Pippa Wyndham-Pearce shares daughter Chloe's story, and reflects on her growing confidence as she moves from her teens into young adulthood.
Chloe was diagnosed with fragile X when she was 13. She has a fully mutated gene .She is now 19, six foot tall and was in main stream school from 5. We always knew she was different from an early age. As a baby she did not sleep through the night until she was fourteen months old, but I now know this is quite common.
She has always been a bundle of huge energy and totally fearless, a pocket rocket. On a family holiday to Norfolk aged 4, on a very rainy day, as soon as she saw the sea she ran as fast as she could towards it whilst removing her clothes because she wanted to swim!! She always climbed the tallest tree and found the highest slide. She preferred swimming under the water than to on the top.
Since her diagnosis moments from the past have made more sense. Car journeys were a nightmare; she was always asking questions. We would answer, but she would ask the same question over and over. Now we tailor our answer in a way she will understand.
Her appetite is famous, but she will not eat bananas now as, in her words, she is “all banana’ed out as I ate so many as a baby”. When she ordered her first fillet steak, it had to be medium rare. She prides herself on her expensive taste as she enjoys all the expensive things on the menu.
Initially we never noticed any developmental delay. In fact she seemed to do things before her peers, walking at 10 months and potty trained at 18 months. It wasn’t until she went to primary school that we became aware that she was struggling with maths and science.
Chloe has been very fortunate with the schools she has attended as they have had fantastic support staff and teachers, who are dedicated to children with Special Educational Needs, although knowledge of fragile X is limited if it is there at all. I do feel schools need to be made aware of fragile X as a lot of children may be undiagnosed.
I was very much against getting a Statement of Special Educational Needs for Chloe as I thought, like a lot of parents, that I didn’t want her to be labeled. But then I finally realised how much more help Chloe would receive if she got a Statement and said yes. Her secondary school was very forward thinking and had collated all the information needed to apply for the Statement.
Coupled with the extensive information from Wendy at the Fragile X Society, backed up by the Society’s publications, we applied for the Statement in the June and it was granted in the October. The 18 hours of help made a huge difference. Also choosing assignment based options meant that Chloe left secondary school with a BTEC in Health and Social Care at merit grade (equivalent to 4 GCSE’s at B grade) and a B in ICT before her other exam results in August.
She went on to college to complete a 3 year Childcare course. At college she still received fantastic support. In her second year she was awarded a Jack Petchey award for achievement. At the awards ceremony she went into "melt down" as she didn't want to go on stage as it was too overwhelming... but she collected it!!
Her independence is immense and she will go to the cinema on her own catching a bus. We used to have large debates before hand into exactly which bus to take, what time the film started, and whether she would have enough money (something she still struggles with). Now she does this without thinking, and with immense confidence. She has perfected telling the time, however reading timetables is something we still need to perfect.
The family go to France a lot. Two years ago her elder sister wanted to stay at home. Chloe decided she didn't want to drive down with us in the car and said she would fly on her own. Not phased, she said "I will find the right gate Mum, if it's 88 I go past the cookie shop and if it's 44 I go past Pret a Manger, get my lunch on the way past as the food is too expensive on the plane, so don't worry.
Fragile X has its advantages! Chloe's bedroom is a joy to behold; everything in its place and so tidy. I am very quick to inform my friends about my teenager's tidy bedroom!
I will always have concerns for Chloe's future, as she gets older. I thought they would get less, however they become different challenges. Get Getting a job!! People, even if you try to explain the issues of a young lady with fragile X, still seem to have expectations of those without fragile X. But we have overcome this and she is working with children, something she enjoys. The thing that gives me the most joy is still having hugs and snuggling up on the sofa with Chloe when she says "I am a bit mummified at the moment and need a cuddle".
Written in 2012 and updated in 2014.
Thank you to Pippa for sharing Chloe's wonderful story!