Tyler is Struggling

Tyler is struggling.  

A few weeks ago his demeanor turned sour.  Right now he is basically unhappy with everything and everybody.  So much progress that had been made with healthy interactions has been lost once again.  

Obviously the worst part is that my son feels bad.  Something is wrong and I am powerless to fix it.  I have passed on a few ideas of what my be contributing to his mood, but without his ability to give us feedback, it is simply a crap shoot.  Its akin to when a baby cries and cries but every remedy you try just leads to more crying.  Only with Tyler when he is miserable he can effect those around him in the same way.  He becomes very difficult, almost defiant.  It's so sad because that is NOT who he is.  Tyler is my grinning young man.  He is reacting to something that is way off.  Is it physical?  Perhaps something like a UTI or allergies?  Is it a form of depression that he can slip into?  The truth is that we just don't know.  

What is happening is not exclusive to the special needs parent.  There are parents right now, reading this, that are watching their children struggle.  Perhaps it is a problem with addiction and their child cannot find their way out of it.  Or maybe it is dealing with depression, bi-polar, or schizophrenia.  Worse yet, perhaps there are parents dealing with a child that has been lost in one way or another.

As Tyler's parent I still feel responsible for his happiness.  I still feel that I have to figure out how to make him fit better into this world.   I have to reach out to him and make it all work out, somehow, some way.  It's my job to have those answers!  Meanwhile...my heart breaks at the reality of the situation.  I don't have superpowers any more than his caregivers do.  We are all rowing the same boat looking for an answer that we may not ever have the ability to figure out.

When Tyler struggles, I struggle.  Its a struggle to stay on task and continue to move forward with life.  Of course my brain tells me that things will turn around, and that we have a great staff, and that I need to have faith and keep moving forward.  But my heart still bleeds.  And as long as he is unhappy, I can't be happy.

And so it goes for parents who care for their children with all of our heart and soul.  We go on to work and concentrate as hard as we can, knowing a piece of us is not quite there.  We smile or laugh, and sometimes have brief moments where the sadness goes away, but it doesn't last.  We hold onto hope that the next day will hold the very answer we are looking for.  We hold faith in one hand and doubt in the other, wondering why our child is made to suffer.  We question what purpose our child's pain could possible serve.  We struggle.

For those of you joining along side of us in our struggle, we feel your pain.  We pray for you and your children.  We have to keep believing that in this world, or in the hereafter we will find peace for our children and peace for ourselves.  

The struggle doesn't last forever.  It can't.

Be well and God bless.   Tom  

The Moon Picture

One bit of feedback I frequently receive from people who read this blog is how much they like the picture of Tyler pointing to the moon.  They want to know if there is a story behind the photo.  And I suppose that there is...

Taking a vacation with Tyler certainly had its challenges.  There were always so many logistics that it made it hard to relax and truly unwind.  For Tyler, keeping him at a comfort level where HE could relax was just as much of a challenge.  Even a day at the beach was...well....no day at the beach.  Let me give you a few examples of how a family like us has to think when taking a seemingly simple trip to the beach:

• If we stay too many days he will get anxiety due to missing his things and routines
• On the ride down we can't stop at a public restroom that will be crowded (he will lash out) or dirty (he touches everything)
• We have to pack bed protectors and sheets so that if he has an accident overnight he won't ruin someone else's bedding
• All familiar toys and DVD players need to be packed, along with wall and car chargers
• Eating out in restaurants will be done early in the afternoon prior to dinner crowds
• Shopping will be done during the dinner hours to avoid the evening crowd coming in
• We know how to change a pull-up while driving on the freeway

I'm sure if I thought long enough I could come up with 20 more, but you get the idea.  It never deterred us from going, it just made us go to places that we knew we would have the best chance of success for all of us.  After all, it was important that Tyler have every opportunity to enjoy some sun on his face, and toes in the sand.  

Back to the photo....Myrtle Beach was always his favorite place other than home.  He got familiar with the condo we were using each year to the point where he recognized it and he felt a comfort level that helped everyone.  When thinking about it, it normally went pretty well and I can't think of any beach-related horror stories other than one mild jellyfish sting when he was little.  One of his most pleasurable moments came around dusk.  We would be done with dinner and a little shopping, and would come back to the room for the evening.  Traditionally we would head down to the beach, which would be absolutely empty, and just wander around.  The kids would splash in the water and explore.  Tyler liked to wade out just a little way, and look out over the horizon.  On this occasion the moon caught his eye.  He stood smiling, and over and over announced "Moon!" as though welcoming an old friend.  I snapped the photo of my boy in a truly happy and content moment.

The beach always had that effect on Tyler.  He obviously felt a comfort and a unity with it.  There was no fear, and really no threat that he would wander too far or fall into the surf.  He seemed to understand the relationship he had with the ocean, and respected it.  It was a fascinating relationship that I won't ever understand in quite that way.  I believe the sound and subtle movement are soothing for Tyler (as I understand is the case for many children on the spectrum), and I wonder what else happens in that mind as he stands there.  I'd give anything to hear what he is thinking so I can understand it.

As I've written, a very important goal to me is to someday spend my days close to the beach.  I too feel a kinship and peace with the ocean that is hard to explain.  And now that Tyler has moved away, its a place that I feel very close to him.  Its something that we shared and it may be the only place and time on this earth that we both found peace at the same time.  

Be well and God Bless.   Tom

Tribute to Pastor Dave

Recently we have learned that our Pastor has decided to continue his work in the special needs community and he will be leaving our church.  We all view this as a ministry and an extension of what he taught us every week within the church walls.

Pastor Dave and I met in an organic way, just two guys taking walks around the neighborhood.  Little did I understand that my walk with Tyler would lead us to him and his church.  Dave and I immediately discovered we had a lot in common.  We both had a passion for helping the special needs community, we both love football, and we both want a peaceful world for our children.  And like most people we have very profound differences, especially politically.  But we want the same things in life which is far more important.  Most of all, we both love Tyler and what is best for him.

Our impromptu meetings in the neighborhood turned into Dave introducing us to what would become Tyler's care agency.  My trust in him allowed me to follow his recommendations, which became the very foundation of Tyler's life today.  For this reason alone I owe him so much.

Once Tyler became established in his new home, he started attending Dave's church on a weekly basis.  Within a few months Dave asked if he could baptize Tyler.  We were happy to agree and attend the ceremony.  We immediately felt the incredible inclusion and love that the congregation has for Ty.    This lead to the girls and I attending each week, which has now evolved in my in-laws doing the same.  It has also lead to a few dozen people receiving new study bibles through Tyler's bible program.

As you see, Pastor Dave has touched our lives in more ways than we can count, and we are thankful that he will continue to be part of our lives.  But most of all, I'm proud to call him my friend.

Be well and God bless.    Tom

But Now What?

Tonight I will tackle an extremely difficult subject.

When Robin and I found out, in 1991, that Tyler was likely to have severe disabilities, we were given the option to terminate the pregnancy.  His prognosis was dire.  Fortunately there was no known danger to Robin regardless of our ultimate decision.  For her and I it was a quick decision....we would love and protect Tyler regardless of what that meant.  I've told that story and some people ask...would I make the same decision all over again?

I would.  And I would love to stick out my chest and claim I feel 100% committed to that and always have been.  That would make me a liar.  I've had doubts, and sometimes I still do.  Consider this:

We are better at keeping people alive medically than we are caring for them.  In other words, science continues to advance to make life longer, or to save more distressed babies, but we struggle to maintain the resources needed to ensure quality of life.  

And what happens when a severely disabled child is born to parents without the physical, financial, or emotional means to care for them?  Often what follows is a lack of care, and the high possibility of neglect and abuse.  And please take my word for this, there are no lines around the block to adopt special needs children. 

Is there a "natural order"?  Until perhaps the 50's, children and adults with severe disabilities had a limited life span.  Was this the way God and nature intended it to be? Have we become so obsessed with medicine that we have taken those decisions into our own hands, beyond what was intended?  This ties into my first point, that our desire to keep a heart beating has outgrown our ability to care for those souls.

On the flip side, we never truly KNOW what will happen.  Afterall, Tyler was predicted to die, or never speak or walk, but he has exceeded expectations and touched thousands of people.  He experiences love and warmth.  Without him the world would not be as bright.

My answer remains yes, I would do it all over again because for US it was the right thing to do.  That said, I would never suggest that everyone had to make the same choice.  If Robin's life were in danger and we knew Tyler was in grave peril, I may have had to make a very different decision.  I wish we lived in a world that guaranteed special needs persons had unlimited love, housing, medicine and care, but we don't live in that world.  If we did I think these decisions would be much more simple.

My hope is this: when faced with a decision like Robin and I faced, that every consideration is carefully considered.  That those parents seek help from family, ministers, doctors, and social workers to have all the fact.  I hope that selfishness gets pushed aside and every opportunity is given to that child and mother.  But no two circumstances are the same, especially when there are substantial medical issues that complicate things.  I don't believe there is a one-size-fits-all answer.  When an agonizing choice has to be made, its up to that person to have to accept it within themselves and before God.  

Be well and God bless.    Tom

So How is Tyler?

We are so thankful that so many people follow Tyler's story.  Hardly a day goes by that someone doesn't ask me about him or tell me that they are praying for him.  As I've said many times, its incredible that Tyler reaches so many people through this blog and through his Study Bible program at church.  I'm merely the hands that type his inspirational messages.

So just how is Ty-guy doing? 

We got to spend time at church with him yesterday, and then took him to his favorite pizza place for lunch.  Shout out to Marinos Pizza in York, Pa. for having a welcoming venue for us to spend some quality time with him.  One awesome thing that has happened recently is that Tyler doesn't mind if Robin sits with him during the church service.  Previously we would sit in a different area so we wouldn't disrupt his routine and possibly make him too distracted to make it the entire hour.  A few weeks ago Tyler came in and Robin sat with him just to see how that would go.  She has been sitting next to him ever since (I am running the video board so I get to watch this from afar).  This is a nice step forward for both Tyler and Robin!

We had a terrific time eating lunch with him.  He seemed to enjoy our company and lingered for quite a long time.  He ate a lot of pepperoni pizza, drank a lot of soda, and had a fair share of onion rings.  He got to do his favorite stim, running his fingers through his Mom's hair.  He also giggled at some of the crazy idiosyncrasies we have always done.  He looked very clean, healthy, and happy.  

His caregiver, Miss R, explained that he has been doing well now that we are headed toward spring.  Tyler suffers terribly from a seasonal disorder which lasts from about November first until March first.  We don't know WHY it happens exactly.  Could be the cold weather, lack of natural light, barometric pressure, or some other force that only his brain experiences.  Whatever the reason, he enters a very dark period for these 4 months.  He is generally more tired, grumpy, defensive, and unhappy.  Some years are worse than others, but that time period is about as consistent as it gets.  Judging by his demeanor yesterday, he is feeling pretty good right now.

When it comes down to it, we have to have faith that he is being watched over, even though I am not the main person doing the watching anymore.  He has an extraordinary group of caregivers and administrators who watch over him.  God watches over him and uses him to carry messages of love.  And of course, his family is always here to watch over him.  

As difficult as it is sometimes to relinquish that "control", we have learned to allow him to live in his world now.  As long as he is healthy and happy we will continue to do so.,

Be well and God bless.    Tom