Travel with PDA

I'm not a fan of being down generally but I need to offload that it's been a difficult half term week here - travel was just one significant part of it. I'd planned nothing for the week ahead, as I felt both girls were exhausted after the first half of Autumn term. Eldest had started her new 'big' school and was happy but feeling slightly overwhelmed with it all, and youngest had put in a lot of effort to join in with her Year 5 class more of the time (see Writing Progress).

We received some terribly sad news just before the holidays started and it's been hard to get past that if I'm honest. The girls haven't been too affected by it, but for some reason Sasha found this whole week off school extremely hard, even though we didn't have much to do. It was an effort to persuade her to do anything, and we had one particularly tricky day where she was bored with what she loves doing - watching YouTube and playing electronic games. Every suggestion to do something else was met with a definite 'no' though. And the more I tried to suggest alternatives, the more irate she would get. It was a lose-lose situation.

As I felt the need to 'do' something with them outside of the house, I did agree to go to the Kidtropolis event in London on Tuesday. If you read my review of that (here) you'll see smiley pictures and what looks like the girls having lots of fun. Well, we did, and we didn't. The 'did' bits were fleeting at best. Of course that's the photos that I choose to take and show. As I think I've said before, pictures don't always tell the full story.

Selfies followed by Snapchat as we waited for the next train... waiting can be fun, for ooh, up to 5 minutes max...

We travelled on three trains (well two and the DLR, not sure if that counts as a train?!) to get to the event, and only managed to stay there for less than an hour. Tamsin would have liked to stay longer but was very good about being dragged away from it before we had barely done anything. Sensory issues would have made the event all too much for Sasha even on a good day, I suspect, but she also struggled with the transport getting there. 

Riding the DLR - in the best seat, phew!

Any form of travelling has become more and more difficult over the years. Car journeys of up to 15 minutes are tolerated but any longer than that and we have to seriously consider if they are worth the stress. As both sets of grandparents live some distance away, we are sadly never able to visit as much as we'd like to. Visiting other friends can be even more difficult as unless it's somewhere we've been before, there's added stress for Sasha of being in a new environment.

Sasha has only ever been physically sick in a car once; she actually coped with it quite well at the time but she has never forgotten, and the thought it might happen again obviously plays on her mind. It's not just that though, it's motion sickness, and it's clear to see how unhappy and stressed it makes her. She can never fall asleep (unlike Tamsin, who can barely stay awake in a car!) but she gets to a point where she holds her head in her hands then doubles herself up.

About an hour in to a 2 hour car journey on motorways...

About an hour and 5 minutes in to a two hour car journey...

Whether it's Pathological Demand Avoidance or autism which makes what Sasha experiences different to the travel sickness which Tamsin has had in the past, I don't know. I do know that the anxiety levels are extreme; there's no joking her out of it or just saying 'it'll be OK'. She wears the travel wristbands and we've tried soothing potions on wrists, but if you've read previous blog posts of mine, you'll know that she doesn't take any medicine or pills. I'm not totally convinced they'd help if she did to be honest. This extreme anxiety is part of her disability, not a choice she is making.

In the car, we have to have her choice of music CD. Not just on long journeys, but every day. This tends to be very repetitive, and she will often need to repeat a particular track over and over to satisfy her need to hear the words properly. If anybody dares to speak, it's as if we have broken her concentration, and the track will need to be played again in its entirety. If her anxiety reaches a peak, she will turn the music off.

This is control. This plays a huge part in our life with PDA. We sit quietly in the car, not able to chat, make observations or play games in the way typical families do. We don't do small talk. Occasionally we'll forget the quiet rule and make a comment, only to be screamed at. It's not worth it. There was a period of time when we could play 'I Spy', but Sasha had to dictate what we were looking for and whose turn it was etc. We can't even do that any more though. I miss those games. 

So anyhow this weekend we made one of those rare journeys that we knew was worth the effort; to meet up with very special friends. I sat in the back with Tamsin, as we are instructed to do for any trip of distance, and very uncomfortable it is too for an adult. Even more so when you have to share the space with a new family member. 

Just your average family travelling up the motorway...

Meet Frevin, everybody. So called because Tamsin named him Fred but Sasha wanted Kevin. One win from this week - a compromise was suggested by Sasha! Frevin he shall be forever known as. 

Lotus and Frevin. Best of mates.

Even the cat seems to have accepted him. Think we surprised a few people on the motorway though. 

See, I did my best to end on a good note. Happy Halloween everybody!

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