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    Joined: Apr 2009
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    Originally Posted by Lori H.
    Was your son tested all in one day? I think testing will be hard for my son because he is used to working for a while and taking breaks throughout the day. He is scheduled for 8 tests in one day and I don't know what all they will be testing. I continue to have more questions than I have answers.

    Have you told them that endurance is a big issue for him and asked if it is indeed a full day testing and if it would be possible to break it up over two days?

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    Originally Posted by passthepotatoes
    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.

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    For whatever it is worth from a distance...it is a lot for a kid to worry if they need surgery they will die. It is a lot for a kid to feel like it is hard to trust adult teachers because they believe they will be teased. It is a lot for a kid to fear doing any physical task in front of other people. It is a lot for a kid not to trust their own body. Any one of those things would for our family constitute reason to get help from a therapist. It is admirable if a kid finds some ways to cope on their own, but when the worry is persistent like this (whether they are vocalizing it or not) I believe some outside help is appropriate.

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    So far we have had trouble finding doctors who understand this combination of giftedness and dyspraxia and we were only being given what my son called cliche advice that was not helpful for us.

    He has never seen a pediatric neuropsychologist before, only an educational psychologist four years ago, so maybe we will get help this time, at least we are trying, but we know from experience that not all doctors are good ones. Recently, we found out that his grandmother, who has severe memory loss and dementia, was given medication to help improve her memory that did not work at all and seemed to make her worse and the doctor would not take her off of the medication when family members told the doctor it was not working. Finally, years later, they took her off of it and she is smiling again, able to follow our conversations a little more, is using words and phrases that we thought she was not longer able to use and can even make funny sarcastic remarks at appropriate times. We try not to think about the years she was so miserable and literally tore most of her hair out and the doctor only gave her medication that made her worse. My son has seen for himself that doctors don't know everything and some of them don't appear to be trying too hard to figure out the real problem and for this reason he is skeptical that he will get any help. My whole family has some anxiety about doctors after seeing what happened to my mother and we are reminded of it every single day because we live next door to her and are responsible for her when my dad has to leave the house for any reason.

    My son knows that doctors get annoyed when we ask questions about the x-rays he is getting every 3 months to see if his scoliosis and gotten worse. We just want to know if it is safe to have x-rays this often. We have a right to know. The doctor just says we have no choice. No attempt to tell us that it is relatively safe or anything. Just "you have no choice."

    My son knows too much about all of this because we couldn't get away from it so we chose to try to learn as much as we could about my mother's issues. We have more anxiety when we don't know why something is happening. He can tell you the difference between retrograde and anterograde amnesia because his grandmother had both--couldn't remember the last 30 years and couldn't remember anything more than 30 seconds after she had surgery to repair a hernia, but she could still answer Jeopardy questions because she read so much before that time. He knows there is a part of the brain that controls inhibition and when that is damaged people can do very interesting and totally socially unacceptable things right in front of you and they can't help it. He knows this is hard for me to watch when I have had a social anxiety problem my entire life and he knows I can't help but wonder if this could happen to me. He tells me that I need to learn to have fun and stop worrying or it could be like a self fulfilling prophecy. He knows that I am feeling sorry for my mother and even sorrier for my dad who has now developed health problems because of the stress. A few days ago my sister called because my dad didn't answer the phone. Earlier in the day his blood sugar level had been dangerously low. We found him outside working in the yard and he didn't hear us when we called for him. He was at the other end of his three acres trimming trees. I tried so hard not to overreact but I could feel my blood pressure rising. Immediately I tried to figure out what I would do if I found him lying on the ground. My son was with me but wouldn't go back in the house because he is afraid to be alone. My mother, who is unable to take care of herself, was asleep. I felt very close to a panic attack until I found my dad. This is our anxiety provoking reality right now and I often don't get enough sleep which makes everything worse. I am jumpy and I sometimes yell at my son when we are running late. Like a lot of kids with dyspraxia he has trouble getting ready and can't get dressed quickly. We have to learn to live with all of it. I am on blood pressure medication because I can't stay calm and I don't want to have a stroke. I can't have a stroke because I have to homeschool because my son can't get an appropriate education in our public school because our state doesn't require it for twice exceptional kids.

    I forgot to mention that my husband often rides his motorcycle in traffic and occasionally during thunderstorms. We both try so hard to stay calm when he is out on his motorcycle in a thunderstorm and on the outside we look okay. It is what happens on the inside to our heart rate and blood pressure when our overexcitabilities and anxiety are constantly activated by circumstances beyond our control. The blood pressure medication I take makes me very tired when I need more energy to deal with things and I don't want my son to have take medication.

    We do need help but I don't know how cognitive therapy or anything like that would help with our situation. My son, with his incredible hearing, who was in another room heard me say under my breath "I'm living in a nightmare" when things just kept going wrong. He waited a while before asking me if he was part of the nightmare and seems to not quite believe me when I tell him that he helps me get through this and that he is such a joy to his grandfather and we don't know what we would do without him.








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    Again, take it for what it is worth from a random stranger on the Internet, but there is quite a bit of research demonstrating that cognitive behavioral therapy is highly effective in treating anxiety. It was a leap for our family to try it because as you are vocalizing in your post I could come up with a million reasons why it wouldn't work. But, I see now that these reasons were nothing more than a part of the anxious thinking. My anxiety was the way I thought but not one thing about that was serving to make my life better. It is possible to feel radically better than you feel right now and it is simply a choice if you value yourself enough to allow for that change.

    While I certainly think anyone with elevated blood pressure should be careful to treat it, it is also important that you are treating the right problem. If the real problem is anxiety, simply taking blood pressure medicine won't really address that problem. If you have not already done so I would seriously consider trying an antidepressant like an SSRI and also other natural methods of anxiety control like exercise and meditation.

    I strongly urge you to set an example for your son and seek help both from your primary care physician and from a good psychologist. Model for him that it is possible to make choices to care for yourself and live a healthier life.

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