The Christianville Spirit: Honoring My Brother's Birthday

The Christianville Spirit

The Spirit that Keeps Learning with Hope and Resilience

October 24th, 2018-TCS # 612

Hola, My Readers and A Happy early Birthday to My Brother, Michael! In Case, You did not know, This Week is My Brother, Michael’s Birthday and It is a Big One! I was in Spain this past weekend for a PTLS Business Trip and PTLS Mini-Conference. Now that I am Home, My Mom is going to spend some Special Time with My Brother for His Big Birthday. You See, My Brother, Michael is turning The Big Age of 30! Yes, really My Readers! Thirty Years Old! So, I figured that I would honour him by Re-sharing One of My Favourite Newsletters that I wrote about Him on His Birthday. Now, Although This Newsletter was Written on October 26th of 2016 (Refer to Newsletter 517 or “Christianville Classics List”), It is not Old Enough to be Considered a “Classic” but, I feel it explains The Love I have for My Brother in The Best Way Possible. So, Without Further a due, This is the Christianville Classic, “Ode to Michael, If It weren’t for You (You don’t even knoooow!)” Enjoy and Happy Early-Birthday, Michael! Your Awesome!

This Newsletter was written on October 26th of 2016

Greetings, My Readers! Today is a Special Day in My Family! I like to think of it as The Only Reason that I celebrate The Month of October (besides Autumn Foliage) because after all, I Hate Halloween. That Reason of course, is My Brother, Michael. You See, Today is actually Michael’s Birthday and He turning 28 Years Old. Yes, I can’t believe it either. So, Let’s Sing to My Brother!

Haaapppy Birthday to You, You smell like a Poo (Just Kidding!); I Love You, My Little Brother, and You smell like One too! Now, Isn’t that Nice?! Anyway, I’m not sure that I have actually written a Newsletter on My Brother’s Birthday or not, I have always written one near It (Either Before or After) but, Never on It. So, Why Not, Write a Newsletter about My Brother, Michael. Now, I have done Odes to My Mom, PTLS Family Members, and Myself, but Not My Brother. So, I am going to do a Ode to My Brother, Michael entitled Michael, If It weren’t for You (You don’t even Knooow!). By The Way, “You Don’t Even Knoow!” is one of My Brother’s Trademark Sayings! So, Without Further adue, Here it goes!

Michael, If It weren’t for You (You don’t even Knooow!)

• I would not have a Little Brother
• I would be an Only Child. Which Frankly, would be Very Lonely and Totally NOT helpful with My Development of PTLS
• I would not have had You to Push me to do Things in a Helpful Way
• I would have not had help to Get up onto The Jungle Gym that I wanted to go up on as a Child, but It was too High for Me to Reach. So, You helped push Me up to go up there. I probably would say, just Given Up
• No One to Talk about Guy Things and Help with Girlfriends
• No One Helping and Supporting Me as much as You could when We went to Our Dad’s House.
• No One to say “C’Mon Christian” to get me to do things because I was stubborn to do things sometimes
• No One to come with the Term “Butt Buster” on The Trampoline when We were Kids
• No One to see How High I could jump when We were Kids.
• No One to call me “Chris-Pee-In” when We were Kids because It hard to say My Name as a Child.
• No One to Teach Me about Art. And, Not The Art that School teaches you, The “Funky Art” (as I like to call it) that You taught me
• To Show me that “Art is subject to One’s Own Interpretation”. the Most Crucial Thing about Art because There may be Art that offends People or that People don’t understand.
• No One to Introduce Me to Your Friends in High School or Senior High School.
• No One to Show me Typical Behaviors with Friends and Acceptance from Your Friends as well
• No One in Our Family that has such Long Hair
• No Little Brother to be Proud of His Big Brother’s PTLS
• No Little Brother to take The Big Brother Role. Even We though switch those Roles every Now and Then.
• No Little Brother to also to be Proud of
• No One whose Name I mix up for Time to Time, It is Michael, Not Micheal. 
• No One to teach you that It really does matter, The Girlfriend that You choose. I guess that Goes for The Both of Us.
• No One to hang out with Us on Family Breakfast Sundays
• No One to Show My Mom and I how Proud to feel when You are hosting Your Own Art Gallery (at least in an Art Gallery)
• No One to Give Extra Love to The Dogs Sometimes
• There would not be a Handsome Boy Dog named Paco that Is Your Dog. The Dog would be in an unpleasant place had You or Us, not taken care of Him.
• No One with Your Humor to almost name Your Dog, Paco; Grandpa Banjo before settling on Banjo and Finally, Paco because it sounded like Taco.
• Other than Autumn Foliage, No other Reason to Celebrate October.
• No One to talk about News and Politics, but in an Interesting Perspective than Others.
• No One to Write a Newsletter about Today (Hehe)
• No One to show us This Strange City that You live in known as Denver, Colorado.

So, as You can see, I have quite an Awesome Brother and I wish him to Happiest of Birthdays. All in all, I Love My Brother very much and I really do Miss Him a lot while He is up in Colorado. And, I cant wait to see My Brother doing His Dreams in The Future.

Thanks for Reading The Christianville Spirit. Every Now and Then, Show Your Family Member appreciation and Love. They will Love You Back!

The Christianville Spirit: PTLS Adult Struggles-A Christianville Classic

The Christianville Spirit

The Spirit that Keeps Learning with Hope and Resilience

October 17th, 2018-TCS # 611

Let’s Talk, My Readers! So, as The Late Joan Rivers would say on Her Show Fashion Police, “Let’s Talk”. “Let’s Talk” was her Trademark Line on that show when It came to Challenging Discussions about Who wore what at An Awards Show or Hollywood Event. But, For Me, This is One of those Topics that I struggle with Talking about because It is Very Real Topic to Me. The Struggles of a PTLS Adult. You See, Being in The Honoured Place of PTLS Ambassador, I feel that I represent PTLSers both Young and Old. Too Often though it seems that PTLS Family Members that have PTLSers that are past The Children Walking and Talking Phase I’m sure are Wondering, What about The Adults? You might ask. It is a Curiosity of Many, including those that are still in The Child Phase but, Isn’t mentioned as often due to Fact that Those with PTLS are Often Diagnosed as Children and Yes, There are Several PTLSers that were Diagnosed later on when They are already an Adult.  

However, It is safe to say that All PTLS Family Members are curious about What They’re child will be like when They are of An Age like Me. So, I came to revelation, I looked at My Christianville Classics List and Found My “PTLS Adult Struggles” Newsletter in The List but, I don’t remember Introducing It as a Classic Newsletter. If You have noticed The Newsletter on The List, Go ahead and Check it out along with Many Other Brilliant Newsletter on My Christianville Classic List. So, This is My Official Introduction of This Newsletter as a Classic. Without a due, This Christianville Classic Newsletter, “PTLS Adult Struggles”! Enjoy and I hope You have a Good Learning Experience!

This Newsletter was written on September 17th of 2014 (Refer to Newsletter 417)

So, As PTLS Family Members (I have Acronym’d them as PFMs) always wonder about The Life of A Young Adult with PTLS and What do They struggle with. Parents of Young Kids with PTLS often forget that The PTLS Adults also need Support for Different Things like Living Situation, Jobs, Romantic Life, and My Personal Favorite (Not Really!), Independence! At Least, that is What I struggle with.  So, I guess I will start with The Struggle with Independence because That often Frustrates me The Most. The Truth is, although I love My Mom and Love Living with My Mom, I will eventually want Independence. So, Let’s Start with What I can do. I can dress Myself, Feed Myself, Cook Meals (within Reason), Microwave Meals are the Best I work with if I am by Myself. I don’t work with The Stove if I am by Myself, If I do, I have to have Someone There. I could go to The Grocery Store to get things If I need to, only Problem is that, I don’t announce that I need something from The Grocery Store until It is almost Gone, so I need to Work on that, and I can Shave My Face (But, only Top half of My Face), because Shaving the bottom bothers me sensitivity wise, and The Motor Skills don’t help much either. So, Yes, I need Help with that, usually My Mom helps me with that. The Things that I can not do, I don’t Drive (that is okay with Me). Now, that is not to Say that I Can’t Drive because I have Driven a Car with My Brother in The Neighborhood and I have driven numerous Golf and Go Karts. But, Again, The Problem is that living in a Suburban City like Plano, I would be more of a Danger to The Other Drivers, as They would to Me. Add to that, that I am busy looking at all the Surroundings and My Reaction Time is Very Slow, so Someone could cut me off or Slam on Their Brakes and I wouldn’t be paying attention or I wouldn’t react as fast. I’ve always told Myself that, “If We lived in a Small Town where Everyone knows Me, then I would do better Driving.” In My Head (which is a Saying, I use ALOT!), People would know me well enough, that They would be like, “Oh, There’s Christian on The Road, be Careful!” and Next Thing that I believe holds me back the most is The Shaving. Now, before You tell me that I should use a Good Razor, I have tried Every Razor that I could. I use an Electric Razor because in My Head, It seems easier to use than a Straight Razor. Believe Me, I tried a Straight Razor once (a Single one) when I was Younger and it got caught and it ripped My Skin off on My Chin. The Next Thing that is a Struggle with is Finding a Job that suits me. Meaning a Job that is not too Overwhelming, Has a Calm Environment, and has Good Structure. Let’s not forget to Mention, Something that Interests me. Now, I have seen Jobs that I have liked like Navteq, The Weather Channel, and Google. I would want to do the “Street View” side of Google. As Far as Jobs that I have done, The First Paid Job was The Frisco Roughriders (a Double-A League Baseball Team) as a “PlayBall Attendant”, meaning Someone who passes out Programs to The Community. I have to say, although, I had to stand in The Heat most of The Summer, It was actually an Enjoyable Job. I also did “Kid Sitting” one fall, All I had to do was Make sure that He did his Homework. I did well at that job because I am a Rule Follower. Unpaid Jobs, I did what I now refer to as “Parking Lot Duty”, back when I was in 10.5 Grade (a Repeat of 10th Grade) which I had to walk the Staff Parking Lot and jot down the License Plate if They were parked in The Wrong Place. That Job, I am Very Proud of because I got 100% Compliance from The Teachers at the High School I went to. While I was doing that, I also Delivered things to different Classrooms as well as Office Work in The School Office. So, The Next Thing that I want to move forward with is My Living Situation, Now at the Risk of Sounding Negative about this, It is not really a Struggle but, a Concern. Currently I live with My Mom here in Plano, but The Concern comes in when I want to be Independent. I have told Myself that I have always wanted to live near The Smith Family and My Mom wants us (meaning Myself, Michael, and My Mom) to be near Each Other. I, of course, want to make sure that My Mom lives nearby so that She can help me. By Nearby, I mean, Down The Street, Next Door Preferably, or at least in The Same City. By The Way, as Far as Living Independently, I would probably live with a Roommate if I am Single at The Time (Which I don’t believe I will be!) or I will live with My Significant Other (aka, My Future Soulmate). I have a Feeling that She is Reading This, Secretly Admiring Me, even though I have never met her. Speaking of Romantic Life, that would be something that I am watching for. Although, I think that I would have Control of it for The Most Part, I would meet her, Date Her, and then Eventually, Marry Her. I would Love My Future Soulmate with All My Heart! And, I am sure that She would too. Considering The Fact that I get Anxious about New Things and New Events, I would hope My Wedding goes off Anxiety-Free. Which is Normal for Everyone to get Anxious about it. My Honeymoon will be Excellent, I have that all planned out to Possible Places to go! One Area that I am Really Concerned about is Having Sex with My Wife (This might be Personal, but It is Reality), due to having Texture Issues, I am not sure how I will respond when that time comes. Seeing and Touching Body Parts, and The Act of Sex may or may not go over so well. That Thought Alone makes me Very Anxious.

As Far as Married Life goes, Her and I would live together and Travel The World together! We would not have Children because They would be hard to take care and It is a 50/50 Chance of them also having PTLS. In The Event that We wanted Children, We would Adopt. So, All in All, It is not always Easy living with PTLS, but I would never give it up for Anything, Not even a Cure!

Thanks for Reading The Christianville Spirit. PTLS makes me who I am, Wonderful and Unique.

The Christianville Spirit: What's It Like Having PTLS (Parts 1 and 2) Rerun

The Christianville Spirit

The Spirit that Keeps Learning with Hope and Resilience

October 10th, 2018-TCS # 610

Hej, My Readers! Hej, by the way is the Swedish Greeting for Hello. It is Pronounced like the American “Hey”, only said twice in Sweden to sound like “Hey, Hey”. So, I never thought that I would have to mention a Hurricane in October. But, There is a Massive Hurricane hitting The Panhandle of Florida. As I write this, It is a Category 4, in which, a Category 4 (Almost Category 5) Hurricane has never hit The Florida Panhandle. Oh and Guess What The Name of The Hurricane is? Michael. Yes, My Brother’s Name is a Hurricane and as My Brother never does anything small, It is only fitting that The Hurricane with His Name is Big! Anyway, so Keeping with The Theme I have been following, I educated and Reeducated PTLS Family Members describing in short what PTLS was, Last Week I re-shared The Frequently Asked Questions about PTLS, Now It seems only fitting to talk about Another Question that is Very Common but, at the Same Time, PTLS Members be afraid to ask. What is it like Having PTLS? I wrote This Newsletter originally in Two Parts but, I decided to Re-Share The Newsletter that I condensed it by Putting both Parts together. In This Condensed Newsletter, I re-shared Both Parts as well as introducing The Originals as a Christianville Classic. As Reminder, You can see Both Parts of This Newsletter as well as Others on My Christianville Classics List. I will Let The Christian (Me) from August of 2017 explain more! As They say in TV and Radio, Roll It Guys!

Anyway, so This Week’s Newsletter is going to be a Real Treat, a Double Feature! Yes, My Readers! A Double Feature! So, A Couple Years Ago, I wrote Two Gold Newsletters that answer a Very Important Question that PTLS Family Members have, but might be too Afraid to ask and Hear the Answer to...For They fear that The Answer to Said Question may or may not be either The Answer They are looking for or The Answer They are wanting. However, I can assure you that The Question and Answer is not that bad. But, do take The Answer in Slow Segments. The Question is, of course, “What is it like having PTLS?” and I feel that These Newsletters explaining it should be a Christianville Classic! So, without further a due, This is The New Christianville Classic, What It’s Like Having PTLS (Parts 1 & 2). As a Reminder, All of My Christianville Classics are listed on My Newsletter Site. 

What’s It Like Having PTLS? (Part 1)

This Newsletter was written on November 28th of 2012 (Refer to Newsletter 327 or Classic List)

So, This Week’s Newsletter is a PTLS Parent-submitted idea that I’m going to take a shot at. You See, The question does come up every now and then about “What is it like to have PTLS” or “Why do you love having PTLS.” Now, for Me, I’ve lived through it my whole life but, I found out when I was 8 Years Old. The Doctors and My Mom told me I was unique and that I had something called a “Duplication of Chromosome 17” but, again in my 8 Year Old mind, I just understood that I was unique in some way. I was very proud to say what I had (and, I still am proud) but, I had a hard time explaining it to people, yes even Today. Of Course, My “PTLS Sister” will tell you what she has and tells you what she knows about it and says to “look it up”. Quite Frankly, though, I think that’s the best idea to do. However, when I was a High School age, we didn’t have a website or let alone ANY Information about it. Now, to answer the question of “What is it Like to have PTLS?” to me, It’s not a big deal that I have Special Needs (I am aware of it though) because I believe it makes me, Me. The best part about it that makes it a big deal is having PTLS Family Members all over The World. Of Course, with everything, it has Pros and Cons about it, just like Chicago O’Hare vs. Chicago Midway Airport, Irrelevant I know, but I wanted to stick that in there. Generally though, There are some wonderful perks to it, like that You don’t judge People by their looks or their story because we see the good in People, We have No Filter, which can be a good thing or bad thing depending on who you are listening to, and we love anyone and everyone, unless they really hurt us, then we don’t understand why people would be so Mean. If it were up to us, we would hug every person that looks Sad or who just feels sad. Then, there are the not-so-perky parts of it; the #1 less-perky thing about PTLS is the Anxiety. Anxiety can come from different sources like Trying New Things, the Doctor’s Office, or Irrational Fears. By The Way, We do have Irrational Fears that we go through, where it comes out of nowhere, strikes, and then goes away after a while. The next thing is Imitating, which can be Good or Bad depending on who or what your imitating. And the final one, It’s a pain when people look down on you, as if you are dumber or less-able than them, It’s where and why people call us, the dreaded R-Word. At Least, for me I get offended whether someone calls me the R-Word directly or indirectly. Even if they use it in a funny way like “That’s R-Worded” to mean that something is funny (I’ll save you from hearing or reading the word itself, but you get the point). Bottom line, I Hate that word. And Yes, I had a friend who did that a lot and I’m sure still does. So, He’s not My Friend anymore. As far as, Why do I Love it? Because it makes me unique and I love my “Uniqueness” plus, there are lots of Understanding PTLS Members all over The World and it gives me an excuse to visit those places. Understanding though, is the Most Important (I mean it with emphasis) part of having PTLS or Having someone with PTLS, whether it’s your son, daughter, cousin, or friend. Unfortunately, in some families, including my own, it’s hard for people to Understand. If you have Friends or Family that do understand, Never let them go and cherish them, because they will be your ringleader and on Team “Insert Child’s Name Here.” You need Cheerleaders in the times when we are Bullied or made fun of. I know I had Friends that protected me when I was younger but, didn’t know why. I didn’t know what a bully was until I got older. Now, I’m aware when people aren’t being nice. But, it doesn’t happen very often, thank goodness. So, all in all, just because people see me as being “Special” doesn’t mean, I’m not able.

What’s It Like Having PTLS (Part 2)

This Newsletter was written on December 5th of 2012 (Refer to Newsletter 328 or Classic List)

Well, Happy December, Everyone! This is My Most Favorite Month of The Year, more on that in a couple weeks. This Week, however, is sort of an extension of the question, “What is it like to have PTLS?”. I forgot to mention about 2 other major things about PTLS, that would be Imitating and Obsessing (we’ll call it OCDing) because we PTLSers have an Obsessive Compulsive Disorder behaviors sometimes. Now, I had a whole thing about Imitating, I figured that I had mentioned it enough in My Newsletters, but to my surprise and yes, some humor, You wanted more about Imitating. Last Week though, for those are new, I had written a little blip about Imitating and what it is like to have PTLS. So, anyway, let’s get to it! Imitating can be a good or bad behavior, depending on the source. Now, before you start asking, “What is the Source, you say?”. Well, The Source is what we’ll call, where the Imitation is coming from and there are many. The Main Sources that I look at when it comes to explaining is The Parents of The Children, Friends (Both Childs & Yours), Other Kids(Other Kids have a greater influence though), and Things on Television. So, considering that we listen to everything, wether we’re talking or not, we will eventually Imitate the things that we hear you saying or doing. The Best Rule to follow is if you want Good Behavior, put them around things of good behavior, in all the main sources. And, the same thing goes  for the opposite side. So, If you want your child to talk and I know many PTLS parents do, than you put them around normal kids who have good behavior. Here are some examples, When I was little (like 3 or 4 Years Old), The School that I went to, there was a kid who pinched people, so I started pinching people, so the teachers had to move me and the kid away from each other. For Eating, I didn’t eat very well but, I sat at a table with kids eating fruit and I started eating off their plates. I got in trouble but, My Mom was happy that I was eating. I learned to jump on The Trampoline, only when there were kids jumping on it, That was the best thing for Me. When the Speech Therapist would say, “Look at me” and turn my head towards her, I would do that to people who weren’t paying attention to me. I would turn their head and say, “Look at Me.” It’s not a big thing but, it was a big part of how I learned.  As for Me, I have Imitated since I was younger and I still do but not as much as I did when I was younger. When I was learning to talk, I would repeat the other kids, and they would tell me to stop repeating them. I did not know why they would get so angry with me. Usually, it takes a little while before I start to pick up whatever behavior I’m watching. Even the 2 Girlfriends I had, I Imitated their behavior; I talked like them, I thought like them, and I behaved like them. Anyway, now we move on to what can be (to outsiders and PTLS Parents themselves) an annoying habit, The OCDing. We PTLSers Obsess about different things; People, Objects, Interests, and Thoughts. So, usually we find something that interests us and we start to Obsess about it by thinking about it, talking about it, and researching things about it. The annoying part of it is that we don’t stop talking about it or researching until something new sparks our interests. For Example, After I spent a long time Obsessing about Ali, she was My 1st unofficial Girlfriend, I found everything with the name Ali in it and drove my Mom and Brother crazy always talking about it. After I broke up with her, I started Obsessing about New England, which was a nice change for everyone around me, but then it was a problem. Which to most people would think is healthy to think about other things besides the girl that you were with. Honestly, I believe that it helped me with getting over her because she was a nice girl. Anyway, I believe when I was around 7th Grade or so, I would pick a City or State to obsess about and they were odd places sometimes. Besides Atlanta, where The Smith Family lives, I would obsess (well, not really obsessing because I love Geography, but anyway..) I would Obsess about the places in between like Alabama, Mississippi, or Houston. In my head, I pretend that we lived in where ever I was obsessing about. When I was Younger, like back what we now call “The Mr. Jeff Era”(from 2nd to 5th Grade), we had a creek in the backyard and considering that I had gone to Laredo and Nuevo Laredo, Mexico with My Dad, I would pretend that Mr. Jeff’s House was the Welcome Center into Laredo, Texas, The creek was the Rio Grande River and, My School, Harrington, was in Mexico. I’m sure, My Childhood Friends hadn’t heard about this until now, or at least I don’t think. The tall-tale sign of what your child or myself are obsessing about is mentioned a lot whenever we talk about things over and over again, and never get tired of it. I have to be told to stop and move on to some other topic. Further toward My Present Age, If you have ever had a conversation with me, you would notice I’ve obsessed about Places like New England (like Vermont, New Hampshire, and Maine); Norway & Sweden (My Neighbor, Woody, and I have discussions about that a lot); The Caribbean (like Jamaica, The USVI, and St. Martin & St. Barths;  How News, The World, History, and Politics all tie together; and of course a share of Girls including Girlfriends I’ve had, Girls I like, and of course, My Future Soulmate. I should also mention, if you haven’t noticed, that we like to repeat ourselves, it’s another thing that we PTLSers do called Repetition. So imitation is often when we are young, but not so much when we get older. OCD behaviors help me to stay focused, so I guess it is a Good thing. Repeating myself and talking about my Obsessions, Well, that might drive others crazy, but I like it and so I keep doing it.

All in All, 

if your kids are imitating, hopefully its all good things. If they have OCD behavior, be patient with them because it helps them to fell in control and stay focused.

Thanks for Reading The Christianville Spirit. We all have our quirks and good reasons for them. Love us anyways.    

The Christianville Spirit: Review of PTLS Questions (PTLS FAQ)-A Christianville Classic

The Christianville Spirit

The Spirit that Keeps Learning with Hope and Resilience

October 4th, 2018-TCS # 609

Happy October, My Readers! Yes, Some People just love October. It means Autumn, Pumpkins, Pumpkin-spice Lattes, and Of Course, Halloween. Me? I only like it because It is My Brother’s Birth-Month and for Fall Foliage but, Halloween is Not My Favorite Holiday. Yes, At This Time, You can actually enjoy Pumpkin Spice anything now and No One will judge you! So, Onto This Week’s Newsletter. Yes, I do realize that I am writing this Newsletter a Day late but, due to Technical Issues at Our House that We had to tend to. I could not write it yesterday. So, PTLS Family Members, Lord knows, I Love Them! Even if a few drive me a little crazy, I Love Them anyway because I consider them, My Family. However, It seems like Everyday, that We get New PTLS Family Members, in other words, Those who have been Recently Diagnosed and Therefore, I find that Quite Often, I repeat Myself about Something I have told Another PTLS Member whether I have known them a Short Time or They are Veterans and I have known them a Long Time. I realize though, that like My Mom says in her Job Description as a Mom, “It’s in The Book of Moms”. Repeating the Same Story that I have told over and over is Part of Being The Self-Appointed Ambassador of PTLS that is Honestly, a Very Honourable Position for Me. But, then I came to Realize that A Newsletter that I did The Best I have done explaining PTLS in a Simple Format and Answering The Most Common Questions about PTLS, is not on My Christianville Classics List! I know, Shocker, right?! So, This Week I am going to do that. As a Reminder, You can always Check The Christianville Classics List for Some of My Best Newsletters. Also, While I am at it. Anytime, You can send me Newsletter Suggestions on Topics on PTLS and Otherwise, that You, My Reader, would like to read about.  So, Without Further a Due, This is The Christianville Classic Newsletter, Review of PTLS Questions (PTLS FAQ).

This Newsletter was written Originally on May 13th of 2015

But, I am running The Version that I wrote on March (Marzo) 8th of 2017 (Refer to Newsletter 536). Because I feel This Version is is Outlined Better

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. (Editors Note 2018) 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 31 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: 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!