Author Archives: diane.connis@gmail.com

Hold or Fold? My Special Education, Lesson #2

A few years ago I realized that I was obsessing over Jon’s obsessions. decision

Take his room for example. At first glance it looks like a yard sale or maybe a cleaner version of a landfill. I’ve noticed a pattern to his clutter; he puts the same items back on the floor in the same piles and in the same place. You can read about that here.

Any time we go out, he first fills a bag (or bags) with little items: strings, sticks, old papers, napkins and small toys. Eventually, there are so many bags in the car I can’t find the back seat.

I prefer my car looking clean and spacious instead of  like a Sanford and Son road show. But I’ve decided that Jon feels better when his stuff is around him. So I let it slide, for a while. When I can’t stand it anymore, I carry everything back into the landfill – his room. Then we start all over again.

 When he showers, he lines all his supplies up very methodically, things he needs for bathing and things he doesn’t and you better not touch any of it.

Eating is a repeat. Food is placed strategically around him and after all the fussing he can wait up to an hour before taking a bite, while he draws or writes on napkins.

Some of his actions seem illogical and I don’t pretend to understand.  I’ve had to learn to overlook and accept much of his behavior for what it is. If I allowed his fixations to constantly frustrate and aggravate me, I’d be twitching in a corner by now.

Time has proved that Jon’s not going to change, so I have to. There’s no point or value in my locking horns with his obsessiveness. It only escalates, adding stress, misery and tension to an already unconventional situation.

Face it, some of the things we hang on to, whether they are opinions, beliefs, material goods, expectations of others or ourselves are not useful and in the long run don’t matter much, if at all. “Don’t sweat the small stuff” really applies here.

It’s the trivial, the little pebbles in the shoe, that can hinder. How much better is it to move around the petty obstacles and keep going?

Not everything is urgent and some things aren’t even important. Others are non-negotiable and so critical I need the grip and tenacity of a pit bull to hold them.

When I’m tired, frustrated or discouraged it’s easy to let slip those things that should remain.

Knowing when to hold on and when to let go requires wisdom, discernment, consistency and prayer.

It also requires change. I must be willing to adjust in areas where I’m too rigid or passive, or at least examine these and determine their validity.

Is this a battle I need to win? Is this an issue I should stand firm on? Sometimes the answer is yes. Very often it is no.

In all areas of life, prioritizing and simplifying, helps me live effectively and peacefully with myself and others.

And in doing so I discover, as time goes by that people, circumstances and inconvenience irritate me less. I’m certain I have my son to thank for some of that.

Philippians 4:6-7 “Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.”

Revelation 3:2 “Wake up, and strengthen what remains and is about to die, for I have not found your works complete in the sight of my God.”

It’s Not My Job To Fix Anyone – My Special Education, Lesson #1

Once I processed and accepted the surprise and disappointment of Jon’s initial diagnosis, I determined to help him be the most amazing person who ever had Down syndrome.

 

I knew if I worked hard enough, fought long enough, my son would be The One to WOW the world. He would be almost ‘normal’ if not one hundred percent. He would have the life I imagined for him – acceptance, friends, a girlfriend (or maybe a wife!), his own apartment, a career and a car to drive to work.

 

He might not become a neurosurgeon or The President, but most ‘normal’ people weren’t, so I could live with that.

 

Working tirelessly from birth through high school and beyond, I fought for services in every available arena of mainstreaming and special education and was even instrumental in spearheading a few improvements.

We accessed infant early intervention, integrated preschool, behavior assessments, speech and occupational therapy, reading programs, Special Olympics and work training programs.

 

I never missed an IEP (Individual Education Plan) school meeting and even home schooled for several years, burning long hours into the night, researching new ways to help Jon excel at learning.

 

Helping my son hit a high level of ability became my project and I was obsessed.

My attempts to ‘fix him’ and fit him into the life my imagination had designed for him, often hindered my enjoying him as my child, especially in those early years. When my friend’s toddlers said their first word, sat up, walked and potty trained on schedule and Jon didn’t, I was defeated and miserable.

Obviously I wasn’t doing enough and the mommy guilt was all encompassing.

 

Now he’s an adult and none of my imagined scenarios for Jon’s life have come to pass, even after all my years of worry and hard work. Of course, we never figured autism would be added to the equation, yet, there’s no apartment, car, career, girlfriend and few friends.

 

There’s mostly just me and Jon.

 

Somewhere in the mix of my many years of ‘Jon education’ and church ministry, dealing with all types of people, I figured something out – it’s not my job to fix people – especially if my “fixing” is more about what I want than what they want or actually need.

 

balloonThis has been a hard lesson to learn.

 

Only God knows what comprises the heart of a person. It’s His job to correct. Mine is to surrender to His work both in myself and others. While God is lovingly trying to align me,  I’m so busy with my attempts to straighten everyone else out that I can’t begin to see my own need.

 

My responsibility is simply to love. If that love requires helping another improve in some way then so be it, but never should it be about someone fitting my perception of what that should look like or what I think they should become.

 

It’s not about my attempts to line everyone up around me to my liking. Enjoying people simply for who they are sets me free from seeing them as a project or burdening relationships with my selfish agenda.

 

Though I’m certain I have more to discover here, learning to love my son for exactly who he is, not who I hoped he’d be, and letting go of my foolish attempts to change and control others has been one of the most liberating experiences of my life.

 

I’ve been surprised by the realization that freedom can come in unforeseen and unexpected ways and letting go has brought more internal peace and joy than I ever thought possible.

 

Jon, what a wonderful teacher you are!

  

“Everyone thinks of changing the world, but no one thinks of changing himself.” ~ Leo Tolstoy

 

“How can you say to your brother, ‘Let me take the speck out of your eye,’ when all the time there is a plank in your own eye?” Matthew 7:4

 

“So then, each of us will give an account of himself to God.” Romans 14:12 NIV

Why I’m Not A Role Model For Inspiration

inspiration-cover I started writing about our life with Jon approximately eight years ago

He finished school in 2002 and came home full time. Over the next few years he tried several full time and part time jobs but was continually ‘let go’. “He doesn’t stay on task without constant supervision,” we were told.  Then came the work centers and day programs, which he hated. The only thing we couldn’t try was moving him out into supported living or residential placement. There wasn’t enough funding for that.

Having Jon at home worked out well for a while. We had plenty of help at first; our friends from Maine who wintered in the back house on our property in Kissimmee, Florida, another friend from New Hampshire who lived with us for a year, our youngest son who was always willing to be extra eyes and Mike, who was working from home at the time and was usually available to watch out for Jon if I needed to go out.

Then one by one the extras faded away. The friends from Maine, now in their golden years, had too many health problems to travel and my other friend moved back north when the cancer she’d been battling returned. David went away to college and a few years later Mike sold the business, took a position away from home and started leaving the house every morning.

Suddenly it was just me…and Jon.

At first, I tried taking him with me to the places I needed to go – shopping, the gym, to run errands – but his constant resistance clearly stated that he really didn’t want to do those things with me. Every outing attempt became a slow motion drama of frustration and tension between us.

For all Jon is and does that is amazing and wonderful, he is equally obstinate. I quickly realized that everything I needed or wanted to do away from home was now next to impossible

That was a difficult time for me. The adjustment of becoming a full time caregiver left me feeling trapped, resentful and alone. I was overwhelmed with how restricted my life had suddenly become and dealt with constant guilt for feeling that way. I cried, prayed and begged God for a solution.

Then I started to write. At the time, it was one way I could keep my sanity. I was desperate for my adult son, afraid for his future and discouraged about my own. Some of those early writings no one has ever read, they are SO honest and TOO vulnerable – my broken heart spilled out on paper.

Eventually I began to share some of the lighter pieces with friends and family. They loved them and encouraged me to write more and make them available to others. Social networking and inexpensive or free websites, and easy blogging for technology “dummies” like me, gave me a place to share my words with anyone who cares to read.

So here we are today. A few things have changed since then.

We moved closer to Mike’s work so he’s home more. We have caregivers that come in a few times a week to provide respite so I can go to church and out with my husband now and then.

But the biggest change is inside ME.

I have also come to understand that I can not want for someone, what they don’t want for themselves. Jon is content being home so I am learning to be content with him. I’m adjusting better to my ‘confinement’. I’ve discovered more about unconditional love, grace and self-less-ness in these years than I could ever experienced in a lifetime.

I confess to having days when it’s hard, when I want to be selfish, when I want to do what I want, when that voice in my head tells me, “You deserve more, everyone else is coming and going as they please, but not you.”

But as the Apostle Paul said in Philippians 4:11, “for I have learned to be content whatever the circumstances”. Learned is the key word here.

This contentment-in-all-things, isn’t automatic. It’s a process and I’m still learning.

My life is still scheduled around Jon and when I do take him out, it’s always about him, not me.

And I still write…for me. I’m continually ‘preaching to the choir’, so to speak, and I am the choir!

Everything you read is to remind me that it’s OK, I’m OK. Jon’s OK. Life is good. We’re going to be alright.

People tell me often that I inspire them. I am thankful for that even though I don’t feel like a role model for inspiration at all.

Life here is different, yeah, even weird sometimes, but God is faithful and He has a plan A. It might not be my plan B, C or D, but it’s alright to live it the best I can, laugh about it sometimes, pray about it all the time and cry occasionally over what is not.

If you’re inspired by any of that then I’m grateful for the bonus of being a blessing in the middle of my unusual life and also in the middle of yours.

Maybe sharing this helps all of us. Maybe when we are open and honest with each other it releases us from the dangerous deception of charades and perfection, allowing us space to be who we are and where we are on this life journey.

Just maybe, we can peel off the mask, look one another in the eye and admit, “This is me, this is you. Life isn’t perfect or even normal, but let’s walk it together and be inspired by what God can do in, for and through those who are called according to His purpose in Christ Jesus our Lord.” (Romans 8:28)

The glory of God shining out of our frailty, weakness and humanity…

Now that’s inspiring!

Romans 8:28 “And we know that all things work together for good to them that love God, to them who are the called according to his purpose.”

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!

The End Is Just The Beginning…again.

It’s been so since the beginning – God – just wanting to be with us. return

 “God created man in his own image, in the image of God he created them; male and female he created them.” Genesis 1:27

He created us for relationship, friendship, love. He wanted to hang out with us, come down from the Heavens in the cool of the day and walk and talk with us in the beauty of His earth creation.

 Then one poor choice ruined everything.

“The man and his wife heard the sound of the Lord God as he was walking in the garden in the cool of the day, and they hid from the Lord God among the trees of the garden.  But the Lord God called to the man, “Where are you?” Genesis 3:8-9

Throughout history God continued to call mankind back. He came and spoke in many ways: through clouds, pillars of fire, a burning bush, and a golden box filled with Himself, signs, wonders, miracles, prophets, judges, priests, kings.

Until Jesus arrived – ‘Emmanuel, God with Us’ – proving His desperate longing for me and you and providing us rescue from all our poor choices.

The end will culminate with God returning to His original plan. John saw it in a Heavenly vision and was told to write it down so we would know…God still wants us.

“Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away… And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people and he will dwell with them. They will be his people, and God himself will be with them and be their God.” Revelation 21:1-3

In the beginning, God created out of desire, longing and love for us. And that is exactly how it will begin again in the end; a new creation, a new earth where He can finally physically dwell among us.

All He has ever wanted is you and me. No other god or human ever has or ever will go to such depths to demonstrate love.

How is it that we go to such depths to refuse Him?

When it comes time for the creation reset button to be pushed, I don’t want God calling for me, “Where are you?”

I’ll be right here. Still waiting and reaching in desperate gratitude for the One who loves me like no other; for the One who’s greatest yearning is to be with me.

Forever.

1 Corinthians 3:16 “Don’t you know that you yourselves are God’s temple and that God’s Spirit dwells in your midst?”

Are You Ready For Christmas?

wreathAs the calendar counts down to Christmas Day, I’m asked this question everywhere I go, “Are you ready for Christmas?”

The nuance of this question is understood in American culture to mean: is the wreath hung, the tree decorated, the lights and garland strung? Is the gift list shopped and wrapped, are the cards mailed and the cookies baked. Has every pageant, program and party been attended and have fixings been purchased and prepared for the holiday feast?

Have I made my list, checked it twice and run myself ragged until I’m not nice? Am I so weary when Christmas comes, all goodwill fades and I am undone?

If Christmas is only about the doing, I might as well cross it off the calendar. If all the external tradition and trappings, of the picture perfect Christmas were removed, could my heart still find joy in the season?

There were many who were not ready for Christmas when it first arrived.

It was a busy time. Caesar had called for a tax census and people were suddenly traveling to their place of birth, juggling finances for the trip and tax, waiting in long lines to register and complaining about the latest greed and ineptitude of the government.

Except for a group of Wise Men and a few Shepherds, most folks were inconvenienced, impatient and unprepared.

The Religious Leaders weren’t ready.

King Herod wasn’t ready.nativity

The Inn Keeper wasn’t ready.

The Town of Bethlehem and its many visitors weren’t ready.

An entire population of people missed a momentous event going on in their own backyard.

The Christ of Christmas had come, but there was so much to do and no time to notice.

Jesus came and Emmanuel, God With Us, is still here.

Do I recognize Him? Have I taken time to notice?

Those who understand the real meaning of Christmas should be ready everyday, any moment, all the time.

I’m ready for Christmas.

Are you?

John 1:10-14 “He was in the world, and though the world was made through him, the world did not recognize him. He came to that which was his own, but his own did not receive him. Yet to all who did receive him, to those who believed in his name, he gave the right to become children of God—children born not of natural descent, nor of human decision or a husband’s will, but born of God. The Word became flesh and made his dwelling among us. We have seen his glory, the glory of the one and only Son, who came from the Father, full of grace and truth.”

What’s Wrong With My Christmas?

Here it is two weeks before the big day and I’ve managed to hang a wreath on the front door.

That’s it.

Mike and David brought the tree down from the shelf in the garage after Thanksgiving and it stayed on the front room floor in the storage bag for over a week.

It’s been upright in the usual family room spot for four days now, with lights attached but only because they are built into the tree, certainly not because I put them there.

Christmas cards were just ordered two days ago. I hope they come in time.

I’ve done very little shopping and honestly I’m just not feeling it this year – all the external trappings of the Christmas Season.

When our boys were young there was an air of excitement as Christmas approached. I reveled in the cooking, shopping, trimmings, secrets and anticipation.

And I was a perfectionist.

I tried to teach the kids how to decorate the tree so it looked balanced. You know, all the holes filled in between branches and ornaments symmetrically displayed all the way around.

I think about that now and hope I didn’t take all the fun out of it.

Packages were wrapped in matching paper with homemade bows and hand designed gift tags.

Christmas dinner was a Thanksgiving repeat – huge and amazing.

Mike’s self appointed job has always been to put up the tree, make sure the lights work, then sit on the sofa and watch the kids and I embellish it.

He stopped helping me hang ornaments after our first Christmas together, as I came behind him and moved every ornament he put on, to a different place.

Now, I think I’d be thrilled if he and Jon hung all the decorations on the same side of the tree while I sat and watched.

When I ask Jon, my perpetually moody, thirty-plus-year-old-teenager if he’d like to help, he looks at me like I have three eyes in the middle of my forehead and walks away. (He will, however, be very interested in opening the gifts underneath this undecorated tree. 🙂 )

David and Clara won’t be here for Christmas. They’re going to be with her family this year (as they should), so no incentive there.

Someone please tell me I’m not turning into a Grinch or maybe Scrooge!

The good news, in my tale of Christmas woe, is the Jesus of Christmas is dearer to me than ever.

We have come to the end of another year and my heart is decorated with blessings, warmth and the joy of His overwhelming love.

Life is not perfect. There are struggles, frustrations and annoyances, but Jesus has been and will continue to be my faithful friend and gentle shepherd.

As we celebrate this season of His Earth arrival, my heart grows two sizes larger at the thought of a Savior who came for me.

To rescue. To strengthen. To comfort. To cleanse. To change. To love.  ME.

So whether the halls are decked or not, that’s enough to make even this Grinch, want to celebrate!

Matthew 1:23 “The virgin will conceive and give birth to a son, and they will call him Immanuel (which means‘God with us’).”

 

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.”

 

The Hunter and The Bear – a parable of miscommunication

hunter bear copyA Hunter and a Bear were walking through the woods when they came upon each other.

The Hunter was afraid.

He raised his rifle and shouted, “I want to have you for dinner!”

The Bear was afraid.

He reared up on his back legs and roared, “I want to have you for breakfast!”

The Hunter fired but missed, then both turned and ran away.

The Hunter went home and told his friends, “I tried to invite the Bear over for dinner, but he threatened to attack me.”

The Bear went home and told his friends, “I tried to invite The Hunter over for breakfast but he tried to shoot me.”

The Hunter and The Bear could have been friends, but they were not clear when they communicated their wishes to each other.

People don’t always say exactly what they mean and we don’t always hear exactly what they are trying to say.

Before taking offense, stay calm, ask questions, repeat what you think you heard, clarify and make sure you understand precisely what is being said.

Doing this may rescue a potentially great relationship or save one you already have.

~Miscommunication: the failure to communicate clearly~

Proverbs 12:18 “Reckless words pierce like a sword but the tongue of the wise brings healing.”

Proverbs 15:1 “A gentle answer turns away wrath but a harsh word stirs up anger.”

Proverbs 18:13 “He who answers before listening-that is his folly and shame.”

Proverbs 21:23 “He who guards his mouth and his tongue keeps himself from calamity.”