Hearts are funny in a way. They can break a million times. They can shatter into tiny fragments so sharp that you feel like you can't breath, and that your chest is being stabbed in a million places. It's funny how your heart can break into all those tiny pieces, but still be whole. It still beats.
I don't know how many times my heart can break for J. His brother got an invitation to a birthday party today. He frequently gets invites to things. J knows this. He said, "You know how C gets invited to things all the time? How come I don't?" I tried to stay strong, and as tears filled my eyes, I said, "Well, kids invite different kids, but you will have your birthday party in January."
He said, "But Mom, that's not being invited. It's not like you get invited to your own birthday party."
What do you say to that? What do you say to a nine year old who hangs his head and asks those questions? If you have the answers, please tell me, because I have no idea. I know he's not perfect, but its devastating to watch all the other kids with their friends. I want so badly for him to find a friend. If I could find a genie in a lamp and rub it, my only wish would be that he could be accepted. I don't want him to change. I love him the way that he is. But, I want for him to be accepted by his peers.
Wednesday, August 17, 2011
Sunday, July 31, 2011
The countdown begins
I keep coming here and writing posts, only to delete them halfway through. I am constantly writing about my fears, and it gets tiresome.
Another couple of weeks, and it will be time for school to start. Another year, bright, shiny, and new waits for us. I think that this year will be better than the last. Toward the end of the year last year, we changed doctors, and it was a good change. He made several med changes, actually reducing the meds that J is on, and taking away the ones that weren't doing anything for him. I won't get into a slam about the previous doctor. I think that he was doing what was necessary to get through his day. But it wasn't helping us get through our day.
J got to spend the afternoon with friends the other day. It was amazing. He rarely gets invited to anything, and to have someone want him to come over, and spend a whole afternoon with him was wonderful. Little brother got to go too, and they spent the afternoon at the pool, and then at the friend's house, before heading to VBS.
The next couple of days after it have been pretty rough though. It was another one of those things that we deal with. Days before and after an event leave J wound up and really hard to deal with. That, combined with school getting ready to start has made us all cranky. :)
Another couple of weeks, and it will be time for school to start. Another year, bright, shiny, and new waits for us. I think that this year will be better than the last. Toward the end of the year last year, we changed doctors, and it was a good change. He made several med changes, actually reducing the meds that J is on, and taking away the ones that weren't doing anything for him. I won't get into a slam about the previous doctor. I think that he was doing what was necessary to get through his day. But it wasn't helping us get through our day.
J got to spend the afternoon with friends the other day. It was amazing. He rarely gets invited to anything, and to have someone want him to come over, and spend a whole afternoon with him was wonderful. Little brother got to go too, and they spent the afternoon at the pool, and then at the friend's house, before heading to VBS.
The next couple of days after it have been pretty rough though. It was another one of those things that we deal with. Days before and after an event leave J wound up and really hard to deal with. That, combined with school getting ready to start has made us all cranky. :)
Sunday, June 26, 2011
In my dreams
In my dreams, my town would have a place for parents of children with autism and aspergers to gather today. Maybe it should be a place for all parents of special needs children to gather, because I think all of us can understand what it's like to parent a child who doesn't fit the mold. We would have a soda, or coffee and eat little treats and relax with each other. We would talk about our joys and our frustrations. We would talk about our fears.
We've had a phenomenon the last few days. J was playing on the playground while his brother was playing baseball. David and I were watching when we noticed that he was teeter tottering with a girl about his age. This went on for SEVERAL minutes! I was so excited. They walked around together the ENTIRE game!!! Most do not realize what a MONUMENTAL event this was. He even let her talk, and he LISTENED! I know there's a lot of all caps here, but that's how exciting it was. He got along with someone for an hour.
He's been working hard on a book that I bought him, working on fourth grade skills. Jackson is a prime example of why No Child Left Behind makes me angry. He's been working on this book, and doing a wonderful job on the Math, and most of the English. . However, he hit the section dealing with figurative language. J is a child who does not get sarcasm. He does not get figurative language. I don't know that he ever will. He is literal. He was working on a page of personification. Things like fog hugging the ground and stuff like that. We tried and tried on that page. It makes NO sense to him. So, I cannot imagine that he's ever going to be able to test successfully on a test about something that I doubt he will ever understand. I don't know. Maybe he can memorize what the things mean. but I don't know that they will ever make sense to him. We will see. He took the state test for the first time this year, I am anxious to see how he performed on it when the results come back. I'm not anxious because I think the test means anything, really. I am anxious, because the state will judge MY child's intelligence and ability on one test.
We've had a phenomenon the last few days. J was playing on the playground while his brother was playing baseball. David and I were watching when we noticed that he was teeter tottering with a girl about his age. This went on for SEVERAL minutes! I was so excited. They walked around together the ENTIRE game!!! Most do not realize what a MONUMENTAL event this was. He even let her talk, and he LISTENED! I know there's a lot of all caps here, but that's how exciting it was. He got along with someone for an hour.
He's been working hard on a book that I bought him, working on fourth grade skills. Jackson is a prime example of why No Child Left Behind makes me angry. He's been working on this book, and doing a wonderful job on the Math, and most of the English. . However, he hit the section dealing with figurative language. J is a child who does not get sarcasm. He does not get figurative language. I don't know that he ever will. He is literal. He was working on a page of personification. Things like fog hugging the ground and stuff like that. We tried and tried on that page. It makes NO sense to him. So, I cannot imagine that he's ever going to be able to test successfully on a test about something that I doubt he will ever understand. I don't know. Maybe he can memorize what the things mean. but I don't know that they will ever make sense to him. We will see. He took the state test for the first time this year, I am anxious to see how he performed on it when the results come back. I'm not anxious because I think the test means anything, really. I am anxious, because the state will judge MY child's intelligence and ability on one test.
Monday, June 20, 2011
How did I miss that?
Sometimes I have to smile a little over the things that happen in our lives. We went to the bank the other day, and it has a little play area for small children. J and his brother set to playing in it. It's a small table with blocks on it. I finished my transaction and called for the boys to come along. Without even turning his head, J gave me one of those "just a minutes" that he is famous for. As I blew out a sigh of frustration, I decided that I would walk over to quietly try to hurry him along and not make a scene.
As I walked over he again told me to wait a minute, so I decided that I would The money in my hand was going straight to the contractor anyway, so I was in no immediate hurry to pay a bill. Finally, he was finished. He was determined that he put every block over on the side with the numbers, and then put the numbers in order, together. all the 1s, then the 2s, then 3s, etc. Then, he had to go down the line and read each one out loud to me.
As I listened to him do all of this, I thought to myself, how did I ever miss the signs? I had to chuckle a little to myself at that thought.
Things have been pretty mellow the last few weeks. I say that and the world will come crashing down, lol. His doctor continues to impress me with his caring and ability. I think that we struck the jackpot with him. He has completely readjusted J's meds. Took him off of the things that weren't working and were doing no good. He takes the time to research, and to do what's best for Jackson. His previous doc just kept piling meds on him with no real attempt to see what was working and what wasn't. We would go in and when I would try to explain what was going on, he would up a med and walk out of the room. But, summer is flying by and fourth grade is approaching. I don't know how he feels about it, but I am terrified. :) He will have a teacher that I feel will be wonderful, but the older he gets, the harder it seems to be.
As I walked over he again told me to wait a minute, so I decided that I would The money in my hand was going straight to the contractor anyway, so I was in no immediate hurry to pay a bill. Finally, he was finished. He was determined that he put every block over on the side with the numbers, and then put the numbers in order, together. all the 1s, then the 2s, then 3s, etc. Then, he had to go down the line and read each one out loud to me.
As I listened to him do all of this, I thought to myself, how did I ever miss the signs? I had to chuckle a little to myself at that thought.
Things have been pretty mellow the last few weeks. I say that and the world will come crashing down, lol. His doctor continues to impress me with his caring and ability. I think that we struck the jackpot with him. He has completely readjusted J's meds. Took him off of the things that weren't working and were doing no good. He takes the time to research, and to do what's best for Jackson. His previous doc just kept piling meds on him with no real attempt to see what was working and what wasn't. We would go in and when I would try to explain what was going on, he would up a med and walk out of the room. But, summer is flying by and fourth grade is approaching. I don't know how he feels about it, but I am terrified. :) He will have a teacher that I feel will be wonderful, but the older he gets, the harder it seems to be.
Friday, June 3, 2011
Today is not good.
Today is not going to be a positive or upbeat post, so if that's what you are looking for, walk away.. I don't mean that in a hateful way, but I feel like my heart is shattered into a million little pieces tonight.
J has been involved in sports from day one. Ever since he was old enough to join baseball and soccer (which is mostly the only sports around here) he has been on a team. He has loved it, and he has excelled at it. He zips up and down the soccer field, and he lives for it. He was an amazing catcher, with strong hits.
But it's all over. A switch seems to have flicked in him the last year that has turned him from a sunny, happy child into a sobbing time bomb waiting to go off. I have literally sat at every single baseball practice and game holding my breath, praying that it wouldn't ignite, just this once. Every single time he has exploded into a crying, sobbing, heaving mass of self-doubt and self-loathing. I don't know how to make him stop. I don't know what to do.
We have been to therapy and been to therapy. We have changed the meds, we have seen the doc. Doc says drama will more than likely always be a part of his life. How is he supposed to lead a life like this? Is it hormones starting to kick in? Will he always be like this? Will he be able to be an adult on his own?
Every time he strikes out, or even just hits incorrectly, he stomps off the field into the dugout and sobs like his best friend just died. Even being walked is not good enough. We can't encourage him without him freaking out more. We can't be stern. We can't do anything with him when he gets like this. He even did this at practice when something didn't go his way. Then, because he wasn't on a normal bedtime schedule, the next day was rough.
Tonight he was sobbing that he wanted to quit and was hysterical.
So D and I made the decision to pull him out of baseball. It was about more than I could bear. It wasn't that I am such a huge sports fan. But I have had dream after dream for my son die an agonizing death. I have always been happy because soccer and baseball were something that I could count on. Something that he could do. Something that made him seem a little more part of the group. Something where he could feel like he was part of something. Now that's gone.
He's already changed his mind about quitting, but it's just too much. It's too much to put him through. The thing that used to make him part of something has turned into something that makes him even more different. It's too much to put his coaches through. It's too much to put his team through. It's too much to put us through.
I sit on that bench and every single time he breaks down, I want to do the same thing. I want to cry and stomp and sob right along with him.
This is not how it's supposed to be.
J has been involved in sports from day one. Ever since he was old enough to join baseball and soccer (which is mostly the only sports around here) he has been on a team. He has loved it, and he has excelled at it. He zips up and down the soccer field, and he lives for it. He was an amazing catcher, with strong hits.
But it's all over. A switch seems to have flicked in him the last year that has turned him from a sunny, happy child into a sobbing time bomb waiting to go off. I have literally sat at every single baseball practice and game holding my breath, praying that it wouldn't ignite, just this once. Every single time he has exploded into a crying, sobbing, heaving mass of self-doubt and self-loathing. I don't know how to make him stop. I don't know what to do.
We have been to therapy and been to therapy. We have changed the meds, we have seen the doc. Doc says drama will more than likely always be a part of his life. How is he supposed to lead a life like this? Is it hormones starting to kick in? Will he always be like this? Will he be able to be an adult on his own?
Every time he strikes out, or even just hits incorrectly, he stomps off the field into the dugout and sobs like his best friend just died. Even being walked is not good enough. We can't encourage him without him freaking out more. We can't be stern. We can't do anything with him when he gets like this. He even did this at practice when something didn't go his way. Then, because he wasn't on a normal bedtime schedule, the next day was rough.
Tonight he was sobbing that he wanted to quit and was hysterical.
So D and I made the decision to pull him out of baseball. It was about more than I could bear. It wasn't that I am such a huge sports fan. But I have had dream after dream for my son die an agonizing death. I have always been happy because soccer and baseball were something that I could count on. Something that he could do. Something that made him seem a little more part of the group. Something where he could feel like he was part of something. Now that's gone.
He's already changed his mind about quitting, but it's just too much. It's too much to put him through. The thing that used to make him part of something has turned into something that makes him even more different. It's too much to put his coaches through. It's too much to put his team through. It's too much to put us through.
I sit on that bench and every single time he breaks down, I want to do the same thing. I want to cry and stomp and sob right along with him.
This is not how it's supposed to be.
Tuesday, May 31, 2011
Gifts of Autism
I never could have imagined that Autism would give my son gifts. I didn't want to associate positive things with this hated word. But, my son wouldn't be who he was if he didn't have it. He wouldn't have some of the gifts that he has without it, so who am I to wish it changed.
My son is nine years old, heading rapidly to that huge double digit stage. Most nine year old boys that I know are blood and guts and gore and grossness. They are looking for snakes to scare someone with, rough and tumble.
Autism has gifted my son with a sensitivity that is rare in children. He sometimes makes me see the world through a different set of eyes.
Today the boys and I spent most of the day today going back and forth from the "old" home place getting things from the yard. When we went into the garage to gather a few left behind things, I picked up a box and began screaming. Inside the box was a baby mouse. I despise mice. I grew up in a very poor home, and mice were ALWAYS in my house. Mice seem to have an affection for me that I have never understood. Once I woke up with a mouse sitting on my arm. Another time one fell in love with me and would chase me all over the house and crawled up my leg. Maybe it is all the cheese that I eat. No lie! Ask my family. My brother finally had to take a broom to it when it chased me up a chair one day and then sat there staring at me.
Anyway, I digress. So, I pick up the box and am trying to figure out what to do with it. It has some of my books in it and some soccer shirts. I pull the shirt up out of the box, and to my absolute HORROR find THREE more baby mice. I am distraught. Jackson is entranced. They are young. They don't even have their eyes open. All I can see is ick and gross and MOUSE. Jackson begins oooing and cooing all over them. He asks if he can pet them. He comments on how tiny they are, and how their momma must be missing them. He asks if he can have them as pets. I squawk out a NO.
He talks to them as if they are the sweetest little things in the world. He reaches in and with the tip of his finger pets one of them and it squeaks. He talks about how they must be afraid because of the noises that they are making. He tells me that we must place the box back in the floor of the garage so that the momma can find her babies.
My heart began to hurt for the babies and their distraught momma. As we get back into the truck to leave, he comments about how he will miss the little mice, and hopes that they are okay.
Who looks at a mouse and sees innocence and beauty? I certainly never did, before today.
My son is nine years old, heading rapidly to that huge double digit stage. Most nine year old boys that I know are blood and guts and gore and grossness. They are looking for snakes to scare someone with, rough and tumble.
Autism has gifted my son with a sensitivity that is rare in children. He sometimes makes me see the world through a different set of eyes.
Today the boys and I spent most of the day today going back and forth from the "old" home place getting things from the yard. When we went into the garage to gather a few left behind things, I picked up a box and began screaming. Inside the box was a baby mouse. I despise mice. I grew up in a very poor home, and mice were ALWAYS in my house. Mice seem to have an affection for me that I have never understood. Once I woke up with a mouse sitting on my arm. Another time one fell in love with me and would chase me all over the house and crawled up my leg. Maybe it is all the cheese that I eat. No lie! Ask my family. My brother finally had to take a broom to it when it chased me up a chair one day and then sat there staring at me.
Anyway, I digress. So, I pick up the box and am trying to figure out what to do with it. It has some of my books in it and some soccer shirts. I pull the shirt up out of the box, and to my absolute HORROR find THREE more baby mice. I am distraught. Jackson is entranced. They are young. They don't even have their eyes open. All I can see is ick and gross and MOUSE. Jackson begins oooing and cooing all over them. He asks if he can pet them. He comments on how tiny they are, and how their momma must be missing them. He asks if he can have them as pets. I squawk out a NO.
He talks to them as if they are the sweetest little things in the world. He reaches in and with the tip of his finger pets one of them and it squeaks. He talks about how they must be afraid because of the noises that they are making. He tells me that we must place the box back in the floor of the garage so that the momma can find her babies.
My heart began to hurt for the babies and their distraught momma. As we get back into the truck to leave, he comments about how he will miss the little mice, and hopes that they are okay.
Who looks at a mouse and sees innocence and beauty? I certainly never did, before today.
Saturday, May 14, 2011
What is Autism?
It's been a while since I could post. We have moved recently, and it has been a nightmare. For any family moving can be stressful to the max. For a family with an autistic child, it's somewhere south of you know where. ;)
We began the process months ago, putting our place up for sale, explaining to J that this is what was happening. Preparation seems to work best with him. Finally, the place sold. We were keeping our trailer, in the hopes that being in the same home would soften the blow for him. Then, one day the man showed up at the house to begin cutting down trees. J FLIPPED. He could not understand why this man was cutting down trees. It was NOT his place. Then we actually had to move in with my husband's parents for a couple of weeks until we could get things moved over. The complete change in routine (and lack of routine for that matter) led to disaster. He was going to bed two hours later than normal in a different house, and in a different shower every morning, etc. His teacher was emailing me about what an awful week he had had. He had gone backwards, she noticed. We also noticed at home that he was having more crying jags and meltdowns.
We are now back in our house. I am hopeful that this will set his routine back in motion, and will enable him to get back to his normal.
What is autism exactly? Can anyone definitely answer that question? A link to an article can quickly become a hotly debated topic. Is it cause by a vaccine? Is it genetic? Can it be cured? So many questions, with no real answers.
I am going to go out on a limb here, and say what I believe. Now, of course, that doesn't make it the gospel. It doesn't make it true. It doesn't even make it logical. It's just my experience with life. I am pretty sure that autism is genetic. A blog that I follow talked about how hard it is for many parents of autistics to advocate for their children, because many of them display autistic traits themselves. That has really set me to thinking for some time. Even before that, I had my suspicions that this was something that had been passed down through the generations.
For years my brother has been what people have always called "odd, not right, different, weird." He's always been very unemotional. He can't process things. He had tons of ear infections as a child. He was and still is a loner. I could go on and on all day about traits that he has that I guarantee would label him autistic. No one has ever been able to figure him out, but I have a suspicion that I know. He's not the only one that I could point out these behaviors in, but he's certainly the strongest.
I also don't think that there is any ONE thing that triggers autism. Some parents feel that the MMR vaccine triggered it in their child. I think that J's extremely traumatic birth triggered it in him. He's been this way his entire life. Nothing seemed to "trigger" him at any age. He's just always been that way. I think that it's something in their DNA or their brain that is waiting for something to trigger it. I think that trigger can be just about anything. Because I believe this, I don't believe that we will ever find out everything about it. I don't believe that we will ever cure it. I do believe as more environmental factors and other things impact our children, the rates will continue to skyrocket.
I had a frustrating incident today. I won't talk much about it here, because I don't want to offend anyone, but it frustrates me to NO end that there are some people that look at my child and see crying screaming brat/baby who can't handle the situation, and look at another child with a visible disability and have a completely different perception. It's not that he's being a brat, it's not that he's not trying. It's not bad parenting. It's not that we aren't trying. It makes me feel very defeated.
I constantly look for the positive in this situation. I used to spend a lot of time thinking, why? Why my child? Why my family? Why? What did we do? But those are more unanswerable questions. Why any child? Why any family? Why? What did anyone do? I can't dwell on that. This quote came to me, and it fits perfectly. "It's taken me all my life to understand that it is not necessary to understand everything." Rene Coty
I know my posts may seem pretty down a lot, and I apologize for that. I have determined to end every post with a positive, because my son is a great kid.
I truly believe that J is destined for great things. He seems to have a special affinity for young children. Every time he sees a young child or an infant he becomes determined to do everything in his power to make them smile and laugh. As I was standing in the grocery store today, I turned around to find J in the next aisle over, doing everything in his power to make a little girl in the cart smile. He then turned to me to show off that she was indeed laughing. THAT is a gift. I see so many bright possibilities for him.
We began the process months ago, putting our place up for sale, explaining to J that this is what was happening. Preparation seems to work best with him. Finally, the place sold. We were keeping our trailer, in the hopes that being in the same home would soften the blow for him. Then, one day the man showed up at the house to begin cutting down trees. J FLIPPED. He could not understand why this man was cutting down trees. It was NOT his place. Then we actually had to move in with my husband's parents for a couple of weeks until we could get things moved over. The complete change in routine (and lack of routine for that matter) led to disaster. He was going to bed two hours later than normal in a different house, and in a different shower every morning, etc. His teacher was emailing me about what an awful week he had had. He had gone backwards, she noticed. We also noticed at home that he was having more crying jags and meltdowns.
We are now back in our house. I am hopeful that this will set his routine back in motion, and will enable him to get back to his normal.
What is autism exactly? Can anyone definitely answer that question? A link to an article can quickly become a hotly debated topic. Is it cause by a vaccine? Is it genetic? Can it be cured? So many questions, with no real answers.
I am going to go out on a limb here, and say what I believe. Now, of course, that doesn't make it the gospel. It doesn't make it true. It doesn't even make it logical. It's just my experience with life. I am pretty sure that autism is genetic. A blog that I follow talked about how hard it is for many parents of autistics to advocate for their children, because many of them display autistic traits themselves. That has really set me to thinking for some time. Even before that, I had my suspicions that this was something that had been passed down through the generations.
For years my brother has been what people have always called "odd, not right, different, weird." He's always been very unemotional. He can't process things. He had tons of ear infections as a child. He was and still is a loner. I could go on and on all day about traits that he has that I guarantee would label him autistic. No one has ever been able to figure him out, but I have a suspicion that I know. He's not the only one that I could point out these behaviors in, but he's certainly the strongest.
I also don't think that there is any ONE thing that triggers autism. Some parents feel that the MMR vaccine triggered it in their child. I think that J's extremely traumatic birth triggered it in him. He's been this way his entire life. Nothing seemed to "trigger" him at any age. He's just always been that way. I think that it's something in their DNA or their brain that is waiting for something to trigger it. I think that trigger can be just about anything. Because I believe this, I don't believe that we will ever find out everything about it. I don't believe that we will ever cure it. I do believe as more environmental factors and other things impact our children, the rates will continue to skyrocket.
I had a frustrating incident today. I won't talk much about it here, because I don't want to offend anyone, but it frustrates me to NO end that there are some people that look at my child and see crying screaming brat/baby who can't handle the situation, and look at another child with a visible disability and have a completely different perception. It's not that he's being a brat, it's not that he's not trying. It's not bad parenting. It's not that we aren't trying. It makes me feel very defeated.
I constantly look for the positive in this situation. I used to spend a lot of time thinking, why? Why my child? Why my family? Why? What did we do? But those are more unanswerable questions. Why any child? Why any family? Why? What did anyone do? I can't dwell on that. This quote came to me, and it fits perfectly. "It's taken me all my life to understand that it is not necessary to understand everything." Rene Coty
I know my posts may seem pretty down a lot, and I apologize for that. I have determined to end every post with a positive, because my son is a great kid.
I truly believe that J is destined for great things. He seems to have a special affinity for young children. Every time he sees a young child or an infant he becomes determined to do everything in his power to make them smile and laugh. As I was standing in the grocery store today, I turned around to find J in the next aisle over, doing everything in his power to make a little girl in the cart smile. He then turned to me to show off that she was indeed laughing. THAT is a gift. I see so many bright possibilities for him.
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