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

The Day Has Come

I was certain that I would dread this day. That it would be the cause of endless tears and stress. But I don't. And I'm ok. And so is Ryan. Today is his first day of Kindergarten!

Like many parents of children with conditions, I never thought that this feeling of content would be possible. Ever since our first Little People of America event, my eyes were opened. I met adults and children that have achondroplasia - just like Ryan does. I heard about their good experiences and their bad ones too. The world doesn't make life easy for a person with dwarfism. The idea of going to school with hundreds of children that were all older and bigger than Ryan scared me. I remember standing at our first LPA event and holding Ryan tighter and tighter. And it hit me. I can't hold and protect him in my arms forever. One day soon I would have to release Ryan from my arms and trust him and those around him. And so our work began. 

At first it seeemed easy. My husband and I embraced Ryan's condition and it seemed like enough. Ryan was perfect. His height didn't matter. Until I looked forward. Ryan would need more than a mother's love to handle school, friendship, work, love ... life. He would need self acceptance and love for himself. He'd need confidence. And he'd need thick skin and a sense of humor too. Challenge accepted. It was time for me to get Ryan ready for life as a little person. He had just five years to understand and accept his difference. To learn how to stand up for himself and to handle negativity that would surely come his way. All of this starting before he even knew how to talk. But I knew he could handle it. He had to.

It's easy to think that Ryan is just a happy kid. For starters, he is a happy kid. But it's not entirely "just the way he is". And he's in good company with other kids that have conditions. Having a disability takes a lot of work. And boy has Ryan worked. Five years flew by and were filled with endless pep talks and information about dwarfism. I came up with the phrase "Little Big" helping Ryan understand that though he is little, he can do big things and he can be big. He attended tons of LPA events and met other kids just like him. And at the same time, Ryan was immersed in the world of average height friends at school. He learned how to stand in line, write and follow directions. But more importantly, he developed his sense of self. He realized his difference while also making friends. He learned that the two can go together. His thick skin began to develop. Over the course five years he experienced life as a friend. As a student. As a baseball player and swimmer too. He did it all. He did it with stools. Hemmed pants. Doctors appointments and adaptations. But he did it. He experienced life as a little person. Phase one of a billion complete. We have a lot more work ahead. But today we celebrate.

I'm so proud of Ryan. And I'm proud of myself too. I set the bar high. I pushed him out of his comfort zone. He had to adapt, find his voice and learn patience. I'm his biggest cheerleader and his drill sergeant. And after all of our work, Ryan has risen to the challenge and is ready for Kindergarten. Ryan is ready for Kindergarten because he's worked for it. He's ready for Kindergarten because he's freaking awesome. And most important of all, he's ready for Kindgarten because I realized that even though I have to physically let go of my boy, as long as he loves himself, my embrace will last forever. 

He Puts His Pants On TWO Legs At A Time

It was a typical morning. Everyone was up and getting ready for the day. I handed Ryan his pants and watched him get dressed. That's when I noticed. Ryan did something that I had never seen before. It's quite possible he is the only person on the planet that does this. He put his pants on TWO legs at a time.

My son is different. It's something that I rarely see or think about, but at the same time, Ryan reminds me constantly. Sometimes he's simply standing next to a friend. He's so tiny next to his friends. Or perhaps he's trying to get shoes onto his thick chunky feet. Or, like this particular morning, unlike the rest of the universe, he's putting his pants on TWO legs at a time. Apparently Ryan hasn't gotten the memo that everyone puts their pants on ONE leg at a time. It's that very act that supposedly unifies us all together and reminds us that despite our conflicting opinions, contrasting beliefs and different appearances, we are all the same. Enter Ryan. Yup, he's different.

These moments that remind me of Ryan's difference are continuous. Sometimes the reminders are heart warming and other times they are heart breaking. Our normal is far from the standard. My house is littered with stools, pointers and extensions. And my calendar is booked with numerous specialists year round. I even have a sewing machine - I never thought I would take on the challenge of sewing. When it comes to the creative arts, my mind is always eager, but my output makes Pinterest cringe. At least I've managed to get the hang of hemming pants! After all, Ryan's legs deserve some daylight just like anyone else's.

Of course, it's no surprise that Ryan's daily life makes his difference stand out. After all, he IS different. And his difference is in plain site. All. The. Time. No matter where we go, it's clear that Ryan is little. It's obvious that he is different. There's no blending in for Ryan. He's exposed no matter what he wears, says or does. Whether we want it or not, Ryan's dwarfism is part of who he is. After all, it's the first thing a person sees when meeting him. I hate the fact that this sometimes means that he will be judged before he's even said "hello". And other times he may be teased just for how he looks. These are the heartbreaking moments.

But Ryan overshadows the heartbreak. On a daily basis I'm reminded how our differences are what make us awesome. Ryan is the smallest kid in his class. But he's also the loudest. And he's actually looked up to. If you can believe that! His confidence and love for life is sought after by his friends. And when it comes to his hurdles, he's always finding new and inventive ways to get it done. And he's got it done often before I have a chance to realize the possible challenge. Ryan is different alright. And as odd as it may sound, I'm grateful for his difference.

Over the past five years we have celebrated Ryan's special difference. And in a world where people put their pants on one leg at a time, Ryan is being himself and he ROCKS. Sure he has rough times. There are tears, frustration, pain and fear. These emotions are a standard for us. But being different has also benefited Ryan. For starters, he's made me a better mother than I could have ever imagined. And he's learned the value of friendship. Of trust. And of pride. He knows who he is and likes himself. It's unreal.

Apart from himself, Ryan sees the world for what it has to offer. And I've learned to do the same. I've never noticed such beauty in people's appearances, voices and actions. Ryan is in good company when it comes to being different. Sure, being different means more attention. I've never been a headturner myself, but with Ryan in tow we are noticed. I'm not ashamed of the fact that Ryan turns heads. He's short, but he has a smile that spreads like wildfire. If it weren't for Ryan's difference how many people would miss out on a spontaneous midday smile? Would we see all the beauty out there in the world? Yup, being different is something to notice.

Sure, he puts his pants on two legs at a time. But I guess it makes sense. He's ready to go in half the time. And he's definitely a kid that's going places.