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)

Alcoholism and Intuition

There is a lot of alcoholism in my family, and I have had a hard time making peace with my own drinking over the years. I have enjoyed a glass or two of wine every night. It relaxed me, and is something just for me in a life of being a caregiver to my family.

For some that is a lot, for others it is not enough, but the point is, is it ok for me? And, I decided it’s not. I have too many past feelings and emotions surrounding alcohol. I’ve discussed it with Matt, and because he has not dealt directly with alcoholism, he does not understand my fear of one or two glasses a night. He is supportive, but cannot relate. What can these few glasses hurt? I drink responsibly, so why can’t I allow myself this? That makes perfect sense, except for the nagging feeling within me that it’s not ok.

I’ve learned, over the years, and especially with raising a child with more needs, a lot about self-care. It is a must. I also have learned to shut out other people’s “Shoulds” for me, and listen closely to my intuition and follow my own direction.

So, I decided to stop this glass a night drinking. I will still enjoy a few cocktails with Matt on the weekends, but the habitual week days, no. So, on my last shopping trip, I did not buy any wine. I admit it was hard. I had grown to rely on that glass for my relaxation. But, I know, to quit a habit, and be successful in sustaining it, I must put something positive in its place.

I heated myself some decaf tea, stirred in a big, sweet spoonful of my neighbor’s homegrown honey, took a cozy fleece blanket outside and sat on the back porch. The cat hopped up on my lap, and her purr motor was very lulling. Soon, Wil found me outside, pulled his wagon out of the garage, full of toys, and he pulled it around the yard singing to himself.

Positive reinforcement for kicking a habit? Hell yes! This experience is exactly what sat right with me deep down.

No matter what anyone else says or does, living at peace with my inner self and beliefs is what fulfillment is really about. There are no if, ands, buts or shoulds about it.

So, I raise my favorite tea mug from my back porch to yours, and I pray we all find the strength to bring forth the joy within ourselves to live the lives we personally choose to live.

Shine on in your own way, every day. We are worth nothing less.

life_is_good_half_full

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.

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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ON ROYALTY, GOLDEN PEOPLE & FENCES

This morning, I took Elizabeth to the orthodontist. It was a first consultation, so everything was very easy going and pleasant. Her orthodontist shares the name of Elizabeth’s twin sister, Katherine, and when I told her, she replied that we have royalty in our house. A queen and a princess. I laughed, and said, “Would you believe we also have a prince? Prince William.”

“We do, too!” She said. “He is my little prince. He was born prematurely.” We talked briefly about her William, and then eased back into orthodontic talk surrounding Elizabeth.

As we were leaving, I mentioned that my William would be coming to see her soon, as well. She asked what she would be seeing him for, and I mentioned a cross bite and the need for an expander, because his mouth plate was too small for all of his teeth. I told her he had Down syndrome, so these issues were quite typical, and she nodded knowingly and asked how he did at the dentist. I told her it was a big struggle at first, but the last two visits, now with Dr. LaRock, had gone quite smoothly. Great, she said, maybe I could bring him in on Elizabeth’s next visit to get him comfortable here. Then, she shared with me that her William also had learning issues, due to his prematurity, but he had a great teacher this year, the same one her other son had the previous year, so she was much relieved. I replied to that, “Yes, I understand. Every year, it’s like starting at zero. It’s a wonderful relief when you don’t have to.”

“Ah, yes!” She nodded in agreement, “It’s exactly that, isn’t it? With all of his academic issues, I just want him to be happy at school.”

There are so many pieces that go together to make that work, the parents, the siblings, the IEPs, the teachers, the assistants, the special ed director, the therapists, the peers, and the laws to be upheld if not being adhered to. I have found, in this journey with a child with special needs, the explaining can be freaking exhausting. When I happen upon a doctor, or a school administrator, that just gets it like she does, I know I have struck gold.

The royal woman who shares my daughter’s name will undoubtedly be Wil’s orthodontist.

Not too long ago, I was having a very trying morning with Wil. I left the house out of sorts, to teach a bootcamp class. I pumped myself up on the way, and taught the class in high spirits, but underneath that morning was still tugging on me. After class was completed, and we all dropped on the mat to stretch, I happened to sit down with two other mothers who have kids with special needs. We talked about typical everyday things, slow and easy, enjoying the reward of the down time after a tough class. I could no longer ignore the downward pull I was feeling, and as the class emptied out, and we still sat there, foam rolling our sore muscles, I shared that I was frustrated from my morning, and I was having a hard time shaking it. They immediately gave me a nod of understanding, just like the kind doctor earlier today. They got it. No explaining needed. They opened up, began sharing some of their stories, and though our children all had different disabilities and challenges, the underlying emotions were the same. We formed a bond, and I knew, these friends were golden.

A diagnosis immediately places you in a very vulnerable position. It can be very scary at first, it’s uncharted territory for you. But you meet people who understand, who get it, and they help you along the way when you need it. You learn, and you grow, and begin to understand how golden that innate understanding is. I have lived and I have learned. There are people who have dove in and criticized, how I “Should” be doing things this way, and “should do” that and judged every little move I made. But, the funny part is, not a single one of them has a child like Wil. They are the sideline critics, and I no longer have time for them. Their words are loud, but hold no meaning. There is a quote that says, be vulnerable, then put up a big fence.

Then, there are the golden people. When I started opening myself up, so many amazing coincidences have happened that invited them into my life, for which I am eternally thankful.

In this life, I have found that unity and a sense of community is everything. These friends are my gold, they are my shine. We serve to brighten one another. And, if you are one of those that enjoys throwing stones at things that shine, I hope you enjoy the view of our big fence.

ivy wil

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.

Why I Loved It When a Girl Yelled at My Son With Down Syndrome

The story I wrote about Wil and Lila was just published in The Mighty!!! This story touches my heart and holds a message I’m thrilled will be shared. Please feel free to share this story with friends. Thank you!

http://themighty.com/2015/09/why-i-loved-it-when-a-girl-yelled-at-my-son-with-down-syndrome/

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