November 2002
Page 1

From The Editor

This past August I had the experience of speaking before the Jefferson Parish School System regarding budget cuts which have now been made within the special education department. The issue at hand was the elimination of self-contained behavioral and emotionally disturbed classes, moving these students into the generic special education classes. What the school board deemed as “much needed streamlining”, I saw as a direct threat to our children’s right to an “appropriate” education. Although I am not usually an outspoken person, I felt I had to at least try to make a difference for Andrew and others.
At the time I felt frustrated by the whole ordeal. Many of the board members did not even feign attention to the speakers at the hearing and were only going through the motions. They had obviously already made their decision, choosing expedience over our children’s welfare. Special education has the biggest budget, so that was where they would make the cuts. I was angry that they didn’t care about my child or anyone else’s.
It was this anger, however, that gave way to the realization that I am the only one who truly cares about my child, and so it is up to me to be sure he gets what he needs and deserves. So now, rather than looking back on this experience as a failed effort, I see it as my first small step onto the road of advocacy. However huge and daunting a school system may seem, it helps to make steps, though they may be small, toward change. It helps because it makes you feel empowered since you are doing something and not just sitting around complaining and feeling helpless. In this month’s newsletter, you will find one such way to empower yourselves as parent-advocates. I invite you to visit the Write Your Legislator website(See p.7) and accept the invitation to open lines of communication with your representatives, the ones who control our children’s futures. It is up to us to make them understand how the issues they are voting on will affect our kids. We have to make them realize that these are not just monetary figures they are crunching and subtracting but the quality of our children’s lives. There is definitely strength in numbers, especially when counting votes. Use your right to vote to help your child receive his right to an education, one which you deem appropriate. Win or lose, I guarantee you will feel a sense of satisfaction in having tried to make a difference.

Ann Lafourcade

GENERAL MEETING:
Friday, November 15, at 7:00 p.m. at
Crane Rehab Center on River Road.
(See page 1 for details).

DECEMBER HOLIDAY PARTY
Sunday, December 8, 4:00-7:00 p.m.
Lafreniere Park, Foundation Center
Don’t miss our annual Christmas party. Santa will be there making all the kids jolly with special gifts. Please call Laurie Guichard at (985)764-0704 to let her know what you’ll be bringing. Buddy Walk t-shirts will also be available for pick up at the party. We hope to see you for a night of music, food, and Yuletide cheer.

BONCO PARTY COMING SOON!!
Due to popular demand, another Bonco party is in the works for Ladies’ Night Out. It will probably be some time after the holidays in January. It will be a great release after all that holiday stress. We had a great turnout last time but hope to see some new faces attend this time. Keep your eyes open for more information in the new year.

We join in celebrating the following birthdays in September, October, and November:

Joey Boustead 9/06/1989
Yvonne Cerniglia 9/25/1994
Jack Jurel 9/01/1998
Tess Landry 9/30/1998
Aaron Rhodes 9/30/1996
Joey Singer 9/06/1989
Gabrielle Wiltz 9/05/1997
Melinda Allen 10/30/1993
Daniel Clotiaux 10/31/1990
Matthew and Joseph Guichard 10/15/1998
Andrew Lafourcade 10/24/1998
Kallie Laird 10/10/1998
Annie Reynaud 10/26/1996
Paula Semel 10/21/1990
Anabelle Thaing Tham 10/29/1992
Katherine UnKauf 10/17/1998
Kevin McDaniels 11/16/1990
Helen Robinson 11/13/1998

We have decided to replace our Readers' Forum question and responses with a general column highlighting advice or experiences of our readers who would like to "pass it on" to everyone else. Please email us with any such information.

TalkTools
I am using the TalkTools Straw Kit ($22.00) and the Talktools Original Horn Kit ($22.00)with my daughter, Marissa. Sara Rosenfeld-Johnson created these kits as part of her business called Talktools. I am really impressed with these hierarchies. Marissa has already progressed to the second level. You can see these products and order them if you like at shop.azstarnet.com
Sue McCann

ARC's new restaurant on the Westbank
I got the email about the ARC's new restaurant on the Westbank, and I decided to go with my sister and aunt. I was a little nervous at first that it might make me sad, but I had to write all of you and tell you how much we all enjoyed it.
The place is really cute, and everyone who works there is in some way developmentally delayed. Not everyone has Downs, but everyone is really appreciative of their job there and happy to talk to you about it. Most seem to have gone to St. Michael's, but others are from the Public School system. Our waiter was Keith, a 35 year-old man with Down Syndrome. He was absolutely wonderful, and if my child grows up to be like Keith, I will consider my life a success.
We were one of three tables (they had only been open since Monday). The food was good, but the experience was terrific. Not one of us wanted to leave.
It is quite a jaunt, on Louisiana, the street that you turn on, is not marked, but take someone who loves your child as much as you do, and you will have an experience you won't soon forget.
Later that day, my mother called and asked, "Why did you go there? Didn't it make you sad that that might be all Geordie will be?"
I replied, "No, Mom, if that is how Geordie ends up, I will be overjoyed." What it did make me realize is that I don't need to worry so much about him, he's going to be fine.
Maureen Huguley

The Kennedy Krieger Institute in Baltimore has begun to study Down Syndrome and Congenital Heart Disease. It is conducting a study which will look at some genes on chromosome 21 believed to be involved in heart development. Specifically, they will look for differences between the genes of families whose children have heart defects and those whose children do not.
The four-year study is just beginning, so if you are interested in participating, there is plenty of time to join in. Participation would require the child and parents to have blood drawn. This could be done in Baltimore, or arrangements could be made to have the blood test done at your local doctor’s office. In addition both parents would have to fill out a questionnaire either in person or by phone. The questionnaire asks about family history, pregnancy history, and medical history. The mother’s questionnaire takes approximately 40 minutes to complete and the father’s only 15-20 minutes.
If you would like to receive an information packet or to get answers to any further questions, please contact the following:

Amy N. Heffner, M.S.
Genetic Counselor
Research Coordinator
Down Syndrome Clinic
Kennedy Krieger Institute
phone: 443-923-9131
email: Heffner@kennedykrieger.org

Despite some confusion over a recent medical report on WWL, the Tulane study will continue to focus on the effects of Aricept on Down syndrome adults. The trials on children will not begin for at least a couple of years after compilation of the current data can be completed.
Bee Pollack, the Clinical Research Coordinator for the Department of Psychiatry and Neurology, is still recruiting volunteers for the current Aricept clinical trial. Participants must be 18-35 year-old individuals with Down syndrome. So far the results have been very positive showing improved cognitive functioning in the subjects studied. Please contact Bee Pollack at the following address if you are interested.

Bee Pollack
Clinical Research Coordinator
Dept. of Psychiatry and Neurology
1430 Tulane Ave. HC82
New Orleans , LA 701
Tel: (504)587-7363
Fax: (504)988-6898

The Best Brother
by Tillie Plaisance

The only person about whom I could do a perfect character sketch is my brother. He has everything you could have to be a good person. He also has Down Syndrome, and he is one of the better people I know. He never fails, and when he does, he always tries and tries again. I’ve lived with my brother for eleven years, and I know him better than any other person, except my parents. My brother, Corey James Plaisance, has many qualities of a good person and teaches me a lesson everyday that no one else can teach.
It is not that hard to describe my little brother because he’s so cute. My brother turned eleven this past April on the seventh.
He is only 4’2”, and to my friends, and me that is short for his age. He says that he can’t wait to be as tall as my mom or me. Everyday he measures himself up against someone in our family and says, “ I’m getting bigger!” We notice him everyday for his blue eyes. My dad passed my brother and me those eyes, and he always gets noticed for them. They are so bright and beautiful. He has small ears too. They are so tiny against the rest of his round face, but he is so cute with them. They actually look good on him; I guess it’s just because he’s Corey, and that’s what God made him to be.
Corey has one of the best personalities I’ve ever known. All of my friends adore him. He is very kind and sincere. He is so sweet, although sometimes I reject him. He loves it when my friends come over, so he can show off his kindness and that he’s funny. He loves to make up jokes about anything, and then tell everybody them. Corey is very loving, too. He loves everybody so much, especially his family and friends. He goes through life with his high confidence and personality, loving everybody, while some people on the side or around him put him down, just because something is wrong with him. Some others, who are nicer, look at him for who he is, instead of what he has. There is nothing you could really do to put him down because he doesn’t understand everything, but he does have feelings, just like everybody else. He may not understand, but believe me, he knows when something is going on. It is just another part of his personality. This is how he goes through life. There are many stories about Corey that I could tell you all, but one story sticks out in my head, unlike others. One day, my friends and I were making plans to go to the movies. So far, we had four people able to go: Blake, Allison, Victoria and me. We were planning the basics of the night, like what time to be there, where to meet, and when to be picked up. Then we found out Victoria couldn’t go because she didn’t have any money. Well, like any nosey brother, Corey was sitting next to me. He asked, “Is Victoria going?” I told him, “No. She doesn’t have any money.” Before I go on, you need to know something. For a while now, my brother has been collecting money, or change, in a five-gallon water bottle. He has been waiting to fly in an airplane. I don’t really know why, but he has been waiting. Well, back to the story. He goes to his bottle, takes the biggest handful of change he could carry, brings it to me, and says, “This is for Victoria. Tell her she can go!” Everyone thought that was the sweetest thing.
I’ve mentioned my brother’s physical features, his personality which is great sometimes and not so great other times, and how he’s always thinking of others. I hope you enjoyed reading about him. I couldn’t ask for a better brother. I love him so much, and he brings so much joy in my life, even though sometimes I don’t pay any attention to him. Again, he is the only person who could teach me the most important thing: to look at people and things beyond the outside.

This is a website of the National Down Syndrome Society which highlights current legislation affecting our special population. It is an indispensable resource, which explains in easy-to-understand terms how the legislation will help/hurt us. When you first log onto the website, it will tell you that action alerts are no longer available. You then can click on “NDSS Letters and Action” which will list the current legislation needing your response/support. You can “Take Action” by clicking that button to enter your zip code and connect you to a program that will assist you in contacting your representative. You can then choose to either compose your own letter or use a sample letter provided. It is as simple as signing your name and providing contact information, and you’re done. The email message will be sent to your appropriate legislators. The phone number of the U.S. Capitol switchboard is provided or you can use the NDSS website to look up individual numbers. FAXED LETTERS ARE MOST EFFECTIVE; SO USE THAT METHOD IF YOU HAVE THE CAPABILITY.
Another great feature of this site is the MEGAVOTE. It is a personal account you set up by typing in your zip code. You will then receive weekly reports about how your reps have voted on the issues concerning you.
There are two important pieces of legislation being considered at this time. One Congressional committee is considering major changes to IEPs to help reduce the amount of paperwork required. They are being lobbied by groups, which are trying to eliminate annual IEPs and short-term objectives. Creating multi-year IEPs would make it virtually impossible for parents to be sure that goals are met in a given school year. Short-term objectives are particularly important to students with Down Syndrome since progress needs to be broken down into shorter steps, more realistic goals, for a particular grading period. You are asked to contact all members of the Senate and House Committees urging them not to eliminate annual IEPs and short-term objectives.
The other issue at hand is the passage of the Family Opportunity Act. This is a bill that would allow middle-income families of children with disabilities to qualify for Medicaid if their incomes are up to 300 percent of the poverty level. There are many uninsured or underinsured families who cannot afford health insurance for their disabled children. In fact, this piece of legislation is often referred to as the Dylan Lee James Act in honor of a young boy with Down Syndrome who died because he could not get proper medical care. Just recently, on September 27, the democrats tried to bring this issue to the floor, but it was blocked by one Republican senator who objected. You are urged to call or write to let your reps know how important the passage of this bill is to us, so that it may receive consideration and be passed this year.

This is a book dedicated to teaching the skills and information needed for successful advocacy. The authors offer practical advice on keeping documentation, creating paper trails using logs, journals, and calendars, and writing effective letters. In particular they highlight “Writing the Letter to a Stranger”—that person who has the power to make important decisions about your child. The person whom you may be able to influence with your cogent writing.
I see this book as a type of insurance policy to assure that all my hard work is not done in vain. “Be prepared” is the Boy Scouts’ motto, but also has to be that of the parent advocate. Such organizational skills and know-how empower parents to deal successfully with schoolsystems’ bureaucracy.

At this website, you can read articles relating to the importance of creating paper trails and documenting using journals, logs, and calendars. There is even a sample of a well-written letter provided in the article. The article appears to be a brief synopsis of everything discussed in the Wrights’ book. Also included on the site is an extensive advocacy library including articles regarding previous legal cases and information. It appears to be an invaluable resource for parents who may be hunting for facts and information with which to arm themselves in those battles to get what they need for their children. Keep this one bookmarked for future reference.

This one day version of the Wrightslaw seminar focuses on four major areas: Special Education Law, Tests and Measurement, Smart IEPs, and Tactics and Strategies. Extensive study of IDEA, 504, and No Child Left Behind is emphasized to arm parents with the knowledge needed to obtain the free and appropriate education mandated by law. The seminar also teaches effective negotiating strategies along with letter writing strategies. Keep your fingers crossed and mark your calendars now, so that you can take advantage of this excellent opportunity right in our own backyard. You can check the website www.wrightslaw.com for seminar dates and locations to verify the booking of this New Orleans seminar as the date nears.

Right after Buddy Walk Kevin came down with a bug and dehydrated quickly. He wound up in Ochsner Hospital and spent 5 days there. While in the hospital he had a visit from Visiting Pet Program dogs and it made his day. Even though he was weak and unable to interact much, we could tell he was excited to see the dogs and it helped him a great deal. I had heard many wonderful things about the Visiting Pet Program and its Reading to Rover project from a dear friend, Alison Cook, who participates with her dogs, Beatrice and Ruby Dee--both greyhounds. And during Kevin’s stay at Ochsner, I got to see first hand the benefits of this wonderful program. The Visiting Pet Program has been continually growing since its inception and currently has more than 160 volunteer handlers who visit over 35 nursing homes, hospitals, rehab facilities, and special facilities for children. But not all of the pets are dogs. There are cats, guinea pigs and rabbits too!
As I mentioned, I first heard about VPP from Alison when Beatrice and Ruby Dee started participating in the “Reading to Rover” project. Reading to Rover was designed for children who struggle with reading aloud in a group. Many children, who normally shy away from reading out loud in class, will read to the pets without hesitation because they know the pet will accept them unconditionally. Cindy Ruel of Alice Harte School in Algiers developed the reading project that offers a calm, accepting presence for children to practice their reading aloud skills. Reading to Rover has been very successful in helping many children improve their reading skills.
The VPP visits just about all of the major hospitals in the Greater New Orleans area and many nursing homes. They also visit The Arc, the Magnolia School in Jefferson, and Raintree Children’s Services, Uptown. The VPP Reading to Rover project currently visits the Algiers Regional Library, 3014 Holiday Drive in Algiers on the last Wednesday of each month from 6-7:30 p.m. If you would like more information on the Reading to Rover Program you can call Cindy Ruel at 394-3898. For more information about the Visiting Pet Program, check out their web site at www.visitingpetprogram.org.
The motto of the Visiting Pet Program is “Bringing Love and Leaving Smiles” and when they visited us at Ochsner, they did exactly that.

National Inclusive Schools Week will be celebrated in classrooms, schools, and communities throughout the country during the first week in December. The purpose of the week is to highlight the progress of our nation's schools in providing a supportive and quality education to an increasingly diverse student population, while offering educators, students, and families an opportunity to discuss what else needs to be done to ensure that their schools successfully educate all children.
The National Institute will support the 2002 National Inclusive Schools Week with an updated Celebration Kit -- containing publications that speak to the benefits of inclusive schools, suggested readings for children and adults, meaningful celebration ideas and lesson plans, and materials to use in promoting the Week -- and inclusive education -- in your community.
The kit, a list of events, and a new Web site will be available in September. In the meantime, you can:
* Check out our newly released report on the impact of last year's celebration at http://www.edc.org/urban/publicat.htm#nisw -- your school or school district may be mentioned!

The National Institute for Urban School Improvement Inclusive Schools: Good for Kids, Families, & Communities http://www.edc.org/urban

This conference in Austin, Texas is designed to provide parents, professional, and paraprofessionals with learning experiences that increase their ability to ensure students with disabilities are involved in and making progress in the general curriculum. It will also help improve your skills in planning and collaboration. Texas is big on inclusion, so we can learn much from their model in place. The second website below is the home page all about their statewide inclusion program. It’s worth visiting to see a place that embraces diversity and welcomes inclusion.

http://www.horizonmeetings.com/IWC2002BRO.htm
http://www.thearcoftexas.org/Inclusion_works/IWhome.htm

Magnolia School

Special Creations

"Special Creations" is the gift shop owned and operated by Magnolia School and is located on the grounds along River Road. The shop offers a wide array of unique gifts and decorative selections to meet all personal tastes and price ranges. We offer the public a delightful shopping experience with beautiful displays, soothing sounds, and sweet aromas.
Special Creations is an integral part of Magnolia's Vocational Program and provides a variety of jobs for our consumers. The wide selection of gift items in the store allows each person, no matter how severe their disability, to be involved in the production or creation of items sold in Special Creations. Vocational training centers operate on Magnolia's campus and are supervised and instructed by a team of professionals. Evaluations are made as to consumers abilities and talents; therefore, enabling them to be as productive and creative as possible.
Special Creations offers centerpieces and floral arrangements, unique gift baskets, balloon bouquets, personalized pencils, and special occasion decorations. The Special Creations Cooking Center provides the store with a variety of party confections sold separately or decoratively presented on trays. The Cooking Center also prepares canned pepper jelly, jezebel sauce and sweet & spicy pickles. The newest items available for customers are house and garden plants that are creatively arranged in gift baskets and decorative pots.
Everything ordered and purchased from the store are available for delivery by consumers supported in the community by Magnolia staff.

The Horticultural Therapy Program provides a greenhouse and outdoor environment to improve health and wellness, and teach vocational skills. The intent of this therapeutic program is to balance supportive services, horticulture training and employment experiences through a comprehensive training curriculum by qualified staff in an active work center. Individuals learn basic knowledge of plant care and gardening techniques that can lead to employment in the horticultural industry, Plants grown in the greenhouse on site are nurtured and prepared for sales in Special Creations. Volunteerism is also an ongoing motivation for this group. Crew members work on horticultural related sites, which provide settings in which a person can take steps towards gaining confidence, personal growth and work experience in the community.

The Arc's newest enterprise--Vintage Garden & Co. Café and Gift Shop in Westwego has been in operation for a few months now and has been serving more than just food. We all had a chance to taste Chef Holland's incredible Jambalaya at Buddy Walk. But Vintage Garden has a lot more to offer. It's also a catering business, is available for meetings and parties, the gift shop has a selection of great gifts for your holiday shopping, and Vintage Garden provides wonderful employment opportunities for people with developmental disabilities and an incredible experience for anyone dining and shopping there.
The café currently is serving lunch from 11-3 p.m., Monday-Friday with a menu of New Orleans foods, po-boys and plate lunches. (Did you know it's the only place you can get that great Creole stuffed bread besides Jazz Fest?) Daily specials will be starting soon and there are many new innovations planned as the café and gift shop continue to grow. A catering menu is available by calling Chef Bruce Holland at 341-4414. With the holidays right around the corner, you could book your next get-together at Vintage Garden or order some incredible edibles for your party at home.
Bris Campbell, Operations Director for the gift shop and café, is gearing up the gift shop for the holidays and ultimately 50% of the gifts available will be handmade by people with developmental disabilities. The gift shop includes Jewelry by Christie and paintings by several artists. Other gifts will include gift plants from the Vintage Garden's own organic garden located on the east bank and decorative holiday wreaths.
Maureen Huguley recently paid Vintage Garden a visit and told some of us about the wonderful staff there. She said the experience was unforgettable. It gave her a chance to see that her son was going to be okay. It's important to support establishments like Vintage Garden which provide meaningful employment to those in our community with developmental disabilities. And to parents of younger children with developmental disabilities, it's important to see that our children have opportunities available to them that will bring meaning and purpose to their lives as well.
Keep an eye out for future articles on the Vintage Garden & Co. enterprises. Bris says they hope to open a retail garden center in the Uptown area in the future and continue to expand the café on the west bank.

Vintage Garden & Co. Café and Gift Shop is located at 333 Sala Avenue in Westwego.