It's fair to say that I've been struggling to find my blogging mojo over the last couple of months. Our 12 year old autistic daughter Sasha is now back out of school, unable to attend. She's not choosing not to go to school, and she's not refusing to go to school; she has communicated in several ways that she is currently unable to attend.
We found ourselves in a similar position this time two years ago; it took around nine months for Sasha to be given a place at a new school back then. We hoped that the new special school would be better suited to her than the mainstream school which she had begun to struggle in.
Some changes took place recently in this new school though, and they ultimately led to the environment not being right for her. At some point I will do a separate update about that, but for now those details are not important - this post is intended to demonstrate the 'can't, not won't' in a different way.
Since being out of school for the past few weeks, Sasha's mood has been very low. Until yesterday, there has been little I could do to engage with her; any suggestions for activities were rejected and she barely left her room. Then on Monday evening, her mood seemed to lift a little. She went out to dig in the garden briefly and she had remembered about a daytime trampolining session we had been to the last time she was out of school.
So we booked in for trampolining yesterday and the bouncing was a success. There was another girl there of a similar age to Sasha though, and that brought a new challenge. Sasha desperately wanted to talk to her, especially as the girl had brought some Pokemon toys with her, but Sasha whispered to me (loudly, because as she frequently tells me, she can't whisper) that she felt awkward and didn't know how to start the conversation. Not that unusual to how many teens would feel, with or without additional needs, but in this case I was well aware that any suggestion from me of what to do would be more likely to inflame the situation than help. Sasha is old enough now to want to feel in control of her interactions; the trouble is, she just can't. She can't moderate any of her feelings very easily and every reaction becomes extreme.
We left without Sasha speaking to the other girl (whose mum I knew, some similar difficulties on her side I believe) and Sasha was a little bit down again. That passed fairly quickly though and on the whole it was a positive day. The day before, I had seen a flash of the old Sasha as she came up with a plan to name different days of the week - Trampolining Tuesdays, Wandering Wednesdays to get her out of the house, Taste Test Thursdays and Family Fridays where we would stay in and do stuff together. That meant that for today she had decided to go and visit an old playground which we've had fun in a few times before.
When we drove to the playground and entered the small car park where we've always been able to park easily previously, we found it was full. We glanced over to the playground and could see that there was a new sandy area and some new equipment which had obviously been installed since we were last there a few months ago. The playground was also very busy, with lots of small pre-school children, and Sasha instantly became very tense. She worried that it would look odd, her going in when she was so much older than them, and I gently explained there wasn't any way of getting around that seeing as most children of her age would be in school during the day. We carried on driving to the back car park which is somewhere Sasha has never been, and she worried that it was too far to walk. By the time I had parked the car, a cloud had descended on Sasha and she started to hunch up in her seat.
She said very little, but it was clear that there was lots going through her mind and she wasn't able to leave the car. I briefly tried to reassure her that it would be OK, but anything I said started to make her angry and I knew it was pointless trying to reason with her. So I stayed quiet and she stayed hunched up in a tight little ball for around fifteen minutes. Which incidentally seems so much longer when you're not doing anything at all.
I didn't want to take the decision out of her hands so I thought I would see if the offer of her favourite reward (McDonalds chips, for anyone who has not been following my Facebook page....) if she was to be brave and enter the playground would work, but she shrugged this off angrily, still without saying anything.
We returned home and Sasha spent the rest of the day in her room, hiding under a duvet. Angry with me, upset with herself. The current situation with school means that it's even more difficult for her to recover from setbacks. I do hope we can help her learn how to deal with disappointment more easily but that's been an ongoing issue for many years and I suspect we will need some extremely good outside help with this.
It's a long story, but the 'can't help won't' analogy really jumped out at me today. There was a great article published a few years ago ('Can't Help Won't') and I'd urge you to read that if you have time. Sasha couldn't help the fact that she wouldn't get out of the car, despite knowing it was an activity which she had chosen to do, something which normally brings happiness, and a place where she used to feel comfortable. The change in the environment and the people in it were just too much for her to take. She wasn't trying to be awkward or oppositional by not getting out of the car; it really was just a step too far for her.
And so it is with school. She's not refusing school, she just can't go. I'm well aware that Sasha is not alone in feeling like this, and I try to share that knowledge with her. The best I can do for her is try to understand the conditions which are making it unbearable, empathise with how she is feeling and seek out solutions. Some parents of children with additional needs feel pressured by the system to make their children go into places which are just not right for them. My advice to anyone who is struggling in this kind of situation is to visit the website notfineinschool.org.uk where there are many resources which could help.
I highly recommend the Can't Not Won't book by Eliza Fricker - my review of it can be found by tapping the book image below:
For anyone new to this blog, here's a little summary of our life with autism so far: Our PDA Story week 35
For more information about PDA, please read the book shown below:
* 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?
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Sorry that Sasha is struggling. The terms like 'school refusal' don't really help there is too much focus on the child not being at school and not enough on how to change the environment or educational options.
ReplyDeleteYes, I think changing the language would help others to understand it better.
Delete'She's not refusing school, she just can't go'. Exactly. All fingers and toes crossed that there is some movement there for you both.
ReplyDeleteThank you. Jury is still out!
DeleteThanks for sharing. I enrolled my daughter in a private special needs school--that STILL didn't understand. So we're back to homeschooling. I like your idea of "Wandering Wednesdays" and all that! I think I'll try it.
ReplyDeleteWe have only found out about PDA this past February but my kids have refused school since kindergarten and oldest is going into grade 8 this september. Its so hard. I get he just can't go but I am worried at some point school will matter. We tried homeschooling and it was a nightmare for him but 9 year old is doing awesome with it. He is a happier himself kid now that he is at home. I loved it finally a stress free attempting to get to school year it was awesome. But he wanted to go back this year uggggg. I was so angry but he had mentally spiraled downward and I went with it. He missed 63 days before COVID and most days were half days especially at the beginning. I feel for you. It's so hard. Ironically they are happy to go on days they can manage no worries like they forget how it feels until the stress builds up again. sending hugs:)
ReplyDeleteI definitely feel like homeschooling would be a better option, if she was happy to learn at home and not see other children! Sadly that's not the case :(
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