Seriously! I don't understand people.
I have written about this before and I will probably have to write about it again.
My husband Andrew is a brain injury survivor. He had a stroke and other brain injury complications from a car accident. He has recovered way past what we have been told what to expect. He tries hard not to let it keep him back and not to use it for any excuse.
But it is there.... and people are jerks. It doesn't matter if you forgot or don't know people are still jerks.
He is a little bit slow, and he hates that. He hates when people make him feel stupid.... because he is not.
He sometimes needs more explanation or for you to repeat it, but not because of what you said, but just for him so he can understand it. And sometimes he forgot what you said or if you answered his question. That is brain injury. You can never be 100% better.
If he asks you a question to clarify, he is not being rude; even if it comes across that way
His brain thinks either on multiple broken tracks or on one straight track that is ridged and makes since and never changes. If he asks he is not questioning you or how you do it in hopes that you change it, or do it his way: you just set up a road block in his brain and he is only trying to make it make sense. Be kind, have patience, explain it and know it still might not make sense..... he may ask again until it makes does. You should not be that way only to him, but to everyone. You would want them to be that way with you, your spouse, your children, your parents....
If you think I am talking about you, you are right. I am talking to EVERYONE. Every person that reads this, every person who wants to talk about this. I hope you or your loves ones never have a severe brain injury, and if they do I hope they can have a phenomenal recovery.... and I hope everyone including you treats them with the respect they deserve.
Tuesday, November 15, 2016
Not again, and I hope it never happens to you.
Seriously! I don't understand people.
I have written about this before and I will probably have to write about it again.
My husband Andrew is a brain injury survivor. He had a stroke and other brain injury complications from a car accident. He has recovered way past what we have been told what to expect. He tries hard not to let it keep him back and not to use it for any excuse.
But it is there.... and people are jerks. It doesn't matter if you forgot or don't know people are still jerks.
He is a little bit slow, and he hates that. He hates when people make him feel stupid.... because he is not.
He sometimes needs more explanation or for you to repeat it, but not because of what you said, but just for him so he can understand it. And sometimes he forgot what you said or if you answered his question. That is brain injury. You can never be 100% better.
If he asks you a question to clarify, he is not being rude; even if it comes across that way
His brain thinks either on multiple broken tracks or on one straight track that is ridged and makes since and never changes. If he asks he is not questioning you or how you do it in hopes that you change it, or do it his way: you just set up a road block in his brain and he is only trying to make it make sense. Be kind, have patience, explain it and know it still might not make sense..... he may ask again until it makes does. You should not be that way only to him, but to everyone. You would want them to be that way with you, your spouse, your children, your parents....
If you think I am talking about you, you are right. I am talking to EVERYONE. Every person that reads this, every person who wants to talk about this. I hope you or your loves ones never have a severe brain injury, and if they do I hope they can have a phenomenal recovery.... and I hope everyone including you treats them with the respect they deserve.
I have written about this before and I will probably have to write about it again.
My husband Andrew is a brain injury survivor. He had a stroke and other brain injury complications from a car accident. He has recovered way past what we have been told what to expect. He tries hard not to let it keep him back and not to use it for any excuse.
But it is there.... and people are jerks. It doesn't matter if you forgot or don't know people are still jerks.
He is a little bit slow, and he hates that. He hates when people make him feel stupid.... because he is not.
He sometimes needs more explanation or for you to repeat it, but not because of what you said, but just for him so he can understand it. And sometimes he forgot what you said or if you answered his question. That is brain injury. You can never be 100% better.
If he asks you a question to clarify, he is not being rude; even if it comes across that way
His brain thinks either on multiple broken tracks or on one straight track that is ridged and makes since and never changes. If he asks he is not questioning you or how you do it in hopes that you change it, or do it his way: you just set up a road block in his brain and he is only trying to make it make sense. Be kind, have patience, explain it and know it still might not make sense..... he may ask again until it makes does. You should not be that way only to him, but to everyone. You would want them to be that way with you, your spouse, your children, your parents....
If you think I am talking about you, you are right. I am talking to EVERYONE. Every person that reads this, every person who wants to talk about this. I hope you or your loves ones never have a severe brain injury, and if they do I hope they can have a phenomenal recovery.... and I hope everyone including you treats them with the respect they deserve.
Sunday, October 30, 2016
Fitting in
For a few months I have been feeling pretty bitter about life, about petty things. Or maybe I just tell myself they are petty so they don't bother me as much.
Some of what I have been feeling has gone on for years, and just resurfaces from time toto time. Other aspects, and probably why I have been bitter and angry are new.
One of the things is feeling like I don't fit in. I also believe in being unique, so this is a huge struggle for me. I think it is natural to want to fit in somewhere.
At times I do fit, mostly I feel like I don't. Instead of being inspired I feel jealous and helpless. Every one says women should help build each other up and sometimes theses very women are the ones bringing me down. Most the time I am sure they don't know, I am sure they don't know I wish I had some aspect of their life, I don't have. But all this is besides the point and probably a different story.
I don't know why I really feel like I don't fit in most the time. I often wonder if people see me how I think they see me.
I miss when Avery was in Kindergarten. The parents all met at pickup and I got to know a lot of them and befriend them. The next year they all moved to the back of the school for pickup and I was still at Kindergarten because I was now picking up Miles. At first I felt left out, I didn't get to talk to the same people. I finally opened up and met new parents. The next year I was picking up Miles with 1st grade and got to talk to the same parents.
This year they bring Miles out by 1st grade, so I don't feel like I get to talk to any of the parent friends I have made. It took me until recently to accept this. Not sure why it was so hard to move past it.
The other thing that has been difficult for me is many of the parents I talked to in Avery's grade back in Kindergarten, have all seemed to form a tight friendship. I am always wondering if I lost out the following year, because I was not at pickup? Did I miss out from lack of trying? Was I too busy with Miles and therapy? Did they just assume I was too busy? Or even though they are nice to me, do they just not like me? Also conflicting because most the time **** I don't care if they like me or not, because I am me and I will not change for them. But from time to time it really pisses me off. And at the same time if things changed and I was accepted I will still feel like I don't fit because I am not like them. I will be too busy and I won't have the time or effort to take care of me how I am.
I also feel like I don't fit in because my child with special needs. Everyone loves Miles, but he is different, we have to do things differently, therefore are we not included? Maybe. Are we included to things? Yes sometimes and every time we try it.
My biggest fear is that Avery is not included because of Miles. I strongly believe Avery should do things with and without Miles.
I do feel included in a small support team of other autism parents. Without them I would be insane. We all have a hard time caring for ourselves and need each other. But we are also busy.
Sorry, I am super upset tonight and can't sleep. My ramblings may or may not make sense.
P.S. I am writing to change me, not you.
Some of what I have been feeling has gone on for years, and just resurfaces from time toto time. Other aspects, and probably why I have been bitter and angry are new.
One of the things is feeling like I don't fit in. I also believe in being unique, so this is a huge struggle for me. I think it is natural to want to fit in somewhere.
At times I do fit, mostly I feel like I don't. Instead of being inspired I feel jealous and helpless. Every one says women should help build each other up and sometimes theses very women are the ones bringing me down. Most the time I am sure they don't know, I am sure they don't know I wish I had some aspect of their life, I don't have. But all this is besides the point and probably a different story.
I don't know why I really feel like I don't fit in most the time. I often wonder if people see me how I think they see me.
I miss when Avery was in Kindergarten. The parents all met at pickup and I got to know a lot of them and befriend them. The next year they all moved to the back of the school for pickup and I was still at Kindergarten because I was now picking up Miles. At first I felt left out, I didn't get to talk to the same people. I finally opened up and met new parents. The next year I was picking up Miles with 1st grade and got to talk to the same parents.
This year they bring Miles out by 1st grade, so I don't feel like I get to talk to any of the parent friends I have made. It took me until recently to accept this. Not sure why it was so hard to move past it.
The other thing that has been difficult for me is many of the parents I talked to in Avery's grade back in Kindergarten, have all seemed to form a tight friendship. I am always wondering if I lost out the following year, because I was not at pickup? Did I miss out from lack of trying? Was I too busy with Miles and therapy? Did they just assume I was too busy? Or even though they are nice to me, do they just not like me? Also conflicting because most the time **** I don't care if they like me or not, because I am me and I will not change for them. But from time to time it really pisses me off. And at the same time if things changed and I was accepted I will still feel like I don't fit because I am not like them. I will be too busy and I won't have the time or effort to take care of me how I am.
I also feel like I don't fit in because my child with special needs. Everyone loves Miles, but he is different, we have to do things differently, therefore are we not included? Maybe. Are we included to things? Yes sometimes and every time we try it.
My biggest fear is that Avery is not included because of Miles. I strongly believe Avery should do things with and without Miles.
I do feel included in a small support team of other autism parents. Without them I would be insane. We all have a hard time caring for ourselves and need each other. But we are also busy.
Sorry, I am super upset tonight and can't sleep. My ramblings may or may not make sense.
P.S. I am writing to change me, not you.
Friday, May 6, 2016
6 years after
In 5 days it will be 6 years since Andrew's accident. Around this time of year I always have waves of mixed emotions. Remembering bits and pieces if that time, when it happened and all the progress and rehabilitation. Thinking of how things are today and what things could have happened v.s. what has happened.
I had actually wanted to write this post in March but I was very busy. I wanted to write this in March because March was TBI Awareness Month.
Five days after Andrew had been hit head-on by a distracted driver he was still in a medically induced coma. Five days after the accident I was graduating from college. I only 'walked' because when I debated whether I was going to he told me I needed to, that I had worked hard to finish.
While listening to graduation speeches my phone rang. I knew it was the hospital so I answered. A nurse has noticed something funny with Andrew's eye so they took him for a CT scan. He had fluid on the brain and had many little mini strokes. They were asking my permission to place a monitor in his head to watch the fluid.
The CT showed mini strokes caused by fat embolisms and also some trauma from the accident. There was no way to know how this damage would affect him if and when he would wake up. He was very slow to wake from the coma. We were told his outcome didn't look good many times starting with he may never come to or he may need long term care. In fact the day he 'woke up' his parents and I had an appointment to look at a long-term care facility.
When he first woke his short term memory was horrible and long term memory was gapped and jumbled. He still was hospitalized could not get out of bed, feed himself, walk, and do self care. With therapies and medical intervention ( and tremendous will power) he has proven most predictions wrong.
Fast forward to today. This is why I even want to write. Andrew's recovery is remarkable beyond what we were told to expect. Many people meeting him the 1st 2nd or more might not even realize he has a brain injury. His brain did a great rewiring. He is very close to who is was before the accident..... but he is not.....
More and more lately the 'what he was and now is' has been getting to me. I see it a lot; with strangers and acquaintances. His brain takes longer to process. Longer to take in information and longer to get his thoughts out. People don't have the patience to wait for him, people are rude and only because is is a little slower. He is not slow enough for people to realize what is going on and just slow enough to annoy them in their fast paced world.
I have been thinking about this after several comments about how much patience I have with him. Most the time I am patience is something I am good at. But to be honest I am not always this way. I have to try really hard with him. Often times he still doesn't remember thing, things Ihave said, things he has already toltold me. Many times I get annoyed and even a little pissed that he forgot what I said. I have to remind myself that he was most likely listening but doesn't remember and sometimes it is the 3rd time I have told him.
His brain injury also has trained him to do things in specific ways, to find what works for him over and over. People that don't understand think what not does is ridiculous. They don't understand.
I guess there is good and bad things about how well he has recovered.
I leave this long post reminding you not to be on your phone while driving. It is not worth it.
I had actually wanted to write this post in March but I was very busy. I wanted to write this in March because March was TBI Awareness Month.
Five days after Andrew had been hit head-on by a distracted driver he was still in a medically induced coma. Five days after the accident I was graduating from college. I only 'walked' because when I debated whether I was going to he told me I needed to, that I had worked hard to finish.
While listening to graduation speeches my phone rang. I knew it was the hospital so I answered. A nurse has noticed something funny with Andrew's eye so they took him for a CT scan. He had fluid on the brain and had many little mini strokes. They were asking my permission to place a monitor in his head to watch the fluid.
The CT showed mini strokes caused by fat embolisms and also some trauma from the accident. There was no way to know how this damage would affect him if and when he would wake up. He was very slow to wake from the coma. We were told his outcome didn't look good many times starting with he may never come to or he may need long term care. In fact the day he 'woke up' his parents and I had an appointment to look at a long-term care facility.
When he first woke his short term memory was horrible and long term memory was gapped and jumbled. He still was hospitalized could not get out of bed, feed himself, walk, and do self care. With therapies and medical intervention ( and tremendous will power) he has proven most predictions wrong.
Fast forward to today. This is why I even want to write. Andrew's recovery is remarkable beyond what we were told to expect. Many people meeting him the 1st 2nd or more might not even realize he has a brain injury. His brain did a great rewiring. He is very close to who is was before the accident..... but he is not.....
More and more lately the 'what he was and now is' has been getting to me. I see it a lot; with strangers and acquaintances. His brain takes longer to process. Longer to take in information and longer to get his thoughts out. People don't have the patience to wait for him, people are rude and only because is is a little slower. He is not slow enough for people to realize what is going on and just slow enough to annoy them in their fast paced world.
I have been thinking about this after several comments about how much patience I have with him. Most the time I am patience is something I am good at. But to be honest I am not always this way. I have to try really hard with him. Often times he still doesn't remember thing, things Ihave said, things he has already toltold me. Many times I get annoyed and even a little pissed that he forgot what I said. I have to remind myself that he was most likely listening but doesn't remember and sometimes it is the 3rd time I have told him.
His brain injury also has trained him to do things in specific ways, to find what works for him over and over. People that don't understand think what not does is ridiculous. They don't understand.
I guess there is good and bad things about how well he has recovered.
I leave this long post reminding you not to be on your phone while driving. It is not worth it.
Friday, April 29, 2016
Why I don't 'like' the video of the boy at the concert.
There is a video going around the internet of a little boy with autism crying at a Coldplay concert.
When I first saw the video I thought 'wow, how sweet' and I may have 'liked' the video on a page or two.
However like most feel good stories about people with autism multiple people started taging me or posting it to my page. It is not that I don't like feel good stories or stories about Autism..... but you see if you have seen it I have seen if on 4 different sites I follow and then some.
Ok back to the little boy seeing Coldplay live. After the video was posted to my wall 5 times.... yes 5.... I took the message as 'look, here is a child like your child. You have a child with autism like this boy.' So I watched it again looking at this boy as if he were mine and I didn't like it. Not because I am not really a Coldplay fan or anything. If I knew Miles loved Coldplay and wanted to see them I would take him.
When most people see the look on the boy's face they see his pure emotion. What I see is the start of sensory overload. I start to feel anxious looking at this boy. I am waiting for him to completely loose it, have a meltdown and try to run away. "But he loves Coldplay!" you tell me. Yes he does, I can see that too. I don't know this little boy. He may have more control than mine. Maybe his dad hugging him and singing to him helps him regulate.
I see a look I have seen on Miles before, but usually it doesn't go so well for Miles. One example is Miles' love for the movie Cars. One day he handed me the movie and I started it in the DVD player. The movie started and he got excited, beyond excited, like it was the best thing in the world. All of the sudden he pure joy turned into crying, but looked 'joyous'. Then he lost it! Started melting down, jumping screaming, hitting himself on the head. He could not regulate his emotions and looked scared. I turned it off and calmed him down.
When I first saw the video I thought 'wow, how sweet' and I may have 'liked' the video on a page or two.
However like most feel good stories about people with autism multiple people started taging me or posting it to my page. It is not that I don't like feel good stories or stories about Autism..... but you see if you have seen it I have seen if on 4 different sites I follow and then some.
Ok back to the little boy seeing Coldplay live. After the video was posted to my wall 5 times.... yes 5.... I took the message as 'look, here is a child like your child. You have a child with autism like this boy.' So I watched it again looking at this boy as if he were mine and I didn't like it. Not because I am not really a Coldplay fan or anything. If I knew Miles loved Coldplay and wanted to see them I would take him.
When most people see the look on the boy's face they see his pure emotion. What I see is the start of sensory overload. I start to feel anxious looking at this boy. I am waiting for him to completely loose it, have a meltdown and try to run away. "But he loves Coldplay!" you tell me. Yes he does, I can see that too. I don't know this little boy. He may have more control than mine. Maybe his dad hugging him and singing to him helps him regulate.
I see a look I have seen on Miles before, but usually it doesn't go so well for Miles. One example is Miles' love for the movie Cars. One day he handed me the movie and I started it in the DVD player. The movie started and he got excited, beyond excited, like it was the best thing in the world. All of the sudden he pure joy turned into crying, but looked 'joyous'. Then he lost it! Started melting down, jumping screaming, hitting himself on the head. He could not regulate his emotions and looked scared. I turned it off and calmed him down.
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