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

Got Curiosity?

My Grandma used to wrap presents in newspaper. In the opening, my fingers would be covered in smeary black smudge, but as a kid who cared? My Grandma didn’t much care either, which is why she didn’t spend time buying pretty wrapping. What was important to her was the giving.

Now I look back and both chuckle and endear the memories of gifts covered with my black fingerprints. The receiving of the gift also had my mark on it.

Curiosity, to me, is like those black smudged gifts.

There was once a day I did not want a child with Down syndrome until I birthed a child with Down syndrome. I got as curious as I have ever been in my life that day Wil was born.

My experiences were messy. I didn’t know what I didn’t know. Oh, I had advice. Lots and lots, but even in our community of parents raising kids with Ds, we laugh together about how what works one day likely won’t work the next.

Our culture also draws hard lines about what is right and wrong. But maybe, with experience, those lines may be smudgier than you realized.

No matter how much we know, or think we know, think back on all those smudgy experiences that led you to your beliefs today. Allow space for curiosity in yourself, allow space for curiosity in others.

Sometimes unwrapping the best gifts are when we have to get our fingers dirty first.

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

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

Blooming Naturally

Opening minds to acceptance need not be negative. My journey with Wil’s diagnosis is likened to a flower blossoming through a crack in the concrete, unfolding, stretching, growing, reaching, and opening fully to the sun. At first unbelievable, then freeing, and now a natural part of life.

Disability is a natural part of the human condition. Yes, you can argue I will get trampled again and again. Yes, I will be under the concrete again finding a new space to grow. But herein lies the difference. The concrete is real, but I don’t have to stare at it. I now know there is always a crack in the concrete somewhere because I have experienced it.

I’ve experienced bumping my head multiple times in search of the sun. I know that bumping my head — now in a progressive way — is simply part of the process in reaching a glorious opening to expand with the sun.

It hurts no less to continually bump my head. But I know, very deeply within me, that the more flowers I bloom, the more the natural human condition of people with disability will be recognized as a beautiful, natural part of life, and to be appreciated as such.

There is room for all of us to grow, but only when we open ourselves to fully supporting this growth that blossoms in its own natural way and time.

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 Down Syndrome

I AM NOT GRATEFUL

November is the month of gratitude, so I thought it timely to share this previously written post on why…

I AM NOT GRATEFUL

I was not grateful when I learned Wil had Down syndrome.

I am not grateful my marriage was challenged by our differing timetables of acceptance.

I am not grateful my relationships with certain teachers have been strained by differing ideas of how to approach Wil’s behaviors.

I am not grateful that I’m entering an era of hormones, girlfriends, and widening gaps within Wil’s peer group.

I am not grateful for the stereotypes and ignorance my son will experience.

I do cry. I do get angry. I do get frustrated. I do things I regret. I am not grateful for these things.

I am grateful for a deeper level of acceptance I would not have known if Wil didn’t have Down syndrome.

I am grateful my husband and I now share a deeper bond and respect for the challenges we worked through.

I am grateful that each day, month, and year, I learn more about special education laws, advocacy, and the fact we are human and make mistakes.

I am grateful for second chances.

I am grateful that I have come to know a strong group of proactive parents I can laugh with and learn from. I am grateful to call these strong, compassionate people my friends.

I am grateful these experiences have compelled me to widen my perspective.

I am grateful for the advancement of acceptance so my son may have increased opportunities for a fulfilling life.

I am grateful I can contribute to the advancement of acceptance and increased opportunities.

I do smile. I do rejoice. I do feel joy. I do things I am proud of. I am grateful for these things.

I am grateful my gratitude creates a deeper well for the times I am not grateful.