Really this should be called part two, but who’s going to click on something called that (not this little ‘click bait’ junkie). Recently I wrote an article called ‘Whats wrong with her? And 10 other things you should never say to the parent of a child with Down syndrome’, if you haven’t read it you totally should before you continue. This post turned out to be crazy popular for a few weeks, with many websites running it, disability services and government agencies circulating it amongst their staff and a state wide newspaper running segments of it too. Tens of thousands came in contact with it and for the most part people were in favour of my writings, of course there were critics as there always are who thought I was a bit harsh. One thing I always knew was that this article needed to be balanced out with a few things of ‘what to say’ lets face it some of you haven’t had your eyes opened as I have in the last two years, so here’s the yin to the yang of diagnosis faux pas.
CONGRATULATIONS The number one thing every parent needs to hear when a child is born is congratulations, job well done, she is beautiful, isn’t he going to melt hearts, the list goes on! If you’re struggling with a diagnosis post birth all you want to hear is your child normalised, because the medical profession are doing everything but! Reassurance that your child is as perfect as the one in the next room is not too much to ask for. If a friend of yours has a prenatal diagnosis the above does not change, congratulations on your pregnancy (do you know how hard it is to fall pregnant these days, this person may have been trying for years), well done, no matter the outcome she will be perfect, he will change this world no matter the diagnosis. (This is not the time to bring out stories of every person with a diagnosis you’ve ever met, trust me it’s not).
SHARE EMOTION Its ok not to have the answers, its ok to be overcome by emotion, this is an emotional time. When I rang one of my best friends the day of Edens diagnosis she dropped everything drove 1.5 hours and sat and cried when I cried, when I asked endless questions she shrugged her shoulders, she didn’t have the answers she didn’t try to answer them, she just cried when I cried. (She also bought alcohol, if any time in life called for a stiff drink this was it).
YOU CAN DO THIS In a world where there’s so much uncertainty reassurance goes a long way. And at a time when I was struggling to finish a sentence, telling your nearest and dearest was an impossible task. Everyone was shocked for some there was a stunned silence but for one there was no hesitation; “you can do this, out of everyone I know, you can do this, I can’t imagine what you’re going through, but I know one thing, you can do this”. I knew I could do this too but to hear someone say it, have the utmost believe that I could actually do this, reassured me for months to come. As doubt would try and settle in I would hear her voice “you can do this, out of everyone you can do this”. (Be careful not to cliche this with the ‘God chooses special people’ routine, it will surely undo all your good work).
EXCUSE MY IGNORANCE This saying covers a multitude of sins along with ‘correct me if I’m wrong’ and ‘I’m not familiar with your situation/child’s diagnosis’. To precursor a statement with this means you’re willing to be educated, you’re ok with me correcting you and you’re interested in our life. You can pretty much ask anything after this (except ‘how long will she live for’…) without getting a face palm!
BODY LANGUAGE Your body language is a wealth of information! If you look at my child and I as you gasp and shake your head, I’m immediately going to think negatively. If you look and smile at us or even wave in response to Edens wave hello, I can breath easy, knowing there’s no judgement while feeling your inclusion for my daughter. This often leads to conversations in the checkout line and at the park. In saying that I’m not a hugely chatty person and sometimes a smile is where its left and that’s ok too.
Recently a mother asked me how she should interact with some parents of a child with special needs, they visit the same park as her. My response is “the same as you would interact with anyone else”. Normally conversations start around weather, children’s interesting behaviours, park facilities etc its no different with us. If you’re looking to interact with someone purely because their child has special needs maybe that’s the wrong motive?
During conversation I generally acknowledge Down syndrome at some point, this means I’m ready to go ‘there’. If I don’t bring it up, then guess what? I’m not! Maybe I’ve had a bad day, they happen. Maybe I’ve had some bad medical news, again… that happens! Maybe I’m doing all I can to hold my shit together, it happens! Maybe I’ve forgotten my child has a diagnosis, true story it happened!
If your interaction with me revolves around my child’s diagnosis, rethink it, ‘cos we have far more to offer than Ds, that’s such a small part of us. Just as your family is rich and diverse, talented and fun so is mine. Eden is Eden and Ds is only one part of her. Going to the park, playing on slides, reading books and eating sand are a few of her favourite things, eating veggies, being tidy and sitting still are a few of her least favourite things. I bet she has more in common with your kids than you think!
Here it is in short, see past the diagnosis, talk as if it doesn’t exist, when invited talk about it, but most of all SEE THE ABILITY!