Why Time Is the Gift My Son With Down Syndrome Needs Most
“The gate is closing in four minutes, ma’am,” an airline representative said to me as I sat on the floor with Wil.
“Yes, thank you,” I said. “I just can’t get him up. I’m trying.” I saw my son Wil, who is 13 years old and has Down syndrome, falling apart about 30 minutes prior to the airline representative’s four-minute gate closing alert. When it started in his mind, I can’t tell you. The physical signs of his shoulders beginning to slump as he muttered to himself were my cues that things were going downhill within him. My guess was what started as excitement for our trip to Florida had transitioned into overwhelm for him.
It’s not that he didn’t want to go — it was the opposite. The anticipation of all there was ahead of him became too much. He’d see my parents, he’d swim in their pool, he’d go to the beach. He loves my parents dearly and the thought of swimming every day was something he’d been excitedly talking about — especially after being homebound for so long with the pandemic. The building anticipation about all there was to do and see was brewing into the perfect storm. Unfortunately, I only had four minutes left to quell it.
When I saw the first signs of Wil starting to shut down, I enlisted the help of my daughter, Elizabeth. She typically jokes with him and is able to turn his mood around. She told me she was noticing the same signs in Wil. She knew something was happening within him and it would soon go downhill fast. Katherine, Elizabeth’s twin sister, was reading a book at the time, so I explained what Elizabeth and I saw happening. I asked if she wouldn’t mind standing by the bags while Elizabeth and I attempted to understand what was happening with Wil. She agreed.
Elizabeth and I began trying to perk Wil up first with jokes, then by sharing stories about seeing Grandma Leigh and Grandpa in Florida. As we talked to him, the line of passengers boarding the plane shortened. Time was running out. With Wil, though, time is what we need on our side. Despite our efforts, he slumped down further. I knew if Wil sat on the ground we’d likely not get him back up. I scanned the room and saw an empty wheelchair owned by the airline. A passenger had used it to board first class and now no longer needed it. I quickly ran over to retrieve the wheelchair and rolled it next to Wil.
“Look Wil! Do you want to go for a ride?” I asked. He looked up at the wheelchair, then down again. Nothing in my arsenal was working. We’ve been down similar roads with Wil before. Each time, we needed time. Then it happened — Wil sat down on the floor. What I did next is not what I wanted, but at that moment I could think of no other options.
“Elizabeth, we have to lift him up. Can you help me?” The two of us lifted Wil and he adamantly refused. The passengers remaining in line to board the plane began to stare. They knew nothing of the build-up of this moment; that Elizabeth and I had been trying to lift Wil’s mood for nearly 30 minutes. The snapshot of time they observed was the force being used.
I felt simultaneously sad and angry; not at the passengers, not at Wil, but at myself. How could I, the mother, force my son against his will? What message did this send to Wil? What message did this send to his sisters? What message did this send to the outside world? That force is the answer? But the problem was I didn’t know the answer. I simply didn’t know what to do in that short window of time to get Wil on the plane. I did know he needed time to process. I did know he needed time to tell me what was upsetting him. I did know, with time, that he would stand on his own and board the plane. The problem was, the plane would be long gone with the time Wil required. Thus, I resorted to lifting Wil into the wheelchair, which he would then slide out of back onto the ground.
When the gate to the plane was nearly closed, I was sweating, frustrated and on the verge of tears. I racked my brain for options: Elizabeth and Katherine could board this flight themselves. They would be 15 years old in a few days and had been on this flight many times. Wil and I would board the next available flight to Florida. But when would the next available flight be? A few hours? The next day? I knew how incredibly distraught Wil would be when the plane left without us. But how could I penalize Katherine and Elizabeth by making them stay back, too?
As these thoughts swirled through my brain, Elizabeth and I continued our final attempts to get Wil in the wheelchair. Moments before the gate closed, one of the airline representatives walked over and bent down to Wil’s level on the floor. “Can you get in the chair –” she paused and looked at me.
“Wil,” I said, “his name is Wil.”
“Wil, can you get in the chair?” He looked up at the airline representative. She was a break in his pattern; he was no longer fighting me or his sister. Hers was a fresh, new face. I took a deep breath full of hope. Please, please, please, I prayed.
“We are going to see his grandparents. He’s very excited for all the swimming he’ll be doing,” I said to the airline representative, so she’d have more personal information to persuade Wil.
“Wil, don’t you want to go swimming?” She asked. “And to see your grandparents? Let’s get you in the chair so you can do that.”
Wil got up, sat in the chair and the airline representative wheeled him to the gate. I then took the handles, and as I did, I looked her in the eyes and said, “Thank you.” She looked back at me and nodded. I couldn’t tell if she understood what was happening or if she thought I was an awful person for forcing my child against his will. Either way, I was immensely grateful for her help, and that she gave our family the gift of boarding the plane together.
One challenge of raising awareness is that the moment of time observed is rarely the full picture. When I saw Wil physically starting to spiral downward, it was over 30 minutes prior to the gates closing, and what was happening in his mind likely started sooner than that. But what the outside world saw was the five-minute breakdown. What message was received in that short five minutes to contribute to or take away from Down syndrome awareness? It’s rarely a black-and-white answer. Rather, it’s a process that happens over time, with loads of gray areas. Though I’ve been raising Wil for 13 years, every day I navigate a new shade of gray.
Once we boarded the plane, Wil was back to his silly, fun-loving self. We had crossed whatever barrier was in his mind. During our flight to Florida, I was already mentally preparing for the flight back home. I thought back over the signs of Wil breaking down — when they happened, how they happened, what happened before the signs, what our conversations had been in preparation for the flight, and so on. What options could I use to prevent this from happening again?
When it was time for the flight back home, my mom packed Wil’s favorite snacks. I downloaded some of his favorite movies and television shows. My mom bought him new miniature toy cars he could play with on the plane. My dad talked to him about how great his flight home would be. We didn’t need a single one of our prepared options as Wil breezed through security and onto the plane without a single halt. It was all gloriously uneventful.
Though it has come and gone, the airport incident stays with me. It’s a puzzle to unfold. A puzzle successfully unfolded with extra time, but what to do when extra time is not a given? Force is not the answer. Domineering someone is not the answer. Anticipation and preparation are part of the answer, as are experience and learning to read Wil’s cues more accurately. As I continue to discover and uncover more answers, I know — now more than ever — that when I do have the gift of time, I need to take a deep breath and take it.
The day after we arrived back home, I decided to make a Costco trip, as our cupboards were bare. Katherine and Elizabeth love Costco trips. We had not been there since the pandemic, so the girls were extra excited at the prospect. Earlier that morning, Wil had gone with me to the school to return his sisters’ Chromebooks and textbooks, as school just ended for the summer. We saw his speech therapist and he enjoyed a conversation with her. Wil missed seeing his teachers in person during the pandemic, so this was a real treat. He was in great spirits, so I was surprised when he immediately turned down the prospect of going to Costco.
“Wil, you love their pizza. Remember those huge slices of pizza?” His answer was still no.
As both Katherine and Elizabeth were looking forward to the Costco trip, I wasn’t about to ask one of them to stay home with Wil. So the question was, how did I convince Wil to go? I knew in time, I could figure out what Wil’s roadblock to going to Costco was. Unlike the airport incident, the gift of time was on my side.
“So, Wil, why don’t you want to go to Costco?”
“Humpf.” (His favorite answer when he doesn’t want to explain.)
“Wil, aren’t you hungry? It’s been a while since you had breakfast.”
“Yeeeeeeees,” he said and looked at me. His sense of humor was there. A great sign!
“Sooooo,” I said mimicking his drawn out “yes.” “Let’s go to Costco.” And I did a little dance. “Mom, you are silly,” he said, laughing.“I know, so are you. Let’s go silly.” I tickled him.
Elizabeth heard the exchange and came into Wil’s room.
“Suddenly I feel very tired,” she said. “I’m going to take a nap.” Elizabeth sprawled out on Wil’s bed. This is a regular joke between them.
“No,” Wil said and jumped on Elizabeth. “This is not Lizbeth’s bed!” Elizabeth fake snored. “Lizbeth get up.” Elizabeth continued to fake snore and Wil bounced on her. “I’ll go on Lizbeth’s bed.” Wil got up and ran toward her bedroom.
“Hey, not my bed!” Elizabeth jumped up and chased him.
“Yes, your bed,” Wil said. Elizabeth bear hugged him before he reached her bedroom and turned him around. They both fell down laughing.
“Ok Wil, let’s go to Costco,” Elizabeth said.
“No!” Wil ran back to his room. I thanked Elizabeth for trying, then went back to Wil’s room. I sat down next to him. He picked up his iPad and started playing a game. I sat with him a while. After some time and discussion about his game, I tried again.
“Wil, what’s the problem? You love Costco pizza. It will be a fun trip.”
He was quiet, so I waited him out. Then I asked him again. “Too long of a trip, Mom,” he replied.
I remained calm and nodded my head, but inside I was doing cartwheels. He didn’t simply respond yes or no. He told me why! He told me what he was thinking and why he didn’t want to go! All it took was giving him the time he needed.
Time is both a challenging and a simple answer to unravel what Wil is thinking inside. It is simple in the fact that when time is extended to him, the answers come. It is challenging in the fact that the time he needs is not always available. When I do have time, it can sometimes wear on my patience when time is required over and over again. But when the answers come, they are always worth the time.
The milestone of Wil expressing his “why” filled my heart to overflowing. I would wait to the ends of the earth to hear words like that. We parents who experience such milestones know the elation we feel when the milestones emerge seemingly spontaneously, while in reality, under the surface, these milestones have been worked on and waited on diligently and patiently over time. Similar to the airport incident, where many see a snapshot in time, most experiences have an underlying build-up to that moment.
“So that’s why you don’t want to go? It will take too long?” I asked.
“Yes,” he said.
“OK, how about this?” I asked. “How about we make it a short trip? Then a big slice of pizza at the end of the short trip.”
“OK.” Wil stood up and slipped his Crocs on. No fighting, no domineering. Wil’s feelings were expressed, heard and validated. Oh sweet time, how I could hug you!
I was thankful, too, that Katherine and Elizabeth were witness to the process of the Costco trip, and that they saw that the message being sent was the gift of time. I told them I wasn’t proud of the incident on the plane, that I still don’t know what the right answer was. But I do know, when we have time, Wil needs that time extended to him. To unwind, to unfold, to process. How would we feel if people were always running over us with their agenda? That’s likely how he feels all the time. It’s not about giving him what he wants all the time. It’s about giving him the time to tell us what he wants and how he feels, so he knows he’s heard.
When we arrived at Costco, Wil wouldn’t get out of the car. I reminded him that he had agreed to a short trip. Katherine and Elizabeth joked with him. Katherine and Elizabeth tickled him. Katherine and Elizabeth eventually urged him out of the car. The patience these girls have with most things we do is their norm. We rarely just get in the car and go somewhere. There is always the element of time required. I expressed to the girls that I know it can be tiring to always be extending extra time to Wil, and that they are wonderful at making that extra time fun. When we make the challenges fun, the joy on the other end is bigger. Just like the big ol’ slice of pizza at the end of the Costco trip. Wil held his up like a king.
Elizabeth has said, “There are good days, bad days and Wil days.” Her sentiment sums this up beautifully. Acceptance of the whole. Every day is new, and I learn from each one of them. When I know better, I do better. As Wil has proved, uncovering the “why” behind it all is the joy of a lifetime, no matter how much time it takes.
I’m thankful to know all of the days, and my deep breath of hope is that you are too.