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: 04-26-2013

The surgery is next week.  At the pre-op appointment the doctor told us about the risk of death and said it was about the same as the risk of having a car wreck on the way home.  Thankfully, my son did not want to stay for the tour of the hospital rooms and we got home about 15 minutes before a tornado crossed the road.   I think anxiety can be a good thing sometimes.   I think some people don't have enough anxiety and take too many risks.   I try to only take those risks that are unavoidable.  My son is the same.  I think his anxiety will help him follow doctor's orders and not take risks with his health.   People have died because they did not get a diagnosis--people like Jonathan Larson who won posthumous awards for the rock musical Rent.

My anxiety about my son not having the right diagnosis caused me to spend hundreds of hours online looking for answers  and it finally paid off.  I finally got a doctor to listen to us and to refer him for testing.  He has a connective tissue disorder called Marfan Syndrome.  It does not affect intelligence, it is not a learning disability, but the pain it can cause and the need to take frequent breaks can make it harder to learn.  

I sent an email to someone whose family is very active in the scout group my son had to drop out of several years ago because we couldn't get a doctor's statement limiting the hiking he would be required to do.   I told them we could finally get that now because he has a heart condition and is not allowed to push himself physically.  If I had not had anxiety and taken him out of scouts, he might have pushed himself physically and he could have died.   I also intend to send a message to the martial arts instructor who would not let my son take a break even though we told him about the scoliosis and low muscle tone that made it necessary for him to take breaks.   The instructor did not want parents to watch.  My anxiety caused me to check on my son and it was a good thing.   I sent an email to a former P.E. teacher who posted something on facebook about raising wimps and helicopter parenting.  I told her about the verbal bullying that sometimes happens in school when people don't understand this kind of disability and the judgmentalism my son faced in kindergarten.  I try to be nice because my intention is to educate people who are teaching kids, but I feel even more shunned.  When I tell people about it they say they "will pray or us" and then they ignore us.  

I also intend to send letters to the doctors that would not give us referrals to specialists that could have diagnosed my son properly.   It made me so sad when I found out that having a connective tissue disorder made it less likely that bracing would work and my son went through so much unnecessary pain and isolation because of the brace.  

My son and I now know more about the risk of aortic dissection.  The cardiologist said this could happen at any time even to kids but is more likely to happen in adults.   I found out that I have the Marfan gene also so I could be at risk.  I have to learn to stay calm to help my child knowing that my child will be in pain for weeks.  The doctor told us that pain medication will not take away all the pain after surgery.  Knowing this is hard when you have anxiety.  

After he has recovered from the surgery, I will see if he can take classes at a community college.  This would be the only place where he could learn things he is interested in and hopefully find friends with common interests.  They don't usually let kids under 16 take classes, but I will try.

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

Has he tried TUMBLR? It's pretty much just picture blogs but they can be very specific and they do create online communities. My eldest has really valued her TUMBLR interactions (her blog is on Sherlock and Dr. Who mostly... a little Arrested Development and Harry Potter thrown in.) It's not a "safe" community in that you can still get some wierd posts and must be careful about the info you release. However, DD's been smart about it and has a couple "pen pal" sorts from other countries that she can talk politics, government, world events AND her geeky British passions. It fills a particular social niche she can't seem to find amoungst peers at the moment. Again, something to be careful about but if he has and specific interests, it may be a way to connect. 

iVillage Member
Registered: 04-16-2001

Also sorry your son is facing so many challenges.  You have received a lot of good advice.  The internet can be a wonderful source of information, but also provide the worst-case, scariest scenarios.  Dealing with chronic pain can be so incredibly frustrating because there often are no easy answers.  I hope the surgery is a success for him.  We know a boy the same age that got the surgery a year ago and has done well. 

As to the isolation, is he into games like playing Magic, D&D, or even chess?  Magic often attracts boys (and some girls) that may be described as more on the "nerdy" side and games are often run at local card or game shops.  I know you live in a small town, but there may be a nearby gaming spot where he could interact with others.  Some libraries or other organizations run chess clubs. 

Depending on when he is having the surgery, I would also look into a summer program for gifted kids.  He can take the SAT or other test for one of the talent searches and become eligible.  Some of the programs are quite costly, but there is scholarship money available and his story may help in that regard.  Being away in an environment with other gifted kids studying a subject of great interest may be a social boost and help him see there are others in similar situations. 

Churches can be difficult, especially in rural areas, if your or your son's beliefs do not match those of the congregation.  Is there a Y within driving distance?  Ours runs a Leaders Club.

The other thing to consider, once he he is healed, is looking into school next year - advanced in high school or community college.  Bullying is often much less of an issue in high school.  While there may be a group of difficult or nasty kids, he may find that in the honors or other higher level classes he is isolated from those kids.  Also, he is older and could be better equipped to handle those situations.  He may not have any interest or the course work could be too easy, but if there is any flexibilty he could find some support and interesting work such as science labs or computer classes that may be harder to duplicate at home.  I know this may not be the case in your town, however, but hope he can find something that will support him outside the home. 

Mostly, just wanted to send you and your son support and hopes for better times ahead. 

iVillage Member
Registered: 01-04-2002

Thank you very much.  I was hoping that you would comment since our sons are so close in age and have things in common.  Your advice is good and this is what I needed to hear.  I needed to know that someone similar to us went through a similar challenge and made it through.  I wanted to hear tips on getting through it.

I will be the best actress I can be.  I will need to stay "in character" for five or six days because I will not leave as long as he is there.  I will remember to smile and act normal even if I am pain,  just as my son's acting teacher taught him.    I know you understand the pain of seeing your child in pain.  

The first time my son had anxiety was when he was four and a half and his very smart, kind, loving grandmother who lived next door to us went in for surgery and left the hospital not able to remember who he was.  He had to keep telling her that he was her grandson.  He patiently repeated things for her and seemed to understand what she needed when she had trouble communicating.  She had no short term memory and had lost many years worth of long term memories.   We told him it was because of brain damage and every time he bumped his head he worried that he might damage his brain.  

About the time he got over worrying about that, about six months later, his dad was diagnosed with cancer and had to have surgery.  He was really worried about his dad, not just because of what happened to his grandmother, but because even at five he knew cancer could be fatal.   The cancer surgery had been on his dad's neck so it was very visible and after radiation therapy his dad would bleed easily and this was kind of scary for a five year old to see blood start dripping from his dad's neck.  From that point on, my son was worried that he would get cancer, because he read science books and had read a little about genetics.

It wasn't until my son was 11 and developed scoliosis and migraines that he started having more anxiety about medical issues and it seemed like the doctors didn't have many answers for us.   That is scary when the doctors can't tell you why something is happening or how bad it will get or if you are likely to have more unexplained bad things happen.  We learned the word ideopathic and I really don't like that word when it seemed that my son's PCP didn't want to give us referrals to specialists that could give us answers, until now. The brace my son wore every day made it impossible for him to get enough sleep and not getting enough sleep makes his anxiety worse.  I am the same way when I can't get enough sleep, plus it affects my blood pressure and I know I won't get much sleep in the hospital.  I am worried about how I will deal with this. 

My son never did LEGO but our city manager, who reminds me of my son in other ways, is very into LEGO and I have thought of asking this guy, who I only talked to briefly a few times, to show my son his LEGO collection as well as talk to him about his job.   I think this guy might be a good mentor for my son because he is obviously smart and has interests that are different from the average person in our small sports obsessed town.  In fact, it was the city manager who noticed my son several years ago at a church social event where my son sat alone with none of the kids talking to him because he couldn't do the physical things they were doing.  He came and talked to my son and asked him if he did LEGO and told him about his collection and how fun it was, but again it was several years ago and I feel a little funny about asking him now, but maybe I should.  At that time my son was still able to do musical theater so I felt he had enough social interaction so I didn't worry about it.  One thing my son was interested in years ago was Yu-Gi-Oh tournaments but he never had time to do that and I don't think he is interested in that now that he is older.  

Thanks again for your advice and I hope you and your son are doing better now.    

 

 

 

iVillage Member
Registered: 04-27-2000

Oh, sweetie.  I'm so sorry about all of this.  My 14 year old just spent the past two years dealing with multiple hospitalizations, spinal taps, IVIG, etc. It was very stressful and parts definitely were not pleasant for him. Your son is highly attuned to even the slightest change in you (same goes for me and my son).  If you are anxious, he sees it and feels it.  The best thing you can do for him at this time in his life is to quickly become the very best actress you can be.  If you behave/act as if you believe all is well, that you are thrilled that the surgery will correct the problem so everybody can move on, etc. eventually he, and you, will start to believe it.  I guess I am saying fake it 'til you make it.  

Let me share a story.  When my child gets IVIG he does a complete jeckyll and hyde routine.  At first, he becomes incredibly hostile, cursing, throwing things, breaking things, threatening, etc.  Later, he acts like a four year old after too much cake at a party -laughing so hard he falls off the hospital bed, shooting water out of drinking straws, etc.  The first time he ever had the treatment, needless to say, I was more than a little shocked, as I had never seen anything like this before.

My adorable (12 year old at that time) child told me to F-off, ripped the jacket I was wearing, then threw a pitcher at me (luckily unbreakable).  He is very much like your son and would never dream of behaving in such a manner.  My husband suggested I take a break and leave the hospital room, which I did.  I was pretty much freaking out.  One of the hospital psychiatrists was in the hallway.  He walked over and said "everything is completely fine."   I told him that, indeed, it was not - and proceeded to recount what had just transpired.  He said, "Yes, but you are going to walk back into that room with the most calm, serene look on your face that you can muster, and you are going to act as if what just happened did not happen.  You are going to chat with your husband in the most normal voice in the world.  Tell him you want to remember to put rice on the grocery list. Then ask your husband to tell you again about that bicycle trip he went on during high school.  If you are freaking out, just imagine how your child is feeling.  And he feeds off of you.  You need not to be freaking out.  So stop.  Be a good actress and get yourself back in that room and help your child to know you think everything is just fine."  

I did what he said and my son immediately calmed way down.  It was a huge turning point in that hospitalization.  It was so clear that DS felt the change in me, and the change in his mannerisms was visceral.  Once I saw how much it helped DS when I remained calm if he was stressed/anxious/out of control, I was able to keep up the act - and most of the time I even actually believed it.  

I have a question for you - it may not be germaine, but I feel like I have to ask anyway:  Was your DS always so anxious, or do you remember it starting at a specific time?   The reason I'm asking is because overnight onset anxiety was the first sign that our son had an autoimmune disorder.  Just making sure there's no underlying medical cause for the way he's feeling.  

As for finding socialization - does your son enjoy LEGO?  Many cities now have their own Lego User's Groups, mostly teens and adults.  They have monthly meetings, do public shows and displays, etc.  My son has greatly enjoyed participating in our local group.  

Please e-mail me offline at suzanne.spector@gmail.com or find me on facebook if I can answer any questions for you about the medical stuff.  Sending virtual hugs - Suzanne 

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.  

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: 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: 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 

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.

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