Guest Blog by Rachel Mason, Parent carer
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.