Monday, 13 July 2015

How to cope with not being invisible

I have started to describe Owen as a Lamborghini.  He must be.  Everyone stops to stare at Lamborghini’s and other fancy cars. After all you don’t see them every day do you? They are so rare and special you can’t help but notice them.  That’s Owen, he’s rare and special and people can’t help but notice him.  So he is a Lamborghini.

I'm the type of person who likes to blend in, not be the centre of attention.  So I've had to get used to the fact everyone remembers Owen and therefore me. This is not all bad.  The majority of people are lovely, asking how he is when he isn't with me.  Offering assistance if they can.  People often go out of their way to help Owen and I.  For that I am grateful.

When we go to the shops we get lots of stares and looks from the people who do not know us.  Let’s put the Lamborghini, oops Owen, into perspective.  He’s different, you don’t see kids like him every day.  He has a killer smile, makes loud (and at times unexpected) noises, doesn't play with age appropriate toys and is in a wheelchair.  Kids (OK adults too) are often curious, they can see  he is big (he is a tall 8) but developmentally he is a baby and they want to know why he isn't like them.  Some circle for another look. Some nearly run into posts as they aren't looking at where they are going (Ok maybe a couple of times, on a bad day, I’ve been secretly disappointed they haven’t).   I'm lucky Owen isn't bothered by it.  I can’t imagine how hard it would be if he was uncomfortable and I know that is a sad, hard fact for some families. 

I find most people aren't trying to be rude they just don’t know what to do or say when they come across kids like Owen.   How do I handle it? Do I ignore it?  Sometimes yes but for the most part I use a gentle approach and educate them.  I thought I would share how I handle things in case it helps you work out your own tactics.  Getting a handle on it makes outings so much more enjoyable and doable.  If your reading this and you don’t have a special needs child, maybe you can encourage your child to say hello if you notice them staring.
                                                                                           
With children I try and catch the eye of the child and smile at them.  If they are in front of me in the queue or circling us at the park,  I tell them they can say hello if they want and that he likes that.  I also explain that although he won’t say hello back he is listening to them.  I make sure the parent sees me and is aware of the conversation.  Most of them will take the cue  and encourage their kids to say hello to Owen.    If kids ask questions, I don’t take it as them being rude, I take it as an opportunity to help them understand kids like Owen.  I answer their questions with basic answers.  Some common ones are:
  • Why is he in the wheelchair?  His legs don’t work very well and he can’t walk yet.
  • Will he walk one day?  We hope so, he is trying to learn.
  • Why is he still a baby?  His brain is a little bit different and doesn't work as well as yours and mine.
  • Why?  Sometimes these things just happen, he was just made/born differently
  • Will he talk?  We don’t know but he already lets us know what he wants.  I can tell he likes you and is listening to you.
  • Can he see?  Yes, but not like you, his eyes work differently. Even though he isn't looking straight at you he is watching.
  • I might also say, he loves other children and listening to them talk or watching them play.


It’s not just the kids that stare, adults do sometimes too.  They tend to be more subtle than kids.  They don’t circle us at the playground or run into posts ;-).  Again, I try and catch their eye and smile at them.  If they ask questions I answer them.  Sometimes with more detail.  Sometimes it might be a quick answer and move on quickly.  Some of them really suffer from foot in mouth disease.  Since I am not immune and have also suffered from its effects, I try and focus on what it was they were trying to convey rather than their words.

What should you do? It’s up to you and what you feel up to doing and what your child can handle.  Good luck.



                

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