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.

 

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Its a Stone’s Throw: Spreading Down Syndrome Awareness

BW 2015 Stommen

Last night, stretched out next to Wil in his bed, having just finished reading him his bed time story, I pointed up to the pieces of paper taped on the wall next to us.

“Where is the beetle?” I asked, and he pointed to the picture with a colorful crayon drawn bug.

“I did that one!” He said.

“Yes, I love her purple head.” I said.

“And, orange feet!” He replied.

“How do you like Ms. Wier?” I asked (Ms. Wier is his new resource room teacher).

“I like her.” He said.

“What did you do with Ms. Wier today?” I asked.

“I don’t know.”

“You mean, I’m thinking?” (A great technique I learned from Wil’s summer speech therapist.)

“Yes, I’m thinking.” (Ha! It worked again!)

“Ok, what’s ONE thing? Just one thing you did today with Ms. Wier?” I asked. “Did you count dots? Go over to the bean bag room?”

“The Fall book!” And, then it all started tumbling out.

I laid there, listening, so thankful. So thankful he could now tell me these things, and so thankful he is with people who love him during the day. People who want him to learn just as much as I do.

And, sometimes, I also feel an overwhelming sadness come over me during these same moments. I think of the sweet babies with Down syndrome in the orphanages overseas, or even children here in the US, who were given away, just because of their teeny tiny extra chromosome. Children who have no one to ask them how their day was, children who are not told they are loved. They fall further and further behind by the day, proving the statistics that their parents so feared, simply because they are not given the love, the time, or the opportunity. As these thoughts run through my head, I look, in close up view, at my beautiful boy’s face, his sweet soft pale skin, the pink cheeks, that bright smile, and his wispy blond hair. I smooth his hair back and say to him:
“You are so very loved Wil. I love you so much, I want you to know that.”

He smiles, and says, “I know!” And he goes right back to telling me all the things he did with Ms. Weir that he “didn’t know” just a few moments ago.

When I have these happy/sad moments, I think back on Mother Teresa’s quote, “I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”

Last Sunday, our Ds support group had our annual Buddy Walk. It was a beautiful, sunny day, the energy was high and the support for Wil and his friends with Down syndrome was no less than amazing! Wil and his buddies with and without Down syndrome held hands on the one mile trek, parents snapped pictures on the playground fixtures along the way, everyone devoured pizza, enjoyed cotton candy, participated in crafts and danced together. There is no fear of those 47 chromosomes on Buddy Walk day. In fact, those with the extra chromosomes are celebrated! And, the best part is, that celebration of our kids does not live only on Buddy Walk day. It spreads far and beyond. We carry that love with us, and have the power to influence others with that love; it is a stone cast across the waters creating many ripples.

I will still have those happy/sad moments lying next to my boy in the times to come; the great waves of gratitude, and the tides of sadness for the sweet souls who have been so sadly left behind. But, maybe, just maybe, for all of those that love my son and his friends, their love will spread to reach a mother in doubt at just the right time. And, that one mother, having been given the opportunity to see her child’s extra chromosome in a new light, will feel her fear dissipate. Over time, as her love grows, she, having known doubt, will become a stronger advocate, having even more power to focus her light on those mired in fear and doubt. And, so the stone is cast across the waters.

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.

Quarter Inch Cuts of Paper

When Wil was a baby, I proclaimed, in unison with many other new parents of babies with special needs, No one will limit my child! The SKY is the limit!

I see these, and many other similar statements, from new moms on Down syndrome social media pages. It is almost 9 years later, and I’m still cheering right along with them, but I know, as time marches on, so do the meanings behind these proclamations.

When Wil was a baby, though he was lagging behind in some areas, he hit many age-appropriate milestones. My proclamation remained the same. Wil is going to reach great heights!

He had amazing support in his Early On and pre-school years through his service coordinator, teachers and therapists. Communication between these professionals and myself was free flowing, and any speed bumps in Wil’s development were quickly addressed. We made it through those years with shining colors.

Sky’s the limit!

Next was grade school. I was nervous for Wil to leave our comfortable pre-school nucleus. The teachers, therapists and I were all squeezed into a room, paper and pen in hand, projector alight with IEP forms reflected on the large screen hanging from the ceiling. Form by form, we went through all of his current achievements and set new goals, accordingly. No surprises, all was going well, until a test score revealed that my 5-year-old son had scored at a 6-month level in fine motor skills. I could not stop the tears.

The sky just dropped a little.

I was very aware that Wil struggled with his fine motor skills, but that reality still hit me like a ton of bricks. I was reassured that the way the test was designed, it did not register many of the “emerging” skills Wil had, and that is why the pre-school therapist was there to pass on her knowledge and notes to the grade school occupational therapist.

This grade school occupational therapist took the proverbial bull by the horns (Wil can be darn stubborn when he doesn’t want to do something), and got to work on one of Wil’s weakest skills, cutting with scissors.

She tried everything! Specially-designed scissors, hand over hand, rewards of bubbles (Wil’s favorite), and much more, all while keeping me in the cutting loop so we could reinforce at home. Wil struggled for a long time to accomplish the pinscher grasp, so pushing his fingers together with the resistance of scissors between them was no easy task.

He simply did not have the control to hold those scissors straight, and so they would topple and crimp the paper. We had crimped paper all over! Wil got to the point of hating scissors, and admittedly, so did I!

Again and again, again and again, we would try, and his occupational therapist continued to work her tough-love magic. Then one day, Wil just got it like he’d been doing it every day.
Oh, happy, happy day!

We’ve had many such stops and starts as Wil has made it now through 2nd grade. He continues to have wonderful friends, excellent support through the schools and through our Ds support team. Yet, as he grows older, there is no denying the growing gap between himself and his peers.

I know there will be many changes and stops and starts in the years to come. I still proclaim the sky is the limit, just like I did when he was a baby, but there is a much different meaning behind that statement today. Though I still look ahead to the future, I know now, that the sky is not touched in broad, sweeping statements, rather, the sky is touched in 1/4 inch cuts of paper.

Oh, Did You Say Something About An Apostrophe? Sorry, I Was Too Busy Washing Underwear.

Wil & Ivy

Sometimes I get really frustrated with the special needs community, including myself.

Let me preface that statement with the fact that I LOVE and COMPLETELY ADORE the people of DSST. They are my tribe, my people. They are overflowing with awesomeness and will stop whatever they are doing to laugh with me, cry with me, and walk me through any situation, and I am fully present to do the same for every single one of them.

Ok, that said, let’s get down to business.

I just saw an article with the subject about whether or not Downs(as in, Downs syndrome) needs or does not need an apostrophe, and I’m over here, like, my kid has been pooping his pants for the last month, we have no idea why. Is it constipation, is it nervousness, is it nutrition, and so tell me why the heck am I supposed to care where someone places their apostrophe in the word Down syndrome again? ….http://christieleightaylor.com/oh-did-you-say-something-about-an-apostrophe-sorry-i-was-too-busy-washing-underwear/

Do I Only Love Those That Love What I Love?

I’ve noticed a very interesting dichotomy in the fight for acceptance.

For instance, on Down syndrome support pages, the majority of parents are doing their best to advocate for acceptance of our children. We rally against bullying or any derogative comments and behavior. We proclaim, “Love and acceptance for all!”

Yet, the minute someone makes a derogative comment about our children, many of these same people who just claimed “Love and acceptance for all!” are firing back with derogative comments of their own! I understand the anger, believe me, but firing back with it does little for gaining new acceptance for our cause…http://christieleightaylor.com/do-i-only-love-those-that-love-what-i-love/

kissy face

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