Christie Taylor Uncategorized

Centurion, Collaboration & Education

“I don’t want to live until I’m 100.” One said.

“Oh, me either.” Replied another. Both shared their own beliefs for saying so.

I found myself bristling. Actually jealous. And how silly of me. Who gets to choose how long they live? But what I found myself upset about was how they could take this longevity for granted. I have a child, that even as independent as he becomes, will always be vulnerable. Always.

Who will look after him when I’m gone? Katherine and Elizabeth have already volunteered, but I’d like them to have their own independent lives as long as possible. To grow into their own adult lives without the concern of caring for their brother until they are much older.

I thought deeper on my internal reaction. If I had said something out loud, they would have apologized profusely. It would have turned the light-hearted conversation into something deeper. They would have been “educated” but would have felt “bad.” These were not people who needed to be educated. They understand Wil and love him. But they aren’t living this daily life like I am. There is a time for educating, and there is a time for not educating.

There is absolutely a lack of awareness in what we do as parents of our kids. All of the extra work involved, the daily aspects of life we must consider, and the future aspects of life. Sometimes we just get tired. Tired of explaining; tired of people not understanding. Not because they are bad people, they simply don’t know. With all of this within us, it’s easy to get angry when people simply don’t know.

I have worked with many “new” people who don’t have the knowledge I do, but they put themselves in the crosshairs of tired parents to learn. Rather than beating them down for not knowing, I am grateful they chose a profession of helping.

When Wil was in preschool, his speech therapist didn’t have much experience with Down syndrome as just previous to Wil entering school the kids with special needs went to Chelsea as they had a developed program. I could have gotten frustrated with their lack of knowledge, but instead we watched the videos together, and learned together, and I’m very grateful to say this speech therapist and I have a very strong bond, and she works with Wil in high school now. The colloaboration and learning together, has been a huge asset in Wil’s life and in his success to this point.

Even when you are challenging a boundary, have respect where another person’s ideas are coming from; ask questions rather push your agenda. Find ways to collaborate. Certainly there are those out there that don’t care. Or even worse, those that pretend to care, say what you want to hear, then go do their own thing. It makes my stomach drop.

But as Mr. Rogers said, look for the helpers. I could have wasted my time beating this person down, and those fights are necessary, but I have found focusing on the helpers is what gets Wil what he needs. I put my focus on collaborating with them. Growing my relationships with them. Showing my gratitude for them. And through all the bumps, the helpers have stuck by Wil and my sides.

We all have things we fight for. But some fights aren’t worth the energy. I’d rather choose my moments to decide when bringing up certain things are just for a fight, or are they truly worth making the change.

No one knows enough to know everything. You or anyone else. I have just as much a duty of being open as anyone else. I’m not more “right” because Wil has Ds. And just as much of a duty to listen and understand where others are coming from instead of always pushing my agenda. But I do have a duty, like any other mom, to raise Wil the best I can. And I would love for him to be a helper, by being a collaborator and realizing he doesn’t stand on a special pedastal just because he has Ds. He stands there because he was a good person.

I hope to live to 100 to see it.

Christie Taylor Uncategorized

Processing Time

Wil attended his first taekwondo tournament last Saturday. The environment had the potential of causing sensory distress within Wil. I had been to many taekwondo tournaments in the past with Katherine, as she worked her way up to a blackbelt. There would be many people moving around on the gym floor, and spontaneous announcements over the loud speaker —both high sensory triggers for Wil. (Though we have a large dog, Wil is leery of other dogs because of spontaneous barking. The same goes for babies crying, sports announcers over a microphone, and events like pep rallies where crowds and loud noises erupt without notice).

Wil, however, has grown in his ability to manage sensory distress. He’s become more self-aware and only wears his noise-cancelling headphones when he feels it’s an absolute necessity (he still won’t walk into a movie theater without them). He also loves taekwondo. He thrives on his independence in the taekwondo classroom, and also being with his friends, Alex and Nick, who have been practicing taekwondo for years. He looks up to both of them, and works hard to achieve their level of mastery.

When Senior Master practices form with Wil, Wil pays close attention. With his desire to do well, mixed with his growth in sensory rich environments, I knew the tournament would be a challenge for him, but a challenge he would deeply want to rise to.

When we arrived at Saline High School where the tournament was being held, there was a long line out the door. Wil held his excitement throughout the wait for the tournament ahead. The line moved quickly and one of the Masters at the front desk welcomed Wil by name and gave him a high-five. Wil gave him a hearty high-five in return. We were off to a great start!

We made our way down to the high school gym. Wil paused at the entry taking in the crowds. The set-up was the same as Katherine’s past tournaments. There were multiple squares of black mats, parallel to one another, with narrow walk ways in-between. Each square had a pole with a number attached to the top. As Wil’s “Special Abilities” hadn’t been called yet, I suggested we wait by a mat with fewer crowds. I took Wil’s big gear bag from him, so he could more easily maneuver his way, and we walked to the far side of the room where it was less populated. Wil stood against the wall, and I could feel him stiffen by the look on his face. But I also knew he was determined to be brave.

I attempted to break his tension with discussion about Alex and Nick. He nodded but became increasingly quiet. Even if I couldn’t see it, I knew perceptively that the tension within him was rising above his ability to manage it. I suggested we walk over to the bleachers but he shook his head. I pointed to open seats at the very first row of bleachers; I said we wouldn’t even have to climb the stairs. We could just sit and relax for a moment. He started taking little steps away, and I knew it wasn’t to sit on the bleachers. He was plotting his escape. When he took a forward step, I took one with him. I took his hand but he shook it off.

To any outsider watching, when he decided to bolt out of the gym, it would have seemed sudden. I dropped his gear bag on the spot. With the narrow walkways and crowds, I would have knocked someone over with it chasing Wil. I had no idea where Wil was going, and I didn’t want to lose him in the high school, or worse, the parking lot.

He exited the gym and took a sharp left down a long hallway. Closed double doors blocked further progress, so he took a seat in the corner between the double doors and the wall. He curled his knees up to his chest and wrapped his arms around them.

I crouched down to his eye level and talked quietly to him. He dropped his head to his knees. I knew he wanted to be in the tournament. I knew he was disappointed in running away. But he didn’t know how to get out of his emotions.

I reminded him that Master would be excited to see him. I reminded him that once he got on the mat he would be having so much fun, he’d forget everything else. Then I sat down and stayed quiet. I knew he also needed time to process everything. As hard as I tried, right now the moment was up to him.

And inside of me, I had reached my limit too. In efforts to keep Wil calm back in the gym, tension built within me. Would he run? Where would he run? Was I saying the right words or was I making it worse? Do I make him stay? Do I let him go? Do I just kept my mouth shut? Time always gives us the answer, but in situations like this time wasn’t on our side. Wil’s “Special Abilities” division would be called when it was, whether Wil was ready or not.

I was growing increasingly frustrated with myself, mixed with a sadness for him. Here we were, Wil 15 years old, and I’m sitting in a hallway with him. Will this ever get easier? Will things always be this struggle of wondering what will happen? Will I always need this patience and forethought with everything we do?

I know from experience that each tournament will be better. That Wil will know what to expect from his own experience, and we can talk about it with growing effectiveness. He can tell me if he wants to go, or not go, fully understanding the environment he’s walking into. When Wil feels ready to compete in a tournament, it will be the best day ever as we’ll both have grown from this very experience.

But that’s for another day and another time. Right there and then in the hallway, there is no sugar-coating it. It was just plain hard.

I asked Wil if he wanted to go home. He said yes. I told him I couldn’t go get his gear bag without him. That he would have to walk back through the crowds with me to get it, but that we would go right back out to the car.

So we walked back through the gym and grabbed his gear bag. I gave him credit for being so brave to walk back in, and I meant it. I knew that would build strength in him for next time. On our walk back out of the gym I heard my name called. I looked up into the bleachers and saw it was Eleanor, Alex’s mom. She was sitting with Alex, Nick, and Nick’s dad, Jeff. They waved for us to come up and sit with them. I felt envious that Alex and Nick were sitting up there, but we were about to leave. I swiped my hand across my neck symbolizing it was over for us. Eleanor’s nod back to me was like a big hug. She understood exactly what we were going through even though words were not exchanged between us.

Wil and I made it back to the car. I let the tears go silently, so as not to upset Wil, and started the car. As per usual, Wil took my phone out of my purse and clicked on the Amazon Music app, found a Luke Bryan song (right now he’s into the Spring Break album) and started singing with Luke.

It was hard to imagine Wil shrunken in hallway corner moments before as he belted out the lyrics to “Spring Break-Up.” It wasn’t that he’d already forgotten — he’d remember every detail. But to him that moment was over, and a new moment had begun.

I had more tears to let go first, and then I’d be able to move on. I guess we all have our own processing time.

Christie Taylor Uncategorized

Another Gear

I pulled up in the driveway at 7:45AM after coaching. Just as I was about to exit my car to go inside our home and check on Wil’s readiness for school, he ran outside and into the car!

He was fully dressed, complete with his hoodie, backpack and even socks (which sometimes prove challenging for him to put on) under his Crocs.

Ever since Wil chose to set his own alarm and get up and ready for school on his own a few weeks ago, he’s been gaining momentum by the day. At first I had to nudge him with a few things. Today, Wil whittled it down to zero nudges, with a bonus of him walking outside to meet me (rather than my coming in to meet him).

Last year he simply wasn’t ready for this next step. There were too many “stuck mornings.” But in true “Wil fashion,” when he’s ready the next step turns quickly into a leap. It’s like what was once stuck is now a well-oiled locomotive that quickly gains forward momentum.

I’ve learned over the years to take Wil’s milestones a day at a time. To not look too far ahead; and yet to keep trying and never give up. Because over and again his readiness builds ever so silently under the surface, and when it emerges for us all to see, it’s like BAM! Here we go!

Christie Taylor Down Syndrome

Submerged to Surfaced

Wil totally worked the system last night…

Over the summer, Wil greatly anticipated celebrating at his Connect friends’ senior grad parties. However, once at the event, he’d soon become overwhelmed with the activity and number of people and flee.

As many of the grads live in the country, I’d turn my back in conversation, only to find Wil already deep in a field (we live on acreage so he’s very familiar with going on what he calls “adventures”). I’ve chased him through a few fields over the years. Fortunately at one city home, he only rounded the backyard to the front porch. The two of us hung out there, Wil refusing to move, for about an hour.

Matt and I had talks with Wil before and after each grad party: It’s okay to feel overwhelmed. You just need to tell us. Just say you feel overwhelmed and want to go.

Wil nodded in agreement, but the next grad party he’d flee again. So we’d again reinforce Wil using his words. But again he’d flee.

So fast-forward from the summer to last night. Wil did not want to shower but he needed one. I prepared everything for him to reduce any further obstacles; I turned on the water, got his towel, pulled back the shower curtain, then left him to it.

Less than 5 minutes later he came marching up the stairs in his towel, but with hair completely dry.

“Wil,” I asked, “why didn’t you finish your shower?”

“I was overwhelmed.”

“Nice try,” I said stifling a laugh. “Now back downstairs and finish your shower.”

He went back downstairs but switched the shower to a bath. Oh the teenage rebellion 🙄😂

Christie Taylor Uncategorized

A Good Morning!

Wil set the alarm on his iPad last night for school (I showed him how after asking the twins if they had an old alarm clock Wil could use. Elizabeth said, “Mom, just use his iPad” 🙄).

On mornings I work, Katherine or Elizabeth typically wake Wil. He is very independent now, and it’s getting rarer for him to have sluggish mornings. Even if he does get stuck at times, he recovers much quicker.

As getting Wil out of bed does not require the patient encouragement it used to, I suggested he try getting himself up. He was all about it.

Just last year, setting his own alarm would not have been an option. He would have felt abandoned. He required our encouragement and our consistency to start his day right. If there was even one chink in the chain, it could throw the whole day off.

Many of Wil’s behaviors have been associated with challenges in communication. But with his desire for independence, his communication skills continue to expand.

He has the maturity now to see how communication gets him where he wants to go. His ability to ask for help when he needs it, and to more clearly identify and express his emotions, has helped him make forward strides. He still runs off when he is overwhelmed or frustrated, and likely will for some time. But again, he recovers more quickly than in times past. The more exposure he has with these situations, such as his recent choir experience I wrote about, the more confidence he’ll build.

This morning Wil woke to his alarm, dressed in the outfit he picked out the night before, ate breakfast, filled his water bottle and put it in his backpack. When I got home from work, he was rocking in the rocking chair watching Wild Kratts.

“Mom! I’m all dressed!” He said as he popped out of the rocking chair with both arms raised.

Whenever Wil hits a growth spurt like this my head spins in wonder. Only a year ago, this leap wasn’t possible. Whenever I force time on Wil, he forces back. But when the foundation is laid, and we progress the best way we know how, the time reveals itself.

Christie Taylor Uncategorized

Proudly Hail’d

At last Friday’s homecoming game, Wil and five choir companions formed a half circle in front of a microphone. The spectators, packing the stands, rose with hats and hands placed over hearts. The perfectly uniformed Manchester marching band spanned the field behind the semi-circle of singers and began their patriotic play. I held my breath.

The stands full of spectators would not challenge Wil’s nerve (he likes to be on stage!) It would be the volume of the band; he becomes un-nerved with loud, unpredictable noises such as the cymbals. During practice rounds, when the cymbals were up, Wil was out.

Kristi Campbell called me to form a plan (thank God for amazing paraprofessionals!). Though Wil has made vast progress in his tolerance for loud noises, the chance of him fleeing the situation still wasn’t 0%. We both wanted Wil to shine; of his own will. So Kristi said she’d stand nearby, but unobtrusively. I said I’d take a spot in the front row of the stands (I wanted a front seat anyway!).

When the band played and the choir sang, it was flawless. Jacob Mann conducted the band forward — as he did a conductor’s walk backward. Mr. Throneberry conducted the semi-cirlce of singers. Wil smiled and seriously recalled his lyrics — I even detected some of his high notes over the microphone.

It was beautiful, inspiring and right on note (Wil may have been a few beats behind in places, but that’s right on note too). I’m so very proud of Wil, and I couldn’t more proudly have hail’d the way our town comes together!

Christie Taylor Uncategorized

Unwrapped

Wil double-stepped down the broad concrete steps. He paused. Then he threw both arms back, hinged forward at the waist, and propelled himself over the last step. Mid-air he hollered, “Jump!”

He landed flat-footed and straight-legged.

Dang, when will he ever bend his knees?

“Mom, jump!” He yelled.

I exaggeratedly swung my left arm back, but kept my right elbow tucked in tight to protect a cup of lidded coffee. I jumped and landed softly with bent knees, then lifted my right arm in an effort to match the flow of my coffee. A deep brown dribble of coffee escaped the small hole in the lid and slid into the rim. I sipped it from the rim and raised my cup to Wil.

“Woohoo!” He yelled.

“Woohoo!” I yelled back.

“They are angels.” A woman said. I spun around. She sat on one of the ornate ice cream parlor chairs in front of the coffee shop. She was dressed in full-on Kelly green. I could barely discern where her shirt ended and her pants began.

“I’ve worked with many Down’s people. All angels.” She said.

I heard Elizabeth and Katherine, as clearly as if they were there, burst out in laughter. Then in my mind I heard Elizabeth say, “Does an angel throw your favorite comb down the heat vent?”

My mom-mind immediately targeted the woman’s lack of person-first language. But like Wil’s straight-legged landing, a correction would have stolen the meaning of the moment. The woman clearly cared about the person; she cared enough to reach out to a stranger and share the ultimate compliment.

So I smiled. I listened. Then Wil got antsy. I wished her a blessed day.

Still, her comment sat like a lead ball in the pit of my stomach. I needed to reach down deep, lift it up and roll it around until I could identify what the weight meant to me.

Then I saw it…she had put individuals with Down syndrome in a box. It was a beautiful white-feathered box placed on the very top shelf, with the utmost care and kindness; but it was still a box.

I realized I had put myself in a box too; labeled: to educate or not to educate. It’s a grown habit that becomes ingrained over the years of hearing stereotypes both well-meaning and not. Of watching your child reach milestones in micro-moments, so even the slightest bend in the knee does not go undetected.

But sometimes moments are meant to be moments. Moments to take a leap and land just the way you are. Moments to accept a stranger’s kindness by her intent rather than her words. Moments to unravel what sits heavy with you, unwrap it and let it go.

If there was an angel that day, it was one who whispered the vision of Katherine and Elizabeth in my mind; filled with laughter and words to match the moment and burst open the box.

Christie Taylor Uncategorized

A Dose of Happy

After coaching this AM, I pulled into our attached garage.

Wil, hearing the garage door lift, opened the side door from our house into the garage. He stood there, with his short hair a fuzzy mess, navy blue donut pj bottoms, and one of his many Buddy Walk t-shirts.

I responsively smiled at him through my car window. I shifted the car to park, lifted my hands and raised the roof. He raised the roof back. I stirred the pot, and he stirred it back. I rocked my shoulders, he rocked his and added a hip twist. I hadn’t even gotten out of my car, it was barely 7:30AM, and our day was already groovin’.


I wish I could bottle this stuff up and spread it around. Our kids w Ds bring just the right dose of joy this world so desperately needs right now.

Our kids aren’t happy all the time, but wow does Wil know how to bring out happiness in others.

Christie Taylor Uncategorized

Word Up!

When Wil tries to figure something out, he has a back-and-forth conversation with himself: “Wear the grey shirt? Yes, yes, the grey shirt.” This will go on for his hat and shorts, too; and with most any task that requires decision-making.

He’s been having these conversations for about 5 years now. At first, I was concerned. He didn’t talk to himself, then all of a sudden he did — all the time. I worried these conversations developed because his peer group didn’t speak at his speed, and this was a coping mechanism to keep himself company. I did, however, enjoy hearing his thoughts, as he wasn’t always able to communicate them to me. And when he got stuck on something, I knew why.

Raising a child with a disability, you grow accustomed to digging into behaviors. Behavior is communication, but when your child isn’t capable of communicating, you put on your Sherlock cap and get to work. At first it’s something you figure out, then it becomes part of your everyday lifestyle. You don’t even realize you are doing it.

If Katherine or Elizabeth started talking to themselves, I wouldn’t think anything of it. I talk to myself out loud sometimes. It helps to clarify thoughts. And come to find out, that’s exactly what Wil was doing. But I didn’t see it because I’m always looking deeper than surface level, and not even realizing it. Wil doesn’t have the social filter that Katherine Elizabeth and I do in this area. To him, he’s simply making decisions out loud with no concern about who is listening.

Looking further into this behavior, I discovered it’s very common in people with Down syndrome, and can carry into adulthood. Now that Wil has been doing it for some time, I don’t even notice it as different anymore — because it’s not.

Today was a fun leap in Wil’s personal conversation. When he has his hands full getting out of the car, he’ll say, “Mom, I can’t do it, I don’t have enough hands!” (Don’t I know the feeling!). I’ll reply: “Sure you can!” And give him a few tips, such as tucking things under his arms, or making two trips — but who does that? Then I leave him to it. Some days he gets frustrated and sits in the car, and some days he takes my suggestions right away. Either way, he figures it out.

Today, Wil tried to get out of the car with a stack of CDs and his water bottle. Rather than addressing me this time, he said to himself: “I can’t do it, I don’t have enough hands!” Then he replied to himself, “Sure you can!”

He grabbed his CDs in a stack, opened the car door with his other hand, then got his water bottle, and bumped the door shut with his hip.

Now you’re talking, Wil! 😀

Christie Taylor Uncategorized

Mixed Medley

I dropped Wil off on the second morning of his first all-day camp.

He talked about camp for weeks; water balloon tosses, scavenger hunts, a trip to the beach – and parent-free. There were no tears at drop-off; Wil and I were both ready for this leap in independence.

This summer has been the Mom & Wil show. As 17-year-olds, Katherine and Elizabeth have taken trips, worked, and enjoyed the freedom of driving teenagers. As such, this summer has been a sneak-peek into life with Wil when Katherine and Elizabeth are away at college. As close as Wil and I are, we both require a level of time on our own. I knew it was time to find a way to spread our wings — but how and where?

This first all-day camp experience would be an ideal situation for Wil. It is where he takes taekwondo, so he is familiar with the staff and the venue. Master and his staff are very understanding of Wil’s abilities. They know when to push him, and when to give him space. Wil would enjoy time with typically developing peers and two of his taekwondo buddies who also have Down syndrome.

Even so, it would be a long day for Wil. He was focused on the fun; I was focused on preparing him for a full day.

“Wil, you know camp is a full day; the same as a school day. You’ve got to hold it together.”

“Ok, mom.”

“You are going to have a lot of fun. But you may get tired. And that’s ok. Just tell someone. Find Master, or one of the helpers in a red shirt. Tell them you need a break. Use your words. No plopping or running off. Got it?”

“Ok, mom. Camp! Yay, woohoo!”

I played my preparatory words on repeat in the weeks leading up to camp. It may seem redundant, but I knew from experience that he’d fly in blazing, only to find that it truly was a long day. He’d then fizzle into an exhausted plop on the floor, or flee overwhelmed out the door. His words, or words by others spoken to him, would be lost. Only time and space would unravel him.

Wil is fully capable of communicating that he needs a break. He just needs to be prepared to use his words before overwhelm or exhaustion overtake him. Therefore, we play things on repeat around here.

Wil focuses much of his life on the fun side, and I’m on a joy-ride with him. The flip side of that is anticipation, preparation, and words on repeat — and I’m on a replay-loop of constant-ness with him. Sometimes I need to step out of the loop and take time for myself, while Wil needs to take a step away from me, and forward into independence.

On the drive to camp this morning, Wil sang his own impressive a cappella medley of Luke Bryan songs — I thought dang! Even Luke would be taking notes on what Wil put together. But then again, Wil knows better than most how a mixed medley works.