Friday, 6 September 2019

Not Back To School..... Not Fine In School.

So here’s my Back To School front door photo. I shared this a couple of days ago on my Facebook page and got a huge response from lots of families who are being let down by a system which doesn't work for every child.
Picture of an empty front door with no child posing for a picture; words say ' the reality of back to school for too many families being failed by the education system'
Picture of an empty front door, with no child posing for a picture; words say ' the reality of back to school for too many families being failed by the education system'
On Tuesday, our younger daughter didn't get to go back to school with all her peers. It's a long story, not one I can go into in great detail here. In a nutshell, Sasha could no longer cope at her mainstream school at the age of ten and after several months out of school (eight, I counted them) two years ago, she was eventually given a place in a special school. 

In our county, the special schools cover only S or MLD (severe/moderate Learning Disabilities). Because Sasha is on a par with her mainstream peers intellectually, we weren't sure how this special school would work out. There wasn't any other suitable option locally though; no autism specific specialist school and no school experienced in Pathological Demand Avoidance.

Sasha attended that school for a year and if we're honest, it wasn't exactly smooth sailing during that time. I haven't blogged much about her journey there, well, because. At Easter this year the school made a big change which Sasha was initially very excited about, but it turned out to be the beginning of the end. Since the middle of May, Sasha has been at home with no other input. Just me, it's pretty much always just me. 

Today we received a letter to inform us that a referral to a certain local service had been knocked back. We had hoped to find some help and support but sadly this wasn't to be. I can't begin to tell you how alone that makes me feel.

And yet, of course we are not alone. The comments on my Facebook post showed that; there are hundreds, thousands of families in a similar position, not able to find suitable educational provision for their children. With my post, I was thinking of all the other parents and carers with children who are not fine in school. The system does not work for every child. Not all children are getting the opportunities they should.

I realise that as a family we can be considered lucky. We have had some opportunities along the way, such as the chance of trying a special school, that others sadly haven’t. That’s partly why I write, when I have the energy to highlight the struggles that others face and to remind everyone to #choosekind and be sympathetic and supportive of others who may not be getting the same help or opportunities.

We have great support around us from family and friends, and, because I stumbled across the words Pathological Demand Avoidance on the Internet when Sasha was still young, I’m better equipped than some to stand strong and find a way forward for our daughter. That still doesn’t make any of this easy.

So I’m raising my mug of tea to all those who have children who are not getting the chance to go Back to School when they want to; all those for whom the current system doesn’t work. My advice to those parents and carers is to read and research what they can when they can, in order to help their children, but try to rest and recover your strength for periods in between. The battle may be long, but we have to keep hope that it’s worth it for the children and their futures.

There wasn’t a Back To School day for our daughter but that’s not to say it was all doom and gloom... on Tuesday we had a happy hour and some good exercise (yes, that’s the royal ‘we’. My exercise regime starts tomorrow, ahem) at the trampolining session for home educators today. I’m just glad that there is a teacher there with the right attitude, just the right amount of fun and a tiny amount of challenge so that Sasha doesn’t find the demands too much.
Sasha bouncing on a trampoline
Photo shows Sasha bouncing on a trampoline
Several people have asked me ‘why not home educate?’. Oh, if only it was that easy. My dear mum was a primary school teacher so I reckon she’s probably passed some of that ability on to me. So it’s not that I don’t think I could do it and I would have a good go, if Sasha would let me. But as I keep telling everyone who will listen, what Sasha really wants, is a school where she can have fun and make friends. She doesn’t want to do ‘boring’ academic work, and she definitely doesn’t want to do any tests or exams... not yet anyhow. I’ve no idea what her future will hold and I’m not worrying about that just yet, even if she sometimes is. Her worries are not around academic issues though; she’s convinced she can teach herself everything she needs to know. Mostly via YouTube. Am pretty sure she can talk American already.

All we need to do now, is to find some good people to develop Sasha’s potential. I’m drafting up a job advert tonight - "must be able to play Kirby and other Nintendo games to a high standard but understand they must never be better than Sasha, must be happy to listen to all there is to know about Pokemon and Steven Universe, must be able to inspire creative writing and imaginative art, preferably all around topics of Japan, Anime, Manga and Gacha." Anyone interested?! 
Stephs Two Girls posing for a back to school photo six years ago
Photo of my two girls six years ago when Sasha was about to start Junior School
The day after my 'door' post my timeline on Facebook was full of nothing but school uniform and doors with children in front of them. I've posted those in the past myself of course, nothing wrong with that, and I've loved seeing all my friends' children in these pics. My empty door was not to make anyone else feel bad for their full, smiley ones, but rather to highlight this major issue of so many children who are not happy to be returning to school, for whatever reason. Anxiety is usually created by an environment which is not right for the child, whether they have a diagnosis or not.

For anyone with a child who is struggling to attend school, I always recommend the Not Fine In School website, notfineinschool.org.uk. So many other families in a similar situation give great support and share advice over there.

The thought of my girl not having a school didn't really bother me at first but has hit me harder the rest of this week - possibly jogged by Sasha saying she was 'bored' for the first time today before 8am in the morning of our eldest daughter's second day back at school.

She's bored because she doesn't have a purpose, she's bored of watching YouTube and playing video games, but anything I do suggest as an activity is quickly and rudely rejected as not wanted. Sasha has always struggled to occupy herself; she hates books with a passion 95% of the time and doesn't have the staying power for any board games, even if we do allow her to play them by her rules (i.e. she has to win, and stay ahead the whole game, so there is no fear of losing).

If her Dad stays home with her for a day (which he has done on occasion, when necessary) then he feels no guilt about leaving her to her own devices. Yet when I'm home with her, I barely get anything else done apart from the odd bit of typing on my blog or Facebook (and mostly I'm struggling to turn that into longer posts) because I feel the immense pressure constantly; that I should be entertaining her, and educating her, developing her in some way, not leaving her alone. I do put a lot of effort into trying to engage her, trying to get her outside for fresh air, trying to get her to eat different foods so she isn't constantly hungry, attempting to coax her out of her low mood and stop the boredom. It is highly stressful.

I love her, I want what's best for her. I wish it was easier for her. School relieved the pressure for me, and when she was there I *think* it was good for her. She had other interactions and different outlooks, and I know that at times she had the 'fun' she so desperately craved. It all went wrong, the balance tipped, it was no longer fun enough. It hadn't really been fun enough from the start, but she had hung on in there.

Of course, when I talk about fun, I think many are quick to jump to the assumption that Sasha is no different to the many children who don't like school - 'who does like school?!' asked her trampoline teacher yesterday. Well, I liked school. Our eldest daughter likes school. I know, we are lucky. I also know there are many children who are not enjoying school for other reasons such as being bullied (fully behind the anti-bullying campaign being kick-started again this week). But there are currently far too many children with SEND (Special Educational Needs and Disabilities) who are not liking (understatement) school because it is simply not the right place for them.

'Fun', or lack of it, hides what the real issue is - and that's the lack of understanding of Sasha's type of autism which is Pathological Demand Avoidance. She wants to have friends, she wants to go to school, but she can't. She 'can't help won't'. The demands are too much. Learning needs to be approached in a different way.

I could go on... but I have to go and try my next round of engaging with my daughter. The pressure is always there.

To finish up, I thought I'd share this link to a page which shows all the blog posts I have written about #BackToSchool over the years. There's a theme running through them all... the school system doesn't suit my younger daughter. How many children are being failed in this way?





To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.


What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?




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13 comments:

  1. I wish I knew the answer. It’s so wrong that some areas have access to autism specific schools and others don’t. Having followed your journey for years what I will say is that you are an amazing mum going above and beyond for your daughter’s at all times.

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    1. Ah thank you, that is so kind of you to say so. I just try my best!

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  2. Wow. I am so glad I found you on Facebook. It’s crwxy reading this. This write-up is exactly what we are experiencing. And what you are going through as a mother is exactly what I feel to. Thank you so much for sharing, I don’t feel alone and confused so much. It all makes sense reading your posts. Children are being left out, left to rot I say!! It’s all so wrong!

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    1. It is wrong, so unfair, and the system is wrong. Hope the blog does help, although of course I wish others weren't in the position we are in :(

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  4. So sorry that you're having such challenges related to school. My son was in a special school for eight and a half years. We were fortunate to live in an area that had such a school. But even there it got more difficult year by year. People who haven't lived it can't really understand... it's hard to hear the criticisms from people like that, partly because it feeds on your own insecurities about whether you're doing the right things. But, Steph, you can't let that get you down (too much)... you're amazing! Hang in there!

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    1. Thanks Yuji! Am not beaten yet, we'll carry on regardless :)

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  5. This post will resonate with so many people... it is so well written and poignant. Your determination as a mum shines through xxx

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    1. Thank you. I may not have the right answers all the time but I'm pretty sure no-one else does, either ;) x

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  6. “talk American” - a useful skill! :-D I just heard the term “PDA” for the first time the other day and all of this is so strikingly familiar. My son just started 8th grade, and so far it has been such a struggle. We are lucky to have a supportive team in his mainstream school, but after the first six weeks I just don’t know how we’re going to get through the rest of the school year. I work full time (understatement) outside the home: online schools and homeschooling are not an option. Thank you for sharing this, I am hoping as I learn more about PDA maybe some useful strategies will emerge.

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    1. Wishing you loads of luck Gina - the first step to understanding a bit more is a big one and well worth doing x

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  7. It’s like reading about my child. The job advert description was spot on. One thing we’ve found that brings us together as a family is... and this is going to sound weird... the Channel 4 comedy series - Friday Night Dinner. We watch that and everyone is smiling.

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    1. I've heard of that but not got round to watching it yet! I'll give it a go... doubt Sasha will though!

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