely disabled children requiring specialist care, were not. For months and months. My husband and I both have PTSD markers from this time (which I suspect has something to do with the strength of emotion I feel around more special school access being denied).

As someone who fully supports striking, it was hard for me to write this post. But I feel I need to speak up for people who can’t, and for whom today is something overwhelming and scary, and not an inconvenience.

There’s a bit of a zeitgeist at the moment around being ‘seen’. For the most part, as a family with a severely disabled child, I feel that we are, but it is at times like this, and during the pandemic, where we feel utterly overlooked and invisible; forgotten about. We are lucky to have the resources to have been able to patch together today’s care, but many families with severely disabled children will be in crisis.

My very best wishes to all of the teachers striking today. You have my full support.