Page 22 - TalkCare_Issue5_Online.qxp_OACP Talking Care Issue 4 July 2017
P. 22

  Gina Gardiner changing peoples perceptions about their own thinking - improving the quality of lives outlines her sisters experiences with her two sons ‘living with a genetic disorder’ and shares her own experience of ‘living with long- term disability’. Here are their stories...
The focus of this issue of Talking Care magazine is ‘living with long-term conditions, disability and learning disability’.
I set about researching inspirational people, who through life-changing events have gained internal strength, insight and the innate ability to rebuild their lives. Their adversity hasn’t beaten them but
has instead positively empowered them.
They have learnt to accept and revaluate their lives and in doing so move forward.
Journeying with their life- changing experiences has given them a very special gift – the ability to reach out and empower others – such people are Gina and her sister, two truly inspirational individuals!
“Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible.”
Francis of Assisi
Gina writes: As a family, we have a great deal of experience of living with long­term disability. I have been a wheelchair user since 1989 and at times completely wheelchair bound.
My sister and her husband found that their two lovely boys had a very rare genetic disorder when they were aged five and eighteen months. Their disorder meant developing fairly normally until the age of 7 and then a slow deterioration both physical and mental until they were entirely dependent on others for every aspect of their lives. Their life expectancy was early teens when they were diagnosed but they defied the odds in amazing style. Matthew was 34 when he died and Jamie is still with us aged 41.
My sister taught at a special school for well over twenty years, she was the Assistant Head when she left. She was able to offer her pupils and their parents the experience and insight that being a parent of profoundly disabled pupils brings.
She believes passionately in giving youngsters with learning difficulties the confidence and social skills which will help them to live within the community. Communication makes a fundamental difference whether it is spoken, Makaton or British Sign Language. Even those with profound difficulties can often learn simple signs to ask or respond. There is now research which shows that learning sign language early on reduces frustration and encourages more verbal communication.
As a parent and teacher, she has learned some salutary lessons:
• Trust your intuition – you know your child best.
• Persistence, resilience, and tenacity are required in large quantity.
• There are times when you have to fight your child’s corner, being well informed and firm but never aggressive get the best results.
• When any professional recommends medical procedures which they say will be life enhancing do careful and detailed research before you make a decision.
Recognise that you have to practice self­ care, just as airlines recommend putting your oxygen mask on first it is vital that you look after yourself. Eating properly, getting rest when you can, asking and accepting help including respite care when it is available will mean you are better able to care for your disabled child the rest of the family.
A very high proportion of marriages where there is a disabled child or children break down. It is important to keep talking to one another, to laugh and to cry – together.
For those who like to, support groups can be a great source of information, advice and help. Finding practical help and people who have a positive approach can help when you are feeling exhausted and ground down. Sharing your experience and supporting others in similar circumstances can help
Take one day at a time – you can’t predict the future, but you have to deal with the present
Gina continues: So now let me share a little of my story. I was the Head of a large Junior school for over twenty years and had experience of supporting youngsters with a disability, and helping their parents navigate the system.
I became the youngest Deputy Head Teacher of a large school aged 29. I had a serious ski accident in February 1983 when I fell between 150 and 200 feet down a black run when the mogul I was sitting on gave way. A few weeks later I was given permission by the medics to go skiing again as the Deputy Leader of the district School Party.
By the end of the week I was really struggling. I finally gave in and went to lie down. I suddenly found one side of my body had become paralyzed. After a hospital stays in Switzerland and England plus a few weeks recovery at home, I returned school. I had regained movement but was struggling with fatigue and pain. I was very pleased to get to the long Summer holiday and looked forward to being able to rest. It was not to be.
A couple of weeks into the holiday I got the news that the Head had died. I was appointed

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