A Few Happy Pictures

So much of what is discussed here is emotional and sometimes difficult.  But no matter what, I never, ever forget what a blessing to my life Tyler has been.  His love, courage, and spirit are pieces of my heart that I feel every day.  I wanted to post a few pictures that
exemplify those wonderful qualities...


Tyler tickling his little sister!

Family visit to Clemson SC



"Playing Poker" at a family gathering!

 

The Sadness of Regression

Autism, as with other cognitive disorders, can very often come with your loved one regressing in their abilities. In fact, I just read that doctors are now fully acknowledging that this is not a myth or somehow misinterpretation of caregivers, but rather a reality that they must endure.

There are few things worse, I believe, than watching a person slip away from you.  I have limited experience with Alzheimer's but I cannot image the pain that family goes through when that loved one no longer knows who they are, or worse yet, rejects them.  Some parents experience their child literally feeling their speech and thought going away, which must be utterly terrifying.

A few days ago I went and got an old VHS tape of family vacations, birthdays, etc.  My daughter was particularly interested in them since she didn't know him as a young boy.  We hadn't watched it for a while.  The tape brings forth a lot of powerful and conflicting emotions.  Its hard to watch something that can bring laughter and tears to your eyes one minute, and bring sadness and more tears the very next.

When Tyler was much younger he had an extraverted personality.  He thought everyone, whether he knew them or not, would find him absolutely entertaining. He smiled, laughed, hugged, and showed everyone a lot of trust and love.  We made faces together and making him laugh was as easy as snapping your fingers.  The video shows him jumping into my arms and wanting to pretend to wrestle on the floor.  No need to wonder if he was a happy little boy, he wore it all over his face.  He liked to babble and sing and make happy sounds.

As the years went on, Tyler began to change.  You could see that the extraverted personality became more closed in little by little.   Hugs became harder to get, and when you did get them they were stiff and cold.  Speech and facial expressions had eroded away steadily.  It seemed he could go weeks or months without so much as a smile.  He no longer liked to be wrestled with or manipulated physically in any way.  Where he used to allow me to use a disposable razor to shave him, he later would not even use an electric razor. 

As a Dad it is a crushing reality to see that your happy and exuberant child is slipping away.  That this little guy who used to squeeze my neck and jump off the couch to splash down on top of me, became the young man who hit at my hands when I tried to shave him or wash his hair, was very hard to come to grips with.  I always wanted nothing more than to bring him joy and make him feel laughter and love.  It's very hard to know that things that none of us can control have severely limited his ability to feel those things anymore.

I love Tyler every day for who he is.  As his needs changed, our relationship did as well. And as glad as I have always been to spend quality time with him, I do miss those days of laughs and hugs (I'm only human after all).  But because I love him more than anything, I will support him in every way that makes him feel happy and secure.

Regression is a cruel experience.  As hard as it is to do, and as much as your heart may be breaking, we have to value each day for the person that we do have.  Then, every once in a while, grab a few tissues and allow yourself to go back and remember that person the way they were at an earlier point.

Be well and good luck.  Tom

Caregiver Diversity

So often I write a post and other important subjects jump into my head.  There are endless amounts of discussion that could take place about so many things.  This might be a good time to remind you that most of my posts are based on my own experiences which have developed into opinions.

A previous post talks about the importance of assembling a good team of caregivers.  To take that one step further I believe that having a DIVERSE team is key.  And what I mean by diversity is that there should be a variety of separate entities involved in the care of your person in need.  In my opinion, if avoidable, all things should not be done and controlled through a single agency.

Lets use Tyler as an example.  He wakes up in the morning under the care of his residential (and "primary") home caregivers.  5 days per week he is taken to his day program which is a completely separate entity altogether.  He has a Case Manager that works for yet a different entity and acts as an independent set of eyes when she visits Tyler in either of his 2 regular setting.  Then he goes to church activities Thursday and Sunday where his pastor is a neighbor and friend to the family.  Add to this his doctors and even the lady that cuts his hair (and who adores him) who see him on a regular basis.

As with everything, there is upside to this strategy as well as downside.  The downside is it takes additional coordination and communication to maintain good relationships and there is always a risk of there being too many cooks in the kitchen.  But I think the upsides are worth the risk.

Many of his team members have gotten to know Tyler previous to his transition.  So, in effect, they know his "baseline", or what are normal reactions for him.  Because of this, they know when he is feeling ok, and when he isn't.  This is of great value because it makes a red flag stand out.  This strategy also provides a natural check-and-balance that I believe to be healthy.  It maintains an accountability level for everyone which protects Tyler's best interest.  After all, Tyler cannot speak for himself.  He cannot report something or someone who is not acting in his best interest.  So our responsibility to him is to create an environment that has some built-in protections.

The truth is that no matter what we do as caregivers there are no guarantees or absolutes.  As much as we love our person in need, we cannot be everywhere.  But we can do things to put the odds in their favor, most importantly is creating not only a team of caring people, but caring people who answer to people of diverse associations.

Be well and good luck.  Tom

Tyler Update

I am happy to report that Tyler had an excellent week again this week.  His day program helped him celebrate his birthday on Monday with donuts.  We just can't find the words to express how much the support of the entire day program staff means to us, especially Tyler's main man Kevin.  Kevin has an exceptional gift that we are blessed he is willing to share with his room of special adults.

Tyler's home staff also said he had a good week at home.  Even with getting his new housemate he has maintained a good attitude.  Apparently the two young men match up pretty well so far.  Tyler also had his normal church activities which he seemed to enjoy very much. 

It seems that with each passing day, Tyler is learning to embrace all of these wonderful people and places.  As I discussed in an earlier post, these incredible people are the keystone to the successes we have experienced so far. 

I've learned that with the autism spectrum you have to define success in a different way than most people can.  For Tyler, success can mean a medical procedure that was completed without anyone getting bruised too badly.  Or a change in the house that he learns to accept.  Or a week where his staff says he was happy and healthy.  Success for Tyler can be defined in many different ways, but we cherish them all. 

All I can say is that today, right now, he seems happy with his life.  So today we can breathe a little easier.

Be well and good luck.  Tom

Welcome to New Visitors

I'd like to welcome new visitors to the blog!  Thanks to Autism Speaks for providing yet another avenue to get the word out. 

Caregivers who care for their loved ones need each other to draw courage and strength from.  I hope we can provide a little of that here.

I encourage new visitors and regular visitors to leave feedback on any item that moves you in some way.  It would be great to hear from you!

Be well and good luck.  Tom

The Power of Honesty

One of the biggest challenges that I have faced as Tyler’s Dad was finding the ability to be completely honest with myself.  And when I say “honest” I mean truly honest and then being willing to own what I was thinking and feeling. 

Throughout our lives I think there are many times when we feel a certain way about who we are, but we create reasons to rationalize our feelings, suppress them, or flat out ignore them.  Perhaps we convince ourselves that we are wrong or have no right to feel the way we feel.  We figure out justifications to continue on the same way and “make it work” the best way we can.  This can apply to our marriage, our job, our children, or other matters that we feel deep in our hearts that we need to evaluate or change.  I hadn’t realized just how much I had done this for so many years about who we were.

As silly as this will sound, Sandals Resort commercials began the honesty process for me.  I would be watching TV and one of these commercials would come on encouraging me and my significant other to drop everything and come frolic on the beach.  Then they would show me these happy people skipping through the surf and sipping drinks, and I would actually become ANGRY with these slobs, thinking to myself “they don’t have a clue how lucky they are to just have the ability to go on vacation like that……they just take it for granted…..why don’t I have the right to do that too?.....after all I too only have one life to live and its not fair that I can’t”.  Then I would immediately feel ashamed of myself.  It was as though I was selfishly dishonoring my son by having the gall to complain about caring for him.  How dare I think about myself when he was the one who needed my help?  So I would suppress those feelings and return to life as normal.  Whether I realized it or not I was doing the Sandals scenario about a lot of things and not just about my wellbeing but our marriage was not what it should be, our daughter was not as happy as she should be, and Tyler was not flourishing like he should be.  We became experts at surviving, but had forgotten how to live. 

One day we had a meeting scheduled with our Case Manager and I had decided to ask her about how we should be planning for Tyler’s long term future.  I had never openly asked about this because of how it would actually sound coming out of my mouth.  It would sound like I didn’t want to care for him anymore, or that I had given up on him.  But I also knew that we were tired, and to degree, so was he.  I was looking around my house and thinking “What kind of lives are we living….when nobody is truly happy”?  I found an opening and I asked the question.  It was as though a cork had been dislodged.  For what seemed like an hour (and it may very well have been) I placed my inner thoughts on the table one by one.  I talked about how concerned I was that the care we were providing was no longer meeting Tyler’s needs.  That we were afraid to admit that we were tired.  That we felt as though we had run out of ideas a long time ago.  That we were afraid of one of us becoming incapacitated and the other being left in peril.  That my wife and I were married for 25 years and yet have never gotten to truly experience a life together.  That we felt our daughter’s happiness was being compromised.  And especially, that I could no longer justify living where nobody was happy.  I was basically admitting everything I pretended to be so damn sure about was just a front.  I was actually frustrated, tired, afraid, and running out of hope.  We were lost and over our heads and I could no longer pretend otherwise.  Our Case Worker was only momentarily taken back by this sudden flood of honestly, but then immediately shifted gears to addressing each point.  All at once I had just made her job much more clear, and now she could help us in ways we never thought possible.  To paraphrase Jerry McGuire…..I helped her help me. 

From that moment on we stopped denying our feelings and decided that we would own them.  Some days those feelings will be hopeful and some days they will be sad and some days they will even be ugly.  But even ugly feelings serve a purpose and we learn from them.  I found that therapy was the best place for me to first allow my thoughts to find a voice.  And instead of my feelings being met with shock and scorn as I had imagined, the reaction was just the opposite.  It was ok for me to want more for everyone, including myself.  I started to share more with my wife and the reaction was not only the same, but she was often feeling the same way as well.  This makes us an incredibly more effective team for Tyler.

We had taken what has proven to be a critical step forward by laying our cards on the table.  It has made it so much easier to communicate with not only each other, but with everyone involved with our transition.  It also allowed us to step back and evaluate each specific concern and make them part of the overall plan.  Some of those concerns have naturally take priority over others, and some have even be tucked away for later, but they have all be given their attention.  Perhaps best of all is the relief of not carrying them around anymore. 

My message for today is to take inventory of those emotions.  They belong to you and you have every right to them, ALL of them.  Give voice to the fears as well as the hopes.  Embrace it all, even when it is painful to do so.  As you let this baggage out, it makes room for more ideas and constructive thoughts to come in.  Lay those cards down on the table one by one and then step back and look at them for what they are. You will become more effective at developing your plan which will ultimately be better for everyone involved.  And most importantly, be honest about where you are, and you will be amazed by where it takes you.

Be well and good luck.  Tom

Birthday Party

 

Today we had a small family celebration for Tyler's 24th birthday.  This was the first time his extended family would have the opportunity to spend a little face time with him.  He would also have a couple of staff members with him, which was nice so that our family could meet some people that work with him every day.

We knew that this would be a test for him since this was his first opportunity to have a lot of family back around him.  The possibility of him feeling overwhelmed was quite real.  We tried to tilt the odds in our favor by choosing a less-busy time and getting a whole area to ourselves.

As caregivers we know that the only predictable thing is that the situation will be unpredictable.  I would love to have some feel-good story to tell about how warm and fuzzy and perfect everything went, but that isn't the reality of it.  As has always been the norm, there were up and downs.

Tyler came into the back room of the restaurant and of course we were all excited to see him.  Our exuberance may have thrown him just a little, as this was a lot for him to process.  I helped get him settled into his chair and after a couple of moments of him staring straight down and trying to get his head around what was happening, he perked up a bit.  He seemed to want my attention very early on and kept very focused on me throughout the party. 

He happily ate his onion rings and pizza, but didn't seem too eager to focus on much except his food and me.  As soon as he was finished eating he began pointing to the exit.  He was ready to go.  This was not a good sign.  Once Ty makes up his mind to hit the exit there is little to persuade him otherwise.  I asked for some gifts for him to open so that it would distract him.  It didn't distract him, but rather it made him angry.  His head went down and he started to hit at his caretaker.  In a last ditch effort to salvage the situation I took him to the bathroom where he giggled about us washing our hands and tearing off paper towels and throwing them away.  Fortunately once he got back to the table this diversion proved valuable in buying us enough good will to sing happy birthday, blow out his candle, and eat his cupcake before getting him packed up to go.

Outside he eagerly got into the caregivers car and was happy to get going again.  We said goodbye through the passenger window, which he smiled and said "I love you", and he was once again gone.

The family was understanding that this was our first attempt at a family outing so we would be happy with even small victories.

I needed some time to reflect on how I felt about the outing.  I couldn't help but to feel some disappointment that it didn't go a little better.  I hated that he felt he needed to act out.  I also felt bad that Ty was so focused on me that he didn't seem willing to enjoy the others who had come to see him.  On the other hand, it was so great to see him.  He looks very well groomed, clean, and healthy.  And watching him get into the car I couldn't help but wonder if his new home and caregivers are becoming more his source of security than what we are now.  It makes it hard to know how frequently we should push him to see all of us, and how to do it to minimize his anxiety.

The answer is that there is no right answer.  We will just have to arrange for Robin and I to see him again with a short visit and see how it goes.  And to try to keep our expectations modest and to simply be thankful for the blessings of each visit.

Be well and good luck.  Tom

Tyler Update

Each week I would like to provide an update on how Tyler is doing.  His weekly successes and occasional setbacks will help to provide a backdrop for more topics of discussion.

A few weeks ago Tyler seemed to be suffering from a flu or virus of some sort.  This was the first time since his transition that he has been ill.  Of course we knew the day would come, but we hated the thought of our guy suffering illness without us to comfort him.  These are the times where Tyler is still that 8-year-old boy in our minds.  But as expected his caregiving teams, day program and residential, restored him back to health.

No matter how well things are going, it's still hard to think about someone else consoling my "child" when he is sick.  My wife and I had nursed him through a lot of bad times, mostly with patience and love. It's true he had to learn to allow his staff to fill that role, but it doesn't mean that a part of me wasn't left feeling a little empty and unneeded. In the end I'm glad he is feeling back to his old self, and that his staff learned more about him through this experience.

This week Tyler was back to full health.  He continues to love his day program and thrive there.  His home reports that his aggression has been decreasing over time and they are proud of his progress.  He has been attending church activities and has also been participating in an art class.  It's obvious he is kept busy and is enjoying a more adult lifestyle than he had here with us.

The big news was that Tyler got a housemate on Monday.  The house is only designed for two disabled adults so they will be the only two staying there.  Tyler was a bit grumpy about sharing his space for a day or so but now reports are that he has adjusted just fine.  Hopefully it will be a relationship that will last for a long time.

We will be celebrating his birthday tomorrow with a pizza party at a local restaurant.  This will be his first time seeing his grandparents since his move.  We are looking forward to spending some time with him and posting some photos of the occasion tomorrow night. Everyone is excited to see him!

Be well and good luck!  Tom

Leading the Team

A previous post dealt with making sure that you have great team members.  This made me think about how every team, regardless of its goals, must have leadership.  And simply put, if you are the primary caregiver it is up to you to be the leader of your team.  In this post I want to talk about what I believe that means, and share some things that have helped me to be a better leader for our team.

My number one principle in this regard is to be a leader by being a good teammate.  We have to remember that there is only one true goal which is to provide the best quality of life for our person in need.  Each member of the team has to do their part to make the entire system works.  There are simple things that you can do to be sure you are contributing to the team:

1.    Keep a list of all medications (with dosages), past procedures, etc. that you can provide at each doctor visit.  This is also extremely handy if there is an emergency and you are stressed.  Trust me, you can forget your own name if there is a medical emergency with your child so eliminate that distraction.  This can also save time at the beginning of meetings and appointments by simply handing them a copy

2.    Make sure everyone has up-to-date information concerning insurances, your contact information, etc.  If anything changes, take the time to inform them

3.    Keep your appointments and arrive slightly early.  Being habitually late will cause friction with those members of the team

4.    Be prepared with what you would like to see discussed during meetings and appointments.  Have goals in mind of what you would like to see accomplished.  Also anticipate the information that will be discussed and have that information together.  Go in with a plan!

5.    Consider making a list of questions for meetings and appointments.  Also make notes about important items that are discussed

6.    Utilize resources that your team recommends to you.  Existing relationships between professionals can be a great asset

7.    Don’t ever assume anything.  Better to over-communicate than under

Another important thing that I believe my experience has taught me is that it’s very important to “get along”.  This can be a challenge for many of us.  I try to remember that we all have bad days where things don’t go our way, and the professionals we rely on are no different.  What I try to remember is that if there is any ill-will between me and a teacher or doctor or administrator it can have a negative effect on Tyler’s care.  We would like to believe that this doesn’t happen but it is simple human nature.  When someone feels that I genuinely care about and respect them, I believe they will be more willing to do the same for me and for Tyler. 

When Tyler entered a hospital situation, for instance, the very first thing we told the medical staff is that we are there to support them in every way we can.  And in turn we asked that we be informed and give whatever input we feel would be helpful.  In most cases this statement was met with RELIEF.  We usually looked back on those situations and were pleased with how well we all worked as a team once the staff understood our expectations.  In most cases they WANT caregivers to be involved, which makes sense because you know that person better than anybody.  When we achieved that synchronicity with staff members it was tangible how excellent Ty’s care would become, and after all, that is the real goal.

The unfortunate fact is that caregivers and special needs professionals are typically good people that are tired, stressed, and work with limited resources.  This is why I always try the team approach first.  Most people I have encountered are happy to work with parents that are willing to listen, give input, and assist in their special need person’s care.  Getting started on the right foot can make a tangible difference in how the relationships will proceed.  It’s much better for everyone if you have the reputation as a caregiver who works well with professional staff.  It is one of the single most important things we have ever done.

The final point is this…..”getting along” doesn’t always work.  There have been a few times where I’ve had to growl or show my teeth because someone isn’t cooperating with me, or worse yet Tyler.  I believe that this is fine so long as it’s kept in proper context.  Look at it this way, if you have a reputation for being pleasant to work with, and something makes you complain or growl, it will likely be taken very seriously.  If you are typically difficult, and have a complaint, it won’t sound any different and you won’t likely be met with cooperation.  I’ve even learned that there are ways to growl that gets the point across without alienating the people you rely on.  And, sometimes, when all else fails, you can simply move on to another provider.

There are some folks that will think these concepts are a bit dramatic or over-analytical, but this is truly how we have approached different types of staffs in different situations.  While there have been times circumstances have overruled these philosophies, the vast majority of relationships have been positive.  As stated earlier, it’s human nature.  When you enjoy working with someone in any walk of life, you are more willing to do whatever it takes to satisfy them.  With each professional you deal with, remember that it isn’t your emotions or ego that is at stake, but rather it’s the well-being of the person you are caring for.

Be well and good luck!   Tom

Thanks to YDR

Good morning!

Many thanks to my friends at Red Lion Zion Church and the York Daily Record for publishing the article about our little blog.  It means a lot to me and our family to be reaching so many people.  I'm sure Tyler would feel the same way. 

The emotions that caregivers endure can be crippling, and without realizing it those emotions can make it harder to be objective.  This may be one of the primary reasons that some decisions are made too late, or never made at all, even when its for everyone's well-being.

I hope that the visitors to this blog can find that honest and objective voice that enables them to identify with my experiences and perhaps think about things in a different light.

Please feel free to offer comments.  And come back often!  Tyler and I would love to hear from you!

Missing My Son

Dear Tyler,

 

I miss your infectious smile, laugh, and spirit today.  Mommy, Sam, and I love you very much. 

 

Daddy

 

 

Having a Great Team

Ever since Tyler was a baby we tried to align ourselves with professionals that we felt were competent in their field.  As we navigated through the years, we learned that while this was a very important ideal, it was only HALF of what we should be looking for.  Equally as important as “competence” is “compassion”.  And while competence is a fairly easy commodity to find, compassion is a less common treasure to find.  As 21-year-old parents we didn’t recognize how important of a role this trait would play in Tyler’s life.  All of us have probably uttered at least a hundred times “I wish this situation came with some instructions” and I suppose the answer to that is “you have to write the instructions that work for you”.

We have been very blessed with good people to work with.  For instance, Tyler’s Neurosurgeon has been with us from almost the beginning.  He is a well-respected surgeon which is the reason we went to him to begin with, but the fact that he showed time and again that he CARED about us is the reason why we stayed.  And at some point I remembered thinking that he would do anything in his power to take care of Tyler, and at times he was called upon where he did just that.  Just as importantly, he treated us, as Tyler’s parents, with respect, and he empowered us to assist in every decision.   Never underestimate the importance of professionals who look to empower you.

Unfortunately for every good story there was one that was not so good.  We once went to see a psychiatrist (who came highly recommended) who consistently showed that he didn’t remember Tyler from one visit to the next.  I found myself correcting him over and over about details that were supposedly in his file.  After about 4 of these visits, we got a new doctor.  We learned to never “settle” again.  And through the years we embraced the ones who cared, and replaced the ones who didn’t.  This would prove to be a very powerful strategy that would pay dividends to this day.

So about a year ago, as we began to think about Tyler’s long term future, we first thought about our team.  We didn’t exactly know what we would face in the future but we knew we had to be sure we had the right support system around us.  We already had doctors that we trusted, but what else did we need?  For me personally I felt I needed a therapist for myself who could help me manage my anxiety and emotions.  After all, I knew that having lived for the last 23 years where so much of my energy and emotion was devoted to Tyler’s care, any change could be a significant challenge.  I didn’t feel that I could face that without some qualified help.  My anxiety as I became older had hit critical mass and I was no longer qualified to self-diagnosis and self-medicate.  We found, almost serendipitously, that we needed someone to care for us spiritually.  We found that we have a neighbor, and now friend, who has filled that need for all of us quite well.  And it seemed that as one piece fell into place, doors opened to fill other needs. 

One thing that I cannot stress enough is the need for the right Case Manager.  Most of us have probably been through a list of Case Managers that could fill a small phone book.  And quite frankly most of them were treating the job like a stopover to bigger and better things.  We often heard how overworked and understaffed everyone is, which I am sure is true, but it never meant we intended to settle for less than what Tyler deserved.  Finally, we found Cindy.  From the very start Cindy proved to be a competent and compassionate person.  She listened to what we said….really listened….and then offered every possible suggestion and solution in her power.  We’ve told her that if she ever even considers retiring we will make her keep Tyler’s case from her rocking chair. 

Think of your doctors, case managers, teachers, etc. as members of your team.  They are the bricks in the very foundation that can provide a strong structure if assembled correctly.

I suppose my main message from today’s entry is that you need to look at each member of your team and answer these questions:  Does each member provide competence and compassion to your family?  Do you feel as though each member would do whatever it takes to help you with anything you needed?  If the answers are “yes”, you have a very important element in place.  If any answer is “no” then make it a priority to find those qualities.  Having care that is not compassionate is no care at all.

Be well and good luck.  Tom

That November Day

One of the most frequent questions that I am asked is how we were able to get through that November day when we took Tyler to his residential home.  In retrospect I believe it is a critical question to answer because perhaps that very thought is the single reason why many caregivers hang on to a situation that they know they must let go of.  I know for me personally I was not able to face this possibility for years.  Even when the possibility of his transition was being discussed I was having a very difficult time reconciling it. 

Tyler’s mental capacity in most regards is that of an 18 – 24 month old.  His thinking is very one dimensional in that he best understands the immediate moment he is living in.  If something is not directly in front of him, or if a subject is in any way abstract, he is likely not to understand it.  I believe that a great deal of his anxiety and aggression may come from the fact that he cannot anticipate and control where he is and what he does.  When Tyler and I walked together he would gently reach out one finger and touch my hip every few minutes, and when we sat down to dinner he always made sure that his knee was touching my knee.  I interpreted this as his way of staying anchored to something for a sense of security.  Thinking about this made the concept of leaving him in someone else’s hands almost unbearable.  A heartbreaking reality about Tyler is that you cannot explain ahead of time what is about to happen to him.  Out of respect for him we always explained everything anyway….we always owed him that much.

The actual day he moved away is one I will never forget.  We took him to his day program as usual, and he was smiling as usual.  We couldn’t help but look at him and think about how he was perhaps leaving our home forever and he had no way of knowing it.  We had a very busy day of getting his furniture and personal items settled into his new house, lovingly preparing for his arrival.  Being busy was a good thing, as it kept me from collapsing under the weight of the fear and guilt I was feeling.  There was about one hundred times when I wondered if my wife or I would break down and not let our “little boy” go through what he was about to go through.  Still we kept moving forward.

We picked him up at his normal time from the day program and drove him to his new home.  There was a ton of support staff ready to meet us.  We sat him at the dining table and gave him some coloring books.  After about 15 minutes it was time to allow the staff to take over.  I hugged him, kissed him, and told him I loved him, and my wife did the same.  And then there was nothing left but to leave and with one closing of the front door a chapter of my life closed. 

In my worry of how terribly lost he would feel without me, I realized how terribly empty I felt without him.  For a while I could do nothing but think about him and how he might be sitting terrified without us.  I thought about how he might be lashing out at these strangers who dared to enter his personal space.  I waited for the phone to ring.  What if this were the biggest mistake of our lives and his?  What if he emotionally implodes and never recovers?

But as these thoughts tried to shake my foundation I had some great thoughts to counter them with:

1.       We had made a good plan that was filled with amazing people.  Tyler was far from alone.  My wife and I were being replaced by an entire SYSTEM devoted to just him.  These were people who were trained and vetted to be a good fit for him. 

2.       Just as importantly, and I cannot stress this enough, we knew that what we were doing was right for his long term future.  If we could endure the pain of the separation and the emotions that we would be feeling, it would get better over time and it would be the best thing for his future.

3.       Unless I planned to live and be healthy at the age of 95, Tyler would face this day regardless of anything else.  It was far better timing now before he became more rooted in his home routine, and the waiting list for residential serves got any longer.

4.       Most importantly is that he has every right to be an adult with a life of his own.  And as his Dad it is my duty to him to allow him to find his voice and to use it for himself.

So, in the end, was Tyler terrified?  For a while.  Did he lash out?  He did.  He kicked in walls as a matter of fact.  He refused to sleep in his bedroom the first two nights.  However, despite the lack of credit I was giving him, he kept moving forward too.  The panicked phone call from staff never came.  Instead of imploding, he accepted that his surroundings had changed and that he was “ok”.  Within a few weeks he was attending church, taking art, and learning new responsibilities in his new home.  All the while he used his day program as his safe haven and excelled there as well.  He is becoming stronger, and he is indeed being an adult.

The guilt indeed comes and goes, after all you cannot always use your head to overrule your heart, but I have been able to be alright because he has been able to be alright.  After our first 100 days, I’m willing to be ok with that.

Be well and good luck - Tom

A Fun Short Story

I have a lot of great memories in the time that I have spent with Tyler.  Tyler has times of being very vibrant and jovial.  When he laughs from deep in the pit of his stomach you can’t help but to laugh along with him.  He also has these amazing times when you watch people respond to him in uncharacteristic ways, almost as though for just a moment they experience a collective understanding that is honest and compassionate.  Just a few days ago I recalled one such time.

Some years ago, my wife and I had taken Tyler to Ocean City Maryland for a handful of days of “relaxation” (most parents of special needs children understand that the term relaxation is one to use loosely).  One evening after dinner it was particularly beautiful.  We drove down to the boardwalk and walked around the lower third where most of the shops, rides, and junk food resides.  Personally I’ve always enjoyed the evening walks on the boardwalk.  There is a peace that I could always find in that time where the beach is clear and yet the sun is glowing across the sand and the water, and the boardwalk is buzzing with families.  And you hit that temperature where it is still warm but the sun is allowing the breeze to set in.  Tyler always seemed to enjoy the same atmosphere, especially the people watching aspect. 

So once we were finished with the boardwalk and ready to load up the car I decided it was just too nice out to waste so I suggested I would wheel Tyler (in his wheelchair/stroller) back to the hotel which was the entire 2.5 mile length of the boardwalk.  I felt like it would be nice walk just us two guys.  By this time as we started slowly heading back, there were a line of people sitting on the concrete retaining wall that lines the boardwalk on the beach side to protect it during storm surf.  Tyler became keenly aware of these folks and started smiling, waiving, and saying “HI!”.  Admittedly I assumed he would get a friendly smirk or a polite waive.  To my surprise the first gentlemen he came upon yelled “HEY BUDDY!” and leaned out with his hand extended to give him five.  The next person saw this and did exactly the same.  And the next.  And the next.  And so on.  And literally it became a receiving line where people up ahead were wondering what the heck the stir was about and would catch on in time to be his next high five.  Even people that I would think did not appear to be the smiling and high five type would suddenly prove me wrong and get in on the act.  Finally as we moved further along, the crowd became thinner and it was soon just he and I once again. 

For the last couple miles I could not have explained what I had just seen.  I couldn’t help but have my eyes clouded by tears thinking about how just his smile and sincere enthusiasm brought out the smiles and enthusiasm in those strangers.  I also thought about the fact that perhaps I need to give people more credit for being compassionate toward someone reaching out their hand to them.  But most of all I was just thankful, even after all we had been through, to have one of the most memorable moments as a father.  In my mind I will always be able to revisit that time, and I can still hear the ocean sounds, I can still feel the bumps of the boardwalk as we walked, and I can still feel the sun and the breeze in our face.  And best of all I will always remember how his smile made my whole world smile that day.

Be well and Good Luck.  Tom

Salute to the Caregiver

A true “caregiver” embodies both halves of the word.  First and foremost we care about that person who needs us.  And the right level of care cannot happen unless we are willing to give of ourselves in almost every way.  That unconditional love that we give, we give because our special person deserves to be treated with compassion and dignity and respect.  We are determined to treat that person better than we even seek to be treated ourselves.  We are caregivers because we accept that role, and because in our hearts it is what we want to do.

I have considered being a caregiver to Tyler to be an honor.  He has always been an amazing person whose courage and determination continue to inspire me.  He and I always had a bond where on some level he understood that I looked out for him and I could tell in his own way that he appreciated that.  Much of our communication was unspoken, but the level of love and respect for each other easily came through.  No matter what we ever went through I was proud to be there for him.  Which made the next part so hard…..

At some point I became so involved in every detail of his everyday life that I lost track of my own life.  And for years I convinced myself that doing that was “ok”.  As long as everything I did was for “the good of the team” I felt as though neglecting myself was an acceptable price to pay.  It was as though if I did something that was not directly related to Tyler I was somehow doing him a disservice.  When I was with him I was constantly on a state of high alert and hyper-attentiveness.  When I wasn’t with him I was still in a state of high alert and worry about what might be happening.  When I traveled I was terrified that each trip would be the one where something awful would happen.  When bad things happened to Tyler or because of Tyler, I blamed myself because I should have planned better and protected everyone better.  The stress was almost like a drug, you can’t image how to continue dealing with it, and you can’t imagine how your mind would adjust without it. 

Worst of all I did the unthinkable….I got older.  With getting older came an important lesson, you can’t ignore your own well-being forever.  The message my mind decided to send me came in the form of panic attacks.  I believe that I had spent so much time swallowing stress that I couldn’t push it down anymore, and it began to leak out of my pores.  When I called the doctor they said I was no longer a patient.  As it turns out it had been so many years since my last visit that I was removed from the active files.  I wish that were a joke, but it’s not, it was a wake-up call. 

I believe that caregivers, whether caring for a parent, spouse, child, or otherwise, all tell ourselves the same lie; that we are alone in our pain.  The truth is there are so many of us with so much in common.  We all wake up with a sense of cautious optimism that today will run smoothly.  We all look at our special person and wish with all of our being that we had the power to sacrifice a piece of ourselves so that they may have something more.  At the same time we pretend not to wish for a more “normal” life for ourselves, and feel guilty when we do.  We know what it’s like to dread a message or a phone call when someone else is caring for them.  And we know what it’s like to lay down at night and feel thankful if we felt like we broke even for the day.  Then we lay awake at night and think about everything that keeps us from falling asleep, wondering how we will possible keep everything going again tomorrow.

So to all caregivers I salute you for selflessly making a difference in someone’s life.  You are not alone, but rather you are special and you are part of a special community.  You have to believe that the love and the peace you are bringing someone will be graced upon you someday as well.  This is the real truth, and the only truth that can sustain us.

Be well and good luck.  Tom

Where is "Here"?

Before I can begin to post about the journey that led us here, I should explain exactly where “here” is. 

A few years ago I started to look around me and realize that “here” was feeling very much like a small and dark room, which over the years had very slowly but steadily become smaller.  Our days reminded me of the movie Groundhog Day in their predictability.  The lofty goal every day was to make it through without something bad happening.  And when I looked at Tyler I had this increasing sense that there must be more out there for him as well.  We spent so much time building a protective wall around Tyler, and thus ourselves, that we lost sight of the fact that the walls that keep things out also trap things in.  Life needed to change for him and for the rest of us too.

Tyler was placed with a residential agency in November of 2015.  He currently lives in a nice small home less than 10 miles from us.  At present he is the only resident (along with staff) until he eventually gets a housemate.  His staff appears to be incredibly attentive and has a genuine affection for Tyler which is of great value to my wife and me.  They have also demonstrated that they are highly capable of making a plan and executing it well.  In his new home Tyler is expected to help around the house with dishes, picking out his clothes, and packing his lunch.  These are things that we did not require of him at home.  He also attends his day program which he has completely embraced.  He is also attending church programs twice per week which I’m told is quickly becoming a caring community around him.  Again, these were not experiencing he was getting at home.  He is even getting art classes now!

It might be easy to wonder why he was not as active with most of these things here at home, and that would be a fair question.  It certainly was not a lack of love for Tyler or willingness to give him attention.  It was more about that small dark room we had placed ourselves in.  What I mean is, we lost the ability to see past our limitations.  And as restrictive and dark as that room may have been, it was a safe place where we felt we were in control.  And….yes….it was easier.  Going out in public was hard, and there were risks of someone getting hit or kicked.  And remember, the goal had become making it through the day without something bad happening.  It became a self-fulfilling prophesy: the more we dug into our safe place, the smaller it got.  Now we are seeing how much that was inhibiting Tyler too. 

Of course the transition for Tyler was difficult at first.  Without any ability to understand ahead of time it must have been quite a scary experience.  But his courage was incredible and within about a week he improved in his acceptance of the staff and the routine and has been surprising everyone ever since.  He also has a doctor and behavior specialist team who are monitoring him closely and working toward using his medications to help him continue in his long term wellness.  When there is a health issue he is attended to in a swift and sure manner.

Overall there are probably a dozen people accounting for him every day in direct and indirect ways.  There are financial resources solidly in place for his long term care.  Those directly caring for him have ONE priority….and that is him.  These are the reasons why his level of care needed to change, and why we are so glad that we did.

That is just a quick snapshot of where we are today.  There are many subject here that will become blog entries of their own.  Anyone who is considering how their future could possibly look have similar questions:  What if something happens to me?  How would my love one survive a change?  How do I know when the time is right?  How would I deal with my own emotions?  The list goes on.  Many entries will hopefully address how we answered these questions for our situation, and hopefully help others to find their answers too.

Be well and good luck.    Tom

To My Son

Today I walked along our path

The way we used to do

And thought of all the many things

A Dad and Son’s been through

Sometimes the sun would shine the way

But we never feared the rain

As long as we were side by side

The sun would shine again

The road looks as it always did

And the sky can be as blue

It will never quite be the same

As when I walked with you