Why I Do What I Do
Question:
Hea, that was from a song in Fiddler on the Roof ! This person gave me permission to post this to my website without names, but until I get some software that will accommodate variable length pages, I can’t add something this long to it. So, I’m posting it here in the meantime. It’s an eloquent look at the "reeling from a diagnosis" phase and how it can feel for some to be in those shoes … QUOTE: I just want to thank you for such a great webpage. Many months ago (actually a year ago) you e-mailed me during probably the lowest time of my life. At a time when I could barely go to sleep at night without crying and would have to keep my emotions in check when I looked at my beautiful "ticcing" 5 yo daughter, you gave me much needed information and led me in a good direction. I have come a long way since that time. I AM sleeping and my daughter has never been more beautiful (ticcing or not) then she is today. My daughter went through an odd time about this time last year (pretty complex tics), but as quickly as they started, they ended. I spent too much time waiting and waiting for the next episode only to drive myself deeper into my own depression. Then, one day, I realized months had gone by and nothing was happening. Oh, we have the occasional eye blinks and throat clearing, but the "terrible" episode I was so sure was going to come back, never did. WOW! I was a regular visitor to the AST board and read the MGH Website daily for quite some time. Then, I realized that none of the posts related to me. My daughter was mild to say the least. After the initial "bad times" I sometimes question if she has it or not. I now make the assumption she probably does, albeit be extremely mild. I also realized that many, if not most, of the people who post to TS websites and chat groups are part of the minority – the severe cases of TS. I was so overwhelmed by the outlook I was being painted. I believe it was the reading of these post that added to my own despair. One day….I just stopped. No more reading. It was the best thing I ever did for me and my daughter. I decided to not worry about tomorrow anymore. I decided that I was not going to let someone else’s story allow me to miss great moments with my daughter (I spent so much time waiting for new tics, I actually believe I was missing all the great things my daughter had to offer). I just stopped worrying about it. Now, I rarely think about it. The reality of the situation is….I am a better parent because of this experience. My children and I could not be any more close because of this experience. I spent so much time trying to help mu daughter understand what was going on that she and I are forever bonded. This has trickled over to my son as well! It seems odd, but I really believe that going through this has slowed me down…giving me time to smell the roses and appreciate all the small things our children bring to our lives. This brings me to your website. Today I decided to go onto AST to see if any of the "newbies" I started off with were still posting. This is when I came across your website link. I was so amazed at how accurately you have come to understand TS. I have to tell you….I cried. I wish I had had your website when my daughter was first diagnosed. I would have breathed much deeper and known that "mild" was the norm and all the other symptoms mu daughter never showed were not necessarily going to be part of her spectrum. It took me a long time to realize that you only hear about the severe cases. Most of us with mild cases do not seek out support groups or create our own websites. We are too busy living life. I thank God, that you were not TOO busy living life, because you have given to the TS community a much needed look at TS. The average persons experience with TS and what and how to interpret all that information they are about to get. Thank you for taking the time to share you thoughts and experiences. I am so glad that your sons are doing so well and you are truly "Blessedby2." I just wanted to let you know how your website affected me when I read it. I hope that every new person dealing with TS for the first time will be directed in the "Now What…So What" direction. Thank you again. ENDQUOTE BlessedBy2 See my Website, Tourette Syndrome – Now What ? http://members.home.net/blessedby2
Response:
BB2: What a beautiful quote. Gary
Response:
lpacker wrote: > BTW, Publisher has an option to use a longer page length. You should > be able to get this letter all on one web page. If you need help, > call me, and I’ll step you through it on the phone. Until you get > real software, that is <g>.
Thanks Leslie. Yes, I know how to make a longer page on Publisher, but what I don’t know how to do is separately upload pages of different lengths with different names to the web server. So, I can only upload one document with one page length for the whole document. Has me stuck 
) What I really need is for some pages to be longer than others, which I can’t do on one Publisher document. I’d call you for help, but it’s not worth trying to figure out for the time being, because I was pushing the limits on my time this summer anyway when I did the website. I have never had such a busy summer! In the fall, after the boys are settled in school, I’ll get some real software and convert and re-do the whole thing … I think you recommended Claris or Front Page? Then I can add on all the things I left out as I just attempted to get something up in Publisher … I also haven’t figured out how to add in a counter, but just don’t have time to tackle this again until the Fall. So much to do still, and summer is almost over 
BB2
Response:
Coming back to this now that we’ve done the horse thing for the day and the boys are settled in for the evening with friends: lpacker wrote: > What you’re doing is similar to what I’ve >tried to do in my "letter to parents" on my site — which is to let >them know that: >1. a ‘diagnosis’ is not a death sentence. >2. their child is still a child. >3. not all cases are like what you hear about on the ‘net.
Since I’ve lived the struggle of trying to get these three points to go the distance from my head to my heart, it became my passion to address these issues for newcomers. Because of a few people who REALLY had to persevere to get me to REALLY accept those three points, I eventually made it. Meeting those people in real life helped a lot. No matter how many times and ways we repeat this information, parents of newly-diagnosed children can be SO frightened by the stigma that is so unnecessarily attached to TS that this information is almost impossible for some to absorb. So they NEED to have specific examples, case stories of those who do well, in one place where it’s not tempered with a "but" clause. Often, the "but …" becomes all the parent sees. [Aside: As you know, I worry that the same is true for teachers -- they read one positive line, but then see 15 lines of "but..." and only focus on the "but ..."] We tell people that not all cases are like what they hear about on the ‘net, but then we give them very little or nothing to fill the void – counterexamples are just not out there. And, they may be left wondering just what sort of people we are if we really think TS is "no big deal." They may imagine us as so dysfunctional that we just *think* TS is no big deal! I hope this site will fill the void … in a responsible way And I hope others like it will eventually compete and drive mine right into oblivion! The woman who wrote this letter is no longer part of any sort of TS support group — online or in real life. It is a shame that she should be cut off from information that she may need as her child goes through the waxing and waning that may occur as she matures. And it’s a shame to lose the resources of mothers like this one. It has always been my belief that some support group leaders really haven’t walked in shoes like this woman’s (or mine) and, even though they want to, just don’t yet know quite *how* to adjust their responses so as to accommodate all on the spectrum. It is my hope that they will learn so that woman like this one will remain involved and contribute to the strength that comes from numbers. >4. don’t believe everything you read, and
…but we had to teach them how and why not to believe everything. How to interpret statistical work. So that they can read statements that are technically accurate and still know how to find "themselves" in those statements. In that way, we don’t have to leave out either end of the spectrum. >5. don’t throw good parenting out the window just because your child >has a ‘diagnosis.’
Ah, this is such a tough one. I could only touch upon it, because I just don’t have the right language to express what I intuitively know in this area. How I would love for someone else to take off with Point # 5. Well, dinner calls !! Take care, BlessedBy2 See my Website, Tourette Syndrome – Now What ? http://members.home.net/blessedby2
Response:
lpacker wrote: >Adding a counter really is easy… but I remember how confusing I >found it at the time when I was in Publisher.
YOU started in Publisher too ? Oh my, I’ve got a long road to travel still ) >BTW, I just updated my own site.. and added a lot of links — >including the personal homepages (yours included),
Thanks ! (Cool !) I’ve been listing it with search engines for two weeks with no luck. Guess I’m doing something wrong, ‘cuz it won’t show up. with the mandatory >disclaimers…… >And after the summer *I’ve* had, you can be sure that there are now a >lot of links on bipolar, with more to come, for those who *do* need >the info.
I’ll look for them … some of the bipolar info on the web seems excellent, and has helped lots of folks I’ve met ! Yep, my summer wasn’t actually all that bad, was it ) BlessedBy2 See my Website, Tourette Syndrome – Now What ? http://members.home.net/blessedby2
Response:
lpacker wrote: >>BTW, I just updated my own site.. and added a lot of links — >>including the personal homepages (yours included),
I just had a look … cool ! Thanks for thinking of those "reeling" parents and putting "us" in such a prominent position It is very very much appreciated. Really I think more of the "bases" are covered now ! BTW, you have a small typo after Don Donin (the latter is first getting started – you probably meant "just" getting started.) Also, on another page, you might consider Camilla’s website for SJW — it’s more up to date than the hypericum home page (I think anyway – I’ve really slacked off on following SJW lately): http://www.primenet.com/~camilla/STJOHNS.FAQ Back to my OTHER Publisher project, which is not nearly as much fun … BlessedBy2 See my Website, Tourette Syndrome – Now What ? http://members.home.net/blessedby2
Response:
lpacker wrote: >Did you see/hear my silliness on the site credits page? I womanfully >resisted the urge to put midi files on the site, but just HAD TO <g> >on that page…. so you’ll hear the kind of upbeat stuff I like to >listen to when my eyes are bleary
Yea, I liked it !!! BlessedBy2 See my Website, Tourette Syndrome – Now What ? http://members.home.net/blessedby2
Response:
lpacker wrote: > blessed…@aol.com (BlessedBy2) wrote: > >Yep, my summer wasn’t actually all that bad, was it ) > Nope. Not when you think about all the things that might have > been….
Your daughter, Kathryn’s Al, a tragedy in my extended family at the beginning of summer. I shouldn’t complain about being too busy doing the things I love to do. BB2
Response:
>lpacker wrote: >It can take a while to show up, and some engines are based on the >number of sites that link to yours. My site doesn’t show up in a lot >of search engines, either (although I think Alta Vista indexed a lot >of my pages by spidering).
i use software called "site promoter." cost is about $99. mary
