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 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.

Click to view column

 

 

Posted in Autism Spectrum Disorder, Bullying, Holidays, parenting

What We Can Learn From a Red Nose Reindeer

With the Christmas season comes an object lesson in the form of Rudolph the Red Nose Reindeer. Immediately, we see Rudolph’s father trying to hide the glowing nose so his son better fits in. That is a lesson for parents. We should teach our kids to hold to social expectations as best they can but pretending a disability doesn’t exist benefits no one.

Rudolph’s rejection is swift and complete once his nose is revealed. Yet, in the middle of the mocking comes a doe who doesn’t care about the bright red light. Clarice even tells Rudolph that his glowing nose is better than the false one he was wearing. We all pray for our kids to find a friend like that. As I have seen in the lives of my boys there are kids in the world who will accept them even as others reject and ridicule them. Yet, sometimes it’s the adults that are thoughtless. Clarice’s father insists she not play with Rudolph because of his nose.

rudolph-hermieWhile Rudolph is dealing with his rejection we meet an elf named Hermie. Hermie has concluded that he prefers dentistry over toy making. This, of course, is unheard of and his boss doesn’t take the news well. Rather than give up on his dream, as instructed, Hermie determines to run away. Doesn’t take long for him to hook up with Rudolph and the two, label themselves as misfits and strike out on their own.

Rudolph and Hermie are certain there is no one like them. They are misfits, outcasts, and rejects. They are quite surprised to discover an entire island of toys, with varying “disabilities”, who feel the exact same way they do. Like Rudolph and Hermie, the toys are convinced no one wants them. As we know Rudolph ends up the hero by saving Christmas with the very nose he was mocked for.

Our special needs kid may or may not ever have the opportunity to show the benefits of all_misfit_toys_welcome_heretheir disability to the world. But that doesn’t mean we shouldn’t teach them about them. We need to find our child’s strength and play to that by purposely creating situations in which the child uses the strength. This is a two-fold concept. First, it teaches the child that they have something valuable to contribute. Second, as they use their strength their self-esteem grows. A child with a healthy self-esteem is less likely to succumb to the psychological  warfare of bullies.

We cannot change how other people behave toward our child but we can teach our child ways to deflect the hurtful things others do. It is how our child responds to the bully that is crucial. Hermie was so certain in his dental calling that he didn’t back down despite all the mocking. That’s what we want, kids that can remain self-assured in the face of cruelty. So, as you watch Rudolph this year, take a moment to review the points of the story and help your child uncover his unique contribution to the world. Who knows, he may even save Christmas one day.

 

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Posted in Education, Homeschool, The DJ Diariers, Valentine's Day

My Very Special Valentine

Despite homeschooling DJ we always have a Valentine’s Day party.  We’ve been talking about the party this year for a week.  Last night before he went to bed I told him all about the things we’d do today, much to his excitement.  We were going to go shopping, make cupcakes, crafts and just all around merriment.

Look at our cupcakes!  Aside from DJ being a little heavy handed with the sprinkles, they are perfect.  And our giant chocolate kisses turned out perfect, despite it being our first time attempt.

 

Anyone looking at these pictures would think we had a great time.  You know what?  They would be WRONG!  Somewhere between last night’s excitement and this morning’s reality DJ lost his “give a care” chip.  He was not only uninterested in any sort of Valentine’s Day activity but he made sure I suffered while making him do them.  Meanwhile, I’m living in some idiotic state thinking he’s going to warm up to the idea.  I was sure that at any given moment the merriment I had dreamt of would commence.  Wrong again!

Lost somewhere between the crazy notions of, “oh, he’ll come around” and “by george it’s a party and we’re going to have fun if it kills us both”, I came to my senses.  It’s not like guests were arriving at any moment.  The only guest was the dog and she can’t have chocolate or cupcakes.  There’s a reason he has special needs. Uh… because his needs are special (perhaps not as special as his mother’s though).  And it’s homeschool for crying out loud.  I’m not even competing with other mothers.  Apparently, I’m just crazy.

Alas, I gave up the party mentality and let the child go watch Big Hero 6.  And for that, I got the sweetest gift of all; a hug and big kiss from my very special Valentine.

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Posted in My Life My Way, This N That

If My Dying Dog Could Read; This Is The Letter I Would Write

190269_1003890557482_6555696_n  I’m agonizing over our final hours together.  Each tick of the clock splinters my heart.  Through the halls of my anguished mind bounces the question, how do I say goodbye.  How do I let go?  How do I show you the love you’ve shown me?  And how do I convince my aching soul that you are only a dog?  An animal.  Something meant to be loved for certain, but should it hurt this much?  Am I out of balance to feel my world skewed at the mere thought of you not being in it?

You came to me in my darkest hour.  I needed you so much.  I thought I was getting a service dog for DJ but what I got was a therapy dog for me.  I felt utterly alone when Mom died so Steve took me to the animal shelter to look for dogs who could be trained as a service dog.   16563_1080684437281_829948_n

I spotted you immediately as we drove up to the shelter.  “Boy, he’s pretty.”  Were the first words I said about you.  With your red coat gleaming in the rare winter sunshine you barked as you approached me but we both knew you didn’t mean it.

Since you appeared to have the run of the place, I assumed you must belong to one of the workers there.  While I talked with an employee, you kept appearing at my side and leaning against me.  I was looking for a service dog to help DJ learn to walk so at first I thought I imagined you were leaning against me.  By the fourth time, I at last got a clue.   6249_1038834391056_5170869_n

Three days later Steve and I returned to the shelter with DJ in tow.  I needed to see how you responded to him.  DJ walked in with his little walker and you were called over.  It took less than a second for you to size one another up before DJ let go of his walker, grabbed the fur of your neck and the two of you walked off.  All these years later and that scene has never lost its impact.

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The following day we picked you up at the vet’s office.  You busted through the door and despite having, only seen me twice, and the fact that we were seated behind the door, you came out of, you came right to me.  If anyone had any doubts before that moment removed them.  You belonged to us and us to you. That’s when the memories began.

The first time we left, you alone you freaked out and literally tried to chew your way out a window, leaving broken teeth in your wake.  You thought it was your mission in life to rid the world of cats.  You have such a huge personality behind your big soulful eyes that I never knew existed in an animal.  You were well behaved, easily trained, but also sneaky.  I didn’t have to say a word when I caught you on the couch.  You always climbed down slowly, head, and tail as low as they could be indicating you felt like the lowest of life forms.  You were funny, oh so funny.  But more than all those things, you possessed an uncanny ability to tune into the emotions and stability of your surroundings.  2012-11-23 23.42.50

I will never forget when two stray dogs came loping down the street, tongues hanging out of the sides of their mouths completely happy.  All they wanted to do was play.  You were fine until Colton got upset because he’d had a previous bad encounter with stray dogs.  You sensed that fear and put yourself between Colton and the dogs, letting lose a ferocious growl that scared even us.  Like cartoon characters those dogs came to a screeching halt, running away never to be seen again.  12941_1093670321920_6217877_n

While training you as a service dog I had to connect you to DJ.  Neither of you were pleased with the idea.  But as was your custom, regardless of how mad DJ got you stood your ground.  You did exactly what was asked of you and then some.  You took your service dog job very serious.   998508_4588442289035_378570338_n

In those painful lonely days after mom died, I would hug your neck and cry all over you.  You never flinched.  You simply sat there soaking up my pain through the tears that fell upon your neck.  And now here I am again.  This time there will be no crying on you because the pain is the loss of you.   OLYMPUS DIGITAL CAMERA

I know when we walk in that vet’s office tomorrow you will be scared and I hate that.  I despise that your final moments will be spent in a place that frightens you.  I know you’re going to look at me with confused, hurtful eyes and wonder why I am doing this to you.  The answer is simple.  You have given so much to our family keeping nothing for yourself, how can I do any less by you?

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In a little while, I will go to bed and the dreadful day will be upon us.  I will take that long final walk with you and endure your questioning eyes.  As the lethal drugs flow through your system stopping your heart, they will do the same to a part of me.  A portion of me will die with you and I don’t regret it because I have had the privilege of not just having a good dog but having a heaven-sent dog.  There will never be another like you and I am a better person for having you in my life.  Well, done my good and faithful servant; well done.

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