Thanksgiving Part 2

Thanksgiving day went about as well as we could have hoped.  We gathered late in the morning and prepared anxiously for Tyler's arrival.  Would he be overwhelmed?  Would he be happy to see all of us or would he feel stressed?

Tyler arrived at noon.  I greeted him at the door, helped him with his jacket, and got him seated at the table.  He gave everyone a wave and a "HEY!" as he settled in.  His staffer sat down across from him and we were all ready to enjoy a Thanksgiving feast.  Tyler's face seemed to suggest he was alternating between being happy to see everyone, and feeling a bit anxious.

As the meal went on he seemed to loosen up a little bit.  As usual he wanted to do the typical familiar imitating and catch-phrases with me.  He started to look around a little more and wanted the attention of his Great Grandpa.  As the meal wound down it became evident that he was wanting to go back to his house.  

At this point I want to stop and explain that his wanting to leave immediately after eating is completely ok.  Of course I would love to have him want to stay all afternoon, but that isn't the reality of Tyler.  It is not that he is rejecting us as his family, it is that he has accepted his residence as his secure home.  That is the best case scenario possible.  All of us would willingly sacrifice what we want for ourselves to have him be healthy and happy in his home.

Once dinner was over we felt it would be wise to get a few pictures, get a few hugs, and let him get on his way.  Fortunately once the camera came out he was willing to smile and pose with everyone.  It felt so good for all of us to be close to him once again.  The circumstances may change but our love never does.

And just one other follow-up.  My mother-in-law cheated at cards again and wound up beating the rest of us into the ground.  No seriously, you could call any wild card and she will end up with 3 of them.  I had 5 of a kind and LOST.  Personally I think she keeps a matching deck in her sleeve and pulls out the cards she needs without us noticing.

Love you Mom.

Be well and God Bless.  Tom

Happy Thanksgiving

I hope that I'm good at being thankful all year long for the many blessings that I have received in my life.  That being said, this is the time of year that we are reminded to reflect on how fortunate we are for even the most simple of things.  We should also think of those who are struggling and in need.  

We will be heading to my in-laws tomorrow as is our custom.  I am particularly blessed with such wonderful family to spend so many of these holidays with.  Despite there being less than 10 of us, there is enough food for a week's worth of leftovers.  After dinner we partake in some penny poker and no matter where I sit my mother-in-law gets all of my good cards. Of course we enjoy the turkey, pumpkin pie, and football, but the day is really all about being together.  It's about relaxing, pretending to seriously argue about nothing, and sharing the love we have been so blessed to receive.

We made the decision that Tyler and a staffer will join us.  We are so happy that he is far enough along with his new home that we can consider having him come for the meal.  They will come right as we sit down and if all goes well he will stay for a little bit afterward.  But if he feels uncomfortable we will allow him to eat and run.  We feel its important that Tyler have the ability to feel his family around him during the holiday season.  This is just the first step to see how well he does or doesn't do.  If it goes well we will know we have one more option for the future.

We all have stresses in life, and we all experience loss.  Its part of life.  Many of my readers experience tremendous struggles and pain to which we sometimes cannot see the right answers.  So when you read this I want you to clear your mind and say out loud all of those little things that you have to be thankful for.  Here is mine:

Today I am thankful that I am alive and relatively well.  I am thankful that I have biological family, married family, and non-biological family that share their love with me.  I am thankful for Tyler's health and happiness and all of those wonderful people who look after him so well.  I'm thankful that I have employment and can provide for my beautiful wife and daughter.  I'm thankful for Robin, Sam, Jack, and Stitch who are there for me whether I am right or wrong, good or bad.  And I'm thankful for co-workers, neighbors, and friends who are willing to laugh with me, and cry with me.  Most of all, I'm thankful for the blessings, grace, and mercy given to all of us by our Lord.  

No matter what our struggle is, there are things to be grateful for.  Find those today and place them close to your heart.

Be well and God bless.  Tom

The Holiday Season

The holiday season can be a particularly bitter-sweet time of year for families with special needs.  Most of us grew up enjoying the time of year with its gatherings, and traditions, and pageantry.  We have very strongly conditioned ideas about what things should look like.

That narrative doesn't usually fit into the special needs world.  Tyler does not have the same perception of those important tokens of our perfect holiday imagery.  This is where the clash originates between imagery and reality.  I felt like I owed it to Tyler to share that holiday joy the way I knew it to be.  Actually I felt the responsibility to make sure Tyler experienced more tradition and joy than I had experienced before.  After all, isn't my job as a parent to give my child more love and security than I had ever known?  I want to be the model for which my children learn how to be spouses and parents.

However, reality has it's own plan, and in many ways it doesn't pay any mind to those simple ideals. Rather it demands compromise and understanding.  It requires us to look through the eyes of that special person and rearrange what is really important.  This is often a sad undertaking.  Its hard to let go of how we want things to be.

As a youngster Tyler seemed to enjoy Christmas.  We have old video footage of him ripping into gifts or screaming gleefully at a new toy.  One such time was when Santa brought him a ball pit and he ran straight for it and lunged in amid squeals of joy.  But as we have learned so often happens with autism, he became less interested in new things as he became older. Gifts would often remain under the tree unopened for a week because he had no interest or would become angry when presented to him.  Often the changes in weather and routine would cause him to become more surly and difficult to manage.  Trust me when I say, it is a sobering reality when you have to open your child's presents yourself before taking the tree down.

Those with loved ones with special needs likely know the feeling of WANTING to look forward to the holidays but suddenly thinking about the difficulties it brings with it.  To you I would like to offer this advice from someone who has been through good ones and bad ones:

B-A-L-A-N-C-E.  Tradition, gatherings, and pageantry have their place and should never be abandoned.  They are extremely important to us.  But we have to see them through the eyes of our special loved one as well. Find as many ways as you can to integrate BOTH into your lives.  Evaluate what works during your normal days and incorporate that into your holiday.  Tyler did not do well at other's homes for gatherings but was well managed at home, so we would have holiday parties at home where we created activities and foods that became tradition.  Tyler liked car rides so every year we drove the neighborhood looking at lights with some friends.  If you can manage to have a respite evening with your spouse, find a holiday meal somewhere and spend one evening relaxing.  Find new ways to decorate that are festive but do not threaten the sensory limitations of your special person. Tyler didn't like to open gifts so we began to buy him one special thing to open.  We had to let go of that feeling of "if I don't buy him 10 great things to open I'm a bad parent".

What is important about this holiday, and every holiday, is that there is love.  Love is the greatest gift we have been given and the greatest gift we can give to others.  If we can be together, and we can love each other as a family in our own special ways, we have gifts that are so great that no wrapping is necessary.

Be well and God bless.    Tom 

"Tired"

Good Evening!

I had a chance meeting this week with parents of a special need boy.  Their story was amazingly similar to our story.  As we talked they were very open about their feelings, one of those feelings being that they are "tired".

"Tired" in this context has a particular meaning.  It means "I've fought so hard for so long.  I don't sleep like normal people.  I don't go to the doctor like normal people.  I can't really complain to anyone because nobody understands.  I feel like this is going to be happening for the rest of my life and I'm losing hope for my future and their future.  I'm worn out from the anxiety and the worry for my special needs person.  And worst of all, I can't let my emotions show because I'm afraid of what they sound like".

This kind of tired is a description of mental, physical, and emotional exhaustion.  This was my experience for perhaps the last 3 - 5 years before Tyler moved into his new home.  At the time I thought it was just a thing to deal with.  Now I realize it was a serious warning sign.  A SERIOUS warning sign that must be dealt with.

When you reach this point you must find help from people that are trained to move you forward.  What follows is my advice on how to do that.

First, ask yourself what are the 3 biggest needs that you have within the situation.  If you are exhausted there are reasons.  List the "top 3".  Unless you identify and acknowledge the problems you cannot work to solve them.  Next, evaluate each need and list who is currently on your team that can or should be helping you with it.  If nobody fits the problem, you know you need to add a resource.  If those who should be helping with a problem are not effective, you need to exercise your options to make changes.  Next, reach out to those resources and clearly express the need and your expectation of what kind of help you want them to provide.  Now you can make a plan for each need.  If possible set some small goals and then some larger goals.  Finally, keep the plan flexible.  Just because plan A doesn't work out, and B burned in flames, KEEP WORKING!  Sometimes a failure points to a different plan for success.

You may be surprised at how this could jump start some positive changes.  It will help you confront your needs openly and express them more effectively.  You will also see that by being proactive and having a plan your attitude will become different.  There is little that is more poisonous to a caregiver than sitting on our hands hopelessly.  If you feel like this has happened, vow to retake control and get a plan in place.

Be well and God bless.   Tom

10,000 Views!

Good Evening!

I am humbled, proud, and honored to report that our blog has reached 10,000 page views. This "Little Engine That Could" effort has found an audience and continues to grow.  When I first started the blog (having never done one before) I didn't know what to expect.  If someone would have told me I would be crossing 1000 views at this point I would have taken it!  

I would like to thank every single visitor to the blog.  Whether you come here to be inspired, to keep up with Tyler's updates, or to read some amateur bad poetry I'm glad you are with us.  And I hope and pray that it has touched your heart in some way.

Tyler is doing very well once again.  At the house meeting this week his staff described him as "having the sillies" lately.  That is such great news.  Tyler wears his heart on his sleeve and when his mood is silly you know he is very happy.  

He also had some of his all-time favorite food this week..........P A S T A!!!

I see this face and smile.  And it reminds me that with faith and hard work all things are possible.  That if you align yourself with the right people and work as a team you can move mountains.  You CAN change your life and your special person's life.  It's never too hard and it's never too late.

Be well and God bless.   Tom

Feeling Not Good Enough

I've heard many wonderful things from people.  "I don't know how you do it" they say.  "You have done an amazing job" they say.  So how is it I can feel that I haven't been good enough??

Being Ty's caregiver I learned to analyze every move I made.  If something didn't go right I made it MY FAULT.  It was a tremendous pressure to put on myself.  Case in point:

We were at Disney in Florida and as we were getting off of the Jungle Cruise (which he did not like) he managed to push a little girl.  Even though she wasn't hurt and her parents were extremely understanding, I was crushed.  I had positioned myself to his rear left to protect the ride attendant who was holding the boat to the dock, and left his front right exposed which is where the little girl crossed.  I had failed to keep him from making a mistake and I had failed her because I left her exposed.  As his Dad I had failed.  It might be easy from the outside to think that point of view is silly, but this is the intense pressure I had placed on myself.

After a while I felt as though I had to be perfect.  His well-being and the well-being of those around him demanded nothing less.  So given that level of expectation there is only two options: being perfect or failure.  That's an impossible standard to uphold.  That's an unfair standard to uphold.

There is no true answer.  As caregivers we are giving everything we have for our loved one.  We never settle for anything but what is best.  My advice is to remind yourself that you do not control everyone and everything.  Mishaps and mistakes will happen to the best of us.  Tell yourself you will apply what you have learned and the mistakes are behind you.  Mistakes are actually great things so long as we learn from them.  Give yourself a little benefit of the doubt and don't let it drive you to depression or dispair.

God bless you.  Tom

Today in America

Good morning!

Today is a very challenging day in America.  There is a lot of emotion.  Some of it is good and some of it is not-so-good.  Such is so many things in our lives.  But I think I have a very important message today for all of us regardless of how we feel right this minute:

Life and love begin at the very core of us.  Everything begins and ends with how we recognize and embrace ourselves.  We have to recognize our amazing gifts and find the ability to give them a voice.  Within our core we must find peace, joy, and contentment. There must be a core faith which sustains us and levels us.

We are also a direct reflection of how we treat others.  We teach our children how to love and how to be loved.  It is by giving them security that we secure our future.  It is supremely important that we treat our spouses as a cherished and respected partner.  The kind of friend we are and the kind of neighbor we are is what we ultimately control.  It is even matters what kind of "stranger" we are.  Do we treat people with kindness when we interact with them every day?

The world is not this big round thing but rather many small things put together.  We have complete control of our own little piece, which is the beauty of it all.  It doesn't matter, nor should it matter, who is in this office, or that office.  What matters....TRULY MATTERS...is that we are the best Mother, Father, Teacher, Poet, Friend, Painter, Brother, Son, Neighbor, that we can be.  THAT is how the world REALLY changes.  We should never look to anyone to solve our problems for us, not a politician, not a school, not church.  But rather we must recognize that we have been given those gifts already and it is up to us to use them. And that we contribute to that political process, that school, and that church.  

We must remember what really, really matters today regardless of how we feel about those things we cannot control.  That faith, love, compassion, and hope are what matters.  These are things we can control and exercise every day.  These are the things that will sustain us through anything and everything.  These are the things that will follow us throughout eternity.

Remember today to begin at the very core of who you are.  Be well and God bless.  Tom 

One Year Anniversary

It was one year ago today that Tyler moved into his residential home. On that day we woke up and waded into the unknown.  

There was a tremendous amount of anxiety knowing that we were making a decision that would change Tyler's life forever. On that morning it would have been easy to have turned the car around a hundred times. We could have just headed for the beach to hide for a while. The loudspeaker playing in my head was switching stations ranging from the "did I do everything I could" channel to the "24-hour guilt" channel. Tyler sat right next to me in the car not able to know or understand what was about to happen. It was as though the world was moving in slowly motion.

The one thing that we had to fall back on was that we had to have faith in the plan that we had so carefully developed. We had to trust that we had made decisions that were sound and coming from our hearts. Thinking this way was the only hope I had of getting through that day. It was the only hope I had to not break down.

So here we are a year later. Tyler has proven that he could be happy in the right home. Our daughter has acclimated to having full run of the house. And everyone has learned to live very different but fulfilling lives.

When we, as caregivers, are about to make tremendously important decisions we have to do our homework.  Decisions should be made with as little emotional interference as we possibly can.  Preparation and sound judgement is everything.  And most importantly once there is a plan we have to have faith and stay the course.

May the next year be as successful as the last.  Be well and God bless.  Tom

Inspiration is Everywhere

Good afternoon!

I've written many times that we have to keep our eyes open because there are inspiring people everywhere.  And not every lesson for us comes from other caregivers.

Case in point was my flight home last night.  After a very, very long day of working and flying I boarded the last 75 minute flight for home.  A few minutes later a lady sat next to me looking about as weary as I was.  I joking asked her if she was going to cause any trouble during the flight and she smiled and said she would consider it but its really too late at night to get too out-of-hand.  With that we introduced ourselves and began a chat which wouldn't end until we reached our destination gate.

As we took off our conversation had gone from where we spent the week, what we do for a living, and then our families.  As usual I told some of my favorite stories about Tyler and our experiences especially over the last year.  To her credit she managed to stay awake through them all.  I can't tell you for sure how much of an impression I made on her, but hearing her story made quite an impression on me.

After listening to my experiences and stories she explained that she is the Mom to 2 extraordinary children.  Each one with the strength to pursue their passions in life.  The pride in her voice was unmistakable when she described how both of them developed into successful and contributing adults.  What makes this so inspiring was the fact that she was forced to raise her children alone after the sudden passing of her husband.  Through such unbelievable loss she and her children banded together and not only figured out how to survive, but how to live fulfilling lives.  She continued her own education and now works to prolong the lives of people suffering from cancer.

As she told her story, so many things resonated through her words.  We have to live our lives without guarantees of any kind.  And no matter what does happen we have to figure out how to always move forward even after getting knocked backward.  And perhaps most importantly that we model the right messages for our children.  

Sometimes all of us, regardless of our circumstance, need a reminder of messages like these.   As I always say, we have to LISTEN to the messages around us all the time.  If I had just thrown my headphones on and ignored everyone I would have never had the honor to meet such an amazing person with so much poise, grace, and determination.  It made me step back and think about how I want Samantha to view me as her Father.  

Be well and God bless.   Tom