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Thread: Family pushing to change me

  1. #1
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    Default Family pushing to change me

    Just wondering if any other touretter's go through this with their families. I have TS, OCD, anxiety & SPD. First tic was at 5 with full body jumping, jerky tic with vocal grunts & cussing. I have been on disability since I was 22 & I have worked very little throughout my life. I am now 46yr, married for 16 years with an 11yr daughter. I get out to do certain things like-grocery shop, all errands that my household may need, walk the dog, driving my daughter to & from school & all her functions that she's a part of. Occasionally I will go out to dinner with my husband & friends. I feel I do really good considering my circumstances. I'm being told, it isn't enough & that my husband/daughter are living their lives behind closed doors because of me. I've told them to please enjoy life without me on the certain things that I cannot do, but this is not good enough for them. I feel that when it comes to them wanting to go to social outings & I say "I can't" they get mad & blame me for them having "no social life" but they're forgetting about all the other things that I get out of the house & do. My husband has made this our main topic in our therapy. Now our therapist is telling me to "push myself" & it frustrates me because when I push myself it makes my TS much worse & then I'm completely stuck indoors until it settles down & my family knows this. This is causing my migraines to be more frequent & it's very painful, I spend two days shut in a dark room throwing up for 12 hours until it passes. Is it unfair of them to be asking me to change or am I being selfish by not pushing myself more for them?
    I would appreciate any suggestions!
    Thank you
    Lisa

  2. #2
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    Default Re: Family pushing to change me

    Lisa,

    I am fascinated by your situation and to help understand exactly what is happening, a few questions come to mind.

    Is this opposition to your symptoms a recent development within your family? Has your husband always had difficulty accepting your symptoms throughout your relationship? Is there a collaboration between your husband and your 11 year old daughter in this?

    My husband has made this our main topic in our therapy.
    What is the nature of the therapy....is it connected with issues in your relationship?

    our therapist is telling me to "push myself" & it frustrates me because when I push myself it makes my TS much worse
    Is the therapist familiar with Tourette Syndrome and the involuntary nature of the symptoms and SPD? What exactly is meant by "pushing yourself?

    We know that Tourette tics are exacerbated by stress, and migraine is certainly triggered by stress as well. Is the therapist suggesting that you are somehow responsible for not "stopping your symptoms"?

    Have you ever communicated with some of the local Tourette support groups or Chapters in your area?

  3. #3
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    Default Re: Family pushing to change me

    Hi Steve
    No new developments. My husband has always been accepting of my TS except for vacations & social events. I have alway said this is my TS & not y'all's. My daughter has learned to be angry at the same issue with me. We're in therapy because of my lack of living which creates him to be angry. Therapist mostly works with anger management. Which is a good thing because when he ask me to "push myself" (if my day is bad then get out & meet someone new at a coffee shop or a park) I cross my eyes & steam comes out of my ears because I'm so angry at him. He clearly only knows TS from just reading about it. Lol This is the therapist that was brought into our marriage five years ago because I moved out & took a 6mo break. Durning that 6mo my tics were so light & there was no pressure on me to be normal.
    I do communicate with the TS chapter here in Texas. I am training a SD (Service dog) for Tourettes. Next year I will be volunteering at Texas A&M to help introduce TS needs to their program. Once I've completed the SD training with my dog Lucy, I plan to go to summer camps to introduce Lucy to the campers. My goal is to donate 100% of my time to train a SD for a child that will benefit from it. See I do have an outside life just not the one my family wants me to have.

  4. #4
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    Default Re: Family pushing to change me

    Lisa,

    You are no doubt aware that rage reactions and anger management are issues not uncommon to people with Tourette Syndrome and associated disorders. Our Forum has a section dedicated specifically to that topic

    My daughter has learned to be angry at the same issue with me
    I'm not sure I understand what your daughter is angry with..is it your angry responses or your Tourette tics?

    Therapist mostly works with anger management.
    Have you been receiving some cognitive therapy to help recognize anger triggers and to either avoid them or learn ways to lessen their impact? I had anger management issues that responded quite well to cognitive therapy..startegies I employ until today, several decades later!

    During that 6mo my tics were so light & there was no pressure on me to be normal.
    If you are under stress, there is no doubt your tic symptoms would be made worse. Although Tourette tics are involuntary, tic symptoms are influenced by both internal and external environmental factors. Internal factors include stress fatigue and excitement, but the external factors can be much more problematic as they usually involve the behaviours of others int he way they respond or react to our symptoms, as well as the way we anticipate their reactions or responses. This is where cognitive therapy can help in identifying these triggers, and, like anger management, we learn how to either avoid or to mitigate these triggers as well as lessening their impact on us. These are key strategies that are part of CBIT.

    I will be volunteering at Texas A&M
    Texas A&M is where one of the worlds leading Tourette specialists, Dr. Douglas Woods is on staff in the Department of Psychology. Dr. Woods, one of my personal heroes, is a leading researcher and developer of CBIT, the cognitive behavioural therapy designed for people with Tourette to help manage their tic symptoms.

    You may want to contact Dr. Woods to determine if CBIT may be appropriate for yourself. If you would like his contact information, drop me a PM.

  5. #5
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    Default Re: Family pushing to change me

    My daughter is angry because of my lack of social skills. I am trying so hard to better my social skills but it's hard when my main tic is vocal cussing That's not very acceptable by the public.
    I am receiving CBT for my anger & anxiety.
    Yes, I've been in contact with Dr. Woods & hope to meet him when I'm at the University.
    Thanks so much for all your help!
    I can't tell you how many people I've sent to this site because of you being on here.
    Lisa

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    Default Re: Family pushing to change me

    I am trying so hard to better my social skills but it's hard when my main tic is vocal cussing
    OK coprolalia, now I understand, Lisa!

    This is an area where I am pretty sure Dr. Woods can help, and using his strategies in teaching yourself to "do something else" instead of trying to "stop it" might just be something that might work for you.

    Vocal tics can sometimes be mitigated in satisfying the urge by doing something else like humming or singing or even whistling a tune.

    Another way of doing that "something else" is to use diaphragmatic breathing to your advantage. I've attached a PDF document to this post explaining diaphragmatic breathing and progressive muscle relaxation, both of which you might like to try. Also see this post

    There is a special way of employing diaphragmatic breathing for neutralizing vocal tics, and that is to breathe in by your mouth and out by your nose. That way you can relax your diaphragm, increase oxygen intake, causing your body to relax and at the same time make it impossible to express the vocal tic.

    If your total inhale exhale volume is, say from 1 to 10, then do the deep breathing from 2 to 8...to avoid possibly triggering a diaphragmatic tic...something we people with Tourette have to be conscious of.

    Additionally, when you feel the urge to express a vocal tic, press your tongue against the roof of your mouth and purse your lips while doing your deep breathing.

    These combined strategies work for me in managing vocal tics and might be helpful for you.

    And...when you see Dr. Woods, please say hello from me. I attended his training course in Toronto last Fall and met him again at a Tourette conference in Atlanta. He is truly a Rockstar in the field of Tourette!!

    Oh, and by the way....see if you can ask your daughter to be a little more compassionate and understanding..
    Attached Files Attached Files

  7. #7
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    Default Re: Family pushing to change me

    Wow. This is a delicate situation. I hope that you can get some useful advice.
    I'm being told, it isn't enough & that my husband/daughter are living their lives behind closed doors because of me. I've told them to please enjoy life without me on the certain things that I cannot do, but this is not good enough for them. I feel that when it comes to them wanting to go to social outings & I say "I can't" they get mad & blame me for them having "no social life" but they're forgetting about all the other things that I get out of the house & do.
    I think that the reason that this is not good enough for them is because they want to go out and socialize with you. They want you to be a part of what they do outside, and so what you do outside is not going to help.
    Don't get me wrong, I'm judging you or them. You know what you can deal with. I'm just trying to show you a different take on what might be happening. I strongly believe that a big part of TS involves social emotions being felt more intensely in some respects so it would not surprise me if you have sensitivities that are very hard to articulate or easily endure. But I see your family wanting to spend time with you in what you are saying and that gives room of optimism since the core of the situation is positive.

    My husband has made this our main topic in our therapy. Now our therapist is telling me to "push myself" & it frustrates me because when I push myself it makes my TS much worse & then I'm completely stuck indoors until it settles down & my family knows this. This is causing my migraines to be more frequent & it's very painful, I spend two days shut in a dark room throwing up for 12 hours until it passes. Is it unfair of them to be asking me to change or am I being selfish by not pushing myself more for them?
    That sounds really serious. I can't say if it is something you can push past or not. I have been pushing myself extremely hard in similar areas and I think that there will always be elements of my social sensitivity that will never go away. But I am finding different ways of interacting socially. It's sort of a matter of figuring out what sorts of situations or contexts are potential problems. I'm getting a better sense of what my weak areas are and can more selectively be "on guard" or relaxed. But I can't really say if that is something universally useful. It's possible that your situations and contexts will be different or something else might be different.

    My daughter is angry because of my lack of social skills. I am trying so hard to better my social skills but it's hard when my main tic is vocal cussing That's not very acceptable by the public.
    I don't think that anger is fair. Anger requires it to be your fault somehow and that is not really how TS works. I've gotten a lot better at "shaping" my tics but since I've never had copralalia I don't really know if that can be treated similarly. I hope that you discover that it can.

    I wish that society did not care about swear words. Frankly they are so void of any real meaning that I'm starting to wonder if we have an instinct for strong language that just picks something, anything to create the general ability to respond to emotion in language. If so that says more about society being lazy and unintrospective than it does about us.

    Good luck!

  8. #8
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    Default Re: Family pushing to change me

    Thank you so much Flutterguy!

    Yes you're exactly right! They want to be able to socialize with me. I try so hard to push myself into a new environment with them. They're very compassionate about my TS & stay in close proximity to me, so that if my coprolalia comes out they'll help divert the attention towards me. I do pretty good until something like this happens-I'm lagging behind my family & I feel a strong coprolalia tic coming on.

    I quickly check my surroundings to make sure the coast is clear. My body jerks, my face contorts & I grunt God Damn (pausing on the 4th count & repeat till I reach 16) halfway through this tic, I open my eyes and there stands a mother with her very young child. I quickly turned around & galloped away finishing my tic. The look of disgust on the mother & the fear on the child's face was devastating to me & I had caused that. I usually take moments like this to educate but my brain would only focus on my tic because it was interrupted.

    The whole time my family was down a ways & had heard me ticcing & they were trying to walk towards me to help. I know I cannot use them as my ticcing crutch but they were embarrassed & extremely embarrassed for me. I'm just glad that they didn't mind being seen with me as we exited the facility together. When something like this happens, I revert back to my safe way of living.

    I will not go out of my normal routine for a very long time & this causes the big frustrations with my family. My daughters anger towards my TS is based on this example I just wrote. She fears this happening at a school function & her classmates will be exposed to my coprolalia. And of course when I enter her school it makes my TS much worse. I would rather disappoint her by not going to her functions then to embarrass her with my TS.

    This situation is where my TS service dog will be a big help but I still have 8 more months of training to do with her. I'm going to start using the breathing technique that Steve suggested & hope I can join in on some of my families social outings & not have to wait 8 months till my service dog is ready.

    Thanks so much for commenting! Every bit of advice is so helpful!

    Lisa
    Last edited by Steve; October 4, 2014 at 11:39 AM. Reason: format

  9. #9
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    Default Re: Family pushing to change me

    Yes you're exactly right! They want to be able to socialize with me. I try so hard to push myself into a new environment with them. They're very compassionate about my TS & stay in close proximity to me, so that if my coprolalia comes out they'll help divert the attention towards me. I do pretty good until something like this happens-I'm lagging behind my family & I feel a strong coprolalia tic coming on.
    What if all of you discussed some preplanned outings that contained compromises? Are there some situations you are better with than others? Some groups of people and situations don't really care about profanity as much. It can be like practice if you are able to do something like that. Your family might not like the compromise situation as much, but if the goal is to socialize with you and the situation is not so bad it might work. Also some things like camping or hiking may not have to involve other people.

    I quickly check my surroundings to make sure the coast is clear. My body jerks, my face contorts & I grunt God Damn (pausing on the 4th count & repeat till I reach 16) halfway through this tic, I open my eyes and there stands a mother with her very young child. I quickly turned around & galloped away finishing my tic. The look of disgust on the mother & the fear on the child's face was devastating to me & I had caused that. I usually take moments like this to educate but my brain would only focus on my tic because it was interrupted.
    Yeah that sounds familiar in outline except for the tics, obsessions, and compulsions being mostly non-verbal in my case (I puff air and similar but that is not really something I would call a verbal tic). But what is it that you are really "causing"? "GOD DAMN!", "****", "****" and etc are trained into people in terms of reactions. Is it possible to try to see it as a social inconvenience instead of something "terrible" that you are doing to a child and mother? I know that the reaction that you get is what it is, but there is more than one way to look at it.*

    The whole time my family was down a ways & had heard me ticcing & they were trying to walk towards me to help. I know I cannot use them as my ticcing crutch but they were embarrassed & extremely embarrassed for me. I'm just glad that they didn't mind being seen with me as we exited the facility together. When something like this happens, I revert back to my safe way of living.
    That's just it. They are your family and they should be willing to help you in this situation since they want to socialize with you. Having more than one person willing to speak for you matters in a social psychology sense. Don't see it as a "crutch", it's more like "training wheels" as you look for your own solutions through experience. That is something like depression talking. Independence can be a goal if you want it to be.
    Family can help you turn a potentially bad social situation around on an offended party. In some situations a "would you be outraged at someone with Parkinson's accidentally knocking something over!?" can help, but that is a tricky thing and should be worked out well in advance.

    I will not go out of my normal routine for a very long time & this causes the big frustrations with my family. My daughters anger towards my TS is based on this example I just wrote. She fears this happening at a school function & her classmates will be exposed to my coprolalia. And of course when I enter her school it makes my TS much worse. I would rather disappoint her by not going to her functions then to embarrass her with my TS.
    That makes sense. There is comfort in routine. But routines are an illusion because life often requires them to be changed, or needs them to be if other needs are not being met. Such routines should also be like training wheels in that you should use them when you need to. Does your daughter really not understand that it's not a choice between "not ticcing" and "not doing something potentially embarrassing"? Dealing with something like copralalia is a long-term issue.

    This situation is where my TS service dog will be a big help but I still have 8 more months of training to do with her. I'm going to start using the breathing technique that Steve suggested & hope I can join in on some of my families social outings & not have to wait 8 months till my service dog is ready.
    Good luck.

    *There is an exception, "trigger words". There are people who have come to associate some words with physical or social trauma. I know that some people with TS have urges to use racial slurs and that is more complicated. There will also be some people who have curse words tied to trauma, the key here is to look for fear which will not be a problem because studies show that is an emotion people with TS have no problems identifying (on average, personal experience applies but we have no innate problems). Simple outrage I have less sympathy for.

  10. #10
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    Default Re: Family pushing to change me

    I'm new to this board and while no one officially has a TS diagnosis in my family, I have 2 sons on the Autism Spectrum and the youngest of those 2 has very complex, almost continuous repeatitive behaviors that resemble TS closely (in fact, I fail to see the difference between what he has and TS).

    Despite my kid's challenges, we have had pretty full lives. We manage to do that by first negotiating compromises. For us an example might be that if the family wants to go to the State Fair, but from a sensory perspective that is very overwhelming for my youngest to manage. We might work out a compromise where we go to the fair but take 2 cars.

    That way if the youngest gets too overloaded we can take him home early without spoiling the rest of the day for the other kids. We get family time at the fair, but the limits of our youngest are respected this way and no one is disappointed.

    I always carry in my purse a supply of business sized cards that explain " Please excuse my child's behavior, he has AUTISM: a neurological condition that affects his ability to communicate and interact traditionally with his environment at times.

    He is not spoiled, naughty, or misbehaving on purpose. We appreciate your compassion in understanding that he faces difficulties from time to time when in public, thank you for allowing us to manage his behavior as we have been taught to do so by his doctors and therapy providers."

    I paraphrased that, but that sums up what the card says pretty well. When our youngest on an outing starts acting out we hand out these little cards to anyone who appears to need some "education" as we are making our way to the car to go home. They have come in handy many times! People's attitudes immediately change once they realize there is a special need involved.

    Maybe you could have a little card printed that just says something like "please excuse my language, I have Tourettes Syndrome and it affects my ability to choose the words I want to use at times. I do not mean to be offensive."

    Such a card could give you a way to advocate for yourself without needing your family to do it for you. That might help with some of your daughter's feelings about the impact your disability has on her life. Its pretty normal for an 11 year old to be embarrassed of her family.

    Its probably nice to remove from her the responsibility of explaining your disability just to help keep your relationship with her in its best form.

    I hope there is something useful here for you, if not, I tried at least! I wish you the very best as you work to solve these problems for your family.
    Last edited by Steve; October 20, 2014 at 08:54 AM. Reason: format

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