Give Thanks

Good afternoon!

I just wanted to take a moment to say something I feel very strongly about.  

The world today is more complex than ever.  And somewhere along the line I think we have lost some fundamental human concepts.  The one I want to mention today is remembering to show love and appreciation to the people that help you along the way.

I can't possibly count how many nurses, doctors, etc. have been there for our family.  I hope along the way I remembered to spend a personal moment with each and tell them that they did something special.  

Please think about that next time someone comes through for you.  Tell them that they did a great job.  Tell them you appreciate their efforts.  For many they are in the field so they might help people, not just to gather a paycheck.  They will feel great when you look them in the eye and tell them they made a difference.  Not only will they feel good but you never know if it will encourage them in a way they needed right then.

So just remember, those that serve need to know you care about them as well.  A smile and a "thank you" doesn't cost a thing!

Be well and God bless.   Tom

Hospital Visit

Good afternoon!

We received word from Tyler's home yesterday that he wasn't feeling very well.  Over about a 48 hour span he was barely eating and just seemed overly tired.

Here is where the teamwork I always talk about comes into play.  His agency did a great job communicating with us on what was happening.  At this point we began making coordinated decisions.  We consulted Tyler's doctor, got images of his belly, and ultimately the team decided an ER visit was the safest course of action.  Tyler's belly was firm and distended so the suspicion was that of a blockage of some sort.  

The hospital did a good job getting him back to be seen, and the ball was rolling.  The hospital staff worked pretty well with all of us and each situation was evaluated from all angles.

One important moment came when the doctors evaluated his X-rays.  The study showed a lot of gas throughout his intestines which was alarming to the doctors.  However, I know that his x-rays for years have shown a similar pattern, so I requested we pull those up and look at them together.  Immediately the thinking changed because while having that much gas is not nearly normal for almost anyone, it is for him.  Suddenly the thought of surgery was less likely.  They eventually found a blockage that was quickly resolved and the next day he was headed back to his home.

I have a tendency to look back on these things and evaluate what went right, and what didn't go as well as we would have hoped.  This is an important process for a caregiver so that each experience can hopefully be more successful than the last.  Here is what I learned:

1.  Make sure that a good communication plan is in place in case of medical emergency
2.  Assert yourself as an active participant in decision making
3.  Be well educated in test results and previous occurrences
4.  Offer concise and constructive opinions.  Make yourself an asset to the team
5.  Don't be afraid to disagree or want a better explanation.  It's your right
6.  No matter what happens be calm and polite.  Losing your emotions serves nothing

We were fortunate that this was a minor procedure and he should improve quickly.  But regardless of what was happening, I remembered to stay focused, calm, and engaged.  If you do this as a caregiver, you will be happier with the results.

Be well and God bless.   Tom

Today's Visit

Today was a beautiful day.  The weather could not have been any better with brilliant blue skies and a light breeze to keep it just a little cool and comfortable.  Even better was our being able to visit with Tyler at the park.

As usual he seemed to be a little taken back with seeing us at first.  But that quickly wore off and many of his old tendencies with us came back.  We spent about an hour with him, which he was happy to spend with us as well.  We got some pictures and walked some laps around the park.  

He was with one of his terrific caregivers today which gave us a chance to catch up on how Tyler is doing.  According to him Tyler has been continuing to make great strides in his new home.  His aggression toward staff for now is almost completely non-existent.  He has stopped kicking at the walls so well now that everything has been repaired and freshly painted and the house is looking great.  He and his housemate have seemed to find a mutual understanding of how to co-exist and may even be forming a bond.  Church continues to go very well.  The agency is also looking at more and more opportunities to get him out into the community.

The best part of all is that right now Tyler seems to be happy with his life.  He looks healthy, he is smiling from ear-to-ear, and all reports from everyone are that he is well adjusted to his home.  He has made it his new home and his new normal. He has grown to trust those that are caring for him and to build bonds with them.  But as you can see from the pictures he is glad to revisit the bond he has with all of us as well.  

I'm sure he feels the devotion and love we have for him and that as long as we walk this earth he will always have that.  

It really was a beautiful day.

Be well and God bless.  Tom

Currency in Communication

I have often mentioned that Tyler and I have a bond that relies on a lot of non-verbal communication.  We are very close because we figured out a language that was made of a mixture of verbalization, gesturing, and body language.  

As caregivers, we have to think about "language" in an unconventional way when we are relating to our special loved ones.  The most important thing is not HOW we come to understand each other, but the fact that we understand each other in any way possible.

For Tyler, I had to be able to imagine what its like to not be able to understand how to communicate verbally.  I imagine how stressful it would be if someday I woke up in a foreign country and could not understand what was being said to me, or had the ability to communicate what I needed.  It really is a scary thought if you think about it that way. For special needs people who are non-verbal, this is their world on a daily basis.
  
A major factor for Tyler, as with many with special needs, is the ability to develop trust with those who care for him.  Trust is almost impossible to develop without understanding between any two people.  When we look back on the vast number of people who took part in Tyler's care over the years, there is a distinctive pattern.  People who established a clearer line of communication with him by acknowledging his methods were highly more successful than those who could not. In his case, people that are direct, animated, engaging, and genuine gain his trust more quickly than people that are introverted or timid. When he senses someone has confidence in themselves and in him, he tends to be less aggressive and will allow his own personality to come through.  We use this knowledge to be smarter about who cares for him, and how they care for him.

I think there is a broad lesson to be learned here.  We all have our own forms of personal "currencies" that we collect and offer to others. We are attracted to people because we enjoy the same currencies as they deal in.  We reject other people who do not value the same things that we value.  Most people are able to adjust on the fly, but most with special needs may not.  Which is why it is so important to observe what works for them in order to gain their confidence and trust.  It takes love, patience, and time, but could be the key to a long and wonderful relationship.

Take the time to learn the currencies that your friends and loved ones find important.  Be open and allow others to see the communication values that are important to you as well. It may just change your relationships in a positive way.

Be well and God bless.   Tom

Inspiring Tyler Story

I was reminded today of a great story about Tyler that I would like to share today.

Tyler has always had a passion for basketball.  This was discovered when he was very young.  After that he was surrounded by basketball nets inside and outside of our homes.  It was a great form of exercise for him as well as being something that put him in a great mood.

Tyler's teacher and the school had decided to use this as an opportunity to socially integrate Tyler (who was in a special needs class inside of a "typical" school), as well as give some students the chance to do something good for him.  It was one of the most successful things ever done with Ty.  Throughout the years many students enjoyed their experiences with Tyler.  In fact, there were often more kids asking to be a part of it than there were spots available to do it!  What was equally as impressive is that the kids volunteered parts of their lunchtime to come and play with him.

One particular student had struggled a bit to stay on track and the school wasn't sure if they would allow him to play ball with Tyler.  After giving it some thought they decided that perhaps this would be a good experience for the young man and hopefully spark some positive things.  It did just that.  The boy was so touched by Tyler that he began working harder in order to continue with him.  Tyler had inspired this young man to care and to do better.  

Another young man who was a basketball player for the school was so inspired by Tyler's love for the game that he wanted him to have an amazing gift; his practice jersey.  To think that a young man of middle school age would have so much compassion for our Tyler was very touching.  To this day, the jersey still remains in what used to be Tyler's bedroom.  It is a prized possession worth more that all of the gold or silver in the world.

We don't know how these young men are doing now but we will never forget their selflessness and love for our Tyler.

Be well and God Bless.

Tom

I Miss You Today

Dear Tyler,

I miss you every day of course, but I have days where I miss you more.  Seeing the sun shining and spring beginning to take hold reminds me of how much I enjoyed our walks together in the park.  One of the most special things in the world to me was how you would look over at me and sign "I love you" as we walked.  In that moment I knew you felt safe, and content, and loved.  It was your way of saying to me that you enjoyed my company, and that you loved me right back.  

This was always how we connected.  Though we never had a single verbal conversation, we bonded with our hearts.  We had the ability to read each other's moods and expressions.  We had a coordination about us almost like dance partners that anticipated the other person's steps, and could make even the difficult things look easier.

It is the lucky parent who can someday look back and regard their child as one of their greatest friends.  I consider you to be one of the most wonderful friends I have in this world.  You are everything I love in a friend. You are fun to be with, you have compassion for others, and you are free with your emotions.  I am blessed beyond words that a person as courageous and honest as you wound up as my son.

I miss you today.  I miss your crazy laugh and sense of humor.  But most of all I miss just being around you.  I miss smoking my cigar and enjoying the sunshine with my boy.  

Yes, I miss you today.

Love, Daddy

Pizza Night!

I wanted to share this picture of Tyler.  He is getting along so well with his staff that he now enjoys going out into public and eating with them.  Tonight was apparently a good night to share a pizza with Kevin!  He is giving a big smile and a fist pump of approval!

This is so impressive because going out to eat with Tyler had become very difficult.  My wife and I had become guilty of always picking up food because it was easier and less risky to do it that way.  But now that he is with a professional staff that he trusts, and on medications that are helping him, he is able to do more in the community all the time.  

So much of making this transition was having the strength to realize that it was his time to make his own way as an adult.  And that Robin and I were not equipped to provide that for him.  

Just always remember, no matter what the situation is or how much you feel as though you can't find an answer, better days will come.  Answers will come.  You have to have faith in that.  

If you are struggling to find your footing...just look at this happy guy getting his pizza.  We never stopped working, or believing, and that smile is worth everything we went through to get to this point.

Be well and God bless.   Tom  

Reach Out!

Caregivers are constantly faced with decisions that challenge us emotionally, physically, and intellectually.  Often the issues that we face have no "right answer" and require a lot of consideration of how one aspect will balance against another.  Many times the hurdles we face resemble an algebra problem more than anything.  And I stunk at algebra.

This is where having people to talk to, consult, and confide in can make a tremendous difference in your life.  We have been extremely blessed to have family, friends, therapists, neighbors, and a pastor that we can talk to.  Perhaps not all of these people have direct knowledge of our situation, but they are compassionate, sympathetic, and willing to support us in any way that they can.

There are times that we need advice, but there are more times where we need love and understanding.  The day we moved Tyler into his new home was without a doubt the most difficult day of my life.  One thing that stands out among all of those difficult memories is the overwhelming support that we received from everyone.  We immediately began getting calls, cards, e-mails, and facebook messages assuring us that everything would be ok.  Our neighbors had a nice plant arrangement delivered to our home that day.  More neighbors stopped us during our walks just to ask how everyone was doing.

Looking back I realize how critical it was to remain open and to talk to these trusted folks. The more we reached out, the more support we got in return.  And the more support we felt, the more strength we would be finding to sustain us.  

I believe that you have to reach out in as many ways as possible.  This very blog helps me to remain strong by knowing that it helps others.  It also allows me to tell our stories which helps me to process my thoughts.  If you are a member of a church, reach out there.  If its possible, find a therapist you can trust.  Join chat groups which have people going through your particular circumstances.  Talk to friends and family that you know you can talk to without fear of being judged.  Ask your case manager or someone in a similar position for support contacts of people you can talk with who have been where you are.  Check relevant websites for charity events, walks, or gatherings of support.  Regardless of where you find it, make sure you find it.

Lastly, if you reach a time and a place where you are able, consider reaching out to help others.  You can be a mentor, start a blog, start a facebook page, etc.  The more of us who have "been there" can provide support to others, the easier their walk will be.

Be well and God bless.   Tom

Trip to DC

The girls and I decided to try something new last weekend; we took a trip with friends to Washington DC for just the 3 of us.  This was quite a milestone for us as the 3 of us had never traveled together without Tyler.

We had a great time seeing the monuments, visiting Arlington Cemetery, going to Ford's Theater where Lincoln was shot, and visiting some museums.  We also walked to the White House and took some photos. 

Of course there were times we missed Tyler and even felt guilty about doing something without him.  I know he would have liked the walk outside around the monuments.  

But as I was thinking about him, a very important realization came to mind.  For the most part, the trip for him would have been stressful.  After all, Tyler does not understand who Lincoln, Kennedy, Washington, or any of the other presidents were.  The crowds of people would have made him anxious.  And the museums would have held no value to him and he would have become bored and irritable. When Tyler becomes anxious and irritable, I become anxious and irritable, and suddenly my thoughts are "how do we get through this?", versus having a good time.  Then, when Tyler is anxious, and I am anxious, it trickles down to everyone else.  


Instead, Tyler was at his home watching baseball, doing his activities, and doing his routine. He was happy and without stress. We were able to do some amazing sightseeing and allow ourselves some proper relaxation.  Samantha was able to enjoy just being herself.

So what was there to feel guilty about exactly?  Tyler had a great weekend being cared for by his professional caregivers. We experienced new things in a whole new way. It would have been great if we could have enjoyed the experience with him, and maybe that is what we feel badly about, but the reality of the situation is what must be realized.  We can't wish him to be with us for the sake of him being unhappy, stressed, and miserable. While we always tried to include him in things so we could be together as a family, in the end it really may not have been fair to him.  

I think sometimes guilt comes from believing that we SHOULD be feeling guilty.  But the healthiest thing for a caregiver to do is to be objective about the situation, and if you can honestly say that everyone is in the best situation possible at the time, that needs to be enough. To stop living and experiencing life because your person in need has had their lives change is fruitless and serves nothing.

Continue to live and love, because once your own life is gone, its gone.

Be well and God bless.   Tom

Take out the Trash

Being a caregiver is difficult even when you have a good day.  You have to think about your energy level as a daily tank of gas.  The best way to conserve energy is to try and go along smoothly.  When you try to drive 90 miles per hour you deplete your energy.  We can't avoid all stress but it's important to conserve everywhere you can.  Find those things that help to refuel you.  For me, it was walking outside.  I could even walk with Tyler and decompress which was a great bonus.  There is just something about the sun, fresh air, and saying hello to neighbors that comforts me and recharges my energy.

Another important way to save energy is to no carry around heavy loads of "trash".  What I mean by trash are the things that are not adding value to your journey.  Those things that are occupying your time and space but are just taking up your resources.  There are all kinds of clutter in everyone's life and we can all benefit from losing some of it.

Some of this clutter may be in the form of your schedule.  Try finding even small ways to consolidate appointments or errands.  Also try very hard to leave a day each week that is free from extra obligations.  One day that remains blank on the calendar can be very therapeutic.

Clutter can also be in the form of physical items.  A stress relieving tip for all walks of life is to keep your living and work spaces as open as possible.  When spaces are crowded your anxiety level is effected.  Open up your spaces, give yourself room to move, and take out the trash.

The last thing I will mention is relationship trash.  This can be the most energy-sapping clutter of all.  We know that not everyone can understand the special needs that we deal with, in fact most people don't, and that is ok.  But if you have someone in the dynamic that is working against you and is draining your energy source, you need to reevaluate that relationship.  Simply put, you have no room for negative energy in your life.  And if you allow the negativity to rob your resources, you are also robbing your person in need as well.  This is easy to say and hard to do, but sometimes you have to either place the relationship in a certain context or let it go all together.

Let me be clear...if you have someone in your life that is unwilling to accept your situation, or your loved one, or you and role, you have to address it, and if necessary make changes.  In the caregiver world there are the hurdles we cannot control (and plenty of them) so it is crazy to allow room for someone who adds more.

Treasure the people in your life that care.  Maybe they can't understand and relate but they care enough to walk with you the best they can.  Stick with those that lift you up, make you stronger, encourage you, love you, and spend time with you any way they can.  When you concentrate on those positive relationships, the negative will begin to fall away.  Maybe it's best to let it.

Be well and God Bless.  Tom