My name is Sophie Dow and I am a journalist and writer by profession – as well as the Founder of the Salvesen Mindroom Centre here in Edinburgh – but most importantly I am Annie’s mother.
34 years ago my husband Robin and I were catapulted into a completely new world with the birth of our daughter Annie.
And it was a world of shocking inequality and apathy.
Annie has a learning disability and she is certainly neurodivergent.
She was born with a Chromosome deletion on Chromosome 1, the upper arm. 25 genes are missing – out of the 22,000 that we must all have to function fully.
We didn’t know that then – and it was to take 17 years of searching for an answer – until we got the final diagnosis in 2007.
As a consequence of those missing genes – she has many of the most common neurodivergent traits/difficulties – she can’t read, write or count, she has no concept of time and she has a very short attention span. Nor does she understand cause and effect, the future, money or conceptual thinking.
However – what we don’t need to worry about is her happy disposition, her loving nature, her humour, her thoughtfulness, her solution focused instinct, her moral compass and her wonderful creativity – all innate characteristics that have a designated place in some of the genes that she actually does have.
My search for diagnosis for Annie eventually took me to a conference on learning difficulties – as it was called then -one of the very first in the world – in Gothenburg in 1998 – when Annie was 8 years old.
With 2,700 delegates at that conference – it was clear to me that learning difficulties was a public health issue that hadn’t been addressed – and that it is an issue that concerns us all.
So I set Mindroom up 25 years ago in order to provide help, support and constructive solutions. We need to look at what everybody can do and not at what they can’t do.
Which brings me to ILF Scotland.
Your vision – and your mission – is for independence, dignity – and the very important flexibility.
We had never heard of ILF Scotland, until our social worker suggested a meeting with Sandra Robertson from ILF Scotland.
This took place right before Christmas last year and my husband and I arrived to the meeting armed with our years of experience of proving our case, defending what we have already managed to put in place and prepared to compromise our hopes.
Well, none of that happened.
Instead we were met with warmth, understanding, consideration and very constructive suggestions of how we could all help to improve Annie’s daily life and weekly structure.
So, thanks to the Independent Living Fund, Annie can now go to Artlink in a taxi on Fridays (it’s a fair bit to travel from Granton where Annie lives, all the way to Mayfield) and she has been awarded a full day at UPMO (Upward Mobility) on Wednesday’s where she attends an arts and crafts class and is part of a community of chums. Finally, ILF pays for an added 6 hours of support from The Action Group to be used flexibly. Which will enable us to start planning a week’s holiday for Annie without her family, but with support.
Independence, dignity and flexibility – indeed!
The 28 October 2017 started just like any other day – and ended as one of the best days of my life. Because – suddenly, without warning and while we were driving along somewhere in the car Annie said: ‘I love my life.’
She said neither more nor less – and she said it more as an afterthought. As soon as we came back home, I wrote down what she had said on a piece of paper and asked her if that is what she really said. And if it was, could she please then put her signature to the statement.
She did – and that note now sits proudly on the wall in my study.
It is primarily mine and Robins role to make sure that Annie continues to feel that way about life.
But we can’t do that without collaboration with organisations such as ILF Scotland – and society as a whole.
Thank you ILF Scotland!
