Monday, April 25, 2022

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 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 far is too far.  

Monday, February 21, 2022

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

Tuesday, February 15, 2022

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.


Monday, February 14, 2022

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

Wednesday, January 26, 2022

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 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

Saturday, January 22, 2022

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