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. 

It's Our Normal

Sometimes people ask me if it is a struggle raising a child with a condition. It's a well intentioned question. It doesn't bother me and I usually answer by saying that its no struggle at all. Sure there are tough times, but when I glance at our life, I don't see a struggle. I guess you could say that I'm just used to it. You could say that being different is our normal. So it doesn't seem like a struggle. Or weird. Or anything really. It's just normal.

Clearly I often forget that we are different. Since if I think about it, it's likely not normal for a parent to have a "favorite anesthesiologist" or to know three genetic doctors and a bunch of specialists. And if I think about it, I could make quite a list of our adopted habits that we have come to know as Ryan grows up. But for us, it just seems normal.

It's so easy to forget. After all, he is a six year old boy. And a pretty typical one too! He has amazing friends, goes to school, is obsessed with cars, plays nonstop and even finds time to bother his sister. In fact, it's safe to say that unless he is sleeping, at school or watching NASCAR, he's likely throwing a ball. Up. Down. Up. Down. Again and again. And again. He's a pretty happy kid. It's easy to forget that he is different. I see Ryan. That's it.

Then there are days like today. I took part in a "rare condition survey" in which I was asked questions about life with a child that has a rare condition. I caught myself having plenty to share. Times like this are an interesting wake up call. Despite the fact that our normal works great for us, perhaps I need to consider what lies ahead. Unfortunately, Ryan's normal will always mean a giant world with things literally out of reach. It will be a life with stares and silence as he merely goes about his way. It could also mean medical challenges. This is when my answer to people's question could be answered differently. This is when I would be tempted to say YES. This sucks ...

However, it doesn't suck to take a kid to specialists. Really. It doesn't. Since, ultimately, it's for Ryan's health. And it doesn't suck to make changes around the house for him. So we have a stool obession and pointers next to bathroom lightswitches. No biggie. It doesn't even suck when he can't partipate in some of the things his friends do. Ok, maybe that sucks a little. Yet, he manages.
But it DOES suck that I have to teach my six year kid how to handle the cruel. That his happiness relies on confidence and a thick skin. And it sucks that his five year old sister bears the weight of these challenges too. So I guess I could answer that it does in fact suck. But why? What is the point? In all of the questions I answered today I heard myself share the rough stuff. But I also heard myself tell what followed the challenges.

Ryan may turn heads from time to time. That doesn't have to be a bad thing. In fact, we meet a lot of nice people when we are out and about. And sure, Ryan has met some unfortunate opinions alerady in his life, but he sure weeds out those that aren't exactly "friend material" in a hurry! Our friends are proof of this - we couldn't be luckier with the amazing group of friends we have in our life. And yes, Ryan has had some tough times medically. But it all resulted in a healthy and thriving six year old.

So, maybe it IS a struggle to raise a child with a condition. But my answer remains. Nope. Nothing too rough. Nothing exceptional either. Our life is normal. Just how we want it to be.

Independence vs. Etiquette ... Do We Have to Choose?

I never knew how much I took for granted until Ryan came along. And I'm not referring to pre-motherhood luxuries like going to the bathroom alone, sleeping past 6:00am and hot coffee. I'm thinking about the endless list of things that challenge a person with dwarfism. The hurdles are everywhere. They are the stairs at school, the shelving at the grocery store, public toilets (ugh), light switches at home, the bank teller's counter, and on and on. The world is not made for a person with dwarfism.

And, unless you know a little person it may be hard to understand the difficulty. Unlike those are that simply short, little people have arms and legs that are extremely limited in length. Ryan has surprised many when the boost from a stool doesn't help him reach. But regardless of the difficulty, Ryan always finds a way. His determination and will make me so proud. What a strong and independent boy! I was proud of us both ... until a recent conversation I had with his school.

As Ryan has grown up into a little boy, I have been eager to give him the tools and mindset to find his independence. Together, we made the giant world something that he could reach. I figured it a job well done when Ryan managed to reach something on the table, shelf or counter. I have stood by his side proudly witnessing him climb, tap, shake, roll, push ... you name it - until he succeeded in reaching some place or thing. These behaviors seemed normal and even good as I watched Ryan do things on his own. Until my eyes were opened during my conversation with his school. There is a HUGE gray area when it comes to Ryan's independence and proper social etiquette. Many methods Ryan has come to utilize in using and reaching things, are quite odd and even rude in some cases. Have I been blind to this all along? Did I encourage Ryan develop inappropriate social behaviors? Unfortunately, the answer is yes. But do we have to choose him having either his manners or his independence? I sure hope not.

As a mother, my job is to encourage and ensure that my child is able to manage life independently. But when that child has dwarfism, he is going to adapt and manage in ways that aren't typical for most. When he was a baby, this was evident in his "army crawl" vs the typical crawl on all fours. For Ryan, the army crawl was a giant success! He found a way to move! But as he aged, his adaptations morphed into behaviors that aren't typical - or encouraged at all.  But when I take away the fact that he is a little person, when my blinders come off, I see it clearly. Leaning your entire torso onto the dining room table to reach your beverage is not ok. I imagine myself doing the same thing at a restaurant and I see just how odd and appalling this act can be. It's time that I remove my "mommy goggles" and start seeing Ryan how the rest of the world would. This is when I realize that adapting is not a hall pass for poor etiquette. But do I have to choose manners over independence?

What a juggling act this will be - Ryan needs his independence. He deserves it like everyone else. But he also deserves to be respected and admired. And the guy that lays across a table to reach the salt, isn't likely to get invited to many dinner parties :(

Ryan and I have a new task as he concludes his Kindergarten year. We are going to find ways to manage hurdles with strength, pride and consideration for those around us.  First, Ryan and I will locate needed tools that enable him to act without assistance so that he may maximize every opportunity to do things on his own. And next I need to accept that his asking for help doesn't have to equate to a failure for independence. Obtaining needed help is a powerful act of self-awareness and confidence. But most importantly, Ryan will never apologize for doing things differently. Being different does not equate to poor manners. But it also isn't a reason to do as we please. I believe this. And I think Ryan can too.