Sunday 13 November 2011

Back on the Rollercoaster

So. Another couple of weeks of ups and downs have passed. I'll try to summarise briefly, as right now I'm concentrating on my PMA (Positive Mental Attitude), and really I know no-one enjoys whingeing all the time - that's what we keep telling the girls, anyhow....
sasha sitting on a black horse
Half term started really well, with a planned but unusual trip out to a stables where they hold special riding days for children with autism and siblings. I knew Tamsin would enjoy the horse riding, having been whilst we were away on holiday, but I had no idea what Sasha would make of it. When I asked Sasha if she wanted to go, she was fairly non-committal so it could have gone either way. I think I was the most scared when we turned up to find the horses were actually fairly large! There was a little bit of waiting around and we nearly had to leave for home as Sasha was becoming disinterested, but fortunately we got chance to ride just in time and both girls loved it. My main worry was that Sasha was slipping sideways and didn't really have the strength or the sense to shift herself back centrally, but she stayed on.

The rest of half term was up and down - one day I attempted a trip to the supermarket but we only ended up making it to the local shop, as Sasha decided she wasn't going out. Cue a minor meltdown and me having to bundle her in the car with no shoes on, then carry her round the shop. Having the two girls at home is difficult, as they would both like my full attention on different things and I end up feeling guilty that I'm not balancing that, or giving either of them the real quality time. I had suggested Sasha might go back to her special nursery, Tracks, but she clearly told me that Tracks was for little girls, and she was a big school girl now! So that was nice, as it shows she has moved on, but it also sadly takes away the chance I had of spending any quality 'alone' time with Tamsin. 

For the weekend, I had booked us tickets for a family outing to see Disney on Ice at Wembley Arena. I booked them months ago, and was really looking forward to the whole trip out at the end of a quiet-ish week. I knew Tamsin would be thrilled, and Sasha would enjoy the train ride. Initially I had been concerned that Sasha's attention span wasn't long enough to sit still for something like that, so I was pleased when I managed to get front row seats, as I thought she would then be able to see everything and be amazed. 
disney on ice cars
Not quite. Sasha did try to enjoy it, but the extra loud PA system which was booming out the story and the songs non-stop was something I hadn't anticipated. I had taken a gadget along to occupy her if it didn't work out, thankfully, so after 10 minutes I put just the headphones from that on her and they seemed to help for another short while. By the time we got to nearly the middle of the first half though, Sasha was repeatedly asking to go home.  So I had to take her out. We found a nice security man who informed us you can hire ear defenders there, which hadn't occurred to me, so I handed over the deposit hoping they would work and Sasha was happy to go back in. 
sasha with light up toy and big grin
That lasted until the interval though, where she became fixated on the extortionately priced (don't ask!) twirly whirly light up toys. Tamsin melted my heart when she quickly said she didn't mind if Sasha had a toy and she didn't (not her usual stance, I might add!) so being able to buy one put a huge grin back on Sasha's face. But when the second half, and the noise, started up again, it was clear to see it was still too much for Sasha, even with the defenders, and she begged to leave. So I had to take her out once more and I sat on a wooden bench in the foyer for the next hour, whilst Tamsin enjoyed the show and Sasha played with her gadget. Ho hum. In some ways Sasha's sensory issues are becoming more apparent now; that is something I'll be following up at our paediatrician review next week. 

The following weekend also didn't quite go to plan - first a party for two boys from school which Sasha had been invited to. It's always particularly lovely to get invitations (Sasha has another three on the fridge!) as a big worry is how Sasha is 'different' and can't really make friends easily - she doesn't understand the concept of friendship fully. We're really lucky that Sasha is so confident and sociable, as it appears that for now at least, the other children seem to love her and take her under their wings. Long may that last.... 

Anyhow back to the party, which was sadly not a great one for Sasha. It was one entertainer lady with a very loud PA, who got all the children to sit on a mat for and hour and a quarter, all shouting things out while she did silly jokes and magic. All the children except Sasha sat and enjoyed it - we had to go and play outside the front door because it was just too noisy for Sasha and she was asking to go home! I kept hoping it would switch to more standard party games, but sadly they didn't come until after the food. As I was outside looking in, it struck me again how compliant all other children are, sitting still and following instructions for so long. No problem for Tamsin, but a big issue for Sasha. 
sasha dragging mum away by the hand
That evening was fireworks night, and we had tickets for a display in the local village. Looking back, I'm not sure why I ever thought that was a good idea, but Sasha seemed keen on the idea, even though it was a late start at 7pm. We left home all wrapped up with no issues, but the second we stepped foot inside the gate and onto the large field holding a fair few people (but not crowded), Sasha wanted to go home. She was scared of the big bonfire when they lit that, and wanted to sit inside right next to the DJ's speakers (loud!) rather than be outside. 

I tried to keep us there until the fireworks started, but she just got more and more upset and so we (Sasha and I - Daddy and Tamsin stayed to enjoy...again...!) left for home. I spent the next day feeling sorry for myself, and bemoaning the fact it's difficult for us to go to nice 'family' events and occasions such as that. Then it occurred to me how lucky we are, and how much more we get to do than lots of people, and how much more difficult our lives could be. Hence now the PMA. 

That doesn't mean I won't blog about the bad things any more I'm afraid - I've got a good one for next time about how we couldn't see Sasha get her first ever certificate in assembly - but I do want to be thankful for what we have and enjoy life. I'll be back to the random, inane blogging before you know it ...

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?

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?

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1 comment:

  1. I"m glad you're going out and doing things. We spend many a night in the hallway or on a bench while the rest of the family enjoyed a movie, outing, etc. Funny thing was, we had a good time, just in a different way.


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