Just checking in
Question:
KC wrote: > In the early years I was NO example to anyone. I remember feeling as though > she was doing things on purpose just to cause problems for me..
She wants others to forgive > her disruptions of their quiet life, and she forgives the rest of us for > falling short of where we know we should be. > When she was in middle school I learned to pay more attention to her > solutions.
I pulled out a few random quotes that struck me. This was a very inspiring thread. I vote that we create an Em fan club. I’d put her right up there with Katy as a child I can learn a lot from. > I still have a lot of guilt over the > early years and they can be difficult to hear.
When I see something like this, I’m not sure whether it is a request for: validation – in which case: I’m with you on that one. Although Alex is only (almost) 9, I’ve managed to accumulate a lot of "if ony’s". someone to point out how much you’ve done and remind you that no one is perfect. So, in that direction, I’ll just say that you need to acknowledge what it was really like. You didn’t know then what you know now and you did the best you could. Unfortunately, sometimes the best just doesn’t seem good enough. I remember you, too, even though I’m relatively new. Catchy by-line. lesliedelong
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"Leslie DeLong" <LeslieDeL…@alum.mit.edu> wrote in message
news:LeslieDeLong-0303020824050001@net243-81.med.yale.edu… > I remember you, too, even though I’m relatively new. Catchy by-line. > lesliedelong
My explanation for the by-line: We have no support groups closer than 2 hours from here, and for a variety of reasons it has never been possible for me to take even a little advantage of them. We have no support system, medical or otherwise in our area. The hospital has NO information, no one to refer us to, and no interest in helping us out to find information. The school system just gave us a blank look when I said "Tourette". What we did have was a Dr. who was willing to admit that he didn’t understand TS and was eager to send us to someone who knew something about it. So we started to invent. Then I found the NTSA, and ordered brochures to read. Then we got on the internet. Then we started passing on information to the Dr. and the schools. But nothing seemed to really fit my daughter. So we invented and tweaked and changed and tried and experimented, and invented some more. Nothing different than what I read every other parent at a.s.t. is doing. And what every adult at a.s.t. has to do in their own life. And what the kiddos themselves are doing without even knowing it. So I guess we are all inventers… I just grabbed the by-line first! still inventing (you know those unbreakable-twist-and-squish-and-pull-and-they’ll-never-break glasses frames? Well they break. Gotta invent a solution for that next…..) KC
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Grrr wrote (3 times) >It sounds like you’ve spend a lot of quality time with her. >I bow down to your own humbleness.
This message was so great, I just wanted to see it ONE more time. Truly. Sara
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- Hide quoted text — Show quoted text ->Subject: Just checking in >From: "inventing" stracmanREM…@email.msn.com >Em is my daughter. TS/OCD/ADHD/LD, dx at 10. depression, fights at school, >failing grades, no friends, rages and ongoing amazing anger, a teacher who >was from Mars as far as working with a TS child. She is now 20, a sophomore >at college. She goes to school full time, works 15-20 hours per week at the >college food service. >Grades are up and staying up. Promotions at work. Maintaining friends and >gaining more! Has taken up dance. (Has a standing backstage invitation >from the Ballet Trocadero do Monte Carlo. The guys love her!) Local >modeling work is ongoing. Has finally gotten a handle on her >rages/anger/whatever. Told me she just made new decisions about what was >going to get her angry. Think there was a lot of maturing in the mix also. >Is making responsible decisions about her medications. Right now is working >with neuro to slowly decrease some of the meds. Sad to say the vitamin >regimen never helped the TS, but she is soooo healthy! Survived roommates’ >flu, mono, and other ills without a sniffle! Has finally decided that she >is smart afterall! We always knew it, but once the TS hit, she never >believed it. Thanks partly to the aforementioned teacher from Mars. She >has actually started to study for her classes. I once pointed out to her >that to make it into college after never studying in high school, she had to >have been just a little bit "smart", but she never believed me. >She still has her tics, many of them loud. Some of them painful to those >around her (the socks and pinches). She has always been wonderfully >straight forward about her TS, and an advocate for herself and others. But >her attitude has gotten even more accepting towards herself Which I believe >has lessened her internal stress levels. And her better management of her >anger has also lessened her internal stress levels. Her tics have calmed >somewhat. Perhaps it is also her age. And perhaps she will be like her >father and her tics will go into remission soon. She still has all her >learning disabilities, but finds ways to work around them with the help of >her 504 plan and the university Disability Services office. (Bless those >people!) Uses her OCD to her advantage, wanting to become a convention and >special events planner! >Life is calming down here, youngest daughter almost through her Senior year >of High School. I will probably start lurking instead of just stopping by. >Adding my two cents now and then if I feel like I can help. We’ve been >through so much, and so many of you have helped. Would like to return the >favor. >still inventing (guess it never ends..) >KC
Thanks KC for your *once again* timely post! I’m about 10 years behind you… and somedays one just needs to know there IS a light even though you are not near the end of the tunnel. We have now entered the stage of inconsistent grades, (which I could care less about… but it does tend to cause one to lose self-esteem… and it of course throws teachers for a loop… no matter how many times you explain it… if we could only have a dollar for every time my son has heard… "there now… *see*… you really can do better when you just try harder" arghhh..), flash tempers, and a tendency, (tic, compulsion… whatever), to annoy those you love most by aggrevating them. Now, our *manifestations* of TS are mild appearing on the outside… but it is the the stuff on the inside that can be a bit much to deal with at times… the "feeling bad" about oneself, when you are out of control with grades, or with instigating things… or with your weight… that’s the stuff that can really be a downer. Tonight we had a bit of a face to face with this unkind reality of it all… I can ignore the tics, I can ignore the grades, I can even ignore some of the needling sibling behaviors… but it’s when *they* can’t ignore it… or more accurately when they can’t ignore how it makes them feel as a result… that’s the stuff that really throws me for a loop. Do you chin up, tomorrow will be a better day? Do you start therapy? Is your *soothing a crying child* really helping when that child already knows their parent loves them… but it’s *themself* they don’t love so much all the time?. Do you put it into perspective and say many kids have doubting days? Ahh… the *what DO you do’s* can really swim in ones head at times. Thanks for your post KC, it’s one more *hang on* that I need at this moment. M
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On 28 Feb 2002 15:23:43 GMT, kartr…@aol.comblah (Kartreit) wrote: >>Subject: Just checking in >>From: "inventing" stracmanREM…@email.msn.com >>Just a quick update on Em because over the years so many of you have cared >>and been a great help.. >Wow! I’m going to copy and paste this for my daughter, age 14, who is currently >not in school. I think it will be inspiring to her.
I hope you see what i wrote.
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It sounds like you’ve spend a lot of quality time with her. I bow down to your own humbleness. On Thu, 28 Feb 2002 10:10:29 -0800, "inventing" – Hide quoted text — Show quoted text -<stracmanREM…@email.msn.com> wrote: >"JNB" <j…@cyberbeach.net> wrote in message >news:u7slhtikl5hh18@corp.supernews.com… >> Hi inventing… I certainly do remember you. >> Thank you so much for that great update. It really helps especially for us >> parents in the younger less controlled stages of anger with our children. >My >> son is 10 and full of anger. And he too hates himself and his disorders. >some things that helped my daughter help herself: >1) At each age she took as much control as she could of her life, which was >always a little more than we realized she was capable of. She attended the >meetings with her teachers at the beginning of each new term starting in >middle school. By her Jr. year in high school, she was running the >meetings, not the adults. >2) She learned about her TS, learned the lingo and terminology. >3) She took every opportunity offered to her to talk to others about TS. At >13 she was talking to and answering questions from university students. In >5th grade, for a class assignment in computers, she developed a simple >educational program on TS, which the school installed on all classroom >computers. In middle school as an introduction to her campaign speech for >class secretary she talked about her TS. She told us she decided it was >sink or swim time. Not talking about TS wasn’t going to make life easier, >or make the tics go away. >Getting so many kids eduated about TS at her schools did not guarantee her >friends. She only had a couple of friends all the way through school. But, >it was also surprising how many kids would stand up for her against an >uneducated adult or another student who teased. They may not have always >felt comfortable around her, but they knew it wasn’t something she could >control. >4) She found activities outside school that she was good at. This gave her >friends and kuddos even when the school days were going badly. I admit, we >were not always enthusiastic about her choices (modeling?? managing a >football team?? ) but we were wrong and she was right. She found places >where she was accepted for her talents and accomplishments. Great refuge >when the teasing at school got rough. When the grades were in the basement. >5) Humor Humor Humor. Great way to deal with the bullies. For example, >when someone finished a rude comment, she would SMILE and pleasantly asked >them if they felt better now that they’d gotten that off their chest? Not a >hint of sarcasm. Usually disarmed the bully. Sometimes she’d AGREE with >them that TS was very strange and she was sooo glad they didn’t have it. And >smile. And sometimes she just ignored them, didn’t stay long enough to hear >the insult. >6) She volunteered for jobs in the schools, and in high school was employed >in the attendance office. This gave the adults a chance to be impressed >with her talents. They did not identify her with her TS first, but her >talents and abilities first. This gave her a wider base of support at the >school, and fewer people who believed the stories about her "weirdness". >7) The anger thing is tough. I think it is much more tied to the ADHD or >the OCD than the TS. She is learning to express her anger verbally rather >than physically. But more importantly, she has redefined for herself the >"list" of things that make her angry. She realized she was either angry or >not, with no level of emotions in-between. She didn’t understand >"irritated", "perturbed", "bothered", or any other level below anger. Now >she does. >Tell you kids to hang in there. It may all seem insurmountable, but it IS >worth it. >Still inventing >KC
Response:
"inventing" <stracmanREM…@email.msn.com> wrote in message > "Benita Winslow" <Ben…@prodigy.net> wrote in message <snip> > > Good job, Em and Mom!!!! > > Hugs, > > Benita
<snip> > Anyway, thank you for the kind words. I still have a lot of guilt over the > early years and they can be difficult to hear. > still inventing, > KC
Great to read your messages, KC. Just catching up here. I appreciate your honesty very much. It sure does help. I echo what Benita said… Good job, Em and Mum!!! Lara.
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- Hide quoted text — Show quoted text ->We have now entered the stage of inconsistent grades, (which I could care >less >about… but it does tend to cause one to lose self-esteem… and it of >course >throws teachers for a loop… no matter how many times you explain it… if >we >could only have a dollar for every time my son has heard… "there now… >*see*… you really can do better when you just try harder" arghhh..), flash >tempers, and a tendency, (tic, compulsion… whatever), to annoy those you >love >most by aggrevating them. >Now, our *manifestations* of TS are mild appearing on the outside… but it >is >the the stuff on the inside that can be a bit much to deal with at times… >the >"feeling bad" about oneself, when you are out of control with grades, or with >instigating things… or with your weight… that’s the stuff that can really >be a downer. >Tonight we had a bit of a face to face with this unkind reality of it all… >I >can ignore the tics, I can ignore the grades, I can even ignore some of the >needling sibling behaviors… but it’s when *they* can’t ignore it… or more >accurately when they can’t ignore how it makes them feel as a result… >that’s >the stuff that really throws me for a loop. Do you chin up, tomorrow will be >a >better day? Do you start therapy? Is your *soothing a crying child* really >helping when that child already knows their parent loves them… but it’s >*themself* they don’t love so much all the time?. Do you put it into >perspective and say many kids have doubting days? Ahh… the *what DO you >do’s* can really swim in ones head at times. >Thanks for your post KC, it’s one more *hang on* that I need at this moment. >M
Marietta, The above describes our situation to a "T." Our son is just starting to have some problems with school work, and everything else you mentioned. He has no siblings, but has been having terrible problems with my ex’s girlfriend’s children. To the point that I don’t understand why they keep getting the kids together – it never turns out well. But your post made me see that it can happen with siblings too, so maybe I need to take a different attitude. Anyway, this is mostly a "me too" post. If you come up with any sibling solutions, I’d love to hear them, maybe we can transfer them to my son’s not-yet-step-siblings. Sara
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‘Twas Thu, 28 Feb 2002 14:10:38 -0800 when all alt.support.tourette stood in awe as "inventing" <stracmanREM…@email.msn.com> uttered: >Even after >we had the dx, even after I’d read so much and learned so much, I seemed to >have less patience than anyone else with her tics. Sometimes the noise in >the confined space of the car gave me such headaches that all I could do was >pull over and cry. Then she would be apologizing to me (I hate to even >write this stuff down) and tell me she would try harder to stop the tics! >But my daughter did not give up on me!
What a great girl. Welcome back, KC. — RB |
