I'm a tad bit bitter over this subject simply because I go through this at EVERY doctor appointment, every meeting, every new nurse, new therapists etc.
Please do not assume that my child has been like this his whole life.
One of the most frustrating situations is having to relive and explain over and over again that your child was perfectly healthy up until 3 months ago. That 3 months ago he was running around playing sports, doing well in school, talking up a storm. I'm still adjusting to the new him, the new us, this new life. Some people don't even know that it was a cardiac arrest that caused his brain injury, then having to deal with their shock mixed with my emotions... I'm sure you can imagine this doesn't add up well. For the most part I'm strong and collected (just don't ask the people at Shands pharmacy and lift team guys today, they witnessed a breakdown). Luckily the lift team guys new what happened with my son, the poor pharmacy people thought I was crying over having to pay $12 for Allegra lol.
Anyway...
It's hard to tell people how my child used to be because I desperately want that child back and miss him so much. It just brings out so many emotions. I'm already exhausted, I don't need to be on anymore of an emotional roller coaster than I already am. Be sensitive people, please don't assume.
The kicker is that, especially with the nurses and therapists, that they don't know his story... shouldn't you have looked in his chart before our appointment? At least had a tad bit of an idea of what you were walking into? Luckily we have some really great people who have done this... but of course, you remember the bad experiences better than the good ones.
The other assumption that I have encountered frequently is people talking to him like he's a baby... he is 7 years old! & I don't have any test or what ever to prove it, but he didn't lose any bit of his ability to understand. I have no doubt in my mind that he is completely aware of what's going on and the fact that you talk to him like he is a 2 year old and in a baby voice is just insulting. Just because he can't talk back to you doesn't mean he doesn't know exactly what he would say if he could. I can only imagine how it makes him feel to be talked to like that and not be able to communicate back.
I would now like to take the time to thank everyone who has been conscientious and spoken to him like the age that he is and taken the time to learn or read his chart/story.
End rant.
Your feelings are validated :) I am a speech therapist; and everyone in this field or related fields knows better. Definitely read the chart, read the background, ask questions. Do give strangers a little grace. They don't know, and probably just think you are amazing. He is beautiful, and you can see in his eyes that he understands :) he should not be underestimated. Great job mom :) everything is going to be more wonderful than you may see. This is still so new! I have a two year old, and I put myself in your shoes. You are loved, you are seen, you are supported. Just love that little man to pieces everyday. And tell those therapists they should know better! Sheesh. Blessings.
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