In the early years, a simple visit to the doctors office would have devastating effects. We would go to simply have a well check, or immunization and it would turn in to a long-lasting emotional mark. One meltdown that included tears, physical altercations and embarrassment for me would cause me to have fear so real that I would resort to being isolated in the house for at least 2 days. I would go through the motions of meeting the boys' every need, but they knew it was different. My lingering tears might have been the first clue. They were like Bloodhounds--smelling fear up to 2 miles away. These early years I will call, "Isolation". The effects of this situation would make me want to avoid going to the grocery store with the boys, or even to get gas in the car. In fact, my husband and I still feel as though there is a void in our memory of these years, but unwillingly I can pull up the crumbs if I wish to. I felt personally responsible and like a failure. Why was this happening to me?
As time passed, we still had meltdowns, but I was able to sit back a little bit rather than giving a knee-jerk reaction. It wasn't always productive, but sometimes it was. By this time we had implemented a sensory diet, but we were still very much in the learning stages when it came to knowing what the "triggers" were or how to be more proactive. I call this my "observation" years. For example, when we tried Special Olympics skiing. Jake loved it and moved into a routine very quickly. Joe--not so much. We tried a different strategy each week to no avail. The one thing I learned from this (if there had to be a lesson) is to consider what the priority of an activity is. For skiing, we decided it was not a life skill that had to be loved. The same goes for Joe's disdane for Halloween. It's not important to us that he love Halloween. On the other hand, doctors visits needed to be a part of life, and it would help a lot if they were successful. I had no intention of spending my life suffering through a routine task. I wanted no part of ongoing bite marks on my arms or bloody scratches everywhere else. This had to be mastered.
I decided that a trip to Disney World was also something we needed to find a way to enjoy. The boys have always loved Disney and probably always will. Our first trip was a logistical nightmare. We had no idea that Joe woudl have a severe aversion to riding on the boat that we had to take to get from the campground to Magic Kingdom. Because we were on vacation, I did not have the luxury of "sitting out" for 2 days. It would not be fair. We made some immediate adjustments to get through it. This and other necessary experiences gave me a way to view situations in a more productive way when I was able to analyze the need for doing it. So, we had one bad visit. Is this something we will or need to do again? If so, I had to figure out how to make it successful. In the case of Disney World, I had one tool that I didn't even know I had---photos of happy moments. These will be saved and recorded for future visits, even though it may be years in between.
One other huge lesson I've learned about analyzing negative situations to the point of making them positive, is how to regulate myself. As I said, these boys can smell fear 2 miles away! If I go into a situation with a preconcieved notion about what might happen based on what happened before, it's bound to lead to a negative experience. I realize now that there are things in the world that I cannot control. Those can lead to a negative reaction for the boys.....BUT, if I envision a positive experience and prepare them the way I know works, then I've done all I can. The outcome is not predetermined.
I also learned to relax a bit more (trust me--this took time). A call from the school saying, that "there was a toileting accident today", did not throw me into a panic. Often times, it will have been a one-time occurrence. If a situation was ongoing, and I could see that it was problematic, I took action. I would gather the facts around it (especially if it was happening at school where I was not there), take some time to analyze it and ask for help from professionals if needed. Often times it was needed. Having a neutral party involved helped me to see clearly what was happening and what could be done about it. These people are still very involved in our lives and have helped tremendously (you know who you are). I was also able to relax when the High School teacher called me and said, "As you know, it is our policy to contact parents when inappropriate behavior occurs.....("uh huh", I said)...."Today, Joe touched a girl on the butt. Now....before you go off on me, just know I HAD to call you.....(long pause) It's not like he didn't have a few role models......so consider yourself called" (click). I had to laugh. This was not a situation that required my intervention.
So, as far as doctors visits go, we are still working on a full successful experience, but it's about 80% better. We have implemented a routine where we attempt to use an automated blood pressure monitor once a month. We all sit down and take our blood pressure as a family. Is it perfect?--no. Are we trying?--yes. This will take time. This past Christmas we spent time at Disney Land with a very successful visit. Was it crowded?--yes. Were there things we could not predict?--yes. Did we make it positive?--absolutely. We were able to use photos from Disney World (it doesn't matter to them where--it's the subject matter that is most important) as a model for what would happen and where we would be.
I believe these opportunities for improvement will always be there for me. I actually hope they are. One of them is to help teach others how to live with and handle the boys day-to-day. For example, at this very moment, Joe is exhibiting a bit of hyperarousal by stomping his feet. Does it require my intervention? Maybe. Can't he see that I am busy anyway? Teaching others to know what the boys thresholds are, and how to intervene will be a long-term and ongoing process until we are out of the picture. I welcome the challenge and the chance to continually learn my own fear threshold.