The Christianville Spirit: Translating PTLSers

The Christianville Spirit

The Spirit that Uplifts Your Soul

March(Marzo)26, 2014-TCS # 395

So, Everyone, This is The Last Newsletter of March (Marzo), PTLS Awareness Month. In Honor of PTLS Awareness Month, I’m going to help PTLS Family Members “Translate” Their Child’s Behavior. The Way I am going to “Translate” is that I am going to share My Experiences on some of The Things I did when I was Young. There was a time when I did something called Stimming. I stim in a different way now, by way of being on My Computer. But, The Stimming I did was called pacing. You See, One Day at Our House, I found a little section of Grass and Dirt under a Big Tree, I would make sure No One was around and then, I started walking back and forth. In My Mom’s Words, “I would hippity hop, back and forth.” Back then, I didn’t really know what it was called or what it looked like to others, I just knew that I liked the feeling of it. As Soon as I started going, I would start mimicking the Sounds of The Road in Dallas. To explain to those who live Elsewhere, To Me, it sounded like someone was hollering. When I was a Kid, I called it “The Holler Road.” I later found that it is grooves in the road that help with Tire Traction that made a High Pitch Noise. Anyway, I would hear the sound of The Holler Road and I would mimic it. Other Times, I had a Wild Imagination! In My Mind, Our House was sort of a Welcome Center, in the Events I pretended that We lived in Oklahoma and The Other Side of The Creek we lived on, was in Texas. Now, that I think about it, It probably was because Our Lake House was close to Oklahoma. Other Times, In My Mind, Our House would be a Welcome Center/Customs House on The Texas/Mexico Border. Our House was in Laredo, Texas; The Creek was The Rio Grade River, and Across The Creek was Nuevo Laredo, Mexico (This Thought came from My Dad taking me down to Laredo & Nuevo Laredo, because it sounded cool and I wanted to check out Mexico). You Know, When You are a Child with a Creek in Your Backyard, Anything is Possible! While I was pacing, I would look at the ground, even though The Ground was the Same going to Back and Forth but, I would picture these things I Mentioned in My Mind. Once I started pacing more, I actually could picture the ground showing me driving on “The Holler Road” or Picture People coming into Our “Welcome Center” and Signs that lead people through The House to Laredo, Texas or Marietta, Oklahoma. Usually, Someone would come out to see what I was doing and Redirecting Me by Jumping on The Trampoline with Me or Go Inside to Play Video Games. So, The Next Thing I want to “Translate” is an Obsession that I have noticed that A lot of PTLSers have when They are Young. It seems like we PTLSers are Obsessed at One Point about Doors. I’m not sure exactly why But, I can tell you that I, in fact, have gone through that Obsession. Now, Keep in Mind though, It may or may not be The Same as Your Child, but This is How I saw it. For Example, The Elementary School that We went to, was an Open Plan School, Where You would walk into the Center of The School and You entered into The Library. From There, There were two-paired wood doors that led to Each Grade. Two Glass and Wood Doors to Kindergarden, 1st, 2nd, 3rd, 4th, and 5th Grades. Well, I believe, back then I was in 3rd Grade, The 3rd Grade Doors had a unique sound to them that I liked. They made a “Doke-Doke-Doke” Noise. For Some Reason, I loved that, “Doke-Doke-Doke” Noise, so Any Chance that I got to Open the Door and Hear it make that Noise, I took it. I’m sure at One Point, it annoyed all the Students and I stopped doing it until The Next Time I had a Chance. I should mention that Our Old Elementary School doesn’t have that Open Floor plan like it did in The 90’s. The City of Plano redid it a Few Years Ago. Really, The Only thing that is Original, is The Gym. To be Honest, Although Off Topic, I kind of Miss the Old Days of Elementary School and All the Fun that We, The Barsi’s, and The Herricks had together. But, The Door Thing, I’m wondering that PTLS Kids like that same, “Doke-Doke-Doke” Noise, “Bang”, or “Squeak” Noise but only with different things like Cabinets or Other Doors. My Mom tells me that I used to sit on The Kitchen Floor and Open and Close Cabinets. I don’t do it anymore and I haven’t for a Very Long Time. All in all, Doors and Stimming are Fun to us Kid PTLSers but, It doesn’t last long because It would look silly.

Thanks for Reading The Christianville Spirit. There is a Reason why We do things, We enjoy it and It makes us feel good. Try It Sometime! 

The Christianville Spirit: The First TCS Newsletter

The Christianville Spirit

The Spirit that Uplifts Your Soul

March(Marzo)19, 2014-TCS # 394

So, A Couple Nights Ago, I had one of those “Humm...I Wonder” thoughts that seem to only occur at Night. I have found that Sometimes I have Genius Thoughts and Ideas about Different Things. Some of them are Personal and some are more Curiosities about My Newsletter and My Life. In This Case, I pondered a question about My Newsletters. Now, As You know, I have been Writing This Newsletter for 8 Years and That is a lot of Writing. Luckily though, My Grandma Honey (My Mom’s Mom) has been printing Every Newsletter I have written. So now I have Records all the way from My First Newsletter to One when I wrote about My Birthday, A Couple Years Ago. But, That brought me to wonder about My Trademark Ending, “Thanks for Reading The Christianville Spirit.” Considering that I put My Newsletter Records under My Desk on the Other Side of My Room, I get curious and pick up the binder of Records look through it. I look through it often to Answer Many Questions or Just for Fun. It is Fun though, to Read Through Them to see how much My Life has Changed, see How Much I have Changed, and To See where I was at a Particular Time, among Many others. So, A Curiosity I had was Did I always Finish My Newsletter with “Thanks for Reading The Christianville Spirit”? I found out that I actually Did Not always write, “Thanks for Reading The Christianville Spirit”. After All, As My Newsletter Veterans know, When I first started writing The Christianville Spirit, It was just an Emailed Newsletter before I decided to go more public with it. After That Decision, I started writing on a Site called Yahoo 360! It was sort of an Early Facebook-Like Social Media Site. Near when I Graduated from High School, I posted on a Write-to-Get-Paid Kind of Site and Finally, I settled on Blogger, which is Where I am Now. I thought that this is kind of Funny considering that I write This Newsletter weekly on Wednesdays. When I first started, I didn’t write on Wednesday, I would write any day, Sunday, Tuesday, Wednesday, Friday; It would be Very Scattered until I chose Wednesday because It was The Middle of The Week and I was busy on the Other Days. I found that I changed a lot in My Writing Styles. In Fact, I’m going to show you just How Much I have changed. The Newsletter that I am going to share was My Very First Newsletter. I wrote it on November 1, 2005 and It was more of a Notice, than an Actual Newsletter. But, It’s how I started. Now, One More Thing I should mention, At This Time of My Life (as I look back on it now, I laugh to Myself) I did not know that Writing in All Caps meant You were Yelling. Even though, I was not Yelling, It was the way I wrote. So, Without further a due, This is The First Edition of The Christianville Spirit.

“THE CHRISTIANVILLE SPIRIT

                          SERVING THE CHRISTIANVILLE METRO AREA

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

NOVEMBER 1, 2005

DOWNTOWN CHRISTIANVILLE--- ON THE 16 TO THE 20 OF NOVEMBER WILL BE THE 1ST CHRISTIAN’S BEST FRIENDS FESTIVAL. HOLIDAY-LIKE DAYS HONORING CHRISTIAN’S BEST FRIENDS. THAT DAY WILL HONOR ONE OF HIS BEST FRIENDS. FRIENDS BE WILL BE: STEVEN VANDENEYKEL, THE HERRICK GIRLS, AND KARLEEN FRISHMAN. STARTING OUT NOV. 16 WILL BE STEVEN DAY, NOV. 17-19 HONORING THE HERRICKS, AND FINALLY NOV. 20 WILL BE KARLEEN DAY. THIS WRITING OF THE CHRISTIANVILLE SPIRIT IS TO LET KARLEEN AND MOM KNO ABOUT THE HOLIDAY HONORING/FESTIVAL.

TO THOSE HONORED IN THE FESTIVAL:

THANKS A BUNCH FOR BEING MY BEST FRIENDS!!!!!!!!!

CHRISTIAN CENTENO”

So, As You can tell, My Writing has Changed a lot! My Newsletters actually used to be about Whatever was going on in My Life (It still is, in a way) I referred to it as “Personal News” and then, I decided to write about My View on Life and How I see things. Now that I have One Day a week to write this Newsletter, in all Honesty, I look forward to Wednesdays because to Me, it means “Newsletter Day” and I get to share with You all the Exciting (and, Sometimes, Not Exciting) things that happen in My Life or To let you know how I view things. It is an Honor to Write to You, My Readers, Each Week and I Love doing It. All in all, I’ve changed a lot in 8 Years and I am excited and curious to see what changes lie ahead as I continue writing The Christianville Spirit.

Thanks for Reading The Christianville Spirit. Whatever changes come your way, Make Sure They are Good Changes.

The Christianville Spirit: My PTLS Week

The Christianville Spirit

The Spirit that Uplifts Your Soul

March(Marzo)13, 2014-TCS # 393

So, My Readers, I hope You had a Great PTLS Week and PTLS Awareness Day. I did not realize just how busy I have been over The Past Week, I was so busy in fact, that I am writing My Newsletter on Thursday instead of Wednesday. So, I am sorry about that. Anyway, This Week has been quite a Busy but, also Fun Week and I can’t wait to Share It with You. So, Let’s start with The Curiosity of Everyone wondering Just What did I do on PTLS Awareness Day itself. Well, I had forgotten to really make Solid Plans on PTLS Day with the exception of a Special Dinner. So, I ended up sleeping in until The Afternoon but, I can tell you though, Some exciting parts of it. As My Mom and I scanned Facebook at all the different PTLS Family Members and Friends wearing Green (The Color of PTLS) flat out amazed me! I was amazed because My PTLS Family went above and beyond the call to “Be Seen and Wear Green”. PTLS Members from Literally All Over The World posted everything from Family Pictures to Selfies of People wearing Green as well as PTLS Shirts. Now, I did get to have My Own Celebration, I started celebrating by shouting, “HAPPY PTLS DAY!” in My House at Midnight. In The Evening, My Mom and I went to dinner with My Uncle Craig, Yes folks, It’s another addition of “The Craig Chronicles”. Uncle Craig actually had My Mom go and meet him for a drink the night before to Talk to Someone about PTLS. A Few “Awesome Points” to Uncle Craig! As to How on Earth that PTLS would come up in a conversation with a Random Person is Beyond Me. Actually, We went to a Really Good Pizza Place here in Plano and We had (if You can believe it), Brisket Pizza. It was Really Good! So, on Sunday, the Family of My PTLS “Brother”, Tyler, came to town to visit. So, We had Dinner with them on Monday Evening as a sort of Post-PTLS Day Celebration. We were a bit confused though about The Time that We were going to Have Dinner. The Exciting Part about their visit that was The Most Fun was on Tuesday. On Tuesday, I got up early (Shocker! lol) and had My Brother take me to The House that Tyler and Family was staying at and We got to Hang Out at Their House for a while. It was a Nice Day and It was 80 Degrees, So I wanted to Go Outside in The Sun and Tyler wanted to go Bowling, so We did both. So, We Visited this Really Cool Park in McKinney called Town Lake Park, which is a cool park because It was a Big Lake and Lots of Ducks. I didn’t know, however, that You could hop into a Paddle Boat and Paddle across The Lake. I saw Swan-like Paddle Boats but, There were 4 of Us, so We asked if They had a 4 Seater and They did. So, Myself, PTLS “Brother” Tyler, PTLS “Aunt” Angie, and Angie’s Niece all hopped into The Boat. The Niece (Lauren) and Angie up front, Me and Tyler with the controls in The Back. I will tell you that The Controls for The Paddle Boat were a bit confusing, because They were reverse but, I “Captain Christian” as “Aunt” Angie referred to Me as, did really well. Tyler, in case You were wondering, was “First Mate Tyler.” After we got done with The Park, we went bowling after that, We split into two teams, Angie & Lauren and Me & Tyler. I won the game out of all of them. I learned quite a few things about them, as well as Myself. We had a Really Good Dinner. On Wednesday, Newsletter Day, Tyler got to stay in town An Extra Day and We got to hang out at their house. I had a Really Awesome Time with Them and I thank them a lot for allowing me to hang out with Tyler and Allowing Me into Their Family. All in all, It was a Great PTLS Week and I hope to continue the “Be Seen, Wear Green” Tradition as well as Spreading More Awareness about PTLS.

Thanks for Reading The Christianville Spirit. You are Unique in Your Own Way.

  

The Christianville Spirit: The History of PTLS Awareness Day

The Christianville Spirit

The Spirit that Uplifts Your Soul

March (Marzo) 5, 2014-TCS # 392

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.