Dwarfism Awareness Month | Post 10

This post is from October 31, 2015. Because of life, I'm just getting around to publishing it today. 

On this final day of Dwarfism Awareness month, I wanted to share a few things that make Otto unique not because he was born with achondroplasia, but because he's Otto. He's not defined by his diagnosis, and I hope all of you will someday get the chance to meet and know him.

• He is always (yes, ALWAYS) happy. 
• When he gets excited, he moves his legs faster than I've ever seen anyone move their legs before. He's even earned himself the nickname of "Legs" at daycare. 
• Whether it's playing with instruments or dancing in the living room, he loves music. 
• He prefers to be outside. In fact, as a newborn, there were times when the only way I could get him to eat was to go outside. 
• He had a great sense of humor. Even at his young age, he knows how to play tricks and laughs at his extremely funny parents. 
• He has become a bottomless pit when it comes to eating. This is major change from one year ago. His favorite foods are macaroni and cheese (shocking, I know), raspberries, fish sticks, tater tots, ketchup and ice cream.
•  He loves his sister (and she loves him). It's so fun to see Otto make his way close to Mae when they are playing and often reach for her hand/arm/leg to hold. I'm sure that they will have typical sibling disagreements, but I can already tell that they'll be great buds.

At the end of the day, we all have something that makes us different. When we take the time to learn about each other's differences, it leads to a more understanding and compassionate world for everyone.

Thanks for reading along this month. If I've left any of your questions unanswered, please comment below (or reach out to me privately, if you'd prefer) and I'd be happy to explain more!

the best of buds

Dwarfism Awareness Month | Post 9

There is no "cure" for dwarfism; in fact, it's not a disease that requires one in order to live happily or be successful.

There is an option to undergo limb lengthening procedures that would require years of extensive surgeries. However, "there are no established medical indications for symmetric extended limb lengthening (ELL). While it may have benefit in preventing certain orthopedic and neurological complications in some skeletal dysplasias, the procedure is primarily being performed for adaptive, cosmetic, and psychosocial reasons (from the LPA)."

There is also research being done on a pharmaceutical treatment that has been shown to increase growth velocity in people with achondroplasia, although the long-term affects of such treatments are unknown.

These treatments are controversial in the LP community. And while, it's great to see the medical advancements, this is not a choice that I would ever make for Otto. We will make sure he's informed of his options and allow him to make a decision for himself when he's old enough to do so. Regardless of his decision, Otto will always have our love and support.

going places

Dwarfism Awareness Month | Post 8

"Midget" is derived from the word midge...a small, blood-sucking insect. It was never coined as the official term to identify people with dwarfism. In fact, it was created years ago as a label used to refer to people of short stature who were on public display for curiosity and sport. This was during a time when freak shows and carnivals were popular. People born with dwarfism were put on display with the intention of humiliating them. Can you imagine?

Today, the m-word is considered a derogatory slur. The dwarfism community has voiced that they prefer to be referred to as dwarfs, little people, people of short stature or having dwarfism, or simply, and most preferably, by their given name (from the LPA monthly newsletter).

I had never really given much thought to the "m-word" before learning about Otto's diagnosis. If you would have asked me about it, I probably would have shrugged and maybe even said something about being politically correct. However, knowing what I do now, I would have been wrong.

The words we choose when referring to others have meaning. When people choose to use the m-word, they are also choosing to dehumanize and degrade people who were born with dwarfism. It's not about being politically correct; it's about being respectful. This is true not only for the m-word, but the n-word, r-word, etc.

In the past year, I've seen a new vineyard change its name and brand, removing its fairytale dwarf-theme (because when people with dwarfism are used as characters and made out to be mystical, it makes them less human and therefore dehumanized REAL people with dwarfism). I've seen a school district (in McLaughlin, SD!) drop its "Midget" mascot so to be more cognizant of other's feelings. I've even seen a raisin company willingly stop referring to small raisins with the m-word!

Unfortunately, I've also see a school district (shame on you, Freeburg, IL) turn their heads and say that they value the history and tradition of their mascot more than they value compassion toward those born with dwarfism.

Change is happening and I am hopeful that the world will be a kind and compassionate place for Otto and others.

So what should you do now that you know all of this? First, think about the words that you choose to use when talking about people different than yourself. Second, when you hear others use these terms, don't be afraid to speak up and correct them. Be kind in doing so. Let them know why it's important to you. Use Otto as an example!

As I said, this is an important topic...if you have ANY questions, please, please, please don't hesitate to ask. ‪

choose kindness.

Dwarfism Awareness Month | Post 7

Otto is 15 months old, weighs 16 lbs and is 25 inches tall. He wears 6-9 month tops and 0-3 month pants. We cuff his sleeves more days than not, but I'm sure I'll eventually invest in a sewing machine and bust out my seamstress skills. | When we're out and about, I'm often asked how old my 'baby' is. As Otto gets older, more people notice that his size and his age don't quite add up. These innocent questions serve as the perfect opportunity to educate others. Most people don't know what to say, while others shrug it off, and some ask follow up questions. I'm happy to help advocate for Otto and hope the he (and Mae) will learn from my example.

future's so bright.

Dwarfism Awareness Month | Post 6

People with dwarfism can do everything that average stature people can do, sometimes just differently. Matt and I hope that our children will have the same passion for sports (ahem...running) as we do. We've been excited to see that there's great organizations that provide competitive opportunities for children and adults with dwarfism, including the Dwarf Athletic Association of America and the US Paralympics. We follow a handful of dwarf athletes via social media and love seeing their successes at the Para Pan Am Games, NASCAR races, etc. We recognize that Otto might find his passion outside of the sports world (and we'll support him if that's the case), but we love that there's no reason for him to count sports out!

go team, go!

Dwarfism Awareness Month | Post 5

Children with achondroplasia tend to have a higher than average resting body temperature. We've always noticed that Otto felt warm to the touch and sweat a lot, but we didn't realize it was connected to him having achondroplasia until we spoke with other families. He'll eventually grow out of it, but until then, we'll keep dressing him in tank tops, keep a fan nearby, and embrace the buzz cut.

sweet summer dreams.

Dwarfism Awareness Month | Post 4

Children with achondroplasia have delayed gross motor development. Milestones like sitting, crawling, standing and walking are typically reached at 10, 11, 17 and 20 months, respectively. However, there's no cause for alarm if milestones aren't hit until later. These delays are partly due to children with achondroplasia having shorter limbs and larger heads and partly due to them having low muscle tone.

Speech development can also be delayed. This is caused by recurrent ear infections or buildup of fluid in the middle ear and because of low muscle tone in and around the mouth. Additionally, doctors have said that speech can be delayed because the brain is concentrating so power much on learning motor skills that language/speech development fall behind.

Otto is 15 months old and is just beginning to say more sounds; we have noticed some improvement with this since his ear tubes were place. He doesn't sit, crawl, stand or walk, but that doesn't stop him from getting around. His preferred modes of transportation are barrel-rolling, reverse snow plowing, and pivoting on his back or tummy.

One of our specialist gave us a great perspective that these alternative ways of getting around are something to be celebrated. Even at Otto's young age, he has already become aware of how his body is built and has figured out how to make it work for him!

under the sea.

from the american academy of pediatrics