Sunday, January 27, 2019

"I'm so sorry"

No...I haven't offended someone with something I have written (that I know of anyway).  It's part of a conversation that goes something like this:

Me - "My son is severely autistic"

Other Person - "I'm so sorry"

I understand the context which the person is typically saying this  They are usually saying that they are sorry that some children are born with debilitating conditions.  Or they are perhaps saying they are sorry for the extra stresses they imagine accompany raising a child with autism.  I take the statement as one of empathy and compassion.

It's that next statement that makes me wince...."it must be such a burden".  I try to take a deep breath and remember that the other party is not trying to be as insulting as that sounds.  But what I hear is:  HE must be such a burden.

The dictionary definition uses the words "load", "forced to carry", "oppressive", and "heavy" when explaining what a burden is.  And the feeling that the word carries is one of loathing and regret.  

I've encountered many emotions in my 27 years as Tyler's dad, but loathing and regret have never been included.  I see Tyler as a young man before all else.  Not an autistic young man, just a young man.  His autism may be pervasive but it does NOT define him.  It is what he has, but it is not who he is.  

I too am sorry.  I'm sorry that he won't ever have a wife, or children.  I'm sorry that he has anxieties and pains that we can't truly understand, much less alleviate.  But I have never, ever seen Tyler as a burden.  He is my son.  He is a charming and handsome young man.  He appreciates love and he gives love.  He deserves to live in dignity and respect.  Most importantly, despite his disabilities, he soldiers on...he attends his daily workshop, he attends and donates to his church, and he lives peacefully in his home.  He carries his own weight in this world and then some.  Of course he needs assistance, but he is not a burden.

So when someone wants to show sympathy to the overall circumstance, accept that for what it is intended to be.  But if the word "burden" comes across, I suggest you think twice before letting it go by.  It may be the perfect time to gently but firmly defend the dignity of your loved one.  If they are at all like my Tyler, they've earned it.

Be well and God bless.    Tom

Thursday, January 24, 2019

Peace at Last

With an ice cold Corona in my hand
I slide my toes beneath the sand
The sun eagerly welcomes me
And dances across the blue-green sea

I sink my chair at the waters edge
As though dangling at society's ledge
My ears filled with the ocean's song
That's been repeated many lifetimes long

A soulful peace before my eyes
Bright colors under cloudless skies
Nature's wonders on full display
As meant to happen every day

I close my eyes and see the past
Generations come and gone so fast
The children making castles tall
The ocean claims them one and all

Behind my chair is what I left behind
The pains and struggles of mankind
Politics, violence, and Gods of War
Too far gone to hope restore

That world for me has reached its end
I cannot turn that way again
I've left those evils in the past
And found my beach retreat at last

I've traded in what's gone so wrong
For a stack of books 'bout heroes gone
Some Buffett tunes to set the mood
With cheap cigars and cheaper food

Speak kindly if you say my name
Or not, won't matter just the same 
Here I'll be right by the shore
At last at peace for ever more

Saturday, January 19, 2019

The Rut We Know

Most of us can identify.  You don't have to have a special needs child or relative to relate.  The devil we know is better than the devil we don't.  The unknown is scary.  We don't walk in the dark because we can't see what is there,

Special needs caregiving is the very definition of this line of thinking,  The life balance is so delicate, so volatile, so dynamic, that to take any chance at all is unthinkable.

Yet nothing changes until something changes,  We can't wait around until a sign drops from the sky and smacks us in the face.  It just doesn't work that way.  We have been given the ability to think and to reason.  So it's our job to see the right thing and DO the right thing.

A few months ago I was miserable in my job,  It was so bad that I knew I wasn't doing the best that I could do.  But I was making the money needed to pay the bills, so I would just continue on.  Fortunately I got a call from another company who wanted to bring me on.  I had moments of apprehension telling me to not take a risk.  Too much on the line to take a chance.  There are mortgage payments, insurance, etc.

I took a leap of faith.  Just like when Tyler moved to his new home, I trusted what I knew was the sensible solution,  I decided that fear and complacency weren't a good reason to stand still.  I took a chance.  I stopped being a victim and I took control.

Today I like my job.  Tyler is adjusted to his home now of 3 years.  As hard as each move was to do, I've not looked back in any form of regret.

Please read this carefully....we get one life.  That's all.  We don't know when it will end.  Our special person gets one life as well, and they deserve the absolute best that life has to offer,  If something isn't working, it's time for a change.  One of the most profound statements I have heard is that the only thing worse than a bad situation for 100 days is allowing a bad situation for 101 days.

If you know it in your heart that things aren't right....change them,  Be unafraid.  Be fearless.  Have tremendous faith and trust in yourself that there is nothing to fear in the dark.  Any decision made out of love and from a sound heart will find the right way.

Be well and God Bless.    Tom