Not Fine In School. Week 2

Time for Week 2 of my new 'Not Fine In School' series. The idea of this series is to share real experiences of school and education from those families who have found the whole system far from 'fine' or even 'fit for purpose'.

There are too many children experiencing distress within our current education system. Some families are told that their children are 'fine' once they are in school, but the families experience behaviour and emotions both before and after school which would indicate that the 'fine' is simply the child's way of masking, of trying to fly under the radar.

Then of course there are many other families whose children do not present as fine in school. Many children, in fact, who cannot make it to school at all. Lots of parents and carers will have experienced the build up of stress on a Sunday in advance of trying to encourage their children back to school on a Monday. Lots of parents and carers who are called back to school after a short period because their child is not conforming or coping.

I think, on the whole, people do understand that children who are stressed or distressed for any reason are unlikely to be in a position to learn well. We, both parents and educators, need to act as detectives to begin to figure out what is causing the stress and anxiety. Is it the environment, the staff, the other pupils, the topics or subject matter? So many variables, and a system that is attempting to be a 'one size fits all'.

This series is a chance to highlight what is going wrong; how the education system is not simply leaving children behind, but actually chewing them up, spitting them out and then attempting to forget about them. Some parents spend years battling with the system, trying to get what is right for their child, and others are battled by the system, drained of all energy and left wanting to turn their backs on it completely.

My blog has focused on a particular profile of autism known as Pathological Demand Avoidance over the years but let's be clear, the 'not fine in school' issue is not restricted to PDAers and their families. However, according to the PDA Society's Being Misunderstood survey in 2018, it was found that children with a PDA profile of autism seem to find it especially hard to thrive in school, with 70% unable or regularly struggling to attend. As is the case with our daughter, this is often not because they don't want to go but because the environment is not catering for them. And the same is true of many other families, PDA or not.

This week's post is written by a mum who felt she had no choice but to deregister her daughter. I know she is not alone in feeling that way because I've spoken with many families who have felt the same. Her words are very powerful and if you'd like to read more, please do visit her Instagram page Blossom (@blossoming_autism).

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I first began to suspect my daughter was autistic when she was about three years old. She was seriously struggling to take that initial step into a preschool environment and was anxious and tearful. I fought long and hard to get her a referral for an ASD assessment but was refused time and again. Eventually, she was diagnosed age 10. I applied for and was successful securing her an EHCP in 2020 and after multiple rebuffs CAMHS accepted her referral, although to date have yet to speak to or meet her.

We have been incredibly lucky with the primary school she was at. They supported her as best they could, accommodating her needs as far as possible and being flexible with her school attendance. Even so, she found the whole experience overwhelming and ultimately it impacted on her life in significantly negative ways.

Just 48 hours into Year 7 our home education journey began, not unexpectedly!

“Keep pushing her until she has a breakdown. We need to see it happen.”

Those are the words our SEN caseworker said to me when I told her my daughter's secondary school placement was unsuitable.

I am sharing this because I want, DESPERATELY WANT, people to understand what is going on behind the scenes for children with special needs and disabilities.

Quite a few people have asked me since deregistering my daughter from school if I was forced into home education. It wasn’t a question I’d anticipated and I’ve thought a lot about it since. How do I answer?

No one held a gun to my head if that is what you’re asking me.

But do I feel that ultimately a system, both medical and educational, not fit for purpose, backed me into a corner? Absolutely I bloody well do.

Denied a special school placement, the advice I got was to sit back and watch her mental and physical health deteriorate to a point where the trauma overwhelmed her.

No. I’m not having that.

And the response I have had from the school? A letter to tell me I am seriously impeding her future prospects. Full of veiled threats and ignorant assumptions. I’d laugh at the irony of their opening statement about being committed to children’s education but the whole thing is too sad for words.

An entire system geared up to break my child. That letter was the final nail in the coffin. Void of any compassion or recognition that learning can look different for different people. No ‘good luck on your future endeavours’ or ‘wishing you all the best’. Just them flicking me the finger for having the initiative to say enough is enough.

Nothing has made me want to fight the system more than this experience. Which is exactly what I’m going to do. Because we are the lucky ones. I am able to provide my daughter a full-time education which will exceed anything she would be able to access in a mainstream setting. I am committed to watching her achieve her absolute potential. I am excited about her future and for the first time, so is she.

But here’s my question: what about the kids who don’t have that?

In the short (record breakingly short) amount of time my daughter was at mainstream secondary school, I was told she would be removed from music, art and language in order to focus on her maths and English.

As many of you know, I was already hesitant about this placement but this was a massive warning sign for me that something wasn’t right.

And something really isn’t right.

Just because my daughter has learning difficulties, just because she has an invisible disability, it doesn’t mean she isn’t fully capable of enjoying art, music and languages.

I’ve sneakily hung about in their social media parents group, reading what experiences they’re all having. And I’ll be honest, it seems to be quite a standard and well accepted approach.

Don’t get me wrong, I understand the importance of maths and English. But are we living in a society so driven by achievement and expectations that we’ve lost all sight that these are children? With the capacity to enjoy a rich and varied life? They are children that will grow into adults who didn’t get the opportunities they deserved because quite frankly, the system is nadged.

Shoe horned into blazers in 30 degree heat with no option to wear shorts, we’re told they are being prepared for the work place? What kind of world are we creating here?

Yesterday I watched her at the park. Enjoying the beautiful autumnal sun, she made a new home educated friend. They played for hours, took turns on the equipment, ran about, sat and talked and as I watched them it really brought into focus what some children are missing out on in this system.

I truly believe that all children have a right to education. But I think this target driven society has made us forget what that really looks like. The education system was never meant to be a survival operation! It’s meant to be a nurturing, encouraging, educational, joyful and fulfilling experience.

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Thank you for reading. Over the coming weeks there will be more examples of families being failed by the system. They won't all be the same as this one but they will all share common themes. It's important to remember that most of those families caught up in the system currently will not have the time or energy to be able to write about their experiences just now, so these will be only a very small representation of what is going on out there in the arena of education.

If you feel up to sharing your 'not fine in school' experiences please email me at stephstwogirls@gmail.com. I understand how difficult it can be for families to talk about this topic - for some there will be a need to stay anonymous, which is totally fine. But this issue of the outdated, failing system is huge and should not be brushed under the carpet any more.

For any parents and carers needing help right now, I highly recommend the incredibly helpful Not Fine In School website (notfineinschool.co.uk). There are many supporters behind the scenes and in the linked Facebook group who have been through difficult times during the school years. Plenty of knowledge is being shared which could make a real difference to other families. If the system is not fit for purpose we need to shout that out loud. Please help, by sharing your story or sharing this post to get the message out there.

For those who are keen to help make a difference, I also suggest getting on board with Square Peg. They are making great strides in terms of raising awareness across different media formats and also with legal challenges around attendance policies.

For the other weeks in this series please click the links below:

Week 1 of Not Fine In School

Week 3 of Not Fine In School

Week 4 of Not Fine In School

For more information about PDA, please read any of the books in my post

Books about the Pathological Demand Avoidance (PDA) profile of autism

Stack of book spines, all books about PDA listed in the post link given

To find out more about our experiences, please check out our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.