In the previous entries we talked about the background of Ty's aggression as well as the affect those behaviors had on all of us. In this entry I would like to talk about some of the things we did right, and some of the things we did wrong during all of these years.
Granted, its easy to use those words now "right" and "wrong". At the time we were simply trying to survive the day with nobody getting hurt. Much of that involved carefully crafting the world around him to avoid his triggers. This could get to be a very exhausting effort. In our defense, I think we were always trying to make decisions through his point of view. Regardless of the situation we would say "how will Tyler do with this". Whether planning a vacation, buying a house, or moving a piece of furniture, it was priority number one.
I ask myself now....was that actually the right thing to do? Sure it made things "easier" for Tyler which in fact made things more comfortable for us, but did it also allow him to become too much of a creature of habit. Did he come to expect that he could rely on his comforts and not have to develop ways to manage his anxiety about new things? In retrospect I believe we should have been pushing his boundaries more.
We can think back to his school days. There was often discussion as to whether Tyler should remain with his classroom and his teacher (Miss Sue) year after year, or if he should be moved into different classrooms in order to broaden his experiences in school. We knew we had a wonderful, protective, and loving teacher already so there was no way we would give her up. Tyler respected her and loved her like another parent. So in that respect there was no question that he was safe and loved. The counter argument had its merit as well. Perhaps he was not allowed to get used to being handled by other teachers so long as we kept him in that class. On this one I think I would do it the same way all over again. His school years are good memories for him and for us and many special needs kids unfortunately can't say the same thing.
But we did make mistakes for sure. I was guilty of allowing Tyler to see me as his primary caregiver and not allowing Robin to do the same. Whenever there was conflict I whisked him away and calmed him down. In my frustration I would critique Robin on how she could have avoided the situation. Even though I was trying to make things better I was doing the opposite. I made Robin feel incompetent and I didn't empower her. I also made Tyler feel like I was the only one who could make things better for him. My intentions were right but I was hurting everyone.
I think Robin would agree that in the early years she would have wanted to be more assertive with him. She often got her feeling hurt by his behavior (which who could blame her) and allowed that to show to him. This actually affirmed to him that she was a viable target of aggression. Trying not to take things personally was an extremely difficult thing for her to do. To her credit, she did work harder on this toward his later years with us, and their relationship had improved significantly in that regard.
I do think back on these things. But I remind myself that when you are in the "thick of the battle" you are only able to get through that minute, that hour, that day. There is no perfect solution to any of the issues above. Emotions get in the way, life gets in the way. If you feel as though you are doing the best you can, that is all you can ask of yourself.
I will wrap up this subject in the next post with just a summary and some additional thoughts.
Be well and God Bless. Tom
Friday, January 20, 2017
Wednesday, January 18, 2017
Aggression Part 2
In my last entry I explained how Tyler's aggression generally works. Today's entry will deal with the ramifications all of us experienced and continue to experience.
First I want to add a disclaimer. We have never believed that Tyler wants to hurt anyone, especially us. His aggression, we believe, has been rooted in his inability to communicate and process how he feels. It has never caused us to admire him or love him any less.
With that said, there are very few things more emotionally devastating than having your loved one become physical or verbally violent against you. Knowing that the one you are caring for is not able to comprehend the effects of their actions is of little solace. Its something that we can rationalize all we want, but feeling it is an entirely different matter.
In our house, my wife was the primary recipient of Tyler's aggression for years. I look back and I feel just terrible about that. She dreaded my business trips because she knew it could turn into a very bad time. I was helpless because I had to earn a living so I felt like I had little choice in the matter. My work days were spent holding my breath and looking at my watch....finally able to breathe when I knew Tyler was likely in bed for the night. I dreaded calling home for fear of hearing the bad news about what I was missing. I felt guilty about not being there to help, and in fact likely causing more aggression with my absence. I felt inadequate as a provider and a protector. I was frustrated that as bad as it was to be on the road, it was worse to have to always hear about the problems at home. It made me feel alone and defeated. There were times I felt like quitting, and almost did.
It was 10 times worse for Robin. She had to endure the anxiety of knowing I would always have another trip coming up. Even when I didn't travel, Tyler would find reasons to sneak in a kick to the shin or a punch to the arm. She never asked for or deserved a single one of these actions. There were times that the bruises on her forearms (and she does naturally bruise easily) made strangers wonder if she was being beaten at home. She had to take our daughter to a relative's or friend's house each night when I traveled because it wasn't safe for Sam to be with them without me there. She had to be on edge in a much different way.
Sam was also effected by the aggression. It still is hard for her to understand why we had to protect her from her own brother. She beams from ear to ear when she sees him but the feeling is not mutual. When Tyler would head in her direction she had to duck out of sight so he wouldn't get angry. It put extra stress on her and it took her a few months after he moved away to realize she was free to move about without worry.
Tyler suffered too. You could see that he very much disliked feeling that way. He hangs his head when he strikes out at someone or something. He loves to smile and be happy, but when he would be in a darker place you could read it all over his face. He wasn't happy, which made him aggressive, which made him unhappy, and so on.
The aggression was a battle we were all losing and we were all at serious risk in different ways. All of us were battling forms of depression and/or anxiety that was doing nothing but fueling the fire. I would look at Tyler and silently plead with him that if he could just learn to live happily without the violence we would all stay together for many years. To me it felt like a "simple" thought and yet knowing that its far more complex. There was no pill to fix it, no magic words, no secret technique. As the years continued we felt as though our little boy who loved to give massive hugs had slipped further away.
Aggression, whether by a child on the spectrum, or a parent with dementia, is frightening, isolating, and dangerous. Not only can the aggressor do damage to property or other people, but it lands them at risk for being abused by others in retaliation. This aspect must be handled with the help of professionals. You cannot retreat and suffer in silence due to feeling guilty or ashamed. There are medications, therapies, etc. that can help in the short term, and help open possibilities for the long term. If you are experiencing this situation you need to reach out and seek help for yourself and your loved one. Neither of you will survive the long term unless the situation is addressed.
In the next entry I will address the things we did right, and what we did wrong, in how we dealt with our own circumstances.
Be well and God bless. Tom
First I want to add a disclaimer. We have never believed that Tyler wants to hurt anyone, especially us. His aggression, we believe, has been rooted in his inability to communicate and process how he feels. It has never caused us to admire him or love him any less.
With that said, there are very few things more emotionally devastating than having your loved one become physical or verbally violent against you. Knowing that the one you are caring for is not able to comprehend the effects of their actions is of little solace. Its something that we can rationalize all we want, but feeling it is an entirely different matter.
In our house, my wife was the primary recipient of Tyler's aggression for years. I look back and I feel just terrible about that. She dreaded my business trips because she knew it could turn into a very bad time. I was helpless because I had to earn a living so I felt like I had little choice in the matter. My work days were spent holding my breath and looking at my watch....finally able to breathe when I knew Tyler was likely in bed for the night. I dreaded calling home for fear of hearing the bad news about what I was missing. I felt guilty about not being there to help, and in fact likely causing more aggression with my absence. I felt inadequate as a provider and a protector. I was frustrated that as bad as it was to be on the road, it was worse to have to always hear about the problems at home. It made me feel alone and defeated. There were times I felt like quitting, and almost did.
It was 10 times worse for Robin. She had to endure the anxiety of knowing I would always have another trip coming up. Even when I didn't travel, Tyler would find reasons to sneak in a kick to the shin or a punch to the arm. She never asked for or deserved a single one of these actions. There were times that the bruises on her forearms (and she does naturally bruise easily) made strangers wonder if she was being beaten at home. She had to take our daughter to a relative's or friend's house each night when I traveled because it wasn't safe for Sam to be with them without me there. She had to be on edge in a much different way.
Sam was also effected by the aggression. It still is hard for her to understand why we had to protect her from her own brother. She beams from ear to ear when she sees him but the feeling is not mutual. When Tyler would head in her direction she had to duck out of sight so he wouldn't get angry. It put extra stress on her and it took her a few months after he moved away to realize she was free to move about without worry.
Tyler suffered too. You could see that he very much disliked feeling that way. He hangs his head when he strikes out at someone or something. He loves to smile and be happy, but when he would be in a darker place you could read it all over his face. He wasn't happy, which made him aggressive, which made him unhappy, and so on.
The aggression was a battle we were all losing and we were all at serious risk in different ways. All of us were battling forms of depression and/or anxiety that was doing nothing but fueling the fire. I would look at Tyler and silently plead with him that if he could just learn to live happily without the violence we would all stay together for many years. To me it felt like a "simple" thought and yet knowing that its far more complex. There was no pill to fix it, no magic words, no secret technique. As the years continued we felt as though our little boy who loved to give massive hugs had slipped further away.
Aggression, whether by a child on the spectrum, or a parent with dementia, is frightening, isolating, and dangerous. Not only can the aggressor do damage to property or other people, but it lands them at risk for being abused by others in retaliation. This aspect must be handled with the help of professionals. You cannot retreat and suffer in silence due to feeling guilty or ashamed. There are medications, therapies, etc. that can help in the short term, and help open possibilities for the long term. If you are experiencing this situation you need to reach out and seek help for yourself and your loved one. Neither of you will survive the long term unless the situation is addressed.
In the next entry I will address the things we did right, and what we did wrong, in how we dealt with our own circumstances.
Be well and God bless. Tom
Tuesday, January 17, 2017
Aggression Part 1
My last entry touched a little on aggression and the effects it has on the entire family. Its hard to imagine anything more difficult to cope with than the physical and emotional pain of a loved one striking out at those that devote themselves to them. This will be a series of entries devoted to this subject. This entry will give some general background on our struggle with Tyler's aggressive behaviors.
Tyler's aggression began to show itself around the age of 3. He could be self-injurious by banging his head when he would get upset or frustrated. He would also swing his arms or kick his feet when he would want to communicate his displeasure with something. In some respects it was a very impulsive behavior driven by his lack of verbal skills and ability to process his emotions. In other respects there was calculation in how he chose to carry out his aggression. There were triggers that you could predict from a mile away, and yet there was unpredictability of aggression that happened with little warning. The predictable triggers could be; cutting food in front of him, walking away from him unexpectedly, waiting in a line, the dogs eating where he could see them, and picking something up from the floor in front of him. But many other triggers gave us no warning at all.
Tyler also chose where his aggression would be targeted. He preferred to be aggressive toward people with quieter personalities. Anyone who showed apprehension would be particularly in danger. Children and pets would also be easy targets for him. This always made me nervous when there were little ones or elderly people in his path. Conversely, people with "type A" personalities, or people that showed him that they were not impressed by his aggression were rarely the recipients of it. If you appeared to be animated, fearless, and bold, Tyler would be drawn to you and aggression would be non-existent.
As Tyler got older the aggression became more difficult to handle. Much of that is a simple result of his increase in size and strength. He also became more unpredictable the older he got. His mood swings also seemed to influence him in a much more profound way as he went through his teen years.
Fortunately now that he is comfortable in his residential surroundings the aggression has been quite manageable. The unpredictability is still there, and incidents can happen, but overall he has been doing well. The staff still has to know his current triggers.
In the next entry I will address the emotional effects it had on us as individuals and as a family.
Be well and God bless. Tom
Tyler's aggression began to show itself around the age of 3. He could be self-injurious by banging his head when he would get upset or frustrated. He would also swing his arms or kick his feet when he would want to communicate his displeasure with something. In some respects it was a very impulsive behavior driven by his lack of verbal skills and ability to process his emotions. In other respects there was calculation in how he chose to carry out his aggression. There were triggers that you could predict from a mile away, and yet there was unpredictability of aggression that happened with little warning. The predictable triggers could be; cutting food in front of him, walking away from him unexpectedly, waiting in a line, the dogs eating where he could see them, and picking something up from the floor in front of him. But many other triggers gave us no warning at all.
Tyler also chose where his aggression would be targeted. He preferred to be aggressive toward people with quieter personalities. Anyone who showed apprehension would be particularly in danger. Children and pets would also be easy targets for him. This always made me nervous when there were little ones or elderly people in his path. Conversely, people with "type A" personalities, or people that showed him that they were not impressed by his aggression were rarely the recipients of it. If you appeared to be animated, fearless, and bold, Tyler would be drawn to you and aggression would be non-existent.
As Tyler got older the aggression became more difficult to handle. Much of that is a simple result of his increase in size and strength. He also became more unpredictable the older he got. His mood swings also seemed to influence him in a much more profound way as he went through his teen years.
Fortunately now that he is comfortable in his residential surroundings the aggression has been quite manageable. The unpredictability is still there, and incidents can happen, but overall he has been doing well. The staff still has to know his current triggers.
In the next entry I will address the emotional effects it had on us as individuals and as a family.
Be well and God bless. Tom
Monday, January 16, 2017
Tyler Ups and Downs
When you are the caregiver of a special needs person there is an undeniable truth that will continually come to the forefront....there are going to be ups and downs.
Yesterday we were attending church when Tyler and his staffer arrived and took their usual place toward the back of the sanctuary. He appeared to be in a good mood as he was smiling and acknowledging others. Robin, Sam, and I remained toward the front of the room so as to not distract him during the service. As usual the service was filled with friendly fellowship, a thoughtful message, and music coming from the heart. It is a congregation that embraces the loud chatters of its special needs participants. It also welcomes good humor, tears, and hugs.
At the conclusion of the service I'm sure Tyler was eager to duck out the side door as he usually does. After all, an hour for him, doing anything, is his limit. Instead, his staffer moved him toward us. I suppose being excited to see him I rushed up on him a bit quickly and gave him a hug, which seemed to surprise him a little. The combination of being surprised and being pulled in a direction opposite of the door wasn't sitting well with him and we decided to just allow him to go on his way.
I watched him as he walked out the door with his staffer. He was once again happy to be on his way, heading back to his routine. At that very moment he needed what is now familiar to him. This time it was me who invaded his space. On this occasion we just needed to say goodbye and let him do his thing. It wasn't the reality I wanted to confront in that moment but he needs his security and routine far more than he needs any single person...even me.
It seems to be a universal thing with special needs, you never quite know what you will get on any given day or any given situation. No matter how much I know this to be true, I couldn't help but respond to the way I was feeling at the time. It was disappointing to have it turn out differently than I was hoping for, but I do understand. It has to be about what Tyler needs in order to be happy and comfortable. That certainly doesn't mean I don't feel the sting of what that reality means, its just how I choose to deal with it.
I'm sure there are readers that have a parent with dementia who are coping with those bad days where they don't recognize who they are. And others who have special needs children that struggle with days of aggressive and disrespectful behavior. We don't ever get used to that pain so we have to find ways of rationalizing it. It leaves us hurt and asking questions that likely have no answers. What could possibly feel worse than someone you have loved and have known for so long not knowing who you are or wanting you to be there?
What I find to be the key thing to do is to manage your expectations when you can. Understand the situation and consider the best case and the worst case scenario. Enter the situation in a fairly neutral state of mind and then gauge how the situation is playing out. If its one of the good days you can increase the interaction. If its one of the bad days, you can consider have shorter and less intensive interaction. Applying this approach can save stress for the other person, and manage the stress for the caregiver involved.
One last point, this is where support groups, therapy, church, family, and friends are SO important. The emotions to this level of care are more than most people can handle without means of support. While it may feel like you are "handling it" at the time, the lasting effects are accumulating and festering deep inside, and they will find a way to cause havoc somewhere down the road.
Be well and God bless. Tom
Yesterday we were attending church when Tyler and his staffer arrived and took their usual place toward the back of the sanctuary. He appeared to be in a good mood as he was smiling and acknowledging others. Robin, Sam, and I remained toward the front of the room so as to not distract him during the service. As usual the service was filled with friendly fellowship, a thoughtful message, and music coming from the heart. It is a congregation that embraces the loud chatters of its special needs participants. It also welcomes good humor, tears, and hugs.
At the conclusion of the service I'm sure Tyler was eager to duck out the side door as he usually does. After all, an hour for him, doing anything, is his limit. Instead, his staffer moved him toward us. I suppose being excited to see him I rushed up on him a bit quickly and gave him a hug, which seemed to surprise him a little. The combination of being surprised and being pulled in a direction opposite of the door wasn't sitting well with him and we decided to just allow him to go on his way.
I watched him as he walked out the door with his staffer. He was once again happy to be on his way, heading back to his routine. At that very moment he needed what is now familiar to him. This time it was me who invaded his space. On this occasion we just needed to say goodbye and let him do his thing. It wasn't the reality I wanted to confront in that moment but he needs his security and routine far more than he needs any single person...even me.
It seems to be a universal thing with special needs, you never quite know what you will get on any given day or any given situation. No matter how much I know this to be true, I couldn't help but respond to the way I was feeling at the time. It was disappointing to have it turn out differently than I was hoping for, but I do understand. It has to be about what Tyler needs in order to be happy and comfortable. That certainly doesn't mean I don't feel the sting of what that reality means, its just how I choose to deal with it.
I'm sure there are readers that have a parent with dementia who are coping with those bad days where they don't recognize who they are. And others who have special needs children that struggle with days of aggressive and disrespectful behavior. We don't ever get used to that pain so we have to find ways of rationalizing it. It leaves us hurt and asking questions that likely have no answers. What could possibly feel worse than someone you have loved and have known for so long not knowing who you are or wanting you to be there?
What I find to be the key thing to do is to manage your expectations when you can. Understand the situation and consider the best case and the worst case scenario. Enter the situation in a fairly neutral state of mind and then gauge how the situation is playing out. If its one of the good days you can increase the interaction. If its one of the bad days, you can consider have shorter and less intensive interaction. Applying this approach can save stress for the other person, and manage the stress for the caregiver involved.
One last point, this is where support groups, therapy, church, family, and friends are SO important. The emotions to this level of care are more than most people can handle without means of support. While it may feel like you are "handling it" at the time, the lasting effects are accumulating and festering deep inside, and they will find a way to cause havoc somewhere down the road.
Be well and God bless. Tom
Thursday, January 12, 2017
ATTENTION!! IMPORTANT!!!
Good Afternoon!!
I need your help. More than that....a special family needs your help.
There is a boy here in my hometown that is about to turn 13 named Zachary Foller. Zach has been recently diagnosed as autistic. This young man has the idea that most people don't care about his birthday. We know better don't we?!?
I want to help get Zachary a full mailbox for his birthday. He needs the simple gift of people from all over the country and all over the world sending him love. A postcard or a birthday card....store bought or homemade. Just imagine if he gets cards from different states and different countries! He loves things having to do with the weather so use that idea!
PLEASE.....you can provide an amazing gift to this young man. This is how we change the world.....one kind selfless act at a time. NO child, special needs or not, should ever feel as though people don't care about his birthday.
And a special shout out to his Mom for doing whatever she has to do to make her son's life special. You are what this blog is all about!
If you want to read the local article the link is:
http://www.ydr.com/story/news/2017/01/12/dover-mom-wont-let-her-autistic-son-suffer-another-heartbreaking-birthday/96499518/
Send your birthday wishes to:
Zachary Foller
4550 Bull Road Lot 21
Dover, Pa. 17315
I need your help. More than that....a special family needs your help.
There is a boy here in my hometown that is about to turn 13 named Zachary Foller. Zach has been recently diagnosed as autistic. This young man has the idea that most people don't care about his birthday. We know better don't we?!?
I want to help get Zachary a full mailbox for his birthday. He needs the simple gift of people from all over the country and all over the world sending him love. A postcard or a birthday card....store bought or homemade. Just imagine if he gets cards from different states and different countries! He loves things having to do with the weather so use that idea!
PLEASE.....you can provide an amazing gift to this young man. This is how we change the world.....one kind selfless act at a time. NO child, special needs or not, should ever feel as though people don't care about his birthday.
And a special shout out to his Mom for doing whatever she has to do to make her son's life special. You are what this blog is all about!
If you want to read the local article the link is:
http://www.ydr.com/story/news/2017/01/12/dover-mom-wont-let-her-autistic-son-suffer-another-heartbreaking-birthday/96499518/
Send your birthday wishes to:
Zachary Foller
4550 Bull Road Lot 21
Dover, Pa. 17315
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