From the moment the word "autism" entered our world, I knew and fully accepted that raising Carter would be full of challenges. Many obstacles that we have faced so far, I have anticipated and met head on. Others, have come in some pretty surprising packages. The most difficult part of being the mother of an autistic child, is that it's incredibly hard for me to look at Carter and not see the autism first, and Carter second. I hate myself for that.
We spend hours each week in speech, occupational, physical, and behavioral therapy. We drive for hours to out of state specialists who are helping us to piece together the puzzle that is my son. We're spending most of our tax return to pay off one of the surgeries that will hopefully keep him from losing his vision. We strap braces on his legs and exercise daily so he can build the strength to do simple things like walk down the stairs. We spend so much time and energy focusing on his differences that it's almost impossible not to see them. I know that eventually, the novelty of all of this will fade and we will be able to integrate his differences more seamlessly into our lives, but that day hasn't come for me yet.
I live for the moments when the veil of autism briefly lifts and I simply see my son - the charming blue eyed boy with the endearing smile; who loves tractors and trains and dancing to music that only he can hear. I am a great mom, but I am far from perfect. I wish those moments weren't so few and far between.
At my last meeting with Carter's preschool teachers, they mentioned that he was making remarkable progress and would definitely be ready for Kindergarten in the fall. Even though integrating Carter into a regular classroom is something that we have been working tirelessly for, and I am incredibly proud of his accomplishments, Carter starting Kindergarten has seemed so distant and abstract up to this point. Now it's real, tangible, and looming ominously in our very near future. It's terrifying.
Preschool feels so safe. He isn't held to rigid academic standards. He and his peers sing songs and learn through play. When Carter is feeling overwhelmed, there is a pretend kitchen area in his classroom where he can go and observe from behind the counter. I can drop in whenever I want. I even get to set his goals, academic and otherwise. Many of his classmates are also in at least one type of therapy and sometimes even join him for his OT sessions. Carter is the only autistic child in his class, but here, it feels okay that he stands out.
Kindergarten feels like a whole different ballgame. A new year means entrusting him to the care of people who have not yet learned to love him. People who may not be as quick to understand when he acts so differently from an entire classroom of other children his age. I know and adore all of the wonderful ladies who will be teaching him next year, but this worries me all the same.
Kindergarten classrooms don't have kitchen areas where he can hide when he's scared. They have lines to stand in and seats to sit quietly in but Carter still lacks the core strength to stay in a chair without taking breaks. They are full of children who don't have accidents and need to change their clothes during the day. Kids who wont understand when Carter absentmindedly reaches up to rub their earlobes or when they see him on the floor rubbing the carpet with his cheek. Kindergarten classrooms are full of kids who are drawing pictures and writing their names, but Carter has yet to hold a pencil long enough to do any of that. Academically, Carter's IEP is what is getting him into a regular classroom. It breaks my heart to think that he will be sitting in that seat only because he has his own set of rules. I'm afraid that once he starts school, he is going to be the child who is always a few steps behind...and eventually, he'll figure that out. It feels like I'm tossing him out into the real world where the pace is too fast and that "autism" label will begin to take on more meaning.
I want nothing more than to just hold him safe in my arms and protect him from the world. Our society makes it so difficult to be anything other than average and I never want him to feel ashamed for being something more. I know that integrating him into a regular class will do wonderful things for him, but I'm afraid of the damage it could do as well. He is such an incredible, fascinating little boy with a spirit that I never want broken. While he is quick to anger, his joy is intense and intoxicating. I'd hate for any part of that to be taken away by him realizing that he isn't like the other kids he spends his days with. I cannot begin to describe how fulfilling my life has become since Carter entered it, but special kids come with their own unique set of obstacles. All I can do is pray that I'm always doing what is best for him, regardless of my apprehension.