Humbled and Honored

Another Blogger has honored me today. This is one of the blogs I follow, as Roy is a very cool guy and gives the world wonderful insights and delightful slices of his life every day. I just wish I was as good a blogger as he is.
http://royd-spiltmilk.blogspot.com/2011/11/pick-on-me-tuesday-11-22.html

So, those who follow me are urged to check out Roy's Blog. Yes, he has honored me today, but I think you will find interesting tidbits there most days!
Peace and Blessings,

'Tis the Season

Does it seem as if all of a sudden every where you turn you are encountering rude behavior? If so, believe me you are not the only one. I think it is just a stressful time of year. We have entered the 'holiday' season. Since time began, humans have had celebrations during the winter season, and for good reason. When the winter is upon us, we sometimes need to be reminded that it will not always be dark and the light will return.

So here we are, just a few days from Thanksgiving, and we are already starting to see people running around getting stressed out and being rude and unkind to each other. It is not easy to remain calm when someone is rude, but if we are to reclaim civility and peace for our society, we have to start by reclaiming it in our own lives.

The holidays are hard for us sometimes, in that the reality often doesn't match up with our expectations. We want so much to create either the holidays of our memory or the holidays of Norman Rockwell's imagination. For those of us who don't have halcyon memories to draw on, we think we will make up for it by making sure our loved ones do. For those of us with great memories we compete with trying to accomplish all of those things in a different time. And so we are worn out, frazzled, frustrated.

I think the first place to start to reclaim some peace and tranquility at this time of year is to acknowledge that the Norman Rockwell holiday was a figment of Rockwell's imagination. I love Rockwell's work, but honestly those illustrations were just that- illustrations. Yes, I am sure that there are families and celebrations that look like that, but I am also sure that there are families that don't. So I think we have to allow ourselves to relax and to create what works for us. No more 'keeping up with the Joneses'!

Now my maiden name was Jones, so I have always found the thought of 'keeping up with the Joneses' absurd. Believe me, we weren't worth keeping up with. Holiday dinners at our house were fraught with difficulty.When all of the siblings and their families got together there were bound to be arguments, fights, and just general mayhem. I don't remember a time when everyone was speaking to each other, there was always some point of contention somewhere. One of the memories I laugh at was the year Thanksgiving dinner was at the home of one of my brothers instead of my parents. That brothers wife did not care for me (her loss) and she very cleverly made that known! I happen to have food allergies,in particular coconut and walnuts. On that table there was not one dish that did not include coconut or walnuts. NOT ONE! From the salads to the stuffing to the gravy, some form of coconut or walnut had been included in every recipe. Then she whined because I excused myself from the table without eating anything. My brother yelled at me that I was disrespecting his wife, and as I left the room my family started arguing. Just another family gathering at the Joneses!

So, as we start the countdown to the end of the year, my advice is to relax. All you can do is all you can do. Perhaps it is time to simplify anyway. As we encounter rude people who are stressing out, smile, perhaps say a little prayer that they will be blessed, and remain calm. That guy that just cut you off on the freeway, ask God to bless his life and keep him safe. That cranky neighbor, ask God to pour out blessing on her. That frazzled cashier, thank her for working hard and wish her a blessed day. Whatever you do, do not repay rudeness with rudeness. You only make yourself unhappy when you do that, and the truth is rude people are unhappy people, no need to add to their numbers.

Perhaps remind yourself of the first few lines of the prose poem Desiderata (Latin for desired things)

"Go placidly amid the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story. Avoid loud and aggressive persons, they are vexations to the spirit..."

Who knows, perhaps we can reclaim good manners and civility in our time, and if not we can certainly reclaim it for our life!

Anger is on my mind!!

I don't often talk about current events or news. I try desperately to not talk about politics or religion. I have friends from across all spectrum from left to right, and fortunately we respect each other enough to agree to disagree. But I am going to make an exception today. Because there is a story in the news that has caused me, and others like me pain.

The child rape case involving Penn State is an horrific thing. When I read the first story in the newspaper I was immediately saddened and sent prayers for the young people who had been so betrayed. Then there were the stories about the fallout, an venerable old man losing his job, and then the riots. That is when I started having trouble sleeping.

See, like an estimated 1 in 4 girls and 1 in 6 boys in this country I am a survivor of sexual abuse, child rape.Now, I am 57 years old, and have had much therapy over the years, and truthfully think of myself as having healed from the memories of being raped as a vulnerable 4 year old.But, as I read the paper, and the rapes of a 10 year old child were described in much more graphic terms than I had expected, it seems to have triggered a bit of PTSD, Post Traumatic Stress Syndrome. I was actually surprised at how deeply the newspaper story had affected me.

Maybe it's not just me, maybe there are others out there that are also feeling the pain, and the anger. Honestly, how could this be happening in this day and age. How can we still be a society that allows our children to be raped? I know that 50+ years ago things were not spoken, but I have seen in my lifetime increased awareness, increased information, or so I thought. Apparently we haven't progressed as much as we think we have.

I am not even sure why I started this post, maybe I just want to say to all of us that it is past time for us to speak up, stand up, and make this world safer for our children. I can honestly say I have called Children Services and reported things in the past and will not hesitate to do so again.When I was working, I have intervened in situations where I saw children unsafe, and would do so again. Had I witnessed the rape of that child in a shower,the police would have shown up as  they would have had to pry my hands from around the perpetrators neck.

Maybe I just started this post just remind myself that we need to make ourselves available to to protect our children, all of our children. As a child I knew that what happened to me was wrong.Then when I became a mother I knew that I would die to protect my child. I will never forget the moment my son was put in my arms for the very first time. I knew, in that moment, that love existed, and that every child deserves the best we have to give.I have always made sure I listened to him, and I fouhgt for him when I had to, I would do the same for any child, anywhere.

In the words of Albert Einstein...

The world is a dangerous place to live; not because of the people who are evil, but because of the people who don't do anything about it.

Thanks for listening.


 
 

November is RSD/CRPS Awareness Month

Awareness months seem commonplace these days, and so it can be easy to ignore them. Then of course, something hits home with you in a personal way, and you feel the need to be part of the awareness. As the parent of a young man with autism, I have written about autism awareness. This month, I am writing as a person with RSD.

What is RSD/CRPS you ask? Well, according to the National Organization of Rare Disorders "Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome(CRPS), is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary functions of the body such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with reflex sympathetic dystrophy syndrome."

Now, this post is not to seek sympathy, but to increase awareness. So many live with what are sometimes called invisible diseases. It can be difficult for those who love us to come to terms with the fact that we are in pain. My late husband hated my pain more than me. He felt completely helpless, not an easy thing for a loving spouse to feel. The first few years-I experienced my first symptoms in 2001 on our honeymoon-I felt a lot of guilt. Yes, guilt. It isn't easy knowing that family times and plans depend on how Mom is feeling that day.

It took a year before I found the doctors I rely on. Rare disorders are like that. Most doctors have limited knowledge of the disorder and even less knowledge of how to deal with it. I was misdiagnosed by several doctors. Really unfortunate because if diagnosed early there is a chance to stop the progression. I was progressed into phase 3 of 4 before I found the right doctors.Still, I was not finished with unknowing medical professionals. After I found my wonderful neurologist, who not only knew what was wrong with me, but knew how to help me, I had to change my primary care  physician. The one I had been using quite simply looked at the diagnosis from the neurologist and told me there was no such thing as RSD and that I was imagining it.

Now RSD has been in the medical literature for 150 years. The name has changed through the years, in fact the name has changed since I developed it in 2001, but it has been written about since the Civil War. So, you can imagine how disheartening it was for a physician I trusted to look me in the eye and tell me I was imagining the most excruciating pain known to exist. He simply refused to continue treating me if I persisted in seeing my neurologist for treatment of the RSD. For me, this is underscores why  we need to have an RSD/CRPS awareness month.Even doctors need to be educated.

Twenty five years ago when I first started seeking answers for what was different about my son, it became obvious that educating people was going to be part of the equation. I had never met anyone dealing with autism, and so I found myself researching and studying so that I could educate family, friends, even the doctors and educators we were dealing with. Fast forward,and I am find the same need to educate when it comes to RSD. Luckily, we now have more avenues open to research, share information and connect with others doing the same thing. All too often when you are dealing with something you can feel isolated, as if you are the only person in the world who has to go through what you are going through. In this day of social networks and awareness months it is so good to know that there are others out there who understand.

While no two people have exactly the same experiences, it is always helpful to know that you are not alone. This disorder is not easy to live with. There is no cure, and as horrific as enduring the physical pain can be, the psychological and spiritual pain can be even worse. It is not easy being in pain, being treated badly by the medical establishment,misunderstood by friends and family, needing large doses of narcotics just to get through the day. It will wear you out. It isn't even easy to describe the pain you are feeling.OK, imagine that someone has set your nervous system on fire, is applying a cattle prod and attempting to shred the flesh from your bones with a giant meat fork, all at the same time. I told you it was hard to describe the pain that an RSD patient endures. NOW multiply what you imagine that might feel like by about 10,000.You might be getting an idea of the severity of the pain. Honestly, that is the best picture I can give you. Now imagine that the pain that is constant at about a 6-7 out of 10 can be spiked up to about a 12 out of 10 (I am not exaggerating) simply because the fabric of the skirt you are wearing was touched by a puff of wind. The pain colors every moment of your life. Every breath you take. Am I enjoying a sunset on my deck? What if the wind comes up, what if the fabric in this skirt is scratchy, what if I simply breathe deep and the pain flares? You have to think about these things,and learn to deal with them.

Of course, RSD is not the only disease/disorder that involves chronic pain, there are way too many. It just happens to be one of the diseases I have (it is the only one I talk a lot about, I won't bore you with the other 4). There are an estimated 5 million people worldwide suffering from RSD.The reason I talk about RSD is so that other people can be encouraged to talk about what they are dealing with. It is my small way of saying that you can learn to manage your pain, and perhaps even to manage to have a life in spite of it.

You can learn to manage the pain with medication, good doctors, and with the meditation and breathing that you use for so many things.For me Faith is so important in learning to manage something like this.Some days you might be stuck in poor pitiful me mode, but Creator will not leave you there. Most High will whisper to you that your next blog post should talk about the pain. So Spirit will nudge you to share your stories, share about the pain that is so integral to what is going on in your life.Share that I really do believe I have the choice to pray for healing, the choice to deal with the disease should healing not come. Life is all about choice. I choose faith in my Creator to overcome even the most painful disease known to man. What choices do you have today?

Halloween,oh my!!

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It was a beautiful sunrise here in the heartland. Because Daylight Savings time lasts longer this year I get an extra week of sunrise meditations. With the clock going back on Sunday, I may not get up early enough for sunrise for a while. I can't remember a Halloween with such nice weather. Usually it is cold and wet, a few years ago we got a huge snowstorm, still referred to as the October Surprise by weather forecasters around here. The trick or treaters will actually get to show off their costumes rather than hide them under winter coats this year. Halloween chills and thrills are fun for some, but for others it is simply the harbinger of a time of year fraught with difficulty. The holiday season draws nigh!!!! It is amazing isn't it how many emotions get stirred up in us as the holiday season draws near. There are those of us who had less than functional families growing up, and this time of year always seems to be a time when family dynamics can be trying at best, and downright dangerous in some instances. I remember the first Christmas stocking I ever had. I was a freshman in college, and in conversations with a new friend, it came out that we didn't have pleasant holidays in my family. I loved hearing the stories told by my friend Lizzie of the traditions of her family. Christmas stockings were important to her family, so much so that her stocking was being sent to her to hang in her dorm room before she took it home with her for Christmas. When the package came, there were two stockings. The one she had treasured all of her life, and a brand new one for me. As alien as the concept of loving family was to me, the concept of a non loving family was even more alien to her, and she had asked her family to make me a stocking. I visited her home several times over four years of college. Stopped off at her parents house a few times in my travels as an adult. I will always remember that they taught me about Christmas. So when I became a mother, I purposed in my heart to create traditions for my son. There was just the two of us for the first 12 years of his life, and we created wonderful traditions. Then I met my husband, and we  adapted some of our traditions into family traditions. We have pizza on Christmas Eve because I was too tired from working at the store to cook, so my son is in charge of Christmas Eve. He cooks the pizza and serves us. While I am at work he bakes 2 batches of cookies. One batch is a recipe he has baked every year since middle school, and then he combs the holiday magazines for a new recipe to try. Christmas morning my son opens presents, there usually aren't any for the 'grownups' we spend the money on my son. I fix biscuits and gravy for breakfast, and we go to the movies in the afternoon.We come home and have our dinner, ham and wild rice dressing. I am not sure how that came to be our tradition, but it has been since my son was small. Traditions can be created where there were none. Traditions can be changed when the original traditions no longer fit, traditions can be thrown out the window when they simply aren't good for us to continue them. We can choose to make healthier traditions. Do we usually cook too many things that are tempting? Try new recipes. Yes, stick to those one or tow things that you have to have, but honestly, we all cook things that no one will miss. Think about what goes into the fridge as leftovers. Maybe that's a dish that can be changed. Not only can we change the things we cook, but if there are issues that come up for us in this emotional time of year, we can change how we think about them. If there are expectations from others that aren't in our best interest, we can choose to not feel like we are letting someone down. Our well being is our concern, and we are not dishonoring anyone, or disrespecting anyone when we choose to honor our needs and respect our choices. Choose to take care of you! YOU are then better able to take care of the ones you love. Do something spectacular for yourself today, choose to not let the candy dishes take control. Choose to be in control of what you eat. Peace and Blessings, EstherBelle

Let's Go Racing!

Last weekend was a racing weekend. My son and I have season tickets at Kansas Speedway, and yes I have had people question whether that is a good use of our money. I usually answer that if I have to rob a bank, my son will have his Nascar tickets! It is a one of the no compromise parts of our budget. There are only a couple of people who the right to question, and they don't. Our entertainment dollars are budgeted for the Nascar tickets, and the return on investment is priceless.

Nascar is one of my son's sports interests, and it has been very good for his social skills. When we were at Crazy Horse Memorial he was able to have a conversation with a stranger once the subject of Nascar came up. When we go to the Speedway, the other season ticket holders that sit around us no longer notice the things that make him different. In fact, our arrival is eagerly anticipated and my son is warmly welcomed. Everyone is glad to see him.

One of the positive aspects of my son's autism is that when he becomes interested a sport or any other subject he studies it in depth. In fact, I would venture that very few people understand the rules of a sport he is interested in as well as he does. Now that I think about it, it may be a male thing more than an autistic thing. My late husband could give you infinite details about college football teams and players. My son can do the same thing about Nascar. He knows the rules, he knows who owns and  drives every car, he knows every detail of every drivers career. And he knows the rules. So, when we go to the races, the people around us don't see someone who is challenged, they see someone who is knowledgeable. They see someone who can answer any question about the sport, and they look forward to sharing that sport with him.

It is always a joy to go to the races with my son. It is always good for me to see him in a situation where he is admired. Now I personally think he is the most amazing person I have ever known. But, I admit that as his Mom I may be a tad biased, so it is always good for me to see him succeed in a social situation.

Races are a week long round of activities in our lives. There are show cars displayed around town and there are opportunities to meet your favorite driver. We take advantage of as many of these opportunities as we can. One of those opportunities this year was also what I call a divine appointment. Like the young woman I was able to share with at Mt. Rushmore, or the gentleman that talked to my son at Crazy Horse, an opportunity to be in the right place at the right time. We were standing in line at a local grocery store waiting to meet Clint Bowyer. I got in a conversation with the 2 people in front of us in line.

The conversation started off about Nascar. But was soon about something even more important. It turned out that the gentleman was the father of a 9 year old son, a son blessed with autism. As my son was able to hold a conversation with this man about the sport of Nascar, I could see that something even more important was happening. This father had never met an adult with autism, and he was soon sharing with me how important it was for him to be able to talk to my son. To be able to first see my son as a fellow Nascar fan before he saw him as a person with autism.

When we become parents, we dream dreams for our children. The first time you hold that child in your arms, you think of the future.As your child grows from a newborn to a baby to a toddler, you start to imagine what they might be when they grow up. When you start to figure out that there is something different about your child, and then perhaps when you receive a diagnosis you often have to let go of some of those dreams, but you are in uncharted territory, and you don't know what the future is going to look like. So often, we have no frame of reference because we have never met anyone who has faced similar challenges. Standing in line that day, this father met an autistic young man. A young man who was knowledgeable and interesting, and for the first time in a long time this father could imagine a future for his son.

I think that is a great return for our Nascar dollars, don't you? Makes me a very proud Nascar MOM!

Social skills?

Our neighborhood had it's fall picnic over the weekend. Unlike the weekend before, the weather was perfect, and the turnout was good! My son went with me for the very first time. He used his best social skills, shook hands with the people I introduced him to, enjoyed the hamburgers and hot dogs, stayed much longer than I thought he would, and chose to leave when he felt uncomfortable. I was very, very proud of him. His social skills get better all of the time.

This story isn't about my 26 year old autistic child, however. This story is about neighbors.Like  the 2 year old I met at the picnic. His behaviors were the spitting image of my son at that age. He was a beautiful little boy, the MOST interesting grey eyes, and to this MOM, exhibited many characteristics of autism. His parents had their hands full keeping up with him!

I attempted to open conversation with his parents a couple of times. After all, if he is indeed autistic, I have a lot of experience. I could offer support and encouragement. But, they are fairly new to the neighborhood, and seemed a bit wary. Now that may or may not have anything to do with their son, who may or may not be autistic. It could have just been the nerves of meeting all of us old folks, many for the first time.

Our neighborhood is a throwback to a different time. The 100 homes in our subdivision are inhabited by mostly older folks who have lived together for decades, raised families together, become family for many. I can remember the address of the Southern California house I grew up in, if pressed I might be able to figure out the addresses of the rest of the houses on our street. But in my mind, and my memories they will always be remembered by the names of the families that were living there. Our house was the Jones house, William E to be specific, and we had to be because directly across the street was the William H Jones family-no relation. There were 6 original families, families who built their homes themselves, upgrading over the years. Then in the late 1950's a new subdivision replaced the fields across the street creating a new neighborhood. A very interesting neighborhood, a mix of ethnicity's and family styles moved into the really nice 3 bedroom houses-2 floor plans available-that were affordable for working class families.

The homes were built on the same floor plans, but every house had it's own color and landscaping as the families made them their own. As we children grew up together we knew all of the houses by the names of the families. We knew that we were safe on our way to school as we walked past the Bartletts, the Martinez, eventually past the Bachelor's house. As an adult I know that the bachelors were a same sex couple. As a child, they were just the Bachelors, a very important part of our community. They were always there to lend a helping hand when needed.

I thought about the Bachelors today. I was reading some really hate-filled comments on facebook, and I felt so blessed that I grew up in a diverse neighborhood. A neighborhood where you were not judged by anything other than your being part of our lives. I don't know when it dawned on me that the Bachelors were a 'same sex' couple, because it just didn't matter. What mattered was that they were neighbors. Good neighbors. It can be so easy to get jaded in this day and age, but then I think about our neighborhood and the neighborhood I grew up in. When I see people saying ugly things, I need to remember that there are places in the world where you can grow up to believe that all people are just your neighbors and it doesn't really matter whether you have much in common with them other than the most important thing, they are part of the weft and weave that makes up the tapestry of your life. Just like this neighborhood has been for my unique son, and hopefully will be for the little guy with the grey eyes.