Christie Taylor Uncategorized

Tunes of the Territory

Wil had become overwhelmed and fled the situation with little warning. I chased after him and tried to get him to open up. He never did. 

Wil has grown greatly in his communication skills, and each time we go somewhere he grows in independence too. However there are multiple stops that must break way to starts. The unexpected throws Wil off and we find ourselves at a standstill. It’s all part of the territory, but at times the repeated standstills weigh on me. 

I’ve heard you need to fight for your joy. And some days I do. It seems the only way to get through at times. But whenever I take a deep breath, step back, open my eyes (and ears), I’ve found joy has a way of letting itself in.  

Last Wednesday night McKenna Marsh, a senior at Wil’s school, came over to watch Wil while Matt and I had a date night. Though we know McKenna and her family, this was the first time she would be Wil’s caregiver. Wil was very excited about this (as was I) so when McKenna arrived he ran to the door to let her in. We walked to the kitchen and started chatting. Wil’s high energy fell to silence. 

“Wil, you are very quiet. I know you are excited to spend time with McKenna. Is something on your mind?” I asked.

He tucked his head, and with a coy sideways smile at McKenna said, “I’m feeling a little bit shy.”

Joy flooded through me! Wil hadn’t retreated into deeper silence. He hadn’t run away. I hadn’t asked multiple questions to draw out his emotions. He opened up of his own will — by being a flirt! 

The next night, driving home from Special Olympics golf, with the windows down and country music blasting, Wil and I belted out the country songs at the top of our lungs. 

“Mom look!” As I rounded a curve, off to the right, hanging low over a wide-open field, the sun was an oversized fiery pink ball. Scattered clouds absorbed its color creating a brilliant sky. We fell in silent awe. 

Wil and I looked at each other with easy smiles and synchronously resumed our loud and off-pitch tunes. I never regret the weight of this territory, otherwise I may never know such heights.

Christie Taylor Down Syndrome

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. 

Christie Taylor Down Syndrome

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)