Wednesday, August 31, 2016

Poem About Time

It doesn't matter who we are
Where we work, or rest our head
Nor does it matter lessons learned
Shows we've watched, or books we've read

Time shows not a bit of care
It marches to an unstoppable beat
And we are merely blades of grass
Trampled beneath its pounding feet

We curse the time for all it does
Yet pray that we may have some more
It merely smirks and marches on
The desperate pleas it must ignore

We gray, we tire, we weaken
We may even lose the will to try
But time will not miss a step
And won't think twice to pass us by

Determined we must rise again
Refuse to let time have its way
Accept the fact the past is passed
And make the most of every day

Rise and meet time face to face
Fight to make each minute last
Fill them all with joy and love
So time won't pass by so fast

They say time waits for no man
I suppose this must be true
The better strategy my friends
Make time catch up to you!

Be well and make every minute count.  Tom

For Ronnie

This post is dedicated to a late dear friend of mine, Ronnie.

Ronnie and I bowled together in the early 90's.  We were wonderful friends from the start.  Tyler liked him too as Ronnie was an open and jovial spirit and loved to interact with others.  Ronnie would laugh and laugh by getting my son to imitate Ric Flair.  "Woooooooooo" he would say.

Now being in my 20's I was not what you might call a sentimental guy yet, and Ronnie was perhaps 20 years older than me or more, which made him look at life differently than I did.  Every time I saw Ronnie he hugged me, and every time we parted company he hugged me again and told me he loved me.  At first this made me a bit squeamish just for the simple fact that we were GUYS and guys don't hug and say I love you to each other!  Guys grunt, fart, and talk about boobs which means they love you.  Its all in the translation, you see.  But Ronnie changed me forever because I learned to appreciate that from him and understand the power that comes from expressing yourself honestly.

Years ago Ronnie became sick and passed away.  And even though we saw each other only weekly mostly through bowling, it left a hole in my heart.  But I have never, ever forgotten what our friendship taught me.  Reaching out to people is a wonderful thing.  Saying "I love you" is a wonderful thing.  Embracing someone is a wonderful thing.  These are the most precious gifts that we as people can give to each other.

I currently have a friend who has been hospitalized with complications from a condition he has had all of his life.  We have been friends for a relatively short period of time but he is important to me. We talk about sports, we take exercise walks together, and we just support one another.  We are quite a distance apart due to me traveling but I'm texting him a few times a day and offered to help with the kids or house or whatever until he is back on his feet.  He would do exactly the same for me I know it.

We all know people that are in need because we ALL have needs.  We all have struggles.  I believe that the more we change the macho man culture the better.  It is not a weakness to reach out to other people when you need help, it is a strength.  It is not creepy to embrace another man, it is a show of strength and love.  I write in this blog as my way to reach other people and I hope and pray that it helps.  Its my way of hugging all of you who struggle with special needs care, or struggle as a parent, or just struggle with life.

I hope that by putting away male stereotypes and reaching out to others the best way I know how, that it may be an inspiration for you to do the same.  That is how Ronnie did it for me.

This hug is for you Ronnie.  And this "WOOOOOOOOOOO!"  I love you.


Saturday, August 27, 2016

Aug Tyler Update

Good morning!

We got some very interesting updates about Tyler this week that I would like to share.

He visited one of his favorite people this week, Gina, to get his hair cut.  Gina has the personality he loves; loud, honest, and unfiltered.  But also kind and warm.  She said she is so impressed by his demeanor now, he seems happy and calm.  As always he ended the appointment by giving Gina a monster hug.

I also touched base with his day program.  He is being introduced to new activities which seems to be working nicely.  The staff shake-up a few months ago has not seemed to caused any permanent change in his ability to thrive there.  By all accounts he looks forward to being there and is comfortable with his surroundings.

The home also reports that everything continues to be going smoothly.  His health has been good, and he had an annual physical which showed no issues.  A dentist appointment was also done with good results.  Even with staffers taking vacations he has done well with those standing in.  His medications have been effective and right now we are holding on any changes since he is so stable.

With his church community, residential team, medical team, and day program team caring for him with such devotion we have incredible faith that he has everything he needs.

Be well and God Bless.  Tom

Wednesday, August 24, 2016

Take the Time

Good Afternoon.

As caregivers there is often a degree of isolation that we experience.  It starts off rather slowly and innocently enough, but then it starts to grow.  Those of us who have special children for instance will be able to function somewhat normally when they are young, but then as time goes on, and the child becomes larger, and the challenges become more difficult, we get more tired.  We can begin to seek the isolation perhaps without realizing it.

When Tyler was little, we used to visit friends houses, go to gathering, the mall, and so on. It was easy when he could be placed in a stroller or up on my shoulders.  He loved the world and all the world loved him because he was small and cute.  As he got older and more mobile we started to host more activities at our house.  After all if he was going to get frustrated and kick a wall it might as well be OUR wall and not someone else's.  Eventually this isolation crept over much of our lives, much like ivy taking over a wall.

I mention this because last night during my current trip I had dinner with a friend that I genuinely care for and respect as a person, father, and man of faith.  We spent nearly 3 hours eating, talking, and sharing our stories about our families.  What made it so interesting was that we each actually come from different political perspectives and yet that mattered not one bit the entire time.  We talked about our children, schools, the blog, vacations, and current events as 2 men hoping to be good examples before God.  There were times that we laughed and other times that we became choked up.  I think we both left feeling better than when we arrived.

It was such an important reminder to me how important these relationships are in our lives. It doesn't matter if right now you are caring for a child with autism or an adult with dementia, or anything in between....the principle remains the same.  You HAVE to have relationships that make you happy and uplift you.  If the best you can do right now is invite that person over for a cup of coffee, do it.  If you can manage one hour to meet them for dinner, do it. Take the time.  When you listen to someone else you change your own perspective, and you change theirs.

TAKE THE TIME.  Please.  Send a text or an e-mail to someone that you are inspired and uplifted by.  Even a few minutes of good fellowship will feed so much energy into your heart and soul that it could have a great impact on your life.  

Be well and God bless.  Tom

Monday, August 22, 2016

Back To School

Good Afternoon.

We sent our second grader off to school for her first day today.  As she stepped on the bus we stood back and hoped that every bit of love and protection in our hearts is following right along with her.  We try to teach her right from wrong, and how to be respectfully and kind to those around her, and today she once again sets out into the world to make us proud.

I think today is one of the most entertaining days for social media.  So many of our friends post pictures of their children getting ready for their first day of school.  It shows that no matter how crazy our children drive us, we love them and we take joy in marking their growth.  

I'm posting this today because it inspires me to see so many parents showing love for their children.  We know single Moms and Dads.  We know families who the parents have disabilities, families with disabled children, racially mixed families, and same-sex parents. Parents of police officers, dancers, hockey players, and military personnel.  Parents on the east coast, middle, and western coast of the country.  All of us are different in almost every single way...except one:  we love our children unconditionally.

Imagine our world right now if every child had a parent or parents that made sure they were loved and nurtured.  So many of our communities are facing incredible difficulties for a host of reasons, one of which is children being raised by absent parents or by other relatives because they have been cast away from their parents.  We need to appreciate those who do step in to provide for those children who are otherwise not being provided for.  After all, children should learn the world from their parents.  When they see their parents treat people with respect, they learn to be respectful.  When they feel secure, they will be likely to want to contribute to a better world.  But when children are abused, ignored, hungry, and alone, they feel the world has turned away from them, so they turn away from the world.

Whether you are a special needs parent or a typical parent the message is the the model for which your children view the world.  Teach them self-respect and respect for others.  Give them security, trust, and love so that they will give the same to those around them.  Be their hero.  You don't need money in order to give them everything they need.

Good luck and God Bless.  Tom   

Friday, August 19, 2016

Our Election

I don't believe I'm saying anything shocking and controversial by declaring this election to be very distressing on everyone.  I do not ever intend to use this blog as a forum to be political or sway anyone's opinion, as I think that would be wrong.  Everyone has their own right to vote their heart and I respect that.

The one thing I will address is my dismay and sadness over a candidate imitating a disabled man in front of a crowd of people.  As the Dad of a disabled young man I believe I have the right to voice my opinion on that. 

There is NEVER any excuse to make fun of a disabled person, especially in public, and most especially when running for public office.  Yet I have never heard an apology, any remorse, or any attempt to assure the special needs community that they will be treated with dignity and respect.  To me that is a frightening thing.

Those of us who have a family member with special needs understand the stares, snickers, comments, and imitations.  Make no mistake...they HURT.  There are few things that ever cut me as deeply as knowing that someone felt it was ok to disregard my son and treat him as though he were beneath them.

Twenty years ago if a candidate for office was seen doing something like that, it would be over no questions asked.  But today we seem to have a much different standard, as though we can ignore things we don't want to see in favor of what we do.  So long as something confirms our own beliefs we embrace it and then pretend the rest don't exist.  As long as the perceived "misstep" doesn't personally involve our circumstances we can just wash it away.

Personally I would never associate with any person, in any way big or small, that would feel its ok to publicly humiliate a disabled man.  In my eyes he humiliated my son at the same time, and all of our special sons, daughters, siblings, and parents.  

At some point we have to bring the line of decency and humility back to a level that everyone can take pride in.  It has to start at the top.  If we can't hold presidential candidates to a higher level....then who?

Be well and God Bless.  Tom

Olympic Thoughts

Good Morning!

Sometimes current events make me reflect on the very soul of who we are as people.  I often write about how we treat each other as people, and how very important this is in regard to our special needs family.  I think when we are insensitive and uncaring in one respect it makes it easier to be the same way in the next.  

I have been watching the Olympics this year.  And as the games have continued there has been an unfortunate theme; a shocking lack of sportsmanship.  We have been watching athletes wagging their finger at other athletes, calling each other out for doping, refusing to shake hands, and worse.  Hope Solo called her opponents "cowards".  Ryan Lochte went out making trouble and then concocted a story about being held up at gunpoint, only to run back to the US and leave the rest of his buddies behind.  

It would be easy to dismiss this as boorish behavior by young athletes but I think it goes far deeper than that.  It shows that we continue to drift further away from empathy and sensitivity.  That striving to be the best is an excuse to act any way you please.  I always voiced the same opinion about Tiger Woods. Being the best in the world and being the most visible player in the world should mean you hold yourself to a much greater standard, not excuse you to be at a much lower one.

So what does this have to do with special needs?  I do believe that each time we accept behavior that degrades or disregards someone else, we make it that much harder for special families to gain the respect that they need.  One form of disrespect is never far from another.  Especially when our children are watching.

Athletes like Hope Solo, Ryan Lochte, and others should be immediately and publicly removed from further Olympic involvement.  Sponsors should declare such behavior as unacceptable and pull any endorsement.  The Olympic committee should uphold a code of conduct that any athlete or team that is found in violation should face disqualification and loss of award.  There has to be accountability.  

Be well and God Bless.  Tom

Saturday, August 13, 2016

The "G" Word


It's ugly.

The very sound of the word is like a punch to the stomach.  The feeling it gives is even worse.  No matter how much I feel as though we have done all of the right things, and no matter how well things are working at the moment, the guilt never completely goes away. And no matter what I am doing there are always those times when it's just me, alone with my thoughts, quiet, and it finds it way in.  

Did I mention.....GUILT IS UGLY

That feeling of guilt also shows how much I care about my little man.  It shows that I wish for all the world I could be the hero for him every day.  It means I care about his well being more than even my own.  

Feeling guilt is one thing but acting on it is another, and most usually a mistake.  Guilt is primarily a selfish feeling that asks us to make ourselves feel better rather than staying on an objective course.  Guilt is NOT objective.  

When I feel that ugly feeling I do try not to ignore it, but rather I think it through.  I basically give it one free pass to rattle around my brain.  And then comes the important part; I remind myself that I love him and that I have done absolutely everything I've known to do the very best way I could.  And then....I let it go and go on.  And though I know there will be another round of guilt at some point, I will be ready and it won't get the better of me.  No matter how ugly it tries to be.

Be well and God Bless.  Tom

Wednesday, August 10, 2016

Inspiring Church Story

I have a short story today....but a good one.

We have been so pleased that a big part of Tyler's support system has been his church community.  Pastor Dave is a man that I have tremendous respect for.  Its very obvious that Pastor Dave loves and wishes to serve his fellow man, especially those who are disabled or disadvantaged. He has become a key supporter to Tyler.

Pastor Dave relayed to us that the congregation was participating in communion this past week.  Typically this activity would be brought to him rather than having him come up and do it.  On this day Tyler decided he would come up and try it.  He was told the meaning behind what he was doing and that it stands for the unequaled love that Jesus has for him and the sacrifice that was made in the name of that love.  

Tyler reacted in a way that had never been seen by his church family.  He smiled and blew a kiss, perhaps to Pastor Dave, perhaps simply because the feeling touched him and moved him.  I suppose there are just some things we don't really need to know.  What they did know is that Tyler felt the love at that moment and he responded to it in the most loving way he knew how.

Perhaps it is a debate for another blog entry, but someone could question the value in Tyler participating in communion, being baptized, or even attending church.  After all, these are all things that require a level of abstract understanding that we are fairly sure Tyler does not have the capacity to grasp.  But I would offer this; Tyler does have the capacity to grasp unconditional love, respect, acceptance, and devotion.  These are what I believe to be the fundamental beliefs that make us children of God.  So if by participating in church he does nothing else but to feel the love and comfort around him, he is experiencing every bit of what church SHOULD be.  

This is just another part of his walk.  He may not understand that he is walking along with Christ but every time he smiles and loves and participates with his church community, God is with him and walking right beside him.

Be well and God bless.   Tom

Saturday, August 6, 2016

Treating Bipolar with Autism

Good morning.

In recent years I had suspected that Tyler was bipolar.  But an issue we faced was we only had 15 minutes with his psychiatrist once every 3 months, which makes it extremely difficult to talk about a brand new diagnosis.  We did talk about it a few times as I was feeling more strongly that this was something that he was going through.  I didn't have any other explanation for why his routine would remain exactly the same all year long and yet he would suffer periods of what seemed like agitation and depression.  At other times he would be loud and boisterous and smile from ear to ear.  When he would feel depressed and anxious his face would literally look different.  He frowned, his jaw would seem tight and square, and he would look downward.  It broke our hearts to see him in silent pain.

So right before we found out about his residential placement I decided to act.  I would get an extended appointment where we would evaluate his diagnosis, along with my suspicions, and decide how we could react with his treatment.  Just then his placement came through AND his psychiatrist was leaving the area, so we decided to let the issue rest long enough to get him settled and have his new doctor on board.  The new doctor, we were told by many people, had a gift for helping people like Tyler to live a better quality of life.  I, being more skeptical than most, was not ready to believe it.  Yet the timing was right for a change so why not?

On our first meeting with Dr. V we had very open discussions about what we saw at home for so many years, along with our thoughts and concerns.  She shared her thoughts after having observed him and reading his records.  Her immediate and concrete belief was that Tyler was definitely bipolar. I was thrilled that he would now be treated in a way that would in time relieve some of the extremes he was experiencing.  Dr. V took the time to explain how Ty's current meds could be making some of those symptoms worse and how some other meds may help balance things out.  We now had a plan that in time could change his quality of life.

There are studies suggesting that bipolar and autism often coexist in special needs people.  As with everything involving autism, research is just beginning.

I suppose looking back I do wish that I would have pressed harder about my suspicions.  We had a doctor that Tyler really liked, and so did we, and who helped us get through some extremely difficult times.  That doctor did a lot in helping to stabilize Tyler and he will always be thankful for him.  But with that said, perhaps periodic change is not a bad thing either.  A fresh set of eyes, coming from a different specialty perhaps, could introduce new ideas.

Never be afraid to do your own research and ask questions.  We can't simply just rely on what any doctor tells us because they are seeing a snapshot of your special person, whereas you are seeing the whole picture.  And when the time seems right, get more opinions or new opinions.  Weigh the risk/reward of new treatments.  Continue to press forward for a better quality of life.

Be well and God bless.  Tom

Thursday, August 4, 2016

When Strangers Stare

A friend recently asked me if I had ever experienced someone staring or gawking at Tyler.  The answer is, of course, yes.

There are lots of reasons that people do stare.  Often times we would see children stare when Tyler would be loud or draw some attention to himself.  I've never felt put off by this because kids are just kids.  In fact I want them to be curious about the differences that they see.  I can only hope that the parents are solid enough to explain things to them the right way.

People may stare because they admire that Tyler is enjoying himself in public.  These type of stares usually come with a smile or nod or wink which is a sign of respect.  Or perhaps Tyler reminds them of someone special in their own lives.  Or maybe a person is just trying to figure him out.  All of these reasons have never been a problem for me and I know Tyler doesn't mind.  In fact if Ty is drawing a bit of attention to himself by laughing loud or being vocal I am likely to offer a witty but friendly comment to break the ice with someone else.

For the most I can even deal with people who look away or look somehow disturbed.  I assume that they are just not properly educated about special needs, or that they have some shortcoming in their lives that they can't open their heart to someone as wonderful as Tyler.

On very rare occasions Tyler has had someone be unkind to him in public, usually with an ignorant remark.  Admittedly I wouldn't handle that as gracefully as I should.  I've never physically engaged anyone or anything like that, but I have bowed up and showed my teeth like a bear protecting his cub. My role at times required me to be his protector and even though I probably couldn't fight my way out of a wet bag I would have thrown myself to the hazard to protect him.

But with age comes wisdom and when I look back at even those who would have laughed at him, or stared at him with an unkind eye, or made a comment about him, the only person they hurt was themselves.  They obviously had some very dark parts of their heart.  Their disrespect and disregard only shows their weakness and that they have experienced disregard at some point of their own lives. While I feel for them, I cannot waste positive energy on their negative energy.

By far there are more people in this world that will support you even as a stranger.  This is what we need to remember.  We once had an older couple in a restaurant come up to us and say that even though our son had special needs he was better behaved than most other kid he sees there.  People go out of the way to hold doors, or step aside and allow us to go first in a line, or just say hi and pat me on the shoulder.  Every one of these is a wonderful gift to the soul.  And with each of these gifts, an ugly stare just fades away.

Be well and God bless.  Tom