I have written on Kos since 2004. But in all those years, I've followed one basic rule.. I talk a lot of details, but I generally avoid the direct, head on information that would lead people to know who I am, or my real background. Today, I'm taking a step I never thought I would, I am going to break down that wall so I can tell a story - the story of my life in a way - and the story of what heroes in my life have looked like. And where we are now.
May 9, 1977 is one of those days that means the world to me. Outside of my marriage and my children, it's one of the most important days in my life. I was not yet three, and so I don't remember it "head on", but it was the day that transformed my life, and the life of everyone in my family. On May 9, 1977, my brother was born. Born with a unique disability - Osteogenisis Imperfecta, a brittle bone disorder, his birth changed everything for us.
In the first few years of his life, things were not always well. There were protests on our yard; he, after all, must have been born as a curse for my parents being Catholic, you see. This was, as they would say "Mountain Logic". Being in Rural Arkansas, a rare brittle bone disease could only be one thing, of course.. a curse from God.
Ah, it was a different time.
That's not saying there weren't issues. There were. Big issues at times. People just didn't quite understand OI very well. The OI Foundation existed as a simple, typed up insert that was mailed to a group of people whenever they got a chance. Doctors didn't quite get a grasp on it. As a result, when sick, there would be tests, studies, and work. Through all of it, my brother became my best friend. Because even at age 7, I couldn't imagine anyone braver than my brother. It seemed.. impossible to think of anyone as that brave.
Like many young children, he had grabbed onto a small doll, a doll we called "Genie", sewn together of whole cloth, a simple raggedy ann type doll with yellow hair, Genie would be a comfort. When he battled a broken bone, broken ribs, or an illness, Genie would be a something he could hold onto. Soft and sweet, the doll could endure things when he couldn't. At a meeting to handle a blood gas test in 1981, Genie took the first shot, one of many she would take for a few years, to help let him know things would be OK. Not everyone could relate to the fear and the pain of being poked and prodded, but Genie could. Genie took the same shots, the same tests. If she could bear an IV, so could my brother. Blood gas was a tough test - (and believe me, when you're 4 and the test is as it was in 1981, it WAS rough) - but Genie would give you the courage to get through it.
But the courage to get through something isn't always the same as the ability to get past it.
In preparing for Kindergarten, our family was informed that the school district we lived in in rural Arkansas wouldn't welcome him to their school. Too much risk. And, as one board member said "what does it matter, what could he really learn." Before the ADA, before an appreciation of the disabled, this was the advice... Give up.
In 1982, with the support of my mothers family, we relocated to Kansas. Kansas, it seemed at the time, would at least be willing to provide him an opportunity for school - more than we could receive where we were, and it was a chance. We uprooted and moved, returning to my mother's childhood home to give her son a chance at an education and a family a chance to move on.
In 1984, rather than put in an elevator or trappings in the school to support an education for my brother, a computer was assigned to our home along with a video tape library that allowed us to order in educational videos as we wanted them through the lending library.
It amazes me, now, how well that worked out. At the time, school districts viewed computers as toys. And the idea of a a video library and learning materials available at our request? Why, that was nothing. But the school district didn't appreciate the eagerness of a small boy to learn. They couldn't have imagined how head strong my brother was to get not only an education but to use his mind in ways they couldn't imagine.
While other students might watch one or two of the educational videos a month in school, my brother would order five or six at a time. School in second and third grade might start at 8AM, but didn't always end until 8, 9PM, when he was through reading and watching. He was voracious about what he learned, and his imagination grew with every step.
My mother, at the same time, became an advocate. We were a family that wasn't wealthy, but a family with big ideas. And changing the world was big on my mother's agenda. And changing the world would begins at home. Campaigning for schools, check. And with a victory in hand, she turned her mind to improving our town and community, instituting clean ups, a town craft fair and other events. All the while, she pushed for the improvement of schools and treatment of her kids and others.
It was 1989, understanding the issues of education and fearing for high school, my mother began a long conversation with our then senator, Robert Dole (R-KS). We were nobodies, really.. people who couldn't donate significant money, no major resources, but what she was could best be summarized as a warrior. She was one of the bravest damn warriors for a cause I have ever, ever known.
After the birth of my brother, my parents formed "Sandpoint". There is a very personal and private story to this that I will not tell at this time, as I have promised to tell it only later, in a very specific moment. But Sandpoint was designed to say: just because something seems so vast, so empty, it doesn't mean that there can't be a point to it. There is a point to everything, to every challenge. And how you rise to it says something about you.
And in 1989, that battle for how a small woman from nowhere Kansas could help change the world really began. It was just a letter here and there, some conversations. Dole had come to the town craft event one year and even stopped in, just to say hello. Keep writing, she thought. Make my case.
In 1990, though, it was my brother who made the case.
You can google the story, but the summary is this: A small boy with Osteogenisis Imperfecta wins the state National Geographic Bee. The part of the story that I can't find that is missing is the story of the State Bee.
The State Geography bee that year was held in Topeka, Kansas.. my brother was so eager and excited to go, to show that he belonged; that a kid with a serious disability was sharper than anyone could appreciate. But right before the bee, a tragedy occurred: he had shattered two bones, putting him in serious pain and unable to be in his wheelchair. He would need to be laying down throughout the bee, and he would have to focus on winning while in pain.
Through it all, he went through the State Geography bee like a hot knife through butter; his story became a testament of determination... and in a lot of ways, a testament to inequality. His future still was unsure because his disability limited his high school options. He couldn't travel, and no one was sure how he'd go to DC to compete.
Could the first alternate go? Was this enough of a success, hurray, he won the state level, but maybe a "normal" kid should go.
Within a week, Ewing Kaufman, owner of the Kansas City Royals, sent someone to our house to meet with us. In the middle of nowhere Kansas. He can't fly, doctors said because the pressurization would be bad, he could rupture ears, etc. Mr. Kaufman made us an offer: fly private. We can pressurize on the ground slower, and we can fly lower, and we'll make sure you get there.
We met Ewing Kaufman and his staff at the midtown Kansas City airport; as a 15 year old kid, I don't have to tell you how exciting this was. George Brett shook our hands. We flew in a plane with Kaufman himself. It was such a whirlwind that thinking about it now it's probably part of why I've remained a Royals fan, even though Kauffman's words of wisdom to us on that trip don't seem to stick with current management ;)
I would meet Bob Dole twice more in my life, and while I will not say much in regards to his presidential aspirations and you're free to disagree with him on numerous and maybe all issues, I will in many ways remember his efforts, response letters and notes to fight for those with disabilities.
He didn't win the National Geographic Bee - but we enjoyed DC, and we experienced the world, it was the first time he had a chance to really travel.
High School was an experience for all of us. As was my exit to college. And his exit to college. Thankfully, there were no huge events, but it was still a fact that we were all moving forward, and that my mother was swinging the bat for us.
In 1995, my Junior year of college, I became a victim of a serious violent crime. As some here know, in my Jr. Year in college, I was victim of a violent assault that left me hospitalized for a significant amount of time, and for years, I have had to deal with some of the consequences of that.
While I laid in recovery, my brother came to my side. I have never known anyone who says prayers that in my mind matter as much as my brother. I am now in the not-believer category, but if there is a deity, the ferver and honesty to which my brothers voice is heard would be like a giant buzzer in the halls of heaven that could not be ignored. As he prayed for my recovery and rooted me on, I reminded myself of all of his struggles: who was I to give up, no matter what my situation when he had done so much. If he had the strength, then I had to have the strength.
I had been a huge Tori Amos fan, a monumental Tori Amos fan, but it was that recovery that cemented her position in my life.
The Song "Flying Dutchman" became a way I felt about the world...
Hey kid, I've got a ride for you.My mind was a scramble. Facts were sometimes right, sometimes not. I had a different view of the world. I was at times angry, at times weepy, but I mostly just wanted to move on. People kept telling me: nothing will be the same. It's not going to be the same from here on, get used to it "Straight Suits, they don't understand.."
They say, your brain is a comic book tattoo
And you'll never be anything.
What will you do with your life, oh,
That's all you hear from noon till night.
Take a trip on a rocket ship, baby, where the sea is the sky.
I know the guy who runs the place and he's out of sight.
Flying Dutchman are you out there?
Flying Dutchman are you out there, Flying Dutchman?
I set out on proving that wrong. I began work on a lot of technical projects, something I was good at having been a computer user since 1984, a software developer and a good communicator. I began work at several companies as their outside consultant to convert networks over. But it wasn't long before much of that changed.
In 1997, three things happened: I met my wife to be, I met friends I would keep for my life, and my brother suffered an accident that would change my view on the world.
I met my wife at that event, and outside of my brother, no one has shaped my life more than my wife.
At that event, we held a fundraiser for RAINN, the Rape, Abuse and Incest National Network. We raised a significant amount of money, and I knew then that just as my mother had her cause for the disabled, I wanted a cause I could believe in and help. And for me, RAINN hit home. I had never been sexually abused, but part of the reason for my assault in 95 was because the kids who attacked me assumed I was gay (or at least that's what they said).
I returned home and knew I had to stay in touch with my "wife to be" (she didn't quite know it then, but I did). but that fall, my world was upended. My brother was involved in a serious accident; a student at his university wasn't paying attention and ran his electric wheelchair off of the sidewalk. The electric wheelchair crushed him, shattering multiple ribs, legs and other bones. The calls from family came everywhere. This was it. My brother would die.
He had sat at my bedside, it was up to me to sit at his. I sat for him, night and day, and while I couldn't pray, I held his hand, I talked to him, I said everything I could say. I cried. I talked to friends. Don't let this happen. Don't let someone so bright pass away so early.
After about a week of pretty touch and go, he managed to pull through - surprising almost everyone present.
I had a moment with my mother in a hallway, where, eyes full of tears I told her my deepest fear: what have I accomplished in this world? I may be under 30, but look at what you've done. Look at what my brother has done. What am I doing, where do I go from here?
(Note, this came out much, much later, but very much fits my mood the way I remember those nights)
The battle was done. My brother was out of the woods, and I guess, in a way, we had won. He would live and his life could move on.. and boy, would it. But where would I go from there? Why couldn't I sort out a future for my life.
There is a moment in the film "Love, Actually" that I love very much because it says a truth that doesn't get heard often enough.. "Love isn't always dignified or pretty.." in that moment, in the hospital, I knew that no matter where I went in the world, no matter how my life changed family would always be a love of my life that would never leave me. And the love of my brother was something that wouldn't always be dignified; I was OK with weeping uncontrollably in a hallway, but what it would never be was embarrassing. I would never be ashamed to shed a tear for the love of a family member, never.
But I was also committed to my first cause. I would put effort into making my own dent in the world, just as my mother had with the ADA, I would work to help benefit those who were victims of crimes like myself, and more importantly, victims of sexual crimes in ways that I could. And fundraising, donating money, writing letters and advocating would be a big part of that.
In 1998, my wife & I "toured the country" going to numerous Tori Amos concerts, several back stage meets and I devoted all my resources to raising money for RAINN.
Shortly after, we had our first son.
I had always thought that the mission of my life would be to advocate for the causes I had chosen, but the birth of my son taught me that sometimes the fight chooses you. We knew from early on that he had some form of disability, but in that time period, mental disabilities were often misdiagnosed and no one was quite sure what autism really was. By 2 years old, when speech was slow in coming and potty training wasn't happening, we were looking for help and resources.
From the moment he was diagnosed, I added being an advocate for autism to my causes. I've had the good and the bad, the days where everything would go well and the days when nothing goes well, but through it all I am reminded of my heroes. People who came before me who stood up to unbelievable odds.
By Age 3, our son was already in early school programs designed at helping those with autism issues. In 2003, it just wasn't as well addressed as it is now.. and we're still a long way away. But we weren't making the progress we wanted. Para professionals were called to assist, help and aids, and teachers.. oh, so many teachers.
But there were two teachers in particular who from the early goings took our son under their wing and said: we will go out of our way to help. We want him to succeed, we want what is best.
Just like my brother and my mother, they, in their own way were heroes. They gave a child with serious issues a chance to become something truly special.
I've dwelt on this a lot since the shootings in Connecticut. I think about it because of the days where things did not go well. In 2010, when, in a fit of rage and frustration our son threw a desk across a room, clearing a classroom and causing police officers to be called. A substitute teacher had tried to pull him away from a sink for "excessive hand washing" and his panic spiraled out of control.. a computer was destroyed, a desk was destroyed, and a teacher huddled in a classroom out of a bit of reasonable fear until four police officers could be brought in to help contain a 13 year old boy.
I think about those moments because they were tragic, and I've blogged about them here as they happened. I blogged about them because of how they changed my view on issues. But I blog about them now because they cause me to think back to that moment in a hallway in a small town in Kansas. What do I have to do to be the person I wish I should be?
I'm fortunate, I suppose, that he was just arrested. But I have stewed on this for the last day since the NRA speech, because in part, the assertion of a database of people with mental health issues.
A major mental health advocacy group blasted the National Rifle Association today for calling for a national database on people with mental illnesses.I am reminded of that terrible day in a classroom where I had to help a teacher and my son. I'm reminded of the help he needs that he now gets. And I'm confronted with a group that wishes me to register him, like an item or a thing, in order to make sure they "know where he is".
In a brief aside at a press conference this morning, the NRA’s chief executive officer blamed the elementary school shootings in Newtown, Conn, in part on the “nation’s refusal to create an active national database of the mentally ill.”
How comfortable does the NRA feel that I am with a "list" that separates him from all society. That immediately lists him as "less than". How do you think a parent like myself feels about how this could play out in a classroom; a young boy who loses control in an OCD event.. instead of waiting it out, maybe we just shoot him. It's my nightmare. I have had that dream more than once over the past few weeks; if a teacher or other had a weapon when he tossed a desk and destroyed equipment.. would someone have shot a 13 year old boy? Is putting him on a list that says he is "less than" a list I ever want to happen?
It's 30 years ago that my mother picked up her family and moved everyone to Kansas, at that time, a chance for hope to get her son and education. 30 years ago, in 1982, when people told her it wasn't worth her time.
I grew up with the strong belief that money isn't what makes you happy; family is. That victories in a business mean nothing if your house isn't in order. The best Christmas in my lifetime was one shortly after the birth of my youngest sister, where we as a family were so poor from the cost of medical that we ate rice for days and traded hand written cards made on card stock.
My mother had us pull together a small amount of money, when we didn't have any, and we bought a present for a kid we didn't know, we went to the post office and mailed it: "To Santa in (random city that my brother picked)" With a short note inside the box "To Santa of X City, we know there are children where you are who won't have Christmas. Please, let them have Christmas from us."
We went home and traded our cards and small gifts. It wasn't the gifts that made Christmas. It wasn't the things and items. It was the fact that we had each other; our own private army, who would look after each other in our efforts to change the world.
We fought the battles to win.
The NRA is asking us to create a list to tell us that my child should be registered for his existence. But registering your gun isn't a necessity. Branding people is better.
To those who want to blame those with mental health problems, with those with autism, I want to tell you something.
This is what love looks like.
This is a how a teacher and a para can work with a child who has autism, and occasional rage control issues and make him be OK.
All I have thought about since people began blaming autism was the wait for this moment. She called me the night after and said "you know, they are going to try to blame it all on kids... it could get ugly.."
But as a parent of an autistic child, I can tell you this: the pushback you get from me comes from decades of experience, hard fought battles won and lost. One voice in the wilderness. A person who knows violent crime better than you, Mr. NRA, and a person who knows discrimination and hate for disabilities better than you will understand.
You can pick on a lot of people, Mr. LaPierre. Maybe they all cower at your words. But you're going to find there are a lot of parents just like me who aren't in the mood to cower. I've seen evil, Mr. LaPierre. I've seen it up close. I've seen hatred, Mr. LaPierre. I've seen discrimination, I've been present when people thought they could tell us who's life was worth less than another.
30 years ago, someone told all of us, gathered in a room for Christmas that wasn't good enough. That we had to do better. A little over twenty years ago, I watched a victory as the Americans with Disabilities Act passed. Fifteen years ago, I begged for the life of my brother and best friend. 13 years ago, I welcomed into the world the life of my first son and my friend.
This week, Mr. Lappierre, you made an effort to define people as less than they are. You decided major lists that would divide people is OK.
I would encourage you Mr. Lappierre, to come with me to a special education event and watch some of the kids who have the biggest hearts of anyone I've known find their way through the world. And then you tell me: what gives you the right to paint a target on their back?
I can tell you what love is, Mr. Lapierre. It isn't money. It isn't things. And it sure as hell isn't a gun.
4:20 PM PT: I am honored, and humbled by the fact this diary is at the top of the Rec list. But I am more touched by the feelings and sentiments in the comments. It's sometimes hard to write about your life, and a bit scary but I am appreciative of your thoughts. I mailed my letter with many of these same thoughts to NRA board members. People like my mother, brother, myself are just a small piece of the puzzle. I am proud to be another small part of that puzzle, and I am glad to take the hand of any person who joins me.