November / December 2003
Page 1

Ann Lafourcade

Debra Beckman's
Personalized Oral Motor Program
By Ann Lafourcade

On October 23 Debra Beckman, a specialist in motor speech disorders, spoke at a special meeting about her oral motor program. She has developed a program composed of stretch reflexes and assisted stretches designed to get muscles moving. Using a ratio to quantify change over time, she has been able to provide statistics to document improvement in her clients--the cold, hard proof insurance companies demand to continue services. The ratio measures range, strength, variety and control of movement in the lips, cheeks, jaw, tongue, and soft palate by response to pressure and movement. Her program differs from more generic interventions that may over-activate muscles making them work too hard, the disadvantage being decreased stamina and repetitions which result in less muscle growth.
The majority of her cogent presentation focused on before and after pictures with detailed explanations of individualized programs. Ms. Beckman explained that the face is like a spider web of muscle fibers. Many of the before pictures showed soft tissue deformity due to hypotonia with facial muscles hanging down from gravity. After as little as eight weeks of sessions lasting 3-5 minutes at a time, drastic improvements in overall facial appearance were seen.
Some specific issues concerning Down syndrome were discussed. It was explained that for speech, adequate posterior cheek and jaw strength are essential. The validity of an apraxia diagnosis without first ruling out oral motor deficits was questioned because it only makes sense that movements for speech cannot be planned if muscles are too weak to perform them.
Teeth grinding was also related to weakness in these areas, and Ms. Beckman suggested the insertion of a non-food item into the back of the child's mouth when grinding starts. Eventually, the child will automatically begin using it before grinding.
Of course, eating difficulties can also be improved with oral motor therapy, but she indicated that even though a child may not appear to have any eating problems, he/she could still have weak muscles. Again, it is best then to rule out oral motor problems before making other diagnoses.
We were honored to have Ms. Beckman speak to us. Just as impressive as her knowledge, experience, and success rate, though, was the genuine sense of concern she expressed for each client. She never starts exercises without first assessing strengths and then developing a plan specific for each individual. She looks past the problems to the person--the mark of a true professional.

A Buddy Walk Thank You
By Marian Hauth

As chairperson of the 2nd Annual Buddy Walk, I want to thank all of those involved in making 2003 such a success. By success I am not talking about how much money we raised. Although that is important and we have already exceeded what we made last year with more coming in each day; what is more important is the feeling you go home with after the event. It is a day of celebration of all people with Down syndrome and the lives they have touched. It is a day for families and friends to enjoy. It is a time to catch up with old friends and form new bonds.
For the past 2 years, I have been honored to be a part of this great event. I thought this year the newness would be dulled, but that didn't happen. I was overwhelmed watching families crossing the finish line again this year and I hope that feeling never wears off in the years to come.
This year there were again over 1300 participants. Our food and drink vendors were plentiful. The Archbishop Shaw High School Marching Band along, with the St. Michael's Cheerleaders added a festive air to our walk and party. And the TopCats and Radio Disney were spectacular as our musical entertainment.
All of this came together with the hard work of so many people--Paula and Kirby LaCour, Karen and Matt Scallan, Kate Kenny and David Koscielniak, Rick Naiser, Karen and David Oseguerra, Barry and Sheila Plaisance, Pat and Ken Ehrle, Ann and Brian Lafourcade, Donna and David Diemel and Don Owen. Others, like Sol Grishman, Maria Morantine, Lydia Guillot and Clementina Garay, Trisha Cochran, Lea Williams, Fabian Zeringue and Mike Rapier, Jr. volunteered and devoted tireless energy to our cause even though they are not members and do not have relatives with Down syndrome.
I would especially like to thank two of our self-advocates, Cindy Scalia and Craig Blackburn who were our judges for the spirit sign contest and two of our banner carriers. Cindy was also our Awards Emcee for the day and she did a great job! Much thanks also to our other banner carriers, Kyle Koscielniak, Corey Plaisance, Carolyn Pic and Hannah Staub, who did a wonderful job carrying the banner.
This year, several local schools held Dress-Down Days for Down Syndrome: St. Christopher's, St. Louise deMerrillac, St. Georges, John Shaw Elementary, Cabrini High School and Estelle Elementary. These schools all contributed greatly and we thank them and their wonderful students for their participation and generosity.

By all accounts this year's Buddy Walk was a wonderful success. All of the pledges and donations from school dress-down days won't be in until the end of the year, but we know we've exceeded last year's totals and had just about the same attendance as last year.
This year's Buddy Walk participants were treated to some fabulous new features. Members of The Archbishop Shaw High School Marching Band led our walk with some great music. These wonderful kids voluntarily gave up their Sunday morning to play for us and lead the walk and they were fantastic!!! A lot of thanks goes to these young men and their band director Mr. Todd Cranson. They are a credit to their school and should be very proud.
Participants this year were also cheered on by the tireless efforts of the St. Michael's School cheerleaders. These young ladies showed exemplary talent while participating in our walk. One young lady was even doing back flips down the street as the walk progressed!!! Their spirit and enthusiasm helped get everyone into the mood for the big party after the walk.
And what a party! Cox Communications' give-aways were thrown to the crowd and many many door prizes were given away. The food was great too-this year's culinary newcomers included Gumbo by Magic Seasoning Blends and Jambalaya by David Koscielniak, Tony Hoover, Carl Tabb and Suzie Scurlock!! And Robear's Sno-balls in Harahan, helped us cool off on a hot autumn day. Much thanks to Ms. Robert and Sheila Marriott of Robear’s for their generosity.

Tillie’s Corner
By Tillie Plaisance
A Story to Remember...

As everyone knows, on October 19, 2003, we held our annual Buddy Walk. Like we had hoped, it was a beautiful day and we had a great turn out. My brother had a grand time enjoying himself.
Like any other event, my brother invited all of his friends and family members. Expecting that his plan would be successful, Corey went through the morning without a care in the world. Around 8:00 am Corey started to line up with the other kids to get ready to lead the Buddy Walk with the banner. As Shaw's band began to play, the crowd began to walk.
A few minutes into the walk, my brother noticed that my Uncle Roland and my Aunt Debbie hadn't shown up. Corey became upset and frustrated because they said they would be there. My mom called my uncle and asked him where he was, but before he could answer, my brother took the phone and began yelling at him and then hung up before my uncle could explain himself.
My uncle was upset that night knowing that my brother was mad at him, but it wasn't the first time, so my uncle figured that Corey would be over it by the next day. Unfortunately, he was wrong. Corey wouldn't speak to him for days until he finally got on the phone and said, "Big RoRo" (that is his nickname), "I'm very mad at you! You broke my heart and you made it bleed! You made me sad and I cried. My momma has to call 9-1-1, the ambulance, because my heart's broken and it's bleeding!"
Once again he hung up with out saying, "Good-bye." Later on that night, my uncle called my Mom because he felt so bad that Corey was still upset with him. My mom just told him not to worry about it because he'll get over it.
A few more days passed and Corey still wouldn't talk to my uncle. Finally, my uncle got my brother on the phone and said, "Corey, what can Big RoRo do to make you forgive me?" As Corey thought this through, he replied, "You have to buy Corey some flowers so I feel better." My uncle just told him, "Okay Corey." The next day when we arrived at home, a vase of flowers and a heart shaped balloon were placed on Corey's desk in his room. It was from Big RoRo along with a note for Corey to call him and saying that there were band aids on the balloon to signify that his heart was no longer broken.
After this Corey called my uncle and forgave him, and they lived happily ever after! THE END!

It's official!! DSAGNO is now a 501c3 organization according to the IRS. What does this mean for DSAGNO? It means we will now be eligible for grants and to receive matching funds from United Way. We can also hold fundraising campaigns we so desperately need in order to expand our member base and to better assist our current members.
Currently the organization is in need of funds for printing costs, postage and many other things. With 501c3 status, we can seek grants for such things as the printing costs for a new parent package, brochures to send to potential corporate donors and many other things. Receiving 501c3 status is a turning point for our organization-the main key which will allow DSAGNO to move to the next level in terms of the number of families we help and the good we can do in our community.
This was no small feat and is due entirely to the dedication, hard work and sheer determination of one person…our President, Paula LaCour. Much congratulations and thanks to Paula!!!

From My Side.
By Craig Blackburn
Advocate’s Profile...
Heather Marie Hancock

The subject of last month's article was my trip to the National Downs Syndrome Society (NDSS) conference in St. Louis. One of the best parts of the trip for me was being able to meet new people who have become friends.
One of the people I met was Heather Marie Hancock from Moore, Oklahoma. Heather is going to be 20 years old on Thanksgiving Day and she is a junior in high school. Heather is a self-advocate and is very active in her school and community. Heather attends job training in the morning and attends classes in the afternoon.
Heather participates in Special Olympics in golf, bowling, swimming, basketball and track and field.
Heather enjoys going to her high school football games, going to movies and out to eat and playing golf and basketball.
I asked Heather if she felt different because she has Down syndrome and she said she does. Heather has a positive outlook on it and says that she feels special because she has the opportunity to participate in Special Olympics and not everyone can do that.
Heather lives at home with her parents, Lisa and Bill and her sister, Jennifer. Heather and Jennifer will graduate together in 2005 from high school. Heather does not drive, but her aid and parents provide her with transportation.
What are Heather's hopes for the future? Heather wants her parents to build her an apartment behind their house when she graduates and she would like to go to college. One day Heather wants to marry. Heather and I have communicated through email and phone since July and are getting to know each other. She has become a good friend!
Heather is another good example of a self-advocate and she shows how hard work and a good attitude can make things happen.

In October of this year, Shari Roan of the Los Angeles Times reported that scientists now feel that Down syndrome can actually be treated. According to Roan, scientists at Stanford University Medical Center have “identified abnormalities in the nerve cell structure of people with Down syndrome, differences that appear to be responsible for much of the brain damage that is the hallmark of the disorder.”
It appears that our now greater understanding of the brain in general, over what we understood only 15 years ago, and the mapping of chromosome 21 have triggered a greater interest in the possibilities of treatments and maybe even a cure for Down syndrome. Researchers are identifying what the 225 genes of the 21st chromosome, the smallest of the 24 human chromosomes, actually do and which one(s) actually cause the problem of abnormalities between nerve cells in people with Down syndrome. “Fixing the defect may involve turning off the extra copy of certain genes.”
Dr. William Mobley, a pediatric neurologist at Lucile Packard Children’s Hospital at Standford told Roan that it is definite that a gene causes this problem. The task at hand is to locate that gene or genes and turn off the third copy. Mobley also feels that a drug could be produced that would turn off the gene copies and could be administered at any point in life to improve the brain function of someone with Down syndrome. These treatments are still a long way off, but think about where we were not all that long ago and this almost seemed like science fiction back then. Now there is hope that maybe our children or the ones that follow them will have even greater opportunities than we ever dreamed possible.

Marian Vigo Hauth, Vice-President of DSAGNO and Buddy Walk Chairperson, has been nominated for the Louisiana State Developmental Disabilities Council. Marian, a 2002 graduate of Partners-in-Policymaking, has been an advocate for the rights of people with Down syndrome and other disabilities since the birth of her son, Joey, who has Down syndrome.
She has worked with community leaders and school officials toward bringing inclusion to our parochial education system, lobbied officials in Baton Rouge at the annual "Pie Day" and is a devoted advocate who believes we can create a better world for our children.
Marian was also one of several individuals to lobby NDSS for a future convention in New Orleans during this year's NDSS Conference in St. Louis. Marian Hauth would be an incredible asset to the DD Council as she is aware of and works toward bridging the difference between the needs of the disabled in the community and the lack of funds so many state agencies are suffering. Congratulations to Marian on her nomination and best of luck during the confirmation process!

Our House
A Parents Perspective...
By Kirby LaCour

Siblings of children with Down Syndrome. How can they help?

At our house Hannah has only one sister, Megan. And these two girls are quite a pair. The love they have for each other is wonderful, and so is their respect for each other. There are times when things do go astray, but they usually work out well between each other.
Since Megan was able to tell something was a little different about Hannah, we began talking to her about Hannah and her differences. We know that it is all not understood, but Megan does understand enough that she can help teach her little sister in many different ways. For instance, Megan looks out for Hannah making sure she does not get involved in things that she should not around the house and out in public. Megan also understands that if she is a fairly good role model for Hannah, Hannah will learn from what Megan does. While that can be detrimental in some ways, for the most part it has had positive reflections towards Hannah's development. Whenever Megan has homework, or wants to read and write, Hannah also wants to do the same. Therefore, Hannah learns new words, letters and does a lot of speech, oral, gross and fine motor skills in the process of doing art projects, page turning, and reading or trying to read. Also, as Megan is involved in extra-curricular activities, Hannah wants to do the same things. Again, this has benefited Hannah in physical motor development.
I am not saying that siblings should be a third parent, but they should be allowed to be part of the development of their brother or sister with Down syndrome. Not all siblings will be enthusiastic about being so involved, so you have to make it fun. Here are a few pointers that may work for you. 1) Find mutual things or games that both enjoy and let the sibling lead the way, but not overpower the situation. 2) When siblings have homework or want to do projects ask them to help out and sort of play teacher. 3) Never force a sibling to work or play with their sister or brother, but explain the benefits and positive aspects of their role. 4) If there are no siblings, then you become one and let the kid come out in you!
I do not know who said it but, "the family that plays together, learns together." I think that is pretty true and it works at Our House

Research From Two Perspectives
By Karen Scallan

When I first heard about possible research into the causes and effects of Down syndrome soon after my son , Kevin, was born, my impression was that it was mainly genetic research--i.e., something in it's infancy that wouldn't reap results until the distant future. But in writing for this publication and in researching possible ways to help Kevin, I learned that this was not the case. Sure, genetic research is being conducted and holds definite promise, but there are all different kinds of research projects and studies that are ongoing and others that are completed which offer results that could benefit all people with Down syndrome today and change the course of their lives in the future.
Think about it. It wasn't that long ago when the life span of people with Down syndrome was very short. Many babies didn’t even survive. Research is what has brought about new innovations in heart surgery and treatments for many of the physical problems associated with Down syndrome which now enable our loved ones to live longer, healthier lives. Now, people with Down syndrome have a life expectancy of 56 years and many live much longer. There's even one known case of a woman with Down syndrome who live to the age of 85 with no diminished mental capacity during her 85 years.
We have also learned a great deal in the areas of speech and language development and gross and fine motor therapies. A few years ago no one even heard of pediatric developmental apraxia or oral motor therapy, but today, there are experts in the field around the country. A recent study at the University of Michigan brought about the new treadmill therapy which has proven to help children with Down syndrome walk at an earlier age, thus enlarging their universe and enhancing and encouraging their other senses and skills to develop sooner.
Then there is the current study that could potentially improve the attention, language orientation and memory of those with Down syndrome. This study is being conducted right here in New Orleans at Tulane University as well as many other facilities across the country. Clinical trials are available now for both the 10-18 year olds and 18-35 year olds. NDSS lists many studies on their web site including ones in language, speech, aging, neuropsychology and congenital heart defects and, world-wide, there are even studies to determine if there is a link between the proximity to landfills and incidence of Down syndrome.

The following was condensed from the Mile High Down Syndrome Association's web site. For the full text, go to www.mhdsa.org on the web.

More than forty parents attended the recent presentation by Dr. Alberto Costa, who came to ERI [Eleanor Roosevelt Institute, a leading genetics research institute] some eighteen months ago. I was astounded to hear that research in Down syndrome is funded at an extremely low level comparative to other disabilities. The majority of research funds are raised by national foundations interested in a single disability. …
One reason is that in the past, most research has focused on methods to identify Down syndrome during pregnancy, with the idea of terminating the pregnancy. Understandably, most parents of children with Down syndrome find this offensive, and have not therefore supported research. Secondly, most of our energy as parents has gone into early intervention and working towards the inclusion of our children in the community.
However, this [greater community] acceptance has led to complacency on the part of parents. Dr. Costa compares the general outlook on Down syndrome today with that of mental illness in the 1950s. "Fifty years ago, parents and family members were told to accept mental illness in their children as unchangeable and untreatable, a fact of life. However, later medical research identified numerous drug and behavior therapies that dramatically decreased the unwelcome manifestations of mental illness and greatly increased the quality of life for these individuals. What if there are similar drug, nutritional, or physical therapies that might make a similar gain for our children with Down syndrome? Without basic research to identify the deficits associated with Down syndrome, and further research to test drug or physical interventions to ameliorate these deficits, we will never know."

If a drug or other therapy was discovered that could raise IQ points by 20, this is what it would mean to our family members:
* 300,000 individuals with DS
* 70 individuals with IQ below 35 (severe to profound mental retardation)
* 20,000 individuals with IQ between 35 and 55 (moderate mental retardation)
* 130,000 individuals with IQ between 55 and 70 (mild mental retardation)
* 130,000 individuals with IQ between 70 and 85 (borderline or simple delay)
* 20,000 individuals with IQ above 85 (normal range)
Let's dream big! What can we as parents do, to make this come true? There is no master plan for basic medical research; what works is to provide the funding to study a problem, and let the scientists search for answers. Today, Down syndrome attracts little interest among research scientists due to the low level of funding. If the funds are available, scientists will flock to the field, and unlock the mysteries of Down syndrome, and more importantly, how we can improve the quality of life for people with Down syndrome today and in the future. As parents, we need to support research by advocating for funding and sharing our own resources. Let's raise the awareness of Down syndrome in the medical research community . . . we've seen what the supporters of muscular dystrophy, autism, diabetes, and other medical disorders have accomplished, and we need to make this happen!

Testimony before Congress on the Importance of
Down Syndrome Research a First for NDSS
By Karen Scallan

On May 14, 2003, for the first time, testimony was given before a Congressional Subcommittee of the House Appropriations Committee on the importance of increasing federal funding for Down syndrome research. George Will, nationally-recognized newspaper columnist and television commentator testified along with Congressman Pete Sessions of Texas and Congressman David Dreier of California.
Mr. Will's son has Down syndrome and his testimony included requests for increased funding for critical research at the National Institutes of Health and the Centers for Disease Control. NDSS has had a long financial partnership with NIH and the National Institute of Neurological Disorders and Stroke to fund grants for studies in cognition, behavior and related therapies for Down syndrome.
Will testified that "Our understanding of the genetic basis for Down syndrome has also advanced markedly. While doctors cannot tell new parents that their babies with Down syndrome can be cured, they can tell them that current research gives us hope that perhaps in the next 15 to 20 years we will be able to treat the disorder and substantially reduce the degree of mental retardation. The mapping of the human genome, and in particular Chromosome 21, has turned scientific inquiry of the treatment of Down syndrome on its head."
He went on to say that "researchers are also exploring ways to reverse the early cognitive decline in persons with Down syndrome.… Close to 50 percent of individuals with Down syndrome over the age of 35 will develop the clinical signs and symptoms of Alzheimer's-type dementia. All persons with Down syndrome will develop the neuropathology of Alzheimer's disease, even if they do not demonstrate dementia. Current research into the process by which Alzheimer's disease evolves in persons with Down syndrome affords the opportunity to understand an important link between development and aging in all individuals."
Will described the current state of research as being at a critical juncture and that we cannot now afford to slow the pace of research. He stated that what would be a small initial investment in research comparatively would reap enormous benefits in the future in terms of decreasing federal expenditures on social programs for people with Down syndrome and would improve the quality of the lives of those living with the disorder.
"It is estimated that the costs of providing early intervention and special education services, housing, community support, and health care to persons with Down syndrome amount to $7 billion annually.

DECEMBER
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Deuel Kennedy
Morgan Simon
Joseph Cashen
Thomas Ranier
Christina Paci

Thank you to Our Buddy Walk Buddies!!

Resignola Construction Co., Inc.
Tom’s Printing
Radio Disney
Alpat Company, Inc.
Smoothie King
Gambit Weekly
URS Corporation
Boland Marine
SEA Associates

We have had a few inquiries about our current web site and are very pleased to announce that we will be launching an entirely new, more informative web site for the New Year! Unfortunately this has meant that our current web site isn’t as current as it could be. Since resources are limited, we’ve been concentrating on making the new site the best parent support web site out there. The address will remain the same, but the site will be entirely new.
Watch your mail and DSAGNO News for the announcement and the launch date!!!
If you have any questions, comments, ideas or items for input on the website, please contact Karen Scallan at 846-6903 or kscallan@cox.net

2004 CONFERENCE DATES ANNOUNCED

The 2004 National Down Syndrome Society Conference will take place at the JW Marriott Hotel in Washington, D.C. from July 22 - 25, 2004. This year's conference will celebrate the 25th anniversary of NDSS and highlight our anniversary theme, "Empowering. Reaching. Achieving."

The 2004 National Down Syndrome Congress Conference will take place at the Hyatt Regency in Minneapolis from August 20-22, 2004.

Buddy Walk 2003 Volunteers
Maria Morantine
Sol Grishman
Lydia Guillot
Clementina Garay
Lea Williams
Trisha Cochran and the Kenner North Kawanis Club
Bellsouth Retirees
Festival Recording Studios Volunteers
Fidelity Homestead Volunteers
Fabian Zeringue
Sheila and Richard Marriott
Archbishop Shaw High School Band
and their director Todd Cranson
St. Michael’s Cheerleaders
St. Martin’s Episcopal
Grace King High School
Academy of the Sacred Heart
Cabrini High School
Mt. Carmel Academy
Hahnville High ROTC
Delgado Community College

St. Michael’s Special School will hold it’s annual fundraiser on Monday and Tuesday, January 26-27, 2004. Doors open at 9:15 a.m. and the chefs start working their magic at 10:00 a.m. Lunch is served between 12:30 and 1:00 p.m. This year’s Chef’s Charity for Children will be held at the Hilton Riverside. Individual seats are $35.00 each. Tables of ten can be reserved under one name by contacting St. Michael’s at 524-7285. Checks should be made payable to St. Michael’s Special School or Chef’s Charity for Children and sent to St. Michael’s attention Ms. Jane Silva, 1522 Chippewa Street, New Orleans, La 70130.
DSAGNO has one table for 10 reserved. If you would like to go with the DSAGNO group, PLEASE CONTACT MARIAN HAUTH AT 833-1588.

Bancroft Neurosciences Institute
Research Announcement,
November 20, 2003
Adults with DS and Vitamin E

Bancroft Neurosciences is recruiting participants with Down syndrome who are 50 years of age or older to join a multicenter Vitamin E Study sponsored by the National Institutes of Health. The purpose of this study is to determine the benefits of high dose Vitamin E in preventing or slowing the effects of Alzheimer Disease in older individuals with Down syndrome.

The study includes:
• Physical and Neurological Examinations
• Cognitive Tests
• Multivitamin & Vitamin E
Call Dr. Pnina Mintz at (856) 616-6445 or (856) 616-6442 for more information.

Websites

The Arc’s Human Genome Education Project
The Arc tackles tough questions about the ethical, legal and social implications of genetic knowledge. http://www.thearc.org/depts/genome.html

The Nth Degree
Find great t-shirts on Advocacy, Empowerment, Inclusion and Diversity and much more!
http://www.thenthdegree.com/catalogue.asp

Special Needs Planning
http://www.specialneedsplanning.com/

Coming Soon!

Since Joel Mendler will be talking to us about Special Needs Trusts and preparing for the future of our loved ones, the next issue of DSAGNO News will focus on those and other legal issues that families face. Look for Holiday Party Highlights and Thank Yous in our next issue too!!