Monday, November 16, 2015

turning imperfection into golden beauty

Some parts of parenting a child with autism are exactly the same as parenting typically developing children.

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I love them like my life depends on it. I make sure they are fed and bathed and learning and loved and challenged. I try to focus on and build their strengths. I try to remember how I want to raise them in a world full of distractions, hoping that I am teaching them good enough so that one day they can make important decisions on their own.

Some things about parenting children with autism are really different. 

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Like attending hours on top of hours of Speech and Behavior Therapy, sometimes using pictures to communicate, making hard decisions on adjunct therapy and special schools and trying to appropriately navigate parenting two small children whose developmental age is well below their actual age. 

Often I forget that my sons have autism, or that they may look or seem different than other kids. And it always catches me off guard when I am reminded, to the point where I sometimes don't know how to respond in the moment. I see a teachable moment drift through my fingers like sand as my emotions take over. I feel inept as a parent to speak important words on behalf of my precious boys, and then I feel guilt knowing my imperfect response is deeply inadequate .

Like when a sweet little boy asks my six year old son Greyson his name. We have to prompt Greyson to respond to people. 

"Tell him your name". Greyson looks off in the distance, unresponsive. 
"What's your name?" We ask again- using the same specific verbiage he learned as part of a Behavior Therapy program called 'Social Questions'. 

"Gaysin" Greyson responds, because that G-R sound blend is a killer, and one of the many things he works on at Speech.

"Why does he talk so weird?" this little boy asks. 

My heart sinks into my stomach. I have so many thoughts they form a tsunami and nothing but a few rain drops end up coming out.

I love questions, because it means people care and want to know more. I've realized that most people mean well, and I haven't become jaded with too many off the wall, did you seriously just ask me that?!- questions about autism. And there is nothing better than questions from little kids- because they are such a blank canvas for understanding different. They are our future advocates, our world changers.  But as much as I want to say, "Well, God made us all different and that's OK-and blah blah blah", at this moment, I can't hear anything but weird, echoing in my chest. 

I think of all the time Greyson has poured into Speech Therapy since 23 months of age. If I counted up all the hours I'm pretty sure he has a phD equivalent in something. I feel sad that despite all of his work, his language stands out considerably and still barely gets his needs met. Sad that these situations are our new normal and I'm not always prepared to handle them. Sad that I'm taking such defense to the word, 'weird'. Because he does talk weird, which is just another word for odd or unusual. He has apraxia which means his brain and his mouth have trouble working together. French fries comes out as dit mies. Hot dogs are ha-gaws. There are many sounds he can't make, syllables he deletes and sounds he replaces with other sounds. Oftentimes he thinks he is saying something correctly, which makes it even harder and more frustrating for him. And instead of explaining away the weird or pretending it doesn't exist, I have to make peace with our truth in order to move forward to the actual message that I would prefer to share. 

My son is different. Different is not always bad or weird. It's not always special and heroic either. Sometimes different is just different. 

There was nothing wrong with this innocent, beautiful, curious child's question. I take full responsibility for the onset of my emotions triggered by a word as simple as weird. You see, sometimes my head and my heart don't work well together either. 

As evidenced by much of society, we don't like different. We are happiest with two categories- my opinion and wrong. Don't believe me? Read any article on same sex marriage, special needs, politics, religion and a myriad of other topics. Then for a real kick- read the comments. And it's these messages, and so many others, both direct and subtle that have taught us, and now teaches our children that different is a synonym for weird, or even worse- wrong or bad. 

So those of us that care, those of us who will not stand for this, we need to preach the beauty of different. Because the world is a better place when different is celebrated instead of feared, ridiculed or silenced.

The Japanese have a term derived from Buddhist teaching called wabi-sabi. It is the beauty and appreciation of things imperfect, impermanent and incomplete. The first time I read that definition I finally felt like I had an explanation for my whole life. I had permission to find our brokenness beautiful, and in fact- sometimes even preferred.

A related Japanese philosphy of embracing imperfection is called kintsugi. This is the centuries-old art of fixing broken pottery with precious metals like gold, silver, or platinum. 

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This repair method celebrates the pieces unique history by emphasizing the breaks instead of hiding them. Kintsugi often makes the repaired piece even more beautiful than the original.

And so I wrap this philosophy around our story because it's truth. Wabi sabi is my dog's under bite. A first draft of these words that are so important to me to convey to you. Our scuffed wood floors, and the tiny chip in Parker's front tooth. It's the wrinkles around my eyes, and the constant finger prints on our sliding glass doors . Wabi-sabi is absolutely Greyson's speech. Perfect in it's utter imperfection. A tale of hard work and pain, of triumph and a tiny human's huge spirit. 

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And just as parenting children with autism is different, so are the lessons I learn by it's very presence in our life, creating beautiful gold cracks in our life. There is a certain freedom in accepting their imperfections, and in turn possibly turning my very own imperfections into something beautiful too. 

Maybe we are all just wabi-sabi. 

Sunday, November 15, 2015

singing in the rain

I felt like I had worked my entire life. Babysitting in my tweens and teens, a part time job at 16, and throughout high school, and a full time one during college. After college graduation I did a free internship for a company that wasn't hiring or even looking for an intern. "I'll work hard, and for free," I told the Event and Entertainment Marketing company that I desperately wanted to gain experience with. At night I waited tables so I could buy a used car and take on its monthly payment.

So here I was, many years later, 40 weeks and 1 day pregnant- knowing I was about to go on Maternity leave for 4 whole months. I checked my work email one last time, after my water broke but before the contractions really kicked in. I am not stay at home mom material, I thought. What in the hell am I going to do EVERY day ALL day for the next four months? And more importantly, without work- Who am I? I had no answer at all. No nouns to desribe me. Because I didn't yet know what it meant to be "Mom", a title more important that any work title I had ever known.

Greyson was born, and two days later I find myself at home for the first time with him. And really, it was awful. It was the hardest, weirdest job I had ever had in my life. I didn't have a supervisor to consult. No job training- I mean babysitting someone else's child doesn't compare. Someone else has to make the hard decisions. You get to go home after your shift. I was anxious and exhausted, waking numerous times each night to feed and change him, or simply check to make sure he was breathing. My hands shook I was so scared, and so unsure of everything. I missed who I was at work- confident, secure, showered. At home I was a sweaty, pajama'y, flubbery, hormonal wreck. I couldn't stand the sight of my stomach, like a hot air balloon that had lost half it's air. I was busy ALL DAY LONG, feeling like I had accomplished nothing and had nothing to show for it.

And a week went by, and things got the tiniest bit easier. Like 3%. And then by week two I was approaching some sort of loose routine. Nothing complicated- like eat breakfast, shower (he will be fine in the bassinet for a quick shower- just do it! I would yell at myself). But I can still remember numerous times, hearing his cries and running out of the shower with shampoo running down the face and back- trying not to slide on the marble tile as I quickly dried off as best as possible.

And then, just like that- we made our way. My little buddy and me. It probably took six weeks before fear didn't punctuate everything I did. Love was now my driving force. We walked to the beach every day. We had conversations at the grocery store. I loved talking to him, reading to him, being with him and breathing him in. I couldn't imagine ever going back to work, and any time I tried to imagine it- I would start sobbing.

"I think you need to go see someone", Michael said. "I think you have postpartum depression or something."

"Why would you say that?" I asked, confused. Annoyed.

"Because you cry all the time", he responded.

"Only when I'm rocking him, and I try to imagine someone else doing it instead of me. Or when I think about going back to work. I'm pretty sure that's not postpartum depression!"

I ended up going back to work until Greyson was a year old. It never got any easier for me. It was then I took on my current position as stay at home mom. Most days are nothing like I ever could have imagined and certainly not story-book like or glamorous.  Except for today. Today was amazing.

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We got some much needed rain in the Central Valley today.We woke up to the steady hum of droplets on windows.

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We went outside as soon as we woke up. Who can wait to open that gift?

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This is Grey's, I love the rain, flap.

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And his, I love the rain on the pool, flap.

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The three of us suited up and went outside.

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And the rain felt cold for at least five seconds. And then it felt like being alive.

Moming- it's still the hardest job I've ever done. But the best too. Especially on days like today when you get to be a kid all over again. 

Thursday, November 12, 2015

practicing grateful

All of us are on a journey. On our very own less traveled path most likely.

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I think it's safe to say we all want to be happy and to find happiness along this journey. The problem is- we don't always know what real happy looks like, or how to find the kind that has staying power.

We may try to buy happy. Or stockpile future happy based on some contingency. You know- those sentences that start with, "As soon as X happens- then I'll be happy." But then you realize there is always, always another X we need and not enough time for happy.

As Thanksgiving approaches, I am thinking more about what it means to be thankful. I want to learn how to sew a thread of grateful throughout my entire life, because I'm certain gratitude and happiness are correlated. Research has proven that just a little gratitude is essential for happiness. Which makes sense because how can we be happy unless we are content with what we already have? The good news is gratitude is something we are all capable of. It's learned that the trick isn't to get X, the trick is to love and appreciate all the X's that are already ours.

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It's so easy to lose track of what we have and instead focus on what we want. It's easy to compare our lives to others and feel as if we fall short. It's easy to count and multiply our problems or turn small things into unsurmountable problems. But when done too much, all of those things come with a life sentence of unhappiness. And I don't think any of us willingly chooses unhappiness.

I think thankfulness is something that can be practiced, never mastered. It's got to be small and frequent and genuine. Not some big sweeping once a year statement like, "I'm grateful for my family and my home and my health. The end." I think real gratitude is best practiced daily, in a million different small ways.

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I'm grateful for deep thinking expression number 7,362

Grateful for the first blessed sip of coffee every single morning. Appreciative of a steaming hot shower all by myself. Grateful for their poop that makes it into the potty. Grateful for Fall Fuji apples and the smell of his baby fine hair as I rock him to sleep. Grateful for my village. Grateful for warm socks. Grateful for you folks here, reading these words and discovering the world at the same time as me.

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Just thinking about these things makes me happy. A happy I wouldn't have if I didn't take time to focus on it. Take time to focus on it. Happiness can't have contingencies. It doesn't cost money. It's fleeting for a reason- because we need to keep discovering it while living out our journey.

Right now, think of 5 simple things that make you happy. Share your list with others. You just might realize that a little thankfulness actually can change the world.

Wednesday, November 4, 2015

bologna and fitted sheets

What is it that makes you happy? Chances are you don't do it very often. At least not often enough. Maybe because you can't do it perfectly. Or you can't do it in the morning, or at night. Or for two hours or alone or while wearing purple pajamas- or whatever restrictions or requirements your thing needs.

So you just don't do it at all. Which is sad- right? In fact, I'd have to say the fear of imperfection can stop many people from even finding their passions in life. And then when you finally find it- you just can't seem to make time to do it. The little and big things that make us- us. I like writing. But I don't have the time I need to do it really right lately. So I don't do it so much. And the less I do it- the less the creative muse speaks to me. We lose touch.

When really, I just need to do it more. For only five minutes. Or on Tuesdays. Or in the morning instead of night. Or while wearing pajamas. Or whenever my little heart desires. Do what you love, imperfectly, as often as you can. Pencil it on the to do list. Cross it off.

Today was stupid. People were mean. One people actually, but my mind turned it into all of the world.  When your child is in an autism classroom, they can not be picked up and dropped off through the regular carpool lane. For their safety, our precious cargo must be hand delivered, hand picked up and kept behind locked gates at all times. Many children with autism are fearless or unaware of the danger of moving cars and parking lots. Elopement (wandering or bolting) is also a relatively common problem amongst those with autism. There are a handful of special parking spots for Greyson's classroom but today they were all full. I see Greyson waiting with his Teachers so I pull into a NO PARKING area directly in front of him to load him into the car. Suddenly a bologna douche (I've decided that adding "bologna" to names and curse words makes it more fun), comes up to me and starts yelling. YOU CAN'T PARK THERE. IT SAYS NO PARKING. I'm confused as to why a father of another student think it's his place to yell at me and play parking police. I mistakenly try to reason with him, thinking he's human; clearly he just doesn't understand my situation. "I'm not parking- I'm just putting my son in the car."


"I understand that, sir, but my son is in the Special Needs Classrooms right there and all parking spots are taken. He needs assistance to get into my car so I am just going to load him in and leave."

THAT DOESN'T MATTER. YOU NEED TO FOLLOW THE RULES. WHAT KIND OF EXAMPLE ARE YOU SETTING FOR THE KIDS? YOU NEED TO MOVE. YOU CAN'T PARK HERE. WHAT IF HE NEEDS TO GET OUT? This man asks, referring to a Sno Cone truck parked on the playground. (As a special treat to the student some days sno cones are available for purchase after school.)

"If he needs to leave, I'll be gone. My son is TEN FEET away and this will take us 5 seconds." (Besides, why would the Truck with a line of ten kids out front of it need to urgently leave? Is he expecting some kind of sno cone EMERGENCY to occur?")

We go back and forth, until finally I realized there was absolutely no reasoning with the Bologna. In fact, most people that yell at strangers in public for no good reason are not worth reasoning with. You get drained and they get fueled.  "MIND YOUR OWN BUSINESS", I finally sputter out. "If you have a problem with me- call the police".

I'm not confrontational by nature- so this exchange took everything out of me. I got into the car exhausted. And this guy deserves NO space in my head, but boy did I give him a front row spot in my noggin. I cried to my person, Annie- "Boooooohooooo- I'm just so mad that I am CRYING over this and he probably has forgotten all about it and is already being an asshole to his next victim."

I felt like everything was just so hard. Michael was out of town for work. I was so tired in my bones. I felt sad that sometimes there are so many extra steps to consider- all the time. I felt mad that we can't use the carpool drive through lane like the general ed parents can. I felt sad that some people truly lack an ability to be compassionate. I felt sad that you can just be going about your business and someone can come up and poop on your day. I felt defeated. Defeated by Bologna, and defeated by life.

I had to wade through a lot of muck to get to the other side. It formed a big parenthesis on my day. I wish I weren't like that- but if that's the price I pay for being reasonable, empathetic and sensitive- it's (painfully) worth it. I was folding the boys laundry this afternoon and I realized that life is a lot like folding fitted sheets. It's really hard to find all the corners at once. And when you finally do- even if you line them up as perfectly as possible, it's still impossible to get everything in line and precise. You finally just end up with some parts straight and some parts swirled into place and then quickly shoved into a closet while hoping it doesn't all explode out everywhere. I keep wishing that life could be more like folding flat sheets. Easier, predictable, precise. But that's not the case, and it never will be.

Halloween was very fitted sheets. Parker refused to wear the dinosaur costume he insisted on wearing every day last week. We went to one house to Trick or Treat and then called it a night. I didn't even get any pictures. And this is what happened when I tried to recreate some magic.

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This picture totally made me think of this.


And the funniest part about Parker not wearing a costume on Halloween? The next morning he refused to take this off. Go figure.

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And to answer Bologna's question- "What kind of example are you setting for the kids?" One with empathy, kindness, compassion and even a little rule bending here and there when it doesn't hurt anyone. And it's a darn good example too, I hope.

Wednesday, October 21, 2015

Fall Harvest

Autumn. The third season of the year, when the seeds that were planted in the Spring are now crops that are ripe and ready to be harvested, hard work paid off. The days are getting shorter and cooler. And eating more carbs is a biological necessity to stay alive (at least that's what I tell myself. Please just play along.)

Over the weekend we were debating heading to a local annual Fall attraction called the Fresno County Fair. It is still unseasonably warm in the Central Valley of California.There are crowds that fill everywhere from parking to entering, and daily attendance is estimated at 45,000. To be honest - it sounded kind of awful and inconvenient and I wasn't even sure if my boys would enjoy themselves.

"Grey- do you want go ride the spinning swings?", I asked, remembering back to his favorite activity from the fair in the previous year. "NOOOOO!!!", he responded loudly, well, because that's his current favorite response to most questions lately.

I went to my computer and pulled up a picture of him on the swings last year, and asked him again while pointing to the image. And his response was one I've never seen or heard from him in my entire life. I sat in shock with a smile frozen on my face and my eyes open wide.

Greyson was excited. Pure, golden, liquid- excitement. Greyson's face frequently does not display what he is thinking or feeling- but this moment- it did. It's like some seeds hidden deep under the earth had finally bloomed. Grey jumped up and down and flapped all over the room, repeating, SWING!!!! SWING!!! SWING!!! while squealing in delight.

And just like that, our decision was made.

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Luckily we went early and there were no lines for parking, entering and even for most rides. 

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And I watched him ride the swings with a smile on my face and a huge lump in my throat. I've never seen him so calm, his body so relaxed. It's like he was born to fly. 

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He rode again and again. He even waited in line until it was his turn- a task that brought yelling and tears last year. More seeds finally ripening.

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We are lucky to live in Fresno County, the world’s top agricultural area. There were more than 350 different varieties of locally-grown crops on display during the 2015 Big Fresno Fair.

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Parker preferred eating and watching from the sidelines.

Sometimes fun is hot and sweaty and dirty and crowded and inconvenient. And oftentimes the harvest is still greater than all that struggle.  

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All the tiny seeds bloom in time. (I promise). You just need to wait for Fall.

Tuesday, October 13, 2015

letting go of prefection

I am what you think of me. 

No, not you as a reader of these here words. You- as a people. As a society. As the person in front of me at the grocery store. The person who wouldn't let me into traffic. The writer of the crappy rejection letter when I submitted one of my blog posts. You know, the one about letting go of expectation. You see, that was a piece of my heart, and your callous robotic "We'll pass, but submit another story soon" was even more assaulting. Like eat a half a bag of funions in my car insulting. 

I am the dinner that burned and the broccoli that turned to mush. 

I am the package I forgot to mail, when I did everything else in the universe on the list of to do.

I am the awful zit that deserves its own zip code.

I am the loudest yell, after I've lost my patience with the boys at 7:30 at night and I feel so guilty.

I am five minutes late to the appointment.

I am how my kids behave.

I am judge and jury to myself and I am not fair at all. But I don't want to be what I think you think of me. I don't want to be what I think of me when I am not perfect. Which is always. 

I hate perfect, yet I chase her daily. And she always runs faster than me. Knows more than me. Is prettier and nicer and a better dresser and cook than me. She is everything more than me. And she isn't even real. There are consequences to chasing perfect- and that's never being happy for longer than a minute. Perfection often stops me from getting what I really want. What I deserve. Because I talk myself out of so many things. You know- because I can do them but I don't because I can't do them perfectly.

But today I remember letting her go, is much more important than chasing her. Perfect, it's not you, it's me. And I like me more than you so you are going to need to go. I'm looking for someone more along the lines of content. 

I am not what I do. I am not what I think you think of me. That's heresay anyway- right? I am not my big and tiny mistakes. I am not even my greatest successes. I am a girl, waking up every day and doing the best she can. I will work on being imperfect and content. I will work on making more mistakes, failing more. I am ready to be me.

“The thing that is really hard, and really amazing, is giving up on being perfect and beginning the work of becoming yourself.” ~Anna Quindlen

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Wednesday, October 7, 2015

The Death of Expectation

With one final, excruciating push he flew into the world. All the pressure was released and for the first time in so long I am able to take in a deep inhale. In that same very instant a brick house of expectation was also born. 

He was perfect. Ten finger and toes and I sighed, and fell in love with every single blessed detail. Soaked him up and felt it- the sweetest, purest love. I didn't know it existed quite so lucidly. My expectations already had his life all planned out for him. 

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He will smile and sit and crawl and one day even walk. He will say Momma, and love ice cream. He will dress up for Halloween. He will love his birthday. He will say the funniest things. I will read him books at night and scare the monsters away from under his bed. He will ask for extra pancakes and wrap me around his currently teeny tiny finger. 

He will go to school. He will be smart. I will help him with science projects and pretend to be annoyed but  actually love it. He will play sports, and be a humble winner and the very best loser. He will be fast. He will be brave. He will be kind. He will go to college and get married and have babies.

I had great expectations. And then right before his third birthday, I heard the words, "Your son fits the diagnostic criteria for autism" and I thought he died- my precious son. In an instant, my boy's life vanished right before me.

I didn't realize at the time, but he didn't die at all. It was really just the death of expectation. You see, I confused the two; my real boy and the son I expected him to be. And mourning expectation is so very hard. Letting go of years worth of day dreams doesn't happen in a day or a week. And like many before me, I deeply grieved the loss of that expectation. Some of what I expected for me. Some of what I expected for him. I ached for each and every single one of those experiences I might not ever have. I couldn't really relate to Welcome to Holland, an essay written in 1987 by special needs parent Emily Perl Kingsley. Kingsley describes her parenting journey as being excited while preparing for a vacation to Italy (her expectations) only to find that she actually lands in the country of Holland (reality of special needs parenting). You see our reality didn't really feel like vacation at all. It felt like a death. 

And the more I shed the pain of expectation, the better I got to know my boy. The real one I got, not the made-up one I expected. He doesn't deserve to be expected to be anyone other than who he is, and who he is- is amazing. It took time and strength and a determination to willingly let my expectations go, without throwing hope out at the same time. To wake up every day still, and decide to let go again and again. And the truth is that my real boy is alive and better than any of my wildest expectations- in ways completely different than I could have even imagined.

And as far as his future - anything is still possible. I just don't need certain things to happen in certain order to be happy and to measure the worth of my parenting experience.  

The truth is, for most of us, reality is nothing like we expected. It is only in the letting go of our expectations that we are able to realize that our reality may not be so bad at all. When you are living an unexpected life it is easy to focus what you don't have. But there is also incredible beauty, perspective, love and experiences that come with the unexpected. It's so important that we notice those gifts too.

Sometimes I have moments when I still focus on the death of the expected. But now I remind myself how awful it would feel if someone constantly expected me to be different- and to be someone I'm not. I've learned the very definition of unconditional love is choosing to love someone exactly for who they are. A love not based on expectations, but on reality. I've finally knocked down that brick house of expectations. Turns out it was hiding the most incredible view.

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Thursday, October 1, 2015

the beginning

The date was March 13, 2012

Of all the days the dogs could get loose, I mutter curse words mixed with anxiety under my breath. My heart is thumping and my jaw is clenched tightly. I can’t be late. I’m always late. Why am I always late? I hold them both by their collars, and walk hunched over back into the house. Despite the cool March breeze, I’m sweating from pounding up and down our street, insanely yelling and ridiculously waving lunch meat around as dog bait. Of all the times Michael could be out of town for entire week, this time is the worst. This work trip was out of his control but I’m still angry at him. I’m angry at life. I have no energy for angry at this moment though, my focus is only on Greyson.

I need to call them and let them know we are running behind. 

“Hello, this is Chrissy Kelly. My son Greyson has an appointment with Dr. Glazer at 1:30 this afternoon. I’m so sorry, I left the front door open and my dogs got loose, and, well… anyway, we are running about fifteen minutes behind. Will you please let Dr. Glazer know, and please tell him I’m so sorry?”

This appointment took months to set. I can’t risk missing it. I hang up the phone and turn to Sally, a woman who will be watching Parker while I’m gone. She’s older, profoundly plain and so quiet it fills me with an unease that makes me talk much too much. I feel panicked about leaving. We’ve lived in the Central Valley of California for almost two years, and I’ve only left the boys with a sitter a handful of times. We have no family or long-term friends here and I’m left with no other options.

“Parker just fell asleep about thirty minutes ago. He will sleep anywhere from 1-3 hours. He will want something to drink as soon as he wakes up. Juice is fine,” I tell her, pointing out the sippy cup already filled and stored in the fridge. I gather preferred snack items from the pantry and place them on the counter. “If he’s hungry, he can have any of these things too.” 

Sally nods. I feel guilty that my face will not be the first Parker sees upon waking. “Greyson has an appointment with... We have a doctor’s appointment and I don’t know how long it will last. I’m guessing a couple of hours but I was told it might take longer.” 

Sally responds with another wordless nod. More unease. I’m so sick of silence.

“Greyson, time to go bye bye”, I call out to 33-month old Greyson sitting in front of the television, switching his focus between watching his favorite television show Blue’s Clues and intently playing with the collection of hot wheels at his feet. The little yellow ‘69 Ford Mustang is his favorite.

“Grey, time to go.” I get down on his level and brush a golden, lopsided curl away from his stormy blue eyes. I hold the yellow car up towards my face to get him to look at me. “Mommy and Greyson go bye-bye in car,” I say feigning excitement with eyebrows raised. His eyes offer no recognition.

Greyson is a late talker, which from what I have heard is pretty common in boys. I really need today’s appointment to confirm that he has nothing more than a simple delay in speech. Sometimes the demons come out at night and tell me otherwise. They tell me horrible, awful, suffocating things that suck the life out of me, leaving me exhausted but unable to sleep. I shake my head to stop these thoughts. Right now I cannot let them seep into my brain.  I take a deep breath in, certain it’s my first one today. Today I am rational, focused and strong. We’ve been instructed to speak to Greyson in 2-3 word sentences in order for him to comprehend. I talk to him constantly, hoping it will help kick start the language explosion I wait for daily. “Mommy is opening the door.” “Mommy and Greyson are going for a walk.” Actually- mommy is going crazy from all the fucking silence. Grey grabs the tiny yellow car from me and remains silent, intensely focused on spinning the wheels of the car he holds in his almost three year old, perfect dimpled hand. Greyson is wearing a shirt I selected specifically for today, his name is stamped  across the front in big, bold letters. G-R-E-Y-S-O-N. I want to send a message to Dr. Glazer. I don’t want him to forget for one second that he is dealing with a real boy who loves trucks and ice cream and running around outside. He is not another name on a chart, he’s not a statistic - he is Greyson Michael Kelly and he is my heart. Greyson stands up and grabs his yellow car from my hands. Together we walk towards the garage door.

I am on cruise control, a mothering robot. I can’t think about today’s appointment or I will lose muscle function and crumble to the floor. I focus on breathing in and out. I drive clutching the steering wheel tight, foot pressed sternly on the gas. The expansive foothills of the Sierra Nevada Mountains wrap around our neighborhood and I am scared to leave their safe hug. I notice Greyson through the rear view mirror, watching the world blur by from his window, I long to know what he is thinking. “Love you Grey”, I call out like I do a hundred times a day, reaching my hand back until he grabs it for the briefest of moments before letting go. He always lets go first.

We arrive and check in; we are the only people in the waiting room and silence is echoing off the walls. I start to swallow rapidly; I feel my stomach in my throat and hope I don’t throw up. I stand up, restless. I can’t sit and do nothing. I can’t stand with my legs shaking so I sit back down. Why do I have to be here? I hate that I have to be here. Why can’t we be anywhere but here? I just focus on breathing. I can’t get a full breath in.

A door opens and a smiling head pops out. “Hi, we are ready for Greyson now. Would you guys like to come on back?” A woman assaults me with a chipper smile and leads us through a keypad locked door, down a hallway and into a make shift office with a desk. The walls are stark, bare of customary doctor diplomas. Dr. Glazer has his own private practice, and one day a week consults for the Central Valley Regional Center, a local non-profit organization that provides assistance for children and adults with developmental disabilities, the dreaded place we are today. He is a Clinical Neuropsychologist, and I have already memorized his Curriculum Vitae. I needed to know everything I could before today so I could be completely prepared. I traded in my usual outfit of yoga pants and T-shirt in order to look the part of the stylish, together Mom. I am wearing my favorite comfortable jeans and a new green chain-patterned shirt that I bought because this particular shade of green makes me happy. I smile and focus my full attention on Dr. Glazer while turning myself into the Chrissy Kelly of my past life in Los Angeles, confident pharmaceutical salesperson extraordinaire. 

“It’s so nice to meet you, Dr. Glazer,” I say with a firm handshake. “Thank you for meeting with us. I’m so sorry we were late. I heard you were thorough and attentive, so I specifically requested you for this evaluation.” 

He is a handsome man in his mid 50’s with medium-brown hair, and a mustache that reminds me of a younger version of my dad. I am comforted by this piece of home. His hand reaches out to meet mine and I see his eyes crinkle on the sides as he smiles,. 

“What brings you here today?”

Wow, no bullshitting around. He’s going to make me say it. 

“I’m here to see if my son Greyson has autism.” Autism: there, I said it like I was okay with the word, summoning a confidence that isn’t real. I still can’t believe any of this is happening. I want to throw up. Why did I have to become a grown up? Dr. Glazer gestures toward the black leather armchair on the opposite side of his desk and asks me to have a seat. Greyson has already found a bin of toys behind me in the corner of the room and is happily entertained by pushing a green truck back and forth in front of him. I hear the faint buzz of the harsh florescent lights overhead, and I stick to the chair and make awkward noises as I try to get comfortable. The room is freezing cold.

“Okay, let’s begin. I’ll start out by asking you a few questions,” Dr. Glazer says. 

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He asks detailed questions about everything from my pregnancy to Greyson’s birth and details about our life today. I answer on autopilot. I answer these questions at least once a month and I’m annoyed because I know they contain no answers. He makes notes in the yellow CVRC-issued chart which was began at our first hint of concern almost a year ago.

40 weeks and one day
7 lbs 1oz, 21 inches
He will turn 3 in June

Weight, siblings, pets, current therapy and schooling - hundreds of details gathered. I begin to answer impatiently. I want to get directly to the real questions - the ones that will allow him to tell me a YES or NO. Finally we get to a more relevant topic- Greyson of today.

“How does he act around other children?” 

“Really good”, I’m relieved to say, because I know it’s the right answer. Kids with autism hate being around people, a fact that has often brought me relief in the thinking spaces at night. Grey is fine. “He plays with other kids side by side, but that’s not unusual for children his age. It’s called parallel play, right?” 

When you have a child with potential developmental delays, you get your Google PhD in early childhood development. 

“Yes, but does he interact with them? Does he repeat what they are doing? Is he curious about them? Or, is he afraid of them? Does he come to you for comfort? Does he ever seek other children out?”

The hollow in my stomach grows. I have never looked at his social interactions from this particular angle before. Greyson doesn’t do any of that. I so desperately want to lie, but I’m here for the truth. Even if it isn’t the truth I want to hear. 

“No,” I slowly shake my head back and forth, thinking painfully hard for a single recollection. “He’s okay being around them, but he doesn’t initiate interactions.” I feel like I need to explain more, but there is nothing else to say. I began to bite the inside of my lower lip nervously. I feel like I am losing control.

“How is he with his brother? “

Greyson looks through Parker as if he’s a ghost. “He doesn’t seem to notice him. A couple of times he has come up and grabbed his foot and looked at it curiously.” I say hoping it doesn’t sound as ridiculous as it feels to say. I’m angry because that sums up the depth of their brotherly relations. In Parker’s eleven months on earth, there have been precious few interactions between my two boys. Motherhood looks nothing like I expected.

“Does he interact with your pets? I think you mentioned you have two dogs?”

“No. But Belle my dog, she’s a Puggle - she loves him and is always trying to play with him. She’s really annoying. She doesn’t let anyone ignore her.” 

“Does he ever point out things he likes, or bring you items and show them to you?”

“Well - he… No.” I am trying desperately to make my answers fit, but there is just no room. I begin to panic, I know I am giving all the wrong responses and my fear kicks up a notch. My hands shake harder and the hope I came with is quickly spilling out onto the floor in front of me. 

“Since Greyson is so young, a lot of what we go over today is based on your feedback. You are going to fill out something called the Wechsler Preschool and Primary Scale of Intelligence, referred to as “Whipsy” and The Adaptive Behavior Assessment System - ABAS. While you fill out these forms, I’m going to work with Greyson. Let me know if you have any questions about any of it.” 

I begin to complete the detailed, fill-in-the-circle, empirically validated tests. I pause to think, rubbing my fingers over the glossy cherry wood desk. I can’t focus, my eyes jump over words and I can barely remember how to read. I burn with concentration- I don’t want to mistakenly give the wrong answer and create a horrible false fate for Greyson. I am a mix of adrenaline and exhaustion. Dr. Glazer gets down onto the floor with Greyson. I am hyperaware of Greyson’s lack of response. Dr. Glazer places three puzzle pieces on the floor randomly, which together clearly form a bird. 

“Greyson, can you put the puzzle together for me?” I hold my breath knowing we have arrived. This is the real part of the test, please, God, make him perform. Why did Dr. Glazer use so many words? Greyson isn’t going to understand him. Greyson touches one of the pieces with interest and then immediately goes back to focusing on the toy truck. Dr. Glazer tries again. Greyson ignores him. I grab my paperwork and get down on the floor too, hoping my presence and coaxing will motivate Greyson. I wish I could just do it for him. “Grey- do puzzle,” I plead.

“Let’s try something else.” Dr. Glazer pulls out a laminated spiral book of pictures. He flips to a page with a turtle, a baby bottle and a bear. “Greyson, which one do babies drink from?” I silently beg Greyson to answer, already knowing he doesn’t comprehend what’s being asked of him. He stares off in the distance blankly.

I have to stop this crash before it happens but I don’t know how. I am in a nightmare and my legs won’t work and my mouth can’t speak. “Greyson was mostly breast-fed,” I finally spit out. “And he hasn’t had a bottle for a year,” I explain. “We don’t have any friends with new babies either.” Coming up with excuses is getting exhausting, especially because I make myself believe them. But in the spaces of quiet at night, my excuses no longer make sense to me and the demons are right. And here at this appointment, everything feels like an excuse. 

After a few more mostly unsuccessful exercises, Dr. Glazer returns to his desk and begins to flip through our chart. While I am deeply engrossed filling out my last questionnaire, the opening of the office door startles me. I whip my head around and see Greyson attempting to leave and already half way out the door. 

“GREYSON.” I stand up and walk to the door, Greyson is already out in the hall now, quickly moving ahead. “STOP.” He wants me to chase him. He thinks we are playing a game. “Come here right now,” I say sternly. Greyson hesitates and his forward movement stops. He slowly turns around and as soon as he catches my eye he breaks into a sly smile. We stand together in a draw. I hold my ground and after a few seconds he walks back to me and we reenter the room. Greyson grabs his truck and climbs up onto the chair right next to mine. I sit back down and finish the remainder of the questions. I hand the final report back to Dr. Glazer, who is busily reviewing the first form I filled out. I was told by our caseworker that it would take months for Dr. Glazer to review the data in order to issue a diagnosis and a report so I begin to gather our things.

“So, once you have figured everything out, will you just mail your report to me, or will I need to get it from our caseworker at CVRC?” I’m relieved our appointment is over because I need to get out of this room before all the oxygen is completely gone. 

Time stops and Dr. Glazer answers, “Actually, just give me a minute, I can tell you today. I know you mentioned your husband is out of town though, so if you would like to wait a few months until I issue a formal report, that’s fine too.”

Now that I know it’s an option, I realize how desperately I need to know right now. For a brief second I am afraid he won’t tell me, and I need to know as if my life depends on it. I will grab him and beg and shake him if I have to. If he already knows, then I must know too. The sound in the room is gone and all I hear is my heart pounding.

“No, you can tell me,” I say boldly with a confidence that’s real this time. “Trust me, I have super powers, I can handle it.” He finishes up his marking and flips back to the notes section of Greyson’s chart. He sets down his pen and looks up into my waiting and hopeful eyes. 

“Chrissy, your son fits the diagnostic criteria for autism,” he says gently with the kindest eyes. 

His words slice through the air and cut me. I can’t hear what he says next, I just sit there and bleed. He ruined it. He said it out loud and now we can never go back. I hate him. At least I want to hate him except I know he is right. My face is stinging and all my energy and fear and anxiety flies out of my body, and I am left only with unbearable sad. A couple of angry tears fly out of my eyes before I can stop them. DO NOT CRY UNTIL YOU GET TO THE CAR, I scold myself. I hate that I am so weak. I hate that I am so na├»ve. THIS IS NOT ABOUT YOU CHRISSY. THIS IS ABOUT GREYSON. My skin is too tight and in flames and I want to rip it off. This isn’t what I signed up for. This is not the motherhood I wanted. I’m shocked at how crushed I am. I thought I was prepared for anything today, but I wasn’t at all. I could have never prepared myself for this. WHYMEWHYMEWHYMEWHYME? runs on a loop in my mind.

I secretly hoped the Doctor would tell me Greyson was actually allergic to the color green at today’s appointment. He and I would laugh at how hard of a struggle it has been for the past year and how easy it was going to be to fix. “I can't believe I didn't think of that- GREEN! ” I’d say slapping myself on the forehead. And I would go home and eliminate green from our life, and the light in Greyson's eyes that used to sparkle and stop strangers would come back to me. 

But that is never ever going to happen because Greyson has autism. 

If people could die from sad, these would be my last moments on earth. My gums tingle, my brain zings and my fingers feel numb. I focus on breathing in and out. I can’t look at Greyson, content on the floor because I failed him. I didn’t protect him from everything like I’ve always promised. “Greyson has autism.” The words feel foreign and metallic in my mouth. I want to fall onto the ground and push myself into a corner and scream over and over until I wake up from this dream. I want to die. Instead I pretend to be a functioning human. I stay in my chair and look down at the triangular pattern in the navy commercial grade carpet and stare until my vision goes blurry from tears, Dr. Glazer's voice is faint in the background and sounds like a foreign language. I beg myself to focus and listen.

“Basically to get an autism diagnosis someone needs to have a communication delay, trouble with social interactions and rigid and repetitive and behaviors. According to the information you gave me that sounds like Grey. Right?” I nod my head yes, for once the silent one. “It’s really that simple. Now I know the guy who wrote the DSM-IV - that’s the bible we use for diagnosing mental disorders, and I’ll tell you it’s bullshit. Your son doesn’t have autism the same way I see other kids with it - kids that slam their head against a wall and aren’t able to learn from Behavior Therapy. But still he fits the diagnostic criteria, so I don’t feel bad about giving him the diagnosis. Besides, he actually needs the services that come along with it in order to learn. Greyson does what you tell him to do; like when you got him to come back in this room. I don’t know why he does - maybe to please you or maybe to avoid punishment, but either way he listens to you. You are really lucky. He’s good, and with the hard work and results you have already seen, he’s gonna be really good. You gotta work your ass off, and so will he. But this kid is gonna be good.”

I can’t help but feel if the circumstances were completely different, I would really like this guy. Greyson crawls from his chair onto my lap. I hold him tight to ease the unbearable ache and to stop my hands from shaking. The stupid shirt didn’t save him from an autism diagnosis, because he has autism. He couldn’t point out a baby bottle because he has autism. He doesn’t talk to me because he has autism. I can’t believe all the answers to all the questions all along is autism. I gave birth to him, I spend every single day with him, and I didn’t even know he has autism. I don’t deserve to be his mother. I don’t deserve to be a mother at all.

I finally am able to take a deep breath in. I need to concentrate for my son. I need to stop this or fix this or make it go away.I am amazed by this man’s ability to simplify hours of Googleing and a stack of books on my nightstand so succinctly. For thirty minutes we just sit and talk. We discuss studies, therapies and brain scans, fishing and cameras. In another life this might have been an enjoyable conversation. I look down at my paper to see the notes I have taken, and all that is there are three squiggly lines. 

I rise and shake Dr. Glazer's hand: “It was nice to meet you…well kind of.” I smile. “Minus the whole ‘you diagnosed my son with autism’ part. And although it was a pleasure, I hope I never have to see you again.” Parker’s face flashes before my eyes. There is no way I can go through any of this ever again. It would kill me.

We walk out of the building, my little buddy and me, and stand before the wall of reflective windows. I see the image of Greyson and I looking back. He looks so little, so innocent, so perfect. He has no idea what just happened inside this building. I hoped the past year of Early Intervention preschool, Speech Therapy and Behavior Therapy would stop this particular inevitability, and the fact I couldn’t stop it is unforgivable. We look exactly the same as we did when walked in, yet everything has changed. There is the smallest part of me that is lighter inside and feels a strange sense of relief. Like I found the missing body so now I have permission to move on. The past year of painful and haunting worry at least has a name now- autism.  I mostly feel a massive and suffocating grief, and then guilt for feeling such disappointment, as if I am disappointed in my son. I take a picture of our reflection, wondering if some day these details will be foggy and I may want to remember them. 

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Somewhere deep inside in the place where things make sense, I know that despite a medical and scholastic label on a chart he is still the exact same wonderful boy I am crazy in love with. He teaches me about patience and different, unconditional love and determination. He is so perfect and so beautiful that I still can’t believe that he really belongs to me. He makes me believe in God and in magic. He doesn't talk much, but when he does, he lights up my whole world. This is my son, Greyson, and he has autism. I can’t change that fact, so I am just going to have to find a way to change the world for him.  

We walk to our car and I snap Greyson safely into his car seat, feeling exceedingly ironic that I am attempting to keep him safe right now, yet I didn’t save him from autism. I get into the driver’s seat and I shatter. I lose the spine of composure that had been holding me together. I break apart, forcefully shaking, whimpering in pain and sobbing into too many scattered pieces to count, and I know I will never be able to put them back together the same again.