Venturing Outside the Bubble

The other day Ryan said something that he's never said before. We were heading out to a friend's birthday party. And just as we were leaving he said, "If someone I don't know calls me a baby, I'll tell them that I'm 7." My first thought was pride. He still struggles with confidence and speaking up. But then I realized something. He's nervous. He's considering the fact that there will be kids he doesn't know at the party. We're leaving the comfort of his bubble.

Ryan is surrounded by the most amazing people. His family. And his friends at school. Our family friends. And our LPA friends. Ryan has worked hard at being the best he can be. And it shows. No matter where we go, he seems to make friends. He even makes friends with employees at our grocery store. His bubble is fully intact and he thrives inside of it.

It's rare that I consider the world outside of Ryan's bubble. This is partially because we don't often find ourselves needing to venture outside. As long as Ryan has some of his comfort with him, the bubble follows. Going to the park with friends. Swimming in the community pool. Family trips. His bubble is there for him. There's no need to look outside. This is a great skill we all have. We aren't looking for the stares. Or the pointing fingers when we go out. We are with our friends, or simply each other. We do our thing and we're happy. The bubble is intact.

We are lucky to have a strong bubble - it's the reason Ryan appears so confident. But there are a lot of times Ryan has to venture outside of it. More than I realized. The world outside of his bubble is giant. And it's scary. The weight of this unknown is quite a lot for a kid to carry. And he carries it everywhere he goes. Just one question about his height ... and POP. His bubble is burst. He's exposed.

In the past we enjoyed our ignorant bliss. And we often still do. Bubbles are protective and secure. Ryan is safe and happy. But as he's getting older, he is venturing out more on his own. Sometimes he's forced to when he is asked about his size. And sometimes he is looking out and wondering. He's starting to see the world outside of his safe place. He sees his friends getting much bigger. He has witnessed hurtful actions and realizes his own insecurities. And though his bubble has given him confidence and strength, he is going to venture outside more and more. There is a big world out there. And I wonder if he's ready for it. And if I'm ready for it.

I can hope that as Ryan ventures out, he will be able to use his bubble for support. A soft place to land when he falls. A look back at the confidence he is capable of finding. A lift up to reach the tools he needs when faced with challenges. He's grown so much living inside of his bubble. And even though he needs to venture out, I'm glad that it's still there for him. As it always will be.

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.

Sometimes They Look At Him

It happens. And it's likely happening more than I know. But when you're different, people will look. It's just the way it is. People are curious. They are concerned. Or perhaps they think there is something to laugh about. Or they are simply noticing. Some say it's human nature. But regardless of why, they always look. And since Ryan is different, sometimes they look at him.

My first thought is that they are taken by Ryan's off-the-chart cuteness factor. Aren't we all? :) Or possibly they are drawn by his contagious smile and magnetic personality. There are a million wonderful reasons why a person may look at my son. But no matter how positive the attention is, it's still attention. They are still looking at my little boy.

Recently at a park, a little girl was staring at Ryan as he played with his friends. She just stood there and watched him. Though she didn't speak, her eyes said enough. Like lasers they sought him and exposed his difference. They singled him out and made him weird. They teased and laughed. And they hurt my heart more than I can explain. But when Ryan noticed her, he introduced himself. And he even told her that he is "Little Big". My damaged heart become whole in a moment. And though her eyes didn't divert from Ryan, he gave her eyes something to see.

Sometimes they look at him. But I've learned that sometimes it can be a good thing. I know this is true because Ryan reminds me every day. The day at the park is just one example of big and small moments when Ryan stands taller than tall. While I sat on the sidelines wishing for a reason to smack the girl's mother - how dare she teach her child such hurtful tendancies?! - Ryan received an opportunity. And he took it. The little girl gave Ryan a chance to speak up. And a chance to stand up for himself. She gave him an occassion to be proud of who he is. And he took it. I was so proud.

Sure, people look at Ryan. And often I find it hard since actions really do speak louder than words. The looks and stares are so hurtful. Pointing fingers, avoidance and laughter make deep deep wounds. But then I remember, actions speak louder than words. It can go both ways. When Ryan rose to the challenge the little girl offered at the park, he didn't raise his voice or fight back. In fact, he barely said a word. Instead, he made her actions insignficant when he ignored her and continued to play with his friends. He didn't care that she was staring. Her attitude didn't have to ruin his day. And it didn't.

Sometimes they look at Ryan. And sometimes it hurts his feelings. And it always breaks my heart. But it will never define how Ryan feels about himself.

Big Facts about a Small Boy

October is Dwarfism Awareness Month! And in honor of this month I thought it would be a good time to share some information about Ryan and his condition.

First, the most important thing to know about dwarfism is …

WE LOVE IT WHEN YOU ASK QUESTIONS!

Please ask me and/or Ryan why he is so small. Ask us what you're concerned about. Give us a chance to help you understand. One thing I've learned over the past six years is that acceptance doesn't exist without understanding. And so we LOVE it when you want to understand. 

Here are some typical questions that I have come across. 

Is dwarfism hereditary? Well, yes and no. In our case no. My husband and I are both average height. In fact, more than 80% of little people are born to average height parents. Scott and I had no idea that our son had achondroplasia until after he was born. Many families learn about their child's dwarfism during pregnancy. Which for me, would have made delivery and the first couple of months a lot easier! I'm a bit of a planner. And I certainly hadn't planned on my baby having dwarfism or having the endless possible complications that come with it. But just days after his diagnosis, Ryan taught his plan-crazy mom that perfection can't be planned. 

For little people, the chance of having a baby with dwarfism is much more likely. And that is definitely the case for Ryan. He carries one dwarfism gene and one average-height gene. 

How did Ryan get achondroplasia?

Achondroplasia is caused by a change with the FGFR3 gene. During fetal development, the skeleton is made up of cartilage. Normally the cartilage converts to bone. But for Ryan, this didn't happen. 

The FGFR3 gene is responsible for the production of a protein that is necessary for bone growth and maintenance. For those with achondroplasia, the gene has mutations that cause the protein to be overactive and to interfere with skeletal development.

This genetic change occurs only 1 in 26,000-40,000 births (that's 0.0025%!).

In comparison, the chance of having identical twins is 1 in 250 (that's 0.4%!).

We definitely consider ourselves winners of the genetic lottery! 

How small was Ryan as a baby? Since Ryan is so much smaller than his peers, you'd think he was a fraction of their size as a newborn too. But actually, many babies with achondroplasia are born in the typical height and weight range. Ryan was 6lbs 15oz and 19" long. But if you looked closer, you'd definitely notice that his head was big while his arms and legs were short. There were other signs like his "trident fingers" and the ear infections he got at just two days old. We may not have seen it right away, but looking back we had many indications. 

Does Ryan have medical problems? Ryan is doing really well! Overall, a person with dwarfism will lead a perfectly full and typical life. People with dwarfism have normal life spans, normal intelligence and pretty good health. 

But there are many complications with dwarfism to watch and possibly manage with surgery. The severity of complications varies a lot from person to person. Ryan has had sleep apnea corrected by tonsil and adenoid removal. He had ear tubes placed at 9 months old and we monitor his ears now since the tubes left holes ("lucky" Ryan this isn't typical). He has also had MRI scans to watch for spinal compression and hydrocephalus. Ryan’s first year was extremely hectic and stressful as we went down the list of complications, doctors, tests and procedures. But we made it and today we are managing his needs as they come up.

Ryan has a lot of doctors that help us keep him doing well and are also available to navigate needs as they arise. Ryan has a Pediatrician, Genetic doctor, ENT doctor, Pulmonary doctor, Neurologist and Endocrinologist. He's proven to be quite tough when it comes to constant doctor visits and tests!  

How tall will Ryan get? The average height of a person with achondroplasia is 4 feet tall. Ryan's torso will be the majority of his height since his arms and legs are short. 

Is Ryan a "midget"?  NO. Definitely not. The world "midget" (or M word) is considered very offensive to people of short stature. The word was used back in the late 1800s during the "freak show era" to describe little people that were displayed for public amusement. Which is why it's so unacceptable to most little people today. Like anyone with a difference or disability, little people should not be laughed at. Ryan likes being called "Little Big". And the term Little Person is also good. Referring to Ryan as a "person with dwarfism" is ok too. Another option is to simply use the person's name. Ryan goes by "Ryan" with friends and teachers and by "Ry" at home with me. 

What do you need to do at home to accommodate Ryan's needs? Some people prefer to renovate their home to accommodate the needs of a person with short stature. Which is wonderful since it makes for an easy and comfortable home life. For Ryan, we have made some changes, but we also want to make sure that his normal habits are to adapt and adjust himself. The world isn't going to be renovated, so we want to make sure that he gets plenty of practice with chairs, stairs, doors, etc. at home. We have made adjustments in places like the bathroom for his personal care and the stairs for his safety. Perhaps as an adult he will make more accommodations in his own home. Or perhaps not. He's pretty good at adapting in the big world!

This is good start to understanding dwarfism. I hope you found it helpful and interesting. Thank you for your interest! And don't forget to ask us questions! 

Extreme WHAT Wrestling?!

A letter to reach out for help and to vent my frustration ... 

Dear City of Chandler, "Extreme ___ Wrestling" and HDE Agency, 

Allow me to introduce myself. My name is Erin Parsons. I am the mother of two amazing children. My son Ryan is 5 years old and has a form of dwarfism. And today, Ryan stands MUCH taller than you. 

I'm writing this letter in regards to the upcoming event in Chandler, AZ that is hosting "Extreme Midget Wrestling" on 9/16/17. It's beyond frustrating to me to witness the lack of concern regarding this event. Please take a moment to read this. I ask you to think about my sweet amazing 5 year old that is made a joke from this event in our very own community. I hope you think about him, about other little people, and maybe you know someone that has a condition that makes them different. 

For many, the "M Word" is not understood. After all, dwarfism is really rare. I too lacked understanding of the condition until Ryan came along. In fact, my son was the first little person I had ever met. So with this in mind, I took it in consideration that perhaps you weren't aware of how hurtful this word and event is to my son, his family and to others with dwarfism. So I made a phone call. My husband wrote an amazing letter. Our local LPA (Little People of America) wrote letters and made calls. And we received a response. But unfortunately our joy for this response quickly dissipated as we were told that though this event is happening in our community, that it wasn't hosted directly by the city and therefore could not be canceled. This isn't right. 

The wrestling event is using the "M Word". Perhaps you may wonder what is hurtful about this word? For starters the word "midget" comes from the word midge which means "small fly". Please don't call my son a small fly. Please don't label him a pest. And please don't give him the idea that he isn't worth more than a pesky fly. The "M Word" also promotes a negative stereotype about people with dwarfism. It's reinforcing the idea that little people are a joke to be laughed at. Please don't laugh at my son. Don't point at him. Please don't make it ok to laugh at his condition. The "M Word" is a disempowering word that makes a little person feel "less than". It's dehumanizing. It's humiliating. It's about basic respect and not labeling people. 

Take a look at the comments in social media advertisements for your event. There are countless comments spreading hatred towards little people. Comments that are crude. And hurtful. And every single comment is about my son. They are about other children that share the same condition. They are about the short-statured professionals that he looks up to. They are about doctors, teachers, lawyers, students and actors. They are about my 5 year old son. And he's so awesome. The kid can light up a room with his smile. His determination and love for life is incredible. I'm so proud of the life he leads. But it has taken work. And when the "M Word" is used, our hard work unravels. The comments that I see in your advertisements are the reason my son will struggle. And he deserves better. He deserves respect. Especially from his own local community. 

You have shared that this event that is "designed to generate new awareness while benefiting the fundraising efforts for the Downtown Chandler Community Partnership (DCCP), a 501(c) 6 nonprofit corporation whose mission is to mobilize leadership and resources to advance the development of downtown Chandler as a regional destination for shopping, dining, living, culture and the arts". The wrestling event surely doesn't support this mission. It clearly lacks in culture, class and above all, basic leadership morals. 

Please think about what the wrestling event says to my son. Please give him and others with his condition the respect and life that they deserve. 

Thank you

Erin and Ryan Parsons