Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy


About Tagging Me in That Post…

October 22nd, 2015  | Advocacy  | Care  | HIE Education  | Special Needs  |  By KARISSA SHEPHERD


A few months ago, a post made the rounds about a boy with Cerebral Palsy completing a triathlon. What a wonderful achievement for that boy to complete such an intensely physical feat, seemingly against the odds! But with the sharing of that video, came the onslaught of beautiful, well-meaning friends who kept tagging me on that photo and sharing the video to my wall. Some even sent it to me in a private message.

There was probably a time when seeing such a video may have given me hope; that the possibilities for my own child with Cerebral Palsy were infinite. That despite the predictions for negative outcomes we may have heard, my child may still be able to achieve great things. But now, a few years down the road, we are comfortable with our child’s diagnosis and we know he will be able to reach his full potential, whatever that may be.

Which got me thinking…who gets to decide what his full potential is anyway?

Picture this: You’ve just bought your 5 year-old a new bike. Suddenly ten friends tag you in videos of a 5 year-old doing amazing BMX stunts.  If that 5 year-old can do it, then your kiddo can, too, right? After all, they are both 5 year-olds and they both have bikes!

What if you posted a video of your toddler pointing out pictures in a book, and then a bunch of friends sent you videos of children doing baby reading programs and reading actual words at 18 months-old?  Your baby could do that, too!!

Or what about a video of a child with red hair who is an amazing singer? Your child has red hair, so they could be just like this kid, right?!

How would you feel? How would you really feel? What if your 5 year-old has no interest in BMX and just wants to ride carefully along the footpath outside your house? What if your toddler is more interested in banging on pots and pans and that’s completely OK with you? What if your redhead hates music?

Imagine if friends started tagging you in posts like “30 year old Mother runs marathon!” Hey, you are a 30 year old mother aren’t you?! You could totally go and run a marathon if that mom did it! Or what if you are Asian, and all your friends tagged you in a post every time an Asian person was mentioned? Because, after all, every single Asian person is the same, right?

No they aren’t.  And neither are people with disabilities.

All children are individuals. Not every 5 year-old will want to do BMX, and not every red haired child will like singing. This includes children with Cerebral Palsy. They may have something in common with others, by sharing a diagnosis, but they are still individuals with unique interests, and unique strengths and weaknesses like any other child. I know you are trying to be encouraging when you share those stories with me. But before the boy who did the triathlon, there was the boy who ran a race at school and his entire class went and ran beside him. Or you saw a child on a current affairs program with Cerebral Palsy. These children are not my child, and may in fact have very little in common with my child. There is a huge range when it comes to how Cerebral Palsy can affect a person. Just because one child with Cerebral Palsy can do something, it doesn’t automatically mean another child can. Nor does it mean they will have any interest in doing so, because just like not all able bodied people are interested in doing triathlons, neither are all people with Cerebral Palsy.

And this doesn’t just happen to parents of children with Cerebral Palsy. I’m sure you have all seen cute videos being shared of children with their hearing aids being turned on for the first time. Well guess what?! The parents of children with hearing impairments get bombarded with those all the time. And those cute memes with children with Down Syndrome wearing a catchy slogan on their shirt? They aren’t immune either. The parents of kids with Down Syndrome see those all the time too.  We may choose to share videos or photos of children who share our child’s diagnosis from time to time to help raise awareness or because they have touched us in some way. But we honestly don’t need all our friends sharing them back. We are aware of our child’s condition and we love our child very much. We will encourage them to reach for the stars (or whatever else they want to reach for), because we believe in them.

We know you mean well, but please know this: If something amazing has happened in the world of Cerebral Palsy, I’ll know about it before you will. For now, please, look past my child’s diagnosis. See who he really is and what he is interested in. Don’t lump him in a box with others just because he shares a similar characteristic. And I won’t do it to you or your children either.



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