Not just someone lying in bed 2B

An inspirational example of how one-page profiles can help people in hospital connect with others during confusing and difficult times. Kris had no idea of the impact her mum’s one-page profile would have, not just for them, but for the medical staff, other patients and their loved ones.

A photo of Laurine's one-page profile on the wall in  the hospital

A photo of Laurine’s one-page profile on the wall in the hospital

Written by Kris, a person-centred thinking trainer

Meet my mother, Laurine Kaiser. She has been married to my father for soon to be 63 years. They have three children, myself (Kris) being the middle child in addition to my older brother Stephen and my younger sister Kimberly. Mom was born in 1927 and will be celebrating her 86th birthday in November this year. She has always enjoyed an active life as a Mom, wife, travel companion, pharmacist, bridge player, friend and sister to a younger sister and brother who live in Kitchener.

My Mom and Dad moved in to my home in 2010 shortly after my husband passed away. We spent a few months together before my Mom fell ill for the first time in her life. She ended up at St. Joseph’s hospital in Hamilton where she remained a patient for five months. The doctors had quite a challenge for some time trying to figure out exactly what was wrong with her. She eventually ended up in the Intensive Care Unit (ICU) and spent almost two weeks there before she graduated to the Progressive Care Unit.

At that time my Mom was not able to use words and was extremely tired from the long journey she’d been on in the ICU. On several occasions nurses, doctors, therapists etc. would enter the room and ask me questions about my Mom…did she ever work, what line of work, is she married, how many grandchildren etc. That was when I decided to create a one-page profile for my Mom. Looking at this frail yet dignified and elegant woman lying there so peacefully yet so helpless I knew that I needed to do something so that people could connect with my Mom by looking and reading her profile. It was a way to humanize my Mom and value her as a person with a story to tell and not just someone lying in bed 2B.

I was excited to complete this one-page profile for her, knowing that this would make a positive difference in her life. I created the profile in one night with a dollar store bristle board, a black magic marker and a few photos of her along with the joys in her life.

When I returned to the hospital the next day I couldn’t wait to put it up! My Mom was thrilled with it and stared at it for hours. She would smile and point to people making kind gestures. The nurse came in the room that afternoon and read the board and quickly pointed out that my Mom’s favourite TV show was Big Bang Theory which was also hers. She remarked, “I’ll put it on the TV for her tonight at 7:30. Mom gave her the biggest smile.

Word seemed to get around the floor and the hospital about my Mom’s one-page profile and soon other patients’ families and friends on the floor were asking to see it, vowing to create one for their loved one. It just seemed to snowball with positive remarks from all. Close to the end of my Mom’s extended stay at St. Joseph’s the administration team came to have a look at the profile and said that they should introduce this in their hospital. That was a great day!!

Doing the one-page profile for my Mom made such a difference in her mental and physical recovery. Having this tool created a way for others to have a conversation with Mom and it also provided information about her interests and hobbies which often was a source of some great chats with people she met at St. Joe’s.

I’ve always known that the one-page profile works however I didn’t know the impact it would have on so many people and their loved ones.

 

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By regaining your identity, you release your child to build theirs

Guest Blog by Rachel Mason, Parent carer

Rachel Mason

Rachel Mason

Once upon a time, I had a live-in job at a Prep school as a boarding matron at the time. Looking after all those little ones, would get me dreaming of the day when I’d have my own.

On my nights off, my now hubby and I would  sit in the pub and picture picnics at the coast and football in the park.  We just knew we’d make brilliant parents

This was probably the last time I allowed myself to dream for many years to come.

We began our journey as an SEN family in 1989 when my eldest son Greg was diagnosed with Autism and learning disabilities at 27 months old and Shaun with Autism 2 years later. As time went on our dreams disappeared and  my life seemed to be shrinking in ever decreasing circles until I was living day to day in a reactionary survival mode. There were plenty of specialist services around our sons, delivering to their own assessed needs.

Year in, Year out we would read reports of their progress towards the ‘social norm’ but for our family it was always Groundhog Day.

We were passive passengers on this new journey that services had set our family on.

We had lost any control of our lives and  the will to dare dream of a different future than the one chosen for us.

In 2004, Norah Fry research centre and Helen Sanderson Associates (HSA) were doing a joint project piloting a 6 week  intro to person centred planning and were looking for families to participate. I joined a small group of 8 parents who were gathered gingerly in the back room of a local pub. We knew of each other in passing at parents’ evenings or school fetes but each you could see was on their own island. An isolation that had been caused by the process of service pathways, separating us from our mainstream peers, each other and our community.

When we were asked to introduce ourselves we were “Greg’s Mum, Sarah’s Mother..” we could talk for hours about them..

.. but  all of us were like rabbits in headlights when asked to talk about ourselves!

Think about it for a moment.. We had all spent year after year reliving our child’s experiences and  repeating our child’s life history for services. There wasn’t anything we didn’t know about our child. We had invested so much that it was as though we had taken on their identity!

This role left no time to be a wife, a daughter , a friend. There was no room in our preoccupied short term memory to store our own memories that we had had a life and aspirations for ourselves and our family before this.

We were taken on a personal journey that for some was quite emotional but most importantly for all, liberating.

As we talked over the weeks we realised  the way in which systems of support within services were set up, had gradually deskilled us and the ownership of  ‘any future’ we might get, now belonged to services

The aim of the course was to introduce us to some person centred planning tools and how we could use them to gain back some of that control and determine our own future  outcomes for our  family

In order to do this for our children, the facilitator wanted us to look at ourselves first. Enable us to see ourselves as individuals.  We were asked to write our own one-page profile. Believe me when I tell you – it was like pulling teeth!

It was as though we had all ‘archived’ that part of us in order not to get distracted from our advocacy role by our own hopes and dreams and also, if I’m honest, to protect ourselves from continuous disappointment when our personal goals  were constantly sacrificed.

We were all so exhausted by the system  that we had forgotten the many skills and assets we had and it was very rewarding to recall and record them.

We all left this project changed people.

For some it was an awakening to a lost identity inside themselves but most importantly it helped us all to separate ourselves from our child, enabling us to step back and allowing them to build their own.

Having a one-page profile for myself helped me to find a healthier caring/ life balance. It gave me back perspective, this in turn gave me renewed strength and purpose to work towards my own goals as well as those of my sons

Up until now I had not even thought there was a future for my son. Now I realised that not having a plan for him and constantly reliving his past whilst working with services, meant he was unable to move on as I (his identity) was risk averse and stuck in the past.

Whereas before I could not see the wood for the trees, with clear positive statements within our one-page profiles, I would see solutions instead of problems. I now saw services around my son as ‘tools and resources’ to achieve his aspirations. The one-page profile was the guide that his supporters could use along with his 247grid which I used to map his progress and where he still needed extra support. At last we felt more in control as a family.

My son’s one-page profile also supported me to have a better conversation with schools who began to see me as a partner.  We were at last  ‘Singing from the same hymn sheet’ (page 37)

I truly believe being introduced to one-page profiles changed my life and the continuing life journey we took as a family to achieve what we have to day.

Using profiles professionally with colleagues and families

An example of how one-page profiles can assist people professionally. Chris talks about how his profile has improved communication and understanding with colleagues, managers and the families he works with.

Chris' one-page profile

Chris’ one-page profile

Written by Chris

I am a Facilitator with MacIntyre’s Family Footings programme.  I support families to learn new ways to make their voices heard and exercise greater choice and control over the care and support they receive. I use my one-page profile as a way of introducing myself to new people.

I originally created my one-page profile when I was applying for my job. I was asked to bring one along with me to interview. By writing it, I felt like I could give my interviewers an idea of who I really am – not just the qualities I have that I would normally talk about on an application form, but information about my other interests and a bit about challenges in my life too. I wrote the text for the profile myself and showed it to my wife and my parents afterwards, asking for their feedback. Since then I have made a lot of little changes to my profile to keep it relevant. For instance, I have amended the bit about my running as my weekly training mileage has increased. I added the bit about supporting individual families when brokerage started to become a bigger part of my role at work.

I use my one-page profile a lot at work. I often bring copies with me to workshops I lead for parents and professionals in order to introduce the tool to them in a way that will support them to use it reflectively before immediately applying it to children they support. I give copies of it to families that I work with on an individual basis to help them see a less formal side of me straight away. I have also written another, less personal version of my profile that I can use to introduce myself in circumstances where I need to showcase my professional skills and attributes, as I realise that my personal one-page profile isn’t appropriate for every situation.

Parents and carers with whom I share my one-page profile frequently tell me how refreshing it is to have a more holistic look at who someone coming to their house to support them actually is. It’s a good way for me to introduce the tool to them too because reading my profile often causes them to get excited about the potential benefits it could have for members of their own family. When I have had chance meetings with people who have attended my workshops in the past and have seen my one-page profile, I am often surprised when they ask about my running or songwriting. Because we have shared things with each other about what is important to us, we have a better starting place for forming relationships that are based on mutual respect and understanding.

My one-page profile has also allowed me to have better relationships with my colleagues and manager. Because we all created and shared our profiles when we started in post, we all started our work with an appreciation of each other’s strengths and information about how best to work together. For instance, my co-workers know from my one-page profile that I prefer to receive information electronically, and I know that some of them prefer to receive information on paper or in conversation. We have also taken time during team meetings to revisit the ‘Like and Admire’ sections of our profiles and add things to each other’s. This has helped build our working relationships with each other and has helped me to gain extra confidence in certain areas of my practice because of how my colleagues see me.