down syndrome awareness

Win/Win

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Wil had not slept in his own bed for months. He said he had a bad dream. 

A bad dream could mean lots of things. It could mean something scary in his room. A toy, a book, a game. A bad dream could mean a scary occurrence that he couldn’t shake. 

I dug deeper. Tell me more about your bad dream. He gave me a clue: Elmo cats. I knew right then the culprit. Mr. Tiger. 

Mr. Tiger really isn’t all that scary. He’s a fluffy puppet with soft white mutton chops, friendly eyes and is more prone to smiling than biting. What he does do, though, is come on the screen and let out a roar.

We have a 100lb yellow lab and the fact that he rarely barks and is an intensely laid back dude is the reason he and Wil are best buddies. Other than Woody, Wil is terrified to be in another dog’s presence. The same goes for babies. 

Though he’ll look at pictures of round-cheeked babies and floppy-eared dogs all day long and exclaim how adorable they are, in person there is nothing more terrifying. 

Babies and dogs belt out loud noises unpredictably. Unexpected loud noises are Wil’s kryptonite. He’ll shrivel up on the ground with hands clamped over his ears. Sitting through his sister’s basketball game with the sporadic buzzes and whistle blows takes enormous convincing complete with the promise of a hot dog and Sprite. He’ll sit up at the very top, hands clamped over his noise cancelling headphones. As he’s gotten older, he’s become more aware that not everyone wears headphones. He prefers not to wear them when he can brave it out. But with babies, dogs and sporting events, even pride cannot win. Without headphones, he’s not going in.

Mr. Tiger has turned into an obsession for Wil. He wants to turn away but he just can’t. It’s like a Jack in the Box. He keeps cranking the handle (or hitting the rewind button) even though he knows one of the turns is going to make him jump.

I took the DVD out of his room. I talked to him about it. Still, he’s not going in.

I’d put Wil to bed, and at some point during the night he’d make his way to the basement, take out a sleeping bag, drag it up the stairs, and spread it out on the couch. It didn’t take long for him to create a deep dip in one of the cushions from his tired tush.

I talked to him again. I showed him the divet in the couch cushion. He was conscientious of his couch imprint. So he moved his sleeping bag to the living room floor. 

I didn’t think the floor situation would last long. Our living room floor is hardwood with a wool carpet spread over it. Not the cushiest sleeping material. But he persisted. 

I tried bribes. I made promises I’m not sure I could have kept. The call of the tiger was too strong. On the floor he slept. 

Yesterday I googled ways to keep your toddler in bed. He’s far from a toddler, but I simply needed a way to get him back into his bed, and there were no resources on how to keep your teenaged son in his bed that fit our situation.

So last night I took Wil’s sleeping bag and spread it on the floor of his room. I told him I was going to sleep there to keep the bad dreams away. He looked at me like I was crazy but he agreed to sleep in his own bed. For the first time in months. Wil went to sleep, in his own bed, without issue. I was so relieved at the success of this idea, that though my sleeping quarters weren’t ideal, my relief relaxed me into sleep. 

When I woke up, I silently exited Wil’s room. I went into the kitchen to make coffee and get ready for the day. Not a peep from Wil’s room. His door stayed blissfully closed. He went in and stayed in. 

About two hours later, I opened Wil’s door to wake him for school. He was not in his bed. He had taken my place on the floor in the sleeping bag, snoring away.

I guess we both had our wins.

A New Flight Path

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On the day of Wil’s birth, the nurse said he was “floppy” which is a soft marker for Down syndrome. He melted into my chest. The soft, defined curve of his eyes warmed my heart like I’d known this love forever. At the same time, the shape of his eyes sent a hard marker of knowing deep into my gut. I wouldn’t let the knowing climb up to be processed by my rationale. I held it down like a child with hands clamped over her ears, singing, “la-la-la-la.”

We all have dreams for our children. Even if our children do not step into those dreams. Even if we don’t really expect them to. It’s natural to form a moving picture view of the future ahead. Our dreams point the way. When I could no longer hold down the knowing of Wil’s diagnosis, confirmed by a doctor’s solemn nod, I found myself staring into a blank future. In what direction do I go? It was a stand-still in time.

I stared into Wil’s eyes and wondered at the seeming randomness of it all. Though I received many words of consolation and many words of encouragement, I felt directionless. I had no reference point. I was lost even though people all around me shouted directions.  

My first step was to call a trusted friend, Beckie Brewis. She ran the First Steps Parents as Teachers program which Katherine and Elizabeth were enrolled in. She was also the Early On service coordinator (a program for children with special needs ages 0-5). She put me in touch with therapists for Wil. He soon started speech, physical and occupational therapy. Beckie and Wil’s therapists not only helped him take his first steps into speaking, walking and picking up Cheerios, they also helped me take my first steps into this life too. 

When Wil first learned to walk, his physical therapist, Shelly, helped him up onto a balance beam. Shelly held one of Wil’s hands and I held the other.  On a balance beam the only reference point is forward, or you fall off. “Look how he does that,” Shelly said as Wil advanced along the beam. “He doesn’t know how to walk on his own yet, but he is now able to place one foot in front of the other.”

Today Wil and I run like airplanes – our arms out wide, we dip, we skip, we circle, we jump, we zig, we zag, all through the landscape. Our path may seem directionless to some, but we know where we are going because our grounding is solid. Imprinted in the earth are our footprints, one in front of the other, the path of trusted friends alongside steadying our gait. 

Learning to walk through the blank space was how I learned to fly. You can’t spread your wings standing still with your hands clamped over your ears. The knowing that I once held down is now the air that lights my wings….arms out wide, ears open, eyes curved to the sky, la-la-la-la onward we go.

Photo: Beckie and Wil

Proper Pacing

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When Wil goes outside, he just goes. Once he’s out there, he figures out what he’s going to do. Sometimes, it’s picking up sticks. Piling them up, or bringing a few choice specimens home.

Other times it’s walking the lane all the way back to the woods. He may get into mischief by investigating a hunter’s deer feed pile. Or he may walk all the way back to the river. He’ll stand there for hours throwing sticks into the river. When he’s done with that, he’ll turn around and come home. No matter what, he finds his way to adventure.

On one of his river trips, I threw sticks with him. Thankfully, I forgot my phone at home. After tiring of the stick throwing, I took a look around. Then I looked up. There, poised on a tall dead tree was a woodpecker. He started his pecking. I watched him for a time, then just listened. Listened to the river, the sway of the trees. And lots of silence.

Wil enjoys the silence. The world is fast for him. Here, in the woods, nature is his pace. It’s funny how hard I try to get him to “keep up.” Come on, Wil, zip up your coat. Come on, Wil, get your shoes. Come on, Wil, it’s time to go.

How often do I go his pace? How often do I go the pace of nature? To listen to the woodpecker. To feel the flow of the river. To feel the silence?It’s amazing how scared of challenges we are, and yet, standing in silence may be our biggest challenge yet.

How silly of me to rush Wil, when instead, he’s the one drawing me forward.

Just Friends Being Friends

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

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

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

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

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

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

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

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