Wednesday, November 28, 2018

Christmas and Autism

Good Morning!

Christmas is on it's way which creates a bittersweet time for the special needs parent.  Its easy to concentrate on what we cannot do, or what our child cannot understand during the holidays.  We can tend to have this Rockefeller Painting imagery of what we want Christmas to be for our family.  Its this unintended setting of expectations that can lead to our disappointment.

For our family, Christmas was made more complicated by Tyler's worsening behavior during the winter months.  As I've discussed many times, Nov 1 - Feb 28 were always his "dark period".  Regardless of what we tried he was extremely agitated and edgy during this time of the year.  Christmas, with the added stimulation that he didn't really understand, seemed to just contribute to further behaviors and frustrations.  I recall it being so bad one year that I had to stay upstairs with him while everyone celebrated the holidays downstairs.  To this day Tyler often doesn't open his gifts for days or weeks after Christmas because he just doesn't WANT to.

I don't remember Rockefeller painting a Christmas scene that looked like that.

So what does Tyler need from Christmas?  What does he really want?  As with so many subjects, we have had to separate what WE see as ideal, versus what is ideal for him.  

  • He wants security in the arms of his family.  He wants to feel comforted in a world that is scary to him, especially when it is cold outside, lights are blinking, and there is a dang tree inside of the house!


  • He wants his trusted people around him.  He enjoys seeing loved ones, his church, and close friends who give him special gifts like smiles and hugs.  These are gifts he fully understands.


  • He wants warm food, warm clothes, and a warm bed.  
Stop and read those 3 points again.  When I wrote them, and read them again, I wondered who really understands the real gifts of the season and who doesn't!  The greatest gifts for him are warmth, peace, love, and security.  What a simple and profound statement.

With all of this in mind, we have scaled back what WE believe Christmas should be for him, and worked to make sure he was getting what he really wanted.  We don't shower him with material things or make him open a bunch of presents.  Instead, we get him perhaps one or two things that will ensure his security and comfort.  We make sure we, and his loved ones. see him around the holiday and tell him how very much we love him.  And most importantly, we ensure that he always has a life where he is cared for and respected.  

It's not a mystery when you really boil it down....its just providing the gift of security and love. 

Be well and God bless.    Tom





Wednesday, October 31, 2018

Halloween

Ah Halloween....a time of trick-or-treating, parties, fun!  Unless you have a child on the spectrum that is.  Not to be a killjoy but Halloween marks the beginning of the holiday season, which can add additional stress to the already stressful life of those with special needs.

When Tyler was younger we INSISTED that he go trick-or-treating like every other kid.  After all, we wanted him to have every typical experience that every other child was able to have.  So....we dressed him up (got kicked in the process)....watched him absolutely hate whatever it was he was wearing....dragged him out the door (still kicking)....gave him a pumpkin bucket (for him to hit us with)...walk to a neighbors door (which he kicked)....have him hand them the pumpkin and walk away (still swinging).  We repeated this "fun" about 3 more times before we said we had all had enough for one evening.  We tried this for a few years before we got the hint that maybe this wasn't his idea of a good time.  

I don't mind that we TRIED, after all you should always TRY, but perhaps we should have adjusted sooner to something more in his comfort range.

Another interesting topic that comes up at Halloween is whether a costume is "offensive" or not.  Specifically it was reported that Shawn White (snowboarder) dressed as "Simple Jack" from the movie Tropic Thunder.  To quickly explain, Ben Stiller plays a fading actor who once took a role as "Simple Jack", much along the lines of Forrest Gump or I Am Sam.  He plays a mentally disabled young man.  The movie bombs and he is ostracized for how bad it turned out.  Ben Stiller's character is a parody of a struggling actor trying to land that one memorable performance.  In fact, Simple Jack is a parody character being played by a parody actor.  I read an article and it explained that the Special Olympics made a statement that they were disappointed and felt that this characterization was harmful.  I think that's fair.  Shawn apologized and said he meant no harm to anyone in the special needs community.  I believe that too.  I don't think this is the sort of thing we should vilify him for quite honestly.

So where is the line between parody and mockery?  That is not something I can answer.  I know that personally I consider intent in someone's words or actions.  Shawn, I can only assume, was trying to be clever with a funny movie character parody.  The problem with that is, if you never saw the movie, he looks like he is playing a mentally retarded person for Halloween...which isn't funny at all.  

As special needs parents we are going to be more sensitive to things for sure.  My advice is to consider the overall character and intent of a person's actions before passing judgement.  Mistakes happen even to well-meaning people.

Enjoy a safe and happy Halloween!    Tom 

Tuesday, October 30, 2018

Defining Affection and Love

Relationships are complicated even in the best of circumstances.  "Typical" individuals can have a difficult time expressing themselves, especially in a way that other people WANT them to.  Think about it, we all interpret expressions of love from our own viewpoint.  After all, it's what our heart knows!  So when someone else's expressions don't fit into that mold, we may feel slighted, or misinterpret what those things really mean.

I often relate things to the movie "Rainman" because while the movie is certainly not perfect in it's depiction of special needs relationships, it does have some shining moments where it pinpoints things exactly.  Case in point, Charlie (Tom Cruise) teaches his autistic brother how to dance.  It is a sweet moment where the brothers connect in a new and profound way.  At the end of the song Charlie reaches out to hug Raymond, who immediately recoils and panics.  Charlie is left feeling confused and dismayed.  But here is the important part, by the end of the journey Charlie learns how to be affectionate with Raymond on HIS terms, and the two were much happier.  Charlie learned that by caring for him and about him, along with very subtle physical contact, he could gain Raymond's trust and affection.

Let me relate this to my own Tyler.  Right now Tyler is in a point of his behavioral cycle which is not his happiest or warm-and-fuzzy-ist.  Of course when the family sees him at church on Sunday we are excited!  We miss him and we want to squeeze him!


At the moment, he isn't sharing our enthusiasm so he gives us a quick hug and heads for the exit to get back to his home.  We would be fooling ourselves to say that, while we fully understand it, we don't feel hurt by it.  We want him to understand OUR love and OUR affection and we want him to give it back!  But so often being on the spectrum doesn't translate that way...or perhaps at all.  We tell him we love him, give him all the hugs and kisses he can stand, and we send him on his way.  Right now its what he needs, and that is ultimately what matters most.

So take heart if the loved one you care for doesn't quite receive or reciprocate affections the way you would hope they would.  Most likely it isn't personal.  Remember that the messages they process are way different than how we process them.  To be successful as caregivers we have to remember to love them in terms that they can understand and trust, and if you can do that, it may just open the doors to a better relationship.

Be well and God bless.

Tom 

Monday, October 29, 2018

Cecil and David Rosenthal

Cecil and David Rosenthal went to church on Saturday in a quiet, sleepy town near Pittsburgh.  As special needs brothers in their 50's they were inseparable.  They also loved to attend their church, where they were well-liked and appreciated.  They never missed a Saturday service.  They were loving, gentle, and inspiring men.

On Sunday I couldn't help but watch my son as he was sitting in church.  It was impossible not to think about the synagogue in Pittsburgh and how those worshipers were in their sanctuary just like him.  They felt a sense of safety and belonging.  They were innocent, just like Tyler.  And as it turns out, they were vulnerable, just like Tyler.

It's a nightmare that as special needs parents we think about more often than we would like to....what if this happened in my church?  What if this happened at his school?  What if this happened to my son?  How do I protect him?  

Cecil, David, and Tyler rely on all of us to provide a safe world for them.  They rely on US to be their voice.  When they aren't getting the services they need, we have to stand up for them.  When facilities don't adequately provide for their care, we have to stand up for them.  When laws need to be evaluated and changed, it is up to all of us to fight for that change.  Now more than ever as caregivers we must make our voices heard.  Every year the need for quality care increases while the funding continues to be decreased.  Every day the negative rhetoric intensifies and the positive messages we need to hear grow more silent.

Cecil and David need to remain in our hearts but more importantly, they need to start being at the core of who we are.  Our decisions every day....how we treat each other...our priorities...our leaders...need to start and end with values like compassion, faith, and understanding.  Without these values we cannot honor Tyler or Cecil or David.  We have to be willing to be the voice for what is right.

Our boys are depending on it.  Cecil and David....this is for you.  

Sunday, October 28, 2018

Why Words Matter

Words matter.  Words can be a powerful and wonderful tool to inspire others.  Words record who we are and where we have been.  We can use words to comfort our friends in their time of need.  How often does a smile and a kind word from a stranger make us feel good about ourselves?

Some of my fondest memories in the years Tyler was at home involve times when strangers expressed kindness and compassion toward Tyler.  I remember being in a restaurant and an older couple approached our table on the way out.  The gentlemen asked if he could give Tyler a few dollars because he was inspired by how well behaved he was.  Those are the experiences that stay with me as though they happened yesterday.

Words can also be devastating.  I remember how we felt when a caregiver told us that a young boy and his father made fun of Tyler when she took him out to eat.  Fortunately Tyler didn't realize he was being mocked, but it hurt to know that someone would do that to him.

There are many of us who are leaders in one form or another.  Some lead families, congregations, businesses, towns, states, or countries, and I truly believe it has to start with all of us.  We have to be aware of what we say, and how we say it.  We fool ourselves that people like Tyler don't hear us or understand us, but they do.  They are hearing what we say, and watching what we do.  That's why I believe we need to speak to each other like our sons are listening, and our daughters.  When we stand before them and represent something, we owe it to them to do it with dignity, love, and humility.  Unfortunately it seems we are seeing less and less grace and more and more contentiousness.  For Tyler, and for everyone who so desperately needs us, we have to stop this cycle.

Words do matter.  Its time that we remember that,  and its time that we use our words to bond, and to heal, and to teach the right things.  Our children deserve that.  Tyler deserves that.

Be well and God bless.   Tom 


Saturday, October 6, 2018

Not Gonna Miss You

Good Evening,

I try on occasion to recommend movies or documentaries that I feel somehow break uncharted territory in the caregiver experience.

See "I'll be me" for an amazing journey.  You will nod your head, laugh, and cry.  You will appreciate how an amazing and complicated man can suddenly become vulnerable and dependent on his family. And as you watch this transition you will recognize every one of the emotions which range from loyalty to exhaustion.  From courage to fear.  From hope to reality.

Glen Campbell was a complex and talented man.  He was far from perfect.  But when a diagnosis of dimension threatened to end his life story, he and his family decided to take charge of the final chapter.  The result of this decision was a perfect representation of what a caregiver and the cared for experience as the disease ruthlessly marches on.  It's a story of love, devotion, decline, and loss that we will be forced to face for ourselves,  But it is also a testimony of what it truly means to be devoted to a person with special needs.


Thursday, August 23, 2018

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

Wednesday, August 15, 2018

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

Saturday, August 11, 2018

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



Sunday, August 5, 2018

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

Thursday, July 26, 2018

And Then This Happened

Its been a rough week for all of us....

Tyler currently is not feeling well.  His digestive system will slow at times and become filled up with gas.  The result is he becomes quite bloated and will sometimes even get sick because things aren't able to cycle through.  He also has ringworm which is being treated with a cream at the moment.  Poor guy....he deserves a free pass from ever getting ailments.

On Monday I left work as usual, hopped in my Jeep, and it wouldn't start.  In fact, it didn't make a sound, turn over, or anything.  We tried to use jumper cables to no avail.  We were able to pop the clutch and get it to start just enough for me to drive it to my mechanic.

But OH NO...this was not the end of it.  Since we have been getting rain by the buckets over the last week, our basement decided to become an indoor swimming pool.  Carpet ruined, miscellaneous items ruined, drywall ruined.  What a mess.

Shall I go to the rooftop and scream at the top of my lungs?  Shall I go home and yell at the dogs for no reason?  Shall I throw a tantrum??  You know what I did?????

I remembered how blessed I am, and everything felt okay.  I remembered that needing to fix my Jeep means I am blessed enough to have one.  Needing to repair my home means I have a roof over my head.  Friends, family, and co-workers offered to lend a hand.  Neighbors continue to ask how things are going.  That means we have people who care about us and love us.  Tyler is safe and supremely cared for even when he feels bad.

Carpet is just fabric and padding.  Something that you walk on.  A Jeep is just a piece of machinery that helps you come and go.  

The important things can never be lost no matter how much it rains. 

I am blessed.

Be well and God bless.     Tom  

Monday, July 23, 2018

Gifts

On Sunday Pastor Dave talked about GIFTS.  The gifts being talked about were those that we can lend to the church, and to mankind.  That each of us are born with, or develop, certain abilities that we can share with other people.  

My mother-in-law and I are doing a sugar cake fundraiser for Tyler's Bibles.  Our goal is to raise about $400 so that 10 more Bibles can be purchased for those who need them.  My part is to come up with the idea, bring it to life, and sell it.  Her part is to make the cakes.  We are using our particular gifts in combination to reach our goal.  Could Mom do my part and I do hers?  Probably to some extent....but we are better if we stick to what we know we do well.  Mom believes this so emphatically that she has barred me from the kitchen when we make these fundraising cakes.

We cannot overlook Tyler's gift in this endeavor. He was given a smile, a spirit, a soul which speaks to every person with an open heart and an ability to listen to it.  He shines love from his heart that inspires people to use their own gifts.  Perhaps this is the most blessed gift of all; inspiring others to use their gifts.  It is love perpetuating love.

  My wife on the other hand doesn't know what her gift is.  In fact, she believes (incorrectly) that she may not have one at all.  She would be the first to tell you she isn't a public speaker, inventor, teacher, or writer by nature.  What she forgets is that she is one of those rare people that succeeds in supporting others.  

To explain, Pastor Dave is a gifted speaker.  BUT, unless he had a solid supporting cast around him doing great work it would be exponentially more difficult to deliver the message.  He has to have someone operate the sound and video board.  He needs a Music Director.  He needs Joan to set up the board.  He needs Cele to work behind the scenes to have food ready and do the nursery and generally keep him from getting out of line.

A GIFT is not necessarily standing a public and visible thing, it can simply be providing the foundation for which another person can stand and use theirs.  My wife gave Tyler the very life that he now uses to inspire others.  She keeps my world together so that I can chase inspiration where it leads me.  

Love each other....like Tyler does....and I promise you will discover your gifts very quickly.

Be well and God Bless.    Tom

Sunday, July 15, 2018

Eye Saw the Light

I was at the eye doctor yesterday.  The doctor and I continue to ponder how much longer it will be until I need to have reading glasses.  False teeth and a rocking chair are right around the corner!

As I have written before, it seems that I have a habit of striking up conversations with other special needs parents.  This day would be no different.  

After the appointment I went to the check-out area.  I struck up a light conversation with the young girl (lets call her Heather), telling her how much I like Dr. Lisa.  She proceeded to tell me how well the doctor always treats the staff.  Heather continued to explain that she is a special needs mom, and the doctor supports her in so many ways.  I could tell that without that crucial emotional support Heather's life would be much more difficult.  I eagerly gave her this blog address and welcomed her to come read any time.  I hope God blesses her with peace, comfort, and strength for all of her days.

An important takeaway is how valuable Dr. Lisa is in her life.  Because the doctor supports her and allows her the ability to tend to her child as needed, Heather has less pressure in her life.  In the work history of both Robin and I we know what its like to have supportive bosses, and what its like to work for non-supportive bosses.  The difference is incredible.  Many special needs parent WANT to work hard and earn a decent living while at the same time being there for the child as much as humanly possible.  It's like living a double life really.  

For those of us who play the roles of boss, or neighbor, or friend, or any other role alongside of a special needs parent, please remember how just the slightest show of support will change their lives.  And if you are a special needs parent, do everything in your power to work for people that will give you that support.  After all....you and your child deserve it.

Be well and God bless.   Tom


Saturday, June 2, 2018

Update Time!

It occurs to me that I haven't done an update for quite some time.  So how is that Tyler doing?

Tyler is doing very well right now.  I always say "right now" so I don't end up jinxing the delicate universe that surrounds him.  Each time we see him he appears to be very happy and content.  He always looks very healthy, clean, and sporting nice clothes.  We get our weekly smiles and hugs at church and he is off to his home.

Within the last few weeks I had an update meeting with the group that provides the residential care for him.  We also had the opportunity to sit down with his Case Manager and review how things are going.  All indications are that Tyler is not only doing fine, but he continues to exhibit a willingness to learn how reach out to others.  For example, he always needed to sit at a separate table from everyone else at his day program.  Now, he enjoys sitting with the group.  Not only is he sitting closer to everyone, but the day program reports that he has a few other individuals that he has more interaction with.

On another subject, Tyler's Bibles has been very successful thus far.  As of now there have been about 15 brand new beautiful Bibles distributed to members of his congregation that are in need of one.  Donations have come in from near and far to help supply more Bibles in the future.  We will not stop until we have new Bibles in the hands of everyone who is seeking one!  If you need the information on how to donate some money to this cause, please refer to the last post titled "Tyler's Bibles".

Meanwhile, the rest of the family is doing well.  We all enjoy the summer weather that has finally arrived.  There is nothing like hearing the kids splashing in the pool, cooking burgers on the grill, and sitting out by the fire pit as the sun goes down.  Samantha is loving that her brother is hugging her every week at church.  I think it has really helped her resolve the issue of him being aggressive with her in the past.  Oh...and watch out because I promised her that she can write another blog entry very soon. 

Speaking of writing....I did manage to get an article published in a magazine.  The magazine is called "Philadelphia Row Home Magazine" and features stories on the neighborhoods of Philadelphia.  You can also google them and find that article plus another blog article that I sent them.  It's not exactly "Time" magazine but I'm proud to see my words in the pages of a magazine! 

Lets all hope for a summer that is safe for everyone.  Let's also pray for peace and love in our world.

Be well and God bless.   Tom

Sunday, April 22, 2018

Tyler's Bibles

I'm very pleased to report that the Bibles that Tyler purchased for the church have arrived.  They are beautiful Bibles with a personalized stamp from Tyler.


The response from the congregation has been overwhelming.  So much so that people receiving the Bibles are donating money to defer the cost, which allows us to buy more Bibles for even more people.  We are turning it into a scholarship fund program that will continue to generate funds and turn it into more Bibles.  The initial goal is to provide Bibles to anyone in the congregation.  The longer term goal is to provide Bibles to people outside of the church that want to study and hear the word.

As I said a few weeks ago, I'm so proud that Tyler has been able to spread the message in such a special way.  It just proves that all of us, every single one of us, has the ability to reach out to other people and answer their calling.  

I'm not panhandling for money, but if Tyler's story moves you and you would like to donate something to Tyler's Bibles, please reach out to me.  Or even if you are moved to just comment about his story, please contact me at Tom300824@verizon.net.

Be well and God bless.    Tom


Saturday, April 21, 2018

Dreamer

I grew up listening to hard rock and metal music.  One of my favorites has always been Ozzy Osbourne.  Now before you check to see if I have horns growing out of my head, or if I bite the heads off of bats....I'd like to explain....

Ozzy is a flawed individual, which is putting it mildly.  Over the course of his life he has been a magnet for controversy.  Much of it has been well deserved, but some of it has been fantasy floated as facts.  No doubt that his drug and alcohol issues are the stuff of legend.  His marriages have always been full of difficulties.  So why on earth would I mention him in my blog?  Allow me to continue...

Our church lost someone very suddenly a few weeks ago.  She was scheduled for a surgical procedure and she died due to a complication that was unexpected.  I'm sure she planned things for after the surgery.  But she didn't get the chance, and just like that her life was over.  So what does this have to do with Ozzy?  

I often think about the life I have led.  And I think about the life I hope to lead over the next 30 years (God willing).  And when its all over and I have to account for where I have been and what I have done, will I be satisfied that I made the most of it?  After all, we are given ONE life to live and once it is over, its over.  I wasn't close enough to lady from my church to know how she would answer that question.  I know she served God and the church faithfully so perhaps she lived a very fulfilled life.  I certainly hope so.

As for Ozzy, he has traveled the world.  He has made millions of fans happy over the years.  He is actually a very empathetic individual who hates war, hates the destruction of our planet, and hates man's inhumanity to man.  He is a history buff.  He has earned a Grammy, induction to the UK and US Rock and Roll Hall of Fame, and has earned acclaim for two television shows.  I have a feeling he will leave this earth without a regret in his heart.  Saint Peter may just shake his head in disbelief as he walks by.

So ask yourself these simple questions....if you left this earth today, would you feel as though you lived life to the fullest?  Would you feel as though you left all of the cards on the table and had nothing left to do?  Will you feel as though you sampled all of the wonders that God has made for you?

I'm not sure how to answer those questions right now.  If I were to be called home as I sat here tonight I think I would feel like I left some places unseen, and things undone.  I admire people who accomplish a lot and live long lives.  I feel like they leave this earth and once they arrive in heaven they won't feel cheated.  That's an awesome thing.

Perhaps we should all ask ourselves this question:  if you were called home RIGHT NOW as you read this, what 2 places/things/people would you feel like you left incomplete?  What are you leaving on the table?

We all have to work and take care of responsibilities.  Its not like we are overflowing with money and time.  BUT, that will be of little solace when everything is over.  

Be honest about the fact that we have no idea how many days we have left.  We could all be called home tomorrow.  Make sure that when you arrive at the pearly gates that Saint Peter looks at you and gives you a nod and a shake of the head, amazed at everything you did in the short time you were here.

Be well and God bless.   Tom




Monday, April 2, 2018

How Tyler Contributes

Some time ago I explored Tyler's relationship with the church, and with religion in general.  I theorized that Tyler benefits from going to church by feeling the fellowship and acceptance of the others in the congregation.  Just having God's love surrounding him is something he may experience in ways we do not know about.  Its obvious that he enjoys his time there and seeing his friends and family.  He enjoys the music.  And he enjoys a feeling of participation.  If I knew nothing else about how he felt on the subject, this would be enough.

The sad truth is, however, that many churches would not welcome Tyler with open arms.  Even fewer would go out of their way to accommodate and invite more special needs people to attend.  Fewer still would make Tyler a member and baptize him.

This discussion is very much at the heart of why I had left organized religion for so long.  I believe (and I represent only myself in these words) that many churches and congregation members have the absolutely wrong idea about what a congregation should look like, or act like, or aspire to.  Church is not a fashion show.  Its not a place to gossip, or to judge other people.  Its not about gourmet coffee and assigned seats.  

Instead, we should ask ourselves "how much do we reach out to invite the poor, the addicted, and the disabled?"  These are the people that we are called to serve, and these are the people that we should embrace having around us to hear the word.

Back to Tyler.  While I had addressed the points of how church has impacted Tyler's life, I hadn't given enough thought to how he impacts the church.  How does Tyler contribute to his congregation?

The entire family tries to contribute in different ways.  Samantha helps with communion at times, and participates in the youth choir.  My wife helps make food for events.  My wife's parents make food and attend various groups.  I collect canned goods, host the spring yard sale, and assist with security.  I don't cook because we want to encourage people to come, not scare them away.  These are all just small ways we try to give back.

What about Tyler?  How could a young man who is non-verbal and severely disabled give back to others?  

He is going to give them Bibles.  You see, Tyler has a monthly amount that he gets to cover his rent and other expenses.  What remains is for us as his guardians to decide how to spend it on him.  It will often go for clothes, special foods, etc.  Or he shops for x-mas gifts for the family.  Its a challenge at times to think "what would Tyler want?" when he really has very little regard for material items.  One thing I do know about Tyler is that he would want to enrich the lives of those who share their time with him.  He loves to make people smile and to be happy with them.  So, on his behalf, we will be donating some Bibles to the church for those who need a new one or can't afford one.  It will be stamped on the inside cover that it has been donating with love by Tyler.  

Tyler is going to place a beautiful gift in the hands of those who need it.  That gift may help another person open their hearts and change the course of their spiritual journey.  

We are so proud that he uses his very attitude, presence, and perseverance to inspire those around him to continue to progress in their faith and their lives.  We are proud that he inspires me to write and spread his story of love as far as the internet will reach.  And we are proud that he can give such a wonderful gift to those who are looking for the word.

Be well and God bless.    Tom

Friday, March 9, 2018

Happy Birthday - Here's Your Panic Attack

A co-worker and friend of mine had a panic attack this week.  It was extremely scary for him and quite debilitating.  Fortunately I was able to help him because I too have suffered from panic attacks.  

About 7 years ago...on my birthday...I experienced my first panic attack.  Its an experience I will never forget.  I was walking in the Chicago Midway airport toward my gate when I felt my pulse pick up.  I thought maybe I had had a little too much soda and the caffeine was messing with me.  As I walked a little farther I felt myself getting short of breath and my heart racing.  No matter what I did I couldn't settle down.  It was the feeling of needing to run straight out of the building and into the fresh air.  I even considered that I was having a heart attack.  

Now, let me tell you how the typical male mind works.  I was in the middle of my first panic attack, not knowing it was a panic attack and actually afraid I was having a heart attack, and I was concerned that I would miss my flight.  I knew that the flight to Memphis was the last flight of the night and if I missed it I would miss my morning training and have to answer for it.  Heaven forbid anyone know what was happening to me!  So I boarded the plane and passed out as soon as I sat down.  

Those who have never experienced a panic attack don't understand the overwhelming signals your mind is getting.  Its like a circle of people pushing you from one side to the other, screaming in your ear, and slapping you faster than you can defend yourself.  Its a feeling that you are going to die, while knowing that you are not really going to die.  The signals to your brain don't match anything that is happening.  

A problem with panic attacks is that they may not seem to make sense.  My opinion goes like this:  when we try to swallow our issues and anxieties we push it down.  The next time we push it down.  And again.  And again.  And eventually there is no more room to push it down.  Just like a garbage bag, if you keep smashing garbage into it, you will run out of room, and the next time you mash more garbage in, the bag splits.  I personally believe that a panic attack is when the brain makes the decision that its filled to the top with stress and it decides to kick some back.  

For a long time I feared the panic attack.  And my anxiety LOVED THAT!  It basically fed on itself.  I got anxious about having an attack, which made me more likely to have one.  The more I had, the more afraid I became, and the more I had, and the more afraid I became, and the more i had.  it was a disorder that fed itself!  

Caregivers are especially vulnerable to panic attacks.  We worry every minute of every day.  And when we don't worry, we worry that we aren't worrying.  Its a vicious cycle.  It leads to panic disorders, depression, physical ailments, and suicide.  

So how do we combat this?  How do we keep ourselves from becoming so overwhelmed?  For me it was about owning it.  It sounds easy enough, but most humans hate to admit their weaknesses.  We might be afraid that people will look down on us.  Men are afraid to look like they have any weakness at all.  We might be afraid to compromise our jobs.  The problem is that hiding it makes matters much worse.  Its an added pressure when our garbage bag is already full.  I found that being open about it helped.  As a matter of fact, when I opened up about it, other people admitted they had the same issues.  Still others offered to help me through my vulnerable situations.  People didn't judge me like I thought they were going to.  Once I came to terms with it and opened up about it, the anxiety lost much of its power.  

Here is my advice to those fighting anxiety and panic; you have to take away the power that it has over you.  By admitting it, owning it, and dealing with it head-on, you fight back.  It wants you to feel afraid and ashamed so it can come back on you.  When you talk about it and comes to terms with it, it loses its grip.  I've already told groups that I speak to that I have anxiety and to simply ignore me if I pass out, and we laugh about it for a minute, and suddenly the anxiety loses its grip. 

Anxiety wants you to lose your faith, shrink in fear, and empower it.  Do the opposite, have faith, stand tall, and take the power away from it.

Be well and God bless.    Tom

Sunday, March 4, 2018

Fixing the World

Many of us are facing these difficult times wondering how things will ever turn for the better.  I look at Tyler, and I look at Samantha, and I wonder what things will be like in 5 years, or 10, or 20 if we as a society remain on the course that we are on now.  It seems as though our willingness to care for each other is at an all-time low.  Somehow we have become empowered by finger-pointing and disrespecting one another.  Caring for each other is seen as a "weakness" for some strange reason.

How do we fix this?  Where do we start?  It is such a big world and there is no way a single person can even make a dent in all of the problems we face today.

We fix the world one neighborhood at a time.  Most great movements are started from the ground up.  We may not be able to control what happens states away and countries away, but we can control what happens in our back yards.  It simply requires a willingness to be different.  It requires a small group of people to decide that they want to live differently than the rest of the world is living.  

Our neighborhood is a good example for others to follow.  When there is a significant snow, nearly everyone fires up the snow throwers and clears the driveways and sidewalks.  Young kids walk the streets looking for people that they can help dig out.  

Another great idea that we have done here is to have a neighborhood Facebook page.  On that page we alert each other to dangers, buy and sell from each other, and help each other find lost pets.  We've used it to collect canned goods for families in need.  We've collected clothes for homeless families.  We've raised money for school events.  In the process of doing all of these things we've gained a sense of pride in the power of a good neighborhood.  We have community yard sales, and Halloween is like a block party.

There is incredible strength in the power of a community.  When a community watches out for each other and helps to report problems, the word gets around.  When a community takes pride in the appearance of their yards and common areas, it catches on.  When people next door to each other CARE about each other, it multiplies.  Over time the community gets a reputation as a "good neighborhood" where people want to live.  

We can't change the world, but we can demand respect and compassion in our own homes.  We can be good neighbors, and good stewards of our streets.  And if we do those things, we can change a piece of this world.  With God's help maybe one piece will connect with another, and another, and another.

Be well and God bless.    Tom

Friday, March 2, 2018

Meeting Nicole

Robin, Samantha and I were waiting in the foyer of our favorite pizza place tonight, anxious to sink our teeth into some pizza and fries.  The door to the restaurant swung open and three ladies stepped in out of the blustery winds outside.  One in particular hollered out very loudly about the weather outside, almost to a degree that my initial reaction was to feel slightly annoyed.  But then I immediately realized that this was a special young lady.  And at this very moment I met Nicole.

Nicole immediately exclaimed that she was going to a horse show tomorrow!  She wanted to know our names, and she was overjoyed to see pictures on Samantha's Ipad.  Most of all it seemed she just loved the interaction.  In so many ways she reminded me of Tyler.  They both enjoy long car rides, they both enjoy looking at pictures, and they both have times where their speech volumes can peak at pretty high volume.   Best of all, they both seem to enjoy their importance to other people.  They like being liked.

Her Mom was very open about talking with us and sharing a little bit of their story with me.  We were happy to share Tyler's story as well.  As it turns out they are both the same age and live in similar size residential homes.  Its amazing how much we had in common in just a ten minute interaction.  I was very proud of Sam and how well she interacted with Nicole as well.

Once we were seated in a booth, Nicole's family was seated in the booth next to ours.  Every once in a while I'd look up and Nicole would get excited and wave.  She even stopped and sat with me for a moment on the way back from a potty break.  I think I had made a friend for life.

On our way out we stopped to show them a picture of Tyler, and Nicole grabbed my phone and yelled "Oh my..I LOVE him!".  We smiled and talked about that all the way home.

As I've said before, I've gotten to meet so many wonderful special needs families in my travels.  It's comforting to make contact and assure each other that we are not alone out there.  

I can honestly say I will never forget Nicole and her family.  They are the very definition of grace, beauty, and dignity.  I'm proud to have crossed paths with them, and I hope Nicole has the greatest horse show ever.

Be well and God bless.  Tom

Saturday, February 24, 2018

Happy Birthday Buddy

Tyler,

This week you turned 26.  It's funny, I still remember when you were just a small boy.  It doesn't seem that long ago that I walked an 8-mile benefit with you on my shoulders.  It doesn't seem that long ago that you walked next to me through the park.  It doesn't seem that long ago when we were both young and uncertain of who we were and what the future held for us.
Seeing you today was a lot of fun.  But at the same time it is hard.  Its an opportunity for all of those anxieties to come roaring back.  I sense the same thing from you.  You love seeing all of us but you have to keep moving forward in your life.
Just please remember that I love you every single day of your life.  You are never forgotten, and we talk about you often.
26 years old.  You are a beautiful young man with a tremendous heart.  Your courage is what sets you apart from anyone else I have ever known.  Your spirit is no less than amazing.



Tuesday, February 20, 2018

Tribute to Dylan of Sandy Hook Elementary

**Post was initiated during the Florida school shooting last week**

I always want to be very careful when I talk about current events.  I don't assume that everyone shares my opinions and I certainly don't share the common public views on many things either.  But when something is on my mind, and in my heart, I write.  Its just who I am.

There is, right this moment, an active shooter situation in a school in Florida.  The details are very scrambled, but the overall consensus is that there will be considerable casualties involved.

I wonder....when is ENOUGH going to be ENOUGH?

Plenty of people, like me, will step forward and beg that laws be changed to protect innocent lives.  Most citizens will agree that background checks are an acceptable form of protection.  Many of us will plead that items such as bump stocks and assault style weapons be restricted from those in the general populous.

There is no greater duty as parents and citizens than to protect our children.  There is no amendment, no law, no statute, and no perceived right greater than our responsibility to our children to provide a safe environment for those innocent lives.  To me, there is no debate, we must take whatever steps are necessary to ensure the safety of our children.

Tyler's day program locks down every day.  In order to gain access to the building, a person must be seen and buzzed in.  Of course this does not guarantee his safety, but it helps.  But if someone were to enter that space with the intent to kill, he would be completely at the mercy of fate.  Like the children of Sandy Hook Elementary, he would have no means to defend himself....or even the instinct to do so.  

It is long past the time to wake up on many fronts.  We need to have better access to mental health care.  We have to evaluate our parenting priorities and the amount of exposure our children have to gratuitous violence.  And we have to have common sense weapon protections for innocent lives.  

The facts are undeniable....innocent children die needlessly due to gun violence.  Innocent children die needlessly due to gun suicides.  Innocent children die needlessly in accidental gun discharges.  And innocent children die due to domestic gun violence.  

Dylan Hockley was 6 years old when his life was taken from him.  At THAT MOMENT, this country should have needed no other reason to change.  There should have been overwhelming anger and call to action when Dylan's family was torn apart by violence that could have, and should have been prevented.  

Society failed Dylan and his family, just as they have failed every victim at Sandy Hook, just as they did at Columbine, and so many others.  Our representatives failed them by accepting money from the NRA.  Worst of all we have failed them by not learning our lesson and allowing it to happen over and over and over again.

As Tyler's dad, and Sam's dad, I have questions that I want answers to:  why do we allow lawmakers to be bought by the NRA?  Why do we ignore the rights of the common citizen to go to church, school, and the mall without fear of being gunned down by assault-style weapons?  Why do we continue to reduce funding for mental health treatment?  How is it that guns have been upgraded over the last 250 years and yet the 2nd amendment has not?

If I could tell Dylan Hockley and the Hockley Family anything, it would be that he lives on in the hearts of those of us that believe in the right to live life in peace.  With that in mind, this post is dedicated to him.

If you would like to help or support a safer world for our children...please visit:
www.sandyhookpromise.org


Saturday, February 10, 2018

Never Waste Something Special

I realize that some days I go a little bit off topic, but when I get moved by a memory or a thought about something, I enjoy sharing it with the blog readers.

I ran a warehouse in Pa. for about 5 years.  And trust me when I say this, I had NO IDEA what I was in for when I accepted the job.  But I did know that I had a cast of people around me that I genuinely liked and was excited to do good things for.  What was so special was that they made it clear that they believed in each other and that they believed in me.  So from the first day that I took over I felt as though we had something unique, perhaps so unique that it would be a once-in-a-lifetime opportunity.

Shona was my Receiving Supervisor, but most importantly she was the heart of the group.  She was like the mom that a lot of us needed to have, even as grown men and women ourselves.  I'm very fortunate to run into her often, and when we do its as though we never left each others side.  She always told my real wife that she took pride in being my "work wife" making sure I took care of myself, and that I was always okay.  She is such a special person and hard worker that if I opened a business tomorrow I would call her instantly.

Jimmy was the Inventory Control Supervisor and my eventual successor there.  I'm fortunate to say that he also remains a good friend to this day.  Honest, smart, fun, and would have protected us no matter what.

Dave was a guy who was trying to figure out how to take all of the wonderful tools that he had and get them to work all together.  Hardworking, smart, and always with the right intentions.  The kind of guy any business would be proud to have.

Bert.  Oh Bert.  Bert was the class clown of the group.  You would never accuse Bert of working too hard and yet he was there for you every day, and he gave you what he had.  Bert is also extremely smart and an amazing wit.  Behind the rough exterior Bert has a big heart and a kindness that shows up almost every time you talk to him.  If we only cared about productivity Bert would not have lasted very long.  In fact, there was pressure on me from above to replace Bert because his numbers were lackluster.  But I always made the case for him that he was there every day, on time, he cared about his coworkers, his coworkers enjoyed him tremendously, and he could do everything in the building without errors or carelessness.  His value was far greater than simply speed.  Bert never left us.  In fact, when our operation relocated to NJ, Bert worked as long as he could until he was no longer needed.  I will never forget the day we finally told him it was over...he cried.  He cared so much for what he was doing and who he did it for, that he didn't want it to end.

We had other characters like Buffalo Bob, Kim, Deb (who was my enforcer and would have literally pushed me away to jump on a grenade), Ken, Paul (our talented DJ), Darryl (who said exactly 5 words per week), and on and on.  

The point of all of this is, we had a group that truly cared and respected each other.  Each with very different backgrounds and personalities, and yet we looked out for every one of us.  It was the most special 5 years of my career.  What makes me even more blessed was that I KNEW at the time that we had something amazing.  This helped me to make the most of it, and cherish it.  We took every opportunity to have fun with it, and help each other grow.

Hopefully most of these misfits (we affectionately called ourselves "the land of misfit toys) would say that they left that period of time having learned a lot about how people can and should treat each other.  I further hope that most of them would look at those 5 years with the great affection that I do.  

That experience taught me that when you have something very special, make the most of it.  Make it joyous and unforgettable.  It also taught me that each person is different, but no less valuable than the next.  Each person brings something very unique to the table and if you can celebrate it, it can add value to your life.  

I will likely never have a situation and a crew like that again.  But fortunately I have some lifelong friendships that will help me hold it close to my heart.

Be well and God bless.    Tom  

Tuesday, February 6, 2018

Care by Siblings

I'm about to enter into a sensitive subject.  I hear people say things like "I'm glad my autistic son has a younger brother who can always take care of him" and it really causes me to think long and hard.  

When we became pregnant with Samantha, I admit that one of the things we thought about was that Tyler would still have family after my wife and I are gone.  With her being 17 years younger than him, under most scenarios she will outlive him.  Practically everyone on both sides of the family are older than Ty, so we never wanted him to face a day where there could be nobody left to be family for him.  

This is a selfish thought on my part.  Of course I am hopeful that Samantha will feel that she wants to keep an eye on him someday, but in no way should she be held to that.  She is entitled to her own feelings, her own time, and her own life.  

So when I hear people say that it will be left to the siblings to take care of them, I see this as a dangerous and unfortunate way out.  I think for many caregivers they can't bear the thought of letting go of their child and trusting the system, so they comfort themselves by assuming another child will be willing to pick up the pieces.  Its an understandable thing, after all it is an excruciating thing to think about the day that we can no longer care for our disabled child.  It kept me up many nights wondering how he would manage after I was gone.

But let me be plain on this point....you are neither looking out for your special needs child, or their sibling, if you do not prepare for an independent future for both of them.  Their sibling should not be relied upon to pick up the baton once you can no longer care for your special child.  The sibling has every right to go to college if they wish, have a family, move to another state or country, and decide for themselves how they want to live their lives.  Hopefully this means they will also want to help, and be part of a protective family unit for the special person, but it cannot be a pre-arranged situation.  Because in the end, the odds are being helpful will be replaced by feeling resentful, unappreciated, and used.  

If you have ever made those statements, or you truly believe it is ok to assume that a sibling will take over as a caregiver, you need to stop and have a reality check.  All you are doing is serving your own self and your own guilt.  You are trying to deny the fact that your own mortality will change the course of your special child's care.  You are avoiding doing something that you know will be difficult.  All of this at the expense of the special child and the sibling.

I hope and pray that Sam will always love her brother and want to be family for him until he is no longer here. I hope she wants to someday be willing to be a member of the team that watches over his interests.  But Sam has a life of her own to live.  That will be her choice.  In the meantime we are setting up Tyler's life so that he can live without us if he has to.  

The choices have not been easy, but they have been the right ones for both of my children because I love them and respect them equally.

Be well and God bless.   Tom

Sunday, February 4, 2018

My Dream

I believe that it is important for all of us, whether we are caregivers or not, to have a dream for something that we would like to have happen in our lives.  I would like to share mine today.

Having raised Tyler all of those years the one thing that I sorely missed was being able to relax.  It may seem hard to believe, but even after 2 years of Tyler living in his new home and being well taken care of it can still be hard for me to gear all the way down.  Its an issue that I've covered in other posts, but its clear to me that my psyche became so conditioned to run at high gear, that its become a challenge for me to think any other way.  I still have dreams that cause me to panic....dreams about being in a place where Tyler is needing to exit but I can't seem to be able to get him out.  Or there are times where certain situations or sounds take me right back to the worry and hyper-thinking of being a caregiver.  

I'm also very discouraged by our society in general.  It sounds negative I know, but I really do believe that empathy and sensitivity are quickly becoming a thing of the past.  Humans in general are not willing to help take care of their brothers and sisters, but would rather only make sure their own interests are satisfied.  

One place that I find special solace is the beach.  I'm one of those people that seems to find some kinship with the sounds of the waves and the vastness of the sea.  When all I feel is sand beneath my feet and an ocean breeze against my face I become quiet in every sense of the word.  

With all that said, by dream is to have a small place of my own at the beach.  A place where eventually we can retire and spend our days walking on the beach, having a nice cigar, and reading books about things that interest me.  Nothing fancy, nothing stylish.  No Facebook, no politics, no complexity.  Perhaps just living a simple life, maybe a part-time job to remain busy and have a little extra cash.  Every day I will have the warm sun on my face, and not a single day will go by without hearing the sounds of the ocean.

This is what I dream about.  And this is very important to me because it keeps me thinking of how I could spend the latter portion of my years.  

Whatever you dream about make sure you keep it close to your heart.  Don't give up on it and certainly don't let anyone take it away from you.  

Be well and God bless.  Tom  

Saturday, February 3, 2018

Poem

You might think that you know me
But you don't
That you will get what I'm doing 
But you won't
My shoes have many miles
And they've seen a hundred trials
But no one seems to see the greatest point

You might think that you see me
It's not true
I only wish that I could
Just relate to you
Nobody is to blame
We just are not the same
I'm not the person that you thought you knew

You say you understand
And that is great
But the things I do
You just cannot relate
I live a very different way
Which consumes my every day
It simply is a caregivers fate

I will do my best and try
To be your friend
But every day I just don't
Know how it all will end
So much I can't control
It all just takes its toll
Theres nothing here that I can depend