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Pgator5 Married w/ three kids. Andrew-20, Katie 16, Jeffrey 16 (HCM) diagnosed 3/12 And myself HCM also. Find out more about Pgator5
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  • Feeling guilty

    Hi,
    I am the mother of 3. My oldest son is 21, and my boy/ girl twins are 17. My 17 son, Jeffrey was dx March of 2012 w/ obstructed hcm. He is overweight and he has basically become inactive this whole past year. He also has aspergers. His passion is computers and the game runescape. So basically that is his life. Jeffrey was extremely active in middle school and then when he was in his freshmen year he started being bullied and became very sheltered. We pulled him out of school and he started online classes. He is way beyond those classes now and I am trying to get him to get his GED so he could maybe take online college classes.

    In Septemeber, Jeffrey got an ICD. He is a very intelligent kid. He is scared, he is constantly telling me that he can't do anything anymore. I am so saddened by seeing him day after day not be active or involved in anything. I do NOT know where to start or even make him understand it is ok to walk, and do things. I feel extremely guilty as his mother, I want him to be happy and healthy, but yet productive. If anyone watches The Big Bang Theory, that show defines the quirky little was of aspergers. He gets something set in his mind it stays there. So with that Jeffrey heard someone say he could die if he does too much.

    I feel like I just need some real direction and advice of where to even begin to get him on the right path. To get the whole family on the right path!

    I am remarried and my twins live with there dad and I see them mostly everyday. We are still very much a family. Their dad and I are very good friends and really are at a lose.

    Please anyone with some advice or words of hope.
    I know there are people out there that will say, take away his computer, make him do this but until you have a child that has aspergers you really can't understand. He is the smartest, funniest, sweetest kid you will ever meet- but getting him to do something he doesn't want to do is impossible.

    I hope that I can find at least one person out there can be my friend and understands.

    Thank you,
    Peggy

  • #2
    Re: Feeling guilty

    Hi Peggy,
    Wow you've got a lot on your mind these days. Neither I nor anybody can give you all the answers right now but this forum is great for offering moral support. Jeffrey is obviously a very bright kid but that won't necessarily help him deal with things he needs to deal with. I don't have any evidence to support this, but I have heard (and I sort of believe) that people with heart problems are more likely to be depressed. Jeffrey's reaction to his HCM s understandable. 17 is a complicated age imho-- its approaching adulthood but still quite a ways to go. Its important for him to find out that most people with HCM live long, productive lives and HCM does not have to be a showstopper. How to make him understand that... I've no idea, but hang in there.
    Dave

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    • #3
      Re: Feeling guilty

      Peggy,
      I can only begin to imagine your frustration. As a teacher, I have had Asperger's students over the years. I also have a nineteen year old nephew with Asperger's who loves video games.

      You said your son is obstructive. His activity level will depend on how symptomatic his obstruction is. It's important he understands that keeping the rest of his body as healthy as possible through exercise and activity is the best thing he can do to help his heart.

      Another thought is that it might be helpful for your son to see a therapist who can help him through this challenging time. Adolescence is tough enough, add Aspbergers and then obstructive HCM with an ICD and it's more than enough.

      Although we may not be able to fully understand what you are going through, you certainly have many friends here at the HCMA. Please don't hesitate to ask for advice or just vent.
      Karen

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      • #4
        Re: Feeling guilty

        You might want to reach out to the offie to see if there is another teen/young adult that would be willing to talk with Jeffery. Might help.
        Linda S
        Onward and Upward !

        Diagnosed 4/07 HCM with fixed & dynamic obstruction
        Myectomy with resected cordonae tendonae 4/08 CCF
        ICD 10/08

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        • #5
          Re: Feeling guilty

          I have hcm, and a kid w/ Asperger's...age 9. Since I'm gene+, we're going to have him tested soon, but as you probably know, there's a good chance that he'll get the hcm, too.
          I don't have much advise for you, but I do know exactly what you're talking about re: their tendancy to get stuck on things.
          AND, taking away the computer is most definately NOT the right thing. (you're right: people don't understand this unless they've been there).
          One thing I would suggest is to seek out a therapist who specializes in dealing with Asperger's; We found one recently, and he's been just wonderful.
          dx'd HCM @age24, (1989) |Gene + |no family history

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          • #6
            Re: Feeling guilty

            Hi Peggy,

            Welcome to our community. I hope that we will be able to put some of your son's worries at ease. I have two ideas. First of all, as others have suggested, do call the HCMA office. They may be able to help you figure out some tricks to help your son feel better about his diagnosis. As someone else suggested, they can even hook him up with some other HCM patients in his age group who might be able to reassure him in a way that you can't as the mom.

            Another thing you could do is to plan to attend our annual meeting in the beginning of June in New Jersey where your son could hear from experts about how to live well with HCM and could meet many other active people living with HCM. I myself was obstructed and have an ICD. I had a myectomy almost 7 years ago, and this past weekend I went hiking on two mountains. I don't skydive, or do extreme sports, but I go to the gym 5 days a week and live a normal life. If he were able to see others with HCM living their lives out of his own eyes, maybe he would be able to break out of his rut.

            Do call the office at 973 983 7429. Best wishes for a happy new year.
            Daughter of Father with HCM
            Diagnosed with HCM 1999.
            Full term pregnancy - Son born 11/01
            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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            • #7
              Re: Feeling guilty

              Calling the HCMA office is an excellent idea.

              Gordon
              Myectomy on Feb. 5, 2007.

              Comment


              • #8
                Re: Feeling guilty

                Wow! so many HCMers with autistic/ Aspergers kids. Count me as one of them, my oldest son Chris. Asperger's kids don't process information the same way neurotypical people do. Reassurances of all kinds, will not necessarily do what you want it to do. But every aspie has a way of understanding things , you just have to work harder to find it. My son processes lots more when I can compare things as if in an analogy. "A" is to "B"...... like "C" is to "D" to differentiate degrees of importance. My Son is also a computer guru- his fascination is with Linux of all kinds. If your son has any advisors or friends online he trusts, maybe you could enlist their support in trying to get the message across that it is ok to do some active stuff. Good Luck! JudyA
                Dx Dec 2005 - HOCM with gradient of 80at rest, provokable to 150. Alcohol Ablation on Dec 22, 2005.
                Echos in April 2007 shows 0 gradient at rest, but gradient of 100 on provocation

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