Jaimee aged 24 years and Andrea Lee chatted one night about many parts of her life she wanted to share with other young girls and women living with fragile X syndrome. This is an edited version of their conversation.
Jaimee found out she had fragile X when she was around 9 years old. Jaimee explained she didn’t really understand what fragile X was, but knew her younger brother Bradley had it and it was why she was often anxious. Jaimee said “I’ve struggled with anxiety my whole life, but counselling has really helped”. She explained it also affected her speech and that she hated speaking at school and particularly making speeches as she knew she wasn’t good at it. Speech language therapy helped a bit but Jaimee explained that school was hard for her and she didn’t have a Teacher’s Aide (TA) at school. Jaimee said “most of the time I was thinking what are they on about and getting frustrated when I didn’t understand what was being explained to the class. I was too shy to say I don’t understand.”
With the help of her mum and a counsellor Jaimee learnt to understand the way that she learnt best and how to share that with teachers. Jaimee explained “I had to learn to tell the teachers that I am a concrete thinker and I need clear instructions to get it”. Her advice to other young women still at school or tertiary study is “don’t let the teacher try and teach you a certain way if you don’t understand it. Tell them how you learn and how you need it explained.” Jaimee went on to say “ask questions and try not to be scared to ask your teachers questions. And know that the teacher isn’t going to laugh at you”. Asking questions was really important in year 12 and year 13 at school particularly.
Jaimee again talked about how important counselling had been for her to learn to understand herself and work out how to deal with things. She said she has learned to use music to calm down when she is feeling anxious. Jaimee also shared that she had extra tutoring in Maths and English between Year 7 and Year 13 which helped too.
When Jaimee left school she went to Polytech and got a certificate because she knew she wanted to study more but wasn’t sure what. She looked into a Degree in Design and met with the Head of the Design department. They suggested she work part-time towards the degree but Jaimee decided she wanted to study full-time. She said “people will tell you what you can’t do but you can do anything you put your mind to!”. Jaimee graduated with a Bachelor in Design Communication at the end of 2017 after 3 years of full time study. She is now working at Southern Colour Print in Dunedin. She also works as a contractor developing website part time including the new FXNZ website.
Jaimee reflected on the things she’d like other young women affected by fragile X to know. She said “yes you have fragile X, but it’s not who you are. Don’t let it define you. It’s just a part of you.” Jaimee advised others to always tell their parents if people picked on them. She reflected on her friendships and said “it doesn’t matter how many friends you have, it’s the good ones that count. My good friend Kim has never treated me differently, didn’t treat me like I have a disability.”
Jaimee has a partner whose name is Craig. They met through snowboarding. She said relationships have been hard over the years as she has had to learn to understand her feelings.
Thanks Jaimee for sharing your story with others. There are some great pearls of wisdom in your thoughts and reflections and we appreciate you sharing. Together we are stronger and together we support each other learning to live the fragile X way ?