In the end I wouldn't worry a lot about whether it is called SPD or OE or anxiety or whatever. I've learned valuable information from reading from all of those perspectives. I would call it whatever it takes to work on it and getting help. The biggest part of coping with any of these conditions is helping the child learn to identify their feelings and make appropriate choices to learn to feel better. It doesn't matter if you call it OE or SPD - it is a matter of the child learning to identify w is happening in the moment and to take actions to feel better (so feeling stressed jump on the trampoline not on your brother). In the beginning it takes parental direction but over the time a child can learn to do this stuff on their own.
I think he has already learned that keeping his mind active helps keep down the anxiety. For example, I know he had been thinking about the possibility of having to wear a brace for scoliosis 23 hours a day when he is sensitive to clothing tags and already has trouble sleeping. He would occasionally say things about it like one day he told me there was another option in addition to the brace or surgery, we could move to Notre Dame. For a few seconds I thought he had been online looking for alternative treatments until I realized that he was actually making a reference to The Hunchback of Notre Dame. He is worried more than most kids about the possibility of surgery because he remembers how his grandmother went in for routine surgery and came out with severe memory loss and dementia. He noticed that she suddenly had sensory issues and was very sensitive to sound and that she walked differently. He noticed her sensory issues before anyone else because he had been dealing with sensory issues his entire life.
He knows that things can go wrong in surgery and that knowledge leads to some anxiety. I can't take that knowledge away. He also has a gifted friend who had some kind of heart surgery who told us that he thought his memory was not quite as good as it was before the surgery. My son relies on his extremely good other types of memory to compensate for the motor memory challenges.
My son jokes about the things he worries about or he plays games to relieve some of it. While waiting for about an hour to see the doctor who would tell him if he had to wear the brace, he took out his iPod and learned some Japanese phrases, worked on word puzzles, and read interesting bits of trivia to us and he seemed okay. He just had to keep his mind active. He keeps telling me that I need to learn to play games to relieve my anxiety because he thinks I have more of a problem with it than he does. He doesn't have meltdowns, I do and I know he worries that he is the cause of some of my anxiety. I keep telling him it isn't him, it is the constant worry about my parents who live next door and feeling like there is not much help out there if we need it and the isolation that just gets to me sometimes. I keep telling him that he lessens my anxiety with all of his jokes and because he is a really an amazing kid.
He does not have any behavior issues related to the sensory issues other than being hesitant to try motor related activities in front of other kids and he doesn't like to be alone. He was so happy that we were able to find someone who could give him private swimming lessons and told the teacher how much easier it was to learn when nobody was constantly splashing him in the face or teasing him. His teacher seems to understand and is able to work around his phobia about being in deep water. She doesn't try to hurry him or tell him he's a wuss like a YMCA swimming teacher did in front of other kids. She understands it is harder to learn when you have anxiety about what you are trying to do.
Some of his teachers (gymnastics teacher, acting and dance teacher, and a few swimming teachers)were not understanding and not at all patient with him when he couldn't learn physical things like dance routines as fast as other kids because of his motor dyspraxia and hypotonia. We had trouble getting them to understand his difficulties because he seems so smart in all other ways. I can understand how he would have anxiety about some of this with his history and how it would be difficult to say to himself okay, the last few teachers didn't understand and I ended up feeling bad for even trying, but it won't happen this time. He knows that not all people are like those teachers but sometimes it is hard to keep trying. I am so glad he did try again with the swimming because this teacher is great.
