Getting Better: Navigating My Son’s Growing Independence

This past spring, I wrote about an incident with Wil at the park. He would not leave and despite many tactics, he remained unmoving, so Katherine and I physically lifted him to the car. It was a very emotionally trying experience for all of us. That time stuck with me and I thought in my mind over and again how I could have done it differently if it were to happen again. Well yesterday it did.

The kids and I took a trip to Barnes & Noble. It’s one of our favorite places to browse. It has something for all of us. We wandered in and found our favorite places. The twins browsed teen books while Wil and I went over to the neighboring stacks to look at the multitude of games:

“Look, Mom! A shark game!”
“Oh, Squigz! I have Squigz!”
“Mom, see this!”

In-between looking at games Wil and I would wander over and see what books the twins were looking at. Katherine is into adventure so we read some book covers together to see what might be the most exciting read. Elizabeth is into drama, so we ventured over to that stack to see what held the most appeal. While Elizabeth and I were discussing some options, Wil started to badger Katherine. I knew we were getting close to the end of his patience level. I suggested Wil and I walk over to the young kid’s area where the Thomas the Train tracks are set up. The girls were close to making their selection so I asked them to find us at the train when they were ready.

Soon, Katherine and Elizabeth found Wil and I at the train, and with books in hand, we all made our way down to the first floor. Katherine and Elizabeth took the escalator down while Wil and I took the elevator (though Wil loves escalators, he won’t get on the Barnes & Noble escalator. It is out in the open and not enclosed by walls, so that may be the reason. Regardless, who doesn’t love getting to press the elevator button yourself and not having to share with your siblings). As Wil and I exited the elevator, we passed the music section. It is somewhat enclosed with one entrance and exit. I waved the twins over to indicate where we were going. Wil ran in the music area and started to look at all the DVDs. It was DVD heaven a mile high.

We all browsed the DVDs for awhile but soon Katherine and Elizabeth said they were ready to go to lunch. I had promised lunch at Panera bread.

“Ok, Wil, let’s go.” Katherine said.

“No!”

“Wil, come on, don’t you want Mac n Cheese at Panera? You love their Mac n Cheese.”

A few moments of consideration.

“No.” Then he sat down. Uh-oh.

“Hey, buddy,” I said, “come on, it’s lunchtime. We can sit outside, it will be fun.”

No response.

“Ok, 3 more minutes then it’s time to go.”

“Ok!” And he stood up again.

We browsed a few more minutes and I said it was now time to go. He responded by sitting back on the ground. We tried to coax him up but it was a no-go. Elizabeth offered a piggy-back ride which he usually accepts, but not today.

Like all of us, Wil needs to feel in control of his environment. At the park, we had a time crunch situation. We did not have that here, so I said, “Katherine and Elizabeth, I know we are all ready for lunch, but let’s give him some time like we did at Hidden Lake Gardens. We all like to feel in control of our environment. When he feels in control of his space, I’m sure he’ll be ready to go.” (Last summer, Wil was tired on a nature walk at Hidden Lake Gardens and decided he was done walking in the middle of a trail. When Katherine, Elizabeth and I could not coax him up, we gave him some space. We walked ahead, just far enough so he could not see us, but we could see him through the trees. After a few moments, he got up and willingly walked the trail, staying a few feet behind us, then eventually met with us on his own terms and we all ran down the hill together at the end of the trail.)

I had a coupon for the coffee shop, so I gave the coupon and some money to Katherine and Elizabeth.

“Why don’t you girls go to the coffee shop and buy a latte or iced tea, and I’ll give Wil some time and meet you at the coffee shop.”

“But aren’t we going to Panera?” Elizabeth asked, worried that we were now going to miss out on lunch.

“Yes, honey, we are. I just want to give him some time so he feels back in control of his space. You know how that feels. Just get a drink now, and we’ll have lunch at Panera in a few minutes.”

“Do you want me to get you a coffee Mom?” Elizabeth asked. I love that girl!!

“Thanks, honey, I’ll get one at Panera, you go ahead and get what you want and I’ll meet you in a minute.”

I watched Katherine and Elizabeth walk off together, chatting about what they were going to get. They sure are growing up. I’m very proud of all they take in stride.

Wil was still sitting on the ground. I said to him, “Wil, I’m going to the coffee shop to meet your sisters. When you are ready, you can find us there. See you in a little bit, Buddy.”

Thankful there was only one entrance and exit to the music area in this situation, I walked out of the enclosed music area and stood just behind a book stack waiting for Wil to exit. In only a few minutes, Wil walked through the music area into the main bookstore and looked for the coffee shop. I didn’t want him to see me right away because I knew he needed this independent time to feel in control of his situation or he’d be right back on the floor unmoving. I followed him to the coffee area and there he exclaimed, “Sisters!” and walked over to his sisters and gave them a hug.

“Great job, Wil! Are you ready to go to lunch now?”

“Uh-huh!” He was so proud of himself for making this trek on his own.

Hooray, success!! As Wil gets older he wants more and more independence and he deserves more independence. It’s important for his confidence and his development into becoming a young man. But there are certain dangers that he does not comprehend and I need to be there at an arms-length distance. I’m thankful in this situation I was able to do both.

Back at the park, I knew I could have done better, I just didn’t know at the time what that better was. I pondered that incident and realized what I didn’t give Wil was time and space. In fact, that’s what we all need; time and space. It’s just in different doses. Since I was in a time crunch at the park, carpooling kids and needing to pick Elizabeth up at a certain time, I placed that time crunch on Wil. We tend to focus on very few options when there is stress involved. Yet, there are always more options than we allow ourselves to see at the time. Having the benefit of hindsight, I promised myself if a similar situation were to happen again, I would take a deep breath and think of more options.

There is this quote that I love by Maya Angelou: “Do the best you can until you know better. Then when you know better, do better.”

Yesterday I was thankful for the opportunity to do better. To find options that gave Wil the time and space he needed while also giving Katherine and Elizabeth the time and space they needed. Seeing my three kids hugging in the coffee shop, I knew that day, I did better. That is a wonderful feeling, indeed!

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I Be The Conductor

Yesterday, driving home from the grocery store Wil and I drove over railroad tracks. He yelled out, “Railroad tracks! Mom, I be the conductor.”

With the excitement in his voice, you’d think it was the first time he saw railroad tracks. In fact, we go over those very same railroad tracks frequently on various errands. Yet, each time he calls these tracks out like he’s seen them for the first time. How very refreshing it is to be in his presence!

Wil makes the simplest moments so very fun. I’m reminded constantly how blessed I am, no matter what is happening in my life, right here and right now. That as complicated as things are, happiness is always here. It’s not in things, it’s in us. Yet, ironically, the more we chase or run away from certain experiences in our lives to find a certain happiness, we lose our perspective of what it was we were going after in the first place. In these very simple, every day moments, like the car bumping over railroad tracks, Wil has an uncanny way of reminding me that happiness is not elusive. He pulls my mind immediately to the present moment. All the outside thoughts get pushed to the side. It’s just him and me and we are in this very moment. Life is always right here, right now. It’s not behind or in front of us. And these very moments build in me a stronger enthusiasm to tackle the future hurdles and let go of the past pains that no longer serve me. I believe the way Wil never forgets to be present in a moment is why Wil is so magnetic to those around him. We want what he has. We want his simple, yet powerful joys. He is a reminder of the blessings we live every day, the blessings we all know inside of us, but just sometimes forget in our forward or past looking pursuits.

The next time we are at a crossroads, let’s imagine ourselves bumping over a set of railroad tracks to snap our minds out of their future or past thoughts, and bring us right to the present moment. May we stop for a moment and take note of the simple yet powerful blessings we do have around us at this very moment. Let that joy build in us strength to overcome the obstacles ahead and to let go of the past thoughts that no longer serve us. After all, we “be the conductor” of our thoughts, and that may be one of our greatest blessings of all!

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It’s All Relative In Science & Magic; Understanding Differing Passions

Dad and me

When I was in high school I did not like science. I had zero interest. The flip side of that was I wanted good grades. So I had to care enough to get a good grade and move on. My dad, trained as a chemical engineer, loves science. Specifically, the periodic table of elements. He’s a smart man all around, and I was lucky to have him help me with my homework. He would read the chapter of my book we were working on to refresh his memory, then the light bulb would go on, “Oh this!! This is so great! See, Christie, this is how it works…” And he would expertly and enthusiastically explain how it all worked with much more detail than I was interested in. I’d get the entire background as to how it all came together. In his mind, nothing was better! Though I knew how fortunate I was to have my amazing dad, I was like, all I wanted to know was how to answer number 4!

Even so, I thoroughly admired his enthusiasm and excitement and that part was contagious. Though I never shared his full enthusiasm for the periodic table, it inspired me enough to get a surface level understanding of the subject that I would have likely never conjured on my own. However, the deep underlying workings of this science never stuck. It was like there was this wall inside of me, and I really needed a deep care about science to break it down. Whatever it did to light a fire in my dad, was not compatible for me.

Many years later, I’m still that way with science. I get excited about the things I need to know, such as my interest in science in terms of running a marathon because I care enough not to hit the proverbial wall. I’ve hit them before and they are not fun. That is motivation in itself. I do love to know how the body works, and that has helped me a lot as a coach. However, what is most important to me, that fills me with the excitement and enthusiasm my dad shared, is the power of the mind.

I’m thinking of getting Wil into CrossFit. It would be a beneficial workout for his low muscle tone. I was talking to a local CrossFit gym owner who is a very dedicated and knowledgeable man. I really enjoyed talking to him as we clearly both share a passion for fitness. He was telling me how runners are the hardest population to train in CrossFit. Runners love to run. CrossFit breaks things down and that is very challenging mentally for runner. He said he used to be a runner, and though running is satisfying, you really need more.

Scientifically, you do. I do not disagree. We runners need cross-training to stay muscularly balanced to avoid injury. But what I love most about running is what rises above science. It’s how you feel. And you need that big, open space in front of you to do it. Surely, you can try to break down the feeling runners get to endorphins, and all of that. But only partially. I would challenge any scientist to take even one person, measure what they have going on in life, how they individually process those personal events, then after going for a run, how the trajectory of their thoughts change after said run and how exactly they now will behave different because of said run. While some predications may be made, an experience like that could never be accurately measured even with large margin of error. I love that piece of mystery in our lives that is all controlled by our minds.

When I talk about this piece of running to non-runners, I see the same look in their eyes I must have given my dad. They see my enthusiasm, they even absorb it, but inside there is this wall inside that just doesn’t really care enough to break it down. They hear what I’m saying, but it’s just not getting through. That’s ok, just like myself and my dad, we have some interests that just don’t mesh. What’s important is, having something powerful enough in our lives that rises above science. To share our enthusiasms about things so we can at least have an understanding between one another.

Right now, on few recent occasions, I have felt this wall between me and explaining some of Wil’s limitations. We all have our limitations, though some of his limitations are different from what the general public experiences. He has a high sensitivity to noise. Any loud place, like the movie theater, a stadium, an auditorium, a sporting event and anywhere animals are, he needs to have his ear protectors on. It’s very unsettling to him. This sensitivity requires forethought to where we are going and what we might encounter. There are extra steps required, extra patience, extra explaining that must be done to people who do not understand because this is not their norm. Like my dad did for me, I share my knowledge that I didn’t have before, my exuberance, and explain why this is hard for him. But there are times I see that same look in their eyes…the wall is there. Like my dad did with me and science, I’m not looking for a full convert, just a surface understanding. Which I don’t feel is too much to ask. So, when I encounter this wall it is incredibly frustrating to see a blankness and unwillingness to understand and have compassion for his current limits. Because deep inside all of us we have these walls, and they are never broken down unless we make ourselves care enough to make a change.

I can’t make other people change and see things the way I do just like my dad couldn’t make me love the periodic table and the CrossFitter will never convert me from running. Likewise my enthusiasm about running may not to turn the non-runner into a runner. I do firmly believe, however, that we learn from and absorb one another’s shared enthusiasms and passions. That above the specific quantifiable mechanics of the periodic table, above the long, beautiful streets to run, above the heavy barbells, and the loud noises my son is sensitive to, there is something we can all share. Our enthusiasm and passion for what we love is contagious and can be powerful enough to open us up to a certain level of understanding if we allow it to. Though this may not be enough to break a wall inside, it does allow us to meet in a place where we can work together. To get through to make the grade, to be compassionate, to try to understand where the other person is coming from.

Even though I still don’t give much thought to the periodic table, when I look back I still smile from the memory of my dad’s enthusiasm surrounding it. Though my memory of how all those elements fit together has long disappeared, the feeling of that time still remains. I didn’t have to understand it like he did to benefit from what he taught me. He taught me to love something, and love it a lot. And share that love even if the person receiving it doesn’t fully understand at the time. It’s not really about the elements, but a love that we hold inside that can be shared. That is something that can never be measured, quantified or encapsulated.

Magic lives in our minds and how we think about events and how we open or close our minds to them. How we change our thoughts and break down our own walls or simply by taking on a new surface level understanding. Magic grows and expands on how we feed and share our passions and enthusiasms. Passions and enthusiasms have the ability to continuously expand, change, and evolve depending on how they are felt, shared and willingly received in an unquantifiable way. Oh how I love the unpredictable, unmeasurable magic of that.

Finding Common Ground

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Back when Wil was younger, I’d look at kids that would take off running across the playground. Wil would take off running with them as fast as he could, but he would instantly fall far behind. That’s a tough thing for a mom to see knowing that not only will he not catch up, but likely fall further behind. I’d see the kids laughing and talking back and forth, and Wil would be laughing, too, because they were, but clearly he had no idea what they were saying. I would wonder, what is it going to be like as he gets older? How will he communicate? Will people stop to listen? Everyone has something to say, no matter how long it takes us to say it. How will he find common ground in a world that moves so fast?

And, then, as if in answer, there were always those friends that would stop and turn around to see where Wil was. They would run back toward him, grab his hands and say, “Come on, Wil!” And I would watch with tears in my eyes, immensely thankful for the different gifts Wil and his friends give to each other.

Every school year we start anew. My eyes are keen for the kids that stop in their fast play. The kids that slow down and talk to Wil. The kids that look him right in the eye and ask him a question and wait for as long as it takes for him to answer. Kids that sit with him at the lunch table while the others have gone off to the playground. And when Wil is on the playground, the kids that stop their fast-moving game and include Wil at a level that he can play. The kids that Wil gives a high-five when we meet in town. The kids that Wil runs up to and hugs. The kids that immediately see Wil and come running over. Without fail, all of these interactions are met with a hug, a smile, and many times laughing and silliness ensues. Ask any one of them, and they’d all say it’s worth the wait.

Potty-training for Wil took 2.5 loooong years. Wil was in the middle of Kindergarten when he finally decided that the potty was a good choice. But, with Wil, you can’t force time. You can help him along, give him the tools, but he is the one who ultimately decides when he will use those tools and how he will use them. Back when I began the process of potty-training with Wil, and mind you I went to a seminar our Ds support group put on about potty-training kids with disabilities, bought the book, read and followed the book, and had many talks during this process with fellow moms in our Ds support group (we laughed how we never had so much potty talk in our lives before having kids with Ds!), he remained happy to take care of business just about anywhere, anytime. During all of this, my parents were going to watch Wil for the weekend while Matt and I went up north with the twins. My mom was joking with a friend about my adventures in potty-training. This friend told my parents that I was likely too busy to potty-train Wil with his twin sisters being so close in age to him and that was what was taking so long (grrrr!). My mom shared this with me and said that she would try to potty-train Wil over the weekend for me. After I stopped silently chuckling to myself, I thought, you know, what the heck! Give it a go (pun intended). While I didn’t like this friend’s assumptions, I wouldn’t put it past my mom to work miracles. Like when I told my mom the kids will definitely not eat broccoli, by the end of the day my mom had Elizabeth at least tolerating broccoli while Katherine and Wil were now proclaiming broccoli their favorite food. So I said, “Great! Have at it!”

A few hours into the start of their potty-training weekend my mom phoned me, laughing and proclaimed, “I call Uncle!”

Some things take time. They just do. Not everyone is going to understand that process, and sometimes we may not even understand the process ourselves. We all have our own paths to walk at our own paces. But, at least by stopping every once in awhile, we can get to know each other a little better. Taking a moment to find common ground, create a little understanding, share a smile, toss up a high-five, form a bond, and maybe even a lasting friendship. In the end, when we look back, we’ll see those are the parts of life that were always worth the wait.

Our Friends With Down Syndrome are Joy Spreaders. Just Because.

There are so many stressed faces out there. People cutting each other off to get there first because their agenda is more important. Grumbling waiting in line at the store. Arguing over who had less sleep. What a silly thing to want to win the battle on! That said, I have no idea what these people are going through. Some struggles are all too real. But in some respects, especially in very stressful times, I wish we could all find it in our hearts to lighten up a little. To focus on a slice of gratitude, no matter how small. I do my part to flash a smile just because. And I’m always very thankful for the people that lighten my day when I need it. A simple smile in passing, a friendly conversation in the grocery line, a stranger holding the door open; little reminders to me how many things there are to be grateful for. But, somehow, someway, when Wil is with me on these public outings, he brings gratitude to a higher level just with his presence. He notices small things, and I think that’s his secret. He lives life in a constant state of awe. The things we barely see anymore because we see them every day are always made anew with him. His joy is raw, his feelings authentic. His emotions are so refreshingly open and real, and that is what makes him so darn infectious. (When Wil eats ice cream or a chocolate donut, he says, “mmmmm” with every bite. He always says, “please,” “thank you,” “you are welcome,” and he means it.)

When I go to the coffee shop or to the grocery store, basically anywhere with Wil, he’s like a joy spreader and he doesn’t even need to smile (though he usually does). It’s something about the way he holds himself, or maybe even the energy surrounding him. Whatever it is, it’s like a magic happy-making force. Immediately upon seeing him, strangers completely lighten up. Frowns turn around and I feel the surrounding energy open and brighten. There really is something magical about our friends with Down syndrome.
Sure, Wil needs extra care but I would never, ever qualify this as a burden. Though I’m raising him to be independent, there is a part of me that secretly hopes he can live with me forever. He is a happy-happy-joy-joy spreader. If you tell Wil life is not butterflies and rainbows, he will go out tirelessly looking for them to prove you wrong. He focuses on what can be over what can’t. Not because someone told him to, it’s just what he prefers to do. Sure, we have our stubborn I-don’t-want-to-so-I’m-going-to-sit-right-here-forever-and-not-budge times. I’m not saying he is perfect. I’m just saying life is really, really good with him around.
It’s quite ironic how Down syndrome is seen as a burden when I see how easily Wil’s presence lifts burdens on a day-to-day basis.
Life is not easy in this politically-charged, fast-paced, high-wired social media driven climate. We tend to quickly and easily shut down another’s belief system different than our own and be in such a hurry we never notice things around us. Wil is an example of how beautiful being just who you are with what you have right now is. There is no right or wrong here, there is only the universal sight of kindness and joy. Loving what you love, seeing the old in a new light, sharing a smile just because, and when there are no rainbows or butterflies in sight, making a way to find them. P.S. If you were wondering Wil’s political stance, he remains firm in his choice of Doc McStuffins for president.

When you forget your smile, lose your patience, or can’t seem to find a slice of gratitude, remember Wil’s to regain yours. And then the next best thing to do is to share your smile with someone else. Just because.

Beautiful Wil

REEEEAAALY Dance!

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Wil loves music. Last night as we were cleaning up a big dinner with family, Wil brought his CD player into the kitchen, propped it up on the island and asked me to help him plug it in. After I plugged it in, I went on to clean dishes. He put in his Music Together CD, and forwarded it to the song he wanted to hear, “Play the Drum.”

“Mom, play the drums!” He was standing up patting his hands on the kitchen stool seat. I walked over and played the kitchen stool drum with him.

After the song was over, I went back to the dishes while Wil shuffled through the other songs on the CD. He stopped on “Wiggle.”

“Mom, dance!” He said. I wiggled to the song while drying the dishes.

“No, REEEEAAALY dance!”

I set down the dishes, held his hands, and we wiggled our hearts away in the middle of the kitchen. With Wil’s low muscle tone, he doesn’t bend his knees when he dances, so when he wiggles, he does this cute, little bend over, shake his butt thing. Cracks me up every time!

I’m really good at multi-tasking. Heck, what parent isn’t? I can’t remember the last time I simply brushed my teeth. With one free hand I can get a kid dressed, make breakfast, clean a counter or find that thing the kids lost and need right now. As amazing as we parents are at getting sh*t done, single-handedly, I believe sometimes we are still missing something. We have checked so much off of our list, how can there possibly be a void? In my experience, I would answer that the moment is not whole. Rather, it is divided up into many multiple, varying fractions of a whole so it appears to be full, but there are still many small empty spaces.

Wil lives his moments in whole. He assigns special value to all of his moments. Nothing is broken down into a lesser or smaller fraction. The flight of a bumble bee is always worth stopping and observing. He literally stops to smell the flowers. “Mom, mmmm, smell this one!” He finds something new in every moment because he is fully living in it. When you live like that, jaded or bored simply can not exist. Each time it’s a new and exciting experience.

I love that Wil never lets me do things half-way. I love that he lives life whole and he brings me and anyone who is around into his world. I see things new through his eyes. Though he is 11 years old, he has not grown jaded or bored of these things, and I don’t think he ever will. I love to be reminded how cool blowing bubbles is, and again contemplate the impressive aerodynamics of bumble bees. Though my natural tendency is to live life in multiple fractions, I’m so thankful I have someone in my life that will pull me out of my multi-dimensional life. Not just kinda half-way, but REEEEAAALY live life. whole.

CAN I HAVE A RE-DO?

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I’ve read you can’t “make-up” runs, and as such, you can’t have a re-do on a bad day. While that may be true physically, mentally I would argue that point.

I ran hard in an Orange Theory class, which was awesome! I was running next to two friends and we had a blast trying to beat each other in miles. As such, my outdoor run later that day suffered. It was 80 degrees which I’m not fully acclimated to yet with our very chilly spring. I chalked that poor run up to tired legs from running hard in class, the heat I’m not acclimated to yet, and blah-blah-blah.

Some runs I can chalk up as crappy ones and move on. Just like certain days when things don’t go right. They simply are what they are sometimes. But this run just kept nagging at me. Yesterday, I ran 8.1 in the early morning, it felt great, so that was good, I felt redeemed. But that bad run still was like a kid kicking the back of my seat on a plane. I tried to ignore it but it just kept on and on. Yesterday afternoon I had a window to get 5 more miles in. I took that opportunity, though it only left me 10 minutes to shower and get back out the door. The 5 miles felt great, I took a quick cold shower to cool off, dry-shampoo, ponytail, BOOM good-to-go!! I felt like I was winning all the rest of the day into today. I like to do that after rough days, too. I ALWAYS schedule time to work out on a dark, rainy day, or after a particularly tough day. I do something healthy that makes me feel good and energized. Life is short, and as I get older, the reality of that fact becomes more and more apparent. We can’t just take life as it comes to us. We have to CREATE time.

There is always time for things we must do. Always. Time to run is created, not just easily granted. Making that time is not something many people do, but we don’t have to be like most people. We can make things happen rather than waiting for things to happen to us. And the crazy part is, you get called crazy for doing that! Ahh well, but we know the secret. This type of perspective of ours adds so much quality to life. So let them call you crazy as you live your high-octane life!

So while I may not have “made-up” for that poor run or off-day, I now feel ahead of the game. Ahead of the game because I made that time happen, I didn’t just let time happen to me. Because when I feel things aren’t right, I know I have the ability to make them better.

While I can not be sure if I physically made up for that poor run, and can not re-do an off day, mentally I feel powerful making a change. Adding in a run or finding a way to make the next day better. I feel strong. I KNOW I can make changes where they NEED to happen. KAPOW! Now off for some Friday speed work!

Be the change you want to see in the world, Friends!!