Posted in funny, parenting, Tuesday Tales

Failed Hit On A Guinea Pig

As an adult, my son Dalton and I swapped stories we’d kept from each other. When Dalton was about seven, he wanted a guinea pig. At the pet store, his older brother, Colton decided he wanted one. Dalton named his Lilly, and Colton named his Diamond. As a child I raised hamsters and wrongly assumed guinea pigs were the same, just a bigger model. So, I skipped researching them. Bad move.

While we were on vacation, my mom took care of them at her house. By the time we returned, she was as attached to them as the boys. A few days later Dalton announced one morning that something was wrong with Lilly. I sent Dalton to school and took Lilly to the vet where I got the grim prognosis.

Guinea pigs have very sensitive airways and tend to hide when they’re sick. By the time you realize your pig is sick it’s usually too late. Their respiratory system can’t tolerate smoke. My heart sank. My Mom smoked like a freight train. Lilly didn’t have a chance.

Dalton was crushed. The first thing my Mom said was, “Do you think I did something to it?” I could hear the anguish in her voice. I didn’t see the need to worsen the situation with the truth, so I lied.

Dalton wrapped Lilly in a towel and walked around holding and talking to her, begging her not to die. It was awful. He lashed out at Colton, saying it wasn’t fair. Colton only got Diamond because he wanted Lilly, so it should be Diamond dying. Now, Colton cried. When DJ, my youngest son, saw all the tears he joined in. It broke my heart seeing Dalton so upset and I couldn’t do anything. Or could I?

The most humane thing for everyone was ending the suffering. Alone with Lilly, I wrapped the towel around her head to suffocate her. But the second she squirmed, I let her go. I took a deep breath and reminded myself the purpose was to end Lilly and Dalton’s suffering. I tried again. Nope! She wiggled I let go. By the third attempt I accepted the fact I couldn’t do it.

Now I was crying. When my husband appears I told him I was a horrible mother because I couldn’t kill a rodent to end my son’s pain. He looks at me like I just dropped out of a UFO and said, “There has got to be a better way.”  He says that to me a lot.

Dejected and feeling like the worst mother in the world, I went to comfort Dalton as best I could. Sometime during the night Lilly died, and we buried her the next morning. A few days later, Diamond got sick, and we started the entire process over. Well, not the entire process. I didn’t bother trying to take Diamond out. And my Mom died years later, never knowing the truth.

“Mom!” Dalton yells. “You tried to kill my guinea pig?”

“Yes, for you honey.”

“Mom!”

“You were so upset I wanted to help you.”

Days after we had that conversation Dalton called me “Mom, I’m calling to tell you that I’ve told several of my friends about Lilly and we all think you’re crazy.”

“It’s not like I was trying to kill you. And what about the part where I couldn’t do it.”

“That’s the part where you’re a good mother.”

“You’re the one that wanted to share stories.”

“Yeah. Share not scare!”

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 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

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.

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

You Can’t Drag A Child To Progress

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