“Come on, you have your ear protectors on. It will be fun. Remember you wanted to go to the movies?”
The three of us stood there, Katherine Elizabeth and myself, juggling popcorn buckets and drink cups, in the hallway just outside the entrance to the room where our movie would be playing. Wil sat on the floor, smack dab in the center of the entrance. We had made it this far with very few signs of resistance, then plop! He wasn’t going in.
Looking back, there were a few small red flags. When I ordered popcorn, Wil said he didn’t want any <red flag>. I ordered him a small bucket knowing he would change his mind. When it came time to fill up his drink cup he perked up. He reached up to press the button of his drink of choice, slid his cup under the fountain and filled it to the top. He was one happy guy holding his cup walking down the hallway <red flag down!>. All four of us walked down the hallway with our treats, until Wil came to an abrupt halt just as we were about to enter the room. Plopped on the ground. And here we were.
“Wil if you aren’t going in, can you at least scoot to the side so people don’t have to walk around you to get into the movie?” A few kids that sat on the couch across from the entryway were staring at us. It’s always strange to be stared at. But I think it’s a good thing. This is our normal. Everyone has their own version of it, and the more we see other forms of normal, the less we fear them.
Wil scooted across the floor away from the entrance.
“Great, job, Buddy. So what is going on here? It’s not that loud in there. And you wanted to see the movie. So can you help me understand?” I received no response, though I really didn’t expect one at this point.
“It’s going to be a funny movie. Hey, we might even laugh til we wet our pants. How about that!” He looked up at me, with the faintest smile like he really wanted to laugh, then put his head back down. He wasn’t ready to be that open yet.
“Is it the popcorn? You don’t have to eat it.”
The previews started rolling and Katherine wanted to go in to watch them. “Mom, I can carry in Wil’s popcorn and pop.”
“Thanks honey.” Katherine gave a big bear hug around both her and Wil’s popcorn buckets with drinks in each hand and made her way into the theater. I thought of all the times the girls need to be patient. Katherine, Elizabeth and I all need to work as a team. While Katherine took in our supplies, Elizabeth stayed out with me to help encourage Wil into theater. This is our normal. People were streaming by us into the theater. Wil remained un-phased by the traffic and the boys staring on the couch.
Elizabeth worked on convincing Wil to enter the theater by asking more questions with very little response. For whatever reason, Wil resists piggyback rides from any of us except Elizabeth, so she pulled out the big guns, “Wil do you want a piggyback ride?” This is not so easy anymore with Wil weighing 104 pounds. He stood up and Elizabeth gave him a ride into the theater. Once he was in the theater, it was like he crossed a mental barrier as much as a physical one. He laughed as he reclined his seat. He asked to hold his own popcorn and placed his drink in the cup holder. And, as promised, we did laugh during the movie, but thankfully evaded any pant-wetting.
The previous week when Wil and I went to the same theater for a Down Syndrome Support Team event to watch Frozen 2, there were multiple other kids with Down syndrome who also decided that they did not want to enter the room where the movie was being shown. My guess is they were full of excitement to see Frozen 2, but when at the threshold, they found some part of the experience overwhelming. Be it a new room, anticipation of the event, concern of loud noises in a populated room or experiencing the unknown. Without the verbal communication skills to express those emotions, the physical communication is expressed as coming to a complete stop as to stop what is happening. On this particular occasion, Wil entered the theater without incident on that day, but I fully understood what was happening with the kids stopped at the entrance, as did everyone else in our Down Syndrome Support Team. There was no staring with the wonder of what was happening. This crowd of parents and siblings have all had been there, done that. This is our normal.
When Wil was very young, we were part of a playgroup. Wil’s favorite pastime was to find the door and escape as quickly as he could. I had to keep an eagle eye on him or he would be gone. I had to leave the twins with another mom and chase Wil down the hall again and again. He was the only one who did that with very few exceptions. Most of the kids were content at that age to play together or with all of the toys in the room, or if upset, sit down crying. But not Wil. His intent was to escape at any chance he could find.
Then I started hosting Down Syndrome Support Team play dates. 90% of the moms there spent the majority of their time with the same eagle eye, because their kids first priority was to exit the door. As challenging as it was, it was all of our normal.
Katherine, Elizabeth and I recently went shopping with Wil. We all know that our time is limited when shopping with him as he will run off or take a seat in the middle of the store when he is tired. We watch for the cues. It’s a team effort. We went to one store and I took him for a walk while the girls shopped and tried on outfits. Wil and I would circle back around to where the girls were shopping so I could see what they liked, or answer a question, then we’d circle around again. We made it through that store without incident. Then onto one other store. We tried the same tactic but I could tell Wil was falling apart. He started running and taking off. I saw a friend, Julie, shopping with her daughter. I waved and said hello as I followed the top of Wil’s head through the aisles of clothes.
She said, “How are you doing?”
“You know, just chasing Wil as per usual!” Julie knows Wil, has 4 kids of her own, and is a teacher, so no explaining was necessary. She nodded her head and smiled.
Following Wil, I ran into Elizabeth. I told the girls we had limited time. Elizabeth said that was fine, she didn’t see anything she liked anyway and was ready to go. We walked together, following Wil, to give Katherine some extra shopping time. For whatever reason, during Wil’s running he decided he wanted a vest. A $250 North Face vest. He pulled it off the rack to show it to me. I agreed it was really cool, because it was. But he was not getting a $250 vest as cool and well made as it was. He was not happy with that and decided to run around the store again. When he gets like this, I prefer he stay on the move, because if he drops on the floor, it’s really hard to get him back up again. The flip side is, he can easily decide to run out the door.
Elizabeth and I both looked at each other and telepathically exchanged it was time to go. Elizabeth said, “I’ll text Katherine to meet us at the car.”
I told Wil we were leaving and he made a sprint to the door. I put my arm around his shoulders and slowed him to a walk.
“Why your arm on me mom?”
“Because we are headed to the parking lot and we need to be safe.”
“So I’m not flat like a pancake.”
“Exactly.”
We made it to the car, then off to lunch. It was time for us all to sit in one place and enjoy some time together, which is exactly what we did.
Elizabeth came home from school one day and shared with me that her gym teacher, Mrs. April Stewart sat down with her and a few other friends. Elizabeth said there was some downtime in the class and Mrs. Stewart shared some stories about her sister with Down syndrome. Elizabeth said they laughed about the similarities between Mrs. Stewart’s sister and Elizabeth’s brother. How they could be absolutely unmoving and headstrong, but also openly and unconditionally loving. Elizabeth told me how special these conversations are to her. She said you really can’t understand what it’s like to have a brother with Down syndrome and it’s hard to explain. But Mrs. Stewart really understands. She said that she also likes the others in the group to hear these stories so they can understand, too. Elizabeth said sometimes Mrs. Stewarts gets tears in her eyes talking about her sister. She knows she really misses her. I had tears in my eyes too after Elizabeth shared this with me. (April and I met at a basketball meeting for our daughters, Elizabeth and Maggie. April saw Wil running around the gym and asked if he was my son. She then shared she had a sister with Down syndrome. We instantly became friends with our special chromosomal bond.)
In many ways I feel like we live in two different worlds; the typical world and the Down syndrome world. In our Down syndrome world, what Wil does is completely normal behavior. The stops at the entrance of the movie theater when it all feels too much. Or the sprints out the door when the shopping has gone on too long. But Wil has two typical sisters and we live in a typical world. So we must balance the two. Wherever we go we must be prepared. It’s is always a guessing game of how long Wil will last, and watching for the cues of his being tired. Because the typical world moves much faster, is a lot louder and has much less patience than the Down syndrome world. In the Down syndrome world we stop when we feel overwhelmed. Or we bolt because it’s much more appealing to run down an open hallway than to be overstimulated by the multitudes of activity crowded into one room. In the typical world we crave this activity, more is better. We crave distraction, and we must pack in as much as we can in a very short time.
It is a delicate dance to balance the two worlds. Katherine and Elizabeth understand this dance and they do it very well. I’m always amazed at how well they roll with it and we make it all work as a team. I’m thankful for the Mrs. Stewarts of this world. It’s of great importance for Katherine and Elizabeth to know others who balance these two worlds. These friends are our bridges–where our normals are broad and in-between; it is a place we can laugh and cry together with no explanation needed, because our understanding is whole on this well-traversed common ground.
WILingness 