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)

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How about adding a little WILingness to your Life?

Hi All!wilingness01

I’m pretty darn excited!! I have a real live website now with a real live logo and everything! And to use Wil’s words, I did it ALL BY MYSELF! The website is www.WILingness.com

I even created a fun, upbeat short 45 second video introducing my son, Wil! Head over to Wilingness.com and check it out! I just know it will leave you with a smile!

My writing over the years has found it’s way to a central theme, which is opening my eyes to the power of small miracles all around us, and I only discovered them when I had the WILingness to see them. (clever, huh?!)

Sooo, this website will have some blogs you’ve seen before, and lots of new upcoming ones, all with the central theme of “WILingness.”

Now that I have the video thing figured out, I’ll be doing some of my blogs via video podcast. It’s big girl time now! 🙂

I’m only just getting started, but do me a favor and stop by to check out the VIDEO, LIKE Wilingness on Facebook, and SHARE and/or comment away. And I have a page on this new website titled WHY WILINGNESS if you are still confused about the name 😉

Thanks for checking out www.WILingness.com!!! Your comments are requested and appreciated!!

All the best,

Christie

 

Why Real Life Ninja Turtle Warriors Eat Ice Cream

Wil vanilla shake 2015

In the late summer, the kids and I went to a local wine and cheese store. I wanted to pick up a nice bottle of wine and gourmet cheese for my mom’s birthday. We parked, and headed inside.

There is an ice cream shop down the street and the kids asked if we could go afterwards. It was a warm, calm and slightly overcast day. Perfect for sitting outside.

“Sure, I said, let’s get these things for Grandma, and we’ll walk down there.”

They practically skipped into the wine and cheese store with that news, and I started my search for my mom’s gift. It wasn’t long before Wil found nothing interesting and wandered off to the stairs and made his way to the basement. I quickly inquired if there was a door to the outside (that Wil could escape from). No, the owner said, don’t worry, the only door goes to the bathroom.

I allowed Wil that time downstairs, while the girls and I tasted cheeses. We tried varied thin slices of many exotic and sharp flavors. We had fun, relaxed-mother daughter time that is not always possible with their busy, younger brother around.

We agreed on a white sharp cheddar and raspberry for Grandma that packed a strong bite followed by a touch of sweetness. As we waited in line to check-out, Wil had made it back upstairs and wandered over to the coffee grounds. Katherine saw a mess in the making, so without a word, she walked over, took his hands in hers, and started spinning him in circles. Gentle and slow, mindful of the fragile merchandise around them, the two of them singing and laughing.

The potential mess gleefully averted, we walked out, purchases in two pretty black bags, and made our way down the street for some ice cream. Everyone was in great spirits (who isn’t when there is ice cream ahead?) The street was busy, so I had one hand on Wil, as he can take off at a moment’s notice. I needn’t have worried, he stayed happily beside his sisters without a glance at the street.

When we approached the ice cream shop, there was a face painter set up just outside of it. After we went inside and bought our ice cream, we found a table just adjacent to the artist and watched passerby’s stop to get their faces painted. One boy chose an eerie white skull, 2 girls selected blue and pink glitter-covered butterflies, and one mother decided on a graceful swan princess.

As the line to the artist diminished, I looked over to the twins and asked if they wanted to go next. They laughed and shook their heads. Apparently, at the ripe age of 10, they were just too grown up for such silliness.

Wil jumped to attention. “Me, me, me!” he said raising his hand. He walked up to the face painting chart and chose a green and orange ninja turtle.

I walked over to the stool with him, and he climbed up on that tall stool on his own, and turned himself around and sat down. The artist asked him to close his eyes. He squinted them real tight, just like kids do when you tell them to pretend to sleep, and peeked with one eye.

The girls and I watched the artist as she went to work, smiling at her squinting subject. When his orange and green ninja turtle mask was completed, the artist held up a mirror for his observation. A look of satisfaction spread across his face, and he hopped down off of the stool to finish his vanilla shake.

Soon afterwards, we all piled into the car, and Wil asked me to adjust my rearview mirror so he could take in his reflection from the back seat. He repeatedly rotated his head this way and that, eyes straight and steady in the mirror taking in every angle of his ninja likeness the entire drive home.

Peeking up at Wil observe himself in the mirror, I marveled how Wil so naturally slows things down, just enough, so that I will never look at a typical day as typical again. There are so many adjustments to our family’s regular day to day that I can never move too fast to miss the many varied perspectives on even the simplest of moments.

And, isn’t that how we learn to be Ninja Turtle Warriors? By slowing down, just enough to look at a moment in all of its varied angles, so when things start to get messy, we are not stumped, rather, are able to jump in, grab that moment gently by the hands, and spin and sing our way through it, until the moment has passed, and we find ourselves in a new direction, run-skipping our way to the ice cream store.

Yep, I’m absolutely sure that’s what true, real life Ninja Turtle Warriors do.

 

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.

Magic in Mosquitos

Last night, Matt built a fire in our outdoor firepit. The girls eventually tired of it, and went inside. Wil wanted to stay, so I stayed with him. He plopped up on my lap in an old wire chair, and we gently rocked back and forth, my arms wrapped around him. Dusk was settling in, our yellow lab Woody was splayed out on the cool of the grass, and the kittens started play fighting, rolling and tumbling in their agile, quiet way, over the low rocks of the retaining wall. All very relaxing and satisfying. Until the mosquitos started buzzing around.

“Wil, these mosquitos are going to eat us up. I’m sorry, but we need to go in, buddy.”

Wil extended his arms and legs, took a long, thoughtful look at them, then said, “Hey! I’m not food!” He burst out laughing, which of course, is highly contagious, so I immediately joined in.

Life is full of magic, I must never forget that.

I find I can look at something so long, that I think I know it. So when it shows up to threaten the party, I can quickly become annoyed by it, bored by it, or even get to the point of being jaded by it. Then, POOF! Something happens where I see what I thought I knew in a whole new way.

Life is so much fuller when I have the “WIL”ingness in my life opening my mind to the magic!

TBT

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

To Those With the Gift

FullSizeRender
There are some people who are just extra special, that have the “gift.” I am not one of them. At least in the sense of what I am speaking.

Today, we had an 8-year-old friend of Wil’s over. In the last 2 years, Wil has not been invited to a birthday party or a sleep over, yet I know very many kids his age are doing so.

I understand. I get it. I don’t say this to make anyone reading this feel a sense of guilt. It’s simply our reality.

I watched Wil play ball with a group of typically developing boys. They were so kind and patient with him. They encouraged him and included him fully. But when he grew tired of the game and walked off of his own will, I could see the sense of relief in the boys’ faces. They could just play. They did not have to be patient. They just played with others of their own level.

You may say, well, that is a good lesson for them, and yes, I would agree it is. But, really, they are 8 years old. They just want to play. Didn’t you? I know I did.

So today, when Wil’s 8-year-old friend, Lila, who asked for this play date with him came over, I was just as thrilled as Wil. She was not cajoled by her mother out of the act of kindness or charity, she simply out of her own will, like most typical 8-year-old kids, asked for a play date with someone they like.

I was also a little nervous. When she came over before, Wil’s two sisters were here. This little girl is smart. Very intelligent and very brave. She can easily hold her own with tight twin girls who are two years her senior. When you are 8, that 2 year difference is a big deal, but not for her. When Wil had his stubborn moments, he could have a break while she played with his sisters.

Not today.

Wil’s sisters were with their Grandma and Grandpa Taylor. A fun swimming and boating day with another 10-year-old friend an hour away.

The play date started off well, a new introduction to toys, then lunch, that part is easy for just about anyone. But, Wil does not speak the same level she does and he still loves Dora and Doc McStuffins. Kid stuff. Fine by her, we’ll just move on to something that doesn’t need an age limit. Let’s play Wil’s drums!

BOOM BANG CLING (oh, yeah, the cymbals, too). Out came the recorder, and whatever else I had in that music box. It was the happiest I’ve been as a mother of three in the midst of ear shattering noise.

Then it was off to the hose, and the slide that goes into the little pool. Splashing, spraying, laughing and squealing. Water is always equal playing ground. Until, Wil sat at the top of the ladder and wouldn’t budge.

I have seen similar instances to this at the park. Wil has very little control over his environment. Everything and everyone move so much faster than he does. So, what would you do if you felt you had little control over your environment? If you could sit at the top of the slide and make everyone wait, when they are usually moving at warp speed ahead of you, wouldn’t you delight in making them wait? Just a little bit? So, at the top of the slide Wil sat, un-budging.

At the park, I see two reactions. Kids either “mother” and sweet talk Wil, or they just wait until I come over and take care of the situation.
Not this girl. This girl has the gift.

“GO DOWN THE SLIDE WIL!” She says loud with authority.
He gives her a look, sees that she means it, and down he goes.
I love it! She called his bluff!

You see, there is this delicate balance between being mean, being enabling, and seeing where someone is simply being a stinker.

She saw stinker, and she called it, frank, to the point, and the next moment they are back to laughing and spraying each other with the hose.

It seems so simple, so typical, from the outside looking in. But, I’m on the inside now, and Wil is just not treated in that typical way, because, well, in some ways, he’s not typical, and people just don’t know what to do with that. So when I see something like this, I see it for the gift that it is.

I’ve heard it said that everyone should have a child with special needs. And, I know exactly what the author was talking about.

How do you appreciate something like day so completely? How can a ride down the slide have so much meaning? How can a simple play date fill you so fully?

I was not born with the “gift.” And, I think, that is exactly why I believe I was gifted Wil. I would have missed so much without him.

~This post is dedicated to those of you who have “the gift” …you know who you are, and I am so very thankful for you! And, for those of you, like me, that do not have it, there is still hope, if we simply pay attention and learn from those who have it. Life is so very much brighter that way.

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