The Christianville Spirit: My PTLS Awareness Month Closing

The Christianville Spirit

The Spirit that Makes You Wonder

March (Marzo) 29th, 2017- TCS # 539

Ahoj, My Readers! That is a Greeting in Czech that means “Hello”. Well, My Awesome and Brilliant PTLS Family Members and Friends, We did it! We spread awareness far and wide of Potocki-Lupski Syndrome. Like a Mother to Child saying, I am so Proud of You!! The Best Mentions was All of PTLS Family Members wearing Green on Potocki-Lupski Syndrome Awareness; We had an Ice Cream Social with Our Neighbors on March 11th to Celebrate The Day; My PTLS “Aunt” Angie had People donate to The PTLS Foundation on My Mom’s Birthday and That was The Sweetest Gift Ever; and, Just telling People about PTLS. The People that, at least I feel, did The Most Honoring was both of My Neighbors, Miss Patty and Miss Kelly. After My Mom told Miss Patty about PTLS (who writes a Mommy Blog, Shout Out!) and between Her and Three Kids, They have been spreading The Word about PTLS. I really appreciate it and It means a lot to Me! They wore Their Shirts many times This Month. Best Neighbors Ever, I tell ya! Sometimes, The Active Neighbors, The Ones that You would not expect to be so involved in a Cause that is Near and Dear to Your Heart are The Ones that You are Most Surprised by. Everyone should have Active Neighbors in Your Neighborhood because otherwise, Your Neighborhood would be Boring. Anyway, enough about Praising My Awesome Neighbors! Sometimes, People forget that It is not just PTLS Awareness Month to spread Awareness about PTLS, In fact It is All Year. So, Don’t be Disappointed about PTLS Awareness Month closing because PTLS Awareness is All Year Long. Just Remember that Shirt Sales only go for so long and They are going on for 10 More Days and that is it. Then, They start up again in January. Be Ready, Folks! So, Let’s Focus on Something in PTLS that not Many People would believe until You told them. PTLSers are in Fact Very Smart! When It comes to Whatever Interests them, They excel in It. For Example, There was a Time that I was into The Stock Market. Well, Okay, not into it, like Investing, but Into it meaning, Keeping an Eye on it. Actually, I still do that Every Day, I check the Stock Market to see where it is. I even check My Mom’s Home Depot stock that She invested once. It is interesting to watch them go up and come down, and Vice Versa. Who would have thunk that I would be Interested in How Geography, History and Politics (World Events) mix together and Believe me, They do! It amazes myself because There was a Time that I hated History, It is only about Dates and When this or that happened and Geography is Where Some Place is, How could they mix? But, If You look at How Something happened in One part of The World effected Something else in The World, It is Astounding. As well as, If You look at Any Political Event in The World, It’s Geography, and Possible History in The World, You would see how it all comes together. So, Here is why People forget that PTLSers are not Smart or Intelligent and They underestimate our abilities. The Diagnosis stops them. or at least, that is What People think anyway. So, In turn, We are limited. Now, I understand that getting The Diagnosis can be Hard (as I am sounding like My Mother for a Minute), Can be Challenging, and Very Hard to accept. Believe Me, I have seen PTLS Members stop at The Diagnosis and Halt the Brakes. No, I am not going down that Strange Highway to a Place I have NO Idea where I am going! But, Believe Me, You find some cool stuff on That PTLS Highway that You probably never would expect to See. However, If You drive down The Highway completly unlimited, Your Child will be so Beyond Brilliant that as My Brother would say “You don’t even Knoow!” So, Offer an Opportunity for us to Learn, Give us a little Push (Okay, a Gentle Harder Push because We are stubborn!) All in all, We can do More than what You think! Hope is always a Great Thing, but With Us, Learn to Expect Great Things. Just ask My Mom, She’ll give You all the Tips!

Thanks for Reading The Christianville Spirit. Believe that We are Geniuses and We will prove You Right!

The Christianville Spirit: Multi-Birthday Party in Atlanta

The Christianville Spirit

The Spirit that Makes You Wonder

March (Marzo) 22nd, 2017-TCS # 538

Happy Spring, My Readers! Yes, Folks! It is Spring! Time for Growth, Time for Warmer Weather, and No More Snow. Even though, Us down here in Dallas, only got Ice once This Winter, but Maybe Next Winter we will get more. Anyway, so In The Month of March (Marzo, I like to call it), My Grandma Honey, All of My Uncles except Uncle Brian (Uncle Craig and Uncle Bruce), and My Mom all have Birthdays in March. Yes, Crazy, right?! Anyway, so Grandma Honey had an Idea that Why don’t we have What I’ll call a “Multi-Birthday Party” to celebrate Everyone’s Birthday all at One Time. And, Possible Bonus, Have the Whole Family meet My Brother’s Girlfriend, Nicole. Well, The Family Meeting Nicole thing did not work out because She was Busy with Something else and Her Spring Break would have been this week. But, We made do. Anyway, so We brought all of The Family to Atlanta to have a Family Reunion and also Celebrate Everyone’s Birthday while we were at it. We also brought Paco with us so that My Brother could see him too! Yes, I did get to hang out with My Brother, It was really good to see him in Person. I missed him a lot and I still miss him! But, The Most Amazing Thing happened while We were There, Me and Some of My Cousins; Olivia, Anna, Lyall, and Gram respectively, bonded more together than We have. Take Olivia, She lives up in Ohio and I rarely see her, but She is Very Smart for Her Age, curious about The World and How it works. Her and I took Paco on One of Many Walks through The Town of Norcross, and We talked about The World and She even asked about PTLS. I thought that was So Awesome! She asked me if There was anyone else who, in her words, “Had what I had” and I told her that Yes, We are represented in 45 Countries and have One in 20,000 Children, and There are a lot of People who are like me. At first, when She asked, I was shocked! Like “Where did that come from?”. But, I was Very Proud to tell her about it and I am proud of Her for Asking about it. Gram and I always bond about Different Things, Family being One of Them, as well as Interests in Transportation, Airplanes especially. Lyall, who lives in Florida, again I don’t get to see that often but, We bonded during a Game that All of the Family played. We played a Game sort of like Scatagories, only You hold a device and It is Timed. We were separated into Teams and Lyall (who was on The Other Team) helped me figure out what Category to do. I actually did Very Well without saying The Word and Trying to get My Team to guess The Word that I was trying to Convey. I am quite Proud of Myself for doing that! The Two Coolest Things that We did there was We FaceTimed Nicole in and All of the Family met her, and When it was Time to take The Family Picture, We took it via Uncle Craig’s Drone. It was The Coolest Thing! I had never seen a Drone fly in Person before! Uncle Craig showed us how it works and Flew over The House. All in all, It was really Awesome to see Everyone (including My Brother) and We had a Really Awesome Time!

Thanks for Reading The Christianville Spirit. Spend Time with Your Family. You never know what You could learn! 

The Christianville Spirit: My Brother's View on Me Rerun

The Christianville Spirit

The Spirit that Makes You Wonder

March (Marzo) 14th, 2017-TCS # 537

Welcome Back, My Readers! I hope that You had an Awesome PTLS Day! I know I did! My Facebook Feed was The Greenest that I have ever seen! Thank You Friends and PTLS Family Members for Wearing Green. Yes, even My Neighbors wore Green because We had an Ice Cream Social a Couple Days after PTLS Day on March 11th. A Huge Thank You for Them! I will mention all about that Next Week, I promise You. This Week however, I have a bit of Busy Week in front of Me so I figured that I do a Re-Run This Week. Now, This Newsletter, I am not sure if I have Re-Shared but, If It has not, I believe it deserves Re-sharing. You see, This Newsletter is actually an Entirely Different Point of View. It is actually The View of Myself from My Loving Brother, Michael. PTLS Family Members, They don’t make it be know too much, but They do worry that How The Siblings of PTLSers feel about Being The Sibling of a PTLSer. I am hear to tell you, My Brother views Very Greatly, but You will have to read on to Find Out How! This Newsletter was Originally written on June 2oth of 2012 (Refer to Newsletter 305). Hope that You Enjoy what My Brother has to say!

So, Now that I have written Last Week on My View of My Brother and you enjoyed it. Well, now your really going to enjoy this! It’s the long-awaited Newsletter on how My Brother views me. This idea has been in My Head for a while before I finally decided to do it. My Mom and PTLS Family Members had always wondered about My Brother how My Brother felt about me having Special Needs and Having PTLS (or dup.17p11.2, as it used to be called). The idea came when one of the PTLS Members suggested that I should do a Newsletter on My Brother and his view of it all. I mean, considering that I mention him a lot in My Newsletters, people start to wonder about him and how he deals with it. It took a while at first, getting the nerve to ask him to do this, and even the idea of what questions do I ask? Because first off, I didn’t know what to ask him or even more unnerving, what would he say? So, I sent out a post on Facebook to PTLS Members on what questions they want answered and/or curious about and I got quite a few responses about what they want to know. After reading a couple questions, I thought, “Man, these are deep questions” and “I’m not sure if I really want to know about it or not.” So, then came, “How do I do this? A talk? Dictation to My Mom? or an Interview?” Well, long story short, I asked My Brother about it and he said, “We’ll do an interview” and finally, after a while of asking him(because both he and I kept forgetting or it wasn’t the right time of day,) He sat down to answer the questions. He finished it yesterday and it’s ready to go. First, I want to thank him and let him know I appreciate his honesty and willingness to do this. So, Get Ready everyone cause here’s the interview. As a note: the Bolded Questions are from the PTLS Family and below it are Michael’s Responses. So, as they say in Television and Radio, Roll it!!!!!   

TCS: When you were about 10-13 years old, can you tell us as a sibling how you felt when your bother had an aggressive outburst? Did you truly understand what was going on with him?

 Michael: For as long as I have known him, which is practically my entire life, he has never had an aggressive outburst. For the most part if he ever got really upset he would get more emotional. He would work himself up and start crying. There would be the occasional times where he would raise his voice but nothing that could ever be put as an aggressive outburst. At that age I had already seen him do things like that before so I wasn’t to worried about it. I just figured that he was more sensitive to things then I was, I never really linked PTLS to his sensitivity. I also figured out by then he was extremely stubborn and if he didn’t want to do something, he would put up quite a fight. Which would also cause him to get upset.

  TCS: How did having a sibling with PTLS effect your life both good and things that were difficult?

 Michael: Well growing up, nobody knew what PTLS was including myself. I was told that my brother had special needs and I just took that as the literal sense. I never considered him special or different though. I treated him like my bother with no exceptions and restraints. Naturally I picked on him and gave him a hard time. The one thing that I did do growing up was take on the role of big brother. I looked out for him and tried to teach him things. Christian has also taught me a lot growing up with him. I learned from a young age that people in the world see things differently. There’s nothing wrong with looking at the world differently and having a sense of individuality. Everyone goes through highs and lows, it’s how you deal with the situation that makes the difference.

TCS: How do you deal with your peers asking questions about your brother?

 Michael: Honestly, when I was younger I can’t really remember to many people asking about him. I think the main reason was that he was always pretty friendly to everyone. No one really could tell just by meeting him that he had special needs. After a while of getting to know him or seeing him then they might ask questions. I’m always proud to tell them what’s up. I just tell them that he has this rare chromosome duplication and he was forth to be diagnosed with it. After that, some people keep questioning and are really interested others just move on to the next order of business, whatever that might be.

TCS: PTLS kids need a lot of attention/ extra help. Were you ever envious of this?

 Michael: Nope. If anything when I was younger I found it annoying and frustrating. Not that he was getting more attention then me or anything like that, it was just because I was ready to move on and progress while Christian was still trying to learn.

TCS: As a sibling was there a time say around preteen where you were embarrassed when you were out with the family?

 Michael: Not really.

TCS: What did your mom do to help you understand Christians PTLS?

 Michael: I think that the best thing for me was learning patients and acceptance. I was taught that not everyone learns the same way and each person is different. Some people require more training on particular topics. Really that advice goes for everyone and didn’t segregate my brother from other people. It didn’t hurt that my mom likes the medical field and could give me facts and explain information easier to me.

TCS: When did you realize Christian was different?

Michael: I don’t think there was really a point of epiphany where all of a sudden I knew he was different. Living with him and growing up together, you just kind of known as life. Its really the same as getting to know anyone else, you hang out with them enough you learn things about them. All it takes is some powers of observation.

TCS: Growing up, can you give some examples of things you showed him how to do/ taught him?

 Michael: Ha ha ha!!! When I was seventeen or so I let Christian drive my car down the neighborhood street. That was exciting to say the least!! I taught him how to play video games and things like that. To recall everything I taught him would take some time. I just try my best to show him and explain to him anything that he has questions about and would like to learn about. His memory is pretty freaky. He can recall all sorts of random stuff. If others put in the effort and energy to teach him, he can learn anything.

TCS: Do you feel any angst or nervousness about being Christian’s guardian later in life?

 Michael: I suppose so, it is kind of nerve racking. I’m not stressing out too much though. We get along great and for the most part he is pretty self-reliant. I am confident in my self and my abilities to overcome any obstacle that dares to stand in front of me. Ha ha ha! But for real, I have known about being his guardian for a long time now, so I’m mentally ready.   

   -------------------------------------------

So, I hope all of this helped to answer your questions on Siblings and My Brother. It was quite surprising to hear some of these because I didn’t expect it. Well, you know, I guess it’s like they say, “You’ll Never Know Until You Ask”, simple as that. This whole interview turned out to be more fun than I thought it was going to be, but then again, I didn’t know. I mean, you know, how much someone loves you but, sometimes, every now and then, you might be curious as to how much that person loves you. As for me, I know that My Brother loves me and understands me, and I love him so much for that. All in all, I say it a lot, but I’ll say it again, My Brother, Michael, is Awesome!

Thanks for Reading The Christianville Spirit. Let the ones you Love in your life, know that you love them; Everyday.  

The Christianville Spirit: Review of PTLS FAQ

The Christianville Spirit

The Spirit that Makes You Wonder

March (Marzo) 8th, 2017- TCS # 536

Happy Potocki-Lupski Syndrome Awareness Day, My Readers! Also, known as PTLS Day for Short. Happy PTLS Day! I can now say that It has been 10 Years since The Naming of Potocki-Lupski Syndrome Officially! I am “Officially” Very Proud of My Special Needs having been Named for 10 Years! So, This Newsletter is going to first sound Not PTLS Related but, Believe Me, It is! So, It is A Little Known Tradition in Most Countries, on Their Main National Holiday like Fourth of July (Independence Day) in The United States; Canada Day in Canada; Constitution Day in Norway; or Australia Day in Australia, They have What is called a “Citizenship Ceremony” where People become New Citizens of a Country. Well, I would like to think that PTLS Day is sort of The Same Thing. Now, Yes, PTLS Day is a Celebration of People of PTLS and Their Families, but, What about New PTLS Family Members that have been Recently admitted to What I call “The PTLS Union of Families”? I would imagine it would be like a Train passing by with a Bunch of People (To You, at least for the moment; Strangers) that have Children, Young Adults, or Adults in General that look like You or Your Child and One Person grabs you and says “Welcome to The PTLS Family! Let’s Get You Admitted and Soak You In The Family!” Some Newly Admitted Family Members are Ready for It! Just rip that Bandaid off and Jump In! Others though, They are pulled on The Train and They are Lost, Panicked, and Just not Sure (Which is Understandable!). Well, I feel like PTLS Day is a Day where We stop at a Station (or at least Should), Start Admitting New Members, and Welcoming Them with Open Arms and Take them along in Their Own Pace. Some like a Slow Pace of Learning Everything about PTLS and Some hop on and say “Give Me All You Got!”. Of Course, that is Explaining The Average PTLS Family Members. The Rest, They like to just Get all The Information and Hop off The Train and Go on Their Marry Way. Although, They are Part of The PTLS Family and They are Welcome on The Train at Any Time. Anyway, Whether You are New or Just Need a Re-Fresher, or Just need Hope for a Moment,   

 I am going to Rerun one of My Gold Newsletters of The Most Common Questions or Concerns about PTLS. So, Take These Questions and Answers in Whatever Pace You like. You can read the Whole Newsletter Now or Read some of It now and Some later. I do have to Edit it a little bit because This Newsletter was originally written in May of 2015 (Refer to Newsletter 450). Enjoy and Happy PTLS Day!

So, as The Late Joan Rivers would say, “Let’s Talk” and This is a “Let’s Talk” Newsletter indeed. (Joan Rivers passed away in May of 2015 and I figured that I would honor her) As My Veterans know, I often cover the Same Thing about PTLS In Introduction but, As I say, There are always New PTLS Family Members that are “Admitted into The Union” per se. But, I am sure that There are Those who have been reading a while, or Started Reading, and are Curious about PTLS. You See, When A New PTLS Member is Admitted into The PTLS Family, To be fair, They are a Bit Scared when They come in and See what PTLS has to offer. They worry about Many Simple Things that Most People would not; PTLS is Unique! Haven’t You Heard? (breaking out in Song) Da, Da, Da Bird, Bird, Bird, Bird Is The Word! Just Kidding about The Bird, It is Family Guy Reference. Aaaannnnnyway, So I, The Caring Guy that I am, is going to try and Help both New Members and Refresh for The Standing PTLS Members. So, I’m going to take this in sort of a Political Candidate/Interview kind of Way. So, Here We Go.

First Off, I would to like Welcome You to The PTLS Family! My Name is Christian Smith-Centeno (also known as “Christian Centeno”) I am currently 29 Years Old and I have PTLS. I usually say that statement Very Proudly. Even though I edit it to My Age, Every Year, I still say it Proudly. I have had PTLS my Whole Life, Diagnosed at 3 Years Old. I was 4th In The World and 1st in The United States and through the week long research study (done Way Back then) but, that is just a Title! So, now that We have done the Introduction, Time to go for The Deep Stuff! By The Way, New Members, Please Take Your Time reading this, You don’t have to Digest It at all at Once! 

So, With New Members, They have Different Priorities when It comes to The First Question, We’ll call it, The Leap of Faith. Here We Go! 

Are You Okay?/Is My Child Going to be Okay?/ Are You at Least “Close to Typical”?: To Answer That Question. Yes, I am Okay. I am a Happy Person and Most PTLSers are Generally Happy. In Fact, They say that PTLSers have “The Happy Gene”. Second Question, This and VERY Important! Yes, Your Child Will Be Okay (Capitalized for Emphasis). Am I at least “Close to Typical”, As Good as I can be. Sometimes, It is not Easy to “Try to be Typical” because I don’t want to stand out TOO Much! I see Myself as “Unique”, In Other Words, I am Me, Simply Put.

What on Earth is PTLS?!

PTLS is shorthand of “Potocki-Lupski Syndrome”. Potocki-Lupski Syndrome is named after Two Doctors in Houston named Doctor Potocki and Doctor Lupski. and While we are at it, PTLS is NOT a Disease (It is a Disorder), It just happens. It is also worth Mentioning that Potocki-Lupski Syndrome has Autism-like Behaviors.

Oh My Lord, What do I do about Potty Training?! 

Okay, now This is My Bias Story, So it may or may not work for You. One Day, It was Raining and My Mom had a Frustrating Moment and Told Me that “The Baby down the Street needed My Diapers and I could not go in My Pants” Long Story, Short. I looked at Her like She had Two Heads and I eventually went to The Bathroom, by My Self. Needless to Say, Us PTLSers are Very Stubborn! 

Important Stuff

The Stuff I feel that You should know about us. That I consider to be Important. We are Detail Oriented (All about The Details!), Routine Oriented (as in Getting Up at Same Time and Going to Bed at The Same Time, Predictability in Life helps us focus!), We do get Overwhelmed with Too Much Noise or Activity. In Other Words, VERY Sensitive Hearing when We are Young, It does go down as We get Older. We are a bit OCD and Obsessive about Things. and, Most Importantly, We are Rule Followers, If You tell us a Rule that We will Follow It and Expect Others to Follow It. We (or at least, Myself) have an Issue with Gooey Textures or Things that Look like that. 

Eating

 That They will do at Their Own Time. I personally Ate nothing but Macaroni and Cheese, Yogurt, Apple Sauce, and Pasta most of My Childhood. PTLSers these Days, Love Fruit and Veggies. More so Fruit. So, The Next Part gets a bit split in The PTLS Family with Different View Points.

Walking and Talking (Plain and Simple) 

Usually, Anywhere around 3 Years Old, They start Walking (some earlier) and, around 4 to 5 Years Old is when PTLSers start trying to Talk (Some Earlier, Some Later, and Some Non-Verbal). It should have a Disclaimer here that, PTLSers have a range, so Those Stats are a Give or Take. But, One Thing that I want you to Know in This Segment is that PTLSers are Smarter than You realize. They soak in Everything and In Turn, They end up Mimicking What They are around. 

Schooling. Oh The Complication:

So, This is My View, so Do with It What You Will. Throughout School, My Mom made sure that I had a Good Mix of Special Ed and Regular Classrooms. The Special Ed was more for The Subjects that I needed extra help in, like Math, Writing (With an Aide), English (With An Aide), and finally Reading. Now I should mention that We are Very Literal. So, Spacial Learning is The Best Way to Go. Now, I did Regular Classrooms like Geography (With An Aide), Environmental Science (With An Aide), Aqua Science, and Art (Both Regular and Sculpture Art, without an Aide). I Will mention that Back in High School, I did a little “Job Crew” Class and I got to do something, I referred to as “Parking Lot Duty”. My Job was to Check the Big Staff Parking Lot (about 100 or so Cars) and Make Sure that Everyone was parked in the right place. I had to write The License Plate Number if They weren’t. I had 100% Compliance that Year. 

College

 So This One is a bit hard for Me. I really don’t like People who are Not Understanding asking Me if I go to College. Disclaimer Here, Your Child CAN go to College if They are Ready or Want to. Me, Personally, I did not go to College because My Math and Writing Levels were not at College Level. However, In A Way, I attempted a College Class. See, I tried to take one Online. I took a “Globalization Class” because after all, I am interested in how Geography, History, and Politics all mix together. As Crazy as it sounds, I used to think that History was boring, It had Nothing to do with Geography. Boy, Was I wrong! But, Anyway, in Said Class, I had Read from a Text Book (on The Computer), Checked out Websites They told me to Check Out, Watch The Video Lecture, and then A Knowledge Check Test. I tried One Week of It and It was a Bit Overwhelming in learning about Things that I probably should not. I did passed Two Knowledge Checks without Reading the Whole Chapter It told me to read. 

Dating. Oh Boy!

 Okay, Those of You who are wondering if I have Ever Dated, The Answer is Yes. I have had Two Girlfriends and I have been to a Homecoming Dance. By The Way, Homecoming in Texas is The Autumn Equivalent to Prom. Now, as For Future Dating, I plan on Finding The Woman of My Dreams, Bridgett (I am believing that is Her Name) and Dating Her, and Eventually, Marrying Her. 

Do I Plan on Getting Married?! 

Now, This is Not a Common Question of New PTLS Members, but I know it is One of Those Curious Questions that People are a bit afraid to ask. The Answer to This Question is Yes. Well, I think I pretty much answered that one at The End of The Last Question I answered, funny how that happens. Now, Although I do plan on Getting Married, I pray that it goes off really well. The Thought of It, I have to say, makes me Anxious. As For The Other Stuff, I do plan on that too and I hope that My Texture Issues will not flip on me. And, Final Question

 The Future

 Hard to Answer but, I know I plan on Getting Married, I plan on a Job that has Structure and Predictability in a Field that I Love, and Probably Most of All, I plan on Traveling The World to see It’s Great Beauty. All in all, With all The Questions I answered, I want you to know Most Importantly that with All The Craziness of Figuring Out PTLS along “The PTLS Highway” (Refer to “PTLS Highway” Newsletter), I Want You to know that Your Child WILL be Okay!

Thanks for Reading The Christianville Spirit. Give Us Opportunity and We will Meet Those Expectations

The Christianville Spirit: The History of PTLS Awareness Month-10th Year Edition

The Christianville Spirit

The Spirit that Makes You Wonder

March (Marzo) 1st, 2017-TCS # 535

Ola, My Readers. This is New Greeting taught to Me by a Young Adult PTLSer in Portugal. “Ola” is Hello in Portuguese. New Language, New Greeting! So, Happy March Everyone! This March is just like Any Other.... Kidding. Happy Potocki-Lupski Syndrome Awareness Month or PTLS Month! That is The Official Title, By The Way. Yes, It is a Rather Long Official Title but, We are Very Proud of it. Now, For the Past Two Years, I have repeated This Story but, This Year The Following Story is More Special because It was 10 Years Ago. Yes, Really, Folks! Ten Years Ago! Funny Thing, I was in High School in My Graduation Year of 2007 when Potocki-Lupski Syndrome was Officially named. That is an Eerie Thought, as I think about it. When I think of The Time between Now and When PTLS was Named, I am amazed at All The Progress that We have made. From The Naming, to The PTLS Foundation’s Founding, to Taking PTLS Worldwide to Stockholm, Sweden; London, United Kingdom; and, Madrid, Spain. and, We are not Stopping There! We have So much more Progress to be Made in PTLS and I for One, Am Extremely Proud of Not Only having PTLS, but of Everything that We (Not just Myself and My Mom), PTLS Family Members have Done in The Past 10 Years since The Naming of Potocki-Lupski Syndrome. Funny Thing, It actually was going to be named PLS, but The Name was already taken. So, For Those of You who have Heard This Story, Let’s Refresh! and, Those that are New, Rejoice with Us as We relive “The History of PTLS Awareness Month”! So, This Newsletter that I wrote about The History of PTLS Awareness Month was written back on March 5th of 2014, refer to Newsletter Number 392. Enjoy and Happy PTLS Month!

So, As You all know (or Should Know), March or “Marzo” as I like to call it, Is known as Potocki-Lupski Syndrome Awareness Month and March 8th is PTLS Awareness Day. So, What is PTLS? To give you a brief history of it, PTLS was named after Dr. Potocki and Dr. Lupski in Houston, TX. I was diagnosed with it when I was 3 Years Old and at that time, It was a called “A Duplication of Chromosome 17p11.2.” on March 8, 2007, Dr. Potocki and Dr. Lupski had it named after them. I only found out last year that exact date of it. You See, I can tell you that exact story of how I found out but, I didn’t know the exact date that it was Named. So, in honor of PTLS Month and PTLS Day, coming This Saturday, I’m going to tell you about How I found out the date, The Story of That Day, and Rewrite The Newsletter I had written that day which First Mentioned It. So, without further a due, This is The Story of PTLS Awareness Day. Happy PTLS Day to All! 

So, One Evening, I was curious and was wanting to know about when PTLS, The Name, was first mentioned, after digging through Years of My Printed Newsletter Records, I call them “My Records” for short. Thank You, Grandma Honey for Printing Them :) I read through them all the way back until March 8 of 2007. The First Time I mentioned it (and, I will show you, how I did) I had No Idea how to even spell “Potocki and Lupski”, it is a hard name to spell with such a Literal Mind that I have. As for the Day itself, I remember it quite clearly (although In My Head, At the time, I sort of over looked it). I was going to Senior High School (they have a different structure of Schooling her in Plano) It was My Final Year of High School. Because of a Screw up of My Class Schedule (They put “Job Site” near the end of The Day), So My Mom had to pick me up early because I didn’t have any classes, only the “Job Site”. Anyway, I remember us pulling out onto The Street and as We started driving up The Street, My Mom said, “Guess What?” I answered, “What?”, She followed, “Your Special Needs was Named!” she followed by telling me that Dr. Potocki & Dr. Lupski in Houston at Texas Children’s Hospital named My Special Needs, “Potocki-Lupski Syndrome” or PTLS. I thought, “Finally! I can easily explain about what I had to People!” because before it was just “A Duplication of Chromosome 17” which first of all, I had No Idea what it meant so, It was hard to explain to People and Second of All, Most People, except Medical Doctors, knew what a “Chromosome Duplication” was. So, To say that I am Thankful to Dr. Potocki and Dr. Lupski for naming it, is an Understatement. Thank You very much for all Your Hard Work, Dr. Potocki & Dr. Lupski! Now-a-days when I tell People about it, I tell them that it is Autism-like Behaviors and Very Unique. It also helps to just say it like My PTLS Sister, Danielle says it, “Just Look It Up.” Anyway, so Now I’m going to show exactly what I wrote on March 8, 2007 and I’m going to tell you it is very different from The Way I write now. To Give a You a Little Background, I was in the Middle of one of My First “Christianville Spirit Series” highlighting People that were Important to Me. 

In This Edition of The Series, happened to be about My Mom.

Newsletter for March 8, 2007: Entitled “Julie Smith-Centeno Edition”.  “CHRISTIANVILLE METRO HIGHLIGHT: Meet Julie Smith-Centeno{or Julie Centeno; whichever you call her}. Julie Smith-Centeno around my house and The City of Christianville is known as My Mom. My Mom is the sweetest and funniest person you’ll probably ever know. In fact, I’ve heard many stories that people are jealous that they don’t have a mom like my mom. My Mom is a Massage Therapist{and, they say she’s good one too} and she also teaches a Anatomy and Physiology Class; {ask her about that one} and yet she’s home enough to take care of 2 Teenage Kids, My brother Michael and myself. oh, and did i mention, she’s SINGLE MOM. yea. if Y’all were in her position i don’t know anyone would make it. but, there’s a chance but, i doubt it. but, as i was saying she’s pretty cool mom. i mean, every now and then i’ll ask her to take me on a drive somewhere because i love travel and stuff and she’ll do it. and, she enjoys it too. one time she even took me to Texarkana and back just so i could see the roads and stand on the Texas-Arkansas line. To the medical world of Houston, TX my mom might as well be known as one of The Capitols of My Special Needs. which actually has a name. It’s called Patocky-Lubsky Syndrome. What makes My Mom so funny{in case you were wondering} is that she comes up with funny sayings and jokes like everyday. so, that’s what my mom is like. the awesome mom she is.” So, as You can see There is a Lot of History behind PTLS Awareness Day! Now, that I think about it, as I was re-typing that newsletter, I’ve noticed that My Writing has changed a lot since that Time as well as The Letters that I typed were smaller than Today. All in all, This Year’s PTLS Awareness Day Motto is “Be Seen...Wear Green”, thanks to PTLS Family Member, Samantha Lamb.

Thanks for Reading The Christianville Spirit. Happy PTLS Awareness Day! Remember, Be Seen...Wear Green.