Thursday, 3 October 2013

#DSAM 2013-Does she look bothered?


I'm republishing this post as part of the blog hop for Down Syndrome Awareness Month 2013 over at the wonderful Downs Side Up, a fantastic website hosted by the lovely Hayley and the real star of the show, her daughter Natty. The blog hop is there to help educate and inform people about Down syndrome and hopefully to show them that it's a difference they should embrace not fear. People with Down syndrome have more in common with you than you think!Head on over to check out other inspiring and myth busting stories and keep up to date on Twitter by using for the hashtag #DSAM
When Róisín was born, her diagnosis of Down syndrome was immediate.
It was a huge shock and I went to a dark place where my daughter had no future. 
If there are two things our shallow, fickle society love, it's  good looks and intelligence. 
If you don’t have one, you sure as hell better have the other. Now I had a child who, 
by society’s cruel standards, had neither. When you have a new baby, the possibilities for this 
tiny human creature seem endless. You could be nestling a being who will one day grow up to be President, nursing a future pop sensation or teenage pin up, cuddling a little head within which lies the cure for cancer.With the birth of a baby with Down syndrome, suddenly all these wonderful doors of opportunity start slamming in your face. 
All I wanted was a future where my daughter could come to me with exclamations as fantastic as ‘Hey Mam, I wanna be a doctor’ or ‘I’ve decided I’m going to be a rocket scientist’ and believe that there was an actual possibility she could be either of those things.
The hospital staff were sympathetic. For the two days I stayed in hospital after Róisín’s birth, 
there were many comments of ‘It must have been an awful shock’, ‘I’m sorry’ and ‘Had you no idea?’. 
These all added to my hurt and cemented the thought in my head that this was a truly terrible thing that had happened to my child.
I was on a downward spiral of negativity.
I worried that she would have limited independence and would have to live with 
us for the rest of her life.
I worried that she would not have the mental faculty to learn another language and pictured 
her isolated from her French family whenever we would go on trips to my partner’s home country.
Most of all I worried that society would reject her and she would lead a lonely, miserable life.
My partner would have none of it. He is the quintessential glass half full kind of guy and as soon as Róisín got the all clear health wise and left the hospital, he was planning her future in earnest and making sure we had all available resources to give her the best possible start in life. One of the things that resonated with me was something he would repeat often in the early days after the diagnosis and that was ‘Does she look bothered?’
Now, this may seem like a stupid question – what could a newborn possibly be bothered about 
other than having a shitty nappy or wondering when the next nipple, synthetic or real, 
would be thrust into her tiny gob, but I knew what he meant. Róisín didn’t know she had 
Down syndrome. For her this was normal.
Before Róisín was born, what I knew about Down syndrome could have fitted on the 
tiniest of postage stamps, but now I know a lot more.
I know that it is a genetic mutation, 
which occurs randomly at the time of conception, hence there is no blame to be assigned on either part of the parents.
I know that people with Down syndrome are living more active, fulfilling lives now than at any other time in human history. 
I know ‘I’m sorry’ is not the best response to give parents when they tell you that 
their child has been diagnosed with it. What those parents need, be they family or friends, 
is to be supported, but also for their loved ones to celebrate this new little person in the same way they would any other baby.
There was a documentary on TG4 a few months back which featured people with 
Down syndrome, one of whom coincidentally is also called Róisín. It filmed her starting 
a course in the university here in Galway. Here was a pleasant, confident, well-spoken young woman who had a job she enjoyed and was embarking on that most exciting of adult milestones – entry into third level education. 
And she spoke fluent Irish to boot.
And last week, little Seb garnered much media attention. He’s four years old and loves 
Woody from Toy Story. He’s a model for Marks and Spencer. He also happens to 
have Down syndrome. It’s important to remember that people with Down syndrome 
have the syndrome; that syndrome does not define who they are. 
It’s just one more characteristic, like having green eyes or a love of Marmite.
During the recent Paralympic Games, in London, it was hoped that one of the more positive results of the Games would be a softening of the mindset of the general public towards those with disabilities. This hope was fulfilled by many viewers commenting on how they got so caught up in the sports that they noticed the athlete first, the 
disability second. Slowly but surely, attitudes are changing and maybe we’re not too far away from the day when it won’t be a big deal when a child or an adult with a learning or physical disability does something most of the rest of us take for granted.
Róisín is now 18 months and while most other kids her age are running about 
the place with cheeky toothy grins, chatting away about mama, dada and shoe-shoes to 
anyone who’ll listen, she is still only crawling with no discernible words yet to emerge from 
her gummy mouth. Every morning, however, she tells me she wants the light switched on in
her bedroom and instructs me as to whether she wants another helping of dinner using
Irish Sign Language. 
It’s development that’s not quite on the ‘normal’ scale, but on a different one. 
Does she look bothered? Not one little bit and as for the rest of us, we shouldn’t either.





6 comments:

  1. Wonderful post, I shared so many of those first early worries. Now look at us! Thank you for linking to Downs Side Up for #DSAM2013
    H x

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    1. Yes-it's some journey we've been on. Thank you for hosting this wonderful idea. x

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  2. Great post and what a little beauty!

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  3. I to have a child with downs. I had him @ 18 when the doctor came in to tell me of his possible condition soon after giving birth I thought my world was over , not knowing anything about it only what every person out there thinks there is no future for a child with Downs I was scared to death. I questioned and beat myself up thinking I had done something wrong during my pregnancy. I soon found myself being surrounded by many supporters. Soon I relized having him gave me a new unique experience, not every one gets to ha
    ve someone so special touch their life. It is a blessing having him and not everyone understands what that really means til it happens to you and your family. Austin is now almost 16 in December and is on the A honor roll for the last 3 years. He is in the National Honor Roll Year book in the 10th grade and has a full scholarship to college when he graduates. Whoo Hoo go Austin!!!!

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    1. Thanks so much for sharing your story. Austin sounds like an amazing role model for my little girl. Wishing him all the success in the world!x

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