It's Dwarfism Awareness Month! And it seems like a good time to
share some words and thoughts from Ryan ... Though he has the most amazing
friends and pretty much what one could call a "perma-smile" on his
face, he is quite the anxious guy at times. And because of this, he isn't often
able to express himself and answer questions that people may have when meeting
him.
When Ryan is asked why he is small, he never has an answer. The
questions paralyze him. He just stands in place like a deer in headlights. Even
though the questions are asked nicely, he can't get the words out. He's not
getting teased or harassed - or at least that we know of. (We have a tendency
to "do our thing" without worrying about what people think). But
there he stands. He is frozen in place. And it breaks my heart.
I want so badly for Ryan to share what makes him small. Because
for the most part, understanding leads to acceptance. His lack of action
frustrates me in the mom-knows-best sort of way. But, when I put myself in
Ryan's shoes I begin to understand. Questions pop his comfort bubble. He's
suddenly exposed and reminded that he is different. He doesn't want to be
reminded. He doesn't want to answer.
I am still adjusting to this idea. To me, it's weird not to answer
since it's quite clear that he is not the average 7 year old. And he is so
often proud of being "Little Big". But this is how he feels right
now. And I'm going to adjust to the fact that he is not ready to self-advocate
just yet. I guess if it took me almost FORTY years to have some sort of
advocacy, I should give him some time too.
And in the meantime, I have put together some of the questions
that are often asked and answered them in a way that I think Ryan would. Who
knows? Perhaps when he gets older he will find this to be a handy reference. I
hope you enjoy the notes "From Ryan" :)
Why are you so little?
My bones do not grow exactly the
same way that yours grow. I have dwarfism which makes my bones grow slower. I
was born with this condition ... kind of like how you were born with a certain
hair and eye color.
What do I call you?
Some words about little people
are unkind. The word "midget" really hurts my feelings. It is a word
with many negative meanings. You can say that I am a Little Person
or that I have Dwarfism. And of course, you can always call me
"Ryan" :)
Are your parents little people too?
No they are not. I am the first
and only little person in my ENTIRE family. My mom and dad were VERY surprised
to find out that I had dwarfism. Most little people (80%) are born to average
height parents – just like me!
Will you be able to drive a car?
Yes! Most
people with dwarfism can drive a car. Because I have short legs, I will need
some changes made to the car so that I can reach the pedals. But that's it!
Sometimes, I think that I might want to be a NASCAR driver when I grow up!
How do you reach things?
I am
lucky and have lots of friends and family that help me! But I also like being
independent. At home I have stools, handle extensions and a few pointing sticks
that help me reach snacks, the sink and things like light switches. To reach
things like chairs and couches, I have to do a little climbing since my arms
and legs are short. But I manage quite well! I can even reach stuff that
my mom tries to hide from me :)
Do you grow?
Yes I do!
I just grow at a slower rate than you do.
If you
eat all of your vegetables, will you grow?
I have no
idea. I don't like vegetables :) ... but I do know that many people with
dwarfism eat vegetables and they don't get bigger. So I think the answer is
no.
How tall will you get?
I am
expected to grow to about 4 feet tall. Most people with dwarfism grow from
about 2 foot 6 inches to 4 foot 10 inches tall.
Do you like being a little person?
Sometimes
I am proud to be little! It is special to have a difference to share with
people. But sometimes it makes me sad and I wish I could blend in with other
kids. Sometimes I can't keep up or even participate if it is dangerous for me.
I don't like feeling so left out and so different. But I am lucky to have
awesome friends. They like me for ME and I remember that when I feel left
out.
