March 27, 2013

The Christianville Spirit: Old Friends

The Christianville Spirit
The Spirit that Fills Your Heart & Lifts You Up
March 27, 2013-TCS #344

So, For Those of you that have been following My Newsletter for a while would know that I cherish all the fun that I had in My Childhood. So, This story that I’m going to write will be no different. You See, I consider myself very lucky to live the Childhood that I did, here in Plano, let alone anywhere in the country. Anyway, to summarize for those who don’t know, I had grown up together with the kids (Known as “The Barsi’s”). We lived on a cul-de-sac, the backyard had a creek, we also had a Trampoline, and we could run through 4 Yards without ever running into a fence. We lived next door to a family of Girls who we know as “The Herrick Girls.” So, One of the Herricks posted something that reminded me of our childhood and how fun it was. I thought, “Maybe we should have a reunion some time!” After that, I reconnected with some of My “Long-Time Friends” as I refer to them as, on Facebook. Again, it does make me very Thankful for things like Facebook. Funny Enough, In our childhood, there was no such thing as Social Media (i.e.: Myspace or Facebook) or such things as IPads & IPhones, Oh The Horror! Actually, This was part of why I had such a good childhood because we had to play outside. Anyway, It was really nice to reunite with them on Facebook because we haven’t seen each other in person in at least 10 years. So, I got in contact with Alex, the youngest of the Barsis, and the other day he got to come over to our house to hang out. I’ll say that it was awesome to see him again. We got to talk about all the memories, fun, and good times we had and after My Brother got home, we got to play Nintendo 64 like we used to. We used to play it a lot but, only the times when we couldn’t go outside like if it was raining or too hot. I mean, most of the time, we were Outside, climbing trees, going down in the creek, building dams in the creeks, bike rides, jumping on The Trampoline, and running around. Basically, we had to have a good reason to play inside when it was a pretty day outside. Every Summer, we would spend every weekend to the Lake House out in the country. It would be sort of an Inside Joke between us to say that being outside in those days was our “Social Network.” As I look back on it now, If I had lived on a straight-lined street and fenced in neighborhood, I would have been bored to tears. So, reconnecting with Childhood Friends is something that I love to do and plan to do more of, these friends mean a lot to me because they always accepted me for who I am. Thanks Friends! All in All, Having Special Needs didn’t matter to this group of kids and That’s why they are so important to Me.

Thanks for Reading The Christianville Spirit. The Spirit that Fills You with Friends.

1001 Great Ideas for Teaching and Raising Children with Autism or Asperger's, Revised and Expanded 2nd Edition

March 20, 2013

The Christianville Spirit: Humming and Singing

The Christianville Spirit
The Spirit that Fills Your Heart & Lifts You Up
March 20, 2013-TCS #343

So, Ever since I was younger, I would do something that people would think was either annoying, weird, and peculiar. I would Hum a lot or at least it came out as Humming. You See, Even when I was of childhood age, I would hum but, to my ears, it would come out as lyrics to a song I liked. To others’ ears, it came out as a steady hum. Sometimes, My Humming helped because unknown to me until I was older, it would help put My Brother to sleep. I hummed for many reasons and I had different types. One type of humming was because I was picturing driving down the highway and imitating the sounds of the road. I still do that, but only when I’m Cyber-traveling and I know or guess what the road sounds like. Then, the other type of humming occurs when I’m happy or when I’m Anxious. It was also thought, at least in my point of view, that I wasn’t humming and I had a look on My Face then, I was not happy. Throughout The Years, I had many songs that I would sing like “The River” by George Strait, “All For You” by Janet Jackson, “Boot Scoot Boogie” by Brooks and Dunn, and My all-time favorite, “Run River Run” by Loggins & Messina. Some of the Songs I sung I liked just because of the noise that instruments made or rhythm of the song. A more recent time, I hummed a song that was more appropriate for the situation. You See, I have a big Anxiety about Needles (I mean, who doesn’t?) Anything that has to do with it like Shots, Blood Drawings, and IVs. So, Last Year, I had an Upper GI which led to learning about My Acid Reflux and Slow Stomach Emptying so, while I sat in the Waiting Room, which is one the most anxious parts, besides the preparation of the needle. To help me with My Anxiety I hummed (in my ears, sung) “Edge of Glory” by Lady Gaga. When I was in school, If nothing was happening or I was doing my work, I would hum to entertain myself while I was working. Sometimes, People would tell me, “Christian, Stop Humming!” and I’d either say, “Okay” and then, I would keep singing or I would say something along the lines of, “I hum when I’m happy!”. Then, they would say, “Then, Stop being Happy!” I hum many different songs at different times, I find that currently I hum more Country Songs and some Pop Songs. One Song, I’ve hummed many times, “Haven’t Met You Yet” by Michael Buble and I could sing all the lyrics to the song. I use to sing, “You and I” by Lady Gaga a lot. (He-he, another Lady Gaga song). I like singing “Independence Day” by Martina McBride (I’m a Patriotic Person), “I Saw The Light” by Wynonna Judd (because I like the beginning of it), and “Goodbye Earl” by Dixie Chicks (Dixie Chicks have good songs). So, Certain Songs and Sounds around me (like The Road) soothes My Soul, Eases My Nerves, and Makes Me Happy. I hummed, long before I could talk. My Mom used to tell the doctor that I made sounds like whales singing to each other, all my waking hours. So, all in all, as in the words of My Theme Song, “Life is a Highway.” What’s Your Theme Song?

Thanks for Reading The Christianville Spirit. Let Music and Sounds fill your soul.   

March 13, 2013

The Christianville Spirit: My Love for PTLS

The Christianville Spirit
The Spirit that Fills Your Heart & Lifts You Up
March 13, 2013-TCS # 342

So, For This Week’s Newsletter is going to be a very special one because of the Awesome Week that I’ve had. You See, as I mentioned in Last Week’s Newsletter, I had mentioned a blip about the Day of Naming of Potocki-Lupski Syndrome or what I’ll now call “PTLS Day.” So, on the evening of PTLS Day, I wondered about it and more importantly, I thought, Why do We Celebrate PTLS Day? It got me thinking that Our World wouldn’t be the same if there was No PTLS and I was a Normal Guy. It makes me realize how much something that I’ve lived with My Whole Life, could mean so much to Me. Now, I’ll tell you, that Having PTLS isn’t always easy and Yes, There are parts of it that I would love to press a Delete Button on, namely My Headaches & Anxiety, but I still love having PTLS because it makes me..Me. It makes me Unique and Makes me feel Special. So, Back to that question, “Why do We Celebrate PTLS Day?”. I can’t resist, I have to use the words of Bon Jovi, “Because We Can!”. But, other than that, Because it promotes Understanding. It feels really good to know there are people out there who behave in a very similar way that I do or In funny cases, The Behaviors I did when I was younger, when I was their age. I always like to Point Out that I also have Many PTLS Family Members around The World that I consider to be part of My Family, whether they have titles like Aunts, Uncles, Brothers, Sisters (You know what I mean) or not. They are all part of My Family, My very Large, Unique, and Across The Globe, Worldly Family. Most People would ask, “Why are these so called strangers, Your Family?” Because, I have more in common with These “Strangers” than I do with My blood Family or even, Friends. Although, Friends, You are important to me too but, that’s not the point. I have to say, I am honored that Dr. Potocki(known in The PTLS Union as “Queen Potocki”) and Dr. Lupski (PTLS Union Name: “King Lupski”) that they would even put their names on this. It’s an honor to have their names and to know them personally. And, Finally, The Understanding. I Believe all of us PTLS Family Members understand each other because we (both Parents & PTLSers) don’t feel so alone. Because if it weren’t for knowing about PTLSers around The World, I would feel alone because there would be No One that I could relate to in the way I do things, The Way I Talk, and The Different Behaviors that I do. So, it makes feel good to be part of this community. All in all, The PTLS Foundation could use your support to help make sure that No One else feels alone.

Thanks for Reading The Christianville Spirit. Embrace Your Differences and Cherish Who You Are.

March 6, 2013

The Christianville Spirit: The Naming of PTLS Remix

The Christianville Spirit
The Spirit that Fills Your Heart & Lifts You Up
March 6, 2013-TCS # 341

So, Every now and then, I like to look through My Records of printed old newsletters, most of the time to see what was going on in My Life at that particular time. So, Around late February and Early March, I always try to remember when PTLS was named. Every Time I look back, I go to the first mention of it, which was a Newsletter written on March 8, 2007. The funny thing is that From My Memory, I can tell you about how I found out about it’s naming. Before it was named, I just addressed it as “A Duplication of Chromosome 17,” even though I didn’t know what a “Chromosome” was or really, how to explain what I had. But, I remember how I was told about “Duplication of Chromosome 17” becoming “Potocki-Lupski Syndrome(PTLS).” Here is how it went, I remember that My Mom picked me up from School (this was in Senior High School, by the way) and after we pulled out onto the street and started driving home, My Mom told me, “Hey, Guess What?” and I said, “What?”. My Mom continues, “So, I got an email from Houston, Dr. Potocki, and Your Syndrome..has been named Potocki-Lupski Syndrome. It’s was named after Dr. Potocki & Dr. Lupski, Isn’t that exciting?!?” At that time, I was little bit excited but, I had a little trouble understanding it because I didn’t know if it had been named before. It took a while for me to process and understand, but I did get excited about it. After I learned about the name, I wanted to tell everyone and share in the celebration. Now that PTLS has been named, I mention it with much better ease than I did before because People know more about What I’m Talking About. Also, It’s given me PTLS Family Members (formally known as just “The Families”) around The World. As a Result, for now, We’re calling March, PTLS Awareness Month which is great because it coincides with Autism Awareness Month and Spread The Word To End The Word Day (or STW Day, for short) which is Today actually. All in all, though The naming of PTLS is just as special as having PTLS.

Thanks for Reading The Christianville Spirit. Celebrate Every Day that You Wake To.     

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