May 1997 Issue |
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Beverages: Watermelon Juice and Hibiscus Tea DrinkUpcoming events: The next meeting's topic will be: Down syndrome and Dentistry, and a summer picnic is being planned at Godfrey Park.
Salad: Jicama, Papaya and Mango Salad
Soup: Black Bean with Epazote, Mexican Fresh Cheese and Fried Tortilla Strips
Entrée: Turkey Enchiladas de Mole, accompanied with Mexican Rice
Dessert: Portuguese Poached Meringue with Apricot Sauce
Today's AdVantage featured (on Wednesday, May 14, page A-13) an article inviting parents to join our Group.
We would like to upload all our children's photographs to our web site: http://www.riverbendds.org/album.html. Please send your photograph, which will be returned after scanning, to:
Victor & Gloria BishopSTARnet Region IV Events
14 Silver Oaks Lane, Apt. #2
Edwardsville, IL 62025
June 6, 9:00 a.m. - 12:00 p.m. Putting Out the Welcome Mat: Practical Idea for Including All Children. This workshop will focus on demystifying the inclusion of children with disabilities into regular community, preschool and elementary programs. Pere Marquette Lodge, Route 100, Grafton, IL.
June 14, 9:00 a.m. - 12:00 p.m. Putting Out the Welcome Mat, Part III: Making it Work - Supports & Resources. This workshop will explore the resources available to families and care settings to accommodate all children. Carlinville Holiday Inn, Carlinville, IL.
For additional information, contact the STARnet office: 1 (800) 942-7827 or (618) 397-8930 ext. 166
News Clippings
Shattering a Stereotype, WS College Freshman Breaks Educational Ground, by Catey Sullivan, The Suburban LIFE Citizen, September 7, 1996, Section One, page 9:
In June, [Eamon]
Shannon, 18, became the first student with Down Syndrome
in Illinois to graduate in four years
from his neighborhood high school,
having met the same requirements as his peers. With his
acceptance into college
August 14, Shannon received another first.
No one with Down Syndrome has ever been admitted to a degree program at the
University of Wisconsin
before. Shannon's parents and teachers suspect that
the Lyons Township High School alumni (sic)
is the first student with Down
Syndrome in the United States to be admitted to college with the
goal of
earning a degree.
Time Magazine, February 3, 1997, Fertile Minds by J. Madeline Nash, page 55-6:
There appears to be a series of windows [of opportunity] for developing language.
The window for acquiring syntax may close as early as five or six years of
age, while the
window for adding new words may never close. The ability to
learn a second language is highest
between birth and the age of six, then
undergoes a steady and inexorable decline. Many adults
still manage to learn
new languages, but usually only after great struggle.
Time Magazine, April 21, 1997, Milestones, page 37:
Died. Gerald Gaull, 66, U.S. pediatrician, whose identification of taurine
in mother's
milk, an amino acid important for brain development, prompted
its inclusion in baby formulas;
of an aortic aneurysm; in Quito, Ecuador.
Your Child, Newsweek Special Edition, Spring/Summer 1997, Your Baby Has a Problem,
by Robina Riccitiello and Jerry Adler, page 50:
[...] life expectancy was around 9 years. Unnumbered thousands of children
perished in neglect that way, before an astounding paradigm shift that began in the 1970s, with parents who insisted on taking their Down syndrome babies home with them. With adequate care, it turned out, Down syndrome children didn't have to die before the age of 10; life expectancy is 58 and rising, according to [David] Patterson. With someone willing to teach them, most could learn to read, and some, says Lori Atkins of the National Down Syndrome Society, even have driver's licenses. It is possible, in short, for a Down
syndrome child to hold a job and live at least a version of the sort of life
that every parent dreams of from the moment he or she hears the fateful news that a child has "a problem."
A normal life.
Resources
Play Pals
Location: Saint Anthony's Wellness Center, Alton Mall. A developmental program
for
children ages 3-12 months (Tiny Pals); 12-24 months (Mini Pals); and
2-3 years (Motor Pals) a
and their parents. Activities are provided that enhance
the developmental and visual skills of
children as well as their self-confidence
and social play. Fee: $30 for 6 classes.
Six-week session starts June 9,
ends July 14. Coordinated through Saint Anthony's Occupational
Therapy
department, 463-5340.
Playful Harmonies
The Playful Harmonies program uses music to foster rational thinking skills, encourage
emerging or slowly developing motor skills, and to promote language
development. Classes are
held in Troy and Belleville. Summer session cost
is $50. For information call Dana at 236-1107.
Hanen Workshop for Speech Language Pathologists (SLPs)
The Communication Disorders
Department at Fontbonne College in St. Louis,
MO is hosting a Hanen Workshop on Involving
Parents as Language Facilitators
June 19-21, 1997. The workshop is being attended by SLPs
from all over the
state of Missouri, as well as Illinois, Indiana, Wisconsin and Puerto Rico.
For more information on the workshop, contact Lynne Shields (314) 889-1464.
Down Syndrome Newsletters Articles
Reprinted with permission from Down Right Active, May 1997, the newsletter
of the Tidewater Down Syndrome Association:
It's Karate by Rebecca Renlema, PT
Pediatric physical, occupational and speech therapists have long been serving
the needs of
a variety of developmentally delayed children, most often in
a gym setting with special
therapeutic equipment. With the push for more
and more functional activities as the focus of
treatment, therapists have
taken on the challenge of looking for effective ways of providing
this. There
has been a greater use of community resources that will both meet the therapeutic
needs of the child and gain the interest of child and family alike. With
the help of Mathew
Obenaus, instructor of Tae Kwan Do at the Martial Arts
Education Center in Chesapeake, we have
found a great place to deliver therapy!
We can serve the special needs of the children we work
with in a more natural
environment, and allow interaction of family members on a new level.
Currently, I have a small group of pre-school children in a specially designed
karate
class in which typically and atypically developing children interact.
While researching
different types of sport/recreational classes in the community,
I discovered that the movements
and theories in karate are very useful in
addressing many of the goals given in therapy. With
the use of a variety
of stances, kicks, punches, blocks, and combinations of movements, karate
works on gross and fine motor skills as well as language issues.
For gross and fine motor issues, we work on balance, strengthening, range
of motion and
body awareness, as well as improving hand function. This is
all accomplished in a socially
acceptable, non-violent manner. Karate uses
several stances, as well as a semi-squat position,
which require increasing
leg strength and hip range of motion to maintain. The child must also
keep
the trunk erect and in a functional position for the use of hands and eyes
and mouth. It
also teaches a variety of kicks that increase the use of one
leg stance during a dynamic
activity. This directly relates to improving
gait patterns by elongating the leg muscles and
gaining isolated hip, knee
and ankle motions with maturing balancing reactions. Through the
use of punches
and blocks, children can gain better awareness of arm and hand position while
strengthening abdominal and shoulder girdle muscles, as well as working on
isolated muscle
control of the upper body.
Sequencing, motor planning and eye-hand coordination are easily
addressed
with activities presented that require a combination of karate movements
and
improvised obstacle courses. There are also activities that require the
repetition of a
specific movement, getting increased input to the brain about
what the body is doing while
emphasizing more fluid movement in optimal posture,
as well as efficiency of movement and
conservation of energy.
In working with Mr. Obenaus, we have been able to create a
non-threatening
environment where the children can work through new activities while
watching
movements modeled for them, then gain the approval of the class while
successfully
completing the movements. The inclusion type environment in
this unique setting provides for
each of the children to learn from each
other while they work. They progress at their own rate
and in their own manner.
The class requires both individual and group efforts to achieve the
individual's
goals. It also easily pulls in the rest of the family or caregivers, which
creates
a more normal and motivating environment, creating increased
opportunities for carryover at
home in a fun and friendly manner.
Web Wanderings
National Down Syndrome Society (NDSS) Announcement:
CBN (Christian Broadcast Network) News will be airing a segment on Down syndrome
on Friday May 23. The story can be seen on the Family Channel at 10 a.m.
and again at 10 p.m.
Myra Madnick, NDSS executive director, and Elizabeth Goodwin, NDSS board
president and
co-founder, were interviewed for the story yesterday. Chris
Burke, NDSS National Goodwill
Ambassador, and his mother, Marian, will be
interviewed live from the CBN studio after the
segment. CBN News has a national
audience of approximately 1 million viewers.
Piracetam Study Information. Reprinted with kind permission of Dr. George T. Capone, M.D., Kennedy Krieger Institute (KKI):
History
In July of 1995, Dr. George Capone (Director of the Down Syndrome program
at KKI)
announced at the NDSC Conference in Washington DC that researchers
at KKI were planning to
design a study to determine if the drug Piracetam
is safe and beneficial to children with
Down Syndrome.
In June of 1996, plans for such a study were delivered to the National
Institutes
of Health, Institute of Child Health and Development-Mental Retardation
and
Developmental Disabilities Branch. A randomized, triple blind, placebo-controlled
design
with a crossover in treatment was proposed. The study was designed
to take 3 years.
In November of 1996, we were informed that the scientific review of the grant
was
complete. It was determined to be not fundable at this time, primarily
because of a lack of
convincing preliminary data (proof) which indicates
any benefit from Piracetam for children
with Down Syndrome.
In January of 1997, the KKI research team began its plans to revise the study
so that
preliminary data could be obtained in a relatively short period of
time. A randomized, triple
blind, placebo-controlled design without crossover
was planned. The revised study proposes to
study 60 children ages 5-8 years
old. 30 will receive piracetam, 30 will receive placebo for
12 months.
In March 17 of 1997, a revised proposal was submitted to the Food and Drug
Administration for funding consideration under the Orphan Drug Program. We
were informed by the
FDA that results of the scientific review would be complete
by September of 1997.
If funded the proposed research could begin by the
beginning of 1998.
The Present
We are hoping to begin a smaller preliminary study by the summer of 1997.
Private sources
of funding are also being considered, however we have no
such funds to begin the study at this
time.
KKI cannot provide written information regarding our proposed research study
at this time.
If we receive sufficient funding to begin a Piracetam study we do not anticipate
the need
to recruit subjects from beyond the mid-Atlantic region. We will
be in contact with families
who have expressed an interest in the study
previously.
Common Misconceptions
Piracetam is a drug, not a nutritional supplement. It has been well studied in animals and
humans including children.
KKI has not begun its study of Piracetam.
The current state of knowledge regarding safety and efficacy of Piracetam in children with
Down syndrome is no further advanced than it was 2-3 years ago.
Future Plans
In the event that Piracetam is found to be safe and beneficial in Down Syndrome,
KKI will help facilitate other studies in these United States of America.
We will collaborate with others to duplicate the study fundings at several
medical centers in
the U.S. and Canada. We will also initiate studies in
younger children (under age 5 years) with
Down syndrome.
Father's Journal
Lilly
I never knew my godmother. I was six years old when we left to Mexico, and
the
whereabouts of my godmother Lilly were lost. It was only much later, after the funeral of my
aunt, that my father asked me if I knew whom the waitress was, as she kissed my father on the
cheek. I told my godmother Lilly that I had been thinking about her, as my wife was seven
months pregnant, and considering who our baby's godparents should be.
Lilly's first husband
was interned in a hospital with a heart condition and Lilly was abandoned for a nurse; she
proudly gives me a postcard from the Hall of Fame with the picture of the last spitball
pitcher, who left her a widow and a waitress. Over the phone, she tells me she changed my
first diaper and I break her heart, once again, as I explain that my son was born with Down
syndrome.
A Miracle
My wife told me that her mother is praying for Emmanuel. In her simple, powerful faith she
is praying to rid my son of Down syndrome. She is asking for a miracle and has instructed us to
place our Lady's image, that of a shrine in Mexico, near Emmanuel's bed.
My faith is not meek; with trepidation I ponder if each cell in her latest grandchild were
to be altered. We are truly blessed by Emmanuel and every time I see his little finger less
curved, I know she is praying for my son.