The Allure of Baseball

Tyler has always watched a LOT of baseball on TV.  Something about it holds his attention and glues him to it..  It may be the motion of the pitcher and the swing of the bat that he enjoys so much.  Whatever it is, it has always prompted spontaneous speech and laughter like nothing else does.  He'd get right up nose-to-nose with you and holler "STRIKE!" or "HE'S OUT!" just to add to the excitement.  Even when trusted friends visited he would suck them into watching a few innings with him.  Strangely enough, going to a live game didn't translate.  I don't believe that he recognized it as baseball because the camera angle behind the pitchers shoulder wasn't what he was seeing.  We tried a few times to take him to a live game but with very limited appeal.  Baseball also had healing powers for him.  I remember he was in the hospital for a surgery and the minute we found baseball on TV he was ready to jump up and get moving.  

Baseball has a special place in my heart as well.  I grew up watching the Philadelphia Phillies when it was Mike Schmidt, Pete Rose, Steve Carlton, and Juan Samuel.  I wore Philly wristbands everywhere I went and could always be seen in my Phillies hat.  Best of all, a couple of times a year my dad would book a bus trip for him and I to see the Phillies play.  Sometimes my grandpa went too.  It felt great just having a trip to the ballpark with my dad.  He carried a water thermos on every trip he ever took in his life and this was no exception.  We would get the obligatory hotdog at the stadium, but on the way out of the park we bought a whole bag of soft pretzels for a dollar.  On the way home we dined on quickly hardening soft pretzels and ice cold water from his thermos.  It's funny what memories you will hold on to.

I don't watch as much baseball as I used to.  So much about the game has changed, which is a shame because I always viewed baseball as the perfect game.  I played for 3 years and despite my small stature, I wasn't half bad.  I liked second base; diving for grounders and tagging out runners.  Baseball is a game of strategy as well as physicality.  Its chess in one hand and sports in the other.  Should we leave this pitcher in or bring in the lefty?  Hit and run or straight steal?  Bunt?  

As society is apt to do, we failed to leave a good thing alone.  Our attention spans have gotten shorter so we want our entertainment to be shorter.  "Shorten the game!!" they scream.  So now we eliminated the intentional walk sequence, limited the mound visits, and put the pitcher on a timer.  "Make every call perfect!!" they say.  So we added instant replay and will soon use an automated balls and strikes system. I predicted years ago that this would happen, and will grow until umpires are no longer on the field at all. "Make the game more exciting!!"  they holler.  So we made the DH universal, are looking to limit the shift, and basically made bunts, steals, and hit-and-run plays obsolete.  "Make it safer!!" they implored.  So we don't allow the catcher to block the plate or the runner to slide through the bag to break up a double play.  Its becoming less cerebral and more brute-on-brute than ever before.  It's sad.  Dislodging the ball from the catcher, breaking up a double play, booing a bad call at first, pitching match-ups, and stolen bases made baseball great.  

Perhaps someday I will have a grandchild through Samantha and take them to a ballgame.  It would be fun to say that I attended games with my grandpa, dad, son, and grandchild.  5 generations that enjoyed Americas game even as its changes.

Be well and God bless.   Tom

Uvalde Elementary School

Its unimaginable that less than 10 days after posting about the Buffalo mass shooting, another tragedy has hit our country.  As of this morning, 19 children and 2 adults have been killed in Texas by an 18-year-old with assault-style rifles.

I remember the paralyzing fear I felt any time something would happen at school while Tyler was in the building.  Being less ambulatory and cognitive than other students, he would be entirely at the mercy of a bad situation.  He wouldn't have the ability to run, hide, or even fight back as the situation would warrant.  First, your mind goes completely blank while your brain fights to place all focus into one place.  Then, within a second, the brain fills with a million thoughts.  I'd almost instinctively try to tap into his mind to decipher what he might be seeing or thinking.  

One day perhaps 15 years ago, I received a call that no special needs parent (or any parent) ever wants: "we don't know where Tyler is".  I remember the blood draining from every part of me.  Fighting for information, fighting for the sense of where he could be, and fighting the urge to panic.  A supervisor in the care agency had come to our house to check on him and his day caregiver, and they were not there.  The caregivers were not permitted to remove him from his property.  They checked the park and other nearby areas but neither could be found.  While it was easy to consider the 100 logical possibilities, it was just as easy to imagine the scary ones.  Ty was out there with someone where he wasn't supposed to be with no means of defense.  He was essentially alone to fend for himself.  Fortunately the caregiver returned shortly after everyone came to the house to investigate.  She was instructed to stay off of the property so I couldn't interact with her, and she was immediately fired.  She never revealed where she went with Tyler.  Tyler seemed to be in no level of distress, and a head-to-toe exam did not uncover any concerns.  I'm still sick that I don't know where he was.

Image that nightmare 1000 times more terrifying.  Parents gathered yesterday in a reuniting building to learn the fate of their small children.  Unbearable hours had already passed while they prayed for the best but feared for the worst.  One by one it became reality for some families.  One report said the the screams and cries of agonized families could be heard in the parking lot.  Parents finding out that their young child, maybe 7 or 8 years old, spent their final minutes alone, bleeding to death on a floor.  Forever they will wonder if their child called out to them or simply cried silently while dying.  

Sadly, nothing will change.  Sandy Hook changed nothing and neither will this.  Gun-rights activists are already lining up their statements about our failing mental health systems and need for more armed guards.  There is truth to both of these statements, but their goal is to deflect all talk away from the actual weapons themselves.  80% of Americans support background checks, however, legislation stalls and does not pass.  If the 2nd amendment is "the rights of the people", why isn't the 80% also the rights of the people?

Lets pray that somehow we find a way to never allow another parent to feel that sense of panic ever again.  

Needing People - More or Less

There are times that I throw up my hands and say that maybe I will just become a hermit living on the beach and eating turkey and cheese sandwiches all day.  While its true that I can be frustrated with humans in general, I do like interacting with people.  Sometimes I need a little time away to re-energize and go back to the race.  I also think an interesting question is...would you rather have 100 friendships, or 10 close friendships?  The older I get, the more I feel that I choose the latter.

My children are currently experiencing very different needs as it pertains to peers.  Neither is right or wrong, but both show how different siblings, and people in general can be.

Tyler had a housemate for a few years that was a pretty good fit.  "K" was higher functioning, and understood how to avoid Tyler's triggers.  After "K" moved away, Tyler got another roommate, but that had opposite results.  Tyler became moody, defensive, and just generally unhappy.  Obviously this was no fault of the new person, it was just not a good fit, compounded by a run of incompetent oversight.  Once that arrangement was disbanded, we requested that Tyler be permitted to remain living in the residence alone, with only his staff there.  It was a blessing that this was granted, and now Tyler is the sole resident.  The changes in him have been staggering.  He is so much brighter, happier, and energized.  He interacts with everyone at church and looks forward to his Sunday milkshake afterward.  He is stronger and more verbal than we have seen in a long time.  In his case he needed less distraction from other people and more time to be a solo pilot through his journey.  As long as he has his support group and family to remind him how much he is loved and cared for, he is happy.

Sam, on the other hand, has experienced more need for interaction and support.  We are excited to end this coming week by allowing her to spend a day with her beloved pen pal from Charlotte.  It will be their annual get together at the beach.  For 6 years now, our once little girls have met at the beach and enjoyed a wonderful friendship.  

For those of you not familiar with the story, Sam was at the beach with us when she spotted a little girl playing nearby.  The other girl "S" was staying at the same building we were, so the girls made plans to see one another at the pool and the beach.  S's family and ours played along and cleared time every day for the girls to use the pool and beach together.  Sam would wake up in the morning and watch the beach from our room to see the second S hit the beach.  Once she saw S was on the beach Sam had no rest until she was able to run down.  S is very mature and patient which is especially good paired with Sam's rather bold and impatient personality.  Once the week was over, we exchanged numbers and encouraged the girls to stay in touch.  I make sure to see when the Charlotte clan will be at the beach so we can meet up for at least a day.  Its a friendship that may just stand the test of time and distance, but we shall see.  

It seems funny to me that for one of my children I am advocating for them to be alone, while doing the opposite for the other.  Its an example how the typical world and the autism world can be so many miles apart.  Its also yet another lesson in how the goal is to have happy children, and not "normal" children.

Be well and God bless.    Tom

Our Self-Inflicted Wounds

This weekend we witnessed yet another mass shooting in the United States.  We also witnessed yet another example of the racist divide in our nation.  We continue to do this to ourselves, and we have yet to have the courage to stop it.  We CAN stop it, but we choose not to.

Every time this happens, I will take to this blog and be a voice for those who distain the violence.  I've decided now that no one event will cause this country to change its mind about the role of guns in our society.  Columbine didn't change anything, Las Vegas didn't, Orlando didn't, and saddest of all...Sandy Hook Elementary didn't.  Some in our society manage to make the issue about something else, like mental health, for the sole purpose of protecting their sacred gun rights.  To them, dead children or a few innocent dead black people in a supermarket is an acceptable price to pay.  They won't ADMIT that out loud, but it is 100% true.  If they gave a shit they wouldn't argue about registering guns, background checks, or capacity limitations.  They don't want any regulations, and if that means innocent people die, so be it.

Racism is also to blame.  We, as Americans, spend our time thumping our chests about how we are the greatest nation on earth, while at the same time continuing to be a nation run by old white men.  When Obama was elected President, gun sales rose in historic numbers because of the fear of a black uprising (whatever that means).  Gun sales then declined as dramatically once the the black uprising didn't happen.  Today we use the Trump rhetoric to thinly vail racist principles.  "Make America Great Again" equates to "Make America White Male Again".  Trust me, I hear vailed racism every single day.  Anyone using the term "those people" when talking about any non-white group is a screaming racist behind closed doors.  Try a little social experiment...consider the percentages of whites, blacks, and Latinos living in our country....now count the same groups at a Trump rally.  See if the percentages are the same.

Organized religion is also to blame.  Let's be completely honest, none of the religious leaders will talk about gun violence.  Period.  Gun rights are a conservative talking point and they would never bite the hand that feeds them regardless of the lives being lost.  Abortion?  Oh you bet they will throw their hat into that ring.  The "sanctity of life" is on a sliding scale politically.  Prior to the children at Sandy Hook being born, the evangelical right would have been more than happy to pass legislation to protect them.  Once they found themselves at the end of an assault rifle....meh....not so much.  

Until people begin to CARE...nothing will change.  And I don't see that changing any time soon.  We are in a "me" culture.  I'm not talking about the kids....I'm referring to the adults.  A teacher I know explained to me that the school children were very compliant when asked to wear a mask during COVID, but the parents were horrible.  We saw signs on some of our neighbor's lawns accusing schools of taking away the freedom of our children (even though a million people have now been killed by COVID).  As a society we are not only entitled, but ignorant.  That is a hopeless combination.

The hate has to stop.  The gun violence has to stop.  The racism has to stop.  Our turning our heads because of political allegiance has to stop.  Left and Right has to stop and turn into RIGHT and WRONG again.  There used to be values that didn't hinge on political ideology.  We respected the law, our church, our leaders, and doing right by others.  That's been replaced by Jan 6, Trump, walls, guns, and hate crimes.  

Meanwhile there are 10 dead Americans, minding their own business at a grocery store, gunned down because somebody didn't like their skin color.  And not enough people give a damn.

How Far is Too Far?

Special needs families have a very delicate balance that we try to maintain.  Unfortunately, we also deal with more variables than the typical family does, which makes that balance even more difficult to maintain.  Shifts in any form, be it politics, social values, or even weather, can have serious consequences to our way of life.  You will find that many special needs parents become nervous when changes happen, because typically they are for the worse and not the better.  That's not pessimism, that's fact.  I've been Tyler's Dad for 30 years and never have I said "WOW!  I can't believe how much funding is being put into our special needs kids!  Now we have plenty!".  

As Tyler's Dad, I try not to need anyone more than what is necessary to fulfill his needs.  But that alone requires A LOT of people.  We have to hope that those people are kind, empathetic, and interested in the common good.  Unfortunately, I will give you a sad truth: empathy is becoming more uncommon.  Empathy is endangered and that scares me.  

Believe me if you like, or choose not to....but there is proof all around us.  All you have to do is drive for 5 miles on any occupied road.  At the first stoplight there will be someone in front of you that won't be paying attention when the light goes green because they will be on their cell phone.  They believe that whatever conversation they are holding is more important than your safety and wherever you are trying to go.

Governor DeSantis is in a pissing match with Disney over his new education law.  Personally, I'm not upset about the law itself, but his reaction to Disney's reaction.  Instead of turning the other cheek or encouraging Disney to use the channels available to challenge a law, he used his political power to change a 50-year-old zoning decision that has the potential to have severe economic impact on lots of people that could care less about this feud.  This is dangerous.  And frankly, I'm more disappointed with the people who openly support this type of ramrodding for purely political one-ups-menship.   What happens if the next Governor decides that we spend too much money on special needs adults and we should group them by 10's in large group homes to save the tax payers money?   How far is too far?

On the radio I heard an ad for a political primary that promised to fight "idiot socialists".  First of all, most of the people listening to that ad are not educated enough to understand what a socialist REALLY is.  It's a scary term that gets thrown around to rile up the uneducated.  But again, I don't have a problem with someone wanting to speak against socialist ideas, its the use of the word "idiot" to enflame one groups hate for another.  We have already seen a riot on our Capital....so how far is too far?

Representative Greene stood up in the middle of a speech by the President of the United States and shouted at him.  In our country we have a zillion forums in which to speak such as Facebook, Twitter, news outlets, newspapers, and the list goes on.  She has the freedom of speech she needs to state her opinion one hundred times over.  Flouting the level of disrespect in those actions is dangerous.  What if we devolve into every speech becoming a chaos of shouting and disgusting displays of ignorance?  How far is too far?

If you are over the age of 40, you grew up during times when none of these actions, by any faction, would have been tolerated.  There were always lines that we didn't cross because we knew they were WRONG.  Now we are accepting abusive behavior when it suits our overall agenda.  That is frightening.

What's worse, in my opinion, is that we don't call things for what they are.  Instead of weakly defending what we know is wrong, why not tell the truth?  Just say..."I understand that we have a problem with bigotry in this country, but as a white middle-class person I prefer my leaders to be white males." Or...I understand that we have people that go to bed hungry every night, but I don't care because I was able to get mine."  Or....I know a lot of innocent people die due to gun violence, but I find my freedom to be more important than innocent lives."  At least if we are going to ignore the problems we should admit the real reasons we have them in the first place.  This latest social deterioration is due to middle-class white Americans being threatened by anyone different wanting an equal seat at the table.  They are threated by homosexuality, threatened by Muslims, threatened by Black Americans, threated by Hispanics, and threatened by science.  Someday, they may become threatened by those with mental disorders.  

And maybe someday we will wonder.....how far is too far.  

Tyler's Sunday

We had a great time with Tyler yesterday.  After church we celebrated his birthday by taking him for some Mexican food.  He loved the food, but he was much more interested in interacting with his family.  It was so nice to see him so smiley and engaged with everyone.  Its easy to tell that Tyler currently feels very safe and comfortable with his life.

Its hard to wrap our brain around what life has brought us over the last 6 years.  We have experienced some dramatic losses and equally dramatic victories.  I'm proud to say that we have kept our head up and fought for the important things along the way.

One question always seems to come up around Tyler's birthday or other holidays, which is "what can we do for Tyler's birthday?.  After all, he doesn't truly need anything that isn't already provided for him.  He isn't a gamer, he isn't into using a phone, and he doesn't drive.  So what does he need?

A better world to live in.  That's the way that we can truly honor Tyler.  We can reach out to just ONE person and make their life a little better.  Maybe a person is going through a person tragedy and needs to hear some encouragement.  Maybe someone just needs a hug and to hear everything is ok.  Perhaps you have lost contact with someone and they would be overjoyed if you just dropped them a note to say you are thinking about them.  

This is how we honor Tyler.  It takes a lot of dedicated people to care of Tyler which is the most wonderful gift he could receive every day.  So take those gifts and pass one on to someone else.  

Be well and God bless.  Tom

Birthday Memory #2

Its hard not to smile when I think about the many memories of Tyler visiting the beach.  I'm sure our enjoyment and relaxation of the shore is something that he sensed from a very early age.  I also believe that his love of the beach came from an organic source, something that we cannot fully understand.  In typical Tyler fashion, he was always thrilled to get there, but after about 4 days you could see his mood wain as he needed his routine to return.  Of course those trips weren't without their own set of challenges, but this week we are focusing on the good memories.

During the early years we took Tyler to Ocean City Maryland.  In those days he was very easy to travel with.  He was content to go anywhere and was happy to do just about anything.  We had a camcorder back then and used it to film him doing all sorts of nothing.  I remember sitting at the Dough Roller eating breakfast and showing off his first tooth popping through.  We filmed him sitting on my shoulders as we walked down the boardwalk, and sitting in his car seat on the beach one morning.

Once we discovered North Myrtle Beach some of his fun activities changed.  During this time he was in his pre-teen and teen years.  I remember him still loving the swimming pool and floating around making faces at himself.  He'd get out of the pool and sit blowing bubbles or using bubble guns for hours at a time, laughing hysterically at himself.  His other favorite pastime was sitting at the edge of the water with a small plastic shovel and flicking sand out into the water.  He would always have some crazy sunglasses on and slathered in sunscreen so he could enjoy the water's edge for as long as possible.

Perhaps my favorite time was around dusk when the sun was just setting and the evening was beginning to show its colors.  The water would feel even warmer as we would wade out into the waves.  Ty would just stand and gaze out into the vast openness.  I'd try to figure out what he could be thinking.  Whatever it was, he was at peace with it.  It was as though the ocean whispered comforting thoughts to him, and surrounded him with an embrace.  He'd point to the moon or just watch the waves rolling in.

  

Even if these experiences were temporary and changed over time, they provided memories of a gentile and soft Tyler that we rarely saw anywhere else. Thanks to our beautiful friend and artist, Tom Newnam, we even have a painting of Tyler standing the waves and pointing at his friend, the moon.  These are the memories that sustain us. 

Happy birthday Tyler.  We love you to the moon and back.

Dad  

Tyler Turns 30

It's almost impossible to absorb the fact that Tyler will be turning 30 in a week.  Those 30 years have provided the most joy and challenge that anyone could imagine.  One thing that I do know is that I still love him today as much as I did when I first laid eyes on him.  

It would be easy to remember some of the struggles of the past 30 years, but instead, I will be doing a small series of posts talking about the good memories I've shared with him so far.  These will be the memories that I always gravitate to when I think about his infectious laugh and bold personality.

When Tyler was very small, I was only in my early 20's.  I still enjoyed bowling, playing softball, and watching sports.  Tyler seemed to enjoy watching sports too.  One particular thing we watched together was pro wresting.  Tyler was so small and light that I could pretend to wrestle with him on the floor, couch, or bed, and he would giggle and just go along with it.  While it may have looked like I was "rough-housing" with him, Ty was laughing all the way and asking me to do it more.  "Again!" he would say and would want gently rolled into a pin or bodyslammed against a stack of pillows.  Through all of the theatrics Tyler was supremely protected without question,

His favorite thing was if I laid down beside the couch he would scramble as fast as he could onto the couch and do a cannonball right on top of my chest.  I'd act like I was being crushed by a 300 pound giant and groan in pain.  He'd laugh and scramble right back onto the couch to bomb me again.  The swimming pool was the same story, he scrambled to the edge and flew into my arms without a care in the world.  If I close my eyes I can hear him imploring me to let him leap into my arms over and over again.

Back then we were just goofing and having fun, but it didn't take long to realize how this helped cement our bond like nothing else could have.  Tyler is all about trust, and our play was full of him trusting me to understand his body language and manipulate his movements.  He figured out that he could fly off the couch and I would be there to catch him just right and never let him fall.  He could go upside-down or spin in a circle and never worry about how soft he would land.  

And so it has always been with Tyler and me.  He learned to read my body language as much I learned to read his.  We often use physical contact to convey unspoken messages to one another, like a language we developed through time.  As he has abandoned much of his expressive language, these non-verbal queues are even more important.

So with this I wish my cannonballing little man a most joyous 30th birthday!

Be well and God bless.    Tom

An Ode to Sam

We've gone through the mood swings, the ups-and-downs, the aggressive behavior, the tantrums, and the frustration that the child has had to offer.

OH....I'm not talking about TYLER.....I'm talking about SAM!!

Yes, we thought raising an autistic child was the ultimate challenge, but that was before navigating the rocky waters of a 12-year-old girl.  If you never raised a girl, much less a pre-teen girl, let me give you some insight.  

1. You are never going to win.  We sway back and forth between being parents that aren't helpful at all to lecturing too much.  "Help me.....LEAVE ME ALONE!"

2.  See rule number one.

Nostradamus didn't look at things being the end of the world as often as she does.  If he did, he might have predicted that losing your headphones, having the wrong thing for dinner, or being asked to clean something in your room, would lead to the sun careening full speed into the earth and killing us all in a fireball of pre-teen inferno.  Satan himself would rise from the flames and we would all learn that he is simply a 12-year-old that had his phone privileges taken away.  

My parents will become so satisfied to read this and I can hear them saying it...."now you know what we went through".  To this I call bullshit.  I grew up watching bugs bunny and pro wrestling.  The worst I was going to do was shoot someone with a bazooka or hit another kid with a steel chair.  You know...harmless kid stuff.  But now we are watching pre-teen and teen shows that pretend parents don't actually exist, and kids transporting themselves from one drama to the next without supervision.  My biggest electronic obsession was Atari.  Trust me when I say this...in 1979 it didn't hook up to the internet. Basically the only place you were going to find a pervert was at the local Dunkin Donuts pay phone booth. Now we have to worry about snapchat, tik tok, twitter, and a whole host of other platforms that kids flock to.  Danger could be lurking in the corners of their own phone and we may not even know it.  A bad day for us might have been skinning a knee riding our bike.  Now our kids have to worry about cyber-bullying and worse.  We didn't feel compelled to grow up quickly, and our kids think they are 30 before they are 12.

And yet, my daughter is amazing and beautiful, inside and out.  Within all of the turmoil and battles for independence, there is a sweetness and generosity that shines through.  Being wise behind her years is a challenge for her now but will serve her so well in the future.  She is strong and determined, she just needs the circumstances of the future to slowly come her way.  I have no doubt that she will be successful in whatever she decides to do.  Even when she believes that we are being "mean" or that we "don't care", we are so proud of her and are doing everything we can to help her have a happy life.

I watched her Sunday singing in front of the congregation, making the people smile as the praise group sang their songs.  And I watched her hug her brother and tell him that she loved him.  Yesterday she received her second exemplary report card for this year, nearly all A's.  She gets involved with school activities like chorus and student groups aimed at making school better and more inclusive for everyone.  When I look at her I can only wonder if she realizes how special she is, and how proud we are, and how much we love her.  With the mixed messages the world offers up, it may be hard to see this for a sassy 12-year-old.

My prayer for her is that she continues to harness that courage and intensity, and use it for positive causes for herself and others.  That she understands that those around her that love her so deeply will not be with her in body forever, and that she should cherish each day with them.  And that her special gifts are rare and meant to be shared with everyone.  And maybe once, for heaven sakes, clean her room.

Be well and God bless.    Tom

What is a Hug?

 "Squeeze tightly in one's arms, typically to express affection."

It's quite possible that hugs are one of the most forgotten things that humans are capable of doing.  Hugs are a gift that we can give, at no cost, which represent our most warm and vulnerable parts of us.  

I remember my friend Ronnie, who I lost many years ago, who really taught me that we should truly love our friends.  He used to greet me every time I saw him, with a hug.  As a twenty-something male who wanted to be masculine and cool, it was a little weird at first.  And yet, it became something I was able to understand.  His hugs told me that he was happy to see me, he loved me, and how he felt transcended anything that was normal macho.

I remember the time at Disney World.  It was our last time taking Tyler with us and I knew it.  Tyler had become too complicated to travel so extensively with, and I was becoming too worn down to pull it off.  One day we were at Epcot and had a pass to do a visit with Mickey Mouse.  We took some terrific pictures as a family, including my inlaws, As we exited, Mickey came over to me and offered me a hug,  This was no ordinary hug.  This was the hug of a person who was sending a message of love and encouragement.  I will never forget the meaning behind that embrace.

I remember my grandfather-in-law John who may have never hugged another man in his life.  But being someone that I was around for so many years, and had come to respect, I attempted to show him some affection.  I would hug him, or even give him a kiss on the cheek.  At first it seemed very foreign to him, but he never totally resisted the idea.  By the time he became significantly older, he was actually used to a little friendly affection, and a few other people were able to show him love as well.  

Along the same lines, I've been able to be much more expressive with my inlaws as well.  We have all been able to learn, through our many experiences and challenges, that hugging one another and telling one another how important they are, makes our lives better.  Its like an antibody against the negative viruses the world attempts to throw at us.  

It sounds like such a dumb thing.  Hugging your friends and your family can be the most memorable and impactful thing that you can do.  In that brief few seconds you are literally giving yourself to another person.  You are releasing love and support without saying a single word.  Its like a transfer of positive energy and strength.  

 Challenge yourself to hug your friends.  Even if they may find it awkward, hug your friends.  COVID has taken so much personal contact away from us, social media has eroded so much personal contact, and our own anxieties have backed us away from others, to the point that we have forgotten the importance of simple affectionate gestures.  Your willingness to openly love someone may give them that moment that changes their own approach to others forever.  

Be well and God bless.   Tom

The Greediest Place on Earth

Some of my fondest memories with Tyler occurred during our visits to Disney World.  A big reason that these trips were even possible, was the kindness and expertise by which the family was handled.  Of course Disney was expensive, but it was manageable for our little group.  

We started going in the year 2000 during their millennial celebration.  It was just Robin and I that year, but we learned that Disney might just be possible for Tyler, and we took a chance in 2001.  Over the last 20 years we may have done Disney nearly a dozen times.  The great memories are endless for all of us, Samantha included.  Tyler screeching in delight on the Tower of Terror, Samantha being picked to be Belle for the Beauty and the Beast show, giving Robin her 25th anniversary ring in front of the castle, meeting the cast of the Nemo musical, and on and on.  Perhaps the most special part was being able to enjoy many trips with my in-laws, and seeing them having the greatest time with their kids and grandkids.  We used to take these trips in May, right around Mother's Day, to avoid the crowds and stifling heat (although we often had 90 degree weather anyway).  

As the years continued on, and the trips continued, we started to feel a little less of the "magic".  A recent trip in particular we experienced that feeling of questioning the cost versus the experience.  Subtle changes made me wonder if I was their focus, or the money was the focus.  A park ticket that cost $50 per day now costs over $100.  Food experiences are easily reaching $50 per person at every meal.  An estimate on the cost for a family of 4 is now $4500 to $7000.  I'm not a baby, I understand they are their to make money, but they always did a good job of balancing that with giving a forever experience too.  That was changing...

The cost isn't the only negative thing happening at Disney World.  Fast Pass is now completely gone which was a HUGE planning tool that I needed in our situation.  Fast Pass was a system which allowed you to plan 60 days in advance for reserving 3 rides.  For us, we could decide the 3 rides that Tyler would enjoy the most, and would also have the worst lines or handicap access, and insure we could get those done without fail.  The remainder of the rides and experiences would be those that would be less difficult to manage lines, or less impactful if we had to skip them altogether.   Now there is a new system, no longer free ($15 per person per day) that allows you to try and schedule rides on the day of your visit.  So instead of having the times figured out months in advance, and sticking your phone in your pocket on the day of you visit and having fun, you now have to be ON YOUR PHONE during the day trying to schedule your next activity.  There is also strong conjecture that Disney uses their app to manipulate where the guests go so they can maximize their dollars (not yours).  Do the math...$15x4=$60x7=$420 additional bucks onto the family cost.  NOW...if anyone wants to ride the premier rides without waiting in line for hours, they need to pay $7 to $15 dollars EXTRA for that ride. Say the same family does both rides for an average of $10 per ride...$40x2=$80x7=$560.  In theory, if your family wanted to do every ride and wanted to skip the line for the busiest ones, it will now cost you nearly $1000 to do so.  Before this year the cost was $0.  

So how about handicap access?  When we took Tyler with us, we were able to get a card which allowed him to go to special access areas of most rides.  During the short wait, we were merged in as the accommodation was possible.  Usually within a few cars or boats we were able to load him on.  Some cast members even asked us if we wanted to ride a second time if things weren't crowded.  This was also a good way for us to get our fill of the experience and not need loaded and unloaded a second time later.  One thing to point out here...we never tried to take advantage of any service at Disney.  We were always treated generously and in return we made sure not to be unreasonable with our requests.  NOW, according to Disney's website, you pre-register for handicap access and you pick 2 experiences to get fast passes for, and then you get the regular program the day you go.  This may be helpful, but will certainly not be as guest-friendly as before.  Its great to have 2 additional ride passes, however, to think a special-needs parent can spend large amounts of time on their phones plotting the next activity is not reasonable.

So what does all this mean?  I used to recommend Disney for special needs families.  I won't do that anymore.  They have shown now that families are NOT their target audience.  Young, tech-minded people without young kids are the target audience.  The new system once you enter the park has been described by techies as confusing and complicated, so how is a non-tech-savy family ever going to get their value out of the visit.  Or perhaps the family needs to have their phones in their pocket, their eyes up, and enjoy what's around them. I thought Disney was where you went to escape?  I thought Disney was about family time and sharing experiences?  Those days are gone and they aren't coming back.

Unfortunately for young families, and special needs families, the "Happiest Place on Earth" has become the "Greediest Place on Earth".  And I, for one, pass.

Be well and God bless.

Tom

Ty and Sam

 I'd like to show you a beautiful picture:

Those of you who have known us for a long time might be surprised at this picture.  For us it was an unbelievably touching moment.

Tyler has never been a fan of children.  For some reason he acted as though he was threatened by them.  They have always made him intensely nervous and upset.  If allowed too close to a small child, he will attempt to take a hit or kick at them.  

And so it was for Samantha as she toddled around the house in her younger days.  She had mostly good experiences with him, but there were times that he would give her a smack on the top of the head, or a kick, just for being too close to him.  We also did a tremendous amount of buffering to keep her out of harm's way.  Tyler and I would spend our evenings in the downstairs family room while the girls spent time in the living room on the main floor.  I would communicate signals to let the girls know when Tyler was coming to the main floor for a drink or restroom break.  This would mean Sam would retreat to her playroom or under the kitchen table until the coast was clear.  

Through all of this...Sam always loved her brother unconditionally.  She wanted more than anything for him to smile at her, or hug her, or make the sign for "I love you".  Even during her elementary school years she would write essays about how much she loved him and wanted him to be well taken care of and safe.  I admire her so much for her willingness to see beyond his disabilities at such an early age.

Over the last few years at church, Tyler seemed more comfortable with being around her.  Perhaps its because she has gotten older, or he appreciates seeing her more now that they spend time apart.  She has continued to bravely step into his circle and ask for hugs, or talk with him, which he has not objected to.

But today was different...

Samantha was up front by the Christmas tree and we took a few pictures of her.  I decided to see if I could get a picture with the 2 of them.  We got a few side-by-side and then I coaxed him to put his arm around her.  Instead, he pulled her by the shoulders toward him and put his hands in her hair.  He loves hair, especially Robin's.  Very gently he played in her hair and grinned from ear-to-ear.  He was truly enjoying her closeness and was being affectionate toward her.  What a wonderful gift this moment was. They now have a relationship beyond what I imagined they would ever have, and it is so wonderful.

I keep mentioning how difficult our current times are, but there are still blessings in our lives that we have to hold on to and celebrate.  If Sam could work to break through with Tyler, there isn't anything that any of us shouldn't achieve with love and faith.

Be well and God Bless.  Tom

Happy Holidays from Tyler

On behalf of Tyler and our entire family, I'd like to wish everyone a joyous holiday season.  Regardless of what you celebrate or who you celebrate it with, we hope the season is filled with love and hope.  We are in challenging times, perhaps among the most challenging in our history, but we can conquer anything if we do it together.  

Look at this face?  How could this NOT bring joy and hope to the world!!

Just Keep Digging

I have a friend at work who is currently in a health struggle.  What makes matters worse is that the current COVID environment is delaying his ability to get down to the bottom of what is happening.  He and I have always had a habit of checking up on one another.  We share a love for the same beach area, we both have children that we worry over, and we both try to pick the other one up when things are going cruddy.  It can't be easy when things are failing you and you can't get the answers as to why.  

When thinking about him, I thought about Tyler.  A few months ago, Tyler was not doing well at all.  He was struggling with quickly overturning staff, undertrained staff, and other issues that sent him into an emotional and physical nose dive.  Like my friend, we felt like we were fighting with both arms tied behind our backs.

For full disclosure, I could not be the caregiver I once was.  I think I swallowed so much anxiety for so long that it deeply effected how I could handle the same scenarios today.  I've become much more comfortable with advocating from the outer circle.  But one thing that still comes back to me is the ability to keep digging when things suddenly go bad.  It has become a survival instinct of sorts.  Here are the steps that work for me:

1. Give myself time to feel bad.  I know that sounds silly, but I need to have a short time period where I feel bad for myself, get quiet, sulk, take long walks, drink too much bourbon, or just kick rocks.  It cleanses me and allows me to move to the next step.

2. Assess my situation.  Now that I've thrown my hissy-fit, I can now take a deep breath and assess where I am.  This is important!  I look at what my REAL problems are that need to be solved.  Once I start fighting it does no good to punch at the air.  What needs to happen to turn things around?

3. I start digging.  I find myself feeling better when I am active in the solution process.  This is where the e-mails start flying, and the phone calls.  Time to start gathering the troops of people who can help you dig out of the hole.

4. I get persistent.  Once I have my targets figured out, and the ball is rolling, I keep digging until something changes.  I tell myself that nothing will happen until something happens.  And then I dig some more.

I used to watch The West Wing, and they told a story on there that goes something like this:

Man falls into a hole...doctor walks by and the man says "can you help me out?" The doctor throws him a prescription and keeps walking.  A priest walks by and the man says "can you help me out?" The priest says a prayer and keeps walking.  The man's friend walks by and the man says "can you help me out?" and the friend jumps down in the hole.  The man says "are you crazy??  Now we are both down here!".  The friend says "Yeah...but I've been here and I know the way out".

We are all falling into holes right now.  Some are much deeper than others.  Its the really deep ones that get scary.  They can become dark, and exhaust us so badly that we feel like they have swallowed us whole.  But we have to keep fighting and digging.  And when we get tired we let someone dig some for us until we finally find the way out.  

To my friend and all of those trying to find the way out.  Just keep digging.  

Be well and God bless.   Tom

5 Year Review

 Its been 5 years since Tyler entered a residential facility.

5 years.

I think it would be fair to summarize the last 5 years for everyone.

So often I read comments people post stating their son/daughter could not enter a long term facility because they would not survive.  I have said before and I will say again, that for the MOST part, this is self-serving bullshit.  Before you condemn me for saying so, please understand, I am qualified to make that statement.  

Five years ago I said those very words about Tyler.  "He will implode without me" was my phrase of choice.  That phrase empowered out co-dependency.  What I was really saying was that I couldn't face the fear and the guilt of what that separation would mean.  The truths that stared me straight in the face 5 years ago was simple...I will die before Tyler.  My wife will die before Tyler.  Ty's sister has the right to choose how she lives without pre-determined obligations.  If I didn't secure his future he might have someone else do it after I am gone.  While that might be great for me (dead people feel very little guilt), it would be horrible on Ty, and I wouldn't dream of leaving his living decisions to a stranger.

5 years ago I left Tyler at the kitchen table of his new home...with someone to watch over him that was not me.  For days I thought the absolute worst, and to a degree that was exactly what was happening.  I was being pulled away from my co-dependency and so was Ty.  We both experienced anxiety that was consuming and terrifying enough to make anyone consider themselves crippled by it.  But time marched on.

Within about a year, we both turned a corner.  But I still remember some very shrewd advice I was given prior to the transition.  The person told me "residential homes will be a 50/50 relationship of love and hate.  She was absolutely correct.  50% of the time things are smooth and 50% of the time you wonder what the hell is the matter with people.  

Now, 5 years later, we count our blessings.  Tyler is relatively healthy and happy.  There are people assigned to him that have accountability to do the right things.  There is a TEAM of people now assigned to what my wife and I tried to do ourselves.  BUT...we have things we must remain diligent about.  Doctor appointments seem to get postponed, turnover is high and compromises trust, and people must be thrown in without a real working knowledge of the client.

In five years I've learned more lessons than I can count.  Ty CAN live without me in the right scenario.  I will never be any less of an advocate or defender of Ty regardless of where we are.  When you have good staff members, love them and protect them.  Looking out for Ty's future, and the future of the rest of the family is not anything to feel ashamed over.  And for God's sake don't ever stop fighting.  Be fierce and never waiver.  

If you are agonizing over the decision to release your special child to residential care, please reach out to me.  The decision needs to be based on facts and not the emotion of it.  While that is a million times easier said than done, it is the right way to be a steward for your loved one.

Be well and God bless.   Tom

The Sunshine Chapel

I often write about things that I see around me in my own walk through life.  Sometimes these nuggets come from my religious experiences, one of which I will talk about today.  

The older I get, the more I seem to find comfort in a natural approach to my belief in God.  What I mean is, I find spirituality in simple and natural things like the woods, the beach, family, friends, etc.  These things touch me in deeply spiritual ways because I feel God's presence in them.  I believe that God intends us to be in harmony with one another and with the goodness of the earth he created.  When I hug my family and I feel that love, I am one with God.  When I walk on the beach and enjoy the magnificent creation in front of me, I am one with God.  When I go to work every day and serve my fellow employees by keeping them safe from harm, I am serving the purpose God intended me to serve. I'm at peace with this now like never before.

On the flip side, as I find myself more in tune with this natural approach, the less I feel in step with organized religion.  Overall, I believe that organized religion has become lost in the trappings of the material world.

Sunday we discussed how we are to use truth and dedication to God as our armor against evil and sin.  A message that I certainly agree with.  We all sin and we all lie, but if we all dedicated ourselves to trying to always be truthful, we would find a world that could turn itself around.  We talked about how what we see everyday through news and advertising is made to bend the truth, twist it, and use it for underlying purposes.  Again...you get no argument from me.  Now more than ever, we are being taught that stretching the truth is normal and acceptable.

But organized religion does its own form of deception and fails to fully take account for it.  The Catholic religion is still finding the depths of their sexual abuse toward children.  Imagine how many lives have been destroyed by the very thing intended to save them.  Turn on your television at 6am on any Sunday morning and I promise you that there will be "preachers" telling you to sow $1000 seeds and you will suddenly have the bank forgive your mortgage and checks appear in your mailbox.  Evangelicals still nearly unanimously support the Trump administration who are deeply undermining the country by lying about election fraud that has for nearly a year been disproven over and over and over again. I've yet to hear this addressed by religious leaders.  

Organized religion hasn't attempted to harm anyone, and it certainly does have many wonderful people who do many wonderful things within it, but make no mistake, as an institution it chooses its battles very carefully.  Lies are to be called out as long as they are certain lies, but not others.  Politics and religion run very closely together, although they will largely deny the co-existence.  Being outspoken about certain sins from certain people while quietly turning away from others is a pattern that has become more and more the norm.  

This is where I look at my son and I think about what brings out the good in him.  He is at peace when he walks in the sunshine, when he feels the love of another person, and when he feels security around him.  I believe that he is a shining gift from God because he is allowed to live in a simple way, free from the desire to be deceptive or feel the hurt of being lied to.  He appreciates the beautiful things he can see, without the noise that the human world has established around it.  Is there any reason why I wouldn't want the same for myself?  As has been the case so often, I've so much that I learn from him as life goes on....

Be well and God bless.   Tom

Time

Time is a comforter that tells us we will heal

It offers the promise of long and happy days

We look forward to the secrets it will reveal

Like paintings swirled with lights and grays

Time is a master of lies and crude deception

Watching us grow old and crooked like trees

Fading memories and heartbeats without exception

Reminding us there were never any guarantees

Time marches forward without the slightest care

The ground rumbles beneath its strides

Merciless and ignorant to what is fair

Bringing forth and wiping away like storming tides

Time can be gentle and soft like a lazy cozy nap

Where breezes and sounds surround the room

Sunshine on a wooded path or a puppy on your lap

Or rainy day popcorn and movies to chase away the gloom

Oh time is what we make of it, this is sure

We cannot stop its march but we can embrace it

Our mission is not to simply survive or to endure

But to come to the starting line and race it

Pieces of Me

 I've always been a deeply sentimental person.  It just seems to be part of my nature.  When I receive a gift that is personal it is something that I hold in extremely high regard.  

My Dad gave me a watch a few years ago that I will never part with.  The painting of Tyler by the ocean is an heirloom that I hope to pass through the generations.  I have a Christmas ornament which is really just a photograph of my Grandfather with cotton balls stuck on it to make a Santa beard.  These are some of the things that I cherish because they came from the heart of someone special to me.

I received such a gift today.  A few of my friends at work have listened to my ongoing saga about trying to find a small condo at Myrtle Beach.  This is something I have dreamed about for over a decade.  I've also talked endlessly about how much the beach means to me and how it puts me closer to Tyler because of the time we spent there.  Recently, we have found a little place close to the beach and we are so excited to be working through the process of finalizing it.

I was surprised when one of my friends, Kevin, told me that his wife had a house-warming gift for me.  Now we all seem to share great, biting, and sometimes cynical senses of humor so I wasn't sure exactly what to expect.  But his wife, Christy, is a very thoughtful and articulate person so I was intrigued at the thought.  Today Kevin pulled me to the side and said Christy was dropping off my gift.  I felt a little embarrassed, after all, they are a young couple just buying a new house of their own so surely they have better things to worry about than me and my silly beach condo.  But there she soon was, presenting me with my present.  

She explained that this was no ordinary shell, but that this was a shell she found over 10 years ago in Cape May.  She was just walking on the beach and couldn't believe she found this big, beautiful shell.  She has kept it every since and cherished having it.  She said that when she heard about Tyler's story, and our story of holding memories of our beach time with him, she wanted for me to have it.  

It is a beautiful shell, but it means so much more because it was a piece of her and Kevin.  It is a piece of her story that she wanted to become part of our story, and I can't think of anything cooler than that. This shell will have a very special place in our new home and will undoubtedly become a story we will share with others.  

This piece of her, and piece of my friend Kevin, is now a piece of our family.  It is a piece of our story. And as such, it is worth all the gold in the world.  

Be well and God bless.   Tom

Don't Forget to Dream

 To my daughter,

My beautiful and stubborn Sam....you are so much like me.  As you move through your life you will find that our particular way of thinking makes the good times very good, and the bad times very difficult.  But you will also find that every joy and pain is worth the trip.  There is something I want to tell you today, and that is to never stop dreaming.  

When I was about 8 years old, I dreamt of playing for the Phillies.  I was a solid young baseball player and I just knew the Phillies would want me at second base. Within a couple of years I had become a good young bowler.  My dreams suddenly shifted to become a world famous professional bowler.  I imaged being on TV and becoming a legend in the sport.

While these dreams may have been true longshots, they were extremely important at that time.  I didn't have a ton of friends in school but those teammates I had outside of school were my family.  Because I was very small I had to endure some bullying at school but I knew in my heart that I was good at other things.  I was driven to make my dreams come true so I could show the world what I could really do.

Even though my early dreams didn't come true, I always found a new one.  You see, dreams should be big and seemingly impossible.  Dreams don't always happen, but they should be incredible if they come true. If they do come true, or even come close to coming true, they should change your life forever.

After my bowling dream, I lost sight of dreaming for a while.  One of the few things that made me happy was writing.  I found myself dreaming that my writings would become public, and actually help the people that read it.  Soon I had a blog with over 50,000 views, and then I had a magazine article, and then a national website article.  I also began getting feedback that my words were helping people.  Some people commented that my writing spoke for people in ways they were not able to do for themselves.  Hearing that touches me beyond words.

I wasn't done dreaming yet.  Over the last few years I wanted a little beach place to call my own.  I wanted a place where I could be at peace and reflect on the many ups and downs we experienced over the years.  It was a bog dream but I was persistent.

It appears that this dream is on the verge of coming true.  Nearly a year of financial management, hard work, and perseverance is very close to paying off.  Even at 51 years old I needed to dream.  I needed to have a goal bigger than the every day grind that had become my life.

So Samantha, I want you to always have a dream.  Make sure it is big and nearly impossible.  Make it bigger than anything else in the word around you.  Most importantly, make sure you enjoy the ride to get to your dream.  Even if the goal doesn't exactly happen, you will learn so much along the way.  

But one day, maybe if everything lines up just right, your dream will come true.  If it does, your life will become more fulfilling than you ever imagined possible.  Dare to dream.  Never lose sight of your dreams.  And never let anyone step on your dreams.  Be the brave person that I know you to be, and I promise you that dreams will come true.

Love.  Dad

Servant Leadership

This week our company welcomed a new Operations Manager to the fold.  JB has an extensive military and manufacturing background, which should fit very well as we continue forward. 

As with any new person, I was mostly open-minded while slightly apprehensive.  Fortunately he seems like a good guy with a willingness to learn what we are all about.  As we were having an early conversation, I was talking about how I would be cooking on the grill for our employees the following week.  He liked the idea and put it into a term that I hadn't used before, "servant leadership".

Today we had an ice cream truck come and serve Italian ice, ice cream, and gelatos.  While the employees were being served, I greeted each one and thanked them for working hard and working safely.  I took the opportunity to talk with employees that I scarcely know, and joke with those I do.  With each handshake and fist bump it helped to relieve the stresses we have endured during and after the pandemic.

While chatting with the employees I couldn't help but think about that term over and over again.  Servant leadership.  Nothing that I do is more important in my job than serving the others that work there.  I am there if they have concerns, or need an injury tended to, or need advice.  

Lately we have experienced difficulties with Tyler's living situation.  There were times where emotions were easily able to take over and make decision-making more challenging.  It would have been easy to allow anger and frustration speak for me, but I needed to think about what was best for Tyler.  I needed to be a servant leader to him.  What is best for him?  How do I improve his situation in the short and long term?  What would HE want me to do?  As it turns out (in a story to be told later), Tyler has been able to begin recovering from the difficulties because this approach was taken.

The last few days I ran into an old friend DC who was doing some work in our place.  DC is used often in his line of work because we know he does an honest job, and is very good to work with.  He returns calls, deals with customers politely, and puts pride into what he does.  We had a nice conversation catching up, which was a stark reminder that we all deal with sets of challenges that most people never see below the surface.  And yet, he is treats people right.  He is a gentleman and a professional in every sense of the word.  He obviously understands servant leadership.

Another work friend I have is SR.  She is an executive assistant who takes care of the people around her.  I am not an executive, but she doesn't care.  If I need her help I know she is there for me.  But even more importantly, she is always there to encourage, appreciate, and comfort me whenever I need it.  Its not unusual for her to send me a short e-mail telling me how much she appreciates the job I do.  And it always seems to come at just the right time.

All of these people and my conversation with JB reminded me how important servant leadership is.  It puts the other person first.  It builds the other person and makes them better.  It lifts our world just a little bit.

We need to remember as we serve our special needs loved ones, families, friends, and strangers, that to be leaders we should reserve ourselves to be servant leaders.  We should teach others how to practice servant leadership.  It will truly help this world to be a better plaee.

Be well and God bless.    Tom