inside the shell

“If you have to judge people, judge them based on what they can do, not on what they cannot.  Judge them based on who they are, not who they aren’t.  Otherwise, you’re judging based on your own shortcomings.”
— Anonymous

I have been reading a lot this week about disabilities in kids, and one common theme… no matter the ‘disability’ there is a mind beneath the shell that understands, feels and hopes and dreams. The more we move into the digital age the more we are learning about the inner workings of the mind and the amazing things that are happening there. On 60 minutes this past Sunday they did a show about Steve Jobs and as a segment to the show they talked about how the ipad is now being used to help kids speak using apps. They are discovering a whole variety of talents and feelings and thoughts that have for years been locked behind the wall of autism or other ‘disabilities’.

The whole discussion has made me think really hard about the concept of communicating, and how those who cannot put words to their thoughts are thought of as ‘less’ or ‘stupid’. If a person from China comes to Canada for the first time with no english and cannot speak english people tend to talk loudly to them, or assume that they are stupid because they can’t communicate to them. As ‘communicators’ we think of ourselves as above those who cannot communicate.

I remember the fear I felt when I arrived in Austria, the terror that someone would try to speak to me in German, knowing that I couldn’t understand them, or talk to them. It got worse when I did understand them and still couldn’t put together a grammatically correct sentence to save my life. I knew what I wanted to say, I had opinions and sometimes words of advice, but because I could not properly communicate I was disregarded. Is it not the same thing for a child who cannot talk?

I have been guilty of this myself, I assume Josh won’t know something because he can’t speak, I tend to do more for him because he can’t communicate to me that he can do it. I am shocked when he says something that makes me realize that he remembers something or knows something that I wouldn’t have dreamed he knew. At times I have actually asked Tim ‘how did he know that?’, as if in some way he is stupid because he can’t put words to his thoughts.

Do I wish with all my heart that Josh could talk to me the way that other kids talk to their parents? Do I wish he could go to the play ground and play with the other kids normally without fear that they might try to talk to him? Do I wish he didn’t struggle so much with forming words and certainly sentences? Of course, but have I overlooked his mind? Have I overlooked his thoughts and feelings, subconsciously thinking he was ‘less’? God forgive me but I have.

Published by lauriehaughton

Author & Photographer

2 thoughts on “inside the shell

  1. I am guilty of this as well. Too often I assume that because Amy isn't contributing to a conversation that she is not part of it. I have moments that absolutely floor me when she'll mimic something that I said or did when I thought she wasn't paying attention. For instance, whenever I drop the kids off at daycare I say 'have a great day' and suddenly, one day last week out of the clear blue, she turned to me and said 'Mommy, you have great day too' (which was the longest sentence she's ever said). I realize that part of it is repetition, but she added the 'mommy' and the 'too' and she doesn't generally use pronouns, let alone in a sentence! It means that what I said held meaning for her and she gave it enough thought to work out an appropriate response.I also have many 'how did she know that?' moments. When Amy's speech was assessed, it was determined that her receptive language skills are above average for her age, and that only her expressive language skills were well below. I forget about this too often, and I wonder how it must be for her when I am the one to respond to a question that she is asked or have to explain her speech delays in front of her as though she isn't there. I wonder what it's like for her to see kids her size (or smaller as she's tall for her age) speaking in long, clear sentences. Or how it feels for her when thoughtless (albeit probably well meaning) people make comments such as 'How old is she? She looks big, but acts younger' or 'She's almost 3? Doesn't talk much, does she?'. Although don't get me started on comments that people make. I also wish she could use her words to communicate with us or other children and I know that in doing so that I have underestimated her abilities. It's far too easy to assume that she can't understand and carry on a conversation in front of her (sometimes a conversation that is about her). I'll admit, when she is having a day with less than stellar behaviour, I will rant about it to my husband when he gets home even if she is within earshot. Not my finest mommy moments (and I wonder why she gets frustrated?). This is something that I'm beginning to recognize and must stop doing.Wow, long winded response. Sorry.As an aside, has Josh used any ipad apps? I have not used any with Amy, but after reading all of the articles that I have this past week, I'm reconsidering…

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  2. I get it… I do the same things. Tim will walk in and ask how my day was and I will say 'Josh was a monster, he is in a terrible mood…' and he's right there, listening to every single word that I say and who knows what he is thinking of himself. Argh… sickens me! I have so much to learn about being a Mum but more about dealing with Josh and his specific issues. I have loads of apps for Josh, he loves the ipad and uses a lot of the words ones (I haven't gotten the really expensive ones and I doubt I will, I think with Josh it would hinder him more than help because he can speak, it just takes longer. Some of the apps are for kids who can't talk at all and they actually allow the child to communicate for the first time). Go to the app store and search out apps for toddlers, educational apps and stuff. Josh now knows his letters, colors and numbers and is matching and hopefully soon he'll be in the beginning stages of reading. It's an amazing tool for them and it holds their attention in ways that books or toys doesn't. I sit with him and we play together and talk through the stuff he's doing.

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