Kari Wagner-Peck with her husband and son.
This past September we started home schooling. Before that our son, who has Down syndrome, attended public school in a regular classroom setting — often referred to as inclusion — at our request. After two years we realised school was hindering his education.
In school, he was hugged and picked up by other children. He was helped by peers whether he wanted it or not. Our son is very small and has difficulty being understood. Even when he yelled, "Stop!" he was mostly ignored. His identity was that of the class mascot. He sat in the back of the classroom while other students participated in group activities, counting to four with his one-to-one aid. At home, he could count to 50.
Inclusion, we realized, works only if everyone involved believes in a child's ability to be included and to contribute something to the group.
The first day of "class" we sat down at the dining room table with our recently purchased certified curriculum. Five minutes in my son said, "No." "You can't say no." But of course he could, and did for days on end.
Our lives, his and mine, became like a postfeminist comedy starring a small, naked tot and an anxious, shrill mother who once worked outside the home and now home schooled. We argued. There was yelling. I wondered if we had made a colossal mistake. When I told my mother about the nudity she shared with me a shocking confession: "Your father was a closet nudist. He said it made him feel free. I made him carry a tea towel around the house."
I thought the wanting freedom was an apt comparison.
I realized we were not in a battle but instead a transition we needed to move through. I needed to neutralize the warring dynamic. Instead of starting with curriculum we made cakes — mostly with blue frosting, his choice.
Next I needed to understand how he learned. In the classroom, the focus had been on him memorizing sight words. I tried that but he would blurt out words that were close but not right. For example, for "that," he said, "hat." For "down," he said, "away." I asked, "Are you guessing?"
"This — I gestured to the table in front of us — is a No Guessing Zone. We will sound out the words instead."
I created "Super Awesome Sentences!" that had meaning for him: "Thor eats cake with Iron Man"; "Spider Man can make blue cake." And one of his favs: "Hulk likes smash cake." Over time the complexity and the length of the sentences have grown. We started learning antonyms. He quickly got those for: "hot," "up," "out," "down."
I said: "Cloudy." He said: "Movie star." That threw me completely.
It wasn't until he said, "Project Runway" after I said, "young" that I cracked the code.
"Are you saying something you know I like instead of 'I don't know'?"
"Did you do that at school?"
"It's O.K. not to know something. From now on when you don't know something just say: 'I don't know.' "
I learned our son needed more time to respond. I was so quick to jump into his silence I didn't realize he simply needed time to answer. Once I figured that out I would count in my head 20 seconds, 30 seconds and sometimes 40 seconds. He would come to the correct answer. That time was not dead space but processing time.
I learned part of teaching was reprogramming the prior limited beliefs bestowed on him. One day I said to him: "You are so smart! I'm proud of you!"
"No," he said, his eyes filling with tears.
"You are. Believe that. O.K.?" No response. Heartbreaking.
The other day he asked to do his reading by himself. I agreed. "Say the words out loud though, O.K.?"
I stood quietly in the other room listening as he read. He stopped suddenly. I peeked in. He was turned toward the doorway looking at me frowning. I was busted. "Hey, I want to do this, O.K.?"
"O.K." I said. This is his path, too, not just mine.
At almost five months of home schooling our 8-year-old son is reading books a typical struggling first-grade child would. He is learning math, handwriting and reading comprehension. The same things we planned on him learning in school.
The difference between school and home is in how I see my son. His guessing at words and his abruptly changing the subject are both strategies used by any child who is unsure of himself. His processing delays can be applied to a multitude of children and not necessarily those with a diagnosis. The lack of belief in one's own ability is something any of us can identify with if we have been undervalued. Even the nudity seems age appropriate and gender specific.
In school, nothing our son did was seen as typical. His diagnosis seemed to be the only lens through which he was viewed. That narrow view translated into infantilizing treatment by peers and underestimating his intellectual ability by staff. Fortunately the lens I use to teach my son is not refracted by his Down syndrome.
This story first appeared on NYT Motherlode, republished with permission.