Wednesday, 25 September 2013

A colourful day out

This weekend we went to the Colourscape music festival. We had been before, but it was a couple of years ago, when Jessica was just two (and only just diagnosed). However, we all really enjoyed when we went previously, and we thought that Jessica would like it again and that her little sister would find it fun as well.

As part of the experience, you have to put on coloured capes which change shade as you walk through the different coloured domes, and there are musicians and other performers as you go around. While we were queuing outside to go in, we showed Jessica leaflets with photos of the Colourscape, and she became very excited. I can't think that she remembered going before, but maybe she understood that we were going to do something different and exciting.

As predicted, it was brilliant and very "sensory", with all the different colours and the music. Jessica's little sister just ran around laughing (she was on reins as it would have been very easy to lose her in there) and Jessica just loved it. Every time we came to a fork in the tunnel, we tried to let Jess chose which way we would go next -  she seemed to like the red tunnels best! When we got to the centre, there was a music performance going on, which Jessica loved, and also one of the musicians came over and performed a piece especially for her (buggies aren't allowed inside, so it was quite obvious that she was in a wheelchair). Jessica really connected with the musician, with lots of eye contact, smiles and laughter.
Jessica getting excited while waiting to go in


the tunnels that you walk through

Jessica's little sister

Jessica enjoying the music

And for a comparison, here are some pictures of when we went in 2011:

Sunday, 22 September 2013

All grown up

Jessica is now officially a schoolgirl!

She had her last day at her lovely nursery over the summer- well, actually she missed her last day as she was ill with an ear infection. However, we went in when she was better to say goodbye
to everyone. I (naively) assumed we would just say goodbye to the staff, but no. The Special Needs co-ordinator took Jessica into the nursery room to say goodbye to all the other children as well. They all sang their "goodbye song" that they sing when someone leaves, and then those that wanted to queued up to have a hug with Jessica. Nearly every child wanted to hug her, some several times! It was so sweet, and the end of an amazing experience for Jessica. There were a few tears (and not just from me!) as we bid farewell to these people who have come to mean so much to us over the last two years, and who have gone above over and above their job description to help us come to terms with, and cope with Jessica's diagnosis (and all that it entails). And, even more importantly, who have also fallen in love with Jessica and truly believe in her ability and potential.

And on to a new beginning, a new school, new staff, new therapists. Jessica has now done 2 weeks at school. In the first week, Jessica just went for a couple of hours in the morning, with me staying with her. The following week she stayed for lunch for the first two days, and then did three full days, including going to school and being bought home by school transport.

Jessica seems to be settling in well. She started by being relatively quiet, but clearly taking it all in, and is now beginning to come out of her shell a bit more. I really liked being able to stay with her for the first week, as it meant I got to know the staff and the routine, so I have some idea of what her day is like. I also got to meet her classmates, who are both amazing and adorable. It was also really good to see what kinds of activities the class do, and how the staff make the day enjoyable, educational and yet accessible for a group of children with such a wide range of abilities. Jessica seems to be getting used to the school bus - apparently she giggles the whole way there and back, and one of the older children cries when Jessica gets dropped home, as she loves sitting next to her on the bus!! It is also really beneficial to have all Jessica's therapists (Physio, OT, Speech and Language) in one place. I was watching them assess Jessica in the classroom and it just worked so well. They could discuss everything between them in one session, whereas before they would tend to see Jessica separately, and then email each other. So what was achieved in 30 minutes in school would have previously taken several weeks, lots of emails and some chasing up on my part!

One thing I am unsure about (and it is relatively minor in the scheme of things) is Jessica's uniform. The uniform is not compulsory, but having seen the amount of mess the kids get into (painting, sticking, cooking, gardening etc) I am reluctant to send Jessica to school in her "nice" clothes. But choosing her outfit every day is something that Jessica is very keen on, and I worry that by putting her in her uniform I am taking away one of the few areas of independence she has, and one of the few ways she has to express her personality. So we have compromised, and are trialling giving Jessica a choice of which hair-clip to wear instead. As you can see from the photo below, on this day she choose a purple sparkly one!! She looks so grown-up in her uniform!

Wednesday, 18 September 2013

Jessica's point of view

While we were away over the summer, we went out for lunch at a pub with an amazing view, next to a river. We choose it especially for Jessica, as she loves the water - either swimming in it, bathing in it, or just looking at it.

We arrived, and carefully positioned Jessica so she was facing the river, but not directly in the sun. However, she immediately started moaning and was clearly not very happy. Bemused, I went over to her and started to ask her what the matter was, and to say that we had come here especially for her, but as I knelt down next to her, I realised what the problem was. This was what she could see:

(I'm sorry this isn't rotated, I really need to learn how to do that!)
After we moved the cutlery out of the way, Jessica was very happy, and ate her lunch enjoying the view:

Lesson learned: always check what Jessica can actually see from her wheelchair!

Sunday, 15 September 2013

August 2013

Well, despite normally dreading the school holidays (no groups to go to, friends on holiday, nightmare to leave the house with both Jessica and her little sister and no other adult as both children need assistance to do EVERYTHING, including being carried/pushed), August has gone by in a flash.

Jessica has had a good summer, I think. We went to stay with both sets of grandparents (separately, they live at opposite ends of the UK!) as well as spending time at home in London.

In addition to going to see her favourite story performed at the theatre, Jessica also went to see the The Lion King in London (which she loved- lots of "old" ladies kept tapping me on the shoulder and saying how lovely it was that Jessica was enjoying it so much!) and she also went to a kids' show at the Edinburgh Festival.

We met Father Christmas at the Edinburgh Festival (he was doing a show there, obviously!) Jessica clearly recognised him, and was very excited to see him! We also went to lots of farms, parks, swimming pools and the beach (where she fell asleep!) There were lots of hugs and kisses, and numerous animals which Jessica loved - and she demonstrated the best hand function that I have seen from her in a long time when she wanted to stroke some of the animals.....