Wednesday, December 18, 2019

Bullying

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

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