I was so proud when the authors of my most respected blog, Special Needs Jungle, asked me to contribute a regular column to their site. This is the site I always refer to when I want to understand issues about statementing, education or changes in SEN law. Tania and Debs really know their stuff and are movers and shakers in the political arena of SEN.
For my first column I thought I might focus on what Down’s Syndrome isn’t.
And what it is.
Posters and leaflets dispelling common myths and setting out facts about Down’s Syndrome are often created wonderfully by charities to distribute to new families. So rather than reinventing the wheel, I thought I’d highlight a few insensitive comments that had been said to me over the years, discuss the myths going on behind them and set a few truths straight. I always find the first of anything difficult to write and this time I wanted to gain the interest of the audience and encourage them to discuss their own experiences of the topic at hand.
I guess writing for someone else felt liberating, because I found myself being a little more outspoken than I usually am on my own blog and the response has been overwhelming, with so many from all over the world throwing similar experiences into the ring.
Special Needs Jungle site here.
Of course, once it was published I thought of many more incidences that I should have included, such as the time I was standing in a queue taking Mia into Pre-school. A mother in her 40s was in front of me, heavily pregnant with her 5th child. I asked how she was feeling and she replied,
"I've demanded all the tests, I wouldn't have time for one like that."
as she stared down at baby Natty in a pushchair.
That kind of comment leaves you in stunned silence and gets blocked from your mind over time. My answer of course should have been that if you don't have time for a baby like Natty, then you don't have time for a baby at all.
How do you deal with insensitive comments about your child?
I'm chuckling because I've just signed up for your email feed and my captcha was "afredi" - quite close enough to "a freddie" to make me think your blog is telling me we should be friends :)
Looking forward to getting to know you as we said we should :)
A sign indeed Merry. Thank you for popping by.Delete
First of all, I read your blog on NoahsDad.com last night and loved it. Thank you for sharing.
We have had many things said to our little angel over the past 4 years and honestly they just hurt every time. We have learned how to handle them much better, but they still sting.
The worst was by my own family. (I thought I would NEVER have to deal with something said from my own family) Our, at the time, 7 year old nephew asked a pointed question. He is a caring, unfiltered boy whose curiosity gets the best of him sometimes. He wasn't meaning any harm and is one of the most loving boys I have ever known, but this hurt. It opened our eyes to many realities though and we have learned from it as well.
He wanted to ride with his new cousin Fayth and he was the lucky one out of the 8 other cousins. Fayth was only 6 months old and this was the first time we got to visit the rest of the family since Fayth was born. He asked us as I was driving, "Will Fayth always look dumb like that?" WE FROZE. I collected myself from disbelief. My wife sat there with tears rolling down her face. He was asking in regard to her protruding tongue. We talked it through and I taught him some life lessons for the rest of the car ride home. The world was teaching him (it was not from my brother and sister-in-law for sure) that someone who sticks their tongues out involuntarily is "dumb." We corrected that. We later shared with our whole family, especially the kids about Fayth and DS.
We have had some rough points in our life with Fayth, but all of them have been a blessing. Blessings are not always easy to process though. My family continually raves about their "Fayth." And we continue on the learning path, but sometimes it just gets bumpy.
Dear Jared, how lovely to hear from you and your wonderful family. Yes, the most painful comments can come from close quarters, and they neddn't becessarily be so shocking to sting. I recall our eldest taking about when she and Natty become Mummies one day, and my heart froze. We learn so much as we go along, as you say even the tough patches that bring the grey hairs and the furrowed brows make us better people.Delete
Do stay in touch across the miles.
Love to you all