Tag Archives: life with Jon

Happy New Year Jon!

I started out the New Year doing what I do most, hanging out with Jon.

He spent the afternoon in our bathroom, taking a bath, shaving and getting dressed.

About an hour before Mike and I were supposed to be leaving for the 9pm to midnight New Year Eve Celebration service at our church, Jon’s caregiver called out sick.

By then, Jon was clean and shiny and wanting to go out. What to do? Pastor Mike sorta’ had to be there and I really didn’t want to spend the evening home alone.

Jon had gone out the door and was in the car so I decided, with great hesitation, to try to take him to church.

Here’s how the evening went:

The first hour we were in Mike’s office while Jon snooped around and made goofy faces for my iPad camera.

imageOnce we left there, he walked the entire hallway that perimeters the sanctuary until we were back where we started. He only slightly nodded his head at one person we met along the way, even though many acknowledged him.

He decided to walk the length of the hallway again and head up the balcony stairs. As I followed, I silently hoped he would sit down in the back row for a while. No way, he got a glimpse of all the people, heard the loud music and headed right back down the stairs.

We left the church building and went across the parking lot to the school and spent the rest of the evening in the gym. Jon shot hoops with an almost airless ball he found hanging around on the stage. But it was quiet in there and he had the whole place to himself, so he was happy.image

Very happy. Singing Christmas Carols out loud, while shooting the airless ball at the hoop, happy.

On the way out of the gym, he stopped at the hall vending machine to buy a bag of chips.

We returned home at 12:04 am, 2014, to colorful fireworks exploding over the far side of the lake behind our house.

I’ve decided Jon would be much happier going to church after it’s over.

Me…well…I missed the whole event last night but I got to hear my happy son sing. That doesn’t happen very often.

Guess it was worth it.

Happy New Year Jon!

Confessions of an Imperfect Mom

I yelled at my son last night. EX34C_C_YellingLady

I’m not a screamer, never have been. After growing up in a home of constant yelling, I vowed that I would not be that wife or mom.

But on rare occasions that vow hits an expiration date and this Jesus loving, pastor’s wife, overtime mom – YELLS! Yep, that’s right. Now you know (sorry to disappoint all those who tell me I’m the most patient person in the world).

Jon wanted to ride along to my chiropractor appointment yesterday afternoon. He patiently waited for me in the car and then we headed to one of his favorite hangouts – McD’s and the golden arches.

We ordered and settled in a booth at the back of the dining room. For a long while I preoccupied myself with my laptop, doing some reading and working on some writing, until I started feeling sleepy and decided to check the time.

If you’re a habitual reader of my adventures with Jon, you know that he is an extremely slow (among other things) eater. I’m not talking about regular slow or even irregular slow but the kind of slow that can get you top honors in the Guinness World Book of Records.

I couldn’t believe it, it was midnight! We’d been there for six hours. No wonder my eyes were shutting.

“Jon,” I said, “we need to leave now. We’ve been here too long and I’m falling asleep. I’ll throw away the trash. Please get your things together, and let’s get out of here.”

Unfortunately, Jon wanted to stay. The next twenty minutes consisted of various forms of me insisting and him resisting.

He wouldn’t get up at first. When he finally did, he tried bolting to the front of the building but I blocked him. With a half full cup of caramel latte in one hand and a partially eaten burger in the other, he went out the side door and started down the sidewalk in the opposite direction of where the car was parked.

I went after him and eventually herded him to the car, opened the door and very firmly instructed him to get in.

At this point, I so wanted to be home and Jon was feeling cornered and angry.

He bent over the seat and slammed his caramel latte into the center console cup holder so hard it exploded like a volcano all over the inside of the car. Sticky brown liquid dripped from the dash, down the side of the console onto the floor, ran inside the crevices of the console and splattered all over both front seats.

It was right there that I lost it. I exploded, just like that drink.

I put my hand on Jon’s shoulder, pushed him into the car and slammed the door.

Then he listened to hot lava erupt from my mouth most of the way home.

Today, the emotion of that moment has faded and I’m aware of my inappropriate reaction. I have apologized to him.

Jon doesn’t possess the ability to realize how his actions affect those around him so he won’t apologize in return. He never does. 

Down syndrome limits some of his cognitive ability and autism doesn’t allow him to see past himself and into another’s heart. I know there will be no words or hugs from my son.

But none of that matters. I apologized to him because that is how relationships work, because I love him, and regardless of how frustrating his behaviors can be, because it’s the right thing to do.

God doesn’t ask perfect people to do His work of loving others, only willing hearts are needed. I have learned to quickly forgive and ask for forgiveness (whether it is granted or not) and move on.

Jon may push my buttons once in a while, but more importantly, I know how to push the Mercy reset button every morning, because God’s unending mercies, faithfulness and love are what Jon and I count on to bring us through another day of our unusual life together.

Lamentations 3:22-23 (ESV) “The steadfast love of the Lord never ceases;his mercies never come to an end; they are new every morning; great is your faithfulness.”

 

Jon-a-tized

barber_poleLast week Jon had a guy spa day, sort of. After nearly a month of not wanting to go anywhere, he was treated to a haircut, shave and manicure and came back home looking polished and handsome.

I’ve been taking him to the same barbershop for a while. All the employees there know him and are wonderfully patient with his moods, quirks and slow pace.

The receptionist knows I don’t mind waiting and fits him in around appointments if necessary since it can take up to an hour to get him inside the shop and settled in a chair.

I have to admit to having days when I’m tired of explaining Jon to people so it’s comforting to go back to a place where he’s already understood. Everyone just does their thing until Jon’s ready and no one freaks out because he’s messing up the schedule.

There was a new receptionist behind the counter this visit which caused me to sigh internally as I came through the door. I knew I’d have explaining to do…again.

Jon was still out by the car fooling with the door handle, so she looked at me oddly. This was a barbershop after all.

Me: “Hi. My son, Jon, needs a haircut today.”

Her: “OK,” looking around, “so where is he?”

Me: “He’s out there.” I point to the parking lot.

Her: “Is he coming in?”

Me: “Eventually. He moves pretty slow. He has Down syndrome and autism.”

Her: “Is he OK out there by himself? Should I go get him?”

Me: (Internal sighing and so wanting to do some eye rolling) “He’s fine. I’m watching him from here.”

Her: “How old is he.”

Me: “33”

Her: “Wow. You’ve been doing this a long time then?”

Me: “Yeah.”

Her: “Well, OK let me check. Both barbers have appointments so we won’t be able to fit him in until 12:30.”

Me: “That’s alright. He won’t be ready to sit down until then anyway…maybe.”

Her: “Really? That’s over an hour from now.” She continued staring at the computer screen, fussing over appointments and schedules and how to fit Jon in.

She didn’t get it. As one of my good friends likes to say, she hadn’t been ‘Jon-a-tized’ yet.

Being Jon-a-tized is defined as the state of being educated and familiar with the way Jon does life until you accept him for who he is and how his existence in your life (even for limited time periods) affects you.

Everyone who comes into contact with Jon at any level of interaction is being Jon-a-tized.

He shuffled through the door about fifteen minutes later and headed straight for the bathroom. He was in there for nearly thirty minutes.

I was sitting on a stool underneath a huge flat screen TV, attempting to ignore some sports anchor rambling on endlessly about a football player and reading a book on my Kindle app, when the receptionist walked by with a broom.

“He’s been in there a long time, is he OK?”

I smiled at her. “He’s fine.”

“I guess I see what you mean…about him.” She started sweeping hair into a small pile.

Jon did get a hair cut and shave. We had lunch in the Japanese Steakhouse next door and then went two doors down from there and had his nails clipped and cleaned.

In seven hours we managed to get a receptionist, a restaurant server and a nail technician with very broken English somewhat Jon-a-tized.

All in all, it was a pretty good day.

 

 

Jon’s Organized Disorder

enter-at-your-own-riskJon has a dresser with no clothes in it, a book shelf with very few books on it, storage boxes for his DVDs that are filled with playing cards, string, sticks, old AA batteries (and other unrecognizable items), stuffed animals that are supposed to be in designated crates and a cabinet for his old VHS movies with all the shelves removed.

The shelves are on the floor and his videos are stacked on top of them.

DVDs and videos are piled on the floor like towers, here and there. Stuffed animals lie in wait to attack and the paper paraphernalia he collects is scattered everywhere: old mail, newspapers, ad flyers and catalogs removed from the recycle bin in the garage.

While my motto for home organization is, ‘A place for everything and everything in its place,’ Jon prefers the motto, ‘Everything all over the place.’

His favorite storage area is the floor. Walking through his room is like navigating an obstacle course. One misstep and either you or a teetering pile of…something…can come crashing down.

Even though it’s scary, it is necessary to venture into Jon’s room with the vacuum cleaner.

Since there’s no way to vacuum around his carefully stacked piles, everything has to be picked up. It takes close to an hour to empty the floor of its contents.

The clothes go back in the dresser.

The books go back on the shelf.

The DVDs go back in their storage boxes.

The shelves go back in the cabinet along with the videos.

The mountains of paper are thrown away.

The floor is clean and cleared for proceeding without fear of tripping, attack or injury.

And the room looks wonderfully neat and organized.

Within twenty four hours everything is back on the floor in the exact same place.

I’ve been fighting this silly battle a long time and there’s no winning. Some things just have to be accepted as they are.

So I’ve decided to close Jon’s bedroom door and get on with life.

We’re both so much happier.

 

Jon and the Disappearing Toilet Bowl Brushes

I don’t get Jon’s fascination for toilet bowl brushes but they keep vanishing.

Seems I’m always in the dollar store buying another one.

I have no idea where they go. Other than it’s proper use, what would a person do with a bowl brush?

The most recent one I bought was cradled in a white bowl shaped container. With a wish and a prayer that it might work, I printed a large Sharpie marker message on opposite sides,

“Please do not take! Need this for toilet cleaning.”image

It stayed under Jon’s bathroom sink longer than any previous but a few days ago when I went in there to clean it was missing. After looking around and not finding it, I retrieved a brush from another bathroom to get the job done.

Sunday afternoon Jon came out of his room with bags packed – a small computer bag on wheels and a plastic grocery bag stuffed to bursting.

He went out on the pool deck, parked them in the corner by the screen door and came back in the house, was distracted by something else and forgot they were out there.

So did I, until Monday night.

Mike couldn’t find his iPad and when he went in Jon’s room to look for it, he discovered Jon’s iPad was missing.

Mike came back through the kitchen, his own iPad in hand.

“Do you know where Jon’s iPad is? it’s not in his room. That’s probably why he took mine.”

“No, I have no idea where it would be.”

As I was answering, I immediately remembered the bags left outside, and it was pouring down rain and had been for about ten minutes!

I shot through the kitchen like the house was on fire. “Oh no! I bet it’s outside!

Mike watched me run to the pool deck into the downpour and return with Jon’s dripping wet bags.

We found his iPad and the toilet bowl brush squished along side a bottle of mouthwash, a toothbrush, a shower squeegee, his karate jacket, a roll of scotch tape, a pair of binoculars, the remote to his TV, a few of his favorite DVDs, and several other miscellaneous items.

I don’t know where he thought he was going.

He hadn’t packed a single pair of underwear but where ever it was…at least he was planning on having a clean toilet when he arrived.

 

 

 

Flying With Jon-Why I Don’t

People frequently ask why I don’t bring Jon along when I travel.

image

First of all, I’m not a huge fan of airplanes or anything related to them. The entire process of flight, including airports and all that goes on inside them, irritates me, but that is only one reason why adding my son to the flying equation is not the best plan.

About five years ago I decided to take a summer trip to Maine to visit friends.

These friends are considered family in every way and are ‘adopted’ grandparents to our boys. Jon adores them so I decided to bring him along. It was the first time I’d flown alone with him in a long time.

By some miracle we arrived at the airport in plenty of time to get through security and to our gate. I checked our luggage and had a shoulder bag and a small backpack for myself and a larger one for Jon to carry on. I requested pre-board given Jon’s tendency to freeze up when jostled or rushed in a crowd.

The security line was a disaster. Jon’s methodical slowness held everyone up.

He didn’t want to take his shoes off and his pockets, which I had made certain were empty when leaving the house, were full of the random items he removed from his bag on the way to the airport; sticks, string, cards, small toys, metal objects that set off alarms and a whole pile of whatnots that are important only to him.

The more everyone tried to hurry him the more resistant he became and before long went into his classic, scowling ‘freeze’ mode, which interpreted means, “I’m upset, I’m not moving and you won’t make me.”

We were finally pulled out of line and an attempt was made to pat him down. My warnings to the TSA folks about his aversion to being touched fell on deaf ears.

After a full thirty minutes or more of this frustration, it was finally determined Jon was not a terrorist, just a grumpy dude. He was waned, got his shoes back on, retrieved his precious, miscellaneous trinkets that had been scrutinized like terrorist tools and we were on our way to the gate.

Very slo..o..o..o..w..ly of course.

We stopped at the food court to purchase a meal and drink. There had been no time for breakfast before leaving the house and food would help keep Jon preoccupied during the flight.

Much time had already been used up getting through security so I hurried Jon as best I could, at turtle speed, toward the gate.

I could see the gate on the horizon. We were almost there! Relief flooded through me.

Suddenly Jon dropped his backpack at my feet and shuffled to the right, disappearing into the men’s restroom.

With a sigh and my foot, I slid his backpack to the wall. Saddled with all the carry-ons and a bag full of McDonalds including an oversized, wilting drink cup, I leaned against the wall to wait.

I waited…checked the time and waited…checked the time again and waited.

Twenty minutes had gone by! Then thirty!

I asked several men going in the restroom to check on him for me and “Please tell him to hurry up.”

Each one came back out to report that Jon’s feet were still visible under the locked stall door and my request had been rewarded with silence.

More time passed and I was getting antsy, downright anxious, when I heard the call for our plane to commence boarding.

Oh no!

We were NOT going to miss this plane!

Leaving our bags unattended, I walked to the entrance of the men’s room and yelled,

“Zip it up guys, I’m coming in. Gotta’ get my son outa’ here before we miss our flight!”

I proceeded into the restroom at tornado speed past a wall full of startled males and as I breezed by, keeping my eyes glued to Jon’s feet beneath the handicap stall door, announced,

“Sorry guys, got a husband and two sons, including this one I have to get out of here. Ain’t nothing in here I haven’t seen before.”

I banged on the stall door.

“Jon the plane is boarding. You have to come NOW!”

No answer. His feet moved to the back of the stall.

“Jon we are going to miss this plane if you don’t come out RIGHT NOW.”

My voice was rising in exponential decibels along with my blood pressure.

Silence.

The door remained locked.

Down I went on all fours and crawled underneath, while the few men who hadn’t fled the room, gawked at the spectacle like one would watch a car wreck.

I unlocked the stall door and grabbed Jon by the collar. He flailed and stomped trying to get away from me as I moved to his rear and booted his behind with my knee, then steered him out to where I’d left the carry-on bags.

Remarkably everything was right where I’d left it.

Jon was too upset to help me carry anything and I was too riled up to care. I threw all the bags over my shoulders, grabbed his lunch and drink and herded him like a runaway sheep to the waiting plane.

By the time I got Jon settled into his seat and collapsed into mine, he was madder than a cornered hornet and I was near tears and so drained the only place I wanted to go was home.

Two weeks later, following more crazy Jon scenarios that took place during our visit, the return flight was only slightly less stressful.

I wanted so much for Jon and I to have great time together on that trip but came home exhausted and told Mike I was never traveling alone with Jon again.

And I haven’t.

What was I thinking?

It stands to reason that a guy who takes four hours to eat two slices of pizza might have a hard time adhering to an airline’s schedule.

In matters of sanity, I can’t allow my heart to win out over reason.

As much as I love spending time with my son, I’ve figured out some activities just aren’t worth the extra stress and tension they create.

Traveling is one of them.

 

 

 

 

 

It’s In Jon’s Room!

In the late 1990s a children’s fantasy movie, The Borrowers, was released.   

The story, set in a home in England, features a family of tiny people who secretly live behind the walls and under the floor and ‘borrow’ items from the humans also living there. 

 I’m convinced they are real and live in our house. 

A few days ago, I reached for the broom I keep in the linen closet of the master bath, so I could sweep the floor after I dried my hair.

Gone.

I needed my kitchen scissors to open a bag of almonds.

Missing.

I looked in the drawer for the cheese slicer to serve some cheese and crackers with lunch.

Not there.

Useful items grow legs and disappear around here regularly.

A friend had been missing her reading glasses for several months. 

While she was visiting one day, Jon came out of his room with a pair of glasses on his head. 

She points to Jon and says to me, “Hey, those look familiar, are they yours?”

“No,” I reply, “they’re not mine. I don’t know where they came from.”

Surprise, surprise! They were hers.

I find random items in Jon’s room all the time:  the wooden dowel handle that screws into the toilet bowl plunger, bills that need to be paid,  blank checks from our checkbook, a makeup brush that goes with my blush, the manual for the car from the glove box, Mike’s neckties from our closet and various kitchen utensils, to name just a few.

Recently I invited some mom’s and their kids over for a swim day in our pool. There were keys, sunglasses, phones and open tote bags full of things scattered around everywhere. 

Jon decided to help himself to two pair of kids flip flops that weren’t any bigger than his hand. It’s not like they would fit him and he’s always hated that thingy that goes between the toes. 

Who knows what goes on in that noggin of his? 

During David’s high school graduation, each graduate was encouraged to write a one-line acknowledgement to their parent(s), family or friends which was placed in a PowerPoint presentation and projected on several large screens during part of the ceremony. 

Sweet sentiments scrolled across the screen accompanied by the student’s name who penned them:

“Thanks Mom and Dad for all your support,” 

“I love you Grandma, you’re the best,” 

“Couldn’t have made it through without you, Friend.” 

“God bless you Teacher, for all you did for me.”

The crowd ooo-ed and awww-ed as we watched the quotes marquee across the screen and waited for the one meant for us. 

 Finally David’s popped onto the screen.

“It’s in Jon’s room!” was all it read, in a big, bold font.

As the crowd mumbled in bewilderment all around us, we burst into fits of laughter. 

For all the years David couldn’t find the essay he just wrote, homework and test papers, notebooks, pencils, pens, assignment books and algebra calculators, the answer to the question…

“OK, where is my________?”

…was always, “Go look in Jon’s room.”

The answer to that question has never changed.

If you come for a visit and are missing a few things when you return home, we know the first place to look.

By the way, I found the stick to my broom…guess where…? 

Jon’s room.

And the broom itself… behind the recliner in our bedroom.

Like I said…who knows?