I think some people think I work with Kreed 24/7 to accomplish his rapid progress with his device. People see videos of Kreed’s progress and everything he is
learning to do. But it is not like we spend every moment of our life trying to
get Kreed to communicate. Case in point: Just watched like three hours of
Catfish while Kreed ate Boo Chips and watched his movies. There are many nights
everyone is exhausted or need to tune the world out (thank you DVR). That’s why
I try to show families sometimes all it takes is a few seconds to make such an
impact on your kiddo. When Kreed comes into the kitchen, we pause the TV or
whatever we’re doing and I will take the next two minutes with his device to
figure out what he wants. Sometimes he gets what he wants, other times he hears
the big N-O. And a mild struggle might ensue. So then I might take another five
minutes to distract him and help him choose something else. All said and done,
we spent about ten minutes together using his device to talk to us. Those ten
minutes in the last three hours probably meant more to him than following him around
and annoying the crap out of him for three hours.
Kreed often kicks me out of his room or therapy room. He’s
sixteen years old and wants his space. We give him his space. And then we make
sure we’re there when he wants to engage. Now granted, I will also just make
the time to work on stuff. But as a whole the bulk of Kreed’s progress has come
from his interests or when he presents the opportunity to us. Guarantee we make
more progress by working WITH him rather than against him. That way he also
knows when I put my foot down, it’s time to work!
Sometimes I feel lazy and that I need to do even more with
him, especially with his new awareness. But then he politely places his hand on
my back and leads me out of the room. Would I get more out of him by forcing
him to engage with me, or by waiting for the right moment? At this point in his
life, sometimes waiting for the right moment gives us more gold than not.
So some days, we have like ten videos posted on his various
social media. Other days, we are lucky to have one. I've learned to let go a
little and realize how truly remarkable his progress is even though we aren't
up his butt 24/7. There’s something to be said for quality over quantity. We
make out moments count. And that’s why I post short videos or simple how to’s-
to make other people’s moments count. Granted when Kreed first started with his
device, we did a lot more hands on work and it was more constant for him to get
the idea. But he has the idea now and we let him take the wheel sometimes. He
is often just like every other teenager out there- give me food and a TV and
I’m good for hours! Some days he wants to be more a part of our world and other
days he just wants to be chillin’! And that’s okay. He and I have many, many
years to help change the face of autism. Right now I think he’s doing a damn
fine job while being a teenager and enjoying his time. And I’ll stop feeling
guilty that we don’t do more!
So truly, the lesson in all of this is: Quality over quantity. Working when he’s happy versus when he’s pissed (well even when he's pissed he uses his device!). And how
a device can just be seamlessly integrated into a house hold, where it doesn't
take over everyone’s life, it’s just accepted as Kreed’s voice and he uses it
when he has something to say. His behaviors no longer speak for him, but he is
now speaking for himself.
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