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.

Sunday, April 11, 2010

Feeling Concerned

From the very first moment the word 'transplant' was uttered as a potential option for William, we were told that no transplant comes without complications and that it isn't a golden cure. Living with a transplanted organ, especially one as complex as the bowel, is a chronic health condition in its own right. William depends on a daily cocktail of medications to keep him alive and we were told there would be times when things don't go as well as others. William had a lot of early complications and his bowel took a while to get working properly but, once it kicked in, we never really looked back. We had the odd little bumpy day but nothing too worrying. The main concern was always William's stoma. He has no colon so has an illeostomy, where the bowel comes through the skin to enable waste to drain into a bag. William's stoma has been prolapsed for over a year. The bowel is an internal organ and wasn't designed to hang out of a lively five year old and so it began to get damaged. We knew it would need fixing sooner or later and, last week, that time came.

William and I have been back in Birmingham for the last week. He now has a very tiny discrete little stoma which is fantastic. All went well. William is sore and tired but that is to be expected. The bowel hates being handled. At first it pulls a total strop and doesn't work at all. Then it pours. William's bowel is at the pouring stage at the moment. I have been reassured by our team that it will settle but it is hard to relax when you've been there before and it didn't improve. Old memories are hard to ignore. I'll be relieved when things start to normalise again. William is hundreds of times better now than before transplant - a different child! The little set backs are worrying though as you are never totally sure they won't lead to anything more. We've been so lucky over the last year as Wills has been so very well and stable. We've got used to it and it's upsetting to see him a little more vulnerable than he has been. Some of the friends we've made over the last couple of years are facing much bigger hurdles and complications and they are very much in my thoughts now. This is nothing compared to what they have to get through.

It is fantastic to be home from hospital but I do tend to feel a little nervous whenever we come back with things a little bit different and some recovery still to be done. I think it feels even more scary when there is just one of you. I do call Paul to sound things out when I'm concerned about Wills but the decisions and responsibilities totally rest on my shoulders now and I have to juggle the girls' needs in there too. It's not always easy. I find the practical things are easier on my own. I have a routine and, although school mornings are a bit frazzled, it works. The emotional worry can be hard though. At the end of the evening, it's just me and there is a lot of time and space to brood. The girls have been at Mum and Dad's and are now off to their own Dad's for a week so a little concern over Wills is coinciding with a lot of quiet evenings.

This blog has talked a lot about post transplant complications and worries. These are all normal and part of the journey. It is a journey and one that would not have been possible without our wonderful donor and her family who said yes when asked during the darkest time in their life if they would be willing to save other people's lives. Had they not have said yes, we wouldn't have had a transplant and a William to be worried about. I was very distressed today to read this Of course, my heart goes out to anyone who may have agreed to donate all of their precious loved one's organs and are now being told there were specific organs their relations didn't want to donate. I am truly very sad for them. However, these numbers are tiny and it is a specific administrative problem that has now come to light and is being sorted. I think the reports have been blown up out of proportion by those who are rubbing their hands with glee at the thought of being able to try and blame the government for something so upsetting and emotive. To anyone using this situation as a part of their election campaign, I want to say how worried I am about their tactics. There are 10 000 people on transplant waiting lists. Of those, 1000 die each year - 3 a day! The way this report has been reported has created a real danger of putting people off registering as an organ donors. Going on to use it to undermine the work the present government has done in promoting organ donation is only increasing this danger. This issue is not something that I feel should be bought into the negative campaigning the Tories and their supporting papers are doing. If people are deterred from joining the organ donor register or saying yes if asked about donating their loved one's organs then people will die. The lovely Tor is on GMTV at 6.45 tomorrow morning to talk about her wait for a double lung transplant and do her best to make sure this doesn't happen. Please tell your friends about her. Tell them about William who is only here because of our wonderful donor. Tell the how grateful we are and how we think of her and her family every single day. Tell people not to be put off from saving lives if they or their loved one's were to die and ask them to sign the register. A lot of people are very upset and worried about the impact of this report. Please help me to show them they don't need to be.

Friday, April 02, 2010

Good Friday and Word Autism Awareness Day

One of the most moving things I've ever seen was the Good Friday drama and walk of witness we watched in Croydon today. We didn't follow it all because it would have been too much for William but we caught the final section in the city centre. We arrived just as the procession did. Jesus' bloodied dead body was carried, swathed in black to a slow drum beat. It was incredibly emotional and the most faith affirming experience I've had in a long time. I've struggled to take time out to prepare properly for Easter this year. I've been somewhat distracted by William's hospital admission being on Easter Monday. It's somewhat hijacked Easter. I'm glad I had that powerful moment today. I always think you have to experience something over Holy Week and Good Friday to really appreciate Easter for what it is. I've had that now and, even though the next few days will be dominated by preparing William for hospital, I will feel that new life and revival that Easter brings.

As well as being Good Friday, today was World Autism Awareness Day. William asked my today why they crucified Jesus. One of the reasons I gave was that they didn't understand him and so were scared by them. There is a parallel there for William. He is charming, funny and engaging and everyone who meets him adores him. But, there are elements of his behaviour that the world doesn't understand. His rigidity, his obsessions, his utter panic and distress when things don't go the way he anticipated look now like an immature tantrum but, as he gets older, they may seem threatening, even frightening to people. People will think William odd. He's not odd. William just sees the world a little bit differently to most others. He sees things in back and white and struggles with things that don't fit rules and structure. Like many people with Asperger Syndrome, William is extremely intelligent and gifted and has a huge amount to offer society. The greater society's understanding of autism and Asperger Syndrome, the easier it will be for William and those around him to communicate and appreciate each other. I'm grateful for those who have supported today. It gives me hope that William will grow up in a world that understands him and are prepared to adapt to his needs. He is certainly working very hard to adapt to the needs and expectations of those around him so it's only fair we all try a little too. Please visit the National Autistic Society and learn three things you didn't know about autism.

William wasn't moved by Good Friday at all. Our curate told the children the story of Jesus' death, explaining it's a sad story. William turned to me and said;
"But Mummy, it's not a sad story at all. Jesus had to die didn't he. It had to happen that way."
When I asked why, he replied;
"Because he had to die so we can see him when we die."

Maybe sometimes just accepting things and not looking further than the black and white is the best thing. You could read several theology books focusing purely on that William had summed up perfectly in two sentences.