What We Remember

I recently read about the death of an old friend of mine named Wayne from my bowling days.  Wayne was significantly older than me, but our personalities seemed quite compatible.  I even remember attending an Orioles game with him a long time ago.  What I remember most about Wayne was that he was just easy for me to get along with.  He always seemed to be in a good humor, always complimentary of his teammates and opponents alike.  I'm certain that he was many things to many people and had many facets to his life, but the one thing that stands out for me is how he treated the people around him.

Months ago I had written a post about an even closer friend that I had lost named Ronnie. Ronnie and I bowled together for so many years, went to baseball games, and NASCAR events.  While I remember those experiences very fondly, it isn't the first thing that comes to mind about our friendship.  What I remember first is how he laughed so easily at things.  I also remember how we could have serious conversations just as fast as we could have silly ones.  I remember how he loved to hear Tyler imitate professional wrestlers and he would laugh his hearty laugh.  After all these years I can still see that like Ronnie was standing here now.

One of the people closest to me as I grew up was my "Pop", who was my Mother's Dad. Pop was a man who's body was older than his years.  By the time I was old enough to begin to understand the world he was already limited by his health.  What Pop and I did do a lot of was walking.  This seems ironic now since this was what Tyler and I did together for so many years as well.  In the grand scheme of things I wasn't around for the majority of his life.  But what I remember is how he spent so much time with me.  He took the time to teach me things, and talk to me about things.

There is an extremely valuable truth in these memories.  The most important legacy we leave is how we treat other people.  Think about anyone that you have lost or have been separated from and ask yourself what the very first thing is you remember.  It will most likely be a laugh, a smile, or the feeling you had when you were with them.  It won't be how much money they had, or trophies they won, or the car they drove.

When we leave this earth, our money (if we had any) will be spent elsewhere.  Our house will likely be sold, our car will eventually break down, and our trophies will turn to rust.  But what will remain is the memories that people hold of us.  We will be remembered for how we loved those around us.  We will be remembered for how important we made those around us feel.  Did we make people smile?  Did we make people around us feel safe and important?  What will someone's first memory of us be?

We all must think very seriously about the memory we will leave behind.  Tomorrow is never a guarantee, so TODAY is the day.  Put your energy in the simple things.  Give away all of the things that are so valuable and yet free; your time, your attention, and your heart. When everything else fades away, those are the very things that will live on.

Be well and God bless.  Tom

So Many Thanks

Good evening!

I feel compelled to take a moment and thank the many people who have opened up and offered their feelings on the blog.  When I'm writing I compare the experience to standing on a stage where you cannot see the audience because the lights are pointed straight at you. So I can't gauge the reaction of the people who are in front of me.  Obviously I'm hoping and praying that it is reaching someone and making someone's life a little bit better.

I write the blog for four very important reasons:

1. I want to honor Tyler.  He is my son, my "brother", and my hero.  His charisma and personality is larger than life.  This blog puts his beautiful face, and story, and brings him to life in California, China, Russia, Canada, and many points all over the world.  While he is securely cared for in his home, he is able to reach people everywhere in the world.  I think that is a truly awesome way to tell him how much I love him.

2. Someone may be uplifted by our story.  Every time someone nods their head in agreement because they totally relate to what we have gone through, it has touched them. If the blog encourages caregivers to evaluate a situation and strive for positive change, it is all worth it.  If someone out there in any type of situation says to themselves "if this guy and this family can find the strength to move forward I can too", then the blog is doing what I hope it can.

3. The more people talk about autism the more it comes out into the open.  That is the ONLY way things change.  Things change when people speak up.  I can tell you without any shadow of doubt that Tyler's services would have been much different had we not spoken up for his needs.  We cannot sit back and hope things will change.  The squeaking wheel gets the grease after all!

4.  It is therapeutic for me to write here.  Writing is a great outlet for me, as it allows me to relay my feelings, good or bad.  I surely can't draw, can't dance, can't play piano....

Lately the feedback has been very kind.  I'm humbled to hear the emotional responses that the blog has encouraged.  To hear people opening up and sharing their feelings with me is the very inspiration that drives me to write more.  

So to everyone who has said they have laughed with me, cried with me, and related to my writings, thank you.  Thank you for reading and sharing our story.  Thank you for allowing Tyler to take his journey around the world!

Be well and God Bless.   Tom

Team Tyler Hall of Fame

Our family has benefited greatly from being surrounded by very loving and caring people. I've often kidded that we have a "Tyler Hall of Fame" which is a collection of those people who have given of themselves in selfless ways.  Then I thought it would actually be nice to occasionally highlight one of these folks so that they might get the recognition that they so desperately deserve.  And while many readers may not know who the inductees are, I would hope it serves as an homage to someone that you do know, or that it may serve as an example of the wonderful people that are out there.

Today's inductees are my in-laws, Pam and Andy.  

Its important to remember that autism awareness and the general awareness of many mental health issues is NEW, relatively speaking. In my in-laws's generation PTSD was considered "battle fatigue".  Even in my generation children like Tyler were kept in separate schools or classrooms located away from other kids.  This lends itself to older generations being less accustomed to how special needs are treated today.  

What makes my in-laws special is that despite growing up in a much different generation, they opened their hearts to do whatever they could to help.  They worked hard to learn as much about Tyler as they could.  They have never stopped supporting all of us regardless of what we struggle with.  Tyler always knew that he was deeply loved when he was with them. Whether we were having a holiday dinner, or riding the Tower of Terror at Disney World, they have always been right there for him.  They have contributed in more ways than we could ever begin to count, and we would not have been the same without them.

Let us never forget that perhaps the most important people in our lives are the ones that love us even when they don't have the first-hand experience to relate to what we are going through. The ones that refuse to shy away especially when things are hard.  The ones that would never miss a happy time for all the world.

So today we honor Pam and Andy and all of those family member and friends who love unconditionally.

Small but Mighty

In my own personal life's journey I have struggled with my faith.  It's not an easy thing to admit but it's true.  I especially struggle with the suffering that we experience in this world. It breaks my heart to see war, starvation, and loss.  I don't understand why there are so many children who live in desperation.  I don't understand why so many people are mentally ill and become abandoned and abused.  I've questioned Tyler's role and my role in the entire grand scheme.  

So today as we sat and prayed in church, our pastor invited any of us who had any particular need, or knew of someone with a particular need, to lift it before the congregation. What I heard was very real anguish and pain.  Many of those who spoke up had experienced challenges that seemed brutal and devastating.  I was unable to wrap my head around it all.  And being that this is my biggest area of weakness, it was especially hard to hear.

Then I remembered an offhanded comment I heard at the very beginning of the service. Seeing that the cold and snowy weather had kept the attendance to a modest level, a church musician began by smiling and saying "we are small but we are mighty!".  When I looked around I saw how truly appropriate this statement was.  These good people described such incredible need and yet they were still standing.  They weren't cowering in a corner or curled up under the covers, but rather they were sharing their story and facing their challenges.  They were reaching out to each other and for each other.

The support, love, and faith among this small but mighty group was palpable.  You could FEEL the compassion surrounding all of us.  It felt as though no matter what roadblock was in front of each of us, we had the collective power and grace to persevere.  

I may never understand why we experience suffering, and it may never get any easier for me to accept, but I can say that I learned some valuable things from my new friends today.  I l learned that what matters is that we keep moving forward.  Just because we cannot yet see the light at the end of the tunnel doesn't mean it isn't there.  And no matter how dark things may seem, we can all link arms and walk together until the light returns.  

Yes ma'am, we are small in number but we are mighty at heart. 

I'm Angry

I'm angry.  And when I'm angry I don't pull punches.  

Autism Speaks placed an article on Facebook which was actually a post from a blogger who is the Mom of an autistic child.  It addressed the difficult issue of placing her child in a home and knowing that it was a matter of "when" and not "if".  The blog was beautifully written and beautifully honest.  

And then Autism Speaks fails miserably.  How?  It allowed comments to be placed uncontested below the article.  Many people commented how they identified with this Mother, and how they too have to face the same inevitability.  But other comments where much more negative.  Terms such as "I would never abandon my child" and "I will keep my child with me as long as I am breathing" were far too common.  Some went so far as to shame parents who have made that choice.

Hold on Tom, you might say, you preach that we should be free with our feelings!  And that is 100% true.  BUT....Autism Speaks has an obligation to dispel the very myths which could discourage a family from seeking the help that they need.  They should have (if they were to allow comments) provided counterpoints to those who have a closed mind to group homes.  They should have encouraged proper research and resources to make an informed decision.  Of course group homes are not the answer for everyone, but to allow people free license to "shame" parents who feel it is the right option for them is to ignore their responsibility to people with autism.  

I've let Autism Speaks know that I feel that they were irresponsible in their actions.  I told them that they pledge on one hand to devote themselves to families with autism and on the other hand allowed comments saying that people who place their children in homes are "abandoning" them.  I found myself commenting to these individuals that with the right amount research a good group home is attainable.  I commented that to "abandon" your child is to yourself die and have no secure future for your child.  

I'm angry because it shouldn't be my responsibility to speak up for Autism Speaks.  Isn't that half of their name: S-P-E-A-K-S???   Ugh.

The truth is group homes are a mixed bag.  Some are great, some are good, and some are just not hitting the mark.  There is NO absolute answer.  Anyone who tries to convince someone either way is doing that person a disservice.  BUT, they are worth a tremendous amount of research.  Your case manager can help you to navigate the decision to find out what is best for your individual case.  If anyone is taking the advice of people posting on the internet, they haven't done their own homework.

Autism is winning the war with our children.  Let me say that again:  Autism is winning the war with our children.  Until we get ANGRY and start pushing back it will continue to gain ground.  The enemy comes in many forms:  lack of dollars, lack of understanding, lack of research.  If Autism Speaks or anyone else needs to have the backbone to call BS on someone who spreads false or damaging information, then so be it.  If they want to get angry with me for calling them out, so be it with that too.

The only thing I can imagine that is worse than losing.....is not fighting back.

Be well and God bless.   Tom