Robert "Ethan" Saylor

I do not want this young man, who died for no reason, to be overlooked because society doesn't deem him valuable.

ABC Virginia news story says when speaking of the autopsy of Ethan: "The report said Saylor had a reported medical history of anger issues, especially when confronted or touched."  This is true of most people I think. If you confront me and touch me and I do not know you or what the fuck you're up to, I am not going to respond nicely. I might just swear and resist your attempts to physically move me also. Should I be killed for that? Should you? So, does this statement indicate that Ethan was the problem, or that the approach was ineffective and unnecessarily inflammatory? 
"Saylor didn't like being touched, particularly by strangers." Yeah, neither do I, and I teach my kids that it isn't okay for strangers to touch them either. Aren't we supposed to do that? Did I miss something? If a stranger is in uniform, it doesn't automatically make them safe. I'm not going to bash priests, but I think there is a lesson there. ABSOLUTELY NOBODY should touch you in a way that makes you feel threatened or scared. 
"Police have said Saylor, ..., yelled and cursed at the deputies after they confronted him..." hmmm...so this indeed indicates an immediate confrontation with no attempt at conversation...he reacted .
"The deputies then handcuffed Saylor, using three sets to accommodate his girth" Shouldn't have gotten to this point, it didn't have to. 

"The autopsy found that Saylor's developmental disability, obesity, atherosclerotic cardiovascular disease and a heart abnormality contributed to this death."

How did his developmental disability contribute to his death? I'm truly curious..is it because he didn't have the capacity to understand who those men were or what exactly they were trying to do to him? Yes, it is a fact that approximately 50% of people with Down syndrome have heart conditions, but they mentioned that separately. It is also known that they are more likely to be overweight/ obese....also listed separately. So, other than the inability to effectively communicate with the confrontational off-duty officers...how exactly did his Down syndrome contribute to his death? African-Americans are 30% more likely to die from heart disease, as compared to non-Hispanic white men If he was African-American, would his race have been listed as a contributing factor to his death?

""One of the options they had was to simply tell the theater manager, 'We're just simply not going to deal with this.'"

I don't think this has to be the answer either, I believe there is a common ground, but it requires being patient first and foremost, and second to be respectful toward people even when they are different. Don't we teach our kids to communicate? Shouldn't we model that behavior for them? I still don't get where his aide was and what the length of time was that had passed from when she left his side initially to when he wound up dead. 

I don't think the cops did this to him on purpose. I do think that someone who is large and has an obvious intellectual disability freaks some people out. Fear is never a good launch point for any action unless it's for immediate self defense. There's a lot of holes in the story, a lot I don't understand. What I do understand is that a mom lost her son over a 12 dollar movie ticket. 3 police men, an aide and a movie theater employee have had their lives turned upside down over a 12 dollar movie ticket. I don't feel bad for them...but I simply wonder if they see the situation differently now that it's happened (I hope so). Perhaps they'll be willing to offer suggestions for better training and more effective approach methods. Robert Ethan Saylor could be anyone's child. Many autistic people do not have the distinguishing facial features of people with Down syndrome. People with paranoid schizophrenia also do not have distinguishing facial features. Alzheimer's/ dementia...would they have done this to an old lady? These are conditions in which people are more likely to become confused and aggressive if someone puts their hands on them and tells them they have to do something in a loud and demanding voice. (Although, I still think that is just a typical human response.) Do we want to escalate minor situations by charging in forcefully? 

I can only hope some sort of learning comes out of this...I can't stomach the thought of him dying over a lousy movie ticket price.

World Down Syndrome Day

Public Service Announcement: I will be using some 'swear-words'....but I won't be using words to marginalize humans.

I can't help wonder why on Earth we need an awareness day for people. Why don't we just know to treat all people with respect without having to have their subtle and not-so-subtle differences explained to us? What the fuck?....really.

So, March 21st is World Down Syndrome Day, a day to raise awareness about people with Down syndrome. It's date, 3/21 is a clever play on the fact that Down syndrome is diagnosed with a karyotype which shows a third copy of Chromosome 21. It's a newer thing...as are most awareness days. I think the heart of the founders and supporters are in the right place, and I'm not here to criticize them.  I'm here to question why in a "civilized" society awareness is necessary, and seemingly a pre-requisite to acceptance.

Is there anyone who is unaware what Down syndrome is??? Or, maybe they're aware but freaked out? feel like they have to somehow rearrange who they are because the person looking back at them isn't just like them? I don't know...maybe I'm not being fair, but it's what I sense sometimes when I'm out with Gemma.

People learn this when they are young.  My 7 year old is still trying to sort out what it means for his little sister to have Ds, he said, "Mom, do NOT eat mandarin oranges or they will make you puke." "What?" I said, "Gemma eats them every day and doesn't puke, they are her favorite." His reply was, "Gemma can eat them without puking because she has Down syndrome." ...at least he thinks it's a super power. 

Now, is it me or does every day of the year have a significance to one group of people or another? I have two concerns with this: First, there are just too many days to keep track of. Since every day, week or month is dedicated to something, nobody outside of the target group pays attention to them anymore. Second, every day is a day for me to advocate for acceptance and inclusion for my daughter who happens to have an extra chromosome, and others who have the same distinction. Yes, that is what I will fight for...but I will also fight for humanity as a whole...because isn't that what all groups have in common? A desire to be treated with dignity and respect?

Because this is important to me, I will do my best with what I have and what I know. What could be more important? Well, doesn't that depend who you ask? 

Isn't it shocking that there is a word that can cut down almost anyone? Don't be too smart or too stupid or you'll be called on it. Don't be too black or too white. Don't be too tall or too short. Don't be too rich or too poor. Too pretty or too ugly. Don't sleep around (applies primarily to those who have a vagina)...but I don't know where some people think all those penises would go since they also disapprove more of male to male sex than they do of female to female sex. Don't be gay, don't be bi, don't be a prude or uptight. Don't be mean and selfish, but don't be a door mat and stand up for yourself. (fer fuck's sake) ?? what?? Don't be a loser, don't be a jock, don't be a cheerleader, don't be a show-off, don't be proud of your accomplishments, don't be a burn out, don't be a drop out, don't be too fat and don't be too thin. If you're sick it's your fault, if you're too healthy you're a nut. Just sit down, shut up, stay distracted and regurgitate what you are told without asking questions. Is it any wonder depression rates are through the roof? 

Screech...sorry for the tangent, but what I'd really like to see on Down syndrome day is a promise that the moms and dads and families of people living with Ds won't have to fight so hard for inclusion when it is already supposed to be a given in the schools and communities. I'd like people to stop looking at others who are different from themselves as 'scary'. Because it really isn't only about Ds, it's about all of us...it's about humanity. We are not owed an explanation before we decide to be patient with someone and treat them with respect. We shouldn't stick people in a box and make assumptions based on the outer packaging of their heart. 

So what do we do? We have days of awareness, we have walks, we talk, we reach out and spread the word. We keep picking away at the walls that have been built up around our children and the people we love. The walls are getting weak, they will come down. We continue to fight for inclusion. I think it is vitally important in schools because that is one of our earliest institutions of socialization. Don't put the kids with different abilities all in a room together and make the general student body think something must be very concerning about them. Allow them to be together, make friends and realize that differences are part of being human.

I apologize now that this didn't wind up being an awful lot about Ds day and 'awareness', but I just am not capable of thinking of my daughter as an island...separate from the rest of society and the people who make it up. So it is more of a day to talk about acceptance and inclusion of anyone who doesn't fit in that truly narrow margin that would qualify them as 'normal'. 

“Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen.” Ephesians 4:29

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Chaos vs Serenity

So I thought I'd attempt this free write. Why? For one, I'm a great reader, but a wretched writer. For two, yesterday was Tuesday and I saw Heather's blog about trying this. Unedited, ...maybe I'll get through it and actually hit publish? I meant to do this yesterday; then I could just post it to her site and there it would be, out in the open...no time to take it back.
I have kids, so what I wanted to do yesterday, I'm doing tonight while they're mostly in bed, except the 18 year old who is scurrying to finish her homework because grades are closing. I also have a daughter who will be 2 in 2 weeks, and a son who is 7 and acts like an 80 year old with ADHD. (I'm not sure if that happens, but if it did I'm sure it would look like Brendan.)
So, my title here is loosely based on my life...which usually feels chaotic. I have control issues, I know it's pointless and futile and harmful to my own sanity....but it doesn't make it go away. Now I'm reading a book by Pema Chodron about accepting uncertainty...I'm pretty sure she wrote it with me in mind. Trying to control the uncontrollable, looking for safety and predictability. LOL...even as I admit it I know how crazy it is. I'm going to try to recognize the moods, box them up and let them sit in the corner. More to come later on my journey down that path.
I blame my kids...in a good way, but they have taught me that someone can make me furious and still allow me to maintain my tender side. I'm starting to think they are teaching me more than I'll ever be able to teach them. When my son was born, I was instantly in love, more love than I thought I was even capable of. Up until that point it had really been about me, then wham...he was born and it was all for him. I'd read him books, have thoughts about what a brilliant man he'd grow up to be. I put myself $10,000 in debt just buying stupid shit he didn't really need. Well, then came the divorce when he was 3, we did well though, at least I thought so. I remarried when he was 5 and he had a baby sister. She was born with Down syndrome...we had no idea until she showed us her sweet little face. I loved her just as much as I did her brother, and learned even more.
I learned even more what a dink I can be. At first I cried, I thought she's never going to get married...never going to be a mom, be a doctor, blah blah wah wah wah. Then I realized that she might, and furthermore I realized that my son might not. It will be their journey, I'm here to nurture them, not dictate their hearts and desires. Illusions shattered, but it is liberating in so many ways.
Back to my point, serenity has been borne from chaos, from realizing that I don't know anything and that it's totally okay.

Alice

P.S. I found Heather's blog, E.O. after reading a letter she had written to Vicki which Kelle Hampton had shared. I like the concept of writing and just posting, no matter how much it sounds like gobbeldy guk. :)

Someone finally asked...

Today I went into Rite Aid and when I was checking out the cashier asked to see the baby. (I always put her in a sling when we're out) I showed her and she said, "She is so sweet, does she have 'Downs' ?" I said yes, that she did, and it felt so odd to be asked. Generally either people already know, or they won't say a word, it seems to be like telling someone their fly is open, if you see it you don't want to say so because that person will then think you're staring at their crotch. (Which we all know isn't the case, but somehow you feel like they will think that!) I've wondered all the time if it's obvious or not that she has it, because no one ever says a peep. I guess it really isn't that important anyway, what they see first is a sweet little baby! I did cry on the way back from the store, not sure why, I am grateful she acknowledged it.

I think probably what made me upset is the fact that I'm a worry-wart, and I want people to see Gemma for who she is and not define her by her disability. OK, nap is over...the residual car ride relaxation has worn off and I've got to go get her her oatmeal!

Don't feel bad for us please

I think it's awkward for people when I tell them Gemma has Down syndrome. She's just a baby and I'm not sure it's obvious all the time just by looking at her.... I get a look like...ohhhhhhhh......usually followed by a well intentioned comment of, "I'm sorry, or Are you okay with that?" Well, first, no one has to be sorry, yes she will face some hurdles in her life, but don't we all. She is physically quite healthy, so we are grateful beyond words for that! Yes, we are okay with it. I will admit, I cried for days when I found out, then I started really thinking about what it all means. It is what it is, and in some ways we are very fortunate because there is so much support out there, and so many resources available. No one knows what their child's future holds, I think when your child has any sort of condition that slaps you in the face with that reality early on it makes it just a little harder to swallow. I have learned more about myself in the last 5 months than I every thought possible, and I believe Gemma has been sent here as a true miracle, a gift of love...but now she has lost patience with me not playing with her, so I have to run....

Stigma vs. Reality

So I was thinking about people's reactions when you tell them your baby has Down syndrome, (and probably most any other "problem" your child might have). It's usually followed by an "ooooohhh, sorry, that's too bad..." The thing is, even though they mean well, and probably don't know what else to say, I really don't want anyone to feel bad for Gemma, or anyone else in our family. In truth, I don't even know why I feel it necessary to tell people I know, except I feel if I don't that means I'm in denial or not proud of her as she is. She is a perfect, beautiful little girl, and we all love her and her extra chromosome. Part of my fear and sadness when learning that she did indeed have Down syndrome was that people would always look at her and assume they knew all about her based on the facial characteristics which make it obvious. It is like a scarlet "D". I worried about the future, and how it might be hard for her, how her choices might be limited. What I realize now is that I was an idiot...maybe that's too harsh, but I was certainly ignorant to some things. First thing is, she is very much like a typical baby, she has not been a challenge at all. (at least not more of a challenge than any other baby) Second thing I realized, thanks to some very basic pointed questions from my 5 year old, is that there is nothing she can't accomplish if she wants to. She can still play, have fun and have friends. She is very much thriving on the love she gets here at home. She's smiling, cooing, giggling a little, she loves music and dancing, and she hates being messy. I still worry about her future a little, but I am learning to focus on today and really embrace every moment. No one is promised tomorrow, even those of us with a mere 46 chromosomes. We all want to be happy, and we should all be allowed to define what happy is to us, no matter what "problems" we may have, no matter whether those problems are visible or not. So, I guess my lesson learned is that once the layers of stigma got peeled back, what was left was not nearly as scary as I thought it would be. The reality was more beautiful that I could have ever imagined.

Today...

Our life right now is wonderful. We have 3 children between Aaron and I, Harlie, 17, Brendan, 5 and Gemma who is 3 months...almost 4 months now actually!! Gemma has Down syndrome, but so far is just like any typical baby. So..what's different then? Why blog? Well, I realized that what I thought of as "hopes for a good life" for my children, were actually my expectations of them to fulfill what I considered a good life. What constitutes a good life anyway I asked myself? Is it what society dictates? Do we aim to please others? Is that fulfilling or does it leave us feeling empty and as though we've somehow violated our own soul? A good life, in my opinion, is one that you enjoy living, that is filled with love, and that allows you to feel like you can be true to yourself. My children are not here to validate me or accomplish things I wished I had done. Their life won't necessarily be perfect based solely on the number of chromosomes they have. I love them all so very much, and I accept them as they are. My job is to guide them on the beginning of their life's journey, not to choose their path for them.