The Christianville Spirit: A Family Letter-A Christianville Classic

The Christianville Spirit

The Spirit that Keeps Learning with Hope and Resilience

September 26th, 2018-TCS # 608

So, Happy Fall Everyone! Some People like to call it “Fall” and in Old English, They call it “Autumn.” I like both, The Name Autumn sounds more appealing this year. So, Happy Fall and Autumn! So, onto This Week’s Newsletter! So, I came to a Realization this Week. So, My Mom posted on Facebook the other day, Thanking The People involved with having us Speak in Sweden two times. You See, as of This Week, It has been Two Years since The First Time that We went to speak in Sweden. But, One Comment really made me think. It was from a PTLS Family Member that I know very well and She said that When Her Child was Diagnosed, The First Thing She did was find My Newsletter and that is how She got to know, not only me but, More Importantly, Potocki-Lupski Syndrome (PTLS). I thought to Myself, not that I know what it is like to be a New PTLS Family Member, but What is The First Thing that They want to know? About PTLS, Right?! Well, Yes and No. They want to know about PTLS but, Most Importantly, They want to know if Their Child is going to Okay or not. In Most Medical Situations, from Syndromes to Illnesses and Ailments, They want to know “How Bad is It?” PTLS is NOT Bad for the Record, nor is it as Bad as You think it is. I looked over at My Christianville Classics List (By The Way, New Family or Not, You can always check that List) and I was Shocked to find out that A Newsletter that I had written explaining Who I was and What PTLS was was Not a Classic! So, with that Said, I am going to make it one. 

So, Without further a due This is Christianville Classic, “A Family Letter”. This Newsletter was a Part of My “Letters to Loved Ones” Series. 

This Newsletter was written on September 25th of 2013 (Refer to Newsletter 369)

So, Let’s Start This Week’s Continuation of My Series, with yet another question. When was the Last Time that You wrote a Letter to a Family Member? By That, I mean, A Family Member can be Your Uncle, Your Cousin, Your Grandma, or even Your Aunt. It can be someone in your Immediate Family, or someone in your Extended Family. It is, believe it or not, Rare to write a letter to a Family Member unless They are Serving Overseas. Thank You for Your Service, By The Way! The Most Common Written Letter is a “Love Letter” but, a Family Letter? Well, Most People will tell you while leaning back, “Ehh, We have Email for That!” True. But, Again it is Rare and Getting Rarer. So, In My Case, Because I have 3 Families (Immediate, Smith, and PTLS Family, respectively) I’m going to write to My PTLS Family. So, without further a due, This is The Christianville Spirit Series, “Letters to Loved Ones!”. For the 2nd Installment of the “Letters to Loved Ones” Series, I’m going to write one to My dearest PTLS Family.

“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 26 Years Old (I am now 31 Years Old) and Yes, I have PTLS. I am actually 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. Remember the Importance of Family!

The Christianville Spirit: Born This Way Wedding

The Christianville Spirit

The Spirit that Keeps Learning with Hope and Resilience

September 19th, 2018-TCS # 607

Howdy Y’all, My Readers! That is how We say hello in Texas! Happy Birthday and Shout Out to My Lil’ PTLS Sis’, McKenna! She is 16 Years Old Today! Happy Birthday McKenna! Now, On to This Week’s Newsletter. You Know, There are Sometimes when You watch a TV Show and You think, “Yeah Right, How does XYZ Show relate to Me? Does it Teach? Does it make You Feel?”. Most of The Time, TV Shows don’t relate to You. More Often, You relate to Them. But, What about a Show that does both? It relates to You and You relate to It. Well, There are a Few Shows that I have related to, like The Good Doctor. By The Way, The Good Doctor will be on This Monday here in The United States for a Second Season. A bit of Advice, Watch the Whole First Season first before going into The Second. I Digress. Anyway, There is Another Show that I have been watching called Born This Way, It basically shows The Lives of Several Young Adults with Down Syndrome living their Lives and Going to a Special Needs Community Center to meet and Hang out in Los Angeles. Anyway, Born This Way is a Series on A&E that explains What it is like to Live with Down Syndrome, from The Point of View of The Person themselves as well as Their Parents. Topics in The Show cover Their View on Many Things including Life, Jobs, Independence, Love, The Want of Children, Marriage, and Of Course, Sex. Sometimes, The Down Syndrome-ers have trouble talking about Sex, so They refer to it as “The S-Word”. Now, It is Previous Episode of This Show that really touched me and Made me Think about My Life. It seems like Every Time that My Mom and I watch that show, It always prompts up Discussions about My own Point of View. In This Case, It was Deep. You See, One of The “Down Syndrome-ers” named Christina was like a Typical Special Needs Woman who wants Love, Marriage, and Children. And, She eventually went on a Date with Someone who had a Different Special Needs named Angel. Christina and Angel’s Relationship developed over The Course of The Show. They went on a Date; They became Boyfriend and Girlfriend; eventually Angel proposed, Leading us to The Previous Episode, The Wedding! Yes, Christina and Angel got Married! Now, I personally thought that It would be a Special Needsy kind of Wedding, Everything Adapted. Nope! It was Far from It! It was a Huge Wedding! It looked to be Expensive and It was! They had Beautiful Vows, They personalized them, and Of Course, They had their First Dance to a Very Romantic Country Song. I actually remember it, It was “I Cross My Heart” by George Strait. I am poking at Myself a little and My Friend, Deb will know Why! Anyway, It really made me think about My Future Wedding, now that I have what it is like for Two People with Special Needs getting Married. 

With My Anxiety and Being Overwhelmed easily, How would I handle My Own Wedding. It is different when It is  Someone Else’s Wedding where if The Music is too Loud or It is too Overwhelming, You can go somewhere, Where it is Quieter. Just a Fair Warning; Being Real with You here, At The Time of Writing This, My Thoughts were Very Scattered because This is a Very Difficult Topic for Me to write about. Trying to combine My Future Dreams and Reality!

Now, I have been to My Share of Weddings, Good Friends, Family Friends, and Yes, I was part of The Wedding Team in My Uncle’s Wedding. So, I know what it is like. The Largest Wedding I remember was both My Uncle’s Wedding and My Cousin Charlotte’s Wedding. They were Big Weddings with at least 50 to 70 People or Higher. Of Course, The Opposite, A Smaller Wedding was My Former Neighbour’s, Rob and Caree’s Wedding where The Ceremony was at a Church and The Reception was at Their Parent’s House. After Experiencing Big and Small Weddings, I think I would prefer a Smaller Wedding.

Just Thinking about All The Traditions and Rituals of a Wedding Ceremony, The Reception, and Even Pre-Wedding Events makes me Anxious just thinking about.

I have done a lot of Thinking and Preparation about This. I even came up with a YouTube Playlist of Songs to Play at My Wedding. 

I am not sure how The Wedding Ring would feel on My Finger and Whether I would like it or not.

I am not sure how How Anxiety I will be. Either Calm and Natural or So Nervous and Sick to My Stomach. 

Don’t Worry for Those Attend because The Music will not be too Loud, It will be Easy to dance to. 

I figured that if Two Special Need People can have a Pretty-Close-to Typical Wedding, than Maybe I can. Mine will be a little Easier. 

As Seen on The Show, Christina had a few times when She panicked and She was not sure if She wanted to get Married. That is My Worry as well, where I have an Anxiety Attack not being sure about What I am doing. Because of The Money spend, People coming, and My Future Wife waiting for Me. 

All in all, as Long as I am Calm and Natural because I am Marrying The Woman of My Dreams. Because I am told that It will feel Right when I marry Her. My Mom on the other hand, will be Crying her Eyes out!

Thanks for Reading The Christianville Spirit. Love should be given to those who are Typical and Those with Special Needs!

The Christianville Spirit: ANTs in My Head Rerun

The Christianville Spirit

The Spirit that Keeps Learning with Hope and Resilience

September 12th, 2018-TCS # 606

Be Careful Out There, My Readers! Okay, This is a More Serious Greeting! As I am writing this, A Big Hurricane is on It’s Way to The US State of North Carolina and South Carolina. I live in Plano, Texas (North of Dallas), so We are Fine. But, I have Family Friends and PTLS Family Members, “The Famous Deb” included, that are in The Way of This Hurricane. If You are Reading This, Please be Careful and Get out of Harm’s Way! Anyway, onto This Week’s Newsletter. So, Recently I have had More Anxiety than I usually do. My Mom gave me some tips on How to help it, Some Exercises to do, and I got serious with My CBD Gummies. Anxiety is something that is common with Us PTLSers in Many Different Way including What I am going to talk about in a Newsletter that I going to rerun. Enjoy and I hope You learn something.

This Newsletter was written on September 28th of 2016 (Refer to Newsletter 513)

Happy Autumn, My Readers! Sorry Guys, I forgot to wish you a Happy Autumn last week. So, Happy Autumn anyway. I like that word, Autumn, it actually sounds better than Fall. Anyway, on to This Week’s Newsletter. So, when I scroll through My Facebook News Feed, Interesting Stories pop up (I call them “Push Backs” because I send them to Safari and I read them after I get done with Facebook) that I find to Read. Most are about Travel or Romance. But, This One got to Me. It was an Article from a Special Needs Advocate Blog called “The Mighty”. This Article was about What It is like with High-Functioning Anxiety. That basically means that I can do a lot by Myself but, We have Anxieties to go with it. I am thinking that Anxiety is a common trait of People with Special Needs and that includes PTLS. Don’t get me Wrong, I Love PTLS, I Love having PTLS, I would never trade it for The World. Do I wish that There were Certain Attachments (or Clauses) that I would edit or get rid of? Sure I would. The Biggest Attachment I would want to get rid of, is You guessed it, Anxiety. Anyway, This Blog post on “The Mighty” explained in My Head, Perfectly what it is like with Anxiety being a High-Functioning Person with Special Needs. It mentioned also to Blog about It to Help You, as well as Others Understand, and That is what I am doing. So, When I am Anxious, according to My Mom, You can usually tell. If I am Anxious about a Certain Event, I get different ranges of symptoms, like a little Gagging (when I was little or in extreme situations), Throwing Up (in real extreme situations), Sweating, or Digestive Issues. Usually, My Mom can tell I am Anxious because I have a “Look” on My Face that says it all. We call it the “Something is bothering me/Face of Fear/I’m going to be Sick” Face. But, What about Anxiety Stress, I believe that The Article was referring to? Well, when I am stressed I tend to act different than What I normally do. I am more Quiet when I am normally Talkative, I ask a lot of questions, I get Headaches more often, Most of This Stuff I have written about before, and then Something that I have never mentioned is Something I like to called “My Curiosity thoughts”. Basically, They are, as My Mom says, “Intrusive Thoughts” that Everyone has normally, that usually goes in and then Pass Through, like how new parents worry about dropping a baby while they are holding them. They know they will not do it, but the thought “Pops” in their head. But, For Me, It “Pops in” and then I obsess about it, and Then I have to let it Out somehow. It really bothers me when these Thoughts Pop in. I know they will not happen, but They sure are Bothersome. The Best Way I have found to let them out is either Blurting it Quickly, Say “Sorry Mom” (even though my mom did not even hear what I said), Hug, and Move on or I say it in a Joke form. Other Times, I would tell it to “Shut Up” and hope it goes away, and Get it to Pass Through. It can range anywhere from “Should I say or do this?”, and Not-So-Nice Words. Now, I would never actually do or say any of those things because I have No Mean Bone in My Body and I hate when They come in. It really Annoys Me when I have a “Curiosity Thought”! I have realized that When I am Anxious about Something that is going to happen that I am Not sure about, They start to show up more than I would like them to. I am wondering also if I am Imitating things that I see or hear about. Considering that I watch The News everyday to hear about What is going on in The World, which I use to Teach me things about How The World works, it is not good. I am struggling to even write this because It is hard to explain What is in My Head. My Mom looked it up one time about The Thoughts and Told me that It is common for those that have Autism to have those “Curiosity Thoughts”, but I read that Those with Autism tend to follow through with The Thoughts, where I would not. It makes me wonder though, It is a Little-Known but, Common Theory for those PTLS as well. The Article mentioned that You tend to have Self-Damning (If You will) Thoughts like Your not good enough, Your a Bad Friend, Your a Loser, Your Pathetic and It is basically Energy that needs to get out somehow. They say to Exercise, Walk, Run, or Just talk it out. But, Not to go all Psychology on You, but, Those Kinds of Thoughts are Common for Everyone. It is how “The Enemy” (as I explained in a Previous Newsletter) tries to Get you, to Upset You, and Pull You away from Your Destiny, that is his (It sounds better) job. I am thinking “It” should get a New Job. I often worry that I will have those Thoughts even in My Future, with My Future Wife around. I am sure that She will change that, at least I would think. I will always have some kind of Anxiety but, I would rather get rid of that one. All in all, I hope that You understand that It is Hard to get what is in My Head out for You can Understand.

Thanks for Reading The Christianville Spirit. We all have ANTs (Automatic Negative Thoughts) in Our Head, Get a Hug and Let them go.

The Christianville Spirit: The World of Music Rerun

The Christianville Spirit

The Spirit that Keeps Learning with Hope and Resilience

September 5th, 2018-TCS # 605

Ahoj, My Readers! Yes, This Greeting sounds like a Pirate, that is actually how They say Hello in The Czech Republic as well as Slovakia. To be Fair, Slovak and Czech are Very Close Languages. For Two Separate but, Divorced Countries, not only does Czech Republic (Czechia) and Slovakia, formerly Czechoslovakia speak Languages that are close to one Another and They are still Very Good Friends. Anyway, Speaking of Languages and The World, I payed another visit to An Interest that I have not done in a While. Remember when I found that Site of Radio Stations around The World? If You don’t, I am going to Rerun The Newsletter that explains it. In Case, You are wondering It is called “Radio Garden”, This Time, using The Site I like to travel on The Internet. So, In My Cyber Radio Travels. I started here in Dallas, Hit Atlanta for a Quickie, and then, headed to Stockholm, Sweden and Iceland, to Hear a Radio Station that I heard on The Way with Josefine and Husband, Mattias to and from Sundsvall called RIX-FM. Apparently, It is a Radio Station that Works All Across Sweden. My Understanding is that it is equivalent to Sirius/XM Radio here in The United States. It showed up on The Listing, but It needed a Login. I did try another Swedish Station where I heard a “Sverige Taxi” Commercial. I will say, It was quite Whimsical for a Taxi Commercial! Then I wondered What do People in Iceland listen to. So, I went up to Iceland! There are a Surprising Amount of Songs that are in English, American or British. I did find One Station that played a Song in Icelandic. Perhaps, I was looking there at The Wrong Time because It was 3 AM, Iceland Time. After That, I headed to Houston and then, I was Done. Anyway, so The Newsletter that explains This Site will amaze you! I wrote This Newsletter Two Years ago. Enjoy and Happy Radioing!

This Newsletter was written on February 22nd of 2017 (Refer to Newsletter 534)

Bonjour, My Readers! That is One of My Favorite Greetings! In Case, You did not know, It is French for Hello. So, Boy, Do I have an Interesting Story for You! So, Imagine this with Me, Okay Folks? Imagine that You wanted to listen to The Radio but, in a more Expanded Way. You wanted to listen to More than just Radio in The United States. Until The Other Day, I had never done that before, listening to a Radio Station outside of The United States. So, Here is how it happened. I was reading My Facebook Feed over and over and, I saw a Link to an Article on a Site called “Geoawesomeness”. It is basically a Site of Maps and Charts, for those like me that are Very Geography/History/Politics-mixed together minded. So, After reading The First Article, I wanted to see more Articles with Maps and Charts explaining This or That. Then, I found one that Literally Blew My Mind! A Site called Radio Garden and It is in Google Earth format with Green Dots all Over The World. Well, Those “Green Dots” were Live Streams of Radio Stations literally All over The World! Now, The only time I used to do it, If I wanted to, was think of An Area, Find a Station there, and Listen, or Use Apple’s LONG list of what They call “World Music”. After all, It is said that Music connects us all, right? If There is a Language that Everyone speaks It is in Music. hmm, Sounds like That could be One of Popi’s (My Grandpa on My Mom’s Side) Pearls of Wisdom. “The World is connected with Music”, I am pretty sure that He would say that. He did have a Degree in Music after all. Anyway, so I tested this “Radio Garden” Site and Once it started working, I was off and running like a Dog with The Gate left open! So, I started out small, My Local Area of Dallas-Fort Worth, then Atlanta at The Peak of Rush Hour, Washington DC, New York, and Cities in between, then I was ready to Hear The Music of The World. Now, Let’s bear in Mind that When Listening to The Radio anywhere You are, The Word “Music” can mean anything. Now, I know that “Talk Radio” is not always Music, but in The Radio World, Anything does at This Point. So, I went to Many Places around The World, Listened to The Language of The Country, The Tone of Voice, What it might be that They were saying, and The Type of Music that was being played. I went as far as Thailand; to India; to The Middle East; All over Europe (London, Paris, Madrid, Prague, Stockholm, and Oslo; among Many Others); The Caribbean (Puerto Rico, The Dominican Republic, and Jamaica); I took a Short Visit to Costa Rica, and Yes, They even have A Radio Station in of All places; Nuuk, Greenland! It was Interesting to say the least! So, a Few Questions that I’m sure that You are Asking, Why would You do that? What did You find The Most Interesting? What was The Most Unique Experience? and, Finally, Any Favourite Radio Stations that You found? Okay, Here are Your Questions answered!

Why would You do that?: Because I was Curious and Wanted to know what Music around The World sounded like

What did You find The Most Interesting?: Actually, Lots of Things. I noticed that There is a Surprisingly Amount of “American Music” Stations, or at least Stations that played Songs that are Hits in The United States. I even found a Country Music Station in Stockholm, Sweden. Yes, Really. Country Music, like a American Country Music, in Sweden. Yes, I know The Swedes can rock to Country Music as Much as Americans can, I just found it Funny. Other Funny or Interesting Moments, were Thai Rap in Bangkok, Thailand; Trying out Indian Music in Mumbai, India; and, Listening to a Station in Puerto Rico talk about US President, Donald Trump in Spanish. It took the Words El Presidente  and Estados Unidos to Convince Me that They were talking about The President. They did get rather Passionate as The Talk rolled on. 

Most Unique Experience: It was Interesting to Listen to What People in India refer to as “Traditional Indian Music”. I will tell you though, It is rather catchy and You can dance to It if You want to, In fact They encourage it! And, Can’t forget when I went into The Middle East, There are Some Stations that have Arabic Music and Some that are in The Best and Most Respectful Way of Explaining It, It is like Islam’s Equivalent of Christian Talk Radio. 

Any Favorite Radio Stations that I found: Well, I found Two Stations that I liked. Now, One is a American/British Music Station, “Dubai 92” out of Dubai, United Arab Emirates and The Other is an American/British (International is what They called it) and Spanish Music Station, “Cadena 100” out of Madrid, Spain. I actually listened to a Good Spanish Song that I wish I had looked up The Title and Blondie played after that and That is when It got My Attention. Yes, Spanish PTLS Family Members, I did listen to a Spanish Song (Español Musica) and You would be Very Proud! 

Anyway, all in all, It really was a Round-The-World Experience to hear The Music (and, Talk) of Different Parts of The World. So, My Advice, Check out that Site and spin The Globe and Listen to The World.

Thanks for Reading The Christianville Spirit. Open Your Mind to Different Types of Music.