Tuesday, January 31, 2017

Boy Interrupted

As I stated previously, I like to pass along documentaries and movies that strike a particular cord with me where it pertains to mental health and caregivers.  Last night I came across a documentary called "Boy Interrupted".  It deals with a young boy with Bipolar Disorder. Even perhaps more so, it deals with the caregivers and friends who were loving and supportive in every way they knew how.

The documentary shows us that mental illness is a battle.  A battle that really isn't measured in wins and losses, but in steps forward and backward.  It also shows us that mental illness does not discriminate.  This family is affluent and structured.  We watch as they do everything that they feel they can do along the journey.

The story does not have a storybook ending.  As sad as this is, it helps us to understand the importance of continued treatment.  I refer to treatment as a "moving target" and it is nearly impossible to always know the right thing to do.  Just like a normal body, the body of someone with special needs changes.  They can also develop tolerances to drugs, or different reactions to drugs.  Drug interactions can be tricky when treating multiple issues. The individual can feel "better" and discontinue their drugs, or become so tired of side effects that it outweighs the actually sickness.  

Overall, I consider it one of the best documentaries I've seen yet.  It is definitely difficult to watch at times because it deals with itself head-on.  I believe the family's purpose here is to shed light on a very hard subject.  They show us the tug-of-war between unconditional love and Bi-polar disorder.  We see the many levels of struggle from the boy, friends, therapists, and family.

One of the most compelling things that I will share with you is that when this young man went through the depressed stages of his Bipolar, the family described that his face changed.  His face literally sagged and drooped with a lack of life in it.  When Tyler goes through his difficult times he also looks different.  His jaw becomes rigid and tense and you can see anxiety in his eyes.

Stories like these can be hard to watch in some respects.  However, it's important that we try to gain some perspective from other people's experiences.  Reality is the greatest teacher and for some things it's the only teacher.  

Be well and God bless.   Tom

Monday, January 30, 2017

Ty's Bad Day

I get weekly updates about how Tyler is doing in his various activities.  I've grown very accustomed to hearing that everything is great, and that's about it.

This week Tyler had a very bad day.  It seems he was not comfortable with a fill-in staffer and got quite hostile about it.  For whatever reason they had a long night without Tyler sleeping, and they had some damage around the house.  It had to be one of the roughest times for him since moving in over a year ago.  Fortunately he settled down the remainder of the week with his normal, trusted staff.

Emotionally, I never stop being a caregiver.  Even with him living in another home and having a dedicated staff I still feel that emotional thread that ties us together.  I know its inevitable that he will have bad times and struggles, but I'm not able to prepare myself for them emotionally.  The instincts of rescuing and protecting him and everyone else comes back abruptly and strong.  I feel powerless to not be there to calm him and comfort him.

Tyler's bad days have a real effect on my psyche, and I'm certain I am not alone among caregivers in this struggle.  My therapist has drawn comparisons to a PTSD type of response to having had experienced so much stress and fear with Tyler's care for such a long period of time.  I have battled through extreme anxiety, sleep problems, and heightened anxiety in situations where we would have had difficulty (even though he is not physically with me during those periods).  Its odd to me that my emotional state is much more fragile AFTER he moved away than BEFORE.  Perhaps at the time I was so engrossed in making it through every minute, every hour, every day, that I never stopped to feel those things.  I learned to block them out for the sake of keeping the train on the rails.  My own issues would be for "later".  

Thankfully things sound much back to "normal" for Tyler.  He had a dentist appointment today which he did very well for also.  I'm so happy about that.  Now I just have to deal with my own "later".


To close my eyes
I cease to feel
And tell myself
Forget what's real

Ignore the fears
Suppress the mess
Create a truth
Without the stress 

Eyes stay open
Mind still races
Thinks of dangers
Risky places

Have to manage
Push for greater
My own struggle
Waits for later

Later is safe
Kept far away
Later pretends
Won't see the day

But later waits
And grows older
Revenge it seeks
Hand is colder

When later's now
It hits you hard
Down to your knees
Until you're scarred

Take this advice
And feel your pain
Don't put it off
To feel again

Be well and God bless.   Tom

Sunday, January 29, 2017

Happy Birthday Zach!

A few weeks ago I posted the story of Zach who was about to have a birthday and felt like nobody was going to care much about it.

The local newspaper ran a story, and we ran the story on the blog.  The response was overwhelming.  Zach has been invited to some awesome events and had some very cool parties.  

Today he is about to see that he received nearly 3,000 cards and gifts from all over the world.  Thank you to each and every one of you who responded in one way or another.  It shows that maybe one action cannot save the world but it can certain change the world for one little guy with autism.

Today Zach's mom said something that has been so fitting to many of the things I have been blogging about.  She said "we are people too who would love to be included".  It's all she wants for herself and her son, to feel as though they are a valuable part of this world.  All of the cards and gifts should be proof that they certainly are.

Zach's birthday will come to a close soon and hopefully he will always carry this special experience in his heart.  For the rest of us we need to apply this experience to how we treat so many others around us.  It doesn't have to be a card or a gift to uplift a person who is in need.  The power in a kind word, a smile, or a hug can change someone's entire outlook.  

One last thought; kudos to Zach's mom for reaching out for her son.  She put her pride to the side and was willing to put herself and her son out there and ask for some kindness and compassion.  And look at the results!  

What an uplifting story!  Have a wonderful Sunday.   Tom

Saturday, January 28, 2017


Good evening.

My friend Doobie told me that I needed to watch the movie/documentary called "Gleason". It is the story of Steve Gleason, who played football for New Orleans.  After he retired he was diagnosed with ALS, or Lou Gehrig's Disease.  As if this were not heartbreaking enough, his wife found out she was pregnant mere weeks later.

ALS is an awful disease.  It begins robbing you of your motor functions and doesn't stop until it takes away your ability to do everything but think.  It leaves your brain intact while it takes away every other function.  You are fully aware that your body is slowly losing control of itself.  Within a relatively short period of time you become completely dependent on those around you.  

When you watch it, be prepared for its honesty and raw emotion.  Much of it is taken directly from self-filmed footage taken during the events of the first 4 years after his diagnosis.  It sees the disease through the eyes of the afflicted, the caregivers, the family, and even his young son.  We are in the room for the tremendous struggles and heartbreak.  And we also smile as they smile, and feel triumph in their accomplishments.

I don't want to give away anything in the movie, but I will say that it runs all of us through nearly every emotional subject you can think of: love, devotion, frustration, hope, faith, and everything in between.

When I come across movies that I feel caregivers can relate to, or can use to find some lessons for their own situation, I try to pass that along.  This is, to date, the best movie I have seen which shows the complexity of the cared-caregiver relationships.  Instead of offering any answers, it succeeds in asking all the right questions. 

The answer is......that there is no answer.  Every step we take is a personal journey full of joy and loss.  The best we can do is find grace during the good days and the bad.

Be well and God bless.    Tom 

Thursday, January 26, 2017

Good Company

Most everyone has experienced it in their lives...you encounter someone with a disability or abnormality and you find yourself feeling uncomfortable.  You have no intent to be rude or disrespectful but you simply freeze up.  As humans we are imperfect creatures even when we have good intentions.

My coworker, I will call him "Doobie" is someone I look forward to visiting with.  He is an extremely smart guy who knows a lot about our business.  He has a sharp-tongued wit that's as quick as a whip.  But another thing I really like about Doobie is his unflinching honesty about his spinal cord injury.  He holds his head high every day and treats his disability as a fact of his life that does not define who he is.  And he is so right....it is not who he is.  Spend two minutes with him and his attitude is all you see, everything else fades to the background.

For dinner tonight I went to the home of an old friend and his wife and children.  Being with all of them is a blessing while on the road.  His children are beautiful and his wife is a treat to sit and talk to.  She loves to look at family pictures, talk about the latest events, and exchange stories.  One other reason I respect her tremendously is she doesn't let being deaf ruin a fun conversation.  She is a devoted wife and mother and a terrific friend to hang out with.  I could only hope to someday have her strength and courage.

After dinner on the way back to the hotel I thought of my friends, and I thought of Tyler.  Tyler loves people who like him for who he is.  He wants nothing more or less than the same respect and courtesy afforded to any person.  He doesn't want people to shy away, or to pity him.  He wants people to laugh with him, talk to him, and engage him.

My life would be significantly less rich without Doobie, and Bethany, and Tyler.  They have so much joy to offer and there is so much I continue to learn from them.  They are unique in a world where unique is in short supply.  All they ask in return is to be afforded the same personal engagement as everyone else.

If you ever feel that uncomfortable feeling again, smile, look that person right in the eye, and ask them how their day is going.  The conversation will carve its own path and before you know it everything else will fade away.  Don't be afraid you will accidentally say something wrong, or look at the wrong thing, or not understand on the first try.  These fears are designed to keep good people away from each other.  Instead, let their grace surround you and teach you.

Be well and God bless.   Tom

Monday, January 23, 2017

Tyler Update

Good Afternoon!

It has been a while since I updated everyone on how Mr. Tyler is doing.  

Winter is a fickle thing for Tyler.  I don't think he is a huge fan of it.  But I also think there are some things that go on inside his brain when winter arrives.  Its hard to be sure if it's a chemical change due to a lack of natural light, or some other unknown internal clock issue.  Whatever it is, it can make him more quick tempered.  It also seems to make him a little down and depressed at times.

So here we are in the middle of January.  Somewhat lucky because we haven't had the snow and ice to navigate thus far.  There has also been a lack of bitter cold which also helps Tyler.  But it does seem like there has been some crabby behavior lately, although nothing major.

There have also been some staff changes which never helps matters.  All caregivers hate when those two words are put together:  staff changes.  Each new staffer will need to build a trust level between them and Tyler, which is not easy.  There are times where Ty just flat out refuses to get along with somebody, whether or not the reason makes sense to anyone is highly debatable.  I don't blame the agency on this, its simply the nature of this environment (I sure wish it wasn't).

The good news is, overall his health has been very good and he has generally remained a happy guy. The house still has plenty of awesome staff that know him very well.  Each week I still get pictures of Tyler chomping on chips and salsa at his favorite Mexican restaurant, so things can't be all bad.

His life is very different in so many ways than mine, but some things are very similar as well.  There will be times when he has everything right where he wants it, and other times that he just has to wait until that old second wind comes along.

Be well and God bless.   Tom

Sunday, January 22, 2017

Its a Beautiful Day

It has been foggy all day today.  It's wet and cold.  I have to go on a business trip tomorrow which means I will be missing my family, my dogs, and my bed all week.  My Dallas Cowboys are out of the playoffs.  Tyler had a week with some aggression.  The political climate is stressful and ugly.

Wait......so HOW is this a beautiful day????  Have I gone mad???

I am alive.  The weather has an almost spring-like feel to it.  The city I'm going to will be fairly warm and sunny, and the money I am paid puts food on the table.  The Cowboys had a good season and the future of the team is bright.  Tyler is safe and with people who will help him and love him no matter what.  I live in a country where I am free to write this blog.

Its all about perspective you see.  And as a very smart spiritual leader said to us today, you have to see the dark in order to appreciate the light.

Negative experiences have an extremely important place in our lives.  They are teaching tools.  They make us appreciate the good experiences.  They are still steps in our journey which leads to bigger rewards.  Missteps are still steps.  

Our attitude is what determines a bad day or a good day.  WE control it!  I think so many of us forget that so easily (me included).  

Be the light for someone else.  A call from you, a visit from you, a hug, a kind gesture, could be the spark that the other person needs.  Show your faith through the example that you set.  Decide now that EVERY DAY WILL BE A BEAUTIFUL DAY because you have been given the opportunity to walk this journey.  Don't ever waste it.

Be well and God bless.    Tom

The United Front

We have a "typical" daughter.  That is to say she is bullheaded, willful, and maddening!  She is also kind, artistic, and beautiful.  How she gets all of this into 4 feet of girl body I'll never figure out.  Right now, at age 7, she is fairly certain that the world is round and it evolves around her wherever she goes.  When she wants something she isn't beyond trying the old method of "divide and conquer".  Unless we provide a united front we have no chance!

Presenting a united front is an extremely important element in managing a special needs situation.  Everyone has to be on the same page.  Notice I didn't say everyone has to agree with each other.  You don't have to reach 100% agreement to be effective.  In fact, having two separate points of view is a GREAT thing so long as you can reach a compromise on a solution.

Here are some tips I would recommend based on my experience:

1.  Establish WHO is the ultimate keeper(s) of the gate.  Outside opinion is extremely helpful and I believe the more trusted opinions you get, the better.  But there has to be clearly identified captains.  Robin and I had no problem listening to doctors and taking advice from friends and family, but we knew that ultimately we had to decide what was best for Tyler and the family unit.  We had built relationships where this was respected which just made everything more effective.  If you have someone who is not willing to respect that boundary you have to make this clear.

2.  The captains must be able to work together.  Compromise is SO important.  There cannot be concern about who is right and who is wrong.  Every effort needs to be made to find a cohesive solution.  There is no place for EGO here.

3.  Decide beforehand what the solution is going to be and then apply that solution.  When it appears there is agreement beforehand, it portrays more strength

4.  Do not undermine the team or allow the team to be undermined.  When you make a decision together, carry it out together

5.  Whether the course of action works out perfectly, or crashes and burns, do not worry about assigning blame, or claiming credit.  Win as a team, lose as a team, learn as a team. 

6.  Finally, support the team with everything you have.  Commit fully to being the best captain you can be.  Try your best to leave selfish emotions on the shelf

The core of having special needs is that the person needs someone to make decisions for them that they cannot make for themselves.  Its a tremendous responsibility that must be done with honesty, integrity, and selflessness.  

Stand together and stand strong.   Tom

Saturday, January 21, 2017

Aggression 4

A very nice lady asked me yesterday if I had any advice for parents that have a younger child that seemly is becoming more aggressive.  It seemed ironic since this week my blog entries have centered on this very subject.  In my experience here are a few things that come to mind:

1.  Do NOT feel ashamed.  Don't try to hide it from everyone else

2.  Do NOT blame yourself.  You are not a bad person or a bad parent.  You are not being "punished"

3.  Sound the alarm to your doctors.  This may be an issue that can be dealt with through medication, therapy, or other methods.  Unless you impress upon them that something is happening, the proper help will not come

4.  Find out what resources are available.  When the aggression escalates you have to realize you are in over your head.  The sooner you have help on board the better
5.  Do NOT wait.  These issues rarely get better on their own and can rarely be "fixed" without professional intervention

6.  Keep your emotions in check.  Its very hard but you must remain stable.  Don't escalate the issue by trying to go "toe to toe" with the aggression.  Nothing good comes out of escalation

7.  Have safe ways of de-escalation.  There are techniques that can bring the temperature down on a situation.  Therapists can help with this

8.  Safety first.  Try very hard to ensure all parties are in the safest circumstances possible

9.  Do NOT take it personally (easier said then done but try).  When love doesn't work love them even more

10.  Lastly, do NOT try to apply rational wisdom to irrational situations.  You have to think outside the box.  Think about what the child is seeing, hearing, and feeling to find the possible triggers

Nobody will laugh....you won't be judged.....you should not be ashamed.  If anyone does this they are not part of your team anyway.  

Be well and God bless.    Tom  

Friday, January 20, 2017

Aggression Part 3

In the previous entries we talked about the background of Ty's aggression as well as the affect those behaviors had on all of us.  In this entry I would like to talk about some of the things we did right, and some of the things we did wrong during all of these years.

Granted, its easy to use those words now "right" and "wrong".  At the time we were simply trying to survive the day with nobody getting hurt.  Much of that involved carefully crafting the world around him to avoid his triggers.  This could get to be a very exhausting effort.  In our defense, I think we were always trying to make decisions through his point of view. Regardless of the situation we would say "how will Tyler do with this".  Whether planning a vacation, buying a house, or moving a piece of furniture, it was priority number one.

I ask myself now....was that actually the right thing to do?  Sure it made things "easier" for Tyler which in fact made things more comfortable for us, but did it also allow him to become too much of a creature of habit.  Did he come to expect that he could rely on his comforts and not have to develop ways to manage his anxiety about new things?  In retrospect I believe we should have been pushing his boundaries more.

We can think back to his school days.  There was often discussion as to whether Tyler should remain with his classroom and his teacher (Miss Sue) year after year, or if he should be moved into different classrooms in order to broaden his experiences in school.  We knew we had a wonderful, protective, and loving teacher already so there was no way we would give her up.  Tyler respected her and loved her like another parent.  So in that respect there was no question that he was safe and loved.  The counter argument had its merit as well. Perhaps he was not allowed to get used to being handled by other teachers so long as we kept him in that class.  On this one I think I would do it the same way all over again.  His school years are good memories for him and for us and many special needs kids unfortunately can't say the same thing.

But we did make mistakes for sure.  I was guilty of allowing Tyler to see me as his primary caregiver and not allowing Robin to do the same.  Whenever there was conflict I whisked him away and calmed him down.  In my frustration I would critique Robin on how she could have avoided the situation.  Even though I was trying to make things better I was doing the opposite.  I made Robin feel incompetent and I didn't empower her.  I also made Tyler feel like I was the only one who could make things better for him.  My intentions were right but I was hurting everyone.

I think Robin would agree that in the early years she would have wanted to be more assertive with him.  She often got her feeling hurt by his behavior (which who could blame her) and allowed that to show to him.  This actually affirmed to him that she was a viable target of aggression.  Trying not to take things personally was an extremely difficult thing for her to do.  To her credit, she did work harder on this toward his later years with us, and their relationship had improved significantly in that regard.

I do think back on these things.  But I remind myself that when you are in the "thick of the battle" you are only able to get through that minute, that hour, that day.  There is no perfect solution to any of the issues above.  Emotions get in the way, life gets in the way.  If you feel as though you are doing the best you can, that is all you can ask of yourself.

I will wrap up this subject in the next post with just a summary and some additional thoughts.

Be well and God Bless.   Tom

Wednesday, January 18, 2017

Aggression Part 2

In my last entry I explained how Tyler's aggression generally works.  Today's entry will deal with the ramifications all of us experienced and continue to experience.

First I want to add a disclaimer.  We have never believed that Tyler wants to hurt anyone, especially us.  His aggression, we believe, has been rooted in his inability to communicate and process how he feels.  It has never caused us to admire him or love him any less.

With that said, there are very few things more emotionally devastating than having your loved one become physical or verbally violent against you.  Knowing that the one you are caring for is not able to comprehend the effects of their actions is of little solace.  Its something that we can rationalize all we want, but feeling it is an entirely different matter.

In our house, my wife was the primary recipient of Tyler's aggression for years.  I look back and I feel just terrible about that.  She dreaded my business trips because she knew it could turn into a very bad time.  I was helpless because I had to earn a living so I felt like I had little choice in the matter.  My work days were spent holding my breath and looking at my watch....finally able to breathe when I knew Tyler was likely in bed for the night.  I dreaded calling home for fear of hearing the bad news about what I was missing.  I felt guilty about not being there to help, and in fact likely causing more aggression with my absence.  I felt inadequate as a provider and a protector.  I was frustrated that as bad as it was to be on the road, it was worse to have to always hear about the problems at home.  It made me feel alone and defeated.  There were times I felt like quitting, and almost did.

It was 10 times worse for Robin.  She had to endure the anxiety of knowing I would always have another trip coming up.  Even when I didn't travel, Tyler would find reasons to sneak in a kick to the shin or a punch to the arm.  She never asked for or deserved a single one of these actions.  There were times that the bruises on her forearms (and she does naturally bruise easily) made strangers wonder if she was being beaten at home.  She had to take our daughter to a relative's or friend's house each night when I traveled because it wasn't safe for Sam to be with them without me there.  She had to be on edge in a much different way.

Sam was also effected by the aggression.  It still is hard for her to understand why we had to protect her from her own brother.  She beams from ear to ear when she sees him but the feeling is not mutual.  When Tyler would head in her direction she had to duck out of sight so he wouldn't get angry.  It put extra stress on her and it took her a few months after he moved away to realize she was free to move about without worry.

Tyler suffered too.  You could see that he very much disliked feeling that way.  He hangs his head when he strikes out at someone or something.  He loves to smile and be happy, but when he would be in a darker place you could read it all over his face.  He wasn't happy, which made him aggressive, which made him unhappy, and so on.  

The aggression was a battle we were all losing and we were all at serious risk in different ways.  All of us were battling forms of depression and/or anxiety that was doing nothing but fueling the fire.  I would look at Tyler and silently plead with him that if he could just learn to live happily without the violence we would all stay together for many years.  To me it felt like a "simple" thought and yet knowing that its far more complex.  There was no pill to fix it, no magic words, no secret technique.  As the years continued we felt as though our little boy who loved to give massive hugs had slipped further away.

Aggression, whether by a child on the spectrum, or a parent with dementia, is frightening, isolating, and dangerous.  Not only can the aggressor do damage to property or other people, but it lands them at risk for being abused by others in retaliation.  This aspect must be handled with the help of professionals.  You cannot retreat and suffer in silence due to feeling guilty or ashamed.  There are medications, therapies, etc. that can help in the short term, and help open possibilities for the long term.  If you are experiencing this situation you need to reach out and seek help for yourself and your loved one.  Neither of you will survive the long term unless the situation is addressed.  

In the next entry I will address the things we did right, and what we did wrong, in how we dealt with our own circumstances.

Be well and God bless.   Tom

Tuesday, January 17, 2017

Aggression Part 1

My last entry touched a little on aggression and the effects it has on the entire family.  Its hard to imagine anything more difficult to cope with than the physical and emotional pain of a loved one striking out at those that devote themselves to them.  This will be a series of entries devoted to this subject.  This entry will give some general background on our struggle with Tyler's aggressive behaviors.

Tyler's aggression began to show itself around the age of 3.  He could be self-injurious by banging his head when he would get upset or frustrated.  He would also swing his arms or kick his feet when he would want to communicate his displeasure with something.  In some respects it was a very impulsive behavior driven by his lack of verbal skills and ability to process his emotions.  In other respects there was calculation in how he chose to carry out his aggression.  There were triggers that you could predict from a mile away, and yet there was unpredictability of aggression that happened with little warning.  The predictable triggers could be; cutting food in front of him, walking away from him unexpectedly, waiting in a line, the dogs eating where he could see them, and picking something up from the floor in front of him.  But many other triggers gave us no warning at all.

Tyler also chose where his aggression would be targeted.  He preferred to be aggressive toward people with quieter personalities.  Anyone who showed apprehension would be particularly in danger.  Children and pets would also be easy targets for him.  This always made me nervous when there were little ones or elderly people in his path.  Conversely, people with "type A" personalities, or people that showed him that they were not impressed by his aggression were rarely the recipients of it.  If you appeared to be animated, fearless, and bold, Tyler would be drawn to you and aggression would be non-existent.

As Tyler got older the aggression became more difficult to handle.  Much of that is a simple result of his increase in size and strength.  He also became more unpredictable the older he got.  His mood swings also seemed to influence him in a much more profound way as he went through his teen years.

Fortunately now that he is comfortable in his residential surroundings the aggression has been quite manageable.  The unpredictability is still there, and incidents can happen, but overall he has been doing well.  The staff still has to know his current triggers.

In the next entry I will address the emotional effects it had on us as individuals and as a family.

Be well and God bless.    Tom

Monday, January 16, 2017

Tyler Ups and Downs

When you are the caregiver of a special needs person there is an undeniable truth that will continually come to the forefront....there are going to be ups and downs.  

Yesterday we were attending church when Tyler and his staffer arrived and took their usual place toward the back of the sanctuary.  He appeared to be in a good mood as he was smiling and acknowledging others.  Robin, Sam, and I remained toward the front of the room so as to not distract him during the service.  As usual the service was filled with friendly fellowship, a thoughtful message, and music coming from the heart.  It is a congregation that embraces the loud chatters of its special needs participants.  It also welcomes good humor, tears, and hugs.  

At the conclusion of the service I'm sure Tyler was eager to duck out the side door as he usually does.  After all, an hour for him, doing anything, is his limit.  Instead, his staffer moved him toward us.  I suppose being excited to see him I rushed up on him a bit quickly and gave him a hug, which seemed to surprise him a little.  The combination of being surprised and being pulled in a direction opposite of the door wasn't sitting well with him and we decided to just allow him to go on his way.

I watched him as he walked out the door with his staffer.  He was once again happy to be on his way, heading back to his routine.  At that very moment he needed what is now familiar to him.  This time it was me who invaded his space.  On this occasion we just needed to say goodbye and let him do his thing.  It wasn't the reality I wanted to confront in that moment but he needs his security and routine far more than he needs any single person...even me.

It seems to be a universal thing with special needs, you never quite know what you will get on any given day or any given situation.  No matter how much I know this to be true, I couldn't help but respond to the way I was feeling at the time.  It was disappointing to have it turn out differently than I was hoping for, but I do understand.  It has to be about what Tyler needs in order to be happy and comfortable.  That certainly doesn't mean I don't feel the sting of what that reality means, its just how I choose to deal with it.

I'm sure there are readers that have a parent with dementia who are coping with those bad days where they don't recognize who they are.  And others who have special needs children that struggle with days of aggressive and disrespectful behavior.  We don't ever get used to that pain so we have to find ways of rationalizing it.  It leaves us hurt and asking questions that likely have no answers.  What could possibly feel worse than someone you have loved and have known for so long not knowing who you are or wanting you to be there?

What I find to be the key thing to do is to manage your expectations when you can. Understand the situation and consider the best case and the worst case scenario.  Enter the situation in a fairly neutral state of mind and then gauge how the situation is playing out.  If its one of the good days you can increase the interaction.  If its one of the bad days, you can consider have shorter and less intensive interaction.  Applying this approach can save stress for the other person, and manage the stress for the caregiver involved.

One last point, this is where support groups, therapy, church, family, and friends are SO important.  The emotions to this level of care are more than most people can handle without means of support.  While it may feel like you are "handling it" at the time, the lasting effects are accumulating and festering deep inside, and they will find a way to cause havoc somewhere down the road. 

 Be well and God bless.    Tom

Thursday, January 12, 2017


Good Afternoon!!

I need your help.  More than that....a special family needs your help.  

There is a boy here in my hometown that is about to turn 13 named Zachary Foller.  Zach has been recently diagnosed as autistic.  This young man has the idea that most people don't care about his birthday.  We know better don't we?!?

I want to help get Zachary a full mailbox for his birthday.  He needs the simple gift of people from all over the country and all over the world sending him love.  A postcard or a birthday card....store bought or homemade.  Just imagine if he gets cards from different states and different countries!  He loves things having to do with the weather so use that idea!

PLEASE.....you can provide an amazing gift to this young man.  This is how we change the world.....one kind selfless act at a time.  NO child, special needs or not, should ever feel as though people don't care about his birthday. 

And a special shout out to his Mom for doing whatever she has to do to make her son's life special.  You are what this blog is all about!

If you want to read the local article the link is:


Send your birthday wishes to: 

Zachary Foller
4550 Bull Road  Lot 21
Dover, Pa.  17315

What We Remember

I recently read about the death of an old friend of mine named Wayne from my bowling days.  Wayne was significantly older than me, but our personalities seemed quite compatible.  I even remember attending an Orioles game with him a long time ago.  What I remember most about Wayne was that he was just easy for me to get along with.  He always seemed to be in a good humor, always complimentary of his teammates and opponents alike.  I'm certain that he was many things to many people and had many facets to his life, but the one thing that stands out for me is how he treated the people around him.

Months ago I had written a post about an even closer friend that I had lost named Ronnie. Ronnie and I bowled together for so many years, went to baseball games, and NASCAR events.  While I remember those experiences very fondly, it isn't the first thing that comes to mind about our friendship.  What I remember first is how he laughed so easily at things.  I also remember how we could have serious conversations just as fast as we could have silly ones.  I remember how he loved to hear Tyler imitate professional wrestlers and he would laugh his hearty laugh.  After all these years I can still see that like Ronnie was standing here now.

One of the people closest to me as I grew up was my "Pop", who was my Mother's Dad. Pop was a man who's body was older than his years.  By the time I was old enough to begin to understand the world he was already limited by his health.  What Pop and I did do a lot of was walking.  This seems ironic now since this was what Tyler and I did together for so many years as well.  In the grand scheme of things I wasn't around for the majority of his life.  But what I remember is how he spent so much time with me.  He took the time to teach me things, and talk to me about things.

There is an extremely valuable truth in these memories.  The most important legacy we leave is how we treat other people.  Think about anyone that you have lost or have been separated from and ask yourself what the very first thing is you remember.  It will most likely be a laugh, a smile, or the feeling you had when you were with them.  It won't be how much money they had, or trophies they won, or the car they drove.

When we leave this earth, our money (if we had any) will be spent elsewhere.  Our house will likely be sold, our car will eventually break down, and our trophies will turn to rust.  But what will remain is the memories that people hold of us.  We will be remembered for how we loved those around us.  We will be remembered for how important we made those around us feel.  Did we make people smile?  Did we make people around us feel safe and important?  What will someone's first memory of us be?

We all must think very seriously about the memory we will leave behind.  Tomorrow is never a guarantee, so TODAY is the day.  Put your energy in the simple things.  Give away all of the things that are so valuable and yet free; your time, your attention, and your heart. When everything else fades away, those are the very things that will live on.

Be well and God bless.  Tom

Tuesday, January 10, 2017

So Many Thanks

Good evening!

I feel compelled to take a moment and thank the many people who have opened up and offered their feelings on the blog.  When I'm writing I compare the experience to standing on a stage where you cannot see the audience because the lights are pointed straight at you. So I can't gauge the reaction of the people who are in front of me.  Obviously I'm hoping and praying that it is reaching someone and making someone's life a little bit better.

I write the blog for four very important reasons:

1. I want to honor Tyler.  He is my son, my "brother", and my hero.  His charisma and personality is larger than life.  This blog puts his beautiful face, and story, and brings him to life in California, China, Russia, Canada, and many points all over the world.  While he is securely cared for in his home, he is able to reach people everywhere in the world.  I think that is a truly awesome way to tell him how much I love him.

2. Someone may be uplifted by our story.  Every time someone nods their head in agreement because they totally relate to what we have gone through, it has touched them. If the blog encourages caregivers to evaluate a situation and strive for positive change, it is all worth it.  If someone out there in any type of situation says to themselves "if this guy and this family can find the strength to move forward I can too", then the blog is doing what I hope it can.

3. The more people talk about autism the more it comes out into the open.  That is the ONLY way things change.  Things change when people speak up.  I can tell you without any shadow of doubt that Tyler's services would have been much different had we not spoken up for his needs.  We cannot sit back and hope things will change.  The squeaking wheel gets the grease after all!

4.  It is therapeutic for me to write here.  Writing is a great outlet for me, as it allows me to relay my feelings, good or bad.  I surely can't draw, can't dance, can't play piano....

Lately the feedback has been very kind.  I'm humbled to hear the emotional responses that the blog has encouraged.  To hear people opening up and sharing their feelings with me is the very inspiration that drives me to write more.  

So to everyone who has said they have laughed with me, cried with me, and related to my writings, thank you.  Thank you for reading and sharing our story.  Thank you for allowing Tyler to take his journey around the world!

Be well and God Bless.   Tom

Monday, January 9, 2017

Team Tyler Hall of Fame

Our family has benefited greatly from being surrounded by very loving and caring people. I've often kidded that we have a "Tyler Hall of Fame" which is a collection of those people who have given of themselves in selfless ways.  Then I thought it would actually be nice to occasionally highlight one of these folks so that they might get the recognition that they so desperately deserve.  And while many readers may not know who the inductees are, I would hope it serves as an homage to someone that you do know, or that it may serve as an example of the wonderful people that are out there.

Today's inductees are my in-laws, Pam and Andy.  

Its important to remember that autism awareness and the general awareness of many mental health issues is NEW, relatively speaking. In my in-laws's generation PTSD was considered "battle fatigue".  Even in my generation children like Tyler were kept in separate schools or classrooms located away from other kids.  This lends itself to older generations being less accustomed to how special needs are treated today.  

What makes my in-laws special is that despite growing up in a much different generation, they opened their hearts to do whatever they could to help.  They worked hard to learn as much about Tyler as they could.  They have never stopped supporting all of us regardless of what we struggle with.  Tyler always knew that he was deeply loved when he was with them. Whether we were having a holiday dinner, or riding the Tower of Terror at Disney World, they have always been right there for him.  They have contributed in more ways than we could ever begin to count, and we would not have been the same without them.

Let us never forget that perhaps the most important people in our lives are the ones that love us even when they don't have the first-hand experience to relate to what we are going through. The ones that refuse to shy away especially when things are hard.  The ones that would never miss a happy time for all the world.

So today we honor Pam and Andy and all of those family member and friends who love unconditionally.

Sunday, January 8, 2017

Small but Mighty

In my own personal life's journey I have struggled with my faith.  It's not an easy thing to admit but it's true.  I especially struggle with the suffering that we experience in this world. It breaks my heart to see war, starvation, and loss.  I don't understand why there are so many children who live in desperation.  I don't understand why so many people are mentally ill and become abandoned and abused.  I've questioned Tyler's role and my role in the entire grand scheme.  

So today as we sat and prayed in church, our pastor invited any of us who had any particular need, or knew of someone with a particular need, to lift it before the congregation. What I heard was very real anguish and pain.  Many of those who spoke up had experienced challenges that seemed brutal and devastating.  I was unable to wrap my head around it all.  And being that this is my biggest area of weakness, it was especially hard to hear.

Then I remembered an offhanded comment I heard at the very beginning of the service. Seeing that the cold and snowy weather had kept the attendance to a modest level, a church musician began by smiling and saying "we are small but we are mighty!".  When I looked around I saw how truly appropriate this statement was.  These good people described such incredible need and yet they were still standing.  They weren't cowering in a corner or curled up under the covers, but rather they were sharing their story and facing their challenges.  They were reaching out to each other and for each other.

The support, love, and faith among this small but mighty group was palpable.  You could FEEL the compassion surrounding all of us.  It felt as though no matter what roadblock was in front of each of us, we had the collective power and grace to persevere.  

I may never understand why we experience suffering, and it may never get any easier for me to accept, but I can say that I learned some valuable things from my new friends today.  I l learned that what matters is that we keep moving forward.  Just because we cannot yet see the light at the end of the tunnel doesn't mean it isn't there.  And no matter how dark things may seem, we can all link arms and walk together until the light returns.  

Yes ma'am, we are small in number but we are mighty at heart. 

Monday, January 2, 2017

I'm Angry

I'm angry.  And when I'm angry I don't pull punches.  

Autism Speaks placed an article on Facebook which was actually a post from a blogger who is the Mom of an autistic child.  It addressed the difficult issue of placing her child in a home and knowing that it was a matter of "when" and not "if".  The blog was beautifully written and beautifully honest.  

And then Autism Speaks fails miserably.  How?  It allowed comments to be placed uncontested below the article.  Many people commented how they identified with this Mother, and how they too have to face the same inevitability.  But other comments where much more negative.  Terms such as "I would never abandon my child" and "I will keep my child with me as long as I am breathing" were far too common.  Some went so far as to shame parents who have made that choice.

Hold on Tomyou might say, you preach that we should be free with our feelings!  And that is 100% true.  BUT....Autism Speaks has an obligation to dispel the very myths which could discourage a family from seeking the help that they need.  They should have (if they were to allow comments) provided counterpoints to those who have a closed mind to group homes.  They should have encouraged proper research and resources to make an informed decision.  Of course group homes are not the answer for everyone, but to allow people free license to "shame" parents who feel it is the right option for them is to ignore their responsibility to people with autism.  

I've let Autism Speaks know that I feel that they were irresponsible in their actions.  I told them that they pledge on one hand to devote themselves to families with autism and on the other hand allowed comments saying that people who place their children in homes are "abandoning" them.  I found myself commenting to these individuals that with the right amount research a good group home is attainable.  I commented that to "abandon" your child is to yourself die and have no secure future for your child.  

I'm angry because it shouldn't be my responsibility to speak up for Autism Speaks.  Isn't that half of their name: S-P-E-A-K-S???   Ugh.

The truth is group homes are a mixed bag.  Some are great, some are good, and some are just not hitting the mark.  There is NO absolute answer.  Anyone who tries to convince someone either way is doing that person a disservice.  BUT, they are worth a tremendous amount of research.  Your case manager can help you to navigate the decision to find out what is best for your individual case.  If anyone is taking the advice of people posting on the internet, they haven't done their own homework.

Autism is winning the war with our children.  Let me say that again:  Autism is winning the war with our children.  Until we get ANGRY and start pushing back it will continue to gain ground.  The enemy comes in many forms:  lack of dollars, lack of understanding, lack of research.  If Autism Speaks or anyone else needs to have the backbone to call BS on someone who spreads false or damaging information, then so be it.  If they want to get angry with me for calling them out, so be it with that too.

The only thing I can imagine that is worse than losing.....is not fighting back.

Be well and God bless.   Tom