Monday, January 9, 2017

you just wait

Many people with autism want to know what to expect, and what is expected from them. Many people without autism want that too. We may just need it to a slightly lesser degree.  I want that so much my brain feels fuzzy and anxious in its absence. 

Oftentimes, from even before conception we are buying, What to Expect When You're Expecting. Thinking that a single book can actually answer such a thing. (That's funny). We buy it anyway though, and it really does answer a lot. Maybe even at least1%. But when it comes to parenthood, there is so much more that is absolutely unexpected.

And if we aren't gathering information from books or the Internet, people are offering it freely.

"You just wait", the sentences start with. And usually whatever comes after that fill in the blank fills me with a renewed sense of dread and fear. You see, I am a control enthusiast, and people like me don't like these confusing and constantly changing variables that we are supposed to just wait to happen at us. A longing for control is adhesively stuck to my bones. I don’t know where it came from and I don't know why it's there, but it has ridden shot gun most of my life. But I'm also an optimist. If a cloud doesn't have a silver lining, I do my best to sew one in. Sometimes I'm an awful seamstress though.

"You just wait until that baby is born", they told my wide eyes and expanding belly. "You will never sleep. Your life will never be the same again." (and you can tell by the way it is said that this is a very very bad thing). "Your body will never be the same. You will never get alone time. Not even to pee." 

And you know what? They were so so right. My first few weeks of parenthood were unbearable. I was so focused on the things that I wished for my son, that I just wasn't. I wasn't a natural. I was a leaky, fluffy emotional wreckage. Sobbing over nothing fitting and exhaustion and breast feeding and isolation. Despite reading ALL the pregnancy books, it all felt so violently unexpected.

"You just wait until they start teething".

"You just wait until they start crawling."

"You just wait until they start walking."

The just waits wouldn't stop. (And PS- it all goes by so fast, so be sure and enjoy every single minute of this torturous waiting and enduring.) So much pressure. So much unexpected. So much fear.

"You just wait until they won't stop talking. They call your name over and over, so many times you go numb to it. "MOM MOM MOM MOM MOM MOM MOM!!!!"

And so I waited. 

And I waited and waited, and still waited some more. My precious baby boy was two, and I was waiting less patiently and more desperately to be called that once. "Mom." I wanted it to happen so I could get annoyed and take it for granted. Because him talking felt like my right.

It didn't come, so we started the Early Intervention process, kicking and screaming (the both of us). Our days were filled with preschool and Speech and Behavior therapy. And autism and developmental delays brought its own criteria of just waits.

"Having a kid with special needs is very hard on your marriage", the classroom Teacher informed me with pity in her eyes after school one day. "Just wait. You and your husband may want to start going to therapy now. And it really causes a lot of resentment in siblings", she said, gesturing towards Parker, the 4 month old younger baby boy strapped on my chest.

Great- my youngest isn't even four months and I am totally screwing him up by an uncontrollable. On top of that she's inferring my developmentally delayed child is a burden on his family, on his siblings, on the world. And I was supposed to just sit here and wait for it.

No wonder I was certain our life was destined for sucktitude. 

"Just wait until they are in school- advocating gets so much harder". 
"Just wait for your first IEP."
"Just wait until the stop sleeping through the night."
"Just wait until you start potty training." 
"Just wait until they hit puberty. It's unbearable."

That's the one I hear all the time now. (All the time.) 

But I'm kind of tired of all the waiting for awfulness to be honest. I have a 7 and 5 year old. Can we just sit and breathe for a few more years please? I can't handle much more than today, and when I try, I can hear myself start to break. Besides, we've made it through so many just waits and we are still alive.

When it comes to autism, or parenting, or life...there is absolutely always a new stage. A just wait to dread. An unexpected that can never ever be thought up or planned for. And if we are new to it, it can be stressful and different and full of additional unexpecteds. It can be hard. 

But sometimes it's so important to stop the waiting and instead ask- Yes, but WHAT ABOUT THE GIFTS? Because no matter the stage, no matter the age- no matter who we are and where we find ourselves- there are always amazing and inspiring gifts waiting to be opened. Don't wait for the gifts at the end of the finish line. They are here waiting for you today.

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And oftentimes they are so glorious they would be impossible to predict or explain. There are so (SO) many just waits that are overflowing with good. Things that are meaningful and edit my life is ways better and smarter than I ever could on my own.

We must share the good just waits, because they exist and when we look back we realize they have been woven throughout our entire history. It's truly that easy to rewrite our story. 

Make a choice to live a life in which you stop waiting, and you instead start living.

"Just wait", I tell beautiful you with the expanding belly. "Gosh, there's nothing more insane and amazing and miraculous than growing an entire human being. It's so good that I can't even explain it without coffee, and legs tucked under me on the sofa, and 1,000 sighs and tear drops and laughs. I don't even remember who I was before I was a mom. Seeing my boys born is the closest I've been to God in my entire life. Just wait, it's so good, you are so lucky."

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I think back to the beginning of my parenthood journey with new eyes. Yes, I was leaky and hormonal and felt so inept and so scared. But I also felt love so big it felt like insanity, and a starving willingness to become good at being a Mom because it was so good and so important. I felt so many good things I never could have expected into being. I felt my knees shake in awe every time he yawned his little baby yawn and stretched with his arms overhead. Awe that I was entrusted with the greatest gift there ever was to receive.

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To breathe their breath feels like living. To watch them grow has expanded my heart and mind in ways unimaginable and unexplainable with words. Whatever stage you find yourself in your life... Just wait. It's going to be so hard, my friend. And scary and make you question if you are enough. (Which you are.) But also, without a single tiny doubt- It's going to be amazing.

And also, after lots of therapy and many long years, they both call me Mom now. And it was so worth the wait. It will happen for you too...just wait.

Much Love,

Thursday, January 5, 2017

2017 in action

A brand new year means new possibility. It can also have a bit of the Mondays feeling though. Time to get back into the chaos and perform. It can mean a lot of pressure to become the perfect version of you and finally get organized or skinny or whatever the hell it is we use to tell ourselves we aren't good enough.

At this time of year, I try and tread lightly. For me, Winter brings a melancholy that would only be weighted down by a list of resolutions. A list of little words yelling, "You are doing this life thing wrong you idiot!" I already have an internal asshole that likes to question what I do and think and say all year round. I call him "Gary". Gary does NOT need a wingman. Gary needs a muzzle.

It's so easy to forget what matters most to us. And it's so hard to live an intention filled life. But I think we all want that. I think somewhere inside, we actually need it. It is my fear that when I die my only regrets will be that I did not live enough, I did not love enough, and I did not focus on the right things. Spiritual guru, Deepak Chopra says, "An intention is a directed impulse of consciousness that contains the seed form of that which you aim to create. Like real seeds, intentions can’t grow if you hold on to them. Only when you release your intentions into the fertile depths of your consciousness can they grow and flourish." So for me, all good thoughts must be born as intentions, and then planted into the world.

And since we are the boss of our own life, it is our job to make sure we create the life we want while simultaneously existing with the things we didn't want to come into our lives. We can't blame those circumstances as an excuse for unhappiness- because we deserve more from our one given life. I don't think we have those challenges to ruin us. No siree- quite the opposite. I believe we have those lessons in order to learn how to be the me we were always meant to be. They can help us focus on what is important, and learn how to let go. Those challenges are lessons we all need, and only in pain can we find true growth. 

This is my fourth year of picking three ideas to guide my words and actions for a new year. When it comes to picking words, here are my rules: 

They must be phrased in the positive (Like a social story! Autism has taught me so much)
They can't come from a place of brokenness (like we are unorganized or fat or a bad wife or human or mom)
They need to be measurable. No- "Be kind," unless we have specific ideas in mind that we want to carry out- answer what does kind look like in action?

See what happens when a Type A tries to come up with some intentions? I LOVE RULES! Unless they are broken. Then I love rewriting rules!!!

So, here are my words for this year.

1. Health: Mental and Physical
2. Writing/Reading/Learning about my craft
3. Gratitude and Gratitude in Action

Health is a big one for me. For awhile there, I put my own physical health on hold while we were in Early Intervention survival mode. Going to the doctor was not preventative, it was to fix what was broken. I didn't go to the dentist for five- yes FIVE years. I was three years late on my mammogram. Last year I started to take care of me better, and it helped me see just how important it is. I got caught up on all my appointments (Mammogram, eye doc, dentist, Endo and more- check check check check!) and I plan to continue treating my health like a priority. This includes working out regularly, and taking a list of supplements in addition to healthyish foods. Sunday-Thursday I'm pretty healthy, and over the weekend I am sooooo not. I need this balance in my life. And I need fat and sugar!!! 

I'm also going to start seeing a therapist just for me. It is my belief that everyone needs a Shrink. I have high anxiety and am prone to depression. Every time I mention this, someone inevitably says, "Oh yes. Moms of kids with autism really need to take care of themselves and go to therapy." While yes, that is true- it also discounts the importance of mental health and the importance of therapy for EVERYONE. It assumes that you are entitled to therapy or anxiety ONLY if you have a kids with super powers. I think it's important to mention this is how I'm wired and has always been a part of me. I was prone to this brain pain way way before kids and way before autism. And to be honest- many of my biggest stressors and ALL of my "The straw that broke the camel's back" usually have nothing to do with autism. 

I intend to work on the book I am writing, "Little Light Bulbs Daily." Here's a synopsis...

Chrissy Kelly’s enviable life – handsome husband, great job, house on the beach, beautiful baby boy, and another one on the way – shatters on impact when her adorable son, Greyson, is diagnosed with autism. And just as she’d gathered up all the pieces again, his younger brother Parker receives the same diagnosis, smashing this meticulous, hyper-organized, Type A mom's world into a million more little pieces.

Little Light Bulbs aims to be the book Chrissy searched for in vain when her world came crashing down. She found countless grieving memoirs, platitudinous “recovery” guides and manuals for living with the disorder. But she never found a book that promised she could laugh again. Little Light Bulbs chronicles the tiniest of realizations that the bottomless well of pain she’s enduring might just help her find herself and find a purpose in her life she didn’t even know was missing.

But Little Light Bulbs isn’t just for the parents of kids on the spectrum. It’s for anyone who’s ever been so scared they didn’t dare dream of being happy again. It’s for anyone who felt so isolated by their fear that they nearly suffocated themselves with grief. It’s for anyone who needs hope and perspective instead of a bulleted list that pretends to fix the unfixable. Chrissy’s raw, vulnerable and honest writing style sanitizes nothing for readers on her journey. It’s going to hurt like hell, but she shows them that, if they tackle it with humor, grace and an open heart, it might just also be amazing.

My youngest, Parker will be starting to go to school soon, and it will give me a little extra time to write. I also want to read books that inspire me, and learn more about how to be a good writer. 

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I believe all the hype that says grateful people are happier people. 

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He is my poster child for happy.

Two psychologists, Dr. Robert A. Emmons of the University of California, Davis, and Dr. Michael E. McCullough of the University of Miami, have done much of the research on gratitude. In one study, they asked all participants to write a few sentences each week, focusing on particular topics.

One group wrote about things they were grateful for that had occurred during the week. A second group wrote about daily irritations or things that had displeased them, and the third wrote about events that had affected them (with no emphasis on them being positive or negative). After 10 weeks, those who wrote about gratitude were more optimistic and felt better about their lives. Surprisingly, they also exercised more and had fewer visits to physicians than those who focused on sources of aggravation.

There's so much Science focusing on the benefit of gratitude.

Sometimes I'll admit though- when you're in the thick of it, sometimes gratitude is the last feeling I am feeling. I want to wallow and kick gratitude in the shins. But I also want to be happy, and live a life with meaning, so gratitude for the win.

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I have a little notebook in my nightstand and every night I am writing down three things I was grateful for that day. They don't have to be big and sweeping, I just have to mean it (Yesterday mine were peanut butter, black pens and Jack the dog.) 

I also intend on carrying out gratitude in action. I am grateful for my community, so I will find ways to contribute to it. I am grateful for being in a position where I can be an autism advocate, not just for my boys but for all kids with autism, so I will continue to help reach the people who may need my 

Writing down your intentions is key in carrying them out. That way we can contribute in big and small ways and hold ourselves accountable. You may even want to buy a new blank notebook. As a little girl I remember my Dad telling me about a 1979 Harvard MBA Study. Interviewers asked graduates about their goals. Of the graduates:

  • 84% had no goals
  • 13% had goals-but only in their head
  • 3% had clear, written goals and plans to accomplish them. 

Ten years later these students were interviewed again. The 13% with goals not committed to paper were earning twice as much as the 84% who had no goals at all. And the 3% with clear, written goals- were earning ten times as much as the other 97% PUT TOGETHER. Pretty amazing-right?

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Who wants to join me and come up with some intentions? Or do you already have some? I'd love for you to share yours with me. Here's to an amazing 2017. May it be a year filled with growth, love and strength.

Much Love,

Wednesday, December 7, 2016

the devil + God is in the details

We live in a world full of so many details. Millions of them everywhere. We live lives full of tiny little details, easy to forget. When someone asks me my address, I usually have to pause and think hard for a good second. How are we supposed to keep track of so many things? And more importantly, how are we supposed to remember which ones are important, and which ones are not?

Being distracted is so much easier than paying attention. Mmm, it's like a hit of sugar. We get to lift to the surface to take a big gulp of air. Being distracted is so much easier, yes, but so much less fulfilling. We miss out on so many of the details. We begin to lose touch with how to even pay attention in the first place. How to notice the details, intimately, curiously. Because sometimes life is so painful and overwhelming and the details can drown us. So we skim and we float and stay distracted. We take a hit of social media to numb out. We keep the tv or radio on constantly to avoid silence which invites thinking. We keep our conversations and relationships on surface level. And we miss out on so many of the details but also some of the pain. 

Our own personal story's are filled with unique and amazing details. They are one of the most intimate things we can share with one another. Pain in is the details, (absolutely), the details that fill us up and threaten to drown us. The details that build up, and we are forced to bear. Beauty is in the details, the ones that beat our heart and give our life purpose. Most people you will meet in life, just choose to float in the middle. The rest is too unpredictable.

I think I like to write so much, because it gives me a home for all the details. Actually, it's more than like. I need to write so much, because because it gives me a home for all the details. I pay close attention to people and the world. I am insatiably curious. I live life deeply alive. Each day is a roller coaster. I am so happy, so excited, so in awe, so mesmerized, so afraid, so sad, my heart aches so big I can feel pain. It can feel too much and so lonely. It's unbearable. It's beautiful. 

Sometimes I am so jealous of the middle coasters. The ones that have the ability to dive down deep into distraction and never ever come out. Sometimes I am so glad to feel so much in a world where it's easier to be numb. Because being alive and feeling and connecting is more important to me than sheltering myself from pain. Because loving my boys so much that it feels like pain sometimes, is the best feeling I've ever known. Becuase the pull of the ocean at your feet- when it sounds like fizzy soda- and a yard full of fire-orange leaves that whirl up into the inviting wind, and the unique patterns when you cut into those purple potatoes- the fact that Greyson's two front teeth are loose and kind of look like Mater, the golden ring around the pupil of Parker's ice blue eyes- all of those kinds of things should be talked about every day. But that isn't safe, so we talk about the weather.

Why are we here on earth if not to feel?

God gave us so many details my friend. They are like personal little gifts of art for us. They wouldn't exist if they weren't important. There's a reason we are all so different, each with different and even the same details that make us up. 

The details are everything. The details unpeel the mundane. They shape the way we see the world. They guide how we love others. They demand to be paid attention to.

My goal lately, has been to simply be aware of the details. To breathe in and out and soak up the details. And the first few minutes I am angstly and unsettled, like I should be doing something productive. Something with a beginning and an end. Something like checking my phone mindlessly, looking for a feeling that isn't in there. And then I ease into it. I shed self awareness and focus on them. The splattering colors of life. My breath in the cold air. The crunch of leaves that carpet the ground.

Details from playing at the park...

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 photo _MG_6200_zpsw3z6cnkz.jpg  photo _MG_6203_zpso7dd3wf7.jpg The details are absolutely everywhere. On purpose, to make you feel.

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Many people with autism, are fascinated by details. It's amazing. Their own flickering fingers are artful delight. They watch how the light reflects through their movement.

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Sometimes it hurts to notice all the details. Sometimes it feels like too much.

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We can take breaks, but we mustn't ever stop paying attention.

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Jackets and bare feet.

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The slick slide and the sound it makes when rubber shoes strike the surface. The glide down when for just a second, it takes your breath away. The details.

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Welcome to the details, for they are your life. Pay attention. It's worth it.

Wednesday, November 23, 2016


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.

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.


Monday, October 17, 2016

That Parent

I'm not exactly sure how I first found out about her

She was called "that parent" and I knew I definitely did not want to be her. She was first mentioned in our intensive Early Intervention program for autism. I felt like a reluctant passenger being driven in a car. I had no idea where we were going. I would just get in and grip the door with white knuckles and hold on tight, while my heart pounded in my ears. I kept my eyes closed and prayed for the moment we arrived to wherever the hell it was we were going. I was a scared momma to a precious 2 year old boy who didn't talk, and clutching another newborn baby boy.

Hearing and language evaluation assessments? OK. Psych evaluation? Are you sure? OK. Stop doing this, start doing that immediately- check and check! Vineland and ADOS, CARS2, and one trillion other assessments and evaluations- OK. They were driving us wherever they said we needed to go, and we believed them because they were the experts.

We would finish our day, go into our home, and peel off all our labels. We would watch TV and play in the back yard and do bath time like we were a regular old family. 

Because we were. I just didn't know that 'regular' could look like this at the time. 

And then I started to learn and pay attention. I realized I didn't need to go everywhere this car was driving us. So instead I would white knuckle grip my own steering wheel, instead of the passenger door handle of life. I became educated on things like autism, developmental delays, sensory processing disorder, severe language disorders, behavior, auditory processing, communication, motor planning disorders and executive function. 

I was no expert on any of these topics, not even close, however, I was an expert on Greyson. The only one in the world, in fact, and my input mattered. 

There was no Special Needs Parent school, so I created my own crappy version, by reading and researching, interviewing professionals and parents, trying and quitting a million new things. It's crappy because it never fully prepares you for everything because the game and the rules are always changing. And you can't graduate from this school- you just keep learning, because what you need to know constantly changes as does your child and your environment.

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Since then, I've been extremely involved in the education of my two little boys, now both with autism, 7 and 5 years old. I micro-parent. Oftentimes, it was while wearing a permanent apology- like I wasn't entitled to do this and be this. Like I was bothering people by asking, discussing, listening, requesting, suggesting. Always with kindness, absolute respect, trust, and an invitation to open communication and collaboration. 

Last year numerous factors in my oldest son, Greyson's classroom were off, and my gut would not let it go. The prior year I heard abuse coming from that classroom. Abuse that haunts my husband and I to this very day. My gut would wake me in the middle of the night and ask me questions I didn't know the answers to. What is going on in that room? The more I sought information, the more evidence I gathered, the more obvious it became that things weren't right. Greyson's behavior began to change. He was losing language and screaming intensely when frustrated. He wasn't meeting his IEP goals, yet there was no data provided to be able to explain why. When his teacher described him, it was clear she didn't know Greyson; his strengths or his weaknesses. I didn't receive a single Progress Report all year, a Special Education report card equivalent.

Questions I had were met with complaints, defensiveness and eye rolls that made my face burn. My son was coming home with crayon scribbled papers as proof of his daily work. Email requests to observe Speech Therapy were ignored. So I scheduled an observation in person. It was cancelled, as well as the subsequent one I scheduled after that. The Speech Therapist told me my son repeatedly throws his body on the floor when it's time to leave Speech, and he's probably going home with his legs covered in bruises. 

But no- I can't observe...And no, I can't bring our home behavior therapists to observe and collaborate ways on keeping my son safe. I would constantly wake in the middle of the night in fear or in anger. Tears forming a permanant path from the corner of my eye, down to my pillow. We requested school records, as is every parents right. There was no Speech service log, notes, data, or information provided. 

I was told by someone in the District that the SLP didn't really do therapy or take data. Finally his outbursts in leaving Speech (usually a highly NON preferred activity) made sense. I let the school know that Greyson would NOT be receiving Speech Services until I was allowed to observe. This woman began harassing me outside of school- attempting to make sure I kept my mouth shut on this topic. 

I'm no longer afraid of telling the truth. 

It was a hellish year. A year filled with too much regression and too many tears. It brought me to the realization that I am absolutely "that parent" and I always will be. My son deserves it.  And I have to make sure he is getting what he needs, more than I have to make sure people like me. 

As a wise person in the school told me once when I offered excuses for requesting information, Stop- you do not need to apologize for being a good parent. They are so right. There is absolutely no reason to apologize for being "that parent". She is respectful, and she trusts you until you give her reason not to. She loves her child more than words and fear and hope combined. She educates herself on the matters affecting her child. She communicates, offers advice, asks for your input, listens, collaborates. If you are doing the right thing, she is your greatest classroom asset. If you are doing the wrong thing- she will figure it out. You should just change fields now if you hate your job.

Many Special Education programs are broken or outdated. They lack a solid foundation to build on. My son's school is no exception. And the sad fact is, excellence isn't always rewarded, and incompetence, negligence and apathy isn't always punished. No matter how amazing of a house you are trying to build- it can not exist on cracked foundation.

However, there are some amazing individuals within these broken districts working their tails off for our children within our schools. I will continue to work with those tireless, passionate Special Education teachers, therapists, and professionals so they know they do not have to do this job alone. I can't imagine the struggles they encounter every single day. We are forever indebted to the love and sacrifice you pour into our children. The work you pour into our kiddos pays off in dividends, long after you are done working with them. And we keep your name alive in our house. Remember Miss Mary, Grey? Man, wasn't she was the greatest?

As long as I am Greyson and Parker's Mom, its my job to work with the school to make these programs better for all children. I have a ground level view, and I can offer a lot of insight. Right now, we still have a lot of work to do. 

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Over the past five years I've realized, I am "that parent", and you know what? She's really not so bad at all. In fact, I am damn proud to be her.