Gifted teen with disabilities dealing with isolation and anxiety
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|Mon, 01-07-2013 - 1:54pm|
My 14-year-old gifted homeschooled son has not been around other kids since last spring when he had to quit his musical theater class because of migraines, back pain, and wearing a scoliosis brace that did not work. Three years of pain and isolation and the brace did not work. Now we are facing surgery and he knows too much about the risks. There are no pain free options. No choices. He and I are worried about anesthesia. They tell us that there are risks with any surgery and this would be a six-hour major surgery. My mother went in for a simple hernia surgery that left her with brain damage. She needed 24 hour care the rest of her life and my dad took care of her at home with my son and I staying with her whenever he had to leave the house. My son became interested in neuroscience at that time. We looked online for possible reasons that it happened to her since doctors would not tell us anything and we found lots of scary information then, enough that when we asked the orthopedic surgeon about it he agreed that my son should go through genetic testing to see if he would be at risk for complications. There is so much scary information out there and once you know the scary stuff it is hard to put it out of your mind. I watched a show recently about medical errors. One had to do with anesthesia not working and the patient feeling everything but not being able to move. The risk of infection is also very scary. Then Science Daily had an article about morphine making pain worse for some people. This is what my son would be on after surgery. There is nobody to talk to about any of this. He is worried about being diagnosed with something else that is worse than the developmental coordination disorder we were told that he had even though he doesn't have many symptoms of it except for handwriting issues--his hands still get tired after five minutes of writing and his top finger joints are hypermobile. The isolation is painful. I can't take anxiety medication because it makes me too tired as does the blood pressure medication that I do take. We both have white coat syndrome. We don't see the doctors again until next month so there is a lot of time to worry about things like how would we get through six days in a hospital?
We are unschooling again. He works on things that do not remind him of the medical issues and for now that means no biology. Last night he worked on raising his typing speed. He got up to 70 wpm using DVORAK instead of QWERTY. He could type about 60 wpm using QWERTY but he thought DVORAK might be easier for him with his fine motor issues so he taught himself DVORAK. He learned it quickly. He had me watch him do typing tests last night and at one point he read the lines he was typing out loud using a British accent as he typed. I think this might be unusual for someone with developmental coordination disorder or dyspraxia. He showed me how he has trouble typing fast if he actually places his fingers on the home keys. He has to keep his fingers just above them in order to get his fingers to the right spots. On the computer he seems to be able to compensate well for the hypermobile fingers and hand pain issues. He hasn't practiced handwriting in a while. He was never able to write for more than five minutes without his hands hurting so he learned to take notes using his iPhone. He can take notes a lot faster on his iPhone than he can write and he can do it without pain.