Awareness Month From Ryan

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.