It was nine in the morning and Wil was jamming to Luke Bryan. That was not unusual. The fact that it was that late in the morning was unusual.
The previous night, Wil, Katherine, Elizabeth and I went to a dear friend’s Bat Mitzvah. The 13-year-old girl of honor, Lila, is in Wil’s grade at school and one of his closest friends. It was the first Bat Mitzvah the kids and I have attended. Lila’s mother, prior to the celebration, asked if Wil would prefer to sit with his sisters and me, or at the table with his friends. This was a very considerate question, as she knows Wil can be overwhelmed in large groups and wanted to make sure he was comfortable.
Wil’s independence has been growing in leaps and bounds. Last year, I would have answered that he sit at the table with me. Entering the room would be a big question mark with the noise level of a large group of people and a DJ playing music. It’s a challenge to get Wil to sit down at his sister’s basketball games. But if I pull up a chair on the periphery, with his noise cancelling headphones on, Wil will sit and watch the game. The buzzer is too loud and unpredictable. I cannot yet talk him into walking down to sit in the bleachers. Right now, walking through the door with his knowledge of unpredictable noises is a victory. Sitting in the bleachers will come.
I knew, however, seeing the small circle of girls, that are his close friends, sitting at a table with him would not only be a huge feeling of independence but a lot of fun for him. He would want nothing to do with me when he saw them.
Anticipating this, I responded to Lila’s mom to please seat him with his friends, and she said she’d put me at a neighboring table, just in case. Perfect.
When we walked through the lobby into the room where the Bat Mitzvah was being held, Wil immediately saw his friends and ran off with them. The music was playing, softer at that point, and he went in without even the slightest hesitation. No ear cancelling headphones.
When it was time to eat, he sat down and looked around the table like he was sitting with royalty. And he was. These girls are friends of gold. They encourage Wil, they support Wil, they understand Wil, and they are patient when he needs his space. In turn, he gives them his utmost affection and friendship.
Wil dug into his salad when it was served, and the only time I walked over to the table was when the chicken was served. He’d need some help cutting it, and I asked one of his friend’s next to him if she’d help if he needed it, or if she preferred I help. She said she had it covered. Perfect.
The only time I saw discomfort in Wil at the table was when the DJ stopped playing music and made the announcements of the celebration. The noise of the microphone had Wil slightly duck his head. He was holding strong though, because he loved being at that table. There was no way he was going to change that. I made sure I didn’t give it any attention. When the music played again, Wil lifted his head and got back to enjoying time with his friends.
When dinner was over and the dancing started, that’s where it never ended. Once Wil was up dancing, he danced and danced and danced. It was the most beautiful thing to see. All of the kids together, dancing. Jumping, twisting, turning, having the time of their lives, and there was Wil, right there with them. All as one. Common ground.
When Wil was younger, I used to wonder what he would be like if he didn’t have Down syndrome. He’s a good athlete now, but what kind of athlete would he be without 47 chromosomes. He’s an adorable kid, but what would he look like if he didn’t have 47 chromosomes? He’s a smart guy, but how smart would he be if he didn’t have 47 chromosomes? It’s natural to wonder.
I don’t’ wonder like that anymore. As natural as it is to wonder, it’s also natural for those thoughts to fade as you grow with those 47 chromosomes. Wil is Wil. He’s whole as he is. And still, seeing the separation between his abilities and his typical peers’ abilities is a challenging part of this journey. I’m always seeking a common ground where Wil and his peers can come together as one. The dance floor at Lila’s party was exactly that place.
A friend, who now lives in Florida, but came into town for Lila’s celebration, walked over to my table and we started chatting. Her son has autism, and I’ve known him since he was very young. Wil and her son were in preschool together.
“Look at Wil,” she said. “He gives me hope.” And our eyes both filled with tears. Though our sons have their differences, we share a common ground in understanding. Unlike a middle ground, that implies someone must step down, I view a common ground as a place where we all step up–we step up and meet each other at a higher understanding.
Wil and his friends danced and danced and danced. He never once sat down. After a few hours, he finally decided he better hit the bathroom. When he was inside the bathroom one of his favorite songs came on, “Knockin’ Boots” by Luke Bryan. After he exited the bathroom, he sprinted faster than Carl Lewis back to the dance floor. He showed no signs of slowing down.
About a half hour after that song, Wil showed signs of slowing down. But Wil doesn’t really slow down. He dashes then stops. What seems spontaneous to us, has been building over time in him. He bolted off the dance floor into the lobby. Then he plopped down on a couch. I sat down next to him and he turned his head away from me.
“What a great time Wil! With your friends! Are you getting tired now?”
“Hmph.”
“Does that mean you’d like to go, or do you want to stay?”
“Hmph.”
“If you are ready to go, let’s say thank you to Lila and her parents.” He looked at me and said, “Ok.”
He got up and we walked back in the room and he went immediately to Lila’s dad and gave him a big hug. Then did the same with Lila’s mom. Then he walked over to Lila and gave her a hug. He said good-bye to his friends. Then, without another word, he sprinted from the room into the lobby. I thought he’d go to the couch again but when I followed him into the lobby he wasn’t there. I did a quick look around the lobby. The door to the parking lot! I ran out the door, and there he was, walking to the car. <heart skips a beat>
“Wil! This is dangerous! Do not go out without me.” I said as I ran up to him. I took his hand. “We need to go back in and get your sisters.”
“No, the car mom!” Fortunately, one of Elizabeth’s friends was standing right by the lobby door. I asked her to tell Elizabeth and Katherine I was in the car with Wil. She went inside to tell them and Wil and I walked to the car. I pulled up to the lobby area just as Katherine and Elizabeth were walking out.
“Sorry, guys, Wil bolted.”
“Yeah, I figured that’s what happened.” Elizabeth said.
“Would you mind waiting in the car while I say good-bye?”
“Sure.”
“Thank you! Be right back!”
I went inside and said good-bye to our wonderful hosts and friends. “Wil is going to sleep well tonight,” they said.
And he did. When he woke he started the party back up again on his CD player with “Knockin’ Boots.”
Stories of Wil, my son, who has Down syndrome 