Tuesday, March 30, 2021

A Post By Allen Schneider


Today I wanted to share the link for a post by Allen Schneider.  Allen is an incredible father and an amazing spokesman for special needs dad's everywhere.  His entire family takes the word "inspirational" and redefines it.

https://www.theautismdaddy.com/the-finish-line-my-most-difficult-day-as-an-autism-dad/?fbclid=IwAR03OKvBgTymohj5_7EtF6Z3-G96eWQHbm9b4vTb7FSRck3PXkbtQhc91e0

The host of this particular post is Frank Campagna, aka AutismDaddy, who is an incredible inspiration in his own right.

I can tell you that one of the most difficult thoughts that special needs parents face is how to manage a disastrous event with your child in the line of fire.  I can't possibly count the number of nightmares I have had where I can't save Tyler from something happening.  Its my mind playing out the fear of being helpless to save myself much less to save him.  Its the pure weight of being totally responsible for another human being manifested into terror.

Allen and his family have found running to be the most special of outlets for their boys and their lives seem much richer because of it.  But this story details their experience on the day of the Boston Marathon terrorist attack.  

The blog is so well written, and so intensely familiar to my emotions, that I could feel myself taking the journey with them, nodding all the way.

Please click or copy-and-paste the link.  Also buy their book "Silent Running" which is just as amazing as today's blog.


Be well and God bless.   Tom



Thursday, March 18, 2021

Tribute to Dick Hoyt

Dick Hoyt was a giant.  The world is a lesser place for having lost him this week. 

If you aren't familiar with Team Hoyt, Dick's son Rick was born with cerebral palsy in 1962.  The family was immediately encouraged to send Rick to an institution as there was no hope for him to be more than "a vegetable".  His parents held out hope because they saw something in his eyes that only parents can see.  With time, perseverance, and love, Rick learned to read, went to school, graduated college, and worked to develop special needs communication devices.

In 1977, Rick learned of a classmate who had become paralyzed, and he wanted to help.  He wanted to show his friend, and the world, that life can go on despite profound disabilities.  He and his father Dick ran their first race.  Rick told his father "Dad, when I'm running, it feels like I'm not handicapped".  That would be the beginning of a remarkable journey.

Dick would train (he was not a runner prior to the 1977 race) and build his endurance.  In all, he and Rick would run 72 marathons, including the Boston Marathon an amazing 32 times.  They competed in 1130 total events over the span of nearly 40 years. 

  



"Inspirational" is an oft-used word and I'm not sure it scratches the service of what Dick and Rick mean to the special needs community.  I watched a story on them once (I believe it was an ESPN story) and was in awe of the love and dedication between father and son.  They had found their way of leaving "disability" behind and simply tilted their heads into the wind and enjoyed freedom.  



I did not know the Hoyt family, but am part of the same special needs family with them.  Whether we are writing blogs, creating Muppet characters, writing books, or running races, we want to help our children leave a special mark on the world.  We want people to see that we are strong, thoughtful parents that our children are incredible people for what they can accomplish and mean to others.

God bless you Dick Hoyt....may you enjoy a long and peaceful rest.  You've earned that and so much more.

Monday, January 25, 2021

Visits with Tyler

We were able to visit with Tyler a few times over the last two weeks.  It had been 11 months since we were last able to see him in person, which was extremely difficult.  Fortunately with everyone adjusting to new protocols, we have been able to make brief visits with him.

Our first visit a few weeks ago was nerve-wracking, at least for me.  I knew he would recognize us, but would he become overwhelmed emotionally by seeing us again.  After all, he doesn't have any idea how long it has been, or why it might have seemed like such a long time.  We showed up with masks on which probably wasn't going to help matters.  He was somber.  It appeared this was likely his mood before we arrived, and our presence did nothing to change this.  He looked up a few times and stayed mostly expressionless and quiet.  We tried coaxing some words or expressions out of him but it wasn't to be.  After about 30 minutes we said our goodbyes and left.  We wanted to feel some sense of optimism from it all, but those attempts felt hollow.  The truth is, we were devastated to seem him looking grim and lonely within himself without the power to change it.  These changes in him began appearing long before COVID, but the pandemic has certainly exacerbated it.

Our second visit this past weekend went much better.  It was a beautiful, but cold day, so we took him for a drive-thru lunch and a drive along the river.  He seemed much more awake and responsive this time.  His sister asked if she could buy him a milkshake as a small token of her loving and missing him.  Of course we allowed her to, and he enjoyed every drop. Tyler also enjoyed the nice long drive along the river and rural areas heading back to his home.  I did notice some emotion in him as we settled him back into his chair, as though it was hard for him to transition from us back to the house again.  The ride home was more optimistic this time with all of us looking forward to the small things we can do on future visits.

I wish I didn't bounce from heartbreak to joy so quickly.  Seeing him places me in an emotional spin that makes me dizzy.  I love seeing him, especially when I can see that we are lifting his spirits.  But those days where he is somber and emotionally out of our reach, it is soul-crushing.  It is so difficult to explain because of how difficult it is for me to make sense of it myself, but jumping back to the hyper-vigilant mindset for such a short period of time is disorienting and scary for me.  Its like when I pick up a bowling ball after a couple of years....things that were automatic are now strenuous, and what seemed effortless is now clunky.  It might look similar to how things used to be, but they are very different.  

There is much upside to think about however.  We are now able to see Tyler and make sure he knows we are still here and that we still love him.  He has maintained his health and is ready to expand his life again when the time comes.  And warmer weather is not too far away so we can look forward to short walks and fresh air with him.  

Be well and God bless.  Tom  

Tuesday, January 12, 2021

Cool Things out of the Blue

Sometimes, even during these difficult times, cool things happen out of the blue that remind you that positive things are still all around us.  We are certainly in dark times right now, but sometimes a beam of light finds its way through for no apparent reason.

Today I saw a notification on a messaging platform but I didn't recognize the name.  I clicked on it and read one of the coolest messages I've seen in a while.  A gentleman was leafing through an old elementary school yearbook and saw Tyler's picture.  It made him remember Tyler fondly, especially his good nature and kindness.  Think about that, he still remembered Tyler 20 years later.  He went on to say he wanted me to know he enjoyed the blog and was thinking of Tyler and the family.

How absolutely cool is that?

I think it shows how much we all impact people's lives without perhaps realizing it.  And we impact those people through our demeanor and our actions, not necessarily by what we say, how smart we are, or the materials we have.  Its flattering to thank that Tyler may have contributed a small piece to this person's development and helped to shape him in a positive way.  Obviously this person is unique in that he was willing to reach out as a completely unknown person to just say hello and give a fond memory of Tyler.  Whether he realizes it or not, I won't ever forget that.

Sometimes our world is very dark, and my writings and my thoughts are dark as well.  I'm human and I express things the way the world effects me.  But there are good people out there who value empathy, compassion, and respect for one another.

Thank you "L" for the pleasant reminder.

Be well and God bless.    Tom


Saturday, January 2, 2021

End of Days?

 Someone recently asked me if I believed the pandemic was the beginning of the end of days.  Surprisingly, as opinionated as I am, I could not offer an answer.  It would be easy to dismiss the notion, but I am not that confident.  I recognize that there are forces much larger than I who have that answer.

So what do I actually believe?  I believe that whether this is part of the end of the earth, or simply a part of the human experience, we are being watched and evaluated.  

Let's face it, none of us have ever faced a test of this magnitude.  The loss of freedom to move about as we please, the loss of educational opportunities, the loss of resources, the loss of family members, the loss of close contact with other humans, and on and on.  

There are 2 life lessons that come to mind.  First,  true character is shown by what we do when we think nobody is looking.  In other words, we are only as good as what we will do, good or bad, when it is just us and our inner most gut that will know the difference.  When there are no outside influences, who are we REALLY?  I have mentioned this in my previous posts but it bears repeating; my dad has certainly not been a perfect father (none of us are) BUT he has instilled in me one very critical lesson, which is the fact that if you don't have your word and your integrity you don't have anything.  He taught me that regardless of how brutally right or wrong we are, we owe it to ourselves and everyone else to look them straight in the eye and be exactly who we are, and deal with it.

Secondly, true character shows up in the worst of times.  It is easy to be strong when things are within our control, but true character comes when our backs are truly against the wall.  The main question is: did we think of ourselves first, or did we think of others?

Unfortunately, in large part, we have failed this test spectacularly. As children, we are taught that the human soul is much more important than money.  We are taught that those who TRULY believe will honor and protect their brothers and sisters before they will protect money.  We are seeing a true test of this belief. 

Every person who argued that protecting others with masks and hygiene was a violation of their "personal freedom" you FAILED this test.  For every person who kept a business running against health orders, you FAILED the test.  For every person who held gatherings and intentionally risked the health of those around you, you FAILED the test.  You all forgot that 10, or 20, or even 30 years is merely a blink of an eye in eternity.  Whether you ran a successful pizza shop or shoe store or bowling alley is irrelevant when the end comes.

We will be judged by how we protected one other.  We will be judged by what we were willing to sacrifice for one another?  We will be judged by what we did when things were at their darkest?  Where we selfish?  Were we worried about one another, or by "personal freedoms"?  

Will you be able to hold your head up, look our savior in the eye, and say that when the darkest days were upon us you stood tall and protected your fellow man?  Will you be able to say that you pushed selfish and earthly needs aside?  

Be well and God Bless.    Tom