Genome Research Project Now in our fourth year of supporting Muir Maxwell Trust Clinical fellow Dr Simona Balestrini - please click here for further information. Close notice
Bg Top Edge Bg Bottom Edge
Home > News > Blog

A world peace moment

A world peace momentI spent a week in France on holiday, taking a break from my charity work. Eight ladies met in Provence, hosted by my lovely sister in law who runs a company called Picnics in Provence. She lives in Melbourne, Australia but hosts these week long bespoke events for the discerning tourist in June and September. They are unique. They are exquisite. Seriously, if you would like an absolutely out of this world experience exploring hidden parts of Provence, let Nikki be your personal host and design your uniquely tailored itinerary. She won't share much of the details with you till you get there but her surprises are worth waiting for. You won't regret any of it, other than your waist line perhaps - for a bit!

Eight ladies arrived to be hosted by Nikki at a stunning converted farm house near the town of L'Isle-sur-la-Sorgue, a town oddly twinned with Scotland's Penicuik near me in Scotland - not that the two are remotely similar. My arrival felt like a combination of a Bridget Jones moment as I dragged my suit case up the long beach pebbled-stone pathway to the house, I imagine a bit like entering the Big Brother House as you are faced by strangers. But there were to be no cameras other than our own and we were well matched. Amidst the group were three of my relatives by marriage, including Nikki and all the others from Australia were related too, either by family or in business. It was safe ground for us all.

The point of sharing this story with you as my blog for this week is that I took time out on holiday with just eight ladies and amongst them was one from Australia with a special needs son like my own. The odds on that happening must be quite low. We connected pretty quickly and our stories, though they were different, were the same. Her son is profoundly autistic. My son has epilepsy with autistic tendencies too. Both are severely learning disabled young adults. What it took for us both to be there in terms of organisation is beyond most people's imagination, unless they are there too. What it meant for us both to be there is also beyond those same imaginations.

We had moments of connection and reflection as we compared stories throughout the week. We empathised deeply with one and other without necessarily sharing too much. You don't need to when you live the life because you know. And when you are away from it in some ways you don't want to either. It's not selfish it's just self-preservation. We both understood the value of that in spades.

Uniquely in these circumstances, I was fortunately supported by family and so was the lady from Australia who had a family member and a business colleague in the group too. So there was group wide understanding of our circumstances and our burden and also our pleasure. Nikki took us all to new heights in terms of overall life experiences and at the heart of it was the beauty of hidden parts of Provence and of course, delicious food and exquisite wines - the latter being our poison perhaps, in the nicest possible way. It relaxed us and it loosened our tongues.

We had a couple of evenings when our mission was to right all the wrongs of the world, striving for world peace and all that, as girls are want to do. On one occasion that included the world of learning disability and I doubt I will ever forget it because that late night articulate, emotional and animated discussion evidenced to me that all my issues for our 18 year old son Muir in terms of care are universal. We have a global problem in the way that we are caring for, or perhaps not caring for our profoundly learning disabled young people. Please read the words - profoundly learning disabled young people. Not just learning disabled people or those with learning disabilities but those who are profoundly learning disabled. Not just disabled people but learning disabled people. Not just people with profound learning disabilities but young people with profound learning disabilities. This group represents the most vulnerable in our society, the most needy, those who need the most support in our society because their needs are absolutely profound and their needs are life-long. Sadly, society is failing them and their families too. It's a fact and I know it now for sure. Political correctness has overshadowed true need across the world. 

Amidst our group was one lovely lady who was desperate to help her friend, the lady in our party that I have already mentioned and another friend, both of whom she knows struggle with their profoundly learning disabled young adult children. The equation defied her though. Why can't she help to provide the means to deliver residential care? Surely it's not that difficult? But sadly it is because the funding follows the young person, provided by governments, authorities, councils, the state - it's the same the world over. Not enough funding in almost every instance and an absurd reluctance to put that funding where it is most needed. Nothing in many third world countries. A high quality residential care home, which is what we admit is needed, is an empty shell without carers and residents. Without the commitment of governments to the level of need, such places are potential white elephants. So the world is driving these profoundly learning disabled young people home with their families behind closed doors with criminally inadequate provision and it's for life, with crisis management in the end as aged parents who have had not much of a life, struggle to cope. It is a third world story. We desperately need to change that now and that night we pledged that we would! Just like world peace.

When I think of Muir and what he might have been my heart is absolutely broken. When I think of Muir and what our life might have been had he not been profoundly learning disabled my heart is in part broken. This life is a difficult burden for any family to bear and I say that with our other children in mind who will ultimately be the carers, at least I hope so - I don't think I want to out live our learning disabled son. At least for now. But part of me is pleased about the burden we bear because who else is there to fight the fight and make a difference on behalf of the profoundly learning disabled young adults other than their families? And in fighting that fight for Muir I am stunningly proud of him and all that the support he does get has enabled him to achieve.

Thank goodness for those 'world peace' moments. Maybe one day we will make a difference.

< ┬áReturn to blog

Commenting is now closed.