Parents who Pioneer

Interior room with a cot in retro style

In this post, I want to tell you about a little boy born with a disability to pioneering parents.

His parents had started their family fairly late – his mother was an artist who had studied at various impressive art schools, and his father had been an overseas journalist before returning to the UK to ‘get a proper job’. Their little boy arrived after a long and difficult labour, and he was born with a dangerous congenital condition which, without surgery, would mean he couldn’t survive. At six weeks old, they fought to get him the latest surgery to save his tiny life.

When it later became apparent that he also had an unrelated long-term disability, the medics and experts recommended that he should be placed in specialist care and that the couple could then go and have another baby who wouldn’t be disabled. His parents told the experts what to do with their advice!! There were disagreements amongst the wider family about what was best.

His mother took him to a ground-breaking therapist practicing near their home in London, his father included him in all family activities and bought him the kind of bicycle that he could ride, his grandmother contacted a school which would take him and integrate him with non-disabled children. They joined with other families of children with this same disability and formed the first parents’ support charity for the condition.

Sounds familiar, right? Sounds modern and newsworthy?

He was born in 1938. The surgery was basic by current standards and only available if you paid. The disability was cerebral palsy. The therapist was Berta Bobath. The support group is what we now know as Scope. He is my uncle, now approaching his 79th birthday – those battling parents were my grandparents. He is now retired, living independently in sheltered accommodation. He receives his occupational pension and thinks back on his life with joy.

And here is what I know from seeing it from the other end of the story:

•Parents will always fight for their child to get them the most up-to-date, and best, solutions.

•Grandparents have always been an important part of the armoury, for both wisdom and energy.

•Professionals will always offer the habitual solutions for problems they haven’t yet solved.

And here is what I’ve learned:

• A few people will always think outside the box, and they will band together to change the world.

•Integration lasts a lifetime.

•Things can always be better.

Ruth

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