I grew up watching MASH and still enjoy the reruns after all these years. One of my favorite characters was Father Mulcahy for his gentle and human demeanor.
As it turns out, we had a lot more in common than I thought. Mr. Christopher was the father to an autistic son, and spent much of his time as an advocate for autism awareness. He also wrote a book about his own experiences called "Mixed Blessings".
William Christopher did things to try and raise awareness as far back as 30 years ago when there was even less knowledge than there is today.
Thanks you sir for your contribution to autism awareness. RIP
Saturday, December 31, 2016
Your Gift
I believe that EVERYONE has a gift.
As a society I believe that we have learned to focus more on personal gratification rather than finding the gifts that we have been blessed with. Those gifts are the very things that we can use to not only be personally happy, but to bring joy to others.
My daughter likes to dance. When we attend her recitals we are not expecting that the young girls are going to be the Rockettes, but they are pretty darn good. When they stand on that stage they are smiling and stepping and their spirit ripples through the entire crowd. Whether she realizes it or not she is using her gifts of a beautiful smile and coordinated feet to make other people happy.
I believe that when a painter does a picture it is a piece of themselves that they are laying onto the canvas. It is their emotions that blend with the colors. It is their imagination that creates every line. They are willing to allow that piece of themselves to be placed directly in front of them as though staring straight into a mirror, and then exposing that image to everyone else.
Writing is no different in that regard. Or singing. Or playing a sport. The person willing to use that gift is assuming the risk of "failure" in order to do the thing the were called to do. These are not the only gifts however. For some people their gift is to make other people laugh or smile. For others they may have the gift of telling great stories. Others may be gifted at being compassionate and caring for others. But we need to ask ourselves two very important question. First, what IS my gift? And secondly, am I using that gift to bring happiness to myself and others?
I think of my painter friend Tom. He has a tremendous talent for bringing an entire story to life with a single image. You are not just looking at his subject, but you can feel yourself being in that very place. Tom obviously has taught himself to translate his emotions and vision onto a plain white piece of paper. But what impresses me even far more than that is the joy he receives by placing that work into someone else's hands. We have 2 of his paintings and they mean the world to us because we know the heart that they come from. Right now he is working on a collection which will be auctioned off for a local charity benefiting special needs families.
The point is, in order to make the world a better place we have to use the gifts we have been given to contribute the best way we can. We have to share our knowledge to enhance someone else's life. If you share your gift with others, you can never go wrong, you will never fail. Most importantly, you may touch someone's life in ways that you can never fully understand.
Be well and God bless. Tom
As a society I believe that we have learned to focus more on personal gratification rather than finding the gifts that we have been blessed with. Those gifts are the very things that we can use to not only be personally happy, but to bring joy to others.
My daughter likes to dance. When we attend her recitals we are not expecting that the young girls are going to be the Rockettes, but they are pretty darn good. When they stand on that stage they are smiling and stepping and their spirit ripples through the entire crowd. Whether she realizes it or not she is using her gifts of a beautiful smile and coordinated feet to make other people happy.
I believe that when a painter does a picture it is a piece of themselves that they are laying onto the canvas. It is their emotions that blend with the colors. It is their imagination that creates every line. They are willing to allow that piece of themselves to be placed directly in front of them as though staring straight into a mirror, and then exposing that image to everyone else.
Writing is no different in that regard. Or singing. Or playing a sport. The person willing to use that gift is assuming the risk of "failure" in order to do the thing the were called to do. These are not the only gifts however. For some people their gift is to make other people laugh or smile. For others they may have the gift of telling great stories. Others may be gifted at being compassionate and caring for others. But we need to ask ourselves two very important question. First, what IS my gift? And secondly, am I using that gift to bring happiness to myself and others?
I think of my painter friend Tom. He has a tremendous talent for bringing an entire story to life with a single image. You are not just looking at his subject, but you can feel yourself being in that very place. Tom obviously has taught himself to translate his emotions and vision onto a plain white piece of paper. But what impresses me even far more than that is the joy he receives by placing that work into someone else's hands. We have 2 of his paintings and they mean the world to us because we know the heart that they come from. Right now he is working on a collection which will be auctioned off for a local charity benefiting special needs families.
The point is, in order to make the world a better place we have to use the gifts we have been given to contribute the best way we can. We have to share our knowledge to enhance someone else's life. If you share your gift with others, you can never go wrong, you will never fail. Most importantly, you may touch someone's life in ways that you can never fully understand.
Be well and God bless. Tom
Tuesday, December 27, 2016
20,000 Views
Good evening!
Today our blog surpassed 20,000 page views. That is a number that simply blows me away. I can only hope that within that large number there have been people who found a greater sense of hope. Maybe there were a few people who felt less alone in their struggles. Hopefully it made a lot of people smile. I especially hope that the posts cause readers to think in different ways than they did before.
My goal is that someone out there was better off because of something they read.
Thank you all so much for being a big part of what happens here. God Bless. Tom
Today our blog surpassed 20,000 page views. That is a number that simply blows me away. I can only hope that within that large number there have been people who found a greater sense of hope. Maybe there were a few people who felt less alone in their struggles. Hopefully it made a lot of people smile. I especially hope that the posts cause readers to think in different ways than they did before.
My goal is that someone out there was better off because of something they read.
Thank you all so much for being a big part of what happens here. God Bless. Tom
Saturday, December 24, 2016
Merry Christmas Eve
Good Evening!!
We were so thrilled to get to have dinner with Tyler tonight. He looked very healthy and was just as happy to see us as we were to see him. As usually we spent about an hour with him over some dinner (this time it was some pizza and fries!). Everyone got to get some hugs and kisses, and pose for some photos.
We noticed that each of these visits are getting more familiar and less stressful for him. When he left with his staffer he was smiling and waiving and ready to return to his new surroundings. He is an adult now and has an adult life.
For us it is so important that he feels the comfort and love of his family around him throughout the holidays. Regardless of where his life leads him, he is still a beloved part of his family.
Seeing him smile was worth more than anything you could ever put in a box or envelope.
Merry Christmas to you all.
We were so thrilled to get to have dinner with Tyler tonight. He looked very healthy and was just as happy to see us as we were to see him. As usually we spent about an hour with him over some dinner (this time it was some pizza and fries!). Everyone got to get some hugs and kisses, and pose for some photos.
We noticed that each of these visits are getting more familiar and less stressful for him. When he left with his staffer he was smiling and waiving and ready to return to his new surroundings. He is an adult now and has an adult life.
For us it is so important that he feels the comfort and love of his family around him throughout the holidays. Regardless of where his life leads him, he is still a beloved part of his family.
Seeing him smile was worth more than anything you could ever put in a box or envelope.
Merry Christmas to you all.
Christmas Story
Good morning!
Hard to believe it is already Christmas Eve. Regardless of where you are and how/what you celebrate, I wish peace and happiness for us all.
Our traditions with Samantha have become so much fun and gives us a lot to look forward to. Every year we circle the neighborhood to see the lights, bake cookies for Santa, and track Santa on the Norad Santa Tracker. Another tradition is to give Samantha a gift on xmas eve of a new pair of pj's and a movie to watch before heading to bed. She loves her traditions and they are important to her.
Today we are tracking Santa (he is currently visiting my friends in China), going to have dinner with Tyler, and then having my nephew and his wife over tonight. It will be great to see Tyler and make sure he feels our love at Christmas time. We put together a nice photo collage for him, along with some restaurant gift cards to enjoy his favorite dinners. We also have some bubble wrap collected for him to enjoy popping!
I was thinking about what stands out as a Christmas memory with Tyler. I would have to say its the BALL PIT! We used to take Tyler to an indoor playground to play and his favorite thing was jumping into the ball pit. He would laugh and scream and swim all over them. He wanted other people to jump in with him and play. So at Christmas time we bought him an inflatable ball pit and about 300 plastic balls. We set it all up the night before to have it ready for him. We wondered what his reaction would be....
The next morning I had the video camera ready and filmed him slowly coming down the stairs. He turned the corner at the bottom and looked right where the ball pit was sitting. There was a pause. You could see Tyler was trying to wrap his head around what he was seeing. Then....with a scream....he ran straight for the pit and jump in! The great news was how much he loved it. The bad news was he would not be interested in anything else from that point on for quite a while! He took to it like nothing else he was every given.
It didn't take long for the inflatable walls to become a deflated nightmare so we bought him a plastic kiddie pool and filled it up with even more balls. We kept it in his bedroom and every morning for a very long time we woke up to the sound of a kid jumping into a sea of plastic balls. There were even mornings that we went over to his room to find him sleeping in his ball pit. Of course he eventually lost interest but I look back on that very fondly.
To all my readers who care for their special needs children, my wish for you this Christmas is to make a memory that will live fondly in your heart forever. And to feel the warmth and joy of the season.
Be well and God bless. Tom
Hard to believe it is already Christmas Eve. Regardless of where you are and how/what you celebrate, I wish peace and happiness for us all.
Our traditions with Samantha have become so much fun and gives us a lot to look forward to. Every year we circle the neighborhood to see the lights, bake cookies for Santa, and track Santa on the Norad Santa Tracker. Another tradition is to give Samantha a gift on xmas eve of a new pair of pj's and a movie to watch before heading to bed. She loves her traditions and they are important to her.
Today we are tracking Santa (he is currently visiting my friends in China), going to have dinner with Tyler, and then having my nephew and his wife over tonight. It will be great to see Tyler and make sure he feels our love at Christmas time. We put together a nice photo collage for him, along with some restaurant gift cards to enjoy his favorite dinners. We also have some bubble wrap collected for him to enjoy popping!
I was thinking about what stands out as a Christmas memory with Tyler. I would have to say its the BALL PIT! We used to take Tyler to an indoor playground to play and his favorite thing was jumping into the ball pit. He would laugh and scream and swim all over them. He wanted other people to jump in with him and play. So at Christmas time we bought him an inflatable ball pit and about 300 plastic balls. We set it all up the night before to have it ready for him. We wondered what his reaction would be....
The next morning I had the video camera ready and filmed him slowly coming down the stairs. He turned the corner at the bottom and looked right where the ball pit was sitting. There was a pause. You could see Tyler was trying to wrap his head around what he was seeing. Then....with a scream....he ran straight for the pit and jump in! The great news was how much he loved it. The bad news was he would not be interested in anything else from that point on for quite a while! He took to it like nothing else he was every given.
It didn't take long for the inflatable walls to become a deflated nightmare so we bought him a plastic kiddie pool and filled it up with even more balls. We kept it in his bedroom and every morning for a very long time we woke up to the sound of a kid jumping into a sea of plastic balls. There were even mornings that we went over to his room to find him sleeping in his ball pit. Of course he eventually lost interest but I look back on that very fondly.
To all my readers who care for their special needs children, my wish for you this Christmas is to make a memory that will live fondly in your heart forever. And to feel the warmth and joy of the season.
Be well and God bless. Tom
Thursday, December 22, 2016
Happy Holidays
First of all, let me say I hope all of the visitors to the blog have a wonderful Holiday Season. May we all find inner peace and see more outer peace in the years to come.
The holidays are hard for Tyler. And in turn they have always been hard for us. They come in the middle of his more aggressive and anxious mood swing periods, so they seem to just increase the anxiety.
One of my most important goals as a Dad is to take the good things and bad things about my own childhood and use them to give my children a more well rounded upbringing. I would like to think that every parent, regardless of their own experiences, want to make things even one degree better for their own children. This is one thing that makes parenting a special needs child SO HARD. No matter what I tried to do in so many instances it wasn't possible to give Tyler the sort of experiences I would have liked to. Or at least the ones that I was picturing in my own mind.
When Tyler was very young, it was somewhat easier. Tyler's reactions the first 6 or 7 years were similar to typical children. Add to that he was small enough to physically control in crowds or busy holiday activities. He seemed to enjoy being social. The following 6 or 7 years things were more difficult. Some of the social anxiety began to show up, and there was less joy with gifts and all of those other festivities. We moved toward more home based activities to make him more comfortable. The last group of years were the most difficult. Tyler had to be closely guarded, even with family. Doing festivities outside of the home was incredibly hard. Tyler would often never even open his gifts because he just wasn't interested. The holidays were almost something to dread.
To be very honest, this was a very hard path for me to walk down. I wanted Tyler to enjoy Christmas and New Years like everyone else. Heck, I wanted to enjoy festivities like other people. I wanted my wife to feel she was enjoying herself. I especially wanted my daughter to feel as though she were having magical holidays. I often got focused on how "unfair" the whole thing was and how I was falling short as a dad and a husband.
I think looking back now this just wasn't true. No matter what stage in Tyler's development we were in, he still had the important things in his life. He always had his friends and family loving him and supporting him. He always had good food and a warm house. Most importantly, we were always doing our very best to make his holiday special.
If you are reading this, and you are struggling with how the holidays effect your special needs dynamic, please remember that the foundation of this season is the environment you surround your family with. Providing every ounce of your heart is what your children will remember. Giving them laughter and smiles and warmth and security is what they will remember. Knowing that you loved them and that everything came from your heart is what they will remember. Doing the absolute best that you can will come through regardless of whether there are 100 gifts and parties, or two.
When our children become adults, and they look back as we do now, they will remember the smell of homemade cookies, or putting cookies and milk out for Santa, or going to Christmas eve church service, reading "twas the night before Christmas", friends and family coming to visit, driving and looking at lights, etc. Those SIMPLE family pleasures are what they will think of and smile.
If you keep things simple, family and faith based, and show how much love you have for them....you will have done everything they need.
Bless you this Holiday Season.
Tom
The holidays are hard for Tyler. And in turn they have always been hard for us. They come in the middle of his more aggressive and anxious mood swing periods, so they seem to just increase the anxiety.
One of my most important goals as a Dad is to take the good things and bad things about my own childhood and use them to give my children a more well rounded upbringing. I would like to think that every parent, regardless of their own experiences, want to make things even one degree better for their own children. This is one thing that makes parenting a special needs child SO HARD. No matter what I tried to do in so many instances it wasn't possible to give Tyler the sort of experiences I would have liked to. Or at least the ones that I was picturing in my own mind.
When Tyler was very young, it was somewhat easier. Tyler's reactions the first 6 or 7 years were similar to typical children. Add to that he was small enough to physically control in crowds or busy holiday activities. He seemed to enjoy being social. The following 6 or 7 years things were more difficult. Some of the social anxiety began to show up, and there was less joy with gifts and all of those other festivities. We moved toward more home based activities to make him more comfortable. The last group of years were the most difficult. Tyler had to be closely guarded, even with family. Doing festivities outside of the home was incredibly hard. Tyler would often never even open his gifts because he just wasn't interested. The holidays were almost something to dread.
To be very honest, this was a very hard path for me to walk down. I wanted Tyler to enjoy Christmas and New Years like everyone else. Heck, I wanted to enjoy festivities like other people. I wanted my wife to feel she was enjoying herself. I especially wanted my daughter to feel as though she were having magical holidays. I often got focused on how "unfair" the whole thing was and how I was falling short as a dad and a husband.
I think looking back now this just wasn't true. No matter what stage in Tyler's development we were in, he still had the important things in his life. He always had his friends and family loving him and supporting him. He always had good food and a warm house. Most importantly, we were always doing our very best to make his holiday special.
If you are reading this, and you are struggling with how the holidays effect your special needs dynamic, please remember that the foundation of this season is the environment you surround your family with. Providing every ounce of your heart is what your children will remember. Giving them laughter and smiles and warmth and security is what they will remember. Knowing that you loved them and that everything came from your heart is what they will remember. Doing the absolute best that you can will come through regardless of whether there are 100 gifts and parties, or two.
When our children become adults, and they look back as we do now, they will remember the smell of homemade cookies, or putting cookies and milk out for Santa, or going to Christmas eve church service, reading "twas the night before Christmas", friends and family coming to visit, driving and looking at lights, etc. Those SIMPLE family pleasures are what they will think of and smile.
If you keep things simple, family and faith based, and show how much love you have for them....you will have done everything they need.
Bless you this Holiday Season.
Tom
Friday, December 16, 2016
Siblings
This post is dedicated to my beautiful daughter Sam.
Much of what I write about is intended for caregivers, but there is a group of people that unfortunately are somewhat under-the-radar; siblings. Being the sibling of a special needs person is an especially difficult place to be.
Sam was born when her brother was 17. Tyler already had a predetermined dislike for small children so we knew that we would have to work hard to protect the best interest of both children.
We were amazed how quickly Sam instinctively knew that her brother was different. Even before she turned one and she was pulling herself up to stand against furniture, she wouldn't do it right next to him. And for the most part, as far as Tyler was concerned, this kept the peace. Somehow she understood to keep a safe cushion, we helped to act as a buffer, and Tyler exercised as much patience as he could afford.
I want to make this important point: Sam now exhibits an unusual amount of compassion and empathy for other people. One day we were at a wildlife park and she was feeding some small animals. She saw a little girl without animal food and immediately went and shared hers....she never thought twice. Another time she saw a neighbor friend crying after the last day of school. As soon Sam got home she drew the girl a picture to try to cheer her up. I believe that her experience with Tyler has given her that concern for others. There have been wonderful puzzle pieces added to her picture that have Tyler's colors all over them.
It did not come without a price. Sam lived in a house where she had to be careful which room she would enter at particular times. If Tyler entered the room without someone else close by, she would scoot under a table or flee to another room. This was her reality. She had to live HER life on HIS terms. When I was out of town she had to spend evenings with friends or relatives so she would remain secure while Robin cared for Tyler. Most leisure activities depended on Tyler's condition and was done how he needed them to be done. While this was the smart and safe way to approach things, it also placed Sam's needs as a constant second. Of course that was never the intention, but it was her reality. She made tremendous sacrifices for the sake of the whole family.
There were things we did right, and other things that we would do over again. If I were giving advice it would be:
1. Make sure the sibling has their own identity and outside interests. Sam had friends, pre-school, and dance. Tyler was a big part of her life, but she also had her life in other ways
2. Make sure there is personal time for the sibling. I know Sam loved "Sam and Daddy day" where we would get lunch and do things just her and I. It made her feel special.
3. Have open and honest dialog with the sibling. Do not minimize or excuse their feelings. Explain the things that happen in a way they can understand. This will teach them that their input and feelings are as valuable as anyone else.
4. Inform teachers of the sibling's home circumstances. We asked all of Sam's teachers to inform us if they see anything unusual. If Sam became depressed, anxious, or exhibited troubling behaviors we needed to know right away. Fortunately, to this point, this has not been the case.
5. Do the little things. You can't say "I love you" too often. You can't hug them enough. The feeling of being nurtured and protected is pure gold
The sibling is part of the overall dynamic....true....but they are unique individuals that perhaps more than nearly everyone else, need to hear that and feel that every day.
Be well and God bless. Tom
Much of what I write about is intended for caregivers, but there is a group of people that unfortunately are somewhat under-the-radar; siblings. Being the sibling of a special needs person is an especially difficult place to be.
Sam was born when her brother was 17. Tyler already had a predetermined dislike for small children so we knew that we would have to work hard to protect the best interest of both children.
We were amazed how quickly Sam instinctively knew that her brother was different. Even before she turned one and she was pulling herself up to stand against furniture, she wouldn't do it right next to him. And for the most part, as far as Tyler was concerned, this kept the peace. Somehow she understood to keep a safe cushion, we helped to act as a buffer, and Tyler exercised as much patience as he could afford.
I want to make this important point: Sam now exhibits an unusual amount of compassion and empathy for other people. One day we were at a wildlife park and she was feeding some small animals. She saw a little girl without animal food and immediately went and shared hers....she never thought twice. Another time she saw a neighbor friend crying after the last day of school. As soon Sam got home she drew the girl a picture to try to cheer her up. I believe that her experience with Tyler has given her that concern for others. There have been wonderful puzzle pieces added to her picture that have Tyler's colors all over them.
It did not come without a price. Sam lived in a house where she had to be careful which room she would enter at particular times. If Tyler entered the room without someone else close by, she would scoot under a table or flee to another room. This was her reality. She had to live HER life on HIS terms. When I was out of town she had to spend evenings with friends or relatives so she would remain secure while Robin cared for Tyler. Most leisure activities depended on Tyler's condition and was done how he needed them to be done. While this was the smart and safe way to approach things, it also placed Sam's needs as a constant second. Of course that was never the intention, but it was her reality. She made tremendous sacrifices for the sake of the whole family.
There were things we did right, and other things that we would do over again. If I were giving advice it would be:
1. Make sure the sibling has their own identity and outside interests. Sam had friends, pre-school, and dance. Tyler was a big part of her life, but she also had her life in other ways
2. Make sure there is personal time for the sibling. I know Sam loved "Sam and Daddy day" where we would get lunch and do things just her and I. It made her feel special.
3. Have open and honest dialog with the sibling. Do not minimize or excuse their feelings. Explain the things that happen in a way they can understand. This will teach them that their input and feelings are as valuable as anyone else.
4. Inform teachers of the sibling's home circumstances. We asked all of Sam's teachers to inform us if they see anything unusual. If Sam became depressed, anxious, or exhibited troubling behaviors we needed to know right away. Fortunately, to this point, this has not been the case.
5. Do the little things. You can't say "I love you" too often. You can't hug them enough. The feeling of being nurtured and protected is pure gold
The sibling is part of the overall dynamic....true....but they are unique individuals that perhaps more than nearly everyone else, need to hear that and feel that every day.
Be well and God bless. Tom
Puzzle Pieces
Good afternoon!
We have all seen by now that the symbol for autism is the puzzle piece. I see this as a symbol of the inner complexities for those on the spectrum, as well as the outer challenge of finding that person's place in a difficult world.
By nature I believe that all people are a picture that is made up of many pieces. We are born with a set of pieces, but we are not a complete picture. We collect more puzzle pieces as we go through life. Some are bright and colorful, while others might be darker. But like a puzzle, EVERY piece is important and the picture cannot be completed without them. Some are so important in our lives that they become the corner pieces that frame the entire picture. I believe when we have close relationships or relationships with great impact, whether for better or worse, we add more pieces.
Tyler is made up of many pieces as well. So many people may not realize how much they have contributed to his picture. He has a very unique personality which he brought into this world all by himself. But there were others who gave him pieces through their love for him, or their tremendous talent to help him, or by just being by his side.
For those of you reading this....parents, grandparents, siblings, teachers, therapists, friends, nurses, pastors, etc...you are all a piece in someone's puzzle. When you show love and compassion you are adding colors to their picture.
Living with and working with someone with special needs is a labor of love. I've yet to hear anyone say they have purchased a yacht with the abundance of money coming from it. The hours are long, the pay is low, and the job can be hazardous. But we don't do it for money do we? Or for pats on the back. Or for Nobel Prizes. We do it because a person needs our help. We do it because we believe that no matter the circumstances every person deserves to be treated with dignity and respect, and have their basic needs attended to. By doing this we add very important pieces to their puzzle.
Tyler has added incredible colors to my picture. Many of them are amazing and bright, while some of them are darker and swirling. But there isn't a brush stroke that I would change.
Be well and God bless. Tom
We have all seen by now that the symbol for autism is the puzzle piece. I see this as a symbol of the inner complexities for those on the spectrum, as well as the outer challenge of finding that person's place in a difficult world.
By nature I believe that all people are a picture that is made up of many pieces. We are born with a set of pieces, but we are not a complete picture. We collect more puzzle pieces as we go through life. Some are bright and colorful, while others might be darker. But like a puzzle, EVERY piece is important and the picture cannot be completed without them. Some are so important in our lives that they become the corner pieces that frame the entire picture. I believe when we have close relationships or relationships with great impact, whether for better or worse, we add more pieces.
Tyler is made up of many pieces as well. So many people may not realize how much they have contributed to his picture. He has a very unique personality which he brought into this world all by himself. But there were others who gave him pieces through their love for him, or their tremendous talent to help him, or by just being by his side.
For those of you reading this....parents, grandparents, siblings, teachers, therapists, friends, nurses, pastors, etc...you are all a piece in someone's puzzle. When you show love and compassion you are adding colors to their picture.
Living with and working with someone with special needs is a labor of love. I've yet to hear anyone say they have purchased a yacht with the abundance of money coming from it. The hours are long, the pay is low, and the job can be hazardous. But we don't do it for money do we? Or for pats on the back. Or for Nobel Prizes. We do it because a person needs our help. We do it because we believe that no matter the circumstances every person deserves to be treated with dignity and respect, and have their basic needs attended to. By doing this we add very important pieces to their puzzle.
Tyler has added incredible colors to my picture. Many of them are amazing and bright, while some of them are darker and swirling. But there isn't a brush stroke that I would change.
Be well and God bless. Tom
Saturday, December 10, 2016
Doing the Right Thing
There are times in your life when you have to stand your ground for what you believe in. And there are times when doing so means you have to stand alone. There is a saying that goes something like:
What is right is not always popular, and what is popular is not always right.
When you are dealing with a special needs situation this can be a very important thing to remember. Let me pass along this story as an example:
Tyler has a shunt which keeps fluid pressure from building up around his brain. The shunt is designed to allow fluid to slowly drain down a tube into his abdomen. It's basically a pressure valve that opens under pressure to relieve the fluid.
One day Tyler was showing signs that his shunt was not operating properly. He was cocking his head back, wincing, and grinding his teeth. He also wouldn't turn his head very much. I was called home from work and by the time I arrived he was unconscious and would not awaken. We called the hospital and alerted them he was coming in. Once he was evaluated we were told that the anesthesiologist refused to prep him for surgery due to Tyler eating some applesauce a few hours before that, which increased the risks. We were told to GO HOME and come back in the morning. I was livid. There was no way, no matter who told me to, I was taking an unconscious boy home. He was in trouble and I knew it.
We refused to budge. The nurses felt helpless and the anesthesiologist refused to see us. It was me against the establishment and the stakes were too high to back down. The only thing I could do was to call our neurosurgeon and plead for his help. He is one guy I knew we could trust. I was in tears when I told him I was stuck. When he heard the whole story he lit up the hospital staff in a BIG way. Within minutes he was being prepped for surgery. As usual Tyler recovered fully and quickly.
Some months later I talked to the neurosurgeon and asked (off the record) what would have happened if I would have taken Tyler home as I was told. "Likely", he said, "Tyler would have been in a coma or dead by morning".
I've not always been right....far from it. But when I knew in my heart of hearts that I was right, and Tyler needed me to be, I stood my ground. And really, I was standing his ground for him. I'd rather have been wrong and Tyler be in less danger than I thought, than have lost my son listening to everyone else.
I think this is a good lesson for our lives in general. Do what is in your heart and if that flies against conventional wisdom or isn't popular, don't let that stop you. Because in the end, after all is said and done, if you can look at yourself in the mirror and know you always did what you felt was best, then the rest will just fall away. Anybody can do what is popular, but it takes a special person to whats right.
Be well and God bless. Tom
What is right is not always popular, and what is popular is not always right.
When you are dealing with a special needs situation this can be a very important thing to remember. Let me pass along this story as an example:
Tyler has a shunt which keeps fluid pressure from building up around his brain. The shunt is designed to allow fluid to slowly drain down a tube into his abdomen. It's basically a pressure valve that opens under pressure to relieve the fluid.
One day Tyler was showing signs that his shunt was not operating properly. He was cocking his head back, wincing, and grinding his teeth. He also wouldn't turn his head very much. I was called home from work and by the time I arrived he was unconscious and would not awaken. We called the hospital and alerted them he was coming in. Once he was evaluated we were told that the anesthesiologist refused to prep him for surgery due to Tyler eating some applesauce a few hours before that, which increased the risks. We were told to GO HOME and come back in the morning. I was livid. There was no way, no matter who told me to, I was taking an unconscious boy home. He was in trouble and I knew it.
We refused to budge. The nurses felt helpless and the anesthesiologist refused to see us. It was me against the establishment and the stakes were too high to back down. The only thing I could do was to call our neurosurgeon and plead for his help. He is one guy I knew we could trust. I was in tears when I told him I was stuck. When he heard the whole story he lit up the hospital staff in a BIG way. Within minutes he was being prepped for surgery. As usual Tyler recovered fully and quickly.
Some months later I talked to the neurosurgeon and asked (off the record) what would have happened if I would have taken Tyler home as I was told. "Likely", he said, "Tyler would have been in a coma or dead by morning".
I've not always been right....far from it. But when I knew in my heart of hearts that I was right, and Tyler needed me to be, I stood my ground. And really, I was standing his ground for him. I'd rather have been wrong and Tyler be in less danger than I thought, than have lost my son listening to everyone else.
I think this is a good lesson for our lives in general. Do what is in your heart and if that flies against conventional wisdom or isn't popular, don't let that stop you. Because in the end, after all is said and done, if you can look at yourself in the mirror and know you always did what you felt was best, then the rest will just fall away. Anybody can do what is popular, but it takes a special person to whats right.
Be well and God bless. Tom
Tuesday, December 6, 2016
You Might Be a Special Needs Parent
Good evening. This is a test to find out if you are indeed a Special Needs Parent! (Done in the style of a famous performer...)
If you have an honorary degree in patching drywall....you might be a special needs parent
If its been so long since you've been to the doctor that they thought you were dead.....you might be a special needs parent
If you call 9-1-1 and they immediately refer to you by name....you might be a special needs parent
If "going fishing" to you means retrieving something thrown into the toilet....you might be a special needs parent
If there is currently a food item stuck on your ceiling...you might be a special needs parent
If the bags under your eyes have to be checked in at the airport....you might be a special needs parent
If a special dinner out means supersizing your drive-thru meal....you might be a special needs parent
If you tell stories that sends your therapist to HIS therapist....you might be a special needs parent
If the question "can't you just get a babysitter" makes you reach for a bottle of wine....you might be a special needs parent
If a good night's sleep comes as often as Haley's comet....you might be a special needs parent
If you consider 5 minutes in the bathroom as your "me time"...you might be a special needs parent
If you fear a full moon like a vampire fears sunlight.....you might be a special needs parent
If you know where the exits are as soon as you enter a room....you might be a special needs parent
If you ever had a bruise so big you gave it a nickname....you might be a special needs parent
If you watch "Cops" just to see the cops at somebody else's house for once....you might be a special needs parent
If your child thinks the house is "clothing optional"....you might be a special needs parent
And most of all...
If you can find a little humor and light in everything you do, and if you love your special person without fail and without conditions, and everything you do is dedicated to the well-being of your family......you must be a wonderful special needs parent.
Be well and God bless. Tom
If you have an honorary degree in patching drywall....you might be a special needs parent
If its been so long since you've been to the doctor that they thought you were dead.....you might be a special needs parent
If you call 9-1-1 and they immediately refer to you by name....you might be a special needs parent
If "going fishing" to you means retrieving something thrown into the toilet....you might be a special needs parent
If there is currently a food item stuck on your ceiling...you might be a special needs parent
If the bags under your eyes have to be checked in at the airport....you might be a special needs parent
If a special dinner out means supersizing your drive-thru meal....you might be a special needs parent
If you tell stories that sends your therapist to HIS therapist....you might be a special needs parent
If the question "can't you just get a babysitter" makes you reach for a bottle of wine....you might be a special needs parent
If a good night's sleep comes as often as Haley's comet....you might be a special needs parent
If you consider 5 minutes in the bathroom as your "me time"...you might be a special needs parent
If you fear a full moon like a vampire fears sunlight.....you might be a special needs parent
If you know where the exits are as soon as you enter a room....you might be a special needs parent
If you ever had a bruise so big you gave it a nickname....you might be a special needs parent
If you watch "Cops" just to see the cops at somebody else's house for once....you might be a special needs parent
If your child thinks the house is "clothing optional"....you might be a special needs parent
And most of all...
If you can find a little humor and light in everything you do, and if you love your special person without fail and without conditions, and everything you do is dedicated to the well-being of your family......you must be a wonderful special needs parent.
Be well and God bless. Tom
Monday, December 5, 2016
Rain Man
Good Evening!
One thing that I have been asked many times over the years is if Tyler has any special skills like "Rain Man". The movie happened to be on tonight and it was astounding to realize it is nearly 30 years old! For as limited as our knowledge of autism is today, I'm pretty impressed by the portrayal from that long ago. It also means I'm getting OLD!
Now, back to the question. Raymond was actually an "autistic savant". In times past this was known as an "idiot savant", so thank goodness for some political correctness. Interestingly about 10% of the autistic population has a specialized ability which would by definition make them a savant. In the non-autistic population this is prevalent in less than 1% of people. To my knowledge there is no known explanation for this. It shows that we really do not know much about how the autistic brain functions. Tyler never exhibited any particular savant tendencies. But at the same time, there were stark inconsistencies in his skills. For example, Tyler could shoot hoops with a great deal of accuracy, he could do multiple shape puzzles with relative ease, and yet he would often forget how to get from one room to the next.
I saw a great deal of Tyler in Dustin Hoffman's portrayal. And I saw a fair amount of myself in Tom Cruise's character as well.
Ironically, Tyler and I touch foreheads like this as a sign of love and respect for each other. He is no longer comfortable with hugging but he has always been comfortable with this.
During the movie you watch an interesting dynamic...Raymond doesn't change a bit, he is what he is no matter what, but it's Charlie that DOES change. Charlie becomes more willing to come into Raymond's world instead of trying to force Raymond into his. Where Charlie hated trivial things in the beginning, he learns to understand the importance of them by the end. Charlie goes from living for his own agenda to making decisions that are selfless and hard.
And there are the funny parts too. I enjoy watching the People's Court (its my daily guilty sin) and if I am running late my wife will mock me..."they are making legal history Ray...LEGAL HISTORY!".
There are sad parts that really hit home. Charlie teaches Ray to dance and begins to feel this tremendous connection, so in the end he asks Ray if he wants a hug. Ray reacts extremely defensively and Charlie is abruptly reminded that there are limits to even the good moments. This is an amazingly accurate depiction of the relationship between caregiver and autistic person. The target constantly moves and you can never become absolute about anything or else you will be snapped back to reality.
If you happen to have the chance to watch Rain Man I would encourage you to do so, and carefully watch how Cruise's character changes and evolves. As a caregiver I promise you will see yourself in more spots than one. Also try to find some takeaway items. For me it is a reminder that my job is to help Tyler grow and be as secure as possible, but that I cannot CHANGE his true makeup. I must also continue to grow and understand his needs and see the world from his point of view.
Be well and God bless.
Tom
Sunday, December 4, 2016
Baptism Today
All I can say is "WOW". I don't even know where to start.
I've not been to a lot of different churches. I have, however, seen very large mega-style churches, small churches, and even the Cathedral at Notre Dame. I have never been more genuinely impressed by a church than I was today. Red Lion Zion doesn't have fancy pews, or a coffee shop, or a pastor who drives a Jaguar. It struck me as a modest dwelling that has just what it needs but not much that it doesn't. What it does have, in an overflowing abundance, is HEART. I saw a congregation full of people that were there because they believe in fellowship in the purist sense. Each one sat with open hearts and minds to receive the grace of God. The Pastor, who I am honored to call a friend, included and engaged every person in attendance. His message was simple and straightforward, and easily relate-able to what is important. There is an obvious passion he feels toward his message and those he is delivering it to. I hope he considers this statement as the high compliment I intend it to be: he is serving all folks, even those who otherwise might not feel included, and being a true leader by example.
Today we arrived a little early, with my in-laws there as well. The church prepared an area just off to the side of the sanctuary that would be obscured from Tyler's view most of the service. We listened to some music, sang some hymns, and listened to a terrific quartet. Toward the end of the service Tyler was brought to the front to be Baptized. Pastor Dave talked about how exciting it was to represent Tyler's dedication to God. He talked about how it may have a different meaning for Tyler, and as his brothers and sisters in Christ we are accepting our role in nurturing and loving him in his journey. Tyler smiled as he was anointed and gave himself some applause as he returned to his seat. Many people wiped tears from their eyes as they watched him bask in the love that was around him. It was a powerful experience.
After the service we got to spend some time with Tyler and get some photos. He was very happy to see us and appeared very content to stick around for a little while. Those pictures are below.
On behalf of Tyler and our entire family I would like to thank Pastor Dave for working so hard to make this experience happen just right for Tyler. Words cannot express our gratitude. I would also like to thank Jeff B for coming to be with Tyler and his peers today, we felt that to be a heartfelt gesture. To my in-laws who have always been there for us at every step. And to the entire congregation who cheered and cried with us today. It is a day we will never forget.
Be well and God Bless. Tom
I've not been to a lot of different churches. I have, however, seen very large mega-style churches, small churches, and even the Cathedral at Notre Dame. I have never been more genuinely impressed by a church than I was today. Red Lion Zion doesn't have fancy pews, or a coffee shop, or a pastor who drives a Jaguar. It struck me as a modest dwelling that has just what it needs but not much that it doesn't. What it does have, in an overflowing abundance, is HEART. I saw a congregation full of people that were there because they believe in fellowship in the purist sense. Each one sat with open hearts and minds to receive the grace of God. The Pastor, who I am honored to call a friend, included and engaged every person in attendance. His message was simple and straightforward, and easily relate-able to what is important. There is an obvious passion he feels toward his message and those he is delivering it to. I hope he considers this statement as the high compliment I intend it to be: he is serving all folks, even those who otherwise might not feel included, and being a true leader by example.
Today we arrived a little early, with my in-laws there as well. The church prepared an area just off to the side of the sanctuary that would be obscured from Tyler's view most of the service. We listened to some music, sang some hymns, and listened to a terrific quartet. Toward the end of the service Tyler was brought to the front to be Baptized. Pastor Dave talked about how exciting it was to represent Tyler's dedication to God. He talked about how it may have a different meaning for Tyler, and as his brothers and sisters in Christ we are accepting our role in nurturing and loving him in his journey. Tyler smiled as he was anointed and gave himself some applause as he returned to his seat. Many people wiped tears from their eyes as they watched him bask in the love that was around him. It was a powerful experience.
After the service we got to spend some time with Tyler and get some photos. He was very happy to see us and appeared very content to stick around for a little while. Those pictures are below.
On behalf of Tyler and our entire family I would like to thank Pastor Dave for working so hard to make this experience happen just right for Tyler. Words cannot express our gratitude. I would also like to thank Jeff B for coming to be with Tyler and his peers today, we felt that to be a heartfelt gesture. To my in-laws who have always been there for us at every step. And to the entire congregation who cheered and cried with us today. It is a day we will never forget.
Be well and God Bless. Tom
A Special Message for Tonya
Good afternoon!
It seems over and over I talk about how there are special people that cross our paths every day. It's really a matter of whether we have our hearts open enough to find them.
Today during Tyler's baptism (more on that in the next post) I noticed a young lady who seemed especially touched by the ceremony. I don't think I can adequately describe it but she appeared to have a very personal cord which this had touched. After the conclusion of the service I found her sitting with some family enjoying some refreshments in the church basement. I had to approach her even though she didn't know me from Santa Clause. I won't forget our brief conversation and this message is for her and so many other good folks like her:
I'm humbled to know that this blog means so much to you. The feelings that you have right now about your child's situation is the very inspiration for me to continue on. My wife and I have lived through the very heartbreak that you are experiencing now. YOU ARE NOT ALONE. You might feel terrified about what the future will hold. Your child becoming older, more aggressive, and less engaged is not due to anything you have done wrong. But it hurts. It hurts to feel as though your own child is rejecting you. It hurts to be angry with no one to be angry with. You HAVE to remember that YOU ARE NOT ALONE. Trust that every time you need to find more strength that it will be there somehow, some way. And every time it seems like things get too heavy to carry, someone will help you pick it back up.
Every time you feel like you are struggling I want you to do these 5 things:
- Remember your faith. It will not judge you, leave you, or turn its back on you
- Lean on those who are there for you. Do not consume yourself with those who are negative or make your situation more difficult
- Breathe. You have to find ways to mentally refresh yourself even if its 15 minutes a day
- Give your feelings a voice. Don't be afraid of them or deny them. You may be surprised that things begin to change when they are out in the open.
- Ask for help. Be someone's squeeky wheel. The more involved you feel the better you will feel. Remember nothing changes unless something changes.
Bless you and your entire family. Don't lose hope. There are many of us fighting the good fight right along with you.
Be well and God bless. Tom
Thursday, December 1, 2016
Tyler's Baptism
For anyone that has followed the blog, you know I will write about any subject when it feels relevant. Some of my thoughts and opinions may not be to everyone's taste, but I'd like to think that I am fair and honest about my feelings. Even when the subject is sensitive.
I am very proud to say that Tyler will be baptized this Sunday. We will be there with some of his family members to show our support as he and his church community confirm his walk with God.
Not everyone would agree with this decision, and I respect that. There would be those who would argue that Tyler cannot understand what this means, so it should not be done. Or that Tyler is already a Child of God and that baptizing him is not necessary.
While it's a personal decision, I would like to offer our explanation publicly. Tyler has found many new ways of living over the last year. One of which is that he has become a member of a wonderful church. When I say "member" I mean like a FAMILY member. He is respected and accepted for who he is. He is loved and encouraged by his Pastor and congregation. They have no desire for Tyler to merely "attend", but rather they insist that he be a joyous addition. What an amazing gift to have a Pastor and congregation that are spiritual leaders for our young man. I can think of nothing more appropriate than to have Tyler stand in front of his church community and receive the Lord, even if it is in a symbolic way.
Another point is that we don't truly know what Tyler fully understands and what he doesn't. I can tell you that he understands that he is in the presence of love and grace when he is with his church family. I can tell you that he feels his church is a special place. Whether he "understands" all of the meanings, he certainly understands the feelings. For us, this is more than enough reason.
Do I already feel Tyler is a Child of God? Absolutely. And there is nothing wrong with a Child of God standing in front of those who love him and confirming it. God has smiled upon Tyler many, many times and this Sunday will be no different.
Be well and God bless. Tom
I am very proud to say that Tyler will be baptized this Sunday. We will be there with some of his family members to show our support as he and his church community confirm his walk with God.
Not everyone would agree with this decision, and I respect that. There would be those who would argue that Tyler cannot understand what this means, so it should not be done. Or that Tyler is already a Child of God and that baptizing him is not necessary.
While it's a personal decision, I would like to offer our explanation publicly. Tyler has found many new ways of living over the last year. One of which is that he has become a member of a wonderful church. When I say "member" I mean like a FAMILY member. He is respected and accepted for who he is. He is loved and encouraged by his Pastor and congregation. They have no desire for Tyler to merely "attend", but rather they insist that he be a joyous addition. What an amazing gift to have a Pastor and congregation that are spiritual leaders for our young man. I can think of nothing more appropriate than to have Tyler stand in front of his church community and receive the Lord, even if it is in a symbolic way.
Another point is that we don't truly know what Tyler fully understands and what he doesn't. I can tell you that he understands that he is in the presence of love and grace when he is with his church family. I can tell you that he feels his church is a special place. Whether he "understands" all of the meanings, he certainly understands the feelings. For us, this is more than enough reason.
Do I already feel Tyler is a Child of God? Absolutely. And there is nothing wrong with a Child of God standing in front of those who love him and confirming it. God has smiled upon Tyler many, many times and this Sunday will be no different.
Be well and God bless. Tom
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