It’s their loss….

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.

Every week Wade and I have lunch with my nan after we go and visit my pop at the nursing home. We go to the same place every week and the staff there know us. They know nan because her and pop have been going there for many many years but they also know Wade.

I’m used to Wade being made a fuss of. He is very cute and adorable. Sometimes when we are out and about, strangers will lay on the attention just a little bit too thick though….like they think I need a little bit more encouragement just to get through the day.

It usually makes me uncomfortable because
a) I don’t….and
b) it is usually less about me and more about that person not knowing how to act so they err on the side of Super Excited About All Things Down Syndrome!!!!

This just doesn’t happen here at our restaurant. The staff here are genuine. They truly and sincerely love Wade for who he is. Down syndrome has nothing to do with it….just the way I like it. Wade will wander through the front doors waving to everyone and high-five-ing. He runs down the hallway to the bistro pointing to people along the way. He gets to the entrance and sometimes has a little dance with the man who plays the organ. He has his favourite staff members and is completely shameless in showing it as he runs up to them and leaps into their arms. It fills me with complete joy because this is the Wade that I know and I love that everyone gets to see it.

The other day however, while we were having lunch I saw a woman on the next table watching us. She came up later to chat to us. I can’t remember why, I don’t think she knew my nan….although nan knows almost everyone in this area. As she was chatting, I could see her looking sideways at Wade. Her and nan were talking about schools or something but I really wasn’t listening because I was fascinated by what was happening with Wade and the body language. Wade usually draws people in somehow but this woman was standing side on to him, turning and tilting her head occasionally to observe him as though he was a monkey at the zoo. I could feel her watching him…waiting for him to do ‘something‘. Wade was reaching out to touch her clothes but he wasn’t really engaging with her. I could feel a real barrier between them.

It was only when nan proudly introduced him that she turned to engage with him.

“Such happy children”, she said coldly which made be bristle. Then she followed it up by looking me in the eye and said, “But they can be hard work”

Out of respect for nan, I greatly resisted the urge to unleash my inner banshee all up in her grill and opted for the trite, facetious response of….
“Well THEY’RE not all the same though are THEY” while my eyes said something along the lines of “bleep you, bleeping bleeper-bleeper!!”

She soon left and within seconds, one of the staff, (who is also one of Wade’s all time favourite people!) swept in to take him off for a play after lunch. Wade changed in an instant. His demeanour, the energy around him and his expression instantly changed once he saw her. He was back to the little bean I know.

The change was subtle, hardly perceptible but it dawned on me. It’s not Murphy’s Law at all. It actually IS someone’s loss if they don’t see Wade for who he is because he will not be who he is until they are comfortable with him. He saves the good stuff for the people who get it. Of course there are times when he is just grumpy or flat or not in the mood….he’s two!….and this is not a hard and fast rule by any means but I have felt this shift a few times in the past without identifying what it may mean.

I keep coming back to this theme of expectation but it keeps appearing everywhere in my world at the moment and this is just another example. When we see someone through a veil of low expectation we are clouding what we see. We can’t see beyond it and it is easy to find things that support our prejudices.

But the veil works both ways….

I know myself, that I don’t spend extra effort engaging with someone who has decided I am not worth it before I have even opened my mouth. I think everyone knows what that feels like. It would be the same for Wade. He is less likely to connect, interact or communicate with someone who has thrown a big wall in front of him.

I get a kick out of the idea that Wade is the one working out who is genuine and who is worthy of his attention! Not the other way round. I love that there is this shining, precious light that he doesn’t bother showing people who wouldn’t appreciate its beauty anyway. So I will sit back and relax a bit more now comfortable in the knowledge that if someone is waiting for Wade to prove himself to them, they might wait a very long time.

Their loss will be someone else’s gain.

Because that light really is beautiful and when people drop the veil they are lucky enough to see what I see every single day.



6 thoughts on “It’s their loss….

  1. I am reading a book called parenting for down syndrome 101 and the author talks about this type of reaction. It has some great real life stories like this one x

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