A Message from Samantha

Today Tyler's sister Samantha would like to write a blog entry.  As an 8-year-old this will be her first-ever foray into the world of public writing.  I told her that she should write what its like to have Tyler as her big brother....and how she feels about him:

hi my name is Samantha as Tylers sister I feel a little sad because I wanted to do many regular things with him but in the house I had to hide from him if he was in a bad mood and if he was where I was I would have to hide or move fast and I was very sad when he would throw one of his dvd player but dad would try to give him a stuffed animal before he would throw a dvd player on to the wall but I am happy that I have a big brother

I think there is a lot to learn by what she typed here.  One of her most vivid memories of him is needing to keep a safe distance when he would get upset.  She remembers all of the times he would slam something with his portable DVD players to convey his frustrations.  It wasn't easy to be Tyler's little sister.  But even despite all of that, she is sad that she can't do more "regular things" with him, and she ends by expressing that she is happy to have a big brother.

Other than forgetting that at some point you have to end a sentence with a period (lol), I thought she did a nice job.  She asked me if people all over the world would be able to read her first ever blog entry!  Absolutely!

Fortunately I believe Sam will continue to adapt to the life changes she has experienced.  She is doing well in school, just completed her participation in a competitive swim club, and she is sporting colorful new braces so that her teeth will become beautiful as she gets older. As with any 8-year-old she has growing pains, but overall she is a good girl with a bright future.  

I think if her big brother knew all of the wonderful things about her he would be very proud to have her as his little sister.

Be well and God bless.   Tom

Beliefs

One of the most difficult struggles for me is understanding why Tyler has been brought into this world to experience the hardships that he does.  He will never know what its like to fall in love, own a house, have children, or hold a job.  In fact, most of what he know is an inner turmoil that mixes with fear and uncertainty.  He isn't able to talk,or read, or understand much of what happens around him.  After all, we probably only get ONE life here on earth, so why is his laid in ruin by autism?  And lets not stop there, but to ask why are children brought into this world in oppressed countries only to suffer and die from famine or disease?  Why are so many children lost to child slavery?  I struggle with this terribly.

Its hard to figure out where my hopes end and where true belief begins.  I want to believe that when Tyler passes from this life he will be fully restored in heaven.  I want to believe that he will be honored and respected, as will all of the children who suffered in this mortal life.  I want to believe that he will inherit a throne of gold and we will spend of all our eternity taking walks together and sharing the stories we hadn't gotten to share on earth.  

Is this what will really happen or is this simply something I reassure myself of so that I can sleep at night?  I know a guy who's dog died and now he believes his spirit visits him at night!  Now I'm pretty sure old fido is doing no better than to rot in the back yard somewhere, but thinking this makes him believe that the dog hasn't truly left him.  As long as the "ghost" is hanging around, he isn't really completely gone.  I see it as denial more than anything.  

Its not that I don't want to be a strong person with strong faith.  But I have experienced many years of harsh reality which makes me skeptical of my own beliefs.  It blurs the lines between faith and fantasy.

So what is the answer?  I suppose we won't know until we get there.  Tyler and all of our children deserve to inherit the earth.  They deserve to be kings and queens for all of the trials they have endured.  I wish it to be so.

Be well and God bless.    Tom

Reaching 55,000 Views

I am honored to report that today "My Walk With Tyler" has reached 55,000 views.  What has been even more of an honor is how it has allowed me to share Tyler's story with so many people, often people that I did not previously know.

Tyler is a unique and wonderful individual.  I would never claim to understand WHY any of us are placed on this earth, much less a young man who has had to overcome all of the things he has been faced with it.  But I do know that while he has been here he has inspired other people.  He has enriched the lives of many people.  He has taught important lessons to all of those that he has touched.

He has shown me the best of who I am, and sometimes the worst, but to never simply settle for either one.  I must always strive to think about my effect on other people, and to cherish and protect the feelings of those around me.  I must remember that I am my brother's keeper.  At work when I teach employees about safety, I explain to them how important it is to protect their health and the health of those around them.  I talk about how if every one of us looks out for the person beside them, we would all be safer and well taken care of. 

He has shown me that I don't need a fancy house, or a fast car, or fancy clothes.  I don't need 1000 Facebook friends.  I need the love of my family and a few close friends.  I need to know that we are all loved, respected, and secure. 

He has shown me so much about be courageous.  That courage is about facing the unknown with confidence.  Courage is about beating the odds and never looking back.  Courage is moving forward even when you fall down.  Maybe the greatest example of courage that Tyler has taught me is how to remain smiling, even when things are hard.

It also blows me away how far and wide his story has reached.  I have had the opportunity to travel much of the US and somehow his story comes up everywhere I go.  This blog has reached many, many countries on nearly every continent. 

Tyler is a gift.  He is a gift that I am so proud to have shared 55,000 times to people all over the world.  I believe that he has changed people's lives.  For that he will someday inherit a throne of gold.

Be well and God bless.    Tom

The Heartbreak of Aggression

I met an extremely nice couple yesterday, and after talking with them a while I came to realize that they too have a child with special needs.  I'm not sure whether there are so many special needs parents out there that I just can't help but to run into them, or if somehow it is planned for me to just be in the right place at the right time.  Either way I'm very blessed to meet so many people that share similar stories.

Unfortunately that means we also share some of the same heartbreaks.  In this case we shared stories of how aggression can systematically pull a parent to pieces.  After all, we love our children....we want them to be happy.  And we also want them to love us in return.  And yet so often, with children on the autism spectrum especially, it doesn't work out the way we hope that it will.  Our children have difficulty expressing emotions and affection can be extremely hard to come by.  On the flip side, aggression can come from an inner turmoil, chemical imbalance, seasonal change, seizure activity, communication difficulty, and so many more other factors that we don't understand WHY it happens.

Parents who have experienced this (or children having the same issues with parents being stricken with dementia) receive lots and lots of well-meaning advice.  Don't take it personally they say.  You just need to put your foot down with him they say.  You need to stop spoiling her they say.  People will even suggest being aggressive in return to somehow teach them a lesson.  Sadly, we already feel helpless and inadequate and while these suggestions may come from a place of good intentions, they are the same as telling us we aren't doing everything we should do.  What they don't understand is that we spend our time either dealing with aggression, or waiting with terrible anxiety for the next violent outburst.

I watched my wife have her feelings slowly pulled apart when Tyler would become aggressive with her.  Nobody in the world could ever love him as much as she does, and yet over and over she would feel he rejected her.  He would pinch her, hit her forearms until they would bruise, kick her shins, and scratch her.  While probably not a single strike was enough to physically break a bone, each one would shatter a piece of her heart.  And while I rarely ever had any aggression pointed in my direction, when her heart broke mine did too.  My heart actually broke for them both.  My wife deserved so much more, and my son deserved the capacity to give more.  

Today because of his living situation, some medicine adjustments, and some maturity, Tyler has a lower level of aggression.  It is not gone, nor I doubt will it ever be, but he does not feel that urge as often.  For a long time now Robin has been able to spend a few minutes with him at church, or an hour at a restaurant, and enjoy his company.  With each smile, laugh, kiss, and hug, there is a small bit of healing. It will never undo what the many years of hardship have done, but every good interaction makes the bad times seem much further in the past.  

I wish I had some fancy words of advice about parenting through aggression, but I can offer very little.  I can say that I've been there and that I understand.  But I can also say that there is always hope and we cannot forget that.  On one hand we cannot allow ourselves to be victims or punching bags, and on the other hand we understand that we are not the only victims in the situation because our children do not want this either.  We do have to strive to do everything we can to understand it, to utilize therapies and medicines, to protect ourselves, and to seek all of the help we can get our hands on.  We cannot simply treat it as a "fact of life", but rather it should be treated as a fire that must be contained.

Be well and God bless.    Tom 

The Right Time

Probably one of the most frequent questions that I get from caregivers is "how did you know it was the right time to place Tyler into a residential home?".  

The first thing to understand is that I believe that declaring the "right time" is a fools paradise.  There really is no such thing.  I don't believe there is a right time to get married, or have children, or change careers, or put a pet to sleep, or place a loved one in someone else's care.  I believe we make sensible decisions and then we do our best to make them work out the way we hope for.

In Tyler's case, as it so often is, it wasn't about one single thing.  It was a totality of things.  It was Tyler seeming to be unhappy and discontented.  It was about our daughter getting more resentful toward having to live her life under special circumstances.  It was about our caseworker sensing where we were in our lives and shining a bright light onto it.  And it was about things falling together at the right time.  

My very good friend, author, and artist, Tom Newnam, is currently writing a book that centers around the mentality that we all need to quiet our thinking and allow positive forces to take over in our lives.  Essentially we need to listen and see the signs around us instead of trying to force our will onto everything we do.  It sounds like the thinking of an old hippy or The Big Lebowski, but there truly is an inner peace that can be found by flowing with the world as opposed to swimming against the current.

Our situation became more and more clear as Tyler reached his early 20's.  Despite my denial, I knew in my heart that being out of school was making him more discontented.  I knew Sam was struggling with trying to grow up with a severely autistic brother.  I was continually facing my own health issues.  Fortunately we also had a case manager who encouraged me to open up about all of these feelings.  Then, we let it all go.  

So back to the main question....how did I decide it was the right time.  The answer is that I didn't decide.  Instead, I trusted the instincts I was feeling.  I listened to the sounds playing around me.  I opened my mind and my eyes.

Make the decision to listen to your inner thoughts and feelings.  Walk your journey with your eyes open and don't miss the way the world is breathing around you.  When you do this, "the right time" will simply come to you, and you will have peace of mind within it.

Be well and God bless.    Tom

Wonderful Moments

As a special needs parent I have spent most of my days and nights wishing for peace and comfort.  Perhaps an even more accurate description is to say that I have wished that the winds of bad fortune would shift away from us, harmlessly out to sea.  It seems a never-ending odyssey; either the winds are raging and it takes every ounce of strength to hang on, or the winds are calm and time is spent boarding up for the next storm.  

But amidst all of the turbulence and uncertainty there can be the sweetest and most beautiful of moments.  No matter how rare these moments are, they remind us that we have a very genuine and profound purpose in this life, which is to take care of another person.  Its very easy for us to lose track of that fact I suppose....that we are being given the opportunity to protect and comfort another human being.  

Sunday morning held one such moment for me.  As I have written about in the past, the relationship between Tyler and his sister Sam has rarely been a happy one.  Unfortunately for Sam, Tyler has always had aggression toward small children.  It almost appears that he is afraid of them or is uncomfortable with them because they are small and he doesn't understand them.  Samantha has experienced this reaction toward her ever since she could remember, and it makes her very sad.  We can try explaining it until we are blue in the face, but she still cannot understand why "her brother doesn't like her" as she puts it.  I can imagine that this kind of rejection can be confusing and difficult, especially for a girl as sensitive as Samantha is.

One of the goals for all of us is to somewhat repair the relationship between Tyler and Sam.  Or at least create some form of bridge to allow them to become even a little bit closer.  We have had Tyler buy Sam a few gifts for her, like replacing her IPAD when the screen cracked.  Granted, Tyler had no idea that he bought it, or even what an IPAD is, but having Sam receive it from him made a huge difference to her. 

Another more profound effort has come at church.  As the ending video is being played, the family slips to the back where Tyler is sitting and gets to get hugs and kisses and some very valuable face time with him.  Some days he wants it to be short and sweet, and other days he wants to linger and visit a bit.  For quite some time Sam has not wanted to try to hug Tyler.  She wants to, but she has the fear that he will strike out and do something to upset her.  We would bring them together in a "group hug" basically meaning I would embrace both kids at the same time so Sam would feel protected.  Over the last month Sam has decided that she wants to try and do it on her own.  The results have melted our hearts.  He smiles and wraps his arms around her for the same hug that he gives to everyone else.  You can tell that this means the absolute world to Sam.  

This may be one of the most beautiful pictures I have ever seen.  All she has ever hoped for with Tyler is that he be happy and safe.  She wants to be part of that happy world that she wants him to live in.  She feels strongly for him and she simply wants him to understand that she loves him.  She wants him to understand that she accepts him and loves him as her big brother, for exactly who he is.  In this brief moment she gets to do exactly that.

These moments, my friends, are what we truly live for.  There is no denying that the world is incredibly challenging, and for those of us caretaking for a special needs person, it can seem overwhelming, BUT we cannot ever forget that there is always a light that shines its way through that darkness to remind us that love is reason we do what we do.  

Be well and God Bless.    Tom 

New Year Message

Happy New Year!

We all probably have hopes for the new year.  We want it to be better than the old one, healthy, and free from stresses and trials.  We probably think about losing weight, getting that raise, or improving our financial well-being.  All of these things are wonderful things.

I started 2017 with the optimism that every new year brings.  But like every year, nothing is predictable.  The first half went pretty smoothly right up until I went on vacation.  While visiting Disney World with my lovely wife, beautiful daughter, and amazing inlaws, I felt an uneasy feeling in the pit of my stomach.  I even had a dream that I was fired from my job of 13 years.  Sure enough, the day I returned from vacation I received a call from the Vice President and the CEO of the company that they wanted me to move to the corporate office to assume a more substantial position.  I actually considered it until I tried to negotiate and realized I would not receive a single penny of additional compensation for relocating.  I immediately decided it was time to look out for the good of myself and my family.  

It was a fork in the road.  I absolutely felt as though I could fold up the tent and go home.  I gave myself excuses why I could give up and let everyone feel sorry for me.  After all, who could come back from so much adversity PLUS losing a job of well over a decade?

I decided to dig in and fight.  I wanted to believe that I was more valuable than my old company gave me credit for.  I needed to fight for my wife, my daughter, and my home.  Those 13 years could either be mourned, or I could fight for what they helped me build.  Fight I would.  I put my energy into looking out for what we needed as a family.  

My new company came along, and they seemed to need me as much as I needed them.  So I ended the year with a group who wants to invest in me as an employee and a person.  

The lesson I learned for 2017 is that no matter how much we want to control the course of our lives, we are fooling ourselves to believe that we can control everything.  2108 will bring the highs and lows that every other year brings.  We will have times of feeling incredibly blessed, and times that we wonder who we pissed off that we are being treated so badly.  BUT, that is NOT the point.  The lesson here is that everything hinges on HOW WE RESPOND!  Do we fight?  Do we take the lead stare down the adversity?

If you want to have a resolution....forget "that 2018 will be better" and all that stuff.  Make your resolution that you will stare adversity right in the face and refuse to back down.  Refuse to quit regardless of what comes your way.  Refuse to lose your sense of self and your sense of joy no matter what is thrown at you.  Remember that you have this life, and ONLY this life, and to allow nothing to steal your happiness away.

Be well and have a great 2018.   Tom