special needs parenting
How Big Is a Millimeter?
Early animation was created millimeter-by-millimeter. To some, this is a tedious process — much too much work. Others enjoy the sinuous flow of the completed project, unaware of or unconcerned with the process behind the scenes. To the animator, however, the diligence, patience and love poured into every intricate detail has special meaning. Each development in the process, no matter how slight, contributes to the bigger picture.
For Wil, getting dressed is an event. He may emerge from his bedroom decked out in grey and declare the day “Grey Power!” There was a “Red Day” when, you guessed it, he wore red from his hat down to his socks. Wil is equally excited about his blended color outfits, or his self-proclaimed “fancy” or “handsome” collared shirts — accurately meeting both descriptions.
Wil’s dexterity has not reached the point where he can tackle buttons on his own. Wil’s button-down shirts are hung in his closet with the top three buttons undone. That way he can maintain his independence by pulling the shirt over his head, only needing my help for those last few buttons. As I fasten the very top button, I ask, “Isn’t that too tight?”
“Ugh, mom, no!” Clearly, I do not know fashion.
Wil’s teenaged response reels me back in time, as I often am, triggered by one of his words or actions. I’m reminded of all the still-frames in time pieced together, millimeter-by-millimeter, to create the moment we are standing in now. Such a typical scene, and yet, it’s not.
I’m brought back to a 3-year-old Wil, his hair nearly white-blond and wispy. His voice light and sweet, with an upturned, cheerful innocence. Wil sits across the table from Ms. Theresa Herron (Wil’s speech therapist since he was a baby through his grade school years). Wil points at one of the flash cards laid on the table; upon each card a picture with a word describing it. Wil is learning how to pronounce the words on the cards. He’s also learning to make associations with the pictures as they are placed into a scenario. During each session, Wil and Theresa find something to giggle about.
Theresa had an iPad set up on the table, which was an advanced concept at the time, and she videoed certain sessions. The videoed sessions, seen one at a time, may appear to be near repeats of Wil pointing at this, then Wil associating this with that. Progress made might be difficult to detect. However, if you chose to press the fast-forward button to view continuous sessions, you would enjoy a sinuous flow of Wil’s clear advances over time.
Theresa and I were like the animators as we reviewed each session — we rejoiced in every millimeter of change. Theresa would note how Wil enunciated a word in a slightly different way, or how he made an association he hadn’t before. If he’d been experiencing a roadblock, she’d gather the information we had so far and indicate a new direction to move in. Our shared celebration of each session ran deep, as we both valued the magnitude of each millimeter.
Over 10 years later, Wil’s vocabulary has greatly expanded thanks to the strong foundation of his early speech therapy days. Wil’s ability to communicate has been vital to his flourishing independence. Even Wil’s “Ugh, mom, no!” is so teenage-typical, and yet it’s not. We stand on a mountain of millimeters, special meaning built within every intricate layer, in this sinuous flow of life.
Share this:
The Dance
When Wil was born, I wondered on his differences. How would they separate him from making friends? How would his differences separate him from living a full life? What I didn’t know was Wil’s differences would become woven so deeply into our daily lives that they would be our norm.
One example is Wil’s dancing. When the mood strikes, Wil busts a move down the aisles of Target, Busch’s or Meijer. Wil gets jazzed going shopping with his sisters, because there are mirrors hanging everywhere to dance in front of.
Chopping vegetables with me for dinner is always a hip wiggling activity for Wil, and a car ride another opportunity to belt a tune out the window.
Wil’s had the music in him for so long, it’s ingrained in our lives. I forget that not everyone dances whenever the mood strikes, or bounces to the beat in their car seat, until a stranger gives Wil a smile as he rocks out to his own tune. I smile inwardly to myself, as I smile outwardly back to the stranger, how one-dimensionally I once viewed what differences meant.
Wil’s dear friend, Sarah, is a ballerina. Sarah is graceful in every sense of the word. She is tall and lithe, and practically floats on air when she walks. Wil has low muscle tone so he lands flat-footed with a slight side-to-side gait. I love watching the two friends walk together, because they could not carry themselves more differently. Sarah, however, always makes a point to walk at Wil’s speed, and when he talks, she leans over so they are eye-to-eye. Then, I can almost predict at some point during their conversation, Sarah will throw her head back laughing at something Wil shared with her. And they always find time to share a dance. It’s been that way since preschool.
On Wil’s 14th birthday, Sarah wrote in a beautifully-crafted handmade card to him:
“I am so lucky to know you. You are so amazing and always make me laugh. Goodness, you’ve gotta be the funniest person on this Earth! Your laugh is so contagious. I always have fun walking around with you and talking about lots of things. Hope you have the best birthday bud!”
As I read Sarah’s words, my eyes welled with tears. I now wonder, these 14 years later, how on earth did the differences I once so worried on become a true blessing? That this life, that such friends, have woven themselves into the dance of our lives as our norm.
At one time differences stopped me in my tracks. Now, all I see are blessings in the dance.
Share this:
It’s What Friends Do
Wil’s closest friends are five girls from school; all typically-developing. In our tight-knit community, I hear over and again how special Wil’s friends are. And it’s true. They are. My gratitude is high because I know in another tight-knit community – the community of parents who have children with Down syndrome — Wil’s friendship circle is not commonplace. I wonder, is there a special ingredient these friends have that can be shared? What exactly is it that sets them apart?
One obvious answer is Wil sets himself apart. Not by intention, but by his nature. Wil is funny, silly and goofy at times; as most of us can be. Wil belts out a good tune, and hugs heartily; as most of us are moved to do. Wil grows tired, grumpy and impatient; as we all can. Wil, however, takes all of the above to a slightly, and other times very, different level than most of us.
Last year, I drove Wil through the McDonalds drive-thru to get a Sprite (his reward, aka bribe, for not ditching the school bus to hide in the stairwell. Thanks to a team effort with his teachers, we uncovered another motivator before his teeth rotted).
“We-we-we-welcome back to McDonalds. Wh-wha-wha-what can I get you?” We were asked via the speaker under the drive-through menu. Wil mimicked the words verbatim, then laughed. My child with special needs was making fun of another person with special needs! How could he? Then I thought on this. We all have varying levels of differences. And this was an unfamiliar difference to Wil. A typical reaction for a child, and even adults, is to make fun of what is ununderstood. So, in effect, Wil was responding in a typical way. I marveled at the irony. I also wasn’t going to stand for it.
I turned around in my seat, looked Wil in the eye and said, “Wil, that is how he talks. Just like you talk the way you do, Elizabeth talks the way she does, and Katherine talks the way she does. We all talk differently. There is nothing to make fun of. Sometimes all you need to do is be patient and listen.”
“Oh, ok,” he said. I pulled up to pick-up window, and Wil leaned forward from the back seat and waved, yelling, “Hi!” Then “Thank you!” Wil has good manners when he’s not being a pistol.
One of my favorite quotes from Wil’s friend, Ashely Bobo is, “That’s just Wil being Wil.” She says this with a shrug and a smile, as any friend would. When Wil grew tired in gym class, he laid flat on the floor as his friends jumped rope. When he was ready, he hopped back into the jump rope game and his friends cheered him on.
Another favorite quote is from Wil’s friend, Lila Harvey. Wil and Lila were playing on the slide at the playground. Wil decided to plant himself at the top. When it was clear to Lila he wasn’t budging she said, “Stop fooling around Wil and get down here!” Wil considered this for a beat, then down he went. Lila knows how to call his bluff, as any good friend would.
Wil and his friends do not have a level playing field, yet they built a friendship on common ground. They are not perfect, either (everyone needs a reminder to use their patience and listening skills now and then). What they have created together is a friendship circle. In the center a revered place to meet, surrounded by a wide breadth of latitude for their varied level of differences. A circle that is absolutely duplicatable; and yet it is not commonplace. That is exactly what makes this group of friends so very special.
Share this:
Finding Wil Taylor
Wil may have only been about 4 years old, but he had mapped out every “Employee Only” door in every grocery store he’d ever been to. As I turned to pick an item off the shelf, he’d make his move.
My stomach dropped as I noticed his absence, then my brain registered what happened. I quickly scanned the area for the nearest “Employee Only” door. In the line of sight from my cart to the “Employee Only” door, Wil would surely be found making his mad dash — if I was lucky. Other times I’d look up to see the door swinging, and knew in a moment an hair-netted employee would walk out holding Wil’s hand.
When Wil had barely learned to walk, I took him to Kohl’s for new shoes (Kohl’s had the extra-wide high-top shoes that fit over his ankle-length orthotics). Wil was securely seated in the baby seat of the Kohl’s cart. I knew the shoe I wanted so I only had to scan the shoe boxes for his size. In the seconds it took me to find the right size, I turned to find both Wil and the cart gone. My heart seized. Someone had wheeled off with my child.
“Lost child?” A nearby shopper read the fear on my face. “Is that him?”
I followed her point to see Wil’s little self, his arms stretched as high as they could reach, pushing the cart down the aisle. Not only had he barely learned to walk, he’d also Houdini’d himself out of the safety strap in mere seconds.
About 5 years later, Wil escaped the eyes of a group of mothers at Chrysler Arena during our daughters’ basketball camp. “He was just right here!” One of the mothers said. “Exactly,” I replied. Fortunately, the arena was only open for our daughters’ camp, so there were no other visitors. We split up to find him, sprinting down the empty halls. One of the Chrysler Arena employees spotted Wil on the security camera nearing the outside doors. When I caught up to him, he said, “Car, mom.” He was done being at Elizabeth’s basketball camp.
Now that Wil is nearly 14 years old, he doesn’t run off like he used to. Occasionally I’ll get a call from his paraprofessional that Wil bolted out the door at school, and that she’s chasing him across the soccer field in 20 degree weather without a coat. Most of the time though, Wil tells us when he is tired, overwhelmed and needs a change of scenery. But his taste for adventure has not dissipated with his increased vocabulary.
On the weekends at home, Wil puts on his coat, hat and gloves (the only help he needs is starting his coat’s zipper). Then he says to our yellow lab, “Come on, Woody, we are going on an adventure.”
I watch them run off into the field together, thinking of all the ground we covered to get to this place.
When Wil returns he throws the door open, pink cheeks lit by the cold air, his whole being exuding an aura of energy only the outdoors can deliver. I breathe it all in thinking, this is what Paul Bunyan must feel like after an adventure well-lived.
Share this:
Struuuuuuuummmm!
As our school is in a hybrid format, the kids are home on Wednesdays. One of Wil’s assignments on Wednesday is to watch CNN10 (10 minute overview of news). In transition from one news story to another, there is a brief musical interlude. During one of the interludes, Wil joined in with some air guitar.
I thought to myself, who couldn’t use a little air guitar interlude in their day?
Rock your Thursday, friends! Compliments of your buddy, Wil. Struuuuummmm! 
Share this:
Something Good
Rain drops hit the pool deck. It was sometime around 1980. A group of about 10 of us kids sat on our towels joking that we needed a sun dance. Troy jumped up, raised his arms to the sky, kicked his legs and danced like no one was watching. We cheered Troy on from the sidelines. Troy’s brother quickly grabbed Troy’s hand and walked him to the locker room. Even though I didn’t really know Troy or his brother, I knew Troy had Down syndrome. Beyond that, I knew next to nothing about Down syndrome. I knew Troy went to a different classroom at school. I knew there were many doors closed to Troy that were open to us. And I didn’t know, until years later, that I personally closed one of those doors on Troy that day.
When Wil was about 7 years old, he developed a fear of going to the dentist. Our dentist said he could no longer treat Wil, and recommended a dentist who specialized in working with children with special needs. I walked into her office with great enthusiasm. She was sure to understand our situation and work with us. Instead, she was brusque and barked orders. But I brought Wil back to her because she was the labeled expert. She became increasingly frustrated with Wil, and it took all my energy to convince Wil to walk into her office. She told me she would need to use the papoose to restrain Wil. I looked at her like she was some medieval sorceress. There had to be a better way. I took Wil’s hand and couldn’t get him in the car fast enough. I threw my sunglasses on so he wouldn’t see me cry. (Wil gets very upset when he sees people cry, especially me.) I blasted our Music Together CD and we sang songs the entire way home in my attempt to put the dental experience as far behind us as possible.
I took a chance and called our new local dentist, Dr. LaRock. I figured since he was building his practice, he might be willing to work with us. Dr. LaRock said he would do his best to get to know Wil and better understand his situation. He thought their dental hygienist, Wendy Carpenter, would be a good fit for Wil. Wendy blocked out a two-hour time slot for Wil’s first visit. She didn’t perform dental work, but used their time together to form a relationship and familiarize Wil with the equipment. Wil left the office asking when he could come back to see Miss Wendy and Dr. LaRock again. With Wil’s words, I breathed out my pent-up anxiety and about melted in a puddle of happiness on the spot.
“Every 6 months, Wil.” I said. “I’m so proud of you.”
Wil grabbed my hand. “Hey Mom, let’s run!”
“Hey Wil, I think today deserves a dance!” Wil is never one to turn down a dance. We danced down Main Street, waving our arms, kicking our legs, and spinning around like no one was watching.
That dance was for you, too, Troy. I’m sorry I chose to cheer from the sidelines rather than stand up and dance with you in the rain. Now, I’d never miss an opportunity to dance and throw open as many doors as I can. One of them is bound to lead to something good.
Share this:
A Sucker for You
Communicating with Wil is an incredible experience. Though he has been in speech therapy since he was months old, he has always been one savvy communicator.
A tilt of his head and a smile melts you into a puddle of mush on the spot. When music takes him over, his good vibes serendipitously course through your veins with no conscious thought on your part; you find yourself both curiously and delightfully boosted. When Wil walks out the door and is hit by a breeze, he opens his arms wide and spins round and round. “Fresh!” he says into the air — this one word an invitation to open yourself to the dizzying, fresh new moment with him.
To hear Wil put words to his emotions is one of my true delights. A back-and-forth conversation with Wil was once a dedicated dream, and is now our reality. Though Wil now has a full and colorful vocabulary, he continues to be the master of condensing a myriad of meaning into one word or action.
In October, I shared with you a story about Wil refusing to sleep in his own bed. He was not forthcoming about the reason for his refusal, though he has the words. I peppered him with questions and eventually drew out one key word from him: “cats.” From that one word I had my answer. The source of Wil’s bad dream was from an “Elmo Pets” DVD. There is a “Cats” segment where a puppet tiger pounces onto the scene with a roar. The puppet is soft and cuddly, but the element of surprise combined with the loud noise terrifies and mystifies Wil. Before the bad dream happened, I found him in his room playing the tiger scene over and over. Like cranking the handle of a Jack-in-the-Box, the predictable surprise continues to startle. I removed the DVD, and the DVD player, from his room.
He’ll now sleep in his own bed for short bouts, but invariably I’ll wake up to find Wil camped out in the living room in his sleeping bag. Whenever Wil spends the entire night in his room, I commend his progress: “Great job, Wil! You slept the whole night in your room. How about we go for another night?”
After a considerable moment, Wil replies, “Maybe.” Oh, the ubiquitous power of one word!
Last week at school Wil walked down the hall with his paraprofessional, Kristi Campbell. He held a fistful of Blow-pop suckers he had been given as a gift. It was nearing time to pack up his things. While many days this is not a problem for him at all, on this day the transition built up in his mind and became overwhelming. Though he has the words to express his feelings, when the overwhelm overtakes him, sitting on the floor gets the point across much more efficiently.
Many passersby offered Wil encouraging words to motivate him up off the floor. On certain days, this encouragement breaks up the overwhelm for him. But there are also days when Wil needs a total 180 in thinking to turn his thoughts around. Kristi read what Wil was communicating that day as he remained unmoving on the floor.
“Hey, Wil,” Kristi said matter-of-factly, “can I have one of your suckers?”
“Sure,” he said.
“Ok then, let’s go.” Wil stood up, handed Kristi a Blow-pop, and they walked to his locker to pack up his things.
While Wil speaks volumes with one word or action, cracking his code can be another thing altogether. Yet when one savvy communicator meets another, it can be as easy as asking for candy from a 13-year-old.
(photo: Kristi and Wil)
Share this:
Extra-Awesome
It was 7AM. Wil was lying on his back with his chin jutted up and mouth wide open; soft snores were given free passage. I gently placed my hand on his shoulder. I felt his body give a quick shudder of awakening then his mouth snapped shut and he flipped his face to the wall, all without opening his eyes. He knew it was time to wake up for school.
Getting Wil out of bed is not the process it used to be. Last year some days could take thirty minutes of creative coaxing. And even that would not ensure a productive day at school. This year, however, his maturity has expanded. He’s had time to grow into his changing hormones that blossomed a year ago. He’s well into his second year at the middle school where the teachers, his paraprofessional and environment were all new to him. Consistency is everything to Wil.
When in-person school was halted because of the pandemic last spring, Wil realized within himself the consistency he needed. Friday has always been Wil’s favorite day of the week and lunch has always been his favorite subject. How can you beat pepperoni pizza day? But lunch time is not just about the food, it’s about time with friends. Time with friends at school is what Wil missed the most during virtual schooling. Wil is just as excited for Fridays as he ever was, but now he’s excited for every other in-person school day too.
Though our morning process has dramatically shortened due to Wil’s growing maturity and his boosted appreciation of in-person school, Wil is still, well, Wil. To motivate Wil, you must be on the same page as Wil. Force only sets you back; but an offer of a piggy-back ride may get you where you want to go. Negotiation falls flat; but bribes can be counted on. If he put the amour on tight that day, a sure-fire way to put a chink in the chains is through silliness.
“Waky, waky, Wil.” I started tickling him.
“Ok, ok,” he laughed, his head still turned to the side. “I’m up.” Then he fake snored. I laid across him perpendicularly, arched on my back, and let out some good ol’ cartoonish snores complete with a whistle (the only thing missing was a feather floating up and down).
“Hey moooom!” I kept snoring, ignoring him. Wil sat up in bed and pushed me off. “It’s time to get up!” I made a dramatic rolling fall to the floor. I knew now our morning was rolling in a forward direction.
“Mom, hug!” Wil never gets out of bed without a hug. Wil insists on it, and I never want him to stop. Because it’s what makes me stop.
Before Wil was born, I thought raising a child with an extra chromosome meant you were born with something extra, too. But that’s not the case. It’s in taking the time to understand Wil’s way of thinking, and jumping full-in, that adds extra value to my everyday life. Complete with extra daily hugs to back up that extra-awesome fact.
Share this:
There’s Just Something in the Atmosphere
Over the years, I have found it less important how people approach Wil than how they have left an experience with Wil. Wil demands a shift of heart without demanding it at all.
I’ve been involved in our Down Syndrome Support Team’s annual Buddy Walk since Wil was 7 months old. Many walkers who attend this event are long-time attendees such as myself. And it is no surprise why. When new friends attend, a look of awe crosses their faces at the sheer uplifting feeling of it all. You may say it’s the music from the band, mixed with excitement from the silent auction, heightened with a sugar-high from the cotton candy. But I know it’s something far less tangible than that.
I do not know with what expectations or intentions people walk into our event, but I do know the feeling with which they walk out. And that they will come back again. There are no strangers at the Buddy Walk. Each and every participant is folded in like family no matter where they have come from or why they chose to attend. Come as you are and you are accepted as you are, no matter your level of acceptance. Though a welcome banner announces the entry, it is the atmosphere that invites you in. You may have no musical talent but pick up a guitar, the bongo drums or a tambourine and you are part of the band. You may have two left feet, but you will meet a favorite dance partner as soon as you step foot on the dance floor if you aren’t pulled onto it first. You may have been part of the Buddy Walk for years or just walked onto the scene, but you will be received with open arms and a mighty hug just the same. It’s just how our loved ones with Down syndrome roll.
The Buddy Walk lives on in whoever has attended the event. But you needn’t have attended the Buddy Walk to know of the atmosphere with which I speak. It is our loved ones with Down syndrome who create this atmosphere and live their lives in it. And like any atmosphere, it knows no boundaries.
I’ve seen kindnesses emerge from a multitude of strangers upon entering the atmosphere Wil lives in. I have literally felt the shift in people. Not once or twice, but on a daily basis. Tight-lipped strangers visibly loosen – their eyes become softer, their shoulders relax and my personal favorite is seeing an unconscious smile spread across their faces. As they walk past us their smile holds on. You can’t smile on the outside without feeling it on the inside.
I can try to teach a belief system about acceptance of our loved ones with Down syndrome until I’m blue in the face. But the atmosphere created by our loved ones with Down syndrome meets everyone exactly where they are, accepts them as they are, and gives rise to a new level of understanding without a single teacher at the lector. Our loved ones with Down syndrome demand nothing less of us without demanding it at all.
