Fragile X Awareness Day. Edel, her story

Today is Fragile X Awareness Day, Ross, the son of Cornerstone's Chief Executive, Edel Harris, has Fragile X. This is the most common form of inherited learning disability estimating to impact 1 in 4000 males and 1 in 6000 females.  Very often it remains undiagnosed, or misdiagnosed as autism, and is misunderstood by many professionals. Below Edel shares her story.

My son was diagnosed with fragile X syndrome when he was 5 years old.  The early discussions we had with our GP painted quite a bleak picture - "he won't be able to tie his shoelaces," "he won't be able to ride a bike," "as an adult he may require institutional living." 

Working in the field of social services myself, I often see the very real challenges presented when older men with a disability, usually in their 40s or 50s, suddenly lose their parents and have to cope with a sudden and un-planned move out of the family home where they have lived and been cared for all their life.  We didn't want our son to face this situation and decided to plan a transition from living with us in the family home to him living in supported accommodation in the community. 

The move was very gradual.  We began with some initial visits and tried to get our son interested and involved in choosing his furniture.  Then he spent a few hours in the flat during the day a couple of times a week with his support workers, preparing and eating a meal. 

For his 21st birthday we bought him a Man Utd TV for the flat that provided a great incentive for him to want to spend more time there. 

He stayed overnight one night a week, then two and gradually we increased the number of nights he spent away from home.  He now lives in the flat all the time and with support he is managing to do so many things that we never thought possible. 

He enjoys a very full and active life that includes three ‘voluntary' jobs; two days at college; he is a member of the local swimming club and trains with them once a week; he regularly goes to watch football and enjoys a social life with his brother. 

As his mum and his main carer, I have found the ‘moving on' process quite painful.  When we were in the middle of planning the move I was so caught up with the practicalities that I hadn't taken time to think about the emotional impact this major step would have on the family, especially me. 

The house is so quiet.  I am at home on my own for periods of time and although it is liberating and relaxing (and I get to choose the TV channel!) I still find coming home to an empty house quite distressing. 

We no longer have to go to bed when our son is ready to go to bed; we no longer have to eat when he is hungry; we no longer have to creep quietly downstairs in the morning for fear of waking him up.  We no longer have him charging into our bedroom at the weekends and getting into bed beside us and we no longer have the constant joy of his company. 

It is not that I miss him; we see him almost every day. It is simply that I no longer play that most important of all roles - being the person who is responsible for his wellbeing and happiness. As a mother what more could I want than to see my children fly the nest and make their own way in the world, enjoying a quality of life we all aspire to. 

When I look at my son, coping with his disability and living such a full rich life, with the support of others, I'm really very proud of him (and if I'm honest I'm a little bit proud of myself too!)

 

 

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