This afternoon I received a call from a very wonderfully lady who was asked by the church to call me and inform me that the blog has once again been suspended. The church is currently deciding whether or not to permanently disassociate itself from the blog. They will be meeting Tuesday night and will make this a point of discussion. The theme is essentially...do some of my blog posts cross the line of being "too political".
To be fair, there was a sentence in my post yesterday that did not correctly represent a point I was making, My point was how we often see church leaders stump for a candidate they believe align with the values of their church, and yet opposing views don't belong because they are too political. It's hypocritical. I was not referring to my own experience at OUR church, but I did not draw that distinction. I enjoy the current environment and the message being delivered and have no intention of leading anyone to believe otherwise. I've actually edited that post to reflect this distinction.
However, to deny that politics is not a part of special needs parenting would be to deny the existence of air. Politicians control the funding by which Tyler and all others like him rely on to live. Laws are made or not made which protect special needs individuals. And politicians are the first line of authority that people watch to find out where we stand in the world. So to say...no Tom you can't post anything political would be to deny that politics has any stake in the life that Tyler and I live.
This blog belongs to Tyler and his story. And I have maintained for years that sometimes that story will inspire, sometimes it will provoke thought, and sometimes it will challenge our thinking. But it will always be honest and true to who we are. It will deal with points of view, all points of view, and without apology.
Sadly, a group of people will decide whether two posts out of the hundreds written, is too politically sensitive for them to keep it linked to the website. Make no mistake, this is their choice to make. I suppose it will left to a vote to well meaning folks who do not understand the actual point of the blog itself. It's an expression of how I perceive the world around Tyler. The WHOLE WORLD. Not the world except for this subject or that subject. That how it has always been and that's how it will stay.
I'm going to focus on the 60,000 people who have read the blog across the world. The people who I've talked to in airports, neighborhoods, and by email who have said that because of the honesty and unapologetic things posted in the blog that it has helped them to cope with their own situation. I will continue to write for them. I will continue to write for me as my way of making sense of what goes on around us.
As for whatever discussions that happen around the blog, I don't want to be involved. I'm not going to justify a single word, nor should I be asked to. For years I've written from my heart and that's how it will stay.
Be Well and God Bless. Tom
Sunday, August 18, 2019
Saturday, August 17, 2019
The Day the Blog (almost) Died
Good Evening.
About a year ago, this blog almost died. I wrote an entry about the power of words. I pointed out that our leaders, leaders of all types, are responsible for setting an example for those who followed. Regardless of political alliances we all have a moral responsibility to be a moral compass for those who are appointing us to do so. I used Scott Wagner as an example. While running for Governor of Pennsylvania he threatened to stomp his opponent in the face with golf cleats. This is a fact. I openly wondered how we had come so far removed from the respect that should be shown by a public servant. I felt this to be important because the way we treat others is SO important to the special needs community. When empathy suffers, the special needs community suffers. When bullies win, the special needs community loses. Because I used a conservative candidate as an example, the blog, sponsored by the church, was suspended. I had to edit the entry or else face loss of sponsorship by the church. I was not permitted to be "political".
I find it interesting that we often see national church leaders that dont mind being political when it endorses conservative candidates, but will threaten its sponsorship of the blog when it threatens conservative values.
The problem that we face as special needs parents is that empathy is becoming more scarce by the day. Benefits are cut while needs increase. Our "leaders" are justifying racism and elitism while their followers are happy to get theirs while thumbing their noses at those less fortunate.
The painful truth is that when our society is failing, the special needs community suffers first and suffers worse. When we cut taxes for billionaires and cut funding for special needs children at the same time, we have lost our way.
We are a society that nearly cut funding for special Olympics and yet doesn't blink when a RB demands a 40 million dollar contract to play football. We celebrate an individual who publically makes fun of a handicapped journalist and ridicules an overweight supporter. We fly racist rebel flags without concern for the pain it causes others. We watch our babies get gunned down and argue over weapon rights. We turn away the poor. We justify selfishness and hate. These are facts.
Because our values are a direct reflection of how we treat our special needs community, I will never again be compelled to sensor myself.
We have to do better. We have to demand better. Forget political affiliation and start thinking of human affiliation. We must ask ourselves what will help our fellow man FIRST. Love has to come before all else. Compassion. Empathy. Giving, Community. Without those things we will surely die.
Join me in demanding better of ourselves and each other.
Be well and God bless. Tom
About a year ago, this blog almost died. I wrote an entry about the power of words. I pointed out that our leaders, leaders of all types, are responsible for setting an example for those who followed. Regardless of political alliances we all have a moral responsibility to be a moral compass for those who are appointing us to do so. I used Scott Wagner as an example. While running for Governor of Pennsylvania he threatened to stomp his opponent in the face with golf cleats. This is a fact. I openly wondered how we had come so far removed from the respect that should be shown by a public servant. I felt this to be important because the way we treat others is SO important to the special needs community. When empathy suffers, the special needs community suffers. When bullies win, the special needs community loses. Because I used a conservative candidate as an example, the blog, sponsored by the church, was suspended. I had to edit the entry or else face loss of sponsorship by the church. I was not permitted to be "political".
I find it interesting that we often see national church leaders that dont mind being political when it endorses conservative candidates, but will threaten its sponsorship of the blog when it threatens conservative values.
The problem that we face as special needs parents is that empathy is becoming more scarce by the day. Benefits are cut while needs increase. Our "leaders" are justifying racism and elitism while their followers are happy to get theirs while thumbing their noses at those less fortunate.
The painful truth is that when our society is failing, the special needs community suffers first and suffers worse. When we cut taxes for billionaires and cut funding for special needs children at the same time, we have lost our way.
We are a society that nearly cut funding for special Olympics and yet doesn't blink when a RB demands a 40 million dollar contract to play football. We celebrate an individual who publically makes fun of a handicapped journalist and ridicules an overweight supporter. We fly racist rebel flags without concern for the pain it causes others. We watch our babies get gunned down and argue over weapon rights. We turn away the poor. We justify selfishness and hate. These are facts.
Because our values are a direct reflection of how we treat our special needs community, I will never again be compelled to sensor myself.
We have to do better. We have to demand better. Forget political affiliation and start thinking of human affiliation. We must ask ourselves what will help our fellow man FIRST. Love has to come before all else. Compassion. Empathy. Giving, Community. Without those things we will surely die.
Join me in demanding better of ourselves and each other.
Be well and God bless. Tom
Wednesday, August 7, 2019
Deeper in the Weeds
Sometimes I consider doing a post and I wonder if I should. After all, it seems that lately Tyler has gotten deeper in the weeds with his state of mind and behavior. That brings out the despair and frustration in me, and then my posts wind up being gloomy and dark. That isn't the way I want the blog to go. I want it to be inspiring and helpful.
Then I remember....this IS who we are as caregivers. We spend more then a fair share of our time wading through the weeds. And sometimes the more we crawl, the deeper we seem to get. Thats where we find ourselves at the moment. Deep weeds. In the deep weeds its hard to get out of bed, its hard to push through your day trying to look normal and interact as a normal person. There are times I see an open door and I wonder if anyone would notice if I sprinted to the street and made a break for it. You become preoccupied with searching and searching and searching every corner of your brain hoping to find an idea or an answer that you hadn't thought of before. And all you find is the weeds.
I'm in the weeds because Tyler is in the weeds. In fact, I've never seen Tyler this far into the weeds before. It started about 6 months ago when his behavior normally shows its typical spring/fall improvement. Instead of going into the manic months of loud excited speech and laughing at everything he sees and hears, he slipped backward. To my knowledge nothing had changed. He wasn't going through any environmental, medical, or other changes that I can pinpoint. We immediately had CT scans done but they came back normal. We also had him tested for a UTI to no avail. By all accounts he is physically healthy, but psychiatric-ally falling apart. Since Tyler is non-verbal a lot of this is guess-work. We THINK he could possibly be hallucinating or at least in a confused state. His balance has gotten bad as well. Could that be signs of a small stroke? His interaction with even his closest people has dropped to next to nothing. He takes no joy in seeing me or the rest of his family. It almost seems like a really deep depression. He falls asleep often even while sitting for an activity. He doesn't watch his true passion - baseball - anymore. He stands almost all night at home and faces toward the back of the room.
Has he had a mental breakdown? Is he so saturated with 25 years of prescription drugs that he has experienced a chemical breakdown? A stroke? Scarring from years of seizure activity? I just don't know. And not knowing means I can't help fix him. We tried a minor medicinal change and that seems to have increased the aggression we are seeing. Add to all of this that we lost our Neurologist of 20+ years (he is a Pediatric Neurologist and was forced by his group to give him up finally at age 27) and now we have to start over with a new one. I understand the change, we knew it was coming, but the timing is really bad at the moment. The tests he needs and the suspicions I have are neurological and it will be at least 8 weeks more until I get to see the new one. I'm trying to move that up but I've been unsuccessful thus far.
My Dad is also having cancer removal surgery this week. Don't tell him I put this on the blog or he will be pissed. I'm pretty close to my dad, although he isn't the easiest man to be close to. He is just an old, old, old school guy who is getting older school by the year. He doesn't take it well when he is on the receiving end of treatment and doctors and such. I generally try to buffer between him and the doctors so he doesn't get aggravated and they aren't tempted to OD him on morphine. Despite the difficult personality, he loves his kids and grand kids and we love him right back. Everything I learned about the importance of honesty and integrity I learned from him. I respect him for that. I just hope we have more time to appreciate each other, even though we are so different.
So that's the double-whammy. And what happens to the caregiver who is already in a knockdown drag-out fight for their special person, is that the second whammy comes along as a part of normal life, and its just overwhelming. Trust me...being a caregiver doesn't make you exempt from "normal" family crisis...it doesn't make you exempt from money problems...and it doesn't make fate treat you any kinder. We get all the normal crisis on top of the full-time caregiving crisis.
Today it feels like a weight squarely across my shoulders. It has been all I can do to remain on task and be productive. But I remember the message I put on here time and again...I WILL GET THROUGH THIS. There is always a light somewhere and if we just keep crawling through the weeds we eventually find it.
Right now its just weeds....
Be well and God bless. Tom
Then I remember....this IS who we are as caregivers. We spend more then a fair share of our time wading through the weeds. And sometimes the more we crawl, the deeper we seem to get. Thats where we find ourselves at the moment. Deep weeds. In the deep weeds its hard to get out of bed, its hard to push through your day trying to look normal and interact as a normal person. There are times I see an open door and I wonder if anyone would notice if I sprinted to the street and made a break for it. You become preoccupied with searching and searching and searching every corner of your brain hoping to find an idea or an answer that you hadn't thought of before. And all you find is the weeds.
I'm in the weeds because Tyler is in the weeds. In fact, I've never seen Tyler this far into the weeds before. It started about 6 months ago when his behavior normally shows its typical spring/fall improvement. Instead of going into the manic months of loud excited speech and laughing at everything he sees and hears, he slipped backward. To my knowledge nothing had changed. He wasn't going through any environmental, medical, or other changes that I can pinpoint. We immediately had CT scans done but they came back normal. We also had him tested for a UTI to no avail. By all accounts he is physically healthy, but psychiatric-ally falling apart. Since Tyler is non-verbal a lot of this is guess-work. We THINK he could possibly be hallucinating or at least in a confused state. His balance has gotten bad as well. Could that be signs of a small stroke? His interaction with even his closest people has dropped to next to nothing. He takes no joy in seeing me or the rest of his family. It almost seems like a really deep depression. He falls asleep often even while sitting for an activity. He doesn't watch his true passion - baseball - anymore. He stands almost all night at home and faces toward the back of the room.
Has he had a mental breakdown? Is he so saturated with 25 years of prescription drugs that he has experienced a chemical breakdown? A stroke? Scarring from years of seizure activity? I just don't know. And not knowing means I can't help fix him. We tried a minor medicinal change and that seems to have increased the aggression we are seeing. Add to all of this that we lost our Neurologist of 20+ years (he is a Pediatric Neurologist and was forced by his group to give him up finally at age 27) and now we have to start over with a new one. I understand the change, we knew it was coming, but the timing is really bad at the moment. The tests he needs and the suspicions I have are neurological and it will be at least 8 weeks more until I get to see the new one. I'm trying to move that up but I've been unsuccessful thus far.
My Dad is also having cancer removal surgery this week. Don't tell him I put this on the blog or he will be pissed. I'm pretty close to my dad, although he isn't the easiest man to be close to. He is just an old, old, old school guy who is getting older school by the year. He doesn't take it well when he is on the receiving end of treatment and doctors and such. I generally try to buffer between him and the doctors so he doesn't get aggravated and they aren't tempted to OD him on morphine. Despite the difficult personality, he loves his kids and grand kids and we love him right back. Everything I learned about the importance of honesty and integrity I learned from him. I respect him for that. I just hope we have more time to appreciate each other, even though we are so different.
So that's the double-whammy. And what happens to the caregiver who is already in a knockdown drag-out fight for their special person, is that the second whammy comes along as a part of normal life, and its just overwhelming. Trust me...being a caregiver doesn't make you exempt from "normal" family crisis...it doesn't make you exempt from money problems...and it doesn't make fate treat you any kinder. We get all the normal crisis on top of the full-time caregiving crisis.
Today it feels like a weight squarely across my shoulders. It has been all I can do to remain on task and be productive. But I remember the message I put on here time and again...I WILL GET THROUGH THIS. There is always a light somewhere and if we just keep crawling through the weeds we eventually find it.
Right now its just weeds....
Be well and God bless. Tom
A Milestone Reached
Good morning. The plan is to post an update a little later today on how Mr. Tyler is doing. Before I do that, I wanted to let everyone know that the blog has reached another big round number of views! Since this blog was launched about 3 years ago we have reached the lives of 60,000 readers. I cannot express how wonderful it feels, especially now when we are in the midst of a struggle with Ty.
I'm sure Tyler would agree when I say I hope by presenting our story we have managed to help some of those 60,000 readers. Though we will never truly know, it would be great to believe that we have changed at least one life for the better. I want to believe that our words have made people laugh, cry, and most of all to think about things in a different light.
Those 60,000 views have come from all over the world, which shows that being a caregiver is a universal thing. Unfortunately, Autism, Alzheimer, and every other form of mental illness knows no boundaries. Mental illness doesn't care if you are rich or poor, black or white, young or old.
To those of you reading in Russia, Brazil, Germany, Canada, South Korea, France, India, and every other part of the world, I thank you for receiving Tyler's message from so far away. If you are a caregiver in that part of the world, I send my respect and my love. For those who follow here in the United States, I thank every one of you for being a part of this journey.
I want to leave this post with a simple thought. I am so proud of Tyler today. There are few people in this world who can touch the lives of so many. He bring encouragement and joy to everyone around him, he spreads a message of love throughout the world, and he shares Bibles with his local church. What a blessing he is.
Be well and God bless. Tom
I'm sure Tyler would agree when I say I hope by presenting our story we have managed to help some of those 60,000 readers. Though we will never truly know, it would be great to believe that we have changed at least one life for the better. I want to believe that our words have made people laugh, cry, and most of all to think about things in a different light.
Those 60,000 views have come from all over the world, which shows that being a caregiver is a universal thing. Unfortunately, Autism, Alzheimer, and every other form of mental illness knows no boundaries. Mental illness doesn't care if you are rich or poor, black or white, young or old.
To those of you reading in Russia, Brazil, Germany, Canada, South Korea, France, India, and every other part of the world, I thank you for receiving Tyler's message from so far away. If you are a caregiver in that part of the world, I send my respect and my love. For those who follow here in the United States, I thank every one of you for being a part of this journey.
I want to leave this post with a simple thought. I am so proud of Tyler today. There are few people in this world who can touch the lives of so many. He bring encouragement and joy to everyone around him, he spreads a message of love throughout the world, and he shares Bibles with his local church. What a blessing he is.
Be well and God bless. Tom
Tuesday, July 23, 2019
My Brother and I
My daughter, budding dancer and artist extraordinaire, has asked to share some thoughts on growing up with her autistic brother. So, I turn over the computer to her....and hope for the best:
Hi again my name is Samantha. And i am Tyler's sister and today i will be talking about how i feel about having a autistic brother and how i lived for 4 years with a brother like that. And to start i what to talk about is going on trips and having him on trips was great because now i don't get to do that and the best part was when you go in the wheelchair lane you get right on and i love how the people at Disney made sure he got right on because they knew what he had and now i give a big shout out to the people that did that for my brother so thank you. and i do like doing that with my brother because it is a family moment with all of my family together and i love being with my family and when we used to go to the beach together i would the same thing he would do he would take a shovel and dig sand and throw it over his shoulder and i would do the same thing and it was fun all the time to spend time with him and having a brother is really nice because some people don't get siblings and i am one of the lucky ones that get to have a sibling now some people might be saying that was it hard to bring him on trips well yes it is it is hard for all of us because we all need to keep our distant because he tends to get figity when people crowd him so that's how he gets and i have a message for you to remember and this is coming from me a kid who had experience that never judge a book by a cover because when you do that people kinda feel what your saying and it is mean to do that and that is why i now what you to know that when you see people like Tyler don't judge him he can't help that he has what he has and when i am at like Disney i feel like people are staring at him and i don't like it when people do that because it is wrong to do that and that's why i want you to appreciate these people who are going through this and you might not know but these people are trying and when people laugh at them they feel bad inside and we don't want people to do that so when ever you see someone talking or laughing i want you to step up for whoever it is you need to step up for them because that is the right thing to do and that's what i want you to do because these people can't fight for themselves so my message is that you don't judge a book by it's cover and i want you to stay beautiful, awesome, and loving and be nice to everyone you meet and no matter where you live there is love in the air and that's why be nice anywhere you go and to anyone you meet so love you Tyler and bye for now .
Let's review. First it appears we need to work on punctuation (any would be helpful!). I wasn't sure about her loving Disney for the perks of skipping lines, but glad she recovered by shouting out to the Disney employees for making sure Tyler was so well taken care of. What strikes me the most is that she is THANKFUL to have a brother, even one who made things more challenging for her. She obviously wants everyone to treat their fellow man with kindness and respect, which is one thing that I truly love the most about her.
We can learn a lot from the eyes and heart of a child. Maybe she is telling us the greatest 3 things we can all do....all in one glorious run-on sentence:
1. Enjoy every little moment with your family
2. Be thankful no matter what challenges you face
3. Be kind and love everyone no matter what their "cover" might look like
Pretty profound stuff. Thanks Sam.
Be well and God bless. Tom
Hi again my name is Samantha. And i am Tyler's sister and today i will be talking about how i feel about having a autistic brother and how i lived for 4 years with a brother like that. And to start i what to talk about is going on trips and having him on trips was great because now i don't get to do that and the best part was when you go in the wheelchair lane you get right on and i love how the people at Disney made sure he got right on because they knew what he had and now i give a big shout out to the people that did that for my brother so thank you. and i do like doing that with my brother because it is a family moment with all of my family together and i love being with my family and when we used to go to the beach together i would the same thing he would do he would take a shovel and dig sand and throw it over his shoulder and i would do the same thing and it was fun all the time to spend time with him and having a brother is really nice because some people don't get siblings and i am one of the lucky ones that get to have a sibling now some people might be saying that was it hard to bring him on trips well yes it is it is hard for all of us because we all need to keep our distant because he tends to get figity when people crowd him so that's how he gets and i have a message for you to remember and this is coming from me a kid who had experience that never judge a book by a cover because when you do that people kinda feel what your saying and it is mean to do that and that is why i now what you to know that when you see people like Tyler don't judge him he can't help that he has what he has and when i am at like Disney i feel like people are staring at him and i don't like it when people do that because it is wrong to do that and that's why i want you to appreciate these people who are going through this and you might not know but these people are trying and when people laugh at them they feel bad inside and we don't want people to do that so when ever you see someone talking or laughing i want you to step up for whoever it is you need to step up for them because that is the right thing to do and that's what i want you to do because these people can't fight for themselves so my message is that you don't judge a book by it's cover and i want you to stay beautiful, awesome, and loving and be nice to everyone you meet and no matter where you live there is love in the air and that's why be nice anywhere you go and to anyone you meet so love you Tyler and bye for now .
Let's review. First it appears we need to work on punctuation (any would be helpful!). I wasn't sure about her loving Disney for the perks of skipping lines, but glad she recovered by shouting out to the Disney employees for making sure Tyler was so well taken care of. What strikes me the most is that she is THANKFUL to have a brother, even one who made things more challenging for her. She obviously wants everyone to treat their fellow man with kindness and respect, which is one thing that I truly love the most about her.
We can learn a lot from the eyes and heart of a child. Maybe she is telling us the greatest 3 things we can all do....all in one glorious run-on sentence:
1. Enjoy every little moment with your family
2. Be thankful no matter what challenges you face
3. Be kind and love everyone no matter what their "cover" might look like
Pretty profound stuff. Thanks Sam.
Be well and God bless. Tom
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