Wednesday, September 28, 2016

Its a Mad Mad Mad Mad Movement

Hello to everyone!

You have heard me say on this blog, time and again, that its important to have an open heart, mind, and attitude every day.  Its equally important to listen to what is happening around you because you might miss someone or something very important.

I enjoy people who lead with their heart.  I believe this is a very special quality that is much too rare.  

Last year I was in Canada for work and I happened to meet a gentlemen by the name of Chris Giles.  Mr. Giles immediately made an impression on me as he was very professional and yet very real and interesting to talk to.  By pure happenstance he stopped by during my visit this week.  Again we all had a good conversation and he told us a great story about how he participated in a "reality show" which gave real second chance opportunities to people who messed up in life and needed a chance to make good.  On youtube it is "Redemption Inc" episode 9 which features Mr. Giles and his attempt to make a difference for one young man.

After Mr. Giles left I googled him and his MAD MOVEMENT (Make A Difference).  You can find him at:

I invite you to visit the website and enjoy the information and the stories there and become involved in any way you can.  

Perhaps most importantly I invite all of you to join the message behind the Mad Movement and in many ways this blog:  Do whatever you can, big or small, to lift someone up.  Bring hope to someone who has lost hope.  Guide someone who is lost.  Love someone who needs love.  Forgive someone who feels they cannot be forgiven.  Making a difference does not have to be a huge act, but rather it can be many small heartfelt ones.

Its a mad mad mad mad world but there is always room for a madmovement,

Be well and God Bless.


Thursday, September 22, 2016

Question on Aggression

The Question:  When and how did Tyler's aggression start?

We first noticed that Tyler could be aggressive at a fairly young age.  I would say he was perhaps 2.  

There is a lot of truth that hindsight is indeed 20/20.  It is easy to look back now that 20 years has passed and make judgments based on what we know now.  However, we made mistakes where his behavior was concerned.

Ty showed some self-injurious behaviors when we was a toddler.  When becoming upset or frustrated he would find a hard surface and smack his head against it.  If the surface wasn't hard enough he wouldn't be satisfied and find something harder to hit.  We think he liked to feel the reverberation the hard surface gave him.  This makes sense because nearly all of his aggression is not about hurting anything but rather feeling the rebound effects.

When the aggression first started it was an openhanded slap usually to my wife's thigh.  he liked the sound it made, the sting, and the sound of my wife saying "ow".  He would even mimic her saying it.  The intent always seemed to be for him to hear and feel a reaction and not to hurt her per se.  I think if we would have come up with a good plan right away we could have contained future behaviors better than we did.  My wife, who is passive by nature, remained so.  My mistake was constantly trying to play buffer between the two.  Our actions inadvertently made him believe I was the strong person to be obeyed and she was the "weaker" person that was to be protected.  Once that was established his behavior was deeply rooted in these beliefs.  That said, we were just doing the best we knew how to do twenty years ago.

So if I had the benefit of hindsight, we would have established more of a 1A and 1B strength to Tyler rather than allowing him to rely on one or the other for certain things.  

Be well and God bless.   Tom

Wednesday, September 21, 2016

Submit Questions

I would like to invite everyone to use the comment section to ask a question if you have one. I certainly don't mind, but rather, I think its important to be open and honest about any aspect of our journey with Tyler.  Please feel free to be open with your questions, and I will be happy to answer them in kind.

One reader has asked me how I feel to actually see him now in person. 

Its a mixture of emotions for me.  The overriding thing I feel is joy to see him.  Each time I see him he is smiling and loud and happy to see me, so this immediately lifts me up.  He is still a very bright light in my life and I can feel that shine the second I see him.  Our connection comes straight to the front and we seem to pick up right where we left off.  He likes to laugh with me and do his little imitations of my familiar habits.

There is an underlying sense of anxiety as well.  While I'm with him I begin to become more hypersensitive to the environment around us.  Even though there is a staffer among us, I start to feel that need to control the situation to keep him and everyone else safe.  It isn't necessary, I consciously know that, but the instinct and habit takes over.  Last time we went out to eat I immediately jumped up after the meal and guided him out of the restaurant.  I knew even as it was happening that my response was purely reflex and I need to work on not doing that anymore.

After the visit there is the quiet period of reflection.  It still feels strange to turn and leave him with someone else.  In the quiet there are some guilty feelings and a feeling of almost "mourning".  This is where we usually talk and take inventory of where things currently stand.  We point out that he looks very healthy and seems to have a very energetic and happy disposition.  This helps to keep the guilty thoughts at bay.

Overall the emotions are complex.  Another good reason to have other people that can listen to you and help you sort it out.  My goal is to just continue to slowly manage these feelings, not control them.  After all, suppressing them is no good, so it's important to allow them to happen but to have checks-and-balances in place to help cope with them.  

I look forward to other questions and will post them as I get them!

Be well and God bless.   Tom

Tuesday, September 20, 2016

Emotional Ricochet

Every one of us experience emotions that shift and bounce from situation to situation and day to day.  As a caregiver I would say the bounces are more like ricochets.  When you think of an old western shootout the ricochet comes flying without warning, from any direction, at high speeds, and you can't react to it until its already zipped past your head.  

Even without caring for Tyler on a daily basis the ricochets can happen.  Today provided one such moment.  

I had to go to the doctor for a minor item and I really wasn't overly concerned or anxious, just basically going about the process.  As it turns out there were a couple of moms, each with special needs boys.  I'm guessing that both were on the autism spectrum.  One was somewhat higher functioning from what I could tell, but very vocal.  As I listened to him and his mom in the waiting room I started to recognize Tyler and I.  He started to get wound up and louder.  Mom was doing her best to keep him somewhat subdued.  **Now....I am going to let you in on a little secret...she KNOWS she isn't going to soothe him.  She is doing it to show she feels bad if he is disrupting anyone else**.  I was impressed by her and the doctor's office because they processed him and got him back to a room quickly.  

The second mom walked her son back the hall as I was leaving the doctor's office.  He was a fairly big kid and I would say fairly limited in his development.  They bounced from side to side against the walls, he ducked into every open door, and mom was basically wrangling him back the hallway.  All the while she was trying to appear to be in control, and glance up at us to apologize for needing the time to get him through.  **Now...I am going to let you in on a second secret...she is barely holding it together at this point.  She is praying nothing gets broken, nobody gets hurt, and she gets the appointment done and gets home without anyone needing an ambulance**.  

All the while the first boy was screaming in another room.

Suddenly the bullet whizzed by my ear.  This was us.  I could FEEL that first mom's anxiety as she hoped her son didn't cause too much anxiety on anyone else.  I could imagine how terrible she was feeling each time her son screamed.  The look on the face of the second mom drilled straight into my heart.  Like a time machine I was propelled back to the anxieties of the past.  Its incredible how real those memories can be.  Its like walking through a dream and not knowing if it really is a dream.  

So tonight I simply bow my head to those who serve with dedication on the front lines, and to all of us who still hear the ricochets..

Be well and God bless.   Tom 

Wednesday, September 14, 2016

Searching For Normal

Good Evening.

I've addressed on a few occasions that finding a sense of normalcy once Tyler moved into his new home was a more difficult challenge than I had ever expected.  I wanted to offer some thoughts now that more significant time has gone by.

I still think back to the advice that my therapist offered me even before the move took place when he said that we should avoid abrupt and major changes to routine or surroundings.  At the same time, we haven't curled up in a ball either.  I think the fact that Tyler is thriving in his new surroundings has been a major contributor to our own mindset.  

For about 6 months we did little things that were difficult before.  We played mini golf, went out to eat, went to the movies, etc.  We even just took time to learn how to move around the house without worrying about space buffering and word signals as to what direction everyone was heading.  After that we took a weekend in Cincinnati to see some sites.  A bit after that we spent a week at the beach.  Now we have some holidays away from the house and visit other people's parties and gatherings.

We have even had the same philosophy concerning the house.  First we did some furniture rearranging since some of his items were moved away.  Later we painted his old room and moved my home office into that space.  Since then we have made a few minor upgrades and changes but nothing too major.

The point is, once you enter your special person into care, DO NOT underestimate the difficulty level it will have on your own system.  I thought that I would suddenly breathe deep breaths, read novels on the porch, and instantly lower my blood pressure.  Ha.  Instead I went through a period of time where I was facing blood tests that required more tests.  This along with the changes with Tyler caused me to turn to a steady diet of Lorazapam to control my anxiety.  That worked fine until I wanted to get back off of them.  At that point I experienced bounce back symptoms far worse than the original symptoms.  I was having trouble holding it together.  I'm still seemingly struggling to get 100% healthy.  This week my BP was like 140 over "holy shit" so I have to watch that again.

In all seriousness, its getting better.  But it isn't easy and I'm sure I will never be what I used to be in some ways.  However, the situation isn't what it used to be either.  I have had to learn to evaluate where I am TODAY and not how it once was.  I can't just flip a switch and suddenly be more relaxed or less anxious.  The mind and body don't work that way.

I've said this many times before, this is where faith, family, and friends are there to walk with you and help show you the way down your new path.  

Be well and God bless.  Tom

Tuesday, September 13, 2016

Drew Pearson - Special Athlete

I wanted to relay on of my favorite Tyler stories tonight.  I hope you enjoy it.

When Ty lived at home we essentially used two living rooms.  My wife and daughter would watch TV and play in the main living room, and Tyler and I would retreat to the finished basement or "man cave".  He had his Wii to play and I would watch TV and get some work done on my laptop. 

The man cave has some things in it that are special to me.  There is a certificate from my first visit to Wrigley Field, an autographed picture of Pat Summit, a birthday card for Tyler signed by Richard Petty, and a program from my first visit to Doak stadium in Tallahassee (which was also coach Jimbo Fisher's first game as well).  But of the many items that make me smile to think back on, an autograph by Drew Pearson, Cowboy's wide receiver, might be the one that gets to me the most.

Drew was to be in town with Jay Novacek doing an autograph signing.  To be completely honest I was only going to get Jay's signature on my Cowboy's helmet but they offered a good deal if you bought both so I figured "what the heck".  

I don't recall why exactly but I had Tyler with me to go get the helmet signed at the local mall.  He was in his wheelchair/stroller so that we could stand in line and I could quickly get the signatures done and get pictures with the players without an incident.  So as we approached the signing tables I wheeled Tyler over to Jay first.  He signed it, gave me a quick picture, and moved on.  He didn't strike me as a particularly chatty or uber-friendly guy but not unfriendly either.  Next I moved Tyler a bit toward Drew's table.  What happened next I won't ever forget.

Drew bounced to his feet and said "hey, bring that young man over here".  Now I'm thinking "sir you know not what you are asking for".  Then I pictured myself apologizing for my son punching a world famous football player.  So I pulled Tyler back close to us and held my breath.  For Drew this still wasn't good enough.  Before I knew it Drew slipped off his Super Bowl ring and placed it on Tyler's finger and wanted him to hold it up. I was awestruck.  To Drew it was just a quick moment in time but for me, as Ty's father, it was a gift to last me a lifetime.  What a neat guy.  In fact when the signing was over Drew engaged some kids in the parking lot in a game of catch.  That is a guy that gets it.  What is a simple gesture by one person can be much more to the person receiving it.

Be well and God bless.  Tom

Sunday, September 11, 2016

Blog Milestone

I'd like to take just a moment to thank everyone for such a great moment.  We have reached 5000 page views today.  We appear to have a good following in Canada, France, and Brazil with many other countries stopping in as well.

We appreciate you all very much.  The more you spread the blog the more we can touch people who might need a little encouragement.

In this digital age, 5000 views is not exactly going to make the viral hall-of-fame, but I couldn't be more proud to reach such a number.  However, I am hoping for just ONE.  Just ONE parent or caregiver that felt hope because of our story.  Just ONE thing I have written that helped to guide someone else.  Just ONE time when a caregiver nodded their head and realized they were not alone.  

Here is to writing for another 5000 and God willing....another ONE.

Thoughts on 9/11

On this somber anniversary I would like to break from my usual subject matter to offer my deepest sympathy to everyone effected by the horrific events 15 years ago.

Nearly all of us can vividly remember where we were on that day.  I was at work, driving a forklift, on a day just like many other days.  In the initial chaos of not knowing the scope of what was happening, my thoughts immediately turned to the safety of my family.  I remember the scattered reports coming in on a small transistor radio that felt as though the entire country was under attack.  

At the 5 year anniversary I visited ground zero.  At that time there was very little debris left and the site resembled just a massive hole.  But what I will remember more that anything else was a man standing at the fence, almost using it to bear his weight, staring off into the void.  I could feel the despair coming from him.  He had suffered a loss on that day that he was still consumed with.  To me, he symbolized the heartbreak that was being felt by thousands of people.  Though I never saw his face, I will never forget him.

These pictures were also taken on 9/11 in 2013.  My daughter had seen some remembrances in the morning and asked me to sit with her and explain why anyone would purposely hurt so many people.  She was 4.  I didn't have any good answers so I did the best I could.  It was comforting to see the firefighters paying tribute by walking on the coastline.  It reminded us that no matter what, there are still heroes watching out for us every day.   
Watching the memorials today I don't feel any closer to understanding the evil that occurred that day.  I do know that within those horrific events there are amazing stories of heroism.  The 40 crew and passengers of Flight 93 saved the lives of untold numbers of people.  Police and fire personnel rushed into buildings to save lives knowing they were likely about to lose their own.  Stranger helped stranger.

I'm discouraged to see how quickly we lost the temporary unity we discovered.  Now 15 years on we are more divided than ever. We fill the airways with hate and blame to further divide us.  This is terrifying because THIS is how any group becomes vulnerable.  We are weaker the more divided we become.

It's not the old president's fault, or the new one's fault, that's just an easy cop-out for everyone to help them rationalize.  It's OUR fault - all of us.  For allowing ourselves to become divided.  For making empathy into a sign of weakness.  For forgetting to love our neighbor regardless of who they are.

However we mark this day we need to remember that those firefighters charged up the stairs to save lives regardless of their orientation, or religion, or politics.  And so should we live as well.

Be well and God bless.  Tom

Saturday, September 10, 2016

Mexican Lunch

Good afternoon!

We had a great time having lunch with Tyler!  We met him and his staffer for Mexican food. Ty couldn't get enough of chips and salsa as usual.  He seemed very happy to see us.  He spent the hour smiling and imitating me like he would always do.  As usual he looks healthy and in a good frame of mind.  His staffer shared lots of stories about the activities Tyler has been doing and how well he is doing with all of them.  

It was great just sharing the time with him, laughing with him, and getting a few hugs and kisses.  Here are some pics.......Have a great day, be well, and God bless.  Tom

Welcome New Visitors

Welcome to those clicking this blog for the first time.

A quick explanation on the blog:  Our son Tyler is now 24-years-old and is on the autism spectrum.  We understood even before he was born that he would have profoundly special needs.  He is a beautiful and wonderful child of God.  And with the support of amazing family, friends, and community, we have maintained fulfilling lives.

As much as this blog talks about him, it's not really ABOUT him.  The blog is meant to address what life is like as a caregiver.  I try to share all of the things that are important to me so that it perhaps gives a voice to those who need it.  Being a caregiver is a devastatingly lonely occupation, but we don't believe we are supposed to be able to say that, which makes it all the more isolating.  I try to be very honest about the issues with the hopes that even one person reads it and finds themselves nodding their heads in agreement.  Because once we acknowledge that we are facing an issue, better mental health has begun.

We are amazed that this little blog has found such a nice following.  We are nearing 5000 views from many countries on 6 continents!  Antarctica has yet to check in but I'm thinking the internet lines may be frozen.  Regardless of why people come to read the blog, I hope beyond all hope that even one post resonates and touches them.  Perhaps it will help identify with a family member, or have empathy when they see someone like Tyler out in the community, or feel like they aren't alone in their struggle, or actually find advice they can use.  No matter the reason, we cherish every visitor.

So Tyler and I say "welcome!" and we encourage you to walk along with us!

Good luck and God bless.  Tom 

Friday, September 9, 2016

Outside Perspective

Good Evening!

Busy day for posting I know!  I will be on a business trip for a week so I have to make sure there is plenty of new stuff to read.  Actually, sometimes ideas seem to hit me in bunches and other days I hit the writers block wall face first.

A friend on Facebook made me think about a very important point.  All of us have a mental picture of our loved ones that slows down time.  We see them in their most vibrant and younger stage of life.  For instance, the Tyler that I think about is the happy and teenage Tyler.  I have to say I don't immediately think of him as a 24 year old man.  I'm sure any of us who are parents relate to this.

But when dealing with special needs family members, this can be an especially challenging aspect.  We love those people that we care so much for, so we want to picture them the way that makes US happy.  Its an escape of sorts that softens the effects of changes.  Where this becomes so problematic is when it turns into denial.  

When I first thought about Tyler going to a residential home I immediately pictured my "little boy" and how he still needed his parents.  He was still my CHILD and that was the image that I was holding on to.  I would imagine that those caring for parents with new special needs have the exact same issue.  We remember our parents as the caregivers and the solvers of all things, so we desperately look for indications that they can be that way again.  

We have to try very hard to put that aside, no matter how hard that is to do.  We have to think about the state of things TODAY and make our decisions based on that.  It's easier said than done for sure.  This is where an outside opinion from a doctor, friend, caseworker, or therapist can help us to keep our proper perspective.  Don't get upset at these opinions or shut off your mind because "you know what's best".  I can say that because I was stubbornly guilty of it.  Instead, listen and understand that people that are slightly removed from the situation can have a valuable vantage point.  

Once we turned off the emotion and set aside the image of how we wanted to see Tyler, he began to grow as an adult.  We trusted that by turning his care over to a staff who knew how to handle his situation, he would get what he needed for this stage of his life.  Same would go for a parent with special needs when it becomes time to turn them over to more specialized care.

Always be brave enough to ask yourself what the best level of care is for that special needs person in an objective way and follow that path.

Be well and God bless.   Tom

The Power of Attraction

Good Afternoon

His day program gave me an interesting tidbit.  They have (very smartly) continued to introduce different staff members to Tyler.  The motive being that the more people there he gets familiar with the better he will adjust to the staff as a whole.  As a result, the Director reports that Tyler has become very popular with the staff.  They stop in to see him because they just want to say hello.

It's funny to hear this for the simple fact that this is not the first time I've heard a story like this.  When Tyler attended public school, he was a popular figure with students, faculty, and staff.  When he was often either hospitalized or brought in for tests at the local hospital during his younger days, much of the staff knew him.  When we took him to doctor's offices the staff would come out to greet him and in some cases snatch him up and disappear with him to visit with more staff.  

It makes me wonder what that "it" factor is?  Why are so many people drawn to him in that way?  I mean, of course he is magnificently handsome like his Daddy and all, but what else is it?  It really is an interesting question...

I think it has a lot to do with his authenticity.  Tyler is absolutely the most genuine person you will ever know.  There is nothing fake about him.  What he feels is what you see and I believe that makes him unique.  When he smiles at you, or laughs, or hugs you, it is REAL. There is a comfort level in that.  I think most of us wish we dealt with more people who we can trust at face value.

Perhaps this is yet another lesson we can learn from our special children.  The more genuine we are the more drawn to us people will be.  The more "real" we are, the more people will trust what they see and the more they will want to be around you.  I think this is just human nature.   

Whatever the reason, Ty was blessed with this gift.  And the gift of being incredibly handsome too.

Be well and God Bless.   Tom

Tyler This Week

Good afternoon!

I am very happy to report that Tyler continues to get rave reviews about how well he is doing at the home.  His Home Manager said he is enjoying doing more chores around the house and helping to make his lunch each day.  

The house took him to see a local baseball game Wednesday night and he apparently had a nice time.  This is a great step forward as handling Tyler in potentially tight crowds can be a risky situation.  His staffer said he smiled the whole time and laughed when the canons were set off for a home run!  It does our hearts good to see him doing these activities and enjoying being an adult.

Tyler also continues to find success at his day program and with his bible study night.  We are so thankful that he is happy and healthy.

Tomorrow we get to see him for some Mexican food for lunch and I look forward to adding some pictures then!

Be well and God bless.   Tom 

Monday, September 5, 2016

Football Story

Hey Tyler.  I'm watching the first Florida State Seminole football game of the year.  It's not hard to remember when we would sit together while I watched the game, wearing our football jerseys.  

Granted, you could care less about who was winning.  The biggest kick for you was listening to me yell and holler.  While I'm living and dying with each play you would just giggle and point at me and say "Daddy's funny".  That made it fun for me and made it much easier when things didn't go our way.  You loved to shout FUMBLE! and TOUCHDOWN!  or clap loudly when I would clap.

I almost forgot a funny football related were very young....perhaps even preschool and we went to meet with your teacher.  The teacher said she asks her kids to sing a song and have the rest of the kids sing along.  She said they asked you and they couldn't tell what you were singing.  You were making a chopping motion with your right arm and humming a tune.  Whatever it was, she said, everyone sang along with you.  We couldn't help but laugh because we realized you were doing the Florida State war chant and doing the tomahawk chop!  

Tonight I'm doing the chop for us both.  You are never, ever far from my heart.

Good luck, God Bless, and GO NOLES!

Friday, September 2, 2016

Walking Forever

I was thinking a lot about Tyler today.  This happens quite a bit especially when I am traveling and spending time alone.  My thought was how I wish I could have even just one hour where we could converse as normal adults.  One hour where he could understand everything I had to say and he could express his feelings as well.  But what would I say?

First I imagine that we would take a walk together.  Just a father and son walking through the park having a conversation.

"Son first of all if you hear nothing else I want you to know how very much I love you and have always loved you.  I've never been disappointed or embarrassed with you.  In fact, it's always been the opposite, you have always made me proud.  You are more courageous than I could ever be.  I hope you know that we always did the very best we knew how to do.  Every time we made a decision it began with thinking about what would be best for you.  I know I was not a perfect dad.  I made mistakes and I only hope you can forgive me for decisions that went wrong.  I miss our walks together.  I miss those times where you laughed so hard that couldn't catch your breath.  I hope you were always happy and felt loved and respected.  Most of all I hope you are happy in your new home. We had to recognize that you were not a little boy anymore.  We had to be sure you had a secure future passed what we were capable of doing.  You didn't do anything wrong and our feelings about you did not change.  You needed more than we could give.  We became older and more tired as well. I'm sorry for that.  All we can hope for is that we made the most of our first 24 years together to give you happiness to last a lifetime.  As long as I have breath I will be here for you.  I love you"

Then I think he would tell me some of the things he never had a chance to say.  Or perhaps he would just be content to walk and to listen.  I would give anything to hear his voice and listen to how he feels.

Someday Tyler and I will walk that way together.  We will spend eternity shoulder to shoulder, all of those earthly pains and chains merely fallen away.  Our legs will never get tired.  The sun will shine and the air will be crisp and comfortable.  He will embrace me, and his Mom, and his sister and any sadness we ever experienced will be long forgotten.  We will indeed have joy in the morning.

Be well and God Bless.  Tom