Sunday, April 25, 2010

Broadening our horizons

Do you like the new blog title? When I started this blog, our lives revolved around William and it quickly became a blog centred around life in hospital and sharing the daily news about his illness and fight back to life after transplant. I have talked a lot about the journey I, Hope and Ellie have been on with him but life is about so much more now.

It's very easy to get stuck in a rut when you have a child with any kind of additional need. Life can be exhausting and, with autism of Asperger Syndrome, it can seem easier at times to just let the child get on with their routines. This isn't good for anyone and this spring, our first home together and with Wills out of the isolation he was this time last year during the early days of his transplant recovery, I am determined to get us all out doing new things and meeting new people. We all need to broaden our horizons - hence the new blog title!

William's spiky ball

With William, you just have to get on with things, support his anxieties but throw him in the deep end because, with the right care and help to feel safe, he'll enjoy himself in the end. I did that literally on Friday and took the children swimming for the first time ever together. Wills swims at school but had never been in a busy public session before. It won't be long before he goes again. He's a natural water baby. Once he knew his arm bands would hold him up he was determined to move about independently and even had his face in blowing bubbles. It was so lovely to be doing something together that so many families take for granted. With the Swim4Life programme, the children can swim for free and pool membership is free for me on tax credits. All this means, we can enjoy the pool for just over £1 for the family. We'll be doing our best to go once a week.

On Saturday, we joined in with the first session of a new local arts project 'Life In London.' This will comprise off seven sessions over the summer, with activities to do together in between. The resulting work will be exhibited in Croydon. There is a project blog here so do go and have a look. Over the coming days, there will be some photos of us all taking part in drawing activities and a montage of images we took in a photo treasure hunt. There is plenty of space for more families to take part so, if you're in Croydon, do join in the fun. We'd love to meet you.

I knew William would find it difficult to settle and participate in the group. Group work at school is something he finds very challenging and he will often play at being asleep or stay silent when he's asked to talk to a group. He was especially upset because getting the tram into Croydon means shopping, not walking up to the Clock Tower to do art. This was a big change in routine, something he finds difficult. As I predicted, Wills wouldn't join in the hellos and staying on my knee, burying his face in my chest. He eventually began to peer towards the group more and more so I encouraged him to sit on his own chair. Hope had decided to play 'just a minute' so I suggested Wills spent a minute telling us all about Thomas and Friends. That did the trick. The minute Wills had held court with the group and entertained them by getting all the engine's numbers wrong on purpose, we were off! William joined in with some lovely art activities doing doodle patterns. I was really surprised. It was lovely seeing him do something completely different and being so relaxed and happy doing it. I got a fascinating insight into how he perceives things during the next activity. We had to feel in a bag and draw what we felt. The bag had smooth, bumpy and spiky balls and, while we all tried to draw what the object we felt must have looked like, Wills recorded what he felt. The picture above is a spiky ball. The one below is a smooth ball. I find it fascinating to see what he's done. It is bringing the developmental and cognitive psychology I studied and taught out from dormancy and getting me thinking.
William's smooth ball (no help was given at all)

William was really entertaining and, often, insightful. I feel more and more that the Asperger's syndrome is not a disorder. It's just different and deserves to be understood and embraced by others. Hope and Ellie did some fantastic drawings throughout the day and we all felt inspired to carry on exploring art together. We will certainly be doing all the activities asked of us between sessions. We want it to be a spring board into new activities we can join in together regularly.

We rushed off from the session to the church one of Hope's friends goes to. Her Mum leads a lovely monthly event called 'cafe worship' where people share tea, sing choruses, pray and listen to speakers. This month, Hope and I were invited along to talk about Wills and organ donation. Hope has been asking her friends to invite her to youth groups, churches and any other suitable event and is doing a big assembly in school on Friday. She is quite the campaigner these days. Hope did really well, I was so proud of her. Wills was good all the way through and Ellie coped very well hearing us relate what was a very difficult time for her too.

From cafe worship, we rushed home to do some filming. I'll tell you more about that later in the week but, once again, my children were super stars. Wills coped really well with disruption to his routines and enjoyed having more people around to entertain. Having settled Wills to bed, the girls and I were chilling with Britain's Got Talent when the door bell rang. It was the guy who had filmed us. I asked what he'd forgotten and he said, nothing, something was bugging him. He knew that he knew me. I thought he looked familiar but was astounded when he said that I'd been one of his lecturers when he was a student at Bath. That's the first time I've ever run into anyone I've taught. What a small world!! It was even smaller yesterday as one of the girls who organised it grew up just up the road and another was someone I met at Downing Street at the Downing Tweet party.

We were meant to be going to London today to cheer on those running for the fantastic Starlight Foundation and, much as I really wanted to, Wills needed down time today. He was fantastic yesterday but you need to be realistic pacing children like him. Not only does he get physically tired but he gets very emotionally tired. We all broadened our horizons yesterday and Wills especially. Today, he needed time to relax playing with his engines and watching his CBEEBIES programmes. I was pleased when he came to me to play some drawing games based on yesterday. He did hold what he learned. Days like that will open his mind and stretch him but they are stressful for him too and I need to remember that.


Kiz said...

Love reading ur blog as ever ! Sounds like you guys all had a fantastic day, and its lovely to hear about wils being a water baby ! Ul have to get a waterproof cam and get a few snaps of him splashing around, those are definatly memories that need saving :-D

Hope ur all well :-D

Kiz said...

Love reading ur blog as ever ! Sounds like you guys all had a fantastic day, and its lovely to hear about wils being a water baby ! Ul have to get a waterproof cam and get a few snaps of him splashing around, those are definatly memories that need saving :-D

Hope ur all well :-D

Helegant said...

I like the new title. It sounds full of hope :-)

loulou said...

This is great Sarah and I look forward to reading more about the new chapters that unfold for you and the family. Great title and it is kind of cathartic right? An official movement swimming was fab. I'm gonna start my hydro again with mum...great time to splash around together defo. The Croydon project sounds great! :-) xx