Christie Taylor Uncategorized

Age is Just All Numbers

Wil and I decorated the Christmas tree. It’s the first time we’ve done it just the two of us.

Usually the twins are here so he’ll hang a few ornaments, but then move on to singing or other activities around us.

As Wil was home sick, and we needed low-key activities to stave off boredom, I suggested we decorate the tree. The tree was up, we were just waiting for the twins to come home this weekend. But I said let’s do it.

That’s all I needed to say. Wil got the box of ornaments from the basement and we got to work.

As it was just the two of us decorating, he put up more ornaments than usual. He picked one area of the tree and put all the ornaments there. Fine motor skills are hard for him (such as pinching his fingers together), so when he got frustrated putting the ornament loops over branches, he just shoved the ornaments into the tree.

“Wil, take a break when you need to. I know this gets tiring for you. But watch this, if you hold it like this it’s easier. And feel free to spread out.”

He did take a brief break. Then he tried looping a few more ornaments but stuck to the same spot.

All of his ornaments in one spot, many shoved in, was so darn cute — like a younger child would do. But also mixed with the teenage defiance of “you can tell me what to do but I’ll do it my way.”

Tree decorated, we cleaned up pieces of sparkle and felt that had fallen off of older handmade ornaments.

Wil picked up a red piece of felt, held it under his nose and said, “Look Mom, a mustache!”

Wil is an expert at spontaneous joy. As frustrated as he gets at things that are hard for him, he always has a silly something up his sleeve. It’s these moments that have changed my life. How otherwise mundane tasks can be incredibly joyful in the simplest of ways.

Which is one of the many reasons I don’t like the question: “What mental age is he?”

Ummm, he’s 5, 10, 17, 25 all in one moment. What mental age are you?

Some of us, like Wil, have all our ages all bunched up together in one spot.

Sometimes we need some guidance to spread out, and other times we know exactly how to make the best of right where we are. ❤️

Christie Taylor Uncategorized

Drum Roll Please, Common Ground at Play!

When Wil entered 4th grade, the gap in his abilities relative to his typically-developing peers took a large leap. Wil’s classmates talked faster than he did and played at a higher intensity. Even so, Wil and his friends, whom he had been in school with since kindergarten, formed a strong bond over the years. Whenever I witnessed Wil and his friends on the playground together, no one was left out. He and his friends created or altered games so they could all join in together. There was no shortage of singing, dancing and laughing.

Wil played recreational soccer with his peers through 3rd grade, but it was clear that would be his last year. Though his coach and teammates fully included and encouraged him, the faster pace simply wasn’t for him. The next season Wil went to  TOPSoccer, designed for people with disabilities. He played with TOPSoccer for the next 4 years. 

Now in 9th grade, Wil is happily settled into the familiar schedule of school with his friends. The friends are just as close as ever, but the reality is they are all teenagers now. Outside of school, Wil’s friends are balancing rigorous homework with multiple extracurricular activities, as are his sisters. Play time together is caught in brief snippets of time. 

Isolation is a reality for many people with disabilities as they grow older. The gap expands and the opportunities shrink. As parents, siblings and friends of our loved ones with disabilities, we constantly seek and create opportunities for common ground. It is in the creation of new pathways, that our bonds grow even stronger. 

When Wil was younger, he had a small drum set. Though Wil is a joyous bundle of energy most of the time, at times he would get overwhelmed with friends and run off. During one such time, Wil’s friend Lila spied his drum set, and they played together on that for hours. From then on, if Wil became overwhelmed when friends were over, they’d all circle back to the drum set. 

I just put up a trampoline for Wil last week. My intention was for the trampoline to be his teenage version of the drum set (but quieter). It’s both a fun activity for Wil to enjoy on his own, as well as with his friends and family. 

Last night Elizabeth and Wil, now equal in height, chased each other around the trampoline. Laughing, jumping and bouncing, they circled the perimeter over and over. 

Over the course of these near 15 years of Wil’s life, I’ve uncovered a few core truths:

  • Connection is not guaranteed with full inclusion, but strong bonds are rarely formed without it. 
  • Preparation alleviates fear of the unknown, but the unknown will present itself without it.
  • Creation is necessary to move forward, but circling back also leads us where we want to go.  
  • And no matter how many hours you’ve heard a drum roll, when common ground is at play, you’ll want to shout “drum roll, please!” 
Christie Taylor Down Syndrome

Growing Pains

Wil went to the doctor for his well visit Friday afternoon. He’s now 5’4” and 136 pounds. Wil was a champion through all of the doctor’s tests and questions. In previous appointments, he would act silly if he didn’t understand a test, or glance at me when the doctor asked him a question. On this day he kept eye contact with the doctor, followed her cues with each test, and answered every one of her questions. 

Katherine recently secured a job as a server. She asked Wil to quiz her on the menu. It was a natural choice for her as one of Wil’s favorite subjects is food (he reads take-out menus for fun). Wil held the menu up, ordered a meal, and Katherine told him what sides or dressings it came with. Wil had so much fun with this task that he pointed out all of the items to me too!

Wil is no longer a “little guy.” Each forward step of independence is incredibly gratifying to see. But like any teenager, he also asserts his independence when he doesn’t want to do something. Wil has summer speech therapy twice a week, and occupational therapy (OT) once a week. He enjoys going so I was surprised when he resisted one morning. I tried but was unable to deduct the reasoning behind it. Thankfully Elizabeth was home and I needed to take Katherine to work first. So I told Wil I was leaving for speech and OT without him and was very sorry he made a decision to miss it. Katherine and I left. We hadn’t made it more than one minute down the road when my cell phone rang. 

“Hi Mom,” Elizabeth said, “Wil has something he wants to say to you.” Wil got on the phone and said, “Hi Mom. I want to go to speech and OT.”

Now knowing the consequences, Wil is unlikely to refuse again. But to reach that point, it can take such measures that require more than just me. I could write an entire book on how innately understanding Katherine and Elizabeth are when it comes to motivating and supporting Wil. 

There have been times when Katherine, Elizabeth and I have had to physically move Wil when he won’t leave a situation. It’s happened at the airport, when for a reason only known to him, he refused to board a connecting flight. It’s as emotionally trying as it is physically — for all of us. 

On one recent occasion, Wil didn’t want to leave my parents’ house. After much reasoning on all of our parts — even bribing with a Coke — he sat unmoving on the floor. I knew once he left my parents’ house he would unwind from whatever was keeping him stuck (once Wil is out of the physical location he’s stuck in, it’s like an emotional release too). 

When it was clear he wasn’t going to move, I came behind him, reached under his armpits and clasped my hands in front of his chest. Katherine and Elizabeth lifted him by the legs. He cried and fought us. It was awful. When we got too tired and set him down on the ground to catch our breath, I bent down to talk to him quietly and Katherine hugged him. When we managed to get him in the car, it was like a switch went off in his head. He was completely fine. However, the switch doesn’t flip that easily for Katherine, Elizabeth and myself. I sat in the car trying to hide the tears streaming down my face so as not to upset him again.  

On our drive home, Wil belted out the words to a Luke Bryan song, and Katherine and Elizabeth rolled their eyes as they usually do. I took in a deep breath and took in the equilibrium of the moment. 

Wil’s timeline is different from our timeline. Finding an equilibrium in that is one of my greatest challenges as his parent. I suppose that is why there is such a thing as growing pains. There is no growth without them; and yet the growth is always worth it. 

Christie Taylor Uncategorized

Once Upon a Hat

On Friday morning, Wil sat on his bedroom floor rifling through his bin of hats. He couldn’t decide which one.

“Well, no hat then!” Wil announced to himself. 

“Do you need some help, Wil?” I asked.

“No.” I sat down next to him and laid his hats on the floor. He turned them all down.  We had to leave for school in 10 minutes. 

Wil had a Manchester shirt on so my best guess was he wanted a Manchester hat too. I presented his Manchester hats to him but he turned them all down. I convinced him to get off the floor, even without a hat, which was a good sign. 

A few months ago when Wil couldn’t decide on a hat, he stayed on the floor. I told him I was taking his sisters to school so they wouldn’t be late and I’d be back to get him. When I returned, he was seated on the porch step with a hat and backpack on. I was proud of him for turning his day around. 

On this Friday morning, however, when Wil stood up he fled the house without a hat or backpack. Katherine dashed after him. I grabbed Wil’s Manchester hats, his backpack, and flew out the door behind them.

I found Katherine standing in the dog kennel which is attached to the side of our garage. Wil was attempting to climb through the dog door which would have been hilarious to all of us, if we hadn’t been in a time crunch. 

“Silly Wil,” I said. “Woody is going to be jealous of you using his door. Come on, you don’t want to be late to see Ms. Campbell, do you?”

“Kristi Campbell!” Wil jumped out of the dog door and exited the kennel as he said his paraprofessional’s name. Then he stood unmoving in the driveway ­— two steps forward and one un-moving step is still a step forward in our book.

I walked behind him, put my hands on his waist and said, “Chugga-chugga choo-choo!” As I pushed him forward, he leaned back in resistance, yet kept putting one foot in front of the other. When we reached the car, Katherine opened his door but he stood firm by it. 

“All aboard,” I said. I bent his head down and kind of hoisted him into the car. He laid on his stomach with his legs hanging out. At this point his resistance was becoming a game. I was in part thankful for that, as I knew he was pulling out of his funk. But I was also running out of patience as he was in jeopardy of making his sisters late for school, which wasn’t fair to them. 

Elizabeth was in the back seat with Wil and talked him into sitting up straight and putting his backpack and seatbelt on. 

“Hey, Wil,” Elizabeth said looking at the Manchester hats I threw in the car, “that Manchester visor is mine.”

“No, my visor,” Wil said. They bantered back and forth. I knew what Elizabeth was doing. Sure enough, Wil chose the Manchester visor.

I reached my arm over the seat and splayed my hand. “Give me a turkey, Wil. You turned it around! Now you are going to have a great day.” He fist bumped my open palm. “And how about those sisters of yours? They are awesome.”

“They are bratties.” Wil said and laughed.

“No, you’re bratty,” Elizabeth said and playfully nudged Wil. (Typical sibling banter is as refreshing as it gets when life isn’t feeling so typical.)

By some miracle, we all made it to the school with 90 seconds to spare and in good spirits.

Sometimes it’s the simplest things that throw us off track, the simplest things that place us back on track, and the simplest things that we appreciate most. 

Christie Taylor Down Syndrome

Girl Time

Wil sat down on the bench. I sat next to him and watched a droplet of sweat slip down the side of his forehead. It was 88 degrees and he’d already been walking for 90 minutes. Katherine was to our left crouched in front of a hyena. She snapped a few close-up photos. The hyena was belly up, legs splayed, mouth open in what I swear was a smile, pink tongue hanging to the side, with the cool earth on his back and the hint of a breeze ruffling his coat; just like our pet Labrador on a hot summer day. Elizabeth and my dad were to our right watching an anteater splash himself in a pond. 

I knew there would be a point when Wil abruptly declared himself done with the zoo. I was impressed, though, that he’d made it this far. Earlier that morning, Wil jumped out of bed, stripped off his pajamas, took his still damp swimsuit off the dry rack, and pulled it on as fast as you can pull on a damp swimsuit. He jumped in my parent’s pool and played for 2 hours forgetting all about breakfast, until I reminded him it was time to eat and head to the zoo.

Wil and I sat together on the bench talking; I knew the only place he’d go from there was the exit door. After about 10 minutes, Katherine, Elizabeth and my dad joined us at the bench. Katherine and Elizabeth wanted to stay for the safari show which was in 2 hours. We came up with a plan: my dad would take Wil out to eat while Katherine, Elizabeth and I completed a tour of the zoo and watched the safari show. After that, we’d meet my dad and Wil in the parking lot and head back to my parent’s condo.

It’s a balance raising typically-developing children and a child with Down syndrome, but not an equal one. If my dad wasn’t at the zoo that day, then Katherine, Elizabeth and I would have left after we coaxed Wil up from the bench. Or, I would have sat with Wil while Katherine and Elizabeth continued the zoo tour on their own, because when Wil is ready to go, there is little chance of convincing him otherwise. Katherine and Elizabeth are deeply patient, compassionate and understanding individuals for that fact. They haven’t been outwardly taught to be that way; it’s part of their daily lives and ingrained in who they are. 

After my dad and Wil headed off to the car, Katherine, Elizabeth and I visited more animals, took pictures, browsed the gift shop, and watched the safari show — all on our own time, at our own pace, in our own way, just us girls. As we sat at a picnic table and sipped $4.00 lemonade under the shade of the Naples Zoo banyan tree, I took notice of the way the roots, stump and branches articulately wove together over time to create this magnificent tree. 

I sent a silent nod of reverence to the banyan tree, as we share the knowledge that balance is not always created in symmetry; that intertwining segments woven together over time form a foundation well-grounded. I looked my girls, and thought of sharing this, but they are teenagers and would have rolled their eyes. Instead I told them how proud I was of them, how thankful I was for this time together, and that one day they would also know their deep magnificence.