July 17, 2019
The Christianville Spirit
The Spirit that Knows Love
July 17th, 2019-TCS # 647
I have PTLS and I am Proud, My Readers! Woah! This one is another Greeting of Mine that really means a lot! I have PTLS, ahem...(Clearing Throat) I am PTLS and I am Proud. Literally! As My Lil’ PTLS Sis’, McKenna would say! Yes, I realize that Yeah, I am sure that There are Parts of PTLS or Potocki-Lupski Syndrome that We PTLSers don’t like such as Anxiety or Easily Being taken advantaged of, but There is Something that All of Us PTLSers would not take away, Our PTLSers. It seems like Every Conference, Us PTLSers discuss things like Typical Adults do, but at The Same Time, We do talk about things in the PTLS Realm. A Couple Conferences ago in 2015, It was about Many Things including The Word, “Disability”, The Word “Mentally Retarded”. My Apologizes for that without a Language Warning! I should have mentioned at The Time that We were breaking down the Words like “Disability” Dis and Ability. You have the Ability to do something until You put the Dis before It. Last Conference in 2017, It was The First Time that I had met My (now) Lil’ PTLS Sis’, McKenna. I wrote The Following about Her in My Newsletter after I met Her. (Quoting Myself from 2017, Refer to The “PTLS Conference 2017” Newsletter, if You have not read it) “This Day, We had McKenna join us in Manning The Table. I will Tell You, McKenna is like a Mini-Me, not in Looks Wise, but The Things that She says. She only got The Diagnosis a Year and a half ago, and She embraces it like She knew She had it Her Whole Life and Truth be told, She did. As She will tell you, “Just treat me like a Normal Person” (Boy, that sounds like Me Because I say that all the Time) and That She was Happy when She was told that She had PTLS, like It was The Biggest Relief. Yes! That is what I Like to Say! By The Way, McKenna also confirms that Yes, Us PTLSers get Very Overwhelmed if Their Family takes them to Disney World. YES!! We All agreed to That One!” So, It seems fitting to Mention about All of Us PTLSers, Tyler, Stacy, McKenna, Allison, and Madison all agreed on. We all asked each other if There was Cure (And, We all know that being The Future, There eventually will be). We all agreed that although There maybe Some Things in PTLS that We may or may not like, We all would NOT Take The Cure. We agreed though, If It helped with Things a little bit (Assuming that There are No Side Effects. Which We knew that There would be) If There was a Side Effect, NO We would not take it. But, If It helped us, without The Side Effect then, Our Answer was Maybe. In this Conference, After Meeting Madison, who at First all of us did not think that We would click so well, We all did. Thinking about it, Madison, is as I told both her and McKenna, She is sort of like an “Adult McKenna” with the Same Embracing of PTLS that McKenna had as well as The Same Thought Mentality as McKenna. As I was saying, It makes me (Well, Us!) proud to say that We have, We are PTLS, It is makes us Very Proud.
So, With that Said, I am going to Rerun a Newsletter about Words that are used to Call People with Special Needs, Some are Okay to use, Others are not. This Newsletter will teach you about The Words to Say! I present to You, “Words that You call People”! Enjoy!
This Newsletter was originally written on July 15th of 2015 (Refer to Newsletter 457)
Howdy, My Readers! Thought I would do different greetings every now and then. “Howdy”, by the way, said better as “Howdy Y’all”, is What we say in Texas to say hello. Y’all, by the way is Texas Short-Hand for You All. Anyway, on to This Week’s Newsletter! So, Among the Many Things that us Young Adult PTLSers talked about at The PTLS Conference was The Meaning of Different Words that People used to refer to those with Special Needs. Also, How do we feel about “having Special Needs”? Well, The Truth is that I am aware that I have Special Needs, I embrace the Fact that I have Potocki-Lupski Syndrome, but at The Same Time, It is NOT Me. Not in the Way of Denial but, In a Way, that I personally don’t see that I have Special Needs because I am just Me, Christian. It might also help to the fact that I have had Potocki-Lupski Syndrome or Duplication 17p11.2 for My Whole Life, so really I don’t know any different. So, About The Words to refer to One with Special Needs, There are 4 Terms to use. A Disability, Handicap, Mentally Retarded or The R-Word of All Variations, and Someone with Special Needs. I, as well the Young PTLS Adults would prefer The Last One. Another One is that People think that PTLS is a Disease and I can assure you that It is Not. PTLS just happens, No Other Way to Explain It, It just happens. I see it more like it is a Serendipitous Accident, in other words, it is part of Your Destiny somehow. Anyway, Let’s Examine these Words. Now, I know that Words are Words but Many of These Words have Meanings. First Word is Disability. Disability, as My Young PTLS Adult Friend from The Conference says and The Word, Dis means, Anti or Against Something. In Other Words, You can not do XYZ. Ability, however means that You can do something. So, to refer to Me as Disabled means that I can’t do all the Things I want to do in Life and That is NOT True! Now, to be fair, There are People who are Truly “Disabled”, It is harder to do things but, They are Strong Enough to try their Hardest at it. The Next Word is Handicapped, Because I am able to Walk and Function as Typical as I can, that does not apply to Me. Respectfully, There are People that are Handicapped, even those that Do not have Special Needs. The Best Thing that You can do is ask if They need Help, if They do then, Help them and Mission Accomplished, They will be Grateful to You. If Not, then that is Okay too. Now, Here comes a Word that I do not like to Say Often, nor do I like to be called. Now, This Word comes from The Fact that People like to Compare Kids that have Special Needs versus Those that Don’t and Sometimes, It turns Ugly. We refer to it as The R-Word, Retard (Sorry Kids!). Now, The Word, “Retard” is actually a Cooking Term. You Know, when You are cooking something and The Fire from The Pan gets too High, You have to retard it. This is The Pleasant Way that I see that word’s use. However, The Government at one time used the Word “Mentally Retarded” or “Mental Retardation” to mean Someone with Special Needs, doesn’t sound too bad, right? After Rosa’s Law, It is now “Intellectual Disability”. Now, You drop The Word “Mentally” off That Phrase and that is when It is meant for Harm toward those with Special Needs. People say it in a Funny or Stupid Way, like “Ohh, That’s so Retarded” or “Your So Retarded” (pointing at Whomever did something Stupid, not meant toward Someone with Special Needs). I had a Friend that said that a lot and It annoyed me each time He said it because Said Person had Special Needs! Luckily though, There is a Campaign out there called “Spread The Word to End The Word” (STW, I call it for short) It is at www.r-word.org, Sign the Petition and Stop using The R-Word! And, finally, The Phrase that I would rather be referred to as “Someone with Special Needs” because that is Me, “Someone with Special Needs”, better yet a “A Person with Special Needs” because after all, I am a Person, just like You. A bonus with This Phrase is that it applies across The Board and does not in any way Offend anyone or Make Someone feel Different. So, What about The Other Words, Can I use them too? I would prefer that You not, but If You have to, Change The Words around so They sound better. Disability, How about Differently Abled (regardless whether They are actually “Disabled” or Not). Handicapped, That One can not be changed much because it applies to those are a Truly Handicapped, but Don’t use it on Me because I don’t see myself as “Handicapped”! Mentally Retarded, All Versions of The Word should be Taken Away except for The Original Meaning, which is for Cooking. and, Someone, Person, or People with Special Needs is probably the Best Word to use. All in all, The Point here is that I am just like You. Yes, I may need a bit of Help in certain areas and Treated Kindly, but I deserve to be treated as if I was like Everyone Else. No Comparing, No Name Calling, and PTLS is NOT a Disease, It is Only a Label!
Thanks for Reading The Christianville Spirit. We are all part of The World, We should Treat each other as Human Beings!
July 10, 2019
The Christianville Spirit
The Spirit that Knows Love
July 10th, 2019- TCS # 646
I Miss My Friends, My Readers! Wow! a Deep and Thoughtful Greeting! But, It is True, I miss My Friends! By Friends, in this Case, I mean My fellow PTLSers that I had a Really Great Time with! You See, I do have a lot of Friends both in the PTLS Realm that I talk to as well as Friends in My Personal or Local Realm, like Childhood Friends, Neighbours, and Friends that I have met via either My Mom or My Brother! Thanks Mom and Brother! But, In case, The Friends I miss are those who I talk to but not that often as well The Great Friends and New Ones that I met at The Conference. My PTLS “Sister”, Dani for example, I used to talk to Her a lot, like Everyday at One Point but, It is Hard to transfer Talking to Someone either Online or In Person, from The Time that You had Texting, Emailing, and Camming (Her word for “Webcamming”, i.e Skype, Facebook, or FaceTime) to Real Life Day-to-Day Life and Routine. So, We don’t talk as often. In The Case, that I am talking about. My Friends that I met at The Conference a little more than a Week ago. All of Us were quite Content Hanging out on The Couches nearby The Conference, Walking around The Hotel, or In One Case, Hanging out in Each Other’s Hotel Room, just sitting on The Couches talking and laughing while Glancing at The TV playing every once and while. It was Nice and Quiet for all of us. To Think of All the Fun that We had, I thought it was not a Big Deal wanting to Hang out together in The Hotel Room. But, I did know that in The Context of What Sheldon of The Big Bang Theory calls “Social Convention”, so Wanting to go with a Group of PTLSers to Another PTLSers’ Hotel Room to hangout was in “Social Convention” a Very Typical Young Adult Behavior kind of Thing to do. I will say though that Looking Back on it, Just spending The Evening hanging in One of The PTLSers Hotel Room, Just Us, not a lot of Activity. I think that was The Best Highlights of The Conference that We had and I’m sure that Our Parents were Extremely Proud! Come to Think of It, The Time with Tyler and I watching The Fireworks from Our Hotel Balcony, that would be a Highlight too. I can’t tell you how Nice it is to have just Small Group of Friends (be it PTLS Friends or Personal Friends) just hang out, not a lot of Activity. We don’t need a Party with a Bunch of People because like having too Many conversations going on that You want to listen to. We don’t need a lot of Activity going on around us either because It would distract us and then, We would lose our Train of Thought and Have a Hard Time getting back to What we were Talking about because of Short-Term Memory which We PTLSers tend to have a Problem with.
We would Prefer a Small Party with just a Small Group of People. I think that I have always been that Way, even when I was little where I just wanted a Small Group of People.
Now, the Thing is, even with FaceTime, Skype, Facebook, Whatever Avenue that You choose in “Camming” or just Texting. It is still not The Same as saying, “Let’s go Hang Out at XYZ Place!” ;“Let’s all go Walk somewhere”; or “Let’s all go to So-and-So’s Hotel Room and Hang Out”. Honestly, that is what I miss the Most. Seeing each other in Person and just Hanging out. It often takes Work for us to get out and about because We are HomeBodies and We don’t want to get out into The Overstimulation that happens in The World. All in all, When We get finally together, It is like We just saw Each Other Yesterday!
Thanks for Reading The Christianville Spirit. Embrace PTLS and Embrace Your Friends.
July 3, 2019
The Christianville Spirit
The Spirit that Knows Love
July 3rd, 2019-TCS # 645
Happy Independence Day (or Fourth of July), My Readers! Well, My Readers in The United States, “The USA”, “America”, or whatever you like to call it; Happy 4th of July! For those outside The United States, July 4 is just another day. You See, every country in our lovely World of 246 Countries, we have our own little “Special days” in our own countries. So, on to This Week’s Newsletter! All I can think of at The Moment is Wow! Just Simply, Wow! This past Week I went on a “Official PTLS Business” Trip to Houston, The PTLS Capitol, for The PTLS Conference. (Record Scratching Sound) Actually, This Year, We swung it an Entirely Different Direction! This Year, We actually had Our Conference in a Different City, My Home Region of Dallas-Fort Worth! Yes! We decided that This Time’s Conference was going to be Different. PTLS Family Members, We have studied, said that if They are going to be coming a Long Way to Texas, We should give them More Texas and The Dallas-Fort Worth Area is definitely Texas! No Offense, of course to The PTLS Capitol of Houston. Yes, It is that time again for The PTLS Conference. This Conference, I have to say, was a PTLS Conference that was unlike any other that We have done.
Now, Okay, to Date, We have had 5 Conferences so far held in 2009, 2012, 2015, 2017, and This Year, respectively. This Conference was different in many different ways. The First being that This was The Fifth Conference in Total but, First Conference that We had in a Different City. Of Course, Like The Last Conference, My Mom planned it all. Yes, She planned it along with Help by The PTLS Foundation and The Hotel’s Event Planners. Also, There was a just a little less People there this time around so It is Less Overwhelming, But My Mom was able to plan time for families to have Alone sessions with some of the Doctors, And More time to ask questions. It was a lot easier to Plan This Conference because Our Hotel was only about 45 Minutes from Our House. Funny Thing, When We came up with The Idea, I first thought of Downtown Fort Worth until I remembered that It would be Difficult for People to get there. Dallas-Fort Worth is a Big Metroplex! You would have to Rent a Car to get to Downtown Fort Worth. Next Idea was Arlington. Entertainment District of Arlington, a little too much stuff! Nope. What about Grapevine, literally a stone’s throw from The Major Airport?! Beautiful and Historical Downtown Area; The Mall, Grapevine Mills with an Aquarium and Legoland; A Huge Hotel, The Gaylord Texan; and, Of Course, The Airport within a 5 Minutes Distance. That is Perfect! Grapevine It is! So, Last Tuesday, My Mom and I drove out to Grapevine, only a 45 Minute Drive and We were at The Site of The Conference. It was The Weirdest Experience! Compared to Driving 5 Hours south of Houston. So, Tuesday, We welcomed Our PTLS Family Member Vivian and Of Course, can’t forget My Lil’ PTLS Sis, McKenna! I was Very Happy to see her again! We had a Small Party on Our rather Large Room which had Two Bedrooms, hanging out with Them. The Hotel was gracious enough to give us a Little Upgrade! We were being A lot of People to Their Hotel anyway. Later, My Brother flew in from Denver to join in The Conference Fun! Wednesday, We did some Final Conference Prep. like Getting The Welcome Bags Ready and Making Sure Everything was running Smoothly. Of Course, Vivian and McKenna could not come to Dallas without Me showing them, The Huge Hotel, The Gaylord Texan! They were Very Impressed by It1 They were actually amazed by How Big The Place was. We had a Big Lunch there after Exploring Everything, We ate at The Sports Bar/Restaurant with Huge TVs! On Thursday, It was going to be a Busy Day! Greet People coming in, which went differently because of the Closeness to The Airport as well as Prepare for Our Evening Reception which was Really Awesome. My Mom set up that We would have a Few Speakers after We literally had 4 Stations worth of Food to Eat. Yes, You heard me! 4. Stations Worth of Food! Salad Station, Tex-Mex Station, Pasta Station, and of Course, a Macaroni and Cheese Station! I think The Macaroni and Cheese Station was The Hit for Everyone. Plus desserts!!! Now, We did have Dr. Lupski on Video to speak and Of Course, The Sibling Talks with McKenna’s Sister, Samantha and Yes, Even My Brother, Michael! Now, I did not see it but, What I did see that My Brother did, make me Extremely Proud of Him. My Brother answered PTLS Family Member’s Questions, Hung out with Them, Talked to Them, Interacting with Them, and Best of Treated them as He would treat me! Boy, was I a Proud Brother! Now, Of Course, Throughout The Conference I had a lot of Fun of My Own. Most of The Conference Days of Friday and Saturday, I got to hang out with My Fellow PTLS Young Adults and Teens, including My Lil’ PTLS Sis’, McKenna; PTLS Brother, Tyler; Stacy, who I have known since The Beginning (as in it, Stacy was The First Person with PTLS that I met); and, then Alyson and, a Two New PTLSers that I have never, PTLSer Madison and PTLSer Daniel. Between all of Us, You would swear that We were Near-Typical Adults acting somewhat typical for Our Age. We did have a Several Great Discussion between McKenna, Alyson, Tyler, Stacy, and Madison that was a Rather Deep. Including Most Annoying Thing about PTLS, Texture Triggers, What They thought about PTLS, Our Interests, and Of Course, Talking if There are a Cure for PTLS, would either of us take it. The Question I asked was that If There was a Cure for PTLS (Because In The Future, eventually There will be), would either of us take it. All of Us said No!!! We agreed that If it helped a little bit, like with Anxiety, then Maybe but, If it came with Side Effects (which a lot of Medicines do!) then, We all said Heck No!!! On Friday Night, The PTLS Foundation Board and The Doctors had Dinner together and Some of Us PTLSers ate Together at The Restaurant at The Hotel.
After We had all of Pictures taken on Saturday Morning, which I thought We were going to do on Friday Night but, I digress, McKenna was not having it afterwords. Rightfully so though, because a Loud-Crying Baby was Next to Her while We were doing the Pictures. PTLSers don’t deal with Distress or Crying Babies very well! Anyway, so McKenna spent a lot of The Day relaxing in Her Room because She had enough of all the Activity for The Day. Later that Evening, after Madison left to Fly Home, all of Us were Sad about Her leaving because She was The Entertainment of Our Group. But, After We went to Dinner on Saturday Night, I knew that McKenna had missed out on a lot but, I knew that at the Same Time, She wanted to hang out with Me, Alyson, and Tyler. So, We asked if It was Okay before hand and Me, Alyson, and Tyler went up to McKenna’s Hotel Room and hung out with Her. Again, It was not that Big of a Deal to Me but, by what Sheldon from The Big Bang Theory referred to as “Social Convention” Context, It actually was a Big Deal. Very Typical Young Adult behavior. We actually had a Good Time hanging out up with McKenna and I’m pretty sure that McKenna herself enjoyed it as well. After We were Done hanging out with McKenna, Tyler and I were about to Call it a Night when I called My Mom and asked her where She was, and She told me that There were Fireworks happening in the distance, so We both rushed up to Our Room to sit on The Balcony to watch The Fireworks. After that, Tyler and I hung out for a little while longer and then, Tyler had to go back to His Room. On Sunday, We had Breakfast one last time and Hung out with Alyson and McKenna because Tyler had left already. Vivian and McKenna weren’t leaving until The Evening. So, We stayed and had Lunch with them. and, Then We all said Our “Until Thens” and then, We headed Home. All in all though, It was Great, Brilliant Conference! I would totally have it in Grapevine again! and, I am glad that I have and made such Great Friends!
Thanks for Reading The Christianville Spirit. Why try to fix a PTLSer, when We are Happy with Our Life!
June 19, 2019
The Christianville Spirit
The Spirit that Knows Love
June 19th, 2019-TCS # 644
Hej, Ciao, and Bonjour, My Readers. I am saying Hello to You in Three of My Favourite Languages; Swedish, Italian, and French. Funny, My Mom’s Side of The Family is both German and Italian. Personally, I like the Italian Side, The Food and Music side of them. But, Of Course, Who wouldn’t like Italian Food! If You didn’t, an Angry Grandmother would be after You. You-a No Like-a My Food?! Anyway, on to This Week’s Newsletter. So, I would be Lying if I did not say that There are Times when I really Miss My Brother! There are Times when I really miss having him around, I miss hanging out with Him, and I miss What My Uncle Craig would call “Goofing Off” with Him. Now, Luckily, My Brother is going to Town next week and I am Very Happy about that, but I still wish that He was around a lot more Often. In August, It will be The 4th Year that My Brother has been in Colorado. Now, I have always been the Kind of Person that Let’s You do what You need to do and leave you alone. If You need to Spread Your Wings and Be Away for a While, that is Fine as long as You eventually come back; If You need to Work, Whatever, that is Fine. But, I feel that I am a bit too Lenient about Letting People do what They need to do. Of Course, I’m not going to be a Dictator and Say “You need to do XYZ!”. Now, I am sure that You might say that I could just call him on The Phone or Skype Him. Well, My Brother has a rather unpredictable Working Schedule, for Me, anyway, that does not work. I would rather have a Time that is always near-Guaranteed to be there. And, Finally, and Most Importantly, sometimes, When You move to a Part of The Country or Even The World, You end up having What I will refer to as The “Local Version of Yourself”. Now, Sometimes, Said Local Version of Yourself, is not always a Good Version of Yourself. for Example, My Brother, Lord knows I Love Him but, He has a “Local Version” of Himself that honestly, does sound or look like The Brother that I know and love, which Makes Me Miss Him more. Him, meaning The Funny, Loving, and Goofy Michael. Now, Yes, He still is those things in His Heart, I know that It is still there but The “Colorado Michael” is in Effect right now. Now, I realize that We will all have Versions of Ourselves that Either Our Family or We, Ourselves, don’t like about Them or Ourselves. Heck, I could move to a different part of The Country or The World, or Meet Someone and Not like that Version of Myself. Anyway, Just a Thought. So, This Week, I want to Re-Share a Newsletter about One of Those Times where I talk about How Much My Brother means to Me!
This Newsletter was written on June 24th of 2015 (Refer to Newsletter 455)
Hola, My Readers! I thought I would try a different greeting for You. Hola is Hello in Spanish, by the way. A Happy Birthday to My Dog, Zoey too! So, This Week I am going to talk about something that is a Bit Hard on Me and Something that I (as well as My Mom) have Many Viewpoints about. It involves a Big Change in Our Family that is likely to help us Grow as a Family. You See, I am sure My Veterans (My Term for those have been reading for a While or Since The Beginning) know that My Brother once moved into His Own Apartment and I thought THAT was a Big Deal, Mind You, the Apartment was like a few miles West of Our House. Okay, then Michael moved back home and then, later after High School, He moved to Denton. That One was surprisingly easy because I had been to Denton a few times before and it was a Pretty Nice City. Well, This Time, Michael is moving again. This Time though, Michael, My Brother is moving to Colorado. Yes, that is right, Guys. Colorado. And, This is getting to be pretty soon, like August 1st soon! So, Let’s start some Questions. Why is He moving to Colorado? Well, for Many Reasons, among them, He is Outgrowing The Dallas Area, There is nothing here for His, Let’s just say “Funky Art”. Secondly, He is moving because of The Adventure, namely the Mountains and Nature Abound, perfect for things like Rock Climbing, Camping, General Fun Stuff. In Other Words, I see that He is moving there to Have Fun. Now, This is The Point where I have Three Voices in My Head, One of Himself, one of PTLS Brother, Tyler and One of My Friend, Deb. Kind of reminds of that new movie, Inside Out, even though I have not seen it. My Brother’s Voice would say, “It’s Time to Grow Up, Don’t Be Scared and Just Do It!”; My PTLS “Brother”, Tyler would say “Have You been to Colorado? Then, Quit Bashing It!” (Why Yes, Voice of Tyler, I have been there and I Love It! Crested Butte, by the way) and Of Course, The Rational Level-Headed Voice of Deb says, “It is HIS Destiny” So, How do We feel about It? Well, That is where it gets a bit a Crazy. Now, Don’t Me Wrong, Colorado is Beautiful State, Stunning Even, Maybe an American Version of Switzerland! But, In My Head, looking at My Little Trusty Map of Family (both PTLS Family and Smith Family), There really isn’t much Family out there, or at least any that We are close to. I personally would rather Michael go East toward Family like North Carolina, Dahlonega maybe?, I would take The West’s Oregon if I had to because it has The Grant Family which are What I will refer to as The “West Coast Smiths” (Even though, They aren’t really Smiths). My Reasoning for that is because I want to be closer to Family. My Mom, of course, This whole deal is going to tear her up and All of us know It. My Mom also wants to be near Family, but at The Same Time, wants to be near Michael as well, You Know as Any Mother would. That and She would not want to Travel an Ungodly Amount of Miles or Hours, to see The Grandchildren that she wants to have and Honestly, I couldn’t imagine that! Also, The Fact of that He will be My Guardian in The Future, but I think that is another story for Another Time. My Biases aside, I feel that it is splitting us up and It is not Anyones Fault really. My Mom and I don’t see him as much, maybe Once or Twice a Week. I am led to believe that He is “breaking up” with Us so that He can grow and Spread his Wings a little. He needs it, after all. He has had Many Opportunities, too many to name and He has usually stayed here, Not Because of My Mom and I, but because of, to put it lightly a “Girl Force”. Now, He did have an Opportunity to go to College in Boston, but I believe that Might have been because of Us (He would have missed Us and Mommy’s Care-Packages!). But, To Be Fair, If He has to spread his wings and Leave Dallas, then Now would be a Good Time and a Bonus here! His Friends are backing him up with this One. So, like I said, He has to get out to Dallas, (Not that there anything wrong with Dallas!) and See that is more to America than The Suburbs of Dallas. A Secondary Note here as well, My Dad has moved to Arizona and He is pretty happy out there in the 100 Plus Degree Heat, Oh Boy! By The way, with all of this stuff about Michael moving to Colorado, He prefers Warm Places, He does not like The Snow. Hmm... That should be Interesting! But, Who knows, He may go there and stay a Short Time and then Move On. Maybe, it is a “much ado about Nothing”, or maybe My Mom and I are on Our Own Track for a While and Michael will come back to Family when He has had His Fill, You never know. I guess that Rational Voice of Deb might be right, “It is a Matter of Destiny!” All in all, We all have SOME Kind of Destiny to follow and Sometimes, It may or many not align with Someone Else’s Destiny. So, Somehow and Eventually, Destiny brings us all together. So, with that said, If Your Destiny is different (or The Same) than Mine, Michael, You will always be My Brother and I will always Love You!
Thanks for Reading The Christianville Spirit. If You have a Good Destiny, Follow It!
June 12, 2019
The Christianville Spirit
The Spirit that Knows Love
June 12th, 2019-TCS # 643
Hoi, My Readers! I present to You, a New Greeting! This Greeting is from the Netherlands, Holland, or Both. Hoi, which I am told is pronounced like It looks, Hoy. Hoi, by the way, is Dutch for “Hi” commonly said among People that You know. Alternatively, Hallo (like the German and Swiss German Hallo) is used to say “Hello”. So, Being in The Honored Self-Appointed PTLS Ambassador, Meeting PTLS Family Members as well as Proudly Talking about PTLS as an adult with this is just what I do. This Job, not really a Paying Job but, Something I do that I like to say is a Job, comes with Talking to and Meeting PTLS Family Members, therapists and Teachers from All over The World. I get them in all Kinds! The Veterans, Those who have been here since the Beginning, as in before PTLS was named and going into The Naming of PTLS; There are The Post-Naming of PTLS, Family Members Those who are told that Their Child has Potocki-Lupski Syndrome. Now, Some Members are Blessed to have a Doctor that will learn some of It and Tell them a little bit about it. Then, Of Course, The Doctors that don’t know anything about it. In Other Words, they might as well as be Saying that Your Child has some foreign syndrome, Don’t know what it is, Okay, Move On! Next Patient, Please! Okay, so the Doctors are kind as they can be, but I am sure that That is What The Members feel like happened. Perhaps, The Doctor did say something about it but, All the Parent heard was “Your Child has Something called Potocki-Lupski Syndrome..” It is Sort of like Autism... (“Wah-Wah-Wah” Sound like Charlie Brown). So, These PTLS Family Members range from Pre-Veteran across Mid-Time and Into The Newer Side of The Family. The “Welcome to The Family” New PTLS Family Members, The Ones scared to Death, Literally. Okay, If You are New..I say with The Most Gentile Love and Hug and Saying, “Welcome to The Family! Everything will be Okay!”. The New People are usually the Ones that I want to Make Sure that They get the Most Accurate Information, from The PTLS Foundation as well as a Lot of Love, and to be, Given The Information at a Slow Pace, or Whatever Speed that They feel comfortable. Veterans, Imagine driving onto a High-Speed Highway where Everyone in The Far Left is Blazing By, Knowing and being Comfortable on The PTLS Highway, everyone is The Middle is going Fast to Medium Speed, and then, The Right Lane is going Slow, they are just learning! But, The Fast Ones think that You are in The Way, What Lanes do You choose as a New PTLS Family Member? Now, Yes, All of Us PTLS Family Members at Whatever Stage from Veterans to Brand New, at Some Point go through That Same Feeling. The Grieving Process. The Feeling of Your Child won’t quote-end-quote “Normal”. I would say “Who Cares about Being Normal?! Normal is Soo Overrated!” Now, No, I’m not saying “Get over It” But, I am saying that It is Your Process that as a Member of The Family and Yes, even Our Veterans go through it Every Once and While. But, It is Okay! Oh Yeah, Do Remember what I said about The “Normal” Thing, Repeat it over and over. Eventually, You. Yes, You, My Reader, will Believe It! Anyway, I wrote a Older Newsletter that I want to share that Might help with The Process! Okay, Good Talk Everyone! Big Group Hug in 3...2..1! Big Hug! Everything will Fine! and, Of Course, as I said before, Welcome to The Family!
The Newsletter that I am about to make a Christianville Classic is a Newsletter called “A Rant about Parents”. I believe that it explains perfectly about How Literal us PTLS’ers are.
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, “A Rant about Parents”!
This Newsletter was written on June 4th of 2014 (Refer to Newsletter 404)
Welcome, My Readers! To a Fresh and Redone Site that is The Christianville Spirit! I decided that My Site needed a bit of Revamping, which was one of My New Year’s Goal. So, I hope You Guys enjoy it and Let Me Know what You think. So, Anyway, At the Recent Revelation, I know that it is always a shock to find out that Your Child has PTLS and You don’t know what it is or What to expect. To try and Help You Understand from My Prospective of having PTLS, How about I do this? I am going to do a Hilarious Rant, courtesy of Us PTLSers! This is to Prove to Everyone that We PTLSers are like Everyone Else. So, without further a due, Here it goes.
Oh My Lord! I can’t tell you just how Worried My Parents are about Me! They are Concerned about Whether I am going to Eat, Walk, Talk, and Soo Many Other Things! First, The Eating. I am going to start Eating on MY Time, NOT Yours! It will be when I want to But, Please Feed Me something that I like! Even if It seems like The Most Ridiculous thing to always have the same thing every day, Day after Day, I like it that way. I may not like the texture, so it is going to take me time. On to Talking, as Chris Rock in Rush Hour says, “Can You Understand The Words That Are Coming Out of My Mouth!?” Because, let me tell you, The words are Clear as Day in My Head! I know it must sound like I am speaking a Foreign Language to Them because It doesn’t seem like They Understand My Mumbles and Hums in Their Ears! I think I am speaking pretty clear, but they keep saying, “I cannot understand him. What is He saying?” So, I will work on making those words clear!
My Parents! They often take me to this Strange, Distressing, and Horrible Place, known as The Doctor’s Office! They poke and prod me like I am some of kind of Pin Cushion! I am just like You, Mommy and Daddy! I don’t Like It! I am sure I have to have these things done, but, I am a kid who does not Like it. So, Don’t Get too upset if I start Crying or not wanting to hold still, but do what you have to do to make sure I am healthy. Sometimes, I hear you getting upset either at Me or for Some odd Reason, because I am not doing what You want me to do. Really, I will progress and learn to do things, I just like to take my time. Just wait, it will happen when you Least expect it! My Parents! They take me to these Huge Places like Disney World as They tell me, “Ohh, This is going to be Soo Much Fun!” and There is SO MUCH NOISE! I can’t take it! Too Much Noise and Activity! I am Completely Overwhelmed! Tantrum coming in 3, 2, 1. MOMMY, I WANT THIS THING! I DON’T WANT THAT! I wanna go Home! Once I am Home, Ahhhhh! Back to my Nice, Quiet Routine. By The Way, I should mention that Routine is like Muy Important to me! You see, it helps me. I Have to Wake Up at The Same Time (“Rise and Shine” as My Mom says), Eat at The Same Time, and of Course, Go to Bed at the Same Time, even if It means 2 O’ Clock in The Morning, for The Older PTLSers. I know parents have a hard time with this, but, jeez! I really need it! Oh, and when I get to meet other “People like Me” at first, I’m nervous about it thinking, “Oh Boy” this is going to tough. Then, I am Excited once I get to Know them. When I see or read about my fellow baby PTLSers, I say, “Hey! They are doing what I did when I was that age! Let’s Imitate each other!” Please understand, I gotta be near Kids who are what My Parents call “Normal Kids” Hum... What is That? I do not know the difference! As We get older, We will find out what that “normal” is, but, It is Okay with us. It really does not bother us, unless you keep reminding us that we are not “normal”. In my mind (as I like to say all the time), I thought I was. Oh! I forgot to mention My Parents take me to This thing that They call “Therapy”. Day after day after day I go to see someone who helps me with moving my mouth trying to get me to talk. Then It is someone who is trying to get me to move in a certain way. Oh, sometimes it is just too much for me. Again, here comes a melt down! I don’t know what it is, sometimes it seems fun, but Gosh, Let Me Do Things at My Own Pace! I promise you I will get there! I am not good with figurative language, since I am so literal, but I think I was taught in my “figurative language class”, I Will cross that Bridge When I get to it! Just wait for Me to get to the other end of The Bridge. But, I have to say that my parents are so worried and they lose patience. What am I to do with Them? I wish I could tell My Parents that I am and Will Be Fine, even though to Them, I might not seem like it. So, from me and my fellow PTLSers (Especially the Babies Who are just beginning this Life), It is really Tough trying to teach you Parents about Us. So, We will be patient and Keep smiling, because that is what we do Naturally, and Stay Happy, because that is how we see life, and Wait for you to learn. Life is Really good in our eyes. You are doing a Great Job! So, All in all, Gosh My Parents worry about Me! But, I Worry about Them too and I Love Them!
Thanks for Reading The Christianville Spirit. Embrace PTLS, We are Humans just like You.