Category Archives: Special Life

Smell The Roses – My Special Education, Lesson #5

my red roseA mom on a Facebook page for parents raising special needs children excitedly posted her child finally said his first word. I don’t know what her son’s diagnosis is but at almost five years old he has never spoken, until now.

His first word wasn’t the typical ‘ma ma’ or ‘da da’ but mom didn’t care. He wanted Goldfish Crackers and when he said ‘goldfish’, it was the most beautiful sound her ears have ever heard.

Another mom raved about her ten month old daughter who is finally able to sit up alone. Other parents might post that their ten year old autistic child is potty trained at last or how a child has taken first wobbly steps with leg braces.

These parents are over-the-moon happy and as an online community of support, encouragement and cheerleaders, we celebrate each child’s achievements with thumbs up Likes and comments into double and triple digits.

Parenting a child with special needs means appreciating what others often take for granted. Every milestone, every accomplishment, no matter how small or when it comes, is a victory and blessing that brings with it incredible gratitude. (Read more about my recent experience with this here.)

As the mom of a developmentally disabled adult son, many years of heightened observation and appreciation overlap into other elements of my everyday life.

I find it easy to see the joy and beauty in little things others may miss; the song of a bird, the color of a flower, the pattern on a butterfly wing, the subtle difference in green layers of foliage, the fragrance of an orange blossom, the beauty of a sunset, the satisfaction of a good book, the rapture of incredible music, the tranquility in lingering over a scrumptious meal, the melty goodness of dark chocolate, the uniqueness of people I love, laughter with a friend and peace found in prayer.

All of us are busy; working hard, paying bills, raising families,  making decisions, solving problems, chasing fulfillment, living the purpose driven life, but sometimes we need to look up and around and notice the simple gifts God has given us to enjoy.

How much do we miss in the rush to possess, conquer, do, do, do and go, go, go?

Life is not about how fast we go but the moments we enjoy along the way.

In the rush of the every day, stop and take a moment for simplicity. Become intentional about slowing down long enough to notice the magnificent details that are hidden in the rush of accomplishment.

No one enjoys simplicity as much as my son and If Jon has taught me anything, it’s to slow down, take a deep breath and “stop and smell the roses” as the saying goes.

After all, a guy who can turn dinner at a restaurant into a six hour event might know more about enjoying the simple things in life than the rest of us.

Being with him forces me to pause and sniff a few roses. And one thing I know about roses, they may be thorny, but they still smell beautiful!

“Progress is man’s ability to complicate simplicity.” ~ Thor Heyerdahl

“The ability to simplify means to eliminate the unnecessary so that the necessary may speak.” ~ Hans Hofmann

Jeremiah 2:25 (The MSG) “Slow down. Take a deep breath. What’s the hurry? Why wear yourself out? Just what are you after anyway? But you say, ‘I can’t help it. I’m addicted to alien gods. I can’t quit.’

Psalm 39:5 “You have made my days a mere handbreadth; the span of my years is as nothing before you. Each man’s life is but a breath.”

 

 

The Best 15 Minutes Of My Day

jon“Why did the cow cross the road?” I asked.

Jon’s eyes momentarily glanced into mine, then he shrugged. I knew he wouldn’t reply and continued to the punchline.

“Because the chicken was on vacation.”

He grinned slowly at first, and as he thought about it began to chuckle.

I love it when we connect, when Jon actually responds to me with something besides annoyance and frustration. I’m thrilled when my son emerges from his own world, interested in interacting. It happens so rarely that I try to drop whatever I’m doing and soak up the joy of the moment.

Our communication would seem juvenile and insignificant to an outsider, Jon singing me a Disney song or repeating a phrase from a movie, but I know it’s huge.

Today, when he began to lose interest and turned to walk away, I tried to hang on to it a little longer. I started reading him jokes from a website.

“Why do fish live in salt water? Because pepper water makes them sneeze.”

Got a smile from that one and also this one, “Where do sheep go on vacation? To the Baaaaahaaaaamaaas!”

Then, “What do you a call a pig who knows Karate? A Pork Chop.”

Jon thought on that one for a few seconds and shook his head. He expelled a long hiss, sounding like, “Ghhhheee,” and said to himself, “that’s not funny,” frowned, then turned away.

Just like that. One joke, determined to be dumb, and it was all over. I tried reading more as he walked away but the connection was gone, just like a computer system that had suddenly shut down.

For fifteen minutes, my son wanted to “talk” to me today. It might not seem like much, actually it’s never enough.

But it was the best fifteen minutes of my day.

No Such Thing As Normal – My Special Education, Lesson #4

Normal. normal

What is it? 

Are you? Am I? And who decides what the standard for normal is?

One dictionary definition describes normal as: conforming to a standard; usual, typical, or expected.

And Wikipedia describes it as: a lack of significant deviation from the average.

Don Piper, in his book 90 Minutes in Heaven, states: “Some things happen to us from which we never recover, and they disrupt the normalcy of our lives. That’s how life is. Human nature has a tendency to try to reconstruct old ways and pick up where we left off. If we’re wise, we won’t continue to go back to the way things were (we can’t anyway). We must instead forget the old standard and accept a ‘new normal.’”

I’ve contemplated the word ‘normal’ and the way humans like to measure themselves by it, since the unforgettable day our son Jonathan arrived.

There isn’t much about parenting any child that allows for normalcy. With a special needs child all bets are off!  Normal is always being redefined.

There are so many ways our family life is not typical,  especially now that Jon is an adult and still here with us; our ‘normal’ detours along an uncommon path providing us with many challenges, learning experiences and unusual blessings.

Culture, society and humanity in general, constantly attempt to fit us into a mold they call normal. A certain set of actions and behaviors that dictate how we are to look, dress, think, act, even live, yet the parameters for these shift like wind currents. What was considered normal yesterday isn’t today and tomorrow it changes again.

My very wise husband  defines ‘normal’ this way: one fool doing something and a whole bunch of other fools following until everyone thinks it’s OK.

This protocol for fitting in exists everywhere, in education, corporations, political parties, sports and religious organizations, the movie and music industry, agents, publishers and business. There is no escaping the pressure of the world’s attempt to fit us into its mold.

The human heart yearns and the spirit of man longs for normal, for a perfection that is unattainable in a sin cursed world, a world that was never meant to work properly without God at its core. So we define ‘normal’ as we see it, as it seems right to each of us, then we pretend we are (Proverbs 21:2).

The standard for “normal’ was set at Creation. It was perfection. Everything, including us, was perfect. One wrong choice, an act of free will against God set the planet and everything on it in a downward spiral taking us farther away from the original standard with each generation.

God hasn’t called me or you to be status quo, ordinary or average, according to the world’s standard.  We are pressed to constantly adjust, adapt and stretch to life’s challenges with a mental, emotional and spiritual fortitude that defies our own reason and relies entirely on His.

As God’s special kids, we are called to be peculiar, non-conformed and transformed. Be in the world but not of it.

I suppose, in this regard, Jon has a head start on me. 

 One day God will reset the earth back to His original plan (Revelation 2:1-4). All will be right again and finally normal will be what it was always meant to be.

I Peter 2:9 “But you are a chosen generation, a royal priesthood, an holy nation, a peculiar people; that you should show forth the praises of him who hath called you out of darkness into his marvelous light.”

Romans 12:2 “And don’t be conformed to this world, but be transformed by the renewing of your mind, that you may prove what is that good and acceptable and perfect will of God.” 

*Don Piper with Cecil Murphey, “90 Minutes in Heaven,” (Grand Rapids, Michigan: Fleming H. Revell , 2004), pg. 137

 

 

 

 

“Tolerance” As Defined By Jon

Jon demonstrated the true definition of tolerance a few days ago. stacking-restaurant-wood-high-chair-with-dark-finish-assembled

After a haircut he wandered down the plaza to the sub shop. We ordered, took the front booth, closest to the door and settled in for a long evening.

Several hours later a young couple, with a baby in a car seat, came in and sat in the booth behind us.

Jon has a problem with babies. They cry, scream and are often loud even when they are happy, squealing as they test their vocal chords. High pitched baby sounds have always bothered him, a lot.

As soon as the baby family sat down, Jon collected his sub, drink, two bags of chips and other items he had spread out on the table and moved to the table farthest away from baby, at the back of the building.

He methodically organized his food on the table top and sat down with his back to us. I was chatting with a couple of friends who had shown up to keep me company and was explaining to them why he moved so suddenly, when one of them told me to turn around and look.

Jon had gone to the back of the restaurant, picked up a wooden high chair and was carrying it to the baby’s table. He set it down gently, nodded and smiled ever so slightly at the baby, then turned around and walked back to his table. He stayed there until the baby left and then came back up with us.

In a society where the word, tolerance, has been redefined as accept me, approve me, love everything about me or you don’t like me at all,  Jon showed us that you don’t have to love someone’s behavior to treat them well.

The true meaning of tolerance is displayed in kindness and grace being extended to people who annoy us, even those whose behavior we disagree with.

Thanks Jon for the visual!

Go here to read my other post on Tolerance

Philippians 2:1-8 “Do nothing from rivalry or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others. Have this mind among yourselves, which is yours in Christ Jesus,”

Approval Addiction Rehab – My Special Education, Lesson #3

Jon doesn’t care what you or I think. 226ASP6179944780

He is not out to impress anyone. He doesn’t yearn for accolades or glory.

The latest fashion trend does not factor into his wardrobe selection. If it’s too tight, too stiff or too much collar he won’t wear it. Give him his favorite well worn, slightly over-sized T shirts and shorts and he’s satisfied.

Yet he doesn’t give a second thought to leaving the house with a beach towel wrapped around his shoulders as a cape, or wearing his karate jacket combined with a cowboy hat and fingerless gloves, or walking around with a piece of bark mulch sticking out of his hat (read about that here).

Jon misses almost every cue for tact and poise and goes with how the moment moves him. Social graces and nuances are not on his resume.

Every now and then he might surprise you with acknowledgement, a smile or even a handshake just to let you know you’re still on his radar screen. But if he’s not in the mood to be bothered with you, he will freeze in place. If he doesn’t like something you say to him, he will scowl.

Jon can take thirty minutes or more to order at a restaurant, with the server returning to the table, nervously banging her pencil against her order pad and asking for the thirteenth time, “Is he ready now?”

Are you kidding? He hasn’t even opened the menu yet and he’s not troubled in the least by her impatience.

He can be so slow in a store checkout line people pile up behind us like kids in a school lunch line. You can hear them at your back, shuffling and sighing. It might embarrass you or give you an anxiety attack. But Jon has no concern for you or them.

You can’t hang out with Jon all the time and fret over what people think. You just have to get over it.

Approval from others is a prison Jon doesn’t visit or live in.

The truth is, when you’re with Jon, you have to get over what YOU think. Your opinion ceases to exist. It becomes a mute point.

Being with Jon means you’ve just signed up for approval addiction rehabilitation!

Obviously, my son is on the extreme end of people skills deficiency, but he has taught me much about freedom from the grip of other’s thoughts and opinions. Most of the time they don’t matter.

Jesus had his hands full with the approval addicts of his day. The religious leaders and lawyers, the Pharisees and Sadducees, were obsessed with approval. They nominated themselves as the politically correct thought police of their culture and took it very seriously. Everything they said and did was for appearance sake and everyone who didn’t walk, talk and think like them we’re viewed with contempt.

Matthew 21:26 and Matthew 21:45 (see below) reveal how much they feared public opinion and worried about what others said. The Pharisees major concern was for everyone to see their self imposed importance (Matthew 23:5) and was one of the reasons Jesus told his followers to stay away from them.

Ultimately our approval comes from God and we should pass every opinion through the filter of His standard for our life. He doesn’t see us as others do; for “man looks on the outward appearance, but the Lord looks on the heart” (1 Samuel 16:7).

When we’re tossed around by every idea, remark, criticism, viewpoint, trend or bit of advice we encounter, we become what everyone else thinks we should be instead of what God made us to be.

Of course we need to be careful of an attitude that says, “I don’t care what you think, therefore, I don’t care about you,” but living life based solely on the praise and admiration of others is not living at all.

I’ve come a long way from where I use to be, thanks to Jon, but I pray I can master the fine art of caring about others compassionately without caring what others think of me.

There’s something incredibly liberating in that.

Galatians 6:14 “I am going to boast about nothing but the Cross of our Master, Jesus Christ. Because of that Cross, I have been crucified in relation to the world, set free from the stifling atmosphere of pleasing others and fitting into the little patterns that they dictate.” (The Message)

Ephesians 4:12-13 God’s goal is for us to become mature adults—to be fully grown, measured by the standard of the fullness of Christ. As a result, we aren’t supposed to be infants any longer who can be tossed and blown around by every wind that comes from teaching with deceitful scheming and the tricks people play to deliberately mislead others.” (Common English Bible)

*Matthew 26:23 Jesus entered the temple courts, and, while he was teaching, the chief priests and the elders of the people came to him. “By what authority are you doing these things?” they asked. “And who gave you this authority?”24 Jesus replied, “I will also ask you one question. If you answer me, I will tell you by what authority I am doing these things. 25 John’s baptism—where did it come from? Was it from heaven, or of human origin? ”They discussed it among themselves and said, “If we say, ‘From heaven,’ he will ask, ‘then why didn’t you believe him?’ 26 But if we say, ‘Of human origin’—we are afraid of the people, for they all hold that John was a prophet.”27 So they answered Jesus, “We don’t know.”

*Matthew 26:45 When the chief priests and the Pharisees heard Jesus’ parables, they knew he was talking about them. 46 They looked for a way to arrest him, but they were afraid of the crowd because the people held that he was a prophet.”

 

 

Family Night Out With Jon

As Jonathan gets older it seems he wants to go out less. But on this particular day, he manages to get himself dressed in something he hasn’t slept in the night before and decides to be a member of society at large.

Mike and I wait in the car about twenty minutes while Jon gathers a paraphernalia of items he likes to bring along when he goes anyplace; odds and ends of sticks, string, old shoe laces tied together, toy swords, a glove for one hand, an old cell phone, used chop sticks or whatever strikes his mood for the day.

He eventually gets in the car, but not until he stands next to it with the door open for several minutes allowing all the air conditioning to escape into the ninety three degree humidity. He slowly eases his behind inside and settles onto the seat.

Now we are sweating. Another minute or two goes by until he shuts the door.

I notice he has no shoes on, so to hurry things along, one of us goes back in the house to find them.

At last everyone is in the car and a collective sigh of relief ensues. We are, however, not ready to leave the driveway just yet.

Jon doesn’t talk much, not to us or anyone else (he will, however, talk to himself for hours on end), so he writes notes.

His notes are similar to Egyptian hieroglyphics. He prints words like they must sound in his brain, which include some backward letters, missing vowels and consonants. He will start sentences in the center or at the extreme right edge of the paper and quickly run out of room. From there the words can go anywhere – above, below, even vertical and as they pile up and around each other, it becomes almost impossible to decipher their meaning.

It takes a specialist trained in decoding ancient languages to figure out what his message means. We are working toward greater proficiency all the time.

After struggling for about five minutes or more to translate his cryptic communication, we figure out that he wants steak and shrimp. No better place for that than Outback Steakhouse, especially since Mike is an avid steak lover.

The seat belt is the next issue. We should refuse to leave until he puts it on but this can add another five to ten minutes to our wait time. By now we are over an hour into this dinner out and haven’t even left the house yet!

As we head down the driveway and out of our neighborhood, I silently thank auto makers for indicator alarms in twenty first century cars. We know from experience that after the seat belt signal beeps at least ten times at thirty second intervals, Jon will comply with its demand. He is not a big fan of loud repetitive sounds.

Finally we are on our way!

Most people drive to their destination, park their car and get out of it immediately. I know this because I have lots of time to watch them do it. Most people are usually in a hurry to get where they are going but Jon is not most people. It takes him forever to get in the car on the leaving end and just as long to get out of it on the arriving end.

His slower than turtle speed can be maddening if you’re on a schedule. We try to ignore time all together when out with him and think in terms of eternity. On this day, however, car exiting is going to be longer than usual, if that’s even possible.

Mike pulls the car into a parking space near the restaurant door and informs me he is going inside to get us a table.

“OK,” I say, “I’ll be in with Jon as soon as he get’s moving.”

We both know what that means. No sense in everyone suffering through waiting for Jon. Sometimes Mike waits, sometimes I do. We attempt to be fair about it and take turns.

The temperature inside the car begins a quick ascent back up to ninety. I sigh and lay my head on the seat back, watching people pull in, turn off their cars, jump out and disappear into the restaurant.

I’m thinking, Wonder what that’s like?

The elderly man with the walker is moving faster than us. Jon hasn’t budged an inch yet, has barely blinked.

I talk to myself: Just be happy that you don’t have to cook dinner tonight, Diane. Stay calm, be thankful.

The car is heating up so I open my door. Jon is finally rustling around and that’s a good sign, a start at least.

He reaches down to the floor in front of him and up comes a long length of thick, black shoelaces knotted together, which he begins to tie high around his waist. After fumbling with that for a few minutes a piece of red nylon netting appears (used as a chair float when fitted over a swimming pool noodle). Jon throws the netting over his left shoulder and tucks the corners underneath his shoestring belt in front and back.

Over the right shoulder goes a power chord unplugged from a piece of electronic equipment in his room. He tucks that under his belt too. Then he puts a bright orange visor on his head and a piece of stiff, bright red ribbon is pushed inside it just above his right ear. It’s protruding straight up like a singular antler over his head. Lastly, another piece of red ribbon is tied on his left ankle over top of his bleached white sock.

I watch all this in increasing disbelief, as each weird item is added, thinking there is no way on earth I’m getting out of the car with him in that getup! After living with Jon all these years it takes a lot to embarrass me but I still have a miniscule thread of dignity left.

At least twenty minutes has passed now and he’s ready to get out of the car. He does a final recheck on all his gear and reaches for the door handle. I abruptly pop the power lock button down.

“Jon, there is no way you are going in there with me, looking like that. It’s not Halloween today you know.”

Immediately his body stiffens and his face turns to the all familiar scowl which indicates he is not in agreement with my opinion. From there the power struggle begins. I spend the next twenty minutes attempting to talk him out of wearing his ‘costume’ into the Outback Steakhouse, going so far as removing some items off his person while he attempts to grab them and put them back on.

We’ve been in the car close to forty minutes now and our skirmish isn’t over yet.  I’m sweaty and hungry. My cell phone rings. It’s Mike.

“Why is it taking so long for you guys to get in here? “He asks, “I’ve already ordered the appetizer.”

Really?  You’re asking me this question AND eating appetizer without me?!

“It’s a long story,” I try to bury the irritation in my voice, “But if you want to come out here and see what he looks like you’ll know why. Hang tight, I’m hoping we’ll be in soon”

I finally manage to talk Jon out of the shoulder wear, which I stuff in the back seat pocket, hoping for an out of sight out of mind moment, and decide if I ever want to eat we can live with everything else.

The shoestring belt, the ankle ribbon and the orange visor with the ribbon planted in it are still intact.

We get out of the car and I quietly slip up behind Jon, carefully removing his red ribbon ‘antler’ hoping he won’t notice. No such luck. He spins around and glares at me.

“Sorry, Jon, but you look a little bit crazy with that thing sticking out of your head. You can wear it when we get back in the car.”

I shove the ribbon in my pocket and the scowl returns to his face. Jon freezes momentarily and I can see the wheels whirring as he attempts to process what he’s going to do about me, this annoying mother who keeps messing up his wardrobe plan.

At last he turns and starts walking along the front of the building. As he heads toward the door, he reaches down into the shrubs and snatches the longest piece of thick, red bark mulch he sees, returns to an upright position and triumphantly shoves it in his visor where the ribbon was, just above his right ear.

Now I’m glaring at him!

I throw my hands up in the air, “I surrender,” I say out loud to no one in particular and then to Jon, “Come on let’s go eat.”

We eat dinner with the shoestring belt, ankle ribbon and bark mulch visor, but the story doesn’t really end here. It never does.

What happens once we are actually inside the restaurant is a tale for another time. But let it go on record that on this particular day we leave our driveway around 4:30 pm and we arrive home around 10:30 pm.

The only place we visit is the Outback Steakhouse, which is fifteen minutes from our house.

A word of warning to anyone who might want to join us for an evening out, when we bring Jon along, better come in your own car!

 

 

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!