March / April 2004
Page 1

IN THIS ISSUE:

Two Dentists for the Price of One! 1
From the Editor 2
Mark Your Calendars 3
Birthdays 4
Reaching Out to New Parents 4
Top Ten Tips for Advocates 5
Sesame Street Moments 5
Through The Grapevine 6
March Meeting Brings Advocates and ParentsTogether 6
From My Side 7
Our House, A Parent’s Perspective 8
United We Ride Initiative 8
Profiles: Evan “Superman” Cortozzo 9
New from Woodbine House 10
Spring Picnic is an Egg-ceptional Event! 10
LaCan Advocating for people with Disabilities 11
We Want YOU!! Volunteers Needed 11
Before You Retain a Lay Advocate 12
Families Helping Families13
NDSS Offers Advocacy Day13
Self-Advocate Connections: NDSS and FHF 13
The Making of an Advocate 14
Web Sites 14
Coming Soon! 14

When was the last time your dentist had a 2 for 1 sale? Probably never right? Well on May 21, 2004, you'll have an opportunity to talk to two pediatric dentists and pick their brains about your child's dental future--and the icing on the cake: it's free!
At DSAGNO's next general membership meeting, Dr. Marvin Cavallino and his daughter, Dr. Claudia Cavallino will speak about dental issues common to people with Down syndrome and disabilities in general. After their discussion, they will be happy to address your concerns about your child. So bring your questions and take advantage of this rare opportunity.
Many DSAGNO regulars will remember that Dr. Marvin Cavallino spoke to DSAGNO's general membership a few years ago. Dr. Cavallino has been treating children with disabilities in his practice for many years and currently sees approximately 30 children with Down syndrome, 10-15 with autism, several with cerebral palsy and many with heart disease in his practice.
Dr. Claudia Cavallino graduated from LSU's School of Dentistry in 2002 and will complete her residency in pediatric dentistry at LSU in June. Dr. Cavallino has all the up-to-the-minute, latest information on new techniques for treating children with disabilities and the challenges they present. She also holds a bachelor's degree in sociology.
So bring your questions, bring the kids, and join DSAGNO on May 21, 2004 at 7:00 p.m. at Crane Rehab. As always, Crane Rehab is generously providing therapy for the kids at $5.00 per child. If your child is participating in the therapy, please call DSAGNO at 846-6903. If you are able to bring small refreshments for the meeting, please contact Pam at 467-7176.
This is a great opportunity to learn more about dental care for your child. Everyone is welcome!!

FROM THE EDITOR
What Will it Take to Break Down Barriers?

A couple of weeks ago, I sat with another mom of a child with Down syndrome at the early intervention program our children attend. There are several moms that stay to watch their kids in the class, and the conversation is usually lively and centered on children. On this day, though, something happened which opened my eyes to just how entrenched the pre-conceived ideas we all have (myself included) about people with disabilities can be and to the reality of how much work still needs to be done in the area of disability advocacy.
Another moms observing this particular day told us her child, who has been considered one of the "typical" children in the classroom, was recently diagnosed with cerebral palsy. We were shocked. We couldn't believe it. He's so "normal." We couldn't find anything "wrong" with him. We both had this idea of what someone with cerebral palsy would look like or be capable of, and this child certainly didn't fit the picture we had. The child's mother explained that her child did, indeed, have it and pointed out the reasons. Only then could we see the ever-so-slight evidence of what we'd thought of as a significantly debilitating disability.
It occurred to me that we both reacted in much the same way others do when thinking of someone with Down syndrome. The vision many people still have is one of an individual who is severely incapacitated or childlike, maybe bedridden and unable to articulate his or her needs, unable to participate in community and/or physical activities, and certainly unable to make decisions for himself.
It was then that I realized how pervasive the stigmas of "disabilities" can be and how much work we have to do to change the thinking of everyone in our community in order to bring about change in our children's lives and the lives of those that follow them. I think this experience brought about a needed revelation for me to become a better advocate for Kevin. It dawned on me, that if I still make such uninformed presumptions despite my experiences with Kevin, no wonder others who have no such knowledge or first hand experience often do the same. It all goes back to the basic problem of ignorance about disabilities and the practical solution that knowledge and inclusion can create a more enlightened and caring society. It's just one more lesson learned that we can hopefully pass along to others as we change minds one at a time.

Karen Scallan

April 21, A Foundation for the Future: Bayou Land 8th Annual Conference for families of children with special needs, adults with disabilities, foster/adoptive parents, professionals. 8:00a.m.-5:00p.m. Houma-Terrebonne Civic Center, Houma, LA. For more info: 1-800-331-5570

April 24, 2004. From Early Steps to Elementary to Transition. Basic Special Education Rights provided under IDEA for children with special needs. 12:30p.m.-3:00p.m. East Bank Regional Library, 4747 W. Napoleon Avenue, Metairie, LA For more info: (504) 888-9111.

April 27, 2004. 504, It’s More Than Just An Area Code. Does your child learn differently? have health issues that effect their education? need assistance in school but doesn’t qualify for special ed services? Section 504 of the Rehabilitation Act might give your child the protection they need in school. 6:00pm-8:00pm, New Orleans East Regional Library, 5641 Read Blvd., New Orleans For more info: (504) 888-9111.

May 1, Special Education Rights. Basic special education rights under IDEA. Learn about identification, evaluation and services available to students eligible to receive special ed services. 10:00am-12:00noon. North Kenner Library, 630 West Esplanade, Kenner. For more info: (504) 888-9111.

May 4, It’s Not Just a Meeting. See April 20th above. 6:30pm-8:30pm, Jean Lafitte Auditorium, 4953 City Park Drive, Lafitte

May 4, Fair Housing Rights and Issues. Who decides what you need and how? 6:00pm-8:00pm, FHF-GNO, 4323 Division St., Suite 108, Metairie. For more info: (504) 888-9111.

May 5, Special Education Rights. See May 1 above. 10:00am-12:00 noon, Westwego Library. 635 4th Street, Westwego.

May 6, Special Education Rights. See May 1 above. 6:00pm-8:00pm, St. Bernard Parish Gov. Complex, 8201 W. Judge Perez Hwy. Chalmette.

May 8, Planning (IEP & ITP). Focuses on how the IEP and ITP process works, how to get what your child needs and your rights during the process. 10:00 a.m.-12:00 noon, North Kenner Library, 630 West Esplanade, Kenner. For more info: (504) 888-9111.

May 10, Planning (IEP & ITP). See May 8 above. 6:00pm-8:00pm, St. Bernard Parish Gov. Complex, 8201 W. Judge Perez Hwy. Chalmette.

May 10, Planning (IEP & ITP). See May 8 above. Westwego Library, 635 4th Street, Westwego, LA.

May 13, Special Education Rights. See May 1 above. 4:30pm-6:30pm, Belle Chasse Library, 8442 Hwy. 23, Belle Chasse.

May 13, How to Make Special Education Work. Speakers: Jim and Charlene Comstock Galagan. Catered Lunch and door prizes. Free. Lake Charles Civic Ctr., 900 Lakeshore Drive, Lake Charles, LA For more info/registration: 1-800-894-6558

May 18, Planning (IEP & ITP). See May 8 above. 10-00am-12:00 noon. Gentilly Library, 3000 Foy St., New Orleans.

May 18, Potty Training & Behavioral Consulting for Individuals with Disabilities. Mike Hillhouse, M.Ed., will speak with participants after presentation if needed. 8:30 a.m.-2:30 p.m., Esperanza’s Restaurant, 13899 River Road, Luling. Free with lunch and door prizes. For info: 800-330-5570 or 985-879-2001

May 20, Planning (IEP & ITP). See May 8 above. 4:30pm-6:30pm Belle Chasse Library, 8442 Hwy. 23, Belle Chasse.

July 24-27 2004 National Youth Leadership Network Summit. Theme: LEARNING, LIVING, LEADING: YOUTH WITH DISABILITIES CONTINUING THE LEGACY. Participants learn from national disability leaders, public officials and other young leaders with disabilities. Conference goal includes helping prepare next generation of disability leaders and identifying ways to improve policies and supports for young people with disabilities. Washington DC. For more info: http://www.ucp.org/ucp_channeldoc.cfm/1/12/69/69-69/3028

July 22-24 NDSS Annual Conference: “Empowerment, Reaching, Achieving.” Washington DC. Learn strategies to become an effective advocate, meet legislative representatives, share best practices on health care, employment, community living, learn from world-renowned experts on a variety of topics, discover new products, programs and services, up-to-date info on education and research, network with more than 1,000 participants, find resources for babies, children, adolescents and adults with Down syndrome.
For more info:
http://www.ndss.org/content.cfm?fuseaction=NwsEvtEvtConfNC
or call 1-800-221-4602

August 20-22, NDSC Annual Conference. Minneapolis, Minnesota. Theme: Boundless Horizons. Provides ideas and resources, nationally renowned speakers. Network with other families and self-advocates. Speakers include Libby Kumin, self-determination experts, research experts, Handwriting without Tears, Inc. And much more. For more info: www.ndsccenter.org or call 1-800-232-NDSC.

Looking for a good cause to receive all those long beads you catch during Mardi Gras? DSAGNO is looking for beads to distribute at the NDSS convention again this year. You may recall that the Mardi Gras beads and Magic Seasoning Blends give-aways were a big hit at the 2003 convention in St. Louis. The beads were given out to those attending breakfast on the first day of the convention. Word traveled fast and after that, everyone wanted to know "where'd ya get those beads?" We had quite a crowd at the DSAGNO booth where convention goers were given more beads, DSAGNO print materials and a pitch to have NDSS hold a convention in New Orleans.

This year DSAGNO is reiterating last year's pitch and hopes to firm up some plans to have NDSS come to New Orleans. So help DSAGNO create a buzz…save your long beads and donate them to DSAGNO. If you have beads to donate, or any other ideas or donations for DSAGNO to bring to the convention, email or call Paula LaCour at klacour1@bellsouth.net or (504) 846-6903.

BIRTHDAYS

Join us in celebrating the
following birthdays!!!

MARCH
Lizzy Bordelon
Neal Enright
Hannah Hotard
Rebecca Melancon
Josie Naiser
Matthew Rolfes
Taylor Rush

APRIL
Tracy Brunfield
Angelina Kirsch
Kevin Scallan

Do you know of a family in need of support and information about Down syndrome, special education issues, medical issues and much more?
Contact our Outreach Chair:
Kate Kenny at (504) 846-6903

The Outreach Committee is launching a new drive to reach new parents in our area. Olantha Scott, who was elected Outreach Committee Chairperson in April of 2003, recently resigned and Kate Kenny, member-at-large, was appointed as interim Outreach Chair. Kate brings to the committee a wealth of knowledge as a teacher, former and current board member, and the mother of Kyle, now 13 yrs old. Kate held her first meeting on March 31st to set up a plan to reach parents of children with Down syndrome, particularly new parents.
With the Board’s input on brochure changes complete, the Outreach committee began its quest for printing donations. An initial run of 500 brochures has been secured, and the committee is looking for other avenues for printing services.
New parent packages will also be available soon and the committee had reviewed a multitude of materials for possible inclusion in the package, such as DSAGNO brochure and information along with an application for membership, “Welcome to Holland,” Early Steps (formerly ChildNet) information, and web sites of interest. Brochures from such organizations as LaLeche League, NDSS, NDSC, Woodbine House, LaChip, and Families Helping Families as well as information about many other pertinent groups and programs will provide parents with the foundation they need to get started on their journey of advocacy.
The committee is also developing a checklist of important "To Do" items which will be in the package. Hopefully this list will save parents a lot of time and regret so that they won't have to say later, "I wish I'd known about this before…" Just as important as all this sharing of knowledge, though, is the realization that families often do feel overwhelmed by the huge amount of information presented them and the large task which looms ahead. For this reason Kate hopes to include a small gift to remind parents how important it is to relax and take it one step at a time.
The committee has divided up the Greater New Orleans area into districts and has district point people assigned to each area to assist in distribution of these materials. Kate said she expects that after printing is complete, the brochures will be distributed to area hospitals as soon as possible.
The St. Tammany Parish group will also host its own satellite meetings for parents. While still a part of DSAGNO, St. Tammany Parish members will be able to take advantage of increased support in their area without having to travel as far. Information on St. Tammany parish meetings will be made available for those interested.
For more information regarding these or any other outreach issues or if you know of a business that can assist the Outreach committee with printing costs, please do not hesitate to call Kate at (504) 846-6903.

Whether your advocacy work is with your child's doctors and teachers or in the halls of Congress!

1. Be an advocate not an adversary.

2. Know your audience. Everyone has a unique perspective and you need to understand the perspective of the person you are dealing with.

3. Give this person credit and praise for every great idea (even if it started out as yours).

4. Be ready, willing and able to provide as much information as is necessary to follow through with the idea or request.

5. Put important requests in writing and provide a timeline.

6. Allow a reasonable time for requests to be processed, then follow up with phone calls and letters.

7. Bring a friend, family member or fellow advocate to appointments and meetings when you need someone to take notes, bear witness or just be there for emotional support.

8. Before a meeting or appointment, prepare a list of the points you need to make and the questions you need to ask. Also, plan your responses to any questions or comments that you can anticipate. It's easier to stay calm if you are not caught off guard.

9. If you get what you want (which won't always happen even if you are a great advocate) express gratitude. This is true even if the person should have done it without your intervention. Everyone responds to appreciation.

10. Remember that advocacy is something we all do every day. Sometimes the issues are national, sometimes they are personal, but they are always important because they are about our kids.

"Add one more sure thing to the old saw about death and taxes; No matter how much school enrollment grows, the number of special education students grows even faster.
The number of students with special needs has nearly doubled since 1977 and now accounts for about 12 percent of public school enrollment. If the pace continues for another decade, 16 percent of the nation's schoolchildren will have special needs."

Rethinking Special Education, Scott Stephens and Ebony Reed, The Plain Dealer, www.cleveland.com

Emily Kingsley ("Welcome to Holland"), a longtime member of the NDSC and a former member of our elected national Board of Directors, sends the following message:

In honor of it's 35th season, Sesame Street will open with a 'Sesame Street Moment.' These are 30-second reminiscences of 'my favorite Sesame Street segment' or 'what Sesame Street meant to me.' Many of these are being done by celebrities (Cher, Julianne Moore, many others).

The producers wanted to do one 'Sesame Street Moment' on the contribution the show has made to awareness of disability issues, inclusion, acceptance and appreciation of individuals with physical and developmental disabilities. They invited Jason Kingsley (Emily's son, and another former member of the NDSC's national Board) to be the spokesperson for this area and he taped a wonderful 'Sesame Street Moment' which is being attached to the beginning of Show 4072. The air dates, so far, for the first few showings of 4072 are April 26, June 1 and July 7.

If you wish to send a message of appreciation to Sesame Street for increasing awareness both now, and in the past, their address is as follows: Producers of Sesame Street, Sesame Workshop, 1 Lincoln Plaza, New York, NY 10023; or, PBS, 1320 Braddock Place, Alexandria, VA 22314. Your response makes future visibility more likely.

For Special Ed Advocates:

These two books from Wrightslaw provide comprehensive guides to surviving the Special Education maze. Learn how to effectively advocate for your child’s rights to a “free and appropriate education” under IDEA.

Wrightslaw: From Emotions to Advocacy-The Special Education Survival Guide

A practical "survival guide" designed to teach you how to advocate for children with disabilities. Learn about obstacles, common reasons for parent-school conflict, and how to manage a crisis. Learn advocacy skills - how to organize, plan, present, and prepare. Learn how to organize the child's file, write SMART IEP goals and objectives, and measure progress objectively. Learn to create paper trails, write persuasive letters, and maintain control in school meetings. Includes worksheets, forms, sample letters; appendices; bibliography; index. To order go to www.wrightslaw.com

Wrightslaw: Special Education Law

Designed to answer questions about special education law, Wrightslaw: Special Education Law includes the full text of the Individuals with Disabilities Act, Section 504 of the Rehabilitation Act, FERPA, implementing regulations, and special education decisions by the U. S. Supreme Court. To order go to www.wrightslaw.com

Occupational Therapy Tip:
Get either Playdoh or special clay used in occupational therapy exercises. Hide small objects in the clay and have your child search through them for the object inside. This helps with coordination and hand strengthening. Note: for small children, be aware of possible choking hazards if object is extremely small. (Heather Harris, Occupational Therapist, Crane Rehab)

Book Recommendation on Nutrition and Eating Advice:
I highly recommend "Super Baby Food" by Ruth Yaron. Lots of information and answers to the tough questions about eating, diet, and nutrition. Book includes great recipes and information on making your own baby food. (Karen Scallan, Mom)

Resource for Early Intervention and Therapy-Related Items and Toys:
Need another chewy tube for grandma's house? Want to get another scooper bowl to use at home like the one at school. You can find that and more in the Beyond Play catalog. Beyond Play many of the tools your therapist uses and much more. There is also furniture, toys, occupational therapy tools, oral motor tools, puzzles, sequencing tools, bibs, feeding supplies and much more. Request a catalog on line at www.beyondplay.com, call 1-877-428-1244 or write to Beyond Play, 1442-A Walnut Street #52, Berkeley, CA 94709.

Pre-school Software:
I have been singing the praises of the All-in-One preschool software for years. The product is out of print, but a supplier in England apparently has a number of them and is putting them on Ebay with an initial bid price of $1.82. If you have an opportunity to purchase this pre-school software, I recommend it. I bought it for the auditory sequencing value—changing the levels increases the number of objects the child has to remember in order.
Also check out www.larken.com. I love their Living Letters and Living Numbers. They allow a free download to sample some of the product. You can get the Living Numbers free if you want to just put it on your hard drive. (Mindy Lee, Mom)

From My Side
By Craig Blackburn

I am very lucky to be selected for Partners in Policymaking (PIP). Other members of DSAGNO have attended PIP and encouraged me to apply. I had heard about PIP for many years because my Mom was in the first graduating class and she told me how much it helped her.
I did apply and I was selected for the class that started in January 2004. The session is an overnight stay for one weekend each month in Baton Rouge and you really work hard. You get so much information that you are really tired by the time you come home. It is really good and my classmates are really nice people from all over LA. I interviewed the coordinator of PIP, Ms. Sharyn Scheyd and this is what I learned.
Ms. Sharyn works very hard and has been the coordinator of PIP for five years. Her duties include: sending out applications, working on the committee to review the applications so that there is a good mixture of individuals with disabilities, parents and other advocates. She also books room reservations and sets up meals, selects and invites speakers and presenters and makes their travel arrangements and makes the handouts for the sessions.
PIP started in Minnesota and almost all states have PIP. The Louisiana chapter of PIP is sponsored by the Developmental Disability Council (DDC) and it is a program to help people with disabilities and other advocates learn the legislative process so that they can relate to and understand policies and make a difference.
Applicants can call the DDC 1-800-922-DIAL and ask for an application or you can go on line to the DDC website. Applications have to be submitted by the last day of September each year.
One of the benefits of PIP, Ms. Sharyn feels is the change from start to finish in self-confidence of the participants. They learn the issues of individuals with disabilities, expand their knowledge through listening to the national experts who present each month at the session, they learn what practices occur around the country, what they can do for themselves and it is a real growth process.
I asked Ms. Sharyn what skills are needed to participate in PIP and she said that you need to be someone who wants to make a difference not just for yourself but for everyone. A participant should want to be involved to make a better place for individuals with disabilities to live. They need to use what they have learned. They need to have passion and commitment. PIP looks for different types of individuals from all over the state. If you don't get chosen for one session it might be because there are so many that have applied from your area. Just re-apply.

PIP has been in Louisiana for fourteen years and was one of the first states after Minnesota.
Some PIP success stories are people who take back to their areas what they have learned and do something with it. Some past members have started inclusion in their area, some have joined and started advocacy groups, some have joined the legislative process and some have become national speakers.
I asked Ms. Sharyn which session she thought was the most beneficial and she said it was really up to each person. She did feel the mock legislative session was one of the best to her because it gave members a chance to see where and how they could make a difference in the laws that are being made.
Each time I attend a session, I come home very excited. I want to tell others about what I have learned and our homework gives us a chance to practice what we have learned. I think PIP would be good for everyone and hope you all apply.

Get legislative updates on Call-In Days, IDEA Reauthorization, NCLB and other current legislation on these web sites:

NDSS Advocacy Center
www.ndss.org
Offers legislation and news, media guide, elected officials guide, advocacy guide and guide for self-advocates, info on the Institute for Special Education Leadership and much more.

The Arc’s Action Center
http://capwiz.com/thearc/home/
Offers Action Alerts, guide to locating your national, state and local representatives, issues and legislation information, election and candidate information, media guides. Sign up for the action “e” list for up-to-the-minute email notifications of important legislation and “call-in” days. Also provides sample letters to block and copy to your representatives.

The Department of Transportation, in collaboration with the Departments of Health and Human Services, Labor and Education, are launching United We Ride, a new five-part initiative to address the ongoing transportation coordination issues that are occurring in many communities and states. The initiative is geared towards providing transportation services for the elderly, persons with disabilities, persons with lower incomes, the young, and individuals that do not have access to private transportation.
While 62 Federal programs fund transportation services, significant barriers to adequate transportation still exist. The United We Ride initiative will strive to break down the barriers between existing transportation programs and set the stage for local partnerships to generate additional solutions and improve the quality of services.
The United We Ride initiative will include:
• A Framework for action;
• State leadership awards;
• A national leadership forum on human service
transportation coordination;
• State coordination grants; and
• A Help Along the Way technical assistance program.

For more information on the initiative, go to the Coordinating Council on Access & Mobility Website at:
www.fta.dot.gov/CCAM/www/index.html

MEMBERSHIP DRIVE NOTICE!!!!

Have you renewed your membership yet? Memberships expired on December 31st of 2003. It's not too late to renew your membership. Your dues help DSAGNO defer print and mailing costs. For your membership, you'll receive 6 regular issues of DSAGNO News, the Special Buddy Walk issue, and so much more. Membership is only $15.00 so don't forget to renew today.

Fill out the membership application available in the DSAGNO Website CLICK HERE
and send it in today.

DSAGNO-Membership Drive
P.O. Box 55204
Metairie, Louisiana 70055-5204
For more information call (504) 846-6903.

Our House
A Parents Perspective...
By Kirby LaCour

Doctor’s offices; how can you keep your child feeling comfortable? Well, at Our House, we have found a way that works pretty well.
After trying many forms of explanation, pleading and promising disciplinary actions, we found ways to make visits to the doctor more comforting to our children. Since humans learn by modeling behavior, we have done 2 things to make our kids not as afraid of the doctor.
First , we have a toy doctor’s kit that the kids love to play with. They enjoy being the doctor and the patient and we take turns role-playing with the kids. As a patient, we keep our responses to the child’s doctor role with respect and do not make a big deal and start yelling ouch if the child says, “I have to give you a shot.” When it is our turn to be the doctor, we try to imitate a doctor’s mannerisms and explain what we are doing while we give them their check up. Occasionally, we go as far as pretending to take x-rays and putting on Bandaids. This role-playing has a positive influence that a doctor visit is not to be feared, but accepted as a necessary action to make them feel better if and when they are sick.
Second, I take the kids with me to my doctor simple things like a general check up, seeing the ENT and the chiropractor. I have found that my reactions when I am examined by my doctor helps them with their doctors. Also, I definitely do not get flustered when I get a shot or have blood drawn. I stay calm, talk to the kids and explain what is happening. Now, for some this may not be an option and that’s fine. You may have your own ways of dealing with doctor visits with your kids. However, a good toy doctor’s kit can be a great teacher and a lot of fun! It works at Our House....got to go now, Doctor Hannah is calling me.
Take care and have fun,
Kirby.

Profiles...
Evan “Superman” Cortozzo
By Wendy Cortozzo

"And now, the 2nd Place winner of New Sarpy Kindergarten's 'Young Authors' Contest in the fiction category, for his story titled, "The Dog," Evan Cortozzo," said the Principal. The room exploded with cheers as our son walked proudly up to the front of the room and leaned over as the Principal placed a silver medal around his neck. "Evan has also won 1st Place at the district level and will continue on to the state level competition for his work," she proudly told the audience. I was trying hard to focus my camera to take his picture, but it was really my eyes that were unable to focus because of the tears of joy welling up in them. I looked over at my husband Mark and I think he was having the same problem with the video camera.
When I look back, I still can't believe our life right now. I think back to 6 ½ years ago in that hospital bed. I remember seeing the look on her face as my doctor held Even up for us to see. "What? What's the matter?," I asked in a panicked voice. Trying not to upset me, she calmly said, "I think he may have Down syndrome." "Down what!" I asked. "What is that!?" I remember just blurting out "Will he know us?" Then so many questions just flooded my delirious head. Mark and I just held each other tight, crying, and even though we were both scared to death, telling each other, "It's okay, it's okay, we're going to be alright."
After test results confirmed Evan did have Trisomy 21, the doctor told us it was time to test him for a heart condition. "Oh my God, not health problems too!" I thought. That very second, I stopped and pleaded with God, "We'll do anything God, please! Having Down syndrome is enough; please don't let him have heart problems too! Just let him be healthy, the rest we can handle. The rest is nothing. He's our little baby and he is so precious to us. Just let him live and be healthy." We were so lucky. God answered our prayers and I know that's when he instilled in us the strength and a sense of peace we desperately needed.
That evening, I remember holding my beautiful little boy in my arms as Mark and I looked into those big brown eyes and promised him we were going to give him the best life possible. I wanted so desperately for someone to walk into that hospital room with a crystal ball and show us a glimpse of our family in the future. Someone to tell us everything really was going to be okay.
Today, at 6 ½ years old Evan is a happy, healthy little boy. He is in a full-inclusion class all day, Monday through Friday and is doing awesome! He rides the bus to and from school every day and thinks this is just the "COOLEST."
As far as school goes, he does his homework (the same work assigned to the rest of the class), every night with our help. He can count to 30, knows his addition table 1 + 1 up to 1 + 25, matches things, is learning to spell, identifies the beginning, middle and end of a story, and writes his name. At home, when he decides he wants to play on the computer, he'll turn it on, grab the mouse and click his way to the game he wants to play.

I Can, Can You?
Marjorie W. Pifzer, M.Ed.
Babies and toddlers with Down syndrome, like all young children, want to discover their world and take on new experiences. I CAN, CAN YOU? is a delightful board book full of babies and toddlers with Down syndrome going about the business of their lives. Presented in crisp, uncluttered, full-color photographs, these children swim, take a bottle, share, eat spaghetti, laugh, play in the park, and more…looking adorable while doing it! $10.95 isbn# 1-890627-57-7 2004, 16 pages, color photographs, Ages birth to 4

This year's annual picnic was a huge success. The kids all went home and to bed early exhausted from all the fun. First they did their bunny imitations jumping in the space walk. Once the "all aboard" call was given, they rode the train over and over and over again. The excitement of riding the rail seemed to have taken over many. But they made sure to get off in time for the arrival of the Easter bunny (Craig Blackburn), so they could gather as many eggs as possible at the Easter egg hunt.
Certainly, the kids were not the only ones who enjoyed themselves. Everyone hung out at the buffet table indulging in the delicious selection offered and chatting with friends both new and old. Such events are a much-needed outlet for parents giving us more time to talk and share our experiences than the few minutes left over after general meetings.
Special thanks to Lakeview Fine Foods which donated the delicious chicken and to the social committee for putting together a great party to assure a good time for all.

LaCAN is a statewide grassroots network of individuals and families who have worked together since 1988 advocating for a system that supports individuals to live in their own homes rather than having to move to a facility to receive needed services. Specifically, they have advocated for implementation of Louisiana's Community and Family Support System Plan.
Regional LaCAN teams include parents, individuals with disabilities and parents. These members are notified by telephone trees to contact state agency officials, legislators or the Governor when necessary.
LaCAN provides information and support to individuals wishing to effectively advocate for the expansion and improvement of community and family support services for people with disabilities and their families through email updates, regional workshops, regional team leaders, and personal contact.
As a LaCAN member, you are part of an important movement to change Louisiana's system. Since its beginning in 1988, LaCAN has taken a stand for community integration and advocated for individualized community and family support services.
This stand and advocacy for it remains necessary to reform Louisiana's institutionally-biased system. The current system sustains long waiting lists for home and community-based waiver services while forcing children and adults to move into state, or private facilities, to receive needed services. The current system supports the separation of families and segregation of individuals with disabilities from the community.
"The disability field has, over the past three decades, learned to separate 'level of care' from real estate," wrote Lorraine Sheehan, President, The Arc of the U.S., in a recent newspaper article. However, in Louisiana's disability system the two are still largely linked.
Why are community and family supports important and necessary for an individual's well-being and why is LaCAN's advocacy critical?
I've been cleaning out files this New Year and came across an old issue of The Prompter newsletter and found what I consider a very good answer to that question. This article was published in 1991 when La.'s Community and Family Support System was just beginning implementation. The thoughts shared remain very relevant today.

FAMILIES: Our Most Fragile Resource
A person with a disability does not exist in a vacuum. He is first and foremost a part of a family. His first experience of what it means to be human, to love and be loved, to have his needs attended to, to hope and dream, will be shaped by the dynamics of that family.

This is not something that any family who has a member with a disability takes for granted. It was not so long ago that a child born with a disability was separated from her family, her relatives, her community, even society at large. She was relegated to an institution where medical specialists and strangers shaped the world in which she lived, made all the decisions about her life.
Families can be resilient, strong and caring. But they are not self-sufficient. Sometimes the effort to weave a person with challenging needs into the fabric of the family can leave that family exhausted, burnt-out, with little resources left to function at all. Yet their job does not end there. They must make the effort to reach out into the larger community, which may be fearful, apprehensive, and unwelcoming.
A family's experience will hinge upon many things: their attitude, the attitude of their community, and the attitude reflected by the public policy in their state and their nation. If everyone's attitude reflects optimism, caring and inclusion, then the job of that family is made easier. The extra challenges that come with challenging needs may be borne.
In Louisiana, that scenario is changing. We must not be complacent, however. Difficult times make for hard decisions. Resources are scarce. Families and individuals must continue to make their stories heard. We must shed light upon our struggles, for our struggles are not individuals ones.
Each individual and family is unique with needs changing over time, but those needs are shared by hundreds across the state and the nation. What happens to one affects thousands of others. We cannot afford to keep silent about what we need. The lives of individuals and our families depend upon it.

"Get into politics as if your life depended on it. Because it does." - Justin Dart
©2004 LaCAN

You can sign up for LaCan newsletters at LaCAN
http://www.lacanadvocates.org/. If you'd like an application to joint LaCan, call the DSAGNO office at (504) 846-6903 To join the LaCAN Team in your region, call 1-8

Volunteers Needed!!!
The Buddy Walk Committee is starting it’s volunteer contact list. If you have a special talent to lend to the event, we’d love to hear from you. The Committee is also seeking volunteers for the following: Donation requests, errand running, planning and organizing, registration assistance, t-shirt distribution, site set-up the day before and morning of, site cleanup and take down after the event, food servers, and much much more.
If you are able to help out in any way, please call the DSAGNO office at (504) 846-6903.

Before You Retain a Lay Advocate
by Jennifer L. Bollero, Esq.
As Reprinted from the From Emotions to Advocacy web site, www.feta.com

The decision to hire an advocate is unique to each case. Most parents negotiate successfully for their children without the services of a professional advocate.

Nevertheless, if a parent decides they could do a more effective job of negotiating for their child with help from a third party, I assembled guidelines to help evaluate the persons they are interviewing for
the job. In addition to the following suggestions, trust your instincts!

Properly Trained in Special Education Law
To date there is no regulatory framework to assess the competency for a lay, non-attorney advocate in special education. There is no uniform test or certification for these advocates, and they differ widely in their capabilities and experience.

Thus, a smart parent consumer will verify that these advocates have taken formal training in the rules and regulations of special education, via workshops, university programs, or other training.

Experienced in Special Education Matters
Parents should ask lay advocates for a summary of their practical experience in special education matters.
• How many IEP meetings have they attended?
• What sort of cases have they handled in the past, and with what results?
• Which school districts have they encountered?
• When do they call in an attorney?
It is essential that every advocate be able to answer this last question clearly. Every IEP dispute can become legally complex quickly. Good lay advocates have attorneys whom they can recommend (and hopefully with whom they have worked before) to a client if necessary.

All lay advocates should be clear in their own mind when their job has transformed from one of accompanying a parent through the predictable maze of special education to actually giving legal advice about what to do next. The latter is, by law, the province of the attorney. A good lay advocate will be very careful about making an actual legal judgment or recommendation to a client without first checking with an attorney.

Professional in Demeanor
Lay advocates who represent parents often come to the job, as do special education attorneys, because they have children with special needs.

Attorneys and lay advocates who are themselves parents of special needs children need to separate their own experiences from those of their clients. By that, I mean they must keep foremost in their minds the child at hand, not their own child. This is especially true if the experience the advocate had with his or her own child was negative.
In my role as a mediator I have seen lay advocates who are as professional as attorneys. I have also seen many who are not. An unprofessional advocate will do more harm than good.

Well Supported at the Office
Like attorneys, lay advocates should have reliable communication with their clients by phone and email. They should also give regular status reports to their clients and be able to manage the research and meeting demands of the cases.

Clients should feel that the lay advocate gave them sufficient time and attention, and explained the proceedings clearly. Although lay advocates do not have a recognized legal privilege, they should keep all confidences and should not discuss the case in any place where they could be overheard.

Sensitive to the Needs of the Child at Hand
The lay advocate must be able to reconcile the remedy to the needs of the child at hand. That is, the advocate must have a firm grasp of the distinguishing facts of the case as opposed to the facts of other, similar cases the advocate may have handled.
Parents should believe that the advocate has tailored the remedy to the unique needs of their child, and not just attempted a remedy that is typical for children with a similar disability, or even another client with a similar disability.

Sensitive to the Need of the Client to Make the Final Decision
Like an attorney, the advocate must offer options to the client with which the client can live. Similarly, the advocate must accept the client's decision with regard to the many options available, and not interject too much the advocate's own preference for one remedy or course of action over another.

About the Author
Jennifer Bollero is an attorney in private practice in St. Charles, Illinois, where she lives with her husband and two children, Amanda (who has autism) and Ben (who is not disabled). Her practice focuses on the needs of families with special needs children, especially those who need help securing appropriate educational interventions for those children. Her experience includes commercial litigation and trial experience, mediation, arbitration and some general practice. Ms. Bollero graduated with a Bachelor of Arts from Northwestern University in 1985 and her Juris Doctor from Loyola University of Chicago Law School of Law in 1988. She has been admitted to the State Bar of Illinois and the Federal Bar for the Northern District of Illinois since 1988. She externed for the Hon. Judge Aspen and for the American Civil Liberties Union.

Family Advocates through
Families Helping Families
By Karen Scallan

Who among us has not sought out the counsel of friends that have already blazed the same trails we now stand on? Well, Families Helping Families (FHF) is a very organized version of that same networking idea. FHF consists of families who, "through our own experiences, are committed to reaching out to other families who have members with special needs and self-advocates. The term "special needs" includes physical, mental, emotional, behavioral and/or academic issues." (From FHF's own web site.)
FHF basically offers education and support to advocates and self-advocates. Well, you might say, they can't help me, I'm not an advocate. But if you're reading this article, you have someone in your life that has either Down syndrome or another disability. And, if you are a parent of that person and you're reading this article, you ARE an advocate. Each time you sit at an IEP meeting, talk to a teacher, write a letter, tell someone about your child, you are advocating for them.
FHF offers the education and support we all need to be effective advocates because honestly, there's no one person that can know everything about this special education maze that we all must go through. Think about it, it's in the best interest of the school system if you agree with everything, but how do you know when you're being "guided" in a direction that's not in your child's best interest? You do that by educating yourself. Once you know what you and your child have a right to, you can then determine if you're getting a bad deal and what to do about it.
FHF offers a number of programs to help. Through Project PROMPT, FHF provides educational laws, rights, and advocacy workshops and training as well as direct assistance. STAR (Support and Training to Access Rights) is FHF-Louisiana's Supported Employment Program which offers Support and Training to Access Rights for individuals with disabilities age 14 or older. The FHF Inclusive Education Family Project is a direct assistance and training project to help achieve fully inclusive options in schools and community for people with special needs. FHF also has a Parent to Parent Support System that matches parents with trained mentor parents for one on one support. The Sibshops workshops provide activities for Siblings ages 8-13 of children with disabilities. In all of the FHF regions except Region 5, FHF has a "Children Special Health Services Parent Liaison. And, last, but not least, FHF sponsors Louisiana Citizens for Action Now (LaCAN) which you can read more about in this issue. Not every FHF Region participates in every program listed, but FHF of Greater New Orleans generally does participate in all of these.
Did you know that among all the other great things FHF does, they have a tremendous lending library also. Choose from thousands of video and book titles. You can view the list at http://www.fhfgno.org/library/index.php. If you need guidance, IEP assistance, are interested in inclusion or any of the programs listed above, contact Families Helping Families of Greater New Orleans, Inc., Family Resource Center, 4323 Division St., Ste. 110, Metairie, LA 70002-3179, (504) 888-9111, 1-800-766-7736 (toll free).

If you are interested in advocacy issues, you won't want to miss NDSS's pre-conference day. Previously, NDSS has provided a pre-conference date for affiliates with affiliate training on such things as marketing, membership issues and much more.
But this year the NDSS conference is in Washington D.C. and what an opportunity! There is a considerable amount of new and revised legislation on disability issues going on today. So NDSS has opted for an Advocacy Day at the 2004 conference.
On Thursday, July 22, "Parents, family members, affiliate leaders and professionals are invited to learn about legislative issues and strategies for becoming an effective advocate, then practice those skills during pre-scheduled meetings with legislative representatives. A parallel track for teens and adults with Down syndrome will also be offered, so they can acquire tools for self-advocacy and speak with members of Congress. The program will run from 8:45 AM to 5:00 PM. A separate registration fee of $65 ($50 for self-advocates) includes breakfast, lunch, Congressional Reception, transportation to Capitol Hill and all meeting materials. The number of participants is limited, so be sure to register early! You can register on line at www.ndss.org.

Self-Advocates “Learn, Play, Connect”
at Club NDSS.org

Club NDSS.org provides self-advocates with tools they need to know to advocate for themselves. You can learn what it means to be a self-advocate, what self-determination means, what it takes to be a leader, how to connect to congress and much more. Read stories from other self-advocates about what they are doing in their community and find out more about important issues like IDEA.
Club NDSS offers all this and much more so next time you’re on line, click on www.ndss.org.

DID YOU KNOW.....

Families Helping Families has a self-advocacy group and offers educational workshops for self-advocates?

For more information call Families Helping Families of Greater New Orleans at
888-9111.

Special Ed Advocacy
www.wrightslaw.com/info/advo.index.htm