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 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




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


Tuesday, December 28, 2021

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

Sunday, December 12, 2021

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





Monday, December 6, 2021

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!!