Do You See The Yellow?

Check out my latest blog on my website: Wilingness.com

I’m not sure what grade I was in, but I do know I was quite young, when my classroom teacher placed a picture on each one of our desks. She casually asked the class to take a look at it, and then, after a few seconds, she asked us to flip the picture over so all we could see was the white back side.

“Without turning your picture back over, who can tell me anything in your picture that was yellow?”

I wracked my brain yet I couldn’t remember a single yellow detail. Not a one!

A few hands shot up, and I looked around dumbfounded. How could I have looked at that entire picture only moments ago, and not remember anything that was yellow? What else didn’t I see?

Though I didn’t consciously register it at the time, this was an “ah-ha” moment for me. I was beginning to realize that though I believed with every fiber of my being I had seen the entire picture, I was really only recognizing what I had chosen to focus on, whether consciously or not.

Some 40 years, a husband and 3 children later, I found myself rushing around the house on a Tuesday night. Katherine and I were to leave for taekwondo within the hour, dinner was cooking, Wil had a book to read to me, Katherine and Elizabeth were intermittently asking for help with their homework, and I was still yearning for a shower since teaching a 2pm bootcamp class. Once dinner and homework were successfully completed, I zipped across my carpeted bedroom floor, headed straight for the shower in the adjoining bathroom, the movie reel in my mind replaying the same hurried thoughts over and again. Then, just as I was quickly padding past my bed, the glint of something at the edge of the bedskirt caught my attention. My mind and body stopped fast in their tracks….http://wilingness.com/2015/11/09/do-you-see-the-yellow/

Sky's the limit! (my son, Wil, age 5)

Why I’m Sticking With Gratitude

Yesterday, after teaching a morning bootcamp class, I zipped over to the grocery store. The plan was to make it a quick trip. I had a load of things I wanted to accomplish before my afternoon class.

Cool, I thought, the parking lot is near empty, I pulled into a front parking spot, and grabbed myself a big cart (I established a personal rule of no small carts, no matter how small the trip, after the very embarrassing small-cart-incident of unexpectedly hitting a dip in the parking lot, the abrupt stop of the cart almost sending me barreling headfirst, in plain full parking lot view, right over top). The big cart and I safely and efficiently cruised through the aisles, finishing in record speed at the check-out line, with only one woman in front of me, who was already swiping her credit card. Score!

When it was my turn, the woman behind the check-out counter smilingly asked her required questions: Had I had found everything ok, and how was I doing? We then made typical check-out counter small talk as she swiftly swiped my items; what a beautiful day it was, how warm and sunny, and so on. Friendly, yet impersonal. And, I probably would have left the store in about 3 more minutes, with a lift to my step from the ease and friendliness of the experience, but without much further thought as I moved on with the rest of my day. Instead, I turned my head to the new sound of voices entering the quiet of the store.

A small group of kids, all with varying special needs, and their educators, were walking in and grabbing carts. There was a lot of excited chatter amidst the distribution of carts, and once a cart was in hand, a child and their educator were happily off on their shopping adventure. I spotted the back of the blond head of one of Wil’s friends, Nick, as he expertly made his way down the aisle with his cart.

The check-out woman saw me looking their way, and said, “That is a special needs class from Saline schools.” To which I replied, “One of those boys is my son’s friend. They both have Down syndrome. I was hoping to catch his eye, but he went off shopping in the other direction.”

“Oh,” she said, “I was a para-educator for 20 years. My son also had special needs. He went to school at Highpoint (a school for kids with a higher level of needs).” “I know Highpoint,” I said, “I used to work at the WISD and my neighbor recently retired from there.”

“When I started teaching,” she told me, “they were just starting inclusion. I believe in inclusion, but it’s not right for all of our kids. My son needed to be at a place like Highpoint.”

“I understand,” I said. “I’m so thankful for the inclusion my son has right now. We have not had to fight for it, he naturally receives what you had to fight for those years ago. Yet, I also understand what you are saying about inclusion not being right for everyone. Though my son enjoys and benefits from inclusion, I found in certain subjects, like math, the most effective place for him to be is in the resource room. Each child is very different.”

She nodded. “My son was completely typical, then he almost drowned when he was 2 ½. After that, he had multiple special needs, too many to be at a regular school with inclusion.”

She paused, then looked me right in the eye, I could tell she was deciding if she should share something with me, then she did.

“You know, there are some things worse than dying. To have a typical child and then…”

My heart went to the pit of my stomach. I looked at her gently, and all I could do was nod. What words are there for something as heavy as that?

“My son did die, he was only 10 years old. I have 6 children, so, well, that helps.”

But, what can truly help? She did what she could to cope. She helped other parents who had kids with special needs as a para-educator. I have absolutely no doubt that many parents found comfort in her knowing nods and compassionate words when she was responsible for the care of their child each day. I also have no doubt that those kids under her care received her best. You don’t go through what she did, and do the work she did for 20 years if you don’t care deeply about the purpose of that work.

We talked a little more, but by then my items had been checked and bagged, and a man was waiting behind me in line. It was time to go. I told her it was really good talking with her, and we wished each other a good day. I know I will make a point to find her line again.

Back at my car, filling it with groceries, I thought of our conversation. It was heavy, yes, but also, I felt a huge sense of gratitude for that time with her. Gratitude that she chose to share her story with me so that I could connect with her and learn from her in my very own life experiences.

Good days are good. The front parking space, the cruising through the uncrowded aisles, the smile and friendliness of a check-out worker, and the sun burning away the clouds and warming the air. They lift us, they carry us to a certain point, and they even spread, but they don’t run very deep, because they don’t stick. We catch them and hold on to them when we can, and enjoy them, but they are unpredictable and fleeting. They come, and they go.

Stories shared and connections made as in the one at the grocery store have staying power. They stick. I am never left the same after conversations like that, and it’s a wonder, how many I have had just like that since Wil has been born. And, it’s in these very unlikely, common places where they happen.

Last Saturday, I was in the hallway at Katherine’s karate tournament. I happened to put on a necklace that morning that our Down Syndrome Support Team sells. They are beautiful, handmade necklaces, and nothing about them says “special needs” except for the fact that they are sold at our Buddy Walk each year, the proceeds going to our support group. In the crowd of people walking back and forth in that hallway at the tournament, a blond woman stopped, pointed at my necklace and said, “Buddy Walk! I have about 5 of those! I love them, and yours is especially beautiful!”

“Thank you,” I said, “do you have a Buddy you walk for?”

“Oh, lots of them. I’m a special education teacher in Saline.”

We shared a smile, and went on our own separate ways down the busy hallway.

A passing friendly comment on a piece of jewelry in a crowded public place, but it will last longer than the smile she gave me. That compliment drives deeper, because it carries with it a common purpose, a common cause, which we both innately understand in those few words we exchanged.

At a birthday party I went to at a lake, where Wil was happily splashing around, a woman walked up to me, and said, “Your son reminds me of mine when he was your son’s age. So blond, so sweet. I miss him at that age.” And, then we shared stories like old friends reconnected about our kids and our lives, except we had only met that very moment, and our only known connection was Down syndrome. I learned so much about the experiences Wil could look forward to in her stories, and she was able to look back and relive some of her son’s youth.

I can recount many such stories, in restaurants, walking down the street wearing my Buddy Walk shirt, and other such every day places. I believe that I am so easily approached with these experiences is not for any other reason than that I am open to them now, when I wasn’t before. I did not have the “WIL”lingness those years ago that I do now.

Last night, I went to bed overflowing with gratitude. Not because of a front parking spot or the ease of my day, but because I now have opened myself to the gift of looking underneath the surface shine. Diving down deeper, past the pretty and shimmery surface, down through the murky and the messy, the deeper of the emotions, and down, down, down, down, to uncover the treasure chest of connection. That is where the staying power to fulfillment is. That is what sticks.

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Shadow Animals: If you know someone who has a child with Down syndrome, don’t tell them about the dark, show them the dancing shadow animals on the wall

Katherine’s taekwondo class was full yesterday. So full, in fact, that half of the class went outside (it was a beautiful day!) to work on their forms, while the other half stayed indoors.

Over the summer months, students breezed in and out of half-full classes, parents passing with a smile, seeing each other some weeks, and missing one another the next, our schedules dotted in trips up north, interspersed with summer camps and visits with extended family. We had our pick of the seats in the exercise room, with chairs to spare where we placed notepads, magazines and summer reads we had visions of catching up on here and there while we watched our kids practice.

When we arrived, yesterday, I could feel the change with schedules now reined in and the energy high with the new busyness. Parents continuously joked and chatted, catching up with one another. Every chair in the exercise room was filled, the magazines of summer left behind, except the hopeful few that came along, were now stashed under seats, remaining untouched. Those of us without seats overflowed into the waiting room, catching a glance at our child through the open doorway to the exercise room, or through the glass doors outside.

The students outside lined the sidewalk in front of the neighboring storefronts with bare feet firm on the ground, crisp white uniforms with dark belts knotted straight at their waists, arms moving with precision and fingers so aligned I feel them slicing the air. Though steady with focus, the joy of their practice was clear in brightness of their eyes.

Back in the waiting room, Elizabeth found an empty chair, cracked open her Warrior book, intent on finishing the last two chapters. Wil decided he was going to sit center stage on the floor, with his favorite flashlight. With no seats available and people milling around, I scooted him over towards me. He started pointing the little beam of his flashlight here and there, watching the small circle of light dance around. Soon, the light found its way to the feet of one of the moms standing across from us.

She noticed the spark of light, looked over at him and smiled. That must have been a cue to him, because he ran over to her, and gave her a big hug. She hugged him right back, asked him a few questions about school, as was the hot topic amongst all of us, then he aimed his flashlight toward the floor again, and zoomed it over to a dad standing across the room. Wil’s light inched its way up from the man’s ankles, onto his shirt, until it stopped on his chin. Wil ran over to give him a hug. Looking up at the man he said, “You are tall!”

“Yes,” the dad, Mike, said. “And my son will soon be taller than me! You have to convince him of that. He doesn’t believe me, yet.”

Wil laughed at this, then zoomed his light in another direction down the hall, and off he went. He played in the hall for a few moments, then he came back and grabbed the hand of the mom he had landed his light on earlier.

“Where are we going?” She asked.

“To play shadow animals!”

It was darker in the small hallway, and he flashed his light on the wall, and in front of it, he put one hand in a fist, extended two fingers, and bounced his hand up and down, its shadow following suit on the wall.

He started singing, “Little bunny foo foo hops through the forest.” We laughed, then he asked the mother to make a shadow animal. She joined her thumbs, splayed her hands, and fluttered them.
“A butterfly!” He said. He then showed her a cat, which she followed with a puppy. I joined in with an alligator, and when we exhausted all of the ones we knew, he asked us to make up some, like a turtle, which didn’t look like much more than a closed fist. We laughed at the awkward looking turtle, and then that morphed into a snake, full with sound effects.

The class in the exercise room soon broke up, and kids started to pour out, with their big sparring bags on their shoulders, their bulk filling the hallway as they made their way to the changing rooms. The little shadow party broke up, and we all went in our own directions. Kids filing in and out, parents leaving their seats while other parents replaced them, conversations halted until next time, and new ones just beginning. Busy-ness as usual.

I made my way into the exercise room, found one free seat, feeling light and playful from our little shadow party, and the man sitting next me, seeing my smile, turned toward me, put his hand out and said, “Hi, I’m Darrin. So, you are in with the black belt club and the later nights, now. Welcome! Which one is yours?” And, I pointed out Katherine, and the conversation easily flowed from there. He told me how his son, who is only in 5th grade but a skilled black belt, had only happened upon taekwondo. His family had been eating dinner next door to the taekwondo studio, and on their way out to the parking lot, had noticed all of the activity inside, so decided to take a moment to watch through the big, glass windows. His son spotted a friend inside from school, and said he wanted to try, too.

And, I thought, how exciting life is, when one small action in your day can lead to a new passion. In some ways, life is like that waiting room. All kinds of busyness and high energy some days, where everything clicked with precision, and other days that were slower and easier, while others felt scattered, and within all of those varying days lay tiny gifts, waiting to be uncovered like shadow animals on the wall.

When Wil was born, I was told, this will be hard. Not flat out, but in more subtle ways. Only hours after his birth, our room was quiet and full of tears. They said, I’m sorry for you. I’m sorry, because you have a hard road ahead of you. I received folders upon folders of information about geneticists, counselors, support groups, and other resources to handle all of the hard. I felt scattered, with the mix of high emotions of birthing a beautiful child, yet everyone and everything around me was somber and full of concern.

As I went on, and met these geneticists, joined the support groups, began Wil’s therapies, and went through all of the challenges first-hand that the folders described and tried to prepare me for, I started noticing little things that those typed words didn’t relay. They didn’t tell me, that because this is hard, you will find within it, all of these little gifts. But, they couldn’t tell me that, because I was the one who had to uncover the gifts. Their discovery is what holds their magic.

Those folders of information and sympathizing looks all mean well, so I won’t beat them up. But, what I do wish is someone would have hugged me and said, Congratulations! Such a beautiful boy!! Oh, your life is going to be so much grander now, so much more powerful! You are one lucky lady to be blessed with this boy. Don’t get me wrong, it’s going to be hard, and full of new challenges, and the learning curve you have ahead of you is high. Then, I would lean in close, put a hand on her shoulder, and look her gently in the eye and say, the hard is the best part about it, though it may not seem like it at first. When you are going through the hard, start looking. You will begin to find all of these little gifts. So little in fact, you will find they were there all along, you just didn’t see the value of them, so never uncovered them. Oh, but you will see them now, and once you do, you will uncover more and more. And, in that, in all of that hard, you will uncover so much joy and fulfillment. There will be critics and those who don’t understand, so make a point of finding those who do. Those who walk a similar walk to you. Who understand your day-to-day. Embrace them, cherish them, they are your tribe. They understand without having to explain. That alone is worth the gold that it is. Welcome, my friend, get ready for a bumpy but beautiful ride!

Though these gifts all look different for each of us, they are always there when we are looking. They are subtle as that little tiny light in a busy room, resting not full on in your eyes to grab your attention, but quietly at your chin. If you take note of the light, you will be taken gently by the hand, and led, just for a short time, to a magical place where there are no rules, and upon leaving, back to your busy life, though nothing has seemingly changed, you have, and that is the gift’s power.

Life is hard, but it’s also very giving. I am so very thankful, to have learned the value of uncovering it’s many secret gifts.

Wil 8th bday

Slivers of Sunshine

wil star selfieLast night, as I was putting Wil to bed after his first day of 3rd grade, I laid next to him, my head sharing his pillow, and watched his smiling face as he rattled off the events of the day. He spoke just as excitedly as he had done when he hopped off the bus earlier that day. One sentence following another, though broken in places, still fully comprehensible. My boy was speaking in paragraphs!

It wasn’t so long ago, I was counting his words and celebrated the pinnacle of a 5 word sentence. Those 5 words spilled from his mouth like he’d been speaking 5 word sentences for years, only he’d been stuck in a Neverland of 2-3 word sentences for months.
And, that is how it goes. An ebb and flow of stops and starts. Just enough starts to give you the strength you need to get over the many stops.

Wil has been in speech therapy since he was a baby, and one thing that gave me great hope for his speaking ability was how he could sing full songs before even uttering a sentence. His singing was like a special sneak peak of what was to come. They were what kept me going whenever we hit a seemingly immovable speech roadblock. There would be few words, but he could belt out the entirety of “You Are My Sunshine.” His singing was like a soothing tonic, gently reminding me that he would speak, it would just be in his own time.

Wil’s preschool speech therapist had many wonderful techniques, and she would share them with me to reinforce at home. One of my favorites were the sheets of mimeographed paper she sent home with Wil (yes, that paper from back in the day, with the little holes on the perforated edges, that would come off the printer fresh with purple ink). She would write words in colored marker on those big mimeographed sheets, and after she and Wil had worked on them at school, she would send them home with him. Wil and I would scotch tape the paper up on the walls of his bedroom.

Every time I changed Wil’s diaper (potty training is a whole other blog! 🙂 ) and I would look at the sheet of paper hanging above his changing table, and recite the words written on it together. Later, when it was time to change into pjs, we would choose another sheet hanging on the wall, and recite words as he changed clothes. He thought it was great fun, and so we found it very effective. Every time he’d walk in his room, Wil would point to a paper and smilingly exclaim his speech therapists name, “Miss Theresa!”

Over time, when those words sank in and Wil began to associate meaning with them, he would start using them in the appropriate time and place, very naturally, yet quite unexpectedly. He would walk in the kitchen, throw out a word like he’d been saying it all his life, and I’d be standing there shell-shocked for a second, and then practically start jumping for joy the next, while he would be looking at me like I had just lost my mind.

Fast forward to 3rd grade, listening to my son rattle off about his day, I thought about how very blessed I am. Life is truly in how you look at things. I am forever thankful that I now know how to find hope in a song, and how old sheets of mimeographed paper hanging on a wall can feel like an arm around my family’s shoulder on this journey. They are all slivers of sunshine, edging and brightening the clouds, showing you the sun is there, lying in wait, ready to shine, in its very own time.

Travelling Light

Yesterday, Wil and I went for a ride to the vet with the kitties. He sat in the car with their carrier perched on his lap, talking to the kittens through the vents, their purr boxes motoring strong.

When we arrived at the vet’s office and got out of the car, Wil was insistent on holding the carrier, though it was too heavy for him. So, I walked, slightly bent over, my hand on the handle with his, the carrier softly bumping back and forth between us as we made our way to the door.

“I’m carrying the kitties!”

“Yes you are, big boy!”

We were not moving fast, and soon a man, his son and two dogs were behind us, and followed us through the door. One of the dogs barked.

Wil immediately dropped his grip on the carrier, covered his ears, and went to a corner of the room and plopped down on the floor.

Dang, I don’t have Wil’s ear protectors. Mental note: order an extra pair to always keep in the car for unanticipated times like these.

When Wil gets upset like this, it can be difficult to talk him back from it. This plop down on the floor way of his is a hot topic amongst those of us in our Down syndrome support group. As individual and unique in personality each of our kids is, many of our kids share this floor dropping commonality.

The world moves really fast for our kids. They are always trying to keep up, and sometimes, well, they just get upset and need everything to stop. I’ve learned lots of techniques from other moms in the group that help. Like anything, some things work sometimes, but not all things work all of the time.

Last Friday, we were at Elizabeth’s final day of basketball camp for a brief ceremony. It was very loud, and Wil was having none of it. It was a struggle to keep him in the room for the ceremony, but Elizabeth wanted me there to watch her, and I wanted to be there for her. Sitting on the floor of the basketball court, I held Wil in my lap tight, rocking him, trying to comfort him, but all he wanted was to be out of there. Shortly after the ceremony, Katherine offered to watch Wil in the lobby. Other kids had moved in there to play. Those two walked off together, and I started to relax and enjoyed chatting with the other moms while watching Elizabeth and their girls run around from place to place in the gym, getting their new t-shirts and basketballs autographed by the coaches and players of the camp.

Then, Katherine ran into the room and said she thinks Wil had followed some people outside.

I shot through the door and looked around, no one. My friends, just seeing my face, knew what was up and started their own search. My mind went in a thousand places in those few seconds, where he might have run to, how fast he could get to the street, maybe he ran straight to our car and climbed in, he’s done that before, how are we going to survive the rest of the summer activities if this hypervigilance with Wil is required each time. His running off tendencies had dramatically decreased as he has gotten older, because I can reason with him more so he understands the dangers, but when he gets upset, sometimes, there is just no reasoning with him.

My friend Tracey called out to me she had spotted Wil. He did not go outside, in fact, he was on a basketball court happily dribbling a ball with another boy. Huge sigh of relief from all of us.

I watched him bounce, and laugh, and enjoy this time, where only seconds ago he was so very upset. The room was quieter, now, and he felt free.

The very next day after this basketball camp, we would have a full day at Katherine’s outdoor taekwondo testing, and I knew the length of it would be difficult for Wil. It would be loud, it would be long, so I brought along his ear protectors and snacks and knew there would be a small playground for him to enjoy.

Katherine’s day of testing went much better than Elizabeth’s ceremony. Wil happily played on the slides and swings adjacent to the testing area, all sounds muted by his ear protectors, and when it came time for Katherine to test, my friends quickly offered to keep an eye on him on the playground while I watched and videoed Katherine. Later, when it was time for the potluck lunch, one of Katherine’s instructors came over and offered to take Wil through the food line and help fill his plate, did he want a hamburger or hot dog?

Back at the vet, they sent us into a room right away. I assured Wil it would be quiet in there, so we walked in, his hands still over his ears. Once inside, he visibly relaxed, we let the kitties out of their carrier, they started exploring, Wil followed them around, and everything was A-ok.

After the kitties 2 shots and a clean bill of health, Wil and I left that quiet, friendly little room and went back out to the lobby to the check-out counter. I only needed to make a follow-up appointment for a second set of shots and for the kitties to be spayed. Wil’s hands quickly went back over his ears, and he plopped down on the floor by the wall. I’ll make this quick, I thought, and we’ll be out of here.

It was not to be.

The woman at the check-out was not un-friendly, but just a bit on the terse side. I smiled at her, and explained what we needed appointments for.

“Oh, you need to have those shots within 4 weeks, and the cats also need blood tests before they can get spayed,” she informed me.

The tech came up and told her we didn’t need one of the shots, the vet had waived it, and for some reason, that made her somewhat upset. Maybe those 2 just don’t like each other, I don’t know. All I knew was I needed to get this done and move on.

We got back to coordinating appointments, and another tech who was walking by came over and crouched down next to the carrier and was talking sweetly to the kitties. She saw Wil was upset and was trying to engage him, but he wasn’t feeling much like talking.

I could see he was about to make a run for the door, so I said to the woman at the desk, “My son is having a difficult time right now. Please mail me today’s bill, and I will call you about setting up these appointments.”

“No,” she said, “I cannot mail you the bill, it’s against policy.”

“I’ve been mailed the bill before, it hasn’t been a problem. I’m sorry, see my son over there. He is very uncomfortable and I need to settle this quickly.”

Wil jumped up and headed for the door. I ran over and caught his arm just as he was going out.

I heard the woman who had been crouched by the kitties, kindly say, “It’s ok, you can mail her the bill.”

“Thank you,” I said, and I ran back, grabbed the carrier, then caught up to Wil and took his hand, as I heard the woman at the check-out call out behind me, “I’m sorry, they’ve just changed all of the policies.”

Driving home, I looked over at Wil in his seat, carrier again perched on his lap, and he was happily singing to the cats and they purred back.

I guess I could be mad at that woman behind the desk, but I’m not. I think she genuinely felt bad at the end, and I believe life taught her a lesson more than any words I could have said to her. I understand the need for the office’s rules and policies, but we can surely be more sensitive to people’s needs at the same time. They do not have to be mutually exclusive. There is always room for adaptation, but people can easily overlook that fact.

When you have a child with special needs, you learn a heckuva lot about adaptation. You live and breathe adaptation. Your child simply does not fit within the boundaries of all of those rules and policies.

I can almost guarantee you are going to have battles with bigger institutions that rely heavily on rules, that somewhere along the way, forgot the people factor. You will butt heads with educators and program directors, and have multiple tiny instances like we did at the vet today, and learn that you now must always carry a set of ear protectors.

As you walk your way through all of the rules and the policies and the unpredictabilities, there are always angels. They appear just at the right time to help guide you through the maze of those big institutions, when you feel you can bang your head against their heavy walls no more. Or angels may appear as the friend, who can read the look on your face without needing say a word, and runs off to find your child like he was her own, and you breath a sigh of relief right next to her when he is found. Angels show up in the potluck line when you are juggling 3 kids, and gently take a plate and ask, hamburgers or hot dogs? They also appear as a crouching vet tech, who’s example opened the eyes of a policy-blind worker.

When the weight seems too heavy, the angels are always there to place their hand right next to yours, the weight softly bumping back and forth between you, as you make your way forward.Wil cats carrier

Moms around the table

There is a small group of moms sitting together at a local restaurant. They are sipping on a cool drink, it’s an unusually warm day for early May in Michigan…http://christieleightaylor.com/moms-around-the-table/

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Find Your Light…

wil star selfieDo not strive for peace…Do not strive for happiness… http://christieleightaylor.com/find-your-light/

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