One Thing

I often hear Pastor Dave say things during his message that instantly bring me to a blog post.  This Sunday he said (I am paraphrasing) "Let your main thing be your main thing".  I like that thought and what just a few simple words can mean.

It made me think of the old movie City Slickers when Curly said the meaning of life was just one thing...

For quite a while everyone was trying to figure out what the heck that ONE THING Curly was talking about.  What he meant was, that thing is whatever is most important to you. Like Pastor Dave said...let your main thing be your main thing.  Ask yourself what makes you happy and let that be your focus.  That isn't to say that you can't have other priorities too. We all have facets of our lives that we hold in various degrees of importance.

For me, it makes me happiest to be a person that Tyler, my family, my neighbors, and my friends can trust and rely on.  I enjoy spending time with all of them and making memories in our experiences together.  Even when I'm working, I want those relationships to be fulfilling and meaningful.  That's my one thing.

If I focus on my main thing, the small stuff won't bother me so much.  It keeps things in proper perspective and makes me feel less disorganized.  It makes little annoyances roll right off of me.  

Find your one thing....your main thing....that brings you a sense of happiness.  Keep focused on that feeling and don't give focus to the negatives.  You might be surprised how things can become more clear in your life.

Be well and God bless.....Tom

Tribute

Sadly, the majority of caregivers experience the loss of those they are caring for.  That special person may move to a care facility, some may lose all cognitive function, and many will pass away.  Regardless of the circumstances, it can be a tremendously painful end to the earthly journey with them.  

I dedicate this to all those who have experienced this heartache, and to my beloved Miller family who are facing a very difficult time.  Our love is with you always.


"Tribute"

Waking up from my bed today, I saw your picture on my wall
It was a better time, a happy time
Like looking through a window to another place
I can almost feel myself back there again

My reflection appears vaguely on the glass
Just like that picture, I am no longer the same
The image now seems a lifetime ago
You can only continue on in my memories

I go about the day like I always did
But nothing ever looks the same
Like wearing a coat made of steel
I carry the weight of a thousand yesterdays

Every step I take, you take with me
When I laugh I can feel you laughing too
When I cry your hand is on my shoulder
As I walk, you gently urge me forward

I breathe each breath as my tribute to you
Your spirit carried in my heart and soul
By living on, you live on with me
The memories stay alive and well

Before bed I see that picture once more
Like a mirage I can't touch that moment
But I can carry you to my dreams
And maybe there we can meet again

This I promise you with all my heart
We will be made whole again some day
And like that picture on the wall
We will see a better time, a happy time, for all time


This was for you J, C, B, B, H, M, K.  And of course Grandma B.  May peace, love, grace, and only good memories follow you on your journey.

Tommy  

Happy Birthday Tyler!

25 years ago today Tyler was born.  Its an incredible thing when I think about it.  

One thing I know for sure is that whether I look at a picture from when he was 5, 15, or now 25, he makes me smile.  Its the first thing that comes across me.  Its never about the hard times.  Its about how proud of him we are, and how much we love him.

I think about the hugs, the laughs, and the walks together.  For all of the ups and downs, I wouldn't trade a minute with him for all of the world.  

So, happy 25th Birthday to my beautiful and courageous son.  You have been an inspiration to me and so many other people.
We love you. 

Tyler is Sick

Its one of my biggest nightmares.  And I'd be willing to bet its one of the biggest nightmares for the majority of the caregiving community.  My non-verbal son is sick.

Tyler has a history of medical issues such as only having one kidney, seizures, bowel obstructions, and shunt blockages.  So when there is an illness, my mind immediately goes through the process of eliminating all of the worst possibilities.

Since Tyler is not verbal, he isn't able to help us diagnose what may be going on.  He will actually become more defensive when he is hurt or sick, which makes his treatment all the more difficult.  This means we have to be on our toes and pay attention to even the most subtle of physical queues.  Its not an exact science by any means, but there are a few things you can consider when it comes to how to care for someone who is non-verbal.  Here is what I evaluate:

• Is Tyler eating and drinking like normal?  When his intake slows severely or stops I consider the situation to be more urgent
• Is Tyler showing signs of pain or discomfort?  I monitor where the pain is, the severity, and how long it sticks around
• How aggressive is he?  The worse he feels the more defensive he will become
• How is Tyler's bowel output?  
• What is his overall activity level and disposition?

Since Tyler has difficulty at the doctor's office or hospital, we try to allow him to heal from common illnesses without intervention.  It is a slippery slope however.  We also don't want to wait too long and cause him to become worse or encounter complications.  

If you are a caregiver and find that this is a struggle for you too, here is what I suggest to help:

1. Know what their "baseline" is.  In other words, what is that person like when everything is fine?  How much do they eat, drink. sleep, etc.
2. Know what symptoms would cause an immediate call for care
3. Have a plan for caring for more common illness, flu, etc
4. Have a plan for 2nd level of care from urgent care, specialists, etc.
5. When new symptoms or confusing signals present themselves, consult your doctor to begin the care process
6. Above all else, try to use sound judgement and take a team approach.  Let the symptoms be your guide

With any luck, Tyler simply has a stomach bug (like practically every one else right now) and will be back on his feet soon.  For now....we watch and wait.....

Be well and God bless.   Tom

The Animal

   

Good Evening.  What a beautiful weekend we had here in PA to be outside and enjoy our friends and neighbors.

This past week a famous wrestler from the 80's passed away.  His name was George "The Animal" Steele.  For those of you who have no idea who The Animal was, he was a unique man.  He appeared to have the IQ of a small child, and the body hair of a Sasquatch.  His tongue was green, and his favorite snack was chewing on the corner turnbuckle.  He often wrestled as a "bad guy" but occasionally found himself cheered by the crowd.  

To look at him you would realize the best thing to do is put your head down and walk on the other side of the street.  Many of us as kids would go to wrestling events and be glad there was a guardrail separating us from a crazy monster.

That man's real name was Jim Myers.  Jim earned a degree in science from Michigan State, and a masters degree from Central Michigan.  He became a teacher, wrestling coach, and football coach and was later named to the Michigan Coaches Hall of Fame.  Mr. Myers was also a devoted Christian, husband, and father.  He was known as a kind man outside of the ring who loved to mentor and teach.

Like "The Animal", so many of us have been judged by what we look like on the outside.  I know I have.  And I know it has happened to Tyler.  Some people may have looked at Tyler's outward appearance, or heard his noises, and decided things about him without looking inside his heart.  Its a shame because they would be missing one of the most joyous people they could ever know.  They could never know how such a big heart could come in such a small outer package.

It's a lesson that Tyler can teach us all; that outside appearances are no way to judge the heart of a person.  Outside appearances do not measure a person's warmth, sense of humor, or intelligence.  We cannot experience their true gifts unless we take the time to know what is on the inside.  

Let's treat each other well not for what is on the outside, but the beauty that is within.

Be well and God bless.    Tom

Red Lion Zion

If there is anyone in our local York area that feel a void in their spiritual life and would like to fill that void in a welcoming and caring environment, I suggest joining us at Red Lion Zion Methodist Church on 1155 Felton Road for the 11:15am Contemporary Service.

Pastor Dave Kominsky is immediately easy to relate to.  His messages are about how the scripture is relevant to everything we do in our own lives.  There is no air that he is speaking AT his congregation, but rather he is living it with all of us.  I keep hearing he is also a good drummer but I've yet to see that for myself.

The music is very good as well.  It's fun and uplifting and it makes you feel glad to be a part of it.  

All of the other members of the congregation are fantastic as well.  Not even for one minute did I feel like an outsider.  Tyler is certainly a cherished member of the church as well, and you can tell he feels this warmth around him.

I was in a place in my own life where I needed a change in my own spiritual perspective. To be honest, I had lost my perspective completely.  What I found at Red Lion Zion was the ability to go back to basics.  I found a place that was about the fellowship and a message that I could relate to.  And I felt like I had support that I could offer to others.  I felt at home there.

Feel free to contact me if you would like to join my family and visit the church for a Sunday. Perhaps this could be a new beginning for you too.

Be well and God bless.   Tom

Yesterday's Meeting

Good Evening!

We had meeting yesterday for Tyler with his mental health team.  It was an evaluation of sorts to see if there are any issues that a behavior specialist can help to address.  As it turned out there really wasn't anything they need to do at this time, so we will simply continue things along the current path.

Meetings are a part of life for a caregiver.  Sometimes I walk in with no idea what the heck I'm going in to talk about.  Tyler's life has been documented and re-documented so often I think I know his case history by heart.  But....that's normally how each meeting kicks off. "So give me the background on Tyler".  I admit it, I have an internal eye roll I save for such occasions.  But I do understand that each new part of the team wants to get a firsthand sense of who Tyler is and what makes him tick.  I look at it as our opportunity to make Tyler's voice heard from the very start.  

Even meetings that may not seem to be hitting the mark can serve a tremendous purpose. This one was an opportunity to have Ty, a staffer, and his House Manager all around the same table with me and his new behavior counselor.  I gave a summary of Tyler's background, and the house updated the room on Tyler's current goings-on.  We talked at length about the incident from a few weeks ago where Tyler became immensely uncomfortable with a fill-in staffer.  

We left the meeting with a decision to just monitor things and continue moving forward.  But the real value was sitting together and comparing notes.  When we have a meeting where everyone agrees on where we have been and where we are going, its a tremendous plus.  

For Tyler's part he was in a very good mood.  During the meeting he chattered with me with his typical "happy words".  It was a fun little Dad-Son reunion.  But in typical fashion, when the meeting was over, he was ready to hit the door.  He gave me a quick hug and kiss, and out the door he went.

My feelings are always mixed.  I'm proud of him, I love to see him happily go on his way, and I feel a little sad that I'm not his main man anymore like I used to be.  

Be well and God bless.    Tom

Never Alone

Never Alone

Its not when things have gotten nuts
And its not when things are loud
Its not when I'm against the wall
And its not lost in a crowd

Its not the times the chips are down
And I have to bring my best
Or when the world seems on the line
And our balance is distressed

Its the dark and quiet of the night
A cold and piercing dread
An unforgiving emptiness
Which echoes in my head

The lonely drive on darkened streets
With only me to listen to
The quiet house with others gone
And nothing left to do

I remember then, I'm not alone
Because others walk with me
Even if they're miles away
Or some place I can't see

Tyler's heart has never left me
My friends would never hide
My faith and church embrace my soul
They would never leave my side

A quiet heart I close my eyes
I feel the love is there
Its a call or memory away
And its a silent time of prayer

I realize now I'm not alone
nor ever again will be
When stress and noise has gone away 
Means they quietly walk with me

Taking Moderation in Moderation

Good Evening.

We did get to see Tyler on Sunday at church.  We didn't want to invade on his routine, so I slid over to sit beside him for the last 5 minutes of the service.  He seemed a bit less overwhelmed with this arrangement.  He smiled a bit and hugged me on the way out, but I could tell that he was more worried about his routine than he was about his dear old Dad.  It was still great to see him and hopefully this leads to more comfortable meetings there down the road.

Meanwhile I had a conversation with fellow special needs parent, Tonya, about the week each of us had.  We both had the same reaction, a cautiously optimistic outlook on recent events.  

A challenge I have as a caregiver is to keep my emotional reactions on a moderate plain. I'm insistent on giving my emotions a voice and trying to process them and experience them as events happen.  What I have not yet become good at is how to keep the highs and lows from getting too far from center.  My biggest issue is with the low periods.  

When Tyler is having things run pretty smoothly, I tend to have the attitude that things are one day at a time, and one hurdle at a time.  I will enjoy a good day today and we will see what tomorrow brings.  I don't allow myself to think too far ahead because who knows when the other shoe will drop.  Its really pessimism with lipstick and a fancy hat.  When things are running poorly I think its the end of the world and I have to obsess over it until I turn it around.  

This is what I believe to be one of the most difficult things about caregiving.  I feel like either a shoe has just dropped on my head or I'm waiting on the next one to.  That makes it hard to be comfortable even after a good day!  

So the question is, how do we learn from this?  How do we moderate our emotions so that the highs and lows do not stray to far from center?  I think this is where we need our outside influences for perspective.  Our regular visits to church can help to keep us spiritually grounded.  Our friends, families, and hobbies can help keep our emotions in check. Continued reading and research about our problems can help us to feel more informed. Support groups in person or on-line can give us emotional support.

One of my favorite lines by Billy Joel goes...."the good old days weren't always good and tomorrow ain't as bad as it seems".  I think he is telling us that those extreme feelings are more in our mind than in reality.  

Perhaps all we can do is remind ourselves that moderation is the key to our emotions, and to reach out and use those tools when we go to extremes....

Be well and God bless.  Tom

Team Tyler Hall of Fame - Gina

There are people that have come into Tyler's life, and all of our lives, who have made very special contributions.  In a previous "induction" I selected my in-laws, Pam and Andy for their unconditional love and support.  There are other family members who will be highlighted but I want to shift gears just slightly.

My next selection for the Team Tyler Hall of Fame is Gina K.  Gina owns the hair salon where all of us have gone for about 10 years.  On the surface this might seem like an odd choice, but if you saw Tyler with her it would all make sense.

Ten years ago we were looking for a new place for the family to get our hair cut.  Gina was recommended to me by a dear friend.  This friend felt that Tyler and I would especially like Gina because she is fun and outspoken and a little bit crazy.  So we gave it a shot.  For the longest time I would stand beside Tyler while he was getting his cut, giving her verbal instructions, and him verbal reassurances.  I'd stay close by and watch his body language in case he got aggressive.  In those early days he would give out some moderate kicks and swats to let everyone know that a haircut can be anxiety inducing to him.  

As time continued on, it was clear to me that Gina had that "it" quality that all special needs parents dream of.  That "it" person is the one who rises above the aggressive behavior and has that ability to gain their trust.  To my knowledge Gina has no formal training or extensive experience with special needs.  She simply leads with her heart, and her guts, and she trusts her instincts.  Its a natural ability that is a wonderful thing.  

For a long time now, Tyler becomes excited when he knows he is getting his haircut.  He marches straight into the door and straight to Gina's chair.  He even turns to his staffer and waives goodbye to them so they will go sit across the room.  He is saying "this is MY time with Gina".  Gina always tries to make him talk, laugh, and act a little goofy, which are all things that endear him to people.  His staffer has him pay for his haircut, he gives Gina her customary bear hug, and away they go until next time.  He sees Gina as a beloved friend.

Gina makes Tyler light up, and she has taught him to enjoy a personal care process.  She has helped teach him a little about trusting other people to handle him.  She took the time and the attention to win his heart.  That makes her so very special to all of us.

Be well and God bless.    Tom  

13 Families

Sometimes I see something to write about, and I wonder if it's relevant to our journey as caregivers.  As I think it through, I realize that nearly everything we come across in our day can teach us something, negative or positive.  

I watched a documentary called "13 Families".  This film visits the loved ones of the 13 precious souls lost at Columbine High School.  Its not a film about the details of the shooting, nor is it about the role of guns or mental health or even bullying.  It's a film about how each family remembered the ones they lost, and how each family learned to live again. As you might suspect, the aftermath affected each family very differently, but also very much the same in many ways.  One thing that they have found comfort in is each other.  

After I sat back and thought about the documentary for a while, I began to understand why it is so important, and yes, relevant even to me as Tyler's Dad.  

I thought about the father who decided that he would try in his own ways to prevent this kind of tragedy from ever happening to another family.   There was the mother who volunteered her time to help one of the survivors by taking her to therapy.  And there were also just stories of families finding simple ways to find peace and reclaim their lives.  Some found immediate ways to rebuild, while others took many years to do so.  I thought to myself, if THESE families can live beyond their struggles and not give up, I can too.  If they can find ways to reach out to other families, to be an inspiration, and to help others move forward, I can too.  All of us can.

Be well and God bless.   Tom

Living the Lie?

Dear Special Needs Parents,

Stop me when you've said this......ready........

"I'm the only one who can take care of my child"

"Nobody else can take care of my child like I can"

"My child would be lost without me"

I said it.  In fact, I LIVED it.  Every time Tyler looked at me I told myself he would implode without me watching his every move.  I thought nobody else on earth could understand his queues other than me.  I expected the phone to ring an hour after we took him to his home that day with someone screaming in the background "COME GET HIM!!!!".

The phone didn't ring.  That's not to say it went smoothly, in fact it was the opposite.  In that moment and for about 24 hours he did implode in a way.  He also did some demolition work on the house.  Every bad, ugly reaction I was afraid of  happening DID happen.  But the next day it got 1% better.  And the next did the same.  And the next.  And the next.  He learned that he was "ok" and that new ways of doing things were not so bad.  We had conditioned him one specific way for 25 years. They were simply wiping that slate clean and starting over the way an adult like him should be living.  

My friend Pete asked me today if I thought we had "held him back".  With the benefit of hindsight I had to say "yes".  By doing things the best way WE knew how to, we were having him live the same day over and over again basically.  I could not have seen that without seeing his progress now.

Tyler needed a stroller/wheelchair everywhere we took him so we could control his uneven gait and uneven behavior.  We were convinced it was necessary.  He now walks into stores and church and everywhere else without it.  The agency has never used it.  Tyler now loves to help do housework around the house in ways we could not give him the chance to do. With us we could not handle him at the dentist, now he goes and does a cleaning with no problem.

Of course its hard to admit.  But I couldn't be happier than to be so wrong.  This is Tyler's life, and not mine.  He has every right to live his life in an independent way.  He became an adult and was no longer a child and we had to give him the right to live that way.

Do NOT tell yourself that lie...please.  If you believe that only you can care for that child or that person, you are robbing them of the ability to live their lives.  That statement is born from fear.  Its the justification for never letting go.  It's a statement that is not about that person, but about you.  I know that sounds harsh and direct but having the correct frame of mind for these decisions could make a tremendous difference in your quality of life, and theirs.

Be well and God bless.    Tom

Role Players

The New England Patriots have arguably the best quarterback in NFL history in Tom Brady. They also fill their roster with players that are not superstars in the classic sense, but they are wonderful role players who do their assigned task very well.  Their wide receiver, Julian Edelman, was selected 232nd in the NFL draft after not even being invited to the NFL combine.  He had been a three year starter at quarterback in college but the Patriots saw him in different roles.

Edelman decided that in order to continue his career and help his team, he would do whatever role he had to.  He accepted that he didn't have to be the star quarterback in order to make a huge impact on his team.  He trusted that there was a place for him where he could shine in his own way.

There have been so many role players in Tyler's life that have created his successful team. These are people who do their specific jobs very well, and with dedication.  It could be a bus driver who always smiled and made Tyler feel comfortable.  It was the nurse who allowed me to work along side her so Tyler felt safe.  Its the girl who cuts his hair and hugs him every time before he leaves.  These are the unsung heroes.  These are the people that allow his world to continue to rotate smoothly.

If you are a special needs caregiver, think about those role players that keep your world rotating.  Chances are if you have a wonderful doctor, there is also a nurse or assistant that treats you well.  If you think your child is in a great school, that school is not just a teacher but an office staff, administration, and teacher's aides.  If you enjoy your church there are wonderful people doing things behind the scenes to allow the pastor to be at his best to deliver the message.  

These role players are no less important than the "star" players, and things would not work properly without them.  Salute those role players.  Tell those role players that you think they do a great job.  

If you serve as one of those role players in other aspects of your life (and nearly all of us do in one form or another), remember that you are an important part of a total team effort. 

Tom Brady can be the best quarterback ever, but if he doesn't have a good wide receiver, running back, and offensive line doing their jobs, he can't be successful.

Be well and God Bless.   Tom

Pets

Good afternoon!

Pets are a common part of most households.  They can be delightful company to their humans, and become valuable members of the family.  When the right animal is with the right family it can be a beautiful thing.

Pet ownership is also a tremendous responsibility as any pet owner understands.  They have to have their own individual love and attention, as well as all of the typical needs such as food, grooming, and medical care.  There is definitely a financial impact to all of these things too.  Any family considering a pet should consider things like budget, family dynamic, time at home, and living space.  

Individuals with special needs can respond very well to pets.  The pets can become a source of comfort for a special person.  There are many, many stories of animals who help reach those people in ways that no human ever could.

We also have to consider the cautionary tales as well.  Often the link between the person and the animal is not perfect.  The animal could actually become a victim of aggression.  If the animal is being mentally or physically abused it could cause aggression by the animal as well.  

In our experience we chose dogs which had some specific qualities.  We wanted a dog that would be small and not likely to impose on Tyler's space.  We also wanted a dog that would be sturdy and solid versus one that was frail in case he would accidentally or purposely make physical contact with them.  We looked for a dog that would be less likely to cause a bite in case there was a serious problem.  Once we knew these criteria we decided that the Pug would be our preferred breed.

Tyler grew up much of his life with "Abby" and "Jack".  Both dogs learned quickly that if they left Tyler alone, he generally left them alone.  This was not the warm and fuzzy arrangement we would dream of, it was more of a co-existence.  When Tyler became upset he did try to hit the dogs and they would scatter for higher ground.  But there were also times that he would spontaneously walk over to the dogs and pet them.  Both dogs were very patient and caring creatures who would never think of putting a mark on either of our children.

Abby died over 2 years ago.  She was the most gentle creature I've ever known. Unfortunately Jack has become ill and we are considering a peaceful end for him very soon. We were unbelievably lucky to have them each for 13 years and they served us with loyalty and compassion.  

Before you consider putting a special needs person with a pet, consider these things:

1.  What are the special considerations of that person?  Could a certain kind of pet cause anxiety, space issues, etc.  

2.  What are the common personality traits of the type of animal you would like? 

3.  Will you know the background of the animal?  Getting an animal where you do not know their temperament and behavior history is very risky

4.  Give the person some exposure to that type of animal prior to making a situation permanent.  

5.  Keep your thinking REAL and not IDEAL

The goal is to make sure that animal placements last forever.  We do not want an animal that is dangerous to our children, or at risks themselves for abuse.  Once a relationship is deemed to be unmanageable, it can lead down a very lonely path for the animal.

Be well and God bless.   Tom 

Mementos

Each morning when I brush my teeth I see that Tyler's toothbrush is still in the holder right along side of mine.  Its a silly little thing I know, but it gives me some comfort to see it there. Sam sometimes uses a cup with Tyler's name on it because she likes to think of him when she uses it.  

I have other small family mementos as well.  There is a Christmas ornament that is nearly 25 years old now which has a recorded message from my Grandmother just months before she passed away.  It still works great and our favorite tradition is to play it and then have it be the first ornament on the tree.  I have my Grandpa's dog tag from his time in the service. 

With this in mind I certainly don't think having a few of Tyler's everyday things is strange or unusual.  To me it is way to say to him "you may not live here anymore, but you are a part of our home and always will be".  

We have come to understand that it is not likely Tyler will come back home for visits any time soon.  We would love to have a situation where bringing him home for an evening or a weekend is something to consider.  But that is not the reality that we live in.  Tyler can become very easily upset when he mixes his new "normal" with his old one.  All of us are fairly sure that a visit back home would be extremely confusing for him.  Any benefit would be overwhelmed by emotions he cannot process properly.

In our hearts we know that wherever we call home, Tyler is with us.  His laugh and his love still fill every room.  We no longer talk about the stressful times, but rather focus on the funny things he would do.  

Loss is a universal thing.  Every one of us experiences losses in various forms whether it is through a loved one passing away, or when a living situation changes.  Children move away to college or marry, Grandparents move to nursing homes and pass away, and our special needs individuals are often accepted into more specialized care.  

Its important to try to find a balance somewhere between holding on too tightly, and letting go.  Our lives must continue to go on despite the loss.  I think it is perfectly normal to have some items around to remind us of those relationships.  It's wonderful to carry those memories with us as we move forward through our own lives, so long as we continue to indeed live our own lives too.  We cannot live in the past but we can carry those wonderful memories with us today, and tomorrow, and so on.

So for now I start every morning seeing that toothbrush and it makes my heart smile.  He is living his life in a new way, but a piece of him remains in my heart as well.

Be well and God bless.   Tom