Friday, March 31, 2017

A Prayer for My Son

Dear God,

I'm thankful to you that Tyler is a happy and healthy young man.  His smile and his demeanor is a blessing to so many people.  You have given him the gift of changing many lives, not the least of which being my own.  He is a gift to everyone around him.

Please forgive me for all of the times that I made mistakes.  I wanted to be a perfect Dad but I am not always able to make perfect decisions.  I come before you as a flawed and repentant individual.

Please protect my boy.  He is a beautiful soul, and he needs someone to watch over him.

Most of all, please prepare a place for us.  Please make him whole again when he reaches your kingdom.  Allow him and I to continue our walk together for all of eternity.  Allow us to walk together and speak to one another as father and son.  Make all of his earthly disabilities disappear so that he may walk free before you.  Let him embrace his mom and sister and welcome them to be with him forever.  Let all of our fears, anxieties, and struggles become something that falls away.  

I ask that you love him and protect him until that glorious day.  



I would like to tell you the tale of two children.  Both have extremely different needs where it comes to the subject of boundaries.

First, there is Tyler.  Tyler's need is to maintain what he feels are his healthy boundaries.  To do this he decides what he is comfortable with, and he reacts according to how the rest of the world adheres to it.  His boundaries are like an invisible force field that protects him. Other boundaries are deeply rooted in his routines each day.  I don't blame him for wanting to do this, because he seems to understand that the world is much more complex than what he is able to process.  He uses these routines to simplify his life, and allow him a sense of predictability and control.  

As his parents, our job is to make sure he learns its ok to push those boundaries.  He needs to be comfortable that just because something is new, it doesn't mean that it is to be feared. It becomes a game of trial and error for the most part.  We had some epic successes with him finding new things he likes (bocce, basketball, ski ball, watching baseball) and we had some epic failures too.  I don't regret those failures and I never will.  Without those failures, we would have never found the successes that we did.  As long as Tyler was safe, and there was no risk of emotionally setting him backward, we felt the reward was worth the risk. Some of those activities are still very much a rewarding part of his life today, even years later.  

Then there is Sam.  Her job as a typical child is to push every button and boundary known to man, and our job is to somehow try to keep some structure around her.  It's literally the polar opposite parental experience.  The perspective I have seen from both sides is extremely interesting.

Us to Tyler:  "Why don't you play with a different toy instead of this one for the last 4 hours?"

Us to Sam:  "How could you possibly have 20 toys scattered on the floor in 2 minutes?!?"

Both instances tell us just how important boundaries are to ALL children.  Whether we are trying to break through them, or build them, as parents we have to realize their incredible importance to the children's development.

Be well and God bless.   Tom

Thursday, March 30, 2017

Public Behavior

Good Evening!

When Tyler becomes highly emotional, whether in a good way or a negative way, his voice volume increases.  Because he does not have a feel for what is appropriate in public, and what is not, it can be an additional element to have to handle while away.

I thought of this subject because one of my previous posts involved Landon and his triumph jumping into the pool last week.  Unfortunately, last night was the polar opposite for him.  He was not going to jump into that pool even if his hair was on fire.  He eventually needed a little help to show he could really do it, and let's just say he was very vocal about the whole thing not going as he had planned.  

I've been there more times than I care to remember.  As the parent in that spot I felt as though the entire place goes silent, and my child is 10 times louder than a sonic boom.  I felt like everyone stopped to look and was gasping in horror!  Maybe that lady over there is calling the cops to report me to CPS!  

After being in that position for many years, my outlook on this has evolved.  First, I realized that what was in my head was much worse than what was actually going on.  People are so involved with their own lives and cell phones that they don't notice things that are important much less what Ty and I are up to.  It's also not as loud and disruptive as it seems. Secondly, many of the people who are watching may be more understanding and sympathetic than you think.  Thirdly, if there are people with a total lack of understanding and consideration, it isn't overly important for them to be in my corner anyway.

With all that said, I do believe that I have a responsibility to the general public too.  What I ask myself is "is Ty's noise/behavior causing a genuine disturbance to other people"?  If the answer is yes, then it is up to me to either resolve his issue or remove him from the situation.  If the answer is no, then I believe he is free to be himself.

In Landon's case, we were in a large pool building with tons of adults and kids moving around and chattering.  In that environment nobody is expecting to have quiet meditation time or anything like that.  So the fact that Landon got very vocal was not (in my opinion) hurting anybody.  Those that did notice appeared to me to be sympathetic to the situation. So in this environment, or a loud pizza place, or an outdoor venue, or a mall, etc. I'm less likely to feel concerned unless things got way out of hand.  If ever we took Tyler to a place where noise could be disruptive, like a quiet restaurant, office, etc. we would be more likely to take measures to maintain peace.

I remember a few years ago there was an issue with an autistic child being very disruptive in a restaurant, and the parents were asked to leave because everyone was being inconvenienced.  The parents at that time took the position that their child was wronged because he has the same right to that restaurant as everyone else.  While I didn't disagree with that sentiment, I think that right stops when it genuinely infringes on someone else's rights to enjoy a meal they paid money for as well.  We have the same responsibility to others as others have to us.  It can't be one-sided.

So, for me, this discussion has everything to do with context.  Landon may have been loud but it didn't cause any loss of enjoyment for anyone.  Tyler liked to be noisy in the mall or in a loud place and we kept it relatively in check.  We generally avoided libraries and extremely quiet public places since those places bored him anyway.  But if we felt we had to, we would remove Tyler so that other's had their right to quiet when it's appropriate.

Landon's and Tyler's vocalizations are their ways to talk to us.  We are blessed to have any means to hear our boys.  So long as it isn't causing a real problem, it's music to my ears.

Be well and God bless.    Tom 

Tuesday, March 28, 2017

Reader Question - The Right Time

Good evening.  Tonight I want to address a question I have gotten a few times from blog readers.  

Q:  How did you know when it was the right time to place Tyler in a residential home?

A:  First of all, I believe "the right time" concept is a bit of a myth.  In our world, the circumstances changed and evolved almost daily.  In fact, trying to choose the right time for anything with Tyler is kind of like shooting darts, while blindfolded, and riding a mechanical bull.  Sure you will hit something, but it probably won't be what you were aiming for.

I do believe the first step for us was knowing that we had reached our ability and emotional ceiling.  That fact in combination with looking at Tyler and sensing that he had also hit a plateau in his growth, made us realize that it was time to start looking at a change.  

This next part is important and I say this with total conviction.....we were also not in control of everything that was about to happen.  We had set some wheels in motion by having our case manager look into different options.  It was like rolling a ball down a hill and watching it take different bounces and turns.  We were also trying to show some faith that Tyler would be ok because there is a plan for him.  With each bounce and turn we reacted accordingly but we kept letting the ball continue on down that hill.  We were committed to letting things take their course.

So to answer the question; we didn't know.  But we read the signs as honestly as we could and started to shift our course.  Once we did that, things began to fall into place. It wasn't a definitive day and time that a decision was made, but rather a progression of events, bounces and curves, that led us to a clearer path.  

My advice is, don't think of a decision like that in an all-or-nothing way, but rather think about where you want to end up and take that first step to start the ball in motion.  If you have faith, and you allow things to take their course, you might well be surprised at how far it takes you.

Be well and God bless.   Tom

Sunday, March 26, 2017

Interesting Day

Good evening and happy Sunday!

One of the blessings of life is that no day is ever the same.  We wake up every day with the opportunity to do great things.  We can choose to change our own lives, or change the lives of someone else.  We have that power, it's whether or not we choose to use it.   It's easy for all of us to forget the extraordinary influence that we have over how events unfold.

We started the day by going to church.  Today we had an especially large and engaged congregation.  The general message is that all of us have "messes" in our lives.  Some of those messes are self-inflicted, while others are thrust upon us.  It was a message that resonated with all of us.  But the great news is that if we have faith, and if we follow that faith and live within that faith, we can have that mess washed away.  Pastor Dave did his usual great job of delivering the message with compassion and humility.  As always, the music was terrific as well.

After the service we got to spend a few minutes with Tyler.  He enjoyed seeing his Mom, sister, and I, along with his Grandma and Grandpa.  We all got hugs and kisses, and he was full of happy vocalizations.  I can't tell you how heartwarming it is to see Tyler each Sunday with such a sunny disposition.  It's our way of reminding him that we are never far away from him, and that we love him every minute of every day.

After church, the 5 of us decided for a late lunch at a chain Italian restaurant.  You know you are in trouble when you are warned as you sit down that the kitchen is slow.  We figured we weren't in a hurry, and we were enjoying each other's company, so a bit of a wait would be no big deal.  An hour later we still didn't have our food.  But we did have a great waitress with a great attitude.  April was honest about what was happening, and was sympathetic to how it was affecting us.  You could tell she was trying to maintain a sense of composure.  I joked with her a little and assured her that we understood.

Finally after about 75 minutes our food arrived.  April let us know that we would be getting some complimentary desserts for our patience.  Robin and her parents enjoyed their meals, while unfortunately you could tell that Sam and I had our dishes rushed, as the pasta noodles were under cooked in some places.  I had to let poor April know that only about half of the pasta was edible.  She gladly took the dishes off of our bill as well.  We told her we felt that this was fine.

She then explained to me that it had been a really rough day.  The worst part for her was that many angry customers take it out on her.  She obviously wanted to do a good job for everyone, she obviously took pride in her job, and there was no good in making her feel bad.  But people did.  She thanked us sincerely for being understanding and having a good time with her.  I could tell it made her feel a little better.  At that moment I appreciated the power of how I could have a positive impact on someone's day.  

We gave her payment for the bill and told her she did a great job.  She returned to the table and said "the Manager zeroed out your bill since you guys were more than patient".  We certainly didn't expect that since some of the meal was just fine.  We thanked April again and made sure she got a nice tip.  I ran into her manager on the way out and praised April for her great service despite the difficult circumstances.

When I reflect on that experience, it really points out to me how important it is that we all treat each other with compassion.  April has ups and downs just like the rest of us.  And when we see that someone is in the middle of a hard situation, we need to go out of our way to ease their burden.  The impact that a stranger can have on another person can be enormous in a good way or a bad way.  I'm going to try to remember every single day that I need to make a positive difference for those I come in contact with.  

We all have incredible power to effect lives, to ease the burden of others, and to show compassion to one another.  Let's never waste the opportunity to use that power!

Be well and God bless.   Tom

Thursday, March 23, 2017

Red Lion Zion Fundraiser

Especially for the members and friends of Red Lion Zion Methodist Church:

Our neighborhood will be having a yard sale on May 5th and 6th.  I will be providing my driveway as a space for the church to raise some money!

If you have any clean and sell-able items that you would like to donate, please place them under the stairwell.  Items such as household goods, clothes, toys, and crafts are especially popular.  Anything that does not sell will be held for the Fall Fling.

Also, if you can help me man the tables either day, please contact me:   or see me before or after the 11:15 service.

I GUARANTEE we will have a bright, beautiful, sunny, warm day!!!!  (Okay...I can't really do that but I do guarantee we will have a great time no matter what).


Behavior Escalation

Good morning!

In my 25 years of being Tyler's dad, I have been far from perfect.  Like nearly all special needs parents, I was not mentally or emotionally prepared for the level of difficulty that Tyler's needs would present.  As with any stressful situation, this kind of adversity will expose your strengths and your weaknesses.

Tyler has challenging behaviors mostly due to his anxiety about things he cannot control. He also has space issues which can cause him to lash out.  It's hard, even as his dad who loves him heart and soul, to not take these behaviors personally.  Its hard to not become angry when he lashes out at his mom, or his sister, or anyone else.  My natural emotions don't always co-exist with his natural emotions because they come from two very different places.  What I feel is unacceptable is something he does out of his own necessity.  

Under most circumstances I could keep his behaviors in some sort of proper perspective.  I could rationalize, and then defuse the situation safely.  But I'm not a robot, no matter how much I wish I could be.  I have bad days just like everyone else.  So there were times that I reacted to his negative behavior with my own negative behavior.  There were times where I would yell instead of talking calmly, or I would sit him in timeout, grabbing him and placing him in his chair with added enthusiasm.  While I would never, ever, ever, physically do harm to Tyler, there were times where I would try to fight his anger with my own anger.

(I take no pride in writing any of this but I feel it is important to talk about even the ugly truths in order to gain understanding)

I have the perfect example of why I learned that going negative versus negative is such a bad idea.  One occasion Tyler had done something I found objectionable and for some reason it made me angry.  I decided to take Tyler by the arm, march him upstairs, and put him in bed for a timeout.  Somewhere between point A and point B he could feel the intensity of how angry I was and he went into a self defense mode.  By the time we reached his bed he had started to scratch and bite me, which he never did before.  Once he decided he needed to top my negative with his negative he put all of his strength toward me. Suddenly I was left trying to fend him off which was extremely difficult.  We finally got him, and I, settled down again and nobody was hurt.

It left me very shaken.  I knew I had contributed to the situation escalating beyond what it should have.  At that moment I vowed that I would never deal with his negative behavior with negative behavior of my own.  My goal needed to be to de-escalate at all costs, for his safety and everyone else's.  After that, we never experienced that level of anger again, and behavior situations were handled much better.

Again, none of us are robots, and we are imperfect emotional creatures.  Even during the best of times we make mistakes, but as special needs parents we deal with stress and exhaustion on top of "normal" challenges.  All of us can approach that tipping point.

This is what I think we must remember no matter what...we have to recognize that behavior escalation is a dangerous thing.  We have to have the self-awareness to know when we are vulnerable to using negative behavior.  And we have to counter aggressive or destructive behavior with cool and controlled behavior.  It sounds easier than it is to do, but if we start to think about this each and every time the negative behaviors begin, we can condition ourselves to think the right way.

Be well and God bless.    Tom

Wednesday, March 22, 2017

Landon the Inspirition

Good evening!

My daughter has swim lessons over the next few weeks.  We thought it would be a great opportunity for her to increase her skills and confidence in the water.  I'm proud to say she is enjoying herself and learning quite a bit.  Its fun to sit and watch her growing up before my very eyes.

Something else caught my eye tonight.  There was a little boy named Landon who was about 40 skinny pounds of dynamite.  There was an energy that was infectious and at the same time a little random.  There were a few things about him that reminded me of a young Tyler, only significantly more under control.  My instincts told me that while he was doing very well, he was operating within the autism spectrum.  

At one point the kids were asked to stand on the side and try doing a cannonball jump into the pool.  My daughter, who does not like going under, held her breath and bit the bullet.  I was so proud of her.  Landon was also hesitating.  We could see that he was trying to work up the courage but no matter how close he got to taking the plunge he couldn't get himself to take the leap.  The instructor calmly reasoned with him.  "You can do this", "look how far you have come already".  My wife and I found ourselves almost willing him to give it a try.

Then it happened.  He jumped.  I tell you I don't know how he even got wet because he leaped back out of the pool with the widest grin you could ever see.  His mom ran over to him and gave him a huge hug.  "I DID IT!!" he screamed, "THIS IS THE GREATEST DAY EVER!!".  He wanted to get back at it and do it again.  

That was the essence of special needs parenting in one magical moment.  Landon had a hurdle in front of him that for most children is a small one, but for him, the process is different.  But with support from his parents, some good compassionate instruction, and a bit of courage, he overcame.  If you have been on the autism spectrum front lines, this is a BIG DEAL.  Every step forward, every little victory, every inch gained is worth its weight in gold.

I also got to meet Landon's special needs companion dog named Apollo.  Apollo provides emotional support to Landon to help him sleep, and to help him calm himself when he gets overstimulated.  Apollo is a beautiful and devoted companion to Landon, which you can see instantly.  They make a great pair.  Both of them are truly inspiring...and we can all use all the inspiration we can get.

Feel free to visit them at their Facebook page.... 4 paws 4 autism

Please like them, share them, and show them some love!

Be well and God Bless.   Tom

Tuesday, March 21, 2017

Silent Running

As families who devote themselves to caring for disabled and special needs loved ones, we need to expand our world as much as possible.  It's critical to see the latest possibilities in medicine, therapy, and services.  It is equally as import to connect with others so that their stories can inspire us.  With today's technology making this easier than ever, we can do all of this with a few simple clicks!

Today I want to highlight a Facebook page called "Silent Running".  It is the story of a family with twin sons with severe autism, who found their passion through running.  As someone who gets winded tying his shoes, I find it inspiring that running became such a wonderful outlet for this family.  It's a truly unique story.  On Facebook you can find them by searching SilentRunningWithAutism

There is a link to their book as well, which I have ordered and will review for everyone at a later date.  I'm very excited to read it...

My utmost respect goes out to Robyn and Allen Schneider for raising two amazing sons in the face of adversity, and their allowing themselves to be open enough to let us all follow along.

Now...if you will excuse me...I have to use the treadmill (to hang my clothes on that is).

Be well and God bless.   Tom

Monday, March 20, 2017

Father Time Part 3

Good Morning.  I hope everyone had a good weekend!

We have all heard the saying "It takes a village to raise a child".  For a special needs child, we need a very compassionate and experienced village.  

As I wrote about in the last blog entry, times have indeed changed.  We have gone from special children being locked away in a corner classroom, to integrating them as much as possible in everyday interactions.  It's surely not perfect but it's moving in the right direction.

There is one surprising reason why we continue to grow into a more inclusive society: our young people.  Yes...those computer obsessed, twittering, tweeting, Facebooking, texting, little people are changing how we look at special needs.  Let me give you a few examples of what Tyler experienced:

Every school day Tyler was given some time in the gym to play some basketball.  He loved shooting hoops and getting some exercise time.  The school also asked for students to volunteer part of their lunch time to come play with him.  It became a popular activity with the kids, and eventually it got hard to fit everyone into the schedule.  Some of the young people let us know in different ways that they were touched by playing with him.  One such young man played on the basketball team.  At the end of his season he presented Tyler with his practice jersey as a gift.  Another peer group spent time in art class putting together a picture collage of Tyler's favorite activities, which has hung in his bedroom ever since.  Still another young man presented Tyler with a basketball picture frame with a personal note in it of how Tyler inspired him and his hopes for the best for him.  Truly amazing stuff from middle school age kids.

One young man was struggling somewhat in school, and he asked to be part of the group. Everyone decided that perhaps it would be good for him to have some contact with Tyler.  In the end, the boy was getting better grades and focusing harder so that he wouldn't let Tyler down.  

These are young people who gave up their own time to reach out to Tyler.  At this normally and naturally self-centered age, these kids put Tyler first.  They showed him incredible compassion by just making him feel "normal".  I believe they, and Tyler, will benefit from these relationships forever.

Tyler had never asked for fancy game systems, or a pony, or even cool clothes.  He has only ever asked to be loved and respected.  To him, a smile and a game of hoops is worth more than any worldly item.  These kids didn't spend a lot of money, but rather they understood that giving their time and attention was the most valuable thing.  They gave a personal jersey, a personalized picture frame, and their art talents to show him how important he is and how proud they were to be with him.  One boy decided to improve himself because he felt he needed to be a better example for Tyler.  

I am hopeful that our young people continue to show us the way.  After all, they will become the future doctors, nurses, therapists, teachers, and senators.  And the more they understand about their special needs peers, the more the world will continue to change.

Be well and God bless.   Tom

Saturday, March 18, 2017


Raise your hand if you have a vice which helps you cope.  Raise them nice and high.

Now, either you have your hand raised, or you are lying through your pearly whites. I have yet to meet the person who doesn't have a coping mechanism.  Just the same, I meet few people who will admit that they have one....or two...or.....

Some vices can be more lethal than others.  But every vice can be very damaging if left unchecked.  There is a very thin line between a vice which is healthy versus one that is not. Consider:

If your vice is to look forward each day to a small glass of wine while meditating in a dark room before bed, that seems reasonably healthy to me.  If your vice is to drink a full bottle while smearing lipstick on your face and listening to baby Rhinos being taken from their mothers, there might be an issue.  It's all relative.

Vices come in so many shapes and forms; shopping, alcohol, drugs, food, tobacco, hoarding, and on and on.  With most of them, moderation is the key.  Too much of anything is a bad thing.

My hand is raised....I have vices.  Alcohol and food are my particular favorites.  Food is the sneakiest one of them all.  Food is something legal that we all HAVE to have every day.  Its not like we are going to get arrested for ordering a Big Mac right?  And somehow it fills this void of anxiety.  It's filling and comforting!  So why not get the milkshake too?  Its something we can do in the privacy of our own home and everyone else can just mind their own business.  Nobody will ever know.  Until we have to lay on our bed to button our jeans and our blood pressure pins the needle.    

I can honestly say I only ever took drugs twice in my entire life.  The last was when I was about 16 and I smoked some marijuana.  We smoked it in the car and then walked through the mall.  I was giggling like a school girl and checking my jeans because it felt like I had peed myself.  That is a true story.  I'm quite sure I accomplished nothing else than looking like a giggling idiot who thought he peed himself.  I never touched the stuff again.  Alcohol is somewhat more friendly in that you seemingly know what you are getting, its legal, and somewhat fashionable to do.  So, when in need of a stress reliever, it's an easy go-to.  That is until you drive, pass out and bump your head, or do something you would rather not remember.  

As caregivers we have unbelievable stress and anxiety.  In fact, many people cannot cope at all with being caregivers.  Its only natural to find a release in order to feel better or at least lessen the weight of the world.  When these vices are done in moderation (except illegal drugs) I believe they have their place.  On a nice day, I like to smoke a dark cigar and sit on the deck.  Once a week I like to sip a bourbon and watch sports.  But when they are taken to an extreme, or when our very mood depends on them, we have to take a step back and get some guidance.

Do you have a vice that might be unhealthy?  Do you lean on something to just make it through each day?  Does something effect your time and energy in a negative way?  If you raise your hand to these questions, please seek some assistance.  The special needs community, and your family, needs you at your best.  The comfort you feel immediately always seems to turn into regret late.  There is NO SHAME in asking for help.

Be well, God bless, and seek help if you need it.   Tom  

Jason's Connection

In my previous entry we talked about the importance of education and awareness.  In our society today it's actually much easier to do.  There are more forums available to even the least technical of us, to reach a large audience.  This very blog, which I was excited to see reach 500 views, has now reached over 36,000 views.  For a schmuck like me that could qualify as a genuine miracle!

I want to introduce you to a Facebook page called Jason's Connection.  This page is a fantastic collection of stories, resources, and support for individuals and families with disabilities.  

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They also have a website which is simply incredible.

I encourage everyone to check out the Facebook page and website.  There are so many interesting things it will keep you clicking for hours!

Please continue to share our pages and links so that we can reach the many people who need help and support.

Be well and God bless.   Tom

Father Time Part 2

Good morning!

I hope everyone is ready for a great weekend.  Sometimes I get multiple subjects swirling around in my head that I want to talk about.  I will have 2 posts for today since something very important has come up.  But first....I would like to continue my series on how time effects so many parts of the special needs family.  Last time we discussed how time impacts the caregiver.  Today, I want to point out something more time has effected us as a society.

I grew up in the 70's.  While this was not exactly "The Dark Ages" for most things, it seems like it was for special needs children and families.  Probably the only thing I had ever heard about was the Special Olympics.  That seemed like the one thing that was specially designed for them.  I remember in my elementary school that there was one room way back in the rear of the school where the "retarded" kids went.  We didn't intermingle with them, and quite frankly, we giggled and made jokes about the kids back there.  I think we lived in a society where things that were different were shied away from.  Things we didn't understand were just considered weird and scary.  If we did see people out in public who we considered to be different, it was acceptable to stare, or even worse, call negative attention to them.  

Times in this regard has changed for the better.  There are now regular stories on the news, or sports programs showing special needs athletes making the final basket of a basketball game.  There are tons of websites, blogs, books, and Facebook pages dedicated to families living life on the spectrum.  There are specific goals for special needs children related to integrating them into peer groups and typical society activities.  There are people, like me, making it a personal mission to educate as many people as possible, and to help those directly and indirectly effected.  

A few years ago, Tyler graduated from high school at the age of 21.  He had legally fulfilled his obligation to officially graduate.  We chose to have him graduate in front of his typical school.  I gave a short speech and then his teacher presented him with his diploma.  It was an extraordinary moment. happened.  All of the kids and faculty gave Tyler a standing ovation.  I think of that moment even today and my hair stands up on end.  There will never be an honor so great as standing on stage with Tyler while people celebrated him for his effort and courage.  We had gone from having kids like him in the back of the school, to standing and cheering their success.  THAT is progress.

Let's be honest, there is so much work to do.  Awareness is only one part of the battle.  We have to have better funding, programs, and facilities.  But let's also not underestimate the power of increased awareness either.  With public awareness the doors open to the other things that we need.  Like any other movement, it takes people simply moving it forward.  If you move it forward one step, and the next person moves it one more, and the next person moves it one more, goals eventually come into view.

While time works against us in so many ways, I'm glad to see compassion and tolerance have become more prevalent as time goes on.  We now see a greater sense of pride when our special children succeed.  Perhaps, if we continue to educate and raise awareness, someday it will turn into so many other things we need.

Be well and God bless.    Tom

Friday, March 17, 2017

The Curse of Father Time Part One

There is a saying in sports that goes something like....the only one that ever goes undefeated is Father Time.  To those with special needs, and the people who care for them, time can be a cruel enemy. 

We had Tyler when I was in my very early 20's.  At that point in your life you believe that you still have about a hundred years to live.  I was reasonably active, fit, healthy, and strong.  I believed that those things would continue to be on my side for as long as I willed it to be so! For quite a while that seemed to work.  But generally being in your 20's and 30's will do that for you.  Then came 40....

I'm not sure exactly what happens when you turn 40, but the body knows when you reach that day.  And if you were being lax about taking care of yourself up until that point, the body REALLY rebels.   

"Remember how you missed those dentist appointments??  How about a ROOT CANAL!"

"You know how you eat to ease your stress??  How about 30 extra pounds!!"

"So you think you can pretend everything is ok??  I call this the PANIC ATTACK!!"

The other undeniable truth is, under most circumstances, your special needs child is likely to outlive you.  Even sooner than that...your special needs child is likely to live beyond your physical capabilities.  We HAVE to face that.  It is an ugly and brutal truth that we have no choice but to acknowledge.  We cannot simply pretend that it is a problem for tomorrow and not for today.

I think about my friend Sue who has a young boy much like Tyler.  I'm sure she and her husband also had the same feelings of wanting to ignore time....until he passed away after a brief illness.  She was then faced with the brutal choices that time forced her to make before she was ready.  You see...time has no respect for our situations.

Do not plan around what will happen when you turn 80 and your child turns 55.  Plan around what will happen when you turn 50 and your child 25.  


A few other points I will hit in this series will be:

  • How time effects Tyler
  • How time effected our decision for residential care for us as caregivers 
Be well and God bless.    Tom

Thursday, March 16, 2017

Welcome All Visitors

Tyler continues to change lives with his story.  He doesn't know how many people he has touched, but his impact has been so profound.  

This blog welcomes everyone.  You might be here because you have a special needs child and it makes you feel less alone in your struggles.  Maybe you are a caregiver for another family member, parent, or friend, and it provides you a safe place to read things you are not yet able to say yourself.  Whatever the reason, you will find that you are a member of a very caring club.  There is no fee to join this just simply need an open mind and heart.

I greatly value every reader.  There is no worry about your politics, your background, your country of origin, or any other of those things that often cause division .  Come as you are.

If you are a new reader or a frequent visitor, there are a few things I want this blog to illustrate:

1.  No matter how isolated you feel.....YOU ARE NOT ALONE
2.  Repeat #1 until you believe it
3.  You cannot take care of your loved one if you don't take care of yourself
4.  Caregiver burnout is real.  Know the risks and symptoms
5.  Own your emotions, express them, share them
6.  Find support through church, family, friends, doctors, etc.
7.  Read #1 again
8.  There is ALWAYS hope for things to improve and change
9.  Make decisions based on research and realism, not emotion alone
10. Believe in your faith, abilities, and instinct.  Be a positive force!

Again, welcome or welcome back.  Join me for my walk with Tyler.

Be well and God bless.   Tom


It's no accident that I put the title word in bold letters.  TRUST

Many of Tyler's successes and setbacks are dependent upon this very word and concept. Trust is probably, for him, the foundation for which all other things are built.

In thinking about how we as "typical" people interact in our world, trust is very important to us.  We have to feel that we can trust those we need to rely on.  We wouldn't go to a doctor if we thought he/she did not have our best interest at heart.  We wouldn't allow our children in a classroom if we didn't trust the teacher.  If we thought our friends would gossip our conversations, they wouldn't be our friends for very long.  We establish if we can trust the people that we encounter, and then we move on from there.  If we feel that the trust level is compromised for any reason, we simply adjust by limiting our involvement, or amount of risk we are willing to put forth.

Tyler has a much more black-and-white requirement for trust.  He doesn't have the ability, as we do, to use his skills to compensate when the need arises.  I believe he senses his own vulnerability.  In order to protect himself, he has to decide quickly whether he can trust someone or not.  When he feels he can trust someone, the sky is the limit.  When he feels he cannot trust someone, it will be very, very difficult to overcome that, and he will likely keep that person out of his space completely.  Its purely a defense mechanism, no more, no less.  

When Tyler encounters someone, you can see him desperately working to pick up on all kinds of queues.  He will watch the expressions on their face, their volume, tone, body language, and demeanor.  He will sense if what he sees is sincere and genuine and he will either see a green light or a red light.  

If you are involved with the care of a special needs person in any way, this is a great thing to keep in mind.  ESTABLISH TRUST.  Show that person that you will earn their trust through sincerity and compassion.  Remember that the more open you allow your emotions to be with them, the easier it will be from them to pick up on the positive queues.  And if you can establish a trust level, you will notice a huge difference in how they will respond to you.

Don't forget that trust is a critical part of our everyday life, and for our special needs friends and family, its no different.  In fact, its everything.

Be well and God bless.   Tom

Monday, March 13, 2017

Chance Meeting

Good Evening!

I have been so fortunate to meet many great people through writing this blog.  A goal for me was to show my readers that they aren't alone in their struggles.  Even I underestimated just how true this would turn out to be.  I'm overwhelmed and humbled to hear the comments and feedback about what is written here.

One such experience came about a week ago.  I've been selling a few things that have just been laying around in the hopes of purchasing a used jukebox for downstairs.  Trust me, when you use online marketplaces to sell items, you meet some interesting characters.  I make sure to tell my wife exactly where I'm going, I meet the buyer in a public place, and I take my watch-pug along with me.  After all, he could chew off someones ankle in about an hour flat.  

One particular transaction, I checked the gentlemen's Facebook page and could tell 2 very important things about him.  First, he has very strong faith (and lives in that faith), and secondly, he has a child who is a miracle to him.  Before we met up, and on a whim, I shared my blog with him.  When we finally met up for our transaction I found out that we had very different situations with our children, and yet we were very much the same.  He had read some of the blog and found a lot he could identify with.

What impressed me so much about "B" was hearing his story about how they faced the pain and struggles of not being able to successfully have a child.  It was a tremendous test of their strength and their faith, and yet they never gave up and they believed in their hearts that they would find an answer.  And their blessing came.  This man's story was a living testimony of being faithful.  

He commented to me that even though we had different struggles, there were also many similarities.  He seemed to find comfort to hear our story as well.  It was an honor and a pleasure to have met him, and we promised to remain in touch.  All of this from a Facebook transaction.

I look at every meeting, every conversation, every day, as an opportunity to teach, to learn, and to share.  I believe that people like "B" cross our paths for a reason.  I'm thankful when I am lucky enough to share stories with another father.  He shows that by living faithfully, and sharing his story, he changes lives.  May he and his family continue to be blessed, and touch others with their experiences.

Be well and God bless.    Tom

Thursday, March 9, 2017

The End of the World

My daughter came home from school today, and she seemed fine.  She had me fooled in fact.  Pretty good for a seven year old.

Then, a little later we found out that something was wrong.  She was in tears in her room and didn't want to talk about it.  It seems she did something wrong in school and didn't want to tell us.  This upset me.....not because she did something wrong....but because she was afraid to talk to us about it.  I try to tell her she can always come to us, but she isn't getting that message.  It's important that she knows that, and falls back on that.  

I asked her to come out of her playroom and sit with me and talk.  By her reluctance I figured she must have stolen a car.  Maybe it was the principal's car.  Maybe she took it and rammed it into a police car.  She came into the room and sat about 10 feet from me.  She didn't want to talk.  She already had the blindfold over her eyes, and cigarette dangling from her lips, awaiting the order from the firing squad.  Apparently whatever it was, it was the end of the world.

I sat her on my lap and assured her that we love her no matter what.  Whatever she did wrong, we would try to understand and help her fix it.  Then she spilled the beans....she had gotten her usual "green" color status (which measures the kids' behavior), moved to yellow. Yellow means you had to be warned to follow the rules.  It was her first move to yellow all year and she was devastated.  She felt her reputation was ruined and she would have to live her life beneath an underpass.  Actually, she had imagined we would be terribly angry and disappointed, and she worried over this the rest of the day.  She was quite relieved to find out that the world wasn't ending, and that we weren't going to make her walk the plank.

After she ran back out to play, happy to be pardoned, I realized that she shares this ugly trait with me.  I can so often make the anxiety leading up to something happening much worse that the happening itself.  Dreading the mighty "what if" monster is usually much scarier than the monster itself.

The advice I gave her is so applicable to our adult lives, and very applicable to special needs parenting.  We have nothing to fear but fear itself.  The sooner we face those fears, and "what ifs", and monsters, and even the firing squad we might be conjuring up, the sooner we can move on and give our brains a break.  We think much better dealing with actual problems then perceived ones.

Be well and God bless.    Tom

Wednesday, March 8, 2017

Our Visit With Tyler

Good evening!

We had dinner with Tyler tonight.  There is nothing like a little Mexican food to fill the belly and soul!  

Our goal tonight was to expand our role without confusing him.  We wanted to try picking him and his staffer up at the house instead of just meeting them at the restaurant.  This would mark the first time since November of 2015 that he would ride in our car.  Perhaps a more nervous thought was this being the first time we would transport him back to his house since the very first day he spent there. There is no way to tell how he will interpret things, or what emotions will hit him.  We kept our fingers crossed and picked them up.

We could tell that Tyler was very happy to see us.  He was smiling, and we each got a nice hug.  He had no problem marching right out to the car and climbing into his normal "shotgun" seat.  As soon as I got in beside him he wanted to do all of his old happy mimicking and happy sounds, just like he did for 25 years before.  

We arrived at the restaurant and the four of us were seated in a booth.  He had a great time throughout the whole meal, giggling, smiling, and enjoying his food.  It was also a great opportunity to spend time with his staffer, who is very kind and loyal to Tyler.  We are so lucky to have so many wonderful staff members caring for him.  

He looks healthy and happy.  He had no problem having his staffer beside him in the booth, cutting his food and helping him with his coat.  In fact, he likes her, and he welcomes her providing for his needs.

I was a little nervous about the ride home.  We loaded up in the car and suddenly Tyler grew quiet and deep in thought.  I feel pretty sure he realized it was time to go "home" and that he wondered exactly what that meant.  We tried to keep him relaxed, and he went back to being chatty once again.  We pulled in to his home, and he hopped right out and accompanied his staff right in.  He headed for a bathroom break, got his Wii controller, and came out to say "goodbye".  He was still smiling, and seemed to be absolutely comfortable with watching us go so he could get back to his routine.  

My biggest reaction is how thrilled I am with how comfortable he is with his life right now. His cheery attitude and good health is undeniable.  I'm also very excited that this means we can now consider taking him out for dinner without staff, and not risk him being upset or confused, especially returning home.  I also get a little sad to say goodbye to him and walk back to our car.  But I know what a blessing his new life is for him, and that he is right where he needs to be.  That means the world to us.

Be well and God bless.    Tom 

Monday, March 6, 2017

A Letter To Tyler

Dear Tyler,

It's been a while since I talked with you at length.  I miss our talks.  I especially miss our walks in the park.  I miss seeing the simple things through your eyes, like the blue sky, birds, and clouds.  You only see the natural beauty in things like that, which I think is a tremendous gift.  So often I am engrossed in my thoughts about worldly things and I miss those simple gifts.  You have never had that problem, you see the picture that is painted in front of you.  No matter how clear and beautiful my walk will ever be, they will not bring me the joy I had spending them with you.

It's been so amazing to see you this happy and healthy.  The smile we see on your face when you enter the church tells me all I need to know.  You feel like you are safe and accepted in the life you are leading.  And I believe you feel the respect that your staff has for you as a person.  You have wonderful people at home, your day program, and church that love you and protect you.  I believe you feel it by the way you respond.

I'm not certain what you think of everything that has happened over the last 18 months.  At this point I'm guessing to you it doesn't much matter.  What you know is that you feel safe, secure, and surrounded by people looking out for you.  

Your sister misses you, and she is so glad to see you each Sunday.  Robin lights up when she knows you are in the room.  When you played with her hair last week it was like you gave her a wonderful gift.  She longed for you to show her that you missed her too.  And of course, I miss you.  You are more than a son, you are like a brother and a best friend.  We are doing ok, and have learned to live in a much different way.  But no matter what we do there will always be a hole that will never be filled again.

Most of all, we are happy you are safe and doing well.  We are willing to assume any role you need us to.  If you are satisfied with seeing us at church and having a dinner out occasionally, that is what we will do.  We will never abandon you.  We are never far from you.  We carry the love of every one of your family and friends along with us.  You may or may not know it, but we are a blanket around you at all times.  Beside all that, we just love you.  And that love is as solid as granite, and as big as this universe.  

We all love you very much and are so proud of you.  For me, you are the best son I could have ever had.

Love always.  Dad

I Had a Dream

It seems that there is finally more attention being called to caregiver fatigue.  I personally believe that it is a very real thing.  As Tyler's Dad there were always two times of stress; the stress of what was happening, and the stress of what I was afraid was going to happen. Even when Tyler was relaxed, I would be thinking of the next time there was a problem. There was always the next trip to dread, the next doctor appointment, or the next health problem.  

I would call caregiver fatigue "waiting-for-the-other-shoe-to-drop-itis".  Trust me, I don't know a single caregiver that WANTS to feel that way...we all understand that it's not healthy, but it becomes a matter of conditioning.  

Have you ever driven all day and then you lay down at night you and feel like you are still moving?  That's how a caregiver feels, like the stress is an ongoing perpetual thing.  It's about being exhausted when you still can't fall asleep.  It's your ears picking up every sound and movement even when everything is still.  

I've not been Tyler's caregiver for the last 16 months.  Fortunately the stress levels have slowly receded, but they are far from gone.  I continue to attend therapy on a regular basis to help me talk about the anxiety and try to make some peace with it.  I don't believe that it will ever completely go away, but my hope is that it will continue to improve as time goes on.

My current battle seems to be with restless sleep and nightmares.  The nightmares focus on the two things that haunted me for the last 25 years.  The first is getting into a situation where Tyler was in trouble and I couldn't save him.  This nightmare strikes at my need to constantly protect him and control the risks around him.  The second thing in these dreams is that Tyler hurts someone or something and I can't stop it.  Again, it hits directly to the heart of my need to create this safety bubble around Tyler.  

Its a sobering fact that I'm still experiencing the anxiety over a year after his move.  That shows how powerful and unrelenting that the stress really is at the time.  I made a terrible mistake underestimating it, and I only hope that by reading this, other caregivers think about what is going on in their own mind and body.  Consider how you are eating, sleeping, and handling stress.  Always be open with your doctor about what is happening.  Consider counseling even if you think you have everything under control.  Confide in others like friends and family and welcome them to be open to tell you if they notice any changes in you.  In other words, put your mental health on the radar, place it on the priority list, and keep it there.

Be well and God bless.    Tom

Sunday, March 5, 2017

My Talk With Tyler

Good Evening!

Hope everyone is having a terrific Sunday.  We had a great time at church today as always. Pastor Dave graced us with his drum skills during the first part of the service, and we got to see our Tyler for a few minutes toward the end.  Now we are planning a dinner with Tyler on Wednesday night where we will have him and his staffer ride along with us to see how Tyler reacts to being transported in our car.  Should be interesting!

One of my favorite things about attending our church is the fellowship among the congregation.  There are always lots of handshakes, hugs, conversation, and humor.  I'm sure if someone were to study the demeanor and body language of the church-goers involved in the interactions, they would find everyone to be very genuine and sincere in their affection of one another.

As I've stated on other occasions, Tyler enjoys his time at church and is generally very friendly and accepting of those around him.  He does not, from what I see, find them to be a threat to his delicate balance.  I feel that this is a very important point to examine.

Tyler depends on his instincts when deciding how he feels about someone.  You can see him examining a person's tone and body language because he doesn't understand all the words.  I would equate this to someone who cannot hear very well, and relies on lip-reading to fill in the gaps of what they aren't picking up on.  He can feel a person's disposition.  It's an amazingly perceptive skill which we noticed early on.

So I would talk to Tyler even when he didn't understand the words I was saying.  I will never know exactly what words bring meaning to him, but I do know he can feel some of what is being said by how it is presented.  It helps him to establish what is safe and what is a potential threat.  I could say "well he doesn't understand what I'm saying anyway" but this just isn't the case.  To him, communication is a broad brush he paints with.  

That is the thing that I want to impress upon all caregivers today.  Even if you don't believe that special person can understand the words, talk to them anyway.  Use a genuine and open demeanor.  Smile and use body language that relays openness.  Never assume that your words are meaningless, because this is likely not true.  And even if it is, they still have a meaning that could be instinctual on another lever.

When we made the decision to be Ty's guardian and declare him incapacitated, I took him on a walk and told him that we were going to do that.  I felt like he deserved that respect as a person to hear what was decided for him.  I told him how very much we loved him and felt it to be our most important mission to make sure we secured his future the best way we possibly could.  

Parents, caregivers, to your special person.  Don't be concerned about what they may or may not understand, because in most cases we will never truly know.  But even when they don't understand the words, they can understand whats in your heart.

Be well and God bless.    Tom

Thursday, March 2, 2017

Crazy Dress

Just a quick post about my crazy girl Samantha and one way she is just like her big brother (and me).  Yesterday was crazy dress day at school.  The sillier the better, so Sam was anxious to look the part.

I'd say she nailed it!  

After school we needed to do a little clothes shopping for Tyler, so we headed to a department store that begins with a "K" and rhymes with "Coals".  Sam wanted to go out with her crazy attire. I didn't mind.  So she strutted around the store completely oblivious to the clerks who were thinking she had wondered in from a homeless shelter.  

Tyler had that same self confidence.  Or in his case it might be more a lack of self awareness.  Either way, he is true to himself and really doesn't have much regard for the opinion of the general population.

Through my experiences with Tyler I have to say I've become very much that way also.  As long as I'm not disrupting anyone I'm perfectly fine just being myself.  I like that the kids think that way as well.

There was a clerk that raised her eyebrow and shook her head as she looked away.  Never one to turn down such an opportunity I took Sam closer and said "She did pretty well for being color blind didn't she?"


It took me back to the days of Tyler walking through the mall with me, just chattering in his happy loud tone.  Most people would smile, or even make a comment about how happy he sounded.  And of course their were those few who were inconvenienced by his jolly demeanor.  He never concerned himself with that, he was just happy being Tyler.

Be happy with who you are.  Let your special person be happy with who they are.  As long as it's not truly disrupting anyone, being happy is what counts.  Even sneak in a little CRAZY now and again!

Be well and God bless.   Tom

Fighting Disappointment

I planted a little money tree in my yard.  I watered it and imagined the awesome things that would come with it.  Maybe I could buy a fancy car! would solve all my problems.

As luck would have it, it was actually a lemon tree.  This wasn't what I wanted!  I thought about chopping it down and shaking my fist at the sky at my terrible luck. Then I realized, we could give lemons to the neighbors to help make them healthier.  We could start a lemonade stand and teach Samantha how to run a little business.  Perhaps lemons aren't so bad after all.

This is obviously a metaphor about how it seems my best laid plans can so often turn to dust.  Today was no different.  Our plan today was to have Tyler and a staff member meet us for some Mexican food.  We looked forward to spending some time with Tyler after a successful few minutes with him on Sunday.  

About lunch time I got the text....staff is short due to the illnesses going around.  We would be better to postpone until next week.  I considered that we can always just go pick him up from the house and take him ourselves.  As soon as I thought about that, I also thought that he hasn't been transported by us in nearly 18 months.  Would he find that to be confusing? I also considered that we would be dropping him back off to his house for the first time. Could that bring anxiety from his first night rushing back to him all over again?  Someone took lemons off my tree and threw them at my head.

The story could end there, and I could go outside and kick at the dirt.  But today's experience showed me that we have an area of opportunity to improve.  If we work with Tyler gradually over the next few visits, perhaps we can introduce him to riding with staff in our car, and hopefully work him up to short trips without staff at all.  Jumping in with both feet is too risky for now, but what we can do is find a way to put ourselves in a better position for down the road.

Its the essence of special needs caregiving.  We feel like there are forces just waiting for us to make a plan so they can bugger it all up.  The only way I can defeat that is to identify what part of the plan we can change to prevent it from happening in the future.  What can I do differently to increase our odds of success.  In this case if we can get Tyler comfortable with us taking him out and bringing him back without staff, we can increase our visits .

Living life today can be hard.  Being a parent today can be a roller coaster.  Being a special needs parent or caregiver today can be brutal.  As impossible at it may seem sometimes, and regardless of how often we are ducking those lemons, we have to open our minds and use our imaginations to turn them into lemonade.  There is a saying that goes "success is the best revenge".  Turn back your disappointments and setbacks by turning them into successes.

Be well and God bless.   Tom

Wednesday, March 1, 2017

Old School Pics

Good Evening!

Looks like we are going to get to see our little man tomorrow night at dinner.  Should be love, laughs, and chips and salsa!

I wanted to shift gears tonight and just put up a few old school Tyler pictures from 25 years ago....

 From the very beginning, Tyler was always eager to laugh and smile.  It's always been one of his most wonderful qualities.
 Tyler and I were always most comfortable watching after each other.  He is the greatest best friend I could have ever hoped for.

 This must have been during my Sopranos stage. 

I guess is Tyler being "Louie the Lip"!      

Hope you enjoyed a little walk down memory lane!   Be well and God bless.....Tom