To the Creative Writing Students at Pershing Middle School in Houston:
Thank you for reading my poem. I am honored that you read it as part of your
school day. School was a difficult place
for me for many reasons, so it gives me a great deal of happiness to know my
words are being read by students.
To tell you a little about myself, I am fifteen years old. My favorite things to do are biking, swimming
and reading. I live with my 13-year-old sister, my parents, one dog, one cat
and one fish. I love ice cream, pizza and I-HOP. And I never had a way to tell people much of
anything until I started typing. I can
make sounds, but when I try to say words the sounds do not come out like I
want. That is because I have apraxia. Many people on the autism spectrum have
apraxia. Apraxia is the fancy way of
saying that I can’t get my lips, tongue and jaw to do the things they need to
do in order to make sounds into words.
When I was in elementary school, my mom would sometimes come
talk to the other students about autism and apraxia. She would have them make certain sounds and
think about what the different parts of their mouths were doing. For example, she
would tell them to try making the long “E” sound and hold it out. You will
notice that your face is like a tight smile. Your jaw and your chin go forward. Try making the “D” sound (like the letter D). You will notice that you have to put the tip
of your tongue up hard against the roof of your mouth before making the
E-smile. Try making the “oo” sound (like
in goose and moose), and you will see that your lips have to pucker like a fish.
To make a long “I” sound (like in “ice”),
you have to open you jaw really wide. To
make the sound a “c” makes in words like “cup” or “cake”, you have to very gently
touch the middle and back of your tongue to a certain place at the roof of your
mouth and let just a tiny bit of air out.
You can do this with all the sounds and see that it actually takes a lot
of different movements to make words.
You guys can do them all without even thinking about it. People with apraxia, however, cannot. I think of it like a road in my brain being
obstructed. Words in my head are like
cars on a road to nowhere. It is like
the mother of all traffic jams. I know
what I want to say, but just can’t get the words out of my mouth.
People with apraxia sometimes have difficulty programming their
fingers, too. Doctors would say people
with apraxia have difficulty with motor control. In my case, it means I cannot write with a
pen or pencil, even though I have tried.
My fingers have great difficulty doing things that require tiny
movements, like tying shoelaces, squeezing toothpaste onto a toothbrush, and
opening things like candy wrappers and yogurt cartons.
Learning to type was very challenging because of my apraxia. It took a lot of practice. I had trouble putting my finger on the
correct button. It was incredibly frustrating. Have you ever felt so frustrated
that you wanted to just hit something? That is how I felt early in learning to
type. I still feel like I want to hit
something sometimes. For now, I can only
type with one finger. I have to focus so
intensely. I hit keys next to the one I
actually want a lot of the time, and so typing takes me a long time. I do all
of my typing on an Ipad because the keyboard on my Ipad has larger buttons than
what you would find on a typical computer keyboard.
When you cannot speak and you cannot write, life can be
torturous. People really do not know how to interact with someone like me, so
often I have been ignored. For a long
time, going to school was completely awful because kids did not speak to me,
and teachers spoke to me like I was in kindergarten. They made assumptions because of my
disability.
If having you read my blog means that one less kid with
autism is feeling lonely and miserable at school, then I will feel like I
accomplished something – with your help. Talk to the kids with autism the same
way you talk to your friends. Don’t ever stop talking to them, even if you don’t
get much of a response. We especially
want to feel included. Don’t assume that
not speaking is the same as not understanding.
Don’t assume that someone isn’t listening just because they can’t show
it. Don’t assume that someone isn’t
grateful for your friendship just because they don’t respond the way most
people do. Thank you.
I love hearing from you. Please keep reading.
