Why being out of school is no holiday...

Yesterday, a comment popped into my Instagram direct message inbox, referring to the fact that I'd taken our younger daughter ice skating that day. The words were along the lines of 'You shouldn't have taken her skating during the day. You are just pandering to her. She's not at school, so she shouldn't be out having fun. You should be making her work at home during the time other children are in school.'

This person also went on to say that they understood about Pathological Demand Avoidance because they knew someone with PDA. This is probably the bit which astounded me the most, but I'm quickly moving on from that.

I'd like to tell you that I calmly deleted the message and haven't given it another moment's thought, but here I am, writing about it. I did delete it, in a burst of indignation (how dare they privately message me, to pass on their thoughts which are so clearly opposite to my own?!) but I almost wish I hadn't been so hasty, just so that I could reproduce the exact words (and mis-spelling) here now. I think I've got them almost spot on though.
So, here's my thoughts. 

Our younger daughter has been out of school, unable to attend, since May this year. The reasons for that are not straight forward; not something I can write about on this blog (although I touched on them in my post Not Back To School). They are, however, well documented in paperwork. It isn't a choice which Sasha has made, it was down to the environment and circumstance. In fact, Sasha still very much wants to be in school. She wants to be around other children her own age; being at home with just mum is 'boring'.

A quick bit of past history for the records; Sasha attended a mainstream primary school until the age of ten, end of Year 5 in the UK. Although academically bright, the demands of work coupled with the increasingly obvious social gap meant that Sasha was no longer able to attend and she spent several months out of school whilst a decision would made about what could happen next.

Her case was put to a provision panel and at a second appeal she was given a place at a local special school (not a fan of that term but it's one generally understood, I think). This was an MLD (Moderate Learning Disability) school, because there are no autism specific schools in our county. Although still aged just ten and officially in Year 6, Sasha began in April last year in a mixed Year 7-9 class. She was so excited and full of hope for the future that I wrote this post called New School Excitement and included a video. The year which followed was not a smooth ride, but Sasha did manage to attend this school most days, until a big change was made in May.

Since the middle of May Sasha has been at home, with me. Attempts were made (by me) to get her back into school that second half of the summer term, but other than a short visit to the sensory room it just wasn't possible. We tried some daytime activities for home educators; trampolining and gymnastics, and had some success but very limited.

We tried to relax over the summer holidays and mostly not think about school, although in August we did end up having to request a re-assessment of her EHCP to reflect the new situation. That process is ongoing.

When September came, it was clear that going back to the school she had been in was not an option for Sasha and so, a couple of weeks in to this autumn term, I took her on a day trip. I didn't blog or post about it at all on social media because at that stage I had thought myself that maybe it shouldn't look like we were having fun. It had crossed my mind that a) others might not understand the very big challenges still involved in that day of 'fun' and b) the information could be used against us.

Two months down the line and life has got to the stage where I don't think we should be hiding away, pretending we are staying home doing nothing. Some, if not all, of the places I've taken Sasha are places that she could not cope with at weekends or when other children are not in school, due to the crowds and overwhelming sensory issues which she has. We've probably made around four 'fun' outings over the past ten weeks - that's hardly living life to the extreme in my book. I'm trying so super hard to both give and get support for Sasha; when I'm not with her, I'm pretty much tied to this computer trying to research options, whilst emailing or calling by phone a variety of professionals, and also producing paperwork which is sadly a much needed part of this whole process.

The longer Sasha has been out of school, the lower Sasha's mood has been falling. She feels that she has failed at two schools and that she will never have friends, which is something she desperately wants. I've tried teaching her myself, but there are two barriers to that. First of all, I am mum, I am her carer, I am the person she trusts most in the world. I am not her teacher, she doesn't want me to be. Secondly, her Pathological Demand Avoidance means that she is living with extremely high anxiety levels, affecting her in all sorts of ways but mainly having the biggest impact on what she is able to do. It's not only demands I might try and place on her which are a problem, it is also demands which she places on herself.

So yes, there is a lot of ongoing demand avoidance. That stretches right from getting dressed in the morning and brushing teeth to attempting any sort of academic work or even leaving the house. Any day we make it outside and Sasha breathes fresh air, I heave a huge sigh of relief. Despite constant avoidance, I am always trying to think ahead and think of news ways to engage Sasha, new ways to enrich her life. Taking her out for a 'fun' activity is not an easy (or cheap) option.

The lovely person who sent me the message clearly believes that I am 'pandering' to her by not forcing her to dress, or brush her teeth, or eat a variety of foods, or go to school. All of those daily activities which many other children (such as our older daughter) WILL do, even if it's not always happily. There's a difference here; that difference is Sasha. The way her brain is wired, and the level her anxiety is at.

If I keep her in all day for the hours other children are at school and don't let her do 'fun' things, she'll just somehow 'give in' and be able to cope with the school situation which isn't suitable for her.... I think that's what this kind person was trying to tell me.

I liken this situation to those people who suggest that the way to deal with fussy eaters is by putting only the food you want to give them on the plate. Nothing else is allowed; eventually, when they are hungry enough, they will eat what you want them to. Funnily enough, we tried this with both our girls when they were younger. It worked for our eldest, but not so with our youngest. We have ten years' experience of trying the easy parenting options first; believe me, if typical methods worked, we would have stuck to them. Life would be a lot easier! Forcing Sasha, or sticking at something which she is not capable of doing, would break her. Not in a good way.

No-one else is picking up the slack in Sasha's education, it is all down to me. The times we are making it out of the house are not 'fun treats', as much as it may seem like that to those who are not living this life. They are learning experiences. A chance for Sasha to see and interact with other people. Exercise. A break for her mental health. Stuck at home, Sasha doesn't have the same opportunities that other children do to see results and experience success. There's no rewards or people outside of the family telling her she's done well and is making steps forward (I see them). There's also no Christmas concerts to take part in, no cards to exchange with friends or teachers and no extra little presents to receive. It's not fair, but then as you come to realise more and more the older you get, life is not fair. So we get on with it. Do the best we can.

In relation to the other issue highlighted at the start of my post, the direct attack in a personal way from somebody who doesn't agree with my actions, I consider myself lucky that in nearly ten years of blogging this has happened less than a handful of times. Lately I've seen more and more parents of SEND children being attacked for what they do and for the words they use. Those that attack somehow believe their view is the right one, the only one. 

There was a time three years ago when I posted 'To Blog or Not to Blog' seriously considering if blogging, or being on social media, was a good idea. It's all still very relevant now, but thankfully I am often reminded by lovely comments and helpful messages that there are many reasonable people out there in the social media world. Even today, I've seen the benefit of being online, with people jumping in quickly to help me with a technology issue.

I'm always open to being challenged and questioned in a polite way and I do understand how confusing this PDA life is to people who don't live it. But this is our life, this is what happens to us and how we deal with it. One of the main reasons I blog is to help Sasha by helping others understand her better. Understanding that this is not a choice; she herself would much rather be a typical child, attending that mainstream school and having the same teen squabbles and friendships that others her age get to have.

It's not pandering, it's panda-ing! Sorry, couldn't resist that as my final note. The PDA Society adopted a panda as their mascot because pandas are well-known to only thrive in very particular conditions. Remind you of anyone?!

For helpful approaches for children and adults with PDA (yes, they grow up to be adults with PDA too), please see my post on strategies or visit the PDA Society website.

Image by 995645 from Pixabay

For more information about PDA, please read the book shown below: 

'Understanding Pathological Demand Avoidance Syndrome in children' *

* this is an affiliate link and I may receive a small commission if you click and go on to buy anything. It won't cost you any extra.

(Other PDA books can be found in my 

'Books about the Pathological Demand Avoidance profile of autism' review post.)

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.

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?

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

To follow me on other social media channels, you can find me at the following links or click the icons below!

Facebook: www.facebook.com/stephstwogirls

Twitter: twitter.com/stephstwogirls

YouTube: www.youtube.com/c/stephcurtis

Instagram: www.instagram.com/stephstwogirls/