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.

Uneventful
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.

10 comments:

  1. Hugs... I cried reading this. You're an awesome mother and your two guys are so lucky to have you.

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  2. I have been following your blog for a couple of years now, Chrissy, and I am amazed at how incredible and loving you are as a Mom! Your wonderful boys are so lucky to have you, as you are them!! You are the perfect Mommy for them - just remember that!
    Shelly
    PS- your writing is very open, honest and intriguing - love how you see the world and its creatures, but this piece, well, it has to be the best that I've read yet! You draw in your audience and take them along for the ride with you - keep writing Chrissy! You're brilliant!

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  3. I feel like I wrote this with your hands.....just change names and that will be our story..3 years has passed and I cry everyday and I wake up in the morning praying this is a nightmare and I am waking up..NO

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  4. I cried reading this; I felt I could have wrote it myself. If you wrote a book I would read it a million times. So thankful for your blog.

    -Colleen

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  5. Awesomely awesome...you need to publish this - I mean truly, put it in a book or a medical magazine or something. It touched me.

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  6. sending you and G and P (and your husband) so much love. this is an amazing post, thank you for sharing your journey and your boys. "welcome to the world. beautiful and terrible things will happen. don't be afraid" (-f.beuchner) - well, F**K that, we are all afraid sometimes!!!!!!!!!!! but still there is so much beauty in your family and your motherhood.... so much precious joy and love. hang in there mama. we are all right here with you.

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  7. I have no words for this. You are an amazing woman, an amazing mother. Like so many other amazing woman and mothers. Hugs and love to you all.

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  8. I too cried while reading this. Lump in my throat and all. Remembering so vividly sitting in that hot, crowded doctors office. I remember staring at the wooden dollhouse (the one my son refused to play with the Doctor) when I received my son's diagnosis. It's been 6 years and yet some days it seems so recent. I have learned to become strong, but am still so fragile. One thing I know; I wouldn't trade who my son is for anything. He is absolutely perfectly who he is supposed to be. And so are your boys. I am one blessed mom. ��

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  9. Wow! This really hit home. My son was just diagnosed on Friday Oct 30, 2015. You captured exactly how I felt! Like although I didn't want to hear it, in a way I did because it explains so much. Now we begin our journey with Alex. Thanks for sharing your story! - Gabi

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