Christie Taylor Uncategorized

The Bright Side

Elizabeth sent me this picture of her and her sorority sister, Isabelle. They were visiting a cider mill and enjoying the day with their sisters.

I love to see her big heart and smile, and loving life on her own. She has more than earned this time. She and her twin sister, Katherine, are great big sisters to Wil. Having a brother with a disability has impacted them. How couldn’t it?

Elizabeth is a sophomore in college studying to be a Physician’s Assistant. Since her senior year of high school, she’s worked as a Certified Nurse Assistant. She’s currently working at the local hospital as a CNA with a full rigorous academic load. As a CNA, she’s worked in many challenging situations, but no matter how challenging she treats each person with dignity. Every story she shared with me shows concern about the person underneath the challenging behavior.

Growing up with Wil, which requires patience and many times schedules built around his timing, plays a big part in this. Yes many times his needs come first. I think many believe this is a burden for siblings. But there is a flip side, there always is. And that flip side is growing a deep compassion within yourself for how others think, feel and operate. This understanding for others is grown strong by living it every day.

I love to see Lizzie in pics like this enjoying time and living life for herself. She deserves time that is all about her and all about her dreams. And with that, she also always carries with her the knowledge and compassion of what it means to care about another. There is always a flip side 😊

Christie Taylor Uncategorized

Wil Rode the School Bus Today!

Wil rode the school bus today.

In this house we take no such statements for granted.

In middle school, Wil riding the bus proved unsuccessful. He was already having a hard time transitioning to a new school with new educators and hormones were in full effect. The middle school years are challenging; then add in communication barriers and cognitive delays that a body’s progression into puberty does not wait for, and you’ve got behaviors. Every day was a new experience, and we were rewriting the plan over and again. Finally, I called “Uncle” on the bus riding as it was adding stress to Wil amongst all the other areas we were navigating at the time. It’s challenging to do that, as you never know if you are giving up at the right time, or too soon. But what I have learned is no matter what the success — or lack there of — looks like from the outside, there is groundwork being laid on the inside.

Wil is now in 11th grade. He loves being 16 years old. And he is fond of reminding me he will be 17 years old on his birthday. He wants to go to college like his sisters. We will cross that bridge — in this house we are very used to crossing bridges as they come. As he is growing into his indepedence and his maturity has blossomed, he told me he wants to ride the bus home. I joyously concurred.

Last spring, he did ride the transfer bus from his high school to the elementary school where I work. This was very successful, so I think it was the perfect nudge to riding the bus the full way home.

All was going smoothly until 2 weeks ago. Wil walked to the bus like he always did, but then just kept on a-walking. His teacher ran after him and walked him back to the bus. Wil refused to get on. So Wil and his teacher walked to the office. His teacher called me and I picked him up. This happened every day for a week.

All I could get out of Wil was that the bus was too crowded. He refused to sit up front where it was quieter. But he is in 11th grade, so why would he want to do that? I suggested his noise-cancelling headphones. Wil is very aware of his looks, and doesn’t want to look different. I want to make clear that he is in no way ashamed of his disabilty, nor should he be. And noise sensitivity is part of his disability. But Wil puts great importance on his appearance, and you know by now his deep affection for baseball hats, so noise-cancelling headphones would throw off his style; and his hat. (Wil only wears his headphones now if he is at the movies or a concert, but he’ll only go to these loud places if he really wants to be there.)

So, here we were. Wil refused to ride up front where it was quieter. He wanted to sit in the back with his friends. But it was too crowded. So it makes total sense that he would attempt to walk up to the bus, get nervous and keep going.

Just being able to make sense of things is HUGE!! When Wil was in middle school, he was not able to express to me his reasons for being nervous on the bus. His educators and I had to do our best detective work, but with so many factors at play, our best guesses were only that — guesses.

As Wil could now tell me the reason for not riding the bus, we could have a discussion about it. Now Wil had true ownership in his decision as we could have a conversation about his options as I knew what the struggle was.

Whether what we come up with works for the long-term or not is to be seen. But what is most important is that Wil has a voice in this, and that is something he’s always deserved to have, and we’ve worked hard for him to share it.

With this knowledge, Wil’s teacher created a chart to hang in the classroom. Each day Wil rides the bus he will get a sticker. Wil thrives on recognition so was immediately into this idea. Every 3 stickers, I will take Wil to the market to pick out a handmade sandwich of his choice and a drink. He also loves this type of adventure.

Today is day one of this plan. I went up to the school and parked in the lot just in case Wil refused (I parked out of Wil’s sight so he wouldn’t backtrack.)

Wil’s teacher walked with him, and he successfully made it on the bus!

In this house, we celebrate successes!

Today is one day, tomorrow will be another. And so will the next. Every day we cross a new bridge. Every day I will feel a tightening in my stomach at 2:45 with one eye on my phone. And every day it doesn’t ring I’ll release the butterflies in my stomach to fly in celebration.

In this house, every day is a new day. We never take such things for granted.

Christie Taylor Uncategorized

Special Needs Siblings

These two young women have stepped up to the plate more than most realize; and they do it with love and grace.

That said, Katherine and Elizabeth treat Wil like any little brother — loving him, being annoyed with him, and standing up for him. Their life requires an extra level that is not easy to understand, unless you also have a sibling or loved one with a disability.

If you do, you are probably nodding right now. Here’s to you, and to the path you walk, and to what you give to this world.

Christie Taylor Down Syndrome

You Go Girl!

At the airport yesterday, Wil was struggling a bit with some young children crying.

As a Starbucks was nearby, I asked Elizabeth to walk him over there while I stayed with our carry-on luggage (as Katherine was in another shop).

Wil was reluctant at Starbucks too, so Elizabeth walked him back to sit with me. She then walked back to Starbucks to get herself something to drink. A woman walked up to Elizabeth while she waited in line for her drink. The woman said she observed Elizabeth with her brother, and expressed her admiration at Elizabeth’s mature patience and how she talked to Wil. Then the woman said, God Bless, and walked away.

Elizabeth was surprised, yet pleased, by this. She was just being a sister to Wil as she always is (and Katherine has this same mature patience with Wil, as well), and didn’t see her actions as anything different than normal behavior.

In Elizabeth’s everyday life, she lifted the spirits of another, and she was uplifted in return.

I’m proud of Elizabeth (always), and also proud of the woman who had the courage to step up and acknowledge Elizabeth.

Katherine, Elizabeth, Wil

Christie Taylor Down Syndrome

Girl Time

Wil sat down on the bench. I sat next to him and watched a droplet of sweat slip down the side of his forehead. It was 88 degrees and he’d already been walking for 90 minutes. Katherine was to our left crouched in front of a hyena. She snapped a few close-up photos. The hyena was belly up, legs splayed, mouth open in what I swear was a smile, pink tongue hanging to the side, with the cool earth on his back and the hint of a breeze ruffling his coat; just like our pet Labrador on a hot summer day. Elizabeth and my dad were to our right watching an anteater splash himself in a pond. 

I knew there would be a point when Wil abruptly declared himself done with the zoo. I was impressed, though, that he’d made it this far. Earlier that morning, Wil jumped out of bed, stripped off his pajamas, took his still damp swimsuit off the dry rack, and pulled it on as fast as you can pull on a damp swimsuit. He jumped in my parent’s pool and played for 2 hours forgetting all about breakfast, until I reminded him it was time to eat and head to the zoo.

Wil and I sat together on the bench talking; I knew the only place he’d go from there was the exit door. After about 10 minutes, Katherine, Elizabeth and my dad joined us at the bench. Katherine and Elizabeth wanted to stay for the safari show which was in 2 hours. We came up with a plan: my dad would take Wil out to eat while Katherine, Elizabeth and I completed a tour of the zoo and watched the safari show. After that, we’d meet my dad and Wil in the parking lot and head back to my parent’s condo.

It’s a balance raising typically-developing children and a child with Down syndrome, but not an equal one. If my dad wasn’t at the zoo that day, then Katherine, Elizabeth and I would have left after we coaxed Wil up from the bench. Or, I would have sat with Wil while Katherine and Elizabeth continued the zoo tour on their own, because when Wil is ready to go, there is little chance of convincing him otherwise. Katherine and Elizabeth are deeply patient, compassionate and understanding individuals for that fact. They haven’t been outwardly taught to be that way; it’s part of their daily lives and ingrained in who they are. 

After my dad and Wil headed off to the car, Katherine, Elizabeth and I visited more animals, took pictures, browsed the gift shop, and watched the safari show — all on our own time, at our own pace, in our own way, just us girls. As we sat at a picnic table and sipped $4.00 lemonade under the shade of the Naples Zoo banyan tree, I took notice of the way the roots, stump and branches articulately wove together over time to create this magnificent tree. 

I sent a silent nod of reverence to the banyan tree, as we share the knowledge that balance is not always created in symmetry; that intertwining segments woven together over time form a foundation well-grounded. I looked my girls, and thought of sharing this, but they are teenagers and would have rolled their eyes. Instead I told them how proud I was of them, how thankful I was for this time together, and that one day they would also know their deep magnificence. 

Christie Taylor Uncategorized

A Darn Straight Day

“Mom, I worked hard today!” Wil shouted as he threw the car door open and took a seat right behind me. The school day had just ended. Elizabeth slid into the passenger seat and Katherine jumped in next to Wil.

“No way, Wil, not three days in a row.” I said.

“Yes!”

“Nope, not possible.”

“Yes!”

“Put it here, buddy. I’m proud of you.” I raised my hand over the front seat and Wil met it with a strong high-five. “Katherine, did you work hard today?”

“Hmm, sort of.” She gave Wil a sideways smile.

“What!” I rolled my eyes in mock disdain.

“Giiirl,” Wil pointed to her, “you work hard!”

“Elizabeth, did you work hard today?” I asked.

“I did, but I could have worked harder.”

“Darn straight!” Wil yelled out.

“Wil learned that from Ms. Kastel in a game they were playing.” Elizabeth said. “I think she changed one of the words.” We shared a smile.

Ms. Kastel was Wil’s 7th and now 8th grade social studies teacher. 7th grade was a particularly trying time for Wil, with a change in schools and an uptick in puberty. Ms. Kastel was cognizant of this and continually worked to find ways to connect with Wil. When she discovered Wil’s love for country music, she introduced him to one of her favorites, Johnny Cash. She bought the two matching t-shirts which Wil wears proudly. Wil also loves Pringles, so he and Ms. Kastel share a Pringles cheer for a job well done in class. Not surprisingly, social studies is now one of his favorite subjects.

On our drive home, Elizabeth filled me in on her day. Katherine added commentary on their shared classes. Wil listened to both of his sisters, then hollered out, “Mac ‘n’ cheese, Mom!”

“Mac ‘n’ cheese? You had it for lunch?”

“No, made mac ‘n’ cheese.” Wil mimicked stirring a pot. “With Victoria and Anna. My Connect friends.” (Connect friends are typically-developing juniors and seniors who are paired with students who have special needs.)

Oftentimes, Wil doesn’t offer much after school. He’s generally open at bedtime, when the house is quiet and there is time and space to share his thoughts. It can be challenging to create space between his sisters’ words on the drive home. We will often ask Wil questions to create the space for him. Though we typically get a “hmph” and shrug of the shoulders in reply.

When Wil stepped into the car that day, he threw the door wide open to his school experiences. I never know when or how a breakthrough in communication will arrive, but I know it when I hear it. On this day what busted down the gates was a build-up of three straight days of working hard, making mac ‘n’ cheese with Connect friends, a darn straight awesome social studies teacher, and hard-working (even if they tease they don’t), loving sisters who naturally show Wil how to create his own space. And that’s exactly what he did.

Christie Taylor Down Syndrome, Uncategorized

We All Have Hard Stuff

Yesterday, I just didn’t have it in me. Yesterday, I did not have the patience that on somedays I find miles of.

Some days I wish Wil would just get up and get in the car when I ask him to. Some days I wish I could say, “We are leaving in 20 minutes,” and he’d go get his hat and shoes, and then we’d be on our way. But it doesn’t work like that.

Every time we need to go somewhere it’s a process. I start 30 minutes ahead of time with Wil. I ask him to get his shoes and pick out the hat he wants. Then I check in 10 minutes later. He may have moved closer to his destination, or he may not have. There is more coaxing. And then, eventually, he is ready to go. Or not. This is not once in awhile. This is all the time.

Yesterday Katherine and Elizabeth had driver’s education at 6pm, and that means we needed to leave at 5:30pm. I was making dinner and realized it was already getting past 5pm. It was time to let Wil know it was time to get ready to go.

I walked downstairs and told Wil it was time to go. “Ok, Mom. Hugs.” This is all normal. He’s big on hugs. I’m big on his hugs. That’s the beauty of not being in a hurry with Wil. You never forget to give and receive hugs.

After our hugs, I asked Wil to get his Crocs and pick out the hat he wanted to wear. He said ok and I went back upstairs to continue with dinner. Ten minutes later I didn’t hear any noises from him getting ready to go. I went back downstairs and he was sitting on the floor. He had been good-natured so I wasn’t sure what this resistance was about. With more hugs and coaxing, I told him it was time to go. He refused to budge. As I didn’t understand the reasons behind this particular refusal, I wasn’t sure how to talk him through it. It may have been a simple case of being a teenager and exerting his independence.

At times, Katherine or Elizabeth are able to get him moving. Katherine came downstairs. “Wil, can you get up and hold my hand? I really need a hug.” Wil looked at her and considered this, then ducked his head down. Not a good sign.

At this point, we were running out of time. “Wil, we need to go,” I said. “This is not fair to your sisters. You had plenty of time to get ready, and it’s time to get up.” He looked at me and looked back down. “Come on, one last hug. Can you get up and give me one last hug?” I hugged and tried to lift him up, which sometimes works. He resisted strongly. At this point, we were on the verge of being late. I asked Katherine for help. She asked Wil for another hug, but he sunk down deeper.

Elizabeth came downstairs to see what was happening because it was time to go. We literally had minutes left. I don’t like lifting Wil against his will, but I also don’t like sending him a message that this behavior is ok. We all need to work together – and that’s what we did, well at least three of us. Sometimes you have to do things you don’t want to do. After all of our coaxing and hugging, Katherine, Elizabeth and I lifted him up.

Wil is over 100 pounds, has low muscle tone so can wiggle out of your grip like a noodle, and he was unwilling. We made it up half of the steps to the landing and set him down. I again asked Wil to get up on his own.

“Don’t carry me. I’m not a baby.” Wil said.

“You are right Wil. You are not a baby. You are 13 years old. You are very big. So let’s stand up on your own and walk to the car like a big, grown up 13 year old does.”

No response. We picked him up again and made it to the door. Again, he refused to walk on his own. So we picked him up and made it to the car. Again, he refused to get in on his own. We picked him up again and got him in the car.

This whole process was physically and mentally exhausting for all of us. Wil was withdrawing in the backseat of the car, and I was doing all I could not to break down in a full out ugly sob. I hesitate to use the word traumatic, as that is quite extreme, but in that moment that is the best word I had to describe what I felt. It was a very heavy feeling. I just hated lifting him up like that and making him do something so against his will. But he also needs boundaries and to understand that we need to go and do things when he doesn’t feel like it; that’s just part of life. How to do that, how to balance that, I don’t know. I’ve learned a lot raising Wil, but I have a lot more to learn. And gosh does it hurt sometimes.

He was upset for some time in the car, understandably so. Katherine and Elizabeth seemed like they were fine, and we talked it out. I don’t like that they have to go through this either. This is part of their everyday life too. We never just get in the car and go. For them, everything is a process, and much of it revolves around Wil. Surely it has created great compassion and strength in them that many will never understand fully. I just don’t want this to cause resentment toward their brother. At this point, I’ve certainly seen loss of patience, which all siblings have, but thankfully no signs of resentment, and I’d like to keep it that way.

On the drive home, while Katherine and Elizabeth were at driver’s training, I asked, “Wil, do you know why we lifted you up in the car?”

“Hmph.”

“Wil, your refusing to leave was being very inconsiderate of your sisters. They cannot be late to this class and your refusing to leave almost made them late. When you have somewhere to go your sisters are very considerate of you. I’m asking you to be considerate of them, too.”

“Mom, I’m not listening to you.”

I stifled a laugh – this was so pure, typical teenager. I’m balancing Down syndrome and typical teenager with Wil. On one hand, this comment is a milestone for him; using his words in this way to express his emotions. On the other hand, the mother of a teenager in me was thinking, “Oh yes you will be listening to me.”

After I had picked up Katherine and Elizabeth from driver’s training and we had made it back home, Wil had recovered and was bouncing around in his happy state. Me, not so much. I still felt the deep turmoil in the pit of my stomach. Do you ever have this deep sob within you and it just needs to come out? That’s what I had and I was trying to hold it down in my stomach and process through it piece by piece to make sense of it. Sometimes I can do that. As I process each emotion and what it means, it eases the pain, bit by bit, until the sob has dissipated. This time though, the turmoil remained jumbled up in my stomach and I just couldn’t find the state of mind to unravel it.

Later that evening, we were all sitting on the couch and Matt asked Elizabeth how driver’s training was.

“Well, we were almost late thanks to Wil. But we made good time.” Elizabeth responded.

“What happened with Wil?” Matt asked.

Elizabeth told Matt what happened. I confirmed and filled in a few details.

“It looks like he’s fine now.” Matt said.

“He was upset for some time,” I said. “I hope the message sunk in. It was so hard. I know he’s bouncing around now, but he was really mad at me for a while.”

“Mad at you?” Elizabeth said and looked at me. How did that girl get so smart? She has amazing perspective for her age. Looking at her, and feeling how grateful I am for how both Elizabeth and Katherine roll with those tough times, and take it in stride, the sobs came up to the surface before I could even process what was happening. There was no stopping them then. I didn’t want the girls to see me like that so I went to my bedroom and I let it all out.

Matt came in and hugged me. I was so thankful to have him to hold on to. I sobbed my heavy sobs and held on to him around his waist.

We talked a little bit. I told him how I feel lost with Wil sometimes. That I don’t know the right thing to do when he’s like that. I don’t know if the message was received by him. I don’t like to force him, but reasoning with him is not always an option. And we talked some more. We are also raising two fifteen year old girls and that has its own challenges. There are days I feel like I’m failing, and this was one of them. Then Matt stood up and picked up this little note I keep Elizabeth made years ago that said, “Best mom ever.” He handed it to me. I loved him so much at that moment. More tears.

He said to me, “Everyone has their stuff, Christie. It might look different, and they might not always talk about it, but everyone has hard stuff they have to deal with. This is some of our hard stuff.”

And that’s why I’m writing this now. What compels me the most is for you to see the big picture on raising a child with Down syndrome. Some see our kids as happy all the time. They are not. Some see raising a child with Down syndrome as an always challenging journey. It is not. It’s a mix of everything, just like everyone else’s life. We all have hard stuff, even if it looks different and we don’t always talk about it.

This morning on the way to Wil’s swim lesson, he was jamming to his favorite Luke Bryan songs. The sun was shining and his high spirit was contagious. I couldn’t help but sing with him, as we ventured forward into a fresh, new day.
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Christie Taylor Down Syndrome, Uncategorized

In Sync

As Wil has gotten older, it’s clear he needs closer friends with Down syndrome. He has wonderful friends at school that love and support him fully. As the gap in abilities with his typical peers grows and social lives expand, Wil also needs to cultivate friendships with those whose abilities match his.

Manny’s family lives in the neighboring town, so his mother, Laura, reached out to get our boys together. Manny will be entering 9th grade, and Wil 8th.

When Manny arrived at our house, it was our second get-together. We had met at Portage Lake the previous week and a friendship was formed. Though both Manny and Wil had talked of this second get-together for days, when Manny entered our house he went to the couch and Wil retreated to his bedroom. They were overwhelmed.

I took a big sigh of relief. Why? Because this was normal behavior not for just one of them, but for both of them.

I coaxed Wil out of his room, and Laura coaxed Manny to show Wil the toys he brought. Manny won Wil’s heart by bringing him a can of Sprite to drink with lunch.

The two laughed and were silly with lunch, and that broke the ice. But after lunch, they separated again. Even this separation was refreshing to me as it’s usually Wil I’m coaxing while others wait. This day, we were all gloriously on the same page, even if Manny and Wil were apart. Manny’s older sister, Grace, was there, and she kept the conversation going engaging both Wil and Manny. Like Katherine and Elizabeth (who were at a birthday party), this is Grace’s normal, and she handles it, well, with grace.

Laura suggested a movie to start the ball rolling again. And roll the ball we did — Manny chose Hotel Transylvania 3 and we played a game where we sat on the floor and rolled the ball to each other. When the music in the movie played, that was the kryptonite to whatever was holding them back. Manny and Wil broke out their dance moves. Then Wil broke out his karaoke player and jammed to Luke Bryan while Manny jammed on his Bluetooth mic he brought from home.

After the jam session, we headed outside to the driveway to ride bikes. Manny tried Wil’s recumbent bike while Wil rode his bike with training wheels. The handles on the recumbent bike are what steer it. Manny is used to using an elliptical machine, so he was pumping the handles back and forth zig zagging around. I thought that was a smart technique. With a few more tries, he figured it out and was zooming around, even on the grass!

Then I took Manny on the 4-wheeler. He “woohoo’d” the entire time. The guy has a need for speed!

Soon it was time for them to go, and we said our goodbyes until next time. I talked to my sister that evening, and told her how great it is to have a get-together where the kids are on the same level. It’s something you just don’t take for granted.

A day full of stops, starts, zig-zags, and full speeds ahead — all the while, remaining gloriously in sync.

(Photo: Potato chip lips)

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Christie Taylor Down Syndrome, Uncategorized

Chicken Tender Caper

Last night I made “healthy” chicken tenders (soaked in almond milk, whole wheat bread crumbs, etc). I took the tenders out of the oven, hollered to Matt, Elizabeth and Wil, who were outside, dinner was ready then took Katherine to Crossfit. I returned to Elizabeth telling me Wil ate almost 2 pounds of the tenders, as when she and Matt came inside, only 2 tenders were left.

Late this afternoon, when I returned home from work training, Elizabeth told me she caught Wil in the basement eating chicken tenders! Apparently last night, after eating a few tenders, he put all but 2 tenders (kindly leaving one each for Matt and Elizabeth) in Tupperware. He hid the Tupperware full of tenders in the basement fridge so he could have them for lunch today.
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Christie Taylor Down Syndrome

Navigating Methods of Plane Sailing

“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 just can’t get him up. I’m trying.”

Katherine was standing by our bags and Elizabeth and I tried to lift Wil up into a wheelchair to roll him onto the flight. When an 110 pound boy with low muscle tone doesn’t want to move, its like lifting an extremely heavy noodle. Once you do get him up, he seems to fold within your hands and slip out.

I saw him falling apart about thirty minutes ago. When it started in his mind I can’t tell you. I saw his shoulders start to slump, then he muttered to himself. That was not a good sign. When Wil gets like this he needs time to unwind. My guess was he was becoming overwhelmed by the prospect of going to Florida. It’s not that he didn’t want to go, it was the opposite. The anticipation of it all was overwhelming him. 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 a dream. Especially after being homebound for so long with the pandemic. But all of that anticipation was building to 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 Elizabeth’s help, as she jokes around with him a lot and can typically turn his mood around. She already saw what I did. She knew something was happening with Wil and knew it wasn’t a good sign. Katherine was reading a book, and I explained what I saw happening. I asked if she wouldn’t mind standing by the bags if things didn’t go well. She agreed.

Elizabeth and I had tried to perk Wil up with jokes and talking about seeing Grandma Leigh and Grandpa. Through all this, the line of people getting on the plane shortened. I knew our time was running out. And with Wil, time is what we always need. He slumped down further. I knew if he sat on the ground we’d likely not get him up. I scanned the room and saw an empty wheelchair owned by the airline. Likely someone had used it to board first class and now no longer needed it. I quickly ran over to grab it and wheeled it next to Wil.

“Look Wil! Do you want to go for a ride?” He looked up then looked down again. Nothing I had in my arsenal was working. We’ve been down similar roads before. Again, time is what we needed and it was quickly running out. And then, he sat on the floor. I didn’t want to do this, but I could think of no other options.

“Elizabeth, we have to lift him up. Can you help me?” And so, the two of us lifted him and he adamantly refused. The passengers that were still in line began to stare. They knew nothing of the build up of this moment. All they saw was the force being used. I felt sad. I felt anger. Not at them, not at Wil, but at myself. How could I, the mother, be forcing my son against his will. What message am I sending to Wil? What message am I sending to his sisters? What message am I sending to the outside world? That force is the answer? But that was the problem, I didn’t know the answer. I simply didn’t know what to do at that point to get Wil on the plane. I knew he needed time to process. I knew he needed time to tell me what was upsetting him. I knew, with time, he would willingly stand up on his own and board the plane. The problem was that the plane would be long gone with the time he needed. And so, I resorted to lifting him into the wheelchair, which he would then slide out of back onto the ground.

At this point I was sweating. I was frustrated. I was on the verge of tears. I racked my brain for options. I thought of sending Elizabeth and Katherine on the flight without myself or Wil. They were almost 15 years old and they’d been on this flight many times. I’d find another flight for Wil and I to Florida. But when would that be? I also knew how incredibly upset Wil would be when the plane left without us. But I certainly was not going to penalize Katherine and Elizabeth by making them stay back, too.

As these thoughts swirled and Elizabeth and I continued our attempts to get Wil in the wheelchair, one of the women from the airlines 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 her. She was a break in his pattern. He wasn’t fighting me and he wasn’t fighting his sister. This 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? And see your grandparents? Let’s get you in the chair so you can do that.”

When Wil stood, I felt as if 100 pounds was lifted off my shoulders. And in a way, it was. Wil 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. I have no control over her thoughts but I do have control over mine, and I was thankful beyond measure that Katherine, Elizabeth, Wil and myself were boarding that plane together.

That is one of the challenges of awareness. It’s rarely the act of what is seen that’s the full picture. When I saw what was happening with Wil it was thirty minutes prior, and likely whatever was happening in his mind started earlier than that. But what everyone saw was the five minute breakdown. What message was received in that time to contribute or take away from Down syndrome awareness? It’s rarely black and white. It’s this process that happens over time, and though I’ve been raising Wil for 13 years, every day I’m figuring out the grey areas.
Once on the plane, Wil was back to his silly, fun-loving self. We had crossed whatever barrier was in his mind. On that flight, I was already mentally preparing for the flight home. Going back over the signs of Wil breaking down. What I could do to prevent them. For the flight back home, my mom packed his favorite snacks. I downloaded favorite movies. And I didn’t need a single one, Wil breezed through security and onto the plane without a single halt. It was all gloriously uneventful.

But that flight on the way to Florida stays with me. It’s a puzzle to unfold. And I do know it needs to be unfolded with extra time. I’m better at reading Wil’s cues, but I need to find them earlier and earlier when I know time is not on our side. Even so, there will always be those times when he shuts down and I don’t have time. What to do then, I still need to figure out. Force is not the answer. Domineering someone is not the answer. Time is the answer. Anticipation is the answer. But what if you don’t have those things? What then? I don’t know yet, but after that flight, when I do have time, that experience reinforced that I need to take it.

The day after we arrived back home, I needed to make a Costco trip as our cupboards were bare. Katherine and Elizabeth love going to Costco. We had not been there since the pandemic, so the girls were extra excited with the prospect. Wil, not so much. Earlier that morning, Wil had gone with me to the school to return his sister’s 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 all of his teachers in person with the pandemic, so this was a real treat. He was in great spirits so I was surprised that 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.

When we returned home from the school, he went directly to his room. As both Katherine and Elizabeth were looking forward to the Costco trip, I wasn’t about to ask one of them to stay back with Wil. So, how to convince Wil to go? I knew, in time, I could figure out what the roadblock was. And unlike the plane incident, 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 awhile 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. I’m going to take a nap.” She 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 to her bed.

“Hey, not my bed,” Elizabeth jumped up and chased him.

“Yes, your bed,” Wil said laughing and running to Elizabeth’s room. Elizabeth bear hugged him before he reached her room and turned him around. They both fell down laughing on the ground.

“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 awhile. After some time and discussion over his game, I tried again.

“Wil, what’s the problem? You love Costco pizza. And 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! And all it took was giving him the time he needed. Time is both a challenging and simple answer to unravel all that holds Wil back.

Simple: give Wil time and the answers come. Challenge: I don’t always have the time he needs. And, it takes a lot of patience. Time and time again. But when the answers come, they are always worth the time. The milestone of Wil telling me why filled my heart to overflowing. I would wait to the ends of the earth to hear words like that. Every parent out there who waits for milestones to happen, never knowing when or how, and then when the milestone emerges, unplanned, unscheduled, of our child’s own will, knows this feeling of joy I speak of.

“So that’s why you don’t want to go? It will take too long?”

“Yes,” he said. And just like on the plane, where many see the one snapshot in time, and not the build-up, so was this conversation. So simple on the surface, and yet, for me to have this conversation over his “why” was a build-up in time. It was a beautiful moment. A breakthrough. An answer I had coveted and now could enjoy sharing with my son.

“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,” he said and stood up and slipped his Crocs on. No fight, no domineering. His 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. 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 not about giving him what he wants all the time. It’s about giving him the time to tell us what we wants and how he feels so we can work with that.

When we arrived at Costco, Wil wouldn’t get out of the car. I reminded him that he agreed to a short trip. Katherine and Elizabeth joked with him. Katherine and Elizabeth tickled him. Katherine and Elizabeth eventually got 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. But 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. And as Wil 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, you are too.

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