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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
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
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:
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
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
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 16th 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
Meanwhile, back to the glitter and glue for those person centred
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
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.
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:
At this time
When this happens
We think it means
We take Kenny to a medical appointment without Liz
She GETS CROSS and has to use her time to book another
She wants to be involved in finding a solution for Kenny's
health problems and thinks it is important for us to communicate
regularly with her
We should let her know when an appointment is arranged and
rearrange the appointment if necessary so that she can
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
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
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.
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.
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
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!
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
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
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
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
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!