‘Minstead Trust gives her a sense of independence, boosting her self-esteem. Where ordinarily I can’t let Agatha cross the road on her own, at Minstead Trust she is safe to experience some freedom, which adults without learning disabilities enjoy and take for granted’ says Agatha’s mother.
Agatha is 27 years old and lives in Bournemouth with her mother. Agatha attends Minstead Trust five days a week.
When Agatha was born her disability wasn’t obvious. After 18 months and at the insistence of her mother, Agatha was referred to Great Ormond Street Hospital, where she was diagnosed with Sotos Syndrome.
After 25 years, with advancements in science, it has now come to light that Agatha does not have Sotos Syndrome. To date, Agatha like many others, has no clear diagnosis, but she is at present under a research team at St. Georges Hospital, London, who will hopefully throw light upon what the future holds.
‘Agatha was a gorgeous baby’, says her Mother, ‘outwardly she looked no different to any other baby, although exceptionally long and with a head that was much larger than the norm (although not so obvious because of her Shirley Temple curls!). As she grew, and with rapid bone growth that was fast, it became apparent that her ability to meet normal milestones was severely impaired. Added to these difficulties, aged five Agatha developed Precocious Puberty, aged 10, she was diagnosed with Type 1 Diabetes and more recently she has developed an under active thyroid.’
Over the years, Agatha’s mother has experienced constant battles to ensure that Agatha has been placed in schools that fulfil all her needs. At times they encountered special schools that were not able to support Agatha.
‘Agatha is unique, as are all individuals’ says her mother, ‘outwardly looking like any other young person but with a variety of complex needs. It has at times been hard when others in the wider community, see a tall child, that outwardly looks like any other, but behaving in an unusual way (tantrums, spatial awareness) from those whose age they perceive her to be.’
When Agatha was 17, to continue her formal education, her mother made the decision to move from London to Bournemouth to access the appropriate school. After a further twp and a half years, it was time to find somewhere else for Agatha to go.
‘Agatha cannot work or live independently, and I do worry about what the future holds forher if I should no longer be here”
‘When I found Minstead Trust I knew it was the right place for Agatha. It has a wonderfully calm and happy atmosphere.
‘With her individual timetable, she learns practical skills through continuous embedded learning, essential for Agatha as she will learn certain tasks really well, but unless those tasks are reinforced on a regular basis she will lose those learnt skills. Skills such as literacy and numeracy in the stimulating environment that Minstead Trust provides.’
‘Agatha’s favourite activities are dance, drama, ceramics, – anything creative really. Agatha recently created a wonderful piece of artwork, but it took months to complete’ says her mother. ‘Moya, the art and craft instructor, allowed Agatha to work at her own pace, recognising when time out was needed! But in the end it was amazing! Agatha was so pleased with her work.’
‘I know that Agatha is safe at the Trust. It gives her a sense of freedom, but in a very safe and caring environment, which I have not found in any other day opportunities that I have visited.’
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