Just Friends Being Friends

“I was just wondering if Wil wanted to be part of the 7 dwarfs. We were thinking he could be Snuggly, Giggly, Silly, or Smiley! Considering Wil has all those traits!” I received this text from Ashley about Halloween costumes. Ashley and Wil, now in 8th grade, have gone to school together and been friends since preschool.

I read Ashley’s text aloud to Wil. He jumped up and responded, “Yes!” Wil chose Smiley, then I received another text from Ashley: “Or Seeger was thinking he could be the prince if he wanted to.” (Seeger is another good friend of Wil’s from school.)

“The prince!” Wil said without an ounce of hesitation. Which is quite apt, as Wil’s friends, who are planning a Snow White-style Halloween, are all girls.

Our Down Syndrome Support Team holds an annual Buddy Walk the last Sunday of September to raise awareness and acceptance for individuals with Down syndrome. With the pandemic, the decision was to hold a virtual event. Wil and his friends were not to miss out, so we held a small, local walk to which about 30 friends participated in. Wil, of course, walked with his close buddies, Ashley, Seeger, Lila and Sarah. At one point during the walk, Wil decided he needed a break and sat down on the sidewalk. Wil’s friends stopped and cheered him on. With their encouragement, Wil jumped up and they all started running. The friends joked it was the “Buddy Run.”

Near the end of the walk, we climbed to the top of school bus loop. Once at the top, Wil’s friends ran down the steep, grassy hill along the side of the bus loop. Wil remained at the top, looking trepid. Once again, the cheering section arose. His friends’ cheers nudged Wil over the edge and he tore down the hill. Once united, the friends jumped, laughed and cheered in a circle. It’s just as rewarding to be the cheerleader as it is to be the cheered.

Last year, I was talking to Ashley after school. She told me about an activity in gym the group of friends enjoyed participating in together. Then she said Wil grew tired and laid flat out on the gym floor. She shrugged her shoulders, smiled and said, “That’s just Wil being Wil.”

When Wil doesn’t have the words, his actions are his communication. Wil’s friends understand his language. Wil doesn’t judge others or create drama; it’s simply not in his arsenal. In that way, his friends are fully free to be themselves. If you are sad, he accepts your sadness without question. If you are happy, he accepts your happiness fully. If you feel goofy, he’s more than willing to join you in the silliness. If you need a hug, he has one at the ready. If that’s your clothing style, then it’s cool. To Wil, that’s just you being you.

As a parent of a child with special needs, I know first-hand the fight for acceptance. I also know first-hand that acceptance is quite fundamental: It’s just friends being friends.

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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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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The Same, but a Little Brighter

You know that “brillance” enhancement on your iPhone photos? How your picture is the same, but a little brighter? That’s how it is raising a child with Ds. There is a lot that is the same. So much that is the same. Then there are the experiences that take longer to emerge; I like to call it active patience. You try and wait, you try and wait, you try another tactic and wait. You continue on with active patience. Then it happens. It all comes together. Even though you’ve been trying and waiting, it feels like this big, magical surprise gift. That’s what makes it the same, but a little brighter.

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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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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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What’d You Say?

“Oxonya,” Wil whispered in my ear.

“Oxonya? Is that someone in a movie?”

“Ugh, no!” Wil said. He leaned again to whisper in my ear, “Oloxonya.”

“Alanya?”

“Moooooom!”

“Sorry, Wil. Can you say it out loud instead of whispering it?”

He leaned in to whisper again, “Olllazanya.”

“Oh, lasagna!”

“Yes, Mom, geez.”

“Wil, say l-l-l-l asagna.” I said emphasizing the “L.”

“Oh that’s silly mom. Lalalala. That’s not how you say it.”
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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. ❤️

Upgrading the Lens

I wonder sometimes, do we view individuals with special needs as angelic, more so than our typical selves, because we do not apply the same societal pressures to individuals with special needs as we do to ourselves?

We see individuals with special needs for who they are.
For the love that they share.
For the hugs that they give.
Every achievement we celebrate for the dedication put in. But the achievement is not attached to the value of their person. They are loved for the whole of who they are regardless.
I wonder what kind of world this would be if we viewed ourselves through the same lens?

And conversely, discrimination exists by those who view individuals with special needs as less than because they only see the world through achievement. They disregard the love, the dedication, the whole of the person for a top grade or an occupation. I wonder what kind of world this would be if this view were broadened, expanded to see the whole of a person.

I wish I could say I always looked through the lens with the broader view. I can not make that claim. Life experiences have allowed me to upgrade my choice. And now that I have upgraded, I realize I’ve had the choice all along. It wasn’t the upgrade that cost me. Rather it was the narrower view.

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The Morale of the Story

Down Syndrome Awareness = Hello, meet my child. Once you get to know him, you won’t be so scared of him anymore.

Books upon books. Blogs upon blogs. Stories upon stories. As varied as they are, the message is, Hello meet my child. Know my child. Do not fear my child.

But fear is a big emotion to conquer. Fear doesn’t allow one to look at the whole of the story, rather a very narrow and skewed portion. Only love and knowledge can broaden the view.

And so, we parents, caregivers and educators continue on. Books upon books. Blogs upon blogs. Stories upon stories. We never tire, fueled by the truth and love of our children, enabling us to see the whole of the story in technicolor view. Fear can not live there. Only love.

Hello, world, meet my child.