The Blood is Yours Harry

The all-knowing Harry got himself punked. Too obtuse to see the plethora of red flags, he turned into a Chatty Cathy. He revealed himself as a disturbed, arrogant child. His rudimentary knowledge of coal set me off.

I live in Kentucky. Unlike egotistical nonsensical Harry, I know about coal. Coal is to Eastern Kentucky what actors are to Hollywood. We have the most mines in the country. Closing coal mines means literally wiping out entire communities. Those who don’t starve to death or commit suicide will turn to government assistance. Not only are we the fifth largest coal producer, but we are also the fifth poorest state.

Thanks to politicians robbing Peter to pay Paul, Kentucky is in financial crisis. Much needed support and programs are being cut. My son DJ is special needs. Kentucky doesn’t have the funds to help parents of special needs kids remain in the workforce like other states. Therefore, I left my lucrative job to care for DJ. The lost income forced my husband to work three jobs. Our four other sons were under age 11.

DJ spent more time in the hospital than out and I got cancer. The loss of my job meant losing excellent healthcare coverage that would have paid 100% of all medical bills DJ and I needed. I felt certain if the cancer didn’t kill me, the stress would. It took almost 20 years to crawl out of those black days.

Harry wants to take my personal tragedy, amplify it by ten and inflict it on over 700,000 Kentuckians all in the name of climate change. While Kentuckians lose everything, Harry will be private jetting around the globe on Daddy’s dime and British taxpayer money giving million-dollar speeches to fracking supporting companies.

Pikeville proves Kentucky can escape the coal mines. Once known as a coal town, Pikeville now thrives in the medical field. How? A wealthy man put his money where his mouth is and rallied support from others. He turned around a struggling hospital and built a medical college. Knowing the key to success is investing in people, hospital employees enjoy free healthcare and great pay. That is the epitome of being committed to your cause.

You going to do that Hollywood Harry? Are you so committed to an anti-coal world you’ll sacrifice your mansion, private jets, overpriced clothes, celebrity hob-knobbing, and million-dollar speeches? I didn’t think so.

So, in the words of your little BFF Greta Thunberg, “How dare you!” How dare you think you know all the answers. How dare you contribute nothing but take everything. How dare you devalue people. How dare you present as climate control pious while raking from fracking supporting companies. Most of all, how dare you attack my state, my people, when you have never stepped one designer shoe here.

You sit on your holier than thou throne in your privileged life, calling for the destruction of thousands of lives. That Nazi costume you wore wasn’t a costume at all. It was an expression of a warped sense of self. You have the audacity to attack our president for preserving lives, yet you’re too spineless to walk the coal mines as you did the landmines. The only one with bloody hands is you, Pontius Pilate.

 

20 Years of Loving DJ

A doctor, we’ll call Dr. S, said awful things about DJ. Things no one should ever say about a child let alone a patient. She felt compelled to perversely tell me how inadequate my baby was. She ended with words I never let permeate my heart. “He’s a blob. He’ll always be a blob. That’s all he’ll ever be.” Dr. S lives today because my husband physically restrained me long enough for her to scuttle from the hospital room never to be seen again.

Each candle added to DJ’s birthday cake serves as a tangible reminder of an invisible faith manifested through the most unlikely of people and circumstances. So, on his 20th birthday, I want to bring Dr. S up to speed on her dire predictions. And remind her that while she looked into this little face and saw doom and hopelessness I saw potential, love, and hope incarnate. 

DJ demands personal growth. You can’t be too cowardly to look boldly within. You must forget what you want, expect, and plan. Me holding onto expectations and comparing us to others propelled us nowhere. So, when public school and DJ weren’t a love match I became what I never wanted to be – a teacher! No offense to teachers. I just never fancied being one. As a little girl, I was the only one on our street who preferred being the student when we played school.

It took us a couple of years to find our groove but DJ thrived in homeschool. Shock to me, but I enjoyed teaching him. The fuel to higher learning is individualization. Crafting lessons to his needs, incorporating sensory-rich field trips, and teaching by a grasp of subject matter rather than a perceived grade level, proved to be the ladder to his higher learning window.

 

With education came books. Books taught me as much about DJ as they did him about the world. Through books, DJ told me how he loved Kentucky history and opened a path for me into his nonverbal world.

 

DJ views history as a learning tool. Dr. S viewed history, at least medical history, as an inescapable future. Dr. S’s encapsulating DJ into a sports-less world only made us determined to try it all. It should be mentioned that Dr. S did not include sack racing in her list of sports DJ couldn’t do. DJ and his Daddy just threw that in as a show-off manner for Aunt Neen and Maggie.

 

He also learned to swim, ride a bike, and even find his way around a kitchen.

 

It didn’t take long to figure out that the best things for DJ, cost us the most. Giving DJ basic life experiences we all take for granted, means expending physical stamina, mental stress, and emotional shifting. Yet, it’s menial compared to love. The more experiences DJ has the more he learns. The more he learns the more he grows. The more he grows the more he overcomes. And the more he overcomes the more hope he infuses into our crazy world. So, we do the things Dr. S said couldn’t be done;  eating out, camping, peaceful public outings, air travel, and even a journey across the Purple People Bridge.

 

It all matters; dressing up and turning his wagon into part of his Halloween costume, riding a scooter board, carving a pumpkin, reaching higher for the elusive Easter egg, training a service dog for him, building therapy tools like a platform swing for him to chill on, it’s all relative. Nothing is too much. Dr. S’s medical knowledge may have been correct. She didn’t factor in how life-altering unadulterated love is.

 

Of all Dr. S’s wrongs, her greatest was predicting I’d never hear I love you from DJ. Granted, I’ve never heard it verbally. But what I’ve learned is that the deepest of love isn’t said, it’s shown. And no one shows his love better than the little boy who supposedly never could.

 

• • • • • • • • • • • • • • • • • • h

A Letter To Meghan

Dear Meghan Markle, I heard you’re just existing not thriving. I get it. It’s like my life with my youngest son DJ.

DJ is special needs and can’t speak. And you? Well, no one can get you to stop speaking.

You love yoga workouts. DJ requires speech, occupational, and physical therapy every week. That’s in addition to working with him daily.

Like you DJ has a chef at his beck and call – me. He can’t chew so every meal must be pureed. Doctors said surgically inserting a feeding tube would make my life easier. But it’s not about me. It’s about DJ and providing him every opportunity to grow and learn new skills. I mean what sort of mother neglects her child to promote herself?

 You have a multitude of people to bring you any meal you’re hankering for. If someone didn’t cook, blend, and feed DJ he would die. He has zero ability to survive on his own.

You love buying ridiculously priced clothes. A few years ago, we pushed DJ through the mall in a wheelchair so he could point at clothes he liked. Everything he picked came off the clearance rack. He may be special needs but he’s smart enough to know how to get the most bang for his buck.

Sky-high heels are to you what orthotic braces are to DJ – a necessity.

Cute little Archie will need diaper changing for about three years. I’ve been changing DJ’s for nearly 20 years.  I gold medaled in diaper changing. 

 Working the logistics of private jetting around the world with a baby is exhausting. It’s like me in a public restroom trying to determine the cleanest part of the floor to change DJ on because he’s too big for baby changing tables.

 And nannies! Wow! It is so hard to get good help these days. We rely on DJ’s brothers and my eighty-year-old in-laws to give us a periodic break.

Those posh resorts really take a toll. DJ has literally been in the hospital about 100 times. We keep praying for a financial windfall so we can fulfill his dream of a Disney Cruise.

DJ is fully dependent upon me for basic hygiene. You know what that’s like. You depend on your hair, make-up and wardrobe entourage.

I can relate to you dragging Harry around. DJ’s legs don’t fully straighten, so he needs assistance ambulating. He can’t run and jump and can only walk short distances.

 

Frustrated you couldn’t speak up for yourself you employed your friends to do it.  DJ’s friend is a speech device he carries around his neck. It only speaks what we program. He has no way to express original thoughts. He desperately wants to express himself. He gestures and babbles and I try to decipher what he’s saying. I call it DJ charades.

This has been my day every day for 19 years. You’ve been a Royal for nearly three. And you know what? DJ and I are thriving!

You chose your life. But life chose us. So, don’t you come at us with your nonsense. You’ve not the first inkling about hard living!

You want to thrive? You want positive press? Then stop acting like a spoiled brat!! It’s your JOB to honor Royal traditions and serve the British people. No one asks if you’re okay because anyone who thinks they’re entitled to take money for a job they refuse to do is clearly not okay. You will never be okay as long as you remain willfully obtuse. It’s time you ask yourself the question DJ answers every single day. Are you pitiful or powerful? Because you can’t be both.

 

 

 

 

 

Military Wants My Special Needs Son

Dear Selective Service Person;

I received your letter requiring my son DJ register for Selective Service. As a deep patriot, I must inform you – you don’t want that boy!  As great as America’s military is, they are not prepared for my little weapon of mass destruction. DJ has many strengths, but he’s a little quirky.  Do you really want an enlistee who even Santa gives the side-eye?

There are things he could do such as train bomb-sniffing dogs.  Got some out-of-control dragons?  He’s your man!  But not horses!  He prefers riding them backward and wonders why it doesn’t work out.  Not to mention, the helmet messes up his hair.

 

His flair for disguises is a definite asset.  Hugh Hefner and Phil Robertson never looked better.

 

As evident in his massive medical file, he holds up well under torture.

 

Waterboarding ain’t nothing but a thang.

He has a problem with loud noises, though.  They scare him and hurt his ears.  So, unless you want him standing in the middle of the battlefield covering his ears some adaptations are needed.  Put a silencer on guns, artillery shells, tanks, grenades, pretty much everything you have; including drill sergeants.  I hear they get a bit out of hand.

 

Considering how much trouble DJ gets into at home, putting him in uniform in another country increases the chances of an international incident.  He has a knack for getting into questionable if not downright compromising situations.  Gambling, document shredding, and literally caught with his pants down are only a few of his transgressions.

 

Literally with his pants down the sequel

Gambling

Literally with his pants down.

Document shredding

DJ aspires to be the world’s greatest social media influencer.  Therefore, he requests his uniform have more of the NASCAR I’m promoting something vibe rather than the camo I’ve come to kill you feel.  He thinks it works better for his brand.  He suggests his uniform have patches for Culvers, UK basketball, Pizza Hut, UK basketball, Coke, UK basketball, Bath & Body Works, UK basketball, Ricky T’s Bar & Grille … well, you see where this is going.

 

Though DJ is a true warrior at heart and a Superhero even The Avengers envy, I must exert my guardianship authority over him and reject your offer of war.  Alas, the world is just not ready for my DJ.  (sigh)  But don’t despair, his brother Dalton is all signed up and ready to go.  Good luck with that!

 

 

 

Sorry not that sorry,

Joan Graves

Disciplined with a Shake in His Stride

Many employers suffer a grave loss of which they are unaware. They shy away from hiring prospective employees because they are on the autism spectrum. The mere words autism spectrum conjures images of inept social skills, stark refusal to follow instructions, bursts of fury, refusal to take correction or responsibility and more. Amid, such a tsunami of negativity it is no wonder they drown out the positives. Yet, even as toddlers, there is a lot we can do to help our kids secure a job. We need to learn to recognize and respond to the potential.

Prior to Annie Sullivan’s arrival, Helen Keller had no discipline. She prowled her family home, doing as she pleased and responded to attempts of refusal with violent outbursts. Her parents labored under the misconception that allowing Helen’s atrocious behavior expressed love. Lucky for Helen a fiercely determined, courageous, half-blind teacher understood the roots of love begin in discipline. And discipline blooms from the small things.

I was nervous about my son Colton’s first involvement with STRIDE (Supporting Therapeutic Recreation for Individuals with Disabilities every day. I knew it was a fantastic program, but it forced me out of my comfort zone. It challenged me to face my fears even as I sought to still Colton’s. I had to swallow my pride, accept I wasn’t the only one able to care for my son and get myself out of his way. He was evolving. Pandering to my fears placed me between the kid he was and the man he’d someday be

This week, Colton started his first job. It’s a goal he’s pursued for several years. He has worked for family, friends, and neighbors but has been unsuccessful in the traditional job market. Until now.

Like most on the spectrum, Colton excels at repetitive tasks. Ordinarily, I wouldn’t advise the fast-paced and often stressful environment of restaurant work. However, food prep at Steak and Shake is ideal. Colton’s job is to remain in one station and chop, weigh, bag and otherwise prepare food for use the next day. He is able to work at his pace, somewhat segregated from other employees, spared from the hustle and bustle of peak hours, does the same thing daily and works off a list. An Asperger kid’s dream!

STRIDE members encouraging Colton at work

One of the greatest hindrances to kids on the spectrum is fear of the unknown. Doing things for the first time is scary for most but debilitating for some on the spectrum. Colton didn’t have that hurdle. He had an idea of what to expect because STRIDE taught him the basics of food preparation years ago. When we faced our fears and trudged the painful path of discipline and self-discovery in STRIDE, we had no inkling of what it would bring. The dividends of that years old investment are evident today. Colton loves his job at Steak and Shake. His self-esteem has grown exponentially because his coworkers lavish him with praise, kindness, and encouragement.

Colton explaining his job & encouraging his friends.

Times have changed a lot since the days of Helen Keller. But a child’s need for discipline has not. The world’s expectations of our kids tend to be low. It’s our responsibility to be the Annie Sullivan our kids deserve. We must love them through our pain so they may be a valuable productive member of the workforce and the community at large.

 

Visit http://www.winchestersun.com for more of Joan’s columns

Are You the Reason Your Child Was Bullied?

Yes, I see my glaring error.  No, I was not drunk when I wrote this.  Maybe, I can blame it on the holidays?  Once you get past it the column isn’t bad.  Enjoy.

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You Can’t Drag A Child To Progress

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WARNING: If You Go Grocery Shopping You Might Get Spanked

DJ decided one day he didn’t want to go grocery shopping.  He wanted his parents to continue drive him around aimlessly like some sort of unpaid chauffeur.  Because I had the audacity to disobey his wishes he threw a temper tantrum deserving of an Oscar.  For a nonverbal child he can be extremely loud, demanding, temperamental, and extremely stubborn.

Because DJ has significant disabilities he believes he is entitled to the Helen Keller mentality.  I’m inclined to agree.  We just disagree on what period of Helen’s life he should emulate.  He prefers the pre-Annie Sullivan days when little Helen was allowed to roam free taking from anyone what she desired and steam-rolling over anyone who dared get in her way.  I, however, am more inclined to the older Helen who is wise and prosperous as a direct result of  Ms. Sullivan’s discipline.  Therein lies problem one.

Problem two is that although DJ doesn’t speak he certainly comprehends.  Well over 90% of the time DJ is crystal clear on what is being asked or expected of him.  He is also well acquainted with appropriate behavior.  Anyone who spends time with him becomes aware of this fairly quickly.  But to strangers his intelligence and comprehension is masked behind his obvious disabilities. And that is problem three.

There are times when all three of these problems culminate into the perfect emotional storm. Such was the case on a trip to Whole Foods Market.  My husband, Steve, dropped DJ and me at the door.  That sent DJ immediately into def con 5 tantrum.  DJ likes to ride in the car and doesn’t tolerate well any interruption of what he desires to do.  In his little mind this public place was the perfect spot to stage an uprising.  He was certain that with enough vocals and emotion he would have everyone eating out of the poor little disabled boy’s hand.  But in my mind, I’m thinking being special needs doesn’t give him a license to be special bad.

To his credit, DJ spotted his audience much quicker than I.  An unsuspecting middle-aged woman just getting her shopping cart was about to be thrust into DJ’s world.  Looking back I almost feel sorry for her – almost.  DJ began screaming in his dialect that no one understands and stomping his foot in pure unmitigated anger.  Just as the lady passed us DJ’s hand snakes out and snatches her shopping cart.  With all his might he hangs on to her shopping cart and screams as if he is about to be murdered.

He didn’t just startle the poor woman he scared the crap out of her!  Her terrified eyes flew to mine.  I was immediately struck with the notion that I could probably ask this woman to give me every dime in her bank account and she would happily oblige if I would just pry my kid off her.  That thought didn’t have long to settle because it was edged out by a parenting philosophy I adopted with my first child.  Where you show it is where you get it.

I’m not easily embarrassed but that didn’t stop my boys from trying to get away with things in public, hoping against hope I’d give into them if others were watching. I give my boys room to fly and my discipline leans toward talking it out, finding out where they went wrong and finding a solution for the future.  However, staging a public coup was never a wise choice.  If they were brazen enough to try such tactics, I was brazen enough to spank their butts for all the world to see.  For each child it took no more than twice for them to quickly figure out a public spectacle was not in their best interest.  I was NEVER the mother in a store with a screaming, crying child that drew everyone’s eye.

That day in Whole Foods Market was DJ’s first encounter with the “where you show it is where you get it” mentality.  Because he is special needs he was given far more leniency than his able-bodied brothers.  In a calm voice I explained to him in no uncertain terms what was going to happen if he didn’t get control of his little volatile emotions.  However, during that discussion the lady now caught in DJ’s cross hairs was out of earshot.  She was about to respond to a situation she only thought she saw all of.

The stage was set for drama and us being us we delivered.  Without hesitating, I swatted DJ on the butt just before untangling his hand from her cart.  Now, for all that would like to crucify me for daring to spank my child a few things you should know.  First, I subscribe to the spare the rod spoil the child mentality.  Second, he was wearing a thick diaper that made more sound than inflict pain.  And third, I don’t really care what you think because you don’t have to live with him.

The poor unsuspecting lady in Whole Foods was about to get her first lesson in Joan Zone parenting.  When I gave DJ his single swat on the behind she swelled up with indignation,   looked down her very pointed nose at me and said, “I can’t believe you spanked him!”

Now, granted I could have taken the time to explain DJ’s medical history, but it wasn’t like I was beating the child.  He didn’t even cry.  In fact, DJ’s only response to his spanking was to stop screaming.  I never punish DJ for things he truly can’t comprehend.  But I know the difference in what is his disabilities and what is him simply acting out.  Rather than explain myself I took the frame of mind of, “You have no inclination as to what it takes to raise this child so step off!”  I didn’t say that.  Instead, I looked at this woman standing there judging me, pointed a very determined finger at her and said, “I’ll spank you too.”

The woman gave me an indignant “hummpf.”  She stalked off holding her nose so high in the air she would have drowned had it been raining.  Poor Steve who had been parking the car during this fiasco came in just in time to hear my response.  “Did you just threaten to spank that woman?”  He asked incredulously.  I merely shrugged, completely confused that after all these years of marriage he still has to ask such questions.

I’d love to give you the details of his very wise and logical speech about handling the situation differently but quite frankly, I wasn’t listening.  I positively adore my husband he is the most loving, intelligent person I know.  At the risk of sounding arrogant, no one knows DJ like I do.  DJ is my blessing, son, student, full-time job, patient, client and sometimes nemesis.  Steve is the most fantastic dad I’ve ever encountered.  But DJ is kryptonite to his superman parenting.

Later, we ran into the woman again.  At this point DJ has stopped his emotional terrorism.  He is now pushing his little walker right beside the shopping cart like a well behaved little boy.  He is smiling, laughing and stopping periodically to grab me and jabber in a way that even I don’t understand.  But understanding isn’t the point, attention is.  So, I stopped each time, leaned down on his level and give him my undivided attention.  It doesn’t matter that this turns a thirty minute shopping trip into a two hour event.  What matters is that even though I don’t understand what comes out of his mouth I’m make a genuine effort to understand what’s in his head. And it works.  With each interaction I learn a little more about how a little boy locked inside himself is clawing his way out in a desperate attempt to communicate with the world around him.

Our second interaction with the unwilling participant in DJ’s drama was much different than the initial.  With tears in her eyes, the woman reached out and grasped my arm.  She tried to explain how she didn’t understand and how sorry she was that her initial assessment of me was way off base.  I quickly assured her that I understood and that prior to having DJ I may have responded the same way.

I tried to explain to her the important message I want to say to you.   Special needs kids are forced to live in a world that doesn’t understand.  The world won’t bend their lives to administer to the least among us.  These kids must learn, to the best of their ability, how to navigate a confusing difficult world.  Because someday parents won’t be here to part the seas of a non-conforming world.  One of the most difficult aspects of parenting a special needs child is preparing the child to live in world that is chaos to them when their parents are no longer here.  I arrived at the conclusion long ago that coddling special needs kids, giving in to their very whim and not discipline them is more of a handicap than their disability will ever be.  So, the next time you’re in a public place before judging another’s parenting skills, keep in mind that what you’re seeing isn’t the entire story.

 

 

 

YouTube Scares Me More Than COVID19

When you’re a freelance writer or indie author you’re a business. You’re out hustling every day. Social media makes it simultaneously better and worse. Access to agents, publishers, and other writers is fantastic. But now before publishing a book or getting an agent you must create your brand and build your author platform. (insert eye roll)

I don’t want to do any of that. I want to play with the people in my head. The ones I created out of thin air but feel so real. The world they live in is more fun than mine. None-the-less, a girl’s gotta do what a girl’s gotta do. And this girl created a YouTube channel to help with that platform everyone in the industry harps on.

The problem is I despise being in front of the camera. I stuttered as a child. It took six years of speech therapy to overcome it but it’s still a raw nerve. When I’m in front of the camera speaking I worry the stuttering child in me will appear and trip me up.

Coronavirus drives people to the internet. When our entertainment options are eradicated we go online. I knew I had to make a video. It took me all day to work up my nerve. But alas, I finally did. Reward my strength in facing my horrid fear by watching my videos, subscribing and ringing the bell to get notifications. This is the ultimate social distancing. Until next time, take care of yourself, be kind to others and wash those hands! Click here for video

Crap Sign From God

The Joan Zone

At a family reunion out of state, DJ’s service dog alerted to an ear infection. Since DJ gets ear infections like a frat boy in a dare, Duke got a lot of practice honing his skill. Duke is gone over the rainbow bridge now but his perfect legacy of diagnosing ear infections lives on.  However, Duke was a bit quirky. He tossed condescending looks better than any human.  He was all business in his service dog role but every once in awhile he did something nutty.

My husband Steve has a freakish ability to find his way around any town. Even using old school paper maps he rarely got lost. But when he is lost – he is REALLY lost. And he does not cope with it well.  Suddenly, the boys and I are not funny.  We dispute this.  Some of our best zingers are triggered by Steve’s directionally challenged…

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Are Your Afflictions Eclipsed By Glory

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Sussex Sympathy Show

Meghan Markle wants the world to know she is vulnerable, so people should ask how she is. She gave an alleged tearful account of how the extravagantly wealthy life she cultivated for herself is hard. Meanwhile, Harry explains how every camera he sees and every click he hears transports him to the traumatized place of his mother’s death. Who does he tell this to? The camera crew they used to film their every move for a documentary! What is the thinking here?  This reminds me of the worst day of my life so I will add more than usual and have them follow me all the livelong day! It’s absurd.

This latest oh woe is me tale is not surprising. The Duke and Duchess of Sussex are holders of the platinum level sympathy card and are not afraid to use it. From her, “they don’t make it easy” mentality to Harry’s we take private planes to avoid assassins nonsense, these two have an excuse for every terrible decision they make. And it’s always someone else’s fault.

For months the British public complained about Meghan’s excessive clothing expenses and the couple balking at tradition and hiding their baby among other things. Considering, their Royal life if funded by taxpayers I think it’s a legitimate complaint. Their willful obstinance sank their popularity as deeply as the glacier did the Titanic.

Their remedy? Go to the murder capital of the world to find Meghan’s skin didn’t melt off from wearing an outfit twice and no band of kidnappers pounced on baby Archie. The UK paid for the people of South Africa to see the British Royal Baby first. Not a good plan. Rather than apologize for the insult they said, “Wait! We’re doing a documentary of our trip. It will explain everything.” Cue the tears and terror. Everything is the fault of everyone else and they are one emotional thread from unraveling. Meghan and Harry are more than the Duke and Duchess of Sussex. They are the King and Queen of Excuses.