Whether it be genuine care, curiosity, slip of the tongue or just bad taste, some might be amazed by the questions we have been asked and comments that have been made since Leo's birth.
Recently the ABC aired a show , "You Can't Ask That " featuring adults with Down syndrome which made us laugh, smile, cry and cringe, it made us think about some of the recent conversations we've had to endure.
Both of us consider ourselves as honest and open people and no matter how intrusive or offensive people's questions are, we keep saying "ask us questions", we might know or not know the answer, but trust us, our answers will be honest.
A few common conversational themes seem to emerge when people realise that we are open to talking about Leo's Down syndrome and the number one question is "didn't you get tested?".
I am a logical person, I need to know facts so I can understand why people invariably ask this question, but as time has passed and over and over again I repeat the same answer, I wonder if people's perceptions would change if I simply said "No"?
Would they blame me or think "well you could have avoided this?"
As I continue to ponder if I should change my answer, I continue to respond the same way...
"No", yes that's right...No! I wasn't "tested", I was "screened" and I was deemed low chance so no additional tests were recommended, I was only thirty three years of age and my screening results were 1:5107. Therefore, 'Low Chance'.
Did you notice that I said 'Low Chance'? I'm not often offended but becoming a Ds mum you start to learn more and I do take mild offence to the word "risk". Risk is defined as "a situation exposing someone to danger", Leo is a 5kg baby, his nappies are the only dangerous thing about him!
So although my medical records state "low risk", I consciously say I was deemed "low chance" and so being low chance I was willing to run the gauntlet...that gauntlet gave us Leo!
So the prenatal screening / testing question is almost always broached during medical appointments, I've come to expect to have this question at each new appointment.
Recently I got asked it twice during the same appointment, by the doctor and radiographer, I provided my standard response not expecting medical professionals to comment.
Doctor: "That's disappointing for you that they didn't detect it".
Radiographer: "OMG he has Ds and you didn't know! I was so paranoid when I was pregnant that my child would have Ds I got a colleague to scan me again and as soon as my baby was born I checked his hands for the crease (a key Ds marker), luckily he was fine".
So, unsure and a bit taken back I just 'gringed' (half grin half cringed) and settled for a moment's awkward silence, obviously Leo is a baby but I do wonder as he gets older will the same comments be made in his presence?
Some questions are quite easy to answer, like "How long did you take to accept the diagnosis?" Answer, a day,! I just pushed him out, that was hard enough I couldn't put him back (and wouldn't want to), it is what it is, he picked us.
Some don't hold back the hard questions and I can't tell you how many times I've been asked "If you found prenatal would you have terminated?" Well this is a whole blog topic by itself I might write at some point, but the honest and short answer is while it's easy for someone to answer hypothetically, I was never in this situation, honestly I breezed through the pregnancy so never had to give it a thought, I'm not about to enter an ethical debate over a person individuals choice.
"How often do you cry about him having Ds?" Um .. never?! I'm not emotionless, sure initially there were many tears in the first few days, but I got some good advice, which was, know why you are crying, cry when he does something amazing, don't cry for something you can't change. So when he started to smile and laugh instantly my eyes welled up with pure parental happiness.
Other questions I find peculiar, for example "Are you sure he "has it"? This too was asked by a doctor, followed by "I see a lot of Ds kids your child is quite good looking", thanks for the compliment but somewhat shallow and offensive. Anyways unsure why I would lie about my child having Ds, my standard response is "Yes, I paid $700 for the genetic testing, he has it".
Rod and I both tend to be sarcastic or try find humour in situations and with some of the questions posed to us we have found humour is the easiest way to answer, so when we're are asked "Which side of the family does the Ds come from?" or "When did he get it?" We take pleasure in responding with "conception was that good we created an extra chromosome".
In the age of technology and information, I am somewhat bemused & amused when I'm asked "Was it something you did during your pregnancy to cause it?" I often jokingly say "Yes I ate sushi which had an extra chromosome in it". C'mon people we google what Kim Kardashian ate for breakfast, do me a favour and google 'What is Down Syndrome?' so no family who has a Ds member has to answer these mindless questions when we could be talking about the really good stuff!
On the flip side there are things people don't comment about, which I admit does make me sad. When Emmy was born right up until now, people always comment, "Gee she is the splitting image of you Nomes" or "Look at those eyes, big eyes like her dad".
Well after Leo was born no one ever commented on who he resembled, he was about ten weeks old and I caught up with some work colleagues for lunch a team mate meeting him for the first time instantly said "Wow he looks just like you, I see Emmy in him" I wanted to give him a hug I was so excited that finally someone had finally said this!
Obviously Leo has Ds characteristics and maybe people don't comment as they think they might offend us if they say he looks like us, but guess what genetically he can't escape it, and Leo looks like Rod and Rod isn't offended if you say his son looks like him!
So as parents of a newborn, we aren't having the standard poop and sleep conversations and this is just a glimpse into the questions and comments we have faced. We are fully aware that as parents of a child with Ds who want to advocate for inclusion and awareness we will have to be open and encourage people to ask questions, so if the filter in your brain is saying "you can't ask that ", we are saying ask it ,because what you don't ask you wont know.