Life

Upgrading the Lens

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I wonder sometimes, do we view individuals with special needs as angelic, more so than our typical selves, because we do not apply the same societal pressures to individuals with special needs as we do to ourselves?

We see individuals with special needs for who they are.
For the love that they share.
For the hugs that they give.
Every achievement we celebrate for the dedication put in. But the achievement is not attached to the value of their person. They are loved for the whole of who they are regardless.
I wonder what kind of world this would be if we viewed ourselves through the same lens?

And conversely, discrimination exists by those who view individuals with special needs as less than because they only see the world through achievement. They disregard the love, the dedication, the whole of the person for a top grade or an occupation. I wonder what kind of world this would be if this view were broadened, expanded to see the whole of a person.

I wish I could say I always looked through the lens with the broader view. I can not make that claim. Life experiences have allowed me to upgrade my choice. And now that I have upgraded, I realize I’ve had the choice all along. It wasn’t the upgrade that cost me. Rather it was the narrower view.

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Remembering Leading Hands on the Journey to Acceptance

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Reading a passage on a special needs social media page, I came across a sentence about our kids’ first friends being their therapists. Tears immediately flowed with that sentence. Have you ever found your emotions processing words faster than your intellect? My heart felt the words before their literal meaning reached my brain.

Then when my brain kicked in, I thought, “here I am, 13 years into this journey, fully embracing this journey, and still find myself crying at the drop of a hat over an early memory.” No matter where you are in your journey of acceptance, even if you have come full circle, you never, ever forget your early days of passage into what you now embrace.

In the early days, I didn’t know many people who knew what this life was. That is likely true for many. Those around you either don’t know what to say, or try to console you. So, those first steps are full of so many questions, but you are unsure where to direct them at that point. The therapists, for many of us, are those first people to ask real questions of. The therapists, for many of us, are our first solid signs of hope. The therapists, for many of us, give us more than words. They give with their actions.

Wil’s first therapists were on the side of acceptance I valiantly wanted to find my way to. In the way they were there for Wil, they were also opening the passage to me. I could ask very real and upfront questions, and they responded with very real and upfront answers. They were people in the know. And they cared. I may not have been there of my choosing, but they were there because this was their chosen life’s work. That is some powerful stuff.

Wil’s therapists moved Wil’s limbs and motivated Wil to learn in their knowing ways. I watched the ease in which they did this. Then I would try. I immediately failed. What looked so easy for them was so very new to me. They patiently showed me again and again. And again and again. In the process, I learned the beauty of patience–that not all things come when we want them, but in their own time. As Wil was learning, though he took many trys, there would be small advances. Advances I never would have noticed if I already knew what to do. I learned there is beauty in the space between the advances. I learned there is never an ordinary moment. What we call ordinary means we are glancing over too quickly. I learned that not everything that comes to us is natural–we need to go through the process to acquire our second nature.

I learned my second nature through Wil’s therapists. I learned patience through Wil’s therapists. I learned to pay attention to the space between the advances with Wil’s therapists. I crossed the bridge to acceptance by the leading hands of the therapists.

Though I have come full circle to acceptance, within that circle there are still the broken parts I pieced together to create the whole. The emotions my heart registers before my brain, never forgot those broken parts. They are the building blocks that I ever so learningly, patiently, lovingly and dedicately worked to link together with the leading and helping hands of Wil’s first therapists, Wil’s first friends, on this journey.

Thank you, always for helping put those pieces together Wil’s very first therapists:
Theresa, Janet, Cathy & Shelly

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Timberlake vs. Timbuktu

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Wil had a quiz to study for last night. We decided together that he would study while Katherine was at CrossFit. If Wil comes along to CrossFit for a task such as studying, we typically go to Bigby Coffee and he gets a hot chocolate with sprinkles. After a few sips, some silliness and conversation, we get down to the business at hand. Last night he said no to Bigby.

“Where do you want to go?”

“Hmmm, don’t know.”

“How about McDonalds. You can get a chocolate shake, then we’ll study for your quiz.”

“Ok.”

When we arrived at McDonalds, we had an hour until we needed to be back to pick up Katherine. Wil made a quick scan of the play area. It was empty.

He tugged on my arm. “Mom, in there.”

“Ok, let’s order your shake first.” We walked up to the kiosk. He squinted.

“Put on your glasses, Wil.”

“No.”

“Here, just try.” I handed his glasses to him.

“Hey, I can see it.”

“Um, yeah silly. That’s why we like you to wear your glasses. You can see so much better.” He wears glasses for reading and occupational therapy, other than that he has no interest in them.

Wil made his chocolate shake order through the kiosk, reading every word on the kiosk proudly out loud.

“Great job, Bud.”

After the order was complete, he pulled off his glasses, and headed toward the play structure, his arm extended back to me with the glasses.

After playing in the play structure with lots of “look at me’s!” two other young boys entered. The increased noise level was enough for Wil. He made a quick exit. I followed him with his shake. He picked a table in the main area and we took a seat.

“Here are your glassesWil. Let’s do a little studying now.”

The subject of the quiz was the Empire of Ghana. His teacher condensed the lesson for him. After we got through the definition of Mali, the Niger River and Mansa Musa, I asked him, “What was the major trading city when Mali was at the height of it’s power?”

“Timberlake!”

“Wil, Justin Timberlake is a singer. He’s the voice of Branch in Trolls.”

“I see your true colors shining through, I see your true colors and that’s why I love you…”

“You love Trolls.”

“You?”

“Yes, I love Trolls too, Wil. And Justin Timberlake is a really good singer, and dancer. But the answer isn’t Timberlake. Let’s try again. What’s the major trading city?”

“Timberlake!”

“Wil.”

“Timberlake!”

“Dude, come on.”

“Timberlake!”

“Ok, it’s Timbuktu. Can you at least say Timbuktu for me?”

“Timberlake!”

“You are so silly. Do you want to watch a Timberlake video?”

“Yes, Can’t Stop the Feeling.”

We watched Can’t Stop the Feeling and True Colors. Then we got back to the quiz. I jumped ahead to the next definitions, we got through those fairly smoothly with the exception of mosque. He looked hard at the word and came out with “message.”

“Wil, good try, it’s mosque.”

“MosKE.”

“That’s right, say it again.”

“Message.”

“Honey, you just had it right. Mosque. Say it again. Mosque.”

“MosKE.”

“Good, again.”

“MosKE.”

“Good, ten times fast.”

“MosKE, MosKE, MosKE, MosKE, Ugh, ok Mom.”

“You got it.”

Then circled back to Timbuktu.

“Ok, Wil, what was the major trading city?”

“Timberlake!”

“Can you at least tell me you will answer Timbuktu on the quiz?”

“Timberlake!”

Play, Pray and Don’t Say Beer at School

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I ran into Wil’s room and started cheering, “It’s Friday, it’s Friday, it’s Friday!”

He rolled over, giggled, and pulled the covers over his head. I put my hands on his back, and pushed down, then released, pushed down, released, over and again, bouncing him on his bed, singing, “It’s Friday, it’s Friday, it’s Friday!”

He laughed, craned his head up to look at me and said, “Ok, ok, ok, Mom, just calm down.”

“I will if you get out of bed.”

Still laying on his stomach, he scrunched his body up, his tushy sticking up in the air. I gave it a swat and said, “Get your little booty out of bed.”

“Look Mom, I’m an inch worm” and he wiggled on the bed.

“You are a very cute inch worm. And you are going to be a late inch worm if you don’t get dressed soon.”

“Ok, Mom, hugs.” He sat up and reached out for a hug. As I leaned in to give him a hug, he bear hugged me. I lifted him up and out of bed. He curled up his legs, so his feet wouldn’t touch the floor. I felt my neck and back sinch up, and leaned him back over the bed.

“Dude, you are not little anymore. You can hurt Mommy doing that. Ok, up and at ’em!”

“Huuuuugs.” I hugged him again, then he laid back down in bed.

“Wil, up, up, up!”

“Oh, Mom, too much energy. Hugs.” I hugged him again, and pulled him up.

“Ok, Mom, go.”

“You promise to get dressed if I go?”

“Ugh, yes, mooooom.” From a playful inchworm into an irritated teenager in seconds.

We decided what he wanted for breakfast– “Mac n cheese?” “No.” “Sandwich?” “No.” “Eggs?” “No.” “Oatmeal?” “Yuck, Moooom.” “Ok, hot sandwich?” <pause> “Yes, and tomato soup.”

As I left his room to make his breakfast, I pulled the door almost shut, so I could peek through the crack to make sure he was getting dressed. After putting the sandwiches on the stove, I quietly walked up to his room and peeked in the crack of his door. He was talking to himself about his outfit. He always puts his pants on first, then his shirt. If I’m ever helping him get dressed after his swim lesson, and I forget this rule, he looks at me like I’m a crazy person, then says in a very matter of fact way, “Pants first, mom, then shirt.”

Wil always has a theme in mind when he gets dressed. On Monday, he emerged from his room, threw his hands up in the air and proclaimed, “Grey Power!” He, of course, had on a grey hooded sweatshirt with grey pants. He also happened to match the winter sky that day. I thought, that’s one way to make the most out of a grey day. Especially on a Monday. Unfortunately, even though that day started on a high, it ended on a low. His team and I weren’t sure of the triggers, but he refused to work in his afternoon classes and I picked him up after school rather then him taking the bus.

Today he walked out of his room with a Luke Bryan concert t-shirt his Aunt Carrie bought him. “Look at me, Mom!” (Last night watching Jeopardy, I said to Wil, “if they had Luke Bryan as a category, you would win.”

“Really, what?” He ran up to the television, mistaking my
comment for Jeopardy having a real time Luke Bryan category.

He yelled out, “Kill the Lights!” “Here’s to the Farmer!” “Strip it Down!” “M-O-V-E!” “Drink a Beer” then, under his breath, “No, don’t say that at school. Don’t say beer at school.”)

Wil sat down to eat the breakfast I made him–two warm ham, cheese and spinach sandwiches on whole wheat buns and bowl of tomato soup heated to a lukewarm temperature–he doesn’t like anything hot.

“Which shoes do you want today, black or brown?” This is always a consideration each morning and he enjoys making this choice. The black shoes are his tennis shoes, the brown are a little dressier. Today he chose brown, even though he wore sweatpants. His Luke Bryan shirt must have had him feeling fancy.

When it was time to go, he still had half of one of the sandwiches left and some soup. Occasionally this happens, I believe on purpose, because he wants to bring some of his breakfast to school. I put his sandwich in a baggie with a plastic spoon, and poured the remainder of the soup into a thermos.

He pulled on his backpack, grabbed his baggie and thermos and we were off. He sang Luke Bryan songs the entire way to school. (When I’m driving by myself, I can’t listen to a Luke Bryan song. It’s lackluster without Wil’s backup.)

When I brought the car to a stop in front of the school, Wil bolted out with a quick, “Bye, Mom” and in his low muscle tone way, he ran without much bend in his knees, moving slightly side to side, his backpack bouncing on his back, baggie and thermos in hand. I sent up a prayer for his good spirits to continue.

Every day is a process, with or without a playful start. It’s fun when kids are younger, but now Wil is 13 years old. In many ways I’m thankful for his continued youthful spirit, and in other ways the process gets tiring after so many years. His independence is growing in leaps and bounds, yet still, he requires lots of encouragement to get on with his day and with extracurricular activities. I’ve tried to rush him, and it backfires each time. In fact, a little reverse psychology can go a long way. I used to say, “Quick like a bunny!” but now I say, “Slow as a tortoise.” He’ll start slow, find it to be funny, then get on to the activity.

While a playful start doesn’t guarantee a good day, my own personal calculations show a sharp rise in success with a playful start. So I play the numbers, inch by inch, each and every day. Once he bolts out the car door, in the mix with many other kids and experiences, it’s anyone’s guess as to what may trigger him to turn the day upside down or flip it back around and land right side up. That’s when a good team at school and prayers come in handy.

Give us this day our daily hot sandwich and tomato soup, as we start our day in play, may we keep our day right side up, and remember not to say “beer” at school. Amen.

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Twist, turn, kick. Sputter. Smile.

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His swim instructor was showing him how to roll over from his stomach to his back in the water. He’d start, face down, floating, then twist himself around. As he made the twist, he’d flail slightly, body twisting hard, with a little kicking to get himself all the way around.

He’d pop his head to the surface, his clear-lensed wide-eyed goggles—he affectionately calls “Frog power” when he puts them on—showing wide eyes underneath. His breath sputtering, spitting out water. Then catching his breath, laying on his back, realizing he succeeded, a huge smile spread across his face.

Again, he’d twist, kick, turn his body around. Low muscle tone making the task challenging, his observing mom thankful for the important core strengthening that was happening. Again he surfaced, sputtering, eyes wide, spitting out water, catching his breath. Then the smile. Big. Proud.

Again, he’d twist, turn, kick. Sputter. Smile.

Again, again, again.

Each time, the twist would come a little quicker. The sputtering less. Soon, the smile was already there, shining underwater, revealed as he completed the turn and lay on his back. Floating.

And his observing mom found herself smiling too, thinking isn’t life just like that?

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Slippery Rocks Ahead!

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“Slippery rocks ahead!” It was a dark, pre-dawn August morning in Michigan’s Upper Peninsula. Headlamp lights bounced off the rocky trail. It had rained the night before, so the trail was slick. The jutting rocks and roots mixed with the elevation proved challenging without throwing in the darkness and slickness. Even though I had read about this trail and watched a video of the race, I was only partially prepared. Traversing the trail with my own feet was the only way to truly be in the know.

I have made no hidden remarks about puberty with Wil mixed with Down syndrome. I could have guessed what was ahead, I had read enough and prepared myself enough, but there are certain things you simply need to experience to fully be in the know. I talked to Wil’s teacher consultant for ideas in working with his new behaviors associated with puberty–she has worked with multiple children with multiple diagnoses. I noticed the first thing she did was ask questions. Lots and lots of questions. I respected that greatly. She wanted to know all about Wil and his behaviors. She didn’t make assumptions based on him having Down syndrome. Though she is someone “in the know”, it was important for her to know and understand Wil.

The other morning, Wil was being extremely willful. It took him a full 30 minutes to get out of bed and ready for school. The pattern continued through the day into the evening. He didn’t want to go to Katherine’s CrossFit class that night, but Elizabeth was at basketball, and Matt was out of town, so going to CrossFit was his only choice as he is not able to stay home alone at this point. Katherine and I finally convinced him to get in the car, with the promise of a stop at Bigby Coffee for a cup of hot chocolate with sprinkles. I took a deep breath when we got in the car, played some music, and all seemed to be going well. After dropping Katherine off at Crossfit, Wil and I headed to Bigby Coffee. I ordered his hot chocolate and he drank most of it. We shared a conversation, with a few pauses and prompting. When it was time to pick Katherine back up from CrossFit, he refused to leave. Again, with lots of prompting, I finally got him up and into the car. When we arrived home, he had some time to watch tv and then go to bed. Again, he refused. Thankfully, we didn’t have anywhere to go so I walked him to his bedroom and told him he could stay in there until he was ready to put on his pajamas. This is usually a successful tactic as it gives him time to unwind and feel back in control of his situation. It can take anywhere from 15 minutes to an hour. Well, it took an hour. By the time I got Wil into bed, I wanted to go to bed too I was so exhausted from the constant negotiations and patience required the entire day. Though I knew I would have fallen asleep the moment my head hit the pillow, I felt the need to unwind and feel back in control of my situation, too. So I sat down and read a book, as exhausted as I was, until I felt calmed down, then I went to bed. And indeed, I fell asleep the second my head hit the pillow.

When Matt returned to town, I told him about this experience. How the entire day, Wil had been willful. How I had tried to get him to communicate, but he was being obstinate with anything I did.

“Hmm, sounds like a teenager to me,” Matt said.

That next week, the kids had Friday and Monday off for President’s Day weekend. On Thursday morning, Wil popped out of bed singing, “Friday, Friday, Friday!”

“Actually Wil, it’s Thursday.” I replied.

“No, it’s Friday, Friday, Friday!” He continued singing.

“Huh, you know, you are right. In school days, this is your Friday. Hooray Friday, Friday, Friday!”

On the flip side, Tuesday was not so celebratory. After having Friday and Monday off, Wil was well out of his routine. He refused to get on the bus after school on Tuesday and even took off outside for a brief period. His teacher was on it, rallied him back in, and when I entered the school office to pick him up he was fairly cheerful, no doubt for his bout with fresh air and freedom.

“Wil, you were all excited to ride the bus home when I dropped you off for school this morning. What happened?”

“Mondays are hard, Mom,” he said. I almost said it was Tuesday, then caught myself. In school days, it was his Monday. And yes, I agree, Mondays can be hard.

Refusing the bus ride home on Mondays is more the rule than the exception. If I were to graph his week, it would be an upward slope. As the week goes on, he gets back into the groove of his routine, and though no day is smooth sailing, his days grow progressively smoother and more productive. Wil earns stars for doing work in each of his classes. Wil earned a mere 4 stars that Tuesday, but doubled that count by Thursday. On Friday he promised to uphold that double count of stars. And that he did. Friday, Friday, Friday!

When Wil was a baby, I read multiple books about Down syndrome. First books about babies with Down syndrome (which is an actual title of one of the books) up to books about teenagers and young adults with Down syndrome. I wanted to put myself in the know. I needed to put myself in the know. There were much too many unknowns in the distant future when I learned of Wil’s diagnosis. Reading books helped put me in the know–or so I thought. I really was only partially in the know. Because you don’t know what you don’t know until you do know. Now that I know, I know there is much more knowing to come.

When I trained for the 50-mile trail race in Michigan’s Upper Peninsula, I approached it quite similarly. I read as much as I could about ultramarathons. The terrain I was used to in the lower Peninsula was much different from what I would experience in the race. Where the race’s trail was rocky with steep elevation, the roads I was used to were sandy with rolling hills. I would also start the race in the dark. I wouldn’t be able to see what was ahead of me except for what was illuminated in the small, thin beam of my headlamp. I wanted to be in the know. But until I hit that trail with my own two feet, I was only partially in the know.

At the beginning of the race, we runners were all backed up along the single track trail in the dark pre-dawn with the calls of “Watch out, slippery rock ahead!” We made our way gingery, step-by-step-by-step, careful not to twist an ankle this early in the race. As the dawn spread, and the view of the trail opened up in front of us, we proceeded more confidently, and found the paces we had trained for. Even so, there were many surprises along the way. Along the shore of Lake Superior, I made good time. The ground was a soft bed of pine needles. I enjoyed the view, the soft footing and the flatter terrain under my feet. When I hit Hogback Mountain, I stopped and looked up at the tall climb. I had read about this part of the race, but now I was about to experience it. I was on hands and knees, climbing, crawling, scaling looking for the little orange flags stuck in a crevice, that led the way, so I wouldn’t make a wrong turn. I climbed next to others, and when we’d spy a flag we’d call out, “There’s the flag, this way!” And we’d creep and crawl until we found flatter footing and took off again.

As much as I value preparation, no one could have told me how it felt to know the soft bed of pine needles under my feet. Then, to come to an abrupt halt of a hard rock hands and knees climb, progressing at a snail’s pace, eyes peeled for a sign I was heading in the right direction–all the while knowing, if I made a wrong turn, I wouldn’t make the time cut-off, and will get pulled from the race I trained so hard for. As such, you can’t read about a child with Down syndrome’s behaviors and expect to know what exactly they are communicating without being able to ask questions specific to that child. You can’t know the free flow of milestones being hit, closely to on time, and then bam, a mountain to scale–seeking out any flash of orange to guide you on your way. You can’t know the patience it can take, and also to fully understand when that very patience breaks, until you’ve been through it yourself—all the while savoring your journey, no matter how confusing, exhausting, or exhilarating it may be. As prepared as we may believe we are, we don’t really know until we’ve traversed the path with our own two feet.

I have learned a lot from Wil, but Wil is not a lesson to be learned. Wil is not an object of advocacy. Wil is a 13-year-old boy. Wil has 47 chromosomes and Wil is also a teenager. Wil has tough Mondays and cheers on his Fridays, Fridays, Fridays! Wil has 4 star days and 8 star days. Wil’s week goes in an upward curve quite predictably, but what happens along that curve is anyone’s guess. Sometimes it’s a protest on the basement stairs and sometimes its as close to smooth sailing as he gets. Sometimes I can navigate the journey on my own, and sometimes it takes a team. What I know about Wil is what I know now. Preparation is key, and so is the reality that tomorrow is anyone’s guess.

The only advice I can offer up to this point is there are Slippery Rocks Ahead! I can’t tell you where until I cross them myself. But when you get there, who knows, the climate may have changed and you may sail right through. Keep your head up, always work toward an upward curve, and ask lots of questions. The little flash of orange is always there to lead the way, though you may need an entire team crawling, scaling and putting one hand and foot in front of the other to find it. Mondays are hard, even if is a Tuesday, and celebrate every Friday, Friday, Friday! even if it is a Thursday. Be weary of those who claim to know the answers–only those who ask questions truly seek the answer. Labels define us, and preparation prepares us, so we feel that we may know. And yet, each day is it’s own, and each of us is our own–so we only partially know. You don’t know what you don’t know until you do know. Once you do know, you can betcha it will change.

The Morning Wash

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This morning was a full-on 30 minute morning to get Wil out of bed and into the kitchen for breakfast. This is how it went:

“Wil, time to get up.”

“Hi Mom.”

“Good morning, Wil.”

“Good night, Mom.” He giggled and pulled the covers over his head.

“No, it’s good morning Wil.” I said as I pulled the covers back down.

“Good night, Mom.” He giggled and pulled the covers back over his head.

“Good morning, Wil.” I pulled the covers down. I gave him a hug while I lifted him up. “Do you want me to help you get dressed?”

“No, I do it.”

“Ok, it’s time to get dressed then. I’ll go make you breakfast.”

“Ok, Mom.” Then he plopped back down and pulled the covers over his head.

“Dude, you have to get up now. Chop chop!” I clapped my hands and he laughed.

“Oh, Mom. You are silly.” I did fast little claps near his face. He grabbed my hands, pulled me down and gave me a hug.

“You are sillier,” I said, hugging him back. I lifted him up to a seated position. “Ok, let’s go. So you don’t have a rushed breakfast.”

“Ok, Mom.”

“Here, I’ll get your underwear out for you, then you pick out your pants and shirt.” I set his underwear down on the bed next to him then headed to the doorway. I turned around and he was sitting there watching me. I knew he would lay right back down when I left.

“Dude, please, let’s go. You won’t have time for breakfast if you keep up this pace.”

“Ok, ok, ok.” He said. Convinced he would truly get up this time, I left the room and came back a few minutes later to check on him.

“Look, mom, I put my underwear on.” Wil was standing in the middle of his room, his pajama bottoms and top still on, but he had his fresh pair of underwear pulled up over his pajama bottoms. I knew laughing would slow things down even more but I couldn’t help it. I started cracking up then he started cracking up. Wil then danced around the room in his over-underwear.

“Wil, you are just too cute. That is funny. Ok, I’m sorry to end the party, but we are down to the wire here. Pretty please, let’s get dressed. With your underwear under your clothes.”

He danced around some more, then said, “Ok, Mom, go.” That meant he wanted privacy to get dressed. Progress.

Soon after, he walked into the kitchen. He had on pants and hoodie, with his underwear under. He sat down, and got right to business eating his breakfast. No need for convincing or coaxing there.

Some minutes are under, some are over, but it all evens out in the wash.

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