Christie Taylor Uncategorized

The Bright Side

Elizabeth sent me this picture of her and her sorority sister, Isabelle. They were visiting a cider mill and enjoying the day with their sisters.

I love to see her big heart and smile, and loving life on her own. She has more than earned this time. She and her twin sister, Katherine, are great big sisters to Wil. Having a brother with a disability has impacted them. How couldn’t it?

Elizabeth is a sophomore in college studying to be a Physician’s Assistant. Since her senior year of high school, she’s worked as a Certified Nurse Assistant. She’s currently working at the local hospital as a CNA with a full rigorous academic load. As a CNA, she’s worked in many challenging situations, but no matter how challenging she treats each person with dignity. Every story she shared with me shows concern about the person underneath the challenging behavior.

Growing up with Wil, which requires patience and many times schedules built around his timing, plays a big part in this. Yes many times his needs come first. I think many believe this is a burden for siblings. But there is a flip side, there always is. And that flip side is growing a deep compassion within yourself for how others think, feel and operate. This understanding for others is grown strong by living it every day.

I love to see Lizzie in pics like this enjoying time and living life for herself. She deserves time that is all about her and all about her dreams. And with that, she also always carries with her the knowledge and compassion of what it means to care about another. There is always a flip side 😊

Christie Taylor Uncategorized

Lift in Learning

Wil jumps on the trampoline. Free. Fun. Full of joy. His play is not forced; nor is it self-conscious. He hoots, he hollers. He’s in the moment. When tiredness sets in he rests. He sits on the black circular mat, looks around, and soaks in the feeling of his heart relaxing. This is not a conscious action. It’s a feeling. When his breath is caught he resumes his play. He resumes his laughter. The cycle of play and rest continues, not in perfect time, but perfectly all the same. His time on the trampoline is conducted all on his own time. And if someone wants to join in, the net is always open. His play is not pushed or forced; his rest is not laziness. It is a balance of body and mind in time and always open to friendship.

When I watch him, I wonder, can I be as free as that again? Can I still truly play? Can I still hear my inner compass? Can I be purposeful without pushing? Can I still allow my heart to rest without inviting in laziness? Society is so loud today. So many voices telling me what is right and what is wrong.

I went to buy some paint yesterday. As I walked in the young man behind the desk had very low energy. I still gave him a hearty hello and went on my business. When I went up to the counter he still had very low energy. My instinct was to be low energy back, as wasn’t it his job to welcome me to the store? I was spending my money there. But then I thought, “No, that’s an instinctive reaction to match like for like. You have a choice. Just play today. Unzip the net of the trampoline, and invite him in to play. Even on our hardest days, even if we don’t want to play, it’s still important to offer the invite.” So I shared my smile and kept my spirits high as he rang up my items. I didn’t force my joy, I just held a natural joy within me. The man then took out a $5 coupon and scanned it to my order. Maybe he used that coupon on every order, but I received it as the special $5 gift it was.

“Thank you for the coupon!” I said. He looked up at me quizzically. There was a pause. Then he smiled back at me. He accepted my invitation to play.

This summer I’m working with a student who turns very aggressive immediately. He punches, kicks, and swears. He’s called me a freak and a bitch and he’s only 6 years old. This challenging behavior is not in my wheelhouse. I’m raising Wil, a happy, joyful, and stubborn child. He’s not physically or verbally aggressive. My learning curve this summer has been high. But I’m learning a lot as the teachers around me have a wealth of knowledge and are very supportive. They’ve invited me to play.

Being on constant guard with this student is wearing at times. I need to be between him and the other students in case he blows up at a moment’s notice. One day he was particularly on edge. He enjoys going to a room with a swing and a crash pad. So I asked if he wanted to take a motor break there and he agreed. After a few rounds on the crash pad, he laid down and started pushing a bookshelf with his feet.

“Please don’t push on that. It’s not safe.”

“Why not?” He asked defiantly. He was trying to push my buttons. Fortunately, the change of environment was a break I needed too. I was able to think more clearly.

“Because it could tip over. It’s not secured. I care about you and don’t want you to get hurt.”

His attitude lightened completely when I said I cared about him. That was all he needed to hear. With his demeanor change, I also changed because my learning and understanding deepened. I had all the tools that worked with him written down. All the things to say that de-escalated his behavior. But this was off the cuff. It was not on any script. It flowed from my mouth not from thought but from something natural within me. If we had still been in the classroom with both of us stressed, I would have resorted to the script because I would not have been able to access that part of my brain. We would have both been in fight or flight. But now having had this experience, a mental block from my naturalness has been removed. I am now better equipped to handle higher stress situations, and inner knowing will have more space to come through to help this student and future others.

I’m learning to go back to what I already knew while I learn from what I didn’t know. I now recognize $5 gifts as special to me even if they are plentiful for every customer; valued gifts expand well past any monetary amount. I now will change venues when my heart needs rest so I may better serve both myself and others with a calmer heart. I will hold my natural joy and extend it – the shared energy of the giver does not deflate one and inflate the other. Just watch Wil on the trampoline. The joy he feels could light up the world.

Christie Taylor Uncategorized

Celebrate Good Times, Come On!

A sticky, filmy, wiggly smudge snaked across my computer screen. I’m not a fan of snakes, but I looked at this one endearingly.

Just a few days ago Wil was flipping through photos on my computer. They were photos of experiences at Camp Sunshine; the camp he’d be going to this very weekend. He smiled and called out to me to talk about each photo.

“Mom, a pool! Mom, a talent show! Mom, dancing! Mom, look a stage!” Wil’s finger followed the action of each photo. As he was on Camp Sunshine’s Facebook page, he went in deeper and deeper through the years. He didn’t want to stop looking, because he couldn’t contain his excitement about camp. He wanted the experience right here, right now.

It would be his first camp away from home; 3 nights, 4 days. Clearly, he was ready. I was ready for him. I’d been trying to get him into this camp for the last 4 years. When I finally was able to secure him a space, we then had an interview with Josie, his camp counselor. When we met Josie for the first time via Zoom she said, “The bad news is it’s hard to get in. The good news is for that same reason, once you are in, you are in.” Wil can go to this camp every year for as long as he lives.

When Wil and I entered the camp grounds, the camp was swimming in counselors with blue shirts on, and I’ll be darned if I could find one of them without a smile on their faces. The counselors were loaded to overflowing with just as much excitement as the incoming campers.

Many of the campers and the counselors had been coming back for years. As Wil and I waited in the line to hand medications to the nurse, we met Pete and his mom. Pete was 27 years old and this was his 6th year coming to the camp. At least 4 of the camp counselors approached Pete calling him by name as we waited in line.

“Hi!” A woman about my age with short, spiky gray hair in a blue camp shirt said to Wil. “My name is Kathy. What is yours?”

“Wil.” He smiled at her.

“Do you like fist bumps, high-fives or hugs?”

“Hugs!” Wil said. Kathy leaned in and the two embraced.

“And who is the beautiful woman you are with Wil?”

“That’s my mom!” Wil answered.

We were approached by many camp counselors just as friendly and effervescent as Kathy. Every counselor, without exception, addressed Wil directly. (You’d be amazed how many questions I get asked about Wil when he’s standing right there!) The counselors pointed every one of their questions to Wil as you would to any 16-year-old. As it should be.

After Wil was checked in and his medication handed over, it was time for Wil to go off on his own to camp. A young counselor named Conor placed a lanyard with Wil’s name badge over his head. As Wil bowed to receive his name badge, I felt the process almost knightly.

Next was the crossing-over ceremony. Multitudes of blue-shirted counselors lined each side of a walkway that lead to the cabins. Parents were not welcome on this walk. It was only for the campers and the counselors from here on.

“Do you want a loud or quiet send-off Wil?” Conor asked.

“Loud!” Wil answered without hesitation.

Cheers erupted as Wil marched forward through the walkway, pulling his suitcase behind him, never once looking back.

I stood on the sidelines trying my hardest not to fall into a body-shaking sob. My tears though, held no sadness. I cried feeling deep gratitude for the people that create a space such as this. A place that embraces my son for all of who he is. I cried seeing my son’s independence — it was an independence we had always worked toward but was never guaranteed. Many parents work this hard and certain levels are just not reached. So we celebrate every advance we work toward no matter where it lands us. And thus far, this is where we have landed and it is to be greatly celebrated.

It truly takes a village. Wil, our family, our friends, our educators, camp counselors and all of his supports. We all created this space together, in our own ways, and his independence means celebration for him, and also for the village.

Christie Taylor Uncategorized

HOW WE BEND

Today Wil and Manny went bowling. Both are teens with Down syndrome. Manny’s mom, Laura, and I share frequently about our plans, thoughts and concerns for the future. Thoughts about our boys as they age out of the school system; after friends have moved on to college, to jobs, to get married. How will our boys adapt to the change? What programs are available now and in the works for the future? And of the programs available, are they a good fit for our boys?

Last night my friend, Cheri, who’s son CJ (who you may know from his weather reports—WCJR weather) called me. CJ is graduating high school this year and also has Ds. Cheri and I shared our thoughts and plans for our boys’ futures. Cheri is always a step ahead of me in raising CJ, and I learn greatly from her experiences.

Not everyone has a teen child with Ds. We must actively seek one another out, actively seek out programs, and discern if what’s available is the appropriate fit for our soon-to-be adults. In fact, just today, Wil had an interview with a summer camp I’ve tried for years to get him into. Wil is ready for an overnight camp, but not without an aide. Just going to a typical summer camp is not an option for him. And that is the case for many people with disabilities; thus the long waiting list. The interviewer said Wil’s a really good fit, but spaces are very limited. She was wonderful, we connected immediately, and said she’d do what she can for him to get in.

Recently talking with my friend, Vanessa, who has a teen daughter w Ds said to me, “You bend for the ones you love.” That statement delivered great clarity to me. It makes sense of what connects me to a camp counselor I just met on a 30 minute Zoom meeting, but knew her innate understanding immediately; and also what connects me, on a deeper level, with my friends. We bend to create understanding and opportunities for people with disabilities. We bend together for the ones we love.

As Vanessa spoke those words, I visualized trees that stay closed in, protecting the roots they know, refusing to bend. Then I visualized trees firmly rooted in love, but with branches reaching, stretching, bending, some almost impossibly yet never breaking, open to receive the sun along with the rain — both of which serve to strengthen them.

If you were a tree, what kind of tree would you be? 😉

Christie Taylor Uncategorized

Heavy and Light

Wil loves riding his recumbent bike around our property. The challenge is I can’t fully trust he won’t go out to the road. And it’s a busy road.

I was talking to fellow mother yesterday. Her 16-year-old son, who also has Ds, is in summer speech and occupational therapy with Wil. As much as her son loves swimming, she will never have a pool. For the same reason I need to check in on Wil on his bike. She can’t fully trust he won’t go in the pool unsupervised.

Our children are teenagers. They know they are teenagers, their bodies tell them they are teenagers, and they desire the independence of teenagers. And as a parent that has raised 3 babies to teenage-hood, I enjoy a certain measure of independence too.

Last night, Matt and I were enjoying relaxing together after dinner. Wil wanted nothing to do with relaxing. He went outside to ride, and sure enough when I went to check on him he was getting close to the road. He was likely trying to make the biggest circle around our yard that he could, but again, I can’t be fully sure.

Even at 15 years old, he requires an extra level of supervision. And possibly, or possibly not, for many more years to come. With Wil one thing is certain — I won’t know until I know. (If you are a neurotic planner like me, a child w Ds is your best cure! 😂)

Many of my friends are becoming empty nesters. Matt and I may or may not be. I knew this uncertainty would be a reality when Wil was born, but now that the reality is closer, its an interesting feeling of limbo to be in.

I love my life with Wil. He is so fun to be with. We sing in our off-key voices at the top of our lungs. He still surprises me with new milestones, and huge bear-hugs that now knock me over as he’s grown. I’m thankful to fully share in his youthful exuberance.

But I also have a child that may never fully grasp the risks of certain fundamental independences into adulthood. The fullness of that can feel very heavy at times.

And yet, when life feels heavy, it’s being in Wil’s presence that purely and fully lightens the load.

Christie Taylor Down Syndrome, Uncategorized

The Same, but a Little Brighter

You know that “brillance” enhancement on your iPhone photos? How your picture is the same, but a little brighter? That’s how it is raising a child with Ds. There is a lot that is the same. So much that is the same. Then there are the experiences that take longer to emerge; I like to call it active patience. You try and wait, you try and wait, you try another tactic and wait. You continue on with active patience. Then it happens. It all comes together. Even though you’ve been trying and waiting, it feels like this big, magical surprise gift. That’s what makes it the same, but a little brighter.

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Christie Taylor Down Syndrome, Uncategorized

In Sync

As Wil has gotten older, it’s clear he needs closer friends with Down syndrome. He has wonderful friends at school that love and support him fully. As the gap in abilities with his typical peers grows and social lives expand, Wil also needs to cultivate friendships with those whose abilities match his.

Manny’s family lives in the neighboring town, so his mother, Laura, reached out to get our boys together. Manny will be entering 9th grade, and Wil 8th.

When Manny arrived at our house, it was our second get-together. We had met at Portage Lake the previous week and a friendship was formed. Though both Manny and Wil had talked of this second get-together for days, when Manny entered our house he went to the couch and Wil retreated to his bedroom. They were overwhelmed.

I took a big sigh of relief. Why? Because this was normal behavior not for just one of them, but for both of them.

I coaxed Wil out of his room, and Laura coaxed Manny to show Wil the toys he brought. Manny won Wil’s heart by bringing him a can of Sprite to drink with lunch.

The two laughed and were silly with lunch, and that broke the ice. But after lunch, they separated again. Even this separation was refreshing to me as it’s usually Wil I’m coaxing while others wait. This day, we were all gloriously on the same page, even if Manny and Wil were apart. Manny’s older sister, Grace, was there, and she kept the conversation going engaging both Wil and Manny. Like Katherine and Elizabeth (who were at a birthday party), this is Grace’s normal, and she handles it, well, with grace.

Laura suggested a movie to start the ball rolling again. And roll the ball we did — Manny chose Hotel Transylvania 3 and we played a game where we sat on the floor and rolled the ball to each other. When the music in the movie played, that was the kryptonite to whatever was holding them back. Manny and Wil broke out their dance moves. Then Wil broke out his karaoke player and jammed to Luke Bryan while Manny jammed on his Bluetooth mic he brought from home.

After the jam session, we headed outside to the driveway to ride bikes. Manny tried Wil’s recumbent bike while Wil rode his bike with training wheels. The handles on the recumbent bike are what steer it. Manny is used to using an elliptical machine, so he was pumping the handles back and forth zig zagging around. I thought that was a smart technique. With a few more tries, he figured it out and was zooming around, even on the grass!

Then I took Manny on the 4-wheeler. He “woohoo’d” the entire time. The guy has a need for speed!

Soon it was time for them to go, and we said our goodbyes until next time. I talked to my sister that evening, and told her how great it is to have a get-together where the kids are on the same level. It’s something you just don’t take for granted.

A day full of stops, starts, zig-zags, and full speeds ahead — all the while, remaining gloriously in sync.

(Photo: Potato chip lips)

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Christie Taylor Down Syndrome, Uncategorized

No Words to Describe the Words that Do

Wil was busy packing his backpack. Then he walked up to me and told me what he was doing and walked out the door. I didn’t understand fully what he said. So I watched him walk down the lane of our back field. If he turns right, that means he’s going to the river. If he turns left, he’s collecting sticks. He turned right.
I threw on a coat and gloves, hopped on the 4-wheeler, and sped down the lane. I hopped off and started making my way from our property to the woods.

But, before I reached the woods, there sat Wil – cross legged in the grass. His backpack was open, the soccer ball he packed had rolled out. In front of him was a spiral notebook. He held a pen in his hand and had written one word: Ashley.

“Hi Wil.”

“Hi Mom.”

“Whatcha doing?”

“Mom, look.” He started writing.

“Ashley summer? Yes, we’ll see Ashley in the summer.” He nodded and continued writing.

“Swimming with Lila? Yes, you’ll have fun swimming with Lila.” He nodded then wrote again.

“Eating? I know you love to eat!” He laughed and wrote again.

“With Mom and Dad. Yes, Wil, that’s right.”

“Mom, look.” And he wrote “I love you.”

“I love you, too, Wil. Very much. I’m also very proud of you.”

He smiled at me, and signed his name.

“I’m cold, Mom.”

“I bet. I’ll give you a ride home.”

Words can’t describe. ❤️

Christie Taylor Down Syndrome

Timberlake vs. Timbuktu

Wil had a quiz to study for last night. We decided together that he would study while Katherine was at CrossFit. If Wil comes along to CrossFit for a task such as studying, we typically go to Bigby Coffee and he gets a hot chocolate with sprinkles. After a few sips, some silliness and conversation, we get down to the business at hand. Last night he said no to Bigby.

“Where do you want to go?”

“Hmmm, don’t know.”

“How about McDonalds. You can get a chocolate shake, then we’ll study for your quiz.”

“Ok.”

When we arrived at McDonalds, we had an hour until we needed to be back to pick up Katherine. Wil made a quick scan of the play area. It was empty.

He tugged on my arm. “Mom, in there.”

“Ok, let’s order your shake first.” We walked up to the kiosk. He squinted.

“Put on your glasses, Wil.”

“No.”

“Here, just try.” I handed his glasses to him.

“Hey, I can see it.”

“Um, yeah silly. That’s why we like you to wear your glasses. You can see so much better.” He wears glasses for reading and occupational therapy, other than that he has no interest in them.

Wil made his chocolate shake order through the kiosk, reading every word on the kiosk proudly out loud.

“Great job, Bud.”

After the order was complete, he pulled off his glasses, and headed toward the play structure, his arm extended back to me with the glasses.

After playing in the play structure with lots of “look at me’s!” two other young boys entered. The increased noise level was enough for Wil. He made a quick exit. I followed him with his shake. He picked a table in the main area and we took a seat.

“Here are your glassesWil. Let’s do a little studying now.”

The subject of the quiz was the Empire of Ghana. His teacher condensed the lesson for him. After we got through the definition of Mali, the Niger River and Mansa Musa, I asked him, “What was the major trading city when Mali was at the height of it’s power?”

“Timberlake!”

“Wil, Justin Timberlake is a singer. He’s the voice of Branch in Trolls.”

“I see your true colors shining through, I see your true colors and that’s why I love you…”

“You love Trolls.”

“You?”

“Yes, I love Trolls too, Wil. And Justin Timberlake is a really good singer, and dancer. But the answer isn’t Timberlake. Let’s try again. What’s the major trading city?”

“Timberlake!”

“Wil.”

“Timberlake!”

“Dude, come on.”

“Timberlake!”

“Ok, it’s Timbuktu. Can you at least say Timbuktu for me?”

“Timberlake!”

“You are so silly. Do you want to watch a Timberlake video?”

“Yes, Can’t Stop the Feeling.”

We watched Can’t Stop the Feeling and True Colors. Then we got back to the quiz. I jumped ahead to the next definitions, we got through those fairly smoothly with the exception of mosque. He looked hard at the word and came out with “message.”

“Wil, good try, it’s mosque.”

“MosKE.”

“That’s right, say it again.”

“Message.”

“Honey, you just had it right. Mosque. Say it again. Mosque.”

“MosKE.”

“Good, again.”

“MosKE.”

“Good, ten times fast.”

“MosKE, MosKE, MosKE, MosKE, Ugh, ok Mom.”

“You got it.”

Then circled back to Timbuktu.

“Ok, Wil, what was the major trading city?”

“Timberlake!”

“Can you at least tell me you will answer Timbuktu on the quiz?”

“Timberlake!”