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!!




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

Saturday, November 13, 2021

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