Category Archives: Life Happens

Change Should Happen, But…

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Those who don’t know history are destined to repeat it.~ Edmund Burke

Another eye-opening day for me. I had the opportunity to visit the elementary school my children attended many years ago. This time I was the outsider, unknown to most of the staff. The school has had three principals and four assistant principals in the last eleven years. It went from being highly sought after as a placement to being on a watch list for poor performance. Not to inject too much politic…but my school mill levy has tripled in the last 11 years. My home state just shot down a state tax increase for education. And, surprise, our politicians can’t seem to understand why no one wants to give money to education.

But, I digress. After the meeting inside the school, I sat outside and observed recess for 4th and 5th grade. I was sitting in my parked vehicle. Lest you leap to the conclusion that I had some bizarre reason for watching, I was with a parent who wanted to see why her kid was being “written up” for inappropriate conduct during recess. What we saw was very enlightening.

The past…when my son was in 3rd grade at this school, two kids pinned him face down in the gravel and stomped n his back until he was bruised and peeing blood. The school insisted it could not have happened under their watch. I’m pretty sure I would have remembered if it had happened under my watch. He didn’t leave for school in that condition, he came home off the bus in that condition, ergo this happened at school. Oh no, I was told. Our students are supervised by four adults who each stand in a corner of the playground watching for these things. Well, I got mad and filed a complaint which was not well received, but was litigated out in favor of my son. The terms included increased playground supervision.

Today, I watched four women (3 teachers/ 1 para-professional) stand together in a cluster by the door with their backs to the playground. I saw students practicing what I can only assume was their form of martial arts – by hitting and kicking each other.  I watched a female student jump on a male student’s back for a piggy back ride. I saw 6 children attempting to build a human pyramid, only to have a seventh child come over and push the top child off so all came tumbling down. I watched a child fall off playground equipment and limp away in tears. A bit later, I watched as 4th grade girls jumped on their male teacher (two providing supervision for over 100 students) and he provided piggy back rides. I watched children throwing rocks at passing cars. I think you get the idea.

What I didn’t see was supervision. Yes, there were adults out on the playground. Most of the time, they had their backs to the students and were engaged with each other. The parent I was with wanted to know how many of these other students had been written up. I told her I would have to say none as the adults weren’t watching.

We all wonder where bullying comes from and how it goes so far, so fast. In 30 minutes of observation coupled with my prior experience and that of the parent with me, I can safely say that it’s because kids will be kids and if the environment is right, they will hurt each other. I have absolutely no doubt that what happened to my child could easily happen to another child at that school.

Before everyone berates me for being a helicopter parent, let me just point out that this was one snapshot, eleven years after my son’s incident, and nothing has changed. The school and the district have not held up their end of the bargain. It’s not a matter of what ifs. It’s only a matter of when. There is enough money in the district budget to send teachers on two-week fully paid “trainings” for curriculum in Canada but not enough to ensure adequate and appropriate supervision on the property. There is a cry for safety in schools and yet not even the most basic situational awareness was demonstrated today. I sat in a parked car for 30 minutes, outside an elementary school playground and no one questioned me. I saw children almost a quarter-mile from an adult and the adult wasn’t watching. We don’t need to wrap our kids in plastic bubbles, be we should expect that someone knows what’s going on.

So, I leave you with this thought: History does repeat itself. When we fail to learn from our mistakes, it repeats itself more frequently. Throwing money at the problem isn’t always the solution. Sometimes, you need to look at yourself and ask if you’re doing the best you can do at your job in life.

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Strength in Diversity

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It is time for parents to teach young people early on that in diversity there is beauty and there is strength.~ Maya Angelou

I had an interesting experience today. Someone was reviewing my resume and commented on how many things I’ve been involved with over the years. Also noted was the duration of time I’ve committed to various interests. I know that everyone’s interests change over time, but apparently my pattern doesn’t fit what this individual felt was average.

It was an odd feeling to have my life dissected this way. Trying to find a way to explain why some causes are nearer and dearer than others. I thought that I was just going with the ebb and flow of life. Apparently, I’m not. I’ve always been an avid reader and continue to read 3-7 books per week. I go though phases of genres, but you will rarely find me without a book nearby. I’m a professional student, pursuing knowledge just for the sake of knowing. I take up the banner of many causes.

I won’t dismiss that I share Autistic traits with my children. I don’t obsess over topics to the point of excluding other activities, but I do want to know as much as possible about my current interests. My knowledge is far from encyclopedic as I forget things when they are no longer useful. But, the reviewer though it odd that I can retrieve esoteric information when prompted. I feel like a science project right now.

At what point do we earn the label of “abnormal?” I really want to know how many people it takes to make that determination. I frequently read articles written by adults with Autism that they are tired of being told how weird they are or how they feel “abnormal” because of the way people treat them. After today, I can honestly say I relate.

We are so busy trying to label and containerized each person that we are forgetting that our differences are what make us diverse. This diversity is our creative force. It’s what generates new ideas, breaks new social ground and pushes each of us to be better people. Instead of fussing over our differences, let’s embrace them and use our collective strength to progress towards greater humantity.

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Wake up!

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All life is an experiment. The more experiments you make the better.~ Ralph Waldo Emerson

Today is, of course, a brand new day. An opportunity to “be all I can be” and to “seize the day.” I’m sure if I gave it more thought I cold come up with a whole string of clichés that have been used over the years to tell people to live in the present.

This week has been crazy busy so far. I’ve been helping families who have children in the public school system. These families are fighting for their children’s right to attend school unharrassed. To be engaged and included in activities. To have the same opportunities as their peers. Wow! It sounds like I just stepped back 50 years in time.

And it feels like it some days too. These children are affected by disabilities. Federal law mandates they be provided with a free and appropriate public education. The sticking point seems to be “appropriate.” Some schools deem that just allowing kids with disabilities to attend “their” school is sufficient. Other schools go above and beyond to meet the student’s needs. It’s a broad a spectrum as any disability.

My daughter told me last night that in one of her classes, students with significant needs are brought to class. The teacher makes a point of telling the group “Good Morning Special Friends” and then proceeds to have every student walk over and greet each of the “Special Friends.” My daughter is in high school. I know she would be mortified if someone called attention to her in this fashion. Why does this teacher insist on singling out the students with disabilities?

It’s most likely not mean spirited. It’s probably lack of awareness and assumptions. That doesn’t change the fact that it’s wrong. It’s legally wrong because the student’s right to education privacy, in this case being openly “outed” as having disabilities, is being violated. It’s also morally wrong. The founding fathers of the United States proclaimed that, at least in America, all men are created equal. We’ve fought wars of this ideal. We’ve been forced to open our minds and let go of long-held beliefs about various things. Now, we need to let go of segregating and labeling people with disabilities.

Yes, all of us. Stop seeing the wheelchair and start seeing the person. Stop whining about people parking in handicapped spots who seem to be “okay.” Stop assuming that a person who talks slower or not at all isn’t capable of communication. Stop believing that someone who is different from you is less than you.

It’s hard to let go of long-held beliefs. It’s been about 40 years since mainstreaming became law in the schools, yet “teams” still insist on separate classrooms for students with disabilities. It’s shouldn’t be about money, pride or personal beliefs. It’s about human beings. It’s about seeing beyond how something affects you and realizing that the effect on someone else is far greater than imagined.

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Those People!

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I’d agree with you, but then we’d both be wrong.~ Unknown

Have you ever met a person who just has to be right about everything? I’ve met quite a few, myself included. I guess it’s human nature to want to always “win” a discussion. To have the last word in an argument. But what happens when someone is so completely sure they have the only opinion that nothing else matters?

Some context here. I’ve been diagnosed with a disease that shows up in Rare Disease databases. Still in the process of confirming it and coming up with a lifelong plan for managing it. I have three other major diagnosis that must be managed as well. So, four biggies plus all the little stuff that humanity experiences. As you can imagine, the testing and doctor visits that led up to this have involved a number of personalities. Some were overbearing, some exceptionally timid. Some had nothing to contribute, others had some great theories. When chasing zebras, it’s best to remember that the hoofbeats make a different sound than expected. And then ,there was the doctor today.

Oh this one was a beauty. Hadn’t read my file until it was opened on the computer in my presence. Didn’t know my name, my medical history and had not even become familiar with why I was there. The file was read for 3-5 minutes and then the doctor launched into all the ways I could change my life. When I mentioned that x-condition wasn’t compatible with her suggestion, the answer was “what does it matter?” When I had processed a chunk of information and asked a question, I was told “don’t interrupt MY thoughts.” Ummmm, what about me? Isn’t this visit about me?

Not to be crass, but not only does this specialist charge my insurance $600 per visit, It cost me about $500 to come here this time. And I wasn’t even allowed to ask questions to figure out how to use the information being provided. It was literally do as I say or else. Well, I’m taking the or else. While some useful suggestions came out of the conversation, most of it was not applicable. It was a practiced speech, obviously recited so often that questions threw it off.

So I guess we’re both wrong. I agreed with the doctor just to stop the firehose of relatively useless information and being chided for not welcoming the doctor’s manna from heaven. The doctor was right from the start because as far as they were concerned, I’m an idiot who requires strict supervision, The doctor’s parting shot as we walked out was “I know you’ll do what you want anyway so why am I wasting my time?”

I honestly feel sorry for the doctor. There was an opportunity lost today. An opportunity to make a difference in someone’s life. But due to arrogance and poor presentation, the information is lost.

The lesson for all of us is to remember that regardless of how you say it, when your past catches up with you it’s not pretty. You don’t have to win. You don’t have to be superior. Just open your mind, see the potential and work with it. We are all students and we are all teachers. Recognize the time and place for what needs to happen and your past won’t run quite as fast to catch up with you.

Chasing Zebras

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Medicine is a science of uncertainty and an art of probability.~ William Osler

Anyone who has a chronic illness can tell you that reaching that diagnosis was a long journey. Even the diseases doctors know the most about take a winding path to diagnosis. Imagine spending almost half your life trying to figure out what’s wrong with you. Being told it’s psychosomatic. Having doctors shake their heads and announce there’s nothing wrong with you.

This is my life. Fifteen years ago I had a doctor tell me that I needed to see a doctor who specialized in finding “zebras,” or odd diseases. For various reasons, that didn’t happen until about 6 months ago. My primary care doctor finally agreed he had met his match and sent me to a major medical center. I’ve been at this center for 5 months now, shuffling from one specialty to the next. Learning all about insurance and bureaucracy. Oh, and the bureaucracy!

I feel like we’re in the home stretch now. That elusive diagnosis may very well be confirmed tomorrow. Let’s just say that getting here has involved scores of things that no person would readily agree to unless they were desperate. I guess that made me desperate. Trust me when I tell you that there truly are some um, odd, people coming up with testing. I would really like to meet the inventors of some of the diagnostic tests (who came up with using three IV lines for three different dyes during the same exam).

Sadly, if this is the diagnosis, it explains much but there is no cure. There are definitive treatment options which is a plus as my doctors will no longer be fumbling around trying to figure out what to do. It’s not progressive in that I will die from it. But, it does get worse and the complications are high. Over 40% of the people diagnosed with this disease die from complications. Before that freaks you out, the statistics on this condition are that it occurs in 1:50,000 across the globe. There is still much to be discovered and new treatment options are being explored.

So, I may have caught my zebra. I’m borderline hopeful right now because labels are what doctors understand. Labels are what makes treatment possible. Labels are what help track progression. Think about it…you break your arm and the doctors know what to do. Doesn’t matter where you are, the treatment is pretty standardized. But, show up with cold/flu symptoms and what happens? Some testing to rule out infections and then treatment based on your provider’s informed diagnosis. Show up with vague symptoms that don’t fit neatly into a box…you probably have a zebra on the loose.

So here’s to zebras and the people who chase them. I really, truly hope mine has been caught.

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All in a Day’s work

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For me, half of the joy of achieving has been the struggle and the fight, the pitting myself against the world and all its competition – and winning.~ Conrad Veidt

I admit it, I am competitive. People who know me from various venues can attest to the fact that I rarely go down easy. It might even be obvious to the readers of this blog, based on previous entries. Competition spurs me to think outside the box. To ponder other roads not taken and then beat my own through the jungle of life.

Some days, I feel very much like David of yore. Today was one of them. It began with a phone call at 0811 informing me that the medication, literally the last one we can try to find relief for one of my medical conditions, was denied by my insurance. I was welcome to appeal, but should expect at least 3 months for that process to go through. I spent an hour and a half on the phone to no avail. The rules are the rules I was repeatedly told. And, when I attempted to contact the rule makers, I was informed by recording that they were furloughed and had no expected return date. It was literally a morning spent chasing my own tail.

And then, I had an idea. As my mother has always told me, there is more than one way to skin a cat. I called the military pharmacy and asked if they stocked the drug. Why yes, of course, was the answer. Would they fill an out-of-state prescription? Of course, just bring it in. And just like that, I won. By thinking outside the box and fighting the good fight, I’ll get the medication and see if it helps. I’m still marveling at how two pieces of the same system can operate so ignorantly of each other.

So, my words to you tonight dear readers, are to never give up. Keep trying and remember that you are the only ones capable of changing your fates. Compete with yourself to find ways through challenging times. You may find other competition, but there is nothing so satisfying as winning one for yourself.

Clann

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Family means no one gets left behind or forgotten.~ David Ogden Stiers

Over the last few days, I’ve seen multiple stories in the media about families. A woman who has 15 kids now is demanding that someone, not her, take responsibility for them. A 5-year-old girl has been missing for two years and her family no longer mourns her. A young man was killed in a drive by shooting a year ago and his mother is still passing out flyers asking for anyone with information to come forward. A teenaged mother threw her newborn over a fence so her parents wouldn’t find out she had been pregnant. All this is swirling around my head, begging me to ask how did we as a community reach this crazy place?

I admit I was raised under rather traditional rules. My parents are immigrants (hence the Gaelic title of this entry) and raised us how they were raised. Even in the 70s, my childhood friends would comment on how weird we were. We ate dinner together almost every night. My parents were present at our activities. They were involved in our schools and communities. Discipline came swift and hard to violations of the house rules. My friends laughed at my curfews, since they had none. They laughed at the boundaries of my life, daring me to bike further from home in defiance of the rules. I remember believing that my mother was omniscient as I was always called out on those transgressions. Turns out she just knew someone in every part of my life who would call her and tell her I was misbehaving.

I look at all the “family” things that make the news and wonder how anyone could stop missing their child. How anyone could just give up. How anyone could abandon a child. The families that keep fighting are becoming less noticeable. The only place I saw news of Joe Bell being mowed over in Utah while on his walk against bullying was on social media. The family of a New York teen with Autism is raising money to offer a reward for the safe return of their son who wandered away from school almost two weeks ago, also on social media. A Florida family is trying to get the word out about concussions because their child died after a football collision, again on social media. Broadcast media is still going with “if it bleeds, it leads” and has no interest in sharing these stories.

I don’t think I will ever understand parents who have such callous disregard for their children. I hope my three children know that the village that raised them will welcome them back anytime. I’m pleased that they already seek to find the good in people and to work towards improving their communities. Because that’s what it’s about. Accepting responsibility, building community, strengthening relationships and knowing that your family has your back.

And just in case you missed it in previous posts, family is not defined by blood. Surely that is one of the first things most of us experience as children. But as we grow older, family becomes those we choose to allow into our lives. If each of us refused to leave others behind, I think humanity just might have a chance.

Red Herring

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“Comes The Dawn”
Veronica A. Shoffstall

After a while you learn the subtle difference
Between holding a hand and chaining a soul,
And you learn that love doesn’t mean leaning
And company doesn’t mean security,
And you begin to learn that kisses aren’t contracts
And presents aren’t promises,
And you begin to accept your defeats
With your head up and your eyes open
With the grace of a woman, not the grief of a child,
And you learn to build all your roads on today,
Because tomorrow’s ground is too uncertain for plans,
And futures have a way of falling down in mid-flight.
After a while you learn
That even sunshine burns if you get too much.
So you plant your own garden and decorate your own soul,
Instead of waiting for someone to bring you flowers.
And you learn that you really can endure…
That you really are strong,
And you really do have worth.
And you learn and learn…
With every goodbye you learn.

Social Experiment

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Do what you feel in your heart to be right for you’ll be criticized anyway. You’ll be damned if you do, and damned if you don’t.~ Eleanor Roosevelt

Well, here we are. I guess I shouldn’t be surprised. Statistically, my last blog should have resonated with many of you. I’m guessing it did, but the topic made you uncomfortable. I received exactly one comment on that post. Hmmmmm, and everyone wonders what stigma is.

Pardon my sarcasm, but obviously I’m not the ONLY one who feels stigmatized. If I were, perhaps that would explain why no one wants to admit that they struggle with the knowledge that they too are different. That without the wonders of the modern medical world, their lives would be very different. We are all quick to point fingers and happy to blame someone’s actions on their mental status. But when the rubber hits the road, support evaporates like water in the Sahara.

The news tonight covered stories about the woman in DC that ran into barricades, a man who shot his soon to be ex-wife, a veteran who is limping along and young woman who was recently traumatized in a random accident. Three of the four stories headlined with how the individuals never sought help for what appears to be mental illness. The young woman stated she could never go back into the building where the accident happened. Resilience of youth perhaps, but I suspect at some point she will be offered counseling for PTSD. So there’s our answer…blame erratic behavior on mental illness and try to comfort those who can be “saved.”

Eleanor Roosevelt really did nail it with her damned if I do, damned if I don’t statement. If I talk about mental illness, people slip off into the shadows. If I don’t talk about it, I’m as complicit as the rest of you. If I do talk about my personal issues, I become a “psych” patient. If I don’t, my doctors inadvertently do harm. If I do, my friends ignore me. If I don’t, they will never know who I am. I am the sum of my experiences, both positive and negative.

I challenge you to recognize that frailty of any kind does not make a person less human. It matters not whether it is a frailty you can obviously see or one that is invisible. And listen to your friends. Be the friend you’d like them to be for you. Don’t let the friendship evaporate because you are uncomfortable. Honestly, if I am willing to put this out into the ether, the least you can do is acknowledge that invisible disabilities do exist.

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State of Mind

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One has a greater sense of degradation after an interview with a doctor than from any human experience.~ Alice James

I bet that those who read the above can identify with the sentiment. Even the advertisements on television try to make asking a doctor questions seem like a pleasant and worthwhile experience. Medical practices use catchy phrases, colorful logos and photogenic people to entice the public to come see them. Haven’t you ever wondered why a profession that has been deemed “necessary” to modern man needs to spend so much effort on its public image?

I’ll come right out and state that I don’t believe physicians as a group desire to do harm. I believe they genuinely want to be helpful. Sure, there are a few that became physicians to improve social standing, meet someone’s expectations or perhaps lack the imagination to do anything else. I’ve met those physicians…my favorite saying is that someone had to graduate at the bottom of the class. I’ve met some that are quite compassionate and others whose bedside manner could freeze, well, you get the idea. I’ve met some who want to educate me, lay out my options. And I’ve met some that need educating. It is a mixed bag with respect to doctor-patient relationships.

But, I have found there is one thing that doctors as a group don’t handle very well. Mental illness. Just mention that you’ve got the blues and out comes the prescription pad. Try to convey how mental illness affects your daily living and you will most likely be met with many nods of the head, but no understanding. It’s an illness that has no cure, piggy-backs on other illnesses and is so stigmatized that people go to great lengths to hide any signs that might even be remotely interpreted as mental illness.

It’s time to break that stigma. It’s time to stop over and under reacting to the human condition. It’s time to realize that mental illness does not define a person. It is an illness. It isn’t simple to “fix.” It’s frustrating for everyone, especially the person going through a crisis. We need doctors to understand that in order to grasp what is ailing a person, they shouldn’t balk at our mental states because they are messy. We are people. By nature we are messy.

But doctors degrade me. As soon as my past comes up, it becomes the driving factor behind my medical treatments. They start talking to me like a toddler who needs stern guidance. They threaten to take away my decision-making rights under the guise of keeping me safe. Medical care is withheld “for my own good.” One whiff of mental illness and suddenly I’m no longer a person. Doctors act like I’m contagious and try to lock me away, to shoo me out of their office as soon as possible so they don’t “catch” it.

I am honest with my healthcare providers about my past. I want them to understand that this is part of me that I have to live with every single day. I need them to understand why some things that they suggest are not realistic for me. In response, I get labeled as “non-compliant,” “faking it” and “attention seeking” to name a few. I have those in writing from physicians I’ve just been treated by. They met me twice and decided that, despite reams of quantitative data and hours of testing, I’m “faking it.”

Maybe I should stop wearing my happy face all the time. Except then I’d be labelled with something else and probably placed in a mental health facility. This burning need (and of course, legal liability) to control my behaviors because of my mental illness is ridiculous. Ten years ago, I was in therapy. I was having a bad day and said it would be great to just go to sleep and never wake up. That resulted in police knocking on my door, performing a “welfare check” which I’m sure, had my husband not intervened, would have resulted in me being removed from my home and institutionalized.

So why do my doctors become so concerned about my mental health to the exclusion of my physical health? Is the driving need to preserve my life by any means possible only applicable when they think I might hurt myself? Do they ever consider that their actions, their fervent desire to prevent any behavior outside of “normal,” may be the reason people act abnormally? When I ask my doctors these questions, they stare at their shoes. I guess it’s easier to blame mental illness than it is to try to find answers.

We should not fear physicians. They have knowledge, but we give them far too much power. They make mistakes and based on anecdotal observation, may panic around people like me because they see themselves when they look at us. No one likes a reminder of frailty staring at them.

To those who live each day with mental illness, know that there are many others standing with you. Understand that even if others don’t admit it, statistically 3 out of every 5 people in he United States is affected by mental illness. No one can fully understand the effects of mental illness. I would tell you not to be afraid of doctors, but I can’t in good conscience state that. Until people stop placing a stigma on mental illness, we will always be at risk of being marginalized, degraded and ignored.

Today, just accept that we are all human. Help someone understand that mental status does not define a human being, Embrace your friends and family, warts and all. Support the people you know are struggling and always be kind because you don’t know what state of mind someone else may be in.

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