Just over 11 years ago I was working in a special school in North London. A colleague I had job shared with came to me and said “Wendy, I have found the ideal job for you. It is even based in Great Dunmow.” And so it all began!!!
I read the advert for the first paid position of Family Support Worker at The Fragile X Society. The application form and letter took me ages; I was so keen to get it right. The application went in; the interview followed. Then came the call offering me the job. I was absolutely delighted and petrified at the same time. There were things I knew, but lots I had to learn as well!
A while later I started, and everybody was so kind and helpful. I was trained by an amazing lady called Lynne Zwink, who many of you will know. Her knowledge about Fragile X was (and still is) boundless. I cannot thank her enough for the time she spent with me and for her support then and ever since. Until I started Lynne ran the helpline as a volunteer, having taken over from Lesley Walker. I know many of you called them when you first got a diagnosis and I know how much help and support they gave families. Sheila Ashe also took calls about adults with Fragile X at the time. It was lovely to meet her and other families when I visited the Surrey Support group in my first year at the Society.
I have had a fantastic 11 years and never enjoyed a job as much. It has been a joy to work with all the families, who have contacted me and I would like to thank them all for their kindness and inspiration. You all do a fantastic job, often in very difficult circumstances. It has been wonderful to speak to you all and especially lovely to meet many of you at conferences and at The Thomley weekends. I also owe a huge debt to the society’s professional advisors. I have no medical background and Science has never been my strong point so a big thank you to Professor Jeremy Turk, Dr Andy Stanfield and Dr Angela Barnicoat amongst others for their help and support and answering my (often stupid) questions. On a positive note for them, I bet I sent the easiest emails to answer!!! I must also thank Becky for being a great boss to work for, the present team of directors and those that have served in the past, the team here in Dunmow and Sandra up in Scotland for all your help and support. It is hard to single out anyone in particular, but I do have to just this once. I must pay particular tribute to my friend and colleague, Jane Oliver. Without her experience and support, I would have struggled to do the job on many occasions.
Finally, I would like to end by trying to summarise the 4 main things that I end up emailing or talking about in many enquiries. The strategies are not an easy fix for everything, but they do help to keep anxiety levels down for children with Fragile X and that will impact in a positive way on children’s anxiety levels and ability to learn.
Visual timetables can be really helpful for use at home and school to let children know what is going to happen. Most individuals with fragile X like to be able to predict what is going to happen and manage changes to normal routines better if they are prepared for them. You can use objects of reference, pictures or symbols to create visual timetables, but it is important to take off each symbol as an activity is finished to give closure.
Lots of individuals with fragile X find sequential processing or doing things in the right order really difficult. Visual schedules can be a really good way of helping them remember the order in which to dress, use the toilet or whatever.
3. Managing Sensory Overload
Many individuals with fragile X have problems with sensory processing or managing the wealth of information being transmitted to their brain through their senses. Some will get input from an occupational therapist (OT), but many will not. These are just a few suggestions that have helped some families: It can help if children have a known quiet place to escape to when things get too much. This could be their bedroom or maybe something like a pop-up tent. If possible, when you are out visiting, it can help to establish a safe place in that environment. Ear defenders can help if children are noise sensitive Supermarkets are very busy places. I know many families avoid taking their children as it is just too distressing. A good tip I once got was to head for the kitchen rolls and give your child a double pack to squidge. I know another mum who would take her child outside to bounce up and down for a few moments. I know lots of children with Fragile X find jumping calming and many families have found a small trampoline, or trampette, key in helping manage their children.
4. Social Stories
Social stories can be a good way of talking through a new experience or helping someone to think of a better way to manage a situation. For those with fragile X they are best written in the third person or using their name.
Please do keep contacting the Society for information and support. I am leaving you in extremely capable hands. Caroline, the new Families’ and Professionals’ Advisor for children (firstname.lastname@example.org) will be working alongside side me for a while before I retire at the end of December. She is a lovely lady with immense experience of supporting families caring for children with a learning disability and I wish her all the best in her new post.
All that remains is to say goodbye and to wish the families, staff and directors at The Fragile X Society all the very best. Happy Christmas and all good wishes for 2019!