Wednesday 10 October 2018

World Mental Health Day: the system affecting SEND families

A year ago, I wrote a post for World Mental Health day which was titled 'Playing The Game'. At that point, our autistic daughter had been out of school for over three months. The mainstream school setting was no longer the right place for her and it became unmanageable towards the end of Year 5 for a variety of reasons. She should have moved into Year 6 with her peers but the pressure of knowing that she was different from them, combined with the increased pressure of the academic workload and daily demands which she found difficult to cope with (due to her extreme anxiety and Pathological Demand Avoidance), meant that we needed to find an alternative.
view of girl's back, wandering through trees
The same photo I used in my mental health post a year ago; always makes me think of the different paths to take. How do we decide?
If only it were that easy. We talked and found what we decided to be the best option at that time, known locally as a 'special school' (a term which now brings negative connotations, along with 'special needs'). Sasha was excited about the thought of attending this school and feeling like she could fit in with children who were 'more like me'.

We went through an arduous process to try to 'win' a space at the school; this consisted of meetings and reports and emails. Luckily we had some great professionals involved who understood Sasha and who could see why mainstream was no longer working. Despite professional opinion being presented, our request for the special school was turned down at the first 'panel' (a process where faceless people make a decision about what is right for a child they've never met, based on paperwork alone) and it was at that point that I wrote last year's post. I can still remember the white hot rage as I was told the news that they wouldn't consider her.

Time moved on, as it always does, and following an appeal and paperwork presented to a different panel, a place at the school was awarded. Except then we learnt that the school were arguing that decision. Great start, way to feel wanted, huh? Of course, nothing is ever that simple. I do consider myself to be a 'reasonable' parent, and I can see that hands are tied by the systems - those systems which are supposedly meant to enable our children to develop and flourish and be taught all equally.

Fast forward to today, and Sasha has been attending the school (on and off) since Easter. The irony that she is not at school today, on World Mental Health Day, because she couldn't face it, is not lost on me. Regular readers of my Facebook page will know that there have been some tricky times on and off ever since she started at this school. For any child with Pathological Demand Avoidance, school is one huge demand in itself (the system, and all the demands contained within it). It's a wonder she goes to school at all. Flashback here to when Sasha first started nursery... I was so amazed that she ever agreed to wear a uniform (my surprise was down to sensory issues and the fact I knew she'd rather have been wearing nothing all day long), and so amazed that she would at times join in with activities and learning. She's always done it because she wanted to; she just hasn't been able to cope with all of it in the same way that the majority of children appear to manage.
Sasha aged 3, in nursery uniform
One of the very few photos we have of Sasha in her nursery uniform. Cute, but not exactly happy....
That's our Pathological Demand Avoidance in a nutshell though; it's not all about routine and schedules as it appears to be for many autistic people. It's about demands, and levels of overall demands, and what causes the most anxiety. Our society is built on typical parenting and telling our children what to do, and it comes as a total shock when you realise that doesn't work for some children. Especially when you have an older child for whom it does. I can understand how the ability to comply with some demands is misleading and makes others think that anything should be possible, but therein lies the biggest problem, and the biggest strain on mental health.

The system is very inflexible. Rules and regulations for the masses, rather than understanding and accommodations for the individuals. Trying to fit into a system which is not suitable is bound to have adverse effects. Being that square peg which others are trying to push into a round hole has got to hurt; the effects on mental health can often go unseen. Until it's too late.

Today, a short exchange of words at home, not angry ones, just ones trying to help our younger daughter understand my point of view over something, led to a small meltdown. She then cried that she doesn't deserve her Peperami (snack of choice), and she doesn't deserve to live. 'Why don't you go get an axe and just kill me?' are the exact words which have just come out of her mouth. I've heard similar phrases from her before, but of course many parents will say they've heard worse. At what point is it a worry? When do you call on outside help?

I've had comments before now asking why I don't 'just' home educate Sasha, pull her out of the school system. Of course, this thought has crossed my mind lots of times; in fact it's permanently wedged at the back of it. I'm being led by Sasha for now; for as long as she says she wants to be in a school, I'm trying to enable that to happen. It's hanging in the balance at the moment; she wants to be there but is beginning to articulate why it's not a great place for her. She's aware that the learning levels are below what she is capable of, and finds that slow going, but at the same time she doesn't want to be forced to work. In her words, school is 'all about the social'; she craves the idea of high school and hanging out with friends which she sees her older sister do. She's now realised that she doesn't fit in this place any more than she did in the mainstream though.

What toll is all this having on her mental health? The thoughts that she is so different, she is not 'fitting in' anywhere. That's my main concern, and the biggest driver for me. That I somehow need to protect her mental health. No-one else is guiding me on this, I have to try and figure it out myself. No professional services are involved with our daughter currently, and even if they were I'm not sure how quickly they could unpick the last eight years of how we have been living and figure out the answer.

Almost as important though, is the mental health of the parents who have to care for their children and navigate their way through this impossible system. So many are pushed past their breaking point thanks to the lack of support. Not only that, but in many cases accusations that they are not doing the best for their child. Guilt is piled on top of pre-existing parental guilt until it becomes unmanageable and a breakdown occurs. Parents of children with SEND (Special Educational Needs and Disabilities) meed extra support, but rarely get it until it's too late. Medication is then seen as the answer, when in truth support earlier on may have avoided the need for medication at all. It feels like the system is so short-sighted, and only has the needs of the system, rather than the individual, at heart. Isn't it about time we looked at changing the system?

Thankfully, there are organisations doing great work on mental health and offering support. I recommend; they have some great tips for everyday living with mental health. In terms of autism, they ran a two year project which showed that 'that people with Autistic Spectrum Disorders (ASD) are particularly vulnerable to developing mental health problems. We also found out that existing services tend to treat people either for their ASD or for their mental health problems, failing to recognise the complex dynamic between the two.'.You can find out more on their page about autism, or on the National Autistic Society webpage. There are some great blogs looking at autism and mental health on the Young Minds website. I don't have all the answers, I wish I did, but at least if we try and share resources some more people may be helped.

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?

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?

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  1. Youmare a wimderful mum. I read your posts and I am in awe of how you manage day in and day out while the system seems to destroy all your hard work with your daughter. The system may not seem to care but I very much do! I am always here for you anytime x

  2. It surprises me how even schools for SEND kids don’t seem too keen to make adjustments for individual needs. Well, I’m sure they do in some respects, but not in many other. I looked at info from a school which I thought might be of interest for us (this was almost 2 years ago now, but I doubt much has changed), which was supposedly specialised on autism. There online prospectus seemed to be more about uniform regulations, policies about attendance or being late, the responsibilities of the parents & children etc, than about what the school did to meet the children’s educational needs.
    We would need a school which doesn’t demand (uncomfortable) uniforms, doesn’t mind if we’re late, and doesn’t mind more days off than most kids. I’m not sure that school even exist?
    My heart breaks for Sasha, reading how she doesn’t feel she fits in anywhere and that she doesn’t even feel worthy of being alive. Such a difficult situation, for all of you. I’ve got no real advice... just, hugs x
    (Oh, also, what you said about ‘overall level of demands’ is such an important point, and although probably more significant in PDA, I think it applies to many with other variants of autism too, and plays a big part in why something can be perfectly doable one day but impossible on another.)

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