Liz and Sarah Jane (Celebrating Families)

There are very few stories to tell that don't involve a number of people, and the leading lady of my story is bowing out of the limelight. 'Sarah Jane' as she now wishes to be known, has asked that stories and pictures of her stay at home.

I am really proud of both of us at this point - what a strong self-advocate my grown up daughter has become! How fantastic that she is acting her age - I mean, what other young woman would want Mum blogging about her. And I have listened… despite the world's view of her capacity to make decisions, to talk of her 'mental age' not her actual age - I have continued to believe in her.

Part of me wishes she had waited another month before coming to her decision and I've been hanging on in case she changes her mind, but like her mother she can dig her heels in and stand up for herself.

I would love to share more of her story with the world to counter the negative images of young disabled people we have seen on TV this week. But maybe this says more…  teenager tells her mum to back off… teenager cringes with embarrassment at the idea of people talking about her. Young and Powerful! Rock on Sarah Jane!

I'm signing off the regular blog for now, I think I'm in for some wonderfully difficult years thanks to person centred thinking and community connecting.

Keep up the good work folks.

Re-writing my will has been on my mind for a while - well nearly 16 years actually!  I know from both my own experience, and that of countless other family carers, that is a very hard thing to get around to. It is so painful, thinking about a future when we will not be around to love and protect our children and it probably isn't melodramatic to suggest that nobody else will care quite as much as we do. The legal stuff about money and possessions is relatively straightforward but the business of 'trusts' is far more complex and none of it is even vaguely person centred! To me, person centred thinking is key to the whole process - there is no way to predict when I will die or what sort of life Sarah Jane will be living at that point - so in my 'letter of wishes' I:

• direct the Trustees to her Person-Centred Plan
• suggest they use the person centred review process to keep things fresh
• recommend that money in her trust is used to; pursue dreams, maintain relationships with important people from her circle and assist her to maintain 'important to' in her life

Of course choosing the trustees was an interesting process too. Their job isn't supposed to be hands on but they need to know and love Sarah Jane and have a complementary range of skills as well. I struggled to choose four, the maximum allowed, but when I remembered that I wasn't selecting a Circle for an unknown future date, I relaxed and again referred them to her Circle for support with decisions and day to day actions. I used Hopes and Fears with the trustees too (it was my starting point!) to make sure I could incorporate their concerns into the trust deed and letter of wishes.

I still can't say it was an easy thing to do and I know I will have to update it regularly, but using person centred thinking made it possible. I really don't know why it's taken me so long to work that out!

Writing the Christmas cards got me thinking about how we all stay in touch.  There are some people in my address book that I rarely see, yet it seems like a good opportunity to say 'you are still important to me' each year at card writing time. I fill myself with good intentions for visits and phone calls, but know that the limited time I have can't spread quite thinly enough - and as a southerner I have long been resigned to the fact that the distance is doubled if the journey starts in the south, so we will have to jump on a train.

One of the things I started doing a few years ago is to put a little note and address slip in with my cards reminding people to send a card to Kenny. When Mum was alive, people always sent his cards to her address, despite my encouragement to send them direct to him. Now I worry that without my memory jogger people would just forget about my brother, just as the doctors and much of the family encouraged Mum and Dad to do 48 years ago. Of course they didn't, but the feeling that he would be a burden never left them and meant it was hard for them to encourage people to have independent relationships with him.

I'm very pleased the world has moved on and am confident that most of the people in Sarah Jane's life, love her for herself, not as a favour to me! It is a challenge to turn that natural support into something a bit more formal, and other than Circles of Friends in school we have pottered along without naming the circle of support that has occurred naturally. Families always tell me how hard it is to take that step of calling the first circle meeting but with that 16^th birthday looming it is time to make it real. Besides, I've been updating my will and I don't want to feel like I have to leave everything to chance! For once I will be relinquishing my pinboard and pens and handing over to the wonderful Liz Barraclough who reminds me not to do it all on my own.

Meanwhile, back to the glitter and glue for those person centred Christmas gifts….

Merry Christmas everyone.

It has got increasingly hard to take a good photo of Sarah Jane as she has become more and more self- conscious and loves to pose in a way that my amateur photography skills can't do justice to.  I decided to get a professional portrait done and contacted Dawn Robinson, who had carried out some photography projects with people with learning disabilities in our area.

After I booked the session, I got an email confirming the date and asking us to think about what was important to Sarah Jane and to bring along her favourite music and things that might help her relax, as well as props for the photo-shoot.  Dawn also asked me to let her know what kind of support Sarah Jane might need from her, to enable her to feel relaxed and get the best out of the session.  We are going back on Saturday to have a look at the proofs and I am particularly looking forward to the ones taken with an ipod and headphones and swanky leather jacket.  That One Page Profile is about to get a style update!

Increasingly, I am pleasantly surprised at the way person centred thinking is becoming common practice in the world - obviously we've got a long way to go, but its popping up everywhere.  A professional speaker from industry had me chuckling as he enthused about the importance of dreams and setting small goals towards them.  Right now I'm dreaming of a fabulous new home for my brother and with a Dimensions Support Advisor, it's getting closer.  I'm loving not having to do everything myself and being able to trust the team to work alongside us to get it right, leaving me a bit of time at the end of the day to work on Christmas presents with Sarah Jane.

Our table mats have been very popular so we are making some for family and friends, although as its Christmas we aren't filling them with chores.

I had a good giggle when the 'family feedback' form for Sarah Jane's annual review popped through the letterbox. A scant half page was provided for me to give my views on Important To / Important For, Working / Not Working and Questions to Answer. Needless to say my answers spanned 4 pages and prompted a phone call to invite me to talk about some of the issues immediately.

Sarah Jane is in a mainstream school following an GCSE/BTEC curriculum. Sarah Jane also has significant learning disabilities so there are clearly a few challenges.  Despite this I expect her to achieve pass marks in all but maths. Throughout school there has been a continual process of raising expectations and using practical person centred thinking to set goals.

My latest offering to the school is a worksheet for teachers that I hope will help them to support her better.  I noticed how delighted she is when she gets a commendation but has no idea how she manages it beyond trying hard. I know she tries hard most of the time so I decided to unpick the mystery and I've got a meeting with her support team next week to get them on board. As usual it's not rocket science so a focussed half hour should get it sorted.

When I talk to people about 'Important to' I always stress the importance of refreshing it as people move through life - and frequently for the first three decades. I had a strong reminder of how swiftly things can change when we headed off to Blackpool to see the lights last week. Sarah Jane asked to go on the big wheel, so incredulously I bought the tokens wondering at what point her fear would kick in and we would retreat to the teacups. It was a delight to hear her squeals of joy as the wheel started moving. Where has that fearful girl gone I wondered… If she gets any braver it will be me who is the nervous wreck refusing to get on the ride. Nothing is impossible I remind myself each day, and it's days like that one that warm my heart.

Liz

Oh what a month!The holiday at the end of August has faded into a distant memory and events have prompted me to look at my own one page profile which I am about to share with family and friends. Sometimes I forget that it is neither possible or desirable to do everything by myself. However, over the last week I've asked for help with buying a new car, picking up shopping and even supporting a group of family carers. People have been delighted to help and I really ought to do more of the things I suggest other people do to look after themselves!

Sarah Jane has started her GCSE/BTEC curriculum and we had a lovely time last month making a gorgeous folder to note down what topics she is working on in each subject so that I can work out the best way to support her learning. I'm looking forward to all the dance performances we will go to see, but not yet sure how to use that approach with science! A new year means new teachers, many of whom haven't taught her before so it's back to the beginning with person centred resources for them all.

Complaints are made so much easier to deal with when one party says 'sorry, we were wrong,' and this has really helped us move on with my brother's support. I can't stress enough what difference this makes! We are working through an action plan that is mostly coming together very well. Communication is still a tricky issue, it doesn't take long to keep people up to date and some good written information about the situation would help too. I've given everyone involved some learning logs and communication charts. I'm toying with the idea of giving them a communication chart for me:

The 'sorry's' have taken an extra good turn this morning as the other driver in my car incident has finally admitted liability! The shiny new car is coming on Wednesday too.

Thanks to everyone for your support this month, I couldn't have managed without it.

As any working parent will know the summer holidays are a finely tuned juggling act. All the usual support people, family, friends, child-minder even, take holidays so there is a near constant review of 'working / not working' and negotiating around routines.

Sarah Jane really needs to know what's happening each day, in advance, and now she has got texting skills sorted we have all been bombarded with requests for details. It means she can now take responsibility for getting some of the information she needs herself which is real progress and I'm very thankful for unlimited text contracts!

We're going on holiday tomorrow and I'm planning to use the ample time hanging around at the airport to explore the calendar on the mobile phone so that Sarah Jane can begin to use that too. In fact, she's getting so good at person centred thinking that she ran a 'like and admire' plate painting activity for me at a recent family event!

I've been working with Max, Helen and Julie to develop some conflict tools recently and have a great opportunity to trial them in a dispute with my brother's service provider. Both my sister and I have experience of both sides of the family/provider situation so it will be interesting to see how we all balance the different issues. One thing I am sure of is that things will be improved by bringing person centred thinking into the arena.

We're off for some rest and relaxation now…

Sarah Jane's love of music and musicians has been a frequent topic of conversation around the dinner table recently and she has arranged to have some informal lessons from a rather gifted cousin over the summer. We are hatching a plot to enable her to join in a few busking sessions with her local favourite.

Being Present

With this in mind, I booked tickets for a performance at the Halifax Festival. When we arrived at the Minster Sarah Jane refused to go in - memories of cold, long ceremonies with Brownies and Guides convinced her that this would not be fun. I lured her in with a promise of cake at the interval, but through the first act had regular requests to leave.

Having Presence

When Grassroots Theatre came on stage everything changed. Totally engrossed and beaming with joy I was relieved that I had insisted on her staying. In a matter of seconds she joined the audience.

Actively Participating

At the interval Sarah Jane rushed off to talk to the group who mingled with the audience around the cake stall. I don't know the detail of the conversation but she secured an invitation to join them on stage for one number in the second half!

Connecting

Buzzing with confidence she then began collecting cups and plates, chatting to everyone and making friends with the washing up team. She had real conversations about school, hobbies, favourite subjects - so much packed into 20 minutes. Grumpy teen had left the building!

Contributing

As the second half began she started dancing at the side of the aisle, encouraging the audience to clap and dance. She joined the company on stage for the last number with extraordinary self confidence and beamed through the applause. At the end of the show lots of people came to speak to us both. I was in no doubt that her presence and contribution to the evening had made a huge impact on many people. Time for us to find a place for this to be a regular contribution from Sarah Jane, I'm sure something local will work out well.

We were at a party a couple of weeks ago and Sarah Jane was waiting impatiently for Elvis to put in an appearance. He has been her highlight at many an Inclusion Gathering and although he is better known in the world for his day job, to Sarah Jane, Elvis is the primary persona.

It quickly became apparent that there was only one reason Sarah Jane was at the party so in an attempt to deflect her impatience I began talking about the real Elvis.  My main memory of him was that of his death which happened when I was on a very wet family camping trip when I was 16. As I shared this memory a tear rolled down Sarah Jane's cheek and it became apparent that she thought there had been a tragedy in the room. I pointed to the very much alive Elvis impersonator and she recovered, but I had re-learned a valuable lesson about how much I assume.

Elvis Presley died in 1977, everyone knows that, don't they?

Person centred support is so hard for many people to grasp because most of it is invisible. As parents we give support as automatically as breathing, but asked to explain the mechanics of it and we are stumped. Withdraw it, and our children are disabled by its absence. I started to go through Sarah Jane's Essential Lifestyle plan again with this in mind after a conversation with a friend. Some of the support is built into the fixtures and furnishings of the house as well as my head. For example, Sarah Jane has nine small drawers in her bedroom so that her clothes are sorted into clear categories - if something is in the wrong place she just can't find it and mornings…. would stretch into afternoons! School shirts are hung with most of the buttons done up for ease and speed and bras are fastened before going into the drawer. There are three small boxes in the sock drawer to separate school socks from weekend socks from trainer socks… the more I think about it the more I realise I need to edit that plan!

I don't remember deliberately deciding to make these adjustments, and I can assure you that such orderliness doesn't come naturally to me - there is no such order in my wardrobe. I've got a new question to ask myself and others, 'What do you do or have in this room that builds the capacity of your daughter or son?'

I think we need a bigger folder and another ream of paper!

I'm delighted to be able to share these gorgeous pics with you this month, which were sent to us by Cath Barton, a person centred planning coordinator from East Lancashire.

Cath has been following the Celebrating Families blog each month, and last week got in touch to say that she and her family had been inspired by our blog in April to create a like and admire poster like the ones from www.notonthehighstreet.com

Cath says "As you can see from the photo, our achievement wall was getting crowded and we were struggling for room for new things. We've just redecorated, so the older photos, certificates etc have been stored in folders and the new like and admire posters are starting the next round of achievements."

I love the idea of an achievement wall, and think Ellen and Zachary's posters are fab.

This will be my last month blogging for Celebrating Families. Thank you to everyone who's followed the blog, especially to all the people who have been in touch over the past 2 years to share their insights and stories - they've been a real inspiration.

Liz and Sarah Jane will be writing the Celebrating Families blog from June, which will be filled creative and practical tip, ideas and examples from their own lives.

It's been great blogging with you!