Friday, September 27, 2019

Tragedy in Florida

I just saw a story on social media about an 87-year-old grandmother who murdered her disabled grandson.  She was afraid of what would happen to him once she was no longer able to provide care for him.

It would be easy to pass judgement and say "how could someone do that to their own grandson?", but there is a lot to consider here.  Think about the incredible amount of failure that has to lead up to an event like this one.

The disabled man did not have parents who could care for him.  His father had died and his mother was estranged from him.  He lived at a group home during the week and was cared for on the weekends by his grandmother.  

The system must also share some responsibility.  We continually hear about the elimination of benefits for disabled adults.  We also pay caregivers a pitiful salary to care for people who need the most support.  This leads to high rates of turnover and substandard care.  The substandard care easily lends itself to turn into neglect and abuse.

Science shares a slice of the blame pie.  As I've stated in other posts, we have become adept at keeping people breathing, but have fallen woefully short matching that with tools for better quality of life.  

Perhaps grandma knows of instances of institutional abuse, or perhaps the history of the family is so sordid that he would suffer at their hands.  Whatever the case, elements around her caused her to believe that he would be better off in the arms of God than here on earth.  It isn't her choice to make, and I do not support her decision, but I can't condemn her.

If I were old and about to leave this earth, and someone showed me a crystal ball of Tyler being abused and neglected after I was gone, I'd have to think long and hard before leaving him that way.  I'm not sure that most special needs parents wouldn't feel the same way.

Its also heartbreaking to think of how the judicial system will have to decipher this.  She committed murder, and that cannot be ignored.  Hopefully she can be confined to a hospital for her remaining days as opposed to a jail cell.  Maybe the strain of caring for him became too much and she has a medically explainable loss of reasoning.  

It is heartbreaking, but also largely preventable.  To do that we must be willing to look at these failures and be willing to offer more avenues of care for disabled adults.  Within this I also make the same appeal for disabled veterans.  We have to listen very hard to this woman and understand her fears before we can understand the mind of the aging caregiver.  I'm just not sure we have the empathy it takes to do this anymore.

Be well and God bless.   Tom  

Friday, September 20, 2019

The Return of Matty

A few weeks ago I wrote about a terrific young man named Matty.  I hadn't had the pleasure of running into him for a couple of weeks.  Lunchtime is a lot better when cross paths with him.  His attitude and open heart in infectious.

I needed to fill up the gas tank today so I stopped into the local food and gas mart.  As I stood in the checkout line, in walked Matty and his caregiver.  It only took a minute for him to have me laughing.  "Hey this guy is following me around" he said as I shook his hand.  He said they were going to eat there because "I gotta give McDonalds a break!"  He said his goodbyes and bounced on to the next thing.

The cashier commented what a pleasant young man Matty is.  I agreed and said he was one of the most special people in this world.  After all, he has a positive nature that isn't fake or done for show.  He displays a simplistic and natural regard for others, which is a rare and special quality.  

I shared the blog address with his caregiver.  She seemed a little puzzled at first but I think once she sees the blog she will remember that Matty and Tyler have things in common.  I told her that there was an entry about my meeting Matty and being so inspired by him.  He smiled and thanked me again.

Its me that owes thanks to him....for being such a rare and special person that can change the trajectory of my day with a simple laugh together.

Be well and God bless.   Tom

Thursday, September 19, 2019

Sam Update

A quick update on my post from yesterday.  Unfortunately, Sam was not elected to student Senate.  As it turned out, she was among eight students who were running.  The good news is, she was seemingly ok when I arrived home.  She said she was disappointed, and she blamed me for writing a bad speech, but that she was fine.

We told her how proud we were of her for trying and being willing to pursue something she believed in.  We will take her out for pizza tonight to her favorite restaurant in the world to celebrate.  Maybe she didn't win for student Senate, but she is a winner in our hearts every time she does the right thing.

Be well and God bless.   Tom

Wednesday, September 18, 2019

Thinking of Sam Today

You have seen my daughter, Sam, express her thoughts here on the blog.  Well, today I am thinking about her as she attempts a new endeavor.  

Sam came home last week and asked if she could run for student Senate at school.  She was very excited as she explained that she feels like she is a good leader and would be good at voicing the needs of her class.  Her idea was to represent things that everyone could enjoy, regardless of social stature.  She wants a beautiful and all-inclusive school for everyone.  We encouraged her to run and to win!  I asked her what she wanted her speech to say, and helped her put the words together.

Last night came around and she had an emotional meltdown right before bed.  She was afraid she was going to be the one person that wouldn't get elected.  She was afraid that she wouldn't get any votes because she isn't one of the most popular girls.  She was afraid of looking like a fool with nobody raising their hand for her.

I told her how I had been there many times.  In fact, she is braver than I am because I wouldn't have had the guts to run for anything back during my school days.  With years of experience I have come to realize that its more about what I believe in myself than what the masses believe.  But I'm 49, not 10 and trying to find my way.  It occurred to me that the advice I was giving her is true for so many things.  Some of us face tremendous challenges where fear has a grip on us, some of us are caring for loved ones who are facing those challenges and fears, and some of us are trying to navigate even these types of small disasters.  I said...

You know in your heart that you will be great.  You know you want it for the right reasons.  You go in there with your chin up.  Stand there and give the best speech we've got and do it with your chin up.  When the votes are counted, you keep your chin up, win or lose.  If you win, be gracious to those who didn't.  If you lose, be gracious to those who did, and keep your chin up.  Its ok to be disappointed in the result, but don't be disappointed that you were brave enough to try.  Only 3 students in the class dared to try, and that alone makes them all winners.

Of course I'm hoping that when I get home she is walking on clouds.  It would be a great lesson to never sell herself short and to strive for goals that even she isn't sure she can reach.  I'm obviously not wanting to go home to a pile of sobbing 10-year-old.  That lesson will have to be to never give up, especially when you believe you can make a difference.

Either way, my heart goes out to her because I am so proud that she is the kind of person deep down that wants to stand up and be heard, especially for people that can't do it for themselves.  In many ways, its a path of incredible satisfaction and disappointment.  Let's see which one I'm going home to today...

Ahhh....the joys of being a Dad!

Be well and God bless.   Tom

Tuesday, September 17, 2019

Finding Dr. Kofinas

Robin and I had one of those moments.  We were talking about a random Tyler memory and we said those famous words "I wonder what ever became of that person?"  In this case we were referring to Dr. Alexander Kofinas.  

It was 1991, and we had just found out that Robin was type-1 diabetic AND pregnant.  We were made to understand immediately that this was an unfortunate combination and that her sugars had to be controlled as quickly as possible.

I do not say this lightly....Robin did an amazing job getting her sugars under control right away and keeping them in check throughout the pregnancy.  I can't imagine getting a diagnosis one day, going straight into the hospital shortly after, and training myself to live a whole different way of life overnight.  She learned how to eat, how to give herself insulin, and how to test her sugars.  She did this for her baby, and she did it without complaint.  Tyler owes his life to her, and she should be regarded as a hero.

We were referred to Dr. Kofinas as a high-risk pregnancy.  We had no idea what to expect, and being so young we were scared.  Thankfully, Dr. Kofinas was the perfect doctor to go to.  He talked to us as though Tyler were his only patient.  He explained everything to us so we would know where we stood.  He cared.  The caring was what we needed the most.  

Once we were referred out-of-state for Tyler's birth and initial surgery, we lost track of Dr. Kofinas.  I suppose this happens a lot with these situations.  We did think about him and talk about him occasionally when something relative to her pregnancy would come up in conversation, and it always ended in "I wonder where he ended up".

I took a moment and decided to google his name.  I couldn't remember his first name, and honestly wasn't sure how to spell the last name either.  After just a few failed attempts I found a Dr. Kofinas in Brooklyn, NY.  Luckily his website actually posted his resume, and sure enough, there was our hospital in the early 1990's.  It appears he has a practice with 2 locations in New York.  And either he has a picture on his website from when he was 40, or he looks damn good for his age!  

I took a moment and sent him an e-mail starting with..."you won't remember us...but" just so we could say hello.  Even if he doesn't remember anything about us, it felt great to let him know that he made a difference in our lives when we really needed it.  He was patient, compassionate, and supportive.

Many times on this blog, I talk about the importance of placing your trust in good people who are willing to stand beside you through the difficult times.  There has been nothing else more valuable in our journey than having people around us who have loved and supported us.  We didn't realize it then, but Dr. Kofinas was an early lesson in putting ourselves in the right hands.

Hopefully I get a reply from the good doctor and I can thank him for what he did for us all those years ago.  Its important that we remember to do this where its warranted.  After all, these doctors are as human as we are.  They experience disappointments and heartbreak when they lose patients or can't help the way they would like to.  Perhaps being reminded how much he helped us will strengthen him to continue to do the same for others.

So today we salute Dr. of Tyler's heroes.

Be well and God bless.   Tom

Wednesday, September 4, 2019

Tyler Update...Sort of

It appears that Tyler has come out of the weeds somewhat within the last 2 weeks.  I would say we have gone from the fescue to the light rough at the moment.  I will be receiving a more detailed update tonight, which I will post later.  At church he still appeared to be unfocused but smiling and a little interactive.  

The current frustration is trying to figure out WHY this has happened to him.  That question alone is difficult enough, but an equally frustrating hurdle seems to be getting the right people to help him in the first place.

Something I heard from the beginning has turned out to be so true...the treatment options become much more limited the older that Tyler gets.  The ironic thing about "aging out" of certain services, is that mentally Tyler hasn't aged at all.  Even physically Tyler is nothing near a 27-year-old.  And yet this is the criteria which often determines treatment.  Just this year alone he has lost his Neurologist of 20 years because he is now an adult, he was denied an appointment with a psychiatric group because he was too old, he lost my insurance because he turned 27, and we are struggling to have a consultation with an out-of-state doctor because he lost my insurance at age 27 and only now has state funded medicaid.  

Don't get me wrong, the folks I am talking to are normally WANTING to be helpful, but they entire system is just so broken.  Facilities have to worry about getting re-reimbursed, whether they are doing something that would be frowned upon by insurances or medicaid, liability, limited numbers of doctors, and limited slots to schedule patients.  Most of these mental health facilities are also unable to take new patients, or are scheduling months and months in advance.  

The need for services is far exceeding the supply of resources.  This is scary because both factors are going the wrong direction.  The need is growing and the resources, which are already stressed to the point of breaking, are simply being stretched more.

Its easy to throw our hands up and say that the system is broken.  Obviously this is true.  But breaking it into little pieces and fixing them one at a time is how we can make some progress.  There are too many pieces to lump it together and call it "the system".  I will name just a few broken pieces:

  • Not enough pay or training for caregivers
  • Lack of state and federal funding
  • Lack of facilities willing to address the needs of disabled adults
  • Too many people allowed to abuse the current system
  • Lack of education for those family members raising a disabled individual
There is no way on this or any other planet that we can fix all of these issues at once.  BUT, I do believe that an initiative should be set to address one at a time. 

How do you eat an elephant?           One bite at a time.

Be well and God bless.    Tom

Tuesday, September 3, 2019

When I Grow Up

We change so much as life goes on.  Something that every relative asks every child is "what do you want to be when you grow up?".  We immediately think about what profession we want to it a doctor, lawyer, soldier, or whatever.  Before we really understand what life is about we are trying to figure out our career for the next 30 years.  Its no wonder that most people I know who went to college are not actually doing what they went to college for.  A 17-year-old can barely get out of bed before 2pm but we think they will miraculously make the right career choice.

Perhaps we are asking the wrong question.  Maybe the right question is...WHO do you want to be when you grow up?  What kind of a person, friend, parent, citizen do you want to be?  Its a question we should never stop asking ourselves.  

When I was about 5 I said I wanted to be a garbage man (true story).  When I waited for the school bus in the morning a garbage truck came by and the man would wave to me and smile.  He seemed happy enough and it was really one of the few interactions I was exposed to at the time.  At about age 10 I wanted to play first base for the Phillies.  At about age 13 I wanted to be a professional bowler.  Through my twenties I tried many different things but knew there was a better fit for me out there.  In my 30's and 40's I wanted to be a Safety Manager.  At nearly 50 I find myself still wondering what the next decade will bring.

But now I have enough time behind me to look back.  The first question in my mind is not whether I would have made a great garbage man, or whether the Phillies would have won more rings had I played for them.  I don't wonder how many records I might have set on the PBA tour, and I don't even think about the safety record of those I have worked for.  

I think about the kind of dad I have been.  I hope that when everything is said and done that I have loved my children the best way I knew how.  Have I been a good friend to others?  Have I been a good spouse and been willing to become better as time marches on?  Have I left a positive impact somewhere on this earth?  Have I been a good neighbor?  And have I been true to myself?  Those are the questions that I think about now.

It doesn't matter WHAT we are, it matters WHO we are.  If we are compassionate, loyal, and loving to those around us, we have lived a good life.  

When I look at pictures of my wife and children, I wonder what they see when they look back at me.  I want for Tyler to see love, courage, and devotion.  I want Samantha to see love, laughter, and protection.  I want Robin to see love, compassion, and joy.  These are the things I want to be when I grow up.  For those are the things that truly last forever.

Be well and God bless.    Tom