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Winter 2007
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Vol 1, Issue
2
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Bonne Nouvelle
Your "Good
News" from TSA of Texas
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TSA of
TX:
Helping Children and Changing Lives
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Tourette Syndrome
is a neurobehavioral (brain-based) movement disorder characterized by
motor and vocal tics. Beginning in childhood, it causes those
affected to make movements and noises they cannot control.
Additionally, many are plagued by OCD, ADHD, oppositional behavior
and other disorders. Although medication may help control the
symptoms, as of yet there is no cure. TSA of Texas, one of the
largest chapters in the country, is a 501(c)(3) non-profit
organization. We directly assist Texas area families and
children in crisis, 24 hours a day, 365 days a year.
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From the Executive Director
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 'Tis the Season when the Tourette
Syndrome Association of Texas becomes a whirlwind of activity preparing
for our annual gala fundraiser in January. This event raises most of our yearly
budget for the entire state.
Although development is the least favorite part of my job
description - (I would much rather be with the kids and families) - it
has become one of the most necessary and important. Without significant amounts of money,
we would have no funding of our programs - no camp, no medical assistance
program, no telephone...you get the picture.
As part of our TS family, you
could be a tremendous resource for our fundraising efforts. Do you have a matching gift program at
your company? Are you employed by
a business, shop or restaurant that would donate an item for silent
auction? Do you know anyone with a
vacation home willing to donate a week to the TSA of Texas? And of course, if you would like an
invitation to the Gala, we would love to send you one.
You would be surprised at the
amazing resources a large, diverse and creative group such as ours could
come up with if we all work closely together for our collective
good. Please help us to help each
other. Call or email TSA of Texas
today!
And from our Board of Directors,
staff and from my heart - a happy, healthy, prosperous, calm and tic-free
holiday season.
Lots of love,
Sheryl
Sheryl Kadmon, R.N., has been Executive Director of TSA of Texas for over 20
years. Feel free to call or email
her at any time.
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Texas Hotlines
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Houston:
281-238-8096
Emergency
Pager: 800-209-0796
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Save These Dates!
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- Now
through January 2, 2008 - Visit the Houston Museum of
Natural Science to see the TSA of Texas Holiday Tree decorated with
art by children with TS.
- January
13, 2008 - Participate in the Houston
Chevron Marathon and help TSA get One Step Closer to a Cure! Learn More>>
- January
31, 2008 - Paris:
Cite des Lumieres. The TSA of Texas Gala at Houston
Country Club is a festive evening of cocktails,
dinner, silent and LIVE auctions and entertainment.
- March
28-30, 2008 - 6th Annual
du Ballon Rouge Children's Weekend. Learn More>>
- April
4-6, 2008 - National
TSA Conference in Alexandria, VA. Register by January 1/2008
to receive a $40 early bird discount. Learn More>>
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TSA of Texas Major Fundraising
Gala on January 31, 2008
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 TSA of Texas is hard at work
planning our major fundraiser of the year, to be held on Thursday,
January 31, 2008 at Houston Country Club. This year's gala theme is
Paris: Cite
des Lumieres, a Frankly French Evening of dinner,
entertainment and an auction. Guests will enjoy cocktails and wine,
entertainment by The Gypsies and a gourmet three course dinner, all set
in a sparkling, festive atmosphere at one of Houston's premiere country
clubs. Sample auction items include six nights at a fabulous condo
in Hawaii, a standard poodle puppy, airline tickets, dinners, home items
and more.
Chaired by Linda Davis Blumenfeld
along with Honorary Chair Vera Brown, this year's gala honors Marcie
Kirkpatrick Lipsitz, TSA National board member and civic leader in the
Dallas and Waco areas; June Bowen, a long-time Houston community
leader; and Cathy Jankovic, media producer/editor for the Parkinson's
Disease Center and Movement Disorders Clinic. Both Ms. Kirkpatrick Lipsitz and Ms.
Jankovic have children with TS, while Mrs. Bowen has long been a gracious
supporter of TSA of Texas. Our
corporate honoree is The Methodist Hospital, also a generous sponsor of
TSA of Texas over the past 21 years.
Gala is undoubtedly a fun
and delightful evening, but it also serves a deeper purpose. Our January gala event acts as our major fundraiser
of each year, raising the major portion of funds used to benefit the many
thousands of children and families in Houston and throughout Texas who
are suffering from TS via table and ticket sales, cash donations and
auction proceeds. The Fund-A-Need
portion of the auction even allows our guests to pledge $100 to send a TS
child to du Ballon Rouge, thus ensuring our weekend camping event remains
free of cost to our TS families.
Invitations to Gala will be sent
out shortly. You may request one
be sent to you by emailing your name and address to TouretteTexas@aol.com. Even if you can't attend, you may wish
to make a cash donation or contribute an item or service for
auction. Email us for more information.
Please join TSA of Texas in support of our TS families by attending or
donating to this special event!
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Medical Update: Tics and
Tourette's into Adulthood
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 by Joohi Jiminez-Shahed, M.D.
Tourette syndrome (TS) is defined by the presence of
multiple motor and vocal tics with onset prior to age 18 and with no
other medical explanation for the tics. Most of the time, there are other
features that co-exist with the tics, such as attention deficit disorder
with or without hyperactivity (AD/HD), obsessive-compulsive behaviors
(OCB, not always full-blown obsessive-compulsive disorder), mood
disturbances such as depression, anxiety, and phobias, and other
behavioral problems. The focus of this article will be to discuss factors
that may influence whether symptoms of TS will remit or persist into
adulthood.
TS is definitely a syndrome, with
a spectrum of expression that can include any combination of the major
features. For example, some may have tics with AD/HD, tics with OCB, or
tics with everything. As a consequence, TS affects people in different
ways. For some people, tics may be the major source of disability, while
for others, it may be the AD/HD, or the OCB, or again, all of the above.
It is quite common for AD/HD to become apparent by age 4, and OCB by age
7, and tics somewhere in between, usually motor before verbal. The good
news for most people is that most TS symptoms resolve or significantly
improve by late adolescence. Patients, parents, and doctors need to think
carefully about what problems are occurring and whether or not they
warrant treatment.
The worst-ever period of tics
often occurs between the ages of 10 and 12, followed later by a
significant reduction by the time they reach adulthood. Even though up to
20% of children may experience such severe tics that school functioning
is impossible or in severe jeopardy, estimates of tic remission range
from 26-90%. Other studies have shown that 20-90% of children with TS
will still have tics in adulthood, but it is not entirely clear why some
do and some don't. Some research has suggested that measures of hand
dexterity, the volume of a brain area called the caudate, or the severity
of childhood tics may predict persistence into adulthood.
The good news is that it is very
rare to see an adult with tics that are as intense as when they were
growing up. More often than not, adults will have milder or less intense
versions of their old tics. In some rare cases, we see that tics come
back after having disappeared, perhaps when people reach their 30s or
40s. We don't have good explanations for this either, but fortunately,
these individuals can be treated with the same medications that are
typically used to treat tics in childhood. When adults with debilitating
tics are not treated successfully with medications, they may be
considered as candidates for deep brain stimulation surgery, though this
is best undertaken at specialized centers such as ours. To date, we have
treated 2 adolescents and one adult with measurable improvements
following surgery.
Some research shows that children
with TS are likely to have more symptoms of OCD into adulthood even after
the tics have improved. In one study, this correlated with the presence
of a higher IQ. AD/HD may or may not improve. Some investigators have
found that children with TS are prone to develop lifelong psychiatric
problems such as depression, anxiety, and bipolar disorder. These may
become more apparent at the transition through adolescence or even later.
A few studies have looked at overall functioning in adults with
childhood-onset TS. Approximately 1/3 of adults with childhood-onset TS
will continue to experience occupational, social, or educational
dysfunction, according to one study.
Because of their TS, children may
have trouble with socialization, schoolwork, and self-esteem. The more
co-morbidities there are, the more problems a child may have, and these
difficulties may permeate into adulthood. However, the adult with TS may
have new challenges, such as getting into and completing college, getting
a job and/or staying employed, and developing meaningful relationships.
Having said that, most are quite successful at doing so and live
fulfilling and productive lives.
There are a certain number of
people who will come to the doctor's office for the first time as adults
for evaluation of tics. TS is usually diagnosed in childhood, unless
symptoms are mild and it goes unrecognized. Therefore, on careful
questioning, we often do discover that patients presenting for the first
time with tics as an adult may have had milder, non-bothersome tics when
they were growing up that have now resurfaced in a more noticeable
manner. Such patients can be diagnosed with TS. Otherwise, there are a
number of other neurologic conditions that can cause tics that should be
considered. Many of these conditions have features that are highly
unusual for TS, and therefore are readily recognized.
Adults with TS who still have
problems with OCD and/or AD/HD are treated with the same types of
medications as children with TS, with little long-term risk. Tics are treated
essentially the same way as they are in children as well, but with a few
exceptions. Depending on the severity of tics, different medications can
be used. Botulinum toxin offers relatively little risk, because it is
injected directly into muscles that are producing the abnormal movements.
This works best for a facial (e.g., eye blinking or rolling) and neck
tics (e.g., "whiplash" tics"), or other single, relatively
simple tics involving one body part (e.g., in the vocal cords, hand or
shoulder). Topiramate, a seizure medication, carries no risk of tardive
dyskinesia (TD), a condition mentioned by Dr. Jankovic in the last
newsletter. It also has a different side effect profile than other
agents, and may not be as effective when there are multiple, complex, or
severe tics.
However, when dopamine blocking
medications are needed, they can and should be used, following a careful
discussion of the risks and benefits of such treatments. Even though
these medications are highly effective, they can be associated with TD,
and this risk is higher in adults than in children. Because of this, I
try to use topiramate first, both in children and adults with tics. Using
topiramate first may also reduce the need for or the dose required of
stronger medications. Fortunately, tetrabenazine (a different type of
dopamine blocking agent) does not cause TD, and is now on its way to
being available for prescription in the United States. Until then, it
continues to be available through our clinic.
Symptoms of TS can persist into
adulthood, though they are generally not as distressing as they were in
childhood. Many factors that are not well understood may determine this.
Despite this, it is important to remember that most children with TS will
still live normal lives as adults, and should be encouraged to pursue
their hopes and dreams. Treatment options for adults with TS are quite
similar to those for children, but specific thought should be given to
the potential side effects before starting treatment.
Joohi Jiminez-Shahed,
M.D. is
an Assistant Professor of Neurology at the Parkinson's Disease
Center and Movement Disorders Clinic at Baylor College of Medicine in
Houston. Click here for further information.
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Important TSA Supported Research Opportunities
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The Psychiatric and Neurodevelopmental Genetics Unit (PNGU) seeks to achieve a better
understanding of the origins of disorders such as Tourette syndrome (TS),
Attention Deficit hyperactivity Disorder (ADHD) and Obsessive Compulsive
Disorder (OCD), with the hope that a better understanding of these
conditions will also lead to advances in their treatment. Current
projects include identifying genetic contributions to TS, ADHD and
OCD. Dr. David Pauls, the director of the PNGU and a behavioral geneticist, has for the last 30 years
focused his research primarily on neurodevelopmental disorders such as
TS, ADHD, and OCD. The PNGU is a part of the Center for
Human Genetic Research at the Massachusetts General Hospital in
Boston, MA, and is staffed by researchers representing a variety of
disciplines and with affiliations to the Harvard Medical School and
Whitehead Institute.
The PNGU team is planning to
come to the Houston area in March, 2008 to have study visits with
interested families on the following studies:
1. Genetic Linkage Study of TS: This National Tourette Syndrome Association
(TSA)-sponsored study aims to identify the genes responsible for TS.
Conducted with the collaboration of an international consortium of
researchers, this study will clarify the role of genes in the occurrence
of TS within families. This study seeks families with one
TS-affected individual over the age of six and both of their biological
parents.
2. Family Genetic Study of TS,
ADHD and OCD: This
project explores the familial relationship among TS, ADHD, and OCD, and
will specifically examine the shared behavioral components of these three
conditions. We expect that this
research will further our understanding of how these disorders are expressed,
and will promote the identification of susceptibility genes. This study
includes children six years of age
and older who have been diagnosed with TS, ADHD and/or OCD, both of their
parents and any siblings over the age of six.
Individuals who are interested in
learning more about these studies are invited to call 1-800-471-2730, or
email the project director, Dr. Cornelia Illmann, at cillmann@partners.org. Learn more>>
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Kids with TS: Deep in Our Hearts in Texas!
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That sentiment is especially true
this Holiday season at the Houston Museum of Natural Science. TSA of Texas is proud to be one of 14
organizations invited to participate in a 20 year plus tradition at the
HMNS, decorating a live 12 to 14 foot Holiday tree to showcase our
group. Located in the Museum's Grand Hall near the Cockrell
Butterfly Center, our beautiful Holiday Tree is easy to find and hard to
miss.
Our tree, entitled "TS Kids: Deep in Our Hearts in Texas"
is Texas-themed and decorated in red, white and blue ornaments. Our tree is adorned with Texas shaped
self-portraits made by kids with TS, as well as heart shaped photos
of our kids at the du Ballon Rouge Children's Weekend.
Our thanks to HMNS
Guild Volunteer Debby Posso; HMNS Guild Holiday Tree Event Chair Ali May,
and the entire Museum Guild for allowing us this opportunity to promote
TSA of Texas in such a fun and delightful way. Additional thanks go to Sheryl, Debby,
Barbara, Dianne, Brenton, Dianne, Marsha, Robert, Daniel, Beverly, Chase
and Cindy for decorating the tree.
Kudos to Daryl for creating a special "TS angel" which
now lovingly sits atop our awesome tree.
Our deepest thanks are extended
to all the children with TS and their families who provided us
with the self-portraits and pictures used to decorate the tree. The Holiday Trees will be on display at
the Houston Museum of Natural Science through January 2, 2008. Stop by to enjoy the trees and while
you are there feel free to share information about TS with fellow Museum
visitors.
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Team TSA: One Lap Closer
to a Cure in Houston on January 13, 2008
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 TEAM TSA has been accepted into
the Chevron Houston Marathon for January 13, 2008! TEAM TSA
members run, walk or cycle to benefit more than just their own
health. With every step they help TSA get One Lap Closer to a Cure
for Tourette Syndrome. The Houston marathon offers a wide variety
of events to accommodate all different skill levels. It combines a
competitive fun athletic event with a citywide festival of community
spirit. Runners and spectators enjoy miles of non-stop
entertainment provided by the unique "Hoopla Brigade."
Professional and not-so-professional performers ranging from jump-rope
squads to jazz bands to belly dancers encourage runners and walkers to
keep their feet moving. Please join our mission. Your
support makes a difference! Learn More>
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Register Now for the du Ballon
Rouge Children's Weekend
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 by Michael Conway, dBR Director
du Ballon Rouge (dBR) is a unique time and place for children diagnosed
with Tourette's syndrome (TS). Held each year in the hill
country of Texas, dBR provides attendees with opportunities
of fishing, horseback riding, canoeing, arts and crafts, a ropes challenge
course, swimming and team sports. More importantly, it
provides an opportunity to spend time with others with TS and to not
worry about exhibiting their tics. The weekend experience can
have a positive impact on a child and improve the quality of their
life. The program is designed for children between the ages of
6 and 18 whose primary diagnosis is TS. Currently, thanks to
support from our wonderful donors, there is no cost for campers to
attend dBR. Campers are assigned to cabins based on their age and
gender.
Register
now for the 6th Annual du Ballon Rouge Weekend scheduled
for March
28-30, 2008. Learn More>> and Download Application. Space
is limited so please register by completing your application as soon as
possible. Please note that the form from your physician must be
signed within eight weeks of the date of camp, but all other forms can be
turned in at this time. Acceptance letters to camp will be sent
after all paperwork has been received, reviewed, and approved.
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TSA Testifies at SSA Hearing - Tell Us Your Stories
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National TSA was
recently invited to testify at a U.S. Social Security Administration
(SSA) sponsored government hearing on Compassionate Allowance Outreach on
Rare Diseases. TSA Board Member, Nancy Thomas Baker presented TSA's
testimony before the committee. The hearing was called in response
to public concern about the eligibility requirements (SSA Disability
Listings of Impairments) as well as the lengthy hurdles and other
unnecessary burdens disabled people with uncommon disorders face when
applying for SSA assistance. Also, a stated goal of the hearing was
a commitment by the SSA to consider ways to reduce these long delays and
do away with other obstacles encountered by the community of disabled
citizens.
The SSA Commissioner has asked TSA to provide the Agency with
additional information. To that end, we would like to learn about
as many compelling stories as possible. This is an exciting
opportunity to influence change and help the most severely affected
people with TS! Please write to us if you have experienced
difficulty getting SSA benefits, such as Social Security payments and
Medicaid/Medicare health insurance coverage. This will help TSA
continue to urge the SSA to include TS on its list of impairments, base
eligibility criteria (for SSA disability) on both diagnoses and severity
of symptoms, broaden the definition of medical evidentiary requirements,
and add observation to the final screening process. Learn more>> about
how you can help.
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Could TS Symptoms Impact
Your Communication with a Peace Officer?
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Texas Transporation Code 521.125 allows the Department of
Public Safety to include on an individual's driver license any health
condition that may impede the individual's communication with a peace
officer. The health condition must be evidenced by a signed
statement (form DL-101) from a licensed physician. The
health condition as stated on the DL-101 form will be printed on the
reverse side of the individual's driver license. The DL-101
Physician's statement may be picked up at any driver license office.
Please note that medical information provided under this program is not
protected and is subject to release under the Public Information
Act. If you have further questions, please contact the Texas
Department of Public Safety at (512) 424-5089.
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13th Annual Tee Off for Tourette
a Huge Success!!!
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by Daryl and Barbara Brister, Tee Off for Tourette
Chairmen
Our 13th Tee-Off Golf Tournament was a success -- even though
we were rained out on our original date of Oct. 22. On our rescheduled
date of November 12, we had over 120 golfers show up to support the
TSA of Texas. Great weather, loads of fun, and a very worthwhile cause
made for a great day!
With plenty to eat and drink, everyone took off to participate with hopes
of winning the Tee Off for Tourette tournament. At the end of the
day, we had three teams that had the top scores, a closest to the pin and
long drive winner. In fact everyone ended up winners, as each
golfer walked away with a nice door prize. Our silent auction was a
huge success as well, helping to raise even more funds. Our
volunteers and donors were once again a major help and we couldn't have
done it without them. We are still tallying the final numbers, so
check out the TSA of Texas website soon to see how much we raised to
help TS Kids in Texas.
We are already planning for next year's Tee Off, so now is the time to
get involved and help us. If you are interested in starting a TS
golf fundraiser tournament in your area, please let me know and we can
help you get started.
Daryl and Barbara can be reached at darbar4@comcast.net.
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TSA of Texas Museum Day
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Dinosaurs, butterflies, deep sea creatures, hands-on
science, a lagoon nature walk - and more!
These are a few of the amazing, exciting, educational
and most of all fun exhibits
and activities TSA of Texas families from all over the state enjoyed
during our first annual Museum Day on Sunday, November 11. Over 250 children and adults were
treated to museum trips, most including IMAX or other special exhibits,
courtesy of TSA of Texas.
Our deep thanks goes out to: The Bob Bullock Texas State History
Museum, Austin; The Austin Children's Museum; The Museum of Nature and
Science, Dallas; the Fort Worth Museum of Science and History and
National Cowgirl Museum; the Houston Museum of Natural Science; and the
Witte Museum in San Antonio.
All attendees reported positive, glowing reviews of the
fun and camaraderie they experienced that day - so look for our second
annual Museum Day next November.
This activity sounds like a keeper!
If you have other ideas for state-wide activities, please
let us know. Bringing TS families
together for support, especially in a joyful environment, is one of our
goals!
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My First TEA Conference
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by
Emily Stark, North Texas Support Group Leader
PART ONE of TWO
Since
my son was diagnosed with TS in 2003, we have worked hard to get a
support group going in the North Texas area and keep it going. In doing so, I have had the opportunity
to meet many people within Texas Education Agency (TEA), more
specifically within Region 10, which covers Dallas County and six
surrounding counties. In 2004,
working with Margie Gunther, the Special Education Director for the
Carrollton-Farmers Branch ISD, I was introduced to Ivan Vance, Senior
Consultant, Parent Involvement and Mental Health, Special Populations,
Division of Instruction, Region 10, Texas Education Agency.
Through Ivan and Region 10, we have been able to bring speakers to our
area to help educate our parents, nurses, teachers, counselors and
administrators about TS and all of its co-morbid. Ivan has brought in Sheryl Kadmon, the
Executive Director for the Tourette Syndrome Association of Texas, whom
we all know and love; Brad Cohen, school teacher in Atlanta, GA and author
of Front of the Class - How Tourette Syndrome Made Me the Teacher I
Never Had; and also Sue Conners, the Tourette Syndrome Association's
Education Specialist. Ivan has
helped those of us in the North Texas Support Group by bringing in these
presenters to further educate and provide us all with the correct
information necessary in order to serve our children's needs and help
them succeed.
When Ivan contacted me about the Parent Organizations Academy (the first
and hopefully an annual event) and asked if I would like to participate
and represent our Region, how could I refuse? I wasn't even sure when he asked me
what I was getting myself into, but Ivan has helped us so much, it
wouldn't have mattered, I would have returned the favor. What I didn't realize was, once again,
he was helping me. And by
providing me with information, I can then help others. I initially thought this was going to
be an open forum with speakers coming in to discuss the dos and don'ts of
special ed and we would be allowed to get in our two cents! It was that and so much more!
The topics presented and discussed were the Texas Assessment Program for
Students With Disabilities; Transition Planning; Response to
Intervention; Texas Behavior Support Initiative: Schoolwide Positive
Behavior, and the Texas Complaint Resolution Process. In attendance were a representative
from each of the twenty (20) Regions in Texas, and a representative from
a group in each Region that supports parents who have children with
disabilities and are in need of special services. On the last day of the
conference, they provided time for each individual support service group
to stand up and give a brief explanation of their organization and what
the organization does. I have
listed those websites and/or contact information at the end of this
article.
When your child receives a diagnosis of any type of disability, it is
devastating as a parent. You bounce back and forth between guilt and loss
and all the child wants to know is "Am I going to die from
this?" Then you go to the
school with your diagnosis and usually what you find is the school wants
to cooperate, but they don't want to do more than is required, and they
won't tell you what you can and cannot do for your child. This is where your Special Education
Department comes in. Every school district has one and each Region has a
fully staffed department to assist you in determining what you are
entitled to as far as special services for your child's individual needs
While attending the conference, after the first couple of hours I
realized that the speakers were talking in code. Fortunately for me, I was familiar with
most of it and I had Ivan next to me to define what I didn't know. However, I unintentionally ruffled a
few feathers when I raised my hand to discuss the whole "code"
issue. I cautiously explained that
when a parent comes to the school for help, they have recently received a
new diagnosis for their child, they are naturally upset, don't know what
to do, and don't know what to expect from their school personnel. Then school personnel start talking
about IEPs, BIPs, ARDs, RTIs, and the list goes on. The parents feel confused, maybe even
like they lack the intelligence to help their own child; it's very
frustrating. It is always important
to ask questions if you don't understand any part of the process. School personnel hold many of these
meetings and sometimes forget that we, as parents, don't always know what
they are saying. NEVER feel
embarrassed if you do not understand; you cannot help your child
otherwise. Needless to say, the
ruffled feathers were soon smoothed out!
IEP - Individual Education Plan
BIP - Behavior Intervention Plan
ARD - Admission, Review and Dismissal
RTI - Response to Intervention
Let's start with the Assessment Process.
The general idea behind the process of getting your child "in
the system" goes something like this: you make a request IN WRITING regarding
your child's issues; you send this request not only to your campus
personnel, and also to the special education department for your
district, requesting your child be evaluated for Other Health Impaired
(OHI) due to Tourette's syndrome and any other co-morbidities (e.g., OCD
or AD/HD), if you are aware of any at the time of your TS diagnosis. If your child should go through some
diagnostic testing at the school, tell your child about this testing
process. Help them to understand
it is not a test for a grade so they won't be nervous, and also let them
know they are not in any trouble because of the testing.
Teachers can also refer a student for testing if they feel there is a
problem in the classroom. BUT,
keep in mind that school personnel cannot diagnosis your child. They may be able to suggest, but they
are not licensed medical professionals and you should only accept a
diagnosis from a doctor. After the
diagnostic testing is completed, a group at your school will review the
tests and make a determination as to whether your child should or should
not require special services. This
group at your child's school will usually consist of one or more your
child's teachers, the counselor, the behavior specialist, the
diagnostician, the content mastery lead, an assistant principal and/or the
school nurse. It does not have to
be all of the parties listed above; it can be a committee of just two or
more. However, if you do not agree
with the schools assessment, you can appeal.
If you and the school agree on the assessment of your child, you start
the ARD process whereby you outline your child's IEP and BIP. This entire process, from your letter
writing and receipt of such by school personnel, to the end result should
all take place within ninety (90) days.
However, most attendees at the conference agreed that they try to
get the end results and meetings scheduled within thirty (30) days. All of this begins your journey into
accommodations for your child to meet your child's specific needs, to
ensure that your child is successful.
It was also discussed that if your school does not suggest certain
services be brought in to help your child, then you need to suggest to the school what you, as the
child's parent, think your child will need in order be successful. Who knows your child better than
you? For example, if your child
has trouble with handwriting and they do not offer a suggestion like note
taking assistance, or offer the use of a computer for typing assignments,
you should suggest this to them. All school districts have funds set
aside for just this purpose. If
each classroom does not provide a computer for your child, then you can
suggest some type of word writer product that the student can carry with
them from class to class, download to one main computer, and get print
outs of all they have typed each day.
They refer to these as ATs, Assistive Technology. Again, this is just an example, as
there are many, many things to assist your child.
This article is based upon
information gathered by Ms. Stark at the Parents Organization
Academy Conference on November 15-16, 2007. The
conference was sponsored by the Parent Coordination Network, Region 9
ESC, and the Texas Education Agency.
If you have specific questions regarding your child or school,
please contact Sheryl Kadmon, TSA of Texas Executive Director, at
281-238-8096.
Look for
Part Two of this article in the next issue of "Bonne
Nouvelle". Part Two covers
the Transition/Graduation and Response to Intervention portions of the
conference.
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Texas Support Groups
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TSA of Texas has support groups in Austin, Channelview, Clear Lake, Dallas, Fort Worth, Golden Triangle, Katy, North Houston and San Antonio. Learn More>>. To start a support group in your area, please contact
Sheryl Kadmon, Executive Director of TSA of Texas, at 281-238-8096
or toll free at 866-894-8686.
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Support Group Spotlight:
North Texas
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by
Emily Stark, North Texas Support Group Leader
Our group has been busy since school started. We had a "Back to School"
Presentation in August, held at Region 10, with Sheryl Kadmon, our very
own Executive Director of TS of Texas, as our speaker. Parents, teachers and administrators
were invited and the turnout and presentation itself were excellent. We
all went away with some great information for our schools, as well as
getting to see some great pictures of the kids from camp in Sheryl's new
power point presentation.
With school starting later this
year, we kicked off the new year with a back to school swim party in
September -- with seven new
families joining us that day. As
it is for most of these children in the beginning, some of them had never
even seen another person with TS before.
It was great to see them all interacting and getting along.
In October we held an ice cream
party at the park and had two new families join us. The kids made ice cream sundaes, played
in the creek and even worked on some crafts (provided by TSA of Texas!) The kids all get along and have such a
good time together, and the parents visit and talk about problems and
help each other with solutions.
Also in October, Stacy Gayan and I worked the Frito-Lay Disability
Awareness Week. We set up a table
full of goodies and literature provided by National TSA, and we spoke to
at least half of the 3,000 employees there, and picked up 4 or 5 new
families too. It was a great
experience! We hope to be invited
again next year.
In November, all across the State
of Texas we had TSA of Texas Museum Day.
WOW - was that fun! The
North Texas Group and the Fort Worth Group linked up at the Dallas
Science and Nature Museum. There
were approximately 75-80 of us on hand to enjoy the experience. The kids get a little more at ease with
each other at every event; it's really great to watch them interact, help
each other out, and compare tics!
(This part always amuses me - the kids seem to get so excited when
they find out someone else is doing something they've also done, and then
they laugh about it).
Also in November, I attended the
first Parent Organization Academy sponsored by the Texas Education Agency
and Region 9. Ivan Vance (Parent
Advocate/Special Ed Director for Region 10) and I, as the representatives
from our area, attended the first (of hopefully many more to come) two
day conference in Austin in which we listened to speakers from Texas
Education Agency explain the Texas Public Schools System and how Special
Education works (or is supposed to work).
It was very interesting and informative! I hope to be invited back in future
years.
In December we held our annual planning meeting for the coming year.
While the kids played games, did crafts (making snowmen, necklaces and
calendars) and watched the new Tim Allen movie, Santa Clause 3, the
parents discussed 2008. We had my
niece, Autumn Schnitzius, on hand to work with the kids and keep them
occupied, so the parents could discuss what we want to do for next
year. We had some new members
attend for the first time, although they had previously joined the group
via email, this was their first face to face meeting. It's always
exciting to have new voices join us!
We'll be posting our 2008 calendar on www.TouretteTexas.org soon, so stay tuned for more
activities as well as fund raiser ideas!
I hope everyone has a healthy, happy holiday season!
The North Texas TS Support Group meets the second Saturday of each month. For more information,
contact Emily Stark at 972-307-1903 or edss60@msn.com or Michelle at michelle@cubesolutions.com.
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Remembering Our Military This Season
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Contributed by
Carrie Edwards
Chad Patrick,
brother of our own Carrie Edwards, is currently serving in Iraq. Please remember our military this
season and all through the year.
Consider sending a greeting or perhaps a small package, to
the following members of Chad's troop: Patrick, Chad; Hallo, Andrew (another
Texan!); Bedell, Derek; Robertson,
Bill; Vohs, Joshua; Ybarra,
Christina; and Durham, Jeremy. All
correspondence should be sent as:
Suggestions for soldiers packages: letters, cards, canned chicken,
canned vegetables, Rotel, Velveeta, Ramen noodles, macaroni, crackers,
canned chili, chips, Dr. Pepper, beef jerky, gum, candy, sunflower seeds,
popcorn, Febreeze, candles, Visine, hand sanitizer, mouthwash, wet wipes,
magazines, DVDs, Carmex (soft tubes), deodorant, razors, body wash,
rewritable CDs, pocket size flashlights, binoculars, lighters with caps
(Zippo style), and charcoal (Matchlight). When it comes to
nonfood items (gadgets), bigger is not better! Small items that
they can stick in a pocket or clip to their vest are easier for them
carry. You may not send pork or tobacco products. Use
your imagination! They will love anything...especially to know
we are thinking of them! And be sure to mention you read about them
in the TSA of Texas newsletter.
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Physician Referral List
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TSA of Texas maintains a list of Texas physicians who are
experienced with TS. To receive a PRL for your area, please email TouretteTexas@aol.com
with your city location. We are
also seeking to expand our list, particularly in smaller cities, so if
you have a physician who does a great job dealing with TS, please email
us his or her contact information.
PHYSICIANS: if you are interested in learning more
about TS or being considered for our PRL, please contact Sheryl Kadmon,
Executive Director, at 281-238-8096 or 866-896-8484.
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How Can TSA of Texas Help You?
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TSA of Texas is here to assist families dealing with TS
throughout the state. We offer:
- EDUCATIONAL
PRESENTATIONS for physicians, school districts,
students, parents and the community.
- INFORMATION
DISSEMINATION via packets, brochures and
telephone conversations.
- LIBRARY of DVDs, videotapes and
books.
- REFERRAL to physicians, therapists,
community services, and state and county agencies.
- ADVOCACY through
assistance with ARDs, IEP, 504 or OHI classification.
- SUPPORT
GROUPS throughout the state.
- CHILDREN'S
WEEKEND camping
program "du Ballon Rouge."
- FAMILY
ACTIVITIES such as
baseball games, museum visits, swim parties, and more.
- SPECIAL
FUNDING sources
such as the Kenneth H. Davis Family Assistance Fund.
- ...and
much, much MORE!
Call TSA of Texas at 281-238-8096 (toll-free
1-866-894-8686) or email TouretteTexas@aol.com
for more information. If you have needs other than those listed
above, please let us know and we will do our best to help.
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How Can You Help TSA of Texas?
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TSA of Texas funds its services through private donations,
fundraising events and grant support.
We receive no state or federal funding. You can help TSA of Texas
and support Texas families dealing with TS by:
- ATTENDING our fundraising events
(e.g., our major Gala on 1/31/2008),
- DONATING an
item or gift certificate for Silent Auction at Gala,
- ORDERING a tribute card sent in honor of
someone's special event,
- PARTICIPATING in TEAM TSA events,
- CONTRIBUTING via cash, check or credit card to
our general fund,
- LINKING your Randall's Remarkable Card to
charity #2493, and
- REQUESTING a Kroger Share Card.
All donations are totally tax
deductible. Learn More>>
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"Bonne Nouvelle"
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Carter Berry
(age 11) won
the third place medal for his age division in the Keller "How the
West was Run" 5k race in September. Carter is not letting TS
slow him down! Ryne
Nardecchia (age 12) has acted in numerous shows with
youth theaters, and is now making his adult professional theater
debut as Flick in A
Christmas Story. The show will be at Texas
Repretory Theater in Houston on Thursdays through Sundays from
December 5-30. Bernie
Villanueva (age 18) has been working hard
on his school's wrestling team, even recently competing in a tournament
against eight other schools! Congratulations
to these hard working Super Stars!
Please send us your "Bonne Nouvelle!" Has
your child received straight A's?
Recently graduated from college?
Are you, as a person with TS, successfully juggling home and
family? We would love to hear
about your "good news" for future issues. Or --
is there a topic or story you would like to see us cover in the
future? A question you have for
our Medical Advisory Board? Send
your question, story and/or pictures to TouretteTexas@aol.com.
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Bonne Nouvelle is published quarterly
by TSA of Texas. It is edited by Shelley Matcha and Cindy
Sacks.
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