A Brighter Future for Alex
Following recent news stories about an increase in the number of
mothers who continue with their pregnancies after a positive test for
Down’s Syndrome in their unborn children Seán Kelly met Paola
Nono, mother of Alex, an 18-month old boy with Down’s Syndrome.
She told Seán about what she decided and why.
A Bright Future For Alex
Following recent news stories about an increase in the number of
mothers who continue with their pregnancies after a positive test for
Down’s Syndrome in their unborn children Seán Kelly met Paola
Nono, mother of Alex, an 18-month old boy with Down’s Syndrome.
She told Seán about what she decided and why.
The weather was still cold when I headed out to Ealing in West
London to meet Paola Nono and her son Alex. Paola is Italian by
birth and Alex is her first child. Between them they give me a
grand welcome to their home. Paola is charming and friendly
while young Alex has a smile which is frankly irresistible.
Paola became pregnant relatively late in life. Having lived a single life
for nearly 40 years she met James and married him two years later.
Initially, Paola was not concerned whether or not she had a child –
her view was “If it happens it happens, if it doesn’t it doesn’t. That’s
been my attitude to life; you just take what you’re dealt with”.
A little while later she did become pregnant. She says she and James
did have an idea that there would be an increased risk but she was
more concerned that she might miscarry and that this would be her
last chance rather than she might have a child with a disability.
However, they decided to have the tests because if there was
something they would rather know.
The news from the hospital came by ’phone when Paola was alone at
home. “They told me it was positive.
Someone you don’t know who says, ‘I’m sorry but it’s bad news’.”
She believes that this could have been handled better. “I don’t know
why they do that. This is one thing they should change. They could
pick up the phone and say ‘come in’.”
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Her husband came back from work. She says, “That was the difficult
time, telling people”. They went back to the Foetal Care Unit at the
hospital and saw a counsellor. Paola says things improved from then
on. Perhaps this was partly because, at an early stage, Paola felt
clear about what she wanted. “I guess it’s maternal instinct, I don’t
know, but something had kicked in, maybe it’s the shock reaction..
but suddenly I was feeling, okay, alright, it’s Down’s Syndrome. So
what?
It sounds like an almost absurd reaction. I remember thinking Down’s
Syndrome is not really a disability.. you know you think of all the
worst things that could happen in life. Really I just felt this was my
baby and there was no way I was going to part with him”.
Though Paola had found her own certainty it did not come so swiftly
for her husband. “The problem suddenly was that James and I were
no longer feeling the same way. He couldn’t understand my reaction
any more than I could understand his. For a few weeks we were both
in shock. You obviously react to it in different ways. My reaction was,
‘I don’t care. Okay, Downs’ Syndrome, we’ll live with it, we’ll cope.”
James needed a more rational approach. Paola says, “He was
whirring – what will it be like when Alex goes to school? Would he be
able to find a job?”
Paola and James were helped by the Down’s Syndrome Association
to meet a family with a six year old girl with Down’s Syndrome. This
reassured James that things were not as dire as he had feared; the
family had a fairly normal life. “Then you start talking to people.
Someone said, ‘Oh, we’ve got a friend who adopted a girl with
Down’s Syndrome and she’s 18 now and a brilliant gymnast’. Another
said, ‘My wife works at the library of a college and there’s lots of
people with Down’s Syndrome there and they’re all doing well’.”
Paola and James met more families but perhaps in a way the
decision came down to Paola’s determination to see through
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whatever life gave her. She says that, for example, some parents
have to cope with their children having leukaemia. “No one wants to
have a child with leukaemia but if it happens there is not much you
can do about it. I’d rather have a happy child with Down’s Syndrome
than an unhappy child without”.
So they went ahead with the pregnancy and Alex was born. Paola
says she has only had positive reactions, from family, from friends
and even on the street. She thinks this may be because she and her
friends are, in English terms, middle class, but then she is quick to
point out that, where she lives, it is very mixed. “The neighbours have
been absolutely wonderful.
Everybody adores him”. Paola’s approach is to tell people that Alex
has Down’s Syndrome. “Otherwise”, she says, “they won’t know
what’s going on”. She is aware of the danger of ‘carrying a flag’ but
says, “If you are open there is nothing to hide. If you are comfortable
you can put people at ease and they can be comfortable as well”.
We speculate together on whether attitudes have improved. Paola
believes they have and that they will continue to do so, thanks to
children with Down’s Syndrome being included in mainstream
schools. “That should help. If you went to school with someone with
Down’s Syndrome you would know what it’s like”.
She feels that, as a mature mother, perhaps she is better able to
cope. “I didn’t feel ‘why me?’, I felt ‘why not me?’ I am sure we can
cope. If anybody can cope we should be able to. We have got the
time, we have got the resources, we can help him”.
One unexpected source of support was that an unusually high
number of children with Down’s Syndrome were born in about three
months in Ealing. There were eight in all. The health visitor and a
worker from Contacta-Family helped to set up a support group. Not
all the families wanted to be involved but five still meet regularly. It
provides a different peer group for Alex and also gives Paola a
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different way to judge his development. The families support each
other and Paola sees it as a blessing. “The children are gorgeous”.
She hopes that Alex will keep some of the children from the support
group as friends as he grows up. Paola is positive about the future. “I
wouldn’t say there aren’t problems but I am positive about the future.
I don’t spend my days thinking this or that could go wrong. I firmly
believe there is a place in Society for people with Down’s Syndrome”.
Seán Kelly is publisher of Community Living and Chief Executive of
the Elfrida Society.
Community Living - Vol 22 No.4