The Christianville Spirit
The Spirit that Creates New Beginnings
March (Marzo) 1st, 2023 – TCS # 803
Happy Potocki-Lupski Syndrome Awareness Month, My Readers! I know, I can’t believe it either! I write that Every Year and It is quite a Mouthful to say but, Happy Potocki-Lupski Syndrome Awareness Month; Happy PTLS Awareness Month, or Put simply Happy PTLS Month! 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.
This Year, believe it or not, It has been 16 Years since Potocki-Lupski Syndrome (or PTLS for Short) has been Named! I still find that Hard to believe!
You Know, if This Huge Family of PTLS Family Members were a Country, in which In My Mind I believe It is Family Nations (I prefer The Term, “Family Countries”) put into a Union of Family Countries that I refer to as “The PTLS Union”; Then, PTLS Awareness Day would be like Our National Holiday that We celebrate with Anyone. We celebrate with All PTLS Family Members and Their Relations, PTLS Members’ Friends, Our Own Friends and, Family and Spreading Awareness to Anyone who wants to Listen. So, As Any Nation (or Union) does Every Year, We welcome in New Citizens as well as Do, Sort of an Introductory Crash-Run Course about What in The World is Potocki-Lupski Syndrome, for Those who might not know about PTLS or are Just Now joining Our Awesome PTLS Union of PTLS Family Countries! Join Me in Welcoming Them into Our Great PTLS Nation!
First Off, Welcome to Our Great PTLS Family Nation, My Name is Christian, Your PTLS Ambassador. More about Me in a bit... So, Starting Off! Off to The Races We Go! Hold on Tight!
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 8th, 2007, Dr. Potocki and Dr. Lupski had it named after them.
For This Week’s Newsletter, I am going to Give You a Double Feature! Before I do, I am going to explain something.
Imagine for Me, that You are a Playing the Role of a New PTLS Family Member. Now, Said New PTLS Family Member literally JUST Found out that Their Child has some Strange Duplication-Disorder-Special Needs, Whatever Term They heard from the “Wah-Wah-Wah" Sounds from The Doctor explaining What Their Child has. It is Very Scary, Very Emotional in both Good and Bad Ways. Good because You got an Answer and Not Good about You have No Idea what Potocki-Lupski Syndrome (or PTLS) is. For a Typical Person, This amount of Stress, is said to compared to One of Three Things, Getting Married, Buying a House, and Moving. In This Case, Imagine with Me, that You just got Married like 6 Months ago and now, You are Moving to Another Country and Getting a House there. You can Rent or Buy in This Case. Actually, You can Rent and then, Find a Place You really like! I digress. You don’t The Language, The Culture, or Your Way around. You are Pretty Much Lost and Stressed!
Now, How do You feel?
Well, This is How a PTLS Family Member feels after The Moment of Finding Out. After The Tears, The Whys/Hows, and General Boo-Hooing. What now?! Two Options. Research Stuff on Your Own (or Together) or Starting Asking Questions, in a New Country Situation, We could call that asking for Directions. Maybe the Person that You ask will Speak English and Be Nice enough to walk you to Where You need to go, to Make Sure that You don’t get lost again. Think of Myself as that Person. I’ll tell you there, Maybe ask You what You want to know first like, How to get from One End of Town to The Another. Or Getting to Simple Places.
So, Think of My Double Feature as a Tool Kit to Welcome You to This New Country! Pretty Soon, You will know Our Language, Culture, and More.. Welcome to The PTLS Family County Union!
Oh! And, Happy PTLS Awareness Day, Our International Holiday!
First Feature with Edits!
Portions of This Newsletter was originally written in May of 2015 (Refer to Newsletter 450) FAQ
So, I’m going to take this in sort of an 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 35 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!
Second Feature with Some Edits!
Portions of This Newsletter was written on September 25th of 2013 (Refer to Newsletter 369) Letter
“Dear PTLS Family Members,
Hi! For Those who don’t know me, My Name is Christian Centeno, I am the son of My Mom, Julie Smith-Centeno. although I liked to be referred to as “Christian Smith-Centeno” but, I answer to both. I am now 35 Years Old and Yes, I have PTLS. I am proud to say that I have PTLS (or Potocki-Lupski Syndrome). Also, known as Duplication 17p11.2 and Yes, all that Medical Lingo Matters! I have had PTLS My Whole Life, although I didn’t really know until I was about 9 Years Old but, it didn’t really matter much to Me. It doesn’t matter to Me now. For Those that are wondering, “Why am so I Proud to have PTLS?” Because it makes me Unique. Not in a “I’m-Better-than-You” kind of Way but, in a more “I’m One of God’s Many Unique Creatures in This World.” So, People will always ask me, “How do You handle having this ‘disease’?” First of all, It is NOT a “Disease”! It is a Unique Chromosome Disorder, and, How do I deal with it? I have lived with PTLS, My Whole Life so, It became part of My Life. Anyway, The One Thing I wanted to tell you, besides Giving You an Education about It, is that Everything is Going to be Okay! Life through My Eyes, it is pretty Awesome! Excuse Me if I sound like My Mother for a minute, but Your Child is going to Talk either words or through their eyes; Your Child hears and understands Everything and I mean, Everything, Believe Me, I drive My Mom crazy when I hear her talking on the other side of The House and I have always understood what was being told to me; Your Child might want to have a Girlfriend (like I did) or Boyfriend; Depending on the Child’s choice, They could go to Homecoming or Prom (I went to Homecoming, but I didn’t go to Prom); and, Finally, as scary as it sounds, Will find someone and Will get Married (As I plan on doing). A little note about PTLSers having Children, There is a 50/50 Chance of their child having PTLS. As for Me, I don’t plan on having Children for that Reason, Crying or Children/Animals in Distress really bothers me, as well it would be Hard for me to take care of. So, Will they get to Go to College, Get a Job or Drive? Well, College will be up to the Child’s Discretion and Abilities. As for Me, maybe I’ll take a few Continuing Education Classes but, College isn’t high on My List. A Job is a Definite Yes! I have, had one before and I was really good at it. and, Driving...Well, I’ll put it this way, If we lived in a Small Town where Everyone knew who I was, then maybe I would Drive but, considering I live in a Big City, it might be Hard. Of Course, That is not to say that I never Drove before. Because My Brother had me drive around the Neighborhood and When I was younger, We had a Go Cart and I drove that a lot around the yard. So, Your Child will get there eventually, it just takes a lot of patience. So, If you are reading this and you have been here a while, You pretty much know all this. For Those that are New, Welcome to The Family! Remember though, that No Family is Perfect and Remember too, that Family should always come First! I believe that we are literally, a Family, we may not be Blood, but We Are Family!
I Love You All, PTLS Family!
Your PTLSer,
Christian Smith-Centeno”
So, as You can see, whether You are New or a Veteran, We welcome you with Open Arms, a Hug, and Lots of Encouragement. All in All, Family may be what you make of it but, Family is Important!
Thanks for Reading The Christianville Spirit. Welcome to The PTLS Family! Embrace PTLS!
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