Friday, February 28, 2020

Communion Delayed is Communion Denied

I don't know the LaCugna family personally, but I understand their struggles.  Their son Anthony is non-verbal with a serious form of autism.  Like Tyler, he also appears to be a very beautiful young man with a supportive family.

What is so often underestimated is how special needs families struggle with the daily life occurrences that others very easily take for granted.  Robin and I once had to fight to give Tyler a private place to go to the bathroom at his school.  Another time, we had to fight for a bus schedule that would protect other children from his aggression.  Tyler cannot fight for his own rights, and many institutions in our world won't stand up and fight for them on his behalf either.  It's the family who must dig in and be that advocate.

This week, the LaCugna family found out that their son would not be permitted to participate in Holy Communion due to his disability.  According to their church, Saint Aloysius Parish in Jackson, NJ, he does not meet the criteria of partaking because he cannot understand right from wrong.  Apparently they do not believe that he can profess his relationship with God in a manner appropriate for communion.

First, let me say this.  NOBODY can know what Anthony's relationship is with God, just as nobody could know what Tyler's relationship with God is.  Just because they are non-verbal doesn't mean that they aren't speaking with God.  In fact, I would submit that because they have no natural inclination to sin, they are walking right alongside God every day.

Secondly, I have seen God work through Tyler in ways that have astounded me.  Tyler has brought family members back to the church after long estrangement periods.  Tyler has told his story (through me) to tens of thousands of people throughout the world.  Tyler has given Bibles to those who have needed them.  We will never know the scope of his impact, just as we will never know the scope of Anthony's impact.  But I promise you, they are working closer to God than most of us stumbling "normal" mortals are.

Lastly, Tyler and Anthony are specially made and loved by God.  God made them to be different. They are blessed creatures that deserve to be honored and protected in every phase of their lives.  God would want us to include his most precious children in communion. 

I predict that the church will realize that this arrogance and ego-self-righteousness isn't going to be worth the outcry to follow.  They appear to already be back-peddling and trying to claim this as a misunderstanding and misinterpretation of their true intentions.  It's not.  They are in damage control mode.

To the LaCugna family I say family will pray for you all.  We are proud of your conviction and your willingness to fight for your son.  He has every right to practice his beliefs in his own way.

And if you need a nice church to attend where Anthony is welcome for communion...join my family any Sunday you wish.  Where I come from, we honor God's special children.

Be well and God bless.   Tom 

Tuesday, February 18, 2020

Mama I'm Coming Home

I grew up a fan of classic and hard rock.  From the first time I heard Ozzy Osbourne I liked his music.  It's easy to dismiss Ozzy because of his oft publicized younger exploits (many of which are more legend than fact) and his self-referral of being the Prince of Darkness.  In reality, Ozzy has been a major part of Rock and Roll for over 50 years, and continues to be relevant today.  The main reason I respect Ozzy is for his gentle sensibilities.  Ozzy is actually a very thoughtful and gentle person at heart.  His songs often denounce war and man's inhumanity to man.  Watching his road trip show with his son Jack makes you quickly realize that he is a humble man who adores his dogs and his family.  The Prince of Darkness is more persona than practice as he reaches 70 years old.

In the spring of 1992 we were anxiously awaiting our Tyler to arrive.  The amount of worrying we did was overwhelming.  As we were reaching the final days and hours of her pregnancy, we began hearing Ozzy's latest release on the radio "Mama, I'm Coming Home".  And when we went to take Tyler home from the hospital, the song was playing again.  All we wanted in the entire world was to take our baby away from the hospital, and to the safety of our home.

"I've seen your face a thousand times
Every day we've been apart
I don't care about the sunshine, yeah
'Cause Mama I'm coming home"

We all interpret songs to our own personal situations and these verses said to us "we don't care about anything else right now...our boy is coming home so we can face things as a family".  It was a powerful window in time that was forever marked by that song.

In 2018 we had the opportunity to see Ozzy in concert for the first time.  At about the mid-point of the show he played "Mama, I'm coming home".  I wrapped my arms around my wife and we stood listening to him perform Tyler's anthem.  It was a touching and surreal moment for me, as I'm sure it was for her.  As with so many things, it allowed Tyler to be right there with us.

Unfortunately it sounds as though Ozzy will be cancelling any hopes of touring in the future due to health problems.  There are times that his posts seem to suggest that he is ready for the final stage of life to begin.  Its just nice knowing that whenever I feel like peeking into that little window of our life in 1992, Ozzy will be there to sing "Mama, I'm Coming Home" for me.

Be well and God bless.    Tom

Monday, February 17, 2020

Happy Birthday Tyler

In just a few days, it will be Tyler's 28th birthday.  Gas prices were $1.13 per gallon.  The mall of America was just opening its doors.  The police officers who beat Rodney King were acquitted.  I had a mullet.

Over the last three decades we would experience countless changes in our own little world, as well as the vast world around us.  There would be additions to our lives, and there would be loved ones that we would lose.  I would also lose the mullet.

I want to fill the blog today with wonderful memories of these years with Tyler.  He deserves happy thoughts and happy memories more than anyone other person than I have ever known.  His courage and fortitude are remarkable. 

I remember when he was very small he would pretend to wrestle with me.  We would roll around the floor pretending to bodyslam and pin one another.  We would bounce on the bed pretending to dive onto each other.  He would put my shoulders to the mat and count "2...2...2...2....3!"  I just laughed out loud thinking about how he would scramble up on the couch with me laying on the floor and launch himself down onto my chest.  It might have looked rough and crazy, but I was always protecting him 100% and he trusted me 100%. 

I remember the years of walking with Tyler up on my shoulders.  He loved to see the world from there.  We walked through malls, the York Fair, and the Ocean City Boardwalk.  I even walked an 8 mile fundraiser with him on my shoulders.  I'm so glad I was able to do that for so many years.  I got to hold onto him as long as I could, and he got to see the world taller than anyone else could.

I remember the trips to Ocean City with him.  He loved to be pushed in his stroller along the boardwalk, sipping on a Dumsers milkshake, and watching the people go by.  Sometimes I would enjoy doing this alone with him so I could feel his peace and the peaceful tempo of the ocean.  So rare it was to feel as carefree and normal as I would feel at that time. 

I remember trips to Disney World with him.  It was so fun to watch him giggle as the rides would push him around in his seat.  He would love the Test Track, and Tower of Terror, and Splash Mountain.  At the end of the day he would bust a gut laughing at the booms of the firework displays. Best of all, we all got to spend quality time with him...something that we will never forget.

I also remember so many little things....the walks, playing basketball, him jumping into the pool into my arms, blowing bubbles, or just laughing at something silly I did for his amusement.

Every positive memory of these 28 years will be cherished forever.  Here is to you, my son, who I have loved with all of my heart since before you were born.  May you have good health and peace for the next 28 years and beyond.


Monday, February 10, 2020

Tyler Update

Some months ago Tyler's Neurologist informed us that he would no longer be able to keep Tyler as a patient.  This did not really come as a surprise to us since the doctor was a pediatric doctor and was not supposed to keep him once he became an adult.  Dr. G had had Tyler for about 15 years when he was supposed to give him up, but because we had all grown so close, he wanted to keep Tyler until he was forced by his group to do so.  We were saddened by the news, but we had an additional 5 years with him that we shouldn't really have had.  We moved on to a doctor closer to home, and one that works well with Tyler's psychiatrist.  

Here is where it gets tricky...I'm glad now that it happened.  Dr. G was an amazing friend and advocate for Tyler, so there is certainly no reason to regret a moment of that relationship.  BUT, his new doctor has a different approach to medications which may be key in moving Tyler in a better position for the long run.  As soon as we started to see the new doctor, he wanted to get Tyler off of Dilantin.  Tyler has been on Dilantin to repress seizures for nearly a quarter century.  Unfortunately, Dilantin is known to have long-term side effects that we believe we are seeing over the last couple of years.  We feel that this was the time to take a calculated risk and see if we can bring him down off of it.

Comfort level is a funny thing in our special needs world.  On one hand, it provides a lot of what a special family needs.  There are tons of benefits to a doctor knowing your child over a long period of time, and taking a personal interest in their care is a rare and wonderful thing.  But there have been times where it allowed us to be content and more hesitant to try to make changes, and that has significant downside too.  I think I was guilty of this when looking back.  

When Dr. G told us we had to part ways, things were pretty upside-down anyway.  Tyler was struggling with behaviors, I was struggling with the psychiatrist's office, and things in generally had gone to crap.  It turned out to be the perfect time to decide to shake things up.  Now we are trying a bit of a new path.  Its not to suggest that the old path was wrong, its just a different methodology.

As for Tyler, he is nearly off of the Dilantin and so far (knocking on wood) he hasn't showed any ill effects.  We decided to ween him down VERY slowly, and to do tests before, during, and after the change to make sure his body didn't suddenly want to jump back into the seizures again.  Its still a risk, even though we have taken as much consideration as we can.  We saw him yesterday and the smiles were there and he looked healthy.

Please take heed from the lesson I am learning through this, getting into a comfort zone is GREAT, but make sure there are still other influences pulling you to keep stepping out of it once in a while.  

Be well and God bless.    Tom

Thursday, February 6, 2020

Our Hypocrisy

Let us not forget that our children hear everything we say.  Whether they are "typical" or "special needs", they hear our words and feel our tone.  They look to us to guide them into a very big and very scary world.  They look to us to teach them right from wrong and to show us how to treat one another.

Let us not forget that our children watch every move we make.  Whether they are "typical" or "special needs", they watch our body language and they feel our vibes.  They look to us on how to make peace in a world that continues to offer little comfort.  They look to us to teach them that strength of character is what heroes are made of.  Instead...we give them this:

We tell them that human life is important, and yet we accept that human trafficking is thriving in the US.  We accept that opioid addiction is crushing people in every community.  We accept that veterans are killing themselves every single day.  We accept that our teachers are forced to spend their own money on supplies.  We accept that mental heath care is failing miserably.  We accept that millions of people live without insurance, health care, and the medication that they desperately need.  We accept that millions of people in our country do not have adequate food.  We accept that our actions are contributing to the death of our own planet.

Instead, our children watch us destroy one another.  They watch us as we mock one another. They hear us call each other demeaning names.  They watch our elected leaders act like petulant children.  They watch the bullying and shaming on Twitter.  They play video games depicting first-person-shooter scenarios beyond their emotional capabilities.  They are inundated with conflict, and more conflict, and still more conflict.  Respect is an afterthought.  Kindness and humility are treated as weaknesses.  Authority is questioned and cut down.

And then we look them in the eye and tell them to "do the right thing".