Clayton’s birth involved pushing for 2 ½ hours. Then silence filled the room.What is the problem, why so many people around him. The nurse is pushing Tyler away. What is going on. A tube is shoved down his throat. Later, on the home made video Tyler was filming, I see his lifeless little body being flopped about in the hands of gloved doctors...Finally – a meek CRY. Tears of joy and exhaustion stream down my face, to tired to even ask to hold the fruit of 9 months of labor.
I thought this was supposed to be natural – why isn’t he latching on. Why does he refuse to suckle and instead beat my breast, arch his back and scream. “I think you may want to consider formula, don’t feel bad, it’s OKAY,” the nurse tries to persuade as she wheels the tiny bassinet holding our screaming son into our hospital room for about the 15th time. I can barely sit, yet I try and try again – go to ENT’s to have a tounge clipped, lactation consultant after lactation consultant. Tyler and I learn to survive on 1-2 hours of sleep at a time, and then tag team out to be the next to walk the halls with our colicky infant.
Sleep 20 hours a day – my eye!!! Try scream 20 hours a day. This was suppose to be blissful and bonding. Instead we are exhausted and our relationship is straining. 9 months go on. The nursing has taken hold. The bonding still seems out of sorts, not what I expected.
Tyler and I witness small short seizures, “common, they’ll disappear” the pediatrician tells us. And they do. Reassurance from the pediatrician, my own mother and father, my mother in law. My inner gut doesn’t quite by it “oh, well, you are a first time mom” – “all babies do that” – “I experienced that when you were a child, now you see what I delt with. He screams for hours in fits of tantrum. Eye contact is barely existent – but the pediatrician checks this out and says he’s right on track, nothing to worry about. Clayton is so smart and developing quickly – hitting all of his milestones early or at least on time. Walking by 9 months, memorizing books and reading them to me before he is two. His temper tantrums are intense and long winded, sometimes up to four hours.
Baby Gymboree is like torture, screaming every time, same with My Gym, and Kindermusic. My kiddo hates these classes and sits in time outs for infractions while the other kids are overjoyed.I feel robbed of the fun. I am confused by Clayton's obvious distress, among his little blissful baby peers who are having so much fun with their parents. I recieve stares from other Mommy's and the teachers. It is obvious that behind their face is the message, wow, that kids is a brat, glad he's not mine. And I swear, some of those darting glances held behind the silence questions of our home life.
My intuition rides my mind, as I try to quiet my questions and turn my thoughts to prayers to my God. I believe as Clayton's mother that I'm so tightly bonded to him that instinctually us I know things other's don't.
The psychologist dismisses me, and encourages more positive praise for Clayton. More positive praise??? I was known as the “too nice teacher” – I am over abundant with praise for my son. . . how in the hell am I suppose to take that a step farther? We have playdates, he runs into the woods or the street, with no interest whatsoever. And me, his pregnant mother, breathlessly chase him to keep him safe. Forget chatting with the other mothers on the park bench as the children play – mine won’t play. More reassurances from family and the docs – "screw you's - I know I'm right about this" and disdain silently scrolls through my thoughts embedded between doubts of “am I doing this mom thing wrong, even though I think I’m doing it right” followed by “there is no way some of these girlfriends of mine could be this patient – I am sure there is a difference in our kids” and “What the hell is going on??”.
Fast forward a few more months. We move to another state and I brace myself, trying to think of absolutely everything to help ease the transition for Clay. Packing up is rough, increased meltdowns and diminishing Mommy patience. We finally arrive at our new home, 5 hours from our old one. Daddy won’t arrive for ten days. I curl my huge body into his crib sized toddler bed with Clayton each night, providing comfort to Clay and in hopes that he will eventually feel that this is home.
Daddy arrives. Tantrums ensue. Some last 4-5 hours. Food rituals become extreme and I am certain that Clayton is auditioning for Jack Nicholson’s character Melvin in “As Good As It Gets”.
The spoon must be the yellow one with little holes in it. It must be placed on the right side of the plate. God forbid, if you put it in the yogurt – a longwinded screaming and anger fit will ensue and nothing will be eaten off the plate.
I speak with our new pediatrician about this, twice. I tell her that I am worried about his nutrition, as he refuses everything now accept milk, yogurt and cereal. I’ve tried every strategy I’ve heard to get Clay to behave and eat his food – to no avail. The best, was strategy I tried was to not feed him anything, except serving him the plate I’d prepared (a balanced and kid friendly meal I’d prepared with all food groups). He went almost 3 days without eating, and I caved. I was not going to starve my child. This manner was obviously beyond stubbornness or a test of who was in charge. The pediatrician refers us to a psychologist who is a feeding expert. He has a major meltdown in front of the feeding psychologist. She diagnoses him with behavior disruptive disorder and refers us to the Autism team for an evaluation. She will see him at a later date for "feeding therapy."
We go to see the Autism Team. We leave with a diagnosis of PDD-NOS on the Autism Spectrum(Pervasive Development Disorder, Not Otherwise Specified), and are told his diagnosis would most likely have been Asperger’s Syndrome if he was older.
I was strong, thought this was no big deal - and then I cried. . . for days. I couldn't stop crying. Finally, the tears turned to silence. My husband and I walk around like ghosts the next few days – silently grieving, silently wondering what Autism is, wondering what we should do next. We read, we hug Clayton, we cry.
I was relieved to know I wasn’t insane, there really was something different about my little guy, my instincts and intuition told me long before any doctor.
The more I read, the more I was pissed at the world. Early intervention is crucial for kiddos on the Autism Spectrum, the earlier the better for the child. If the doctors, or someone, had only listened to me when he was an infant – we could have started his intervention then. Damn everyone! Clayton would be three in a month, and I’ve known something was “off” since he was 4 months old. We’ve lost so much time in which we could have been understanding him.
I was swimming through an ocean, researching everything I could about Autism, PDD-NOS, Asperger's and what to do next. I read book after book, website after website. How do I help him was my guiding question - what I was forgetting to ask, what I really needed to be asking was. . . How do I remember to love him, just as he is.
Tyler was grieving silently - trying to come to terms that every idea he had about how he was going to raise his son into a man, through coaching little league teams and perhaps on into the college years, just as his Dad had done, was looking differently now. A giant gaping hole of difference. He was grieving the fact that they probably wouldn't share this love of sports, of being athletes. Clayton can't catch a ball, and his gait is ackward. Tyler played college ball.
While Tyler was wondering how he was going to show Clayton everything he had to teach him differently than planned, I was worrying about the facts I was finding in books. . . easily bullied, hard to make friends, many never marry. "My poor baby," was all I could think. The books could paint a pretty bleak picture. I tried to push the negatives to the back of my mind and focus on the positive things I could do for Clayton. I focused on all the wonderful things about him, and how lucky we were that he had such a "mild" case. I poised myself to be his advocate in life, fighting for the best for him and speaking up for him. But late at night, the bleak words from books scrolled through my head and brought back the weeping.
Tyler was angry and silent. I was weepy and trying to figure out how to fix it.
The anger subdues, and God breathes calmness and guidance. I am certain that God was doing that all along, asking us to hand over the weight - it was just that we finally stopped, exhausted, and listened and heard his calm.
We love our little man unconditionally and want nothing but the best, he is ours - entrusted to our care by God. We realize that none of this has changed - the important remains. We have to re-orient ourselves, and figure out what it is exactly that Clayton needs from us.
This poem that Tyler came across helped:
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Perhaps God has intended to teach Tyler and I and the world something through Clayton's Autism Spectrum Disorder: unending patience, love, and total acceptance. He's already taught us that we are stronger and our love goes deeper than we thought possible.
He's taught me that I can endure ear deafening tantrums in the grocery store and the piercing eyes of passers-by. He's taught me that cuddling for hours is the right amount of love. He's taught me to "fight the good fight" and about endurance far beyond the marathon's I ran in college. For example, we sit in Taekwondo for hours and days and weeks, and I learn to ignore stares from parent's whose children are working on the yellow belt. . . because we are working on the "calm down enough to stop crying because it is noisy" and "put your feet on the floor barefeet" belt. He's taught me that kind of endurance is within me and that it is driven by God' love. Clayton's shown me that he can work hard and push through his sensory issues and persevere - the amount of work that takes Clay is equivalent to bringing a skyscraper's building plans into fruition. He really is my wonder boy!
Clayton's sensory processing and PDD-NOS or Asperger's can be treated, but not "cured." He will have this diagnosis all his life. Autism is not taboo, it is not a curse, it is not a disappointment. Clayton is our precious gift from God, the one, along with his sisters, Tyler and I live our lives for. We couldn't be prouder of Clayton! He is our miracle.
The Autism Spectrum is a blessing, a Miracle. Although, not without trials and frustrations, autism is not a curse - but rather a blessing. Without it we would not have Bill Gates, Hans Christian Anderson, Albert Einstein, or Clay Clay the Wonder Boy - just to name a few. It is a MIRACLE! These people are God's miracles, and like all people, they have something to teach, something BIG to contribute. Clayton's autism is a blessing in our home; through understanding of it we will move forward. Clayton's autism has already taught us so much and bonded us so deeply as a family.
"Through wisdom is a house built; and by understanding it is established; and by knowledge shall every room be filled with precious and pleasant riches. - ANONYMOUS" We thank God for teaching us in His mysterious ways. We thank God for our son, Clayton.
