Gifted teen with disabilities dealing with isolation and anxiety

iVillage Member
Registered: 01-04-2002
Gifted teen with disabilities dealing with isolation and anxiety
15
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.   

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iVillage Member
Registered: 01-04-2002

It wasn't just his grandmother's story that feeds the anxiety.   His grandfather who lives next door recently had two knee replacement surgeries and was in a lot of pain from that.  I did not let my son go with me to take meals to my dad because I didn't want him to see him in pain, but my son could see that I was affected by it.   Several relatives had skin cancers removed recently including my husband who has had to have numerous surgeries, one for a more serious cancer that he was given a 50-50 chance of surviving.   Radiation therapy was really bad and my son saw his dad go through this and he is a sensitive kid.   My husband has talked about waking up during a medical procedure--before he knew about our son's need for surgery.  He said he didn't feel pain but he could see and hear what was going on.  My husband also had trouble waking up from anesthesia a few times, once at a VA hospital after an outpatient surgery and my son, who was about ten at the time, and I had to take him to the car and get him in without any help.  The nurse who had to stay late because of my husband was obviously irritated that she had to work late and she left us to find our way out of the maze of empty hallways.  I got a little stressed and my son was with me.   My husband has trouble with dental anesthesia not working as fast as it should and my son has the same problem.  My son asked the doctor about anesthesia and told him about his problem with dental anesthesia and the doctor just told him they use a different kind of anesthesia for surgery and didn't have time to answer more questions.  My son knows it is a different kind of anesthesia but he wonders if he might be like his dad and have a similar reaction to other types of anesthesia.   I am not sure if my son heard his aunt talking about his cousin who had a serious car accident and the anesthesia they gave him didn't work so all she could do was hold his hand until they could give him a different kind of anesthesia.  All I know is we have had anesthesia problems on both sides of the family, my son knows this and is worried about it and we need to get more information so that he can feel more confident that he will not have problems or if he does, the medical professionals will handle them.  I am worried because my daughter talked to an orthopedic surgeon friend of her's in Dallas, who told her that we should have the surgery  done there instead of the state we live in because he has had people coming to him from my state that had surgery here that went wrong and he had to fix the problems.  I don't think counseling is going to make me feel any better about any of this.  We need information and answers to our questions.   

It also didn't help that the first orthopedic surgeon my son went to told him things about the surgery to scare him into wearing the painful brace.  I guess it was effective.  My son remembered what he said and wore his brace like he was supposed to, but it doesn't help us now.   Would cognitive behavioral therapy help him forget all of this?  

There is nothing in our small town for kids other than sports or church.  I think if he would take a CLEP test to prove that he can handle college level work we could possibly get him in classes at a community college.  

iVillage Member
Registered: 07-23-2002

I totally agree with taking seriously the possibility of counselling. The degree of preoccupation with medical misfortune he has strikes me as unusual, even considering his grandmother's story. And regardless of whether it's unusual it's very much interfering with his happiness and his life right now. I could go through all sorts of reassurances like "if morphine doesn't control his pain, they'll switch to something else" and the like, but it sounds he is mired in anxiety and no amount of reassurance is likely to help: he'll just find other things to worry about. He would probably really benefit from learning some relaxation strategies, and getting some cognitive behavioural therapy that would help him break the cycle of obsessive thoughts that fuel his worries.

I think that at age 14 whatever solutions you find for his isolation and lack of direction are going to have to spring from his interests. What does interest him that he could move ahead with? Are there any robotics clubs or seminars? RC users groups? Does he enjoy programming? Digital art? Graphic design? Music production? Is he interested in history? Second-language learning? Social activism? Creative writing? Birding? Video editing? Political activism? Stop-motion? Skeet shooting? I'm just throwing random things out here, but it seems to me if he can identify a couple of areas he's interested in, he's at an age where he might have access to resources and people that could help him move forward. There may be clubs in your area, or an adult or two who are amateur [whatevers], or have some training and experience in his area of interest, or maybe there are places he could volunteer to learn more, or get a mentorship set up, or take a community college or extension course, or get involved with an on-line community or course.

I think it's pretty common for dysgraphic kids to have a much easier time of keyboarding. The muscle contractions aren't sustained: the different digits take turns, so fatigue isn't an issue.

If your SIL is saying things that feel judgemental to your ds, ask her not to. That's a no-brainer to me.

Miranda

Miranda
in rural BC, Canada
mom to three great kids and one great grown-up
unschooler, violist, runner, doc 

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iVillage Member
Registered: 05-13-1998

I'm sorry to hear things aren't improving and that he's lost his group of theatre friends. It's got to be frustrating to have had that brace for so long and not gain any benefit from it. I know you are in a small community but maybe instead of looking for homeschoolers or gifted students, you should be looking for a group that supports disabilities and medical issues. They may not have all the same issues you are dealing with but I get they'd be very supportive of the situation you guys are in.

I don't want this to sound bad but have you both considered seeing someone to help with the anxiety? Being nervous is totally normal but hyper-focusing on the worst case scenario, watching shows on medical mishaps, all that isn't going to improve the situation. I know you mentioned you can't take anti-anxiety meds but maybe at least having someone to help you two through this emotionally would help? 

Anyway, huge hugs to you both. The chances of a mishap are small and no reason to think it'll happen to him. I'll being thinking of you both!

iVillage Member
Registered: 05-18-2005

Are there any homeschoolers' organizations near you that you could contact to set up peer visits or study groups?  Scouting organizations may also have members interested in reaching out and interacting with your dc.  And tell your judgmental relative to go soak her head.  :)

Gwen

 

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iVillage Member
Registered: 01-04-2002

One more thing.  I have a college professor sister-in-law that quizzes my son about what he is learning and how he is learning it every time she sees him and seems very judgmental.   I get the feeling that she thinks he is not doing enough.  Her kids are gifted but did not have disabilities that cause pain and isolation issues that my son has.  I try not to let it bother me but it does.  The feeling of being judged makes the isolation and anxiety that my son and I are both experiencing worse. 

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