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

Just Make Him Do It

One of the most common things I hear (and what many of my friends who have children w disabilities hear) is, “well, just make him do it.”

I literally feel a huge distance grow between us with this seeming logic. And yet, it’s a very difficult distance to close as there is no logical explanation. It’s a “living it” thing.

We parents, special education teachers, para educators, and caregivers are constantly on the alert for “triggers” that cause our kids to dig in their heels.

Some of these triggers are constant, and we have created ways to work with them.

Some of these triggers are only known to our kids and appear spontaneously to us. And when triggered, there is no “make him do it.”

When Wil refused to get on a connecting flight, how I wish I could give the “make him do it-ers” a chance to use their logic on Wil that day. That would have been a helluva education.

Heck, I don’t know even know it all and I’ve been raising Wil for over 15 years, not to mention knowing many other children with Down syndrome quite well. And each and every kid defies this logic.

So next time you want to think it’s logical, and fits some kind of mold, I challenge you to spend a day with Wil, his friends, or in a life skills room, and let me know how that logic goes for you.

Christie Taylor Down Syndrome

You Go Girl!

At the airport yesterday, Wil was struggling a bit with some young children crying.

As a Starbucks was nearby, I asked Elizabeth to walk him over there while I stayed with our carry-on luggage (as Katherine was in another shop).

Wil was reluctant at Starbucks too, so Elizabeth walked him back to sit with me. She then walked back to Starbucks to get herself something to drink. A woman walked up to Elizabeth while she waited in line for her drink. The woman said she observed Elizabeth with her brother, and expressed her admiration at Elizabeth’s mature patience and how she talked to Wil. Then the woman said, God Bless, and walked away.

Elizabeth was surprised, yet pleased, by this. She was just being a sister to Wil as she always is (and Katherine has this same mature patience with Wil, as well), and didn’t see her actions as anything different than normal behavior.

In Elizabeth’s everyday life, she lifted the spirits of another, and she was uplifted in return.

I’m proud of Elizabeth (always), and also proud of the woman who had the courage to step up and acknowledge Elizabeth.

Katherine, Elizabeth, Wil

Christie Taylor Uncategorized

Sunday Live-Stream

I don’t listen to special needs podcasts.

It’s not that I don’t enjoy them, or learn from them, or feel a connection with them. I do. I have a few of my favorites saved in my library for quick access when I need extra help. But mostly, I enjoy the running podcast of my own life.

Like when Wil goes to Challenger baseball, I look forward to it just as much as he does. It’s as much of a supportive environment for him as it is for me.

There is both structure and freedom in the Challenger games: 3 innings, player placement in the outfield, a batting line-up, and everyone makes it to home plate. But beyond that, and sometimes within that, anything goes. It’s really the perfect parallel to raising a child with disabilities. The parents, coaches and players get it, because they live it. Every day.

Tim stepped up to bat, and Coach H. announced it was Tim’s birthday. Everyone cheered. Coach H. joked that his son, who has autism and scripts (repeats sayings), only told him 55 times that morning. After Tim hit the ball, Tim’s mom quietly told Coach H. that she’s not sure where his son heard it was Tim’s birthday; it’s really in January. But who couldn’t use an extra cheer?

Sandi was next up to bat. She hit the ball and ran to 1st base. But she didn’t stop there. Sandi ran on to join her friend on 2nd base to give him a hug. There Sandi stayed; two players on 2nd base and no one on 1st base.

James enjoys music; the same music, over and over. James’ dad’s cell phone is on a near constant repeat of animated show tunes in his pocket. But James’ dad instilled a rule: music while in the outfield, but no music while waiting to bat.

“I swear I can’t listen to that song one more time!” James’ dad said to me. James, in turn, scripted about the music the entire time he waited to bat. So, by the time James and his dad went back to the outfield, his dad was just as relieved as his son was to play music again!

I jokingly said to James’ dad, “No music on the pitching mound.” He replied, “Oh, there is going to be music on the pitching mound!”

Just before Challenger baseball, Wil, with his strong left-handed throw, tossed Elizabeth’s book into his pool. He wasn’t mad it her. Nothing precipitated his actions. He saw her book sitting on the back-porch table, and his pool was in perfect throwing distance.

He lost his iPad privileges, which means no Luke Bryan. So, he grabbed his Luke Bryan CDs, which I also said no to.

“DVD’s mom?” Wil asked.

“No,” I replied.

At the Challenger baseball game, I shared this incident with my friend, Eleanor. Her son also has Down syndrome and is Wil’s age. I knew she would understand, and sure enough, she laughed and said her son had committed similar acts with his sister’s possessions for no apparent reason. We shared other stories and how our sons always tell the truth, or remain silent, about such incidents. We’ve never heard either tell a lie. Then we watched her son crack an impressive grounder and take on the bases.

Entertainment, sports, connection, support, humor and education; no streaming required, all on a Sunday afternoon.

Christie Taylor Uncategorized

CREATING SPACE

“Mom, I saw Ashley in gym today!”

Wil did not share this fact after school. Nor at the dinner table.

Wil was lying on the couch, shortly before bedtime, watching a Netflix show with Elizabeth and me. He popped up in the middle of a scene— that had nothing to do with gym class, or long-time friends — and made his declaration.

When Wil was younger — and his friends, cousins and sisters were younger — the main goal was play. Though some kids ran and talked faster than Wil, the running and talking didn’t last long. They were all about the play, and that’s what they did.

But now, the play has transitioned to conversations. And these conversations move fast and take lots of tangents. And Wil, though he speaks quite well, simply can’t keep pace with most teenagers and adults when it comes to conversation. Thus activities in gym, and seeing long-time friends like Ashley, are highlights of Wil’s day.

I’ve recently noticed Wil’s increasing silence at large gatherings such as weddings and holiday dinners. Ironically, Wil’s conversational skills have increased, and yet, he still cannot keep up with the pace of group conversation. He joins in where he can; and for Wil, that is in laughter. Unless Wil is addressed or given the space to talk, he sits quietly, staring at his plate, until laughter spontaneously and contagiously catches everyone at the table, and he heartily joins in.

Fortunately most large events come with dancing and games, and this is where Wil knows exactly how to make space for himself. At my nephew’s wedding, he literally did just that. Wil created his own space on the dance floor, got down with his own moves, and his energy was so contagious that no other dancer could resist joining him. He was again at play, everyone around him was about the play, and that’s exactly what they did.

When space isn’t created for Wil, and he is not able to create space for himself, it is when the night grows quiet that he thinks on his day and processes events. It is his time to filter through images without all the tangents and interruptions. And though some of his declarations may seem out of the blue to us, he is creating that space for himself. And as his mom, I can’t help but cheer when he decides to take the floor!

Christie Taylor Uncategorized

Down-right!

I’ve heard Down syndrome called Up syndrome. In the beginning, this upend in terminology enabled me to rise above the mess of emotions I was entangled in to better sort them out.

Then an interesting thing happened…over time I became increasingly grounded in my daily life; more than I had been in a long time. Wil was the gentle hand who guided me “Down” to my roots; to the person I was always created to be.

His ability to do this is not intentional. It is, simply and powerfully, because Wil unerringly stays true to the person he was always created to be.

I no longer think of “Down” in a negative sense. It’s a place to ground ourselves, and in so doing find we are moving in just the right direction, at the right time, and in the place we were meant to be.

Christie Taylor Uncategorized

The Game is Afoot!

When Wil was born, why a 3rd copy of the 21st chromosome occurs was — and still is — a scientific mystery.

When I struggled to gain acceptance after Wil’s diagnosis, I sought out a support group. My new support group friends hugged me and said I would know a great joy, even though I couldn’t see it now. A deeper mystery.

When Wil’s physical therapist said he had low muscle tone but would most definitely walk, I asked when. She answered that was up to Wil. An enduring mystery.

We live in an Information Age. And yet, I am thankful to know mystery is alive and well. Without it, I would have got caught up in how Trisomy 21 happens, rather than the more important fact of how my son will grow and thrive with Trisomy 21.

I’m thankful — and now understand why — my fellow support group friends could not explain the great joy I would soon come to know. It is an answer learned only by living; and extends beyond words. I now make quick friends with other Trisomy 21 parents as we share in this knowing that we have lived to learn.

And if I knew, or had a baseline idea, of when Wil would walk, I would have overlooked any millimeter of progress I then so desperately sought. Every success was a surprise gift, no matter how seemingly small.

Yes, mystery still exists! Just ask anyone who loves someone with a disability.

Our world is one of highly anticipated outcomes, interspersed with daily surprises — all the makings of a great mystery. And that’s no sh*t Sherlock!

Christie Taylor Uncategorized

A Moment in Time: Surprise gifts

Wil and I went to pick up pizza in town. As we exited the pizzeria, we saw Will D., Wil’s friend from school.

We enjoyed a quick chat, then as Wil and I headed back to our car, Wil turned around and called out to Will D., “See you tomorrow!”

I’ve never heard my Wil say that when meeting school friends in town. And yet, there it was, thrown out there just like that.

When the common never is, it’s like your life is dotted with little surprise gifts. 🎁

Christie Taylor Uncategorized

Showing Up

Friday morning Wil refused to go to school. Elizabeth called me at work to let me know what was happening. Wil had ridden his bike down the driveway and wouldn’t budge. Elizabeth put me on speaker on her phone so I could talk to Wil. Wil threw her phone in the snow.

I called the school to let them know the kids would be tardy. I then called Wil’s paraprofessional to let her know. After trying a few tactics it was clear I needed to come home and the kids would then be very late. I was just on the road when Elizabeth called back.

A friend they drive to school called her mom to let her know she was going to be late to school due to Wil being planted on his bike in the driveway. Her mom hopped in her car, drove up to Wil on his bike and said, “Hey Wil, want a ride to school?”

“Sure!” He said and got in her car just like that after a mornings long standoff!

I was so relieved they all made it to school and Wil turned his day around (with an added bribe of McDonalds). It wasn’t until later in the day that a coworker brought to my attention that it was funny Wil threw the phone in the snow so as not to talk to me.

Katherine and Elizabeth deserve a medal because this is their normal and they work hard to navigate Wil’s tough times. And wow, there are amazing people who show up just when you need them; and who remind you to laugh! ❤️