Wednesday, December 18, 2019


Bullying is a subject that always seems to find its way into the news at regular intervals.  Schools are certainly trying to do what they can to control the issue, but they can't be everywhere all the time.  The solution starts at the home, and other entities have to do their parts as well.

I remember a few instances where Tyler was bullied.  Thankfully his environment was always very tightly controlled, but even with that, it could still happen.  One such issue was described to us as a typical boy holding onto the bill of Tyler's cap and refusing to let it go.  Tyler became angry and frustrated at the feeling, which caused him to become extremely aggressive until he calmed down.  Another such instance was in a restaurant with a caregiver, where a boy began mocking the sounds that Tyler was making.  An adult male, who was sitting at the table (I assume his father) began laughing and playing along.  Fortunately, Tyler didn't understand what was happening, but his caregiver surely did.

These are 2 extremely minor incidents, yet they made us feel absolutely horrible for Tyler.  The incident with the hat was a little easier to dismiss as stupid playground behavior, but the restaurant incident sticks with me.  These were people that went out of their way to mock Tyler in a public setting.  Worse yet, the father laughed and played along.  Obviously the child learned that to mock and bully someone would gain him adult approval.  What an awful example to set.

Sadly, bullying occurs every day.  Sadder still, the problem is not just limited to the children.  Adults can be seen bullying other adults on television, in the workplace, and everywhere else.  But it is the special needs children that are especially susceptible to the problem.  Our kids are not physically, mentally, or emotionally able to handle the problem, and may not have the ability to properly relay the problem to authority figures.  It may truly lead to situations where they have no defense at all.

Melania Trump has a public platform against bullying called "be best".  This is meant to denounce bullying of any kind, including cyberbullying.  Its a noble cause, as we know that bullying has lead to suicides as early as the age of 10.  Cyberbullying is particularly destructive because it can be so easily spread and so difficult to control.  I really do commend her for her efforts.

Unfortunately, she has become the very symbol of why bullying is so dangerous.  She, with the national platform, has made it a matter of convenience.  With her husband beside her launching twitter rants, often containing unfounded accusations, name-calling, and veiled threats, she goes silent.  She literally became the enabler for the very cause she made as her national platform.  The message it sends is loud and clear...fight bullying unless it is happening too close to home.  Worse than all of that, is the meager attempt at defending his actions by saying that the people essentially "asked for it" by being in the public eye.  Its beyond my knowledge of words to describe how crushingly bad that is to the real fight against bullying.

If you think I am reserving this for Melania Trump only, I'm not.  One would only have to watch 2 minutes of any "news channel" to find people trying to scream over the opinions of other people.  You could also watch the debates going on in Congress to see all the name-calling and half-truthing that you could possible stand.  Its everywhere.

BUT....the solution has to start SOMEWHERE.  And that somewhere has to involve the people at the top being held accountable for their own bullying behavior.  They cannot get a free pass.  We can't say that bullying under any circumstances is wrong, and then turn around and accept it from the person that is supposed to be leader of the free world.  When you do that, you might as well shut down the "be best" campaign, and keep a box of sticks at the doorway of every school for the bullies to use.  

Melania chose to make anti-bullying her mission.  Awesome.  She has been given her test in a big and difficult way, and she fell spectacularly on her face.  Not so awesome.  By failing her own cause, it is not some cute thing that can be debated on the news programs, it is a failure that genuinely hurts every child and special needs person who could be bullied in the future.  She just said it was "ok".  And that my friends, is the saddest truth of all.

Be well and God bless.  Tom

Monday, December 16, 2019

Tyler and the Christmas Season

He doesn't care about Christmas.  The end.

Perhaps it's not QUITE that simple, but this really does sum it up for him.  Christmas was a time that of course we all wanted to gear up for gatherings, presents, and the cheerfulness of the season.  For Tyler, much of it was quite the opposite.

What we saw as a cute photo opportunity with Santa, he saw as some stranger in a red suit making him sit on his lap.  What we saw as cool new toys wrapped in wrapping paper, he saw as distractions keeping him from his old toys that he wanted to play with.  What we saw as visiting and gatherings, he saw as overstimulating crowds.  

I always try to put myself in his place by thinking...what if I crash landed on a deserted island, didn't know the language, understand the customs, or knew what was going to happen to me next?  This is how he lives his entire life.  Christmas is not something he understands the way we do.  

When he was very small, we had an easier time getting through the holidays.  Tyler liked to go along with whatever we were doing.  But as he got older, things changed.  We would buy toys for Tyler that we thought he would enjoy, or that we thought would help him learn new skills.  Many of these toys would sit, untouched, in a corner of his play area, or in a closet.  As he became a teenager, opening gifts would actually make him angry, so we would have to spread the gifts out over a number of days, or wind up opening them ourselves.  As often happens with customs and abstract things that he could not understand, we struggled to let them go.  What kind of parents were we if we didn't buy our child lots of presents?  What kind of parents were we if we didn't give him the joy of Santa and Holiday parties?  

For Tyler, and all individuals with special needs, its about giving them what they truly want and need that is important.  Some may be excited with the lights and the joy surrounding Christmas, while others may need it to be more intimate and quiet.  We now get Tyler a gift basket full of treats and sweets that we know he likes.  We also take Tyler out for his favorite Mexican dinner and spend some time with him.  We also get him a few gift cards to eat his favorite foods throughout the year.  We might get him some new clothes if he needs them (which he rarely does).  In total we might get him one or two gifts to open.  It feels sad to even type that statement, as he deserves as many gifts as we could possibly bestow upon him, but when he gets angry at opening presents, who am I to argue?  That's the unfortunate irony, he deserves so many gifts, but he doesn't want them.  Not material gifts anyway.  

I do remember one fond memory at Christmas that I will always hold onto.  We were living at a former house, and Tyler was about 10 or so.  We had discovered that he loved ball pits at the local play land places.  We found a blow-up version that would hold hundreds of these plastic balls.  We set it up on Christmas eve, and grabbed the camera Christmas morning.  He came down the steps and looked around the corner.  You could see him take a second to process what he was seeing, then he ran full speed, jumping straight into the pit.  By the sounds he was making, we could tell that he was thrilled to have it.  Eventually the actually pit would deflate so often that it became a major pain, so we dumped hundreds of balls into a kiddie pool, and kept this in his room.  For months we would hear him launching himself into the pool early in the morning, or catch him sleeping in the pit overnight.  It was one of those lightening strike types of things that we would always work hard to find.  

If you are a special needs caregiver, and you struggle during the Holidays, you are far from alone.  After all, we have the things that we picture as being the way a Holiday is made.  We also have the world around us advertising how we should celebrate.  Then we have the special needs way of doing things, which often physically and emotionally conflict with everything else.  It can actually make the Holidays more stressful and even isolating.  We want to be able to tell stories about our children passing out from excitement at that one really cool gift, but often the experience is quite different.  It's ok...thats the world we live in.

Its important for us to remember, that caring for our loved one is the most important thing.  Our greatest gifts to them, and to each other, is to provide a strong spiritual foundation, a loving environment, safety, and security.  Everything else is just red suits and flashing lights.

Have a very Merry Christmas and Happy Holiday season!   Tom

Saturday, December 14, 2019

An Empath

5 years ago I sought the help of a threrapist.  I knew that Tyler would be leaving us soon and I wasn't sure how I would handle such a difficult adjustment.  I didn't want to go through it without an allie who could help me look at things objectively.

One of the very first things I described to him was this inexplicable feeling I had that I could feel things that were going on around me. It made me feel a little crazy in a way.  I wasn't trying to suggest that that I had some super power, but that I had some sensitivity that made me feel things within other people.  Like I could instantly tune in to a persons wavelength like most people tune into a radio station.

A week after starting therapy, Robin Williams committed suicide.  We discussed this in therapy and my doctor confided that many of his patients were hit hard by this but he wasn't sure why exactly.  Deep down I did know why.  I just didn't understand what it was I knew.  I could sense that under the comedian fecade that he felt immense pain for people around him.

There is term called an Empath.  Many wonderful people have the ability to understand what another person feels.  A person with empathy can look at a situation and put themselves in the other persons shoes.  An Empath is a person that automatically feels the emotions of others, without making a conscious effort.  In other words, an Empath reads emotions and places themselves in the minds of other people without intentionally doing so.  This was exactly what I was describing to my therapist.  I was an Empath.

It's very hard to be an Empath.  Those who are not empathetic frustrate us.  We struggle to understand why there is so much pain around us.  We struggle with people who seem unsympathetic to the needs around them.  The hate drains us like a negative life force.

If you have tremendous empathy, or you are so sensitive that you are an Empath, you should view this with a sense of pride.  Withou empathy, we cannot hope to help others.  It's only by putting ourselves in someone else's shoes that we can find compassion.

Be well and God bless.  Tom

Friday, December 13, 2019

Greta Thunberg

All of us who live life in the autism spectrum hope that our children can find purpose in their lives.  We hope that they can find the means to contribute to the world.  We hope that they can be treated with respect, and love, and humility.  And if we are truly lucky, we will see them touch humanity in their own special way.

Tyler has found ways to touch people's lives.  As I've written about over the last few years, he had a profoundly positive effect on some of his "basketball buddies" at school.  So much so, that one young man gave Tyler his team practice jersey to show his appreciation.  Tyler also touches lives through this blog.  His story and inspiration (for which I simply interpret and put into words) have reached tens of thousands of people around the world.  His Bibles have touched the souls of his congregation and beyond.  He has made a positive mark on the world.

Greta made a decision, her own decision, a few years ago to speak out for the wellbeing of our planet.  In this journey, she has met with Popes and dignitaries.  She has spoken at the UN, begging for people to take this seriously.  She believes (as do I) that the situation is becoming more dire every day.  While most of us try to do a small part, like recycling or buying things we believe to be more environmentally green, she has taken it to the world stage.  

Let's not lose focus on this point, Greta has Asperger's Syndrome, which makes the world stage all the more difficult for her.  Yet despite the natural inclinations for her to avoid the very things that she is doing, she speaks directly to the heart of the matter.  She does so without regard for fame, fortune, or even criticism.  Yet criticism does come from those who don't believe in her message.  Because her message threatens their personal agenda, she comes under fire in personal attacks.  

The Brazilian President labeled her as a "brat".  Our own immature leader tried to look down on her saying that she needed to "chill" and that she had "anger management issues".

If we unpack those statements, its easy to see the complete lack of respect and humility that they represent.  Here we have a 16-year-old on the autism spectrum who is fighting for a cause that she believes in.  Whether or not someone believes in the same cause or not is irrelevant.  We should applaud her (as TIme magazine did) for her conviction and bravery.  Rarely have we seen a neurotypical teenager take a leadership role in the world, much less a young lady on the spectrum.  Instead, she faces the ignorance of those who have no other agenda than to spread hate and evil.

As I have said many times before, despite attempts to call my views "too political", WORDS DO MATTER.  And those words have profound effects on the special needs world.  Greta represents an amazing opportunity to encourage and honor the efforts of a young lady on the spectrum.  And while many people are thankfully doing that, still others think their personal attacks are appropriate.  They are not.  They are disgusting.  But worse yet, they are meant to demean the efforts and accomplishments of someone who was not born with the privileges of a typical processing system.  The comments by our supposed leader and others are steeped in jealousy and ignorance, and they should be denounced.  

Would someone say that Tyler is just a "puppet" because he gives out Bibles to those who need them?  Do I need to "chill" because I choose to take this message and others to the world stage?  

Lets give this young lady the respect and honor owed to her.  She is a young woman on the spectrum trying to make an impact on the world.  A world, which nearly all scientists agree, need people just like her to fight for.

Be well and God bless.    Tom

Wednesday, December 11, 2019

Time Person of the Year

No.  I was not selected as Time's Person of the Year.  The good news is that I received as many votes for that as I did "Sexiest Man of the Year".  So I have that going for me.

Time's Person of the Year is Greta Thunberg.  For those of you who do not know much about Greta, she is a 16-year-old girl with Asperger's.  At 11-years-old, a video in school nearly broke her heart.  She came to realize that the planet was in peril, and that our ecosystems are suffering a horrible fate right under our noses.  

Greta, like so many others on the spectrum, processes information differently that the majority of people.  She sees things as much more black and white, without the distraction of bells and whistles.  She is unyielding in her conviction that climate change is real and it is rapidly destroying the very world we live in.  Everything else going on around her is just noise.  She doesn't care about fame, small talk, or insults.  

Unfortunately, something that is lost in the high argument of climate change, is the fact that this is a young girl with Asperger's.  Her disability tells her to shy away from people and to avoid interactions.  Yet she is driven to galvanize people.  She overcomes her own anxieties and fears to speak to a subject so much larger than her.  This alone makes her an amazing young lady.

She proves that there is an incredible message inside of everyone, regardless of what they are going through.  And that its very possible for that message to change the world.

Be well and God bless.     Tom 

Monday, December 9, 2019


Forgiveness is a complicated thing.  Whether we are searching for ways to forgive someone else or forgive ourselves, there are many emotions that get in the way.

A member of our church spoke yesterday about Tony Showers, Jr. who is awaiting sentencing for the hit-and-run death of a 4-year-old girl.  This church member is mentoring Tony as part of (as I understand it) a veteran helping another troubled veteran program.  The mentor has also given one of Tyler's Bibles to Tony so that it may help him find God and make sense of all that has happened.  Tony's contact information has been posted at the church so that we can send offers of prayer to him as he comes to grip with what is ahead of him.  My first thought was to sit and write to Tony, to introduce myself as Tyler's dad and explain to him how he came to have that study Bible.  Perhaps Tyler's inspiration can work in this young man's life.

Then I thought of the family of the young girl.  We prayed for them during the service as well, but I was troubled thinking about the hell they must go through every day.  This is where those complicated thoughts hit me; how do we begin to forgive someone who chose to take drugs, hit an innocent little girl, and then leave her dead along the road.  It took 2 years to bring an arrest in the case, and another year to prosecute it.  It appears he not only did a terrible thing, but he refused to take responsibility for it.  How can we forgive that?

My great Uncle Art was murdered in 1975.  He walked into a store, which was being robbed at the time, and was shot dead while looking at celery.  He didn't realize a robbery was happening, and the young robber blew him away.  It left a gigantic hole in the lives of everyone who knew him, and was devastating to the family.  Lives were torn apart.  42 years later he was released as part of a juvenile offender program.  Essentially, because he was so young when he was convicted of the crime, he was entitled to be re-sentenced in 2016.  It was deemed that after 42 years, he deserved to be released and live the rest of his life (in poor health there was not much left to live) outside of prison.

Obviously and understandably there were members of the family that were conflicted and sad by the news that the murderer would be released from prison.  It invoked conversations of the justice system in general, and of that word "forgiveness".  I was saddened to see that one took it so far as to publicly wish him to "rot in hell".  It made me wonder what they thought Christianity and forgiveness really meant?  Does it mean you should preach forgiveness all day long, but if it happens in your own family you have a free pass to hate and deny forgiveness?  The perpetrator has shown in his actions and words since 1975 that he regrets doing such a horrible thing, and that he understands the hurt he caused the family.  He served 42 years of his life, essentially meaning his actions cost him his own life as well.  To say that a regretful man, regardless of the ugliness of his actions, deserves to "rot in hell" is to deny God and what he teaches us.  

How do we apply this to Tony Showers, Jr.?  He did drugs, ran over a young child, and refused to take accountability for it.  He tore people apart.  I think we start by having him take ownership for his actions.  He needs to acknowledge the pain he has caused and be willing to ask forgiveness for it.  If he is willing to be truly remorseful, we must forgive him. Regardless of how difficult it may be, we must be willing to forgive.  We cannot simply fall back on the hollow words that seem so popular in such situations "I forgive but I won't forget".  That, by the way, is code for "I don't really forgive, I just call it something else so it sounds better".  If we can't do this, then we too are truly lost.

I suppose my letter to Tony will be to introduce him to Tyler's story, and how I hope he uses that Bible to find what he needs to become a person worthy of the forgiveness that he needs.

Be well and God bless.    Tom

Friday, December 6, 2019

300th Post

This post today marks the 300th entry into the blog.  With over 61,000 views, it's humbling to think about how many people have viewed these pages from all over the world.  

My Dad went into the hospital yesterday to have a heart procedure done.  While it was a relatively "routine" procedure, it feels lesser so as he becomes older.  Both of my parents are past 75 and heading toward 80.  Luckily they are both able to get around well and do not currently need extra support.  But you can now feel those independent days coming to an end.  So many of my friends and coworkers seem to be entering into the same territory, which makes me feel as though I'm passing into a different stage of my life.

I can't imaging what its like to be the one being taken care of, since I have been so heavily engaged in caregiving for so long.  Seeing my Dad last night and today gave me a glimpse however.  And it made me remember one very important thing:

We cannot ever discount a person's right to their dignity and their right to make their own choices.

In Tyler's case, it could be easy to forget that he is a man.  I have to believe, that no matter how pervasive his disabilities are, that he holds his own dignity in high importance.  He likely doesn't perceive it in the same way that most of us do, but he deserves that dignity all the same.  

My Dad takes his independence and pride very seriously.  He comes from a generation that relied on being strong and self-reliant, so he doesn't accept help easily.  He would sooner take twice as long to do something, than to have me help him do it.  It isn't that he doesn't like doing things with me, he just likes to do things on his own terms.  While this can be frustrating and at times nonsensical, I have to respect that it's important to him.  Its his way of maintaining control, even as the control begins to slip away.  He was always the one that stepped up and made decisions in times of crisis.  He was always the one to talk with doctors and make sense of situations for the elder generations.  Now, those generations are gone, and he is becoming the one getting closer to that role.  His son is now becoming more involved in his plans for the future.

Whether we are doing things and making decisions for Dad, or Tyler, or each other, we have to keep those rights at the forefront of our minds.  They are valued and irreplaceable parts of our lives who have traveled a long road to get to this point.  They deserve to be treated with care, respect, and humility.  They are not simply a name on a hospital registry, or a part of a government program.  They are first and foremost children of God, and sons, and fathers, and brothers, and friends.  

Be well and God bless.    Tom

Tuesday, December 3, 2019

The Good Doctor

On Monday night I happened upon the television show "The Good Doctor".  Since the story centers around an autism savant as a surgical resident, I'm surprised I hadn't taken the time to watch it before.

A disclaimer before I go on....the lead character of Shaun Murphy is a much different person than what I have experienced Tyler to be.  I am not familiar with savants, and I have no way to judge the accuracy of the portrayal.  I can merely offer my gut feeling on the show..

The show that I watched was extremely well acted.  Freddie Highmore is obviously very interested in bringing dignity and realism to the role.  The acting around him is also very good.  I am a particular fan of Richard Schiff, who captures the essence of what it is like to communicate with someone who deals with life on a completely different plain.

The episode I watched dealt with Shaun and his dying father.  Admittedly, there were areas where I doubted the characters ability to process such complex feelings in order to make some of the decisions that he did.  We seemed to go from Shaun being unable to break from his set behaviors, to an ability to compromise, and back again.  But there were just as many times that I found myself recognizing his behaviors, and finding Tyler in them.  One in particular was Shaun as a boy unable to cross a stream, and his father essentially faced with forcing him over to the other side in order for life to continue on.  It was a very real moment for me.  Many times in Tyler's life we have had to swallow a difficult pill and do something we knew he wouldn't like for the sake of life continuing in a forward direction.  Another such instance was Shaun's inability to deal with some overwhelming emotions and becoming physically injurious to himself.

We have to keep in mind that the show has to tell a story, and it has to have a flow.  The writers have to be given a certain amount of latitude to allow the character to act and react in some unnatural ways to make this happen.  A one hour show about an autistic man rocking and playing Mozart on the piano would be compelling for a short time, but ultimately wouldn't be something to tune into every week.  I think the Good Doctor tries to strike a balance between realism and storytelling that wouldn't always go well together.

As for the concept itself, like with my feelings about Rainman, I have no problem.  These stories are bringing autism to the forefront of the viewers minds.  As long as they are not wildly inaccurate or remotely disrespectful, I think they are fine.  We are still very much in the early stages of really understanding the real life drama behind such characters, so any interest shown towards it is a good thing.

I'd be interested to know if any of you follow the program and have any feelings on the subject.

Be well and God bless.    Tom

Tuesday, November 26, 2019

When Ignorance Comes Calling

We all know them....the people that walk around cursing about our world that is supposedly filled with young people who are "too sensitive" or have it "too easy".  Their sentences typically start with the words "back in my day" before they tell you how men were men and women knew their place in the kitchen.

They forget one simple thing...they are the generation that raised this one.  Point thy finger at thyself if you don't like what you see.

I do agree that political correctness has its proper time and context.  I don't believe we should intentionally seek to offend anyone, but I also believe that historical context is important.  As with the case of the confederate flag, I don't think people should be banned from flying one if they choose to, but I also don't believe it should fly over government buildings.  I feel the same way about religious symbols, people should have every right to display symbols at their home, but public venues should not do so (especially government buildings).

I bring this up because yesterday I happened upon a conversation at work, and during the chit-chat "Mark" mentioned that his wife works as a teachers aide.  He continued on (as unfortunately so many are apt to do) that she deals with classrooms that contain kids with emotional and behavioral needs.  As he continued on (of course) he lamented that one child in particular has a full time aid with him, and yet there are still outbursts.  The last part was the peach of them all:

"When this kid is being bad, everyone has to get up and quietly leave the room.  I think they should all be told to turn their head so the teacher can give them a good smack in the head".

And there you have it.  I won't go into the layers of wrongness that this statement represents.  Ok, yes I will.

First of all, and this one is REALLY IMPORTANT, why do people with this attitude believe that everyone wants to hear this?  Is there no filter which says, maybe I could say something really offensive to someone so I shouldn't be blasting my mouth.  Secondly, the use of the word "bad" is offensive in and of itself.  Our kids are not special needs, emotionally crippled, or behaviorally inappropriate because they want to be.  These kids are imbalanced, or abused, or in some other way scarred and in need of our help.  Third, suggesting that violence toward anyone is appropriate, especially someone with special needs, is ignorant and disgusting.  

In that moment, I wasn't sure what I wanted to do with Mark.  In a younger day I might have become irate and made a real stink of it.  As I've gotten older I've come to realize that my anger would not have changed his warped thinking even a little.  I decided at that very moment I would simply walk away.  There is a level of tone deafness and ignorance that even I can't penetrate.

I happened upon the other member of the conversation this morning and mentioned by disgust toward the comments Mark made.  Turns out his daughter works for a local residential facility for disabled individuals.  We discussed at length our experiences and family dynamics. 

Perhaps at some point in the near future I will take Mark to the side and have a conversation with him.  I may simply explain that he can never be sure of the personal beliefs and circumstances of those he is venting to.  I may tell him that for parents like me, its hurtful to hear someone suggest hitting an already needy child.  Even if the comments are made in jest or with a degree of sarcasm and hyperbole, they aren't appropriate and they shouldn't be said.  I know Mark well enough by now that he wasn't intentionally trying to hurt anyone's feelings, but it doesn't excuse being reckless with your words and taking the chance.

Ignorance is all around us.  Even if we have to be called "sensitive" or "snowflakes", its up to all of us to point out when someone has crossed the line of decency.  We have to do it because people like Tyler cannot do it for themselves.

Be well and God bless.


Friday, November 1, 2019

Tyler, You are Missed

We had an appointment this week with Tyler's psychiatrist to continue working on making his life better through medication and other changes.  It does seem that since lowering one of his meds, he has become a little more awake and aware, which also seems to make him a little more interactive.  His aggression has also stabilized, so maybe instead of "being in the weeds", we are simply in the rough.

Sitting in the office with Tyler and other staff, I could see Tyler wanting my attention.  This is the first time in a while I had seen him seek me out like that, so I moved close to him and gave him all the attention he wanted.

It hit me very strongly afterward just how much I miss him.  I'm not talking about in the sense that I miss the everyday interactions with him (which I do miss also), but I miss him in the sense that I imagine people with parents with Alzheimer miss them.   I miss the expressive and joyful Tyler.  I miss the Tyler that would have insisted I hold my attention to him and him alone, and the rest of the room would have had to taken a back seat.  I miss goofing off with him so much that I would get the giggles right along with him so much that I would need to apologize to those trying to talk with us. 

There may be nothing more frustrating for a caregiver that to watch a person fade away.  Sometimes that person can seem so close to the surface, and yet you can't reach them.  I want for everyone to enjoy that Tyler that I knew, and I want Tyler to enjoy being goofy and expressive, but it continues to elude us.

I don't know whether Tyler is simply hidden behind his medications, hidden behind depression, or if his brain has been so battered and bruised, that he has become lost forever.  Considering that he has been under the influence of countless medications for a quarter century, its hard to believe that his mind wouldn't have significant residual effects of this.  Surgeries have invaded his brain, and seizures have short-circuited it. 

Perhaps the worst part is the not knowing.  I want to believe that we can find the right combination of medication and circumstance that he finds that strong and cheerful persona he had so many years ago.  But it is just that...many years ago.  The regression has been like an army marching slowly toward an unknown destination.  It doesn't stop, it doesn't yield, it just consumes mile after mile. 

I told him yesterday that I missed him.  He signed "I love you" to me.  Its enough to make me continue digging in to find him, no matter where he has gone.

Be well and God bless.    Tom

Friday, October 4, 2019

The Art of Compassion

This week it was my pleasure to host a CPR class for our company's emergency response team.  This team is comprised of employees from various departments.  We do not pay them an extra salary, nor do we force anyone to become responders.  We simply open the training up to those people who want to help their fellow man in a time of need.

The response that I receive is one part inspiring, and one part depressing.  On one hand, there are the 10% of the employee population that eagerly raises their hands.  They know that they could be faced with a situation of dire and critical need, such as a severe injury or a heart attack.  Yet they have an inner compassion to protect human life.  I'm very proud of that 10%.

The saddest part is the 90% of those who are not interested in helping their fellow man in the time of crisis.  Perhaps I'm judging these folks too harshly, but many of the reasons behind their reluctance is simply a shield for apathy.  I had folks tell me that they cannot deal with "blood and guts" very well.  Who among us does??  I explain that being an emergency response person can also mean helping to obtain supplies, call 9-1-1, direct ambulances, crowd control, and other non "blood and guts" activities.  They still won't be bothered and I certainly can't force them.

My guess is that this 10%-90% ration is pretty indicative of many other things.  For instance, its common knowledge that 90% of volunteer work done for a church is performed by 10% of the congregation.  Imagine if those numbers were made to be an even 50% split what a difference would be made in our world in general.  

I believe we have come to accept that compassion is the exception instead of the rule.  We need to ask ourselves why this has happened.  Is it because society has decided that it is "too busy" to worry about the problems of others?  Is it because we have watched "leaders" who have shown themselves to openly insult, degrade, and demean others that we have accepted this as the norm?  And how much of this apathy has been adopted by our children, thus further watering compassion down for the next generation?

I'm always shocked when I'm in a class where the question is asked "how many of you are organ donors?", and only half or less of the hands go up.  It's a personal choice...yes.  But I cannot, for the life of me, think of a valid reason not to do it.  To me, this should be an absolute no-brainer.  If I die suddenly I want for others to benefit from my organs.  If I can help a blind person see, a burn victim with new skin, give an organ to someone desperately needing one, or veins for a person needing them, sign me up!  I've actually heard people say "I don't want to have someone butcher me up after I'm dead".  You're D-E-A-D...vanity should really stop there.

Raising my children has taught me many lessons in compassion.  For Tyler, we had to learn to see the world through his eyes and understand his fears and anxieties.  Even when he was being aggressive, we had to have compassion for what caused these behaviors within him.  Compassion was also a key element in how we judged the performance of a physician or medical provider.  We expected compassion from schools, buses, nurses, and anyone else who worked with Tyler.  We considered this the most minimum skill that they had to possess.

Sam is a different story.  She is a very compassionate person who has her feelings hurt when others do not treat her in kind.  Even as a smaller child, I would see her act in kind ways toward others.  I remember when she was about 5 we were at a zoo where you could feed some animals.  While other kids were jockeying to get to the best spot, Sam spotted a little girl without feed.  She asked if she could give the little girl some of hers.  I'd like to believe this was all from things I have taught her, but I know much of it is just naturally in her heart.

Lets try to remember, today and every day, that compassion is the door that opens up so many other things.  When we show compassion first, so much other great things will follow.  But unless we can grow that 10%, I think we will continue to struggle as a society.

Be well and God bless.     Tom

Friday, September 27, 2019

Tragedy in Florida

I just saw a story on social media about an 87-year-old grandmother who murdered her disabled grandson.  She was afraid of what would happen to him once she was no longer able to provide care for him.

It would be easy to pass judgement and say "how could someone do that to their own grandson?", but there is a lot to consider here.  Think about the incredible amount of failure that has to lead up to an event like this one.

The disabled man did not have parents who could care for him.  His father had died and his mother was estranged from him.  He lived at a group home during the week and was cared for on the weekends by his grandmother.  

The system must also share some responsibility.  We continually hear about the elimination of benefits for disabled adults.  We also pay caregivers a pitiful salary to care for people who need the most support.  This leads to high rates of turnover and substandard care.  The substandard care easily lends itself to turn into neglect and abuse.

Science shares a slice of the blame pie.  As I've stated in other posts, we have become adept at keeping people breathing, but have fallen woefully short matching that with tools for better quality of life.  

Perhaps grandma knows of instances of institutional abuse, or perhaps the history of the family is so sordid that he would suffer at their hands.  Whatever the case, elements around her caused her to believe that he would be better off in the arms of God than here on earth.  It isn't her choice to make, and I do not support her decision, but I can't condemn her.

If I were old and about to leave this earth, and someone showed me a crystal ball of Tyler being abused and neglected after I was gone, I'd have to think long and hard before leaving him that way.  I'm not sure that most special needs parents wouldn't feel the same way.

Its also heartbreaking to think of how the judicial system will have to decipher this.  She committed murder, and that cannot be ignored.  Hopefully she can be confined to a hospital for her remaining days as opposed to a jail cell.  Maybe the strain of caring for him became too much and she has a medically explainable loss of reasoning.  

It is heartbreaking, but also largely preventable.  To do that we must be willing to look at these failures and be willing to offer more avenues of care for disabled adults.  Within this I also make the same appeal for disabled veterans.  We have to listen very hard to this woman and understand her fears before we can understand the mind of the aging caregiver.  I'm just not sure we have the empathy it takes to do this anymore.

Be well and God bless.   Tom  

Friday, September 20, 2019

The Return of Matty

A few weeks ago I wrote about a terrific young man named Matty.  I hadn't had the pleasure of running into him for a couple of weeks.  Lunchtime is a lot better when cross paths with him.  His attitude and open heart in infectious.

I needed to fill up the gas tank today so I stopped into the local food and gas mart.  As I stood in the checkout line, in walked Matty and his caregiver.  It only took a minute for him to have me laughing.  "Hey this guy is following me around" he said as I shook his hand.  He said they were going to eat there because "I gotta give McDonalds a break!"  He said his goodbyes and bounced on to the next thing.

The cashier commented what a pleasant young man Matty is.  I agreed and said he was one of the most special people in this world.  After all, he has a positive nature that isn't fake or done for show.  He displays a simplistic and natural regard for others, which is a rare and special quality.  

I shared the blog address with his caregiver.  She seemed a little puzzled at first but I think once she sees the blog she will remember that Matty and Tyler have things in common.  I told her that there was an entry about my meeting Matty and being so inspired by him.  He smiled and thanked me again.

Its me that owes thanks to him....for being such a rare and special person that can change the trajectory of my day with a simple laugh together.

Be well and God bless.   Tom

Thursday, September 19, 2019

Sam Update

A quick update on my post from yesterday.  Unfortunately, Sam was not elected to student Senate.  As it turned out, she was among eight students who were running.  The good news is, she was seemingly ok when I arrived home.  She said she was disappointed, and she blamed me for writing a bad speech, but that she was fine.

We told her how proud we were of her for trying and being willing to pursue something she believed in.  We will take her out for pizza tonight to her favorite restaurant in the world to celebrate.  Maybe she didn't win for student Senate, but she is a winner in our hearts every time she does the right thing.

Be well and God bless.   Tom

Wednesday, September 18, 2019

Thinking of Sam Today

You have seen my daughter, Sam, express her thoughts here on the blog.  Well, today I am thinking about her as she attempts a new endeavor.  

Sam came home last week and asked if she could run for student Senate at school.  She was very excited as she explained that she feels like she is a good leader and would be good at voicing the needs of her class.  Her idea was to represent things that everyone could enjoy, regardless of social stature.  She wants a beautiful and all-inclusive school for everyone.  We encouraged her to run and to win!  I asked her what she wanted her speech to say, and helped her put the words together.

Last night came around and she had an emotional meltdown right before bed.  She was afraid she was going to be the one person that wouldn't get elected.  She was afraid that she wouldn't get any votes because she isn't one of the most popular girls.  She was afraid of looking like a fool with nobody raising their hand for her.

I told her how I had been there many times.  In fact, she is braver than I am because I wouldn't have had the guts to run for anything back during my school days.  With years of experience I have come to realize that its more about what I believe in myself than what the masses believe.  But I'm 49, not 10 and trying to find my way.  It occurred to me that the advice I was giving her is true for so many things.  Some of us face tremendous challenges where fear has a grip on us, some of us are caring for loved ones who are facing those challenges and fears, and some of us are trying to navigate even these types of small disasters.  I said...

You know in your heart that you will be great.  You know you want it for the right reasons.  You go in there with your chin up.  Stand there and give the best speech we've got and do it with your chin up.  When the votes are counted, you keep your chin up, win or lose.  If you win, be gracious to those who didn't.  If you lose, be gracious to those who did, and keep your chin up.  Its ok to be disappointed in the result, but don't be disappointed that you were brave enough to try.  Only 3 students in the class dared to try, and that alone makes them all winners.

Of course I'm hoping that when I get home she is walking on clouds.  It would be a great lesson to never sell herself short and to strive for goals that even she isn't sure she can reach.  I'm obviously not wanting to go home to a pile of sobbing 10-year-old.  That lesson will have to be to never give up, especially when you believe you can make a difference.

Either way, my heart goes out to her because I am so proud that she is the kind of person deep down that wants to stand up and be heard, especially for people that can't do it for themselves.  In many ways, its a path of incredible satisfaction and disappointment.  Let's see which one I'm going home to today...

Ahhh....the joys of being a Dad!

Be well and God bless.   Tom

Tuesday, September 17, 2019

Finding Dr. Kofinas

Robin and I had one of those moments.  We were talking about a random Tyler memory and we said those famous words "I wonder what ever became of that person?"  In this case we were referring to Dr. Alexander Kofinas.  

It was 1991, and we had just found out that Robin was type-1 diabetic AND pregnant.  We were made to understand immediately that this was an unfortunate combination and that her sugars had to be controlled as quickly as possible.

I do not say this lightly....Robin did an amazing job getting her sugars under control right away and keeping them in check throughout the pregnancy.  I can't imagine getting a diagnosis one day, going straight into the hospital shortly after, and training myself to live a whole different way of life overnight.  She learned how to eat, how to give herself insulin, and how to test her sugars.  She did this for her baby, and she did it without complaint.  Tyler owes his life to her, and she should be regarded as a hero.

We were referred to Dr. Kofinas as a high-risk pregnancy.  We had no idea what to expect, and being so young we were scared.  Thankfully, Dr. Kofinas was the perfect doctor to go to.  He talked to us as though Tyler were his only patient.  He explained everything to us so we would know where we stood.  He cared.  The caring was what we needed the most.  

Once we were referred out-of-state for Tyler's birth and initial surgery, we lost track of Dr. Kofinas.  I suppose this happens a lot with these situations.  We did think about him and talk about him occasionally when something relative to her pregnancy would come up in conversation, and it always ended in "I wonder where he ended up".

I took a moment and decided to google his name.  I couldn't remember his first name, and honestly wasn't sure how to spell the last name either.  After just a few failed attempts I found a Dr. Kofinas in Brooklyn, NY.  Luckily his website actually posted his resume, and sure enough, there was our hospital in the early 1990's.  It appears he has a practice with 2 locations in New York.  And either he has a picture on his website from when he was 40, or he looks damn good for his age!  

I took a moment and sent him an e-mail starting with..."you won't remember us...but" just so we could say hello.  Even if he doesn't remember anything about us, it felt great to let him know that he made a difference in our lives when we really needed it.  He was patient, compassionate, and supportive.

Many times on this blog, I talk about the importance of placing your trust in good people who are willing to stand beside you through the difficult times.  There has been nothing else more valuable in our journey than having people around us who have loved and supported us.  We didn't realize it then, but Dr. Kofinas was an early lesson in putting ourselves in the right hands.

Hopefully I get a reply from the good doctor and I can thank him for what he did for us all those years ago.  Its important that we remember to do this where its warranted.  After all, these doctors are as human as we are.  They experience disappointments and heartbreak when they lose patients or can't help the way they would like to.  Perhaps being reminded how much he helped us will strengthen him to continue to do the same for others.

So today we salute Dr. of Tyler's heroes.

Be well and God bless.   Tom

Wednesday, September 4, 2019

Tyler Update...Sort of

It appears that Tyler has come out of the weeds somewhat within the last 2 weeks.  I would say we have gone from the fescue to the light rough at the moment.  I will be receiving a more detailed update tonight, which I will post later.  At church he still appeared to be unfocused but smiling and a little interactive.  

The current frustration is trying to figure out WHY this has happened to him.  That question alone is difficult enough, but an equally frustrating hurdle seems to be getting the right people to help him in the first place.

Something I heard from the beginning has turned out to be so true...the treatment options become much more limited the older that Tyler gets.  The ironic thing about "aging out" of certain services, is that mentally Tyler hasn't aged at all.  Even physically Tyler is nothing near a 27-year-old.  And yet this is the criteria which often determines treatment.  Just this year alone he has lost his Neurologist of 20 years because he is now an adult, he was denied an appointment with a psychiatric group because he was too old, he lost my insurance because he turned 27, and we are struggling to have a consultation with an out-of-state doctor because he lost my insurance at age 27 and only now has state funded medicaid.  

Don't get me wrong, the folks I am talking to are normally WANTING to be helpful, but they entire system is just so broken.  Facilities have to worry about getting re-reimbursed, whether they are doing something that would be frowned upon by insurances or medicaid, liability, limited numbers of doctors, and limited slots to schedule patients.  Most of these mental health facilities are also unable to take new patients, or are scheduling months and months in advance.  

The need for services is far exceeding the supply of resources.  This is scary because both factors are going the wrong direction.  The need is growing and the resources, which are already stressed to the point of breaking, are simply being stretched more.

Its easy to throw our hands up and say that the system is broken.  Obviously this is true.  But breaking it into little pieces and fixing them one at a time is how we can make some progress.  There are too many pieces to lump it together and call it "the system".  I will name just a few broken pieces:

  • Not enough pay or training for caregivers
  • Lack of state and federal funding
  • Lack of facilities willing to address the needs of disabled adults
  • Too many people allowed to abuse the current system
  • Lack of education for those family members raising a disabled individual
There is no way on this or any other planet that we can fix all of these issues at once.  BUT, I do believe that an initiative should be set to address one at a time. 

How do you eat an elephant?           One bite at a time.

Be well and God bless.    Tom

Tuesday, September 3, 2019

When I Grow Up

We change so much as life goes on.  Something that every relative asks every child is "what do you want to be when you grow up?".  We immediately think about what profession we want to it a doctor, lawyer, soldier, or whatever.  Before we really understand what life is about we are trying to figure out our career for the next 30 years.  Its no wonder that most people I know who went to college are not actually doing what they went to college for.  A 17-year-old can barely get out of bed before 2pm but we think they will miraculously make the right career choice.

Perhaps we are asking the wrong question.  Maybe the right question is...WHO do you want to be when you grow up?  What kind of a person, friend, parent, citizen do you want to be?  Its a question we should never stop asking ourselves.  

When I was about 5 I said I wanted to be a garbage man (true story).  When I waited for the school bus in the morning a garbage truck came by and the man would wave to me and smile.  He seemed happy enough and it was really one of the few interactions I was exposed to at the time.  At about age 10 I wanted to play first base for the Phillies.  At about age 13 I wanted to be a professional bowler.  Through my twenties I tried many different things but knew there was a better fit for me out there.  In my 30's and 40's I wanted to be a Safety Manager.  At nearly 50 I find myself still wondering what the next decade will bring.

But now I have enough time behind me to look back.  The first question in my mind is not whether I would have made a great garbage man, or whether the Phillies would have won more rings had I played for them.  I don't wonder how many records I might have set on the PBA tour, and I don't even think about the safety record of those I have worked for.  

I think about the kind of dad I have been.  I hope that when everything is said and done that I have loved my children the best way I knew how.  Have I been a good friend to others?  Have I been a good spouse and been willing to become better as time marches on?  Have I left a positive impact somewhere on this earth?  Have I been a good neighbor?  And have I been true to myself?  Those are the questions that I think about now.

It doesn't matter WHAT we are, it matters WHO we are.  If we are compassionate, loyal, and loving to those around us, we have lived a good life.  

When I look at pictures of my wife and children, I wonder what they see when they look back at me.  I want for Tyler to see love, courage, and devotion.  I want Samantha to see love, laughter, and protection.  I want Robin to see love, compassion, and joy.  These are the things I want to be when I grow up.  For those are the things that truly last forever.

Be well and God bless.    Tom

Wednesday, August 28, 2019

For Matty

I often have to travel between the two locations that I work for, which are about 10 minutes apart.  Most days I try to spend 4 hours at one location, and 4 hours at the other.  Since I am typically making the transition around lunchtime, I try to take my time and clear my mind.  There are plenty of restaurants, a home improvement store, and a consignment shop that I can visit.  Admittedly, one of my favorite sinful foods on earth is McDonald's french fries.  I'm pretty sure they are fried with flakes of sunshine and rainbows because they make me so happy.  So, once every week or so, I stop in for a hamburger and fries.  This is where I met "Matty".  

The first time I met Matty, I could tell that he had an MR diagnosis.  But the first thing that really struck me was how HAPPY this young man was.  The second thing that struck me was how the employees associated with Matty.  They were happy to see him, and made him feel right at home.  Matty marched right up to me and stuck out his hand.  He introduced himself and asked for my name, which I obliged.  We told me how he was looking forward to going to an amusement park that day.  I asked him what his favorite ride was, but he couldn't answer as it seemed he couldn't process the question very well.  All he knew was he was excited.

Over the course of the last few months, I've seen Matty a few times and said my hello.  He is excited that I talk with him but I'm pretty certain he doesn't remember me much from the previous encounter.  Something that doesn't change is his sweet disposition and his open heart.  Joy flows from this young man.

Today I walked in for my fry fix, and there sat Matty with a lady I perceived to possibly be his Mom.  I sat myself right next to their table so we could share lunch together.  I shook Matty's hand and I could see him struggle to remember me.  I re-introduced myself and the lady told him that we saw each other last at Burger King where I teased him for not being at McDonalds.  This seemed to spark his memory a little.  The lady explained that she is a caregiver from a local agency and she spends time during the day with Matty.  As curious as I am about him, I know better than to ask many questions.  We have to honor the legal and ethical rights Matty has to his privacy.  Matty was thrilled to have a friend sit and talk to him.  He was pointing out different colors, and complimented me on my fancy shirt (I was wearing a hawaiian shirt).  He repeated the Burger King story back to me time and time again, and then he would laugh.  I showed Matty a picture of Tyler and he was very inquisitive.  He showed me the crew hat that the employees gave him.

I finished eating and told Matty I needed to head back to work.  We looked at my empty tray and said "are you done?".  I nodded and he stood up and said "let me take this for you".  I protested that he didn't have to take my trash for me.  The caregiver touched my arm and said "let him do that for won't talk him out of it anyway".  She was right.  Just like with Tyler, once he set his mind to it, it was over.  Matty took pride in taking care of that for me.  Matty shook my hand twice more and we promised to see each other again.  "At Burger King!"  he said.  And then he laughed and said "take care" as I headed to the door.

Such a simple experience that made such a profound effect on me.  Here is a young man, full of joy and love for others.  He can't remember the names of colors and yet he wanted to show me kindness by taking care of my tray.  His heart only wants to connect with others in the same way.  For this, he is the prime example of human decency and kindness.  I hope that my interactions with him make him feel the same way.  Any I look forward to seeing Matty again real soon.

Be well and God bless.   Tom

Monday, August 26, 2019

Lessons From Andrew Luck

Some (or many) readers of this blog may not follow American Football at all.  While this post will tell the story of one particular player, its really about much larger points.  So even if you don't follow what happens on the gridiron, hang in there, and read on!

Andrew Luck played football for Stanford University.  Besides being an extremely talented player, he was a was revered as a leader.  Putting it into context, Stanford is already chock full of extremely smart people who will become future leaders, and Andrew was a leader for them.  Luck could have entered into pro football in 2010 but chose to stay with his teammates for one more season, and to earn his degree in architecture. 

In 2011, Luck became the #1 player picked in the draft by the Indianapolis Colts.  His career would be very successful as he would lead the team to multiple playoff appearances, and set many Colts, and NFL records along the way.  The last few years he would suffer some injuries which became difficult for him.  Suddenly, in 2019 he would decide to retire.

What's unfortunate is that the news of his retirement broke while he was on the sidelines watching his Colts play in a preseason game.  He was still nursing a calf strain and was not in uniform.  The fans began to get word via the internet that he had decided earlier that day to call it quits. 

Then...the unthinkable happened.  The fans, HIS fans, booed him as he left the field.  A man who had served them so faithfully and been such an example of leadership and class was BOOED off the field.  And for what?  Maybe he was the quarterback for their fantasy football team?  Perhaps they were worried about how it would effect their Super Bowl chances?

Andrew Luck is by all accounts an amazing leader.  He was known to recommend books to his teammates because he wanted them to enjoy his passion for reading.  He turned down being #1 in the 2010 draft so he could finish his commitment to his education and his teammates.  He was known to compliment the defensive payers who would pummel him on their good play.  He married his long time girlfriend and they are expecting their first child.  And THIS is who they selfishly booed off of the field.

Andrew simply stated that he didn't feel it deep in his heart anymore.  He couldn't justify the physical demands, the injuries, and the risk of permanent disability (especially head trauma) anymore.  He wants to explore other interests in his life.  He wants to be healthy enough to enjoy his wife and new child.  One writer quipped that this makes him the typical millennial, wanting the glory without putting in the work.  That writer had never played the game, never had the accomplishments, and likely never did anything more strenuous than carry a pack of paper to his desk.

There is a bright lesson to be taken from this story, and a dark one.  The dark lesson is that all those supporters immediately turned their back on his because they could only think about their own narrative.  As long as he was winning games and willing to donate his pound of flesh, they loved him.  But the minute he made a decision for himself, those pats on the back turned to stabs.  Now they sit around and cry foul about what horrors he has suddenly brought to them.  As though the Indianapolis Colts somehow holds the fate of the free world in its hands.

The bright lesson is that Andrew Luck had the courage to be the master of his own destiny.  He knew that many people depended on him on the field, and yet he chose to follow his heart and do what was right for him and his young family.  Make no mistake about it, he left fame and fortune behind and was willing to leave tens-of-millions-of-dollars on the table while doing it.  But as he probably did in all of those math classes he aced at Stanford, he weighed all sides of the equation.  He calculated each factor, and he knew what he needed.

My friends, our decisions will always be up for debate by others who do not live our lives.  Perhaps the majority of those around us have only the capacity to see what it means for their own agenda.  But when those boos stop (and they will stop), you need only to answer to your own heart.  And if you can look yourself in the mirror and know that you were led by your heart and that you did what you felt was right - you will not lose.  

Be well and God bless.    Tom

Friday, August 23, 2019

What If?

What if autistic children were sent onto this earth as angels, and those angels were sent to see how others would treat them?  What if those children were meant to someday inherit the earth and the heavens, and the rest of us would be judged by how we treated them?  What if we are protected as we protected them, respected as we respected them, and loved as we loved them? 

What if the poor were sent onto this earth as angels, and those angels were sent to see how others would treat them?  What if the poor were meant to someday inherit the earth and the heavens, and the rest of us would be judged by how we treated them?  What if we are treated with kindness and generosity as we treated them in kind?

What if pain and struggle was a gift from God, and that gift was sent to see how others would respond?  What if those in the greatest pain were meant to someday inherit the earth and the heavens, and the rest of us would be judged by how we responded?  What if we are comforted and cared for as we did for others on earth?

The angels are already here.  The gifts are already at our feet.  Those gifts have nothing to do with gold or money, but rather our capacity to love one another and care for those who need us the most.  For it will be those people who will inherit the riches forever.

Be well and God bless.  Tom

Thursday, August 22, 2019

Netflix Documentary

I will admit it....I am a sucker for a good documentary.  Netflix, I find, typically has some good ones.  What I look for are human interest stories.  Last night I watched a good one that explores the layers of mental illness through the eyes of someone suffering from severe bi-polar disorder.  It's called "God Knows I'm Here".

Without giving too much away, the true story examines the last weeks and months of it's subject Linda.  Linda has a similar story as many Americans with mental illness in that she begins to display erratic behavior and then has a love/hate relationship with medications and the friends and family trying desperately to help her.  In their own words these friends and family members describe the girl they knew, and the woman they saw toward the end that they barely recognized.  Her daughter described her as both "Mom" and "Linda".  Mom was rational and loving while controlled by medications, and "Linda" was paranoid and irrational when she was not.  

The documentary also briefly touches on the facility and doctors that tried to help her but eventually had little choice but to release her, without even the knowledge of the family.  This dynamic calls to question a person's right to have choices about their own care even when they are seemingly incapable of making good ones.  A doctor describes these individuals as "drowning in their own rights".  

What makes this documentary truly fascinating however, is that she creates a journal to describe her own decline and pending death.  In the fall of 2008 she finds herself living in an abandoned farmhouse, eating only apples from an apple tree and drinking water from the creek running on the property.  Its heartbreaking to hear her write that she is waiting to be rescued, as though she is trapped, when there is a house directly across the road.  She intentionally hides to not be seen and yet is awaiting rescue.  You begin to realize that the rescue she wants is from her own mind.  Amidst paranoia, a relationship with a purely fantasized husband, and her be comforted by the solitude, she cannot truly figure out her situation.

While there isn't much to correlate directly to Tyler, it is a fascinating study in mental health.  There are so many layers to mental health issues, and this certainly captures many of those.  By looking at the role the family played, the role she herself played, the institution, the current patient rights, etc. it provokes interesting discussion.

Give it a look and let me know what you think!

Be well and God bless.


Monday, August 19, 2019

Feedback from a Friend

Good Morning,

I realized this morning that a friend of mine, amazing artist, incredible human, and so-so author (I kid you my friend) Tom left feedback on the post "Deeper in the Woods" and I had yet to fully read it.  It was a little voice in my head that reminded me that I needed to read his thoughts.  Tom inspires me through his art and written word, but so much more by his gentle belief that only through care and love can we reach our true happy place.  

What I read humbled me right down to my socks.  The beautiful thing about our friendship is that we have often known what each other needed to hear without even knowing whats going on.  It's like a 6th sense.  His entire feedback is publish beneath the "Deeper in the Woods" entry, but I wanted to share a small piece of it:

What can I say, God, these are challenging times for you! I don't really know what to say except that your words here - so powerfully authentic, even gut-wrenching, (because they are so real, human and love inspired) are helpful and healing to all who read them. Not even so much because of what you are much as the fact that you want and need to share your deepest, most challenging, real life (in one way or another common to all of us) experiences at this time. The love reflected in your words is so obviously, and again - inspirationally rooted in your heart.

Those words reminded me of why I started this blog in the first place.  There are people, so many people, who are living as caregivers to children, siblings, parents, who are screaming my thoughts and words in their heads but cannot find the way to let them out.  Afraid to allow their most desperate, hopeful, or dark thoughts to see the light of day because of how others may react.  Or worse yet, upon hearing their own words, to have to come to grips with what they have said.

Writing from the most raw and unfiltered of places has its own risks.  Words typed through layers of emotion are not agreeable to everyone who may not understand those emotions.  Those who have never walked this journey may not grasp how a person might respond to things that happen around them.  But if I'm really, really lucky, someone will see a post and that will be the message that they needed to read at that moment of their life.  

On Sunday, Pastor John said something that resonated very strongly with me.  He said that when feeling grief it is necessary to allow yourself to really feel the emotions and express them as a means to process them and understand them.  If you have read my blog for any length of time you have heard those words come from me as well.  Our emotions and ability to express them is a true gift.  That gift isn't reserved for only thoughts of daisies and puppies (although I like puppies a lot) but for thoughts of desperation, frustration, and pain. These thoughts are also gifts that teach us things about ourselves and the world around us. 

I want to thank Tom for reminding me that life around us is hard, and sometimes downright impossible, but being true to one's authentic self is where we find the light to continue on.

Be well and God bless.   Tom

Sunday, August 18, 2019

A Favorite Tyler Memory

Just the other day Samantha looked at Tyler's graduation picture and asked me about it.  It brought back a wonderful memory that I hadn't shared for a while.  It's a story worth repeating....

When Tyler turned 21 he legally fulfilled his obligation to school and was able to graduate.  We were approached about how we would like him to receive his diploma.  Because he lived in Northeastern school district, and we paid the school taxes to them, he would receive their diploma, even though he didn't attend school there.  In reality, he attended his later school years at West York Middle School because that is where a suitable multi-disabilities class was housed.  To muddy the story a bit, he was actually under the guidance of a district called Lincoln Intermediate which housed classrooms within other districts.  So to recap...he was a student of Lincoln Intermediate, living in Northeastern, attending school in West York.  Need a scorecard yet?

He could graduate with the senior class at Northeastern....but he didn't know anyone there and they didn't know them.  He could graduate with a group from Licoln Intermediate, but again he didn't know them.  He could even graduate with the senior class of West York but again, same issue.  And I realized that the middle school was his home.  He was loved there.  The kids knew him there.  The faculty knew him there.  He was respected and taken care of there.  So I requested that he graduate THERE.  The school decided that at the end of the year, during an awards assembly, he would walk the stage and receive his diploma.  I requested permission to give a speech on his behalf, which they gladly obliged.

On graduation day his teacher stepped to the podium and began to speak.  She had loved him and taken care of him for 13 years and all of that seemed to come to the surface.  She wanted to make a speech, but instead she cried.  Those emotions spoke clearer and louder than any words would have done justice.  Dedication, love, encouragement, challenges, and triumph all flowed from her.  Miss Sue was and always will be his school Mom.

It was my turn.  I had written a speech and practiced it.  When I began to read the speech it didn't take long before my thoughts left it.  I was just going to say it from the heart.  I thanked everyone for the love and respect they surrounded him with.  It was every person in that room who lifted him up and carried him onto that stage.  They all walked with him to receive that honor in one way or another.  They played basketball with him, high-fived him in the halls, cheered him, and protected him.  I was as proud of them as I was of him.

Tyler then walked the stage to receive his diploma.  What happened next was pure magic that I will take with me to eternity.  Every person in the auditorium gave him a standing ovation.  They cheered him and clapped for him.  His perseverance moved them to tears and cheers.  For a moment time seemed to stand still as the love rained down on him.  It still gives me chills to close my eyes and remember that day.

This is a memory I visit sometimes when I want to remember the tremendous love that has so often surrounded him.  And it's a story that I can share with Sam to let her know the world can be a compassionate place if you look in the right places.

Be well and God bless.  Tom