Sad News In Oregon

Caregiving can be an amazing and wonderful experience.  This applies regardless of whether we are giving care to our children, parents, siblings, or anyone else who relies on us every day.  But those who live this role understand that there is a dark side.  

On Monday a single mom in Oregon fatally shot her 7-year-old disabled son, before attempting and nearly succeeding at killing herself.

My heart is breaking for the boy whose name was Mason.  According to the article, Mason dealt with severe mental and physical disabilities.  His father left the family right after his diagnosis.  He was home schooled by his mom because she didn't feel he could thrive in a public school.  As a single mom she was forced to live with her mother just to make ends meet.  She was described as an amazing mother and an active advocate for families with special needs.  According to friends there was nothing she wouldn't do for her son.

Its easy to take a holier-than-thou stance and condemn her.  It would be easy to consider her a monster or a coward.  The truth is she must have felt pain and desperation that few people can imagine.  She may have felt suffering, and watched her son suffer in such a terrible way that she wanted both of them to be at peace.  Its frightening when you consider that everyone close to her thought she was doing okay.  The public face that she put on must have been pretty incredible in order for her to hide such pain.

We should consider all caregivers, especially those doing it long term, as a risk for suicide. Worse yet, we should consider them a risk for homicide/suicide.  What she did was wrong and Mason had a right to life like any other human being, but I think it is important for us to understand why this happened and somehow use it as a lesson to prevent the next one.  She was able to tell herself that this horrible act was somehow going to make things better.

There are so many factors that can be looked at.  Perhaps trying to be all things...a mom, a wage earner, an advocate, had overwhelmed her beyond her tipping point.  Perhaps being abandoned by Mason's father made loneliness unbearable.  Maybe she spent every day watching him struggle and should couldn't do it anymore.  Maybe she saw herself in her late 20's with no foreseeable future for herself.  My bet is it was a combination of all of these things.

Maybe we need to invent a caregiver suicide hotline for those who are considering this as a solution.  Obviously she did not feel she could talk about this with friends and family, but maybe she could have confided in someone who has been there.  Sometimes you can tell things to a stranger that you can't tell to anyone else.  Make absolutely no mistake, this is not an isolated event.  I dare say most long term caregivers have similar thoughts.

We can discuss the reasons all day long, but the fact still remains that caregivers need people to check on them.   They need to feel that their well-being is important to others.  They need to know that alternatives are out there, other people who feel the same things are out there, and solutions are out there.  It doesn't matter if they appear to have things under control...we need to help them.  When we wait until there is a tragedy it is much too late.  Often the cry for help happens in the last moment and we can't afford to let that happen.

This entry is dedicated with love to Mason Jordan who had his life cut too short, and to his mom Tashina who so tragically lost hope for herself and her son.  May God look after and protect them both.  My heart breaks for you both.

Be well and God bless.   Tom

Anger With God

Sometimes I share questions I receive from readers or other people in our circle.  For the most part I feel comfortable about my answers because I have the underlining notion that I always gave Tyler my best whether being brilliant or making a terrible mistake.  This particular question I haven't fully thought through because it isn't easy: have you ever been angry with God over Tyler's circumstances?

My answer is.....yes and no.

I've had a difficult relationship with my faith.  I try to remember the things that I'm taught, like Tyler has wonderful gifts and I have discovered wonderful things with myself.  You would think that this makes faith a slam dunk.  But then I flash back to memories of hospitals, surgeries, aggressive behaviors, tears, anxiety, and panic attacks.  I see the little boy laying on a hospital bed being held down by his Dad, who he trusted more than anyone in the world, so that a doctor could prod his brain shunt with a needle.  That little boy, red faced in fear looking for his Dad to save him and not understanding why he is holding him down.

It tore my heart apart then, and it tears it apart 20 years later.  I don't know how to make that go away. I can't find the right sermon or hymn that makes that ok.  How do I find faith in that moment when Tyler looked at me and said "Dada" over and over again not understanding why I wasn't helping him?   I want to...I try to...I just struggle to find it and keep it.  I can't help but think of our children who go missing, are sold into slavery, who's homes are riddled with war, who starve, and who suffer from poverty and disease,

Through all of those thoughts I look at Tyler and see the influence his life has had.  He is helping to put Bibles into the hands of those who need them.  He has inspired countless people in this blog.  He inspired children in his school.  He is a blessing in so many ways, and I am thankful for him.

I continue to search for a way to reconcile those two things,  perhaps I don't have enough faith, perhaps my empathy gets in my way, or perhaps I'm just a mortal who has mortal weaknesses.

So my answer remains...yes and no.  Yes I get angry when I think about what he has been deprived of and what so many others struggled with.  And no, I love Ty and would never trade him for the world.

Call me a work in progress.

Be well and God bless.  Tom

Russian Sugar Cakes

Good evening.

First of all I want to announce that My Walk With Tyler has 57,000 views.  All I can say is a thank you from every inch of my heart.  Tyler means the world to me, and to see his legacy and impact on this world continuing on brings my caregiving experience full circle.  Thank you all so much.  I speak for Tyler as well.

Tyler's Bibles has been an awesome success.  We continue to receive donations and gifts from Tyler's fans!  Recently we have done a fundraiser where my mother-in-law bakes her famous sugar cakes for $10 per dozen.  My job was to sell orders through my undeniable charm (cough...cough) and stay out of the kitchen when they are made.  My mother-in-law my be short but I don't mess with her!

But I want something almost as cool.  With so many blog readers in Russia I want to send a free dozen for the first Russian reader who responds.  Send an email to Tom300824@verizon.net and if you are the first Russian to request a dozen sugar cakes I will send them free of charge.

Despite the world climate and politics, disabilies are a universal struggle, and 57,000 loving, wonderful people prove that.

Be well and God bless.    Tom

Wait World Where Are You

-A poem by Tom Klinedinst

Hey wait world where are you?
My son needs your help
He's never been on Facebook
He has no need for Yelp

Wait world where are you?
We pay ballplayers by the ton
Millions to buy their loyalty
But not a morsel for my son

Hey world where are you?
There's cash to start up wars
We find money to kill us off
But there's none to open doors

Hey world where are you?
So many with so much need
But all we see is bigotry
And never ending greed

Hey world where are you?
You forget about the weak
As long as you have your share
You turn the other cheek

Hey world where are you?
We brag like we are great
Yet people go without a meal
Living in impoverished states

Hey world where are you?
When do we do our part?
Our vets are dying EVERY DAY
Unnoticed by the jaded heart

Hey there world it's time to stop
It's time to stand for what is right
It's time to set priorities
And vow to join the fight

God protects the weakest ones
And asks we do the same
When we fail the ones in need
We are failing everyone.

Be well and God Bless.  Tom

5 Things I Learned as a Caregiver

Good Evening!

Tonight I was considering the things I learned as a caregiver.  I came up with 5 things I probably would not have learned on my own had I not cared for Tyler.

#1-  Being a caregiver separates those who really love you from each the pretenders.  We have all heard that when the chips are down you find out who your friends are.  Well...multiply that by 10 as a caregiver.  The best example I have is my in laws.  They freely admit that they are not specially equipped to care for a special needs person, and yet they put that aside and said they would use love and effort to be there for us any time we needed them.  I could also call this point "I'd rather have 4 people who really loved me than 40 people who merely said they did"

#2- People are generally better than I gave them credit for.  Over the last 25 years I have far and away seen more people go out of their way for Tyler than I ever imagined would.  Most people will hold a door, lend a smile, or show support wherever they can.  Of course I have come across some buttholes, but they are in the thin minority.

#3- If you don't become your own advocate you will be screwed.  Every agency has 100 employees who knock door-to-door every day and tell special needs families what they are eligible for.  You haven't seen one on your street?  That's because it doesn't exist.  It's up to US to ask questions, research, and claw for every benefit we can get.  The more educated you make yourself, the better things will become.

#4- Being a team player pays off at every turn.  I will be blunt here.  Nobody does favors for an asshole.  Think about it, we all have a neighbor who acts like a jerk, or a coworker, or a family member.  Do we go out of our way to help them?  No way.  But similar people who help you or treat you kindly you will do anything for them.  It's human nature.  When you carry a kind and team-oriented attitude your special person will receive better care.  The respect you give will be the respect given back to your special person.

#5- Your health matters...a lot.  Even in the best of times, humans are generally fragile.  Or fra-gee-lay if you have watched Christmas Story as often as I have.  There is a balance that must be maintained or the body and mind will start to reject your personal plan and start going into business for itself.  We can tell ourselves anything we like, but our body has a way of making decisions on its own.

The smartest people I know are the ones who do their very best and then once a situation is over will sit back and evaluate what they can use as teaching moments.  They know when they need to be a changing force, and when they need to be willing to change for themselves.

Figure out as a caregiver what each experience is trying to teach you.  Be willing to be open minded and accepting to where the story takes you.  Above all else remember that we are serving another person, and their needs come before any personal feelings.

Be well and God bless.  Tom