8/10/08 - There are times when I sit in front of a blank
screen hoping for something profound or inspiring to write about, and nothing
comes to me; therefore, I have nothing to say. Of course, I think it's
actually that I have something to say; I just don't know how to say it.
At the HPE conference, I spent some time with 17 year-old Robert from New
York. Robert didn't speak verbally; however, he used an augmentative
communication device to help him communicate. If you've been a Sammy fan
for a while, you may remember that we were just beginning this type of
communication with Sammy.
Like Sammy, Robert activated the device by
moving his head to his left to press a special switch attached to his
wheelchair.
Robert gave me an awesome demonstration on how the device worked, and I was so
impressed. Contained on the device were pre-recorded messages, phrases,
and words; many of them were recorded using a masculine voice whenever possible
because what 17 year-old boy wants his voice to sound like his mother's? Visually,
the top of Robert's device contained words or pictures to represent the various
words and phrases available. It was set up in a grid with 4-5 rows down
and probably 8 columns across. Each square of the grid contained a little
light, and Robert would watch as the device would light up each row. When
the appropriate row was lit, Robert would turn his head and select that
row. Then, the device would scroll through each square in that row and
when the light came on at the appropriate word or phrase Robert wanted to say,
he would turn his head to activate the switch. With that movement, the
device would activate the pre-recorded word or phrase.Words, phrases, and sentences could also be
added and recorded as needed to suit the situation.
Thankfully, Robert was patient with me. At first as he demonstrated the
device, I would try to fill in the blanks of what I thought he was trying to
say, but I didn't always get it right. Finally, Robert activated a pre-recorded sentence that said, “It’s my
turn to talk now!”I think my eyes
bulged out of my head and my jaw dropped open when I realized that my friend
Robert was politely telling me to “just shut up and listen”!(I have a feeling that Sammy was totally
enjoying my moment of humility!)In that
moment, I realized that Robert didn’t need me there to fill in the blanks; he
communicated just fine on his own using all of his skills and abilities.He knew what he wanted to say, and he knew
how to say it.
Recently, I’ve been listening to a CD by Matthew West, and the
first track on the CD is a song called “Something to Say”.Every time I hear that song, I think of
Robert.In those moments when I sit in
front of the empty screen thinking that I have nothing to say, I think of
Robert and what he would say if given the opportunity.Even though he is unable to speak, he certainly has
something to say.
8/11/08 - As much as I try to avoid thinking about it, this week is a
difficult one as most of the kids in our area are headed back to
school. This year, Sammy would have begun kindergarten.
Just before he
passed away, we had begun the early discussions about the possible
options available to him. We had hoped that his preschool teacher might
also be his kindergarten teacher because she is such a great teacher.
Last year, the children in Sammy's class found a cricket in the
classroom, and because they were interested in crickets, his teacher
incorporated a cricket theme into their weekly lesson. They learned
about crickets--where they live, what they eat, how they make their
sounds--and they made their own cricket representations using tissue
paper, pipe cleaners, and egg cartons. One little cricket managed to
find its way into the classroom, and because his teacher was inspired,
Sammy learned all about him.
Last week when I had trouble sleeping, I
stayed up late watching TV in the dark. Suddenly, I felt something fall
onto me, and I looked up to see what it might be, but of course, it was
dark so I didn't see anything. Still not feeling comfortable about what
it was and fearing what it could be, I began investigating, and that's
when I saw the culprit on the carpet. A big ol' cricket! I've since
found three crickets in the house so far! Sammy may not be going to
Kindergarten this year, but I think he's still playing the role of
class clown by pulling pranks on me!
8/23/08 - After spending some time recently going through the many
photos and videos saved on my PC, I finally took the time to play with
youtube.com a little bit, and I uploaded a couple videos of Sammy. The
video clip below is from a physical therapy session in March 2007, just
three weeks before Sammy's 4th birthday. Sammy's physical therapist,
Miss Gayle, is working with him, and he's more interested in getting
hugs from her. The voices you hear in the video are Miss Teresa,
Grandma, and me. When Sammy went to PT, he brought along his very own
cheerleaders, and he liked to make us squeal with delight! This might
give you a little taste of what Sammy was like on a very good day.