Christie Taylor Uncategorized

Unwrapped

Wil double-stepped down the broad concrete steps. He paused. Then he threw both arms back, hinged forward at the waist, and propelled himself over the last step. Mid-air he hollered, “Jump!”

He landed flat-footed and straight-legged.

Dang, when will he ever bend his knees?

“Mom, jump!” He yelled.

I exaggeratedly swung my left arm back, but kept my right elbow tucked in tight to protect a cup of lidded coffee. I jumped and landed softly with bent knees, then lifted my right arm in an effort to match the flow of my coffee. A deep brown dribble of coffee escaped the small hole in the lid and slid into the rim. I sipped it from the rim and raised my cup to Wil.

“Woohoo!” He yelled.

“Woohoo!” I yelled back.

“They are angels.” A woman said. I spun around. She sat on one of the ornate ice cream parlor chairs in front of the coffee shop. She was dressed in full-on Kelly green. I could barely discern where her shirt ended and her pants began.

“I’ve worked with many Down’s people. All angels.” She said.

I heard Elizabeth and Katherine, as clearly as if they were there, burst out in laughter. Then in my mind I heard Elizabeth say, “Does an angel throw your favorite comb down the heat vent?”

My mom-mind immediately targeted the woman’s lack of person-first language. But like Wil’s straight-legged landing, a correction would have stolen the meaning of the moment. The woman clearly cared about the person; she cared enough to reach out to a stranger and share the ultimate compliment.

So I smiled. I listened. Then Wil got antsy. I wished her a blessed day.

Still, her comment sat like a lead ball in the pit of my stomach. I needed to reach down deep, lift it up and roll it around until I could identify what the weight meant to me.

Then I saw it…she had put individuals with Down syndrome in a box. It was a beautiful white-feathered box placed on the very top shelf, with the utmost care and kindness; but it was still a box.

I realized I had put myself in a box too; labeled: to educate or not to educate. It’s a grown habit that becomes ingrained over the years of hearing stereotypes both well-meaning and not. Of watching your child reach milestones in micro-moments, so even the slightest bend in the knee does not go undetected.

But sometimes moments are meant to be moments. Moments to take a leap and land just the way you are. Moments to accept a stranger’s kindness by her intent rather than her words. Moments to unravel what sits heavy with you, unwrap it and let it go.

If there was an angel that day, it was one who whispered the vision of Katherine and Elizabeth in my mind; filled with laughter and words to match the moment and burst open the box.

Christie Taylor Uncategorized

Word Up!

When Wil tries to figure something out, he has a back-and-forth conversation with himself: “Wear the grey shirt? Yes, yes, the grey shirt.” This will go on for his hat and shorts, too; and with most any task that requires decision-making.

He’s been having these conversations for about 5 years now. At first, I was concerned. He didn’t talk to himself, then all of a sudden he did — all the time. I worried these conversations developed because his peer group didn’t speak at his speed, and this was a coping mechanism to keep himself company. I did, however, enjoy hearing his thoughts, as he wasn’t always able to communicate them to me. And when he got stuck on something, I knew why.

Raising a child with a disability, you grow accustomed to digging into behaviors. Behavior is communication, but when your child isn’t capable of communicating, you put on your Sherlock cap and get to work. At first it’s something you figure out, then it becomes part of your everyday lifestyle. You don’t even realize you are doing it.

If Katherine or Elizabeth started talking to themselves, I wouldn’t think anything of it. I talk to myself out loud sometimes. It helps to clarify thoughts. And come to find out, that’s exactly what Wil was doing. But I didn’t see it because I’m always looking deeper than surface level, and not even realizing it. Wil doesn’t have the social filter that Katherine Elizabeth and I do in this area. To him, he’s simply making decisions out loud with no concern about who is listening.

Looking further into this behavior, I discovered it’s very common in people with Down syndrome, and can carry into adulthood. Now that Wil has been doing it for some time, I don’t even notice it as different anymore — because it’s not.

Today was a fun leap in Wil’s personal conversation. When he has his hands full getting out of the car, he’ll say, “Mom, I can’t do it, I don’t have enough hands!” (Don’t I know the feeling!). I’ll reply: “Sure you can!” And give him a few tips, such as tucking things under his arms, or making two trips — but who does that? Then I leave him to it. Some days he gets frustrated and sits in the car, and some days he takes my suggestions right away. Either way, he figures it out.

Today, Wil tried to get out of the car with a stack of CDs and his water bottle. Rather than addressing me this time, he said to himself: “I can’t do it, I don’t have enough hands!” Then he replied to himself, “Sure you can!”

He grabbed his CDs in a stack, opened the car door with his other hand, then got his water bottle, and bumped the door shut with his hip.

Now you’re talking, Wil! 😀

Christie Taylor Uncategorized

Mixed Medley

I dropped Wil off on the second morning of his first all-day camp.

He talked about camp for weeks; water balloon tosses, scavenger hunts, a trip to the beach – and parent-free. There were no tears at drop-off; Wil and I were both ready for this leap in independence.

This summer has been the Mom & Wil show. As 17-year-olds, Katherine and Elizabeth have taken trips, worked, and enjoyed the freedom of driving teenagers. As such, this summer has been a sneak-peek into life with Wil when Katherine and Elizabeth are away at college. As close as Wil and I are, we both require a level of time on our own. I knew it was time to find a way to spread our wings — but how and where?

This first all-day camp experience would be an ideal situation for Wil. It is where he takes taekwondo, so he is familiar with the staff and the venue. Master and his staff are very understanding of Wil’s abilities. They know when to push him, and when to give him space. Wil would enjoy time with typically developing peers and two of his taekwondo buddies who also have Down syndrome.

Even so, it would be a long day for Wil. He was focused on the fun; I was focused on preparing him for a full day.

“Wil, you know camp is a full day; the same as a school day. You’ve got to hold it together.”

“Ok, mom.”

“You are going to have a lot of fun. But you may get tired. And that’s ok. Just tell someone. Find Master, or one of the helpers in a red shirt. Tell them you need a break. Use your words. No plopping or running off. Got it?”

“Ok, mom. Camp! Yay, woohoo!”

I played my preparatory words on repeat in the weeks leading up to camp. It may seem redundant, but I knew from experience that he’d fly in blazing, only to find that it truly was a long day. He’d then fizzle into an exhausted plop on the floor, or flee overwhelmed out the door. His words, or words by others spoken to him, would be lost. Only time and space would unravel him.

Wil is fully capable of communicating that he needs a break. He just needs to be prepared to use his words before overwhelm or exhaustion overtake him. Therefore, we play things on repeat around here.

Wil focuses much of his life on the fun side, and I’m on a joy-ride with him. The flip side of that is anticipation, preparation, and words on repeat — and I’m on a replay-loop of constant-ness with him. Sometimes I need to step out of the loop and take time for myself, while Wil needs to take a step away from me, and forward into independence.

On the drive to camp this morning, Wil sang his own impressive a cappella medley of Luke Bryan songs — I thought dang! Even Luke would be taking notes on what Wil put together. But then again, Wil knows better than most how a mixed medley works.

Christie Taylor Uncategorized

It’s in the Experience

The teenaged lifeguard; tall, lean and curly-haired, stood on the edge of the wave pool blowing his whistle — at me.

I saw her face in his; though she was his senior by at least 20 years, with straight brown hair and a brisk uniform. She was resolute to get Wil’s boarding pass — from him.

Though the airport incident happened over 2 years before the wave pool incident, time came together in their parallels.

When a pool or a plane is involved, Wil is the happiest guy on the planet; until he’s not. Both travel and swimming fill Wil with excitement, unless it brims over to overwhelm; rendering him stuck on the spot.

In the airport, Wil was well on his way to overwhelm. I saw it building, so did my best to keep him distracted and on-the-move. But the heaviness was taking him over. Wil has never had a problem going through security, so I didn’t anticipate an issue. But when we approached the podium, either Wil read this security guard’s demeanor, or overwhelm finally overtook him. He sat on the ground, smack dab in front of the security guard’s podium. Not the wisest choice, but there we were.

I offered to hand the security guard Wil’s boarding pass, but she refused. He had to do it. I explained he was overwhelmed and had Down syndrome. That wasn’t enough for her. A grown woman chose a stand-off with a then 13-year-old boy with Down syndrome.

Fortunately, a few podiums over, another security guard was witness to what was happening. She asked how she could help. I explained our situation. She reached her hand out to Wil, he accepted it, and she walked us down to another podium. I heard the stolid security guard, upon our leaving, say to the security guard that helped us, “I was just doing my job.”

“I understand we need to get out of the pool,” I said to the curly-haired lifeguard. “My son won’t get out on his own. Just give me a minute.” (I sent up a silent prayer that a minute was all we’d need.)

I crouched down next to Wil and explained that it was dangerous to stay in the water; that a storm was coming; that when lifeguards hear thunder we need to get out; that we need to respect the rules; that they are there for our safety.

I knew my words wouldn’t motivate Wil out of the water now, but they would have meaning later should this happen again. Wil doesn’t fully grasp danger, but he does have an ironclad memory. When I preface a pool trip with the words “we have to get out if there is thunder” these will no longer be empty words. Experience gives Wil meaning to the words, thus being the best teacher.

A pretty lifeguard with white-blond hair stood only a few feet from us. Wil, being a teenager, would certainly respond better to her than me. I walked up to her and said, “My son isn’t wanting to get out. When he’s like this, he does much better with people who are not mom. Would you mind asking him to get out. Maybe offering him your hand?”

She willingly agreed, and approached Wil with an outstretched hand. Wil lifted his head, but couldn’t quite motivate himself to fully reach back. Though he stayed in the pool, I could see she had released some of his resistance.

Two female sheriffs that were nearby approached Wil.

“Would you like a sticker?” They held golden star badges up for Wil to see. I appreciated their efforts, but there was no way a sticker was going to prompt him out of the water (but maybe a trip to the clink would!).

Then another teenaged lifeguard, with auburn hair, walked up to me and said, “Can I help?”

The clouds parted and angels sang! No, that didn’t happen. Or else we would have got back to swimming. But that’s exactly how those words felt.

Three little words; only 8 letters in their entirety. And yet, I knew they were more than words; there had to be experience behind them.

The auburn-haired lifeguard, with a calm, friendly demeanor, reached her hand out to Wil and said, “Would you like to come with me?” Wil must have read her demeanor, because he stood up without hesitation and took her hand. He then looked at the blond lifeguard and took her hand too. Wil walked out of the water hand-in-hand with the two lovely lifeguards. Then the sheriffs gave Wil his stickers. I hope curly-haired whistle-blower was watching 😉

With Wil now out of the water, my main focus was to keep him moving forward. If this were not the case, I would have circled back to ask the auburn-haired lifeguard what inspired her to ask to help (same with the helpful security guard). What experience is in their back-pocket to step in and offer help?

Could it simply be a strong desire to help? Possibly, but my guess is it goes deeper than that. Is it gained from the experience of inclusion during their school years? Is it gained from experience with a family member or friend with a disability? Is it gained from experience as first being an observer then learning from situations such as these?

What transforms a stolid whistle-blower into an asker? What opens a mind from “doing my job” to “can I help?”

These are key questions that lead to the progression of acceptance and understanding of people with disabilities.

Within each of these questions, and likely within each of the answers, lies one common theme: experience.

And that gives me hope, because we can all learn from experience, if we choose to.

Christie Taylor Uncategorized

A Little Can Mean a Lot

Yesterday I went to Wolf’s Westside Automotive Service for an oil change. I had been there the previous day to have my tire patched. When I came in for my tire, the front door was propped open, the garage bay doors rolled up, and a refreshing breeze flowed through the lobby.

Yesterday was just that much warmer, so the bay and front doors were closed; a unit air conditioner cooled the lobby.

The owner, Pete, came into the lobby from the garage, sat down across from me, and delivered an update on my car’s service. Our conversation transitioned from the car to fitness and then into a story about his friend who has an adult daughter with Down syndrome. Though I don’t know Pete beyond the walls of his garage, in his storytelling, I heard true understanding. To attain that, without a child of his own with Ds, requires an openness to understand.

His shared story, and openness, were especially timely and meaningful to me as I’ve recently experienced the challenge of closed minds at a new level. I admit I’m somewhat naive in this area; thankfully. My fighting skills are weak; again thankfully. This town has always embraced Wil. I’ve needed to advocate, yes, but advocation is a conversation when you advocate with open minds.

With Wil getting older and other certain circumstances, I have now experienced lack of understanding, and the unwillingness to understand, on a broader level.

It’s hard to explain this life because a little means a lot. How do I explain, that every time I drive in the car with Wil, and he belts out Luke Bryan lyrics with complete accuracy, the elation I feel? That every word he forms beams me back to stretched-out years patiently waiting and diligently working on forming his first words? I have a million such stories.

All I need is a little crack in the door of a mind to get through. And yet, I physically feel the air fall dead between myself and a mind that is closed. I find this disconnection rarely intentional, and not meant to be hurtful. It’s not lack of experience with a disability that is the issue, it’s the unwillingness to open a door to understanding. Even the slightest creak of a hinge is all I ask. But for reasons of their own, deep within, they don’t want to know. The door remains closed. I find ways to keep knocking.

But not yesterday. There I sat, in our small town, for an oil change of all things, and with the natural flow of conversation a story was shared with full understanding. There was no knocking, no prying, no trying. The air conditioning was working, but all I felt was a needed breath of fresh air.

A little can mean a lot.

Wil and his friend, Manny
Christie Taylor Uncategorized

Heavy and Light

Wil loves riding his recumbent bike around our property. The challenge is I can’t fully trust he won’t go out to the road. And it’s a busy road.

I was talking to fellow mother yesterday. Her 16-year-old son, who also has Ds, is in summer speech and occupational therapy with Wil. As much as her son loves swimming, she will never have a pool. For the same reason I need to check in on Wil on his bike. She can’t fully trust he won’t go in the pool unsupervised.

Our children are teenagers. They know they are teenagers, their bodies tell them they are teenagers, and they desire the independence of teenagers. And as a parent that has raised 3 babies to teenage-hood, I enjoy a certain measure of independence too.

Last night, Matt and I were enjoying relaxing together after dinner. Wil wanted nothing to do with relaxing. He went outside to ride, and sure enough when I went to check on him he was getting close to the road. He was likely trying to make the biggest circle around our yard that he could, but again, I can’t be fully sure.

Even at 15 years old, he requires an extra level of supervision. And possibly, or possibly not, for many more years to come. With Wil one thing is certain — I won’t know until I know. (If you are a neurotic planner like me, a child w Ds is your best cure! 😂)

Many of my friends are becoming empty nesters. Matt and I may or may not be. I knew this uncertainty would be a reality when Wil was born, but now that the reality is closer, its an interesting feeling of limbo to be in.

I love my life with Wil. He is so fun to be with. We sing in our off-key voices at the top of our lungs. He still surprises me with new milestones, and huge bear-hugs that now knock me over as he’s grown. I’m thankful to fully share in his youthful exuberance.

But I also have a child that may never fully grasp the risks of certain fundamental independences into adulthood. The fullness of that can feel very heavy at times.

And yet, when life feels heavy, it’s being in Wil’s presence that purely and fully lightens the load.

Christie Taylor Down Syndrome

Just Make Him Do It

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

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

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

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

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

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

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

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

Christie Taylor Down Syndrome, Uncategorized

Just Friends Being Friends

“I was just wondering if Wil wanted to be part of the 7 dwarfs. We were thinking he could be Snuggly, Giggly, Silly, or Smiley! Considering Wil has all those traits!” I received this text from Ashley about Halloween costumes. Ashley and Wil, now in 8th grade, have gone to school together and been friends since preschool.

I read Ashley’s text aloud to Wil. He jumped up and responded, “Yes!” Wil chose Smiley, then I received another text from Ashley: “Or Seeger was thinking he could be the prince if he wanted to.” (Seeger is another good friend of Wil’s from school.)

“The prince!” Wil said without an ounce of hesitation. Which is quite apt, as Wil’s friends, who are planning a Snow White-style Halloween, are all girls.

Our Down Syndrome Support Team holds an annual Buddy Walk the last Sunday of September to raise awareness and acceptance for individuals with Down syndrome. With the pandemic, the decision was to hold a virtual event. Wil and his friends were not to miss out, so we held a small, local walk to which about 30 friends participated in. Wil, of course, walked with his close buddies, Ashley, Seeger, Lila and Sarah. At one point during the walk, Wil decided he needed a break and sat down on the sidewalk. Wil’s friends stopped and cheered him on. With their encouragement, Wil jumped up and they all started running. The friends joked it was the “Buddy Run.”

Near the end of the walk, we climbed to the top of school bus loop. Once at the top, Wil’s friends ran down the steep, grassy hill along the side of the bus loop. Wil remained at the top, looking trepid. Once again, the cheering section arose. His friends’ cheers nudged Wil over the edge and he tore down the hill. Once united, the friends jumped, laughed and cheered in a circle. It’s just as rewarding to be the cheerleader as it is to be the cheered.

Last year, I was talking to Ashley after school. She told me about an activity in gym the group of friends enjoyed participating in together. Then she said Wil grew tired and laid flat out on the gym floor. She shrugged her shoulders, smiled and said, “That’s just Wil being Wil.”

When Wil doesn’t have the words, his actions are his communication. Wil’s friends understand his language. Wil doesn’t judge others or create drama; it’s simply not in his arsenal. In that way, his friends are fully free to be themselves. If you are sad, he accepts your sadness without question. If you are happy, he accepts your happiness fully. If you feel goofy, he’s more than willing to join you in the silliness. If you need a hug, he has one at the ready. If that’s your clothing style, then it’s cool. To Wil, that’s just you being you.

As a parent of a child with special needs, I know first-hand the fight for acceptance. I also know first-hand that acceptance is quite fundamental: It’s just friends being friends.

Christie Taylor Down Syndrome, Uncategorized

We All Have Hard Stuff

Yesterday, I just didn’t have it in me. Yesterday, I did not have the patience that on somedays I find miles of.

Some days I wish Wil would just get up and get in the car when I ask him to. Some days I wish I could say, “We are leaving in 20 minutes,” and he’d go get his hat and shoes, and then we’d be on our way. But it doesn’t work like that.

Every time we need to go somewhere it’s a process. I start 30 minutes ahead of time with Wil. I ask him to get his shoes and pick out the hat he wants. Then I check in 10 minutes later. He may have moved closer to his destination, or he may not have. There is more coaxing. And then, eventually, he is ready to go. Or not. This is not once in awhile. This is all the time.

Yesterday Katherine and Elizabeth had driver’s education at 6pm, and that means we needed to leave at 5:30pm. I was making dinner and realized it was already getting past 5pm. It was time to let Wil know it was time to get ready to go.

I walked downstairs and told Wil it was time to go. “Ok, Mom. Hugs.” This is all normal. He’s big on hugs. I’m big on his hugs. That’s the beauty of not being in a hurry with Wil. You never forget to give and receive hugs.

After our hugs, I asked Wil to get his Crocs and pick out the hat he wanted to wear. He said ok and I went back upstairs to continue with dinner. Ten minutes later I didn’t hear any noises from him getting ready to go. I went back downstairs and he was sitting on the floor. He had been good-natured so I wasn’t sure what this resistance was about. With more hugs and coaxing, I told him it was time to go. He refused to budge. As I didn’t understand the reasons behind this particular refusal, I wasn’t sure how to talk him through it. It may have been a simple case of being a teenager and exerting his independence.

At times, Katherine or Elizabeth are able to get him moving. Katherine came downstairs. “Wil, can you get up and hold my hand? I really need a hug.” Wil looked at her and considered this, then ducked his head down. Not a good sign.

At this point, we were running out of time. “Wil, we need to go,” I said. “This is not fair to your sisters. You had plenty of time to get ready, and it’s time to get up.” He looked at me and looked back down. “Come on, one last hug. Can you get up and give me one last hug?” I hugged and tried to lift him up, which sometimes works. He resisted strongly. At this point, we were on the verge of being late. I asked Katherine for help. She asked Wil for another hug, but he sunk down deeper.

Elizabeth came downstairs to see what was happening because it was time to go. We literally had minutes left. I don’t like lifting Wil against his will, but I also don’t like sending him a message that this behavior is ok. We all need to work together – and that’s what we did, well at least three of us. Sometimes you have to do things you don’t want to do. After all of our coaxing and hugging, Katherine, Elizabeth and I lifted him up.

Wil is over 100 pounds, has low muscle tone so can wiggle out of your grip like a noodle, and he was unwilling. We made it up half of the steps to the landing and set him down. I again asked Wil to get up on his own.

“Don’t carry me. I’m not a baby.” Wil said.

“You are right Wil. You are not a baby. You are 13 years old. You are very big. So let’s stand up on your own and walk to the car like a big, grown up 13 year old does.”

No response. We picked him up again and made it to the door. Again, he refused to walk on his own. So we picked him up and made it to the car. Again, he refused to get in on his own. We picked him up again and got him in the car.

This whole process was physically and mentally exhausting for all of us. Wil was withdrawing in the backseat of the car, and I was doing all I could not to break down in a full out ugly sob. I hesitate to use the word traumatic, as that is quite extreme, but in that moment that is the best word I had to describe what I felt. It was a very heavy feeling. I just hated lifting him up like that and making him do something so against his will. But he also needs boundaries and to understand that we need to go and do things when he doesn’t feel like it; that’s just part of life. How to do that, how to balance that, I don’t know. I’ve learned a lot raising Wil, but I have a lot more to learn. And gosh does it hurt sometimes.

He was upset for some time in the car, understandably so. Katherine and Elizabeth seemed like they were fine, and we talked it out. I don’t like that they have to go through this either. This is part of their everyday life too. We never just get in the car and go. For them, everything is a process, and much of it revolves around Wil. Surely it has created great compassion and strength in them that many will never understand fully. I just don’t want this to cause resentment toward their brother. At this point, I’ve certainly seen loss of patience, which all siblings have, but thankfully no signs of resentment, and I’d like to keep it that way.

On the drive home, while Katherine and Elizabeth were at driver’s training, I asked, “Wil, do you know why we lifted you up in the car?”

“Hmph.”

“Wil, your refusing to leave was being very inconsiderate of your sisters. They cannot be late to this class and your refusing to leave almost made them late. When you have somewhere to go your sisters are very considerate of you. I’m asking you to be considerate of them, too.”

“Mom, I’m not listening to you.”

I stifled a laugh – this was so pure, typical teenager. I’m balancing Down syndrome and typical teenager with Wil. On one hand, this comment is a milestone for him; using his words in this way to express his emotions. On the other hand, the mother of a teenager in me was thinking, “Oh yes you will be listening to me.”

After I had picked up Katherine and Elizabeth from driver’s training and we had made it back home, Wil had recovered and was bouncing around in his happy state. Me, not so much. I still felt the deep turmoil in the pit of my stomach. Do you ever have this deep sob within you and it just needs to come out? That’s what I had and I was trying to hold it down in my stomach and process through it piece by piece to make sense of it. Sometimes I can do that. As I process each emotion and what it means, it eases the pain, bit by bit, until the sob has dissipated. This time though, the turmoil remained jumbled up in my stomach and I just couldn’t find the state of mind to unravel it.

Later that evening, we were all sitting on the couch and Matt asked Elizabeth how driver’s training was.

“Well, we were almost late thanks to Wil. But we made good time.” Elizabeth responded.

“What happened with Wil?” Matt asked.

Elizabeth told Matt what happened. I confirmed and filled in a few details.

“It looks like he’s fine now.” Matt said.

“He was upset for some time,” I said. “I hope the message sunk in. It was so hard. I know he’s bouncing around now, but he was really mad at me for a while.”

“Mad at you?” Elizabeth said and looked at me. How did that girl get so smart? She has amazing perspective for her age. Looking at her, and feeling how grateful I am for how both Elizabeth and Katherine roll with those tough times, and take it in stride, the sobs came up to the surface before I could even process what was happening. There was no stopping them then. I didn’t want the girls to see me like that so I went to my bedroom and I let it all out.

Matt came in and hugged me. I was so thankful to have him to hold on to. I sobbed my heavy sobs and held on to him around his waist.

We talked a little bit. I told him how I feel lost with Wil sometimes. That I don’t know the right thing to do when he’s like that. I don’t know if the message was received by him. I don’t like to force him, but reasoning with him is not always an option. And we talked some more. We are also raising two fifteen year old girls and that has its own challenges. There are days I feel like I’m failing, and this was one of them. Then Matt stood up and picked up this little note I keep Elizabeth made years ago that said, “Best mom ever.” He handed it to me. I loved him so much at that moment. More tears.

He said to me, “Everyone has their stuff, Christie. It might look different, and they might not always talk about it, but everyone has hard stuff they have to deal with. This is some of our hard stuff.”

And that’s why I’m writing this now. What compels me the most is for you to see the big picture on raising a child with Down syndrome. Some see our kids as happy all the time. They are not. Some see raising a child with Down syndrome as an always challenging journey. It is not. It’s a mix of everything, just like everyone else’s life. We all have hard stuff, even if it looks different and we don’t always talk about it.

This morning on the way to Wil’s swim lesson, he was jamming to his favorite Luke Bryan songs. The sun was shining and his high spirit was contagious. I couldn’t help but sing with him, as we ventured forward into a fresh, new day.
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Christie Taylor Down Syndrome, Uncategorized

Opening the View

I’m embarrassed of things I said before Wil was born. I was ignorant. I just didn’t know. Now, when I hear or read certain words, I cringe immediately. My kids cringe immediately. We know better, thank God.
When words hurt, our primitive drive is to react with a fight. Eliminate that word! It is evil. Words are easy targets. They are tangible. Something to go to war on. But is it the word? Or the feeling behind the word? The feeling is in the soul of the word. Once the word is killed, the soul will live on. Like a disease, if the spirit of the feeling goes untreated, it will come back in a different form.
So how do we fight a feeling? How do you fight the spirit of something? Or is even putting up a fight the right thing?
Nobody had to fight me to change my mind. I was instantaneously in a place where I needed to listen. I needed to learn. All that I thought I knew, or better yet, what I thought I didn’t want to know about, was staring me right in the face.
I may have opened my mind over the years with life experiences without having a child with special needs. I already was a fairly open-minded person, but I still closed my mind to things I didn’t want to know about. But now, oh how I want you to see this place. I want so badly for you to understand what I once didn’t. I want you to see how incredibly amazing this place is. How full, vibrant and enriching it is. How you would never, ever think think to throw stones in our direction if you only knew.
I don’t want to fight ignorant feelings. I don’t want to throw the stones thrown at us right back at the thrower. I want to open eyes. I want to open ears. I want to open all senses to the beauty that is right here in plain view.
You can’t eliminate a feeling with a fight. But you can transform a feeling by opening the view to meet all of the senses.
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