Tag Archive | autism

Peace– It Was Just Around the Corner All the Time

New Directions--We're On Our Way!

New Directions–We’re On Our Way!

We had enough.

For way too long, we went along to get along.  Ever done that?  It was so subtle we didn’t even realize we were doin’ it.  This wasn’t right, and that seemed a bit odd.  Should we complain?  Nah, don’t make waves.  You see, we’re new at being Conservators, and had no idea what was expected, or how quickly things can go wrong.

Our son was a successful student at Kings Daughters Center for Autism, and graduated with great pomp and celebration.  He learned several new skills, in fact learned to communicate with others in the public…a major feat in our eyes.

At that point he became an “adult” and was moved with the help of his State advocates to a new home, I suppose you could call it a “group”  home but he was the only resident for several months.  He was soon joined by a young roommate, and they were both supervised by a new provider of care, growing faster than was healthy for it.  For a time things were fine.  Then little details began to slip here and there.  Nothing major.  But definitely on the increase.  We were appointed Conservators…and were supposed to…what?  I knew how to care for him myself; but how to direct others?  We were located out of state; not sure how to proceed.  That Conservator responsibility was a bit beyond us…and he nearly paid dearly for our inexperience.

Before you know it, my stepson was ill.  Hospitalized.  With SEPSIS.  That’s not just sick.  That’s neglected sick, folks.  Life threatening.  And the deeper we checked, the more discrepancies we found.  When you find a few things that don’t fit, you can’t help but wonder how many have escaped your notice already.

So we had enough.  We put into motion the steps–most of them taken by others at our request, we didn’t do all the work.  Don’t get me wrong; most of this very necessary and urgent change was brought about by those who are experts in their field, and tremendously dedicated.  We insisted that the great State of Tennessee help us to help our son by moving him into a safe and secure environment, and quickly.  And more than one dozen people basically moved heaven and earth for us, to get this young man ready to transition into a different home, cared for by a different company of caregivers who are supremely trained, carefully screened, continually monitored.  They have so many checks and balances in place it’s a bit tedious…but thank goodness it’s there, and it’s working like it’s supposed to work.

We went shopping, collected furniture and furnishings, and drove to Tennessee and installed his new belongings in his new location, and Friday morning, we joyously collected him with all his clothing and incidentals and moved him into his new home with a kind young roommate that is delighted to have him, anxious to challenge and engage him, and help to elevate his quality of life.

Today I can say that I’m at peace.  I know that our son is receiving the best care that he could possibly have.  Please don’t misunderstand me.  I’m not saying that all is perfect and nothing can go wrong.  I’m simply saying that we’re striving for excellence and accountability.  And I believe we’ve found both.  And that’s enough.

I’ve got a question for you

Dalton Gene Peterson, 21 years old!!!

Dalton Gene Peterson, 21 years old!!!

I’ve had a busy couple of weeks…months.  My precious best friend Tillie died (my toy Maltese), and that slowed me down for a bit. Then I had to make an urgent trip out of state to update arrangements concerning our son Dalton, and that took research, and stamina, and lots more smartz than I seem to have lately. I’ll need some prayer on that one.

But for the rest of the time, other than escorting a valued friend (I guess all friends are valued, aren’t they?) to her doctor and chemo appointments, I’ve devoted  myself to some serious writing.  And what was once a bit of a chore…well, let me explain it this way.

It’s like ice cream. I want some. I LOVE it. But it seems that it’s a forbidden pleasure, that I can only indulge in it every once in awhile.  And that’s the way I’ve treated my writing for quite a few years now.  There are times it seems to “bust loose” and I end up writing all night, or all weekend, but I’ve tried to keep a lid on it.  And recently I woke up and realized that I’m withholding the biggest joy, the thing that drives me, and I should just settle down and just write.

And that’s when I made too much noise and that little demon that sits on my shoulder woke up and started in on me again,  He said that little of what I write is of value to anyone but me and my loyal friends who will continue to pat me on the back and tell me I’m “really good.”

So, dear readers, if you enjoy reading my ramblings I would love to hear from you.  I’ve written two chapters of a book about growing up in Kentucky and all the perils and pickles we managed to get into.  Into which we managed to get?  No.  The trouble we enjoyed causin’.  And I’m endeavoring to decide it’s worth pursuing.

And I intend to ramp up this little blog again and pepper it with stories on a regular basis.

Let me hear from you.  And enjoy this photo of the BOY, our Dalton!  (He wanted the camera, you’ve gotta be quick around him)

Take care, and always remember Whose you are.

The Little Measuring Man

I didn’t know what to do. Vernon’s boys had only visited my apartment a couple of times. I had put all breakables away when they came for safe keeping so I wasn’t sure how they would act in our new home.  We had just settled in and things were still in disarray, but the pathways were clear so Trent could scoot about and Dalton could find the remote, so I figured we were okay.

Moving day was the day after Thanksgiving in 2003, so we put up our Christmas tree right away. Not sure how to proceed, I sat the tiny tree upon a rather tall table. None of the ornaments were breakable so I thought we would be safe.

We carted in all the equipment that goes with two disabled children from the car and piled it in the den. I sat Trent down on the floor and smiled as Tillie (my rambunctious toy Maltese) inspected his face, washing it with her pink tongue. He grinned, began his little frog sounds and hopped away to inspect the rest of the house.  He seemed to find peace in the quieter, out-of-the-way spots, and preferred to keep to himself.

I heard the front screen door close and headed back to the living room doorway to encounter Dalton.  A definite aura of reverence came over Dalton’s countenance when he entered the living room and saw the small green evergreen, covered in red and gold ornaments with an angel beaming from the top branches. He proceeded slowly across the room to the Christmas tree and paused in front of it with his hands folded as if in prayer.

Few heavenly hosts could compete as his clear bell-tones rang out, tolling the notes of “Joy to the World”.  I hardly noticed that the words were indistinguishable as I caught the holy worship in his tone and the set of his shoulders.

Dalton looked up at me for approval and touched my cheek with one hand as if to ask me to join him in his song. Through my tears I sang the words to “Joy to the World” although I knew the words made no difference at all.

This serenade was just another innocent gift that I will always cherish and ponder in my heart.  Yet my lessons were only just beginning.  I dried my eyes and followed the sounds I could hear coming from around the corner and down the hallway.

I peeked around the corner to see Trent, face composed in his studious frown, in full swing, lecturing the dozens of videotapes that we had stacked in rows on shallow shelves from floor to ceiling. The occupants before us had walled up a linen closet, leaving just enough space for row upon row of videocassettes.  You’d think the tapes were hot or sticky, the way he delicately lifted each one by a corner, swinging it deftly, sort of weighing and “measuring” it for some mysterious reason only he could fathom.  He would lift one tape from the shelf with his left hand and place it, swinging it gently, behind him to the left.  Then he’d rise to his knees and reach for another with his right hand, repeating the sequence, hefting the tape as he lay it behind him to the right.

This process fascinated me.  Trent would concentrate, very serious, just jabbering at the tapes, excited to have managed to get this far in his little army of destruction.  I left him to his industry, not about to get in the way or to stop him.  Once again I had something to ponder.  Was he upset with me?  Did he love the confusion of the pile of tapes all over the floor?  He seemed extremely proud of himself as he reached higher and higher up the shelves.  Maybe this was a project that delighted him, designed to show his prowess or his endurance.  I knew one thing for sure, though.  In this rickety old house with its creaky floors and drafty halls, I had discovered a young mind that fascinated me.  A tender heart that humbled me with its reverence.  And I was totally and hopelessly in love.

Author’s Note:

Trent is a my husband’s son, a young man who weighs about 40 lbs.  He doesn’t speak, although he’s extremely expressive.  He doesn’t walk, doesn’t eat and his activities are pretty limited.  He conquers the world in spite of cerebral palsy, mental retardation, aphasia, asthma, a feeding tube, incontinence, and a myriad of other disabilities almost since birth.  You wouldn’t know that Trent is soon going, Lord willing, to celebrate his 22nd birthday.  Yet I’ve been so very blessed to have known him since 2003.  And this is the story of the day my life changed–when I met Trent.

Dalton is Trent’s younger brother.  Dalton is now almost 20 years old; he weighs about 125 lbs and blossoms daily in his own beautiful autistic world of wonder.   He can walk and at times run, he’s a whiz with a TV remote, but neither speaks nor hears very well.  He’s severely retarded, also aphasiatic and incontinent, but otherwise sees the world through brilliant eyes.  At the time we met, he was 11 and Trent was 12.

© 2012 His Kid, Inc.