Christie Taylor Uncategorized

I Wonder, Wonder, Wonder

Wil talks all the time. He talks to me, he talks to friends, he talks to himself. I wonder at the time, listening to him today, how one hesitant word was cause to drop everything and celebrate. His verbalization today was once a distant, fuzzy dream. Like reaching for a cloud that my hands couldn’t quite grasp.

Wil does have a tendancy to stutter when he’s excited — his emotions overtake his ability to choose his words and his words get jumbled up. I get it; even the most poetic words could never fully describe an emotion.

When Wil sings, however, there is no stuttering. His emotions, paired with the words, are set free in song.

When Wil talks to himself, there is no hesitation in his words either.

“Lunch?” He’ll ask himself.

“Yeah, yeah, lunch.” Is his reply.

“What do you want? Hot dogs?” He prods.

“Mmm, hot dogs? Yeah, hot dogs.” He answers himself.

“With mustard and peppers. And relish. Mom! Lunch!”

When his self-talk first emerged, I worried. I remember when I first heard it. He was sitting on the floor of his bedroom in front of his closet. He had a back-and-forth conversation with himself on what toys to play with. It was also at this time that the gap in abilities with his peers was becoming very clear. So this timing had me wondering if he had created an imaginary friend because he felt lonely.

Wil has had the same peer group since kindergarten and they exemplify what inclusion is. Even so, I wondered how this gap in abilities that I saw expanding was affecting Wil emotionally. He didn’t act sad about it. He still talked about his friends in the same way. But there was this self-talk emerging and I didn’t know where it was coming from – other than Wil, of course.

I googled “self-talk Down syndrome.” I found this phenomenon is very common amongst individuals with Down syndrome. It’s simply a way to process thoughts. As Wil grew older and we spent more time with teens in our Down syndrome support group, I realized how typical this is. Now it’s just what Wil does. It’s just what is.

As Wil grows on the outside, I grow on the inside. The stigma of the outside disappears when I find understanding on the inside. I frequently look back and wonder at what I once wondered at. It’s an emotion beyond words.

<younger Wil and his longtime friend, Lila>

Christie Taylor Uncategorized

Pinnacles

This blog isn’t about Wil, it’s about me in relation to Wil.

And I guess all my blogs are really about that. Because I had no clue how to raise a child with Down syndrome. And I don’t think many of us do. There are parenting books, but how many of your typically-developing kids fit those molds? Throw in an extra chromosome, with inclusion being a relatively new concept, and any road map you think you have dissipates into a mirage.

Most of my learning, rather than from books, can be likened to sitting around a campfire passing the peace pipe, except we parents are sitting in lobbies of therapy centers, or school hallways sharing stories of how to navigate governmental services, available therapies, what worked for our kids, what didn’t, and most commonly what worked for our kids one day but then didn’t the next. We all laugh at that last fact, as any sure plans have the staying power of a puff on the peace pipe.

But what’s solid is the connections I have made with those who support me on this path. What’s solid is the work I have put in to the best of my ability. What’s solid are the tear stains on my cheeks from so many hard, frustrating times when nothing seemed to work and days that never seemed would end; what’s solid are triumphs that emerged. By triumph I don’t mean always grand — though they felt that way. A triumph during one period was that Wil actually climbed out from under the table for a few minutes. When you feel directionless, and have no idea which way is up, you are willing to grab on to any sliver of light and expand it any way you can. A silver lining, no matter how slim, is always celebrated when it appears.

When I brought Wil to summer camp it was like standing at the top of a mountain and sticking a flag firmly in the ground. I looked around, and though there were more mountains around us, we had summited this one. It was not just about the day, it was a pinnacle moment; a symbol of the journey thus far.

I know my part in that, I know Wil’s part in that, and I know the friends’ I leaned on part of that. I know, deep down in my heart the worth of that.

And in one shared sentence to me about Wil going to camp the flag was lowered; the worth diminished. Of everything I did to get Wil there, of everything Wil did, of the friends and connections that were part of that journey, the sentence ignored that. The sentence was also more than just words, just like Wil going to camp was more than just camp. The sentence was a pinnacle; a symbol of the journey thus far. Like if Wil was treated as a typical kid, he would have been at that spot anyway. Not one mention of the journey. Not one word of respect for the journey. Not one word of honor for what it took to get there.

Wil is not a typically-developing kid nor will he ever be. Wil has Down syndrome. He has 47 chromosomes, we have 46. That’s not going to change. It is not a negative thing, it is not to be ignored like it doesnt exist. It’s not to be fixed, it’s not to be cured. Wil needs extra help, he needs extra time, and he needs more than I was educated to give him which is why I’ve surrounded myself with very proactive parents.

We are all truly better for knowing, understanding and honoring our friends with disabilities. I know that deep in my heart. I stand firmly on that, and I honor that. One sentence can not change that, but as I said it was a pinnacle sentence so it gave me loads of clarity.

I’ve been carrying the extra baggage of the flag-lowering type of thinking for much too long. Believing time will change it. But you can’t change what you don’t want to, and the only person you can change is you.

I’m handing the baggage back. I’m grateful for the strength of carrying it gave me. It pushed me deeper into what I respect and honor. But it’s not mine to carry.

At this realization I was hard on myself for taking that long to realize how heavy the baggage of another’s is that was not mine to carry. I mean, I could have set it down at any time.

But if raising Wil has taught me anything (and this journey has taught me a lot!), I’ve learned that it doesn’t matter how long it takes to reach certain destinations; what matters is that you do the best you know now, and keep doing that until you get where you want to go. And that extra baggage — that’s up to the owner. It always was.

Now excuse me while I step out much more lightly and enjoy the view from this incredible journey I never knew I wanted, and now can’t imagine life without!

Christie Taylor Uncategorized

Tree Wil and Glitter Christie

The past fall, I struggled with the thought of never truly being an empty nester. My thoughts were a twisted, tangled jumble of yarn – strands of prickly burlap wound tight around strands of brilliant, transparent glitter.

The brilliant strands of glitter represent Wil’s near constant song. Nearly every event calls for a song — when he’s playing, in the shower, in the car, or outside for a walk; anything and everything is inspiration for music. The brilliant strands of glitter also represent Wil’s ever-creative and impromptu silliness. Just yesterday Wil grabbed a branch, held it up and said, “Look Mom! I’m Tree Wil.” And we both broke up into giggles. I can count thousands of such impromptu acts over the years. There is nothing too small for Wil to make big of. He could make a brown paper bag fun—and has, many times! The brilliant strands of glitter also represent Wil’s ever-expanding growth, independence and self-advocacy. Each year he reveals to us more and more of what his true abilities are.

And yet, even at Wil’s highest levels of self-advocacy and independence, he will always be vulnerable. He will always need some level of care beyond his own. When thoughts of Wil’s vulnerability overwhelm me, the prickly strands of burlap sprout and wrap themselves tightly around the brilliant glittery strands, shrouding their luminescence and razzle-dazzle, weighing them down like a heavy, clingy, weedy vine.

It is the burlap strands I’m stuck in when I envy my empty-nesting friends their freedoms. Don’t get me wrong, I am happy for them – I thrill at listening to their planned or dreamed of future adventures. It is the sense of freedom that lay before them that I envy. I envy that for them this is the natural order of things – that this type of freedom is expected.

For our family, a lot more is to be considered — Wil’s care must always be considered. He can’t be left alone for extended periods so we are always aligning schedules. Vacations must be made that suit his needs. If a situation is loud and very crowded, Wil may refuse to go in. If Matt and I chose to go out on our own, who would care for Wil while we were gone?

I also felt the same when people talked about not wanting to live past a certain age. One night after a sporting event, Matt and I went out to dinner with only 2 friends that I knew and the rest were acquaintences of Matt’s. We were all spread out down a long, rectangular table. A man about my age and his girlfriend were seated directly across from me. During the course of conversation the man said, “Well, I don’t want to live past 80.” I then asked him why that was so. His reasoning, as you would expect, concerned his own abilities. I then asked him, “What if you had a child with a disability that relied on you? Would that change your mind?” He stared blankly at me.

We only see what we know. But there is so much more to see than what we know.

This past fall, I was seeing things just as that man across the dinner table. A tightly woven, blocked perspective.

If my mind stays stuck on certain freedoms that I don’t have, how will I open my mind to see all the freedoms that I do have? And all the freedoms available that I don’t yet see.

Wil continues to grow and expand in his maturity because he sees beyond a finish line to growth that many of us draw for ourselves. Wil’s creativity and spontaneity knows no bounds for the same reason. At one point, we stopped seeing branches that could be created to form Tree Wil. In fact, now many of us walk past branches that we don’t see at all.

There are so many things that I do not see! And Wil reveals that to me every day, many times a day. So why can I not unravel the heavy, clingy prickly parts of my own life and instead view them in a new light? Why not let the brilliant, glittery strands elevate my perspective?

Why, because my life may look different than another’s, can I not shine light on a whole new natural order of things? Why must my natural order match another’s?

What I see – and more importantly what I don’t allow myself to see – are the only blocks to my very own freedom no matter where I go, or don’t go.

Signed,

Tree Wil and Glitter Christie

Christie Taylor Uncategorized

The Perspective of Time

Wil has grown so much in his 10th grade year, and I can’t thank Kristi Campbell, Hope Schook and Heidi Drake enough for that! For this fact, it gives me space to snicker when I read about a day like this:

10:05 Refused to work
10:08 Turned it around
10:25 Refused to work
10:30 Turned it around
1:50 Refused to work
1:54 Turned it around

Just last week, I worked with a paraprofessional that subbed for Wil in 1st grade while his primary para was on maternity leave. We laughed that the main topic of daily conversation then was how to get Wil out from under the table most of the day. At the time, though, it was no laughing matter!

But with time, collaboration & communication with caring educators, we’ve come a long way, baby!

We are on to larger concerns, as Wil is an adventurous guy; without fear/recognition of danger which will likely be on our radar for years to come.

So seeing these little bursts of stubborness that he can resolve in minutes, is him showing his personality in full force and finding the self-desire within him to turn it around for a better day — while giving his teachers a run for their money! And we wouldn’t want him any other way!

Christie Taylor Uncategorized

Let Us Embrace Our Vulnerable Population

In embracing our vulnerable population we embrace our own vulnerabilities.

We crave Love. Love is the base of all things. Love is survival. We crave, live and breathe for Love.

In embracing individuals that we previously misconceived as having lesser value, we find in fact their value is greater than ours as theirs is the truth-pathway to LOVE. In embracing those we do not fully understand; we must find within ourselves a deep patience and seek to view life in new and fresh way. It is in this way we find Love — a love deeper than we knew existed. A love that touches and speaks of God. We feel God and His Presence even if we are not religious; even if we are non-believers. Whatever we believe, we cannot deny what we feel. We call it Love. And yet it matters not what we call it. It only matters that we FEEL it.

Once we are touched by that feeling, we crave more. This Love lifts us, lights a fire within us. We find it hard to believe it was something we closed ourselves to. But we did not know we were living behind a closed door until our child with a disability; or our experience with individuals with disabilities opened the door for us. The blast of fresh air is what alerts us once we open our minds. It blasts us with a gust, not unlike a hurricane; it forces us out of our closed mind so far that we can never go back. We never want to go back. In fact all we want to do now is pound on closed doors in our desire that those behind the closed doors know this Love.

We see the fear, and know the difficulty to get past that fear. But once you feel the blast of fresh air in your face you cannot but want more of it, and want more of it for others. And so you advocate for your child, but it is so much more than equal rights and acceptance. It is a Love, a Love for all that lays hidden. A Love that is locked away inside of us. We are scared of it’s immensity. But in the fight for your child you release it. You must, for their sake more than yours. And you find in this unlocking a Love greater than you ever knew existed but it does exist in immensity all around you. And when you breathe it in fully it grows and grows and grows. There is no end to it, and though it is bigger than you could ever conceive, even a small slice of it breathes new life into. You cry in the sheer love that you feel. And you know you can never run out of that love because it is always there, it is bigger than anything your mind can conceive.

You must re-open yourself to this Love every day. Recharge yourself with it. When the doors start to shut due to habit or other’s actions — your child opens the door for you with a kiss on the cheek, a simple gesture, or a silliness. And when you try to describe this type of grand simplicity that has the power to open a door, those behind closed doors see only the simplicity of the gesture, as they have not opened themselves to the grandness. They refuse to open the door to this Love, staying in a sheltered space they know. Fully unaware that the immensity of Love is available to them if they only unlock the door. But when we don’t know, and what we only know is behind the door there is great security in that. There is great control in that. And we think we are thriving when really we are not. We have created a life that feels good behind the closed door. Even when it doesn’t feel good, it is what we know — how terrifying to go outside of what we know.

When we spend time to truly know and understand our vulnerable population, oh, what LOVE. It is open, it is free. Our children never tire of opening the door; it is their nature. It is on us to open ourselves to them.

You will know when you feel the Love. This Love is yours, it is all of ours. It is in endless supply. Let us circulate it. Let us ventilate closed doors. Let us embrace our vulnerable population.

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

Unsuspected Connections

Yesterday, checking out at the grocery store, the grocery clerk commented on the cupcakes I bought. I said the cupcakes were for my son’s classroom for his birthday.

The grocery clerk asked how old my son was. I replied that he was my baby, and it was hard to believe he was already 16 years old. I shared that he has Down syndrome and his Life Skills class really enjoys birthday celebrations. She nodded her head silently and continued to check my items without another word. Ugh, I thought, I overshared.

After that pregnant pause she said her baby was 35. She went on to say her son was recently diagnosed with Schizophrenia. But he didn’t believe he had Schizophrenia; that everything happening to him was real. He was in the hospital, so at least they could be sure he took his meds, but when he got out, she’d be the one to ensure that.

Wow, you just never know what people are going through. Here I thought I shared too much with the grocery clerk; but rather unknowingly created a vulnerable space for her to share what was heavy on her mind. Though it was heavy, in a way we were both lifted by that encounter with one another.

Christie Taylor Uncategorized

Deeper Than a Good Deed

One of my favorite parts about Special Olympics events is when I thank the volunteers for their time, and they say, “No, thank YOU! We are so very thankful for this opportunity.” And in further discussion you find they volunteered once as a “good deed” and now it’s 20 years later and they wouldn’t miss it.

Many of us seek ease as happiness; or to step in for the sole purpose of a “good deed” to check a “feel-good” box without deeper intentions. But when we make a choice instead, to dive under the surface, to see what this “other life” really and truly means, we find the challenges are actually beautiful in their own way. It’s a new adventurous world that cracks open our hearts in a way we didn’t know possible. Like the Grinch’s heart expanding outside of his chest. But he too had to dive off his own hill with one intention, only to come back with a whole new unintended perspective.

Life can be deeper if we allow it to be. It’s up to us to make the dive.

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 Down Syndrome

The Dance

When Wil was born, I wondered on his differences. How would they separate him from making friends? How would his differences separate him from living a full life? What I didn’t know was Wil’s differences would become woven so deeply into our daily lives that they would be our norm.

One example is Wil’s dancing. When the mood strikes, Wil busts a move down the aisles of Target, Busch’s or Meijer. Wil gets jazzed going shopping with his sisters, because there are mirrors hanging everywhere to dance in front of. 

Chopping vegetables with me for dinner is always a hip wiggling activity for Wil, and a car ride another opportunity to belt a tune out the window.  

Wil’s had the music in him for so long, it’s ingrained in our lives. I forget that not everyone dances whenever the mood strikes, or bounces to the beat in their car seat, until a stranger gives Wil a smile as he rocks out to his own tune. I smile inwardly to myself, as I smile outwardly back to the stranger, how one-dimensionally I once viewed what differences meant. 

Wil’s dear friend, Sarah, is a ballerina. Sarah is graceful in every sense of the word. She is tall and lithe, and practically floats on air when she walks. Wil has low muscle tone so he lands flat-footed with a slight side-to-side gait. I love watching the two friends walk together, because they could not carry themselves more differently. Sarah, however, always makes a point to walk at Wil’s speed, and when he talks, she leans over so they are eye-to-eye. Then, I can almost predict at some point during their conversation, Sarah will throw her head back laughing at something Wil shared with her. And they always find time to share a dance. It’s been that way since preschool. 

On Wil’s 14th birthday, Sarah wrote in a beautifully-crafted handmade card to him: 

“I am so lucky to know you. You are so amazing and always make me laugh. Goodness, you’ve gotta be the funniest person on this Earth! Your laugh is so contagious. I always have fun walking around with you and talking about lots of things. Hope you have the best birthday bud!” 

As I read Sarah’s words, my eyes welled with tears. I now wonder, these 14 years later, how on earth did the differences I once so worried on become a true blessing? That this life, that such friends, have woven themselves into the dance of our lives as our norm. 

At one time differences stopped me in my tracks. Now, all I see are blessings in the dance.