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

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

Extra Chromosome = Extra Life

Yesterday Wil and I were driving to get his hair cut. Wil always takes my phone, searches what he wants to play on Amazon music.

If he diverges from Luke Bryan he’ll say to himself, “how to spell Dierks Bentley” and type it out using phonics. Sometimes this works, and sometimes it leads to frustration and more tries. I listen as he figures it out, only helping when necessary.

Wil used to think Rodney Atkins’ name was Ronnie. He was adamant about this. But his searches lead to dead ends.

“Wil, it’s Rodney. Like a fishing rod, and your knee. Rod-knee.” I mimicked throwing a fishing line then pointed to Wil’s knee. Wil liked this explanation so gave up his strong adherence to Ronnie. Rodney became a joke between us, Wil throwing a line and hitting his knee.

There are two parts to nearly every story with Wil. As a parent, I always notice the learning happening. Always. It’s part of my every day with Wil and has been since day one. He needs extra in life, and the extra given gives back, without fail, in every experience, no matter how seemingly small.

The other part of each story is the joy. It’s pure. Because Wil is Wil. He’s all in to who he is, and that can not be faked. That’s why people are drawn to him.

There is a vulnerability to that which scares me. He can easily be taken advantage of. And yet, his vulnerability is the bravest way of being a human being without the effort to be brave. Wil is Wil.

When Wil listens to music he is all in. He rocks back and forth in his seat. As I’m driving, I sing and move my head but don’t rock at his level or I’d be off the road!

As is often the case, we will reach a destination and he wants to finish the song. I decided to match his back and forth rocking. It was a damn workout and I only matched his pace for just over a minute.

We’ve been at stop lights where people look over because he is moving so much. He never notices them looking but if he did, he’d look over and smile and keep on going without missing a beat. That’s authentic joy ~ freely sharing your inner joy outwardly with whomever wants to join in, and if they don’t he’s not bothered because he is all in.

As for me, I’m always learning too. The extra I give Wil always gives back more than I could ever give or have imagined to receive.

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

Beyond Our Own Bubble

Nothing about disability should make one uncomfortable. The discomfort within is simply a block in the desire to understand.

A desire to understand is hard work. It requires a shift in perspective. A vulnerable openness.

But even when a small fissure in that block opens within us, the sliver of light is absolute glory. I know this personally. This is when we begin to see a much wider world that has always been right in front of us.

But we will never see beyond the block until we have a desire to do so. Until we create an openness within us.

It pains my heart to know how accessible this joy is, but so many minds remain blocked to it out of the discomfort to understand.

Christie Taylor Uncategorized

With a little help from my friends

Wil had a very hard morning. He would not get out of bed. Would not budge. Usually I tickle his feet. He laughs, sits up and says, “Hug Mom!”

He loves high school so even if he’s tired he is typically happy to get up and go. This morning was a throw back from the middle school years when hormones were running high and he had feelings he could not process or communicate at the time which lead to many new behaviors. But we emerged from that time; even if he has a slow start now, he can talk to me and work through it on school mornings.

I racked my brain as to the causes of his demeanor. My guess is a cold is brewing within him as I’m sick, plus he had Social Group Wed night and Music Therapy last night; he’s probably just plain tired.

As he laid in bed, he grew increasingly upset with himself for not moving, which ironically kept him in the “feeling stuck” loop. A wise special education teacher, Mrs. Hancock, shared with me that on these situations it’s about responding not compliance. I thought Matt, being a fresh person in the scenario, would help break him of this stuck loop.

I called my husband Matt at work on speaker phone. Wil shared with Matt that he was “upset.” I felt my heart jump up and cut through my stress with elation. For Wil to share his emotions in his current emotional state was a very important advance. After talking to Matt, Wil was able to unwind whatever was wound inside him and turn it around.

Wil started to get dressed but was still teary. I asked if he needed a hug. He gave me a tight one then I felt him loosen up. I knew then that he would be okay. I texted his teacher to let him know the situation and Wil may needed a calmer start to his day. I’m thankful he begins each school day in the life skills room rather than gen ed so he can go his pace to start and then gain momentum for choir, PE and art.

Our friend, Kate, had previously offered to drive Wil to school that morning, so again a fresh person always helps Wil’s demeanor and he adores Kate. When she walked in the door, she said she had his favorite songs ready to go in the car. Music to his ears (and mine)!

I was very rushed at that point — I hadn’t even brushed my teeth yet as I’d been trying to motivate and give Wil the time and space he needed for the last 30 minutes. I quickly made him his breakfast request to go — 2 turkey dogs with peppers, mustard and relish.

After he’d been in school for about 2 hours, I received a text from Jessica, whom I work with as a paraprofessional, forwarded a picture taken by Ashley who is working in his classroom. Seeing Wil smile big with his classmate buddies made me 🥹🥹🥹.

This morning was very hard, but as Mr. Rogers wisely said, “Look for the helpers. You will always find people who are helping.” ❤️

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
Christie Taylor Uncategorized

Wil Rode the School Bus Today!

Wil rode the school bus today.

In this house we take no such statements for granted.

In middle school, Wil riding the bus proved unsuccessful. He was already having a hard time transitioning to a new school with new educators and hormones were in full effect. The middle school years are challenging; then add in communication barriers and cognitive delays that a body’s progression into puberty does not wait for, and you’ve got behaviors. Every day was a new experience, and we were rewriting the plan over and again. Finally, I called “Uncle” on the bus riding as it was adding stress to Wil amongst all the other areas we were navigating at the time. It’s challenging to do that, as you never know if you are giving up at the right time, or too soon. But what I have learned is no matter what the success — or lack there of — looks like from the outside, there is groundwork being laid on the inside.

Wil is now in 11th grade. He loves being 16 years old. And he is fond of reminding me he will be 17 years old on his birthday. He wants to go to college like his sisters. We will cross that bridge — in this house we are very used to crossing bridges as they come. As he is growing into his indepedence and his maturity has blossomed, he told me he wants to ride the bus home. I joyously concurred.

Last spring, he did ride the transfer bus from his high school to the elementary school where I work. This was very successful, so I think it was the perfect nudge to riding the bus the full way home.

All was going smoothly until 2 weeks ago. Wil walked to the bus like he always did, but then just kept on a-walking. His teacher ran after him and walked him back to the bus. Wil refused to get on. So Wil and his teacher walked to the office. His teacher called me and I picked him up. This happened every day for a week.

All I could get out of Wil was that the bus was too crowded. He refused to sit up front where it was quieter. But he is in 11th grade, so why would he want to do that? I suggested his noise-cancelling headphones. Wil is very aware of his looks, and doesn’t want to look different. I want to make clear that he is in no way ashamed of his disabilty, nor should he be. And noise sensitivity is part of his disability. But Wil puts great importance on his appearance, and you know by now his deep affection for baseball hats, so noise-cancelling headphones would throw off his style; and his hat. (Wil only wears his headphones now if he is at the movies or a concert, but he’ll only go to these loud places if he really wants to be there.)

So, here we were. Wil refused to ride up front where it was quieter. He wanted to sit in the back with his friends. But it was too crowded. So it makes total sense that he would attempt to walk up to the bus, get nervous and keep going.

Just being able to make sense of things is HUGE!! When Wil was in middle school, he was not able to express to me his reasons for being nervous on the bus. His educators and I had to do our best detective work, but with so many factors at play, our best guesses were only that — guesses.

As Wil could now tell me the reason for not riding the bus, we could have a discussion about it. Now Wil had true ownership in his decision as we could have a conversation about his options as I knew what the struggle was.

Whether what we come up with works for the long-term or not is to be seen. But what is most important is that Wil has a voice in this, and that is something he’s always deserved to have, and we’ve worked hard for him to share it.

With this knowledge, Wil’s teacher created a chart to hang in the classroom. Each day Wil rides the bus he will get a sticker. Wil thrives on recognition so was immediately into this idea. Every 3 stickers, I will take Wil to the market to pick out a handmade sandwich of his choice and a drink. He also loves this type of adventure.

Today is day one of this plan. I went up to the school and parked in the lot just in case Wil refused (I parked out of Wil’s sight so he wouldn’t backtrack.)

Wil’s teacher walked with him, and he successfully made it on the bus!

In this house, we celebrate successes!

Today is one day, tomorrow will be another. And so will the next. Every day we cross a new bridge. Every day I will feel a tightening in my stomach at 2:45 with one eye on my phone. And every day it doesn’t ring I’ll release the butterflies in my stomach to fly in celebration.

In this house, every day is a new day. We never take such things for granted.