Wednesday, November 23, 2016

grateful

We will all have many teachers throughout our life. Some of them come in human form, and some come in the form of regular old life. The greatest of teachers come around and challenge our own assumptions about what we know and believe.

Strangely, autism is one of the most painful, yet greatest teachers I've encountered. It's challenged my assumptions about almost everything in the world, and the people in it. It's challenged what I thought it meant to have special needs. About what I thought it meant to love unconditionally. About what I thought it meant to be a friend. About what I thought it meant to be different. To really and truly be so incredibly different. About what I thought it meant to fail. About what really and truly matters most to me in the world.

I've started to realize, before autism, I had so much of it wrong. (Life). I still get it wrong sometimes (a lot) so I come here to write and breathe and remember. Through all of it, my incorrect assumptions fall to the ground and shatter like dust, and I feel as real as the skin horse explains in The Velveteen Rabbit.

{Real isn't how you are made, it's a thing that happens to you. Sometimes it hurts, but when you are Real you don't mind being hurt.} the velveteen rabbit


One day, one lesson, one journey at a time, Real is something that happens to us. And that is how we do life. We are all just figuring this thing out. Each lesson - especially the ones that pull and push at us, pain us, confuse us- is a prayer towards letting go and becoming Real. This Thanksgiving I am taking a moment to breathe and actually feel gratitude for the many, many gifts I've been given. Life doesn't ever really slow down, so instead we must- and focus on what truly means the most to us.


I am so grateful for different. Don't get me wrong, I'm CRAZY about same. We ache for same, despite knowing that it holds no key to becoming who we are. I want to be who I am meant to be. Without the fear, or self conscienceness that sometimes whispers- Stop. Same can be comforting, yes, but never challenging, never growing, never expanding. Same has never softened my heart. It has never made me cry at the enormity of life. It has never made me stretch my fingers further than I knew I could. I am so grateful for the different infused into my life.


I am also grateful for incomplete. Oh man, the oceans of incomplete that covers our lives. Houses, and to do lists, and what I want and need to accomplish. Here we all are, smack dab in the middle of incomplete.  I would be so happy, if I could only have... is the beginning of a sentence that is always a lie. We do it in big ways and in small. (I would be so happy if he could really talk. I would be so happy if my bangs would freaking grow out already.) The truth that no one tells you is- we actually can wait for happy. We can wait as long as we want, and as long as our patience allows. And what a waste that is. We can also choose to NOT wait for happy. There is always a thing, a phase, a moment we can't wait to pass us by. It will pass, of that I am certain. And then it will be replaced by something else, because that's how life goes. But there is also always, happy hanging on the lowest limb, waiting for us to pick it.


I am grateful for authentic people who tell the truth. People who can express themselves. People who challenge status quo. People who can say and think- This isn't right for me. This does not fit my dimensions of who I believe I am. The truths about my real, true self that I believe in and the character traits I pride myself on possessing. We are together in our aloneness. We don't believe in automatic existences. We don't accept status quo. We fight the whisper of society and community and history and sometimes even family that says- THIS is how things are. THIS is how things should be. THIS is how you should be.

And we lie to ourselves too. I should be this kind of (daughter, Christian, sister, employee, mother, father, neighbor...) The nouns can go on forever. We should just be, really. We need to learn to just be, and own it.


Life isn't easy, yet there is so much to be grateful for. Everyday we get out there and try again. And sometimes we fail, we do it wrong. But sometimes we shine. We feel it, that hum of living on purpose. That is authentic living. Why would we strive for anything else?

This Thanksgiving season I am grateful for YOU. Yes, you. Thank you for loving, praying, and caring about our story. Humankind is such a beautiful thing.

Love,
Greyson + Parker's Mom - Chrissy



Thursday, November 10, 2016

I will not teach hate

About a month ago, we began using a communication device to help Greyson learn to speak, as well as communicate his current needs. Because he has apraxia- his brain and his mouth don't always communicate, and sometimes the words come out jumbled. There is no greater pain in life than to be misunderstood. I've been working to fully program and customize the program he is using (Proloquo2Go), selecting which words to include, and which to exclude based on the things I believe Greyson would like to communicate about.

When I got to the "Feelings" folder, suddenly it became so crazy clear. The world stopped and I could hear buzzing in my ears, Hate is something that must be taught. And that realization became frightening and freeing all at once. I almost didn't even want to include the button as an option.


Hate is not innate. We are not born with it. We have no definition or capacity for it as a baby. Interest, distress and disgust are the the only three emotions most researchers agree are present at birth. While it's tempting to ascribe grown-up feelings and motivations to even very young babies, there are huge differences between adult and baby emotions simply because emotions are tied to cognitive and physical development. Since babies haven't yet gained the experience that adults have, they are unable to experience emotions in quite the same way.

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Out of all of the emotions that you see here, only love and hate are verbs. That's why they are green. Verbs require action. They take our energy, and require something from us. The rest listed are simply adjectives used to describe. Just as they are options on this screen, love and hate are selections we can make in real life too. And the older I get, the more I realize that hate takes so much more out of me than love.



Learning in our house looks very different because my two boys have autism. They must learn everything about the world in tiny, pared down steps. Things that typically developing kids pick up from the environment. How to respond yes. What prepositions like on, next to, behind, under and on top look like in a variety of controlled situations in a structured environment. What it means to be empty or full. How to sequence a series of events to make sense of the world. All of it, painstaking broken down and taught, data is kept, skills begin to emerge and finally, they are mastered. After being taught in a structured and controlled environment, they then learn how to apply that knowledge to the outside world and the people in it. That truck is red. That box is empty. That book is on top of the table.



As I was programming Greyson's communication device I realized the great power we as parents have in teaching our children. I felt a grave responsibility as I programmed in the worlds he will have access to and use for his lifetime. For the most part, if it is not specially taught to him, he will not learn it. (Expect for nose picking. Ugh. SOMEHOW both boys learned that skill all on their own.) I realized, our children are truly, truly what we show them. What they see over and over again. Even less than what we say, our children are what we teach them by doing. And like ABA- it is first learned in the house and then generalized to the outside world. 



When it comes to parenting, many of us can talk a good game. But what's really important- can we live that same good game out loud? Can we try our best? Can we defend our principles kindly? Can we love people who are different than us? Can we make decisions with a morale and ethical compass? Can we do the right thing, even when it's the hard thing to do? Can we stick up for what's right, without tearing another down? I will not program hate words into my son's communication device, any more than I will show them with my own actions and words.



Whatever is the question, the answer is often love. Especially if the question is fear or hate.



Today my oldest son, Greyson, had a jog-a-thon at his school honoring first responders, veterans and active duty servicemen and women. There was a sea of children, framed by heroes in uniform. Greyson and I began to walk a lap around the field as I soaked up the stimulating environment. There were squeals of delight by the classmates watching Grey's class walk by- a constant cheer that filled the air with vibration. I could hear the music over the loud speaker that filled my chest with a hum. The golden sunlight was peaking through the trees just right, and I knew I was in a place of magic.  We walked behind a highway patrol man holding hands with one of my favorite little guys who was bopping to the music and wearing a smile so big it filled up the whole outside. The children that were surrounding us as we walked by, were awestruck with admiration for the officer in front of me. With eyebrows raised high in anticipation, they wiggled their arms out, desperate for a high five. 

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They were desperate to be seen, something even grown ups crave, yet have trouble admitting. And that officer saw them, and he too, in exchange was seen. Feeling seen for the greatest parts of who we are, is one of the best feelings in the world. It helps us feel understood.


My eyes, thankfully blocked by my sunglasses, instantly filled with tears that I had to work hard to blink back. I had tears for the joy and admiration these kids felt in the purest of forms. Tears for the bullet proof vests I saw on many officers, which is their day to day reality, due to their calling to protect and serve the communities we live in. They go to work understanding that people want to kill them. Their family kisses them goodbye, with a painful and constant pestering thought- that this could be our last goodbye. Tears for this feeling of community, and love- that these first responders are part of our village, and their jobs require skills and resilience that I can't truly fathom. I wish I could have thanked them up close, but my feelings were bubbling near the surface and I had to contain them as to not simply overflow. It was all too much and just right. 



There was so much love in the air, it was impossible for my mind to comprehend that these same officers that are being gazed up at like rock stars are also the target for so much hate. In the sequence of life events, where did it all go so wrong?

I will not teach hate because of a few bad cops and a few bad criminals. I will not teach hate if your basic life choices are different from mine. I will not teach hate if you want to marry your same sex spouse. I will not teach hate if your political views do not line up with mine. I will not teach hate, even if you hate me. And even if you don't return your damn cart to the cart corral at the grocery store- I will not teach hate.



I won't program in awful words in my son's device, but more importantly- I will not teach my precious boys with my own words or actions. I will teach about kindness and love and having a sense of humor when things turn to shit. I will teach them about resilience and sacrifice, compromise and understanding. I will teach them how good it feels to love other people and to appreciate the gifts they bring. I will also show them I am human, imperfect and make frequent mistakes. I will teach them that how you react and recover is oftentimes more important than the mistake. 



Before the event even began, Greyson's eyes instantly saw a glorious, red and silver fire truck, and it was all he could think about. Before we even took our first lap, Grey did not want to do the jog portion of the jog-a-thon, because he just wanted to be near that truck. Fire truck, fire truck, fire truck- he told me over and over and seriously 1,000 times, over again. First walk, then fire truck, I responded, one million and eleventy hundred times. And as we approached our second lap, we hear the shiny red engine roar, and then see it begin to drive away. Surely it's just parking somewhere more convenient, I thought to myself. I see it drive through the field and into the parking lot, quickly approaching the exit gate.

Greyson starts to cry a loud, eyes wide in terror, type cry. Fire truck, fire truck, fire truck! He yelled urgently through his tears and pleading to me with his eyes.


My heart began to pound. For the previous 30 minutes straight,  I offered my son a prize he completely earned, that didn't exit. The loud noises, the music, the crowds, the change of schedule- all things that are a huge challenge to him- he endured for the silver lining of the fire truck. 


And it was leaving.


So we take off. Greyson, his aid and I, running like we are being chased by a bear. I run like if I go fast enough, I can stop Greyson's heart break, knowing there was no way we were going to catch them. I need him to see that truck more than I've needed anything in a long time.

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Greyson as the fire truck drove away.



We caught the tail end, and I hoped just seeing it for a second would be a good consolation prize. But it wasn't. It wasn't the goods that were promised. 

And suddenly, slowly I see a fireman guiding the truck through the gate, and he saw us too. And they stop the truck, and graciously invite Greyson inside, despite the fact that they had somewhere to be. My heart felt like the top of a roller coaster and my eyes again threaten to overflow. 
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Love and kindness was all around us, and it felt like a magical, shiny red fire truck, three gracious Firemen,a field full of clear slate children, and the happiness of one little boy. 


It's a scary world out there, and it's so easy to become discouraged.  But love feels so much better than hate. Anytime I feel overwhelmed by the bad, the world always shows itself to me. The world that is built on a foundation of love. Love that is everywhere. We just have to be willing to look, and if need be, make a run for it. 

Tuesday, November 1, 2016

commentary on life

Time is a school where we go to learn. It heals, sometimes. And drags sometimes. That same time gives us whiplash it goes so fast. And makes us into the me we were always meant to be.


I used to love to watch the directors commentary on my favorite DVDs. I found them as riveting as the movie itself. I wanted to know all the things. Why the director chose that particular shot. What happened right before that scene. The funny thing the actor did during a take that didn't make the final cut. All the details on the reasoning and process, as well as the emotions that glued it all together. The behind the scenes is my favorite perspective. I recently realized I liked those commentaries so much because that's how I live my life. I share my feelings on why I think this way. How I really feel about things. What makes me feel scared or intimidated. What I first felt when I met you. Questions, thoughts, ideas I have flow out, without question. And that's how I get to know people too. Let's put the bullshit aside and just be human together- k?


But some days it feels naked. To be constantly sharing the directors commentary when everyone else just shares the finished and edited DVD.



The other day I told my friend, Wendy- "Ugh- I'm stuck on a loop over something I said. Do I really need to share every thought I have right when I have it?" (And yes, I do this a lot). (And yes, I then perseverate over doing it for a day or two.)


She responded instantly and clearly, "Really, is there any other way to live?" She posed it like a question but I knew she meant it as a statement. And I remembered it's all OK, and this here is EXACTLY how I need to live because it's what I love about others, so that must mean something. "Thanks for giving me permission to be myself", I told her. It's truly the best gift to give and get.


Telling our own truths is so freeing. I don't do well bottled up. My blessing and my curse. Here I am- all of it- that is how I do life. And I let my truths scatter to the ground like marbles. Shooting in too many directions to pay attention to. Too many to gather up and put the same again- just out there. And most of the world has their marbles kept nicely in a bag. They keep their marbles private. Everyone has their struggle, we say, which is true. But most people keep them hidden. And if that's what feels right- well then, that's ok too.



A couple of months ago I was chatting with my girlfriends on our annual weekend getaway girl trip. Laughing and eating and shopping with my village. Somehow we started talking about how often as women, we are conditioned to be fine, to accept what we get and to not complain. God made me this unique combination of a deep need to tell the truth, to speak freely and directly even when it's uncomfortable, but by all means- to not be confrontational at all. Which is sometimes impossible, so I end up crossing some of my own lines. It creates a tsunami of anxiety inside me- when I either ignore my voice, or when I feel like I'm being too much. So what am I to do when my opinion is in fact- not status quo? Status quo was my bar, which isn't low. But isn't great. Don't stand out, for good or for bad it whispers. Sometimes I'm just so tired of all the rules.



I remember a massage I had, back when Greyson was a new baby. I was nursing and squishy and hormonal and my body ached and I let the masseuse know. She had the perfect plan, she claimed. She had me flip over with my back against the table, and she pulled the sheet down to expose my stomach. My whole body tensed- what in the hell is she doing?!, I wondered. It was traumatic. I put my hands over my exposed, large, leaky floppy super asymmetrical boobs. She gave me a tiny hand towel to cover my parts and she started to massage my stomach and rib area to help everything move back to where it was supposed to be after pregnancy. I was horrified. And not relaxed. The opposite in fact- HIGH ALERT- what the hell is she doing?! My fists were clenched and my heart pounded.


And do you know what I did? I just laid there. And for at least ten that felt like a million minutes she rubbed my stomach. And when the massage was over, I thanked her, and said- Yes, that was great when she asked, "How was it?" And then I tipped her- the same I would tip someone who was good. What the hell is that? Where does that come from? There's a fine line between being laid back and flexible and stuffing your truth down deep inside.



I don't really know. But the older I get, the more I am trying to say, "This is not OK". I get lots of practise doing this as a Mom because I tell myself- you must speak up for them, even when it's uncomfortable. We are allowed to be unhappy. We are allowed to expect more. We are allowed to be disappointed. We are allowed to say, "stop" and "don't" and "I don't like". We are allowed to express our wants, our anger, our opinions. They matter.



I see this so often with women. She goes from figuring herself out- to talking care of others. Maybe a boyfriend or girlfriend. Maybe a job. Maybe children. Maybe marriage. We pour it all in, until we don't know quite who we are anymore.


I envision a nightmare, "Do you like tomatoes?" Someone asks. I don't know, she says, turning to her husband. "Do I like tomatoes?"



It's so easy to forget who we are. And instead, present to the world- who we think we were SUPPOSED to become. We present who we think "they" expect us to be. And often times, the self we are and the self we project are not even close to being the same person. We split ourself right down the middle, and it hurts. And we may just keep doing it so much that we truly don't know what we like anymore. We don't know if we like tomatoes. We don't know who we are anymore. We think we are not allowed to not be fine.  Or, if it happens to us too young- we really stop having opinions and dreams and wants all together.



That kind of friction leaves a mark. Where we are either constantly pained and silenced. We wait for that cue from society to give us permission to feel and think and do and be.



But really, we are so much more than who we think we are supposed to be. I adore the people who unapologetically wear their personality on their sleeves. People who admit that they have their shit- but they own it. People who express their truest thoughts, fears, stories and hope- KINDLY.

The bigger the divide between our social self and our real true self - the harder life becomes. The more we tell our self that our real self is not worthy of the world. They are not right. They are too screwed up. Maybe they cuss too much. Perhaps we feel they are just too flawed. So we start to create this parallel existence, creating a person who isn't too much, or who is just enough. Someone less complicated, or more creative, or gets everything right and doesn't ask for help.

The only thing harder than being yourself, is pretending to be someone else. Someone who you faultily assume is better, and more appropriate for the world. It's really hard to pretend to be who you are pretending to be. And whomever that is- I guarantee they suck compared to you. I know, because I often try to be a quieter, less curious, less intense, less expressive, more together version of myself. I am exceptionally awful at it. As I grow up, I am learning my true voice. Boy is it scary to use it sometimes. And every day I just show up and and do me. And me is very inquisitive and talks too much and often mistakenly says things out loud that apparently the rest of the world already knows you are just supposed to think.



We are concentrated, in a land where most become diluted. We must not become diluted. What a waste of the glory of who we were meant to be. And all the traits we possess define us, guide us, keep us real. We have nothing to hide, nothing to prove. So many life experiences went into the way we are now, some painful, some beautiful, most in between. Our story is what makes us great. And so often, the things we may see as flaws are things that others love most about us. We are beautiful, just the way we are. I don't know about you, but I'm trying desperately to love myself they way I am. Even if she doesn't always speak her mind. Even if she always speaks her heart.

One of my favorite quotes, ever...

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And I'll leave you with a few pictures of Greyson and Parker at the Pumpkin Patch last weekend. They are my role models for being amazing at being exactly who they are. Kids are amazing that way- until the world jumps in and tells them otherwise.

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Thanks for sharing this space with me. I love you exactly the way you are.

Chrissy