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. 

Wednesday, October 12, 2016

The Magic of Temple Grandin

The minute she walked out, my throat got tight and I started to cry a silent, tear down your cheek kind of cry. My throat tightens as I type these words and remember the feeling all over again. I didn't hear a sound in the crowded room except for the beating of my heart and my exhales. I felt every single emotion from diagnosis until now, rising up like a bubbling volcano. The feelings were bigger than understanding or hope or even fear. It was a feeling of awe and God and white twinkle lights and purpose.

On this day, I felt my life in its enormity, and it was complete and on purpose.

Last month I had the opportunity to watch Temple Grandin share her message about the autism and "differently-abled brains" with a packed house of people starving for her important perspective. 

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For those who are not familiar with this legendary woman, she is one of the most well known adults with autism. She has been selected by Time magazine as one of the "100 Most Influential People in the World”.  Dr. Grandin presently works as a Professor of Animal Science at Colorado State University and speaks around the world on both autism and cattle handling.  For those of you that have not had the opportunity to hear her speak, I highly recommend you see her live, so you can feel her presence and see her beauty. You can find upcoming tour dates HERE. But in case those stars never line up for you, I want to share some of her wisdom with you here. She said so many things that were mind blowing, and I really couldn't write fast enough. Here are some of my favorite take away messages that I want to share with you.

Focus on Their Strengths
"Parents get so worried about the deficits that they don't build up the strengths, but those skills could turn into a job," says Grandin, who addresses scientific advances in understanding autism in her book, "The Autistic Brain: Thinking Across the Spectrum." "These kids often have uneven skills. We need to be a lot more flexible about things. Don't hold these math geniuses back. You're going to have to give them special ed in reading because that tends to be the pattern, but let them go ahead in math."

It took me patience and time to realize the strengths my boys possess. At first I was looking for Rainman savant like qualities. Will they be able to draw the New York skyline? Will they be able to take apart and rebuild a car? To answer that, no and no. But they each have their own amazing gifts. My youngest, Parker is hyperlexic- he has a precocious ability to read. He is able to process sensory information. He likes to be around people. His imagination and ability to entertain himself through play is remarkable. 

And my Greyson is extremely resourceful when attempting to put something together, or solve a problem. He's great at sorting categories, understanding receptive language, and discriminating the world through pictures. 

So like Grandin suggests, we focus on where they excel, and build on that. 

Expose Them to the World 
Get your children out of the house and provide choices of stretching activities, says Grandin, and shares that the worst thing you can do with a young autistic child is nothing. "Children in my generation when they were teenagers they had jobs and learned how to work. I cleaned horse stalls," she said. "When I was 8 years old, my mother made me be a party hostess - shake hands, take coats. In the 1950s, social skills were taught in a much more rigid way so kids who were mildly autistic were forced to learn them. It hurts the autistic much more than it does the normal kids to not have these skills formally taught." Grandin's mother exposed her to a vast array of life experiences. How will a child know they love machines or horses or art unless they are exposed to it? She urges parents to limit technology to an hour a day, and instead get out of the house and experience the world.

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And it's HARD, trust me, I know it's so hard to rip ourselves and our children from our zone of comfort. To weather that birthday party, trip to the park, or start of a new hobby- but it's IMPORTANT. We can show them by example that we can be scared- but do it anyway. Don't let other people's stares keep you inside the house. If you are scared your child will elope- enlist the help of friends or family and get out of the house.

Don't Get Hung Up on a Label
"One of the problems today is for a kid to get any special services in school, they have to have a label. The problem with autism is you've got a spectrum that goes from Einstein down to someone with no language," said Grandin, who has a form of high-functioning autism known as Asperger's syndrome. "Steve Jobs was probably mildly on the autistic spectrum. Basically, you've probably known people who were geeky and socially awkward but very smart. When does geeks and nerds become autism? That's a gray area. Half the people in Silicon Valley probably have autism."  One thing I didn't know about Grandin, she is HILARIOUS. She had the room rolling in laughter numerous times.

The label only means something bad if you define it that way. Who cares what anyone else thinks?

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Some other practical advice from Grandin: slow down, give autistic people time to respond, any task that requires a sequence needs a schedule or a check list. She said that one NUMEROUS times throughout the presentation, Don't load working memory- we have none. You've got to write it down! Play lots of games that involve turn taking. Children’s board games, such as Candyland, are good for teaching turn taking. When a child gets older, use board games that are suitable for an older child.

Temple Grandin gives parents like me hope. Hope that it all is possible. She reminds me that it's important to enjoy this one sweet life we've been given.

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(scenes from the Fresno Fair last weekend)

I walked away from the evening remembering, even if something we hope for doesn't happen- we will still be OK.  I left filled with hope that the incredibly hard work we all put in means something and pays dividends for years. And Grandin provided a feeling of peace, truly for just a moment reminding me that we ALL are wonderfully and purposefully made.


A special THANK YOU to California Autism Center and Learning Group for making this event possible! And whether or not you have a child with autism, there is something for everyone in Temple Grandin's many books

Tuesday, September 13, 2016

The Beauty of Same and Different

Today I had the honor of reading a very special story to a bunch of wiggly, curious, diverse, brilliant and open minded second graders. Greyson spends a small amount of time in this classroom each day, and I wanted to start an open and honest dialogue with these kiddos.

Second grade is still so young, but not too young to notice differences. I thought long and hard and for weeks about how I could talk to them honestly, without feeling like I was betraying or disgracing Grey. I debated if I should even do it at all. I put myself in my second grade mind- How would I feel listening to this story? How would I feel if the story was being told about me? I thought and I thought and I thought until my eyes crossed and my mind grew dizzy. I bought different books on explaining autism and differences and thought about reading those. They were all so indirect and just didn't feel like me or Grey at all.

And then one Saturday morning I woke up and I wrote. And I wrote and wrote and then wrote some more. I couldn't stop. I was in my pajamas until 1pm, in my bed- writing and creating and thinking and feeling. And on that day the story I am about to share with you was born.

I started by sharing some objects with the kids.

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"Can you tell how these objects are the same?" I asked them. They all starting yelling out answers and the room began to vibrate. FRUIT! The chorus sang. "Now who can tell me how they are different by a show of hands?" (I realized quickly I had to say that last part, otherwise everyone exploded into an answer all at once.)

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"How about these items?" I asked, again looking for same and different.

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"Now these items may be a little trickier", I told them. "How are these items different?"

"Well one is a decoration and one is a piece of fruit", a child answered. "How are these same?" I asked, wondering if this would stump them. They had the GREATEST of answers: They both have a sticker on them (which they do. The yellow owl has one on the bottom.) They both cost money. Yes, yes, yes!!! I squealed, so excited that they were coming up with answers I hadn't even thought about. "They are both smooth", I added.

I told them I had a very special book to share with them, one that also talks about same and different. I prayed I wouldn't curse or do or say anything inappropriate and I began...

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It's hard to describe how I felt reading the book. Some mixture of profound sadness, and absolute elation and joy and love and acceptance. "Does Greyson really learn how to talk better when we talk to him?" One little boy with bright eyes asked. "Absolutely," I told him. His eyes lit up even brighter. A precious little girl walked up to me afterwards. "I really like your book." She told me. And then she hugged me and said, "I love you." Oh you guys- I melted, and then froze because I didn't know what to do. Do I say I love you back? Will I get arrested? It was like I was looking down at a little me at that age who just wanted to love. 

"I love you too." I told her. Because I realized instantly, I'd rather get arrested than hurt her feelings. And I really did love her. And I love you dear friend, reading this too. 

And gosh, I love second graders. A place where someone who has autism really isn't different at all. When the world hasn't yet told you the dumb, made up rules like- You aren't allowed to tell people you don't really know that you love them. I think that rule needs to be tossed out. These kids are so smart, and it's so easy for them to figure out how we are different AND how we are all the same too. It really made me realize that grown ups are the ones who get stuck on the different and lose touch with the same part. 

Turns out those little nuggets weren't the only ones who learned today. I'm so grateful for all the lessons they taught me, important ones that I will carry with me for always.

Thursday, September 1, 2016

the return to innocence

Growing up, by the end of the week mom was usually done cooking. By Thursday or Friday night- our dinner was a compilation of left-overs from the week. What's for dinner? I would ask expectantly, knowing that 92% of her responses made me groan in disgust.  But "left overs" would garner the BIGGEST of groans. First of all- Sorry Mom. Second of all-I'm sorry to you, dear friend reading, in advance. Left over brain particles is all I got in me tonight. They are right next to some chimichangas. But it's been too long, and I miss you.

The past three weeks have been a blur. I'm busy all day long, doing I have no idea what for 3-60 minutes at a time, with not really much to show for it at the end of the day. We are just starting to- (dare I say)- get kinda, sorta adjusted to school. The feelings are coming back into our limbs. I've hinted at it before, and without saying too much- last school year was extremely distressing for both Greyson and our whole family. I believe the proper term is it "sucked monkey balls." There's a lot of pain and fear I still carry in my neck and shoulders that can only disappear with time and with trust and with lots of exhales. (Big ones). Try it now- exhale the monkey ball stuff in your life out. Whhhhheeeeeeewwwwww. I love it when you play along.

The Law of Conservation of Energy states, "Energy can neither be created nor destroyed; rather, it transforms from one form to another. For instance, chemical energy can be converted to kinetic energy in the explosion of a stick of dynamite. A consequence of the law of conservation of energy is that a perpetual motion machine of the first kind cannot exist."

It's so true with our hearts and our precious and finite human energy too. When we were in the thick of it last year- I just couldn't write. I couldn't write about what was going on, and it's all I thought about. How could I write about anything else? I felt like a fraud and the well where I dip into for creativity- it was empty. All that energy went into fighting and tears and pleading to God at night for help. I would wake up numerous times a week at 3am with my hands shaking in fear or in rage. I think there is a permanent indention from the corner of my eye down the side of my face where my tears dropped onto my pillow. I took on so many roles that ripped me from any zone of comfort, and it was hard. I can say I was true to myself and my character the entire time. To me- nothing is more important than my word, and that's still the case. I can say I fought with love. I can say, without a doubt- I did what was right for Grey. I can also say- in the process- we met so many good humans with gorgeous character who tell the truth and do the right thing too. I like to say, if a cloud doesn't have a silver lining- then sew one in baby.

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But it's over. We are all ok now. I'm letting go of last year's pain because it is no longer meant for me to carry. And the landscape has changed. We gotta gem of a new Teacher, and we began the year with the full intention of embracing it as a brand new beginning. Because it is. And all that monkey ballness has made me stronger. I don't feel it yet- I still feel a little timid and shell-shocked. But I know I'm stronger in my bones. Strong doesn't mean fearless. It doesn't mean you know everything. It doesn't mean you aren't scared. It just means- I've been through some shit and I'm still alive. And tomorrow I'm willing to wake up and take on whatever comes my way too. I'm ready to let go. I'm ready to hope.

Today I was driving and and old song from 1994 came on. Enigma- The Return of Innocence. And I realized I felt like me for the first time in a real long time. I rolled down the windows for the first time in a long time too- and while the wind whipped at my hair I just felt.

Don't be afraid to be weak
Don't be too proud to be strong
Just look into your heart my friend
That will be the return to yourself
The return to innocence.

And I listen to it now as I type. And I'm certain the lyrics were supposed to find me today. Maybe they are supposed to find you too...

If you want, then start to laugh
If you must, then start to cry
Be yourself don't hide
Just believe in destiny.

And when the chanting started, I started to cry. Because it made me feel soooo much. Soooooo soooo much. Because my boys have a severe language delay- and the chanting reminded me that you don't even have to say words to make people feel so much that they can hardly breathe it's so good.

I'll leave you with our 'Back to School' picture, and some words...

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Our pic doesn't look like anyone else's because our life doesn't look like anyone else's. Some days that's hard, but most days, it makes me really grateful. This has been our ritual for the past year. We get to school early so we can get one of the Special Ed parking spots, and it gives us both time to unwind and start school off feeling calm. Grey grabs his delicious homemade and organic breakfast (fine- it's actually a frozen waffle or cereal in a red solo cup(!)), juice, and his favorite cars of the day, and we tailgate. A beerless, footballess version of course. We just sit and watch the cars drive through, and watch the kids on the playground play. I drink coffee and get in trouble when I try to smooth down his wonky bed head hair. It makes me think of the quote in the movie, Up. Russell, the tiny mailman says, "That might sound boring, but I think the boring stuff is the stuff I remember the most.”
And for us, this is absolutely true. The boring stuff is our favorite.