The Christianville Spirit
The Spirit that Brings Hope
April 1st, 2020- TCS # 682
Happy April and Ciao, My Readers! That is a Greeting among Friends in Italian. Oh Yes, It is that Time of The Year, That Month that Those in My Family dread, April.
I am sure that All of You have That One Time of The Year when If Any Anything Bad is going to Happen, It is going to be in That Month. In Other Words, In Everyone’s Family, There is always that One Month of The Year that You dread it coming because You believe something crazy is going to Happen. For Some, It is a Months like September (for those of 9/11), October, May, or (Hopefully Not) December. For Our Family, It seems to be April.
Now, It seems as though The Month before April, March (Marzo) was not as Good as It usually is. Looking back on it, I am glad that PTLS Awareness Day was, when It was. Because unfortunately The Coronavirus (Yes, My Readers. it’s that Term that We all Love to Hate!) took over and Yes, There was some Awareness of PTLS after PTLS Day but, I feel that Coronavirus kind of pulled All The Fun of Our PTLS Awareness Month away. So, This Week, We are making a Deal. Due to Coronavirus...Trust Me, Folks! This is Good News! We are extending PTLS Awareness Month by Another Week to make up for It. So, Still Wear Your PTLS Shirt! Even though You are at Home, Spread Awareness in Any Way You can, even if FaceTime, Skype, or even Zoom is Required. While We are at it, Zoom your Friends and Tell them all the exciting things of What Your PTLS Child might be doing at The Moment. Of Course, Remember that just because PTLS Awareness Month will be over, does not mean to stop Spread Awareness! So, To Lift Everyone’s Spirit, This is My PTLS Awareness Extension Finale!
I will let The Me from Last Year of 2019 continue.
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 going to Rerun is 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.
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