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| School: The tiny twins are starting at a mainstream school |
Every child is special, and
Jodi and Matt Parry know that even better than most parents. They are mum and
dad to identical twin girls, Abigail and Isobel, who also have Down’s syndrome
– the chances of which are two MILLION to one.
“Sorry”
The adorable four-year-olds were diagnosed with Down's syndrome three weeks
after their premature birth on 29th June 2011.
Parents, Matt and Jodi, admit they first thought this was "a life
sentence" - but now devote their lives to busting myths and misconceptions
around the genetic condition.
The first words the doctor said to them when they received the news were:
“I’m sorry”.
Mum, Jodi, says she was daunted when she heard her babies had Down's
syndrome but once they were born she realised they were no different.
Jodi says: “The day our twin girls were diagnosed with Down’s syndrome it
felt like a life sentence. That day, I didn’t feel like a mother. I just felt
lost and confused. I had bleak visions of the future. I thought we’d be carers
until we dropped dead”.
Two million to one
In the early days, when the twins were diagnosed, Matt and Jodi were
terrified that their family would never be the same again. For Jodi, this
destroyed her dreams of being a mum and in that instant, all she felt was grief
for the children she thought she would have.
Jodi says: “Having twins with Down’s syndrome is very rare – about two
million to one. But having a child with any learning disability is much more
common.
If there had been a bit more understanding and listening to us as parents,
then perhaps our distress would have been heard and someone could have directed
us to information that told us what to expect for our daughters’ futures, not
just scientific jargon about extra chromosomes!
To this day, I would love to ask that doctor, ‘what are you sorry for?’
There’s nothing to be sorry about, it’s just a different journey”.
Lack of support
Sadly, many families with a child who has a learning disability struggle to
get the right support at the right time. This reinforces the negative
stereotypes and fears that many people have about people with disabilities.
The doctor took us off the ward, into a bare, clinical side room with three
chairs and then uttered the words that have remained stamped on my memory: ‘I’m
sorry.’
Everything else he said that day is a blur, that ‘I’m sorry’, the first
words that came out of his mouth, is the thing that stayed with us.
We had so many questions. Would the girls walk? Would they talk? We knew
nothing about Down’s syndrome and left the hospital with no answers, no
information, just fear and dread.
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Support to
other parents
The family live in Lancashire and have three children – older brother
Finlay, seven, and twins Abigail and Isobel, nearly five years. Their family is
flourishing. And Jodi and Matt say they want to spread positive awareness and
provide support to other parents who may be feeling lost and confused.
So, Matt and Jodi launched the Twincess
Campaign to provide prospective or
new parents of children with Down's syndrome with frank, non-judgmental
advice.
They say looking after Abigail and Isobel is no more difficult than
bringing up Finlay, who does not have the condition.
On their Twincess
website the proud parents share pictures of their
daughters doing everything from football to pony riding to promote their
message of celebrating achievement.
Jodi said: "When I was told the girl's had Down's syndrome I was
devastated. I felt like someone had just ripped my heart out.
"But when the girls came home from hospital it soon became very
apparent that apart from a few extra appointments they were no different to
Finlay, it would maybe just take them a little longer to do things."
Abigail and Isobel have now begun half days at their local mainstream
primary school and have one teaching assistant supporting them both.
Although they can only speak a handful of words, their sign language
vocabulary is equivalent to a child of the same age's verbal vocabulary.
Matt added: "The challenges Abigail and Isobel have overcome and how
they just get on with it is amazing.
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| Opportunities: The girls' parents say it is about celebrating achievement |
"Our aim with setting up Twincess was to show the non-Down's Syndrome
community and people who have never been touched by Down's syndrome what people
who have the condition can do.
"It is all about celebrating achievement, rather than focussing on the
things they can't do."
Carol Boys, CEO of the Down's syndrome Association, said: "In the past
it was believed there were many things that children with Down's syndrome could
not do when in fact they had never been given the opportunity to try.
Myths and misconceptions
So, Matt and Jodi are devoting their lives to busting the myths and
misconceptions that surround Down’s syndrome.
Abigail and Isobel started at a mainstream
primary school last September, and their
mum is speaking out again this World Down’s Syndrome Day to say that they have
been a gift to her life. Jodi is determined to be there for other parents who
might have just received a diagnosis.
92% of children diagnosed with Down’s syndrome before birth are aborted.
Under the 1967 Abortion Act, abortion is legal up to birth for
disabilities including spina bifida, cleft palate and club foot, as well as
Down’s syndrome.
About School
Parents Matt and Jodi Parry did not think that Abigail and Isobel would be
able to go to a mainstream school.
Happily, it looks like teachers telling them apart will be the biggest
worry for them.
With new school uniforms and books, Abigail and Isobel began last
September, their first term at the same Chorley primary school as big brother
Finlay.
Matt said: "When the girls were born we did not know if they would be
able to go to a mainstream school.
"This just shows how far we have come in our own understanding of
Down's syndrome. We had misconceptions which a lot of people still have, and
that is what we are trying to tackle.
"In sending Abigail and Isobel to a mainstream school we have chosen
to push them to succeed as much as we can, but we are not blind to the fact
there are alternatives should they struggle."
"Children with Down's syndrome can and do learn alongside their peers
in their local mainstream primary school, despite the fact they may not learn
things as quickly as their classmates.
"Increasingly, they will move on with their classmates to a mainstream
secondary school and many will leave with qualifications and go on to further
education."
Photos: Dan Rowlands/Mercury Press
Sources: http://www.mirror.co.uk
You may also like:
- "DON'T LIMIT ME!"- Powerful message from Megan with Down Syndrome
- For Parents of Children with Down Syndrome
- Grandma, about the birth of grandson with Down Syndrome
- Down Syndrome (DS), or Trisomy 21
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