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Extra Effort Award
The Christianville Spirit
The Spirit that Shines Brightly
March (Marzo) 12th, 2024 – TCS # 848
Welcome Back, My Readers! Welcome Back from An Absolutely Amazing “PTLS Holiday” known as Potocki-Lupski Syndrome Awareness Day, known to PTLS Family Members as either PTLS Awareness Day or just PTLS Day for Short. Before We get to This Week’s Newsletter, I want to Thank All of My Awesome PTLS Family for Helping Spread Awareness and Of Course, Wearing Green and Showing off their PTLS Gear! Of Course, Thank You Very Much for Any and All Donations to The PTLS Foundation as well as All Fundraisers to Raise Awareness for PTLS! And, Now, I Present, A Special Duty that I felt that I could have Fun with. Giving out Awards for The Greatest PTLS Family Members who I feel Outshined the PTLS Awareness Genre.
PTLS Day Awareness Awards
An Extra Effort Award for This Year goes to:
Grandma Honey and Her Dog, Jaz. Jaz is Laying on Grandma Honey’s PTLS Blanket over The Couch in Her Famous Sunroom (Bonus Points: The Sunroom is Green!)
The Best Creativity Award goes to:
PTLS Family Member (and, Entire Family) in Portugal who took a Drone Shot of Themselves in a Heart-Shaped Circle with The PTLSers themselves in The Middle.
And, Finally, The Best Version of Awareness Award goes to:
PTLS Family Members’ The Glica Family from Croatia (HR). A Sign form Hand Prints from The PTLSers’ School in The Shape of a Flower.
So, From The Bottom of My Heart, It means a lot to Me and I Thank You!
So, onto This Week’s Newsletter!
Anyway, so This Week’s Newsletter is going to be a Real Treat, a Double Feature! Yes, My Readers! A Double Feature!
Consider It My Treat and Thank You to You for Being There and Helping Raise Awareness for My Special Needs known as
Potocki-Lupski Syndrome (PTLS).
So, A bit of a Back Story, A Couple Years Ago, I wrote Two Gold Newsletters that answer a Very Important Question that PTLS Family Members have, but might be too Afraid to ask and Hear the Answer to...For They fear that The Answer to Said Question may or may not be either The Answer They are looking for or The Answer They are wanting. However, I can assure you that The Question and Answer is not that bad. But, do take The Answer in Slow Segments. The Question is, of course, “What is it like having PTLS?” and I feel that These Newsletters explaining it should be a Christianville Classic! So, without further a due, This is The Christianville Classic, What It’s Like Having PTLS (Parts 1 & 2). As a Reminder, All of My Christianville Classics are listed on My Newsletter Site.
What’s It Like Having PTLS? (Part I)
This Newsletter was written on November 28th of 2012 (Refer to Newsletter 327 or Classic List)
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 (Editors Note: I was Interested in Comparing The Difference between The Two Airports), 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.
What’s It Like Having PTLS (Part II)
This Newsletter was written on December 5th of 2012 (Refer to Newsletter 328 or Classic List)
Well, Happy December, Everyone! This is My Most Favorite Month of The Year, more on that in a couple weeks. This Week, however, is sort of an extension of the question, “What is it like to have PTLS?”. I forgot to mention about 2 other major things about PTLS, that would be Imitating and Obsessing (we’ll call it OCDing) because we PTLSers have an Obsessive-Compulsive Disorder behavior sometimes. Now, I had a whole thing about Imitating, I figured that I had mentioned it enough in My Newsletters, but to my surprise and yes, some humor, You wanted more about Imitating. Last Week though, for those are new, I had written a little blip about Imitating and what it is like to have PTLS. So, anyway, let’s get to it! Imitating can be a good or bad behavior, depending on the source. Now, before you start asking, “What is the Source, you say?”. Well, The Source is what we’ll call, where the Imitation is coming from and there are many. The Main Sources that I look at when it comes to explaining is The Parents of The Children, Friends (Both Childs & Yours), Other Kids (Other Kids have a greater influence though), and Things on Television. So, considering that we listen to everything, whether we’re talking or not, we will eventually Imitate the things that we hear you saying or doing. The Best Rule to follow is if you want Good Behavior, put them around things of good behavior, in all the main sources. And, the same thing goes for the opposite side. So, If you want your child to talk and I know many PTLS parents do, than you put them around normal kids who have good behavior. Here are some examples, When I was little (like 3 or 4 Years Old), The School that I went to, there was a kid who pinched people, so I started pinching people, so the teachers had to move me and the kid away from each other. For Eating, I didn’t eat very well but, I sat at a table with kids eating fruit and I started eating off their plates. I got in trouble but, My Mom was happy that I was eating. I learned to jump on The Trampoline, only when there were kids jumping on it, That was the best thing for Me. When the Speech Therapist would say, “Look at me” and turn my head towards her, I would do that to people who weren’t paying attention to me. I would turn their head and say, “Look at Me.” It’s not a big thing but, it was a big part of how I learned. As for Me, I have Imitated since I was younger and I still do but not as much as I did when I was younger. When I was learning to talk, I would repeat the other kids, and they would tell me to stop repeating them. I did not know why they would get so angry with me. Usually, it takes a little while before I start to pick up whatever behavior I’m watching. Even the 2 Girlfriends I had, I Imitated their behavior; I talked like them, I thought like them, and I behaved like them. Anyway, now we move on to what can be (to outsiders and PTLS Parents themselves) an annoying habit, The OCDing. We PTLSers Obsess about different things; People, Objects, Interests, and Thoughts. So, usually we find something that interests us and we start to Obsess about it by thinking about it, talking about it, and researching things about it. The annoying part of it is that we don’t stop talking about it or researching until something new sparks our interests. For Example, After I spent a long time Obsessing about Ali, she was My 1st unofficial Girlfriend, I found everything with the name Ali in it and drove my Mom and Brother crazy always talking about it. After I broke up with her, I started Obsessing about New England, which was a nice change for everyone around me, but then it was a problem. Which to most people would think is healthy to think about other things besides the girl that you were with. Honestly, I believe that it helped me with getting over her because she was a nice girl. Anyway, I believe when I was around 7th Grade or so, I would pick a City or State to obsess about and they were odd places sometimes. Besides Atlanta, where The Smith Family lives, I would obsess (well, not really obsessing because I love Geography, but anyway..) I would Obsess about the places in between like Alabama, Mississippi, or Houston. In my head, I pretend that we lived in where ever I was obsessing about. When I was Younger, like back what we now call “The Mr. Jeff Era”(from 2nd to 5th Grade), we had a creek in the backyard and considering that I had gone to Laredo and Nuevo Laredo, Mexico with My Dad, I would pretend that Mr. Jeff’s House was the Welcome Center into Laredo, Texas, The creek was the Rio Grande River and, My School, Harrington, was in Mexico. I’m sure, My Childhood Friends hadn’t heard about this until now, or at least I don’t think. The tall-tale sign of what your child or myself are obsessing about is mentioned a lot whenever we talk about things over and over again, and never get tired of it. I have to be told to stop and move on to some other topic. Further toward My Present Age, If you have ever had a conversation with me, you would notice I’ve obsessed about Places like New England (like Vermont, New Hampshire, and Maine); Norway & Sweden (My Neighbor, Woody, and I have discussions about that a lot); The Caribbean (like Jamaica, The USVI, and St. Martin & St. Barths; How News, The World, History, and Politics all tie together; and of course a share of Girls including Girlfriends I’ve had, Girls I like, and of course, My Future Soulmate. I should also mention, if you haven’t noticed, that we like to repeat ourselves, it’s another thing that we PTLSers do called Repetition. So imitation is often when we are young, but not so much when we get older. OCD behaviors help me to stay focused, so I guess it is a Good thing. Repeating myself and talking about my Obsessions, Well, that might drive others crazy, but I like it and so I keep doing it.
All in All,
if your kids are imitating, hopefully it's all good things. If they have OCD behavior, be patient with them because it helps them to fell in control and stay focused.
Thanks for Reading The Christianville Spirit. We all have our quirks and good reasons for them. Love us anyways.
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