Children, just like adults, have ups and downs, highs and lows. They have areas that they excel at and things they need to improve upon. These highs and lows are all part of growing up, part of life. For neurotypical kids, the highs and lows of development tend to be like the kiddie coasters they set up for a week at the local county fairs and carnivals. For example, a child who can speak full sentences at 12 months of age, but stuffs his pacifier in his newly purchased Pottery Barn backpack on the first day of preschool. For the mother of that child, she is riding that kiddie coaster too. She bragged for months about her perfectly articulate child then later made up any excuse she could to justify her pre-school pacifier toting child while she mentally calculated the orthodontic bill certain to be in her future. We have all been there. For some, those days just tend to be a little more extreme. If you were to graph the highs and lows of a neurotypical child's development and abilities the graph would appear fairly even. A nice, gentle roller coaster of peaks and valleys. A child on the autism spectrum's graph of development and abilities would look more like the peaks of Mt. Everest and the lows of Death Valley.
Yes, the highs and lows of autism tend to be more like the Comet rollercoaster at Hershey Park (your welcome for that free plug Hershey. Please send chocolate) so you might just need a barf bag. Like Comet, the Negative G's may be record breaking, but the Positive G's may be heart dropping (that's coaster lingo for all you waiting at the exit purse holding people like me).
Autism spectrum disorders occur at various levels of cognitive abilities. Those kids on the spectrum with high intelligence (like my Ryan) tend to have unevenly developed skills. They may be near genius level with their non-verbal skills, but their verbal skills may be way, way, way below most children their age. These kids may have memory and visual skills that are off the chart, yet their abstract thinking may be virtually non-existant. Dustin Hoffman played an autistic man with savant like abilities in the movie Rainman. Most often these savant skills are in memory, mathematics, music and art. Sadly, for many people this portrayal of autism is all they know and only about 10% of people with autism have savant abilities, therefore, Rainman most certainly is not a representation of the majority of kids on spectrum. No, Ryan will not be able to count how many toothpicks you drop on the floor in record time, so please don't ask him to try and rest assured he will tell you to count them and pick them up yourself since you were the clumsy oaf who dropped them in the first place
Autism spectrum disorders occur at various levels of cognitive abilities. Those kids on the spectrum with high intelligence (like my Ryan) tend to have unevenly developed skills. They may be near genius level with their non-verbal skills, but their verbal skills may be way, way, way below most children their age. These kids may have memory and visual skills that are off the chart, yet their abstract thinking may be virtually non-existant. Dustin Hoffman played an autistic man with savant like abilities in the movie Rainman. Most often these savant skills are in memory, mathematics, music and art. Sadly, for many people this portrayal of autism is all they know and only about 10% of people with autism have savant abilities, therefore, Rainman most certainly is not a representation of the majority of kids on spectrum. No, Ryan will not be able to count how many toothpicks you drop on the floor in record time, so please don't ask him to try and rest assured he will tell you to count them and pick them up yourself since you were the clumsy oaf who dropped them in the first place
Ryan's memory has always been fascinating to me. Whether it was his built in GPS, his ability to memorize movies, videos, television shows or muscial notes, he constantly had my jaw dropping to the floor. His ability to recognize letters and read words at the age of 2 made me feel like I just reached the top of the coaster with my hands held high over my head. However, when I would ask him questions and he answered me with the same question while looking out of the corner of his eyes instead of directly at me and when I went to pick him up at daycare and he was playing alone EVERY SINGLE DAY, it felt like I had fallen off the coaster and been run over by one of the cars. Ryan could do math problems and tell time long before he stepped foot in an elementary school, yet his language was made up of phrases and words he had heard before either from one of us or the television. Rarely, did Ryan make up his own speech. And how could a little boy love his mommy, daddy and big brother so much, but not give a hoot about the kids he had been in daycare with for four years? Yep, ups and downs, highs and lows. I never liked roller coasters.
Ryan always allowed me to snuggle him, which I am so grateful for because some kids are so sensitive that even a hug from the one person they trust most, physically hurts them. Up until he was almost two years old, Ryan rarely hugged back. He would let you cuddle and hug him, but it was never reciprocated. I remember the first day he hugged me back. We had just gone upstairs and when we reached the top of the steps, I bent down and gave him a big squeeze because I am a chronic snuggler and I cuddle and hug every chance I get. Well, on this day, my beautiful boy wrapped his arms around me and said, "ahhhh...". I was transfixed. Afraid to move for fear I would break the spell only to realize I had been dreaming. As he all too quickly dropped his arms and toddled away reciting (the proper word is scripting) his favorite Thomas the Tank Engine video, I knew I was wide awake and once again at the summit of the roller coaster. My how I had longed for this moment. Greedy mother that I am, I quickly asked for another hug to which my sweet boy emphatically told me "No!", so I savored the moment praying that one day he would wrap those chubby little arms around me again. Now I get hugs any time, all the time. In the moments when I'm in the kitchen cooking " a gross smelling dinner" or when I"m in the laundry room with an arm load full of soft cotton Hollister tshirts, and Ryan says, "c'mere...I need some of this" as he wraps his not so little arms around me, I try to remind myself the laundry and dinner can wait. My beautiful boy and I waited long enough. Yep, front car, top of the coaster is the best seat for sure. Now plunging at high speeds in that seat at a 90 degree drop is another story.
My 90 degree drop moment occurred right after Ryan turned three. We were at big brother Kyle's soccer game. It was a sunny, windy fall day. All the siblings of the soccer players were running around kicking a ball and playing. Not my boy. He was too busy trying to crawl back into the womb. That is not an exaggeration. The sun was too bright, the wind was, well, too windy and the referee's whistle was too loud and Ryan was completley freaked out. He was on my lap burying his face in my chest, stomach and legs in a feeble attempt to block out the wind and sun while covering his ears from the ref's horrible whistle. I tried desperately to coax him off my lap and go play with my friends' Clueless and Denial's kids, but he wouldn't budge. I thought if he would just get off my lap and go play he would be distracted enough that the wind, sun and whistle wouldn't bother him. I was so uneducated and naive in those early days. If Thomas the Tank Engine would have chugged by with a freight train full of Jello Vanilla Pudding and white plastic spoons, that boy would not have stopped his quest to return to the sunless, windless, whistleless womb.
Needless to say, with Denial and Clueless sitting on either side of me in our soccer mom issued camp chairs sharing cappuccinos, I was anxious and frustrated. "Just go play" I shouted in my Wal-mart mom voice (you know the one I mean) while his chunky thick soled New Balance sneakers were pinching and ripping my flesh and tearing out the hair on my legs (It was fall, remember short season was over so cut me some slack). As I glared at the laughing, smiling, not holding their ears children playing happily with the sun in their face, the wind in their hair rolling in the tall, tickly grass, completely oblivious to the teenage referee blowing his whistle every five seconds caught up in his newfound power, I despised them. Yes, I know it wasn't their fault, but I blamed them anyway. Why didn't they sit on their mother's laps hating the sun and wind and covering their ears so I wouldn't feel so bad? Children are so selfish.
Eventually, I left Kyle and Dan at the soccer field and packed up my sensory overloaded child and went home. I had no idea if Kyle's team won or not, but I knew I felt defeated. When we got home I was emotionally spent and I felt like I just got out of the boxing ring with Sugar Ray. Between the shoe prints all over my body and the whacks to the face from Ryan's large, hard head I felt beaten and scared. Scared that something was really wrong with my baby. You know how fear sometimes takes an ugly turn? Like when your child almost runs out onto a busy street and instead of hugging him and telling him how glad you are that he is okay, you snatch him by the arm and scream in his face. Fear took over my brain and my heart as my roller coaster plummeted to the ground. I looked at my beautiful little boy who was so happy to be in his safe home out of the bright sun, the hair blowing wind and the unescapable loud whistle and I said (I promise I'd be AWEnest...gulp), "Why can't you be normal like those other kids?!!" Oh. My. Gosh. There it was. I said it...out loud. I had felt it in my heart and I had thought it silently inside my own head, but I never, ever gave THAT thought a voice. The Positive and Negative G forces of this da** roller coaster just crushed my heart to a pulp and I jumped out of my car and collapsed into a heap on the tracks.
Meanwhile, oblivious to my smashed heart and collapsed body, Ryan just kept rolling his Thomas engines on their tracks scripting and smiling away. I know he heard me because kids on the autism spectrum hear and understand so much more than they let on. Whether or not at the age of three he understood what those horrible, awful words meant, I don't know, but I've been trying to make it up to him every day since. Oh, and I have also decided to pay for any therapy bill he may need as an adult. What kind of mother says that to her child? I knew that moment would forever be emblazoned in my brain and my heart...what was left of it. I can still see the shirt he was wearing and which engine he was rolling. James, the red engine. Same color as my pulverized heart.
My heart may have been crushed on the tracks, but, fortunately my brain is still able to recall a discussion a few years later that occurred in an occupational therapy office waiting room. As I shared my heart dropping moment with the other moms who were at the same amusement park with me riding their own coaster, one mother looked at me as both our eyes welled with tears, and with a big AWEnest smile she said, "Oh honey, if that's the worst thing you have ever said then you are a great mom." I loved that woman not only because she "got it" but because she was right. Ryan and I have had our ugly moments as we try to understand and live in each other's world. Sometimes it seems as the child gets bigger, the ugly moments get bigger too. There have been many days where I think he deserves a better mother than me and that's where my husband, my family and my girlfriends, wearing their medals of honor, pull me off the tracks and sit me upright in my coaster car. Just like the other mothers in that waiting room and mothers everywhere, until you have sat next to me in my car on my roller coaster, you can't judge me (and in case you are, it may make you feel better to know I cried while typing THOSE awful words).
I no longer harbor angry thoughts towards those soccer player siblings who were so happy and uneffected by sun, wind and whistles. Today, those children may be super star athletes, hanging with the "in" crowd and wearing all the right clothes, but I bet not one of them knows where the country of Bahrain is located. I would bet my soccer camp chair that not one of them knows how many deaths occurred in PA by tornadoes in 2011. And I would stake it all that not a single one of them has the gift of perfect pitch. And as those kids now pull away from their mother's at the bus stop or in the mall for fear of looking like a baby or being uncool in the eyes of their friends, my Ryan still jumps in my arms and loves me up regardless of location or crowd. Go on and be cool, we could care less.
Whether it has been Ryan's development, cognitive abilities, or my emotions, having a child on the autism spectrum truly has been a Comet like roller coaster ride. Once the amusement park attendant snaps you in and pulls down your lap bar, there is no opportunity to say, "I'm sorry, I've changed my mind I would like to get on the kiddie coaster instead please." As Ryan's mother, I own this coaster and it is mine to ride alone although it's nice to have your husband, family and friends waiting down below holding my sunglasses and purse. And as my heart and stomach bottom out from the 90 degree drop, I try to remember that just around the banked curve is another climb to the top so I white knuckle the grab bar and hold on tight. The drops may make my heart stop, but the view from the top is glorious.
Needless to say, with Denial and Clueless sitting on either side of me in our soccer mom issued camp chairs sharing cappuccinos, I was anxious and frustrated. "Just go play" I shouted in my Wal-mart mom voice (you know the one I mean) while his chunky thick soled New Balance sneakers were pinching and ripping my flesh and tearing out the hair on my legs (It was fall, remember short season was over so cut me some slack). As I glared at the laughing, smiling, not holding their ears children playing happily with the sun in their face, the wind in their hair rolling in the tall, tickly grass, completely oblivious to the teenage referee blowing his whistle every five seconds caught up in his newfound power, I despised them. Yes, I know it wasn't their fault, but I blamed them anyway. Why didn't they sit on their mother's laps hating the sun and wind and covering their ears so I wouldn't feel so bad? Children are so selfish.
Eventually, I left Kyle and Dan at the soccer field and packed up my sensory overloaded child and went home. I had no idea if Kyle's team won or not, but I knew I felt defeated. When we got home I was emotionally spent and I felt like I just got out of the boxing ring with Sugar Ray. Between the shoe prints all over my body and the whacks to the face from Ryan's large, hard head I felt beaten and scared. Scared that something was really wrong with my baby. You know how fear sometimes takes an ugly turn? Like when your child almost runs out onto a busy street and instead of hugging him and telling him how glad you are that he is okay, you snatch him by the arm and scream in his face. Fear took over my brain and my heart as my roller coaster plummeted to the ground. I looked at my beautiful little boy who was so happy to be in his safe home out of the bright sun, the hair blowing wind and the unescapable loud whistle and I said (I promise I'd be AWEnest...gulp), "Why can't you be normal like those other kids?!!" Oh. My. Gosh. There it was. I said it...out loud. I had felt it in my heart and I had thought it silently inside my own head, but I never, ever gave THAT thought a voice. The Positive and Negative G forces of this da** roller coaster just crushed my heart to a pulp and I jumped out of my car and collapsed into a heap on the tracks.
Meanwhile, oblivious to my smashed heart and collapsed body, Ryan just kept rolling his Thomas engines on their tracks scripting and smiling away. I know he heard me because kids on the autism spectrum hear and understand so much more than they let on. Whether or not at the age of three he understood what those horrible, awful words meant, I don't know, but I've been trying to make it up to him every day since. Oh, and I have also decided to pay for any therapy bill he may need as an adult. What kind of mother says that to her child? I knew that moment would forever be emblazoned in my brain and my heart...what was left of it. I can still see the shirt he was wearing and which engine he was rolling. James, the red engine. Same color as my pulverized heart.
My heart may have been crushed on the tracks, but, fortunately my brain is still able to recall a discussion a few years later that occurred in an occupational therapy office waiting room. As I shared my heart dropping moment with the other moms who were at the same amusement park with me riding their own coaster, one mother looked at me as both our eyes welled with tears, and with a big AWEnest smile she said, "Oh honey, if that's the worst thing you have ever said then you are a great mom." I loved that woman not only because she "got it" but because she was right. Ryan and I have had our ugly moments as we try to understand and live in each other's world. Sometimes it seems as the child gets bigger, the ugly moments get bigger too. There have been many days where I think he deserves a better mother than me and that's where my husband, my family and my girlfriends, wearing their medals of honor, pull me off the tracks and sit me upright in my coaster car. Just like the other mothers in that waiting room and mothers everywhere, until you have sat next to me in my car on my roller coaster, you can't judge me (and in case you are, it may make you feel better to know I cried while typing THOSE awful words).
I no longer harbor angry thoughts towards those soccer player siblings who were so happy and uneffected by sun, wind and whistles. Today, those children may be super star athletes, hanging with the "in" crowd and wearing all the right clothes, but I bet not one of them knows where the country of Bahrain is located. I would bet my soccer camp chair that not one of them knows how many deaths occurred in PA by tornadoes in 2011. And I would stake it all that not a single one of them has the gift of perfect pitch. And as those kids now pull away from their mother's at the bus stop or in the mall for fear of looking like a baby or being uncool in the eyes of their friends, my Ryan still jumps in my arms and loves me up regardless of location or crowd. Go on and be cool, we could care less.
Whether it has been Ryan's development, cognitive abilities, or my emotions, having a child on the autism spectrum truly has been a Comet like roller coaster ride. Once the amusement park attendant snaps you in and pulls down your lap bar, there is no opportunity to say, "I'm sorry, I've changed my mind I would like to get on the kiddie coaster instead please." As Ryan's mother, I own this coaster and it is mine to ride alone although it's nice to have your husband, family and friends waiting down below holding my sunglasses and purse. And as my heart and stomach bottom out from the 90 degree drop, I try to remember that just around the banked curve is another climb to the top so I white knuckle the grab bar and hold on tight. The drops may make my heart stop, but the view from the top is glorious.
Pick Up a Duck is no coaster ride, but if Ryan didn't win the prize he wanted his screams were as loud as those coaster riders.
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