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