RIP William Christopher

I grew up watching MASH and still enjoy the reruns after all these years.  One of my favorite characters was Father Mulcahy for his gentle and human demeanor.

As it turns out, we had a lot more in common than I thought.  Mr. Christopher was the father to an autistic son, and spent much of his time as an advocate for autism awareness.  He also wrote a book about his own experiences called "Mixed Blessings".  

William Christopher did things to try and raise awareness as far back as 30 years ago when there was even less knowledge than there is today.  

Thanks you sir for your contribution to autism awareness.  RIP

Your Gift

I believe that EVERYONE has a gift.

As a society I believe that we have learned to focus more on personal gratification rather than finding the gifts that we have been blessed with.  Those gifts are the very things that we can use to not only be personally happy, but to bring joy to others.  

My daughter likes to dance.  When we attend her recitals we are not expecting that the young girls are going to be the Rockettes, but they are pretty darn good.  When they stand on that stage they are smiling and stepping and their spirit ripples through the entire crowd. Whether she realizes it or not she is using her gifts of a beautiful smile and coordinated feet to make other people happy. 

I believe that when a painter does a picture it is a piece of themselves that they are laying onto the canvas.  It is their emotions that blend with the colors.  It is their imagination that creates every line.  They are willing to allow that piece of themselves to be placed directly in front of them as though staring straight into a mirror, and then exposing that image to everyone else.  

Writing is no different in that regard.  Or singing.  Or playing a sport.  The person willing to use that gift is assuming the risk of "failure" in order to do the thing the were called to do. These are not the only gifts however.  For some people their gift is to make other people laugh or smile.  For others they may have the gift of telling great stories.  Others may be gifted at being compassionate and caring for others.  But we need to ask ourselves two very important question.  First, what IS my gift?  And secondly, am I using that gift to bring happiness to myself and others?

I think of my painter friend Tom.  He has a tremendous talent for bringing an entire story to life with a single image.  You are not just looking at his subject, but you can feel yourself being in that very place.  Tom obviously has taught himself to translate his emotions and vision onto a plain white piece of paper.  But what impresses me even far more than that is the joy he receives by placing that work into someone else's hands.  We have 2 of his paintings and they mean the world to us because we know the heart that they come from. Right now he is working on a collection which will be auctioned off for a local charity benefiting special needs families.

The point is, in order to make the world a better place we have to use the gifts we have been given to contribute the best way we can.  We have to share our knowledge to enhance someone else's life.  If you share your gift with others, you can never go wrong, you will never fail.  Most importantly, you may touch someone's life in ways that you can never fully understand.

Be well and God bless.   Tom

20,000 Views

Good evening!

Today our blog surpassed 20,000 page views.  That is a number that simply blows me away. I can only hope that within that large number there have been people who found a greater sense of hope.  Maybe there were a few people who felt less alone in their struggles. Hopefully it made a lot of people smile.  I especially hope that the posts cause readers to think in different ways than they did before.  

My goal is that someone out there was better off because of something they read.

Thank you all so much for being a big part of what happens here.  God Bless.  Tom

Merry Christmas Eve

Good Evening!!

We were so thrilled to get to have dinner with Tyler tonight.  He looked very healthy and was just as happy to see us as we were to see him.  As usually we spent about an hour with him over some dinner (this time it was some pizza and fries!).  Everyone got to get some hugs and kisses, and pose for some photos.  

We noticed that each of these visits are getting more familiar and less stressful for him. When he left with his staffer he was smiling and waiving and ready to return to his new surroundings.  He is an adult now and has an adult life.

For us it is so important that he feels the comfort and love of his family around him throughout the holidays.  Regardless of where his life leads him, he is still a beloved part of his family.  

Seeing him smile was worth more than anything you could ever put in a box or envelope.

Merry Christmas to you all.

Christmas Story

Good morning!

Hard to believe it is already Christmas Eve.  Regardless of where you are and how/what you celebrate, I wish peace and happiness for us all.

Our traditions with Samantha have become so much fun and gives us a lot to look forward to.  Every year we circle the neighborhood to see the lights, bake cookies for Santa, and track Santa on the Norad Santa Tracker.  Another tradition is to give Samantha a gift on xmas eve of a new pair of pj's and a movie to watch before heading to bed.  She loves her traditions and they are important to her.  

Today we are tracking Santa (he is currently visiting my friends in China), going to have dinner with Tyler, and then having my nephew and his wife over tonight.  It will be great to see Tyler and make sure he feels our love at Christmas time.  We put together a nice photo collage for him, along with some restaurant gift cards to enjoy his favorite dinners.  We also have some bubble wrap collected for him to enjoy popping!

I was thinking about what stands out as a Christmas memory with Tyler.  I would have to say its the BALL PIT!  We used to take Tyler to an indoor playground to play and his favorite thing was jumping into the ball pit.  He would laugh and scream and swim all over them.  He wanted other people to jump in with him and play.  So at Christmas time we bought him an inflatable ball pit and about 300 plastic balls.  We set it all up the night before to have it ready for him.  We wondered what his reaction would be....

The next morning I had the video camera ready and filmed him slowly coming down the stairs.  He turned the corner at the bottom and looked right where the ball pit was sitting. There was a pause.  You could see Tyler was trying to wrap his head around what he was seeing.  Then....with a scream....he ran straight for the pit and jump in!  The great news was how much he loved it.  The bad news was he would not be interested in anything else from that point on for quite a while!  He took to it like nothing else he was every given.

It didn't take long for the inflatable walls to become a deflated nightmare so we bought him a plastic kiddie pool and filled it up with even more balls.  We kept it in his bedroom and every morning for a very long time we woke up to the sound of a kid jumping into a sea of plastic balls.  There were even mornings that we went over to his room to find him sleeping in his ball pit.  Of course he eventually lost interest but I look back on that very fondly.

To all my readers who care for their special needs children, my wish for you this Christmas is to make a memory that will live fondly in your heart forever.  And to feel the warmth and joy of the season.

Be well and God bless.   Tom

Happy Holidays

First of all, let me say I hope all of the visitors to the blog have a wonderful Holiday Season. May we all find inner peace and see more outer peace in the years to come.

The holidays are hard for Tyler.  And in turn they have always been hard for us.  They come in the middle of his more aggressive and anxious mood swing periods, so they seem to just increase the anxiety.

One of my most important goals as a Dad is to take the good things and bad things about my own childhood and use them to give my children a more well rounded upbringing.  I would like to think that every parent, regardless of their own experiences, want to make things even one degree better for their own children.  This is one thing that makes parenting a special needs child SO HARD.  No matter what I tried to do in so many instances it wasn't possible to give Tyler the sort of experiences I would have liked to.  Or at least the ones that I was picturing in my own mind.

When Tyler was very young, it was somewhat easier.  Tyler's reactions the first 6 or 7 years were similar to typical children.  Add to that he was small enough to physically control in crowds or busy holiday activities.  He seemed to enjoy being social.  The following 6 or 7 years things were more difficult.  Some of the social anxiety began to show up, and there was less joy with gifts and all of those other festivities.  We moved toward more home based activities to make him more comfortable.  The last group of years were the most difficult. Tyler had to be closely guarded, even with family.  Doing festivities outside of the home was incredibly hard.  Tyler would often never even open his gifts because he just wasn't interested.  The holidays were almost something to dread.

To be very honest, this was a very hard path for me to walk down.  I wanted Tyler to enjoy Christmas and New Years like everyone else.  Heck, I wanted to enjoy festivities like other people.  I wanted my wife to feel she was enjoying herself.  I especially wanted my daughter to feel as though she were having magical holidays.  I often got focused on how "unfair" the whole thing was and how I was falling short as a dad and a husband.

I think looking back now this just wasn't true.  No matter what stage in Tyler's development we were in, he still had the important things in his life.  He always had his friends and family loving him and supporting him.  He always had good food and a warm house.  Most importantly, we were always doing our very best to make his holiday special.  

If you are reading this, and you are struggling with how the holidays effect your special needs dynamic, please remember that the foundation of this season is the environment you surround your family with.  Providing every ounce of your heart is what your children will remember.  Giving them laughter and smiles and warmth and security is what they will remember.  Knowing that you loved them and that everything came from your heart is what they will remember.  Doing the absolute best that you can will come through regardless of whether there are 100 gifts and parties, or two.

When our children become adults, and they look back as we do now, they will remember the smell of homemade cookies, or putting cookies and milk out for Santa, or going to Christmas eve church service, reading "twas the night before Christmas", friends and family coming to visit, driving and looking at lights, etc.  Those SIMPLE family pleasures are what they will think of and smile.  

If you keep things simple, family and faith based, and show how much love you have for them....you will have done everything they need.

Bless you this Holiday Season.

Tom

Siblings

This post is dedicated to my beautiful daughter Sam.

Much of what I write about is intended for caregivers, but there is a group of people that unfortunately are somewhat under-the-radar; siblings.  Being the sibling of a special needs person is an especially difficult place to be.

Sam was born when her brother was 17.  Tyler already had a predetermined dislike for small children so we knew that we would have to work hard to protect the best interest of both children.  

We were amazed how quickly Sam instinctively knew that her brother was different.  Even before she turned one and she was pulling herself up to stand against furniture, she wouldn't do it right next to him.  And for the most part, as far as Tyler was concerned, this kept the peace.  Somehow she understood to keep a safe cushion, we helped to act as a buffer, and Tyler exercised as much patience as he could afford.

I want to make this important point:  Sam now exhibits an unusual amount of compassion and empathy for other people.  One day we were at a wildlife park and she was feeding some small animals.  She saw a little girl without animal food and immediately went and shared hers....she never thought twice.  Another time she saw a neighbor friend crying after the last day of school.  As soon Sam got home she drew the girl a picture to try to cheer her up.  I believe that her experience with Tyler has given her that concern for others.  There have been wonderful puzzle pieces added to her picture that have Tyler's colors all over them.

It did not come without a price.  Sam lived in a house where she had to be careful which room she would enter at particular times.  If Tyler entered the room without someone else close by, she would scoot under a table or flee to another room.  This was her reality.  She had to live HER life on HIS terms.  When I was out of town she had to spend evenings with friends or relatives so she would remain secure while Robin cared for Tyler.  Most leisure activities depended on Tyler's condition and was done how he needed them to be done. While this was the smart and safe way to approach things, it also placed Sam's needs as a constant second.  Of course that was never the intention, but it was her reality.  She made tremendous sacrifices for the sake of the whole family.

There were things we did right, and other things that we would do over again.  If I were giving advice it would be:

1.  Make sure the sibling has their own identity and outside interests.  Sam had friends, pre-school, and dance.  Tyler was a big part of her life, but she also had her life in other ways

2.  Make sure there is personal time for the sibling.  I know Sam loved "Sam and Daddy day" where we would get lunch and do things just her and I.  It made her feel special.

3.  Have open and honest dialog with the sibling.  Do not minimize or excuse their feelings. Explain the things that happen in a way they can understand.  This will teach them that their input and feelings are as valuable as anyone else.

4.  Inform teachers of the sibling's home circumstances.  We asked all of Sam's teachers to inform us if they see anything unusual.  If Sam became depressed, anxious, or exhibited troubling behaviors we needed to know right away.  Fortunately, to this point, this has not been the case.  

5.  Do the little things.  You can't say "I love you" too often.  You can't hug them enough. The feeling of being nurtured and protected is pure gold

The sibling is part of the overall dynamic....true....but they are unique individuals that perhaps more than nearly everyone else, need to hear that and feel that every day.

Be well and God bless.   Tom

Puzzle Pieces

Good afternoon!

We have all seen by now that the symbol for autism is the puzzle piece.  I see this as a symbol of the inner complexities for those on the spectrum, as well as the outer challenge of finding that person's place in a difficult world.

By nature I believe that all people are a picture that is made up of many pieces.  We are born with a set of pieces, but we are not a complete picture.  We collect more puzzle pieces as we go through life.  Some are bright and colorful, while others might be darker.  But like a puzzle, EVERY piece is important and the picture cannot be completed without them.  Some are so important in our lives that they become the corner pieces that frame the entire picture. I believe when we have close relationships or relationships with great impact, whether for better or worse, we add more pieces.  

Tyler is made up of many pieces as well.  So many people may not realize how much they have contributed to his picture.   He has a very unique personality which he brought into this world all by himself.  But there were others who gave him pieces through their love for him, or their tremendous talent to help him, or by just being by his side.  

For those of you reading this....parents, grandparents, siblings, teachers, therapists, friends, nurses, pastors, etc...you are all a piece in someone's puzzle.  When you show love and compassion you are adding colors to their picture.  

Living with and working with someone with special needs is a labor of love.  I've yet to hear anyone say they have purchased a yacht with the abundance of money coming from it.  The hours are long, the pay is low, and the job can be hazardous. But we don't do it for money do we?  Or for pats on the back.  Or for Nobel Prizes.  We do it because a person needs our help.  We do it because we believe that no matter the circumstances every person deserves to be treated with dignity and respect, and have their basic needs attended to.  By doing this we add very important pieces to their puzzle.

Tyler has added incredible colors to my picture.  Many of them are amazing and bright, while some of them are darker and swirling.  But there isn't a brush stroke that I would change.  

Be well and God bless.  Tom 

Doing the Right Thing

There are times in your life when you have to stand your ground for what you believe in.  And there are times when doing so means you have to stand alone.  There is a saying that goes something like:

What is right is not always popular, and what is popular is not always right.  

When you are dealing with a special needs situation this can be a very important thing to remember.  Let me pass along this story as an example:

Tyler has a shunt which keeps fluid pressure from building up around his brain.  The shunt is designed to allow fluid to slowly drain down a tube into his abdomen.  It's basically a pressure valve that opens under pressure to relieve the fluid.

One day Tyler was showing signs that his shunt was not operating properly.  He was cocking his head back, wincing, and grinding his teeth.  He also wouldn't turn his head very much.  I was called home from work and by the time I arrived he was unconscious and would not awaken.  We called the hospital and alerted them he was coming in.  Once he was evaluated we were told that the anesthesiologist refused to prep him for surgery due to Tyler eating some applesauce a few hours before that, which increased the risks.  We were told to GO HOME and come back in the morning.  I was livid.  There was no way, no matter who told me to, I was taking an unconscious boy home.  He was in trouble and I knew it.  

We refused to budge.  The nurses felt helpless and the anesthesiologist refused to see us. It was me against the establishment and the stakes were too high to back down.  The only thing I could do was to call our neurosurgeon and plead for his help.  He is one guy I knew we could trust.  I was in tears when I told him I was stuck.  When he heard the whole story he lit up the hospital staff in a BIG way.  Within minutes he was being prepped for surgery. As usual Tyler recovered fully and quickly.

Some months later I talked to the neurosurgeon and asked (off the record) what would have happened if I would have taken Tyler home as I was told.  "Likely", he said, "Tyler would have been in a coma or dead by morning".  

I've not always been right....far from it.  But when I knew in my heart of hearts that I was right, and Tyler needed me to be, I stood my ground.  And really, I was standing his ground for him.  I'd rather have been wrong and Tyler be in less danger than I thought, than have lost my son listening to everyone else.

I think this is a good lesson for our lives in general.  Do what is in your heart and if that flies against conventional wisdom or isn't popular, don't let that stop you.  Because in the end, after all is said and done, if you can look at yourself in the mirror and know you always did what you felt was best, then the rest will just fall away.  Anybody can do what is popular, but it takes a special person to whats right.

Be well and God bless.   Tom 

You Might Be a Special Needs Parent

Good evening.  This is a test to find out if you are indeed a Special Needs Parent!  (Done in the style of a famous performer...)

If you have an honorary degree in patching drywall....you might be a special needs parent

If its been so long since you've been to the doctor that they thought you were dead.....you might be a special needs parent

If you call 9-1-1 and they immediately refer to you by name....you might be a special needs parent

If "going fishing" to you means retrieving something thrown into the toilet....you might be a special needs parent

If there is currently a food item stuck on your ceiling...you might be a special needs parent

If the bags under your eyes have to be checked in at the airport....you might be a special needs parent

If a special dinner out means supersizing your drive-thru meal....you might be a special needs parent

If you tell stories that sends your therapist to HIS therapist....you might be a special needs parent

If the question "can't you just get a babysitter" makes you reach for a bottle of wine....you might be a special needs parent

If a good night's sleep comes as often as Haley's comet....you might be a special needs parent

If you consider 5 minutes in the bathroom as your "me time"...you might be a special needs parent

If you fear a full moon like a vampire fears sunlight.....you might be a special needs parent

If you know where the exits are as soon as you enter a room....you might be a special needs parent

If you ever had a bruise so big you gave it a nickname....you might be a special needs parent

If you watch "Cops" just to see the cops at somebody else's house for once....you might be a special needs parent

If your child thinks the house is "clothing optional"....you might be a special needs parent


And most of all...

If you can find a little humor and light in everything you do, and if you love your special person without fail and without conditions, and everything you do is dedicated to the well-being of your family......you must be a wonderful special needs parent.

Be well and God bless.   Tom

Rain Man

Good Evening!

One thing that I have been asked many times over the years is if Tyler has any special skills like "Rain Man".  The movie happened to be on tonight and it was astounding to realize it is nearly 30 years old!  For as limited as our knowledge of autism is today, I'm pretty impressed by the portrayal from that long ago.  It also means I'm getting OLD!

Now, back to the question.  Raymond was actually an "autistic savant".  In times past this was known as an "idiot savant", so thank goodness for some political correctness. Interestingly about 10% of the autistic population has a specialized ability which would by definition make them a savant.  In the non-autistic population this is prevalent in less than 1% of people.  To my knowledge there is no known explanation for this.  It shows that we really do not know much about how the autistic brain functions.  Tyler never exhibited any particular savant tendencies.  But at the same time, there were stark inconsistencies in his skills.  For example, Tyler could shoot hoops with a great deal of accuracy, he could do multiple shape puzzles with relative ease, and yet he would often forget how to get from one room to the next.

I saw a great deal of Tyler in Dustin Hoffman's portrayal.  And I saw a fair amount of myself in Tom Cruise's character as well.

Ironically, Tyler and I touch foreheads like this as a sign of love and respect for each other. He is no longer comfortable with hugging but he has always been comfortable with this. 

During the movie you watch an interesting dynamic...Raymond doesn't change a bit, he is what he is no matter what, but it's Charlie that DOES change.  Charlie becomes more willing to come into Raymond's world instead of trying to force Raymond into his.  Where Charlie hated trivial things in the beginning, he learns to understand the importance of them by the end.  Charlie goes from living for his own agenda to making decisions that are selfless and hard.

And there are the funny parts too.  I enjoy watching the People's Court (its my daily guilty sin) and if I am running late my wife will mock me..."they are making legal history Ray...LEGAL HISTORY!".  

There are sad parts that really hit home.  Charlie teaches Ray to dance and begins to feel this tremendous connection, so in the end he asks Ray if he wants a hug.  Ray reacts extremely defensively and Charlie is abruptly reminded that there are limits to even the good moments.  This is an amazingly accurate depiction of the relationship between caregiver and autistic person.  The target constantly moves and you can never become absolute about anything or else you will be snapped back to reality.

If you happen to have the chance to watch Rain Man I would encourage you to do so, and carefully watch how Cruise's character changes and evolves.  As a caregiver I promise you will see yourself in more spots than one.  Also try to find some takeaway items.  For me it is a reminder that my job is to help Tyler grow and be as secure as possible, but that I cannot CHANGE his true makeup.  I must also continue to grow and understand his needs and see the world from his point of view.  

Be well and God bless.

Tom

 

Baptism Today

All I can say is "WOW".  I don't even know where to start.

I've not been to a lot of different churches.  I have, however, seen very large mega-style churches, small churches, and even the Cathedral at Notre Dame.  I have never been more genuinely impressed by a church than I was today.  Red Lion Zion doesn't have fancy pews, or a coffee shop, or a pastor who drives a Jaguar.  It struck me as a modest dwelling that has just what it needs but not much that it doesn't.  What it does have, in an overflowing abundance, is HEART.  I saw a congregation full of people that were there because they believe in fellowship in the purist sense.  Each one sat with open hearts and minds to receive the grace of God.  The Pastor, who I am honored to call a friend, included and engaged every person in attendance.  His message was simple and straightforward, and easily relate-able to what is important.  There is an obvious passion he feels toward his message and those he is delivering it to.  I hope he considers this statement as the high compliment I intend it to be: he is serving all folks, even those who otherwise might not feel included, and being a true leader by example.

Today we arrived a little early, with my in-laws there as well.  The church prepared an area just off to the side of the sanctuary that would be obscured from Tyler's view most of the service.  We listened to some music, sang some hymns, and listened to a terrific quartet. Toward the end of the service Tyler was brought to the front to be Baptized.  Pastor Dave talked about how exciting it was to represent Tyler's dedication to God.  He talked about how it may have a different meaning for Tyler, and as his brothers and sisters in Christ we are accepting our role in nurturing and loving him in his journey.  Tyler smiled as he was anointed and gave himself some applause as he returned to his seat.  Many people wiped tears from their eyes as they watched him bask in the love that was around him.  It was a powerful experience.

After the service we got to spend some time with Tyler and get some photos.  He was very happy to see us and appeared very content to stick around for a little while.  Those pictures are below.

On behalf of Tyler and our entire family I would like to thank Pastor Dave for working so hard to make this experience happen just right for Tyler.  Words cannot express our gratitude.  I would also like to thank Jeff B for coming to be with Tyler and his peers today, we felt that to be a heartfelt gesture.  To my in-laws who have always been there for us at every step.  And to the entire congregation who cheered and cried with us today.  It is a day we will never forget.

Be well and God Bless.  Tom

A Special Message for Tonya

Good afternoon!

It seems over and over I talk about how there are special people that cross our paths every day.  It's really a matter of whether we have our hearts open enough to find them.

Today during Tyler's baptism (more on that in the next post) I noticed a young lady who seemed especially touched by the ceremony.  I don't think I can adequately describe it but she appeared to have a very personal cord which this had touched.  After the conclusion of the service I found her sitting with some family enjoying some refreshments in the church basement.  I had to approach her even though she didn't know me from Santa Clause.  I won't forget our brief conversation and this message is for her and so many other good folks like her:

I'm humbled to know that this blog means so much to you.  The feelings that you have right now about your child's situation is the very inspiration for me to continue on.  My wife and I have lived through the very heartbreak that you are experiencing now.  YOU ARE NOT ALONE.  You might feel terrified about what the future will hold.  Your child becoming older, more aggressive, and less engaged is not due to anything you have done wrong.  But it hurts.  It hurts to feel as though your own child is rejecting you.  It hurts to be angry with no one to be angry with.  You HAVE to remember that YOU ARE NOT ALONE.  Trust that every time you need to find more strength that it will be there somehow, some way.  And every time it seems like things get too heavy to carry, someone will help you pick it back up.  

Every time you feel like you are struggling I want you to do these 5 things:

• Remember your faith.  It will not judge you, leave you, or turn its back on you
• Lean on those who are there for you.  Do not consume yourself with those who are negative or make your situation more difficult
• Breathe.  You have to find ways to mentally refresh yourself even if its 15 minutes a day
• Give your feelings a voice.  Don't be afraid of them or deny them.  You may be surprised that things begin to change when they are out in the open.  
• Ask for help.  Be someone's squeeky wheel.  The more involved you feel the better you will feel.  Remember nothing changes unless something changes.

Bless you and your entire family.  Don't lose hope.  There are many of us fighting the good fight right along with you.

Be well and God bless.   Tom

Tyler's Baptism

For anyone that has followed the blog, you know I will write about any subject when it feels relevant.  Some of my thoughts and opinions may not be to everyone's taste, but I'd like to think that I am fair and honest about my feelings.  Even when the subject is sensitive.

I am very proud to say that Tyler will be baptized this Sunday.  We will be there with some of his family members to show our support as he and his church community confirm his walk with God.

Not everyone would agree with this decision, and I respect that.  There would be those who would argue that Tyler cannot understand what this means, so it should not be done.  Or that Tyler is already a Child of God and that baptizing him is not necessary.

While it's a personal decision, I would like to offer our explanation publicly.  Tyler has found many new ways of living over the last year.  One of which is that he has become a member of a wonderful church.  When I say "member" I mean like a FAMILY member.  He is respected and accepted for who he is.  He is loved and encouraged by his Pastor and congregation.  They have no desire for Tyler to merely "attend", but rather they insist that he be a joyous addition.  What an amazing gift to have a Pastor and congregation that are spiritual leaders for our young man.  I can think of nothing more appropriate than to have Tyler stand in front of his church community and receive the Lord, even if it is in a symbolic way.

Another point is that we don't truly know what Tyler fully understands and what he doesn't.  I can tell you that he understands that he is in the presence of love and grace when he is with his church family.  I can tell you that he feels his church is a special place.  Whether he "understands" all of the meanings, he certainly understands the feelings.  For us, this is more than enough reason.

Do I already feel Tyler is a Child of God?  Absolutely.  And there is nothing wrong with a Child of God standing in front of those who love him and confirming it.  God has smiled upon Tyler many, many times and this Sunday will be no different.

Be well and God bless.  Tom

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

Free Concert

Good evening!

Tyler's residential agency is sponsoring a concert where there will be great music and fellowship.  There will be great accommodations for special needs folks and caregivers, but everyone is encouraged to attend!!

Love and prayers to everyone involved in such a wonderful event and ensuring that all of our community can attend.

When I see this event it reminds me how much better our world is when we are united.  How much kinder our world is when we work to care for those who are truly in need.  How beautiful our world is when we give what is in our hearts rather than being divided by hatred.

Be well and God bless.  Tom

Introducing CAN

Good Evening!

I have been very humbled by the numbers of people worldwide that this blog has reached. As a caregiver for 25 years, and gotten to know many other parents along the way, it has become clear that there is a gap between caregivers and agencies.  My personal belief is that with money and personnel at such a premium, the resources must go directly to the care of the children.  Unfortunately the result is that this leaves parents to feel their way through the dark.  This can cause caregivers to become frustrated and children to miss out on the level of care that they desperately need.

With this is mind, I have founded the Caregiver Advocates Network (CAN).  The mission is to narrow the gap by placing important information on the website www.mycaregivers.org
The immediate goal is to use the website to create a directory of service providers in the local area so caregivers can more quickly identify who to reach out to.  Another goal is to create meetings with caregivers to find out what information and services they are in the most need of, and then to take action to post the answers.  Also on the immediate list is to attend agency meetings and symposiums to represent the caregiver point-of-view.  

The blog will continue to run with posts specific to Tyler and our family's experiences.  The website www.mycaregivers.org will be centered on advocating for the caregivers of the local area.  There is also a link off of the website to reach Tyler's blog to make it more convenient.

Again, thank you for your support and please feel free to visit the website as well!

Be well and God bless.  Tom

A TRUE Spooky Story

Good afternoon.

What I am about to write is 100% the way it happened.  It's a spooky story, especially for someone like me who doesn't believe in any of that kind of stuff.

Everyone who reads this blog understands that walking with Tyler has always been an important activity in our lives.  Not only is it fun, but it gives us all some important exercise as well as gives Tyler a positive outlet for aggressive energy.

About 20 years ago we lived in a house that had belonged to my Grandparents for many years.  It was in an older neighborhood that wasn't suitable for walking necessarily.  But there was a very large and very old cemetery with a gate right at the end of the street.  The cemetery is so old that there are people from the 1700's in it.  

Now this might seem like a strange place to take walks but we enjoyed it.  We would often look at the names and dates on the markers (we even came up with ideas for baby names there).  The paths were always empty and we could walk among the old trees and monuments.  Our family plots are on the other side of the cemetery so we would occasionally stop and see my Grandparent's markers.  But mostly we just walked the perimeter of the cemetery and enjoyed the quiet.  At times we even took the dogs over with us so they could run and pretend to hunt squirrels.  My Grandpa would walk with me when I was very young and used the dates on the markers to teach me how to do math quickly in my head.

One day we were walking with Tyler as we had on so many occasions.  We were doing our usual route which took us past the area where our family members are buried.  But as with so many other times we were not planning to stop at our headstones.  To this point we had never, ever seen any indication that Tyler had any notion as to that area holding any particular value and I am also dead certain that he has no concept of what a cemetery is or anything like that.  As we approached the EXACT row that contains my family members, Tyler looked in that direction and stopped COLD.  He stared in that very direction for a few seconds.  Suddenly he smiled and ran with open arms towards that area in a manner which I have only seen when he would recognize someone he knew very well.  Very quickly, I'd say about 5 - 10 steps later, he lost his smile and slowed to a stop.  His arms slowly dropped and he blinked a few times as though whatever he saw had suddenly dissolved with the breeze.  He continued to stare in that direction for just a moment more and then turned and walked back to the path.  

We had never seen Tyler react that way in that spot ever again.  Since that day he is as indifferent to that spot as he would be with any other strange spot.  So on that day, at that very spot, what or who did he recognize?  His Great Grandmother, who was alive for the first couple of years of Tyler's life, is resting there.  She loved him and felt deeply sympathetic toward him.  Did she come to check on him, tell him one more time that she loved him?  

Only Tyler really knows....and as always....he ain't talking!