Friday, November 1, 2019

Tyler, You are Missed

We had an appointment this week with Tyler's psychiatrist to continue working on making his life better through medication and other changes.  It does seem that since lowering one of his meds, he has become a little more awake and aware, which also seems to make him a little more interactive.  His aggression has also stabilized, so maybe instead of "being in the weeds", we are simply in the rough.

Sitting in the office with Tyler and other staff, I could see Tyler wanting my attention.  This is the first time in a while I had seen him seek me out like that, so I moved close to him and gave him all the attention he wanted.

It hit me very strongly afterward just how much I miss him.  I'm not talking about in the sense that I miss the everyday interactions with him (which I do miss also), but I miss him in the sense that I imagine people with parents with Alzheimer miss them.   I miss the expressive and joyful Tyler.  I miss the Tyler that would have insisted I hold my attention to him and him alone, and the rest of the room would have had to taken a back seat.  I miss goofing off with him so much that I would get the giggles right along with him so much that I would need to apologize to those trying to talk with us. 

There may be nothing more frustrating for a caregiver that to watch a person fade away.  Sometimes that person can seem so close to the surface, and yet you can't reach them.  I want for everyone to enjoy that Tyler that I knew, and I want Tyler to enjoy being goofy and expressive, but it continues to elude us.

I don't know whether Tyler is simply hidden behind his medications, hidden behind depression, or if his brain has been so battered and bruised, that he has become lost forever.  Considering that he has been under the influence of countless medications for a quarter century, its hard to believe that his mind wouldn't have significant residual effects of this.  Surgeries have invaded his brain, and seizures have short-circuited it. 

Perhaps the worst part is the not knowing.  I want to believe that we can find the right combination of medication and circumstance that he finds that strong and cheerful persona he had so many years ago.  But it is just that...many years ago.  The regression has been like an army marching slowly toward an unknown destination.  It doesn't stop, it doesn't yield, it just consumes mile after mile. 

I told him yesterday that I missed him.  He signed "I love you" to me.  Its enough to make me continue digging in to find him, no matter where he has gone.

Be well and God bless.    Tom

Friday, October 4, 2019

The Art of Compassion

This week it was my pleasure to host a CPR class for our company's emergency response team.  This team is comprised of employees from various departments.  We do not pay them an extra salary, nor do we force anyone to become responders.  We simply open the training up to those people who want to help their fellow man in a time of need.

The response that I receive is one part inspiring, and one part depressing.  On one hand, there are the 10% of the employee population that eagerly raises their hands.  They know that they could be faced with a situation of dire and critical need, such as a severe injury or a heart attack.  Yet they have an inner compassion to protect human life.  I'm very proud of that 10%.

The saddest part is the 90% of those who are not interested in helping their fellow man in the time of crisis.  Perhaps I'm judging these folks too harshly, but many of the reasons behind their reluctance is simply a shield for apathy.  I had folks tell me that they cannot deal with "blood and guts" very well.  Who among us does??  I explain that being an emergency response person can also mean helping to obtain supplies, call 9-1-1, direct ambulances, crowd control, and other non "blood and guts" activities.  They still won't be bothered and I certainly can't force them.

My guess is that this 10%-90% ration is pretty indicative of many other things.  For instance, its common knowledge that 90% of volunteer work done for a church is performed by 10% of the congregation.  Imagine if those numbers were made to be an even 50% split what a difference would be made in our world in general.  

I believe we have come to accept that compassion is the exception instead of the rule.  We need to ask ourselves why this has happened.  Is it because society has decided that it is "too busy" to worry about the problems of others?  Is it because we have watched "leaders" who have shown themselves to openly insult, degrade, and demean others that we have accepted this as the norm?  And how much of this apathy has been adopted by our children, thus further watering compassion down for the next generation?

I'm always shocked when I'm in a class where the question is asked "how many of you are organ donors?", and only half or less of the hands go up.  It's a personal choice...yes.  But I cannot, for the life of me, think of a valid reason not to do it.  To me, this should be an absolute no-brainer.  If I die suddenly I want for others to benefit from my organs.  If I can help a blind person see, a burn victim with new skin, give an organ to someone desperately needing one, or veins for a person needing them, sign me up!  I've actually heard people say "I don't want to have someone butcher me up after I'm dead".  You're D-E-A-D...vanity should really stop there.

Raising my children has taught me many lessons in compassion.  For Tyler, we had to learn to see the world through his eyes and understand his fears and anxieties.  Even when he was being aggressive, we had to have compassion for what caused these behaviors within him.  Compassion was also a key element in how we judged the performance of a physician or medical provider.  We expected compassion from schools, buses, nurses, and anyone else who worked with Tyler.  We considered this the most minimum skill that they had to possess.

Sam is a different story.  She is a very compassionate person who has her feelings hurt when others do not treat her in kind.  Even as a smaller child, I would see her act in kind ways toward others.  I remember when she was about 5 we were at a zoo where you could feed some animals.  While other kids were jockeying to get to the best spot, Sam spotted a little girl without feed.  She asked if she could give the little girl some of hers.  I'd like to believe this was all from things I have taught her, but I know much of it is just naturally in her heart.

Lets try to remember, today and every day, that compassion is the door that opens up so many other things.  When we show compassion first, so much other great things will follow.  But unless we can grow that 10%, I think we will continue to struggle as a society.

Be well and God bless.     Tom

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. Kofinas....one 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 have...be 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

Wednesday, August 28, 2019

For Matty

I often have to travel between the two locations that I work for, which are about 10 minutes apart.  Most days I try to spend 4 hours at one location, and 4 hours at the other.  Since I am typically making the transition around lunchtime, I try to take my time and clear my mind.  There are plenty of restaurants, a home improvement store, and a consignment shop that I can visit.  Admittedly, one of my favorite sinful foods on earth is McDonald's french fries.  I'm pretty sure they are fried with flakes of sunshine and rainbows because they make me so happy.  So, once every week or so, I stop in for a hamburger and fries.  This is where I met "Matty".  

The first time I met Matty, I could tell that he had an MR diagnosis.  But the first thing that really struck me was how HAPPY this young man was.  The second thing that struck me was how the employees associated with Matty.  They were happy to see him, and made him feel right at home.  Matty marched right up to me and stuck out his hand.  He introduced himself and asked for my name, which I obliged.  We told me how he was looking forward to going to an amusement park that day.  I asked him what his favorite ride was, but he couldn't answer as it seemed he couldn't process the question very well.  All he knew was he was excited.

Over the course of the last few months, I've seen Matty a few times and said my hello.  He is excited that I talk with him but I'm pretty certain he doesn't remember me much from the previous encounter.  Something that doesn't change is his sweet disposition and his open heart.  Joy flows from this young man.

Today I walked in for my fry fix, and there sat Matty with a lady I perceived to possibly be his Mom.  I sat myself right next to their table so we could share lunch together.  I shook Matty's hand and I could see him struggle to remember me.  I re-introduced myself and the lady told him that we saw each other last at Burger King where I teased him for not being at McDonalds.  This seemed to spark his memory a little.  The lady explained that she is a caregiver from a local agency and she spends time during the day with Matty.  As curious as I am about him, I know better than to ask many questions.  We have to honor the legal and ethical rights Matty has to his privacy.  Matty was thrilled to have a friend sit and talk to him.  He was pointing out different colors, and complimented me on my fancy shirt (I was wearing a hawaiian shirt).  He repeated the Burger King story back to me time and time again, and then he would laugh.  I showed Matty a picture of Tyler and he was very inquisitive.  He showed me the crew hat that the employees gave him.

I finished eating and told Matty I needed to head back to work.  We looked at my empty tray and said "are you done?".  I nodded and he stood up and said "let me take this for you".  I protested that he didn't have to take my trash for me.  The caregiver touched my arm and said "let him do that for you...you won't talk him out of it anyway".  She was right.  Just like with Tyler, once he set his mind to it, it was over.  Matty took pride in taking care of that for me.  Matty shook my hand twice more and we promised to see each other again.  "At Burger King!"  he said.  And then he laughed and said "take care" as I headed to the door.

Such a simple experience that made such a profound effect on me.  Here is a young man, full of joy and love for others.  He can't remember the names of colors and yet he wanted to show me kindness by taking care of my tray.  His heart only wants to connect with others in the same way.  For this, he is the prime example of human decency and kindness.  I hope that my interactions with him make him feel the same way.  Any I look forward to seeing Matty again real soon.

Be well and God bless.   Tom

Monday, August 26, 2019

Lessons From Andrew Luck

Some (or many) readers of this blog may not follow American Football at all.  While this post will tell the story of one particular player, its really about much larger points.  So even if you don't follow what happens on the gridiron, hang in there, and read on!

Andrew Luck played football for Stanford University.  Besides being an extremely talented player, he was a was revered as a leader.  Putting it into context, Stanford is already chock full of extremely smart people who will become future leaders, and Andrew was a leader for them.  Luck could have entered into pro football in 2010 but chose to stay with his teammates for one more season, and to earn his degree in architecture. 

In 2011, Luck became the #1 player picked in the draft by the Indianapolis Colts.  His career would be very successful as he would lead the team to multiple playoff appearances, and set many Colts, and NFL records along the way.  The last few years he would suffer some injuries which became difficult for him.  Suddenly, in 2019 he would decide to retire.

What's unfortunate is that the news of his retirement broke while he was on the sidelines watching his Colts play in a preseason game.  He was still nursing a calf strain and was not in uniform.  The fans began to get word via the internet that he had decided earlier that day to call it quits. 

Then...the unthinkable happened.  The fans, HIS fans, booed him as he left the field.  A man who had served them so faithfully and been such an example of leadership and class was BOOED off the field.  And for what?  Maybe he was the quarterback for their fantasy football team?  Perhaps they were worried about how it would effect their Super Bowl chances?

Andrew Luck is by all accounts an amazing leader.  He was known to recommend books to his teammates because he wanted them to enjoy his passion for reading.  He turned down being #1 in the 2010 draft so he could finish his commitment to his education and his teammates.  He was known to compliment the defensive payers who would pummel him on their good play.  He married his long time girlfriend and they are expecting their first child.  And THIS is who they selfishly booed off of the field.

Andrew simply stated that he didn't feel it deep in his heart anymore.  He couldn't justify the physical demands, the injuries, and the risk of permanent disability (especially head trauma) anymore.  He wants to explore other interests in his life.  He wants to be healthy enough to enjoy his wife and new child.  One writer quipped that this makes him the typical millennial, wanting the glory without putting in the work.  That writer had never played the game, never had the accomplishments, and likely never did anything more strenuous than carry a pack of paper to his desk.

There is a bright lesson to be taken from this story, and a dark one.  The dark lesson is that all those supporters immediately turned their back on his because they could only think about their own narrative.  As long as he was winning games and willing to donate his pound of flesh, they loved him.  But the minute he made a decision for himself, those pats on the back turned to stabs.  Now they sit around and cry foul about what horrors he has suddenly brought to them.  As though the Indianapolis Colts somehow holds the fate of the free world in its hands.

The bright lesson is that Andrew Luck had the courage to be the master of his own destiny.  He knew that many people depended on him on the field, and yet he chose to follow his heart and do what was right for him and his young family.  Make no mistake about it, he left fame and fortune behind and was willing to leave tens-of-millions-of-dollars on the table while doing it.  But as he probably did in all of those math classes he aced at Stanford, he weighed all sides of the equation.  He calculated each factor, and he knew what he needed.

My friends, our decisions will always be up for debate by others who do not live our lives.  Perhaps the majority of those around us have only the capacity to see what it means for their own agenda.  But when those boos stop (and they will stop), you need only to answer to your own heart.  And if you can look yourself in the mirror and know that you were led by your heart and that you did what you felt was right - you will not lose.  

Be well and God bless.    Tom

Friday, August 23, 2019

What If?

What if autistic children were sent onto this earth as angels, and those angels were sent to see how others would treat them?  What if those children were meant to someday inherit the earth and the heavens, and the rest of us would be judged by how we treated them?  What if we are protected as we protected them, respected as we respected them, and loved as we loved them? 

What if the poor were sent onto this earth as angels, and those angels were sent to see how others would treat them?  What if the poor were meant to someday inherit the earth and the heavens, and the rest of us would be judged by how we treated them?  What if we are treated with kindness and generosity as we treated them in kind?

What if pain and struggle was a gift from God, and that gift was sent to see how others would respond?  What if those in the greatest pain were meant to someday inherit the earth and the heavens, and the rest of us would be judged by how we responded?  What if we are comforted and cared for as we did for others on earth?

The angels are already here.  The gifts are already at our feet.  Those gifts have nothing to do with gold or money, but rather our capacity to love one another and care for those who need us the most.  For it will be those people who will inherit the riches forever.

Be well and God bless.  Tom

Thursday, August 22, 2019

Netflix Documentary

I will admit it....I am a sucker for a good documentary.  Netflix, I find, typically has some good ones.  What I look for are human interest stories.  Last night I watched a good one that explores the layers of mental illness through the eyes of someone suffering from severe bi-polar disorder.  It's called "God Knows I'm Here".

Without giving too much away, the true story examines the last weeks and months of it's subject Linda.  Linda has a similar story as many Americans with mental illness in that she begins to display erratic behavior and then has a love/hate relationship with medications and the friends and family trying desperately to help her.  In their own words these friends and family members describe the girl they knew, and the woman they saw toward the end that they barely recognized.  Her daughter described her as both "Mom" and "Linda".  Mom was rational and loving while controlled by medications, and "Linda" was paranoid and irrational when she was not.  

The documentary also briefly touches on the facility and doctors that tried to help her but eventually had little choice but to release her, without even the knowledge of the family.  This dynamic calls to question a person's right to have choices about their own care even when they are seemingly incapable of making good ones.  A doctor describes these individuals as "drowning in their own rights".  

What makes this documentary truly fascinating however, is that she creates a journal to describe her own decline and pending death.  In the fall of 2008 she finds herself living in an abandoned farmhouse, eating only apples from an apple tree and drinking water from the creek running on the property.  Its heartbreaking to hear her write that she is waiting to be rescued, as though she is trapped, when there is a house directly across the road.  She intentionally hides to not be seen and yet is awaiting rescue.  You begin to realize that the rescue she wants is from her own mind.  Amidst paranoia, a relationship with a purely fantasized husband, and her be comforted by the solitude, she cannot truly figure out her situation.

While there isn't much to correlate directly to Tyler, it is a fascinating study in mental health.  There are so many layers to mental health issues, and this certainly captures many of those.  By looking at the role the family played, the role she herself played, the institution, the current patient rights, etc. it provokes interesting discussion.

Give it a look and let me know what you think!

Be well and God bless.

Tom  

Monday, August 19, 2019

Feedback from a Friend

Good Morning,

I realized this morning that a friend of mine, amazing artist, incredible human, and so-so author (I kid you my friend) Tom left feedback on the post "Deeper in the Woods" and I had yet to fully read it.  It was a little voice in my head that reminded me that I needed to read his thoughts.  Tom inspires me through his art and written word, but so much more by his gentle belief that only through care and love can we reach our true happy place.  

What I read humbled me right down to my socks.  The beautiful thing about our friendship is that we have often known what each other needed to hear without even knowing whats going on.  It's like a 6th sense.  His entire feedback is publish beneath the "Deeper in the Woods" entry, but I wanted to share a small piece of it:

What can I say, Tom...my God, these are challenging times for you! I don't really know what to say except that your words here - so powerfully authentic, even gut-wrenching, (because they are so real, human and love inspired) are helpful and healing to all who read them. Not even so much because of what you are sharing...as much as the fact that you want and need to share your deepest, most challenging, real life (in one way or another common to all of us) experiences at this time. The love reflected in your words is so obviously, and again - inspirationally rooted in your heart.

Those words reminded me of why I started this blog in the first place.  There are people, so many people, who are living as caregivers to children, siblings, parents, who are screaming my thoughts and words in their heads but cannot find the way to let them out.  Afraid to allow their most desperate, hopeful, or dark thoughts to see the light of day because of how others may react.  Or worse yet, upon hearing their own words, to have to come to grips with what they have said.

Writing from the most raw and unfiltered of places has its own risks.  Words typed through layers of emotion are not agreeable to everyone who may not understand those emotions.  Those who have never walked this journey may not grasp how a person might respond to things that happen around them.  But if I'm really, really lucky, someone will see a post and that will be the message that they needed to read at that moment of their life.  

On Sunday, Pastor John said something that resonated very strongly with me.  He said that when feeling grief it is necessary to allow yourself to really feel the emotions and express them as a means to process them and understand them.  If you have read my blog for any length of time you have heard those words come from me as well.  Our emotions and ability to express them is a true gift.  That gift isn't reserved for only thoughts of daisies and puppies (although I like puppies a lot) but for thoughts of desperation, frustration, and pain. These thoughts are also gifts that teach us things about ourselves and the world around us. 

I want to thank Tom for reminding me that life around us is hard, and sometimes downright impossible, but being true to one's authentic self is where we find the light to continue on.

Be well and God bless.   Tom

Sunday, August 18, 2019

A Favorite Tyler Memory

Just the other day Samantha looked at Tyler's graduation picture and asked me about it.  It brought back a wonderful memory that I hadn't shared for a while.  It's a story worth repeating....

When Tyler turned 21 he legally fulfilled his obligation to school and was able to graduate.  We were approached about how we would like him to receive his diploma.  Because he lived in Northeastern school district, and we paid the school taxes to them, he would receive their diploma, even though he didn't attend school there.  In reality, he attended his later school years at West York Middle School because that is where a suitable multi-disabilities class was housed.  To muddy the story a bit, he was actually under the guidance of a district called Lincoln Intermediate which housed classrooms within other districts.  So to recap...he was a student of Lincoln Intermediate, living in Northeastern, attending school in West York.  Need a scorecard yet?

He could graduate with the senior class at Northeastern....but he didn't know anyone there and they didn't know them.  He could graduate with a group from Licoln Intermediate, but again he didn't know them.  He could even graduate with the senior class of West York but again, same issue.  And I realized that the middle school was his home.  He was loved there.  The kids knew him there.  The faculty knew him there.  He was respected and taken care of there.  So I requested that he graduate THERE.  The school decided that at the end of the year, during an awards assembly, he would walk the stage and receive his diploma.  I requested permission to give a speech on his behalf, which they gladly obliged.

On graduation day his teacher stepped to the podium and began to speak.  She had loved him and taken care of him for 13 years and all of that seemed to come to the surface.  She wanted to make a speech, but instead she cried.  Those emotions spoke clearer and louder than any words would have done justice.  Dedication, love, encouragement, challenges, and triumph all flowed from her.  Miss Sue was and always will be his school Mom.

It was my turn.  I had written a speech and practiced it.  When I began to read the speech it didn't take long before my thoughts left it.  I was just going to say it from the heart.  I thanked everyone for the love and respect they surrounded him with.  It was every person in that room who lifted him up and carried him onto that stage.  They all walked with him to receive that honor in one way or another.  They played basketball with him, high-fived him in the halls, cheered him, and protected him.  I was as proud of them as I was of him.

Tyler then walked the stage to receive his diploma.  What happened next was pure magic that I will take with me to eternity.  Every person in the auditorium gave him a standing ovation.  They cheered him and clapped for him.  His perseverance moved them to tears and cheers.  For a moment time seemed to stand still as the love rained down on him.  It still gives me chills to close my eyes and remember that day.

This is a memory I visit sometimes when I want to remember the tremendous love that has so often surrounded him.  And it's a story that I can share with Sam to let her know the world can be a compassionate place if you look in the right places.

Be well and God bless.  Tom

Another Day the Blog Nearly Died

This afternoon I received a call from a very wonderfully lady who was asked by the church to call me and inform me that the blog has once again been suspended.  The church is currently deciding whether or not to permanently disassociate itself from the blog.  They will be meeting Tuesday night and will make this a point of discussion.  The theme is essentially...do some of my blog posts cross the line of being "too political".

To be fair, there was a sentence in my post yesterday that did not correctly represent a point I was making,  My point was how we often see church leaders stump for a candidate they believe align with the values of their church, and yet opposing views don't belong because they are too political.  It's hypocritical.  I was not referring to my own experience at OUR church, but I did not draw that distinction.  I enjoy the current environment and the message being delivered and have no intention of leading anyone to believe otherwise.  I've actually edited that post to reflect this distinction.

However, to deny that politics is not a part of special needs parenting would be to deny the existence of air.  Politicians control the funding by which Tyler and all others like him rely on to live.  Laws are made or not made which protect special needs individuals.  And politicians are the first line of authority that people watch to find out where we stand in the world.  So to say...no Tom you can't post anything political would be to deny that politics has any stake in the life that Tyler and I live.

This blog belongs to Tyler and his story.  And I have maintained for years that sometimes that story will inspire, sometimes it will provoke thought, and sometimes it will challenge our thinking.  But it will always be honest and true to who we are.  It will deal with points of view, all points of view, and without apology.

Sadly, a group of people will decide whether two posts out of the hundreds written, is too politically sensitive for them to keep it linked to the website.  Make no mistake, this is their choice to make.  I suppose it will left to a vote to well meaning folks who do not understand the actual point of the blog itself.  It's an expression of how I perceive the world around Tyler.  The WHOLE WORLD.  Not the world except for this subject or that subject.  That how it has always been and that's how it will stay.

I'm going to focus on the 60,000 people who have read the blog across the world.  The people who I've talked to in airports, neighborhoods, and by email who have said that because of the honesty and unapologetic things posted in the blog that it has helped them to cope with their own situation.  I will continue to write for them. I will continue to write for me as my way of making sense of what goes on around us.

As for whatever discussions that happen around the blog, I don't want to be involved.  I'm not going to justify a single word, nor should I be asked to.  For years I've written from my heart and that's how it will stay.

Be Well and God Bless.   Tom

Saturday, August 17, 2019

The Day the Blog (almost) Died

Good Evening.

About a year ago, this blog almost died.  I wrote an entry about the power of words. I pointed out that our leaders, leaders of all types, are responsible for setting an example for those who followed.  Regardless of political alliances we all have a moral responsibility to be a moral compass for those who are appointing us to do so.  I used Scott Wagner as an example.  While running for Governor of Pennsylvania he threatened to stomp his opponent in the face with golf cleats.  This is a fact.  I openly wondered how we had come so far removed from the respect that should be shown by a public servant.  I felt this to be important because the way we treat others is SO important to the special needs community.  When empathy suffers, the special needs community suffers.  When bullies win, the special needs community loses.  Because I used a conservative candidate as an example, the blog, sponsored by the church, was suspended.  I had to edit the entry or else face loss of sponsorship by the church.  I was not permitted to be "political".
I find it interesting that we often see national church leaders that dont mind being political when it endorses conservative candidates, but will threaten its sponsorship of the blog when it threatens conservative values.
The problem that we face as special needs parents is that empathy is becoming more scarce by the day.  Benefits are cut while needs increase.  Our "leaders" are justifying racism and elitism while their followers are happy to get theirs while thumbing their noses at those less fortunate.
The painful truth is that when our society is failing, the special needs community suffers first and suffers worse.  When we cut taxes for billionaires and cut funding for special needs children at the same time, we have lost our way.
We are a society that nearly cut funding for special Olympics and yet doesn't blink when a RB demands a 40 million dollar contract to play football.  We celebrate an individual who publically makes fun of a handicapped journalist and ridicules an overweight supporter.  We fly racist rebel flags without concern for the pain it causes others.  We watch our babies get gunned down and argue over weapon rights.  We turn away the poor.  We justify selfishness and hate.  These are facts.
Because our values are a direct reflection of how we treat our special needs community, I will never again be compelled to sensor myself.
We have to do better.  We have to demand better.  Forget political affiliation and start thinking of human affiliation.  We must ask ourselves what will help our fellow man FIRST.  Love has to come before all else.  Compassion.  Empathy.  Giving,  Community.  Without those things we will surely die.
Join me in demanding better of ourselves and each other.

Be well and God bless.  Tom

Wednesday, August 7, 2019

Deeper in the Weeds

Sometimes I consider doing a post and I wonder if I should.  After all, it seems that lately Tyler has gotten deeper in the weeds with his state of mind and behavior.  That brings out the despair and frustration in me, and then my posts wind up being gloomy and dark.  That isn't the way I want the blog to go.  I want it to be inspiring and helpful.

Then I remember....this IS who we are as caregivers.  We spend more then a fair share of our time wading through the weeds.  And sometimes the more we crawl, the deeper we seem to get.  Thats where we find ourselves at the moment.  Deep weeds.  In the deep weeds its hard to get out of bed, its hard to push through your day trying to look normal and interact as a normal person.  There are times I see an open door and I wonder if anyone would notice if I sprinted to the street and made a break for it.  You become preoccupied with searching and searching and searching every corner of your brain hoping to find an idea or an answer that you hadn't thought of before.  And all you find is the weeds.

I'm in the weeds because Tyler is in the weeds.  In fact, I've never seen Tyler this far into the weeds before.  It started about 6 months ago when his behavior normally shows its typical spring/fall improvement.  Instead of going into the manic months of loud excited speech and laughing at everything he sees and hears, he slipped backward.  To my knowledge nothing had changed.  He wasn't going through any environmental, medical, or other changes that I can pinpoint.  We immediately had CT scans done but they came back normal.  We also had him tested for a UTI to no avail.  By all accounts he is physically healthy, but psychiatric-ally falling apart.  Since Tyler is non-verbal a lot of this is guess-work.  We THINK he could possibly be hallucinating or at least in a confused state.   His balance has gotten bad as well.  Could that be signs of a small stroke?  His interaction with even his closest people has dropped to next to nothing.  He takes no joy in seeing me or the rest of his family.  It almost seems like a really deep depression.  He falls asleep often even while sitting for an activity.  He doesn't watch his true passion - baseball - anymore.  He stands almost all night at home and faces toward the back of the room.  

Has he had a mental breakdown?  Is he so saturated with 25 years of prescription drugs that he has experienced a chemical breakdown?  A stroke?  Scarring from years of seizure activity?  I just don't know.  And not knowing means I can't help fix him.  We tried a minor medicinal change and that seems to have increased the aggression we are seeing.  Add to all of this that we lost our Neurologist of 20+ years (he is a Pediatric Neurologist and was forced by his group to give him up finally at age 27) and now we have to start over with a new one.  I understand the change, we knew it was coming, but the timing is really bad at the moment.  The tests he needs and the suspicions I have are neurological and it will be at least 8 weeks more until I get to see the new one.  I'm trying to move that up but I've been unsuccessful thus far.  

My Dad is also having cancer removal surgery this week.  Don't tell him I put this on the blog or he will be pissed.  I'm pretty close to my dad, although he isn't the easiest man to be close to.  He is just an old, old, old school guy who is getting older school by the year.  He doesn't take it well when he is on the receiving end of treatment and doctors and such.  I generally try to buffer between him and the doctors so he doesn't get aggravated and they aren't tempted to OD him on morphine.  Despite the difficult personality, he loves his kids and grand kids and we love him right back.  Everything I learned about the importance of honesty and integrity I learned from him.  I respect him for that.  I just hope we have more time to appreciate each other, even though we are so different.

So that's the double-whammy.  And what happens to the caregiver who is already in a knockdown drag-out fight for their special person, is that the second whammy comes along as a part of normal life, and its just overwhelming.  Trust me...being a caregiver doesn't make you exempt from "normal" family crisis...it doesn't make you exempt from money problems...and it doesn't make fate treat you any kinder.  We get all the normal crisis on top of the full-time caregiving crisis.  

Today it feels like a weight squarely across my shoulders.  It has been all I can do to remain on task and be productive.  But I remember the message I put on here time and again...I WILL GET THROUGH THIS.  There is always a light somewhere and if we just keep crawling through the weeds we eventually find it.  

Right now its just weeds....

Be well and God bless.   Tom

A Milestone Reached

Good morning.  The plan is to post an update a little later today on how Mr. Tyler is doing.  Before I do that, I wanted to let everyone know that the blog has reached another big round number of views!  Since this blog was launched about 3 years ago we have reached the lives of 60,000 readers.  I cannot express how wonderful it feels, especially now when we are in the midst of a struggle with Ty.

I'm sure Tyler would agree when I say I hope by presenting our story we have managed to help some of those 60,000 readers.  Though we will never truly know, it would be great to believe that we have changed at least one life for the better.  I want to believe that our words have made people laugh, cry, and most of all to think about things in a different light.

Those 60,000 views have come from all over the world, which shows that being a caregiver is a universal thing.  Unfortunately, Autism, Alzheimer, and every other form of mental illness knows no boundaries.  Mental illness doesn't care if you are rich or poor, black or white, young or old.  

To those of you reading in Russia, Brazil, Germany, Canada, South Korea, France, India, and every other part of the world, I thank you for receiving Tyler's message from so far away.  If you are a caregiver in that part of the world, I send my respect and my love.  For those who follow here in the United States, I thank every one of you for being a part of this journey.  

I want to leave this post with a simple thought.  I am so proud of Tyler today.  There are few people in this world who can touch the lives of so many.  He bring encouragement and joy to everyone around him, he spreads a message of love throughout the world, and he shares Bibles with his local church.  What a blessing he is.

Be well and God bless.    Tom

Tuesday, July 23, 2019

My Brother and I

My daughter, budding dancer and artist extraordinaire, has asked to share some thoughts on growing up with her autistic brother.  So, I turn over the computer to her....and hope for the best:

Hi again my name is Samantha. And i am Tyler's sister and today i will be talking about how i feel about having a autistic brother and how i lived for 4 years with a brother like that. And to start i what to talk about is going on trips and having him on trips was great because now i don't get to do that and the best part was when you go in the wheelchair lane you get right on and i love how the people at Disney made sure he got right on because they knew what he had and now i give a big shout out to the people that did that for my brother so thank you. and i do like doing that with my brother because it is a family moment with all of my family together and i love being with my family and when we used to go to the beach together i would the same thing he would do he would take a shovel and dig sand and throw it over his shoulder and i would do the same thing and it was fun all the time to spend time with him and having a brother is really nice because some people don't get siblings and i am one of the lucky ones that get to have a sibling now some people might be saying that was it hard to bring him on trips well yes it is it is hard for all of us because we all need to keep our distant because he tends to get figity  when people crowd him so that's how he gets and i have a message for you to remember and this is coming from me a kid who had experience that never judge a book by a cover because when you do that people kinda feel what your saying and it is mean to do that and that is why i now what you to know that when you see people like Tyler don't judge him he can't help that he has what he has and when i am at like Disney i feel like people are staring at him and i don't like it when people do that because it is wrong to do that and that's why i want you to appreciate these people who are going through this and you might not know but these people are trying and when people laugh at them they feel bad inside and we don't want people to do that so when ever you see someone talking or laughing i want you to step up for whoever it is you need to step up for them because that is the right thing to do and that's what i want you to do because these people can't fight for themselves so my message is that you don't judge a book by it's cover and i want you to stay beautiful, awesome, and loving  and be nice to everyone you meet and no matter where you live there is love in the air and that's why be nice anywhere you go and to anyone you meet so love you Tyler and bye for now .


Let's review.  First it appears we need to work on punctuation (any would be helpful!).  I wasn't sure about her loving Disney for the perks of skipping lines, but glad she recovered by shouting out to the Disney employees for making sure Tyler was so well taken care of.  What strikes me the most is that she is THANKFUL to have a brother, even one who made things more challenging for her.  She obviously wants everyone to treat their fellow man with kindness and respect, which is one thing that I truly love the most about her. 

We can learn a lot from the eyes and heart of a child.  Maybe she is telling us the greatest 3 things we can all do....all in one glorious run-on sentence:
1. Enjoy every little moment with your family
2. Be thankful no matter what challenges you face
3. Be kind and love everyone no matter what their "cover" might look like

Pretty profound stuff.  Thanks Sam.

Be well and God bless.   Tom

Monday, July 15, 2019

You Have to Find Hope

Friday's post was pretty difficult.  I think it shows how defeating it can be when we watch our special person struggle.  

I will be the first to admit that I have a pattern to how I handle the emotions of Tyler's struggles.  Once the day's battle is over, I become very introspective.  Usually this leads to a short period of feeling extremely sad and in despair.  As sad as I become, I have learned even then to keep a certain perspective.  I remember that every extreme low (and extreme high) is only temporary.  I also remember that Tyler and I will always have each other and that regardless of how bad things could ever get, there is nothing more important.  

One point I want to be clear about, I think as long as all of us know how to keep proper perspective, it is very important to follow through with those emotions.  After I wrote the last post Friday night, I texted my Nephew and his wife and invited them over to swim, have a pizza, and drink a few beers.  We shared some laughs and then we sat around the fire pit and exchanged woes.  His wife is experiencing some family-related problems on her side of the family, and my Nephew has some issues happening on his side as well.  It seems we all have sadness we are carrying around.  By talking about them we validated them and gave them a place in our order of things.  We certainly didn't solve anything, but we allowed ourselves to open up and talk which is worth its wait in gold.  

If you find yourself unable to deal with your emotions, or you are having thoughts of harming yourself or someone else, please make sure to contact a doctor or crisis prevention specialist right away.  

The remainder of the weekend was spent with family and church.  I did a little power washing, some grilling, and visited some friends who love to play cornhole and have a good time.  Does it make everything just go away?  No, of course not.  But each person who gives a word of encouragement, or a prayer, or a hug, or even just asks how we are doing is making it just a little easier to continue moving forward.  Instead of being overwhelmed with the helpless feelings, I get to also feel the love of others.

So to Dan, Megan, Mom, Dad, Pam, Andy, Mike, Molly, and Rob....thanks for making me laugh....thanks for needling me...thanks for the pats on the back and the hugs.  Thanks for sharing your trials with me, and listening to mine.  And thanks for just being there the last few days.  It placed me back on my feet and ready to keep going.

Be well and God bless.   Tom

Friday, July 12, 2019

Little Boy Lost

I would love to be able to spread happy news.  I want this blog to be about improving our lives and how others can do the same.  That wouldn't be the reality of what we do as caregivers.  Unfortunately we seek answers to questions we don't understand, and once we think we have an answer, the questions change.

Then there is the heartbreak.  I sit before you with this sadness that I cannot begin to describe.  Its a sadness that is consuming to the point that it drains me emotionally, mentally, and physically.  I'd rather deal with anger, at least anger makes me feel motivated to fight.

We were able to get an emergency appointment with Tyler's psychiatrist today on short notice.  I was able to make myself available whenever the call would come in with a time.  At about 10:30 am I was told we could be seen at 12:30 pm.  For this appointment I would have attended at midnight if I had to.  Even if it were being held on the moon.

The appointment went fine.  I walked away feeling as though we had a plan of action.  What made me feel so incredibly sad was looking at Tyler's demeanor throughout the meeting.  He was withdrawn from everything.  It looked as though he wanted to put himself a million miles away.  He barely acknowledged me.  If anything in the world ever pulled him out of a dark place it was our relationship.  The only time I ever saw him like this was when he would be hospitalized and he would withdrawal as a defense mechanism.  I was able to get very little feedback from him at all.  He left the room when it was over without even a glance in my direction.

Is his demeanor because his medications have put him into a sedated fog?  Is he depressed and feels that I have abandoned him?  Has he lost the will to fight for himself and simply wants to be left alone?  Or is there a long term medication effect happening that is altering his mindset?  Nobody can tell for sure.  The world of the non-verbal doesn't allow for many clues.

Our hope is that by reducing a medication that has the possible side effects of sedation and confusion he can get some clarity.  Maybe he will feel more energy or more aware of his surroundings.  Maybe he can get some spark back.  Its a guess basically, even by the experts, but this is what the team has decided to try.  For his sake, I hope this clears some cobwebs so that Tyler can shine through again.

Be well and God bless.    Tom

Saturday, June 15, 2019

Fathers Day Song

I've been so many things
From a bastard to a King
Spent days that would make you cry
And others to make you sing

One too many challenges
Traveled one too many roads
My bones became too weary
Carrying one too many loads

Above it all you needed me
Regardless of the rest
You only knew you needed me
And you had to have my best
You had to have my best

Empathy is just a slogan
That's sold without a thought
We will stand right behind you
Til the next time we've been bought

We care for the least among us
As long as we See it pay
When it doesn't fit the right agenda
We quietly make it go away

Above it all you needed me
Regardless of the rest
Even when society failed
You had to have my best
You couldn't live without my best

Even the heroes found among us
Are tied by kryptonite
Red tape and limitations
That keep us up at night

ISPs and meetings every month
Psycho-babble that fill our brain
We gather up in meeting rooms
Just to say the same shit over again

Above it all you needed me
To keep a level head
When the questions got too big
I'd answer them instead
I had to answer them instead

So to you my baby boy
I pledge to always know
Regardless of the world outside
How to keep us all in tow

After all it's only you
That needs me to come through
The world may try to break us down
But in the end it's only you
In the end it's me and you
All we have is me and you



Monday, June 10, 2019

Still Struggling

As noted in a previous post, Tyler is currently struggling with his ability to control his behaviors.  We hate it for him, and we hate it for everyone else that is trying to help him.  It's a helpless feeling knowing something is wrong with your child, and not being able to make things better.  Its worse yet when the people trained to evaluate and calibrate his medications appear to be sleeping at the wheel, or worrying about bureaucratic details more than serving him as they should be.  I'm sure every special needs parent has had those moments where they want to grab someone by the collar (I'm being kind) and shake them while screaming "I don't give a damn about anything else other than making my child better!"

The girls and I decided to spend some time with him after church yesterday.  We had him and his caregiver meet us at the park, and we picked up subs along the way.  His mood in church seemed pretty good, although he seemed tired and nodded off during the service. The park was busy but we found a nice shaded table to sit and eat.  It was beautiful out with ample sun and a breeze to keep everything nice and cool.  We were all talking about how he was doing when I suddenly got a hard kick to the leg.  It startled me more than anything. Its highly unusual that he ever strike me, and this was completely out of left field.  We went from calm to red alert in a second.  My reaction was to get him right up and start taking a walk....he always loved to walk.

At this point I found myself falling into every old habit I ever had.  I watched every movement he made looking for a physical sign that would tell me what is wrong.  He wasn't cocking his head back so there is no danger of his shunt malfunctioning.  He isn't pushing his belly either.  But his balance is extremely off.  I also became concerned at how quickly he tired, as he always outpaced me with no problem.  I decided it was best if we shortened the walk and allowed him to head back home.  But not before one quick selfie...

I find myself in a familiar mixture of worry, sadness, and frustration now.  Its amazing how quickly I can be taken back to those emotions.  We all made so much progress over the last 2 years, and now it feels like its all gone.  It will probably sound juvenile to say this, but it just isn't fair.  Tyler has had more than his share of difficulties in this world and he deserves to be content and at peace with his surroundings.  Something which seems so little to ask shouldn't be so hard to maintain. It feels like all 4 of us deserve to someday have that peace of mind that continues to merely come in temporary periods.  

I know I have to dig in and fight for him.  I need to make some calls to his doctors and start pitching fits until something is done with his medications to help him get through this.  It just feels like today I'm trying to run with feet of clay.  I want to be angry so that it motivates me, but I feel more sullen and defeated.  

Tyler needs me.  Tyler needs those around him to rise up when he cannot.  There has to be actions made on his behalf and I swore to him as his Dad and his Guardian that I would always be the last line of defense for him...a line that would never break.  

Its time to pick up the shovel and start digging.

Thursday, June 6, 2019

Summer Swimming Safety

This is the season for many fun activities, going to picnics, cookouts, sports, and swimming.  I am one of those people that loves the summer and tries to be outside as much as I can.  For those of us living in the Northeast, its a seemingly short summer season that requires us to take advantage of every warm sunny day we get.  My daughter is the same way, asking every day since April if she can get into the pool.  Most kids are drawn to the water like moths to a flame.  Special needs children are especially drawn to areas of water.  With this in mind I wanted to talk about water safety for EVERY child in the hopes that raising awareness can lead to an amazingly fun, and safe summer.

This post is dedicated to Judah Levi Brown.  I learned about Judah through an article which appeared on Facebook, from TODAY Parenting Team community site.  I was immediately touched by the words on the page, coming directly from his mom Christi's heart.  I asked if I could share her message with my readers, and she graciously agreed.  This is Judah..



Judah reminds me of my daughter where it involves water.  Most of the time I have to drag her out of the pool even when she is shivering or her skin looks like a wrinkled shirt.  And while reading the article I found myself nodding my head, agreeing with all of the things that were done to ensure his safety.  Swimming lessons...check.  Attentive adults...check.  Floating device....check.  Practiced rescue techniques....check.  I've covered all of the same angles with my own children.  Being a loving, careful, attentive parent should really always be enough to protect my child.  Until fate finds a way of unfairly and unjustly robbing us of what we work so hard to protect.

Judah's family was enjoying a BBQ with friends, and the kids were all enjoying the pool.  Judah had done as every other child does, hopped out of the pool, sat, and then decided to get back into the pool.  And in the transition from swimming, to drying, to sitting, to getting back in, he was no longer in his float device.  In a moment more, he was gone.  Despite quick reactions and attempts to keep him alive, Judah was gone.

Because swimming is such a fun activity associated with friends and picnics and happy things, the dangers lie silently in the background.  The truth is that drowning is the #1 cause of death for children ages 1-4.  It is the #2 cause of death for children ages 4-14.  And that boys are 77% more likely to drown than girls.  For every child that dies from drowning, another 5 are treated in emergency rooms for nearly drowning.  

For special needs children, the statistics are even more frightening.  Children on the autism spectrum are TWICE as likely to drown as typical children.  In a study between 2009 and 2011, accidental drowning accounted for 91% of injury related deaths of autistic children ages 14 and under.  An estimated 90% of drowning deaths occur while the child is being supervised.  That statistic is stunning.  There is likely a deadly combination of curiosity and lack of danger awareness that attributes to the increased risk.

So the question remains...how do we make proximity to water as safe for our children as possible?

  • Teach your child to swim.  With that, teach them what to do if they fall in or get into trouble in the water
  • Know your child's personalities and abilities
  • Underestimate your child's swimming ability.  Assume that any child will panic or forget the fundamentals if they run into water trouble
  • Maximize available supervision.  As quickly as an accidental drowning can happen, even the most attentive adult may not be able to track every movement
  • Understand that drowning is generally silent.  It is NOT like you see in the movies where a person splashes and screams.  A drowning child may not appear to be in any trouble until they are under the water
  • Make your pool secure.  A pool should be inaccessible from all sides, including a secured ladder
  • Remove toys from the pool when not in use.  Floating toys are enticing for children to reach for
  • Check for drains and other entrapment hazards
  • If you lose sight of your child check bodies of water FIRST
  • Learn CPR.  The sooner a drowning victim is given CPR, the better their chances of survival
 I'd like to express my sincere gratitude to Judah's family, and the Judah Brown Project for permission to share Judah's story.  Please visit the website at www.judahbrownproject.org. 
To Christi I would like to say your article was amazing, heartbreaking, and inspiring.  Thank you for bravely sharing your story and helping to save lives.

Be well and God Bless.   Tom


Wednesday, May 22, 2019

Dear Sam

Dear Sam,

I know things weren't easy for you in the beginning.  It was hard to watch you wanting to do things but having to make concessions for your big brother.  I want you to know that even during the times you were disappointed I was proud of the way you handled it.  It seemed like even at a very young age you understood that you had to put the needs of the family before your own.  But even as you struggled to understand how everything works, you had a compassion and love for him that only a strong and beautiful person could have.  It is not fondly that I remember how you would scurry under the kitchen table when you realized Tyler was entering the room without me.

Remembering these things makes it all the more special to have spent the time together last week in Florida.  Giving you wonderful and loving memories of your growing up is extremely important to me.  I want for you to understand the lessons of putting other's needs before your own, but also to feel that your happiness is important as well.  

Like most Dad's walking this earth, I wish I could be perfect and I am far from it.  Raising a typical child in the typical world is a tremendous challenge, and with your Mom and I only having experience in raising a non-typical child before you, we are feeling our way through. If you every wonder if we know what we are doing, the answer is "not really...but we are trying".

We measured our success with Tyler in how his basic needs were cared for.  Did he eat well, sleep ok, get some exercise, go to the bathroom ok, and not have any meltdowns?  Then it was a good day.  Let's hope for another one tomorrow.  With you it's much different and more complex.  The basics are not such a concern because you can help attend to most of those yourself.  The concerns are if you are getting homework done, being treated ok, treating others well, learning to be a good friend, and learning the lessons of life in a way that is appropriate for a 10-year-old.  Its hard to measure!  And for most of these things we won't truly know until you become an adult and start applying lessons in your own life.

Then I look at this picture......


Perhaps this picture tells me what I need to know.  I can see in your face the true joy you are experiencing.  There is no sign of a little girl ducking for cover under a table, or struggling to understand how she fits into her brothers world.  This is a young lady who knows who she is and is truly happy.  She is brave.  And she trusts that when she spreads her wings she will be able to fly.  

My wish for you is that you continue to grow and experience the world.  But never forget who you really are.  Never forget that feeling of empathy and compassion that you have for your brother.  Be willing to appreciate what you have, but don't be afraid to challenge the system and ask for more. Never forget that I, your Mom, and your big brother love you with all of our hearts.  You are unique and special. And most of all....smile.  Smile every day like you did on this day.

Be well and God bless.    Tom