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

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. 

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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Avatar for turtletime
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: 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 

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.  

Avatar for turtletime
iVillage Member
Registered: 05-13-1998

I still think counselling could be a benefit. The fact is, you aren't going to get answers for everything. There will always be an element of the unknown. What you may need are tools to help you both cope with that reality. If nothing else, having a living person in your community that you can talk to about all this may be a real comfort. It's just an option that can't hurt but could potentiolly help. I know the stigma attached to therapy but we're exploring those options for our DD 15 for some anxiety issues and I've been shocked by how many of our friends have done some therapy here and there to help through trouble patches. Your DS has been through a lot and he's been isolated on top of that. My little brother did years of therapy as a child and while it didn't help so much with his very different issues, as an adult, he's still grateful that he had that outlet because there were no friends to talk to about what was going on in his life and not everything is shared with parents, even in the closest of relationships. Just keep it in mind.

I do understand that it's scary when the people around are having health issues. We lost a dear friend to cancer last spring, my MIL was diagnosed with breast cancer and my FIL with prostate and skin cancers this past summer. We are their major support and it's a challenging time but I've been amazed at how positive everyone is staying. My DH has trouble with anestisia taking and I metabolize it very quickly and so it wears-off fast. We discuss this with our doctors in advance and haven't had issues since. 

Are there any support groups through the hospital? I know our children's hospital has several to offer. That might be another avenue to explore.

iVillage Member
Registered: 07-23-2002
I hope this doesn't come across as critical or belittling your concerns, but you do sound very anxious in your posts. I wonder if you and your ds might be feeding off each others' anxiety about the surgery. I mean, when you write down and focus on all your personal and vicarious encounters with the medical system sure, it sounds like a lot. But it doesn't sound outside the realm of normal to me. What you describe as your dh having difficulty coming out of anaesthesia and the nurse being irritated and the maze of hallways and so on ... I'm sure it was a bit stressful at the time, but that's just "being dopey after a general anaesthetic." It takes time to clear the drugs from your system and there's a wide range of normal. I've been in a similar situation and we just laughed about how loopy, confused and unsteady he was, acting like a drunk, not remembering anything he said or did, and all the rest. I hadn't thought about it in ages until today. It shouldn't be provoking fear: to me it's just a reminder that next time we'll be a little more careful about having him discharged from Recovery Room too soon. My family has had a lot of personal or vicarious encounters with cancer, biospies, death, surgery, pain and anaesthetics and if I wrote them down they'd make a big long list. But they don't provoke the kind of anxiety you and your ds seem to be experiencing around this. I wonder if you both might benefit from some help in dealing with anxiety. But I'm not sure your expectations for therapy are realistic: it's not designed to help you forget about things that are feeding anxiety, it's designed to help you learn to interrupt and diffuse the cycle of thinking that fuels the anxiety. In other words, the problem isn't the stuff that has happened: the problem lies in how the patient is (or isn't) coping with the stuff. If you're not willing you work to change your own way of coping, if you just want someone to magic away the things you perceive as stressful, that's not going to happen. Best of luck! I know the surgery is a big deal. I had a young friend go through two such surgeries 8 months apart a couple of years ago. As she said "I was already an expert at pain and therapy. So I rocked the surgery!" I hope your ds is able to do the same. Miranda

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

iVillage Member
Registered: 09-13-1999
I want to express my sympathy for all you and your son are going through. No doubt it's a lot and my 15 year old would have a great deal of anxiety about impending surgery, especially if she'd been in pain for so long and endured difficult treatments that were supposed to help but didn't. I think though that you'd be surprised how helpful therapy might be. We are an extended family of highly anxious people and we tend to over worry and over think pretty much everything. Therapy doesn't help you to forget your fears, it helps to put them in perspective and to give you mechanisms for dealing with the anxious reactions to real issues. My dad, who has been through far too much illness, smiles and says, "You control what you can and the rest you hope for the best." I do understand your fears about anesthesia. I've never responded "correctly" to dental anesthesia and I've also had overreactions to anesthesia. After a pretty dreadful experience with an epidural with the birth of my first child, I was an enthusiastic convert to the Bradley method of natural childbirth, lol. And I've had my white knuckle experiences in the dentist's chair when no anesthesia wasn't an option. But I find that the more I discuss the issue with medical professionals, the more I understand how to get the anesthesia I need, understand how it might affect me and then put the fear in its rightful place and to deal with my own reactions. I sort of woke up during a colonoscopy recently and had been advised that this can sometimes happen, that there's no discomfort at all and that the surgeon can show you onscreen what she's looking at in the colon if you are interested. I was plenty loopy but because I knew what to expect, I was also positive and kind of excited to watch the monitor. (Of course I remembered none of it afterwards except that it was really cool.) And we too have had many difficult illnesses throughout my extended family. Knee surgery is notoriously difficult and the recovery is painful and extended. Your grandfather's experience is pretty typical. My father-in-law recently finished a course of radiation for prostate cancer and my cousin is still going through chemo for breast cancer. My own father has had cancer, heart surgery (at the age of 48), gall bladder surgery and repeated laser surgeries for his eyes. My very stoic mom had back surgery that left her miserable for months of difficult recovery. I tell you this not to demean your own experiences but to help you realize that we are all in this together. In other words, I hope it helps to realize that your experiences aren't as isolated as it feels to you. It's really easy to get drawn into the fears of a 14 year old and it's also easy to feel that your experiences are so out of the norm that others won't understand. Best of luck and hugs! (Give counseling a try.)
iVillage Member
Registered: 01-05-2005

I'm so sorry to hear that your son did everything he was supposed to do and is still facing surgery. That must be incredibly disheartening for him (especially after the doctor tried to scare him into wearing the brace!). As far as school, I think you are doing the right thing in backing off the things/subjects that scare him right now. And, as hard as it is, I think you need to set a limit on information gathering. I'm NOT saying that you should go into your son's surgery blindly, but if you worry about every complication, you will drive yourself insane. I've had two surgeries for skull tumors, but the first one was almost 20 years ago and well before the internet exploded. I do wish that I had better information going into my first surgery, but honestly, I've had to limit what I research because too much information just upsets me. Obviously, it's natural that you'd be thinking of it now (I am having an MRI next week and so I'm thinking about my own situation way more than I usually do), but at the same time, you will feel completely overwhelmed if you don't limit it.  Here are my thoughts from my own experience:

1) I tried to set limits when I would research, Google or even think about it - so, this afternoon from 2-3pm, I'm going to spend time on it. Then, whenever my thoughts started to wander, I'd try to tell myself to wait until 2pm (this sounds weird, but it really worked for me).

2) Bring a written list of questions to the doctor and try to make them related to your specific situation. Less of "I heard that a lot of people in this area end up with complications," and more "I have concerns about anesthesia. As you can see by this list, my father had this specific issue..  my brother had this specific issue. If this happens with ds, what is your plan B?"  Ask if there is a nurse or office manager who is available to handle your calls. My surgeon was wonderful and extremely-highly regarded at a major hospital, BUT that also meant he wasn't always around. His staff was amazing though and always had time for me.

3)  Find someone to talk to - NOT your son. He is gifted, but he is still 15. His fear will feed off your fear. My dad and I have a close relationship and can talk about anything, but I still needed him to be my cheerleader during the last surgery. Even with dh, who was wonderful, I didn't want us to feed off of each other. I didn't get professional counseling, but I became close to a Stephen minister at our church who provided a ton of emotional support. You need to have someone with whom you can share your worries, your fears, your struggles. Obviously, you can post here, but I needed someone who would listen to me for far longer! Many communities have a "Crisis Counseling" hotline. I understand that they won't fix any of the real and serious health issues you are facing, but it definitely helped me face surgery when I was completely freaking out.

4) Consider getting a second opinion elsewhere if that will make you feel more secure. Are you able to visit friends or family in a major city with a good teaching hospital? Even my MIL is coming to Chicago (not really that far from her home in IN) to visit Northwestern or Rush or Loyola and get a second opinion for her knee surgery. It's fairy routine, but she wants to make sure she is doing all she can to ensure the optimal outcome. Remember, too, that it's natural that people who have issues or complications will go to a major hospital to fix them, but there are thousands of successful surgeries at your local hospital.

5) I don't have any brilliant advice about your son's isolation. :(  Can he join any online groups?  Take an online class?  As far as school, don't worry!  Your son can take biology for the rest of his life. Focusing on his health right now is what you need to do. Just make sure that he has some distractions. Frankly, I think watching old movies would be more beneficial than googling complications from surgery (again, I speak from experience... this is a bad path to go down). I can only imagine that it's hurtful and upsetting when your SIL quizzes your son, so you and he need to just mentally prepare beforehand and maybe even decide on a few flip answers. As a college professor, she probably doesn't like to think that in some cases, teaching at home is the right answer. Just keep reminding yourself that in your son's case, it is. You know what's best, you've made your decisions, keep your chin up and don't let her get you down. If necessary, grit your teeth and repeat over and over again, "this is what we've decided is best for ds right now. So, how about them Cubs?" or whatever other small talk you can come up with.  And then when she continues, "well, this is what we've decided...." Repeat. Repeat. Repeat. Grit teeth, smile and show your son that you feel confident (even if inside you're stressed, second guessing and scared).

Good luck and feel free to vent here when you need to!

 

iVillage Member
Registered: 01-04-2002

Thanks everyone.  I know that one of the first things my son does when he wants information about something is look it up on Wikipedia, so I looked at the scoliosis article to see what he most likely saw.  One of the things it said was that the complication rate for spinal fusion surgery was 5% but according to the latest evidence the rate of complications was far higher.   The scoliosis message boards, that I am also sure he looked at, contain stories of people who did have complications and are in more pain and have more disability than they expected as well as the success stories.  Just yesterday there was an article on Psychology Today about the risk of nitrous oxide.   I am printing out articles like this and looking for more info that will help me ask the right questions when we see the geneticist and surgeon next month and we can make the best medical decisions that we possibly can.

I have encouraged my son to play computer and video games to keep his mind off of things but he still reads the news every day and he still reads a lot online, especially about science and technology.  We used to read Science Daily every day and they have articles about medical things.  I know he will probably read more articles that cause anxiety.  I hate to limit his reading.  We are only going to work on preparing for the history clep test and taking a break from everything else.    I am staying away from relatives and their stories of pain as much as I can.  

I am trying to talk him into trying a church youth group and he does not want to go.  They have superbowl parties and do lots of sports things for fun that my son either has no interest in or can't do.  I have not found any place here where he fits in.  Our small town has a problem with bullies at our local school and I think some of them even go to church.  My son doesn't want to hear preachers talking about how sinful gay people are when he sees this as a difference people are born with just as he was born with a disability or how we are responsible for our own pain making him feel as if they think he is somehow more sinful than people without pain.  I can understand this but I keep thinking there has to be a church here somewhere that is not like this and we just have to keep looking.  He has online friends but it just doesn't seem like enough.  

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