Monday, 21 March 2016

It's #DownSyndromeDay, Parent Shares Experience Raising his Special Child

photo credit:


On World Down Syndrome Day Greg Jericho writes about his daughter, Emma, pictured.

 When my daughter was born I never thought I’d be able to see past her syndrome, but for her entire life she has defied my expectations

The lights, the lateness of the night (well past her bedtime) and the noise, all combined for a massive dose of stage fright. When the performance started, Emma began to cry, slumped to the stage floor and was clearly distressed.
My wife sprinted to the back of the stage to get her – literally having to drag Emma off the stage.
And while I felt the anguish of any parent seeing his daughter so visibly upset, I must also confess to feeling frustrated that Emma had lost the chance to show the audience that her DS was no barrier. I worried as well that there would be those who – out of kindness – would have wondered if it was asking a bit much for a nine-year-old with DS to go on stage and perform.
I thought again of these events while watching the excellent video, produced for World Down Syndrome Day, “How Do You See Me?”
The video perfectly captures how it is tough for people to see past the obvious signs of a person with DS and to see the individual.
Even for a parent this can be tough.
Certainly when Emma was born I was sure I’d never be able to see past the DS. I feared in those first tear-filled days that I’d forever look at her and think, “There is my daughter, Emma Down Syndrome Jericho”.
Such fears were gone quickly – indeed in the first week after her birth while she lay in the humidicrib in the neonatal intensive care unit, I couldn’t get my head around the diagnosis because in my eyes she looked perfect.
And of course like any parent, I continue to think that. But while I now only see Emma, I know others see her DS first.

I understand why they do, and it is why I think I love showing her off in public – whether it be in a school dance or just at the local shops where she follows me as I buy the groceries.
Due to the ignorance I had of Down syndrome when she was born, I want her to be able to show others how much she can do – so that they will not be as scared as I was when, nearly 10 years ago, Emma came into my life.
But of course the public view is only part of the story.
I won’t lie: being Emma’s parent is not easy. There are many simple things she can’t do that most nine-year-olds can with ease, and there are some things that she will likely never do.
Unlike the actress in the video made for World Down Syndrome Day, AnnaRose, or the fabulous Lauren Potter, who appears on the TV Show Glee!, Emma’s vocabulary is very limited. It means even her telling us about her day goes little beyond a reply of “Great day!”, or “No” when I ask if her day was good.
She is nearly 10 and is yet to speak a complete sentence to me. She can however sing along to every song in Frozen (and do the dance steps of course).
She also understands much more than she can say. She certainly understands enough to know that my dad jokes deserve a contemptuous and exasperated cry of “Daaaaaad!”
But she may never grasp something as abstract as a graph, let alone understand what I write.
Then again, she might.

Her entire life she has defied my expectations – slowly, yes – two steps forward one step back, most certainly, but consistently across many aspects of her life Emma has shown that she gets there in the end.
It’s easy when looking at someone with DS to lower the expectations down to nought. Part of my learning as Emma’s father has been to let her be the judge of what she can (or wants to) do.
It also involves reassessing just what is important.
I have known enough parents who have had to deal with tragedy to know that whether or not she’ll be able to read the Jane Austen novel after which she was named is pretty irrelevant. The fact Emma is healthy and that she still reaches out her hand for mine when walking to school, means I am very lucky.
But still, like all parents, I want my daughter to show off her best – that’s why I was disappointed that night last year that the other parents of her school had not seen just how good Emma is at dance.
And so the next day when I picked up Emma from her class it was joyous when parents and teacher aides came up to me to rave about Emma’s performance. For you see, they had not gone to the night session, but to the matinee.
And she had absolutely nailed it.
Culled : theguardian.com