Christmas Letter to Ty

Dear Tyler,

Today is, of course, Christmas day.  Many of the things around us are centering on purchasing gifts, Christmas songs, and general hustle and bustle of the holiday season.  Its so easy to become washed away in the overwhelming noise of it all.

We woke up this morning and headed downstairs with your sister so she could open her gifts.  She carefully opened the small present in her stocking, and then moved on to her larger presents by the tree.  Santa (wink wink) brought her lots of cool things like books, art supplies, games, and roller wheels for her shoes.  As has become the tradition, Santa left a note on the Christmas tree to check downstairs for one last special gift.  She couldn't wait to get down the steps to find a brand new shining bike!  It took me back to the time that you were young and came down the stairs to find a pit full of plastic balls for you to jump into!

Later in the morning your Grandparents and Great-Grandma came to share lunch and do a little more gift opening.  It was a very nice day of gathering as a family.

I thought of you a lot today.  On one hand it's very hard to spend the holiday without you with us.  One the other hand, I know this is a difficult time for your behavior.  For whatever the reason, you are much more easily aggravated and you need to remain inside of the things that are familiar to you.  As hard as it is to not include you in our activities, we know you would prefer not to be.  To us it doesn't make sense, but it does to you.

I just want you to know that we all love you.  We missed you today.  We wish that the circumstances were different, but we also understand the reality of who you are.  We want you to always have what you need, even when that means giving you your space.  

We saw the picture that your staffer sent.  It looks like you are really enjoying the radio headphones we bought for you.  It was great to see you smiling while you had them on.

Someday, whether it's during this mortal life or in the afterlife, we will spend our greatest Christmas together.  We will sit together, perhaps exchange a special gift, and talk about the many roads we have traveled together.  It will be the greatest gift I will ever have, and I look forward to it like no other.

I love you son.

Dad

The More Things Change

Good Evening!

First of all....Merry Christmas to all of the readers of this blog.  Secondly, despite the last entry, I'm not sure that the blog is done with me...or I with it.  So here I am once again.  The truth is, Tyler never stops creating a story, and that story never stops needing to be told.  There may be times where I'm not certain where that story is going, but I have to continue to tell it.

There is a saying which goes "The more things change, the more they stay the same" which is a perfect motto for the last week with Tyler.

We last saw Tyler one week ago at the Contemporary Service at our church.  He was very jolly and loud which is an indication that all system are go.  The plan was to meet him and a staff member today at his favorite pizza place for Christmas.  The entire family would come see him and give him Christmas gifts.  It was the best laid plans...

As it would happen, Tyler once again has been a victim of seasonal change.  It is an affliction he has had since he was very small.  For some reason, between Thanksgiving and Christmas, Tyler becomes aggressive and depressed. Regardless of what we have done to try to prevent this seasonal change, it has always reared its ugly head.  The saddest part of this scenario is that you can tell Tyler hates to feel this way too.  In fact, he is miserable with himself.  Yet no matter how much we have always tried to support him and keep things balanced for him, he could not keep from entering this dark period.  For this reason I believe that the issue is chemical in some way.

I made the decision to postpone the pizza visit for another day.  My fear was that if Tyler is being triggered by small distractions, we could overwhelm him and make matters worse.  Its a painful decision because we want to believe that by seeing us it will make him feel better.  But that is our own rationale and not his.  The truth is we have no idea what his inner feelings are telling him.  It was just better to play it safe and make arrangements for another day.

I was at peace with my decision until I was playing songs on my jukebox at home and played "Change the World" by Eric Clapton.  I felt emotional as he sang about wishing he had the power to change the universe, even though he knows he doesn't have that power. There have been more times that I could possibly count that I wish I could change things for Tyler. I wish I could make him understand the things around him.  I wish he could see how much his Mom, Sister, and I love him.  I wish I could take away the confusion and pain he sometimes feels and allow him to live a "normal" life.  I wish I could indeed change the world.

These are things that have been on my mind since Tyler was born.  Regardless of where he lives or how he is taken care of, I still wish I had the magic words that could change his circumstances.  I wish that somehow I could give him the things that for some reason his own health has deprived him of.  

I wish I could change the world.

Time to Say Goodbye

Good evening.

I started this blog about two years ago.  While my ultimate goal was to be a voice for other special needs parents, there is no question that it was a therapeutic exercise for me.  Writing here has been a way for me to process my feelings and make some form of sense out of them.  I always say that I hope that I reach at least ONE PERSON and make their lives better.  In actuality, I have reached my own self and have become stronger.

In this two year period the blog has reached 54,000 people.  I would have been excited to think I reached 540 people!  The truth is, I have no way of telling if any of those 54,000 people found some sort of solace in what I wrote.  I want to believe that there were caregivers out there nodding their head and feeling like my words spoke for them.

If anyone is reading this right now and thinking that anything I said made their path in the least bit easier, I want to thank you.  I'm incredibly humbled by every person that sent a note of support throughout this journey.  The most frequent comment that I have heard is that my posts made them cry.  I've never found this easy to reply to.  I'm sorry?  Thank you??  I try to think about it as I've raised someone's sensibility toward people that are affected by the spectrum.

I feel as though the blog has been successful in that it has given Tyler a voice which reaches people around the world.  I have had views from all over the globe.  There are folks from Russia, France, Hong Kong, China, Germany, Austria, Brazil, and all points in between that have followed the blog.  To think that my boy has reached people all over the globe is incredible.  I believe that he has changed peoples lives.

Unfortunately, I feel as though I have reached a creative conclusion of the blog.  For the past few months I have struggled to keep the message going.  To continue to try and carry on would be wrong if that is where I am at.  I am currently writing for a national website, a magazine, and working on a book.  My wish is that these projects are part of an even larger calling to reach an even larger audience.

I want to thank Tyler for being the inspiration behind every single letter that I type.  He is the light of my life and I could not be more proud of being his Dad.  I also want to thank the amazing people that have been in our lives for so many years.  Tyler's Great-Grandparents, Grandparents, The Yinger Family, Alison, Miss Sue, the staff of TLC, Red Lion Zion Church, Shadowfax, the Sherman Oaks Hood, and so many others that deserve more credit than I could ever give them.  Tyler's Great-Grandfather John who we lost earlier this year: you were an incredible force in all of our lives and we love and miss you more than you could ever know.

My final word is this: be a changing force in someone's life.  No matter what you face in your life, do it with grace.  Turn your experiences into the beacon for someone else to follow.  Love one another.  Be an amazing force for good.

Be well and God bless.    Tom

Autistic Kids Rock!

It is always an honor to talk about pages, blogs, and every other effort that people make to support one another who are caring for people on the spectrum.  We need each other.  And in this day of social media, there are many ways that we can get the message out.  

I am always posting messages which reflect the fact that YOU ARE NOT ALONE.  No matter what you are going through, there is someone out there to help you through it.
  

Please visit the Facebook Page "Autistic Kids Rock" and join the conversations.  You can copy and paste the link below.....


https://www.facebook.com/groups/433947076996295/?ref=group_header

As caregivers, we have to fight for our loved ones every single day.  There is no way that we can survive without support from each other.  PLEASE connect with someone, somewhere.  It doesn't have to be my page, or Autistic Kids Rock, or anyone else I can recommend.  Find someone that speaks to your situation and become part of their community.  Or, better still, find it within you to start your own community.  

There are 250 wonderful caregivers on "Autistic Kids Rock" waiting to welcome new members with open arms.  

Be well and God Bless.

Tom

2 Years

We are quickly coming up on the 2-year anniversary of Tyler's transition into his residential home.  It absolutely blows my mind to think of everything that has changed in this 24-month period.  

I've learned that Tyler can indeed be a strong adult, regardless of my preconceived notions and ideas.  I learned that it was my own fear that was helping to hold him back from being everything he could be.  The comfort level that I was supposedly providing him was really the comfort level that I needed for myself.  But I couldn't see any of these things in the correct context until I stepped away from the eye of the storm.  It's amazing what can happen when you have the ability to step back and see things from a different vantage point.

When Tyler first moved into his new home, he struggled quite a bit.  He was used to having everything done for him almost entirely.  We had stopped trying to challenge his boundaries which caused him to rely on the comfort of our complacency.  Now we were asking him to throw all of that comfort away in one day.  It was quite a shock to his system.  Fortunately he found people that he liked.  He learned that his new home was safe, and dependable.  He found his inner strength.

Over the last two years we have continued to expand his boundaries.  He started going to our church.  He changed classroom instructors at his day program.  He has adjusted to us as "visitors" to his home rather than his primary caregivers.  Its not been overnight, and its not been a miracle cure.  He still has days where pushing his buttons is just a bad idea.  He still struggles with new situations.  BUT there have been a few tremendous breakthrough moments too.  He is tolerating blood tests and dental appointments better than he ever has!

The 2 years has also been a learning experience for me too.  I learned that caregiving had been the most rewarding thing I had ever done, while at the same time being the most damaging.  It wasn't something that I could switch off, but rather it was more of a tide that had to slowly recede.  It was like a light being turned on at the bar at 2am where you suddenly see how ugly the environment and people are around you.  It was much harder that I had ever imagined.

So here we are 2 years later.  Tyler continues to be happy with his staff and surroundings.  He is doing well in his day program, and getting the occasional trip to a restaurant, church, bowling, and other things that are happening around town.  Most importantly he is getting to hang with a roommate and staff that he likes and trusts.  He feels safe, secure, and I know we are all watching over him.

As for me, I've been able to adjust.  There are times that I miss having him so close to me, but I also understand that I wasn't helping him anymore.  Now that I am away from the eye of the autism storm, I could never survive again in that role.  I still love him with every fiber in my body, and I will always look out for him in whatever role I have in his life.  But I know that chapter in our lives is behind us.

I just hope someday we will be in a place where we can talk about all of these things.  So I can explain to him how much we love him and that everything we did was out of love for him. 

Vegas Tragedy

It is sadly ironic that I wrote an entry last night about how difficult life is in today's world.  I woke up this morning to the news that many, many innocent lives were torn apart by a single gunman.

I have a 26-year-old and an 8-year-old that love people, and they both display empathy toward their fellow man.  Thankfully Tyler will never have to see the kind of news that unfolded today.  As for my daughter, we are left to figure out how to explain something so evil. 

Being Tyler's caregiver made me very sensitive to things going on around me.  I still fight for others to treat him with compassion and respect.  I also spent 25 years making sure that we protected everyone around us from experiencing his aggression and outbursts.  It was a quarter of a century mission to make sure everyone was well taken care of.

Then we see the events of the last 24 hours.  I do not understand the way people treat each other.  It breaks my heart to think of the anguish being felt by so many people tonight.  And for what?  

Somehow we have to get the message: we are all we've got.  We have to take care of those in Texas, and Florida, and Puerto Rico.  They are our brothers and sisters regardless of the language they speak or the color of their skin.  We have to take care of our sick and our disabled.  We need to respect and care for our elderly so that their years of life do not end in loneliness and poverty.  We must teach our children to care about each other and to strive to improve a world which we have foolishly wasted away.  

Tonight I pray for those lost to such a senseless act.  I pray for those families and friends who lost loved ones.  I pray for our nation that we step back and look at ourselves.  We have to stop the stupidity and realize that we are killing each other, and our planet.  We are not leaving a world to be proud of for our children. 

We have to dig deep and find the courage and faith to continue on.  We must help each other and watch over each other if we are ever going to conquer evil.  Most of all we have to BE THERE for each other.  If you see someone hurting....reach out to them.  If someone seems to feel alone....talk to them.  

Tonight, like too many other nights, we mourn and we move on faithfully.

Be well and God bless.    Tom

Fear Itself

John Kennedy famously said:  The only thing we have to fear is fear itself.

How many times have all of us been afraid of something and found that our greatest fears did not live up to reality.  It's those moments where we reflect and say "that wasn't as bad as I thought!".  We almost feel silly for worrying so much.

As caregivers we have likely come by our fears for good reason.  We have likely experienced heartache beyond what most people can fathom.  With Tyler I came to expect that bad things would happen.  So many endless nights sleeping beside him in the hospital will wreck you as a person.  My fear became waiting for the next shoe to drop.

Unfortunately fear perpetuates itself.  It feeds off of itself.  It becomes its own self-fulfilling prophesy.  It tells you to give up before you have a chance to lose!  It makes you look only at the worst-case-scenario

So what does JFK mean by this statement?  We cannot live in fear.  Regardless of what our situation is...we cannot live in fear.  Our minds enjoy tricking us by making us believe that everything will crash and burn.  I was afraid that Tyler would break down if we were not taking care of him, yet he has survived and thrived.  I was afraid that by leaving my job of 13 years I would lose everything, yet a month later I realize I am not only ok, but doing much better.

Why do we do this?  My opinion is that we are conditioned as consumers to protect against the unseen bad thing.  Think about it, we are surrounded by ads that show us how awful it would be to be bald, or impotent, or have eyelid pain.  We think we either are already a victim of these things, or we surely will be.

Have you ever had one of those maddening friends that always seem to survive everything?  No matter what risk they take they come out just fine.  These people drive me crazy!!  Its like they have teflon clothing and can walk through fire and not get burned.  But why can they do this?

I believe the answer is that we can either choose to live in fear, or choose to live without it.  Rod Stewart sings "Luck is believing that you are lucky.  That's all.  And showing just a little bit of faith".  Just as fear feeds off of itself, so must feeling confident.  

Being a caregiver is extremely difficult.  But it will be difficult regardless if we walk in fear or not.  So why can't we learn to walk with that teflon jacket too?  Things will still stick to us to be sure, but maybe we can win some of the smaller battles, which can only help in the long run.

Be well and God bless.    Tom

A Difficult World

Good evening.

Unfortunately our children are growing up in a very difficult world.  In many ways they are facing more challenges than I ever had to while growing up.  That's not to say that we didn't have our own challenges, but it is just different.  Perhaps the problems facing our children today are similar, but they certainly are magnified if nothing else.

In my childhood the parents had to worry about us using pot and drinking wine coolers.  There were exceptions of course, but for the most part this was the worst of it.  We experienced bullying inside of schools and for the most part we were told you had to "get tougher".  

Now, we have a meth epidemic.  Young people in our community are dying by the day and even those trying hard to fight it are losing the battle.  We also now have social media which provides bullies a forum for spreading pictures and rumors which are driving more children to desperate measures.  We can find tapes of kids fighting, having sex, and doing horrible things to other kids.

Our community is now faced with a young man that has committed suicide.  Apparently, for reasons I do not know, he decided life was too hard and he hung himself.  He was a high school senior.  He could not have been more than 17 or 18 years of age.

I heard about this during church this morning.  Our Pastor prayed for this young man, and then he talked about the couple of children in our congregation, one of them being my daughter.  He prayed that these 2 girls, who are such a blessing to all of us, that they be protected from the evil and the tragedies we are seeing so many children being pulled into.  

I looked at my daughter, and my son.  And I wondered how in the world I would ever have the courage and strength to protect them.  The bad things in the world seem to be so big compared to little me.  

How do we protect our children in such a difficult world??

I don't have the answer.  It scares me to death honestly.  What I do know is I love them, and I tell them both every day that I see them.  I'm sure I tell my daughter multiple times every day that I love her.  When they do something great I let them know how proud they make me.  We also try to surround them with people who share our desire to protect them.  We have them involved with the people at church, where we hope they are hearing powerful messages of love and faith.  We have Sam involved in healthy activities like swimming.  

Is it enough?  Only time will tell.  It's a difficult world.  

Be well and God bless.     Tom

I'm Baaaack

Good Evening,

Over the last few weeks, life has really taken a turn.  While it really has little to do with Tyler, I think its worth discussing nonetheless.  After all, as caregivers we often experience things that are outside of the scope of caregiving.  In other words, life around us will still change regardless of our struggles.  We certainly don't get a free pass from the ups and downs of typical life because our lives are not typical. 

At the very end of April I returned from vacation to find out my company wanted me to relocate to South Carolina.  My choice was to relocate or be replaced.  After nearly 13 years I was faced with perhaps my most difficult career decision ever.  On one hand I was looking at suddenly needing to find another job with comparable pay, and on the other hand making a secure employment decision but moving hundreds of miles away from Tyler, our family, friends, church, and everything else we had built over the last 6 years.  Both prospects were terrifying.  There seemed like there could not be a correct answer.

Something that my wife said made all the difference.  She told me that if we refused to relocate she would stand by me and do whatever it took to make things work.  It confirmed for me what I already felt, we enjoyed what we had built here and we needed to fight for it.  Suddenly I felt at ease.  I felt prepared that no matter what, I was making the right decision. Because we were doing what we felt was best for the family as a whole, we suddenly stopped feeling the pressure and started to let it play out.  It reminded me of JFK's quote "The only thing we have to fear is fear itself". 

Once the anxiety disappeared and we came to terms with our decision, things came into focus.  I had reached the limit with my previous company.  In many respects I had outgrown them, and they had outgrown me.  There was no blame to be assigned, it was just time to part ways. 

I was able to find a position offering very comparable pay and benefits.  After my first two weeks I am finding that they are exactly what I have needed for a while, a new opportunity in a friendly and supportive surrounding.  In other words...so far so good.

My takeaway is that as caregivers we always want to go with the high percentage play.  In other words, we don't want to assume unnecessary risk.  We find ourselves altering every decision to fit the safest scenario.  I can honestly say I'm as guilty as everyone else.  But we cannot be afraid to look at every angle and do what's right instead of what's safe.  We owe it to ourselves to take a chance on the low percentage play and follow it through. 

So to my caregiving followers, I challenge you!  I challenge you to trust your gut just a little bit more.  Give yourself enough credit to understand that you have become stronger than you realize and you will make it no matter what.  Try to be about what is right, not what is easiest!

Be well and God bless.     Tom

Good Memories

Good Evening,

This blog deals with some really tough subjects.  And while it's important to talk about the hard stuff, I also would like to talk about the good things.  Tyler has given me some of the most wonderful memories of my life.  I would like to share a few that stand out to me which represent the relationship he and I have had over the years:

1. A morning on the beach.  During one vacation very early in Tyler's life (he might have been about one) Tyler and I woke up before my wife.  I decided to take him down to the beach and take a few pictures and some video tape of him.  He was happy to look around, feel the ocean breeze, and hang out with Dad.  Its very symbolic of our relationship because he could always be comfortable and content, so long as we were together.

2. Jumping in the pool.  We have home video of Tyler standing at the edge of a pool, jumping into my arms.  He is laughing, jumping in over and over again.  Each time he jumps into my arms, he squeezed my neck with a big hug.  It is very symbolic of the trust we had built with each other.  He knew I would always be there to catch him.  He also showed me his appreciation for being there to catch him.

3.  Up on my shoulders.  Tyler spent much of his early years up on my shoulders.  I even did an 8-mile walk for diabetes with him up on his perch.  He enjoyed the enhanced vantage point, and I liked that he was safe, controlled, and happy.  He would often wrap his arms around my head to hug me, or stretch way down to get face-to-face with me so he could express himself to me.  He never tired of being up there.  

4.  Belly laughing.  Sometimes things strike Tyler funny.  It is usually associated with a sudden loud noise.  I always tried to make him laugh by doing loud or crazy things.  The funniest thing in the world was when I would do something to catch his funny bone.  He can laugh so hard that you wonder when he will ever take a breath.  As he is laughing he points at me and says "Daddy" as though he is saying that Daddy did something that made him crack up.  It is absolutely real and unfiltered joy coming straight from his very soul, and is the very definition of JOY.

5.  Walks.  The thing I enjoyed the most, and miss the most about him is our long walks together.  In all of our years together we never held a conversation, but we always knew how we felt.  We walked different trails.  We walked during all seasons.  Tyler never knew where he was going, but he always had his chest out and his voice happy and loud.  He walked to my right, and used his left hand to gently brush against me just to verify that I was there.  He walked very fast, but never wished to leave me behind.  Best of all, once or twice per walk, he would give me the sign language sign for "I love you".  

6.  Wrestling.  Tyler was born while I was barely in my 20's.  I still liked video games and wrestling.  One of his favorite past times was to wrestle his dad.  There was Tyler, barely able to walk, wanting me to body slam him on the couch or bed.  I could get him to imitate Hulk Hogan, Ric Flair, or Van Vader before he could say 5 words.  He squealed with joy when I pretended to suplex him, or body slam him, or pin him to the mat.  He won most of our matches, and even learned to say "two...three!".  I never complained about how fast he counted.  And while it seemed an innocent and dopey activity, he had learned that he could trust me to never hurt him.  At that time he learned human contact was a healthy thing.  And that being goofy is fun.

All of these things prove that while I took my role as Dad very seriously, there is always time to laugh.  There is an appropriate time to be silly and not take life too seriously.  Its such a blessing to look back on these memories and smile and laugh as I type.  It's also important to remember that while there are struggles, there is also tremendous love and joy.

Be well and God bless.   Tom 

Isolation

It has been a tremendous honor to continue the blog series for Jason's Connection.  There is such wonderful power which comes from caregivers banding together and sharing pieces of themselves.  The website includes content in current events, inspirational stories, resources, art, and blogs.  Most importantly, it provides us all with a feeling of belonging.

When Tyler was a baby, I remember how people would love to talk to him, and have him around.  We went to gatherings, relatives, and out to eat.  We continued with hobbies as usual, and did our best to maintain a "normal" life.  Tyler would gladly tag along for whatever trips and activities we planned.  I have fond memories of walking on the boardwalk at Ocean City, Tyler up on my shoulders.  He loved to watch people and wave at them as they passed.

Soon Tyler grew older and the behaviors began.  He was bigger and much less comfortable with his surroundings.  Getting into enclosed places or into crowded places made him edgy and aggravated.  This is where the isolation began.  I didn't recognize it at first, but it was starting.  

As Tyler grew older still, the behaviors became even more intense.  He was especially difficult to handle when I would be away for the evening.  We created more and more strategies to make sure I wasn't separated from him for long periods.  Eating in restaurants became more difficult, so we started to rely on more take-out.  We carefully selected our vacation destinations to match his needs.  

During one of the more difficult behavior periods, I was scheduled for a weekend bowling tournament a few hours away.  It was rare at this point that I would even consider this, but I felt compelled to have a weekend with friends to have a good time.  It wound up being a disaster.  Tyler was anxious that I wasn't around, and his behavior escalated all weekend. Each time I called home my wife was crying and frustrated as to what to do with him.  I counted down the hours until I got home again.

And so it would be as the years went on.  We withdrew from activities more and more.  We had some wonderful friends that would come spend time with us at our house, but we no longer visited at anyone's home.  Even our family saw us less because it became harder to visit them.  Before we knew it, we were spending every day just trying to survive without major incidents.  It was like we circled the wagons to keep ourselves, Tyler, and everyone else comfortable and safe.

In the last few years of Tyler living with us, we had become extremely isolated.  Tyler and I would spend our evenings downstairs in the man cave.  He was fairly happy playing his wii bowling, and doing other activities, and I would watch TV or work from my laptop.  My wife and daughter would be upstairs in the living room.  We were actually to the point of isolating ourselves from EACH OTHER.  

Isolation usually does not happen overnight.  Rather, it is a slow progression that one day I looked back on and realized just how far it had gone.  That isolation contributed to my anxiety and depression.  Worse yet, the isolation can feel like the best option, or the only option, so we did it more and more.  Its like a cancer that slowly spreads.

It's easy to say...don't isolate yourself!  But reality is what it is.  The important thing is to step back and take inventory of the ways you are isolating yourself.  Once you do that, find ways to minimize the isolation.  Find some alternatives to what you feel you cannot do.  Try to take full advantage of opportunities that you do have.  Simply recognize that it is a dangerous and debilitating element of what we do as caregivers and that we must fight it at all costs.  We must preserve our sense of self, even in small doses.

My prayer for all caregivers tonight is to get that breath of fresh air, even once in a while, that lets us know that we are still social individuals capable of happiness.

Be well and God bless.   Tom  

A Rough Subject

There is an issue out there that I have seen very little discussion on.  This issue is unthinkable.  It's an issue that gets the occasional story in the news, we know it exists, but we don't talk about.  But I will....

Caregiver murder-suicides are real.  And they happen much more than we ever hear about. One study showed that 20% of caregivers fear that they could become violent at some point with the person they care for.  The same article sighted that over 30% of caregivers admitted that they had verbally or physically abused that person they cared for.  Cases of elderly murder-suicides has risen significantly over the last decade.  This often happens when an elderly caregiver is stricken ill and realizes they cannot care for their loved one any longer.

What causes this to happen??  These are people that LOVE their child, or spouse, and would do anything for them!

• They have not secured adequate services.  Often, caregivers do not know where to go or how to get the support that they need
• They have not secured adequate services.  No...this is not a typo.  Unfortunately there are those times where adequate services do not exist.  Worst yet, some caregivers seek relief and are turned away
• Untreated depression.  Many, many caregivers are at risk for anxiety and depression disorders but do not seek help
• The "nobody else can care for them" syndrome.  Caregivers will believe that without them, the person they give care to will suffer terrible consequences.  I'd love to say that this is totally irrational, but with a lack of available services, it can be a scary reality
• Negative stigmas.  Without doing research, caregivers can assume that all facilities are dirty, cruel, and unregulated.  While poor facilities do exist, there are many available facilities that provide tremendous support
• Isolation.  Caregivers that have been pushed to such tragic levels may likely have a feeling of being alone.  They can feel that nobody else understands and that the responsibility has been placed fully on their shoulders

I would be willing to bet that every caregiver with a significantly disabled person has at least wondered if things would end in such a manner.  I know I did.  I was afraid that someday I would become ill and no longer be able to care for Tyler, and that I may be forced to make an unthinkable choice for both of us.  This, as I would come to find out, was an uneducated and hopeless train of thought, perpetuated by a lack of faith.  

HOPELESSNESS is the common thread with most of these incidents.  The caregiver becomes so deep in the woods of depression that they believe there is no answer, no way out.  They feel as though their own lives are gone, never to return.  

There is always hope.  Let me say that again...there is ALWAYS hope.  Even when you cannot see it, there is hope.  But to find that hope, it means reaching out to get help.  The help may come in the form of an agency that can provide services.  The help may come from family who had never been asked before.  The help may certainly come from a support group, or church family.  Afterall, the right church will help restore lost faith.

As hard as it is, we MUST recognize as caregivers that we are at risk.  When we feel that hope is slipping from our fingers, we must find means of support to restore us.  We must always take a proactive approach to ensure that we, and our special loved one, are set up to live comfortably regardless of the outside circumstances.  In other words, we must never allow our lives to become void of support and help.

Be well and God bless.    Tom

Spiders?

First of all, full disclosure.....I like spiders.  I think they are fascinating creatures that do great things and get an incredibly bad rap.  Perhaps it was all of the 70's movies where the spiders took over towns and sucked people's blood!

The truth is, spiders are beautiful and useful.  They make sure that our lives are not overrun with insects.  House spiders, if largely left alone, will eat all other insects in your home. Look at it this way...if you have a spider in the house, he is eating SOMETHING!

Spiders do invoke fear in many people.  The biggest reason for this is the fact that they are largely misunderstood.  People fear what they do not understand.  Seeing a spider for most people means they are going to attack you, want to hurt you, want to crawl in your ear while you sleep, or will go to the nearest toxic dump and try to grow 8 feet tall to take over the world.  These are the common misconceptions.  We fear what we don't understand!

Such is the world of those with mental, physical, and emotional disabilities.  So often there are people who are not properly educated, and think it's ok to shun people that they do not understand.  Maybe someone looks at Tyler and wonders if they can "catch something from him".  Or they are afraid of him because they can't handle that he is different.  They might feel better if he is placed somewhere out of sight from everyone else.  

Tyler is still beautiful and useful, just like that spider.  A person with cerebral palsy and confined to a wheelchair is still wonderful, smart, and charming.  A person with Alzheimer is still fascinating to listen to and share time with.  People that are considered "different" have amazing stories to share because they see life and live life much differently than we do. They are not to be shunned or feared just because they look different or behave differently!

The most rewarding thing that a "typical" person can do is to educate themselves about the wonderful creatures around them.  Just like the spider, Tyler was created by God to serve a very specific and wonderful purpose.  Take the time to understand and feel the beauty in all things...ESPECIALLY those you don't fully understand.

Be well and God bless.   Tom

Favorite Memory

I often receive questions that I try to answer here.  I recently got one that I wanted to address:

"What is your most memorable Tyler memory?"

I have a handful that would qualify.  I've written about a few of those in the past.  One that I would rank right up there happened just 2 years ago.

My wife and I visited Disney World in 2015 to celebrate our 25th wedding anniversary.  We took our children along, as well as my in-laws.  At this time we also knew that we were working on placing Tyler into a residential home.  Something inside of me knew that things were about to change soon.  

We wound down our vacation with one last day at Epcot.  Over the years we had spent many days there.  We took many pictures in front of the "ball" each visit.  I can remember how much Tyler loved riding Test Track, and all of the walks around the nations.  Tyler loved watching the fireworks show at the end of the day.  I can still picture him laughing at the noises and lights until I thought his belly would bust.

On this particular day I could feel that we were at an ending point of something.  It was as though I knew we would never pass that way again.  Tyler did not have a need to be back there anymore, and I would never have the opportunity to take him again.

As we left the park for what I knew to be the last time, I knelt down beside him.  We smiled at each other, and I told him that I was so grateful that he was with me so many times to enjoy such a great place together.  I told him that no matter how many times I came back, it would never quite be the same without him.  And I told him that it was an honor and a privilege to have given him that experience.  I told him that I loved him as much as any Dad could love his son.

While perhaps not the most joyous occasion, it was very memorable to me.  It was a moment of mutual respect and appreciation for each other.  It was a quiet and private memory that means a lot to me.  In that moment I felt like we were beginning our process of letting go of the relationship we had had for so many years, and preparing to move into a new one.  It was also a moment to appreciate where we had been and what we meant to each other.

Tyler may not have a deep understanding of the world, or how people function within it, but he seemed to have a feel for what was happening in our relationship.  On that day, he let me know in his own way that he was ok with us, and he was ready to turn a new page in our lives.  

That moment....that small snapshot in front of our favorite attraction may have seemed insignificant to someone passing by, but it is a moment that I will always remember.

Be well and God bless.    Tom

Double Edged Sword

Good Evening,

We got to visit with Tyler a few times over the last 2 weeks.  He is continuing to do an amazing job in his residential home.  I'm so happy that HE is happy.  

Just this week I picked him up to meet us for some pizza.  As soon as he got in the car with me, he began to do the familiar habits we always had together.  He started to imitate my little physical driving habits the way he has always done. He pretended to hold the gear shift the way I do.  He wanted me to say and do all of the little things that he was always used to. Its almost like he never missed a beat.  We went and had a nice dinner.  Afterward, he was completely at ease heading back to his house and settling in.  In fact, once he did settle in, he was eager for me to leave him to get back to his "normal".

As his Dad, who loves him so much, it's a hard thing to reflect upon.  After so many years of caring for him, I waited for the day where I wouldn't be so needed by him.  It isn't easy to be someone's primary caregiver.  Every thought, or idea, had to start and end with how it would effect him.  There is no question that having someone depend on you heavily every day is a draining experience.  This holds true whether you have a child with special needs, or a parent with cognitive difficulties.  At times, it made me feel like I couldn't think for myself, or care for myself.

On the flip side, there is the new feeling of Tyler not needing me the way he did before. Watching him ask me to leave his space so he can get back to his routine leaves me with a very bittersweet feeling.  What the heck is wrong with me??

The truth is, I was his caregiver for 25 years.  In 25 years I became extremely conditioned in our environment.  In that time there became a stark difference between what I knew to be true, and what my emotions were telling me.  My head operated on one level, but my heart was always on a slightly different level.  

So when Tyler smiles and waves goodbye so eagerly, my brain is very happy that he feels so comfortable in his home, but my heart hurts because he doesn't need me the way he used to.  I don't want to be his "everything" anymore, but I hate the feeling that comes along with it.

My takeaway is that I have to follow my brain on this one, and try to soothe my broken heart. His emotional well-being is what is important, not my own.  And just as he has had to figure out how to fill his life in a different way, I must do the same.  

Be well and God bless.     Tom

Empathy

Alice Walker wrote:  "This is a wonderful planet, and it is being completely destroyed by people who have too much money and power, and no empathy".

Empathy is a very difficult thing.  It is the ability to reach into someone else's heart and feel what they are feeling.  It is the rare ability to not just understand what someone else is feeling, but to actually feel what they must be feeling.  It is a wonderful gift, but in today's world it can become a very heavy thing to carry around.  

I ask myself, all the time, WHY do children get cancer?  WHY do children go missing?  WHY are so many people becoming addicted to drugs?  WHY are so many children born on the autism spectrum?  The truth is....I don't have any answers, and I weep for every person that struggles.

Personally, I think we worry about the wrong things.  We are consumed with right versus left, who the celebrities are dating, and how much the Yankee outfielder is being paid. Meanwhile, we have 2 million children every year who are trafficked into the commercial sex trade.  We have over 7 million people die every year from cancer.  Approximately 1 in 60 children are diagnosed with autism.  1 in 6 people in the US do not have enough food on a daily basis.  Approximately 11% of adult homeless individuals are veterans.  

Somehow, some way, we have to become a society that rejects the frivolous nonsense, and begins to open it's eyes to the suffering of our brothers and sisters.  We must all feel the empathy that is required to reach out to those less fortunate than us.  We must reject the "politics" and embrace the humanity that is neighbor helping neighbor.  Having a single child sold into slavery is an abomination, having a single veteran sleeping in a subway is a tragedy.  Needing to beg for resources to cure cancer, while designer drugs have their own commercial time is horrible.  Having any child or adult with mental health issues go untreated is something that we will all have to answer for someday.

I ask everyone today to please set aside their political feelings, agendas, and animosity, and pledge to stand up for all human.  To not judge by someone's color, religion, orientation, or beliefs, and to start treating them with the compassion that all humans deserve.  To place our priorities with those less fortunate than us, hurting, disabled, sick, and lost.  

Matthew 10:8 says "Heal the sick, raise the dead, cleanse those that have leprosy, drive out demons.  Freely you have received; freely give".  

In other words....if you have been blessed with food on your table and good health, you should ensure the same for others.

Lets become a people who care for one another.

Be well and God bless.    Tom

Autism and Wandering

Good afternoon.  

I wanted to address a very important topic today.  Nearly half of families with autistic children report that their child have wandered or "escaped" from a safe environment.  This obviously places our autistic children at an increased risk for accident, injury, and foul play.

I remember a few occasions in which Tyler somehow got out of sight and it was perhaps some of the most frightening moments of my life.

One very minor incident was at a picnic at my parents house.  Tyler was not very old and he somehow got in a position where everyone else thought someone else had him.  You know...that..."where is Tyler?  I thought YOU had him".  What made it scary is that my parent's property has a dirt road on one side and a large creek on the other.  I immediately sprinted for the creek looking for ripples as I ran.  I barely reached the bank when I heard everyone shouting that they found him.  He hadn't gone very far and didn't seem fazed that he had slipped about 20 feet from view.  My heart, however, had stopped beating.

Another time was a lazy weekend morning.  My wife and I were sleeping in a bit, and Tyler was awake but not doing anything in particular (or so we thought).  Our phone rang and it was our next door neighbor George.  He asked if we knew Tyler was out walking around in the back yard.  I said we did (which was a lie...we didn't), and sprang up to see where he really was.  Sure enough, he had opened the back screen door, and walked out into the back yard, fashionably clad in white socks, a diaper, and sunglasses.  It seemed he wasn't intent on really going anywhere, he was just taking in the sunshine.  

Yet another instance came when we had a summer caregiver.  This agency strictly forbade the transporting of Tyler unless we gave our consent, which in this case we had not.  One day the agency came to do a surprise check on the caregiver, and she was gone.  So was Tyler.  We searched the closest park thinking they may have driven there instead of walking. No Tyler.  They tried calling her but she did not pick up.  I freaked.  She returned about 30 minutes later, and Tyler appeared to be fine.  They would not let her on my property for fear that I might retaliate and make matters worse.  She refused to admit where they had gone, and she was fired.  I checked Tyler's physical condition and his overall demeanor and it was pretty obvious that he had suffered no distress of any kind.  

Pretty scary right?  We consider ourselves to be very loving and protective parents, yet things were still able to happen.  And in each case, Tyler wasn't even intending to leave the safety of our watchful eye.  Imagine if he had more of a tendency to try and get away!

There are some very important things to remember when we are protecting special needs children or adults from wandering or escaping.  First, what attracts them to leaving their safe environment?  This could include:

• Attraction to bright lights, traffic lights, signs, or brightly colored items
• Moving items such as fire trucks, buses, trains, construction equipment, etc
• Attraction to water, which is very common
• A desire to "escape" from being overwhelmed and overstimulated
• General confusion or memories of some other area from their past
• An absence of recognizing dangers

There are many ways we can reduce the odds of wandering or not being easily found:

• Use alarms, bells, buzzers, etc. to signal if an exterior door has been opened
• Utilize fences and locks which are not easily deactivated
• Have relationships with neighbors so that they will alert you if your special person is seen outside of the safe environment alone
• If feasible, have your special person wear a form of ID like a bracelet
• Register your child with a Child ID program so that their fingerprints and picture are on file

Tyler's safety and security has always been a constant concern.  As he grew and changed, our strategies had to change too.  It has never been easy, and we have certainly never been perfect, but we have always done the very best we could.  

Be well and God bless.   Tom

Radio Gaga

Good afternoon,

Listening to a local radio station a few days ago, I heard something that I objected to.  There was a conversation between a few on-air personalities, and one of them mentioned that they had no issue with confronting a parent in public if she felt that their child was acting inappropriately in public.  Hearing this made my blood turn cold.  (There was a bit more to it but this is the main gist of it).

What this person failed to understand, in my opinion, is that they cannot simply look at a child's behavior and understand the cause.  Is the child perhaps on the Autism spectrum? Is the child being treated for serious issues such as abuse, neglect, or other circumstance? Worse yet, is the child suffering from such issues and not receiving any treatment at all?

As Tyler's Dad, I have felt the stares.  I have seen people whisper and snicker in his direction.  My wife has suffered in silence when Tyler hit at her, or kicked, or pinched.  It can feel as though someone is holding a "BAD PARENT" sign directly over your head.  I doubt that there is any caregiver who hasn't found themselves feeling this way.  Our hearts break because we know our children are not bad.  They don't deserve to be mocked, or stared at like they are less a person than anyone else.  

And they, nor we, deserve to have someone randomly come up to us and offer wisdom for a subject they know nothing about. 

I called the radio station and had a friendly and constructive conversation with the station director.  I explained that my concern was that if an on-air personality is so boastful about passing judgment and reacting inappropriately about children in public, it sends a very poor message to those people that believe tolerance is four letter word.   The station director was extremely understanding and actually agreed that the conversation was in poor taste.  He assured me that the personality meant no disrespect.

On the surface it may seem like an innocent and unimportant thing to tilt at windmills about, but unless we educate people on being tolerant and resisting that urge to pass public judgment, we will forever face this issue.  I'm realist enough to understand that some people cannot be educated because they don't WANT to be.  And some people will always fear what they don't understand.  But I do believe that generally there are more people who are more inclined to be accepting.

Our special needs loved ones deserve understand and respect, even when they are "disruptive".  We must all be educators to help bridge the typical world with their world.

Be well and God bless.    Tom

Father's Day 2

I believe in being a good dad.  In fact, I believe that it is the most important role I play in my life.  

Studies may very on the degree of effect that a fatherless home has, but most of them agree on very basic points:

• About 1/3 of children in the US are growing up without a father figure
• Children without a father figure are significantly more susceptible to incarceration, depression, and suicide
• Females raised without a father figure are at higher risk for teen pregnancy
• Some studies suggest that over 3/4 of children with behavior disorders come from homes without a father figure

Make no mistake, this is the massive social problem that nobody is talking about.  And I want to honor single moms, adoptive parents, extended family and female couples who successfully step up and fill that void.  It can be done.  However, there are far too many men who do not own up to their responsibility.

Consider:  A daughter will most likely accept being treated the way their father treats their mother.  In other words, if a man is absent or treats her mother with disrespect, she will accept absence and disrespect from her own relationships.  FATHERS MODEL WHAT MEN ARE LIKE FOR THEIR DAUGHTERS.

We get so concerned with Russia, and Obamacare, and Bill Cosby, and the couple from Flip or Flop, that we fail to recognize the most basic of problems, which is dad's are not generally doing their end of the bargain.  

So when we look, as men, at the world, and we curse and shake our fists, we have to ask ourselves if we have done the most instinctive thing in the world, which is to raise our children with a sense of discipline and honesty.  Are we raising them prepared for the world? Are we there everyday possible to lead by example? 

I fight for my children every day.  I hug my children, tell them that I love them, and model the behavior toward others that I want for them to show.  I am deeply flawed and have no chance to ever be perfect, but I plan to leave my children with no doubt that they are loved, respected, and expected to treat the world with decency.

Let's make Father's Day more than just a time to get a pat on the back and a pretty Hallmark card, and let it be a reminder that we have a tremendous responsibility to be up to the task every day.  Our future depends on it.

Be well and God bless.    Tom

Father's Day

Good Morning!

First of all...happy Father's Day to all of the dad's out there.  I believe there is NOTHING in this world more important that a man can do to contribute to mankind than being a good husband and father.  Many of the issues that we face today can be traced directly to the lack of a father figure in so many lives.  

My father was raised in a very different age than I was, and certainly different than that of my children.  He was raised to believe that a father was the sole provider and disciplinarian. The mother's "job" was to tend the house and raise the children.  It might be easy today to look down on a stereotypical upbringing like this, but this was just the society he and his parents grew up in.  There were not a lot of expressions of love and affection to go along with this set of beliefs.  It was more an implied thing.  After all....putting food on the table and having a bed to sleep in shows that he cared about you.

I think I can safely say that I am different than my dad in many ways.  He is extremely mechanically inclined.  He has worked on cars and machines and all sorts of stuff.  I'm lucky if I can get a can opener to work right (no...seriously).  When my employees saw me with a tool in my hand, they would make sure somebody had a phone at the ready to call 9-1-1 (no..seriously).  My dad is not what I would consider a social and expressive person.  I teach classes, write blogs, and smile at strangers.  My dad believes that strength is about how you project how strong you are, while I believe strength is how vulnerable you can allow yourself to be.

There are a few things that I am very blessed to have learned from him however.  I learned that being a good father is to be fearlessly devoted.  I've learned that being honest and doing the right thing is what has to be done, even when it's painful.  I've learned that I make the world better when I raise my children to have respect for others.  And I've learned that while I'm on this earth, no matter how I choose to do it, I should be a person that can be relied upon by his family and friends.

If I leave this earth tomorrow, I want people to say that I was a good neighbor, a good friend, a good husband, and most especially a good dad.  I want my children to live on and know that they were loved and cherished in the best way their dad knew how.  And I want for my daughter to someday carry that love and devotion to her own husband and children.

Happy Father's Day to all dad's out there.  And God bless.     Tom

Two Different Kids

We have two very different children.  In fact, they have almost nothing in common.  Tyler is a young man stuck in an aging man's body, and Sam is an 8-year-old body with a 16-year-old sass.  

I'm often asked if I was drinking when I decided I wanted another child after our experiences with Tyler.  No...but I've been drinking ever since!  (I'm kidding of course).  

I'm just one of many special needs parents who juggle non-typical and typical children.  This is a situation that I believe is under-discussed and under-appreciated.  After all, it mixes the challenges of giving intensive, and exhaustive care to the non-typical child, with the normal and no-less-exhaustive challenges of the typical child navigating in the typical world.  

In raising Tyler, we basically took the ideals of normal parenting, opened up the nearest window, and tossed them out. In fact, it was when we stopped trying to think "inside the box" and began to have an open mind every single day, that we started to understand him better. Tyler's thoughts, for the most part, were minute-to-minute, which meant that we just had to try to relax, and take handling him with that in mind. 

Then came Sam.  I think Sam took every typical tendency that Tyler was missing out on, ramped it up to five times the regular level, and ran with it.  She wants a phone, make-up, and probably even has a plot drawn up in her room that outlines how she and a few friends can rule the world.  She was born stubborn, opinionated, and willful. But she also has an amazing presence and charm that comes with all this drama.

Today I want to honor those parents who do the impossible, which is to raise a special needs child in this difficult world, and still have the skill and courage to raise typical children as well.  It's like having a degree in microbiology and deciding "heck....why not study rocket science while I'm at it?!?".  It truly is two different parenting methods.

I said in the opening that they have almost nothing in common.  While this is true, they do share some very important things.  They are both very loving and accepting people.  They are both beautiful inside and out.  They both display tremendous courage every day.  And most of all, I am especially proud to be raising them both.  

Be well and God bless.    Tom  

RIP John

Good Evening,

With a heavy heart we report that Tyler's Great-Grandfather John has passed away.  We were able to visit with him this morning and show him a lot of love.  We even got a few smirks and giggles when we pretended to needle him a little.  We let the sunshine into the room, gathered around his bed, and showed him every bit of respect and love he earned in his 86 years.  

One thing we made sure John understood was that Tyler was ok.  I let him know that Tyler was right there with him, in his heart, and he always will be.  

I don't have to think too hard to remember John getting down on the floor with Tyler and rolling the car back and forth.  Or when he tried to help Tyler learn to sit up on the couch.  John would always ask Tyler if he was a "funny fella", and Tyler would smile and say "yeah".
There was no question that Tyler was was very important to John, and John was very important to Tyler.  John took his role in Tyler's life very seriously.  Tyler's character has a lot of John in it to be sure.

On the surface, John and I didn't agree on very much.  We were politically on opposite poles.  He was born in a "man's-man" kind of era, where I believe in a bit more political correctness.  Someone who didn't know us might think we didn't get along.  But that was the fun of our relationship...we could argue about outside issues, but we always agreed about what was important.... 


The love of family 
Being a person someone can count on
Not taking life too seriously 
Doing a job correctly
Being firm but fair



                                                                                                  Here is to you John.  May your beer always be cold, your crabs always full, your martinis always dry, and your cards always aces.  We love you.   Your Outlaw Son-In-Law.

     

Good Neighbors

You don't have to watch much TV, or surf the internet for very long to see how poorly many people treat each other.  It's a sad shame to see what we are doing to ourselves.  

It doesn't have to be this way.

We have great neighbors.  Some have kids who come over and fill our backyard with the sound of laughter.  Others pay me with Jack Daniels for clearing snow off of their driveway. Others have pizza with us just to hang out.  We have school teachers, police officers, and nurses.

Our next door neighbors have become especially good friends.  Because we watched the famous Tessa Bear when they went away, they let us inherit their wooden outdoor play set. All we had to do was move it from their yard to ours.  Easier said than done since the thing weighs about 600 pounds.  Every time we worked on bringing parts of it over, they came out and lent us a hand.  Before long there are dogs running around, kids running around, and lots of laughing and kidding around.

Tonight was no exception.  At one point the adults were pondering the next mechanical engineering move, while the kids swam and jumped on the trampoline.  Another neighbor came to see what was going on and soon he was sucked into joining the brain trust. Eventually we got it moved over, and nobody lost any body parts.  

No more than an hour later, they called over to us needing some fans because they got water in the basement from the air conditioner unit.  We gathered some up and ran them over to them right away.  

As I walked back to the house it was now dark, and I soaked in the quiet.  In a way I could still hear the echos from the kids.  It was comforting to know that these people are all right around us, ready to share a laugh, or to help when called upon.  

I stopped for just a moment and pondered what the world would be like if everyone treated each other this way.  Imagine the comfort of knowing that people around you had your best interest at heart.  Imagine if kids just gathered, like being drawn together by nature.  Imagine if you could laugh together, and sometimes cry together because you understand each other.  Imagine if you felt safe and accepted for who you are.

Somehow, some way, we have to be better "neighbors" to one another in this world.  We have to return to a society that believes life is much better when everyone works together. 

Be well and God bless.    Tom