Yesterday was a day that I think covered all of Jude’s behaviours, emotions and attitudes plus several (sadly) typical behaviours, emotions and attitudes from people around us.
First off, at the supermarket. Jude was being weird, not naughty or anything, just doing some of his odd stuff which I can see beyond but often grabs the attention of people around us. A lady was staring at Jude and as a consequence, her two children were looking as well. We were just choosing some fruit together, Jude was bobbing up and down on the spot and they were stood about 5 metres away watching us. I ignored them at first but after they moved on around the aisle but continued to stare, something snapped in my head. “Ignore them, ignore them,” my brain was saying however sadly, my mouth didn’t listen to my brain on this occasion. I know I should just continue with what I am doing and that the thoughts of strangers really means nothing to us but I struggle with this. It bothers me that one day Jude will realise people stare at him and I think the protective Mother Bear in me comes out to defend him at times. I wasn’t rude (I would have been a few years ago but manage to contain it now), I just held her stare and asked her what she was looking at. I think I stunned her into realising what she was actually doing as her response was to appear very flustered and promptly tell her children to “come on, we have lots to get still.”
So, do people not realise what they are doing? I’m pretty sure I’d make the conscious decision to openly gawking at people, it’s not really something you can do accidentally. Why do people think this is acceptable? And what was she thinking?
This is one of the reasons people with disabled children find every day activities such as going to the supermarket so stressful. Other people’s attitudes towards them. I’ve encountered some fantastic people in supermarkets so I don’t want you to think my view of general society towards Jude is entirely negative. I remember a lady at one supermarket checkout who let Jude come round and scan all the items because he was so fascinated in the beeping noise it made each time something passed in front of the machine. There was the time Jude kept putting food from the fruit and vegetable section into a ladies trolley (we were going at the same pace around each aisle so she was stuck with us!) but instead of getting annoyed, she instead embraced this crazy little (then) six year old boy and gave him objects to go and find for her. People like this make us feel part of society and I’m always truly grateful for their acceptance and civility.
The gawky stary ones make us (me) feel like freaks. That’s not a nice feeling and is one of the reasons parents of disabled children regularly avoid social interaction and thus experience ongoing isolation. Vicious circle. It’s the unknown of who you will meet when out and about.
Slightly worse than the starers are the ones who give you “advice” but thankfully for me (and subsequently them!) we did not meet today.
So when collecting Elsa from orchestra yesterday, Jude (unusually for him) wanted to get out of the car and come and wait for his sister with all the other parents/siblings. Cue a sudden rush of mum anxiety. There was a large group of parents waiting by the entrance and all the other siblings were either just standing still next to them or playing games with one another in the small entrance area. Jude chose neither of these options. Jude chose to talk. And talk and talk and talk…and typically for Jude, it was incredibly repetitive. “Whats for dinner mummy?” “Can we have pizza?” “Can I see granny?” “Where’s Elsa?”
Repeat each 30 times.
I could see people trying to sneak a glance at Jude as subtly as they could manage. I’m kind of over this sort of thing now, it still makes me feel like we’re in a spotlight on stage but after 10 years I’m more able to just carry on talking to Jude and pretend they aren’t there. I know they mean no harm and that it’s human nature to look at things that are a bit different but I hope that if they knew how it makes us feel, they’d not treat us like this and make us feel as if we’re aliens.
People just see the disability in Jude when we’re out and about. They don’t see the witty, fun side to him that he expresses only to those he trusts. For example, last night…in celebration of Emmeline going to sleep relatively quickly, we sat down to have an ice lolly together. Jude had a head start on me so when I came into the couch with my brand new lolly, he looked at it for a while and then said “Do you want to swap lollies mummy?” “Errr no thanks Jude” I replied so he laughed and said “nice try.”