Hugo de Savary's – living with learning disabilities.

Me

Born in ’76 London. A sister Laura  (she’s 2 years younger). Lived in France during teenage years. Now Bristol native of 10+ years, married (Kirsten) with daughters (Poppy & Zara).

My sister

When Laura was six months old, my parent’s world was shattered by the medic’s news:

“Your daughter is mentally handicapped… she might live, she might not. We don’t really know but good luck.”

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Laura was diagnosed with a Learning Disability. It later transpired that she had Cornelia de Lange Syndrome. This obviously dramatically changed my parent’s lives. Mine, initially less so, I guess due to our small age difference. Although my parents had told me that Laura was ‘special’, for me the only difference between my friends and their siblings was that she needed speech and physio therapy. I became more aware at the age of 8 at boarding school when Bernardo’s came to do a talk about ‘handicapped’ children, it was only aged 13 when we had moved to France that it fully dawned on me – but she was still just my sister.

Laura is…

If I were to describe my sis in 20ish words it would probably be something along these lines:

Small and dainty in stature, articulate and sharp, affectionate and loving, with a highly infectious laugh all coupled with a mischievous sense of humour.

Growing up

My first memory and feeling of Laura was probably the same that most siblings aged 2 have of their new brother/sister – she was a crying blob that was seriously muscling into my spot light. The transition progressively became smoother, until one bath time she truly showed me up, by fearlessly dunking her head underwater, holding it there for an eternity, whilst simultaneously opening her eyes and sporting a cheeky grin.  In my world going underwater had always been off limits – aged 1-ish, she had gained my respect and we had connected.

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Having a child with a LD is obviously going to stress relationships within the family unit. For me, I was incredibly fortunate in making that connection with my sister and we have always been close but I know of many instances where this not always possible. Laura and I have also been very lucky with regards to our parent’s own relationship, that it didn’t get blown apart as often happens in these cases.  I can only admire any parent who has had to brave it alone as I’ve seen the many battles my parents have had to fight on the medical and social fronts.

Why a blog?

When I left university I joined my parents in our construction business which was building bespoke luxury developments. It was around this time that Laura was due to finish at college and join the adult world, however we were all so concerned with the quality and provision of residential care that we set up Home From Home Care. Although this service is not suitable for everyone, my parents and I come into contact with many families who have similar battles and concerns.

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I believe that there is real shortage of information exchange especially on the web that is focused for families and friends affected by learning disabilities and would like to make my humble contribution with this blog – which might not always be LD related! Please feel free to add any comments.

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