Before I write anything else, I need to state that the health issue in this post ended well. That being said...
I had to have a procedure that was going to require anesthesia. My concern was that I would be unavailable to RJC if there was an issue of some sort. We are used to having a Plan A and a Plan B, but in this case I could not get a comfort level with being so completely out of touch. We needed more plans.
Luckily, we have amazing friends. So here's what we had:
Plan A: Hubby is with me in the hospital and Naomi brings RJC to her program and picks her up at the end of the day.
Plan B: If there is a problem with RJC, Naomi comes to stay with me at the hospital and Hubby leaves to take care of the issue.
Plan C: Hubby leaves and friend A comes to the hospital.
Plan D: Hubby leaves and friend B comes to the hospital.
While this may seem like overkill, I could not manage to relax (well, become less crazed) until we had a few plans that were workable.
Once this issue was worked out I had to give thought to the bigger issue. What if I had cancer? How would I be able to handle RJC issues with a huge health issue? Then the really big issue. You know. The one where you have to give some thought to your family member's futures without you. That really big one.
It's very strange when the big fear you think about so often, and talk about with your husband, manages to become just a little more real. On the one hand, I spent a great deal of time self talking myself into the idea that nothing would happen, and all would be well. That really was my focus. However, night would fall and so would any bit of positive thought. I had myself killed off and tried to imagine how my family would deal. Sometimes in my mind it worked out fine. Most of the time I pictured this big empty picture frame. I could not even imagine what would fill in that frame. I simply could not figure out what would be best for RJC, what would happen to her with me not there. I guess I had thought that when the time really came, we'd work it out. What if this WAS the time and it was really coming? Oh my gosh, I literally had no clue.
By the time the procedure came, I still had no plan for my girl. Talk about failure. But there was nothing at all I could do except hope and pray. So that's what I did.
As I write this, I am beyond relieved that the procedure is over and I had a good outcome. But really - hope and pray? Is that all I've got? Even when the issue may be coming to a head, that's the best I can do?
There's really no ending to this. While I hate to leave this sort of dangling, it's where we literally are in the reality of the issue - dangling. My last thought on this issue right now?
We need to figure this out.
Wednesday, March 30, 2016
Sunday, March 13, 2016
Rough Waters
I like to think that I have a generally good attitude on most days, about most things. It concerns me that this week I have not only had a bad attitude, I have been downright annoyed. Gritting my teeth until my jaw hurts. This week, autism has been complicated and frustrating and I am not handling it well.
We are in rough waters.
It so happens that for whatever RJC reason, she is having a very difficult time. There have been episodes of screaming that seem to come out of nowhere. If we were to try to complete an ABC chart (antecedent, behavior, consequence) we could not begin to figure out the antecedent.
Last night our family went to a restaurant of her choosing. She was excited to go, and knew what she was planning to order before we even arrived. t was a Saturday night, which tends to be busy, but we've managed to go out on plenty of Saturday nights without any issues. This was not one of those nights.
It's one thing when we know what the issue is, but when she starts screaming for no apparent reason feelings of panic and helplessness overcome me. At this moment, it's about damage control. Trying to contain whatever this "thing" is within, that is making her so miserable. We don't want her to hurt anyone or throw anything. She was screaming loudly, and I was apologizing to the people behind us (who, thank goodness, were very nice). I tried to get her to leave but that made her scream more loudly. When she was little I could pick her up and carry her out but we are way past that stage. I finally convinced her to go into the bathroom with me. When we got there she was still screaming so I offered to wash her face. She had been yelling so loud that she was sweating through two shirts. I took the long sleeved shirt off of her, and she was not in just her tshirt. I washed her face with a wet paper towel and she suddenly leaned into me, put her arms around me and her head on my shoulder. I put my arms around her and we started to rock back and forth. We stayed like that for quite a while, and I could see in the mirror that she was closing and opening her eyes. I could feel her body start to relax and eventually I asked her is she was all set to eat. We were able to return and successfully finish dinner.
Since being home, she has spoken nonstop about "trying again." After the fact, she is aware that there was a problem and she always wants to do it again so she can get through it successfully. She asks me to tell her the story about "RJC at the restaurant" so I tell her something like:
Once upon a time, RJC and mom and dad and Naomi went to the restaurant. RJC ate and was very quiet and happy. She even had dessert. The End.
The she says, "That's a great story, mommy." We will repeat this general story and her response until we actually do return to that very restaurant and give her a "do over."
For her, the worst of last night's issue is over. For me? Not so much. All day I have been edgy. My stomach is off, I am gritting my teeth, and for the life of me I cannot stop thinking about it. I have obsessed most of today about what the problem was - why the behavior? Why is happening more often and why can't we figure out the cause? I've thought about the standards - she doesn't feel well physically, the change of weather, moving the clock. While I can see these things affecting her to a point, I just can't seem to believe it would cause these big scenes we are having.
This coming week can be a continuation of this behavior, or not. That's the really rough thing to deal with because it means I'll be edgy, just waiting for that phone call that there was a problem, or waiting for this behavior to rear it's ugly head again when we are out and about in the community. What to do, what to do?
You'd think that after all these years I'd know how to deal with this. I don't. Instead, it makes me more edgy and more grumpy. I think part of it is that I am getting older, but I also think a large part of it is that I feel so doggone bad for her. She obviously does not want to behave in this way. Something is obviously making her unhappy. She obviously cannot communicate her feelings in a constructive way. So why can't the root of this issue be obvious so that we can solve the problem? This is the sort of behavior that will keep her from getting a job. It is the sort of behavior that makes me worry that somebody may hurt her because they are scared of her. It is the sort of behavior that makes us hesitant to bring her places or for people to extend invitations to us that include her.
It is the sort of behavior that has me fearing for her future.
I'm sure that with a few good days this experience will fade into the background and it will slip to the corner of my mind. I feel just as sure that this is not the last time we will deal with this.
Rough waters.
Lifeboat anyone?
We are in rough waters.
It so happens that for whatever RJC reason, she is having a very difficult time. There have been episodes of screaming that seem to come out of nowhere. If we were to try to complete an ABC chart (antecedent, behavior, consequence) we could not begin to figure out the antecedent.
Last night our family went to a restaurant of her choosing. She was excited to go, and knew what she was planning to order before we even arrived. t was a Saturday night, which tends to be busy, but we've managed to go out on plenty of Saturday nights without any issues. This was not one of those nights.
It's one thing when we know what the issue is, but when she starts screaming for no apparent reason feelings of panic and helplessness overcome me. At this moment, it's about damage control. Trying to contain whatever this "thing" is within, that is making her so miserable. We don't want her to hurt anyone or throw anything. She was screaming loudly, and I was apologizing to the people behind us (who, thank goodness, were very nice). I tried to get her to leave but that made her scream more loudly. When she was little I could pick her up and carry her out but we are way past that stage. I finally convinced her to go into the bathroom with me. When we got there she was still screaming so I offered to wash her face. She had been yelling so loud that she was sweating through two shirts. I took the long sleeved shirt off of her, and she was not in just her tshirt. I washed her face with a wet paper towel and she suddenly leaned into me, put her arms around me and her head on my shoulder. I put my arms around her and we started to rock back and forth. We stayed like that for quite a while, and I could see in the mirror that she was closing and opening her eyes. I could feel her body start to relax and eventually I asked her is she was all set to eat. We were able to return and successfully finish dinner.
Since being home, she has spoken nonstop about "trying again." After the fact, she is aware that there was a problem and she always wants to do it again so she can get through it successfully. She asks me to tell her the story about "RJC at the restaurant" so I tell her something like:
Once upon a time, RJC and mom and dad and Naomi went to the restaurant. RJC ate and was very quiet and happy. She even had dessert. The End.
The she says, "That's a great story, mommy." We will repeat this general story and her response until we actually do return to that very restaurant and give her a "do over."
For her, the worst of last night's issue is over. For me? Not so much. All day I have been edgy. My stomach is off, I am gritting my teeth, and for the life of me I cannot stop thinking about it. I have obsessed most of today about what the problem was - why the behavior? Why is happening more often and why can't we figure out the cause? I've thought about the standards - she doesn't feel well physically, the change of weather, moving the clock. While I can see these things affecting her to a point, I just can't seem to believe it would cause these big scenes we are having.
This coming week can be a continuation of this behavior, or not. That's the really rough thing to deal with because it means I'll be edgy, just waiting for that phone call that there was a problem, or waiting for this behavior to rear it's ugly head again when we are out and about in the community. What to do, what to do?
You'd think that after all these years I'd know how to deal with this. I don't. Instead, it makes me more edgy and more grumpy. I think part of it is that I am getting older, but I also think a large part of it is that I feel so doggone bad for her. She obviously does not want to behave in this way. Something is obviously making her unhappy. She obviously cannot communicate her feelings in a constructive way. So why can't the root of this issue be obvious so that we can solve the problem? This is the sort of behavior that will keep her from getting a job. It is the sort of behavior that makes me worry that somebody may hurt her because they are scared of her. It is the sort of behavior that makes us hesitant to bring her places or for people to extend invitations to us that include her.
It is the sort of behavior that has me fearing for her future.
I'm sure that with a few good days this experience will fade into the background and it will slip to the corner of my mind. I feel just as sure that this is not the last time we will deal with this.
Rough waters.
Lifeboat anyone?
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