Grandma: I'm just not sure why she's waking up in the middle of the night. We checked to see if she's had a fever, she doesn't have any tooth problems, upset stomach, she certainly can be having any bad dreams.
Mom: Why can't she be having bad dreams?
Grandma: She doesn't dream, our doctor says she doesn't dream.
Mom: Of course she can dream, she just can tell you what the dream was about.
Grandma: Well, that's not what the DOCTOR says.
Mom: I mean, she could have been dreaming about her mommy leaving or something.
Grandma: Oh she doesn't care whether mommy there or not, really she's only living in the present, she hardly reacts when my daughter comes home.
Mom: It's not that she doesn't miss your daughter, most often, autistic children will just not be able to express it; they often have a very difficult time with communicating emotions and the 'outside' world has trouble reading the signs when they are trying to communicate emotion. You know they do a lot of work on things related to the kids having trouble requesting things that are not visually present. I have no idea of her progress on the ABLLS or what's in her IEP, but it's something that you might want to look into.
Grandma: Oh, I don't know, it's just all so complicated...sometimes I just wish they'd just stop pushing her and give her what she wants. It's like...when she wants to go out a door, she stands in front of it and cries...and they FORCE her to sign to go out, and she can cry for 5 or 10 minutes before she does it...it's terrible!
Mom: They're just trying to get her to use language, if they continually give in and let her out when she cries, she learns that if she cries, she gets what she wants. This way, she learns to communicate the things she wants.
Grandma: Here comes my girl, I'll see you next week.
Off Grandma walks, with her Autism Speaks T Shirt, and a child who desperately needs to be understood.
Now...I am certainly glad this is a hypothetical situation and that I had no real-life basis for this conversation. While, I could half-expect this coming from someone who does not live within the rainbow of the spectrum; it disturbs me that this conversation, might an most likely does occur all across the US and the world every day. Folks... in short, I think we are not doing a good enough job conveying the needs, desires and capabilities of those on the spectrum, ESPECIALLY, those who are unfortunate enough to not be able to express themselves well, or not at all (in the conventional sense anyway). I'm not sure we are going to be able to change the minds of those outside of our comparatively little circle if we can't change the hearts and minds of those within it.
Please try and convey to all those you touch that, while autism may appear to be a shell, there is a living, breathing, THINKING, emoting and deserving human being on the other side of that diagnosis...limited only by their abilities, desires, ambitions and perseverance...and yours.
1 comment:
Very well said. I do my best to spread the word at meetings, especially to parent of very young kids, who have little to go on other than what they have been told. Sometimes they are receptive, sometimes they are not. Some people are very resistant to the idea that there can be worthwhile developmental goals other than being the same as everyone else.
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