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Posted in Faith, Healthcare, parenting, The DJ Journey

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.  382819_2066102232110_512707139_n

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.

 

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Posted in Letters, Royal Family, Uncategorized

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. IMG_0196

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.img_0942

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. img_0930-1

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. img_0944-1

 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.

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IMG_0941DJ 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.

 

img_0933Frustrated 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!

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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.

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Posted in Royal Family, Uncategorized

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.

 

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Posted in Autism Spectrum Disorder, Just for fun, Letters, My Life My Way, parenting, Sensory Processing Disorder, Special Needs Kids

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? IMG_0038

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.

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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.

 

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

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Posted in Autism Spectrum Disorder, Faith, parenting, Winchester Sun Columns

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.

IMG-2425I 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!

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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.

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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

Posted in Church, Faith, Healthcare, parenting, Special Needs Kids, The DJ Journey

Even Wonder Women Needs An Oxygen Mask

Moms of special needs children tend to downplay or outright ignore their health. The needs of the child are so great we master the art of caring for them even when our needs are greater. We become so adept at neglecting ourselves for our child we do it without thought. It’s not an attention seeking action it’s survival mode.

Several months ago, I had the unsettling notion something was not right with my health. At first, I had no symptoms. By the time the symptoms arrived, I was in the middle of writing, directing, and choreographing our church Easter play.  I love working with the kids and doing dramas.

This one was extra special because it was the first one in which DJ participated.

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In God’s providence scheduling conflicts led to the play being done a week before Easter.  Any other day and the play would have been canceled.

By performance night, my body screamed for attention.  My health refused to be ignored any longer.  In a span of about 36 hours, I went from feeling like I might have the flu to unable to get out of bed. IMG_9242

What began as me ignoring a typical kidney infection morphed into a full-blown medical crisis.  Words like platelets, blood cancer, leukemia, heart attack, stroke, and premature death engulfed my conversations.

Restricted from any activity, I had ample time to contemplate how I landed on this crudely constructed road.  How did I become so violently ill?  It didn’t just happen.  The answer was clear.  I sacrificed my health in the name of being a strong, nurturing mother giving all and taking nothing for myself. Then came the day when the tatters of my Wonder Woman mentality were strewn about my sick bed.  Everything changed.

There is a reason airline stewardess instruct us that in the event of an emergency we put our oxygen mask on before putting one on our child.  On the surface, the command contradicts the mommy code of putting the child first.  However, the point on the plane should be the same in our everyday lives.  If we do not take care of ourselves, we will be unable to care for our child.   Ignoring our health increases the risk of prolonging or intensifying our illness.  By seeking medical care at the first sign of illness we significantly increase our chances of surviving the monster seeking to destroy us.

I’ve not yet fully recovered.  Don’t know I ever will.

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What I do know is that for ever how many days God gives me upon this earth, I want to encourage others through my mistakes and accomplishments.  So, get that mole checked, stop making excuses for the lump in your breast, don’t assume it is a cold that won’t go away and get a physical every year.  We take the best care of our kids when we take care of us.  Cause to soar as high as she does, even Wonder Woman needs oxygen.

An earlier version of this blog appeared in the Winchester Sun.

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Posted in Bullying, Holidays, parenting, Special Needs Kids, Winchester Sun 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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Posted in Uncategorized

Falling For A Scam When You Know Better

I swear somedays my brain tumbles right out of my head. For reasons I have yet to understand I gave financial information to scammers. I know better! Why in the world I fell for it is beyond me. It’s embarrassing and incredibly stupid. Making things worse is Steve is out of town. He handles all our finances. I don’t even bother myself to know the login information. Also stupid. stupid

Steve runs nonstop when he’s working. No time for breaks and definitely no for my crazy. I tried some logins but none worked. I had more attempt before I was shut out of the account. Fearing they’d ask questions I couldn’t answer and shut me out I didn’t call.  No choice. I had to call Steve and inform him he married an ignoramoose.

Of course, he couldn’t get to the phone right away. All I could do was wait and pray we weren’t already wiped out. Aflac pays employees as they work so multiple deposits go in the entire time he’s there. All I could think was he’s working his butt off for money I put in jeopardy. When I did talk to him I burst into tears. Never felt so stupid, regretful and anger at myself in all my life.

To rescue as much money as possible I headed to the nearest ATM. The window wouldn’t roll down. In the cold rain, I stood making multiple attempts to withdraw money all while in my PJ’s! I didn’t bother to change because I didn’t plan on getting out of the car.  Upside? I wasn’t wearing a sexy nightie. nightie

First three attempts stopped before I got the button to accept the ATM fee. I did the fourth time so I thought I got it. Wrong! No money and it stopped telling me the “amount exceeds daily limit,” After a frantic search to make sure I wasn’t overlooking where the money comes out I took off to another ATM.

Armed with cash and login information, I was ready to shut this mess down. Since the site didn’t recognize my computer I had to get a code. Slight problem. The code can only be sent to Steve’s phone or email. Do I know his email password? Nope! Another shining example of my intelligence or lack thereof. By the time he got the code to me, it had expired. I had to start the whole process all over.

If you think reporting fraud would be right there on their website, easy to see you would be wrong. I searched and searched. I gave up and called. After going through a blue million menus I finally get a real person.  She was foreign. I could barely understand her English. The combination of her poor English and my hearing loss resulted in a long conversation.

To say we were lost in translation would be a vast understatement. I thought she was telling me I had to wait 10 days before they would do anything. I flipped out. I started yelling at her through my tears that they were going to take all our money.  A good 45 minutes later we understood each other. communication

Enveloped in stress, I was grateful my inlaws wanted DJ to spend the night with them. But my brain still wasn’t working as I forgot to send his medicine. They had to come back. I despise others having to do something to fix my stupid. Just having a banner day, aren’t I? What’s my point? I don’t know. Maybe to tell people Ellen DeGeneres is not handing out money? Or don’t be stupid like me? Or perhaps just to release some frustration. I’m calling off the rest of the day and binge watch murder and mayhem on Investigation Discovery just to remind myself no matter how bad my day is someone else is having a worse one.

Posted in Education, In The News, Politics

Are You on the Bus of Integrity

Have you seen the big yellow bus of insinuation parked by Murphy’s on the bypass?  The intent, obviously, was to make people think Clark County Public Schools was endorsing Bill Taulbee for the school board seat district 1.  What Mr. Taulbee did not count on was the backlash of his outlandish act.  I spoke with Superintendent Paul Christy who strenuously denied the insinuation.  Mr. Christy stated the bus in question is not now nor has it ever been a part of the CCPS fleet.  In fact, he received multiple phone calls from angry citizens demanding to know why a school bus was used in this political stunt.  It certainly implied that the tax dollars you spend in our schools go to support Mr. Taulbee’s campaign, when in fact nothing could be further from the truth.

Mr. Taulbee’s choice of placing a sign on a bus not only nullifies any message he hoped to have but also toys with the boundaries of zone signage ordinances.  Section 11 of Winchester’s Zoning Ordinances deal with the specifications of signs.  Vehicle signs exempt from the ordinance are those painted or affixed to vehicles, contain only business/owner name, are on vehicles used in the business not just merely for displaying a sign, and are parked in an area appropriate for the business and in a manner that minimizes street visibility.  None of those apply to Mr. Taulbee’s bus stunt.

When Mr. Taulbee posted the picture of his infamous bus stunt to his campaign page he only incited more anger.  Again, using the tactic of insinuation, he implied employees of the school system aside from teachers were forgotten.  The facts are that other employees received raises alongside teachers.  It was just another smokescreen intended to conflict rather than clarify.  The campaign trail is where the candidate puts his best foot forward.  So what does that say when the candidate’s campaign tactics are deceit, misrepresentation, insinuation, and outright excuses to avoid constituents one one one?  Well, you don’t need a bus to tell you what that is a sign of!

Prior to this misstep, Mr. Taulbee was reported for exploiting his position as football booster president for political gain.  It has been said that Mr. Taulbee while presenting awards, working concessions and engaging in other booster activities he was simultaneously campaigning.  A bit frowned upon.  His own Facebook posts have alluded to such controversial campaign tactics.  Even as he used his booster position to benefit him politically, he also uses it as an excuse to shirk his duties.  His political mailer states, “I would personally would (sic) have liked to speak to every voter in the District. Unfortunately, due to working a full time (sic) job and performing my duties as the George Rogers Clark Football Booster President, I may not make it to your house before the election on November 6th.”  In my opinion, that is code for if you’re involved with football I’ve talked to you and if you’re not then why bother?

When I discussed these matters with Mr. Taulbee’s opponent, Patti Columbia, she understood the anger and frustration of her supporters but remained true to her eternal optimism and commitment.  She will continue to run a clean positive campaign centered on how she can serve the community.  That comes as no surprise to her supporters because it is classic Patti.

Patti Columbia didn’t just decide one day to run for school board.  For years, people have asked her to run.  Typical of her nature, she would only run if she believed she was the best person for the job.  She invested her time in educating herself about procedures and needs, attended countless board meetings, interacted with the community and a plethora of other things no prior board candidate has done before tossing her proverbial hat in the ring.

Patti Columbia doesn’t blur lines of integrity, she happily engages in the tiresome footwork of door to door campaigning and orchestrated her life to make the board seat a priority rather than something to try to make time for.  That is why the best choice for District 1 and all of Clark County is Patti Columbia.  Because integrity and insinuations really do tell the tale of the candidate.

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Posted in Education, parenting, Parenting From The Headlines, Special Needs Kids, Special Needs Students

You Can’t Drag A Child To Progress

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