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
Wednesday, May 31, 2017
You Can't
You would not be born
You're just too ill
You proved them wrong
And are healthy still
You can't lift your head
Or learn to talk
You proved them wrong
And enjoy the walk
School's not possible
You can't learn
You proved them wrong
A diploma you'd earn
You can't effect the world
What can you do?
You proved them wrong
Thousands follow you
You can't move away
You need us all
You proved them wrong
You're standing tall
You can do anything
That you decide
We're always here
Right by your side
Tyler....we are proud of every accomplishment. For a little boy who would never make it, to now a young man who spreads love and joy to many. We love you.
Dad
You're just too ill
You proved them wrong
And are healthy still
You can't lift your head
Or learn to talk
You proved them wrong
And enjoy the walk
School's not possible
You can't learn
You proved them wrong
A diploma you'd earn
You can't effect the world
What can you do?
You proved them wrong
Thousands follow you
You can't move away
You need us all
You proved them wrong
You're standing tall
You can do anything
That you decide
We're always here
Right by your side
Tyler....we are proud of every accomplishment. For a little boy who would never make it, to now a young man who spreads love and joy to many. We love you.
Dad
My Toughest Day
Good afternoon!
There has never been a question posed to me that I wouldn't or couldn't try to offer an answer too. The one question that made me think twice, was how it felt the day we took Tyler to his residential home. What was that day like?
One reason we love Tyler's home agency is that they know how to handle such a difficult transition. We had discussed beforehand how to make the move as comfortable as possible for Tyler. There was no denying he would be completely freaked out, so our job was to work through it with him. We can't explain things like this to Tyler, so we had to plan things as though it would be a complete shock to him.
Our first strategy was to have Tyler meet the caregivers who would be with him at the beginning. About a week prior to his move, the staff would make visits and get to know him. We would also sit and discuss his joy and fears, so they got a good sense of what made him tick. Perhaps he was able to begin a comfort level with them that would carry over to the new house.
The morning of his move was one of the most difficult of my life. For him, it was just another day headed over to his day program. I remember him having a pretty good morning and being happy to do his normal thing. I looked at him knowing that his life was about to turn upside down. I couldn't decide whether I was leading him to better things, or leading him to the wolves. The urge to stop the whole process was very real. I knew that while this might ease the guilt I felt, it wouldn't be what was best for Tyler. Tyler needed me to be strong for both of us, and stick with the plan.
During the day, we went to Tyler's new house and got his room situated. We wanted for him to be surrounded with things that were familiar and comfortable. It was like being in a fog. I was going through the motions and thinking about the task at hand, all the while just telling myself why this was the right thing to do.
We picked him up from his day program. Tyler thought he was heading home as usual, and we knew he was basically starting a brand knew life. I was picturing the whole situation imploding into a ball of flames. I wanted to be optimistic, but my experience with Tyler had warned me otherwise.
When we arrived it didn't take long before he smelled trouble. We sat him at the dining room table with a coloring book and started to get the staff members around him. They had 3 or 4 people ready to handle whatever was about to hit. The only thing left for us to do was say "goodbye" and get out of the way of progress. I gave him a hug and a kiss, and headed for the door.
The remainder of the day and that night I waited for the phone to ring. "Come back and get him" they would say. Or somebody would be at the ER from kicks to the shin. Worse yet he may have torn the house down to the bare studs. I pretended to do other things, but my anxiety level was off the charts. I was glad the phone wasn't ringing, and at the same time I couldn't bear the silence. I knew how much pain he would be in, and how lost he was feeling. We had placed him in this situation, the very people who vowed to protect him. The phone never rang. Yes, he kicked, he threw things, and he was emotionally lost, but they all made it through the first day.....and the next....and the next.
I look back now and I realize how important it was for us to stick by the plan and trust what everyone was doing for him. If we would have given in to the emotions of the moment, it would have done him a great injustice. We are thankful every day that we were strong enough to remember what was best for him.
Be well and God bless. Tom
There has never been a question posed to me that I wouldn't or couldn't try to offer an answer too. The one question that made me think twice, was how it felt the day we took Tyler to his residential home. What was that day like?
One reason we love Tyler's home agency is that they know how to handle such a difficult transition. We had discussed beforehand how to make the move as comfortable as possible for Tyler. There was no denying he would be completely freaked out, so our job was to work through it with him. We can't explain things like this to Tyler, so we had to plan things as though it would be a complete shock to him.
Our first strategy was to have Tyler meet the caregivers who would be with him at the beginning. About a week prior to his move, the staff would make visits and get to know him. We would also sit and discuss his joy and fears, so they got a good sense of what made him tick. Perhaps he was able to begin a comfort level with them that would carry over to the new house.
The morning of his move was one of the most difficult of my life. For him, it was just another day headed over to his day program. I remember him having a pretty good morning and being happy to do his normal thing. I looked at him knowing that his life was about to turn upside down. I couldn't decide whether I was leading him to better things, or leading him to the wolves. The urge to stop the whole process was very real. I knew that while this might ease the guilt I felt, it wouldn't be what was best for Tyler. Tyler needed me to be strong for both of us, and stick with the plan.
During the day, we went to Tyler's new house and got his room situated. We wanted for him to be surrounded with things that were familiar and comfortable. It was like being in a fog. I was going through the motions and thinking about the task at hand, all the while just telling myself why this was the right thing to do.
We picked him up from his day program. Tyler thought he was heading home as usual, and we knew he was basically starting a brand knew life. I was picturing the whole situation imploding into a ball of flames. I wanted to be optimistic, but my experience with Tyler had warned me otherwise.
When we arrived it didn't take long before he smelled trouble. We sat him at the dining room table with a coloring book and started to get the staff members around him. They had 3 or 4 people ready to handle whatever was about to hit. The only thing left for us to do was say "goodbye" and get out of the way of progress. I gave him a hug and a kiss, and headed for the door.
The remainder of the day and that night I waited for the phone to ring. "Come back and get him" they would say. Or somebody would be at the ER from kicks to the shin. Worse yet he may have torn the house down to the bare studs. I pretended to do other things, but my anxiety level was off the charts. I was glad the phone wasn't ringing, and at the same time I couldn't bear the silence. I knew how much pain he would be in, and how lost he was feeling. We had placed him in this situation, the very people who vowed to protect him. The phone never rang. Yes, he kicked, he threw things, and he was emotionally lost, but they all made it through the first day.....and the next....and the next.
I look back now and I realize how important it was for us to stick by the plan and trust what everyone was doing for him. If we would have given in to the emotions of the moment, it would have done him a great injustice. We are thankful every day that we were strong enough to remember what was best for him.
Be well and God bless. Tom
Monday, May 29, 2017
Memorial Day
Today we pay our respects to those men and women who gave the ultimate sacrifice for our country. These folks laid down their lives so that we, and others, could enjoy a world free from oppression. They ensured our freedom to live as we wish, love as we wish, and worship as we wish.
Today, we will gather with my wife's side of the family, with heavier hearts. The patriarch of the family, John, will not be with us as he has been hospitalized with the effects of various illnesses. It appears that his body is growing tired and weak, which is also causing his mind to slide into confusion at times.
I've known John as a "Grandpa" longer than my own grandparents. He helped me with various projects at our old house. I especially remember him helping me lay a brick sidewalk around the back. While patience has not been his greatest virtue, being there for his family has been. Our favorite activity has been the quest for the perfect martini. Or perhaps arguing about politics. Or maybe trying to bluff each other out of 10 pennies while playing poker.
John is a throwback. He is a rare commodity in this world. He grew up during times that were lean and tough, times where men were required to put emotion aside in order to concentrate on being the provider, and chief officer of the household. And yet as he got older he has embraced a different role. It may have started with his time with a very young Tyler. He accepted Tyler for who he was and reached out to him. He tried to help Tyler be as "normal" as possible, while enjoying him for who he was. He laughed and lovingly poked at Tyler's crazy habits, which helped Tyler accept himself. I think they learned more from each other than either will ever truly know.
Its not easy for me, or any of us, to see him change. It appears as though he is on a steady decline that will require him to be cared for in a nursing home setting. Our hope now is to make him comfortable and functional enough to enjoy visits from his family. The man, who I respect deeply, deserves that and nothing less. He has earned it in spades.
So as we pay our tribute today to those who made it possible for us to freely gather as a family, we also pay tribute to the man who defines our family. We love you John.
Today, we will gather with my wife's side of the family, with heavier hearts. The patriarch of the family, John, will not be with us as he has been hospitalized with the effects of various illnesses. It appears that his body is growing tired and weak, which is also causing his mind to slide into confusion at times.
I've known John as a "Grandpa" longer than my own grandparents. He helped me with various projects at our old house. I especially remember him helping me lay a brick sidewalk around the back. While patience has not been his greatest virtue, being there for his family has been. Our favorite activity has been the quest for the perfect martini. Or perhaps arguing about politics. Or maybe trying to bluff each other out of 10 pennies while playing poker.
John is a throwback. He is a rare commodity in this world. He grew up during times that were lean and tough, times where men were required to put emotion aside in order to concentrate on being the provider, and chief officer of the household. And yet as he got older he has embraced a different role. It may have started with his time with a very young Tyler. He accepted Tyler for who he was and reached out to him. He tried to help Tyler be as "normal" as possible, while enjoying him for who he was. He laughed and lovingly poked at Tyler's crazy habits, which helped Tyler accept himself. I think they learned more from each other than either will ever truly know.
Its not easy for me, or any of us, to see him change. It appears as though he is on a steady decline that will require him to be cared for in a nursing home setting. Our hope now is to make him comfortable and functional enough to enjoy visits from his family. The man, who I respect deeply, deserves that and nothing less. He has earned it in spades.
So as we pay our tribute today to those who made it possible for us to freely gather as a family, we also pay tribute to the man who defines our family. We love you John.
Monday, May 22, 2017
Routine versus Rut
Good evening! Quick update on Mr. Tyler. No news is good news. That's it!
Seriously, it does actually work that way with Tyler. When he rolls along through his routine each day, with little perks thrown in like pizza or Mexican food, things are normally pretty good. He likes things nice and predictable and cozy.
In caregiving, there is a very thin line between maintaining a comfortable routine, and getting into a rut. It's not unusual to find yourself weaving back and forth on that line depending on the current events.
There is no question I had found myself in a rut quite frequently. I told myself that it was the cost of maintaining a routine, but deep down I knew better. And when I was in a rut, Tyler was in the same rut.
We have to fight the urge to cross the line from routine to rut. Tyler and I liked to walk in the park every day, that was a great routine. We walked exactly the same paths every day, that is a rut. Tyler would have enjoyed the walk no matter what direction or paths we took, so there was no good reason to repeat the same thing over and over. Even small changes of scenery and activity can be stimulating to the mind. One day we walked in the park and I decided to pose Tyler on various benches, beside trees, and sitting on rocks. Some of the pictures turned out pretty neat, and he was receptive to posing, at least for a little while. It turned out to be one of our more memorable walks.
Going to the beach was out of Tyler's routine, however we found a nice condo we were able to use for several trips, and he actually recognized where he was. This made an easy transition for him when we arrived. After about 4 days he started showing signs he was ready to get back to his normal routine, but those 4 days gave us all a powerful break from our rut.
I think the best lesson here is to look at the routines not as a thick black line that must be walked like a balance beam, but rather like a broad path in the woods. Its perfectly ok to use the whole path. Its also perfectly ok to look around and enjoy some of the scenery while you do it. And while we are at it, we should know when the time is right to step off the path just a little, or even try another path. ADDING to the familiar introduces variety.
No matter how much any of us loves our routine....variety is still necessary to enjoy our lives.
Be well and God bless. Tom
Seriously, it does actually work that way with Tyler. When he rolls along through his routine each day, with little perks thrown in like pizza or Mexican food, things are normally pretty good. He likes things nice and predictable and cozy.
In caregiving, there is a very thin line between maintaining a comfortable routine, and getting into a rut. It's not unusual to find yourself weaving back and forth on that line depending on the current events.
There is no question I had found myself in a rut quite frequently. I told myself that it was the cost of maintaining a routine, but deep down I knew better. And when I was in a rut, Tyler was in the same rut.
We have to fight the urge to cross the line from routine to rut. Tyler and I liked to walk in the park every day, that was a great routine. We walked exactly the same paths every day, that is a rut. Tyler would have enjoyed the walk no matter what direction or paths we took, so there was no good reason to repeat the same thing over and over. Even small changes of scenery and activity can be stimulating to the mind. One day we walked in the park and I decided to pose Tyler on various benches, beside trees, and sitting on rocks. Some of the pictures turned out pretty neat, and he was receptive to posing, at least for a little while. It turned out to be one of our more memorable walks.
Going to the beach was out of Tyler's routine, however we found a nice condo we were able to use for several trips, and he actually recognized where he was. This made an easy transition for him when we arrived. After about 4 days he started showing signs he was ready to get back to his normal routine, but those 4 days gave us all a powerful break from our rut.
I think the best lesson here is to look at the routines not as a thick black line that must be walked like a balance beam, but rather like a broad path in the woods. Its perfectly ok to use the whole path. Its also perfectly ok to look around and enjoy some of the scenery while you do it. And while we are at it, we should know when the time is right to step off the path just a little, or even try another path. ADDING to the familiar introduces variety.
No matter how much any of us loves our routine....variety is still necessary to enjoy our lives.
Be well and God bless. Tom
Wednesday, May 17, 2017
50,000 Views
I'm humbled to announce that the blog has reached 50,000 views.
This blog has been an incredible and amazing journey thus far. It had really started as a way for me to process so many things in my own mind - like a therapy of sorts. There are all of these experiences, from wonderful, to heartbreaking, that play in my mind like a set of short movies. They all circulate in my mind as though they are looking for a place to be neatly filed away. By writing about them it's a way for me to begin to do that.
Writing, for me is like a sanctuary, much like spending time at the ocean. When I sit at the beach I can blend into my surroundings. In a way it allows me to become small and quiet. That quiet puts me in a place where I can think and feel in a peaceful way.
Maybe this explains one of the greatest benefits I receive from doing this. It helps me find an inner peace that otherwise I would be searching for.
I'd also like to believe that a reader out there is encouraged by what I write. Perhaps it is as simple as someone seeing a story and seeing themselves in it. I would be honored to think that my words could change the way the reader sees themselves, or they way they see their situation. Maybe this blog has been a light where someone needed it. Maybe it brought hope to someone who, like I had, was losing faith that hope was still alive.
I'm thankful for every single view. And I look forward to where this path will continue to go. I'm enjoying letting things happen and watching where it leads.
Thank you so very much. Tom
This blog has been an incredible and amazing journey thus far. It had really started as a way for me to process so many things in my own mind - like a therapy of sorts. There are all of these experiences, from wonderful, to heartbreaking, that play in my mind like a set of short movies. They all circulate in my mind as though they are looking for a place to be neatly filed away. By writing about them it's a way for me to begin to do that.
Writing, for me is like a sanctuary, much like spending time at the ocean. When I sit at the beach I can blend into my surroundings. In a way it allows me to become small and quiet. That quiet puts me in a place where I can think and feel in a peaceful way.
Maybe this explains one of the greatest benefits I receive from doing this. It helps me find an inner peace that otherwise I would be searching for.
I'd also like to believe that a reader out there is encouraged by what I write. Perhaps it is as simple as someone seeing a story and seeing themselves in it. I would be honored to think that my words could change the way the reader sees themselves, or they way they see their situation. Maybe this blog has been a light where someone needed it. Maybe it brought hope to someone who, like I had, was losing faith that hope was still alive.
I'm thankful for every single view. And I look forward to where this path will continue to go. I'm enjoying letting things happen and watching where it leads.
Thank you so very much. Tom
Monday, May 15, 2017
Mr. Perfect
In case you are not a wrestling fan, there used to be a wrestler dubbed "Mr. Perfect". His name was actually Curt Hennig.
Curt was an amazingly talented individual. He was revered by his peers and fans alike. His gimmick (or story) was that no matter what he did, we could do it to perfection. He could bowl strikes, hit a hole in one, and beat every wrestler.
Ironically, he was an extremely flawed individual. He died 15 years ago at the age of 44 from cocaine, steroids, and pain killers. His need to be perfect, to never lose, to not make a mistake was his undoing.
How many of us as caregivers, or even typical parents, hold ourselves to such lofty standards? How many of us are actually killing ourselves in that quest to never let anyone down, or to be in every right place in every right time?
I remember once in Disney World where I wheeled Tyler up to the Pirates of the Caribbean ride, and asked for the handicap entrance for Tyler. I was told there was no wait so if he could transfer into a boat (which he could), we would be able to walk right on without using a handicap entrance. I decided to trust her, took him out of his chair, and walked him down the queue line. To our dismay there was about a 10 minute wait ahead of us at the bottom. With an autistic child who HATES lines, this might as well be 10 hours. I immediately panicked. We tried to surround him and take his mind off of the fact that we had stopped moving. This did not work one little bit and he figured out a way to give a kick to the man in front of us. I quickly walked him back up the queue line, past anyone coming the other way, and right back to the safety of his chair.
I was FURIOUS. Not at him, and not even at the ride attendant, but at myself. I had put him, and the other fellow, in harms way by not doing my job. I put him in a position that I should not have put him in. The situation demanded I be Mr. Perfect and I made a mistake.
Trust me, I have an entire highlight reel of mistakes I can play in my own head of the times I wasn't perfect.
News Flash! We aren't perfect. Say that again....we are not perfect.
If you are like me in this way (and heaven help you if you are) we have to learn to somehow let ourselves off the hook. We have to try and tell ourselves that we did the best we could with what we had in front of us at that very moment. Somehow we have to learn to live with the times it didn't work out the way we thought it would. We have to strive to always do what's right but recognize that are human just like everyone else.
Be well and God bless. Tom
Ironically, he was an extremely flawed individual. He died 15 years ago at the age of 44 from cocaine, steroids, and pain killers. His need to be perfect, to never lose, to not make a mistake was his undoing.
How many of us as caregivers, or even typical parents, hold ourselves to such lofty standards? How many of us are actually killing ourselves in that quest to never let anyone down, or to be in every right place in every right time?
I remember once in Disney World where I wheeled Tyler up to the Pirates of the Caribbean ride, and asked for the handicap entrance for Tyler. I was told there was no wait so if he could transfer into a boat (which he could), we would be able to walk right on without using a handicap entrance. I decided to trust her, took him out of his chair, and walked him down the queue line. To our dismay there was about a 10 minute wait ahead of us at the bottom. With an autistic child who HATES lines, this might as well be 10 hours. I immediately panicked. We tried to surround him and take his mind off of the fact that we had stopped moving. This did not work one little bit and he figured out a way to give a kick to the man in front of us. I quickly walked him back up the queue line, past anyone coming the other way, and right back to the safety of his chair.
I was FURIOUS. Not at him, and not even at the ride attendant, but at myself. I had put him, and the other fellow, in harms way by not doing my job. I put him in a position that I should not have put him in. The situation demanded I be Mr. Perfect and I made a mistake.
Trust me, I have an entire highlight reel of mistakes I can play in my own head of the times I wasn't perfect.
News Flash! We aren't perfect. Say that again....we are not perfect.
If you are like me in this way (and heaven help you if you are) we have to learn to somehow let ourselves off the hook. We have to try and tell ourselves that we did the best we could with what we had in front of us at that very moment. Somehow we have to learn to live with the times it didn't work out the way we thought it would. We have to strive to always do what's right but recognize that are human just like everyone else.
Be well and God bless. Tom
Sunday, May 14, 2017
Moms - The Special Needs Version
Good morning! And happy Mother's Day.
Mom's are a very special group of people that are like absolutely no other. A mom knows how to surround their children with the love and nurturing that stays with their children no matter where they go. Mom's fill many, many roles in a single day, from earner, to chef, to house cleaner, Tudor, and driver. Their hard work may be appreciated, but probably never quite as much as it should be.
My wife is a special needs mom. I believe there should be a special place in heaven for special needs moms like her. Or at least a special bathroom in heaven for them. One where they can soak in a warm bath, with a TV on the wall, and a robot to rub their feet. There would even be an optional wine dispenser on the shower wall. It's the least we can do!
Robin has been everything that a mom should be. No matter what the situation was with Tyler, she never stopped loving him. She would never think of it. She put Tyler's needs, and the needs of her family, over all other things. She endured physical and emotional pain that tested her, but she never broke.
Now she is mom to our typical daughter. She is a model for her on grace, humility, and beauty. The challenges are certainly different with our daughter, and at times just as frustrating, but her dedication never stops. This time around she also gets to experience the joys of watching her child grow and experience normal things. Samantha gave her a special present this morning, a cup of dirt. There was also supposed to be a flower, but someone forgot to tell the flower apparently. After presenting the almost-flower, Sam gently put her arms around Robin and said "I love you Mommy". It was sincere and straight from her heart. It was every bit as beautiful as any flower could hope to be.
I have one gift wish for Robin...one that she has rightfully earned. Once we have left this earth, she deserves to spend eternity with her children. I imagine her spending her time with Tyler, walking and talking, without the bodily restrictions of this world. Tyler will tell her how lucky he was to have her, and how glad he is to walk by her side. The physical and emotional pain would dissolve and disappear into dust.
I sincerely wish all of the moms out there a very happy Mother's Day. I especially dedicate this post to those moms who have special needs children. Your tireless love, hard work, and steadfast dedication is not going unnoticed. Your special pampering room awaits.
Be well and God bless. Tom
Mom's are a very special group of people that are like absolutely no other. A mom knows how to surround their children with the love and nurturing that stays with their children no matter where they go. Mom's fill many, many roles in a single day, from earner, to chef, to house cleaner, Tudor, and driver. Their hard work may be appreciated, but probably never quite as much as it should be.
My wife is a special needs mom. I believe there should be a special place in heaven for special needs moms like her. Or at least a special bathroom in heaven for them. One where they can soak in a warm bath, with a TV on the wall, and a robot to rub their feet. There would even be an optional wine dispenser on the shower wall. It's the least we can do!
Robin has been everything that a mom should be. No matter what the situation was with Tyler, she never stopped loving him. She would never think of it. She put Tyler's needs, and the needs of her family, over all other things. She endured physical and emotional pain that tested her, but she never broke.
Now she is mom to our typical daughter. She is a model for her on grace, humility, and beauty. The challenges are certainly different with our daughter, and at times just as frustrating, but her dedication never stops. This time around she also gets to experience the joys of watching her child grow and experience normal things. Samantha gave her a special present this morning, a cup of dirt. There was also supposed to be a flower, but someone forgot to tell the flower apparently. After presenting the almost-flower, Sam gently put her arms around Robin and said "I love you Mommy". It was sincere and straight from her heart. It was every bit as beautiful as any flower could hope to be.
I have one gift wish for Robin...one that she has rightfully earned. Once we have left this earth, she deserves to spend eternity with her children. I imagine her spending her time with Tyler, walking and talking, without the bodily restrictions of this world. Tyler will tell her how lucky he was to have her, and how glad he is to walk by her side. The physical and emotional pain would dissolve and disappear into dust. 
Be well and God bless. Tom
Friday, May 12, 2017
Logo Shirts
Good Afternoon!
From my last post I talked about a crazy idea that I had to design a few articles of clothing for our special needs children to wear, that may help the world better understand and identify with them. I've been working on doing just that.
In many ways we are taught that labels are a bad thing. But I also believe that there are times that labels are helpful when it identifies a person's diagnosis. I would rather that a person understand Tyler's correct diagnosis than to be left judging for themselves.
My current project is to design a small line of t-shirts and sweatshirts for kids, that will give a tongue-in-cheek way for people to understand the non-typical behavior they may be seeing. Hopefully it would prompt others to better understand the disorders, or even get curious and do more research for themselves. There are 2 separate types of t-shirts available in various sizes. You can click any of the links to the right to see them better or to order:
www.cafepress.com/cp/customize/product2.aspx?number=47307977
www.cafepress.com/cp/customize/product2.aspx?number=47307816
And a sweatshirt available in various sizes:
http://www.cafepress.com/cp/customize/product2.aspx?number=47306501
I am going to work on making a few more slogans. My hope is that this will help bring even more awareness and compassion for our children who so desperately need for the world to better understand them.
Be well and God Bless. Tom
From my last post I talked about a crazy idea that I had to design a few articles of clothing for our special needs children to wear, that may help the world better understand and identify with them. I've been working on doing just that.
In many ways we are taught that labels are a bad thing. But I also believe that there are times that labels are helpful when it identifies a person's diagnosis. I would rather that a person understand Tyler's correct diagnosis than to be left judging for themselves.
My current project is to design a small line of t-shirts and sweatshirts for kids, that will give a tongue-in-cheek way for people to understand the non-typical behavior they may be seeing. Hopefully it would prompt others to better understand the disorders, or even get curious and do more research for themselves. There are 2 separate types of t-shirts available in various sizes. You can click any of the links to the right to see them better or to order:
www.cafepress.com/cp/customize/product2.aspx?number=47307977
www.cafepress.com/cp/customize/product2.aspx?number=47307816
And a sweatshirt available in various sizes:
http://www.cafepress.com/cp/customize/product2.aspx?number=47306501
I am going to work on making a few more slogans. My hope is that this will help bring even more awareness and compassion for our children who so desperately need for the world to better understand them.
Be well and God Bless. Tom
Thursday, May 11, 2017
He Looks So Normal!
My son is a very handsome young man. He was born with a great smile and captivating blue eyes. He has always been popular with the nurses for his dashing good looks. I mean, how can you not love this face!
Would you believe that this has been a disadvantage to him sometimes?
Tyler's disabilities are severe and profound. He generally has the cognitive ability equal to a child under the age of 5. When Samantha was about 18 months old we noticed that most of her skills had surpassed his.
A frustration for me, and I'm sure the case for many people who care for severely disabled individuals, is that when they appear to look "normal", they are more easily misunderstood. Tyler looks quite typical and can be animated in his facial expressions, which has caused people to try and treat him as though he understands everything around him.
It is human nature for us to look at a person and make certain judgments and assumptions based on physical appearance. I would be lying if I said I wasn't guilty of this myself. Most of the time we can tuck this first impression away and wait to see if further input proves us right or wrong.
But in Tyler's case, the first impression may be an aggressive act, a stumble, or speaking abruptly and loudly. Because he looks much more cognitively aware than what he really is, it leads people to think that he is intentionally being disruptive. They can falsely assume he is able to control himself but chooses not to.
At one point I thought about designing a t-shirt for Tyler that would read "It's not me - it's my autism". This is for comedic effect obviously, but I think it addresses a serious issue. Would it help a person who does not recognize the behaviors of the spectrum to not be so quick to rush to judgment. Could it actually promote understanding with the general public?
Actually, I think I will pitch my idea and see if I can get this done. Heck, you could make one for many diagnosis, especially those that are so hard to recognize. Wish me luck!
Be well and God bless. Tom
Would you believe that this has been a disadvantage to him sometimes? Tyler's disabilities are severe and profound. He generally has the cognitive ability equal to a child under the age of 5. When Samantha was about 18 months old we noticed that most of her skills had surpassed his.
A frustration for me, and I'm sure the case for many people who care for severely disabled individuals, is that when they appear to look "normal", they are more easily misunderstood. Tyler looks quite typical and can be animated in his facial expressions, which has caused people to try and treat him as though he understands everything around him.
It is human nature for us to look at a person and make certain judgments and assumptions based on physical appearance. I would be lying if I said I wasn't guilty of this myself. Most of the time we can tuck this first impression away and wait to see if further input proves us right or wrong.But in Tyler's case, the first impression may be an aggressive act, a stumble, or speaking abruptly and loudly. Because he looks much more cognitively aware than what he really is, it leads people to think that he is intentionally being disruptive. They can falsely assume he is able to control himself but chooses not to.
At one point I thought about designing a t-shirt for Tyler that would read "It's not me - it's my autism". This is for comedic effect obviously, but I think it addresses a serious issue. Would it help a person who does not recognize the behaviors of the spectrum to not be so quick to rush to judgment. Could it actually promote understanding with the general public?
Actually, I think I will pitch my idea and see if I can get this done. Heck, you could make one for many diagnosis, especially those that are so hard to recognize. Wish me luck!
Be well and God bless. Tom
Tuesday, May 9, 2017
Tessa-Bear
I remember a line in Forrest Gump that goes something like: "Dying is just a part of living. I sure wish it wasn't". Challenges and losses are important parts of our journey. Sometimes we forget to be thankful for the setbacks.
Its a hard concept to come to terms with...we should be thankful for our losses. Why should we be thankful for losses that cause us pain?
This is my friend Tessa (Tessa is the one on the left). We call her Tessa-Bear because she is about as big as a young black bear. When you first see her she can be a little intimidating. In about 30 seconds you figure out that the biggest things about her are her heart and her personality. As was the case with her human family, we all became fast friends. Tessa is a gentle soul who I have had the privilege of watching after, and helping to spoil, while the family is away for activities.
Sadly, it seems that Tessa is nearing the end of her own journey. She has become older and sicker, she has stopped eating and drinking, and is content to just make herself comfortable. Upon knowing that she is feeling so ill, I visited with her this morning. She was lounging in the grass. I called to her as I walked up, but she didn't greet me as she normally would. I knelt down in front of her and she lifted her head and flipped her tail a few times. I asked my wife to come and visit her too. Tessa is a wonderful old friend, and as she crosses the rainbow bridge today, we want her to know she was special to us.
It hurts to lose Tessa. It hurt terribly when we lost Abby. Just as it hurts when we lose anyone or anything that we love. It makes us question "why?". Why do we have to experience the pain of things that go wrong, and the things that we lose?
I believe there is great purpose in our losses. Wisdom can only be gained through experiences, and those experiences must include painful ones. We can't learn to appreciate the loves we have without remembering the loves we've lost. We would never recognize the wonderful gifts in our lives if everything were easy. Without loss we cannot become stronger and more empathetic creatures ourselves.
Our hearts will be heavy as we miss such a noble creature, but we must remember the love she so generously gave to the family, neighbors, and especially the kids who enjoyed loving her back. We are the ones who were blessed to know her.
Goodbye my old friend.
Its a hard concept to come to terms with...we should be thankful for our losses. Why should we be thankful for losses that cause us pain?
This is my friend Tessa (Tessa is the one on the left). We call her Tessa-Bear because she is about as big as a young black bear. When you first see her she can be a little intimidating. In about 30 seconds you figure out that the biggest things about her are her heart and her personality. As was the case with her human family, we all became fast friends. Tessa is a gentle soul who I have had the privilege of watching after, and helping to spoil, while the family is away for activities. Sadly, it seems that Tessa is nearing the end of her own journey. She has become older and sicker, she has stopped eating and drinking, and is content to just make herself comfortable. Upon knowing that she is feeling so ill, I visited with her this morning. She was lounging in the grass. I called to her as I walked up, but she didn't greet me as she normally would. I knelt down in front of her and she lifted her head and flipped her tail a few times. I asked my wife to come and visit her too. Tessa is a wonderful old friend, and as she crosses the rainbow bridge today, we want her to know she was special to us.
It hurts to lose Tessa. It hurt terribly when we lost Abby. Just as it hurts when we lose anyone or anything that we love. It makes us question "why?". Why do we have to experience the pain of things that go wrong, and the things that we lose?
I believe there is great purpose in our losses. Wisdom can only be gained through experiences, and those experiences must include painful ones. We can't learn to appreciate the loves we have without remembering the loves we've lost. We would never recognize the wonderful gifts in our lives if everything were easy. Without loss we cannot become stronger and more empathetic creatures ourselves.
Our hearts will be heavy as we miss such a noble creature, but we must remember the love she so generously gave to the family, neighbors, and especially the kids who enjoyed loving her back. We are the ones who were blessed to know her.
Goodbye my old friend.
Monday, May 8, 2017
Take a Break!
Many, many people are currently caregivers for someone. It might be a special needs child, but it could also be an elderly parent, a sick relative, or a number of other possibilities. Those who are not presently in the caregiver role, may well find themselves in that role somewhere down the road as we age alongside of those around us.
Caregiving is a journey that requires a person to immerse themselves into the care of someone else, often at the cost of properly caring for ourselves. It can mean sleepless nights, poor eating habits, stress, anxiety, and a willingness to ignore physical symptoms.
Simply put, a caregiver will age themselves at a faster rate than a "typical" body will. How many times have we heard the stories about a spouse caring for their husband/wife for years, and once that person passes away, the spouse gets sick and dies very quickly after? This is certainly no coincidence.
The question for today is: How does a caregiver protect themselves from deteriorating?
1. Know when to enlist help. I placed this number one because I think its a huge caregiver issue. We want to believe we can do everything, and we refuse to acknowledge when we are in over our heads. Nothing will burn a person out faster than trying to provide care that is outside of their ability level. Find out what is available and use it. Any help, big or small, will make a world of difference
2. Keep your own appointments. Your body has needs, and it will not rationalize the needs of the outside world. Maintain your dental, eye, physical, and mental heath at all costs. Your special person cannot benefit from your help if you are physically unable to do it
3. Take breaks. Tyler required my presence around him nearly every waking hour, so I had to be creative in giving myself breaks. After he went to bed for the night I would have a cold beer and sit and read a book. In the summer I might float around in the pool with some music playing. The cliche of "me time" is very real in the caregiver world. You HAVE to find ways of grabbing that time and refreshing some of your battery power.
4. Socialize. Isolation is a dangerous and silent killer of caregivers. Feeling alone in your battle will easily turn into depression, which will help magnify the impact on the mind and body. There is no substitute for human interaction and its positive effects on the human spirit. Have lunch with a friend weekly, a night out with friends, or anything else you can squeeze in.
5. Lean on your faith. Turn to your religion and your church for help. Churches will often reach out to those in need by making a meal, or visiting, or through prayer. Attend as often as you are able so you can feel the sense of community and healing around you. It is important to maintain the sense of purpose and hope as you continue your journey.
These are just 5 things that I feel can greatly preserve and protect a caregiver. We owe it to our loved ones to be strong and healthy, and we owe it to ourselves to be prepared for life outside of caregiving.
Be well and God bless. Tom
Caregiving is a journey that requires a person to immerse themselves into the care of someone else, often at the cost of properly caring for ourselves. It can mean sleepless nights, poor eating habits, stress, anxiety, and a willingness to ignore physical symptoms.
Simply put, a caregiver will age themselves at a faster rate than a "typical" body will. How many times have we heard the stories about a spouse caring for their husband/wife for years, and once that person passes away, the spouse gets sick and dies very quickly after? This is certainly no coincidence.
The question for today is: How does a caregiver protect themselves from deteriorating?
1. Know when to enlist help. I placed this number one because I think its a huge caregiver issue. We want to believe we can do everything, and we refuse to acknowledge when we are in over our heads. Nothing will burn a person out faster than trying to provide care that is outside of their ability level. Find out what is available and use it. Any help, big or small, will make a world of difference
2. Keep your own appointments. Your body has needs, and it will not rationalize the needs of the outside world. Maintain your dental, eye, physical, and mental heath at all costs. Your special person cannot benefit from your help if you are physically unable to do it
3. Take breaks. Tyler required my presence around him nearly every waking hour, so I had to be creative in giving myself breaks. After he went to bed for the night I would have a cold beer and sit and read a book. In the summer I might float around in the pool with some music playing. The cliche of "me time" is very real in the caregiver world. You HAVE to find ways of grabbing that time and refreshing some of your battery power.
4. Socialize. Isolation is a dangerous and silent killer of caregivers. Feeling alone in your battle will easily turn into depression, which will help magnify the impact on the mind and body. There is no substitute for human interaction and its positive effects on the human spirit. Have lunch with a friend weekly, a night out with friends, or anything else you can squeeze in.
5. Lean on your faith. Turn to your religion and your church for help. Churches will often reach out to those in need by making a meal, or visiting, or through prayer. Attend as often as you are able so you can feel the sense of community and healing around you. It is important to maintain the sense of purpose and hope as you continue your journey.
These are just 5 things that I feel can greatly preserve and protect a caregiver. We owe it to our loved ones to be strong and healthy, and we owe it to ourselves to be prepared for life outside of caregiving.
Be well and God bless. Tom
Sunday, May 7, 2017
Tyler is My "Home"
I've stood on both sides of Niagra Falls
Caught a Red Sox game at Fenway Park
Drove along the Pacific shoreline at sunset
Stood in the Gulf of Mexico in the dark
I've seen the great fair of Texas
And in Philly I watched the Boss
Stood on the spot where they shot Kennedy
In awe of the Golden Gate as I drove across
Watched a game in the stands of Wrigley Field
Another on the hallowed grounds of Notre Dame
Bowed my head for the graves at Arlington
Searched the Vietnam Wall for a relative's name
Toronto, St. Louis, and Colorado Springs
Tallahassee, Nashville, and San Francisco too
Many beautiful places in America
All with many things to see and do
Yet I would trade every place I've ever been
To spend some time wherever you may be
Your courage is taller than any mountain top
And your smile calms me like the sea
I know I'm home when I sit with you
And no matter where I have to roam
The only place for me is where you are
Because where you are is Home
Caught a Red Sox game at Fenway Park
Drove along the Pacific shoreline at sunset
Stood in the Gulf of Mexico in the dark
I've seen the great fair of Texas
And in Philly I watched the Boss
Stood on the spot where they shot Kennedy
In awe of the Golden Gate as I drove across
Watched a game in the stands of Wrigley Field
Another on the hallowed grounds of Notre Dame
Bowed my head for the graves at Arlington
Searched the Vietnam Wall for a relative's name
Toronto, St. Louis, and Colorado Springs
Tallahassee, Nashville, and San Francisco too
Many beautiful places in America
All with many things to see and do
Yet I would trade every place I've ever been
To spend some time wherever you may be
Your courage is taller than any mountain top
And your smile calms me like the sea
I know I'm home when I sit with you
And no matter where I have to roam
The only place for me is where you are
Because where you are is Home
Saturday, May 6, 2017
Tyler Hall of Fame - John and Carolyn
One of Tyler's earliest and most ardent advocates was his maternal Great-Grandparents, John and Carolyn. Much of his early development was thanks to their dedication to caring for his needs.
John and Carolyn were in their early 60's when Tyler was born. Having been successful in their business, they were both already retired. I saw them as a "young 60" however, as they were both very active. When Robin and I had to return to work, they were there to care for Tyler every day. Tyler also had therapy appointments during these years, and they were there for that too.
What made that time with him so special, was the incredible nurturing and emotional support he received from them. He learned from them, at a very early age, that he was the most important little boy in the world.
He also learned fun things from them, like how to dunk cookies into coffee. In fact, he learned how to eat anything and everything from being at their house. Carolyn is a very good cook, so good that apparently she didn't leave enough for future generations. My mother in-law mistakes ham broth for slushies, and my wife makes a beef roast that is as tender as a frozen hockey puck. I kid....
What strikes me the most about their ability to care for Tyler is that they came from a generation where this was certainly not the norm. For much of their lives, children with severe disabilities were placed in homes, or did not survive.
All John and Carolyn knew then, and still know now, is that a family protects its own. These were the instincts they used as their guiding light. They knew that by treating him with care, humility, compassion, and a tremendous sense of humor, that he would be the best he could be. Because of this, Tyler developed a sense of self that has made a tremendous difference in his life. They may not realize it, but this was perhaps one of the greatest gifts Tyler has ever received.
John and Carolyn: for your incredible love and dedication, you are everything that Team Tyler represents, and inducted into the Team Tyler Hall of Fame.
Be well and God bless. Tom
John and Carolyn were in their early 60's when Tyler was born. Having been successful in their business, they were both already retired. I saw them as a "young 60" however, as they were both very active. When Robin and I had to return to work, they were there to care for Tyler every day. Tyler also had therapy appointments during these years, and they were there for that too. What made that time with him so special, was the incredible nurturing and emotional support he received from them. He learned from them, at a very early age, that he was the most important little boy in the world.
He also learned fun things from them, like how to dunk cookies into coffee. In fact, he learned how to eat anything and everything from being at their house. Carolyn is a very good cook, so good that apparently she didn't leave enough for future generations. My mother in-law mistakes ham broth for slushies, and my wife makes a beef roast that is as tender as a frozen hockey puck. I kid....
What strikes me the most about their ability to care for Tyler is that they came from a generation where this was certainly not the norm. For much of their lives, children with severe disabilities were placed in homes, or did not survive.
All John and Carolyn knew then, and still know now, is that a family protects its own. These were the instincts they used as their guiding light. They knew that by treating him with care, humility, compassion, and a tremendous sense of humor, that he would be the best he could be. Because of this, Tyler developed a sense of self that has made a tremendous difference in his life. They may not realize it, but this was perhaps one of the greatest gifts Tyler has ever received.
John and Carolyn: for your incredible love and dedication, you are everything that Team Tyler represents, and inducted into the Team Tyler Hall of Fame.
Be well and God bless. Tom
Tuesday, May 2, 2017
Change The World
How often do we feel as though the world steamrolls along, while we grab on for dear life? We at times measure success as a day where we don't end up squashed beneath the big roller. As a special needs parent, I could barely control the functions of my own home, much less worry about anything going on with the outside world. I look back now and I wish I had known that it didn't have to be that way.
As I write these blogs I have noticed that spellcheck would sometimes disagree with my use of the word "caregiving". I get that annoying red line below the word. I know caregiving is a word, because we have done it! In fact, caregiving to me is the act of providing very specific and complex care for someone else. How could I be using it improperly?
I sent an e-mail to the good folks at Mirriam-Webster Dictionary and challenged the lack of definition of the word. After all, we cannot address things like caregiver fatigue unless we properly see caregiving for what it is. Caregiving is an activity that involves a high degree of love and dedication to provide physical, mental, and emotional support for another person. I feel it is almost a slight for this word to go so minimally undefined.
After a few e-mail exchanges I received this reply:
As I write these blogs I have noticed that spellcheck would sometimes disagree with my use of the word "caregiving". I get that annoying red line below the word. I know caregiving is a word, because we have done it! In fact, caregiving to me is the act of providing very specific and complex care for someone else. How could I be using it improperly?
I sent an e-mail to the good folks at Mirriam-Webster Dictionary and challenged the lack of definition of the word. After all, we cannot address things like caregiver fatigue unless we properly see caregiving for what it is. Caregiving is an activity that involves a high degree of love and dedication to provide physical, mental, and emotional support for another person. I feel it is almost a slight for this word to go so minimally undefined.
After a few e-mail exchanges I received this reply:
Hi Tom,
For the next dictionary update
later this year, I will be adding some quotations to the entry from our files
that I hope will make the entry more meaningful.
I do plan to send them some suggestions on what I believe the definition of caregiving should be. Whether they want my suggestions remains to be seen.
I learned something important through this experience. There is nothing in this world that cannot be changed, even by a single person writing a single e-mail. We should challenge the way we look at everything. If I can change the dictionary...what else can be changed? The truth is, there is no limit to what a person can do.
If we all find one way to change the world, big or small, and make it better, we can turn things around for ourselves, our children, and our children's children.
Be well and God bless. Tom
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