Christie Taylor Uncategorized

Staying Open

It happened after an event in the high school gymnasium. I don’t remember the event, but the after-scene is a moving photograph vivid in my mind. Wil approached a group of male high school peers on the gymnasium floor. At his approach, the circle broke with fist bumps, hellos, and high-fives with Wil. Two boys asked him a few questions, which drew Wil into the circle. Wil’s words – spoken with a slight stutter as he often does when he has so much to say, but his brain struggles to push the words out as quickly as he thinks them – had their attention. When Wil finished sharing, the boys resumed their conversation. The boys talked and laughed; the circle grew subconsciously tighter. Wil stood in the same place but found himself on the periphery.

These boys were not consciously excluding Wil. They were engrossed in their own stories and had forgotten Wil was there. It broke my heart to watch Wil walk around the circle of boys trying to find ways to re-insert himself.

Contrast this with Wil choosing to sit with a group of boys in the lunchroom mid-year. He one day, seemingly randomly, positioned himself at their table. They all welcomed him in and he joined them every day after that. The lunch table is also a more conducive environment for Wil to remain prominent while everyone is seated around a table. He can more adequately speak at his own pace. A few years ago, I spoke with a classmate about when Wil randomly sat at her lunch table. She said that at the time there was a lot of drama and gossip happening at their table. When Wil joined them, the drama stopped and the fun returned.

Wil recently went to his friend, Will D.’s, graduation party. Will D. also has a disability but has a much higher athletic ability than Wil T. Will D. has run ½ marathons and was on the track, cross-country, and baseball teams. As such, many typically developing athletic classmates attended Will D.’s graduation party. Two of these teammates were playing cornhole out in the sideyard when we arrived. These two boys gave a hearty hello to Wil T. and invited him to play cornhole with them. All the players found an equilibrium; their conversations were well-matched, relaxed, and fun. Watching this filled my heart.

At the water park yesterday Wil was floating down the lazy river in his tube. The lazy river is designed like an oblong circle, which splits and rejoins at one end. At the split, you choose to go under faucets spouting water or take the faucet-free dry option. Wil would alternate his decisions at the split, weighing more heavily on the “get wet” side. I watched as he by-passed certain tubers, and slowed to join others. He hung around a group of tween girls for some time, laughing when they laughed, choosing the same split in the river as the girls did. He then moved on to join a group of three young men. The men engaged him in some talk and fist-bumped him. When those young men exited the river Wil joined other young-ish groups. Down syndrome was on his side in this environment. No one questioned him, they immediately accepted him when he floated into their circle. Even if they didn’t converse, they shared the enjoyment and togetherness of the moment.

I wonder, what would the world look like if we all just opened our circles a little?

Christie Taylor Uncategorized

It’s the Chocolate Chips in Life

“It has chocolate chips in it, Mom.”

It’s those details that you never miss. The telling me about something, when at one time he couldn’t. I used to ask questions I knew he could answer. Because if he didn’t think he could, he’d shut down and I’d get nothing.

When Wil used to eat a chocolate donut – this is no joke – he’d mumble, “mmmmmmm” the whole time! I was like, that’s how you eat a chocolate donut! So my question of “Is that donut good?” was rhetorical but I would get an “Mmmhmm!” out of him.

Wil loves chocolate shakes. When he was younger, though I was the person who ordered the chocolate shake, when he was drinking it I’d ask, “What flavor is your shake?”

“Chocolate!”

Now he just tells me things. It may be sometimes later, well after the fact, but he’ll tell me things without my asking. The other day, well over a week after camp, he blurted out, “Walking tacos Mom!”

“Yes, you had walking tacos at camp. Those are so good! What were your favorite toppings?”

“Cheese, peppers, salsa…mmmm.” (His camp counselor said one of his favorite parts was the food!)

Last night he came home from the new ice cream place in town. As he walked in the door he said, “Want a taste?”

He held out his spoon. I took a bite and remarked on how good it tasted.

That’s when he offered, “It has chocolate chips in it, Mom.”

I suppose it could be said of such moments, “It’s the simple things in life.”. However, experiencing such moments built upon one another day-by-day and piece-by-piece, makes that saying much too rote.

If we do have to summarize such things, I’d much rather it be said, “It’s the chocolate chips in life.” Wil would give a big mmmmhmmm to that!

Christie Taylor Uncategorized

Stages of Independence

I sat in my seat as Wil walked up on stage to receive his school honors. He needed no support or assistance. He, like his peers, walked from his seat to the stage and back to his seat.

As he returned to his seat, I waved so he could find me, but he didn’t need my wave. He didn’t even look up at me as he made his way back. He knew where he was going without me.

Last Tuesday while in a class I’m taking, I watched a Youtube about people with physical and cognitive disabilities living on their own with support. If I was at home, I would have had a full-on sob. I consciously held myself together the best I could. Tears silently escaped the corners of my eyes that I discreetly brushed away.

What I was watching is fought hard for. These individuals’ independence, and the supports required for their independence, is what’s right and what these individuals fully deserve. And yet, this terrifies me for my own child at the same time. Wil will always have a level of vulnerability. I have to put a helluva lot of trust in someone else’s hands if he does choose to live independently with outside support.

And yet, here I am, the one who has worked so hard for his independence for the last 17 years, waving for him to find me. In many ways it’s we parents of our vulnerable kids who can’t let go. Our hearts are just as vulnerable as we navigate impending adulthood for our kids.

Christie Taylor Uncategorized

Whale Starts with W

“I swallowed a marble.”

I was in the living room. Wil was sitting in his bedroom adjacent to the living room.

Wil often talks to himself – many of us do. It helps us better process our thoughts, and it’s the same for Wil and for many people with Down syndrome. I quite like eavesdropping on Wil to better understand what is on his mind. Every morning he has a back-and-forth conversation with himself on what to wear: “Wear the blue shirt? Yeah, yeah, the blue shirt. Ok, the blue shirt.”

His exclamation about the marble though, was no back-and-forth conversation with himself. He wanted me to hear it. He was waiting for my response. Wil’s sister Katherine was home so he didn’t have my full attention as he’s grown used to since his sisters went away to college.

His attention-seeking strategy was effective. I went straight into his room.

“Wil did you really swallow a marble?”

“Hmph.”

“Wil, please tell me as this could be serious. I need to know. Did you swallow a marble?”

“Yes.” Then a moment later, “No.”

I actually had no idea if this was serious or not. I quickly googled swallowing a marble and found that it was quite common in young children. As a marble is round and smooth, most pass without issue. I sighed relief. But I didn’t want Wil to think he could add marbles to his diet.

I sat down next to him. “Wil, if you did swallow a marble, it’s very important that you tell me if your stomach hurts right away. Ok?”

“Ok.”

“So, did you swallow a marble?”

“No.” Then, “Yes.”

He was getting the attention he wanted from me and was holding tight to it.

“Ok, how about we go watch Olaf’s Frozen Adventure,” I said. Wil loves Frozen, and I love Olaf, so this was a show we both have watched together multiple times, which is why I chose it in this moment.

“Yes!”

I still have no idea whether he swallowed a marble or not. Wil does not outwardly lie. I’ve never heard him lie, and I don’t think he even knows what lying is. In this case he wanted my attention.

Other times, if I ask a question and he doesn’t know the answer, he will throw out a yes or no just to answer me, or whomever is asking. His eye exams can be quite challenging as this happens a lot.

But yesterday, he took one of his friend’s phones as a joke, and his teacher let him know this was no joke. His teacher then Facetimed me, with Wil, about this so we could all talk it out. Wil then understood the seriousness of taking other’s possessions. When Matt and I talked about this incident with Wil after school, he was very honest. As he always is with these types of questions.

After about 5pm every day, Wil will blurt out a detail about his day. This is a quieter time at home, or when we are in the car on the way to a therapy or the grocery store. He’ll blurt out, “Chocolate chip cookies!” Or, “Omelets!” Which is what he made in cooking class that day and then we can talk about it. But if I ask too soon, he won’t tell me. Wil shares on his own timeline when he’s had time to unwind and process his day. Then, he’s an open book.

Sometimes I don’t understand what he’s saying, so I’ll ask him to spell it. Yesterday I asked him what he did in choir.

“Whales.”

“Whales?”

“Yes, whales.” He said. Thinking I misunderstood him I asked what letter it started with.

“W.”

“Oh, ok.” Now realizing I heard him correctly, but the context was out of place for me, I then asked, “Did you watch a movie about whales?”

“Yes!”

It’s really interesting how breakdowns in communication can happen. I did hear what Wil said, but as I didn’t connect whales with choir, I thought I misunderstood him. I’m not the best listener, but with Wil I am because I have to be.

I used to say, “Oh, I’m not that kind of person.” But I quit doing that, because raising Wil I’ve had to be many kinds of people that I didn’t think I was.

Many think raising a child with a disability is a burden. But in fact, my experience has been that Wil has brought so much freedom in my life, in altering the way I think, hear and see the world.

Christie Taylor Uncategorized

Inclusion: Reason to Care

I’m no born-natural. I’m not made to raise a child with Down syndrome.

But here I am. And working as a paraprofessional, no less. I have a lot to offer, we all do. But I have a lot to learn; that’s exactly why am I where I am. Not because I was born with a special gift. I’m here because I have reason to care. And I do care; I care a lot.

The children I work with now have very different skill sets than Wil. Navigating these little humans’ ways of processing their world has been a great challenge and a great joy. I have good days and I have bad days. The bad days are hard. I beat myself up, and I’m working on that within myself. But I’m working with humans, and when I make a mistake it hits me personally. The upside is this is a high motivation for me to learn more – I’m always trying to figure out how to do things better the next time.

Raising a child with a disability I have come to learn one truth: life does not move in a straight line. When you think you’ve got one strategy down, you get thrown back 3 feet the next day. It reminds me of a game my Grandpa used to play with my sister and me as young kids. He’d sit on the back porch, leaning back in a cushioned chair blowing out smoke rings from a Viceroy cigarette. My sister and I would stand all the back at the end of the yard. He’d call out if we were to take small or giant steps forward and back. If we forgot to ask “Mother May I” we’d have to go all the way back to start.

Some days there is this invisible trigger within these children that I trip, and just like forgetting to say Mother May I, I get sent all the way back to start. But I get smarter, and I learn more and forget less. And finally, when I’m able to help one of these children through their emotional distress and they open up in communication, and they look up and smile at me, I float higher than one of my Grandpa’s smoke rings that I loved jumping up and catching on those long, summer days.

My work is hard. Raising Wil is hard. But so is just about everything else that we at first do not understand. Seek first to understand. Within those four wise words is enrichment in life. I’ve never lived so deeply as when I fully accepted my son. I still revert at times. I still go back to wanting the kids I work with to just do it my way. It’s easier that way – for me. But it’s not their way. It’s not the way their brains were made to work. And it’s also not all about everyone having their own way either. It’s about learning to work together.

Wil and I are recovering from Influenza A. He was all excited to get out of the house, but when it was time he got stuck. I sat down with him. I asked him what his upset was. Wil takes time to process and time to share. So I just sat there for 5 minutes. Not because I’m made for this, but over the years I made myself for this. And we unwound his wound-upness and we left the house without further issue. No one pushed anyone. We both had our say. It’s just time.

That’s what I am navigating now with the kids I work with. I’m learning again like I learned with Wil. I’m learning their way of doing things. Their way of thinking. And when I find that patience within myself, and I give these kids the space they need, it’s the most enriching experience ever. But sometimes it’s really, really hard to get there. Sometimes I’m just worn out from a 45-minute bout of emotional deregulation with still no progress and I walk away in tears. Because this is a human being and I’m disappointed in myself for not finding a way, and I’m tired and frustrated. Again, I’m not made for this but I’m finding my way because it’s so worth it. But like that game with my Grandfather, even though it can feel like it’s a setback, it’s really a setup for growth. A setup for being made for this. I get smarter, and I do better for these kids.

Inclusion is not easy, but it’s not evil either. On paper, it looks beautiful, and there are many proponents of inclusion that are more in love with the thought of inclusion than the reality of it. On the flip side of the paper, I still hear people say they “don’t want my kids with those kids.” Both stances are ignorant. Inclusion takes work. Inclusion takes listening and understanding what our kids with disabilities need just as we do for typically developing kids. It’s a game of Mother May I. When Wil had his first behavior plan in middle school, the first thing the educators told me was that it was a very fluid plan. We knew where we wanted to go, and we set parameters to get there, but the exact timeline and the exact steps would have to be navigated and adjusted along the way. What mattered most was that everyone at that table cared. We cared a lot. And that is what got us all through Wil’s puberty years to successful high school years.

No one is special and we all are special. We all belong together, no matter how pretty or messy it is and how many steps it takes and in how many directions we have to go.

The only requirement is to care. And that I know is natural within all of us. We just need reason to find it.

Christie Taylor Uncategorized

Rise & Shine

Last night Wil’s music therapist recapped his session with me. She said, “I know how hard positioning his fingers and his wrist is for him . I can see his restraint from giving up. He has a lot of focus to keep going. That shows me he has been well supported.”

That last sentence 😭 All the years with his educators and therapists and at home. The long stretches of time with few signals of what is working, and what isn’t. Until one day, progress rises up like a submarine shining upon the horizon, revealing the quiet forward motion that had been motoring under the surface all along.

When you see it, you can’t help but feel your eyes sting from the brightness reflecting off the surface.

Christie Taylor Uncategorized

Disability Invisibility Goggles

We historically do not like people who think differently than we do. We want things to work out the way we want them to and we surround ourselves the best way we can so things work out the way we want them to. When things don’t work out the way we want them to we get upset. We may blame ourselves, we may blame others, or we may blame God.

People with disabilities don’t work out the way we want them to. Think on how people with disabilities have been treated through the years. Disability is not seen as a part of the human condition. Disability has been explained away as a curse, a burden; shamed, hidden, tucked away. A therapist once asked me if I blamed myself for Wil’s birth. Hmmm, she didn’t ask me if I blamed myself for Katherine and Elizabeth’s birth.

Wil doesn’t fit into the definition of “things working out the way we want them to.” Sure, you could argue nothing really does, but did people celebrate your baby’s birth or tell you they were sorry? Wil lives outside of the above definition no matter how broad, wiggly or faint that line is.

There is a 5-year-old boy with autism that I work with. When we are out in the hallway transitioning from the classroom to a special, he likes to pretend he is a chameleon. He’ll push himself up against the wall and tell me he’s invisible; that I can’t see him. It’s a stall tactic, of course. I play along, asking where he went. I ask passerby’s in the hall if they can see him. The passerby’s smile, look back and forth down the hall and put their hands up. “I can’t see him anywhere.”

One day I thought of circling my fingers around to my thumb and placing my circled hands up to my eyes like glasses. I twisted my hands saying, “Click-click-click. I’m adjusting my invisibility goggles. Ahh, that’s better, now I can see. Hey, there you are!”

Raising Wil is like wearing invisibility goggles. I never knew this whole new way of seeing things was always available to me until I had a reason to care to see it.

I made my way through life, thinking the thoughts I did, defining things the way I did, without much further thought. I’d look up, I’d look down, and if things didn’t work out the way I wanted them to, I’d make them conform to my definition of what worked for me. My definition of “right.”

But what is right? What is normal? According to whom? Even if we don’t want to, we all have innate definitions of what these words mean to us.

Now I believe a better question is, What is? What is right in front of me? Am I seeing it for what it is?

Click-click-click.

My answers to these questions will forever be limited by my own vision; my own versions of right, my own versions of what works for me. My answers, though, as limited as they are, always have room for expansion. My view is no longer static, but fluid. There is always another level to view, another perspective to consider, another evolution to realize.

Raising Wil, I quickly realized I had to be fluid in my learning or I’d go crazy. The perspective I had at the time of his birth was not conducive to raising a child with Down syndrome. But here I was. It didn’t work for me, but I needed to make this work for me.

I realized then that I had a pair of invisibility goggles burning a hole in my pocket waiting for me to notice them. When I did, I never looked back. Invisibility goggles don’t work in reverse. The just look deeply inward, and expand outward.

Click-click-click.

Christie Taylor Uncategorized

An Ornamental Moment

Wil loves putting ornaments on the Christmas tree. Using his fine motor skills has always been a challenge for him; especially pinching.

As you can imagine, placing ornaments with loops on top gets tiresome quickly for Wil — but Wil always finds a way. When his pinching fingers are worn out, he puts the ornament loop on the very edge of a branch, or just slides that ornament right into the tree and nestles it between branches. He has as much pride in this placement of ornaments as he is still participating in decorating the Christmas tree.

I’ll wake in the morning to multiple ornaments on the floor that slipped off their precarious perch over night. I then look up and browse the ornaments he’s tucked into the Christmas tree. As I stand there my entire being is consumed in a humorous joy that is from somewhere deep inside me. My joy is such it could elevate me directly to the ceiling like in a Mary Poppins floating tea party.

My deep joy is born of deep worries. Deep worries I had in Wil’s younger years when I learned of his low muscle tone. Of when I cried seeing his fine motor skills test scores report a 6-month-old’s ability level when he was 5 years old simply because he couldn’t string beads yet.

I’ve learned a lot about the values and deficiencies of tests over the years. I’ve learned what to take at face value and what to hit the delete button on. I’ve learned a lot about taking life day-by-day. I’ve found myself celebrating what I didn’t know would ever happen— I’ve found a patience in myself waiting for even a glimmer of it to happen. And I’ve found myself become someone who celebrates in vivid colors “what is,” while “what isn’t” quieted itself into a hazy, distant background I once knew.

What I once worried about does mean a lot. But not in the way I thought it would mean today.

This nestled ornament is not only made of paper, styrofoam, cotton balls and glue — it is a symbol of deeply nestled worries grown into a deep, uplifting joy.

Christie Taylor Uncategorized

Inclusion

I am enmeshed in the world of people helping people; of making inclusion work. Personally and professionally. I am on a high learning curve, always, with both Wil and the children I work with. Down syndrome looks much different than other disabilities, and of course, no matter the disability, each individual is their very own person. There is always more to learn, to know, to understand, and new research and new ways of navigating situations. This world I’ve enmeshed myself in is both a challenging and beautiful place to be.

I recently heard an anti-inclusion comment. It hit me emotionally, like a pierce through the heart. It wasn’t about my son, but I felt it deeply personally. I was so saddened and I couldn’t shake it. I kept rolling it over in my mind. Though I know there are still people out there with these beliefs, it’s so outside the realm of where I am. The feelings were hard, but I didn’t want them to harden me. And thankfully, I had the perfect experience that very evening to put my perspective back in place.

Wil had his first music therapy. He was very excited and packed his acoustic guitar. As we walked into the building where Wil was to have music therapy, a mother and her daughter — her daughter had a disability — were walking out. We quickly assessed one another and shared smiles. An instant feel-good chemistry fills the atmosphere in such meetings of strangers. No matter how unique our paths are, we share a strong bond in the pursuit of unity. We know the path can be arduous, but we have chosen to walk it fully, and in that, we are conjoined warriors in the cause for the good of our children. We don’t slam doors, we open them. That’s what we do in any and every way we know how.

The music therapist welcomed us. As it was evening, her eyeliner was slightly smeared from a long day (as I’m sure mine was) and she had a pleasant, welcoming demeanor. Wil entered her room while I sat outside of it in a cushy black vinyl chair, happy for the rest. Wil and his music therapist instantly started a jam session. On the other side of the door, I heard her beautiful voice rise; I felt my whole body relax and rise in energy at the same time. She gave Wil gentle instructions on notes with his guitar. He sang his favorites, and then she sang hers.

When Wil and his music therapist emerged 45 minutes later, she had a glowing smile on her face. He is such a joy, she said, and by the way she said it, I knew she meant it. Both were high on joyous shared music and energy. And by proximity, so was I.

While I’m not thankful for the door slammer, I’m thankful for the eye-opener that the door slammer brought. To feel the sadness but not allow myself to be hardened by them; rather to rise higher with the good that surrounds us. I was reminded, right on time, of my deep gratitude for the high energy and joy of the door openers. No matter how high our learning curves, how many times things may change, or how exhausted we all may be at the end of the day, we always know, deep in our souls, that what we are doing matters. And it matters big. We are opening doors and creating shared atmospheres of inclusion no matter how unique each of our lives may look.

Christie Taylor Uncategorized

Abled and Disabled: Together We Just Do

When I was a very young child I remember asking my dad, “What IF this happens? And what IF that happens? Then what IF this happens?” He looked at me and replied, “There are no ‘what if’s.’ You just do.”

I don’t remember much else other than we were in the car on our way somewhere, and the tone in which my dad said those words, and the way he turned his head and attention from me in the backseat to back on the road, I knew there was to be no further discussion. My mouth hung open with a million more “What IF” questions stuck in my throat. I was terrified at the prospect of having to “just do.” What was I to do, if I didn’t know what to do?

Little did I know, that many years later, this advice would serve me very well.

When Wil was a baby I asked his physical therapist when he would walk. She replied that she didn’t know. He had very low muscle tone so it would be up to him. She said it would depend on his level of motivation.

Though I didn’t know when Katherine and Elizabeth would walk as infants, I never questioned IF they would.

What IF Wil doesn’t walk? What IF he doesn’t crawl? What IF he doesn’t talk? What IF I wasn’t doing enough? What IF I messed something up and he fell behind. Then what IF this happens? And what IF that happens? What IF…

I placed a big, bold stamp of “What IF” all over Wil. It’s incredibly detrimental. Yet, at this point in my life, I was riding along in the backseat with no idea where we were going or what I would do when we got there.

I was terrified of such an open-ended, ambiguous prospect. What were the parameters?

Wil’s physical therapist showed me exercises to do with Wil. We incorporated these exericises into his play. Katherine and Elizabaeth, just over 2 years old at the time, always wanted to be involved and did Wil’s exercises with him too. “What IF” turned into “we just do.”

In this new way of doing things, though we still worked toward the goal of walking, the purpose changed. It changed into ‘look what Wil can do’, rather than measuring what he can do against a time stick.

Every advance was celebrated. As “we just did” — though I still worked purposefully with Wil –I let the timelines go. Timelines weren’t as important anymore. It was all about watching Wil grow, get stronger, and develop in his own way and in his own time. And as time went on, we adjusted with his growth. We just did.

Funny, I don’t even remember exactly when Wil started walking when it was once a monumental part of my life. Not that it wasn’t important. But what I remember most vividly is working with Wil and with Katherine and Elizabeth. How Katherine and Elizabeth loved to encourage him, and play with him, and how we all worked together to help him achieve his goal of walking when he was ready to walk. We just did.

I accepted Wil’s diagnosis long before he started to walk. But I learned to accept the value of what disability means the day I quit asking “what if” and focused on just doing.

That’s when we see the value of the individual person. Not stamped with a big, bold “What If” stamp dividing abled or disabled. But by seeing who we all are by lifting each other up, supporting one another, so we all rise in our own space and time.

What IF we can be a society that sees individuals as valuable without holding up a measuring stick of parameters?

There are no what ifs. You just do.

My dad and little Wil