Lyn Pearse’s Story
When Johnny was 8 or 9 years old he was diagnosed with Fragile X syndrome. At the same time it was discovered that my mother was a carrier. At the time of Johnny’s diagnosis not much was known about Fragile X syndrome and nobody in our family had ever heard of the condition. My grandparents, and the rest of the family, found the diagnosis very difficult to accept. It was a taboo topic of conversation within our family and one that was surrounded by shame of the disability it had caused in Johnny.
Johnny is 10 years younger than me and having a younger brother with a disability impacted on my childhood in both good ways and bad. I remember the early years of Johnny’s life to be fraught with sickness and he was in and out of hospital. My mother became Johnny’s full time carer. The majority of her time was taken up with the care of Johnny so me and my sisters became independent and self sufficient from a very young age. I was often responsible for Johnny as well and so I naturally became a more mature and grown up child than most of my peers.
My sisters and I always adored Johnny. On outings where people stared or treated Johnny in a way that was not acceptable we used to get really cross and feel very protective of our younger brother. Being Johnny’s sister was often challenging but I was fiercely proud of him.
I like to think exposure to these feelings and situations so early in life has given me a nature that is compassionate and patient and accepting of all others and for that I am incredibly thankful.
When I started my own family I was so afraid of passing on the gene to my children and was so relieved when testing while in utero showed that my babies were clear of Fragile X.
Mum is in her 80’s now and I am fearful of the future, a future for Johnny in which his mother and therefore the central pillar of his world is no longer available.
Our family is close, we share time with my brother often and I try to help Mum as much as I can. However I have my own family and a grandchild to help care for and enjoy and I am not sure I would be able to cope taking Johnny into my home as a full time carer.
Johnny is now in his late 40s and we have had a worrying time recently as he was having a lot of behavioral issues so we rang the Fragile X Association for help. They arranged for Johnny to see Dr Jane Law who was amazing; she knew just how to handle John and he was on his very best behaviour. The Clinic was great and very helpful; Dr Law gave us some tips for getting through to the Ageing, Disability Home care for them to get the ball rolling for John’s accommodation. I will follow her advice and I hope that we can get some short term respite for Mum and John and down the track, some nice accommodation for him. This has been all very stressful for the whole family as we love John very much and don’t like to see him upset.
We are looking into other solutions for Johnny’s long term care but I worry about Johnny’s ability to adjust to a new environment and how the family will cope with this upheaval and feeling of guilt if he is at all unhappy in the short and long term.
My family are grateful to the Fragile X Association for their help, especially Janie, who is the counsellor there, she comes out to Mum’s house to talk with Johnny and Mum once a month and this has really helped. Johnny talks about Janie all the time, he tells me that he loves the time he spends with her and the special talks they have about everything. Janie has made a big difference in John’s life, especially now that our Mum is ageing, we will need all the help we can get in the future.