Mournful mermaid

Lily made it back from last night's excursion at a reasonable hour.  True to form there had been a text asking to come home later but I'd not seen it so I side stepped that one.

All the same, she didn't make it to school today.

I'm an architectural designer with my own practice designing extensions and refurbishments but business is slow just now.  I have one project on site, one just about to get planning permission and a few wallowing in the murky completion stage with a builder that has run into financial problems.  I work on my own.  My home office was taken over by Lucas last year when he was suddenly and unexpectedly sent home from his full time placement.  A few weeks turned into 8 months and I now rent a desk in an office in town.  I've always fitted by work round the family but just now I have even less of a routine than usual and responding to Lily's ebbs and flows is leaving me, well, at sea.

Lily drifted around the kitchen this morning, clearly not ready for school and husband and I made no comment.  The 'hands-off' approach had worked on Monday and the aim now is getting her on her way eventually, no matter how late.  Today it wasn't going to work, she reappeared after husband had left and said, "I don't know what to do." 

"Put your uniform on and go to school," I said, as neutrally as possible.

"But I can't."

Internally, I am screaming, "Oh right, you can go out and see your friends but you can't make it to school, and I want you to just GO so that I can have my day without fitting round you and just make an effort won't you!"

Also internally, a chorus of different voices are saying, "Poor Lily," "Autistic Burn Out," "She needs rest," "You don't understand." 

Externally, I say something about how this all looks and about how she is not right about automatically being able to do A-levels even if she doesn't do her GCSEs (which are 3 months away).  I have started to avoid the final 'summing up' statement in these situations (so get to school for example) since they act as the trigger to her next protest and insult and just prolong the useless exchange.  I knew she was looking for my permission to stay at home and I wasn't prepared to give it to her.  

Ten minutes later I knock on her door to tell her I am going out shortly.  She has a school shirt on and pyjama bottoms and is mournfully brushing her hair like a washed-up mermaid.  It's clear she is not going to make it out. So I change tack.  I tell her she is to do one page of art before I get back and to write a list of things that she remembers she used to do just because she liked them.  I ask her if she feels comfortable in her current state or if she thinks something needs to change.  Lily always sees where I'm going with this and is herself a master of the indirect question so of course she says, "I don't know." But I have the upper hand now and she is happy because I'm not pushing her out to school so I tell her that as an autistic person these kind of burn-outs are going to happen at different stages of her life and now is the time to work out how to get through them and what can make her better.  She warms to the subjects and starts to tell me about what makes her feel good in her room. She shows me some of the art she has already done and I remind her of her tasks before heading for the door. 

My aim is to be able to direct Lily towards actions and activities that she has identified as making her feel good.  I want to find out if she does anything we would identify as stimming.  Lucas has clear ticks and behaviours like banging, hand flapping, moaning and repetitive drawing which come out with different moods but I can't clearly spot anything like this with Lily.  I want to understand what she is masking and if that is what is making her so exhausted, how can she do less of it?  It's tough because she's already told the psychologist she doesn't know when she is happy or sad and she also says she can't remember anything of her earlier childhood.  Still, it's worth a try.

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