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.


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, 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 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 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 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 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 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 
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  Smile every day like you did on this day.

Be well and God bless.    Tom

Monday, May 20, 2019

Living in the Middle

There was a period of time where we raised Tyler in the non-typical world, along with Sam in the typical world.  If you take that last sentence literally, we were trying to live in two worlds at the same time, which is next to impossible.  This may have been one of the very reasons that we knew we had to secure a future for Tyler that would allow him to live life in the non-typical world.  It also shined a light on why the rest of us needed to secure a future in the typical world.

I believe there has to be an ability to bring those two existences together...a meeting in the middle if you will.  The amount of "middle" you can find may largely depend on the severity of the disabilities, the family dynamics, and so on.  But even where there is a "middle", there will always be two very separate circles.

There are families that live for many years in the middle, and can do so with a great amount of success.  But as this graph illustrates, the middle is often the smallest area, and for many families the most difficult to maintain.  When life is riding in the middle things are in harmony.  When the two circles pull apart, things can go wildly out of balance.  When the balance shifts too far into the typical world, the non-typical person can become lost, frustrated, confused, and more prone to act out.  When the balance shifts to far into the non-typical world, the typical family members can become left out, isolated, and depressed.  In our case we tried to live most of our lives in the non-typical world to accommodate Tyler as best we could.  Unfortunately that also lead to our own issues that went unaddressed.  Without a doubt we had times where we found success in the middle.  But it never lasted long, and the times outside of the middle were brutal.  The hardest thing for me to understand at that time was that when we were living in the non-typical circle, we were not doing anyone any good.  We we over-accommodating him, and underachieving in nearly every aspect of our lives.  Worse yet, attempts to pull him into the typical world were mostly met with disaster. 

Our decision to move Tyler to a residential home was to create worlds that we could all live in, and a middle that we could maintain more consistently.  He had to have a living condition that was tailored to who he really is, and not trying to force him to relate to a world he didn't understand.  We had to have a living condition that allows us to be parents to Sam, be a married couple, conduct ourselves as more functional workers, and focus on our health as we enjoy our middle-age years.  Our middle is now seeing Tyler at church on Sunday's, and taking him out for pizza or Mexican food.  We spend short, but quality time there before everyone returns to their circle.

If you are balancing two worlds, carefully examine where your middle is.  If you can live comfortably in that zone, you are probably in a healthy place at the moment.  But always remember, circumstances will dictate how much room you have in the middle.  If you are living in a middle which has squeezed you to your limits, or you find yourself bouncing wildly between circles, you are in a dangerous place.  Don't be afraid to find alternative ways to broaden the middle, or if necessary, redefine the circles to create all new worlds.

Be well and God bless.   Tom

Monday, May 6, 2019

Tyler is Struggling

Tyler is struggling.  

A few weeks ago his demeanor turned sour.  Right now he is basically unhappy with everything and everybody.  So much progress that had been made with healthy interactions has been lost once again.  

Obviously the worst part is that my son feels bad.  Something is wrong and I am powerless to fix it.  I have passed on a few ideas of what my be contributing to his mood, but without his ability to give us feedback, it is simply a crap shoot.  Its akin to when a baby cries and cries but every remedy you try just leads to more crying.  Only with Tyler when he is miserable he can effect those around him in the same way.  He becomes very difficult, almost defiant.  It's so sad because that is NOT who he is.  Tyler is my grinning young man.  He is reacting to something that is way off.  Is it physical?  Perhaps something like a UTI or allergies?  Is it a form of depression that he can slip into?  The truth is that we just don't know.  

What is happening is not exclusive to the special needs parent.  There are parents right now, reading this, that are watching their children struggle.  Perhaps it is a problem with addiction and their child cannot find their way out of it.  Or maybe it is dealing with depression, bi-polar, or schizophrenia.  Worse yet, perhaps there are parents dealing with a child that has been lost in one way or another.

As Tyler's parent I still feel responsible for his happiness.  I still feel that I have to figure out how to make him fit better into this world.   I have to reach out to him and make it all work out, somehow, some way.  It's my job to have those answers! heart breaks at the reality of the situation.  I don't have superpowers any more than his caregivers do.  We are all rowing the same boat looking for an answer that we may not ever have the ability to figure out.

When Tyler struggles, I struggle.  Its a struggle to stay on task and continue to move forward with life.  Of course my brain tells me that things will turn around, and that we have a great staff, and that I need to have faith and keep moving forward.  But my heart still bleeds.  And as long as he is unhappy, I can't be happy.

And so it goes for parents who care for their children with all of our heart and soul.  We go on to work and concentrate as hard as we can, knowing a piece of us is not quite there.  We smile or laugh, and sometimes have brief moments where the sadness goes away, but it doesn't last.  We hold onto hope that the next day will hold the very answer we are looking for.  We hold faith in one hand and doubt in the other, wondering why our child is made to suffer.  We question what purpose our child's pain could possible serve.  We struggle.

For those of you joining along side of us in our struggle, we feel your pain.  We pray for you and your children.  We have to keep believing that in this world, or in the hereafter we will find peace for our children and peace for ourselves.  

The struggle doesn't last forever.  It can't.

Be well and God bless.   Tom  

Thursday, April 25, 2019

The Moon Picture

One bit of feedback I frequently receive from people who read this blog is how much they like the picture of Tyler pointing to the moon.  They want to know if there is a story behind the photo.  And I suppose that there is...

Taking a vacation with Tyler certainly had its challenges.  There were always so many logistics that it made it hard to relax and truly unwind.  For Tyler, keeping him at a comfort level where HE could relax was just as much of a challenge.  Even a day at the beach day at the beach.  Let me give you a few examples of how a family like us has to think when taking a seemingly simple trip to the beach:

  • If we stay too many days he will get anxiety due to missing his things and routines
  • On the ride down we can't stop at a public restroom that will be crowded (he will lash out) or dirty (he touches everything)
  • We have to pack bed protectors and sheets so that if he has an accident overnight he won't ruin someone else's bedding
  • All familiar toys and DVD players need to be packed, along with wall and car chargers
  • Eating out in restaurants will be done early in the afternoon prior to dinner crowds
  • Shopping will be done during the dinner hours to avoid the evening crowd coming in
  • We know how to change a pull-up while driving on the freeway
I'm sure if I thought long enough I could come up with 20 more, but you get the idea.  It never deterred us from going, it just made us go to places that we knew we would have the best chance of success for all of us.  After all, it was important that Tyler have every opportunity to enjoy some sun on his face, and toes in the sand.  

Back to the photo....Myrtle Beach was always his favorite place other than home.  He got familiar with the condo we were using each year to the point where he recognized it and he felt a comfort level that helped everyone.  When thinking about it, it normally went pretty well and I can't think of any beach-related horror stories other than one mild jellyfish sting when he was little.  One of his most pleasurable moments came around dusk.  We would be done with dinner and a little shopping, and would come back to the room for the evening.  Traditionally we would head down to the beach, which would be absolutely empty, and just wander around.  The kids would splash in the water and explore.  Tyler liked to wade out just a little way, and look out over the horizon.  On this occasion the moon caught his eye.  He stood smiling, and over and over announced "Moon!" as though welcoming an old friend.  I snapped the photo of my boy in a truly happy and content moment.

The beach always had that effect on Tyler.  He obviously felt a comfort and a unity with it.  There was no fear, and really no threat that he would wander too far or fall into the surf.  He seemed to understand the relationship he had with the ocean, and respected it.  It was a fascinating relationship that I won't ever understand in quite that way.  I believe the sound and subtle movement are soothing for Tyler (as I understand is the case for many children on the spectrum), and I wonder what else happens in that mind as he stands there.  I'd give anything to hear what he is thinking so I can understand it.

As I've written, a very important goal to me is to someday spend my days close to the beach.  I too feel a kinship and peace with the ocean that is hard to explain.  And now that Tyler has moved away, its a place that I feel very close to him.  Its something that we shared and it may be the only place and time on this earth that we both found peace at the same time.  

Be well and God Bless.   Tom

Saturday, March 16, 2019

Tribute to Pastor Dave

Recently we have learned that our Pastor has decided to continue his work in the special needs community and he will be leaving our church.  We all view this as a ministry and an extension of what he taught us every week within the church walls.

Pastor Dave and I met in an organic way, just two guys taking walks around the neighborhood.  Little did I understand that my walk with Tyler would lead us to him and his church.  Dave and I immediately discovered we had a lot in common.  We both had a passion for helping the special needs community, we both love football, and we both want a peaceful world for our children.  And like most people we have very profound differences, especially politically.  But we want the same things in life which is far more important.  Most of all, we both love Tyler and what is best for him.

Our impromptu meetings in the neighborhood turned into Dave introducing us to what would become Tyler's care agency.  My trust in him allowed me to follow his recommendations, which became the very foundation of Tyler's life today.  For this reason alone I owe him so much.

Once Tyler became established in his new home, he started attending Dave's church on a weekly basis.  Within a few months Dave asked if he could baptize Tyler.  We were happy to agree and attend the ceremony.  We immediately felt the incredible inclusion and love that the congregation has for Ty.    This lead to the girls and I attending each week, which has now evolved in my in-laws doing the same.  It has also lead to a few dozen people receiving new study bibles through Tyler's bible program.

As you see, Pastor Dave has touched our lives in more ways than we can count, and we are thankful that he will continue to be part of our lives.  But most of all, I'm proud to call him my friend.

Be well and God bless.    Tom

Sunday, March 3, 2019

But Now What?

Tonight I will tackle an extremely difficult subject.

When Robin and I found out, in 1991, that Tyler was likely to have severe disabilities, we were given the option to terminate the pregnancy.  His prognosis was dire.  Fortunately there was no known danger to Robin regardless of our ultimate decision.  For her and I it was a quick decision....we would love and protect Tyler regardless of what that meant.  I've told that story and some people ask...would I make the same decision all over again?

I would.  And I would love to stick out my chest and claim I feel 100% committed to that and always have been.  That would make me a liar.  I've had doubts, and sometimes I still do.  Consider this:

We are better at keeping people alive medically than we are caring for them.  In other words, science continues to advance to make life longer, or to save more distressed babies, but we struggle to maintain the resources needed to ensure quality of life.  

And what happens when a severely disabled child is born to parents without the physical, financial, or emotional means to care for them?  Often what follows is a lack of care, and the high possibility of neglect and abuse.  And please take my word for this, there are no lines around the block to adopt special needs children. 

Is there a "natural order"?  Until perhaps the 50's, children and adults with severe disabilities had a limited life span.  Was this the way God and nature intended it to be? Have we become so obsessed with medicine that we have taken those decisions into our own hands, beyond what was intended?  This ties into my first point, that our desire to keep a heart beating has outgrown our ability to care for those souls.

On the flip side, we never truly KNOW what will happen.  Afterall, Tyler was predicted to die, or never speak or walk, but he has exceeded expectations and touched thousands of people.  He experiences love and warmth.  Without him the world would not be as bright.

My answer remains yes, I would do it all over again because for US it was the right thing to do.  That said, I would never suggest that everyone had to make the same choice.  If Robin's life were in danger and we knew Tyler was in grave peril, I may have had to make a very different decision.  I wish we lived in a world that guaranteed special needs persons had unlimited love, housing, medicine and care, but we don't live in that world.  If we did I think these decisions would be much more simple.

My hope is this: when faced with a decision like Robin and I faced, that every consideration is carefully considered.  That those parents seek help from family, ministers, doctors, and social workers to have all the fact.  I hope that selfishness gets pushed aside and every opportunity is given to that child and mother.  But no two circumstances are the same, especially when there are substantial medical issues that complicate things.  I don't believe there is a one-size-fits-all answer.  When an agonizing choice has to be made, its up to that person to have to accept it within themselves and before God.  

Be well and God bless.    Tom

Monday, February 25, 2019

So How is Tyler?

We are so thankful that so many people follow Tyler's story.  Hardly a day goes by that someone doesn't ask me about him or tell me that they are praying for him.  As I've said many times, its incredible that Tyler reaches so many people through this blog and through his Study Bible program at church.  I'm merely the hands that type his inspirational messages.

So just how is Ty-guy doing? 

We got to spend time at church with him yesterday, and then took him to his favorite pizza place for lunch.  Shout out to Marinos Pizza in York, Pa. for having a welcoming venue for us to spend some quality time with him.  One awesome thing that has happened recently is that Tyler doesn't mind if Robin sits with him during the church service.  Previously we would sit in a different area so we wouldn't disrupt his routine and possibly make him too distracted to make it the entire hour.  A few weeks ago Tyler came in and Robin sat with him just to see how that would go.  She has been sitting next to him ever since (I am running the video board so I get to watch this from afar).  This is a nice step forward for both Tyler and Robin!

We had a terrific time eating lunch with him.  He seemed to enjoy our company and lingered for quite a long time.  He ate a lot of pepperoni pizza, drank a lot of soda, and had a fair share of onion rings.  He got to do his favorite stim, running his fingers through his Mom's hair.  He also giggled at some of the crazy idiosyncrasies we have always done.  He looked very clean, healthy, and happy.  

His caregiver, Miss R, explained that he has been doing well now that we are headed toward spring.  Tyler suffers terribly from a seasonal disorder which lasts from about November first until March first.  We don't know WHY it happens exactly.  Could be the cold weather, lack of natural light, barometric pressure, or some other force that only his brain experiences.  Whatever the reason, he enters a very dark period for these 4 months.  He is generally more tired, grumpy, defensive, and unhappy.  Some years are worse than others, but that time period is about as consistent as it gets.  Judging by his demeanor yesterday, he is feeling pretty good right now.

When it comes down to it, we have to have faith that he is being watched over, even though I am not the main person doing the watching anymore.  He has an extraordinary group of caregivers and administrators who watch over him.  God watches over him and uses him to carry messages of love.  And of course, his family is always here to watch over him.  

As difficult as it is sometimes to relinquish that "control", we have learned to allow him to live in his world now.  As long as he is healthy and happy we will continue to do so.,

Be well and God bless.    Tom

Friday, February 22, 2019

Happy Birthday Tyler

Today is Tyler's birthday.  Today I celebrate him and everything we have accomplished together as a family.  

When I use the word "family", I mean Tyler's family...those that love him and have done things to make his life healthier and better.  The list would be too long to get into, but he definitely has found a village that rallies around him, protects him, and shows him how much love is possible.

Tyler doesn't speak.  Yet he tells us more about ourselves than any typical person can.

Tyler can't tell jokes.  Yet his smile and his laugh are pure and infectious.

Tyler can't express himself.  And yet the love he gives is sincere and heartfelt.

Tyler is a blessing from God to show us how beautiful life can be, how heartbreaking life can be, and how much we should value family...all family...those by blood and those who are not, because family is what makes us whole.

Happy birthday son.  Love...Daddy

Wednesday, February 13, 2019

My Honor to Honor Him

A week ago I attended the funeral of a terrific lady who I considered extended family.  She was 90 years young and had what appeared to be a very long life of love and family.  There were stories of places she traveled, and experiences she shared with her loved ones.  The service was very nice.  The thought I had as I sat with her immediate family was how clearly they were paying respect and honoring her that day.  She was surrounded by flowers, family photos, and a few small items that were precious to her in life.  I thought my mom and dad 2.0 did an incredible job in the closing phases of her life.  It can't be an easy task to do justice to 90 years of living in one service, and they did it elegantly.

It made me think about my relationship to Tyler.  Obviously I love him as my son, but what I have discovered is that there is an extreme amount of importance to him being honored as a person.  In other words, there is an element where I understand my role in protecting his rights as a man.  It is left to many of us, but I especially feel responsible for being a steward to what is important to his wellness.

I also happened to be watching a documentary last night which showed caregivers making incredibly difficult decisions for their loved ones.  One gentlemen said:  "I promised to always be right".  It struck me how profoundly that statement summed up the feelings of a caregiver making life-and-death decisions.  There is the constant battle between giving in to emotions, and doing what is best based on facts and evidence.

I imagine that every caregiver is just like me...flawed.  I find it very easy to make my own mistakes and poor judgments no matter how hard I try to avoid normal pitfalls.  But I've always made that promise to Tyler, that I would always be right where it concerned him.  Have a always been right?  Not even close.

But lets define what "right" really means.  After all, the outcome of our decisions are sometimes never known.  Or the outcomes can look different over time.  More often, there is both right AND wrong in each side of our decisions.  So what is right?  Right is looking you loved ones in the eye and saying, "what would you want for yourself?".  Right also means being willing to gather all of the facts, weighing the emotions, and having faith.  

Don't worry that every decision is right, because that is not achievable.  Instead, strive to make your heart and mind right when making those decisions.  Be right with yourself, be right in your faith, and be right with your loved one.  Then walk bravely in your choices, and don't look back.

Be well and God bless.  Tom

Sunday, January 27, 2019

"I'm so sorry"

No...I haven't offended someone with something I have written (that I know of anyway).  It's part of a conversation that goes something like this:

Me - "My son is severely autistic"

Other Person - "I'm so sorry"

I understand the context which the person is typically saying this  They are usually saying that they are sorry that some children are born with debilitating conditions.  Or they are perhaps saying they are sorry for the extra stresses they imagine accompany raising a child with autism.  I take the statement as one of empathy and compassion.

It's that next statement that makes me wince...."it must be such a burden".  I try to take a deep breath and remember that the other party is not trying to be as insulting as that sounds.  But what I hear is:  HE must be such a burden.

The dictionary definition uses the words "load", "forced to carry", "oppressive", and "heavy" when explaining what a burden is.  And the feeling that the word carries is one of loathing and regret.  

I've encountered many emotions in my 27 years as Tyler's dad, but loathing and regret have never been included.  I see Tyler as a young man before all else.  Not an autistic young man, just a young man.  His autism may be pervasive but it does NOT define him.  It is what he has, but it is not who he is.  

I too am sorry.  I'm sorry that he won't ever have a wife, or children.  I'm sorry that he has anxieties and pains that we can't truly understand, much less alleviate.  But I have never, ever seen Tyler as a burden.  He is my son.  He is a charming and handsome young man.  He appreciates love and he gives love.  He deserves to live in dignity and respect.  Most importantly, despite his disabilities, he soldiers on...he attends his daily workshop, he attends and donates to his church, and he lives peacefully in his home.  He carries his own weight in this world and then some.  Of course he needs assistance, but he is not a burden.

So when someone wants to show sympathy to the overall circumstance, accept that for what it is intended to be.  But if the word "burden" comes across, I suggest you think twice before letting it go by.  It may be the perfect time to gently but firmly defend the dignity of your loved one.  If they are at all like my Tyler, they've earned it.

Be well and God bless.    Tom