In the UK Carers week and Learning Disability Awareness Week are celebrated back to back in ‘blazing’ June. Both resonate so powerfully with me and my life defined by Jen, our daughter who arrived almost 45 years ago with the unexpected addition of Down’s syndrome.
We all know that becoming a parent changes your life for ever. Little did we know that becoming a carer overnight would define my career and my life, and ultimately lead to an almost indescribable freedom.
When a Down’s Syndrome Diagnosis Changes Everything Overnight
With Jen’s birth came noise. At times deafening noise which we weren’t ready or prepped to hear. A bombshell had just landed in our laps.
From day 1 the points shifted as we were shunted towards that parallel universe ready and waiting to receive us. In those early days it was pediatricians, geneticists, gynecologists, occupational therapists, health visitors, child development workers, who all ‘advised’. One after another they loaded extras on our shoulders – extra appointments, reviews, suggestions, systems, opportunities. The only one who offered any comfort was our GP who visited us at home at a time of our choosing and chatted with us, not at us. He listened and really helped us think through where we were and the reality that had just turned our lives upside down.
As a signed up introvert I didn’t need a local circle of friends beyond my husband and those I interacted with through my music and farming activities but none of them could relate to our first taste of parenthood. Malcolm and I were on our own. But now we had Jen too.
Jen became the architect in building the communities around us we didn’t know we needed.
Sixty Strangers Who Became Family
Villagers we didn’t know reached out to offer help. A lady from over the road knocked on the door and announced that she’d be babysitting for us one night the following week so we could have time for ourselves. Kathy stayed in our lives as Jen developed our community with the decision to pattern with BIBIC turning into reality at 9 months old. Over the next three years there were 60 volunteers, mostly strangers who became family friends. Together this community melded and created a solid foundation for Malcolm, me, Jen and Anthony, who at 21 months Jen’s junior was born into a hive of frenetic activity underpinned by the extraordinary community. They entered our lives because of Jen but supported each of us to be able to live and to breathe as individuals.
One step at a time we’ve journeyed through life creating new communities each time Malcolm’s job changed which happened routinely every 3 years. Jen had different needs in addition to many similar needs as Anthony. Our recipe has always been the same. We have found people/organisations/schools we feel enthusiastic about working with who want to work with us before finding a house to live in. It worked brilliantly for 18 years but then we like others fell into the void of adult social care.
Falling Into the Void of Adult Social Care
The next 10 years were desultory. Jen and I focused diligently looking and searching for training opportunities for her to pursue her dream to develop a career in dance.
Choosing to live with a person you love can be hard work. Being expected to live and care for a person you love who happens to have a learning disability is significantly harder work. And in my experience every day is a tiny bit harder than the previous day. Moments of joy were celebrated but finding yet more innovative and creative ways to encourage sufficient effort to achieve acceptable results in basic areas of life such as personal hygiene drove me to despair.
From Jen’s perspective, if the day didn’t include dance what was the point?
During those 10 years we had scant community support. Finishing school with no structures or regular support in place we once again had to devise our own. Our world was seriously challenging and each day it felt as if we fell one step further into the funnel of bleakness buoyed along by occasional glimmers of hope. Many days I opted to be out of the house because Jen was there. We were both deprived of personal freedom and space. Jen was happy and able to spend a couple of hours with her own company but I would invariably leave a small ‘ask’ in order that she could take pride in ‘achieving’ by the time I returned. It worked some of the time but by no means all of the time.
Anthony meanwhile, a born survivor, rolled down the red carpet picking up GCSEs, A levels, a degree, work, house and family. And since leaving school, all achieved with minimal direct parental involvement.
2010 – 2012 were the making of Jen and the salvation of us.
Part one of a story about community, care, and an almost indescribable freedom
Every family deserves to believe in the art of the possible. Read more of our story here: blackwells.biz/blog-page