Happy Birthday Buddy

Tyler,

This week you turned 26.  It's funny, I still remember when you were just a small boy.  It doesn't seem that long ago that I walked an 8-mile benefit with you on my shoulders.  It doesn't seem that long ago that you walked next to me through the park.  It doesn't seem that long ago when we were both young and uncertain of who we were and what the future held for us.
Seeing you today was a lot of fun.  But at the same time it is hard.  Its an opportunity for all of those anxieties to come roaring back.  I sense the same thing from you.  You love seeing all of us but you have to keep moving forward in your life.
Just please remember that I love you every single day of your life.  You are never forgotten, and we talk about you often.
26 years old.  You are a beautiful young man with a tremendous heart.  Your courage is what sets you apart from anyone else I have ever known.  Your spirit is no less than amazing.

Tribute to Dylan of Sandy Hook Elementary

**Post was initiated during the Florida school shooting last week**

I always want to be very careful when I talk about current events.  I don't assume that everyone shares my opinions and I certainly don't share the common public views on many things either.  But when something is on my mind, and in my heart, I write.  Its just who I am.

There is, right this moment, an active shooter situation in a school in Florida.  The details are very scrambled, but the overall consensus is that there will be considerable casualties involved.

I wonder....when is ENOUGH going to be ENOUGH?

Plenty of people, like me, will step forward and beg that laws be changed to protect innocent lives.  Most citizens will agree that background checks are an acceptable form of protection.  Many of us will plead that items such as bump stocks and assault style weapons be restricted from those in the general populous.

There is no greater duty as parents and citizens than to protect our children.  There is no amendment, no law, no statute, and no perceived right greater than our responsibility to our children to provide a safe environment for those innocent lives.  To me, there is no debate, we must take whatever steps are necessary to ensure the safety of our children.

Tyler's day program locks down every day.  In order to gain access to the building, a person must be seen and buzzed in.  Of course this does not guarantee his safety, but it helps.  But if someone were to enter that space with the intent to kill, he would be completely at the mercy of fate.  Like the children of Sandy Hook Elementary, he would have no means to defend himself....or even the instinct to do so.  

It is long past the time to wake up on many fronts.  We need to have better access to mental health care.  We have to evaluate our parenting priorities and the amount of exposure our children have to gratuitous violence.  And we have to have common sense weapon protections for innocent lives.  

The facts are undeniable....innocent children die needlessly due to gun violence.  Innocent children die needlessly due to gun suicides.  Innocent children die needlessly in accidental gun discharges.  And innocent children die due to domestic gun violence.  

Dylan Hockley was 6 years old when his life was taken from him.  At THAT MOMENT, this country should have needed no other reason to change.  There should have been overwhelming anger and call to action when Dylan's family was torn apart by violence that could have, and should have been prevented.  

Society failed Dylan and his family, just as they have failed every victim at Sandy Hook, just as they did at Columbine, and so many others.  Our representatives failed them by accepting money from the NRA.  Worst of all we have failed them by not learning our lesson and allowing it to happen over and over and over again.

As Tyler's dad, and Sam's dad, I have questions that I want answers to:  why do we allow lawmakers to be bought by the NRA?  Why do we ignore the rights of the common citizen to go to church, school, and the mall without fear of being gunned down by assault-style weapons?  Why do we continue to reduce funding for mental health treatment?  How is it that guns have been upgraded over the last 250 years and yet the 2nd amendment has not?

If I could tell Dylan Hockley and the Hockley Family anything, it would be that he lives on in the hearts of those of us that believe in the right to live life in peace.  With that in mind, this post is dedicated to him.

If you would like to help or support a safer world for our children...please visit:
www.sandyhookpromise.org

Never Waste Something Special

I realize that some days I go a little bit off topic, but when I get moved by a memory or a thought about something, I enjoy sharing it with the blog readers.

I ran a warehouse in Pa. for about 5 years.  And trust me when I say this, I had NO IDEA what I was in for when I accepted the job.  But I did know that I had a cast of people around me that I genuinely liked and was excited to do good things for.  What was so special was that they made it clear that they believed in each other and that they believed in me.  So from the first day that I took over I felt as though we had something unique, perhaps so unique that it would be a once-in-a-lifetime opportunity.

Shona was my Receiving Supervisor, but most importantly she was the heart of the group.  She was like the mom that a lot of us needed to have, even as grown men and women ourselves.  I'm very fortunate to run into her often, and when we do its as though we never left each others side.  She always told my real wife that she took pride in being my "work wife" making sure I took care of myself, and that I was always okay.  She is such a special person and hard worker that if I opened a business tomorrow I would call her instantly.

Jimmy was the Inventory Control Supervisor and my eventual successor there.  I'm fortunate to say that he also remains a good friend to this day.  Honest, smart, fun, and would have protected us no matter what.

Dave was a guy who was trying to figure out how to take all of the wonderful tools that he had and get them to work all together.  Hardworking, smart, and always with the right intentions.  The kind of guy any business would be proud to have.

Bert.  Oh Bert.  Bert was the class clown of the group.  You would never accuse Bert of working too hard and yet he was there for you every day, and he gave you what he had.  Bert is also extremely smart and an amazing wit.  Behind the rough exterior Bert has a big heart and a kindness that shows up almost every time you talk to him.  If we only cared about productivity Bert would not have lasted very long.  In fact, there was pressure on me from above to replace Bert because his numbers were lackluster.  But I always made the case for him that he was there every day, on time, he cared about his coworkers, his coworkers enjoyed him tremendously, and he could do everything in the building without errors or carelessness.  His value was far greater than simply speed.  Bert never left us.  In fact, when our operation relocated to NJ, Bert worked as long as he could until he was no longer needed.  I will never forget the day we finally told him it was over...he cried.  He cared so much for what he was doing and who he did it for, that he didn't want it to end.

We had other characters like Buffalo Bob, Kim, Deb (who was my enforcer and would have literally pushed me away to jump on a grenade), Ken, Paul (our talented DJ), Darryl (who said exactly 5 words per week), and on and on.  

The point of all of this is, we had a group that truly cared and respected each other.  Each with very different backgrounds and personalities, and yet we looked out for every one of us.  It was the most special 5 years of my career.  What makes me even more blessed was that I KNEW at the time that we had something amazing.  This helped me to make the most of it, and cherish it.  We took every opportunity to have fun with it, and help each other grow.

Hopefully most of these misfits (we affectionately called ourselves "the land of misfit toys) would say that they left that period of time having learned a lot about how people can and should treat each other.  I further hope that most of them would look at those 5 years with the great affection that I do.  

That experience taught me that when you have something very special, make the most of it.  Make it joyous and unforgettable.  It also taught me that each person is different, but no less valuable than the next.  Each person brings something very unique to the table and if you can celebrate it, it can add value to your life.  

I will likely never have a situation and a crew like that again.  But fortunately I have some lifelong friendships that will help me hold it close to my heart.

Be well and God bless.    Tom  

Care by Siblings

I'm about to enter into a sensitive subject.  I hear people say things like "I'm glad my autistic son has a younger brother who can always take care of him" and it really causes me to think long and hard.  

When we became pregnant with Samantha, I admit that one of the things we thought about was that Tyler would still have family after my wife and I are gone.  With her being 17 years younger than him, under most scenarios she will outlive him.  Practically everyone on both sides of the family are older than Ty, so we never wanted him to face a day where there could be nobody left to be family for him.  

This is a selfish thought on my part.  Of course I am hopeful that Samantha will feel that she wants to keep an eye on him someday, but in no way should she be held to that.  She is entitled to her own feelings, her own time, and her own life.  

So when I hear people say that it will be left to the siblings to take care of them, I see this as a dangerous and unfortunate way out.  I think for many caregivers they can't bear the thought of letting go of their child and trusting the system, so they comfort themselves by assuming another child will be willing to pick up the pieces.  Its an understandable thing, after all it is an excruciating thing to think about the day that we can no longer care for our disabled child.  It kept me up many nights wondering how he would manage after I was gone.

But let me be plain on this point....you are neither looking out for your special needs child, or their sibling, if you do not prepare for an independent future for both of them.  Their sibling should not be relied upon to pick up the baton once you can no longer care for your special child.  The sibling has every right to go to college if they wish, have a family, move to another state or country, and decide for themselves how they want to live their lives.  Hopefully this means they will also want to help, and be part of a protective family unit for the special person, but it cannot be a pre-arranged situation.  Because in the end, the odds are being helpful will be replaced by feeling resentful, unappreciated, and used.  

If you have ever made those statements, or you truly believe it is ok to assume that a sibling will take over as a caregiver, you need to stop and have a reality check.  All you are doing is serving your own self and your own guilt.  You are trying to deny the fact that your own mortality will change the course of your special child's care.  You are avoiding doing something that you know will be difficult.  All of this at the expense of the special child and the sibling.

I hope and pray that Sam will always love her brother and want to be family for him until he is no longer here. I hope she wants to someday be willing to be a member of the team that watches over his interests.  But Sam has a life of her own to live.  That will be her choice.  In the meantime we are setting up Tyler's life so that he can live without us if he has to.  

The choices have not been easy, but they have been the right ones for both of my children because I love them and respect them equally.

Be well and God bless.   Tom

My Dream

I believe that it is important for all of us, whether we are caregivers or not, to have a dream for something that we would like to have happen in our lives.  I would like to share mine today.

Having raised Tyler all of those years the one thing that I sorely missed was being able to relax.  It may seem hard to believe, but even after 2 years of Tyler living in his new home and being well taken care of it can still be hard for me to gear all the way down.  Its an issue that I've covered in other posts, but its clear to me that my psyche became so conditioned to run at high gear, that its become a challenge for me to think any other way.  I still have dreams that cause me to panic....dreams about being in a place where Tyler is needing to exit but I can't seem to be able to get him out.  Or there are times where certain situations or sounds take me right back to the worry and hyper-thinking of being a caregiver.  

I'm also very discouraged by our society in general.  It sounds negative I know, but I really do believe that empathy and sensitivity are quickly becoming a thing of the past.  Humans in general are not willing to help take care of their brothers and sisters, but would rather only make sure their own interests are satisfied.  

One place that I find special solace is the beach.  I'm one of those people that seems to find some kinship with the sounds of the waves and the vastness of the sea.  When all I feel is sand beneath my feet and an ocean breeze against my face I become quiet in every sense of the word.  

With all that said, by dream is to have a small place of my own at the beach.  A place where eventually we can retire and spend our days walking on the beach, having a nice cigar, and reading books about things that interest me.  Nothing fancy, nothing stylish.  No Facebook, no politics, no complexity.  Perhaps just living a simple life, maybe a part-time job to remain busy and have a little extra cash.  Every day I will have the warm sun on my face, and not a single day will go by without hearing the sounds of the ocean.

This is what I dream about.  And this is very important to me because it keeps me thinking of how I could spend the latter portion of my years.  

Whatever you dream about make sure you keep it close to your heart.  Don't give up on it and certainly don't let anyone take it away from you.  

Be well and God bless.  Tom  

Poem

You might think that you know me
But you don't
That you will get what I'm doing 
But you won't
My shoes have many miles
And they've seen a hundred trials
But no one seems to see the greatest point

You might think that you see me
It's not true
I only wish that I could
Just relate to you
Nobody is to blame
We just are not the same
I'm not the person that you thought you knew

You say you understand
And that is great
But the things I do
You just cannot relate
I live a very different way
Which consumes my every day
It simply is a caregivers fate

I will do my best and try
To be your friend
But every day I just don't
Know how it all will end
So much I can't control
It all just takes its toll
Theres nothing here that I can depend

Blog Anniversary

Two years ago today I started this blog.  Writing has always been a source of comfort for me.  It allows me to sort things out and streamline some of my thinking.  I've conditioned myself for so long to think fast and yet see things from as many angles as possible.  When I write it allows me to slow things down and put thoughts into perspective.  Sometimes it allows me to express feelings that are too difficult to say any other way.  Writing has been a tremendous help to me getting through a lot of difficult times in my life.

Writing isn't for everyone.  Each person has their own individual outlet device.  Being a caregiver does not mean giving that up.  In fact, it should actually become more important.  What I write and the way I write reflects me as an individual.  It is unique to me.  No matter how many writers put pen to paper, nobody will write exactly the way I do.  This goes for any such outlet, it is a reflection of the individual that is theirs and theirs alone.

I think of my friend Tom who did not grow up as a painter.  It was something that he discovered during a portion of his life when he was ready for it.  Now it is not only an amazing talent that he has, but it is a driving passion in his life.  And even better still, it is the constant love in his life that is there for him no matter what else is happening in his life.  I have never seen him paint a picture, but I have seen him paint beautiful windows into the heart of life itself.  Its like when you listen to a piece of music, close your eyes, and feel it transport you to another place.  Perhaps the writing, or painting, or music takes you back to childhood memories, or to a peaceful place that you have never been and yet can vividly imagine.  

Being a caregiver is difficult.  Unless you are careful you can become so consumed with the other person that these personal abilities begin to take a back seat.  Before long, they could be placed on the shelf never to be used again.  If this happens, you will feel even further away from your own self than ever before.  You cannot lose sight of your own self.

Today, think about what it is you LIKE to do.  Even if you aren't a caregiver and you are reading this, think about what makes you happy.  You don't have to be good at it....being good has nothing to do with anything...you just have to like it.  It can be reading, crosswords, jogging, drawing.  Activities like these have been proven to be healthy for the brain and help reduce the effects of depression.  For caregivers it is SO IMPORTANT to have an activity reserved just for them.  

Remember that each and every day is a gift.  Even difficult days are a gift.  Those gifts are very limited, and in fact we don't ever know how many more we will have.  We have to find wonderful things in each of them.  

Be well and God bless.   Tom