This week’s story is an excerpt from “Stories of Wil: Puberty Part 1” (publ. July 2020)…
When I woke Wil up, he was very sluggish.
“Hey, buddy, time to wake up,” I said. I sat on the edge of his bed and tickled him lightly under his chin.
“Hmmph!” Wil turned his face into his pillow and commenced fake snoring.
“Oh Wil, I almost forgot. It’s your favorite day of the week today. It’s Monday. Happy Monday, Wil!” Wil turned his head from his pillow, opened his clenched eyes, and looked up at me.
“Ugh, Mom. It’s Friday.”
“Hmmm, I’m pretty sure it’s Monday today. Let’s go Monday!” “Mom,” he bolted upright in bed, “it’s Friday.”
“Ok, I guess it’s Friday. Ho-hum. How boring. The end of a week of school. I think the beginning is much more fun. Too bad it’s not Monday. Time to get dressed now.”
“Oh, Moooooom. Hugs now.”
“Yes, we can’t forget our hugs,” I said, and hugged him. “Ok, let’s get up and dressed and ready for our Monday.”
“Oh, Moooooom. Ok, I’ll get dressed. Go Friday!”
Later that morning as I was driving all three kids to school, Elizabeth said, “So Wil, what’s for lunch on Mondays?”
“It’s FRIDAY!” Wil replied.
“Oh, it is? Phew, I thought it was Monday,” Elizabeth said. Then as they all exited the car at school, Elizabeth said to me, “Have a great Monday, Mom!”
“You too, Elizabeth!”
“Sheesh, you guys. It’s FRIDAY! Let’s go Friday!” Wil laughed and took off running to the school.
A sluggish start can easily extend itself into a very challenging day at school for Wil. Silliness is the kryptonite to his sluggishness—it doesn’t always work, but it’s always worth a try (and the bonus is the silly start added fun for all of us). Let’s go Friday!
7th grade was one of Wil’s most challenging years. He entered a new school — the Jr./Sr. High School — with new teachers, new schedules, all while going through puberty. Mix that together with delayed communication skills and it was one heck of a ride!
The only constant were his friends he’s had since elementary school; and the steady calm of his paraprofessional, Kristi Campbell. When Wil went through multiple behavior changes that year, his friends already knew Wil as Wil. Wil is their friend that gives the best hugs, always knows how to make them laugh, will sing and dance anytime or anywhere, and sometimes gets stuck.
Wil would get stuck almost daily in the lunch room. Nearly anything could be the cause for a shut-down in this type of transitionary period between classes. Kristi had to do some serious detective work. Is it too loud in the lunch room? Did something happen in class just before lunch? Was he anticipating his next class? Or did he just want different salad dressing? Kristi’s navigational skills and Wil’s friends were often the only thing that got Wil from Point A to Point B during that time.
Fast-forward 2 years later and Wil tells Kristi if it’s too loud, why he doesn’t want to go to a classroom, if he’s tired, if he needs a break, and he asks for the salad dressing he wants. It doesn’t mean he doesn’t get stuck anymore, but now it doesn’t last as long.
When Wil came home from his first day of 9th grade, I asked him about his day. He was excited to see Kristi and his friends. He mentioned having lunch with Lila and Ashley but not Sarah.
“And Sarah too, right?” I asked. Wil shook his head. I asked where she was. Wil shrugged his shoulders. (Though Wil now has the words, he’s also very much a teenager that may choose not to use them.)
The next day Sarah’s Mom, Heather, reached out to me. Heather Stommen was Wil’s 3rd grade teacher and he excelled under her tutelage. And she didn’t give him extra special treatment because Wil has an extra chromosome — ask any 46-chromosomed student about Mrs. Stommen and you’ll hear all-star reviews. (Kim Clore was Wil’s paraprofessional in 3rd grade and had been with him since 1st grade. Knowing Wil as she did, combined with Mrs. Stommen’s teaching skills made for a strong year of growth. As you can see, consistency is an important factor for Wil).
Heather said that Sarah came home from her first day of 9th grade full of enthusiasm. Sarah told her mom and her dad, Pat, all about her day. Her excited conversation continued throughout dinner. After dinner, the family moved into the kitchen to wash dishes with Sarah still gushing about her day. Then she came to abrupt stop and burst into tears.
Sarah’s reaction brought Heather and Pat to an abrupt stop too. Then Heather saw what triggered this change in emotion. The Pringles can on the kitchen counter.
Back in 7th grade, Wil’s teachers and I sat down to come up with a behavior plan. The idea was to reinforce positive behavior as Wil navigated puberty and a new school. We tried many, many things. Some of which worked not at all; some at best sporadically. I was giving Wil Pringles as a special treat if he rode the bus home. So we tried Pringles. They worked 95% of the time! Not the healthiest choice, but at that point, we were just trying to get Wil through the day.
The Pringles strategy caught on. By 8th grade it became a game amongst Wil’s teachers to find a new flavor of Pringles, and Kristi always had some on hand. Wil’s social studies teacher, Ms. Kastel, would give Wil a Pringle’s cheer for a job well done.
Sarah was in Ms. Kastel’s class with Wil in 8th grade. Ms. Kastel came up with names for them depending on the lesson — Sarah-toga and Wil-bot stuck.
Sarah had intended to give the Pringles can to Wil the first day of 9th grade. But she discovered they didn’t have any classes together. Not even lunch. Ever since elementary school, even if they weren’t in the same classroom, Sarah would make a point of visiting Wil in his classroom. Sarah was distraught at not seeing her friend. The friend who always made her laugh.
Fortunately, a class switch Sarah had applied for was approved the 2nd day of school. That class switch also required she move to Wil’s lunchtime. Sarah-toga and Wil-bot re-united again!
Every year with Wil I count on change. Every year with Wil I count on his growth. Every year I count on the consistency of the friends, families and educators that don’t count chromosomes (but may count Pringles); they count on the whole of who Wil is.
“Isn’t that what we all want?” Heather said. And with her words, I count my blessings.
Wil has a karaoke machine in the basement. He flips the “on” switch, dials up the flashing lights, but the microphone remains in its clip. He cannot be tethered by such things.
Every single day, be it a weekend morning or a weekday after school, Wil inserts a Luke Bryan CD in the karaoke machine or cranks up country songs directly from his iPad — the use of the iPad does not exclude the need for karaoke lights. (Currently his favorite starter song is “Buy Dirt,” by Jordan Davis featuring Luke Bryan.) He’ll then grab the handrail of his mini-trampoline and drag it across the carpet. He lines it up directly in front of the karaoke machine and hits play. He then gets to jumping and singing full blast. This can go on for hours.
If Wil comes across a song he likes but doesn’t know all the lyrics to, he’ll replay a verse over and over until he memorizes it. Then he’ll do the same with the next verse. And the next. Wil knows the full lyrics to over 100 country songs. Without Google.
When he’s tired, he’ll say, “Phew!” Then stomp up the stairs and walk out to the back porch. He’ll take a seat on the slider and rock back and forth. A breeze will brush the side of his cheek. He’ll tilt his head up and say, “Ahhhh.” He may notice a looping bumble bee, the shrill of a hawk, or grazing deer in our back field. These are not new experiences where we live, but Wil expresses his excitement each time as if they were. “Listen, Mom.” “Mom, look!” “Deer, Mom!”
Wil is frequently the last one at the dinner table. Katherine and Elizabeth typically set up their homework on the kitchen island. I’ll linger at the table with Wil or clean up in the kitchen. Last night after dinner, as I washed dishes, Elizabeth stayed at the table and talked to me about her AP Literature class.
“We are reading ‘The Catcher in the Rye,’” Elizabeth said. “Do you want me to read you a chapter? You spent so many years reading to us. Now I’ll read to you, Mom.”
I sat down next to Elizabeth as she read to me, and Wil finished his dinner. I was transported back to simpler times.
When Wil was born I worried on all the challenges. The learning curve was high. Like Wil, I replayed new verses over and over again to absorb them. In that I also absorbed something you can’t know through Google. The soul within the verse.
It is the challenges that shed a light on the soul of the simplicities. It’s like Wil flipped the “on” switch in my life, and the lights have never stopped flashing no matter what medium they illuminate. I’m reminded of the aerodynamic beauty of a bumblebee loop; how the shrill of a hawk cuts through the blue sky; I’m newly refreshed by a breeze across my cheek. Now I’m brought back to the joy of being read to — by my own daughter. I could listen for hours.
She usually wears shoes to golf but in this heat, my guess is she wouldn’t leave the house without her flip-flops. She slipped off her flip-flops at the driving range and sliced the golf ball just as expertly as she did with shoes on.
She sat down to brush the dirt off her feet. Her bare feet were lifted to nearly chin level. Hypotonia (low muscle tone) allows our kids with Down syndrome great flexibility. The loose dirt fell off, but a dark stain remained on her heel. She wanted that to come off too, but wasn’t able to brush it off. She knows me as Wil’s mom, so I bent down and asked if I could help. She nodded. I poured water from my water bottle across her heel then scrubbed with my hand. She tilted her foot inward to get a better look, but never let her feet fall below chin-level. The dark stain had faded but she shook her head. Not good enough.
I poured more water on her heel and scrubbed again. She tilted her foot inward, took another look and shook her head. Another parent ran up to the golf course’s restaurant to get some napkins. But even those didn’t remove the dirt to her satisfaction. Her dad soon walked over, as he was volunteering on the putting green. By his expression I could tell he knew what was happening. He bent down and had a quiet conversation with her. She finally let her feet fall down to the ground then slid on her flip-flops. Victory! She took her dad’s hand, I waved good-bye and they headed toward the parking lot.
The next day was equally as hot, but the evening had slightly cooled, so I sat on the back porch and Wil got his recumbent bike out. He expertly maneuvered the handles to make perfect cuts and turns across the grass. Sweat dripped down the side of his face but I don’t think he even noticed. Wil turned his head toward me and smiled every few seconds to be sure I was watching.
When Wil was a baby he wore tiny lycra biker shorts with the inseam sown together. Otherwise his legs would flop out as Wil also has hypotonia. The idea of these shorts was to strengthen his hips and train his body to keep his legs in. Every time I watch Wil ride his bike, I’m brought back to those tiny biker shorts.
Wil clomps heavily when he walks, and has a slight side-to-side swagger. Wil had speech therapy with his friend Teddy this summer. Teddy’s mom and I would always share a smile as Teddy and Wil clomp, clomp, clomped off to the classroom together.
When Wil was born, I was told by parents who were ahead of me on this journey: “It may be hard to see now, but your life will be so much fuller with Wil in it.”
That remained stuck in my head because it both struck a chord, and yet felt too abstract. I wanted more details. I wanted to know how my life would be fuller. What did that mean exactly?
But how do you share with a new mom how endearing a flip-flop stand-off is when she is navigating the complexity of acceptance? How do you explain the depth of joy in watching your child ride his bike when she is navigating doctor appointments and therapies? How do you share the feeling of a deep-down connection in another mom’s smile when she is bewildered by a new journey full of new, unknown people.
My answer to that now is no more detailed than the response I received over 14 years ago. I had to first embrace the complexities before I fully received the gifts of the simplicities.
Wil’s friend CJ, who we were visiting, propped himself on the tube next to Wil. Elizabeth laid down on the opposite side. CJ’s dad, Randy, asked if they were ready. All three gave a unanimous thumbs up. Randy fired up the boat and CJ’s mom, Cheri, was already expertly snapping pictures. Heavy clouds loomed; we wanted to tube as much as possible before the storm hit.
With Wil’s apparent confidence, Randy took the tube over some higher waves. Wil’s smile never wavered.
Last year’s tubing expedition took loads of coaxing to get Wil on the tube. It was Cheri who was finally successful. She climbed on the tube wearing her sunglasses. She told Wil she didn’t want to lose them, so the tube would stay right next to the boat. Wil inched his way onto the tube next to Cheri. He had a tight grip and winced at every slight movement.
Once Wil secured himself next to Cheri, he looked around the lake in awe. He couldn’t believe it! He’d made it onto the tube. After crossing that threshold, Wil never looked back. His bravery had clearly stuck with him into the next summer.
CJ, who will be a junior in high school this year, gives daily weather reports which he started during the pandemic. His weather reports became so popular that the local news has also broadcast them. CJ is a daredevil with watersports, is on the school’s marching band and bowling team, and shoots a mean 3-pointer. CJ, like Wil, has Trisomy 21, the most common form of Down syndrome. CJ recently started strength training and flexed his biceps for us. CJ asked Wil to join him in a few push-ups. Wil jumped right in with him. It became clear Wil needs to improve his core and upper body strength to do proper push-ups, but he saw CJ do it, so he knows he can do it too with time and practice.
All of CJ’s interests may or may not match Wil’s, but it’s important for Wil to see what can be done by a slightly older peer. When Wil was a toddler he watched his sisters, Elizabeth and Katherine, swim in the lake. He wanted so badly to swim like they did but he didn’t like how the bottom of the lake felt on his feet. Even with water shoes, he was hard to convince. One day he put on one of his sister’s bathing suits thinking he could magically swim. He quickly found that wasn’t so.
My parents, who live on the lake, kept walking Wil to the steps that led into the water. Little-by-little, step-by-step, he eased in. With time, encouragement and practice, mixed with the desire to swim like his sisters, he learned that he didn’t need magical powers. Now when he steps into the lake and jumps on a raft, his smile never wavers.
Wil doesn’t have to sink repeated 3-pointers to have value (though he’s sunk a few). However, each new jump he achieves adds value to his life. There is no magic behind it — it’s role models like Katherine and Elizabeth, my parents and friends like CJ, Cheri and Randy plus a dose of desire, patience and leaps of faith.
The smile on the other side of the leap, though…that’s all magic.
Last night my neighbor came over to deliver some squash and zucchini from her garden. Wil was sitting in the Lazy-boy watching Wild Kratts. He’d been to the pool, then outside playing, and had just finished eating dinner. He was chillin’.
My neighbor, Nancy, asked him some questions. He didn’t want to answer. Nancy takes Wil to the Dollar Store on a weekly basis to help him with life skills. She also has an adult son with autism. She understands how these situations can go. Wil kept making “umf” responses. “Well, I guess I am interrupting his TV show,” she said. “See you tomorrow, Wil.” As soon as she left Wil said, “Dollar Store with Nancy tomorrow.”
As simple as this moment in time seems, it was not to me. First of all, Nancy understood Wil. She urged words out of him, but didn’t force them or give up, either. She took time to understand the situation. And many times, as simple as that sounds, it’s not so simple when you don’t understand.
I wrote recently about Wil having a melt-down at my parent’s house. My sister and her kids were visiting, staying with my parent’s. Wil wanted to spend the night after a day of playing. It was not a good scene and all of us were exhausted afterwards.
The next day, going back to my parent’s to visit, we discussed the incident. My sister said her daughter’s friend works at a camp for kids with disabilities. This friend said it is helpful to anticipate what is going to happen. I sat there speechless. In my mind, my ego responded first. A 16-year-old girl who spent a summer with kids with disabilities knows more than I do? Puh-lease! My next thought was that I live in anticipation. Every single day, even for the simplest of tasks. Just going to the store might take an extra half-hour because Wil gets stuck on what hat he wants. Or he simply refuses to go. I’m always planning ahead for whenever and whatever. That is my norm, as well as the norm for Katherine and Elizabeth. Then I realized she just doesn’t know. She is trying to help. She lives 5 hours away and sees Wil about twice a year.
And that’s what it mainly comes down to. People aren’t trying to hurt, they just don’t know. They aren’t trying to be mean, but our egos kick in because we live this every day. Its easy to get defensive rather than inform. Every single moment is a teaching moment in our lives; not only with our kids, but for the world that surrounds us.
“Oh, ok.” Wil went to his bedroom and got dressed.
Though Wil’s 8th grade year had its challenges, in comparison to his 7th grade year, it was smooth sailing. But it took what we learned in his 7th grade year to break way to the “oh, ok” of where we are now.
When 7th grade hit, so did puberty and hormones. And they hit hard. Wil developed multiple new behaviors that stumped his teachers and me. With Wil’s communication delays, I repeatedly asked my own series of whys to uncover his thought processes. I knew we would break way to that “oh, ok” moment, but I didn’t know what that looked like or how many whys it would take to get there.
My first personal experience with a behavior plan was in Wil’s 7th grade year. Behavior plans are more “if then” plans that follow their own timeline. Wil’s teachers and I planned ways to support him through his pubescent changes. We learned from each experience, asked more why questions in relation to that experience, and revised the plan with what we learned. In this way we inched ahead, why-by-why, experience-by-experience. Eventually, one of his barriers would break and he’d fly forward at full speed. I stood there with my head spinning at the seemingly instant transformation.
Wil has a recumbent bike that he drives like a madman. He cuts corners burning rubber and flies down the grassy hill in our front lawn. The fenders over the front and back tires are bent from spills. Fortunately a fall from a recumbent bike isn’t far. Wil gets back up, and gets back to riding full speed ahead.
Wil recently rode his bike over something sharp— likely a big rock, but he won’t tell me what that something was. Maybe in time he will tell me. Whatever it was, it tore a hole through the actual tire and into the inner tube. His bike was sidelined.
I’ve never fixed a tire on a bike before. I checked the sizing of the inner tube and tire, bought a new one of each, and set to work on replacing it. When I googled directions on how to fix a bike tire, I read that a proficient cyclist can complete the task in about 7 minutes. For the novice, like myself, it can take 20 minutes or more. I didn’t time myself, but I can assure you it took me all of that 20 minutes and more.
After replacing the tire, I gave Wil’s bike a quick test spin. Then I called Wil to come outside. Seeing the new tire, he jumped on his bike and tore around the driveway without hesitation.
“It’s fixed mom!” He said in surprised awe.
“It took me some time but I got it done for you, Wil.”
“Why?” Wil asked.
“Because I love to see you fly.”
“Oh, ok,” he called back to me already nearly to the bottom of the hill.
When fueled by our why, no matter the timeline, we find a way to fly.
It was just after 9 p.m. and I heard the back patio door click shut. I tucked Wil into bed only moments before. But I knew it was him. My alarm was set for 3:20 a.m. to rise for work, so I’d recently tucked myself into bed too.
I got out of bed, walked to the kitchen, and opened the patio door. I saw Wil walk to the far edge of our yard. He stopped at the outcropping of alfalfa. About five deer were scattered across our back field contentedly grazing. Two of the deer lifted their heads; more in curiosity than with concern.
Woody, our yellow lab, sniffed the grass close to Wil. Woody would have created chase with the deer in his younger years. But now with arthritic hips, Woody guarded Wil in close proximity.
Wil turned around and saw me standing on the back porch. Instead of running away, he walked over to the hammock. Woody followed him then rolled in the grass. Wil attempted to open the material of the hammock wide enough to lie down. He decided that was too much work, sat down on the hammock, gripped the material on either side of him, and swung gently as if on a swing.
“Not tired yet, Wil?” I asked.
“Hmph.” With this response, I knew pressing or prying would only tighten the knot of his emotions and he’d clamp down, resisting any type of communication.
“It’s a nice night. Look at Woody roll in the grass.” Wil looked at Woody, then back at me. His open response to my comment, even if non-verbal, was a good sign. I decided to take a chance. “Are you upset because your sisters aren’t home?”
“Yes,” he said and dipped his chin.
“Don’t worry, they will be home soon. How about I walk you back to bed and give you extra snuggles?” I said.
“Ok, Mom. You going to work in the morning? Can you make me breakfast?”
“Sure, Wil. I’ll leave it on the island for you. I bet I’m back home before you’ve put your plate away!”
“Thanks, Mom. Hugs!” Wil jumped off the hammock and barreled into me. Only a year ago he likely would have responded by running away from me or remained on the hammock refusing, or unable, to explain his upset. But on this night, with only minimal resistance, he shared his feelings of sadness about his sisters not being home. And as he typically makes his own breakfast, his asking me to make it revealed the extra comfort he desired in my absence.
I tucked Wil back in bed, with the extra promised snuggles, then crawled back into my bed. I’d barely pulled up my sheets when I heard Wil’s heavy footsteps move toward the kitchen (with low muscle tone, he’s not exactly light on his feet). This time it wasn’t the patio door that I heard shut. It was a kitchen cabinet. Then I heard Wil scoop up ice, pour it in a cup, turn on the faucet, and walk back to bed.
“Ah, fresh,” Wil said (a phrase he commonly uses sipping a cold drink). With these words of satisfaction, I knew sleep would soon follow. And it did, for both of us.
A milestone in communication had been attained that night. It was mutually understood…no explanation necessary.
Wil went to the doctor for his well visit Friday afternoon. He’s now 5’4” and 136 pounds. Wil was a champion through all of the doctor’s tests and questions. In previous appointments, he would act silly if he didn’t understand a test, or glance at me when the doctor asked him a question. On this day he kept eye contact with the doctor, followed her cues with each test, and answered every one of her questions.
Katherine recently secured a job as a server. She asked Wil to quiz her on the menu. It was a natural choice for her as one of Wil’s favorite subjects is food (he reads take-out menus for fun). Wil held the menu up, ordered a meal, and Katherine told him what sides or dressings it came with. Wil had so much fun with this task that he pointed out all of the items to me too!
Wil is no longer a “little guy.” Each forward step of independence is incredibly gratifying to see. But like any teenager, he also asserts his independence when he doesn’t want to do something. Wil has summer speech therapy twice a week, and occupational therapy (OT) once a week. He enjoys going so I was surprised when he resisted one morning. I tried but was unable to deduct the reasoning behind it. Thankfully Elizabeth was home and I needed to take Katherine to work first. So I told Wil I was leaving for speech and OT without him and was very sorry he made a decision to miss it. Katherine and I left. We hadn’t made it more than one minute down the road when my cell phone rang.
“Hi Mom,” Elizabeth said, “Wil has something he wants to say to you.” Wil got on the phone and said, “Hi Mom. I want to go to speech and OT.”
Now knowing the consequences, Wil is unlikely to refuse again. But to reach that point, it can take such measures that require more than just me. I could write an entire book on how innately understanding Katherine and Elizabeth are when it comes to motivating and supporting Wil.
There have been times when Katherine, Elizabeth and I have had to physically move Wil when he won’t leave a situation. It’s happened at the airport, when for a reason only known to him, he refused to board a connecting flight. It’s as emotionally trying as it is physically — for all of us.
On one recent occasion, Wil didn’t want to leave my parents’ house. After much reasoning on all of our parts — even bribing with a Coke — he sat unmoving on the floor. I knew once he left my parents’ house he would unwind from whatever was keeping him stuck (once Wil is out of the physical location he’s stuck in, it’s like an emotional release too).
When it was clear he wasn’t going to move, I came behind him, reached under his armpits and clasped my hands in front of his chest. Katherine and Elizabeth lifted him by the legs. He cried and fought us. It was awful. When we got too tired and set him down on the ground to catch our breath, I bent down to talk to him quietly and Katherine hugged him. When we managed to get him in the car, it was like a switch went off in his head. He was completely fine. However, the switch doesn’t flip that easily for Katherine, Elizabeth and myself. I sat in the car trying to hide the tears streaming down my face so as not to upset him again.
On our drive home, Wil belted out the words to a Luke Bryan song, and Katherine and Elizabeth rolled their eyes as they usually do. I took in a deep breath and took in the equilibrium of the moment.
Wil’s timeline is different from our timeline. Finding an equilibrium in that is one of my greatest challenges as his parent. I suppose that is why there is such a thing as growing pains. There is no growth without them; and yet the growth is always worth it.
Wil sat down in the outfield. A bead of sweat slowly slid down the side of his pink cheek. The outfield was made of rubber; I’m sure it felt like a cushiony relief to him. Wil gets overheated very easily. I placed an icepack I had carried with me on the back of his neck.
At his previous Challenger baseball game, Wil played 2nd and 3rd base. The weather was cooler and my parents were spectating, so he had plenty of showing off to do. Wil ran after every ball and threw it to his coach on the pitcher’s mound without hesitation. (The coach is diligent about Wil stopping, taking a step and throwing. Wil is equally diligent about following those instructions.)
A batter in a wheelchair bunted the ball and her sister grabbed the handles of the wheelchair and ran her to first base. The next batter runs every base in a single hit, no matter where his ball lands. Sure enough, after he hit the ball, he tapped all the bases (passing those already on base), then sped across home plate. He raised his arms in success and the spectators cheered. The next batter stepped up to plate and the inning would continue until every player made it home.
When a strong hitter came up to bat, the coach asked everyone in the outfield to back up. Wil didn’t budge. A father, who had been standing near us with his son, walked over and crouched down to talk to Wil. The father then reached out his hand, Wil took it and stood up, then we all walked deeper into the outfield.
I thanked him and he said, “It’s always easier when it’s not coming from Mom or Dad. Music is the only thing that motivates my son. Some days I swear I have constant music playing on my phone.”
Last Sunday at our Down Syndrome Support Team picnic, Elizabeth and I walked by a boy of about 10 years old. He was walking backwards with his arms spread out wide. His younger sister, a cute blond with pigtails, was trying to run past the width of her brother’s arms and escape to the parking lot. Their parents were a few feet behind them packing up their belongings.
The boy smiled at us and said, “One thing I don’t like about Down syndrome is they don’t listen!”
Elizabeth and I laughed. “We know exactly how that is,” I said. “I think we’ve chased her brother at least one thousand times!”
I find it incredibly refreshing, rejuvenating actually, to be in places where our kids can be themselves without stares, sideways glances or need for explanation. No matter how diverse or similar our children’s disabilities are, there is an underlying understanding. Though you can feel it on the inside, on the outside, it is seen in gestures such as an outstretched hand, cheers for home runs (in any order), and laughs about siblings.
Kindness, I have found, looks quite “typical” in any place it is shared.
'WIL'ingness = Willing to Embrace Extra in Life 