A MAJOR ADJUSTMENT

Within a week of our daughter Sarah being born, a little over 26 years ago, my wife, Alison and I received a letter from Ken Hixon, a Hollywood screenwriter and a friend of a friend. This missive was to have a profound effect in coming to terms with the reality that our baby had Down’s syndrome. Here is an extract.

‘I am the father of Lilian Hixon, who happens to be one of my most noteworthy accomplishments. Lily is eight years old, a girl of extraordinary will, affection, humour and beauty, and lower on the list with her other vital statistics would be the notation ‘Down syndrome’. Lily is utterly unique, one of the most original people I’ve ever met… my wife, Melanie, and I rose, somewhat wobbly, to the challenge at hand. Not without pain nor tears, not without insecurities and confusion… I do get depressed. I am anxious at times, but most of the time, the overwhelming majority of the time, I am just in love with Lily. I would be lost without her.’

We were both incredibly moved by the letter from a man we had never met – not just the beautifully written content, but by the efficiency (pre-internet) with which the network had begun to spread the news. Lily, a complete stranger 6,000 miles away, had entered our lives in the same way that our own daughter had done a few days earlier. At that time, we were given no assurances that Sarah would be able to walk, talk or how long she might live.Was it really possible that she could achieve what Lily had achieved in only eight years? Could Sarah become a similar character – an individual, full of potential and with her own unique personality?

Ken’s message gave us hope – he and his wife had faced the very same situation eight years previously, and had not only survived the ordeal, but were now in love with their daughter. This ‘letter from America’ also demonstrated that our reaction to Sarah was not unique or parochial. There were other parents, the world over, who were probably experiencing similar feelings. We were already immersed in global community and one which continues to sustain us.

This universal support is exemplified by the 13th World Down Syndrome Congress, which takes place in Glasgow between 25th-27th July. Sarah and I are delighted to have been given the opportunity to address the Congress, which will be attended by hundreds of people with Down’s syndrome and their families, as well as healthcare practitioners, education professionals and experts at the forefront of research.

Attending the event will be a marvellous opportunity for people with Down’s syndrome to meet others in a similar situation and for their families to share experiences, hear about the latest research and best practice related to the condition, and to celebrate the milestones and achievements through presentations, performances and exhibitions.

Looking back, our fears about Sarah’s future were unfounded. We have been lucky. She received wonderful support at mainstream school, graduated from Foxes Academy, a training hotel in Somerset and she is now employed as a waitress at a hotel in central London, following an appearance on the Channel 4 reality television show, Kitchen Impossible with Michel Roux Jr.

Sarah loves her work, which she describes as ‘My dream job’, an experience unfairly denied to the vast majority of adults in her situation. There is much research to show the positive aspects employees with a disability can bring to the workplace. Sarah is hard-working and reliable and is valued as an equal member of a busy team. She takes great pride in being able to contribute to society.

We have come a long way from the days when babies with Down’s syndrome were written off at birth, children were denied a legal education and both children and adults were deprived of some medical interventions. Of course, there is much to be done: in England, iniquitous spending cuts are causing untold distress, a postcode lottery still exists in terms of resources, but Sarah’s generation is the first to be given a chance to make its mark. There is now the opportunity of a life fulfilled.

I look forward to meeting as many parents and professionals at the Congress and hearing experiences of the Down’s syndrome community from all over the world. And if you hear the phrase, ‘I Love My Life!’ ringing out (Sarah’s oft-repeated phrase) – that might well be her speaking – although it might also be the life-affirming view of a number of the attendees, who have Down’s syndrome.

Andy Merriman, author of A Major Adjustment, How a Remarkable Child Became a Remarkable Adult, published by Safe Haven Books.

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