There’s sometimes a big difference between how Wade acts when he is at home and when he is out in public. I’m certain this is not unique, in fact I’m sure this is true for children everywhere. I understand why….he is comfortable at home. Home is familiar and it is where he is safe and happy. Same for all kids I imagine.
The problem is, being out and about is the perfect opportunity to change some attitudes about what Down syndrome is. Don’t get me wrong, I don’t run up to unsuspecting people and dangle my child in front of their eyeballs saying “Look! Isn’t he amazing???” I don’t set out of my house on a “hearts and minds” mission every time I go shopping but if the opportunity arises, I like to take advantage of it.
So, even though I know I shouldn’t, I can’t help feeling a little disappointed when Wade doesn’t act like Wade when I want him to. It’s always the way….I find myself with someone who is looking at Wade as though they need convincing of his worth in this world. I sit there hoping that he will turn on the charm offensive transforming this skeptical onlooker with a bout of impromptu giggles and waves. Maybe dazzle them with series of signs and gestures extolling the wonders of the world around him. Instead, he often sits silently ignoring me…and them…. throws something on the floor or something else that confirms every stereotype this onlooker suspects about us.
I shouldn’t feel this way and I’m not proud of it. It’s not up to Wade to prove his place in this world. He can act like a brat if he wants to or stare out the window without worrying if he is going to undermine the entire global Down syndrome advocacy movement but I would be lying if I said it doesn’t annoy me just a little bit.
The first thought that comes to mind after an encounter like this is a sort of self-appeasing mantra that I say a lot.
“Oh well…their loss”
I say it because deep down I know he is awesome and they just missed out on seeing it. I thought it was just Murphy’s Law but something happened this week that made me realise Wade knows more about people than I do sometimes.
….and maybe, there might be more to it than I thought. Continue reading
This happened a week ago but I wanted to wait before publishing. I always prefer the tone of a piece written at the time so I am going to leave it in the present tense.
I nearly ran over a toddler today. It was one of those moments that you play over and over in your mind. So much happened in a single second and the more I think about it, the more I realise how removed and separate I was from it all. Thinking about it with hindsight, I wonder how much of what happened was dumb luck, or a little bit of everything I ever learned about anything leaping forward from my sub-conscious to save this tiny little dot.
I was driving along a 4 lane road in an area that usually has some pretty dodgy drivers around. I drive this road a lot and have had to share it with some diabolical road users in my time so I usually keep some idea of where other cars are around me. Up ahead I saw a police car that had pulled over a driver on the other side of the road. The lights were flashing and whenever I see this, I try not not see it. From my time in the police force, I know that one of the worst places on the road for a bingle is right next to a police car with its lights flashing because everyone rubber-necks! They slow down and turn their heads to see what all the excitement is about and often it ends up in a rear-ender. I drew level with the police car and then….
There is something magical about Wade’s eyes. From the moment he fixed his eyes onto mine, on the day he was born, I have been drowning in those pools of wisdom. He says more with his eyes than he can with gestures and speech. Without a doubt, I love those crystal blue eyes more than anything so I was very worried when at about 9 months old, I noticed that his eyes weren’t tracking together. It would only happen for a second or two but it was there. Luckily Wade’s uncle and aunt who are both optometrists were staying with us not long after it started happening and recommended that we see an ophthalmologist.
We booked in and the ophthalmologist examined his eyes through this binocular type device and identified that he is very long sighted. She explained that when the eyes look long distance they should be at rest but if you are long sighted, they struggle to focus causing eye strain and fatigue which can cause one eye to drop inwards. This is known as Accommodative Esotropia and is quite common with people with Down Syndrome due to the low muscle tone. Low muscle tone is best described as the muscles having to work harder than normal to achieve the same outcome. Like walking in water or walking uphill. It is not the same as muscle strength. Therefore, if you are long sighted and your eye muscles are straining to focus, they work even harder if you have low tone which causes the weaker eye to give up and eventually it can drop inwards permanently if left untreated. This can mean eye surgery or permanent vision impairment. Continue reading
Before I start telling the story of my 20 week scan, I want to tell the story of what happens when I take Wade out in public. Today I went for breakfast at Marios’ in Fitzroy, where I used to work. If you want to know what the world looks like when everyone is smiling and happy….push a pram with Wade in it. Walking along the street with my happy bundle in his blue glasses who makes eye contact with almost everyone he sees, turns complete strangers into a gooey mess. Almost everyone smiles, some people comment, a few ask questions about the glasses, children giggle at him. Trying to walk along or do the shopping usually results in me having a few conversations with complete strangers, which is lovely. I sat in the front window and sat Wade on the bench so he can look out the window. Watching people’s faces light up as they walked past the window and lay eyes on him and smile, makes me realise how many days he brightened, if only for a minute.
There’s a language warning on this one because sometimes “golly gosh darn it” doesn’t convey the gravity of the situation!
The time between my 12 week and 20 week scan was spent mostly searching forums on the Internet trying to find examples of when test results meant nothing. I would swing wildly between positions of being completely at ease with the possibility of the baby having Down Syndrome then completely in denial about it. These things happen to other people and all that. Continue reading