Monday, March 21, 2016

Doctor Said He Was “Sorry” My Adorable Identical Twins Had Down Syndrome, But I Wouldn’t Trade Them for Anything

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.


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.

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.
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


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