On a hot morning in late August, my kids and I piled into the car all excited to meet Matthew’s Kindergarten teachers on the day before school started. It was Kindergarten Orientation or “Meet the Teacher Day”.
Five minutes later, we pulled into the school parking lot,
and it felt the wind was knocked out of me. Why do I always forget that there
is a world out there full of typically developing peers Matthew’s age, who can
do all the things that he can’t do? I watched as the two young boys in the car
next to mine opened their own car
doors, got out of the car independently,
and stood still as they waited for
their mom to tell them they could safely walk over to her. My mouth dropped open. Would that ever happen for us?
|Matty on his first day of Kindergarten, 2010|
I had my brief moment of heart ache as I watched all the smiling and showered moms with their obedient kids in tow, easily walking into the school. My walk into the school would be less care free. Walking anywhere with a child who has autism is stressful. Will he dart into the parking lot? Will he grab for a child’s baseball hat in passing? Will he pull his pants down to check if his underpants are wet? I was determined to wear a smile, too.
I took a deep breath as I gathered the strength and energy it would take my sleep deprived and un-showered self to unbuckle both of my kids from their car seats, hold their hands tightly through the parking lot, and enter the school. Have you ever held the hand of a child with hypotonia? (That is the medical term for low muscle tone – many children with autism also have hypotonia). For Matthew, it’s a limp hand that belongs to an uncooperative body. His body doesn’t move at the same speed or in the same direction as I’m attempting to guide him. Why did it look so easy for those other moms? We weren’t halfway to the school door yet and I was exhausted. This was several years ago and I hadn’t grown my thicker skin yet. Whenever I was faced with observing what same aged peers were able to do, and in turn what their parents had the freedom to do, I was frozen, numb.
|Holding Matty's limp hand...hypotonia.|
Yes, my motherhood journey is less care free and more exhausting than many other mothers I know. I am holding a limp hand – a hand that needs constant supervision and support. I am still learning how to guide that limp hand, and like most moms will admit, some days I do it with confidence, and other days with uncertainty
This year, six years after the Kindergarten orientation, Matthew entered 6th grade in a new school and a new town. Of course, we went to meet the teacher day (here it is called the “Meet and Greet”). He is in a very small class for students with disabilities who require the most support in the school. Matthew was excited to meet his teachers, and when I parked the car, he opened the car door safely on his own.** I wore my thicker skin – the skin of experience. I was showered and well rested. I didn’t worry about him pulling his pants down or grabbing another student’s hat in the hallway. We met his teachers and support staff - he may have even charmed them. I breathed deeply. I am finally done comparing what peers can do that Matthew can’t do. Sure, other 6th grade boys were going to play football or soccer after the meet and greet. Many peers his age were planning to walk into town to get ice cream or a snack with their friends. I am more focused on what Matthew CAN do. He can make me smile and feel so loved with his giant hugs. He is polite and loves to meet new people. He smiles and jumps for joy at the smallest moments. I’ll take hold of that limp hand and continue down the less care free and more exhausting road that Matthew has led me on for 12 years now. He is my daily reminder of what is really important in life – human connection and celebrating the small joys each day.
|We are on this journey together - for that I am so grateful.|
** I do still keep Matthew’s car door on “child lock” in the backseat, and he does still have to hold my hand in parking lots. But, now that his younger sister is allowed to sit in the front seat, once in a while on very special occasions, I allow him to earn sitting in the front. Of course I hold both of his hands in my right hand as I drive with my left hand…just in case! He is quick!