July 8, 2015

The Christianville Spirit: PTLS Conference



The Christianville Spirit
The Spirit that Sparkles
July 8, 2015-TCS # 456

Welcome Back, My Readers! We are getting back on Normal Schedule for Newsletters. So, 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. 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 3 Conferences so far held in 2009, 2012, and This Year, respectively. This Conference was different in many different ways. The First being that My Mom planned it all. Yes, She planned it along with Help by The PTLS Foundation and The Hotel’s Event Planners. So, We started with Driving down to Houston on Tuesday so that My Mom could make sure that Everything was Solid and make sure that Everything is all according to Plan, that and Two Other PTLS Members were already there. My Mom had to make sure that just in Case we stayed for 4th of July that We had a Room that We could see The Fireworks, You never know! They first put us in a Room facing Buildings, Nope. Then They put us on The Top Floor of The Hotel and also on The Concierge Level along with Members of The Board of The PTLS Foundation. We were Very Blessed to say the Least! My Mom did mostly all the planning, so She deserved a little Splurging! Anyway, We had a Nice Dinner with a PTLS Member from The UK, We went to a Southern Food Restaurant and That was Fun. It started Raining REALLY Hard on the way to The Restaurant and even harder once We got inside The Restaurant. It was kinda Funny talking to This PTLS Member and Teaching Her what each Menu Item was. We had Fried Chicken, Fried Crab Balls, and Shrimp and Grits (oh and I am sure My PTLS “Brother”, Tyler would be so Proud). It was Interesting explaining food that is Normal to us to Someone from The UK. Wednesday (Newsletter Day), We played the Part of “The PTLS Conference Welcome Committee” and We welcome PTLS Family Members, New and Old coming in. A lot of People did not get in until Late because of The Weather, It had been raining on and off during The Day yesterday and on Wednesday. Wednesday Evening, We had a Meet and Greet but because of The Weather, People were Delayed coming in and were Very Tired arriving. For The Next Two Days, Thursday and Friday were The Main Conference on Thursday which pretty much went on All Day and Break-Out Sessions on Friday. Thursday was The Part where Everyone heard all The Information about Potocki-Lupski Syndrome including Dr. Potocki and Dr. Lupski speaking as well. Even My Mom got to speak this time around! Maybe that was because She is Very Knowledgable and She is The President of The PTLS Foundation. So, What did I do The Whole Time? Well, I told Myself that I would at least sit in The Conference until Lunch, The First Half. Luckily though, There were more PTLS Adults this time. So, We sat through 3 Speakers (including My Mom) and then, The First Break came and We PTLS Adults decided to sit the rest of it out. So, There were 3 of us that hung out together, but There was a Total of 7 of us. At First, after Everyone went back into The Conference, I thought “Oh Man, PTLSers are a bit awkward meeting The First Time, This should be Interesting!” and then, One helped us start Talking. We talked about Many Things including The Word, “Disability”, The Word “Mentally Retarded”, Watched several YouTube Videos, Listened to Music (One kept us Entertained with that), and The Other and I were “Self-Appointed PTLS Ambassadors” (Something that I claim about Myself in The Most Humble Way!). We did all have some of Parents of PTLS Kids come to Sit and Listen to all Three of us talk. Later, After Lunch, We went down to Starbucks to get a Smoothie and The Hotel’s Starbucks was closed so We had to walk down The Street to The Starbucks across The Street. Now, This Conference was Different because We would normally have it at Texas Children’s Hospital but, My Mom decided that it would be better to have it at The Hotel that We normally stay at, to Help Everyone. It was probably The Most Genius of Ideas because People could take their children up to Their Room if They got cranky, tired, or needed a Nap. After We got back from Starbucks, We sat at The Registration Desk to help one of the other PTLS Foundation Members if She needed it. After a While of Sitting there, One of The Girls got bored and turned on Some Music and She started Dancing. We all kinda watched her for a Minute and then, Decided to Dance with Her. We did a bit of The “Cha-Cha Slide” in Our own Way. Then, We played “Boot Scoot Boogie” and Tried Our Own Version of Line Dancing (Only in Texas!). That evening after The Talks were over, We went to a Dinner for The Doctors and Myself, and The Other Adult PTLSers got to Eat Dinner together. I will say that We had One of The Best Conversations about Everything that PTLS Adults think of, about as close to Typical Conversation as We probably had. (Again I am sure that My Mom would be Proudly in Tears, if She had listened to what We said) Everyone Else’s Brains were fried to say The Least, A lot of Information to Digest for People. I will say that Our PTLS Conferences can get a Bit Overwhelming for Everyone because of All of The Information that is being Told to You. I pictured it like having a Pizza bigger than 16 Inches and having to Eat it All in One Sitting, All Day. And, What if You don’t normally eat Pizza or a Pound of Pasta, It is a Bit Overwhelming, isn’t it? Now, I’m not saying that You should not come to The Conference, I am just saying that It is a lot of Information. Now, If I was in Your Place, Not having had PTLS My Whole Life, It would Extremely Overwhelming. Now, I do get Overwhelmed myself when I am there because of All The Activity and All The People that I really want to talk to (and, Vice Versa). On Friday was The Break-Out Sessions, This was The Time to Ask Questions about PTLS and In a Way, Talk to Other Parents and Get the Idea of PTLS wrapped around Your Head. We had several Doctors do their Own Break-Out Sessions as well as My Mom and 3 Other Moms doing The Parent Panel which is usually My Favorite to Sit and I can share My Own View about PTLS to those sitting in There. It also helped to hear about What Other PTLS Adults Lives are like. So, It gave Everyone including Myself a View of The Different Ways that Young PTLS Adults are Living. It was Very Interesting to Hear, to say the least. After The Break-Out Sessions, It was Time for Everyone to get going or Head Out to Lunch. This was a Time when It was Overwhelming because I wanted to do My Final Round of Talking to Everyone and Give Hugs, Make Sure Everyone was Okay, and Of Course, It was also when Everyone wanted to take My Picture with Them. On Top of That, My Friend Allan (a PTLS Dad) wanted to Talk to Me further about Travel, History, Geography, and Politics, Oh My! We had talked a lot about The Night before but, We decided to Continue with Where We left off Yesterday; Only Problem was that He had to leave in an Hour and 30 Minutes. Oh Boy! My PTLS “Brother”, Tyler would say! Luckily, I got to talk to Him and Show him My “Street View Log” Map. It was a Ton of Fun talking to Him about All My Favorite Subjects. After Several People left, We decided to go to Lunch at This Pizza place in Midtown Houston, it was pretty good. I will say though, that They have Very Large Pizzas (like what I mentioned before, Ha!). I had a Meatball Pizza, It was really good. On Our Way back, I figured that since We were in Houston and I knew that Houston has No-Zoning Laws (You can build Whatever, Wherever) There was a Guy who had a House that was dressed in Beer Cans. Yes, You heard that Right, Beer Cans! In Fact, They call it “The Beer Can House”, It was a pretty cool House! After that, We came back to The Hotel and Hung Out at The Hotel Pool, Of Course I got to spend more Time with My Friend and Her Mom. My Friend, by the way, was the one who wanted me to Hang Out in the First Place.  The Final Day, Saturday July 4th (The Fourth of July) I finally got to Sleep In a Little bit since I had to get up anywhere from 6:30 to 7 AM Most of The Conference and We would not go to Bed until 11:00 or Midnight. After We packed up, We went down and said Goodbye to Anyone Else who was Leaving. It went easy, that is until I had to Say Goodbye to My Friend and Her Mom. Her Mom hugged My Mom telling her “Thank You for Everything” and I thought in My Head and I said Out Loud, “No, Thank You Guys!” because They taught Me what The Future is like a few years down The Road.
So, Let Me be Real with You for a Minute here. Being The Head of PTLS, The Ambassador of PTLS is a Very Great Honor! I get to help PTLS Members see that There is hope for The Future, which I have NO Problem with at All, In Fact I am honored that I am The Future for Your PTLS Child. So, The Question becomes, What is The Future look like for Me? Now, Yes, My Mom talks to other PTLS Members about How scary The Future is for Me (From Her View) and The Fact that We really don’t know much about The Future, and Yet, We are The Leaders, The Hope, The Ambassadors of PTLS. I personally didn’t, really realize The Thought of that until I saw and heard all that My Friend has Done (which is Similar to Me, which maybe why we got along so well) It makes me Teary-Eyed just writing this, It is that much a Deal to Me (well..and, My Mom). Most of The Time, I just listen to My Mom talk about it and, I think “Oh, what’s The Big Deal, Mom? I got it handled!” as well as The Fact that PTLS Members are in Tears after They meet me but, I have never really understood that until Now. Of Course, When I envision My Personal Future, I see Myself meeting My Soulmate, Bridgett and Eventually Marrying Her, Living Our Life Together and All associated both Up and Down; That is what I tell you and I do believe Wholeheartedly but, In Terms of Support for My Future, I don’t have many others to show me what Direction sort of like a “Here Christian, Christian, Christian” kind of showing, similar to How I help PTLS Members that are Younger than I am, There is Not Much Support. It makes me Sad and A bit lonely because I’m the Driver in The Dark with My Headlights on as High as They can go and I don’t have Anyone showing me what is Ahead, I just drive along with PTLS Members following behind and Hope to God that a Deer doesn’t jump in The Middle of The Road. That has happened before at The Lake House that I grew up going to, but that is Another Story for Another Time. Call it Being Overwhelmed (which I am a Bit after The Conference), Maybe being Tired, I don’t know, but that is How I feel about that. In All Honesty, I Love Supporting You PTLS Family Members, I don’t want you to feel Bad because of Not Supporting Me but, that is because You are on Your Own Journey, and Yes, Don’t Get Me Wrong, There are a Few PTLSers that are Older than I am, but Everyone has their own lives. and In My Friend’s Case, In Some Odd Way, She helped me and Showed Me that Yes, There is a Future out there for Me and Again, Yes, The Track that She is on, I don’t always agree with, but, I think Most of All it shows me that My Future that I am dreaming of, Is not just Dreams, It is a sort of Reality. I guess all I can say is that, It was all a Reverse Psychology. Normally, I help People and This Time, She helped me. Anyway guys, I really appreciate You Guys letting me be Real with You because I think it really helped me and In Turn, It will improve Myself to help you even better. All in all, It was a Great Conference! Okay, Scratch That! It was a Stunning, Brilliant (as They say in The UK) Conference. I truly Love All My PTLS Family!


Thanks for Reading The Christianville Spirit. Everyone has their own Track, Future, and Destiny to Follow. Sometimes, that is The Best Lesson to Learn. 






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