Need your opinion
radsafe
(YEAH!), a tech. support position for an in-bound computer suport
company. In the disabilities section of the company policies it
strongly urges people who have a "hidden disability" to declare their
disability to HR for their (your) file. Obviously they will get credit
for having a "disabled" on their employee roster, but is this a good
move for somebody with TS or not? Obviously (they say) you would be
"protected" (whatever that means) from harassment/ discrimination due
to your condition, but is it a good idea? What have others out there
on this board experienced from disclosing/ withholding this
information?
I am being a little cynical here or (at least trying to be neutral) so
I appreciate any advice you all might have.
Dave
Mitchell Small
to bring me out.
In addition to your question, which is a good one, you might consider your
motivation for declaring yourself. You could have quite a lot to gain with
very little to loose. I've got a little experience with schools and our son,
and I believe the relationship between work and school will be similar. Once
you have let your employer know, you can, if required, ask for and receive
"reasonable accommodations". In our son's case, this means a little more
leniency in his vocalizations and the use of manipulative (soft rubber
eraser) for his hand twitches. At work, it might mean being allowed a
slightly different work pattern: more walking breaks, stress balls, etc. If
you don't let your employer know, despite an otherwise good work
performance, you may be counseled for behavior that doesn't fit the
expected. Again, I am using the school experience by way of analogy. Once
his teachers knew his behavior was really beyond his control, they were more
accepting of his behavior.
This does not mean he was totally excused from behavior rules. We are
working on controlling the tics,etc and are making headway. The same should
be true at work. You should still be productive, but if your HR department
is aware, special needs can be put into perspective. Be aware, however, you
may need to provide a lot of documentation and may even need to undergo
additional test / observation, etc. I don't know if the workplace has the
equivalent of a "504 meeting" but that is what we had to go through at
school. (Ironically, it was the process of the observation of our son for
ADD that lead to his diagnosis with Tourette's. If not for the process we'd
still be trying to control the symptoms the wrong way.)
This is just my opinion. Please feel free to consult other sources and make
the choices you feel are best for you.
"radsafe" <Sandm...@uswest.net> wrote in message
news:klhktskocdo980aog...@4ax.com...
KATHRYN A TAUBERT
In the disabilities section of the company policies it
strongly urges people who have a "hidden disability" to declare their
disability to HR for their (your) file. Obviously they will get credit
for having a "disabled" on their employee roster, but is this a good
move for somebody with TS or not?
I am being a little cynical here or (at least trying to be neutral) so
I appreciate any advice you all might have.
Dave
Dave, this makes me a little nervous. I"m not sure exactly why, perhaps it's
because I am also a 'little cynical.'
But to try to answer your question specifically, here goes:
First, I think you have to answer the question, What's in it for YOU to do
this?
Also, do YOU think you have a 'hidden disability?' How severe is your
presentation of TS?
What are your symptoms like and what specific accommodations would you
benefit from by declaring yourself?
What is the WORST case scenario in this regard?
To that latter: have you ever 'declared yourself' before? Is TS mentioned in
any of your medical records anywhere, and have you ever received insurance
compensation for treatment related to TS?
If you have, then you are already in the medical 'system' as having been
DXed with TS, and further admission of your condition isn't quite as
'risky', from an insurance standpoint, as it would be otherwise.
As long as you continued to be employed by companies with group insurance
that does NOT exclude TS from coverage, you are ok.
But the moment you leave that job, find yourself working either for a very
small company with group insurance that may EXclude TS coverage and/or need
to obtain individual health insurance, you might be in trouble here, with
declared, documented, DXed TS.
I"m not suggesting that 'we' hide our DX as a means of avoiding insurance
problems without trying to 'fix' the insurance problems. I AM,however, being
realistic about what you might PRESENTLY expect regarding this matter once
you are 'on record' as having TS.
Also, I would have a great many questions about accessibility to those
records in HR. For example, if HR has this information, and you are up for a
promotion in another dept., will this information be shared with your
prospective employer prior to your interview? What assurances will you have
that this will NOT be done? How will you know that for certain?
Personally, until and unless there is something 'disabiling' about your
particular presentation of TS that requires you to have some sort of special
accommodations in the work place that you cannot achieve on your own, I
would hesitate to 'declare' myself to your HR dept. without some very clear
cut BENEFITS to you in doing so.
From what you have said here, I don't see any. It seems to me, unless you
have real needs, that your company will benefit more than YOU will.
KAT in CT
Dw
Be careful,
This wasn't TS but my brother was a machinist for a
local company, and they passed out a memo like that.
he told them he was on prozac for depression. Two
weeks later he was laid off.
Your company might want to get "credit" for hiring the
disabled, or they might want to clean house of people
who might go postal. This is the post columbine era,
so be paranoid about all the paranoids around you.
Words that might scare management could include prozac,
neurological etc.
dw
radsafe wrote:
>
> I have a question to all you TS'ers. I recently started a new job
> (YEAH!), a tech. support position for an in-bound computer suport
> company. In the disabilities section of the company policies it
TSNowWhat?
urge you to also consider the STILL significant amount of damaging
misinformation about Tourette syndrome, which can be found online, in
print, and in the media. According to what OTHERS may find on the
internet and in print, you are perhaps just a dangerous, criminal,
deviant, unstable person with sexually inappropriate behaviors ... and
the list goes on ... This is a very real problem for all of us, but has
particular significance in the hands of an employer.
I'm gearing up for another onslaught of letters to webmasters and
authors on the internet as soon as I find some extra time, and some help
from everyone in re-inforcing those letters with MORE letters to the
webmasters may help us all to present more accurate information about
TS, so that we someday may not need to fear the impact of this misinfo
upon employers and/or insurance companies. There's only so much I can
do before my boys are old enough to be employed, and tackling the
misinfo that is "out there" is probably only something that *we* can do
... as I doubt that we'll ever get a concentrated effort in this realm
from the TSA. I suggest that you go to several different search
engines, pretend that you are a complete neophyte to information about
TS, put yourself in your employer's shoes, and have a look at what you
are likely to find on the 'net ... will you find yourself accurately
portrayed by what your employer is likely to encounter about TS on the
'net ??? (The only good news, thank goodness, is that many of the awful
books out there aren't in too many libraries ... perhaps we can all work
to get our local libraries to carry simple, inexpensive, up to date
books like Robertson's "The Facts about Tourette Syndrome?")
KATHRYN A TAUBERT wrote:
>
> In the disabilities section of the company policies it
> strongly urges people who have a "hidden disability" to declare their
--
Tourette Syndrome - Now What?
http://members.home.net/tourettenowwhat
"The autumn always gets me badly, as it breaks into colours.
I want to go south, where there is no autumn,
where the cold doesn't crouch over one like a snow-leopard waiting to
pounce."
D.H. Lawrence, English author (1885-1930).
radsafe
benefit I see (and actually the only one I WANT) is protection or some
safeguard from harassment.
You are very noticeable, KAT, my TS isn't that bad at all. In fact,
more than person has been surprised when they find out I have it.
However, I have a couple minor tics that are noticeable, especially to
people that I'm around. A head shake (to "fix" my hair) and a little
cough when I talk. The cough particularly can (could) be annoying to
someone that I'm on the phone with (it's a phone tech-support
position). I'm not looking for any benefits or "help" at all and
refuse to use this for a crutch BUT people are people and that goes
without saying. I don't need any harassment from co-workers).
At my old job in Vegas a few people knew I had TS and it was no
biggie- but it was un-documented. I was receiving medical treatment
and insurance benefits from it (i.e. pills, dr. visits, etc.) but it
wasn't on any of my official records. Since moving to Utah and going
off all meds. here I haven't had any problems than when I was in Vegas
with meds.
So there you are. I don't know if it's to my advantage or not, but all
things considered, I guess it really isn't.
Incidently, before I went off my meds. I was getting sick nearly once
a month with something or another. I missed a lot of work due to all
my colds and illnesses. For 4 months now I've been med. free and NOT
ONE thing has afflicted me. Go figure. WHOO HOO!!!!!
Dave
Randall Bart
TSNowWhat? <tourett...@home.com> enlightened alt.support.tourette
with these thought provoking words:
>I'm gearing up for another onslaught of letters to webmasters and
>authors on the internet as soon as I find some extra time,
Blessed, you will never find extra time. You can look all you want,
but there are only 24 hours in a day. Okay, just for you, I will
arrange for you to get an extra hour on October 29, but you have to
give it back next April.
--
RB |\ © Randall Bart
aa |/ Bart...@usa.spam.net Bart...@att.spam.net
nr |\ Please reply without spam 1-818-985-3259
dt ||\ War Dead: http://apll.freeyellow.com/drug_war_list.html
a |/ DOT-HS-808-065 MSMSMSMSMSMSMS=6/28/107 I LOVE YOU
l |\ Unisys A Series Wiz For Hire:
l |/ http://users.aol.com/PanicYr00/RBResume.html
TSNowWhat?
I've always known you were very generous and had a heart of gold!
Now, can you arrange for me to find about TWENTY hours to do the job I
have in mind ... ??? LOL ...
P.S. - please refer to the quote in my sig line when cruelly reminding
me that the daylight hours will soon be reduced ... I am so busy
enjoying the glorious last few days of warmth ...
Randall Bart wrote:
>
> Blessed, you will never find extra time. You can look all you want,
> but there are only 24 hours in a day. Okay, just for you, I will
> arrange for you to get an extra hour on October 29, but you have to
> give it back next April.
>
> --
> RB |\ © Randall Bart
> aa |/ Bart...@usa.spam.net Bart...@att.spam.net
> nr |\ Please reply without spam 1-818-985-3259
> dt ||\ War Dead: http://apll.freeyellow.com/drug_war_list.html
> a |/ DOT-HS-808-065 MSMSMSMSMSMSMS=6/28/107 I LOVE YOU
> l |\ Unisys A Series Wiz For Hire:
> l |/ http://users.aol.com/PanicYr00/RBResume.html
--
KATHRYN A TAUBERT
So there you are. I don't know if it's to my advantage or not, but all
things considered, I guess it really isn't.
Doesn't sound like it. And it's something you can ALWAYS do in the future if
you wish. But once it's done, it can't be 'undone.'
Incidently, before I went off my meds. I was getting sick nearly once
a month with something or another. I missed a lot of work due to all
my colds and illnesses. For 4 months now I've been med. free and NOT
ONE thing has afflicted me. Go figure. WHOO HOO!!!!!
Dave, medications can deplete the body of various nutrients. This is
possibly what was happening in your case....
KAT in CT
Randall Bart
radsafe <Sandm...@uswest.net> enlightened alt.support.tourette with
these thought provoking words:
>What have others out there
>on this board experienced from disclosing/ withholding this
>information?
I agree with what KAT says. It's up to you to assess your own
situation, but there are definite hazards of disclosing your
condition, especially to those who say they want to help you.
There are some advantages to having it on the record. If you get into
"situation" with a co-worker, having the condition declared beforehand
can strengthen your position. OTOH, it could also undermine you ("He
says the other guy started it, but he has Tourette Syndrome, so it
must be his fault").
So I say tell personnel _only_ if it is likely that Tourette Syndrome
will cause a situation where you will want to point to this
declaration. It might be better to tell your immediate co-workers,
but not tell personnel. Your call.
Kendall P. Bullen
<Sandm...@uswest.net> wrote:
> Thanks for all of your comments and I welcome any more. The only
> benefit I see (and actually the only one I WANT) is protection or some
> safeguard from harassment.
Uh, if you don't tell them, they still should safeguard you and everyone
else from harassment for any reason. If you get harassed, then you can
explain TS and then say 'stop harassing me' and go to HR if that doesn't
work -- I don't see the point of telling HR up front. Unless they make
some announcement for you (would you want this?), then them knowing has
nothing to do with whether or not you get harassed, and doesn't somehow
magically make them able to protect you -- and you not telling them
doesn't absolve them of any responsibility to protect you from
harassment!
I have to wonder at their agenda. Not that it's necessarily sinister,
but I wonder what the real reason is. If they really think that they
can only safeguard you if they know beforehand (do they read people's
minds and stop harassment before it starts? no...), then they don't
sound like they know their jobs very well. ;-/
> refuse to use this for a crutch BUT people are people and that goes
> without saying. I don't need any harassment from co-workers).
Right! But HR knowing about it -- how does that stop potential
harassment? It seems that the only thing that would stop it before it
starts is to tell your co-workers (as well as HR, I suppose, so they
don't harass you either ;-). IMNSHO.
> So there you are. I don't know if it's to my advantage or not, but all
> things considered, I guess it really isn't.
That's my take on it. I will admit, I'm blessed by working with a great
set of diverse people who have never commented on things I do.
Grins 'n good luck,
Kendall
--
Kendall P. Bullen Web: http://www.his.com/~kendall/
E-mail: kendall@-->^^^^^^^
I hate spam & UCE. Please fix my address if you must e-mail me.
But please, NEVER send me COPIES of Usenet postings.
Join Gaylaxicon 2000! Go to http://www.lambdasf.org/g2k
Kendall P. Bullen
TAUBERT" <KATA...@prodigy.net> wrote:
> Doesn't sound like it. And it's something you can ALWAYS do in the future
> if you wish. But once it's done, it can't be 'undone.'
RIGHT ON, KAT! :-) Excellent point!
Richard kryszak
several years, when he added some vocal tics to his multiple motor tics.
For us, the diagnosis was hard to take. Now there was NO doubt in our minds
what are son had. And we only had to pay $150.00 to get it! What a
bargain! ;-)
We fired the doctor that diagnosed him (ped. neuro.) and hired a new
doctor yesterday (ped. psychiatrist), thanks to Mrs. Valencia on the TSA
board. Thanks Jeanne! I have a question for all of you with children with
TS. Have any of you had your child on Tenex and how did they do? My son
has a moderate case, with comorbid ADHD. We had a baseline EKG this morning
and blood work to rule out PANDAS and strep. I'm a littlle worried about
starting meds with him. Any insight would be appreciated.
Maria
Its the coffee talking
moderate case of TS? Is his ticcing causing severe disruptions? And I'm sorry
I can't add any insight to Tenex, my son has never been on meds, though his TS
has been mild to moderate to severe at times, (it's moderate/mild right now).
I'm sure others here can answer your tenex question. I can only offer insights
in how we've learned to live with the tics, (which is primarily that it takes
time, but they are a lot less of our focus than they were 5 years ago!).
Marietta
Marietta
<a href=http://www.thecoffeechronicles.com>The Coffee Chronicles</a> Living
with Tourettes - a different perspective.<br><a
href=http://www.thecoffeechronicles.com/tccbe/default.htm>TCC - Book
Exchange</a>
KATHRYN A TAUBERT
I'm a littlle worried about
> starting meds with him. Any insight would be appreciated.
>
> Maria
>
> \
Hi Maria, glad you found us. I have moderately severe TS, and I do not take
medications. I'm 54 years old, and when I was a child, there was no
diagnosis. I didn't find out what I had till I was 38! By then, I had
learned very well to live with the tics, and the medications' side effects
were worse than the TS!
I echo Marietta's question about medications. What specifically is there
about your son's symptoms that makes you consider medication? There are
tradeoffs, sometimes the side effects aren't particularly pleasant, although
some people do well on them. Generally speaking, meds only 'work' for about
50% of people with TS, and then they do not typically eliminate the tics.
They may reduce them.
The general opinion of many of us is that medications should be reserved
only for those cases in which the symptoms are severe enough to influence
the child's social development and/or school work. And since tics typically
'wax and wane,' it's often very hard to tell just when the medications work
and when the natural 'waning' process takes over.
Since there isn't much known about the long term affects of some medications
on children, it may be wiser to restrict the use of medications for mild to
moderate cases until and unless there is evidence that your son is suffering
in ways that cannot be addressed by other means. For example, talking with
his teachers and schoolmates about his condition, if he is experiencing
difficulties with teasing in school.
I hope that you will consider answering some specific questions for us here,
since I gather that you are questioning the use of medications yourself, and
truly want some discussion about it. With the answers to the following
questions, we may be able to help you further.
1). What specific symptoms does your son have?
2.) How does he feel about them?
3.) Which ones bother him the most and why?
4.) Which ones bother you and his father, siblings, the most and why?
5.) Is he having any trouble in school and specifically what kind?
6.) Is he having any trouble making friends and why?
7.) What is there about medication for TS that bothers you and why?
8.) Has he asked you for relief, and specifically what kind of relief is he
seeking?
Good luck, Maria. And tell my BOD colleague Jeanne I said hello.
KAT in CT
(member, TSA national Board of Directors)
TSNowWhat?
> KAT in CT
> (member, TSA national Board of Directors)
Fortunately, for us !!
Someone who has TS and represents ALL of us with great dedication,
concern, knowledge and a huge heart.
Blurt Durtwurd
TSNowWhat? wrote:
>
> KATHRYN A TAUBERT wrote:
>
> > KAT in CT
> > (member, TSA national Board of Directors)
>
> Fortunately, for us !!
> Someone who has TS and represents ALL of us with great dedication,
> concern, knowledge and a huge heart.
Yes!!!! We love Kat!!!!
Blurt
KATHRYN A TAUBERT
TSNowWhat? <tourett...@home.com> wrote in message
news:39F21486...@home.com...
> KATHRYN A TAUBERT wrote:
>
> > KAT in CT
> > (member, TSA national Board of Directors)
>
> Fortunately, for us !!
> Someone who has TS and represents ALL of us with great dedication,
> concern, knowledge and a huge heart.
>
Wow. I'm humbled , TSNW. Thank you.
KAT in CT
KATHRYN A TAUBERT
>
> Yes!!!! We love Kat!!!!
>
> Blurt
And I luv u guys. A day without AST just isn't 'normal.'
So to speak..
"-))
KAT in CT
FANGBASHER
similar feelings before our daughter started which was 17 mos. after tics
began. It was just about the hardest decision we ever made. She did not start
medication until tics reached point where they did significantly interfere with
her daily performance--had become almost on-going--both simple and complex
motor and vocal to a moderate to severe degree. She began isolating herself
from peers to engage in tic behaviors because the need to do so had become so
strong.
Within 10 days or so after starting medication (Pamelor/and later its generic
form--nortriptyline) the tics and related OC behaviors were significantly
reduced if not eliminated. It also helped with impulsivity, restless sleep
patterns, and she stopped making careless errors on her math papers. She took
a relatively low dose of this medication at bedtime only over a 5-year period
with minimal, if any side effects. We feel that it gave her back her
childhood.
She is now in high school where she is doing exceptionally well. She is an
honors student, does well in the many extra-curricular activities she is
involved in (almost too many), has many friends, ia a student leader, and most
importantly says that she "loves her life." She is fortunate that the
medication did work so well for her without side effects. Her physician says
he has had much success with it--works for about 75% of those who use it for
tic control and in those cases for whom it does work--he feels it works the
best of all the medications with least side effects.
She has been off medication now for about 2+ years and although she continues
to have one mild tic that is regular it is not something that would be noticed
by most (and she does mask it to some degree). We also have seen other
occasional tics and OC-related mannerisms but not something that would be
noticed or picked up as such by most other than those who knew her very well,
and they do not appear to have any negative impact at this time. Should she
again feel need for medication, she knows it's there.
Even though there may be more awareness and acceptance of TS than there was at
the time we started her on medication, knowing how well it helped her without
negative side effects, I would not hesitate to do it again if she were showing
the level of symptomatology she had at the time. She had gone from being a
student leader to isolating herself to engage in tic behaviors. She was no
longer participating in her environment during a critical time for development
of social skills. She had not yet experienced peer rejection or teasing,
although other students seemed puzzled by what she was doing and began hanging
around her less at the time. It was frightening for us parents to see this
change.
Although the idea of medication was scarey, we felt that some intervention was
needed at the time. Again, she was quite fortunate that the medication did
work for her as well as it did. We had also been concerned that it might
negatively impact her personality or affect her alertness. Much to our
pleasant surprise, it did neither. Rather it restored her personality and
disposition prior to onset of severe tics. Because we treated it at the time
we did (start of 3rd grade) she never had to deal with any negative social
repercussions.