Tuesday, December 31, 2013

Life with Disabilites

       Today I wanted to let you into my world with disabilities and what each day can bring my way.  Being a single, empty nester, with OCD (obsessive compulsive disorder and a germaphobic (not sure that's even a word) makes each waking day different. The fact that I am so creative and being that creativity feeds my soul, also makes my days spontaneous and confusing. I often refer to myself as being much like Howie Mandel, the comedian, on America's Got Talent. Pretty much the same age I can understand when he speaks of keeping it private until the World became more receptive to individual issues, more open to speaking and understanding the quirks we often keep behind close doors. It's easier to speak without feeling like there is an elephant in the room, and your it, with everyone starring, thinking what is with them and there mental issues or weirdness. The silence is often the hardest part of being different.

        With that said and times being different it's nice to be able to speak of these things instead of trying to hide the issue as best as one can. I spent my life beginning at age 16 knowing I was different, that what I was doing, no one else around me seemed to be doing the same. At least I didn't notice, I suppose mostly because I spent a majority of my time everyday, trying to do what my OCD needed without letting others know, and believe me it wasn't easy. Try writing a paper in English Class as a high school student and having to start over 3 times, and trying to do it without anyone noticing, for me, that's my number 3 and occasionally a 4 will pop in out of nowhere. Often getting out of bed is difficult, just the same the counting continues, moving the covers back and over my body 3 to 4 times. The hardest part are the days the OCD decides to consume me, extremely stress filled ones, can make my day nearly debilitating, exhausting, and all I can do is cope the best I can, always keeping in mind, there is a new day ahead.

         I may or may not wash my hands 3 times at one washing, maybe walk in and out of a room 3 times, and when it comes to creating...whee! that can be just as distracting. Starting a project 3 times can often be exhausting to the point I will have to sit and do nothing...which often can even be worse. Sitting still for me without something in hand to work on is not good, my creative soul, it says oh no, we are creating. It's often a catch 22 there is no win and that's when it really gets tough, and even crazy. Wow, crazy, I always hated that word, even the word mental, and odd, didn't sit well because that's how some of us look to the world. And words that often become audio if someone discovers our disabilities, can be debilitating making alone seem so much better than the world outside. It's how I became to focus on words, study words, appreciate the usage, and there effect on us as humans.

        For me it's always been the word, your mental, that people used to hit my inner core and shatter my heart, because they didn't view me as human, simply odd. Sadly though we feel everything the same it's simply our genetics, the way we are wired that is different and that says odd to most people. Even though we are so incredibly open in this world today, we seem to have lost or are losing our compassion and understanding. It's somewhat like being racist, slavery is long gone there are inter- racial marriages, yet racism still remains almost just as strong in some ways, as it did when I was young in the sixties. We seem to be moving forward with the world, yet, are thinking hasn't come anywhere near catching up to the openness this new world allows. In many ways we still think very primitive, non accepting, and so opinionated, without processing first. Trying to imagine ourselves in another's shoes.

          Having twins with Down Syndrome, was devastating, the thought that I had brought special needs children in this world of openness, yet lacking the understanding and acceptance totally. Much like Julie, an amazingly talented worker of yarns, not to mention her daily tasks with a special needs child, who owns the blog Little Cotton Rabbits  who's son Toby, has autism, it's easy to relate to Julie as most Down Syndrome children suffer with autism as do mine. It's time consuming and exhausting especially as they age, with a majority of handicap children they are not as appealing to others as they mature, unlike the infant and toddler stages. I too can remember at night, trying to keep them quite so not to disturb the rest of the house as they slept, that alone is a task in itself. When my twins were born my heart broke, I would have given my life to change it, make them normal especially in appearance to cause less starring. My heart ached I was so angry inside for them for the first three years of there life, knowing  the words would fly and those dreaded stares I knew would begin and worsen with age. Especially when I had a bit of experience myself.

Say hello to my special need guys!

                                           
          Todd Michael - born 5 minutes before - Taylor Ray
        They are not identical just the absolute loves of my life.
       
          But as preemies of 2 lbs.each, tended to slow there growth over those years, and in that I learned something very valuable, no matter how people starred, or how often I was approached, sadly with people saying things like, ah, are they twins, yes I'd respond, then it would be ah, I am so sorry, honey you know, God gave you them for a reason. Standing there in my mind I'd think, yeah, okay, sure, he put them down here as they are, to teach me something, like I was so special compared to any other mother. I'd find myself thinking what kind of God would do such a horrible thing at the expense of a child, and especially two.

         Well, as they grew, I grew, I began to notice things daily and with that came the understanding of it all, the blessings that made up for the exhausting times. The constant smiles, the freedom to do and act as they were diagnosed, with such incredible happiness and lack of fear, of the audio words, the stares, anything the world could throw at them didn't matter, that smile found it's way to there face and my heart. Sure they had there little ways that Down Syndrome and autism would bring, yet it was there world, and it belonged to them, to be and act as they were and are in life. That's when I realized just because I was of the human race that could process thoughts, appeared visually normal, voice opinions, use those audio words, I didn't have too, nor did I have to process them anymore, when thrown my way.

               As far as my twins I don't believe we are given disabilities, no matter how extreme they may or may be, or given children born with disabilities because we are special people. I believe in God's eyes we are all special, and what comes with us from birth or along the road, those obstacles, those oddities, and difference are meant to teach us all, what God has always wanted and expected of us. To take those obstacles do the best we can, learn from them as we go and make this place we call Earth the best place, a peaceful excepting place, filled with unconditionally love, understanding, and total acceptance. After all it's said, God does not give us more than we can handle, to just give our utmost best, we just ask that he carries us along the way, with each obstacle until we figure it out. And when we do, share whatever knowledge we gain with others, to make a more understanding, excepting and compassionate world.

          The years the twins were in my life daily, they taught me a lifetime of compassion, understanding, and love for all humans, unconditionally. That is was okay for me to count to 3, and wash my groceries after bringing them home, or spraying them with Lysol. That's my germaphobic side which heightens in the winter, as I hibernate each season which isn't always easy. In fact, it's rather lonely, despite it all, it's okay to do what I have to, because that's who I am.  Knowing it makes it easier to say it to myself and out loud, Yes, I am different, just like we are all different, and yes, mine may show sometimes and I now speak of my days more openly...I'm okay, because I am uniquely me. Without it, sure life would be easier, but easier doesn't teach us about ourselves, about life, or other people. It doesn't educate us on how much we differ from others, or teach other what it means, that although we are different...we feel, we hurt, we cry, we laugh, we scream, we dream, we hope, and we love just as anyone else, despite the fact we may look different or do things oddly. We are of the human species just like everyone else.

          So I will continue my days even though some are tougher than others, yet I will do so on my terms, ignoring the audio words, always at my pace, and with a smile, knowing I am not a problem, those who use audio words, constant stares, and often bullying are the problem, with much to learn from people like us, with disabilities. Get to know us, speak to us, say hello, ask us about our day. We are not as frightening as you may think, we need people, we need to be heard, excepted unconditionally. And listen closely when we want or need to talk if times are tough, you will make a difference, and you may just save or change a life.
   
        With all that said, Hi, I am Pamela, it's nice to meet you. I have OCD, I am a Germaphobic, and say it proudly,  yet they do not define my life, or who I am. They are merely my obstacles in this life. Although I take medication for my OCD, I live my life surrounded by positive visual words I can see everyday, whether on my walls, my fridge, or maybe just on a piece of paper in front of me. They are there to remind me, I am just as much worth living a good life, the best I possibly can, like anyone else, with hopes, dreams, the desire to do things maybe great things, to have friends who truly understand, yet better we want what anyone else does, to love and be loved in return, totally for who we are, and always unconditionally.

Speak of me, but if you don't know me, say nothing at all, for silence is better then audio words of something which you don't understand, until you get to know me. For then you will find, I too, despite my differences, am like anyone else, desire to simply be treated as human. Author, Pamela T.


Happy New Year, dear readers...
My wish for all in 2014
 acceptance, compassion, love surround you everyday,
 and bring you many blessings.