The Christianville Spirit: (TCS Series); What it's like Having PTLS-Rerun

The Christianville Spirit

The Spirit that Lifts Your Soul

July 30, 2014-TCS # 412

Hei, My Readers! This Time I am trying out a Norwegian Greeting. Norway is One of My Favorite Countries, We have alot of PTLS Members in Norway that I love, and We’ll call this, an Honor to My Friend, Monica Shevell (Shout-out!) because She is Experiencing Norway’s Beauty. If You are wondering how You say, Hei, You pronounce it, Hi-EE. So, Let’s get started with This Week’s Newsletter! This Week we are Continuing Our “Oldie Goldie” Series. Don’t Worry, New Newsletters will be Coming Back in a Few Weeks! So, without further a due, This is The Christianville Spirit Series, “Oldie Goldies.” For The 4th Installment of This Series, We hop in The Time Machine and Go back to November 28, 2012; Just before My Favorite Month of The Year, December. The Idea for This Newsletter came from a PTLS Member who wanted to know what it is like to Actually Have PTLS. So, This is My View of What It is like Having PTLS, Roll It Guys....

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.

Thanks for Reading The Christianville Spirit. Embrace your Uniqueness because We are all special in our own way.         

The Christianville Spirit: TCS Series; A Conversation about Anxiety (Rerun)

Me and My Mom riding in a Hot Air Balloon!

The Christianville Spirit

The Spirit that Lifts Your Soul

July 23, 2014-TCS # 411

Bonjour, My Readers! That means “Hello” in French, I thought that I would Begin with a Bit of a Twist, different from Normal. So, Let’s Get Started with The Next Installment of Our Series, Shall We?! Before I begin, as a Reminder to those who want to read More “Oldie Goldie”, Read further down or Select a Year between Now and 2006, and Find some Good Ones to Read. An Invite to explore Christianville is always open All Year Long, so Come Read and Check It Out! So, on with The Series, without further a due, This is The Christianville Spirit Series, “Oldie Goldies!” For The 3rd Installment of The “Oldie Goldie” Series, We go back to October 24, 2012, Just before My Brother’s 24th Birthday. On This Day in My Life, I had gotten home from The Dentist’s Office and I was wanting to share My Experience about My Anxiety. Anxiety, By the way, is Very Typical of PTLS Children (One trait, that if Given the Chance, I would take away; All others I would Leave) and Hopefully, This will help you handle it when It occurs. As They say in TV and Radio, Roll it Guys...

So, Last Thursday, My Mom and I had one of the best talks we’ve had in a while. However, as My Uncle Bruce would call it, “The context of it” wasn’t that fun and happening at the time it was happening. Now, don’t worry it’s not bad, I promise! You See, about 2 weeks ago, My Mom told me that I had a Dentist Appointment on Thursday, The 18th. She let me know so I would be prepared and not spring up on me like “Oh, by the way...We’re going to The Dentist today.” Now, the reason she told me is because having predictability is essential to us PTLSers because we don’t focus without it. Not only that but, the Anxiety increases as well. On the other hand, when I know about it, I obsess about it and I get anxious about it. So, usually when I’m told in advance, I get nervous and fret about it until the day of. Bottom line, I’m nervous the most the night before, the morning of, and when the event starts. So, that brings me to This Afternoon (it was Thursday when I wrote this). So, I was nervous as usual and we discovered that the appointment was an hour later than she thought, so we had time talk, but it also gave me more time to be worried. Here is how the talk began. You see, Everyone, don’t get me wrong, I LOVE having PTLS and I wouldn’t give it up for anything, Nothing! However, there are parts of the behaviors that I would love to get rid, that one being Anxiety and, that was one of the first thing I told My Mom. So, she was wondering if I sit during this extra hour of waiting, and do nothing, does it help with my Anxiety? Unfortunately, No. In fact it only makes it worse because I obsess about it even more, because I know, wether I sit still and Watch TV or check Facebook, whatever the event is, it is still going to happen. So, she suggested that we hop in the car, start driving toward the Dentist’s Office and keep moving. So, we started discussing, how I feel about my anxiety and methods on how I can get through it and how she could help me get through it. This ha always been something she wondered about if she handled me the right way when I was a Child. As far as the sitting still or delaying it, that only makes me frustrated because it just means the event in question is still in your face and it’s not going to move unless you go through it. So, then comes the question of “should I tell you about a week before or be like, Surprise! We’re doing This”(in this case, “You and I are going to The Dentist, right now.”) I told her that it would be a Defiance of Trust to me if she didn’t give me enough warning. Remember though that My Mom and I have a good relationship, I tell her what’s going on with me and she tells me some of the stuff going on with her. So, how would I tell the difference when someone says, “Let’s get in the Car”; does it mean that your going out to Dinner, to The Movies maybe, on a Drive (which I love to do), or going to The Doctor to get your blood drawn. So I told her, that I have to know about it because I need predictability and predictable outcomes. Now, It may make me nervous, physically sick to my stomach and fret to no end, but it’s better for me to know than be surprised with something like that. The only thing is that it is frustrating is to know I am going to get sick (which is very ugly, loud and embarrassing) to know that you can’t get around it. So, then the problem comes, when the event happens, what do you (the parents & Kids) do? Well, that’s the part that gets me emotionally confused (and it had me very emotional talking about). Whether you ease into it slowly or be outfront about it, just make me do it. When it comes to Doctors, Dentists, and Needles, the best thing is just do it, be direct, but with a gentle firmness that gets it over with quickly. Once I get through it, I am fine. Now, I know PTLS Parents are wondering, “But, I don’t want to force it on them!”. Well, the thing is, you don’t have to force but, you have to push a little bit. I mean, as I told My Mom, “If you didn’t push while I was worried and getting sick to my stomach, then I wouldn’t have given a Love Note to Ali and she wouldn’t have known that I liked her” Other examples, I would never have learned to swim, go down a slide, snow ski, or performed in the Second Grade play at School (all which I really liked and didn’t want to stop after I did it), go into the 4th grade Economic Fair (because they had “Gak” and the sight of this makes me throw up), I would have never went out on a date, Went to Homecoming, had a Girlfriend, had a job or I would have never even have met My PTLS “Sister” (yes, it’s been awhile since I mentioned her). Now, I know your also wondering about the whole dentist appointment thing went, well I have an easy Gag Reflex and I was afraid that I was going to gag when I had to open your mouth. I do not like peoples hands and dental things in my mouth, so when they do I gag and get sick. However, a positive note, I didn’t gag this time, because Julie (the Dental Hygienist) was very nice and talked me through it, they had a T.V. for me to watch CNN, as well as the fact that she was very pretty. So the appointment went fine. I should mention though that these anxieties lasts until the event starts happening and then I start to calm down and have a good time. Anyway, the bottom line here is that your child can do a long list of things, but sometimes though, we need a little loving push to get through the anxiety we have and we’ll get it done.

All in All, remember that it depends on what the event is will tell if the PTLSer will be anxious about it and be able to get through it, no matter how hard you push them, but try anyway. This is what My Mom did and it worked.  

Thanks for Reading The Christianville Spirit. Why do people eat Desserts when they are Stressed? Because Desserts is Stressed spelled backwards.      

The Christianville Spirit: TCS Series: This Ones for The Parents (Rerun)

The Christianville Spirit

The Spirit that Uplifts Your Soul

July 16, 2014-TCS # 410

So, My Readers, As I mentioned before, I really like reading Some of My Old Newsletters and I would Love to share them with You. So, I am going to Share some of My “Gold Newsletters” from The Past. So, We are going to Continue Our Trip down “Oldie Goldie Memory Lane”.  This is The 2nd Installment of The Christianville Spirit Series, “TCS’s Oldie Goldies”. So, Further a due, This is The Christianville Spirit Series, “TCS’s Oldie Goldies”! So, This Week, We take a trip back to July 25, 2012. At This Time in My Life, I was getting Excited for My Birthday in Atlanta, which turned out to be The 2nd Atlanta PTLS Gathering. By The Way, I do want to make it clear to My PTLS Family Members as well as Curious People, that a “PTLS Gathering” is sort of like a Family Reunion of The PTLS Family where as a Conference is Where we have The Doctors come in. Just thought I should note that in case of any Confusion. Anyway, This “Oldie Goldie” was written as a Tribute of The Parents of PTLS Kids because I love them so much. I Love You, PTLS Family Members! As They say in TV and Radio, Roll It...   

So, You Know, that old 90’s song, “This ones for The Girls?” Well, for this week’s Newsletter, I’m going to put a twist on that song via a tribute to the Parents of The PTLS Family. I’m calling it, “This ones for The Parents.” For a little reference, “This ones for The Girls” is more of song to empower women. Anyway, I owe all parents of PTLS Kids a huge thank you, for not only being  the wonderful you and raising kids at the same time. But, most of all, I want to Thank You for being willing to talk to me, learning about me, and getting answers to those questions that have been bugging you to ask about what It’s like to have PTLS. Now, on that subject, the funny thing about the questions that are running through your mind are probably you are thinking, anyway, that they must be the most absurd questions that would ever come out of your mouth. But, once you hear it come out, it’s huge relief and there is actually an answer to the question. The thing that the Parents of Every PTLS Child has is that They think that they’re the only ones that have to deal with whatever they’re child does, whether it’s hitting, gagging, not eating, mumbling and not talking..the list goes on. But, Believe it or not, after talking with My PTLS Sister for so long, I always thought I was the only one who did certain behaviors or felt a certain way. Now, having talking to someone that has PTLS, we find that when we compare notes, we are very similar. Now, of course, we all know that there are different Parents, different Parenting Styles, and come from different backgrounds. But, the major thing PTLS Parents have in common is their going through, roughly the same thing and shouldn’t feel alone. Bottom Line though, is that we all have our own lives and our own junk that we deal with everyday that, its awesome that on top of that, many appreciate the fact that I might be able to help answer questions and it’s awesome that they want to talk to me and get my opinion on different things. And, yes, some people like to test my knowledge on all the stuff I know and things I’ve done, and I like to share my knowledge, so ask away! Honestly, I’m honored that people take the time to talk with me about anything and I feel so loved by Everyone, it’s a great feeling. By The Way, on the day that you meet me, Please tell me who you are and where your from, before you jump into the “I know Everything about You and I feel like I know You” thing that most people do when they meet me in person. Then again, the first thing I said to Dr. Jen Arnold from The Little Couple was “I’m your biggest Fan!” so, believe me, I understand. All in all, though Thank You once again for meeting me and talking to me like I was your own, and most importantly, taking the time to get to know me. But, even more so your children are very blessed to have you as their parent who cares so much about them, try to learn everything about them, and are such strong, wonderful parents; I’m happy to know you all.

Thanks for Reading The Christianville Spirit. Be Empowered to be a PTLS Parent.     

The Christianville Spirit: TCS Series; My Legacy (Rerun)

Me and My #1 Fan, Lynne!

The Christianville Spirit

The Spirit that Uplifts Your Soul

July 9, 2014-TCS # 409

So, My Readers, I have Noticed Something and It has Occurred to Me that I have More Readers that I did when I started. The Sad Part is that, unless You go looking for Some of My “Gold Newsletters” from The Past, You would have to go far back to see all of them. You See, I have written many “Gold Newsletters” over The Years (all the way back to 2006) and A lot of New Readers that weren’t around at the Beginning, Missed Them. For My Veterans (those who around when I started), This will be a Good Refresher. It does feel good, at least for Me, to look back to a Certain Year and Wonder Where I was, What was Going on in My Life, and The Many Adventures that I had. So, I’m going to do a Series bringing up The Gold Newsletters from The Past, I’m calling The Series, “TCS’s Oldie Goldies”. So, without further, This is The Christianville Spirit Series, “TCS’s Oldie Goldies”. This “Oldie Goldie”, as I take on a Casey Kasem Voice, was written back on July 13, 2011. It is about an Epiphany I had about My Legacy. As They say in TV and Radio, Roll it... 

You know those Thought Provoking epiphanies that occur in Your Life. You Know, the ones that make you see the meaning of Life or more along, Your Life. Well, I had one a couple days ago and it was about My Legacy. You See, I’ve heard about these “meaning of life” or “What in the world is My Life about” kind of epiphanies, Rumors says that like Every big thing that happens, seems to occur in Your 20’s. Just like your 20’s, you tell your parents about anything and everything that’s every happened as well as anything that has ever bothered you. Anyway, This Epiphany came about because I was thinking some of My Family’s Legacies and Believe Me, the Smith Family has led many great legacies including My Grandma Honey helping teenage unwed mothers in Maine to her great work-ethic. Of course, the Legacy of The Smith Family can’t forget Popi, My Grandpa who was, to say the least, A Great Man. But, then I thought, “What in the world is My Legacy?” and God in my head spoke, “Your Legacy is to help The Families and to Inspire them”. Of Course, I knew what he was addressing. He was addressing My great PTLS Family and that I need to help them. Now, by “Help” I believe he means not necessarily Support them because That’s up My Mom. But, to Inspire Them. You Know, back when I was in Senior High School, My Friends and I would occasionally sit in this Garden area which was a little walk from the Cafeteria. Anyway, there was this Plaque that read “Friends will come and go, but good friends will leave a foot print on Your Heart that will last forever”. At that time, I sort of understood what it meant and I thought it was sweet. But, I didn’t really understand what it meant. Today, now thinking about it, I do. You See, In a way I’m leaving my print on Many Hearts of members of My PTLS Family and the truth is their doing the same to me. All in all here, We all have legacies that we are here to lead, as little or as big as they may be.

Thanks for reading The Christianville Spirit. Here’s a rare-double dose Inspiration. Find what Your Legacy is and lead it. The Second, is from the Plaque with a little twist of mine “Friends and/or Family will come and go. But, Good Friends and/or Family will leave a print that lasts forever.”

The Christianville Spirit: My Brother's View on Me- Rerun

This is Michael with His Chickens that He has at His House

The Christianville Spirit

The Spirit that Opens Your Eyes

July 2, 2014-TCS # 408

So, I decided to do a Little Blast from The Past Newsletter, For This Week’s Newsletter. This “Blast from The Past” Newsletter was written back on June 20, 2012. It is a Newsletter about a Question that PTLS Family Members always wonder about. How My Brother, Michael views Me and having PTLS. Now, Just to be clear, Michael is My Actual Brother (along with a Half-Brother and Half-Sister on My Dad’s Side). All other “Brothers” I mention about (Like Tyler) are because I take the term “PTLS Family” to a Literal Sense. So, without further a due, This is My Brother’s View on Me!

So, Now that I have written Last Week on My View of My Brother and you enjoyed it. Well, now your really going to enjoy this! It’s the long-awaited Newsletter on how My Brother views me. This idea has been in My Head for a while before I finally decided to do it. My Mom and PTLS Family Members had always wondered about My Brother how My Brother felt about me having Special Needs and Having PTLS(or dup.17p11.2, as it used to be called). The idea came when one of the PTLS Members suggested that I should do a Newsletter on My Brother and his view of it all. I mean, considering that I mention him a lot in My Newsletters, people start to wonder about him and how he deals with it. It took a while at first, getting the nerve to ask him to do this, and even the idea of what questions do I ask? Because first off, I didn’t know what to ask him or even more unnerving, what would he say? So, I sent out a post on Facebook to PTLS Members on what questions they want answered and/or curious about and I got quite a few responses about what they want to know. After reading a couple questions, I thought, “Man, these are deep questions” and “I’m not sure if I really want to know about it or not.” So, then came, “How do I do this? A talk? Dictation to My Mom? or an Interview?” Well, long story short, I asked My Brother about it and he said, “We’ll do an interview” and finally, after a while of asking him(because both he and I kept forgetting or it wasn’t the right time of day,) He sat down to answer the questions. He finished it yesterday and it’s ready to go. First, I want to thank him and let him know I appreciate his honesty and willingness to do this. So, Get Ready everyone cause here’s the interview. As a note: the Bolded Questions are from the PTLS Family and below it are Michael’s Responses. So, as they say in Television and Radio, Roll it...   

TCS: When you were about 10-13 years old, can you tell us as a sibling how you felt when your bother had an aggressive outburst? Did you truly understand what was going on with him?

 Michael: For as long as I have known him, which is practically my entire life, he has never had an aggressive outburst. For the most part if he ever got really upset he would get more emotional. He would work himself up and start crying. There would be the occasional times where he would raise his voice but nothing that could ever be put as an aggressive outburst. At that age I had already seen him do things like that before so I wasn’t to worried about it. I just figured that he was more sensitive to things then I was, I never really linked PTLS to his sensitivity. I also figured out by then he was extremely stubborn and if he didn’t want to do something, he would put up quite a fight. Which would also cause him to get upset.

  TCS: How did having a sibling with PTLS effect your life both good and things that were difficult?

 Michael: Well growing up, nobody knew what PTLS was including myself. I was told that my brother had special needs and I just took that as the literal sense. I never considered him special or different though. I treated him like my bother with no exceptions and restraints. Naturally I picked on him and gave him a hard time. The one thing that I did do growing up was take on the role of big brother. I looked out for him and tried to teach him things. Christian has also taught me a lot growing up with him. I learned from a young age that people in the world see things differently. There’s nothing wrong with looking at the world differently and having a sense of individuality. Everyone goes through highs and lows, it’s how you deal with the situation that makes the difference.

TCS: How do you deal with your peers asking questions about your brother?

 Michael: Honestly, when I was younger I can’t really remember to many people asking about him. I think the main reason was that he was always pretty friendly to everyone. No one really could tell just by meeting him that he had special needs. After a while of getting to know him or seeing him then they might ask questions. I’m always proud to tell them what’s up. I just tell them that he has this rare chromosome duplication and he was forth to be diagnosed with it. After that, some people keep questioning and are really interested others just move on to the next order of business, whatever that might be.

TCS: PTLS kids need a lot of attention/ extra help. Were you ever envious of this?

 Michael: Nope. If anything when I was younger I found it annoying and frustrating. Not that he was getting more attention then me or anything like that, it was just because I was ready to move on and progress while Christian was still trying to learn.

TCS: As a sibling was there a time say around preteen where you were embarrassed when you were out with the family?

 Michael: Not really.

TCS: What did your mom do to help you understand Christians PTLS?

 Michael: I think that the best thing for me was learning patients and acceptance. I was taught that not everyone learns the same way and each person is different. Some people require more training on particular topics. Really that advice goes for everyone and didn’t segregate my brother from other people. It didn’t hurt that my mom likes the medical field and could give me facts and explain information easier to me.

TCS: When did you realize Christian was different?

Michael: I don’t think there was really a point of epiphany where all of a sudden I knew he was different. Living with him and growing up together, you just kind of known as life. Its really the same as getting to know anyone else, you hang out with them enough you learn things about them. All it takes is some powers of observation.

TCS: Growing up, can you give some examples of things you showed him how to do/ taught him?

 Michael: Ha ha ha!!! When I was seventeen or so I let Christian drive my car down the neighborhood street. That was exciting to say the least!! I taught him how to play video games and things like that. To recall everything I taught him would take some time. I just try my best to show him and explain to him anything that he has questions about and would like to learn about. His memory is pretty freaky. He can recall all sorts of random stuff. If others put in the effort and energy to teach him, he can learn anything.

TCS: Do you feel any angst or nervousness about being Christian’s guardian later in life?

 Michael: I suppose so, it is kind of nerve racking. I’m not stressing out too much though. We get along great and for the most part he is pretty self-reliant. I am confident in my self and my abilities to overcome any obstacle that dares to stand in front of me. Ha ha ha! But for real, I have known about being his guardian for a long time now, so I’m mentally ready.   

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So, I hope all of this helped to answer your questions on Siblings and My Brother. It was quite surprising to hear some of these because I didn’t expect it. Well, you know, I guess it’s like they say, “You’ll Never Know Until You Ask”, simple as that. This whole interview turned out to be more fun than I thought it was going to be, but then again, I didn’t know. I mean, you know, how much someone loves you but, sometimes, every now and then, you might be curious as to how much that person loves you. As for me, I know that My Brother loves me and understands me, and I love him so much for that. All in all, I say it a lot, but I’ll say it again, My Brother, Michael, is Awesome!

Thanks for Reading The Christianville Spirit. Let the ones you Love in your life, know that you love them; Everyday.