I don't want to be overly dramatic, but my heart literally feels like it hurts sometimes when it comes to J. Tonight we had our first baseball practice of the season, and it was rough. He did a lot of crying, whining, and fighting with the other kids. I tried talking to him afterward, and he melted down. Then he sat in the car and cried the whole way home that he has no friends. He just doesn't understand how to make friends. His coaches did an amazing job, I am so blessed that they were so kind to him.
I have so many fears. Will he reach a point where he stops maturing, and that's the stage that he's at? Are we going to get to the point where I have to pull him out of sports because he becomes more of a detriment to the team and the other kids than he is learning?
Every part of my soul aches for him. The kids don't like him. He knows it. He just can't figure out why, and how to fix it, and he is suffering. I can't fix it. I can't explain to him that he turns the kids off with his behaviors, because he can't understand why the behaviors are wrong. He doesn't understand friendship.
Will he ever? I don't want him to be alone and sad.
Tuesday, April 19, 2011
Sunday, April 10, 2011
Pedal, pedal!!!
Did you ever realize just how much coordination goes into riding a bike? You start out very young with training wheels, you hop on, and eventually you move to no training wheels. Well, it's not been so easy here. First off, the place that we have lived has been almost completely and fully wooded, and what isn't is very hilly. The boys haven't had a lot of flat good places to ride on. With J's complete lack of coordination, having a completely flat place and tons of time are essential. Therefore, my nine year old does not know how to ride a bike. I had tried taking him up on the paved road, but he got so nervous at being on the road with the cars that it was not good.
So today, after taking a load of things to the farm, I decided to spend some time working with him after I noticed him careening wildly in the grass and getting frustrated. I put him on the bike, and then had to spend some time calming him down. Then we worked on visualizing how the handle bars needed to be, how his body needed to be. And then we walked. Rather, he rode, and I gripped the back of his shirt and walked. I walked back and forth, back and forth, back and forth down the driveway. Tiny steps. Tiny steps.
When he actually got a few feet down the driveway with out me literally holding him upright on the bike, I cheered like he had just won the World Series. After a while, he got tired, and he had a harder and harder time staying up on the bike. So, we decided that he was tired, and it was time to stop for the day.
I wanted SO badly for him to end the day by riding that bike up and down that driveway like a pro. But, it's not about me. He was happy, and he felt successful. So, we will keep at it. Tiny steps momma, tiny steps.
I read something today struck my heart. Another mom who writes frequently was discussing the Salem witch trials with her daughter, and they came to a section about how "they singled out everyone who acted strangely" and her daughter was upset and said that they would have singled out her autistic sister. She's a smart little girl. People fear what they don't understand. As her mom said, "Awareness matters." It TRULY does.
So today, after taking a load of things to the farm, I decided to spend some time working with him after I noticed him careening wildly in the grass and getting frustrated. I put him on the bike, and then had to spend some time calming him down. Then we worked on visualizing how the handle bars needed to be, how his body needed to be. And then we walked. Rather, he rode, and I gripped the back of his shirt and walked. I walked back and forth, back and forth, back and forth down the driveway. Tiny steps. Tiny steps.
When he actually got a few feet down the driveway with out me literally holding him upright on the bike, I cheered like he had just won the World Series. After a while, he got tired, and he had a harder and harder time staying up on the bike. So, we decided that he was tired, and it was time to stop for the day.
I wanted SO badly for him to end the day by riding that bike up and down that driveway like a pro. But, it's not about me. He was happy, and he felt successful. So, we will keep at it. Tiny steps momma, tiny steps.
I read something today struck my heart. Another mom who writes frequently was discussing the Salem witch trials with her daughter, and they came to a section about how "they singled out everyone who acted strangely" and her daughter was upset and said that they would have singled out her autistic sister. She's a smart little girl. People fear what they don't understand. As her mom said, "Awareness matters." It TRULY does.
Friday, April 8, 2011
Stress
Stress is very hard on me. So, I can only imagine the nightmare that stress is for J. The therapist has tried visualization strategies and counting with him when he is feeling angry or stressed, which so far isn't working. With him though, repetition tends to help with things, so I haven't given up hope.
You can always tell about a week in advance when he is going to get sick, because his behavior goes wild. He can barely even stand himself. He's often wild, unable to focus, jittery.
Even good things stress him out badly. When he was younger, holidays were a nightmare. We didn't tell him about special events until a day or two before, because his behavior would get so wild beforehand.
So, you can imagine that a trip to the ER for an injury, even if it's not his, would cause him stress. We had to go to have a wound looked at today. It wasn't his, but he was very stressed out. I always try to get him to take something with him when we go for something that might be traumatizing. But today, Diary of a Wimpy Kid wasn't enough to distract him from the trauma of someone he loved with a cut open finger and potential stitches.
Before the visit was over, he was arguing with C over every little thing, and sitting in the chair smacking himself on the head with his book and crying.
But you know what? Every day that goes by, we learn a little more. I realize what causes these events. I look back and look over all the times that things like this have happened and realize THIS was what caused it. I look at it now without the anger that I used to have that he wouldn't behave. Now I just now that it's autism rearing it's ugly head. Every day that goes by, we learn tools for getting better.
Hubs and I talked tonight about how much he's grown and changed and learned over the years. For example, for years, he chewed on everything in his path. He chewed literally through his clothes. He chewed his fingers until they were bloody. He chewed through those HARD plastic magnets that you put on your fridge, to the point that we had to get rid of them. Well, he also never ate. He lost massive amounts of weight. Well, guess what we figured out long ago? He was chewing because he was so hungry. Once we got him eating, he quit chewing. I've seen him do it once in months. But guess what else we figured out? He was chewing because he was so hungry, but he was so hungry because he wouldn't eat. He wouldn't eat because he wouldn't move his bowels.
What a vicious cycle autism is. I constantly want to rage against it. I want to tear it apart and stomp on it! I want to scream at autism GO AWAY.
God gave us our son for a reason. He knew that we would love and protect him with every breath in us.
You can always tell about a week in advance when he is going to get sick, because his behavior goes wild. He can barely even stand himself. He's often wild, unable to focus, jittery.
Even good things stress him out badly. When he was younger, holidays were a nightmare. We didn't tell him about special events until a day or two before, because his behavior would get so wild beforehand.
So, you can imagine that a trip to the ER for an injury, even if it's not his, would cause him stress. We had to go to have a wound looked at today. It wasn't his, but he was very stressed out. I always try to get him to take something with him when we go for something that might be traumatizing. But today, Diary of a Wimpy Kid wasn't enough to distract him from the trauma of someone he loved with a cut open finger and potential stitches.
Before the visit was over, he was arguing with C over every little thing, and sitting in the chair smacking himself on the head with his book and crying.
But you know what? Every day that goes by, we learn a little more. I realize what causes these events. I look back and look over all the times that things like this have happened and realize THIS was what caused it. I look at it now without the anger that I used to have that he wouldn't behave. Now I just now that it's autism rearing it's ugly head. Every day that goes by, we learn tools for getting better.
Hubs and I talked tonight about how much he's grown and changed and learned over the years. For example, for years, he chewed on everything in his path. He chewed literally through his clothes. He chewed his fingers until they were bloody. He chewed through those HARD plastic magnets that you put on your fridge, to the point that we had to get rid of them. Well, he also never ate. He lost massive amounts of weight. Well, guess what we figured out long ago? He was chewing because he was so hungry. Once we got him eating, he quit chewing. I've seen him do it once in months. But guess what else we figured out? He was chewing because he was so hungry, but he was so hungry because he wouldn't eat. He wouldn't eat because he wouldn't move his bowels.
What a vicious cycle autism is. I constantly want to rage against it. I want to tear it apart and stomp on it! I want to scream at autism GO AWAY.
God gave us our son for a reason. He knew that we would love and protect him with every breath in us.
Sunday, April 3, 2011
Med changes
Medication changes are always a challenging time. This hasn't been so rough, but the changes have been so small so far. I wait with bated breath to see how it goes. So far, day two of the new med to help him sleep, and it doesn't seem to be doing much good. But, I am going to breathe and let it take it's course. Maybe it just takes a while to build into his system.
A new week starts tomorrow. Every day is a new chance for beautiful things.
A new week starts tomorrow. Every day is a new chance for beautiful things.
Saturday, April 2, 2011
The new doc
We spent over two hours waiting in the waiting room for the doctor yesterday, but after meeting him, I see why. He actually came in the room and spent an HOUR with us. I have NEVER had a doctor do that before. He was kind, funny, and he has a child of his own who has autism. We talked about J for an hour. He wanted to get to know him. It was incredible.
We talked about each med that J is on or has ever been on. We talked about his history, what he does, and how he does it. I am very careful about what I say in front of J, and the doc was sensitive to that. J took to him. Even C did. They were rolling around on the floor, and the doc told them to wax it for them with their shirts, so they rolled around and were loud and crazy, and he didn't seem to care at all. Grinned about it, even.
Our sons were so similar. They had SO many things in common that it was crazy. The doc was so positive about what a bright future that my J can have. Every time someone tells me that, I hold it in my heart like a glowing little candle.
At one point, J was sitting in the floor, and I saw his shoulders shaking. He had his head in his hands. I asked him what was wrong, and he raised up a red, tear streaked face. He looked at me, heaved another sob, and said, "I don't want to be this way anymore." It completely shattered me. He's really starting to realize the differences between him and everyone else. The doc immediately jumped in and talked about how it wasn't cool to be "just like everyone else" and that his differences were awesome and were something to be celebrated. He said that "we don't know why God has this plan for us, but he does, and we work with it." Wow. Just wow.
The doc talked about how J is full of poop again. He felt around on his tummy, and could feel that it was bad again. He said that he thinks if we can get him going daily, his appetite will improve, and that this will help a lot of things. His son does the same thing. So, we are going to work on that and we are also going to work on the sleep. Sleep is so important to a functioning little mind. The doctor said that those are our two most important things to attack right now. We go back in three weeks, and he gave me his card and all his numbers, even if I need to call him after hours.
It was refreshing to have not only a doctor who cared to spend the time, but someone who understood exactly what we were going through. We swapped "war" stories. :)
We talked about each med that J is on or has ever been on. We talked about his history, what he does, and how he does it. I am very careful about what I say in front of J, and the doc was sensitive to that. J took to him. Even C did. They were rolling around on the floor, and the doc told them to wax it for them with their shirts, so they rolled around and were loud and crazy, and he didn't seem to care at all. Grinned about it, even.
Our sons were so similar. They had SO many things in common that it was crazy. The doc was so positive about what a bright future that my J can have. Every time someone tells me that, I hold it in my heart like a glowing little candle.
At one point, J was sitting in the floor, and I saw his shoulders shaking. He had his head in his hands. I asked him what was wrong, and he raised up a red, tear streaked face. He looked at me, heaved another sob, and said, "I don't want to be this way anymore." It completely shattered me. He's really starting to realize the differences between him and everyone else. The doc immediately jumped in and talked about how it wasn't cool to be "just like everyone else" and that his differences were awesome and were something to be celebrated. He said that "we don't know why God has this plan for us, but he does, and we work with it." Wow. Just wow.
The doc talked about how J is full of poop again. He felt around on his tummy, and could feel that it was bad again. He said that he thinks if we can get him going daily, his appetite will improve, and that this will help a lot of things. His son does the same thing. So, we are going to work on that and we are also going to work on the sleep. Sleep is so important to a functioning little mind. The doctor said that those are our two most important things to attack right now. We go back in three weeks, and he gave me his card and all his numbers, even if I need to call him after hours.
It was refreshing to have not only a doctor who cared to spend the time, but someone who understood exactly what we were going through. We swapped "war" stories. :)
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