You will meet educators that care so big, their heart is visible from the inside out. ~Down Syndrome Awareness Month Day 3
Down Syndrome Awareness Month – Day 3
joy
Our Own Little Buddy Walk
The DSST Buddy Walk was virtual this year, but thanks to Wil’s amazing friends and this caring community, we had our own fun walk of about 30 people (and dogs!) in Manchester. Our local Steelegrafix LLC made our shirts this year and not only donated a portion of the proceeds to DSST, but also matched that amount! Manchester Mirror wrote an article about the event: http://themanchestermirror.com/2020/09/28/annual-buddy-walk-goes-virtual-for-2020/?fbclid=IwAR0_R7peFOfYsXal3REQWOTEXy-oZogfEFm6ps0SZ3y43ET1ofljqRZO11Q
Thanks to all who supported and/or walked!! If you’d still like to donate, Wils link is:
https://secure.frontstream.com/buddywalk2020/team/924124
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Turn it Up, Down
Wil and I left the store and walked through the parking lot to our car. Wil stopped just short of our car, and kicked his legs out in front of him in quick succession. He began humming a tune, then planted his legs and wiggled his hips. His hum broke way to song and he pumped his arms in the air.
“Mom, dance with me!” He yelled.
“How could I not?” I replied and jumped in with him.
Wil is rarely without a song. If you utter a word, he’s got a song for it. If I say, “I think it’s going to rain,” he’ll reply with, “Rain is a good thang!” (A Luke Bryan favorite.)
Wil walks around our house singing songs. It’s not uncommon for Wil to break out in song at the dinner table. He may have halts in his speech, but his singing words flow. Wil plays and lives by the beat of his own music every day. You don’t have to know music to know Wil –he brings you along for the ride.
One day while walking the aisles at Target, Wil spied sample headphones sitting on a counter. He put them on and started jumping, twisting and waving his arms. The wire cord attaching the headphones to the counter were his only hinderance. He danced to a beat streamed into the headphones only he could hear, and yet it was quite amazing to watch the effect of his song reach every person passing by. There was not a person who didn’t visibly relax their shoulders, smile and walk taller after passing Wil’s space. You don’t have to hear his music to feel the beat.
Ironically, when I think back to the day I received Wil’s diagnosis, my memoires are devoid of song. There was no dancing, not even to a silent beat. Even Wil barely let out a whimper.
I learned lots of words and terms in those early days, but none had a note of song. In fact, Wil’s diagnosis had a name that was quite melancholy. The name “Down” was attached to Wil’s syndrome, after Dr. Langdon Down. Though Dr. Langdon Down seemed to be a good man, whose intentions were to make a better life for people with Down syndrome, a name like “Down” is hardly joy invoking. But leave it to Wil to change that.
Wil may have been a quiet baby, but he could soon sing “You Are My Sunshine,” word-for-word (a song my dad always sang to him) before he was able to speak. He rocked to the beat months before he could walk.
As Wil “gets down” to his music every day, I looked up that very term in the dictionary: “to enjoy oneself by being uninhibited, especially with friends in a social setting.”
I’d say that’s a down-right accurate description.
To which Wil would likely sing in reply: “I turn it up, down, up, down, up, down…”
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Stepping Into the Real Story
There is a book called “Count Us In” that is written by two young men with Down syndrome (and as the book’s description adds: with some word processing help from their mothers). This book was a symbolic “coming of age” for me.I started out reading beautiful books such as “Gifts 1: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives” and “Gifts 2: How People With Down Syndrome Enrich the World.” I highly recommend these two books over and again. They were immensely helpful to me (I foolishly brought Gifts 2 on a plane ride and found myself in happy tears instantly.)
Oftentimes, the hopes and dreams we had for our child are immediately transformed to enormous question marks when we receive the initial diagnosis. This leaves an enormous void. What do we fill that void with? What new hopes and dreams can we dream? That is where real stories from real people come in. They help answer these questions and create new hopes and dreams. The void begins to fill. But there are still so many question marks. Gifts 1 & 2 filled so much of the void I was feeling. I began to dream new dreams and hope new hopes. I was so emboldened that I moved on to the book, “Count Us In.” What could be more inspiring than a book written by two young adult men with Down syndrome?
I don’t remember how far I made it through this book, but I had to put it down. I cried again, but this time big, sad tears. I wasn’t ready for this book. What specifically go to me was this: the young men’s speech delays were clearly evident in their writing. I wasn’t ready for that level of reality. The void I felt was still too raw, too fresh. I thought I had filled it, but after getting into “Count Us In” I knew I had more accepting to do. Or maybe more accurately speaking, more “knowing and experiencing” to do. In those early days what I needed was hope and faith in a very broad sense. I needed to read real stories from real people showing me that my son had a beautiful life ahead of him. They showed me to way to dream new hopes and new dreams. I wasn’t ready, though, to understand the intricate realities of the daily walk into those new hopes and dreams.
I returned “Count Us In” to the library and picked up those “Gifts” books over and again. As each book has a series of individual stories, as a busy mom, I reveled in the fact that I could open the book to any page and read as briefly or as languishly as I chose. Now, 13 years later, I am as inspired as I once hoped to be with “Count Us In.” (And I continue to absorb and read the stories of Gifts 1 & 2) So what has changed? I have now had the benefit of walking into those new hopes and dreams. This life is up close and personal instead of new territory to navigate.
When I watch Wil read 2nd grade level book, I know every single step it took to get to this place. I’m so proud of him, proud of his teachers and proud of our family. We have all seen every single step of his progress, and it’s an absolute joy to realize every triumph. Nothing is overlooked or taken for granted, and when you live that way, life is a good place to be.My twin girls are starting to drive. Wil sits in the back seat and teases them and they tease back. We have worked so hard on back and forth communication with Wil, and this is how it’s starting to emerge. I sit in the passenger seat listening and loving what is happening. My girls are driving and my son is teasing them. So darn typical! And still, within that typicalness, I could jump through the roof with my gratitude for it all.
Now when I read “Count Us In” I’m so proud of these young men, and I’m proud of their word processing mothers. I’m also thankful they took the time to share their lives with us. I’m also thankful that I’ve walking into a place where I can rejoice with every word they have written, in full and very real detail. Where at once I felt disconnected, I now feel more connected than ever.
We all have our own timeline for getting to where we want to go. And sometimes, it just takes some extra steps to get there. When we do arrive, we know, because we are the ones who have taken those steps. Even better, there are always new hopes and dreams to step(or crawl) into.
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Opening the View
I’m embarrassed of things I said before Wil was born. I was ignorant. I just didn’t know. Now, when I hear or read certain words, I cringe immediately. My kids cringe immediately. We know better, thank God.
When words hurt, our primitive drive is to react with a fight. Eliminate that word! It is evil. Words are easy targets. They are tangible. Something to go to war on. But is it the word? Or the feeling behind the word? The feeling is in the soul of the word. Once the word is killed, the soul will live on. Like a disease, if the spirit of the feeling goes untreated, it will come back in a different form.
So how do we fight a feeling? How do you fight the spirit of something? Or is even putting up a fight the right thing?
Nobody had to fight me to change my mind. I was instantaneously in a place where I needed to listen. I needed to learn. All that I thought I knew, or better yet, what I thought I didn’t want to know about, was staring me right in the face.
I may have opened my mind over the years with life experiences without having a child with special needs. I already was a fairly open-minded person, but I still closed my mind to things I didn’t want to know about. But now, oh how I want you to see this place. I want so badly for you to understand what I once didn’t. I want you to see how incredibly amazing this place is. How full, vibrant and enriching it is. How you would never, ever think think to throw stones in our direction if you only knew.
I don’t want to fight ignorant feelings. I don’t want to throw the stones thrown at us right back at the thrower. I want to open eyes. I want to open ears. I want to open all senses to the beauty that is right here in plain view.
You can’t eliminate a feeling with a fight. But you can transform a feeling by opening the view to meet all of the senses.
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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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No Words to Describe the Words that Do
Wil was busy packing his backpack. Then he walked up to me and told me what he was doing and walked out the door. I didn’t understand fully what he said. So I watched him walk down the lane of our back field. If he turns right, that means he’s going to the river. If he turns left, he’s collecting sticks. He turned right.
I threw on a coat and gloves, hopped on the 4-wheeler, and sped down the lane. I hopped off and started making my way from our property to the woods.
But, before I reached the woods, there sat Wil – cross legged in the grass. His backpack was open, the soccer ball he packed had rolled out. In front of him was a spiral notebook. He held a pen in his hand and had written one word: Ashley.
“Hi Wil.”
“Hi Mom.”
“Whatcha doing?”
“Mom, look.” He started writing.
“Ashley summer? Yes, we’ll see Ashley in the summer.” He nodded and continued writing.
“Swimming with Lila? Yes, you’ll have fun swimming with Lila.” He nodded then wrote again.
“Eating? I know you love to eat!” He laughed and wrote again.
“With Mom and Dad. Yes, Wil, that’s right.”
“Mom, look.” And he wrote “I love you.”
“I love you, too, Wil. Very much. I’m also very proud of you.”
He smiled at me, and signed his name.
“I’m cold, Mom.”
“I bet. I’ll give you a ride home.”
Words can’t describe. ❤️
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This Is How We Do
This morning I said to Wil, “You have school today.”
Wil was sitting criss-cross applesauce on the couch. He had his lap desk balanced on his legs, upon which was a plate and his breakfast sandwich. Mickey Mouse Roadster Racers played on the TV. Wil turned his head to look at me, careful to keep the lap desk perfectly balanced. With his mouth full of breakfast sandwich he yelled out, “Noooooo!”
“Oh, wait, wait, sorry, I didn’t mean you are going back into the school today. I meant you have your Google Classroom call today. It’s Monday. I thought you may have forgotten since we haven’t had a call since Thursday.”
“Oh, ok.” And he resumed chewing and turned his attention back to Mickey Mouse Roadster Racers.
In a way, I was relieved by his immediate refusal to go to school. In the beginning of this pandemic situation, Wil was very upset he wasn’t going back to school. He wanted to see his friends. It was also very close to Spring Break. He then thought it was Spring Break, but the problem with that is we were going to Florida for Spring Break. We cancelled our flight due to the pandemic. As with any change in schedule for Wil, we really talk it up so he’s prepared. We had been talking about the Florida trip to see Grandma Leigh and Grandpa for quite awhile. How he would swim every day with Grandpa. How he’d go for walks with Grandma Leigh. Everything we had talked up over time, we now had to repeatedly break down in explanation.
Wil misses his friends a lot. Zoom calls are both helpful and hurtful. He loves seeing his friends, but then he misses them more when the calls are over. So we decided we’d make a plan. A plan to see his friends in the summer. That way he had something to look forward to. Now, if it’s a warm day, he asks me if it’s summer. We look at the calendar and take note that it’s not summer yet, but every day we are getting closer.
I’ve been lax with Wil on schoolwork during this time. We have been very active outdoors. In many ways, Wil is an old-fashioned kid. He enjoys and learns most from functional movement. He’s very observant of what is around him. I’m always learning when I take walks with Wil. He doesn’t miss anything. He loves collecting sticks so he takes note of different types of bark, how two sticks sound hit together (one more hollow than the other), how certain sticks break and others are strong. He truly does take time to smell the flowers and take in what is around him. If there is a sign to read while outdoors, he reads it aloud to me. We were watching the movie, “Onward” last night, and there were a written signs and notes. He read all of them. We’ve had a natural learning environment, of sorts.
I’ve made him aware school work is to be done, but I haven’t forced it or created a strict schedule. As the beginning of this situation was so confusing to him, getting Wil to sit down to homework was a long stand-off. I weighed the checks and balances and decided at that time, it just wan’t necessary to have a stand-off at that time. We would take our time and find our way through this. I let him know what school work was available to do, and then he chose which options. In fact, one night at 8pm, he looked at me and said he wanted to do school work. It’s not exactly what I wanted to do then, but I wasn’t about to turn him down. So he did about 30 minutes of school work and then he went to bed. For some kids, a strict schedule brings security. For some kids, if you get off a schedule you’ll have a near impossible time getting them back on. It’s a very individual process. I decided we’d do our natural learning and then the time would reveal itself when more of a regular schedule was needed.
There are memes swirling around on social media from Phd’s in psychology about it being ok to be lax with school work right now. That it’s good for your mental health. That we as parents have a lot going on and we are not teachers. And conversely, there are memes swirling around from other Phd’s stating statistics on the learning our children will lose if we don’t stay on a schedule at home. They are likely both right. But here’s one thing I’ve learned from raising a child with special needs. There is no “how-to.” It’s, “this is how we do and maybe it will work for you too.” I’ve found taking a deep breath, stay focused on the goal, and rolling forward in our own timing is what works best for us. Suggestions are great. But be careful with assumptions that are made with those suggestions.
I’ve seen it said that this situation is the same for our kids with special needs, that we are all confused. I’d agree we are all confused, but I don’t agree it’s the same. I believe that by saying it’s not the same, that’s interpreted as a bad thing. But it’s not a bad thing. It’s just different. I’ll never forget when I met a school psychologist and he said, “When I was in school for this job, I heard people with Down syndrome were stubborn. And I thought, well, so what? Lots of people are stubborn. Then I started working with people with Down syndrome. And I realized there is a whole different level of stubborn.” We both laughed at that. Because it’s true. It’s not bad, it’s just a different. And those differences don’t have manuals. Ask any special education teacher or parent. There is no true “how-to.” There is “this is how we do and maybe it will work for you.”
So this is how we do–Step 1: A loose structure of time outdoors mixed in with chores, some reading or online work, have been effective. This has kept the momentum rolling forward. However, with Wil’s reaction to going to school this morning, and with our day to day life, I’m now seeing that Wil has begun acting less confused and disappointed about all of the changes in his life. He’s begun to settle into a new normal. Though Wil still wants to see his friends, in person, and he still wants to go to Florida, he’s come to terms with our current situation. It’s now time to schedule blocks of specified school work. So this is how we will do–on to Step 2.
When Wil finished his breakfast, he set his lap tray aside and walked behind the chair I was sitting in reading. He leaned his chin on my head, and wrapped his arms around me. He took a deep breath in and said, “Ahhhhh, what a beautiful day.”
Let’s all take a collective deep breath with him, and go on with our day, rolling our own way. This is how we do.
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Play, Pray and Don’t Say Beer at School
I ran into Wil’s room and started cheering, “It’s Friday, it’s Friday, it’s Friday!”
He rolled over, giggled, and pulled the covers over his head. I put my hands on his back, and pushed down, then released, pushed down, released, over and again, bouncing him on his bed, singing, “It’s Friday, it’s Friday, it’s Friday!”
He laughed, craned his head up to look at me and said, “Ok, ok, ok, Mom, just calm down.”
“I will if you get out of bed.”
Still laying on his stomach, he scrunched his body up, his tushy sticking up in the air. I gave it a swat and said, “Get your little booty out of bed.”
“Look Mom, I’m an inch worm” and he wiggled on the bed.
“You are a very cute inch worm. And you are going to be a late inch worm if you don’t get dressed soon.”
“Ok, Mom, hugs.” He sat up and reached out for a hug. As I leaned in to give him a hug, he bear hugged me. I lifted him up and out of bed. He curled up his legs, so his feet wouldn’t touch the floor. I felt my neck and back sinch up, and leaned him back over the bed.
“Dude, you are not little anymore. You can hurt Mommy doing that. Ok, up and at ’em!”
“Huuuuugs.” I hugged him again, then he laid back down in bed.
“Wil, up, up, up!”
“Oh, Mom, too much energy. Hugs.” I hugged him again, and pulled him up.
“Ok, Mom, go.”
“You promise to get dressed if I go?”
“Ugh, yes, mooooom.” From a playful inchworm into an irritated teenager in seconds.
We decided what he wanted for breakfast– “Mac n cheese?” “No.” “Sandwich?” “No.” “Eggs?” “No.” “Oatmeal?” “Yuck, Moooom.” “Ok, hot sandwich?” <pause> “Yes, and tomato soup.”
As I left his room to make his breakfast, I pulled the door almost shut, so I could peek through the crack to make sure he was getting dressed. After putting the sandwiches on the stove, I quietly walked up to his room and peeked in the crack of his door. He was talking to himself about his outfit. He always puts his pants on first, then his shirt. If I’m ever helping him get dressed after his swim lesson, and I forget this rule, he looks at me like I’m a crazy person, then says in a very matter of fact way, “Pants first, mom, then shirt.”
Wil always has a theme in mind when he gets dressed. On Monday, he emerged from his room, threw his hands up in the air and proclaimed, “Grey Power!” He, of course, had on a grey hooded sweatshirt with grey pants. He also happened to match the winter sky that day. I thought, that’s one way to make the most out of a grey day. Especially on a Monday. Unfortunately, even though that day started on a high, it ended on a low. His team and I weren’t sure of the triggers, but he refused to work in his afternoon classes and I picked him up after school rather then him taking the bus.
Today he walked out of his room with a Luke Bryan concert t-shirt his Aunt Carrie bought him. “Look at me, Mom!” (Last night watching Jeopardy, I said to Wil, “if they had Luke Bryan as a category, you would win.”
“Really, what?” He ran up to the television, mistaking my
comment for Jeopardy having a real time Luke Bryan category.
He yelled out, “Kill the Lights!” “Here’s to the Farmer!” “Strip it Down!” “M-O-V-E!” “Drink a Beer” then, under his breath, “No, don’t say that at school. Don’t say beer at school.”)
Wil sat down to eat the breakfast I made him–two warm ham, cheese and spinach sandwiches on whole wheat buns and bowl of tomato soup heated to a lukewarm temperature–he doesn’t like anything hot.
“Which shoes do you want today, black or brown?” This is always a consideration each morning and he enjoys making this choice. The black shoes are his tennis shoes, the brown are a little dressier. Today he chose brown, even though he wore sweatpants. His Luke Bryan shirt must have had him feeling fancy.
When it was time to go, he still had half of one of the sandwiches left and some soup. Occasionally this happens, I believe on purpose, because he wants to bring some of his breakfast to school. I put his sandwich in a baggie with a plastic spoon, and poured the remainder of the soup into a thermos.
He pulled on his backpack, grabbed his baggie and thermos and we were off. He sang Luke Bryan songs the entire way to school. (When I’m driving by myself, I can’t listen to a Luke Bryan song. It’s lackluster without Wil’s backup.)
When I brought the car to a stop in front of the school, Wil bolted out with a quick, “Bye, Mom” and in his low muscle tone way, he ran without much bend in his knees, moving slightly side to side, his backpack bouncing on his back, baggie and thermos in hand. I sent up a prayer for his good spirits to continue.
Every day is a process, with or without a playful start. It’s fun when kids are younger, but now Wil is 13 years old. In many ways I’m thankful for his continued youthful spirit, and in other ways the process gets tiring after so many years. His independence is growing in leaps and bounds, yet still, he requires lots of encouragement to get on with his day and with extracurricular activities. I’ve tried to rush him, and it backfires each time. In fact, a little reverse psychology can go a long way. I used to say, “Quick like a bunny!” but now I say, “Slow as a tortoise.” He’ll start slow, find it to be funny, then get on to the activity.
While a playful start doesn’t guarantee a good day, my own personal calculations show a sharp rise in success with a playful start. So I play the numbers, inch by inch, each and every day. Once he bolts out the car door, in the mix with many other kids and experiences, it’s anyone’s guess as to what may trigger him to turn the day upside down or flip it back around and land right side up. That’s when a good team at school and prayers come in handy.
Give us this day our daily hot sandwich and tomato soup, as we start our day in play, may we keep our day right side up, and remember not to say “beer” at school. Amen.
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Twist, turn, kick. Sputter. Smile.
His swim instructor was showing him how to roll over from his stomach to his back in the water. He’d start, face down, floating, then twist himself around. As he made the twist, he’d flail slightly, body twisting hard, with a little kicking to get himself all the way around.
He’d pop his head to the surface, his clear-lensed wide-eyed goggles—he affectionately calls “Frog power” when he puts them on—showing wide eyes underneath. His breath sputtering, spitting out water. Then catching his breath, laying on his back, realizing he succeeded, a huge smile spread across his face.
Again, he’d twist, kick, turn his body around. Low muscle tone making the task challenging, his observing mom thankful for the important core strengthening that was happening. Again he surfaced, sputtering, eyes wide, spitting out water, catching his breath. Then the smile. Big. Proud.
Again, he’d twist, turn, kick. Sputter. Smile.
Again, again, again.
Each time, the twist would come a little quicker. The sputtering less. Soon, the smile was already there, shining underwater, revealed as he completed the turn and lay on his back. Floating.
And his observing mom found herself smiling too, thinking isn’t life just like that?
