In this second instalment in our 'Siblings' blog series, Anne shares her story of growing up with her brother Nick, who has Fragile X Syndrome
In January this year (2021) I attended the Fragile X Society’s webinar with a speaker from the charity SIBs [the charity for brothers and sisters of disabled children]. It made me think back about my experience of growing up with my brother Nick who has Fragile X Syndrome.
Nick was born in 1957 and has just had his 64th birthday. He had balloons and cake in his care home in Slough where he has lived since 2006. I was able to speak to him by video call but this is the first time that we as a family have not been able to celebrate with him in person. The last time I was able to take him out was for his 63rd birthday. Since then, I have seen him twice for ½ hour in the garden of his home, wearing mask, gloves and plastic apron. In October I waved through the window (there was a case of COVID in the home).
Nick was my parents’ first child and my mother said they knew he was late reaching his milestones but they thought that he would catch up. I came along 19 months later and began to overtake him in terms of early development so, when Nick was 3 ½ years old, my parents took him to the GP who referred him to a paediatrician. This paediatrician announced that they had a “backward child” who would “never amount to much”. However, he did refer them on to Dr Gerald O’Gorman who specialised in “psychotic children”. Dr O’Gorman said he couldn’t do much but that my parents could visit him at Henley Hospital whenever they needed to. I believe this provided a lifeline for them in what was a very lonely position. Dr O’Gorman suggested that Nick was autistic. Nick certainly has many autistic traits but the label never seemed to fit completely. He also suggested that Nick be sent away to school but my parents refused and kept him at home. My father recalled having to sign a form to say that Nick was “ineducable”. Nick’s education was in Junior and Senior Training Centres run by the Health Service rather than in schools run by the Education Service. He didn’t even qualify for the ESN schools (schools for the Educationally Subnormal) which were in place at the time. My parents, like most parents of children with a learning disability at that time, really had very little support as Nick grew up – I remember a few check-ups but not more than that.
In the 1990s Nick began to experience some mobility problems and was referred for tests. The doctor recognised physical features associated with Fragile X Syndrome. He suggested Nick have a blood test and sure enough he had 200+ repeats on his X chromosome. My mother was identified as a carrier. My parents were delighted that at long last they had a scientific answer as to why Nick was the way he was and that they were not at fault. But it opened a Pandora’s box for me. I already had three children, a girl and two boys, and there was a possibility that I was a carrier too with all the implications for my children. Fortunately, all three of my children appeared to be developing normally and when my blood test came back it confirmed that I was not a carrier.
When Clare Kassa from SIBs spoke about how it felt to be the sibling of someone with a disability, it all rang so true! I remember especially as a teenager being crippled with embarrassment by my brother who made strange noises, flapped his hands and referred to me as “Underwear” in front of my friends. But I was also fiercely protective of him and felt guilty about feeling embarrassed. I never saw myself as a carer for Nick but as I got older, I minded him when my parents went out in the same way an older sibling might mind a younger sibling. I always worked hard at school and it was assumed I would do well. Was I trying to make up for Nick? Possibly. I’m ashamed to say that resentment kicked in most when I was an adult and I had my own children and my parents couldn’t help me out much because they still had Nick to look after. One thing I was very glad to learn is that SIBs run support groups for siblings. Growing up, I knew no other children who had a sibling with disabilities and I think it would have helped me to acknowledge, share and deal with my conflicting feelings.
My parents always said that they didn’t want me to feel that I had to look after Nick when they could no longer do so but then they proceeded to do nothing to plan for the future! There were no Education, Health and Care Plans then to ensure that Nick’s future was discussed. So, when we were in our thirties, I started to push them to take advantage of some of the respite care that was available at the time. Nick started to stay away overnight and for a few weekends and actually seemed to enjoy himself! When he was in his late forties, he began to stay at his current care home during the week and to come home at weekends. As my parents grew older and increasingly frail, he stayed full time and came home for visits. I gradually took over managing his benefits and liaising with the home and other professionals and since our parents passed away a few years ago I am his next of kin and advocate.
We have now reached the point where Nick’s needs are changing and I would like to move him nearer to where I live in Norfolk. Nick seems quite happy with this idea; his current care home and social worker are on board and I had started looking for a suitable home in our area. That was last February just before everything ground to an abrupt halt. Hopefully we can restart this soon. We would love to have Nick nearer so that we can see him frequently, take him out for coffee and pub lunches (my husband’s influence!) and so that he can meet the latest addition to his family – his great nephew.
"I often wonder whether, if Nick had been born now, with the increased knowledge about Fragile X Syndrome, if he had gone to a special school with teachers who knew successful ways of teaching non-verbal children and had knowledge about sensory difficulties – would he have been able to do more? Possibly he would speak more. He probably would have been happier at school. However he has certainly defied the prognosis of that first paediatrician! I hope Nick would still have been as pleased to see me when I visit and be the happy, gentle and kind man he is today."
Thank you, Anne, for sharing your story. If you have any stories that you would like to share with us, please get in touch. We'd love to hear from you!