a response
Question:
In article <4m6iml$…@dub-news-svc-5.compuserve.com>, – Hide quoted text — Show quoted text -<103076.2…@compuserve.com> writes: > I was intrigued with the posting about the child that says "my body made me >do it." I have been hearing my son say that for some time and now it makes >sense to me, since we have a diagnosis of TS. I read where Jackie said too, >that her son would sit with a full plate of food, and not be able to eat >because "the feeling would not let him". These things are all sounding very >familiar. I told my son tonite that he had TS. He began to talk about the >movements, and we had a good talk. I asked him later if he felt better about >my telling him or worse, and he smiled and told me he felt a lot better! I >thought it may make him feel worse, but I am so relieved that I told him. I >have been debating whether to do so now for over a month. Thanks for letting >me vent.
Hi, Susan, It was my Julie who said "my body made me do it". Yesterday she had a huge tantrum, and when I asked her what was happening to her during the outburst, what she was feeling like, she said it was like she has an angel on one shoulder and a devil on the other, each competing for her attention. She said it’s like the devil is shouting, "Go ahead, Julie, scream at your mother, let it out, it feels good." I thought this was especially interesting in light of the original theme of the thread, "children hearing voices". Another mom had commented that her son said "the devil made her do it." Much luck with your son! Sounds like you two are on the right track. How old is he? Regards, Kim
Response:
….Hello, for the past two years I have been reading this newsgroup and sometines posting (between exams and papers!) and have noticed a disturbing trend among letters posted by parents of children with TS. So many of you seem to be torn on whether or not to inform you child about Tourettes and what it is. Others seem confused about if they should even tell their child or not! Personnally I do not understand why this is so difficult. Yes, it is possivle to deny your child’s TS as long as you do not tell them about it, and sometimes learning about different types of tics can trigger the development of new ones, but all of these issues seem to me to be dealing more with parental fears and worries than those of the child. Imaging yourseld to be a 7ish year old and you do all of these funny movements, make noises, and sometimes feel like your are not in control of your own body. You are scared, confused, embarrassed, and probably quite ashamed. After all, other kids don’t do those funny things…and why have all those doctor appointments been made? Am I going to die? Is something wrong with me? These are the types of questions youare dealing with. The problem is, noone is telling you anything and you are probably to timid to ask anyone. Whenever I read posts or talk to parents wno are unsure about how or even if to tell their kids about TS….I get so angry. Yes, it is probably the second hardest thing to explain to kids (besides sex)….but trust me, they willl ask queations about as much as they are ready to handle. No, you don’t want to go into an explantion about neurotransmitters and such but I have found an effective anology (for adults also) I in terms of a car and its engine. If you have Tourette Syndrome, your engine sometimes turns itself on and your body drive itself. I have also found that explaining it as a positive thing (people with TS just have brains that work harder than most people’s!) also helps a lot. I am not an expert, I don’t have a PhD….I’m still working on my BA! But I do have Tourette Syndrome and remember growing up and not understanding and being confused and afraid and embarrassed. The day my parents sat down and explained to me what TS was and tosd me about it was so wonderful! I knew why I did those noises and movements and the doctor was very kind and friendly. Now as a 20 (almost 21!!!!) year old junior in college and majoring in Political Science I consider myself to be reasonably well adjusted thanks in large part to my parents….they taught me how to be myself, live life fully, and how to enjoy it. Also, my mom and dad empowered me to be my own advocate and not have to rely on them to deal with teachers except when necessary. Parents, PLEASE, teach your children, knowledge is power…don’t be afraid of what the future holds lfor them, your fear will be passed on to them. Whatever their dreams, encourage them…..nothing is impossible. When I deceided to pursue a military career, many said "They won’t let you in with Tourettes!" Now, I’ve been awarded a camp training slot at ROTC advanced camp this summer, and hope to contract next fall. Love your children, let them talk to others with TS….going to a TS summer camp for a week changed my life! Your children are not alone…and neither are you. Please excuse any typos, It’s finals week ACK!!!! Jennifer Deery "Keep on ticcing!" e-mail address during the summer: Xar…@aol.com
Response:
>Parents, PLEASE, teach your children, knowledge is power…don’t be >afraid of what the future holds lfor them, your fear will be passed on >to them. Whatever their dreams, encourage them…..nothing is impossible. >When I deceided to pursue a military career, many said "They won’t let >you in with Tourettes!" Now, I’ve been awarded a camp training slot at >ROTC advanced camp this summer, and hope to contract next fall. >Love your children, let them talk to others with TS….going to a TS >summer camp for a week changed my life! Your children are not alone… and >neither are you.
Bravo, Jennifer, Bravo. No one could’ve said it better. KAT in CT
Response:
Bravo from me also. The first thing we did with our daughter was educate her, and she was 8 years old. In fact, the neurologist explained it very simply to her, told her she had ts, that tics would not kill her, she could take meds if she wanted, that it wasn’t her fault, and that others had it. We took it from there. Did the same with my son at that time…he understood at age 5 and now understands even more since his dx of ts/ocd. Knowledge is power. Nanci
Response:
z4…@ttacs.ttu.edu wrote:
Hi Jennifer…., Wonderful post, and I couldn’t agree more. Where have you been.?? Hope school is treating you well, or at least I hope you are treating school well!!!! When our boys are grown up, I sincerely hope they think as much of us as you do your parents. Education is empowerment. Kathy in Canada Please, if responding via email use the following address: hsh…@wpcug.wpcusrgrp.org
Response:
I was intrigued with the posting about the child that says "my body made me do it." I have been hearing my son say that for some time and now it makes sense to me, since we have a diagnosis of TS. I read where Jackie said too, that her son would sit with a full plate of food, and not be able to eat because "the feeling would not let him". These things are all sounding very familiar. I told my son tonite that he had TS. He began to talk about the movements, and we had a good talk. I asked him later if he felt better about my telling him or worse, and he smiled and told me he felt a lot better! I thought it may make him feel worse, but I am so relieved that I told him. I have been debating whether to do so now for over a month. Thanks for letting me vent. Susan M.
Response:
<103076.2…@compuserve.com> wrote: >. I told my son tonite that he had TS. He began to talk about the
movements, and we had a good talk. I asked him later if he felt better about my telling him or worse, and he smiled and told me he felt a lot better! I thought it may make him feel worse, but I am so relieved that I told him. I have been debating whether to do so now for over a month. Thanks for letting me vent. >Susan M.
Nice goin’, Susan. It’s very important that he have a name for his disorder other than "mental" or "crazy" or "nervous," all implying something is wrong with him that he could stop if he wanted to (although we know that’s not even always possible for those conditions!!). I’m sure you are relieved. And so is he. Keep talking with him. And keep him talking with you. You’ll both need that, and come to appreciate the value of it as time goes by. KAT in CT
Response:
Dear Susan, I’m so glad your talk with your son worked out so well. I know this was hard. Good for you! Gail ><103076.2…@compuserve.com> wrote: >>. I told my son tonite that he had TS. He began to talk about the >movements, and we had a good talk. I asked him later if he felt better >about my telling him or worse, and he smiled and told me he felt a lot >better! I thought it may make him feel worse, but I am so relieved that >I told him. I have been debating whether to do so now for over a month. >Thanks for letting me vent. >>Susan M.
and Kat said: – Hide quoted text — Show quoted text ->Nice goin’, Susan. It’s very important that he have a name for his >disorder other than "mental" or "crazy" or "nervous," all implying >something is wrong with him that he could stop if he wanted to (although >we know that’s not even always possible for those conditions!!). >I’m sure you are relieved. And so is he. Keep talking with him. And keep >him talking with you. You’ll both need that, and come to appreciate the >value of it as time goes by. >KAT in CT
