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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Book Cover Complete!

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The cover for the upcoming book Stories of Wil: Puberty Part 1!

This work of love is almost ready for print!!! Inside is a compilation of many of my blogs (with additional edits and/or expansions) of our experiences entering puberty with Wil. My hope is to connect with readers who share similar experiences as well as opening a window of understanding.

A few formatting completions to make and we are ready to go!

Many thanks to Sarah Block for your eye for detail and formatting expertise; this cover would not have come together without you; to Brittany Toth for your care and creativity with the cover’s design, and to Cheri Vincent Riemer, my fellow T-21 Momma, you captured Wil’s spirit on our visit to your family’s lovely home on Lake Lansing.

As soon as Stories of Wil: Puberty Part 1 is ordered for print, I will let you know!

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.

Remembering Leading Hands on the Journey to Acceptance

Reading a passage on a special needs social media page, I came across a sentence about our kids’ first friends being their therapists. Tears immediately flowed with that sentence. Have you ever found your emotions processing words faster than your intellect? My heart felt the words before their literal meaning reached my brain.

Then when my brain kicked in, I thought, “here I am, 13 years into this journey, fully embracing this journey, and still find myself crying at the drop of a hat over an early memory.” No matter where you are in your journey of acceptance, even if you have come full circle, you never, ever forget your early days of passage into what you now embrace.

In the early days, I didn’t know many people who knew what this life was. That is likely true for many. Those around you either don’t know what to say, or try to console you. So, those first steps are full of so many questions, but you are unsure where to direct them at that point. The therapists, for many of us, are those first people to ask real questions of. The therapists, for many of us, are our first solid signs of hope. The therapists, for many of us, give us more than words. They give with their actions.

Wil’s first therapists were on the side of acceptance I valiantly wanted to find my way to. In the way they were there for Wil, they were also opening the passage to me. I could ask very real and upfront questions, and they responded with very real and upfront answers. They were people in the know. And they cared. I may not have been there of my choosing, but they were there because this was their chosen life’s work. That is some powerful stuff.

Wil’s therapists moved Wil’s limbs and motivated Wil to learn in their knowing ways. I watched the ease in which they did this. Then I would try. I immediately failed. What looked so easy for them was so very new to me. They patiently showed me again and again. And again and again. In the process, I learned the beauty of patience–that not all things come when we want them, but in their own time. As Wil was learning, though he took many trys, there would be small advances. Advances I never would have noticed if I already knew what to do. I learned there is beauty in the space between the advances. I learned there is never an ordinary moment. What we call ordinary means we are glancing over too quickly. I learned that not everything that comes to us is natural–we need to go through the process to acquire our second nature.

I learned my second nature through Wil’s therapists. I learned patience through Wil’s therapists. I learned to pay attention to the space between the advances with Wil’s therapists. I crossed the bridge to acceptance by the leading hands of the therapists.

Though I have come full circle to acceptance, within that circle there are still the broken parts I pieced together to create the whole. The emotions my heart registers before my brain, never forgot those broken parts. They are the building blocks that I ever so learningly, patiently, lovingly and dedicately worked to link together with the leading and helping hands of Wil’s first therapists, Wil’s first friends, on this journey.

Thank you, always for helping put those pieces together Wil’s very first therapists:
Theresa, Janet, Cathy & Shelly

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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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If We Really Want To Change the World

FDAD6FC0-E4D8-41C5-8351-0F31377C8D35There are many beautiful pictures of our young children with Down syndrome. Their bright, shining smiles. Their eyes that truly sparkle. They tug at our hearts. They pull us in. They truly are special. They will change the world, we proclaim. And we mean it. This is a story of embracing acceptance and running full speed ahead with it. Those around us are drawn in by the bright, shining smiles and sparkling eyes. Those around us cheer us on. It is a story of triumph we all feel good about. This story is one of acceptance, and once this acceptance is embraced, we live happily ever after.

If we really want to change the works, where is the rest of the story? Where are the pictures of these shining, world-changing children as teens? Going through puberty, with pimples and hormones? Where are the pictures of our world-changing children facing the social isolation many teens go through and then some because of communication processing barriers? Where are the parents navigating this with very few pictures and stories to lift them as they did when their children were younger?

If we really want to change the world, where are the stories of these shining, world-changing children as adults? Unless these beautiful children have grown to land modeling roles or started a small business, we hear nothing more from them.

If we really want to change the world, we need the rest of the story. We need to see how our kids navigate puberty and social isolation. How kids with Down syndrome’s behaviors change when mixed with hormones, communication barriers and cognitive delays. How there is no “American Girl” for puberty book for our kids.

If we really want to change the world, adults with Down syndrome need to be seen for the valuable individuals they are. They don’t need to own a store to do that, or fill the cover of a magazine. Those accomplishments are to be applauded, but so is our friend who is volunteering at the food bank or the library. The steps it took to get them there may be downright heroic. But we don’t know that, because many of us don’t know the rest of the story. When adults with Down syndrome continue to be seen as “cute” they will never been given the value and respect they deserve.

If we really want to change the world, we need to see the rest of the story. The book full of fresh new chapters each and every year. Smiles with braces. Sparkling eyes that have grown crow’s feet. I know those faces forever tug at my heart. They will forever pull me in. Because I am dedicated to the rest of the story.