Fragile X syndrome: a parental account
| Published date | 15 July 2011 |
| DOI | https://doi.org/10.1108/20441281111165580 |
| Date | 15 July 2011 |
| Pages | 29-32 |
| Author | Lynne Zwink |
| Subject Matter | Health & social care,Learning & intellectual disabilities |
Fragile X syndrome: a parental account
Lynne Zwink
Abstract
Purpose – This paper presents the viewpoint of a parent of two children with Fragile X syndrome.
Design/methodology/approach – The paper presents the author’s views of her and her family’s
experience of Fragile X syndrome.
Findings – The paper provides the author’s perspective on the impact that the condition has had on
family life.
Originality/value – The paper provides a unique insight into the day-to-day experiences of a parent of
two children with Fragile X syndrome.
Keywords Fragile X, Parent view; Carers, Behavioural problems, Family
Paper type Viewpoint
I will never forget the moment Roger and I were told our son, Andrew, had Fragile X – the
tremendous shock and the feeling that I had lost Andrew. Yes, lost the child we thought we
had. It was devastating. Andrew was five years old and up until this moment his
paediatrician and the child assessment team had always assured us that Andrew’s speech
delay was a result of his chronic glue ear and his demanding behaviour was, by implication,
due to my poor parenting skills. ‘‘Firm consistent handling, Mrs Zwink’ ’ is what I was always
being told. And then, as if learning that Andrew had a syndrome was not bad enough news
for one day,we were told that Fragile X was genetic and inherited. So, well done mummy, you
are the carrier, you have given Andrew his Fragile X and you may have given it to your
daughter too. It seemed to me that the sword of Damocles was hovering over my family.
For the rest of the day, I avoided being with Andrew and Katherine because I knew if I was
close to them I would burst into tears and then I would have to explain why, and I did not
know what I could say to them as I was still grappling with the news myself. I think Roger was
feeling the same as, while I kept myself alone and busy in the kitchen, he busied himself in
the garden away from the rest of us. Roger was working away from home at the time and
during the evening he had to drive back to where he worked, 100 miles away. We would not
see him again for a fortnight. Some time during the following week I wrote to him and said
that I would understand if he wanted to leave us.
I do not think I have experienced a more despairing moment in my life. But it was not tolast for
long. Andrew saw to that. The next day when I went to collect him from school he came running
out all smiles as usual and I could only smile back at my mischievous but adorable son. Then,
whacking me with his bag as he ran passed, he called out ‘‘What’s for tea’’. Andrew quite
literally jolted me back into reality.He was telling me hewas still here and he needed me. And
if I was going to help him I was going to have to get my wits around Fragile X, and soon.
So come on now, mummy,pull yourself together. Let’s get going.
This was 1987 and there did not appear to be any information available about Fragile X except
for almost incomprehensible genetic papers! These we had been given bya friend working in
DOI 10.1108/20441281111165580 VOL. 5 NO. 4 2011, pp. 29-32, QEmerald Group Publishing Limited, ISSN 2044-1282
j
ADVANCES IN MENTALHEALTH AND INTELLECTUAL DISABILITIES
j
PAGE 29
Lynne Zwink, UK.
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