May / June 2003
Page 1

Summer can be a much needed break from school. It's important, though, that those summer days don't get too lazy. To help keep our kids active and fit, our June meeting presents two programs that offer participants not only exercise but also a sense of pride in seeing what they can accomplish.
The next General Membership meeting will take place on Friday, June 13 at 7:00 p.m. at Crane Rehab (101 River Road, Suite 112). Mr. Jim Gordon, head coach and volunteer recruiter from the Special Olympics, will show a short video and speak about how interested members can get involved in Special Olympics. Also at this meeting, a representative from JoJo's Hope will tell about its adaptive aquatics program available at Elmwood Fitness Center.
Everyone has heard of the Special Olympics but may not realize it is the largest volunteer organization in the world with programs in over 183 countries. The organization has been given a grant to "reintroduce" Special Olympics to the New Orleans area after a ten year absence from the school system. Their goal is to enroll 1200 eligible athletes into the program by the end of a three year period. Volunteers are also needed to serve both as coaches working directly with the athletes as well as in non-coaching support roles such as event coordinators, fundraisers and other key roles.
The current Special Olympics program offers sports activities in bowling, swimming and conditioning, and will soon be expanding with a track and field program. Another addition planned for this fall will introduce an inner city equestrian program in conjunction with the New Orleans Police Mounted Patrol division. It will be one of the first programs of this kind in the country.
A representative from JoJo's Hope(see last August's newsletter for more details) will also be at the meeting to tell us about the different programs it offers at Elmwood Fitness Center in Harahan. This adapted aquatics program is dedicated to helping disabled, elderly, and underserved populations ranging in age from one to seventy.
Participants can benefit from improved muscle tone and coordination, strength, endurance, balance and mobility. Other benefits include increased mental and emotional health, improved cognitive skills, and enhanced self-esteem and self-confidence that result from improved social consciousness and friendships developed through fun and play in the water.
Come start off your summer with us to find out more about these beneficial programs. Hope to see you there!!

FROM THE EDITOR…

I recently attended the Empowerment Forum sponsored by Families Helping Families where I got to hear guest speaker Ric Crowley discuss a national movement toward using the principles of self-determination to dictate services provided to someone with disabilities. I was shocked to hear that Louisiana was finally reforming its waiver program. I was hopeful that this program could be in place for my child when he would need it. Yet, I couldn't help but wonder if it would ever happen.
The longer I listened, though, the more I was drawn into his vision. The reason was obvious-because his vision was also my vision and every parent's vision of what they want for any child. That is the opportunity to have the life he/she desires and the means by which to make it all happen. It was totally refreshing to hear someone telling me that they not only cared what my child wanted but had the program to make that come true for him. I was moved by stories of how people's lives were transformed by the mere fact that they were given the respect and the right every human being deserves to control his/her own destiny.
The New Opportunity Waiver (a proposed option under the current MR/DD waiver) is awaiting final approval and is indeed a totally different way of thinking for service providers moving them in the direction of providing consumer options rather than dictating available services. Our region is one of those targeted for a three-year pilot program. Such a phasing in of the program could start as early as August or September beginning with 50 recipients and expanding to at least 250 by the end of the three-year period. The program would allow self-advocates the control over the money given to them-to use or misuse as they will. It acknowledges the fact that for someone to become a responsible, functioning member of society, they must be given the opportunity to make mistakes and hopefully learn from those.
Surprising to some bureaucrats is the reality that this approach often saves money for the state because the wants and desires of self-advocates are often much simpler and cheaper to obtain than the long list of services the states were once required to provide. One such example Mr. Crowley provided was when a man was allowed to use his Medicaid funds to purchase a cow for $200. It was something he'd always wanted, which in itself made him happy, but in addition, working on the farm provided him a network of friendship and support that money could never buy. The system had spent thousands and thousands of dollars every year to develop this man's socialization, yet he did it alone for pennies on the dollar. (Such a money-saving feature could be a great selling point for the legislature)
The NOW waiver supports such an investment in people by taking the time to observe people's behaviors and listen better to what they want-not what others think is best for them. One of the great things about this program is that it seems to work for everyone who picks it regardless of functioning level. Experience has shown that many who had previously been labeled as non-compliant, aggressive, and violent were simply manifesting their frustration over the lack of control they had in a given situation. In the voice of one group of self-advocates, all they wanted was "to boldly go where everyone else has already been"-to be awarded those same rights the constitution bestows on all American citizens regardless of ability or disability.
As I left, I couldn't help but feel cautiously optimistic about the future. I realized that as the speaker had said, everyone must have "a fire in his belly" to "create the energy to move the system". As always, change will not occur without great effort and dedication by parents and self-advocates. Don't think, "That sounds great, but I won't let myself get excited until I see it in print and know it's going to happen." Get excited now and let that excitement be the impetus for change. If you feel strongly that the new NOW waiver is something you would like to see happen for your child or yourself, it's up to you to make it happen. Everyone has a busy life, but we must realize that this commitment is just as important as, if not more than, all those other things that consume our time.
I know I sound like a broken record, but it is so important for us to advocate for our children by lobbying the legislature. Though the program is likely to be approved, the system is at the mercy of the legislature for funding. Remember that this is a huge change we're asking them to make, so it is crucial that we impress upon them how important and necessary this change is. We must let them know that the recent 1.4 billion dollar cut in Medicaid funding is not acceptable and push for needed monies to be allocated to the NOW waiver. Our system in Louisiana is finally making a turn in the right direction, and it's up to us to be sure the roads are open.
Working alone, in isolation, it is easy to feel as though our efforts have no impact. The harsh reality is that, for the most part, people do not care about something if it does not directly affect them. Remember that legislators feel "safety in numbers"-the more constituents they hear from, the more courage they will have to make the right choices to help the disabled in our state. Together, working as an organization, we have the power to generate change, in this case, a change that can drastically improve our children's future. I hope everyone can find the courage and dedication within themselves to make the choice to act now and to continue to do whatever is necessary so that all people who have a disability can one day make their own choices and grow into the productive, happy adults we envision.

Ann Lafourcade

May 22, 2003. “Lions and Tigers and Bears, OH MY!” DSAGNO goes to the Zoo. Audubon Zoo, 5:30 p.m.-7:30 p.m. Join DSAGNO members and their children when we take a Twilight Treck through Audubon Zoo! Bring a picnic dinner and feast under the stars. For more information contact Pam Wiltz at 466-7176.

May 31, 2003. Summer Activities for Children when they’re Not in Camp. Rosedale Library, 4036 Jefferson Hwy., 10:30 a.m.-12:00 noon. Don’t know what to do with the kids all summer? Take this workshop and find great activities for the kids to do while home for summer vacation. Sponsored by FHF. Call 888-9111 to sign up.

June 13, 2003. General Membership Meeting, 7:00 p.m. Crane Rehab, 101 River Rd., Jefferson. A representative will be on hand to talk about Special Olympics and we’ll also have someone from JoJo’s Hope to talk about their swim program for disadvantaged and disabled. See Ann’s article in this issue to learn more.

June 19, 2003. SAVE THE DATE! Kathy Snow, author of “Disability is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities” to speak in the greater New Orleans area. Kathy Snow is the parent of a child with a disability and has been a public speaker and trainer on disability issues for 10 years. Sponsored by FHF of GNO and Jefferson Parish Human Services Authority. For more information, flyers will be available at the June General Membership meeting.

June 19-21, 2003. IDEA Partnerships 2nd National Summit on the Shared Implementation of IDEA '97. Crystal Gateway Marriott, Arlington, Virginia Designed to bring a full range of people into the discussion about students with disabilities. Discuss ways to develop a better understanding of law and evidence-based practices for implementing the law; strengthen relationships and understand each others' needs and priorities; address key issues related to supporting achievement for students with disabilities. For more information go to www.ideainfo.org.

July 11-13, 2003. NDSS National Conference. St. Louis, Missouri. For more information, go to www.ndss.org. Limited number of stipends may be available through Families Helping Families in your area or by contacting NDSS. Check with your local chapter of FHF for more information.

August 16, 2003. The Arc of Greater New Orleans Celebrates 50 Years of Community Service. Hibernia Bank Building, 313 Caroldelet Street, New Orleans, 7-10pm. Hors d’oeuvres, cocktails and memories. Music provided by “Gumbo.” Gormet delicacies from New Orleans Catering. Tickets re $50.00 per person; $40.00 for curent staff members of The Arc-GNO; $30.00 for current Arc participants. For more info contact Lee Gaffney at 897-0134.

September 13-14, 2003. Modern Perspectives in Down Syndrome. Hyatt Regency, New Orleans. More details as they become

Our March membership meeting began with the presentation of checks donated from the proceeds of the Buddy Walk. Members of the Buddy Walk committee donated $2,000 to both LSU's and Ochsner's early intervention programs while the ARC was given a check in the amount of $3,000. It is great to see the fruit of our work going to benefit some of our kids directly. Later, the general membership also voted to adopt the new bylaws.
Once all the business was taken care of, our guest speaker, Dr. Duane Superneau, the head of Ochsner's genetics department, took the floor. We all got a crash course in basic genetics finding out everything we'd ever wondered about why our kids have Down syndrome. He discussed some new trends in research and dispelled some old myths. Dr. Superneau is such a great source of information that people were literally following him out the door with questions. Thanks to Crane Rehab for accommodating us despite the late adjournment time. Since he is such a popular speaker, we hope to have Dr. Superneau back soon to talk on medical issues surrounding Down syndrome.

BIRTHDAYS
We join in celebrating the following birthdays in April and May
April:
Mae Belle Maurin 04/01/2001
D'wan Marshall 04/04/1975
Jarrod Lenfant 04/05/1991
Corey Plaisance 04/07/1991
Kolleen Lloyd 04/08/1986
Kevin Scallan 04/14/2001
Angelina Kirsch 04/21/2000
LouQuanda Henry 04/24/1998
Mallori Cranford 04/24/2001
Andrew Rucker 04/25/1992
Tracy Brumfield 04/25/1988
May:
Christine Lagarde 05/02/1989
Matthew Nauer 05/02/2002
Precious Fields 05/03/2001
Nathan Leathers 05/08/1998
Vincent Wagoner 05/09/1996
Katie Anne Prudhomme 05/22/2001
Stephen Slattery 05/23/1998
Christopher Arceneaux 05/25/1996
Arianna Lott 05/30/2001

As the majority of you know, DSAGNO held it’s first election on April 12th at the annual picnic. Conducting the election at the picnic worked very well because it gave more people the opportunity to vote. DSAGNO also took in approximately 35 new and renewal memberships. As most of you know, we do not send out individual reminders regarding membership renewals and we don’t cut off subscriptions to the newsletter once a membership expires. Our mission is to get information out to parents and we are dedicated to that. So we rely on everyone to voluntarily renew their memberships. I would like to thank everyone who renewed at the holiday party and at the picnic for their support of DSAGNO. Your membership dollars help us do things like stage events such as the picnic and the holiday party, give us the funds to purchase books for the library, expand outreach to new parents and pay for mailing costs for event flyers and the newsletter.
I would also like to congratulate to ALL the candidates. Your participation in the election shows your dedication to DSAGNO, its membership and children with Down syndrome and we thank you for participating. Whatever our members can contribute is valuable to DSAGNO and our children--whether it’s just a phone call to a new parent or running in an election. All the DSAGNO candidates showed a level of commitment to DSAGNO’s members that goes above and beyond.
Our first big election showed many good things about our organization--for example it showed that friendly competition won’t come between the strong friendships we’ve all formed. It also showed how much members wanted everyone who ran for office to have a chance to be involved. It was very heart warming as I tallied the votes to see that many people spread their votes out when people were running for more than one office so that more people had a chance to participate. We're a good group of people who care about each other; if we continue to do so, then as we grow and experience the inevitable growing pains in the future, we will only further strengthen friendships and make DSAGNO a leading community organization in more ways than one.
Here are the results of DSAGNO’s 2003 Election:

President: Paula LaCour
Vice-President: Marian Hauth
Treasurer: Rick Naiser
Recording Secretary: Laura Vagianos
Corresponding Secretary: Karen Scallan
Parliamentarian: Ginny Bordelon
Members-at-Large Olantha Scott
Kate Kenny/David Koscielniak
Laurie Guichard
Social/Special Events Pam Wiltz/Karen Gaddis
Membership/Welcome Vanessa Cashen
Finance/Funding/Donations Paula LaCour
Legislative Advocacy Richard Bordelon
Self-Advocacy Craig Blackburn
Strategic Planning Don Owen
Outreach Olantha Scott
Historian/Librarian Laura Vagianos
School Liaison Sue McCann
Inclusion Liaison Sue McCann
Public Relations/Media Karen Scallan
Buddy Walk Marian Hauth

Congratulations to the new Board!

I am honored to have been elected as President of DSAGNO for the next 2 years and am very excited about working with both familiar and new faces on the Board. I want to thank all past Board members and those continuing on the Board for their hard work and dedication. It is because of their efforts that DSAGNO has grown to have a board of 21 elected officers working for the betterment of life for all children with Down syndrome. I believe that if we continue to work together as we have, we will be able to secure many benefits for our children and others to follow. We can advocate for more opportunities for our children to live happy, healthy, fulfilling lives and to contribute to the community around them. And as we do this, we will also be setting wonderful examples for our children--examples of community service, perseverance, self-reliance and the self-esteem that comes with hard work.
I would also like to thank all of the parents who aren't on the Board, but who've volunteered to help at DSAGNO events such as Buddy Walk and those who've donated time and effort to make our events a success. Our membership is the backbone of DSAGNO and your help is appreciated.
And finally, if anyone is interested in working on a committee, please let that committee's chairperson know. We promise you will have a great time and benefit from the personal satisfaction knowing that you are helping all of our children

Louisiana’s Lion’s Camp
Free camp for children with mental or physical disabilities. For additional information, contact Patricia Melder at 1-800-348-6567 or email her atpmelde@lsuhsc.edu, or visit the camp web site at www.lionscamp.org.

Tillie’s Corner
By Tillie Plaisance
An Event I’ll Never Forget…

Anyone who knows my brother Corey would say he is the cutest if not the sweetest thing. You don’t have to know him personally, but if you just take a few moments of your time and talk to him, you can see that he doesn’t have a care in the world about what other people think and say. On the other hand, when it comes to me, I think I care more when people talk about my brother than when they talk about me. I don’t know why, but I feel the need to protect him. I think it’s because he doesn’t always know exactly what is going on around him; instead, I hear it. Not many people put my brother down. In fact, I’ve never really had to experience my brother being put down, until about two weeks ago.
Before I tell you the story, you should know one thing. Almost all of my friends, if not all of them, consider Corey to be family. So, when he is judged by his handicap, instead of the person he is, it doesn’t only affect me, it affects them and my family to.
About two weeks ago, I had an indoor ball game at my school. As usual, Corey and my parents were there. We thought it would be another game just like all the rest. We were wrong. This game was different. This team liked to torment us by making fun of the girls on the team. My brother loves to watch the games. When something exciting happens, he is our own cheerleading squad. During the game, when I was up to bat, I received a lecture from my brother, as usual. He always tells me, “Tillie, watch the ball and get a homerun!” For this game, his lecture worked. I hit a homerun and around the bases I ran. As I was running home, I could see my brother jumping up and down and screaming from the top of his lungs, “Go Tillie! Go Tillie!” While I was walking back to the team, I could hear the other team talking. Sure enough, when I turned around, it was the same girl that had been making fun of the team. As she was talking, the whole team heard. She said, “Look at that kid! He needs to shut up! He has so many problems!” When I heard her, I looked at my brother, who was still jumping up and down, and I wanted to cry. I became furious and I snapped back at her. My friends also became angry and after the game we had a talk with our coach, Mrs. Lindsay. The girl didn’t even have enough heart to apologize, but nothing else could be done. For a while I was upset. I didn’t know people could be so cruel, especially at such a young age. I just hope she realized what she did was wrong.
I also hope that if you see someone discriminating against someone with a disability that you don’t just stand back and watch. I hope you do something about it. Honestly, I don’t think you know how bad it hurts until it happens to you.

For many the thought of traveling with kids for extended periods (over an hour) can be an arduous task. Mark Twain said it best; “You don’t really know someone until you travel with them for an extended period”.
We traveled with Megan, our oldest daughter, half way around the world and it was easy. However, when it came to traveling with Hannah we didn’t know what to expect. Our first real journey was a flight to Houston. I had conjured up thoughts of air sickness, yelling and screaming the whole way to and from Houston. The only one yelling and screaming was I because my ears would not decompress upon landing in Houston. Hannah was fine. Our next big trip was a sixteen-hour drive to Milwaukee, Wisconsin. Sixteen hours in a car with adults can be a nightmare, but with two kids, aaaahhhh! They fooled me. It was a pleasure. We had the normal questions--“are we there yet?…when will we get there?…why are we going there?” But there were no major problems that would wreck your nerves.
Hannah has even flown to Disney World twice. She endured all Mickey Mouse could throw her way and wanted more! The first time we went to Disney World with Hannah we did not know about getting a special pass for disabled or “privileged” children. These passes were like a fast pass and allowed you to go through the fast line. We brought a large stroller and filled it with snacks, drinks, clothing, diapers, bubbles to blow and games to play while waiting in line. We also researched and found out which rides were the busiest --and not so busy at certain times and arranged our schedule to accommodate those times. The second time we went to Disney World, we knew about the passes, but opted not to use them. We got fast passes when we could and in December it was not that crowded, so the lines were not as long. Hannah is looking forward to returning to Disney World for her fifth birthday.
Now don’t think that our children are little meek angels, just traveling along as quiet as a church mouse. They are two kids with their own interests, likes and dislikes, and temperaments. However, as a parent you can make traveling a lot easier and fun if you realize and plan a few things ahead of time. For instance, books, videos, games, magna-doodles, coloring books will help make any trip easier. Also, packing snacks and drinks to enjoy while you travel makes for less stops except the obvious, potty stops. One thing I have noticed over the millions of miles I have driven, with and without kids, is that if you allow snacks and drinks to be enjoyed periodically, the potty stops are also you can enjoy a trip with your kids too. Remember, great times for fuel and stretching.
I enjoy traveling with my kids. I often think of Al Roker’s book, “Don’t Make Me Stop This Car,” (my father said that a lot) when planning for a trip. And I am sure that with a little planning, parenting (just like the US Navy slogan) is not just a job, it is an adventure!

From My Side
By Craig Blackburn
Reaching A Goal

For as long as I can remember, I had one major goal and that was to graduate with my class by earning a regular high school diploma. It was very hard, but I made it all the way. I knew I could do it and I had many other people who believed I could do it. I had to pass all the tests just like all my classmates and friends. When I was a senior I had to pass the GEE exam which stands for Graduate Exit Exam. It was hard and I had to take certain parts more than one time. Some parts, I passed on the first try.
I enjoyed my experience with my friends at school. I had many friends in each of my classes. Some of the classes that I took were English, Math, Science, History, and ROTC.
I was the manager for the football team for 4 years in high school. This helped me get to know many people and be a part of the school. I think that participating in all things helped my friends think I was not so different, but the same like them.
The day I graduated from high school was one of the happiest ever. I had family members come from all parts of the United States because they were so proud of me. I was proud of myself.
My parents always promised me that I could have a big party as a reward for graduating and I did. When I walked out from the graduation ceremony, I was the only student to have a limousine waiting to take me away to my party. I danced the whole night and my stepdad kept his promise to do the YMCA with me at the party. He doesn’t like to do the YMCA so this was special for me. I smiled the whole night. I will always remember it. I still look at my graduation tape when I crossed the stage and I know I worked so hard for my diploma. Everyone cheered for me and inside, I cheered too.

Recently, Craig Blackburn was hospitalized at East Jefferson General Hospital. This issue’s Inclusion News Spotlight features East Jefferson General Hospital and their doctors due to the outstanding consideration and respect shown Craig during his hospital stay. Read what Pat, Craig’s Mom, had to say about East Jefferson General Hospital:
From the onset, everyone from the doctor’s office to East Jefferson treated Craig as an independent adult. He signed for everything himself and when anyone relayed a message, they spoke directly to Craig. Craig asked the questions he felt he needed to be able to understand what was going to happen to him. He did a very good job of helping the professionals understand that he was capable of understanding as long as they put it in layman's language, which they did. A cardiologist, Dr. Jacobs, was called in for consultation and his interaction with Craig was wonderful. Craig asked to see the EKG and Dr. Jacobs accommodated Craig's request and went into detail to explain it. When the technician came in to take the echo doplar exam, Craig asked her to go through the details of what she would be doing. He acted as an adult and that is how he was treated.
When we went to get Craig's chest x-ray, the technician took him to the back and showed him the films on the computer. When we returned to Dr. Colfrey to have the staples removed, Dr. Colfrey returned to his office where I was waiting, but delayed discussing the details until Craig was present. I was in amazement.
I have nothing but praise for all the professionals that we met and the respect they showed to Craig. It was a wonderful display of how the treatment of individuals with Downs syndrome has come around. I am going to write a letter to EJ, but I did come across literature, also, that there is a department that deals with individuals with disabilities. I was impressed with that. I do think, however, that the first approach should be like the one taken with Craig, he is an individual first and secondly, he has Down syndrome. Every day brings new surprises. This one was pleasant.

Inclusion News Spotlight is a regular feature of DSAGNO News and highlights inclusion issues in our community. If you are aware of a business, organization or person who is working toward inclusion of the disabled; or if you are aware of an area of our community that could improve their inclusion efforts, contact Karen Scallan or Ann Lafourcade.

Our House
A Parents Perspective...
By Karen Scallan
“A Throne of His Own”

A while back, spurred on by motivational pep talks from Edith Michel, I went out and bought a potty chair for Kevin. And not just any potty chair mind you, one that plays music when little droplets hit the bucket, one that trumpets triumph of little poops! It’s a marvel. It can fit on our “big potty” or sit on it’s own on the floor. It came with it’s own book. I was thrilled. Surely this would motivate Kevin to be a potty prodigy.
At first, he loved it, but not to sit on. He loved to turn it upside down and tried to figure out how it worked. He thought it was a musical toy. Then we had a few lapses ourselves. Mom forgot to put him on the potty or ask if he had to go. We tried maybe once a day about 3 days a week. We weren’t getting anywhere.
But don’t let this make you think we didn’t hear trumpets. It started slowly, usually once in a while when we walked across the raised floor…trumpets sounding our entrance. Once Matt even set it off on purpose as a joke when he got up in the middle of the night. Then, the trumpets started sounding more frequently until one night, I thought we had ghosts. All night long I was awakened to trumpets heralding nothing. Matt “put to sleep” a little toy desk that Kevin had after it was doing the same thing…constant calls of “Let’s Play,” in the middle of the night were just too much. Just as my fears began to build that Matt might take matters into his own hands and kill the potty chair, Kevin asked to go to the potty!
“Mommy, pee pee, pot-eee.” I couldn’t believe it. Now Matt could see it was worthwhile, all those trumpets we’d heard all along would finally have a purpose. We took Kevin in, sat him down and waited. And waited. And waited. No trumpets. Nothing. Silence. Finally after 45 minutes (yes, 45 minutes of the potty book), I got the sense to pick him up and check and voila! He HAD gone. Just when we needed it most, Kevin’s new throne didn’t herald the little prizes he’d left--the batteries were dead. Since then, Kevin’s been going like a trooper. Sometimes telling Mommy or Daddy “potty” and sometimes us asking him, but we haven’t replaced those batteries. I guess he didn’t need trumpets to go after all. It appears that all the trumpets in the world can’t match the sight of Mommy doing her potty dance and singing the potty song after Kevin “goes.” I guess we’ll save on batteries.