This Christmas is bittersweet for so many families in America. It leaves us, as parents, to keep the joy alive in the midst of ongoing tragedies. It is challenging to listen to the joy of my child, expressed in his innocent laughter, while remembering the last evening news report. I never want that innocence broken. However as the years pass and he grows, I know that protective shield is getting thinner. He does ask questions which are difficult for me to answer. I inevitably walk away doubting my parenting skills. I wonder if I answered him in a sensitive, yet supportive way or if our talk is going to be part of a therapy session later... I cannot count how many times I have called my mother and apologized for ever being a kid---because being a parent is harder than I ever imagined. She usually chuckles and reassures me that everything will be fine. (That's what moms do.) I felt the need to reassure all of the moms out there. Things will be fine. No matter what the future holds, you have an instinct built into you which will help you help your child. For those of us who have children who have a life different from others, I say pretty much the same thing. Even if you don't think you know what to do, you probably do. We also know when to seek advice from other parents. This is the time of the year when we feel the real need for support from those who've been there. I invite parents of children with dwarfism to join us at Little People of America. This is an organization started by actor Billy Barty 50 years ago. Originally, it was a place where LPs could go to be with other LPs. As it grew, more and more average height people were joining with their child or other family member who had dwarfism. Today, it is a beautiful mix of people who have this one thing in common. Today, it feels like family. I've met so many friends and someday, most likely, I will welcome some of them into my family. For your child, it fulfills the need to grow up with high self esteem, to be apart of something so close to their heart. It is something which will be a life long connection for you and your child. You can find out more by visiting them online at lpaonline.org. Jax and I wish all of you a peaceful and joyous holiday season.

Dwarfism Awareness Month Event -- Follow up

Written by Gary M. Arnold

It is not like any thought that putting a lot of effort into Dwarfism Awareness Outreach would eliminate the need to do more dwarfism awareness outreach But it can be a little discouraging when you are reminded about the critical need for awareness in the midst of, and very soon after, a fabulous dwarfism awareness event.  Last post I talked about traveling to New York for the Dwarfism Awareness Month Launch.  The event was empowering and the event was infused with pride, no doubt about it.  But the event wasn’t without its challenges.....

Find out what happened and why the need for a human blockade...
http://dwarfism-lpa.blogspot.com/

Competitions Large and Small

Every year, Purdue University hosts the National Rube Goldberg Competition. For those of you who do not subscribe to the geek way of life, Rube Goldberg was a cartoonist. He is known for his comical illustrations of elaborate contraptions; each has a goal to complete a very simple task. Once the task is announced, college and university engineering departments from all corners of the United States put their brains to work. Only the best will compete in the competition at Purdue.

Building one of these, using only found objects, requires quite a lot of mathematical precision. Something that is not my strong suit, I will admit. But for my son, this is the Super Bowl of Science and Technology. Every year for the past three years or so, we plan our trek to Indiana to the armory hangar where these competitions are held. For two years running, Purdue U has broken the World's Record for the most steps successfully completed without an assist. The rules state a minimum of 20 something steps, but all of the competitors go above and beyond. Purdue set its records with well over 200 steps, all of which needed to be perfectly executed.

To me, it was interesting at first, a novelty really. A ball drops onto a small plank, which flips up and releases a boot, which in turn will kick something to trigger something else.... It's like watching an elaborate domino run. The chain reaction of one thing to the next and so on down the line until it reaches its goal was amusing. At least for the first couple of times. The end result may be to pop a balloon, or water a plant or turn on a light switch.

"Kinda neat." Was my first reaction.

Not to these guys and definitely not to my son, who watches the competition like it's a pro baseball game. The edge of his seat action is a must year after year. He has taught me to appreciate it. Still, for me it is really the gratification of sharing this with him. After the competition ends, he approaches each team to get a better view of their contraptions. It continues to amaze me when I see the reaction other people have towards him. The first year, a team gave him a piece of their contraption as a memento. Another year a student from Penn. State literally gave him the shirt off his back, (a team shirt which he wears as pajamas to this day). Some students feel compelled to ask to have their picture taken with him.

Why is that?

All children are beautiful. Any would capture the heart of a college team getting its fifteen minutes in the spotlight. To be asked for your autograph by a star-struck child must certainly stoke one's ego. Personally, I think it is the rare beauty of a child of dwarfism. Children stay young for only so long, so it is not often one sees a child with any form of dwarfism. But they are some of the most beautiful children I have ever seen. Whatever the reason, it happens and it has made him brave.

One year, we'd arrived early to watch them set up, (which by the way takes hours and hours to do). Then something else caught my son's eye. It was the awards table. The only piece of elegance in the concrete and metal building. The awards gleamed under the lights. He was immediately drawn to them. My child is pretty gutsy with some things, but at that moment he was downright mischievous. He had shown great respect to the bundles of wires strewn on the floor, and to the space each team needed. However, when he saw that table he saw a boundary he needed to cross. Never caring who is watching, he walked under the roped perimeter to get a close up view. His mouth was gaping, if I didn't know better, I'd say he was actually drooling. I was adjusting my bags and had not noticed what he'd done until he was already beside the table -- reaching for first place.

"Get away from there right now, mister!" I said in my firmest tone. He turned to me, and with a grin, put one finger in the air.
"Don't even think about it! You come out of there this instant!" I scolded. He knows me so well; he knew I thought it was cute. (Reaching for my camera while giving ultimatums, probably gave it away.)

I started the parental count-down:
"One..."
His finger pointed toward the largest trophy.
"Two.."
I left my camera in its bag. This was starting to get serious. They looked very expensive and he was defying my authority. I looked around to see if anyone had seen him yet. I looked back at him very sternly.
"Three's trouble mister!"
He continued to reach for it! I watched as his little finger moved closer to the perfectly polished trophy. It has always been a rule of mine never to use my size against him, so going in there to drag him out was not an option. I kept my tone low and commanding.
"Don't you touch that...don't even think about it."
But still, he moved closer. I knew he could see his reflection in the shine.
"Don't do it.. come out of there this instant."
Still he moved closer, dazed by its brilliance.
I'd never gotten to three...what was I even going to do at three, anyway?
"Don't do it, I'm gonna say it..."
He stopped, frozen finger in air. I breathed a short-lived sigh of relief. For when he did so, he turned to me...and bit his lip but never lowered his finger. It was just too great of a temptation to pass up, so movement commenced.
"That's it..." I said. His eyes never left mine. " Three."
At that moment the tip of his finger met the brass.

A split second later, he was hurrying his way back to me. There, he resumed his obedient position beside me. He even bent down to pick up something I'd dropped and put it in the bag. Then, he just stood there, looking up at me. No winning grin--no sorry one either. I stood my ground, hands on hips, stoned-faced, and staring back.

(This, if done properly and for specific amount of time, can be a very effective parenting tool.)  He melted a bit and was looking sheepish standing there. I was sure that he felt truly sad about defying me. Not remorseful--just sad.

So now what. I had said "three"! I had promised trouble. I raised one eyebrow, just for the sake of suspense. He put his arms at his side, more nervous now than before. Then I spoke those words that only mothers think to speak when put in this position.
"We will talk about THIS later."
For some reason, waiting until later it is just as effective as any other punishment, if not more. It also gives me time to come up with a rational punishment. Not an impossible to follow through with punishment like, "that's it we're leaving". I thought to myself that I'd better start thinking of some stand by punishments, if this kind of thing was going to start. Kind of a weird milestone, when your child first questions your authority. As we walked away from the table, I grinned to myself.

Can't really blame him for wanting first place.

Common Ground: Bill Veeck and Eddie Gaebel

Common Ground: Bill Veeck and Eddie Gaebel: Eddie Gaebel batting for the Browns in 1951 In the previous post, I wrote about a little person who is allegedly the lucky charm for the...wonderfully written by Gary M. Arnold

Mommy Moments

"Mommy Moments" are those special moments which only I can see, only I could appreciate.  Every mother has them.  Some are a hearty chuckle which later you will try very hard to remember, but cannot.    Some are those times you view from afar and they make you cry because you know it must be that way...because it is not your moment.

I'd love to hear from any of you about your Mommy Moments!  Please comment or email me: jenovesia@gmail.com.  I will post them here!

Thank you!


Findley451 I remember a time when my little girl had a pool party for her birthday, she was 6, but because of her height, the water came just up to her chin. (It was one of those pools with the inflatable rim).  Once the other kids got in there, abt. 5 kids, they were splashing so much my poor little girl couldn't breath, the water was waving into her face.  She just hung onto the ladder for the entire time! We both knew you can't tell the kids to not play, it's a party...She didn't want me to help her, so I just watched. Like you said, "wasn't my moment."


María Teresa :For me, every moment with my daughters is a Mommy moment! Some are good, some are not as good as I would like. But I remember one, when I was driving to school with my girls. That day I just took a bath & combed my hair, and that was all. My older daughter told me: "I like the way you look without makeup. You look very pretty and natural". She absolutely made my day! xx

Hand-Me-Down Genes

I have studied genealogy for some 20 years now. Gone are the days of sitting in small town library attics or ordering microfiche from the LDS Church. With the advancement of technologies, climbing your family tree can be done in a fraction of the time it used to and at considerably less expense. Anyone who digs through their family history deep enough, is bound to find at least one notable ancestor. I’ve traced my lineage back several hundred years and found many surprises. One of my ancestors was in the Salem witch trials. Sarah Towne Cloyce, she was the only survivor of three sisters who were tried for witchcraft. Later, a movie was made about her and her narrow escape from the gallows. Reading the transcripts from the trials, I will have to say, she was quite the debater, (good thing for me). It has been estimated that from her, came over ten thousand descendants. Ten thousand! According to history, in all of them, there were none born with dwarfism …until now. Approximately 80% of persons born with dwarfism are born to average stature parents. They call this a “spontaneous gene mutation”, rather ugly words for something so amazing. Once the gene has mutated, it can be passed on to the next generation. Given that I will someday have grand children, and the lineage continues, there will continue to be LPs in my family for a long time. I remember thinking of that shortly after Jax was born. How cool is that? Hundreds of years from now, someone could be studying our family history and find him. The first of many, the point in time where it all began! I can’t help but wonder if that person will be a Little Person too, or if it will be a long forgotten memory. I guess it just depends on the genes and who gets the hand-me-downs…

A Rainy Day, A Jersey, And Maybe A Quilt

This past weekend, it was a bit gloomy outside. I like that feeling of having to turn on the lights in the middle of the day; it’s something different, unique and it gives me the wont to do something different. Jax likes days like this too. Sometimes we take all of the sheets and the blankets and drape them over strategically places chairs, making a long fort. Sometimes we get out the View Master projector and shine the pictures on the wall. Not just any wall, it has to be something “different”, like a hallway or inside the large walk-in closet. It is more fun that way. These days, Jax has outgrown blanket forts and View Master. So mom needs to think of some other excitement for the unusually dark day. After a board game, I decided that he wasn’t too old for cleaning out a closet. After all, it is fall and it is time to be rid of the summer clothes which he will not fit into next year. He agreed to help me by trying on clothes, something kids usually dread. Jax obviously doesn’t grow as quickly as other children, so he has amassed quite a collection of clothes. This year, as I went through his wardrobe, I realized there were a lot of clothes he had outgrown. After he had tried on a few garments, I realized almost all of his clothes were the same size or smaller! How could I not have noticed such a growth spurt over the past year? Many moms out there are probably thinking to themselves, “Duh, boys grow; every season I have to buy my kid new clothes.” Well, I do too, just not for the same reason. I like shopping for him. This weekend, I found his closet almost bare! Aside from uniforms, I had not bought clothes for this fall or winter. This is only the second major growth spurt he has had in his life. Even though I have many of his clothes tailored, he is usually just growing into them bit by bit. I have to say it out loud, “This was a shocker.” What the average mom can relate with is the feeling of holding a shirt or baseball cap in their hand and remembering the time when their child was younger. It also serves as a reminder that their child is growing up. I am positive that I am not the only mom who saves a shirt or two. So I decided to make three piles: one for tailored clothes that other LP’s can wear, one for clothes never tailored and will go to charity and one for the clothes I will someday make a quilt out of. (Considering I don’t do his tailoring, it is unlikely I will ever learn to sew well enough to make a quilt.) The pile of clothes for quilting was growing and growing as I folded each one and remembered different times in his life. Once I’d finished, I realized I had better thin that pile down. I know I cannot hang on to everything; but still, it is so hard to let go. Knowing that someone else could use them made it easier and by the end of the afternoon, I had made that stack the smallest of the three. I was packing the last of the charity clothes into a box when I glanced over to a picture on his wall. It was Jax and his uncle. He was wearing a Chicago Bears jersey his uncle had bought for him that day. On his head was the oversized helmet he’d gotten as well. He only came up to his uncle’s knee in the photo and the shirt practically dragged on the ground. I chuckled out loud at the site of that silly helmet covering most of his head. I looked around toward the opposite end of the room and saw the helmet there in his toy basket. Very few moms can say their child has had a shirt that long…and worn it that entire time! At first, as pajamas, then as a shirt, now in a box headed to charity. Suddenly, I found myself digging through the packed clothes like a kid digging through a cereal box looking for the prize. (Not that they do that anymore.) Finally at the bottom of the heap, I found it. It still looked so fresh after all of this time. Jax looked up from what he was doing. “Mom, you can’t keep all of them.” He said. I grimaced a little; which soon smoothed out into a slight pout. Finally, I put the shirt back into the box. “I-we-um you still have the helmet…” I said with a deep breath. “Well, that’s the last of it, time for dinner.” I picked up the box and stacked it on top of the others. I then picked up the bin of the memory clothes. “Alrighty then, go wash up!” I said and watched him race out of the room. I followed, but not without stopping to grab that shirt back out of the charity box and stuffing it into the bin. Someday I’ll learn how to quilt, I’m sure of it.

About Us

I have a son who is funny, adorable, smart and just happens to be a Little Person.  He was born with Achondroplasia; it is the leading cause of dwarfism. Thanks to many hard-working and talented people, the public at large has become more familiar with persons of short stature.  Still, there are many misconceptions, misunderstandings and questions that average stature people have. I’d like to answer some of them.

• Around 80% of babies born with dwarfism come from average stature parents.
• They are of the same intelligence as the more general public.
• They are surgeons, lawyers, teachers, athletes, artists, journalists, and almost every other profession you can think of.
• The unemployment rate is higher than any other able-bodied group of people.
• The “M” word, or “midget”, is offensive to most little people. It does not refer to any one type of dwarfism. It is just a bad word.
• My son has a disproportionate type of dwarfism, that means his upper arms and legs, for instance, are shorter than average. He is perfectly proportioned for who he is, but is not the same, proportion-wise as taller folks.
• Persons with Achondroplasia, (Achons), compare equally in intelligence, talent, and ability to get the job done.
• Achons have medical issues, but rarely ask for assistance. They do have the same life expectancy as anyone else.
Those are the some of the facts.

Here are some myths:

• Little people love poking fun at how they appear to others.
• Little people only date other little people.
• They must agree with being called a midget or treated as one because they are always on t.v. dressed up as funny characters.
• Dwarfs cannot handle themselves in the workplace; they scare clients away and are always absent. They need too much special equipment.

After over 10 years, of being a member of Little People of America, I’ve never met so many people with the high work ethics, lust for life and just plain stubbornness to do whatever needs to be done, as I have in this organization.

I answer questions on a daily basis, practically, about my son. Once I answer their questions, I explain to them that he is probably the only little person they will ever meet in their lives. This makes them smile, they are happy that I took the time to answer their questions. And they usually walk away with a special look on their face like they’ve just been let in on a really cool secret.
If my son is the one answering the questions, the reactions are amazing to watch. People want to shake his hand, and thank him for talking to him. Rarely do people end our encounters with the same attitude they began them. They don’t say “Well, I’ll pray for you” or “good luck to you”. They end as all conversations should, “It was nice to meet you.”

My son and I were talking about it one day, and I told him that it won’t always be this way. “Not everyone will like you.” I told him once. (He thinks he’s all that so he answered, “Who wouldn’t like me!”) I asked him to Google the “M” word. He looked at the millions of results with his jaw dropped and, after a few seconds, burst out laughing and said, “They think we’re aliens!”

I guess to a young boy, with a giant ego who’s not been out in the world yet, that can be funny. He will find out, it’s not. He thought we should call everyone and tell them he’s not an alien….I said that would cost a lot of money. So he said we should go tell my friends on Twitter and G+ and Facebook and he said he’d tell his friends at Boy Scouts. I told him that was a great idea!

Soooo….

I am gathering colleagues, friends, celebs, and supporters and asking them to help us tell people all about little people. I am asking them to gather their friends as well. My proposal is to have an awareness event in Chicago, a town close to my heart and central to the country. I am asking each one of you to jump on board.
The personal response by email, phone calls, and visits is already incredible and is much appreciated! I will keep asking for supporters and volunteers of time and talent to join me.
My son asked, “If people want to know, shouldn’t we help them to become aware?”
Well, you already know my answer…so, join me!  We’ll have a lot of fun in a great city and do some good!