So we planned ahead, got the girls' Dad to book a day off work and decided we would have a family outing. Eldest daughter was keen to try the Natural History Museum but I knew that Sasha wouldn’t be a fan - a place she’s never been before, lots of animals and lots of people sounded like a recipe for disaster.
We compromised and decided to go to the Science Museum. Having been once fairly recently while Sasha was out of school, I knew she had enjoyed the interactive Wonderlab based at the top of the museum. I guessed that she would like to show her big sis around that. I knew that our plan for the day trip had to be watertight, and the usual strategies for leaving the house swung into action. This included discussion in advance of what the plan was; a tricky balance of presenting it as a done deal but with a way out if she really wasn't keen. No rushing Sasha, even though we had a train to catch - again, a tricky balance of making sure we leave with some time to spare, but not too much time as she can't bear waiting for anything, not even a train timetable!
We had to aim to get there as early as possible after doors opened at 10am and make our way upstairs as quickly as possible before it got too busy. Sasha struggles with queues and crowds; she doesn’t like it if other children come and interrupt her thought process or invade her personal space while she’s trying out an activity. We all knew that to have any chance of making it a success, we would need to follow Sasha's lead and let her lead the way to whatever she fancied doing once in the museum. We also knew that it was unlikely she would want to look around most of the rest of the museum; reading signs and looking at exhibits doesn't feature highly in her list of 'fun' things to do. So we had discussed the probability of me bringing Sasha home when she'd had enough and dad staying out longer with eldest who could then follow her own agenda.
So that's pretty much how the day went. Hardly any wait for the train which was good, but once on the train Sasha started to get a bit grumpy - travelling makes her anxious and a bit travel sick. As we arrived at the museum we were pleased to see we had timed it just right; doors had been opened and the short queue was moving inside at a steady pace. I had been prepared to ask if we could 'skip' the queue (hate that expression but sometimes for us it's the difference between a good or bad day) but as the queue was short and moving we just joined with everyone else - my first mistake. By the time we got to the entry desks Sasha had already been moaning loudly through gritted teeth about how the queue was too long.
We were in though, and headed up the stairs (Sasha is not a fan of lifts) to the Wonderlab area at the top. There was only a short queue there to pay for entry, but sadly it was a short queue which was moving at a snail's pace! So Sasha's frustration was building and we all began to feel on edge. Called forward just in the nick of time, we were then able to enter to see that it was still fairly quiet inside. There were several activities which nobody was on or using, so the girls had fun exploring together and I managed to grab some happy photos.
I was going to write here that as it got busier, Sasha's patience wore out.... but it would be stretching the truth to say she had any patience in the first place! After 20 minutes or so, Tamsin was still having fun and wanted to go on a slide (testing different types of friction!) but as Sasha didn't, she got very grumpy. I just about persuaded her to sit and wait for her sister, but only because Sasha then wanted the whole family to go and look at another part of the museum.
Sasha thrives so much on us all doing things together, she loves having a family outing, but she still struggles to cope with sensory issues and to be flexible/give up control enough to allow others to do what they want to do.
Sliding completed, we headed off into the main museum to go and check out the area where we had actually done a sleepover nearly three years before. I still can't quite believe I'm writing that; such a big 'expedition' feels completely unachievable these days. I always intended to blog about it, but time ran away from me as usual and it remained in my mind as a special, once-in-a-lifetime experience.
The SENsory sleepover went amazingly well; this one had been put on specially for autistic children and their families so was probably a smaller group than usual. The Science Musuem staff are so brilliant at working with anyone with additional needs; a lot of it is in the fun and exciting approach and their flexibility. They do run special sessions for autistic children on a regular basis - you can find out more at Early Birds.
On the night, Sasha struggled to take part in any of the special events which they had put on, preferring to just find her bed space on the floor and relax with her iPad, but oldest girl loved it and so it was well worth doing for us. I'd recommend it to anyone! Here's a couple of photos from back then:
We've asked Sasha if she would do this again, but despite it being a partial success at the time (i.e. she didn't ask to leave the sleepover in the middle of the night!), she is adamant she wouldn't repeat it.
Next holidays we'll plan a day out for eldest daughter with one of us, to wherever she wants to go. That's how we try and manage living with PDA here, we try and even it out in different ways.
Sometimes I think that others reading this might assume I'm moaning about not being able to have a perfect family day out. That's not the case; we did all enjoy our day yesterday, but I share the differences to try and help others understand that every family is having a different experience. Some may be having more challenges than others; it could be argued that the family with the screeching toddler were not having as much fun as we were.....!
I feel it's important to note and share the strategies which we use to enable us to leave the house, in the hope that they may help others who are still hoping for that perfect day but who haven't appreciated that the day needs to be different to pre-conceived ideas about what should work. These strategies are not needed for every autistic child; Pathological Demand Avoidance does bring extra challenges which are not always immediately obvious to others. Life can still be fun though!
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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