-Today is Smarter, Braver, Stronger Day in our household. Christopher Robin says it best when encouraging Pooh through a challenging time: “Promise me, Pooh, that you will always remember you are braver than you believe, smarter than you think and stronger than you seem.” That has always been our mantra to push through because it is so very true and it typically isn’t physical strength, but emotional strength.
For us we do not label it as World Autism Awareness Day nor Autism Acceptance Day because we are both aware and accepting every day, especially on the hard days. And in honor of this day, today is the last time I will tell this story, because this summer our son will be 18, and then it will be his story to tell.
I remember when he was born, an emergency c-section after a failure to descend. The birth was traumatic to say the least and he had the war wounds to prove it. I didn’t get to see him until 5 hours later, but you know what, I remember thinking he was perfect. And he was.
I remember the nights where he would wake up screaming and I would instinctively take off his onesie and bounce him back to sleep and the endless trips around the dining room table, rocking him up and down just to get him to settle. We loved how he waved his hands and tapped his foot in the johnny jumper for hours. I remember the distractibility as soon as the cat came in the room when he was feeding and then it would take another 45 minutes to get him to finish. I remember making a cement hand print to put in his room and throwing it away because he couldn’t tolerate the wet texture of the clay. I remember him standing on one foot like a flamingo in the yard because he wouldn’t put both feet down in the grass. I remember him only eating thicker foods and not even touching his 1st birthday cake with tears in both his eyes and mine because I didn’t understand his sensory defensiveness…yet.
I remember him getting kicked out of preschool because the school didn’t want any children with behavior problems- that’s why they implemented a behavior plan the third month after we started. They said he was playing with a toy wrong and they didn’t have the time for someone to work with him through transitions from outside to inside. After that, I remember the years of therapy, OT and speech, when my husband would take him weekly without fail. I remember his BSC and TSS come to our home every week to work with him on social skills. I remember when his developmental pediatrician told us his brother would be his best therapist.
I remember the day the neighbor started the boat in his backyard after a long winter and startling him where he wouldn’t go outside for three days in fear of the noise. I remember the headphones he wore as he drove around in his play jeep. I remember him talking to and chasing his shadow, wiggling his fingers the whole way. I remember the millions of flaps those little hands, fingers and toes would make as he stimmed off of spinning objects like a fan. I remember hours of tantrums with transitions and bear hugs on the kitchen floor with both of us in a heap of tears. I remember a backyard full of swings, sand, bubbles, chalk, rock walls and anything my OT brain could think of to increase his tolerance to … well, the world.
As he got older, I remember the awareness, his awareness to his body and his brain. Why can’t my brain think the right way? Why can’t I talk right? Why do people from elementary school talk to me like I am a child even though I’m in high school? Why is the one thing that still hangs on the stimming when I get excited? Why am I so stupid? And then there was this year…a senior year in high school during a global pandemic that was a challenge for all kids, never mind ours. I remember giving him all the strategies to be successful in school, which he applied, and now the game changed to being online, learning in a whole new way, in a whole new environment, and now those strategies didn’t work. I remember the struggle and heartache as 14 years of executive functioning strategies just went out the window as we had to switch gears.
But I also remember the good. Oh, how I remember the good; the successes that may seem so little to some, but are monumental to us. The reason why I am telling this story for one last time. I remember the praises the teachers gave him. “He is so smart.” “If I let him pace, he listens.” “He is so kind.” “He is the sweetest kid I know.” “He is always trying.” And I know for certain he is THE best hugger. I remember being on high honor roll every single school year. I remember the first time he peeled a hard-boiled egg. I remember the first time he wore jeans and a tie. Yup, it’s that simple.
I remember the first day he walked out onto the marching band field and watched this sensory defensive, dyspraxic kid buzz into a trumpet and march to near perfection while drums beat behind him and I just looked at him in awe knowing what it took cognitively and physically to make that happen. And then they all won championships! I remember when he got behind the wheel of the car and drove away to his first job. I remember this Christmas when we surprised him with his acceptance letter to the college of his choice. I remember hikes in Acadia climbing ladders stuck in rocks, paddle boarding on a lake, going to rock concerts and feeling the music. I remember watching him grow into a handsome young man and thinking, “we actually did it.”
These moments are things I never thought would happen when I heard the words, at 3 years old, “pervasive developmental disorder, most likely of the Asperger’s variant”, not yet known as Autism Spectrum Disorder. The criteria includes social interaction and communication deficits along with repetitive behaviors with criteria in hyper sensitivities, stereotypies, fixations on unusual objects and inflexible adherence to routine. These manifestations still rear their ugly head from time to time, when he is stressed or just being a teenage boy, but I cannot begin to explain how proud and awestruck this mama is of her son as he transitions from high school during a global pandemic and leaves on his way to college in a few short months. And I am thinking, he is perfect, but it is now his story to tell.
Excuse me while I get my tissues.
There is hope to all of you April 2nd families out there. It may not be the Italy trip we all planned for, but Holland is a pretty cool place too, even 18 years later.
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