November 28, 2012

The Christianville Spirit: What's it's like having PTLS


The Christianville Spirit
The Spirit that Opens Your Eyes
November 28, 2012-TCS # 327

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.         

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