Raise Expectations

advocacy, fellowship, information

Raise Expectations

The Right to Compete

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As most of you know I have a daughter with Down syndrome so we have become, through her, part of the Special Olympics community. As anyone knows when you have a friend or a family member who happens to have a “diagnosis” you tend have extraordinary hearing when it comes to conversations regarding that said “diagnosis”.

One of those time came over coffee listening to a conversation a couple was having regarding the difference between The Olympics and the “Special Olympics”.

The conversation came to a discussion of “what is the Special Olympics”? They then asked what it meant if someone was competing in the “Special Olympics”. The couple was very confused about the differences between the Para Olympics, Special Olympics, and Olympics. A well meaning participant tried to clarify by saying.

“In Special Olympics everyone is a winner, in the Olympics and Para Olympics they actually compete.”

It was one of those moment when you know some grave misunderstanding has just taken place and you feel your heart rate rising as you try to take stock of what has upset you. The people having the conversation weren’t trying to be mean, but they also had no idea.

Anyone who has ever been to a unified Special Olympics soccer match (or any other special olympics event) has seen the competition. Our last match someone was injured as a special olympics athlete dove with reckless abandon to try to save the goal. So as I am listening to the conversation I have visions of my daughter crying when they loose, and jubilant when they win. I am then filled with memories of the competing teams partner helping to the tie the shoe of one of our athletes in the middle of the game. As these memories are filling my head I am still trying to formulate what I want to say to help clarify my feelings as much as educated the people.

Sadly, I did not have answers to be able to explain my feelings during our coffee conversation so we left with the happy nods and the silence of a chance encounter that could have been something more. I was upset with myself, not just for not having corrected some miscarriage of justice, but because I couldn’t formulate a coherent thought to explain more thoroughly/completely. As we left, I am sure we had conversations and made plans, but I am at a loss to say what they were as my head was still working on the problem.

Later that afternoon my subconscious finally gave me an answer I could get my teeth into.
You see, in Special Olympics they are all winners not because they all get ribbons or medals. Nor is it because they all win every race no matter the place they finished. They are all winners because the have “won” the right to compete. For them being allowed to compete is a victory in its own right. When no one thinks you are capable of anything, being capable is a victory. When everyday is a struggle to do the things that come naturally to most of the rest of us, you count every victory by a new measure and you look at every task as a different challenge.

Having lived with my daughter Devon who is now 20 years old I measure my success in life by a different stick and can embrace life with a perspective that I will always be thankful for.

Sean Adelman is an orthopedic surgeon who lives in Seattle Washington with his wife, three children and two dogs. Sean has served in the Air Force and is currently in practice in Seattle. He loves running obstacle races with his children, playing guitar, and writing. Sean’s middle child has Down Syndrome which is what began his journey of becoming an author and an advocate for disability rights, inclusion and acceptance. “My greatest joys in life have been times spent with my family.”

The Black Box Theory

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Fear of the unknown; I spend much of my time as a surgeon trying to educate patients. Part of what I do is, of course, treat them. Sometimes, just the fear of the unknown, not understanding what is happening to your body is more scary then what is actually happening.

I call it my “Black Box Theory”, by educating people so they know what is going on they can begin to cope and move on. When you don’t know your imagination takes hold and, in my experience, is often worse then what is actually going on. So if we can understand we can then cope and move forward. No matter how bad it is we move forward. This certainly isn’t always true but it is a crucial part of my practice and frankly a crucial part of the human condition.

The reason I am going on about coping is that the new DNA prenatal testing for Down syndrome is in the news again. There has been much concern by those of us in the Down syndrome community with this early testing that more babies will be aborted because its much easier to test at an earlier time during pregnancy.

The argument made in the article, https://www.theguardian.com/society/2016/nov/04/new-prenatal-test-for-downs-syndrome-will-not-lead-to-more-terminations-nipt , is that the incidence won’t change and that the good of the test far out weighs some of these concerns that based on their mathematical models doesn’t hold true. The truth is that if we can avoid some of the invasive testing to confirm the diagnosis like we have had to do in the past, it is a good thing.

When a new parent gets unexpected information, its scary. Even if the information isn’t really bad, its scary. Having a new baby is one of the most stressful and wonderful times in our lives and any unexpected information is going to send the new parents tumbling.

How do we get from my Black Box Theory to prenatal testing? I truly believe if parents are given support, and good information, if we can open up the “Black Box” then they can cope. What is really missing is a great way to identify and support newly diagnosed parents. This is obviously not just specific to Down Syndrome, but it is the one I can talk about with the most knowledge. The Down Syndrome Community is making great efforts to educate parents, but a lot of the parents aren’t going to reach out, they are going to hear what the doctor says and decide.

I am a doctor, I don’t know everything and I can tell you for a fact that most of the people handing out information about Down syndrome don’t really know what they are talking about. They know about the chromosomes, they know about the things associated with Down syndrome, but, they don’t know what is like to raise a child, what the possibilities actually are. When you are a new parent its all about the expectations, you have a precious new gift with endless possibilities, but then maybe not?

When you give the result of a test without actually understanding the meaning of the results with its implications, well its like…. Telling a blind man that your shoes are blue. What is dangerous about the test is not the test. The danger is how its’ used and explained. Knowledge is not bad, misused knowledge is dangerous.

There are no great Truths, no formula to decide what is right for any particular family. This blog is my attempt to implore the medical community to think, to care, to hope. Inventing a test with no plan on how it should implemented is the problem, not the test.

Sean Adelman is an orthopedic surgeon who lives in Seattle Washington with his wife, three children and two dogs. Sean has served in the Air Force and is currently in practice in Seattle. He loves running obstacle races with his children, playing guitar, and writing. Sean’s middle child has Down Syndrome which is what began his journey of becoming an author and an advocate for disability rights, inclusion and acceptance. “My greatest joys in life have been times spent with my family.”

Joy It’s All About the Focus

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The Holiday season is supposed to be about Joy, giving, family, our most positive traits are supposed to bubble to the surface this time of year for a collective happiness that reminds us of our humanity and the good that can be had. This is at least what most of the shows on the 25 days of Christmas would have us believe.

The fact is, most of us struggle to find joy in our daily lives and many of us become even more depressed over the holiday’s simply because we are reminded, in vivid detail, how lacking we are in the holiday spirit. This year is even worse for many because it comes on the heals of a world seemingly in anger and a country which is split, not just across partly lines, but across deeply held personal beliefs about what is important to us. Families and friends are fending each other off because of who they voted for. I wish it was just the United States, but you cant pick up a newspaper without seeing something in the international community that rivals the internal conflicts of the United States.

I am writing this, not because I wanted to remind people that it is sometimes depressing over the holidays, but because like most people I struggle to find ways to maintain a positive spirit when it should be easy. This is not just the post election climate for my family, but really the first year none of our children are “in” to Santa Claus. Our two daughters are in their early twenties and our son is in high school. My wife and I picked out the Christmas tree this year by ourselves! I know, it sounds like blasphemy not a date night.

With everything going on, we put up the tree, just the two of us, no presents, no fire, no hot chocolate. Our living room is filled with things, but no substance and it really hits, that things are changing. As I alluded to above we feel the pressure of being somewhat sad in a time of year that we are supposed to be happy.

I think of emotions as something that has its own physics, sometimes they are like a snow ball that gathers energy as it rolls down the mountain side, and the longer it rolls the more energy it gathers and the harder it is to stop. Frustratingly, it seems the negative emotions are the likely to follow these physics. Positive emotion are much more often like playing a game of catch you see it coming and you do your best to catch it before it goes by you, then once caught you have to throw it back and just hope that it comes your direction again. There has been much written about fostering those positive emotions, that being happy is a choice that we can all make. The reality is that being happy is still trying to catch that ball and sometimes you miss and drop it.

After moping around for a few days I found myself looking at a picture of my kids when they were really little making snow men out of the white sand in Destin Florida where I was stationed in the Air Force. I don’t know how long I sat there in silence, but it was long enough that my wife had to ask me if everything was ok? It wasn’t an epiphany, but at that moment I was able to focus on something that made me happy and reset my feelings.

Feeling, what dude says things like feelings! I have tried to rewrite this several times and still feel weird about writing FEELINGS.

I have written previously about family and the joy it brings me, after looking at that picture of my children I was reminded that the most joyful moment of my entire life our those moments with my children. I could put every second of my 47 years of life together with all of those seconds that I was not with my children and not a single event would ever be as joyful as those moments with my kids. Not every moment is joyful, but man, the ones that are just blow everything else away. Every “what if” in my life is rendered insignificant when I realize that making that “what if” decision would have changed one of those moments that is burned into my consciousness with a positive energy that I simply couldn’t ever sacrifice.

Its all about the focus, those little packages of joy are flying by you ever minute of every day you just have to focus on them so you can catch one. Yes, you have to throw it back, but it will be there to catch again. No one can always be happy, or content. Most of us can’t just choose to be happy. However, most of have something positive we can thing about, focus on. It’s much easier to redirect that negative snow ball running down the mountain then it is to stop it or push it back up. we just need to nudge in a different direction every now and then.

We try to put pictures of memories where we can see them through out the day, in our living room, our wallets, purses, etc. These memories becomes part of the background noise so its important that we remember to focus. I think of this as sort of poor man’s meditation, I am not a buddha, or a saint but I can take 20 seconds when I feel terrible to look at picture and remember. It doesn’t always work, but it works often enough that I am eternally grateful to my wife for coming in to my life and giving me these children and our memories.

Focus, focus, focus, nobody is perfect every now and then we have to try. With all of the negative snow balls running down the mountain increasing the risk of an avalanche we have to do what we can to make it better. Start by making some new memories to focus on.

In a time when our world feels like an avalanche everything we do matters. Its not where we are that’s important its where we are going, and nothing reminds us of that better then beautiful memories of times with our children and families. At the end of the day what else really matters?

Sean Adelman is an orthopedic surgeon who lives in Seattle Washington with his wife, three children and two dogs. Sean has served in the Air Force and is currently in practice in Seattle. He loves running obstacle races with his children, playing guitar, and writing. Sean’s middle child has Down Syndrome which is what began his journey of becoming an author and an advocate for disability rights, inclusion and acceptance. “My greatest joys in life have been times spent with my family.”

Inclusion, Be a Better Hobbit

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Wile riding my bike to work this morning I had one of those life changing moments when someone tried to run me off the rode then honked their horn at me as they did so. I was in there way and they were probably late for work. This wasn’t some masked stranger but a neighbor who probably didn’t recognize me.

After my anger subsided I realized something. The person who ran me off the road was someone who drove a fuel efficient car, gave to the school, and probably went to church. Yet, When it came to getting to work they were willing to put my life in danger? As I approached work I was reminded of my adventure to the ” Hobbit ” with my family the day prior. As Gandalf tried to explain why he chose this little hobbit for such a pivotal role in their adventure he said:”I found it is the small everyday deeds of ordinary folk that keep the darkness at bay.”
At the time I didn’t think too much about the exchange, but the events of my day brought it to light. Every simple kindness, every thank you, gratitude, they are ripples in the ocean that turn into waves. Opening that door, smiling, giving praise, these simple things build us up and come from our heart. Being a better hobbit doesn’t cost anything, except, maybe, thirty seconds of our day to be considerate of others. Keeping up appearances does not stave off evil, or make us better, more earnest, human beings. The daily struggle to be happy, to think of others takes energy, but it also gives back. When you smile and say thank and it’s returned your battery is recharged, you become lighter on your feet and ready to move on.

When we think of inclusion we think of just the special kids and forget we are all different and that the small kindnesses we give each other all small microcosms of inclusion. Find me a better movie that touts the benefits of inclusion more then the Hobbit and the Lord of the Rings. A small “half ling” joins a band of dwarfs who don’t have a home with a large wizard. They are eventually joined by humans and elves. All these beings are very different and it’s only as they get to know each other do they discover that through all their differences these pieces make a whole and they fit together like a beautiful puzzle.

As we strive to get though each day think not of how you can make the world a better place, just be nice. Raise the bar for humanity by being a normal person who thinks of others. The simple things do matter, and they matter most when we are at our lowest.

Sean Adelman is an orthopedic surgeon who lives in Seattle Washington with his wife, three children and two dogs. Sean has served in the Air Force and is currently in practice in Seattle. He loves running obstacle races with his children, playing guitar, and writing. Sean’s middle child has Down Syndrome which is what began his journey of becoming an author and an advocate for disability rights, inclusion and acceptance. “My greatest joys in life have been times spent with my family.”

Be True to Your Character

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In a perfect story you fall in love with the characters. Sometimes you hate them or maybe just identify with them. In a great story you fall into it and loose track of time as the world around you becomes what you are reading. A huge part of becoming engrossed in a novel is the story, but it is also the characters. If you don’t like someone you are reading about you loose interest in what happens to them and thus the story. When writing a story I always strive to create people I can see, here, almost touch. The more real they are to me the, the more thoroughly they can interact int the story. Not only is a good character crucial to the telling of the story, but a good character will help drive the story. Knowing that someone would or would not do something help define where you go with the plot. Although plot twists are an integral part of any tale if you have someone do something that is out of character the readers will know its wrong and feel or act accordingly.

Much of what I write about has to do with different physical and intellectual disabilities. Although I write fiction, my mission is to raise awareness for different people so that they can be seen in a light that is representative of who they really are. How people with different abilities see themselves is something that I strive to help represent. We all go through life with an image of who we think we are. Sometimes how we see ourselves isn’t obvious to those around us. How we look, act and talk can create an impression however true or untrue that says something about us. What if you were born in a way that would always make you talk a little different, or act a little different or even look a little different. Inside, you felt a certain way that only you would know, unless you got to know someone, and they got to know you. Even worse, what if no one wanted to bother even getting to know you because of those things. You would live your life in a bubble of inconsistencies that you could never overcome. Research has shown definitively that how those around us treat us can impact what we are able to accomplish. If no one thinks you can accomplish something, the chances are much greater that you will not be able to.

So, defeating preconceived notions is part of creating a great character. Allowing a reader to see inside someone in a way that they may have never had the opportunity otherwise is a gift. Through story I can allow the reader to see inside the thoughts of someone and see how they react to other around them. Being able to read what is happening to someone who is being mistreated or misjudged can be very powerful. The proverbial “walk a mile in another man’s shoes” is a superpower we, as writers, can accomplish.

The great difficulty in creating a “true” character when dealing with someone who is different or has a disability is that you want it to be honest, but not stereotypical. You can’t just throw in features or mannerisms and feel like you are representing a kid with Down Syndrome, or Autism. When writing a character that you want to critically represent you not only have to talk about the obvious things but research the details. Talk with families and caregivers who know, and have experience, text books and the internet cannot adequately represent.

Before creating the character establish what it is you are trying to accomplish so that the character fits in the story in a way that is true to the nature of the story as well as the character themselves. Writing a fun story only to thrown in a token disabled kid is just as damaging as misrepresenting them. The best way to do this is make sure the character fits by talking with people who know. Even if you think you know, ask, never assume that because you are a father, or a mother or a friend that you know, ask.
Edit, edit, edit…. One of the hardest things about writing is the editing. This is particularly true when representing differently abled characters. You have to do the research, on line, in the library, friends and family. Just like every other story you have to have someone else read it. When you are trying to truthfully represent a character like this you have to have someone with the different ability, if possible, or their family part of the process.

Writing a great story is a superpower and in the words of famous moms everywhere “use your powers for good, not evil”.

Sean Adelman is an orthopedic surgeon who lives in Seattle Washington with his wife, three children and two dogs. Sean has served in the Air Force and is currently in practice in Seattle. He loves running obstacle races with his children, playing guitar, and writing. Sean’s middle child has Down Syndrome which is what began his journey of becoming an author and an advocate for disability rights, inclusion and acceptance. “My greatest joys in life have been times spent with my family.”

Disenfranchised

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My daughter, Devon, who is now 20 years old was able to vote in her first election this year. Devon has always been treated like her siblings and raised to be independent. There will always be some things that are harder for her. Despite the fact that she has Down syndrome, she is in charge of her own life and is most frustrated when people have low expectations of her.

Devon has followed the election closely reviewing the candidates and talking to us and her friends. Early this year she decided emphatically that she would support Hilary Clinton because Secretary Clinton seemed to emphasize the issues that were important to her.

As we all know the election did not turn out as planned. Hillary lost, but instead of being devastated we talked about US politics and how Devon’s words could be used. Devon wanted to make a statement about the world as we saw it and what she expected in a president. Devon is an amazing public speaker so I agreed to help her craft a letter.

One of the things Devon wanted to say was how she didn’t want to be “forgotten”. She didn’t want the needs of individuals with intellectual disabilities to go unheard, a diverse group of people who are often overlooked and under appreciated.

Devon’s concern wasn’t just for people with intellectual disabilities, it was for all of the people whom she perceived were demeaned through the course of the presidential campaign. Sometimes finding words to describe a very important thought can be very challenging. We often instinctively know what we are trying to say, but the words fail us.

After much discussion we finally came up with a word, “disenfranchised”. We knew it was the word we wanted, especially after researching what it really meant. Our research included a dictionary and a google search, then a history lesson.

Disenfranchised, when a marginalized group is deprived of rights. We talked about the history of women getting the right to vote and what it means to be marginalized. There are many groups in our country who have felt marginalized based on their race, sex, religion or orientation. One word that marked history for so many helped Devon understand why her words are important and that irregardless of the outcome, her vote is important.

Please take a moment to watch Devon’s words

 

Sean Adelman is an orthopedic surgeon who lives in Seattle Washington with his wife, three children and two dogs. Sean has served in the Air Force and is currently in practice in Seattle. He loves running obstacle races with his children, playing guitar, and writing. Sean’s middle child has Down Syndrome which is what began his journey of becoming an author and an advocate for disability rights, inclusion and acceptance. “My greatest joys in life have been times spent with my family.”

Eximius

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What if?

What if humanity was going to be judged through the eyes and hearts of our most disenfranchised?

What if the court of humanity’s future was to be held in was a special education classroom?

Fortis is a descendant of a powerful race called the Vigilum. They have been tasked with policing the Galaxy for many generations. Fortis has been chosen for the most important assignment of his career. Earth, a fertile planet with a young civilization is on the brink of interstellar travel. Humanity may be too volatile to be welcomed into the Pacem Coalition.

Happy, who has Down Syndrome, is to be Fortis’s guide to humanity. Happy and her friends will learn that Down Syndrome, Autism, and Cerebral palsy does not make them powerless. Great power comes from within and great heart allows you to wield great power with responsibility and conviction. Fortis will judge humanity through the lens of a special education classroom.

What the Vigilium and Fortis don’t know is that another race has their eye on Earth. The Anguis are a race of nomads with no planet to call home since they have destroyed their own. The Anguis know that the Earth is being judged and that if Earth fails the Vigilium will not protect them. The Anguis are dark creatures who can manipulate humans and their goal is to manipulate humanity to their own destruction.

Be prepared to be drawn into a story that will redefine how you think about superheroes. Nothing worthwhile comes easy and no one knows that better then Happy and her friends. Can they help save the world and convince the Vigilum that humanity is worth saving?

Sean Adelman is an orthopedic surgeon who lives in Seattle Washington with his wife, three children and two dogs. Sean has served in the Air Force and is currently in practice in Seattle. He loves running obstacle races with his children, playing guitar, and writing. Sean’s middle child has Down Syndrome which is what began his journey of becoming an author and an advocate for disability rights, inclusion and acceptance. “My greatest joys in life have been times spent with my family.”