The Christianville Spirit: Words for People with Special Needs

The Christianville Spirit

The Spirit that Makes You Wonder

July 26th, 2017-TCS # 554

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. So, After Writing This Newsletter for The Past 11 Years, Pretty much Everyday I see a Newsletter that I have written. Some of Them are Good, Some of Them are Brilliant, and A lot are Just Gold Newsletters that Make me say, “Oh! I remember that one! It was a Really Good or Gold Newsletter!” Sometimes, I share it on Facebook but, forget to Rerun It or Sometimes, It comes up and I remember just how Good it was. So, This Week, I am going to Re-run a Newsletter that I had written after The Previous PTLS Conference about Something that I had talked to My Young Adult PTLSers about as well as Some of The Doctors about it, Specifically Dr. Treadwell-Deering (Shout Out!) She is an Awesome Doctor! It is actually something that We should think about, It is about The Words we use for Someone with Special Needs. Something that really needs People’s Attention sometimes. Anyway, Without further a due, I talk about “The Words People use for Special Needs”!

This Newsletter was written on July 15th of 2015 (Refer to Newsletter 457)

 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 that People use. A Disability, Handicap, Mentally Retarded or The R-Word of All Variations, and Someone with Special Needs. I, as well as 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 who are 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! 

The Christianville Spirit: Turning 30 Soon

The Christianville Spirit

The Spirit that Makes You Wonder

July 19th, 2017-TCS # 553

Oi, My Readers! Oi, by the way is The Greeting for Hello in Portuguese spoken in both Portugal and Brazil. Although, For The Record, Portugal is The Original Portuguese. Anyway, I know it might to weird to think about Right Now, Especially after Recovering from The Conference, but I am going to be turning 30 Years Old in a Few Weeks.  Your Birthday is August 11th, which is like 3 Weeks Away, People would say. “Always be prepared!”, My Grandma Honey will tell you. As She has a Trait of Planning for Things Far in Advance. But, It is a Great Trait to have because again as My Grandma Honey will tell you. “You never Know!” “You don’t even Knoooow!”, My Brother would also say. I miss My Brother! Anyway, so What does Turning 30 Years Old mean to Me? Well, Turning a Big Age is always a Big Deal to Me whether it is 20, 30, “The Big 4-O”, or 50 “Over The Hill”, as I was taught in School. The First Thought that comes is that Most People should be Settled or Ready to Settle Down. Should be Married, even though The Average Marriage Age is getting higher as The Generations go on. It used to be 26.9 and It probably is about 30, Some say 36. But, For Me, that is too late! In Most of The Romantic Comedies that I watch, It is Lame to be single above 30, but perhaps that is More spoken on The Women’s Side than Man’s Side, but, I digress. In My Mind and In The Movies, People would say “Why do You want to be Tied Down, Settled, and Married?! There are so Many Adventures and Dumb Things to try before that!” Well, In My Head, I would believe that The Adventure begins when You get Married. For Me, after I get Married, Me and My Future Wife will go on a Ton of Adventures in My Favorite Thing to do, Travel. Yes, I plan to Travel all over The World, See Places, and Do what I do best, Study the Details of a Country. I have always wanted to ask a Middle Easterner about Their Point of View of The World, Ask a Thai Person why The Buddhists don’t like it if You point your Feet at Someone Else or at Buddha Himself, They are offended. I would love to know Why East Asians eat Dog (Although I’m not sure that I want to know the Answer to that!) , and Of Course, Feel The Excitement of crossing a Border in Europe (via The Schengen Agreement) and Not have to Stop, as I have said before Europe Fascinates Me! I would Love to see all The Pretty Mountains of The Alps in France, Switzerland, Austria, Slovenia, and Germany, Among Many Other Places. I Love to Travel and Research Things! I want to go out and Marvel at The Beauty of The World! This is My Greatest Gift I would ask for because I don’t speak The Love Language of Traditional Gifts. Time to fill me up a Travel Account and see the World! 

So, What else makes me Think of Being 30? To be Honest, When I first heard of Someone being 30, It was PTLSer Stacy at The First PTLS Conference. At the Time, without offending Stacy herself, I thought “Man, 30 is Old! You must be Married, Have a Job, and (At least at that time) Have Kids”. In a Way, I still think that of 30 Years Old. You must be Married, Have a Job (like 9 to 5 Job), and Have Kids, or at least Start having Kids. Perhaps that is what My Old-Fashioned-Romantic- Comedy-Watching-Mind is saying that.  I don’t see Myself as being almost 30, I kind of Struggle with it (I guess Grandma Honey was right, “Always Be Prepared!”) because I feel like I am functioning as a 20 Year Old. With PTLS, We tend to function at about half our actual age so With that said, I delete Ten Years from My Actual Age to get My “Functional Age”. So, I guess Strippers and Lots of Beers is NOT going to happen! All in all, What are Your Thought on Turning 30?

Thanks for Reading The Christianville Spirit. Birthdays are Important! Celebrate Each One!

The Christianville Spirit: PTLS Conference 2017

The Christianville Spirit

The Spirit that Makes You Wonder

July 12th, 2017-TCS # 552

Howdy, My Readers! That is how Us Texans say Hello. Welcome Back as well! Now, We are back on a Normal Newsletter Writing Schedule. So, Question here. Where was I? I am sure that There were Some People that are used to My Every Wednesday Writings were wondering. 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 and I know, I said that Last Time We had a Conference but, I do mean it! Now, Okay, to Date, We have had 4 Conferences so far held in 2009, 2012, 2015, 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. Also, There was less People there this time around so It is a little 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. On Top of that, Apparently, The Hotel was doing Final Renovating Construction and They were doing The Escalators while We were there, so It got Loud a few Times from The Construction. So, In a Way, It was Good that We did not have as Many People. The Kids had some Really fun activities, Arts and Crafts and Food! But For me, It was fun to have others who Are older Teens and Adults to talk With. Call It a New Fascination, but It amazes me just how Far People come for The PTLS Conference and Rightfully so! They want to find out about Information about PTLS, that They have either Never Learned before or Want or Need to Hear it again. PTLS Family Members came from The United Kingdom, Therapists from Norway, and Most Fascinating and  Farthest Away, New Zealand. Yes, You read that, Right. A PTLS Family Member came all the way from New Zealand! Last Time it was a Family from Australia! Thank You for Coming, if You are reading this. This Conference was also special because My PTLS “Brother”, Tyler came This Year. He was going to come Last Conference but, Could not. But, that is Okay. I was glad to hang out with Him. It was Tyler and I, plus another PTLSer that was near Our Age, Harry from Kansas. The Only other PTLSer that was nearest to Our Age was McKenna from California. One of The Older Women, Stacy, could not come This Year due to  a Family Emergency. I was a little disappointed about that. 

Of Course, We can’t forget to Mention The Number 1 Fan of PTLS, Faith (not to be confused with My Newsletter Number 1 Fan), It felt Very Weird without Faith there, But she watched over us from Heaven. It will Never be The Same. We dedicate The Conference in Her Memory!

But, We did have a Great Conference! This Time, We drove down on The Fourth of July to set up and Met The PTLS Members, as well as a Very Nice PTLS Family Member from Connecticut that We went to a Cool Italian Place with for Dinner (It was a Quaint Restaurant built in a House) and Watched The Fireworks with. It was Pretty Awesome that I got to not only See Fireworks in Another City but, I also got to Watch Them with PTLS Family Members, Laura and Family and more who joined us after dinner! Talk about a Highlight for The Year! Now, Yes, The Fireworks themselves were Okay compared to Chicago or New York respectively, but It did not matter to Me. 

The Next Day, My Mom and I greeted PTLS Family Members including Tyler and My PTLS “Little Sister” McKenna, who was as Excited to meet me, as I was to Meet Her. We bonded Instantly! I took a Long Walk with a PTLS Member for The UK and Had a Nice Chat about Everything.

After a while of Greeting, I started to get a little Overwhelmed and SueVa and Marvin (The PTLS Members I went on a Cruise with) asked if I wanted to go get a Late Lunch. I thought that There was a Thai Place down the way from The Hotel. Eventually, after some convincing Tyler and I with SueVa and Marvin went off to find Thai Food. When We found it, It was in a Cafeteria and It was Closed. So, We went to another Cafeteria and Ate There. I actually tried Crunchy Crab Sushi. Yes, Marvin’s “Rare Finds” Zen (Refer to “Cruise of a Lifetime” Newsletter) rubbed off on Me! After that, We walked back to Hotel. That Evening, We had a Packet Pick-up and Reception for Everyone coming in. 

On Conference Day, Tyler, Harry, and I helped “Man The Table” and made sure Everything was going okay. We wanted to have McKenna sit with Us, but She went into The Childcare Room for a while to do some arts and crafts. But, She did do Something that I was very proud of Her for. You See, for The Second Time, I actually spoke publicly. Yes, I actually spoke at The Conference. Midway through My Speech, I thought It would be a Good Idea to let My PTLSer Friends speak for a Second. But, I got Harry and McKenna to do it. McKenna was Nice enough to come up and speak for a Minute or two. I am Very Proud of Her and She Spoke Very Clearly. No problems with her speech. During My Talk, I had a Few People in Tears while I finished and I was really honored when Dr. Lupski referenced Me and things I said in My Talk during His Talk.

Then, I went back to The Table to do My Job. It was actually fun to sit there and Hang Out with My PTLS Friends. It was Quiet (Except the occasional Construction Noise), but not too Quiet, It was either too Quiet in The Conference Room or Too Noisy in The Childcare Room (which McKenna learned The Hard Way). Before The Conference Day was Over, Us PTLS Guys had some Male Bonding Time while on Errands to help get ready for The Dinner that We were going to have. We passed The Stadium where The Super Bowl was played and Tyler was Fascinated by it! We stopped and took a few pictures before getting back to The Hotel. After that, We went to The Dinner for All The People from The Conference.

The Next Day was The Break-Out Sessions, 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 Overwhelming if Their Family takes them to Disney World. YES!! We All agreed to That One!

 After a Little bit of Rest on Everyone’s Part. There were Less People than the last conference, which was good, but still Very Overwhelming for Us PTLSers!

That Night, I talked with both McKenna’s Family and The PTLS Members from New Zealand. The Best of Both Worlds! That was when I learned that McKenna’s Grandma likes Geography as well as Her. Best of all though, I feel that It inspired everyone  just watching the two if us talk and laugh. The Next Day, It was The End of The Conference and We drove Home. Many People told Me or My Mom how much it Helped Them. My Mom and I are Humbled by the Nice Things People said about Us. Oh! and Dr. Lupski made sure mention My Newsletter and Make Sure His Picture is in it! So, A shout out to Dr. Lupski! But, The Fun did not stop there, because My Mom and I continued The Fun with McKenna and Family in Fort Worth. All in all, I hope Everyone who came to The Conference learned what They needed and Had a Great Time!

Thanks for Reading The Christianville Spirit. Like I said in My Talk, “Don’t Limit us! There is so much that We can do! Just because We had a Diagnosis, that Not who We are! Treat us like Normal!”