The Christianville Spirit: Best Of PTLS Awareness Month II

The Christianville Spirit

The Spirit that Gives Hope

March (Marzo) 4th, 2020-TCS # 678

Happy Potocki Lupski Syndrome Awareness Month, My Readers! Wow! That is a Mouthful! Yes, That is Right, it is PTLS Awareness Month. If You can believe it, A few years ago, There was No Such Thing as PTLS Awareness Month, The Saying, “Be Seen, Wear Green for The Happy PTLS Gene” (that is The Extension of the “Be Seen, Wear Green” saying), There was No Logo (The Key), and There was No Such Thing as Potocki-Lupski Syndrome. Before March 8th, 2007, Potocki-Lupski Syndrome was just known as “A Duplication of Chromosome 17p11.2”. Now, that is technically what Potocki-Lupski Syndrome is, A Duplication of Chromosome 17p11.2. But, Try explaining that to Someone when You want to tell them how Unique You are. It took many years to get where we are today. We are at 1 in 20 Thousand Kids Now. My Unique Syndrome was named for Two Very Down-to-Earth Doctors in Houston, Texas; Doctor Potocki and The World-Renowned Doctor Lupski (although He won’t admit it Outfrontly because He is a Humble Man). My Mom tried many years to get them to Name It. She, Of Course, had kinda settled on “Christian Syndrome” if They were not going to name it. Funny, My Syndrome, could have been named after Me! So, That is The Background of The Story of Potocki-Lupski Syndrome. So, Why I am I so Celebrative about PTLS Month? It is Just a Month after all, with St. Patrick’s Day and My Mom’s Birthday. But, To Most People, It is just a Month, but To Me, It is a Chance to Celebrate My Uniqueness and Celebrate The Fact that, Yes, I am That Unique. I still Remember, The First PTLS Awareness Day, before Anyone knew about it. It is at a Time when My School screwed up My Class Schedule, meaning that I had to go Home early. In Short, I chose The Wrong Class! Anyway, on March 8th, My Mom picked me up and we pulled out on the street, and start driving home when My Mom told me. “Guess What?!” Mom says. “What?” I respond with. “Your Special Needs was Named!”. Now, at the Time, I needed a Minute to absorb what She was saying, “My Special Needs was Named?!” then, She told me, “It was named after The Doctors in Houston, Doctor Potocki & Doctor Lupski”, She continued, “It is called Potocki-Lupski Syndrome or PTLS!”. I was so Thrilled! I finally could say, “I have Potocki-Lupski Syndrome!”. After about a Year of Figuring it all out and Enough PTLS Families (Today known as PTLS Family Members) were around, we started to tell them. 

The Best Part of PTLS Awareness Month, I feel is that It is a Time for Raising Awareness. We have a PTLS Foundation that working hard to help support us and It is Important to make everything Positive because We PTLSers see Life in a Positive Light.

In Order Words, Show that We PTLSers matter in The World! We are NOT Special, We are Unique! Guys, PTLS is a Big Gift from God to You. We want to be seen and be heard! Now, Yes, Your Child may be behind and Not Progressing the Way You want them to but, We need to Stay Focused on What all of us PTLSers CAN do, But, On Their Own Time! It is Important to Me, and I know All My PTLS Brothers and Sisters, that You believe in Us and All we can do. We are the ones that Have It and We want you to be Proud of Us. We need you to stay positive for us.  No, PTLS is not Bad. It never is Bad, We are Very Happy People. But, There are things like Anxiety, Irrational Fears, and Being Overwhelmed when We want to have Fun but, We need you to understand us so we have time to adjust. 

So, To be Clear, PTLS Awareness Day is March (Marzo) 8th and PTLS Awareness Month is The Entire Month of March (Marzo) so You can “Be Seen and Wear Green” at Anytime of The Month. So, At The Realization that I repeat The Story of How PTLS was Named (In My View). I have decided to give you a “Best of” Newsletter. A Newsletter with References to The Original Story of The Naming of PTLS Awareness Day/Month as well as a Rerun of What I feel is The Best Newsletter that I have written on or near PTLS Awareness Day. So, This is The List of What I am calling, My “Christian’s Best Of PTLS Day Newsletters”

PTLS Awareness Month Kickoff (2015)

Unseen Newsletter about PTLS (2015)

The History of PTLS Awareness Day (2014)

My Love For PTLS (2013)

So, Now that We have that. This Next Section is a Perfect Explanation of How I feel that PTLS Awareness Day is like.

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. (This is  The Best PTLS Day Newsletter) 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 30 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. The Spirit that Brings Awareness? That is The Christianville Spirit.