Monday, October 28, 2013
ELMER ANSWER'S YOUR DWARF QUESTIONS
I am not a doctor, so what I am telling about medical here is what I remember from way back. When I was in my early teens, I read all the medical books, articles, etc. I could find on Ellis-Van Creveld Syndrome. Medical science might have changed since then. But here goes. If both parents have a recessive gene trait, the chance of their child getting the gene is 50%. If only one of the parents has the gene, the chance of the child getting the gene is 25%. The chance of a child not receiving a gene is 25%. Dwarfism could skip generations. Yes, later when the family has long forgotten it was in the line, it could reappear.
Ellis-Van Creveld is more in Old Order Amish in certain areas. Where we have intermarried (married distant cousins), Ellis - Van Creveld is more prevalent. But, Old Order Amish are not the only group to be born with it. There are Englishers, Mennonites that also have Ellis-Van Creveld in this country and other countries. It doesn't matter if your skin is white or black. It was in other countries before it was brought here, when we migrated to this country.
The lady that Sue Ann spoke of in her comments in my previous post could very well have had Ellis-Van Creveld or another dwarfism syndrome - it does sound like Ellis-Van Creveld. My fingers are more chubby than people without the syndrome. The former school girl has shown that even with dwarfism, she can have children and accomplish a lot in life.
What are some things that irritate me regarding people? My major one is when a child says something like look at the man and the parents pull the child away like I am sick or something. I would like to talk with the child and explain that even though I look different than other people, I am just like everyone else. Lots of people are different in this world. Another thing that irritates me is when people stair or talk about me, like I am not there. I know people will look at me when they first see me, I am use to that. Like Anna and I went into a restaurant to eat. At a few tables over were a couple that kept stairing at me and talking about me. Like I said, I am use to it when I go some place, but they kept it up. I wanted to go to the table and speak with them, but Anna didn't want me to, so I didn't. They finished their dinner long before we did, but didn't leave until after we did just stairing at me and talking about me - saying I was a poor, poor man and how sad it was for the lady with me. I wouldn't have gotten angry with the people, if I spoke with them, I would have just answered their questions so they could enjoy their dinner and we could enjoy ours. On the other hand, is the people that ignore me. Anna and I go in store, Farmers Market, etc. and people talk to Anna, but ignore me. Now, Anna can talk to who ever she wants, don't get me wrong. For example, Anna and I are going to a Farmers Market and I ask how much something is and the clerk turns to Anna and tells her. Anna would say, my husband asked, I didn't, tell him. Being a dwarf, I expect people to stair or talk about me, so don't feel bad if you do, but don't keep stairing and talking about them for next fifteen minutes or half hour. Now that I have that off my chest, I'll go on.
I have trouble reaching, too. An Englisher neighbor, who is a nurse brought me a grabber that you can reach things higher up with, but it didn't have the best grip. What we did find is one called the Gopher. It is a medal grabber with a plastic handle and that is great. You can pick up a penny with that and it holds more weight than most grabbers. Anna saw it in some mail order catalog. I have one in the basement, the kitchen, the barn, and the bedroom. Even have one in the buggy - I never know when I might need one. I can't remember the price, but it wasn't bad and I think they had a two for one sale. Just thought I would pass in on to anyone short out there.
Old Order Amish and Mennonites believe all our children are gifts from God - even if they are a special child. Now, that being said, having lost one dwarf child, my Mother was sure she was going to lose me, too, so she was kind of over protective. She didn't want me doing certain chores, play certain games, go certain places, etc. My Father, on the other hand, after hearing the doctors report that I didn't have the heart condition that my brother had, felt that I should be treated as a boy like my other brothers. I know there were arguments between my parents over what I could do and couldn't do. At the time, I thought my Father was strict, but now I am glad he made me learn all chores, let me go where the boys did, and more. I learned.
Children will be children and in school, some of the other kids did pick on me. I wasn't good in sports so was always the last chosen in school games. Not all were that way, but some. My brothers, I think, were the hardest because I was getting favors they weren't - until we got older and played it to our advantage. Like, if I wanted to go some place and they couldn't - I always came up with an excuse that I needed at least one of them with me. My parents told me that if they knew then what they know now. LOL
I didn't really realize that I had a lot of obstacles in my life. When something came up, I just learned how to over come it. I remember my Grandmother, she's with the Lord now, would put me in a high chair at her house as it was all she had high enough for me to sit on at the dinner table. Finally, I wised up, and brought a couple of thick phone books with me and would sit on them.
During my early teens, I went though this feel sorry for me era. All my friends, and brothers were tall while I was small. What really got me was when I had gone to party, had been drinking , smoked cigarettes and came home. My Father took me out in the barn, turned me over his knee and paddled my bottom. He couldn't have done that to my brothers, as they were bigger than I was. He would have just lectured them. Father told me, I could go through life with a chip on my shoulder and feel the world owes me a living or I could do as the Lord wanted and live as close to the Lord's way as I could. I had to decide if I wanted to live with a frown or a smile. It made no difference how tall or small I was. But I better decide quick. It took me a while, but I decided to live the Lord's way. I'm glad I did.
As a small person for a Dad with average size children, was there a problem in discipline? Not really. I worried about that some, but as the children came they knew that I was the head of the house. Although I do remember one of my teenage sons giving me a hard time about I couldn't discipline him. I didn't like the paddling idea so I thought of other ways. We were painting the house and I made him go up the ladder to paint the point of the house. That would have been okay, if he didn't have a fear of heights-he doesn't now. Despite what you see in movies and at barn raisings, not all Amish men can climb to the heights of the barn. They fear heights. More than once, I have had to go up on a ladder to paint the point of an Amish, Mennonites or Englisher persons house because they were afraid of heights. Anyway, that took care of my son and I never had problems again.
How did I get my sense of humor? I believe it was a gift from God. I did have a sense of humor as a child, sometimes not in the way it was suppose to be (doing tricks on people, etc). After my I feel sorry for me era, I realized what my Father said, and have tried to take his advice through my life. I am glad that my Father is still here and can see that I did listen to him-eventually. I do enjoy talking and speaking to people. Being a dwarf, I want others to know, that we are like everyone else, just a little shorter. We have our happy times, sad times, good times, and bad times. We are only on this earth for a short time, we should do the best we can for the Lord, while we are here.
I have spoken to Amish, Mennonites and Englishers. Been to conventions, schools, hospitals and just speaking to people I meet. Don't mind if people come and ask me questions. Spoke to people who had a dwarf child and thought it was almost the end of the earth for the child, not medical problems, but because they were small. Medical problems they can mostly fix, but being small you have to accept. Like, my parents, I have found that people are worried about their child, more so than parents with average size children, which I understand. Doctors can answer a lot of questions, but sometimes it is better to speak with a dwarf person to understand that their child can have a life like other children.
Well, I think I am going to end this post here. I will answer the rest your questions in my next post.
Trust God's Wisdom,
ELMER WILL ANSWER THE REST OF YOUR QUESTIONS ON FRIDAY, NOVEMBER 1ST.