Date posted: March 18, 2013

Amy – A Grandmother’s Story

By Joy Elsen, grandmother of Amy Hill who has Down’s syndrome. Joy is a retired secondary schoolteacher and lives in Pontypool South Wales.

On the 7 August 2004, when I was told that my newly born granddaughter Amy had Down’s syndrome, lots of things seemed to go through my head within seconds. How would my daughter and son-in-law cope? How would it affect her two older brothers? Most of all what would happen to her in later years when her mother and father were not around to look after her. However, together with the initial heartbreak and worry was the feeling of great love for this little baby who, through no fault of her own, was born with a disability that would affect her for the rest of her life.

We were fortunate that Amy had no health problems other than low muscle tone. As a retired teacher I decided I could help by ensuring Amy received the very best education available. So in turn Amy could become the best she could be. Therefore, with my daughter and son in law’s permission, I have been attending to all the administration of educational affairs concerning Amy. When Amy was eighteen months old, amongst opposition from the local authority, I initiated a Statement of Educational needs in preparation for her to attend nursery school when she became three years of age. After twelve months and many consultations, when plans and objections on both sides were discussed, the Statement was successfully and amicably produced. Amy went to nursery when she was just three. As she was so young when she started it was decided unanimously that it would benefit Amy to keep her in nursery for an extra year.

Amy is now aged seven and attends the local Primary school where she is happy and settled in year two and has lots of friends. The staff are fantastic and she is making good progress although her speech is very slow when it comes to speaking in sentences. However, we are hopeful that this will improve in time. She has a qualified one to one assistant with her throughout the time she is in school which is fully funded by our Local Education Authority. She also has the services of the National Health Service Trust Speech and Language Department together with an input from the local Special Educational Needs school who in conjunction with the Primary school assist with her Individual Education Plan and the monitoring of her progress.

However, what I have been through over the years in order to get Amy’s education to this point is unbelievable. I cannot count the number of meetings I have attended, telephone conversations I’ve had, letters (including a letter to PM David Cameron) and reports I have written together with the hours I have spent on the internet searching for information. It has become a full time job; just when I think everything is running smoothly a problem crops up. The 1996 Education Act relating to Special Educational Needs, The Special Educational Needs Code of Practice, The Royal College of Speech and Language Therapist’s Guidelines for Families – you name it and I’ve probably read it! When a child has special needs you have to be one step ahead of the educational system because unfortunately you are continually fighting authority to ensure that you obtain everything you possibly can to give your child a good start in life.

Amy - A Grandmother’s StoryWhat of the future? Amy’s parents review her position in mainstream school each year and as long as she is happy and making progress she will stay there. However, when she gets to secondary school age they might consider a place in our local special school where she can learn life skills. It all depends on Amy’s educational progress and where she will be happiest. Her parents are also looking ahead to when she becomes an adult. She may be able to live in our local community during the week under the Supported Living Scheme and spend her weekends at home; again it all depends on Amy’s capabilities and whether she wants to live independently. It would break her parent’s hearts to let her go but they have to consider not only Amy’s future after their days but they don’t want their sons to have the full responsibility of looking after Amy when they are gone. It will also give Amy’s parents peace of mind to know that she would be independent, settled and happy in her supported home should she eventually be there full time. They also have plans to set up a Discretionary Trust Fund in her brother’s names so that when the time comes they can oversee her finances. Her brothers absolutely adore her so we know that they will always make sure that she is being well looked after. From our initial feelings when Amy was born, of panic, despair and uncertainty, we have turned everything around into a positive outlook; things may or may not work out as we have planned, however, we no longer spend our lives worrying too much about the future but enjoy our lives together as a happy family.

Amy is growing up into a well behaved, fun loving, delightful little girl with a ‘wicked’ sense of humour and a beautiful smile that lights up any room that she enters. She loves days out, holidays, and eating out, she swims and belongs to a local dancing school where she took part in their annual show and, hopefully, she will join the local Brownies in September. She is a treasured member of our loving, caring family and we all feel truly blessed that we have been given this wonderful little girl who has enriched our lives with so much fun, love and happiness.

Joy Elsen

First printed in the Journal of the Down’s Syndrome Association UK Spring/Summer 2013 and reproduced with permission – www.downs-syndrome.org.uk

If you are a Grandparent and have a story you would like to share with us, please contact Deidre Clements on 01277 363316 or at downsyndromee21@aol.com.

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