The Christianville Spirit: What's it's like having PTLS

The Christianville Spirit

The Spirit that Opens Your Eyes

November 28, 2012-TCS # 327

So, This Week’s Newsletter is a PTLS Parent-submitted idea that I’m going to take a shot at. You See, The question does come up every now and then about “What is it like to have PTLS” or “Why do you love having PTLS.” Now, for Me, I’ve lived through it my whole life but, I found out when I was 8 Years Old. The Doctors and My Mom told me I was unique and that I had something called a “Duplication of Chromosome 17” but, again in my 8 Year Old mind, I just understood that I was unique in some way. I was very proud to say what I had (and, I still am proud) but, I had a hard time explaining it to people, yes even Today. Of Course, My “PTLS Sister” will tell you what she has and tells you what she knows about it and says to “look it up”. Quite Frankly, though, I think that’s the best idea to do. However, when I was a High School age, we didn’t have a website or let alone ANY Information about it. Now, to answer the question of “What is it Like to have PTLS?” to me, It’s not a big deal that I have Special Needs (I am aware of it though) because I believe it makes me, Me. The best part about it that makes it a big deal is having PTLS Family Members all over The World. Of Course, with everything, it has Pros and Cons about it, just like Chicago O’Hare vs. Chicago Midway Airport, Irrelevant I know, but I wanted to stick that in there. Generally though, There are some wonderful perks to it, like that You don’t judge People by their looks or their story because we see the good in People, We have No Filter, which can be a good thing or bad thing depending on who you are listening to, and we love anyone and everyone, unless they really hurt us, then we don’t understand why people would be so Mean. If it were up to us, we would hug every person that looks Sad or who just feels sad. Then, there are the not-so-perky parts of it; the #1 less-perky thing about PTLS is the Anxiety. Anxiety can come from different sources like Trying New Things, the Doctor’s Office, or Irrational Fears. By The Way, We do have Irrational Fears that we go through, where it comes out of nowhere, strikes, and then goes away after a while. The next thing is Imitating, which can be Good or Bad depending on who or what your imitating. And the final one, It’s a pain when people look down on you, as if you are dumber or less-able than them, It’s where and why people call us, the dreaded R-Word. At Least, for me I get offended whether someone calls me the R-Word directly or indirectly. Even if they use it in a funny way like “That’s R-Worded” to mean that something is funny (I’ll save you from hearing or reading the word itself, but you get the point). Bottom line, I Hate that word. And Yes, I had a friend who did that a lot and I’m sure still does. So, He’s not My Friend anymore. As far as, Why do I Love it? Because it makes me unique and I love my “Uniqueness” plus, there are lots of Understanding PTLS Members all over The World and it gives me an excuse to visit those places. Understanding though, is the Most Important (I mean it with emphasis) part of having PTLS or Having someone with PTLS, whether it’s your son, daughter, cousin, or friend. Unfortunately, in some families, including my own, it’s hard for people to Understand. If you have Friends or Family that do understand, Never let them go and cherish them, because they will be your ringleader and on Team “Insert Child’s Name Here.” You need Cheerleaders in the times when we are Bullied or made fun of. I know I had Friends that protected me when I was younger but, didn’t know why. I didn’t know what a bully was until I got older. Now, I’m aware when people aren’t being nice. But, it doesn’t happen very often, thank goodness. So, all in all, just because people see me as being “Special” doesn’t mean, I’m not able.

Thanks for Reading The Christianville Spirit. Embrace your Uniqueness because We are all special in our own way.         

The Christianville Spirit: Christian's Best Friends' Festival 2012

The Christianville Spirit

The Spirit that Open Your Eyes

November 21, 2012-TCS # 326

So, Around this time every year, I have a Festival from November 16-20 called Christian’s Best Friends’ Festival. What is Christian’s Best Friends’ Festival, You ask? I like to tell people that It’s My Way of thanking the friends that I have. You See, In my made-up City of Christianville (Hence the name of This Newsletter and Where it is from), I have this festival in which is spread out over 5 Days, with “Days” to honor my Friends and on these days I have a theme for them which includes the things that they like. For instance, I named the first day after My Brother, Michael (after the name had been changed, over and over). On Michael Day, besides the opening of the festival and Presentation of Friends, I follow it with “The Parade of Michael Centeno” which has all the things My Brother likes on floats, including Michael himself. However, the “Friends Days” aren’t the only way of honoring my friends; I honor them by the Presentation and Introduction of Friends. The Presentation of Friends is for not only the ones with themed days but, also a count of the long-standing friends. The fun part then comes with the Introduction of Friends, which means the friends that I made that year, like Sabrina Yep and Ken Lu (“My Museum Buddies”); Sam & Vickie Sample and Kytha Higgins(“My Train-Riding Buddies”); My PTLS “Sister”, Danielle; My #1 Fan, Lynne Neff; My Neighbor Woody & Robin; Neighbors down the street, Paul & Alyson, as well our other neighbors that join in our “2nd Saturday Gathering”, just to name a few that were introduced. I have had this Festival in Christianville for 7 Years now; It’s an honor to me to have the great friends that I do and I’m sure it’s an honor to them that I honor them. It’s Important to me to thank them and to show how important THEY are to ME. Wouldn’t it be a nice world if we honored our friends for a week-long celebration? For You, PTLS Parents, I would like to explain how I celebrate this. First, I have it marked on all my calendars, saying either “Christian’s Best Friends‘ Festival” or the festival Name and who’s day it is. The night before, I put up “Day Markers” that tell me who’s day it is on the wall. The Morning of, I wake up and I make the announcements in my head, which is like talking on the radio, of all the festivities and the sounds that go with it (like Cheering, The Band, The Sounds of the Doors Opening as the people walk through them, The Voice of the announcer on the street, announcing “Ladies and Gentlemen...”). Again, In My Head, I listen to the Christianville Radio Station,     97.9 WPSKI (call letters meaning Potocki-LupSKI), on this Radio Station, they have a Morning Show from 7-9AM called “What’s Going On Here?!?!”, with the Tag Line, “Christianville’s News & Laugh Show”. Every Day but, Friday, they say, “Good Morning, Christianville! Today is (says Day and Date) and Here’s Your News” and on Fridays, they say in an excited way, “Gooooood Morning, Christianville!!, It’s Friiiidddayyy!”. From there, they tell you the news which includes what’s going on in the Best Friends‘ Festival. So, Parents, If you’re wondering, what your child might be talking to themselves about, they might be just having their own wonderful festival. All in all, The Festival was a great success this year.

Thanks for Reading The Christianville Spirit. Everyone should thank their friends in a Special Way.    

The Christianville Spirit: Being Classy is Cool

The Christianville Spirit

The Spirit that Opens Your Eyes

November 14, 2012-TCS # 325

So, This Week I’m going to discuss something that My Family, being The Smith Family cares about. It’s about how much Class you have, which has nothing to do with where you live, how much money you have or don’t have, what your job is, the color of your skin, who your married to, or anything else like that. It means how you handle yourself. Now Honestly, I’ll tell you I wish there wasn’t a divider like Class and everyone was Loving, Good, and Real, that’s the way I see it. Now, for those who wonder, I will never judge you based on that, you’ll still be a friend to me. The only exception to that rule is if your hateful, bullying people, or dabbling into Trouble. Trouble which I wouldn’t want to go down that road. In Our Family, Whenever someone is behaving in a bad manner, we say, “That’s Low Class.” To us, though, having Class is a very important part of what makes people so charm-able. In Fact, My Grandma Honey calls it, “Being Genuine and Real” because everyone is attracted to these people because they are Warm, Loving, and Welcome Everyone.  Anyway, I made up my own Class Scale to determine how Classy someone is or isn’t, again I should note here, No Judging. This is purely my own. So, it’s numbered from 100.0 to 0.0, 100 being the Most Classy and 0 being the Least Classy. So, here is the Class Scale,

• From 100.0 to 85.5 are the “Highest Class” of People, very behaved, very loving and very real. They are the people who are very honest, Good Morals and Values, They try to make people feel good, and Good People in the community. They are the person everyone loves. I would put myself, as well as Many PTLSers on that list.
• Next, we move into the “Classy” stage, 85.4 to 65.5, These people are Classy, a little less behaved, this margin is where people start being less honest, less caring, and less liked
• Then, we move into the “Mid-Class”, 65.4 to 45.5, These People are less real and genuine, Behavior can swing from good to bad, when they talk, it’s questionable whether they are telling the truth or lying, they are clever liars and people don’t want to be around them as much.
• After That, is the “Low Class” margin, 45.4 to 25.5, These people are always calling people names, lying to people, don’t care about people’s feelings, hurt people and animals, and this makes God really upset
• Finally, the “Bottom of The Barrel” as My Mom would say or “the Lowest of The Low”, 25.4 to 0.0, These people are the murders, the thieves, they abuse Animals and People, Have a hard time being excepted by other people. These people need a lot of love to help them.

So, I make it my job and I hope you do to, to help bring people up the scale of class. All in all, I say, “All we need is Love!”

Thanks for Reading The Christianville Spirit. In the words of My Mom, she tells me, “Life is like a box of chocolates, each piece needs to be eaten and not left behind!”  

    

The Christianville Spirit: If I were President

The Christianville Spirit

The Spirit that Opens Your Eyes

November 7, 2012-TCS # 324

So, Considering that Everyone is talking about and sharing their view on US Politics, I figure that I would put my own twist on it. However, instead of writing all about The Election and The President, I’m going to take a different road. You See, the thought occurred in my mind sometime ago and then, I was reminded when I read the wonderful post on Facebook about Daniel Honda for President. I was really excited and thought, “YEA! A PTLS Child for President!”. So, I thought of what I would do if I were President of The United States. So, here we go, what would I do if I was President. Of Course, there are many things going on that I could change, for instance, I would make sure that Everyone had Health Insurance, that they could choose on their own and If it comes from the job they have, then they can choose from what the company does or what you want. For Illegal Immigration, I would have a “Stay or Leave” Condition, which meant that If you want to stay here in The US, You must get citizenship, Pay Taxes, and Speak at least Half English compared to your native language. I would love for you to keep some of your language to add a little flavor to the culture pot of America. If you choose not to do those things, (not to sound mean or anything but..) then you will need to go back home and come back for a visit. In the Jobs Sector, I would encourage people to find what their passion is or what they love to do and go after it. My Belief is that if You go after your passion then, Everyone will have a Job to do. I would really make sure though that Jobs stay here and Things are made here in America. In the Debt, I would cut spending and Tax heavy on the bad stuff like Trans Fat, High Fructose Corn Syrup (yes, that’s a big word; I know it because My Mom and Brother mention it a lot) and Cigarettes which would make the Government money and which in turn would Pay off the debt. I would incorporate Hugs as Currency in exchange for some things like Groceries, Electricity, Water, and Phone Bill. I would incorporate a PTLS Holiday called “PTLS Awareness Day” to be on March 7 because it was the day that PTLS (Potocki-Lupski Syndrome) was named. People with Special Needs would get the services they need and their seen as Honorary Members of Society. I would believe that if you say your going to do something, you do something. It’s called “Say what you mean and Mean what you say.” The next one most people don’t think about until it is brought up to them, I would make that there were Anti-Bulling and Anti-Hatred Laws in Every State. Truth is, there is quite a bit of separation in our country, let alone The World because of Bulling and Hatred. I Mean, without Hatred we would all get along and be at peace with The World and the funny thing would be The World would be at peace with all of us. After all the debt is paid off, I would make sure that those really poor countries like Haiti and Nations in Africa would get money and food to help them until they sustain themselves. As for The Military, I would pull them out of Afghanistan and elsewhere for 2 reasons. 1. To give them a little break to be with their families and 2. I read in a magazine once that the less countries we occupy, the less we get attacked and the less Suicide Bombings. Then, there’s Oil. The World would use it until it’s gone and then, we switch to Vegetables and then, to Hemp, because Hemp powered cars much better than Oil or Vegetables. Finally with Social Security, I would keep both Medicaid and Medicare. Considering that Everyone would have a Job and Health Insurance including those with Special Needs, not many People would have to have it, only the people who really need it like the elderly. I can tell you though that things will certainly be organized with me as President, because of My OCD and needing structure and needing routine. Things like the Tax Code would be so simple because I would bring the code down to 1 Page instead of the 100’s, you could do it in an hour. All in all, Things would be very simple, Organized, and Loving...if I were President. Of Course, it wouldn’t be a good team without Daniel Honda as Vice President.

Thanks for Reading The Christianville Spirit. PTLS for President!