March / April 2003
Page 1
IN THIS ISSUE:
March General Membership Meeting p1
FROM THE EDITOR p2
MARK YOUR CALENDARS! p3
BIRTHDAYS p3
January Meeting Re-cap p3
Therapeutic Options p4
Through the Grapevine p6
Tillie’s Corner p6
From My Side p7
Our House p8
Profiles p9
Upcoming Conferences p11, 13
Websites Of Interest p13,14		   MARCH MEETING:
YOU WON'T WANT TO MISS THIS ONE!

There will be much to do at our next General Membership meeting on Friday, March 14th at 7:00 p.m. at Crane Rehab (101 River Road, Suite 112).
First of all, checks will be presented to Families Helping Families, LSUHDC Children's Fund, the ARC, and Ochsner donated from the proceeds of the Buddy Walk. It is an opportunity to celebrate the success of the Buddy Walk and to feel good about "making things happen" for ourselves and others.
Also at the meeting, members will be voting on the new bylaws of the association, and nominations for the official elections will be taken from the floor. (See p. 12 for more information about offices and committee chair positions). For those members who will not be able to attend the spring picnic to vote, there will be a form available to vote proxy for the election. Remember, you must be a paid member in order to vote in the upcoming election. For your convenience, there will be a table set up at the meeting for payment of annual dues. Applications for membership are included on the last page of the newsletter and will also be available at the meeting and soon on the website.
Dr. Duane Superneau, head of Ochsner Genetics Department, will speak at the meeting about understanding Down syndrome from a medical perspective and any related issues that members may bring up. Come and have your questions answered by a professional. It promises to be an informative and interesting forum.
Page 2

From The Editor

Change is inevitable, so you must constantly adjust to the demands of your life. I recently experienced the change of going back to work after staying at home for six years. It has been a challenging time for our family, but especially for me. My life has been so busy that I recently needed to take a step back and look at the big picture to see how this change is affecting my family. I was able to see a faint light at the end of the tunnel and have come to the conclusion that if we (I) can survive the stress of this first year, our situation will improve. Then life will be a piece of cake, comparatively.
Such an adjustment is similar to the one I had to make when Andrew was born. We had had two other brilliant boys. I'd had the audacity to believe that I had anything to do with that. When Andrew came along, he had something I couldn't "fix". Yet I told myself if I tried all the therapies and did everything I was supposed to, it would be fixed-OK he had this disability, but we (I) was going to work so hard, and he was going to be some kind of Down syndrome prodigy-doing better than all the rest (talk about DENIAL). I always felt like I was riding on a rollercoaster. Andrew would make some progress, however small, and I was ready for him to take off going where no DS child had gone before. As time went on, I found that Andrew's successes were few and far between making those dips on this ride hard to stomach.
Looking back now, I think the real issue of acceptance was not of Andrew's disability but of my own limitations. I remember writing a profile article for the newsletter when Andrew was two. I didn't want to write it because in all of the other articles the kids were so high achieving, and Andrew was so far behind. As I wrote that article, there was much soul searching and reexamination of things I had put off thinking about. I had never realized before how much of my identity was tied in with my children. If they were successful, I was, and if not, I was a failure. So with Andrew I felt like I was a failure because my original plan wasn't working. Writing that article helped me get my thoughts straight and realize that he couldn't be nor did he need to be "fixed". I was the one who had to "fix" my attitude and perspective. If I could just accept him the way he is, then I would be able to share in his triumphs rather than be disappointed in his failures. Even as I wrote these ideas down, I think I did not yet fully believe them. Such a perspective has been long in evolving and probably still is.
Once again, it seems that I am facing that same admission that I am not Supermom nor do I have Superkids. Caught up in the whirlwind of work, I sometimes feel that I barely get to talk to my kids, much less have quality time with them. I have had to realize that just because I don't spend every minute doing something for my kids that doesn't make me a bad mom. Both they and I appreciate the time I do get to spend with them even more so now. Yes, I miss much of the fun we used to have, but having experienced both at-home and at-work parenting, I know neither is easy. There wasn't all that much free time when I was at home anyway. I now wonder what I did with all that time. Certainly, one thing is clear to me now more than ever: The reason our family has been able to adjust to the changes life has presented us with is because we've been able to keep our focus on love. Andrew has helped us (me) to embrace imperfection, his and mine. I no longer measure my success by how much I or my children can accomplish. Instead, I look at how much I love and am loved by others, especially my family. Yes, Andrew was only one change in our lives, but he has brought about so many other important changes for the better.

Ann Lafourcade
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MARK YOUR CALENDARS!


BOARD MEETING - March 6th
The next board meeting will be Thursday, March 6th at Kate Kenny's house. Board members should call Kate for directions at 885-1188.

GENERAL MEMBERSHIP MEETING - March 14th
The next general membership meeting will be Friday, March 14th, 7:00 p.m. at Crane Rehab. (See p. 1 for details)

SPRING PICNIC/BOARD ELECTIONS - April 12th
Our annual spring picnic will be held on Saturday April 12 from 11-3 at Kenner Shelter #1, 1801 Williams Blvd. We'll have an Easter egg hunt and spacewalk for the kids, lots of good food and company, and hopefully, good weather. Be sure to pay your dues and read the special issue introducing the candidates so that you can vote while you're there. Call Laurie Guichard at (985)764-0704 to let her know what you'll be bringing.

DUSK AT THE ZOO - May 22nd
On Thursday, May 22, DSAGNO is invited to Dusk at the Zoo. This special guided tour promises to be fun. Check the next issue of the newsletter for more details.

BIRTHDAYS

We join in celebrating the following birthdays in February and March:

Megan Dodson...............................................................2-16-95
Sarah Gibson..................................................................2-14-88
Victoria Leonard.............................................................2-03-93
Celeste Rebstock...........................................................2-25-00
Eric Ballay......................................................................3-20-94
Elizabeth Bordelon.........................................................3-02-97
Alexander Boudreaux.....................................................3-12-97
Jonathan Habeney.........................................................3-09-88
Rebecca Melancon........................................................3-01-93
Leah Melton...................................................................3-04-90
Josephine Naiser...........................................................3-04-01
Taylor Rush...................................................................3-29-01
John Streva....................................................................3-30-96
Evan Wodehouse..........................................................3-12-89

   JANUARY MEETING:

LEARNING WAS MUSIC TO OUR EARS

The guest speakers at our January meeting had the kids boppin', hippin', and hoppin'. There were wiggling worms, flapping birds and hopping bunnies in the room-we hope Crane Rehab didn't mind the animals! Our kids were having so much fun that they didn't even realize they were learning.
Music makes everything fun-even therapy. It was clear to see that the kids were thoroughly engaged and on task when music therapists, Elizabeth Knoth, Alana Dellatan, and Kari Podboy, gave everyone a free preview of a therapy session. In that short, five-minute session our kids worked on speech, social, motor, and cognitive skills. We thank Elizabeth, Kari and Alana for their informative talk and demonstration. To read more about the benefits of music therapy see Music Therapy article on p. 4 and Through the Grapevine comments on p. 6.
Also at the last meeting, we talked about the changes our organization is experiencing. Marian Hauth discussed how the success of the Buddy Walk has led to the realization that there are many people out in the community who are willing to help us make a difference for our kids and others. Mike Rapier talked about his designs for the newsletter and website which have given us such a professional new look. Everyone seemed excited about the evolution of our organization, and we hope all will share their ideas and vision for DSAGNO with us. Together, we can accomplish so much.
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Therapeutic Options

Music Therapy: Can It Help Your Child?
By Ann Lafourcade

Most people have heard about the "Mozart effect" and how listening to classical music has been proven to increase intelligence. Many may routinely play the tapes for their baby feeling they are helping him take his first step toward success. Others may think it's just a bunch of malarky despite what the studies say. Understanding a baby's brain development can help us to better understand how such a simple, easy thing like listening to music can improve cognitive function. It may also lead us to a more informed conclusion about using music therapy to help developmentally disabled kids like ours.
When a baby is born(this also applies to a baby with Down syndrome), his brain has billions of neurons, but the connections between cells have not yet been made. Any sensory experiences, including sound and music, can help create the "neuron network" needed to transmit impulses to the brain. In particular, studies have shown that music, along with other creative skills like math and chess, involve "extremely precise firing patterns in neurons". The link between music and the part of the brain responsible for mathematical and spatial reasoning has been proven in study after study. Well, obviously, any child with Down syndrome isn't going to be an Einstein. So what benefits can music, in particular music therapy, have for someone who is developmentally delayed?
From the reading I've done, it seems that the main advantage to music therapy over any other type is the unique environment it provides. It is common knowledge that music has a calming effect. There is no right or wrong response to music since it is creative. The music, then, frees children so that they don't have to spend the majority of their energy trying to adapt, and they can, therefore, focus more on the skill being worked on in therapy. It only makes sense that children would perform better in the more relaxed environment provided by a music therapist. Indeed, many of the articles I read indicated that music therapists are somehow able to "see a child in a new light" and more easily see potential that other therapists cannot. Such an accepting environment can promote success and self esteem in any child.
Another advantage of music is that it helps those with developmental disabilities to "organize". Someone who may have trouble organizing a concept abstractly may be more successful through music which has its own organization of rhythm and predictable sounds. In addition, since it takes both hemispheres of the brain to process music, it can help to stimulate cognitive functioning and so be used for remediation of speech and language skills.
Many parents and educators involved in music therapy testify that they have seen improvement in children's social skills, attention spans, turn-taking and listening skills, as well as help in learning basic academic facts. Communication and motor skill can also be greatly enhanced by music therapy. One parent even attested to the fact that music helped to reduce her child's sensitivity to sound. Certainly, no one therapy can fix everything, but what the American Music Therapy Association, Inc. does believe is that "music therapy can be the therapy that reinforces all other therapies."
Although it seems that Music Therapy is new, it has been around since the 18th century. A music therapist must go through much schooling in music, science, and human development and must complete an extensive training program; it is not just someone who is a music teacher or can play music. Be sure to look for a board certified professional. A bit of practical information I learned that may be useful is that Music Therapy is considered a related service under IDEA and can therefore be used toward completing IFSP or IEP goals.
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New Gold Laser Tonsillectomy Procedure Leaves Kids Smiling Sooner
Introduction by Kirby LaCour

Well, let me begin by saying that if you ever wanted to see big tonsils, my daughter Hannah had them. She seemed content with them, functioned fairly well vocally, and eating was not a major problem. However, we were worried about the continued choking problems she did have. It was also believed that the size of the tonsils were obstructing breathing at night and causing some sleep apnea.
After another consult with our ENT, she felt the tonsils should be removed. A new type of operation was discussed that might make her down time from the surgery less painful and provide for a quicker recovery. Since, Hannah’s sister had her tonsils out the year before with conventional surgery and it was not fun for her, we opted to try the new Gold Laser Surgical Technique.
I must say that Hannah’s recovery was unbelievable! Five hours post-op she wanted not the jello, ice cream and ice sticks, but chips! Yes, potato chips. She wanted real food. Not the puree’, squashed, minced, mashed anything. While the doctor decided to keep her overnight since the surgical technique was new, it was felt she could have gone home that afternoon. Not only was her appetite good, she was not in any pain or discomfort. After soft foods at home for the next few days, we could not restrain her desire for real food any longer, and eased her back into her pre-operative diet.
Our experience with the Gold Laser Surgery was very pleasing, not only for Hannah, but for the family as well. We understand this technique is not for everyone since all tonsils are different, but it is worth looking into. Not only for the child, but for those caring for them.


Use of the Gold Laser for Tonsillectomy
Evelyn A. Kluka, M.D.
January 27, 2003

There are numerous methods of performing a tonsillectomy. This statement would imply that there is no perfect method. The surgical procedure involves removing the tonsils from their surrounding muscular beds and stopping any bleeding that the surgery creates. The difficulty lies in minimizing the amount of pain that the patient might experience with swallowing while waiting for the back of the throat to heal.

 

The pain is unavoidable and can be quite severe. Healing time usually occurs over a seven to ten day period. Most patients receive a prescription pain medication but still require a special diet during the healing period. Liquids and soft foods are usually recommended to minimize the swallowing difficulty. Still, unfortunately some patients have significant difficulty and may experience dehydration secondary to poor oral intake.
The time honored techniques of tonsil removal include dissection with a scalpel, scissors, or snare then drying any bleeding with sutures or electrocautery. Some surgeons advocate removal of the tonsils with the electrocautery unit in order to achieve less bleeding and subsequently less time in the operating room. The disadvantage of this method involves the depth of penetration of heat, which results in pain, tissue sloughing, and possibility of delayed postoperative bleeding.
As medical technology improves, innovative ways to take out the tonsils are being sought. Within the last couple of years, some surgeons are advocating a partial tonsillectomy—purposely leaving tonsillar tissue behind in order to leave a layer of tonsil covering the muscle, thereby minimizing the patient’s postoperative pain. Long-term effects for these patients are uncertain. The technique is recommended only for patients with large tonsils that cause breathing difficulty and is not recommended for those patients who have a history of frequent, recurrent tonsil infections. The concern lies in the tonsil tissue that is left behind. The tonsil has the capacity to re-grow and possibly become infected.
The carbon dioxide laser is a tool that is utilized but that has proven not to be beneficial in removal of the tonsils. When used, another tool was usually necessary to stop the bleeding and the patients did not have proven less pain. Special precautions were necessary also to prevent fire in the airway due to scatter of the laser.
The gold laser is a contact laser and is my current tool of choice for removal of tonsils. It is of different wavelength than the carbon dioxide laser and works only where the surgeon touches the tissue. The control and safety are therefore improved. The depth of penetration into tissue is .3 to .5 mm, minimizing thermal damage to surrounding healthy tissue. Postoperative pain and swelling should be reduced. Because the laser cuts and seals small blood vessels at the same time, blood loss and surgical time are reduced as well.
I have been using this technique routinely since July 2002, and have been pleased with the results. Again, no technique is perfect, but I believe that this tool has achieved better control of pain, bleeding, and healing than other methods I have tried.
Page 6

Tillie’s Corner
By Tillie Plaisance
Their Way or No Way

As the year has gone by I’ve watched each child grow in their own way. If you have a son or daughter with Down syndrome, you probably have realized in most situations it’s their way or no way unless you know how to reason with them. I don’t know about your family, but with my brother there’s usually no reasoning. Most of the time he throws a fit until my parents or I cave in and give him what he wants, or like other times he pitches a fit until he realizes there’s no way out.
Sometimes you have to just let them throw their fits. They have to learn that it can’t always be their way. They need to know that we, their family and friends, won’t always be there to reason with them. They need to learn with the help of others, but also on their own. They have to realize they have to be the one to give in sometimes.

   Through the Grapevine

If you have a contribution, tip, or question for Through the Grapevine, send it to Karen Scallan or Ann Lafourcade.
The Music therapy Experience

January's meeting on music therapy had me thinking back to almost two years ago when a group of friends and I went through a series of group sessions with a music therapist. Even though Andrew at two years old was not as verbal as he is now, I can remember some real improvement stemming from those sessions. He has always loved music and singing, but hard as I would try, he was usually content to just watch me sing and sign the songs.(I guess I must be really entertaining!) He participated much more in the therapy sessions we went to, and even more exciting to me, he actually remembered the signs and songs months after we stopped going.
Now that he is older, I can see how music in our everyday life and in school has helped his speech evolve. At home, it began with him watching Barney and imitating the motions to the songs, and later, singing the last words of each line in the Veggie Tales song. Now, at school, his new teacher has a list of songs she has introduced to them, and not only is he singing along with them and dancing, but his everyday frequency of speech in the classroom has increased greatly. This has much to do with how much he adores his new teacher, I know, but I also think that because music is such a natural motivator for him, it has helped him to overcome his tendencies toward inertia and shyness at school. This recent success at school has us considering an investment in music therapy sessions for him. At the very least, we will try to use music as a catalyst for everyday learning. It will give him the chance to do something he really loves and us an easy way to help further his development.
Ann Lafourcade

Page 7

From My Side. .
By Craig Blackburn
Working at Winn Dixie

In January 1999, I started working at Winn Dixie in Luling. I joined the Winn Dixie team and I am a courtesy clerk. My job is to bag groceries and help customers to their cars.
The second manager I worked for was Mark Matherne. I liked him the best and he was my boss and my friend. He found another job with Coke almost a year ago and moved to Lafayette. I miss working with him, but he comes into the store sometimes when he is visiting in town.
My duties at Winn Dixie are to bag groceries, help customers, stocking and just about anything I am asked to do, Our motto is: FIRST CLASS SERVICE which means friendly, initiate, respond, serve, say thanks and the customer always comes first.
Holidays are very busy times and the store stays open extra hours to service the customers. We have MANDATORY meetings that you must attend. At these meetings, the manager tells us what new programs are coming up and explains how they work. Most of the time, the Winn Dixie team members earn rewards for these programs. I earned a TV during our last campaign.
Our work week is from Thursday through Wednesday. I work part-time and now I work about 30 hours per week. I am lucky because my schedule is during the week from 7am until 1pm and I have off on Saturday and Sunday.
I enjoy working at Winn Dixie because we are a family and have fun together. I work anywhere I am asked, but I enjoy helping customers the most. At Christmas I get to play Santa Claus and the kids have their pictures taken with me. Every year, my friends at Winn Dixie make me a photo book with my Santa pictures with the kids.
I have a Secret Pal because of Winn Dixie. The courtesy clerks are not allowed to take tips from customers. I started receiving cards in the mail at home from someone I don't know, but who signs the cards as my Secret Pal. The notes say that I am the best and hardest worker at Winn Dixie and that since I can't receive tips at work, she wants to reward me with a cash gift. Today I received a Valentine's card with $20. I receive cards and money from my Secret Pal for every special occasion. I am very lucky.
I thought I would like to be an overnight stock person and I tried it. I liked it, but I was unhappy because I did not get to see my Winn Dixie friends and the customers. I talked it over with my manager and asked to be put back as a courtesy clerk or day stocker and be on the day shift. That is what I do now.

My goal is to work full time every day in different departments and I want to be a head manager for a department. I will continue to work very hard.

See you next month….Craig

    

Inclusion News Spotlight

Welcome to a new feature of the newsletter-Inclusion News Spotlight--a bulletin board and spotlight for inclusion events, issues and topics. This month we will focus on Jefferson Parish schools, but we hope to also include vocational, recreational and social inclusion issues in the future. For those interested in inclusion issues, we hope you find this spotlight informative.

Inclusion Spotlight: Jefferson Parish Schools

For parents who seek an inclusive educational setting, things got harder in Jefferson Parish last year. Recent budget cuts by the JP School Board (the lion's share of which were in the area of special education) affected a large number of our members. Not sure what you can do to promote inclusion and fight future cuts? Meet JP School Board members-they need a parent's perspective on the importance of a quality education for special needs children. On December 4th, the JP School Board met and elected officers for the 2003 school year. Those officers are: President--from the 8th District, Judy Colgan; and, Vice President--from the 5th District, Karen Barnes. Gene Katsanis was elected to lead the superintendent search committee.
Budget cuts were also responsible for the change in time for regular JP School Board meetings. Meetings are now held at 10a.m. instead of 6p.m., but if you are able, attend school board meetings as often as possible. Call 349-7803 to let them know if you wish to speak and what topic you want to discuss. (Refer to Ann Lafourcade's Letter From the Editor in the November issue of the DSAGNO News for tips on how to speak in front of the Board.) You can also get to know your principal, teachers, and assistants. Make yourselves as accessible as possible.
There is a group of parents working on grants to enhance inclusion in JP schools. For more information, contact Doriana Vicedomini at 467-4096. This group wrote a grant last year that was not awarded by the state, however the foundation is there and can be modified for future use. They are currently working with JP schools to implement some of the programs from that grant on a pilot basis, beginning in January 2003.

If you have information you'd like to see included in this column, please contact the editors.

WrightsLaw Tip
For articles and resources on discipline, visit the Wrightslaw site: www.wrightslaw.com/. FETA, p. 134.
Review and analyze your child's test data before IEP meetings. FETA, p. 145.
If the school asks you to sign a consent or permission form, get a copy for your records. Your copy establishes what you agreed to. FETA, p. 202.
Page 8
Self-Determination Workshop
By Marian Hauth

I recently attended the Southern Immersion Self-Determination Workshop held in Baton Rouge in January. This conference focused on allowing individuals with disabilities and/or their families to direct their own lives instead of being directed by service providers. There are five principles of Self-Determination: freedom, authority, support, responsibility, and confirmation.
Self-determination is different than choice. Choice means the individual chooses among options defined by a system of providers. Self-determination allows the individual (with chosen friends, family and allies) to determine the range of choices and then pick the ones that fit within their individual budget. A great example of this is one of the residents in a group home. When asked if she preferred Cheerios over Frosted Flakes, she chose Frosted Flakes. When asked what she wanted for breakfast, she said she hated cereal and liked eggs.
There's a great difference between quality of services and quality of life. The common foundations of quality of life are: having something meaningful to do (What do you do?) having friends; being loved; being welcome into the community; and having control over your own life.
The Robert Wood Johnson Foundation funded a national impact assessment to study the quality of life as opposed to the quality of services as a person with a disability moved from being directed by a service provider to person-centered self-determination. Outcomes were studied over a 4-year period in 9 states with over 8000 participants. The results were impressive. Person-centered planning increased for the majority, power shifted consistently to the individual, and quality of life, as judged by participants, family members, and service providers was enhanced in 14 out of 14 areas studied. On the other hand, there was no data to support that an increase in the quality of services (accreditation, licensing, IEP's) improves the quality of life of individuals with disabilities.
The self-determination movement is growing day-by-day and the keys to any successful self-determination movement are bold goals; long-term change; leadership; resources from the community; culture and spirit; education, planning and strategic thinking.
I believe that the DSAGNO can be a leader in our community for change in the direction of self-determination for people with disabilities. The changes occurring in our organization now are spearheading this movement. I hope everyone can jump on board to sustain the momentum created so we can create the independent fulfilling lives for all of our children

  

Our House
A Parents Perspective...
By Karen Scallan
Postcards from the Czech Republic

I'm sure most of you are familiar with the "Welcome to Holland" piece written by a mom to describe what it was like to have a child with Down syndrome. She equated her situation with preparing all her life for a trip to Italy only to find out the plane landed in Holland. Well, on the Friday before Martin Luther King Day, Kevin's doctor told us Kevin tested positive for Celiac Disease. With those few words, suddenly I was hearing our tour guide say our stay in Holland was being interrupted and we now had to go somewhere even more foreign to us ...Matt said the Czech Republic.
Celiac is a disease of the colon and means your system cannot tolerate gluten, which is in just about everything except fruit and veggies as I soon found out. Kevin's doctor scheduled us to see the new pediatric gastroenterologist at Ochsner on Tuesday, so we had about 4 days to mull this over ourselves.
The news threw us for a loop, and again, all those initial feelings of not knowing how to care for a child with Down syndrome came rushing back. I had no idea how to care for a child with Celiac disease. And this would be yet another way he was "different" from the other kids at school too. It meant no birthday cake at parties, no ice cream cones, packing special food everywhere we go, finding health food stores on vacation and cooking almost everything ourselves. But mostly, I want Kevin to have as much of a normal life as I can, and this was one more thing to grieve for him in others.
Then I really started thinking about it and what was I grieving? That Kevin couldn't go to McDonald's and eat chicken nuggets like the other kids? Yeah, that would be tough for him in some respects, but it certainly would be better for him.
So I got on line and got busy. I went to Whole Foods on Magazine Street and found out that they have a complete book at the front desk with any kind of diet you could want...gluten free, sugar free, low-fat. In it they list by category all the foods they carry that are guaranteed gluten free. That made things easier. I found books on the internet and ordered them, emailed companies and asked questions about their foods. I even emailed Santa Fe's Chamber of Commerce to find out where the closest health food store was to the casita we rented for our vacation in February and downloaded McDonald's gluten-free menu.
As I became more informed, I realized this was just another strange place that would become more familiar as time goes on. One other thing it did make me do was sympathize with parents who have children with multiple disabilities–some difficult to identify--and who are trying to "commute" between two different and sparsely populated countries and still keep it together at home and at work. I realized how familiar Holland had become and how grateful I was that we had had only "Holland" to deal with.
As it turns out, the gastroenterologist explained that of the 4 blood tests Kevin had had, only 2 were positive for Celiac–the 2 inaccurate ones. The other 2 were negative, so after an endoscopy and a biopsy, it turns out Kevin doesn't have Celiac and yes, I'm relieved. But the experience was eye opening and allowed me to see how parents living in multiple "countries" must feel.
Page 9

Profiles...
Marissa Lauren McCann
by Marissa, with a little help from Sue and Kevin McCann


HI! My name is Marissa Lauren McCann. I was born on February 15, 2000, so by the time you read this, I'll be singing with Baby Bop and Barney, "Look at me, me, me! I am three, three, three!"
Before I came here to be with my parents and my friends, my grandfather PaPa in Heaven taught me some wonderful things that I would need to know. One of the special things he told me was that "when you smile, share your joy and watch how it makes other people smile. When you love, love as strongly as you can, and see how others embrace you. And when you work hard and do your best at whatever you're doing, know that I and all your family are watching you, hugging you, and smiling because we're all so proud of you." Ever since then, I've been trying to fill my days smiling, blowing kisses, and working hard to be the best I can be.
During my first year with my parents, I had lots of days and weeks of not feeling well. Going to doctors, emergency rooms, and hospitals seemed to be the way things were supposed to go. Eventually, though, I got to the point where we started seeing less and less of the doctors, more and more of people my own age, and I was able to start working on real challenges like sitting up, drinking from a cup, feeding myself with a spoon….last year I started walking, climbing stairs, and playing in my back yard. Now, thanks to all the hard work, I'm working, learning, playing, and growing right alongside other kids my age at school and at play.
It's great being me! I get to play and learn so much, and with the new friends I've made at school I look forward to each day. Being included in the regular 2-year old class at Ecole Classique, I have to work hard to do new things, but it's great knowing that my Pa Pa is smiling along with my teachers and friends! I have learned about 150 signs, which come in handy when I can't remember a word for something I want to say. I enjoy time with the therapists who are working with me to develop my communication and motor skills (you may have met two of my therapists at the Buddy Walk last October, Ms. Denise and her therapy-dog, my friend Bullet). After school and all weekend long, I spend lots of special time with Mommy and Daddy (some of my favorite things to do are dancing with Mommy, riding piggyback with Daddy, and pushing my dollie's stroller while taking her for walks in our neighborhood). I get to talk with my Grandpa and Grammy in Houston on the telephone and sometimes go visit Grandma MaMac uptown (she lives near the Audubon Zoo, which is one of my favorite places to go).
When my New Orleans family gets together, we can all barely fit in one house; but, I love giving and getting hugs and kisses from all my uncles and aunts and cousins. On Christmas Eve, Santa Claus came to my godfather's house while we were there, and I couldn't believe it when Santa told me, "I love you!" in sign language! I was so excited!
Now that Mardi Gras is on the way, I have to get back to climbing, swinging and playing on the play-set in my back yard again…gotta be strong so I can catch good things while I ride on Daddy's shoulders at the parades. I've been working on getting stronger with my therapists indoors during the cold weeks, but it's great to go back outside again!
Gotta go, now. Many, many things to do, smiles to share, kisses to blow…..much work to be done to keep trying to be the best. When you see me, you'll probably know me…I might even blow you a kiss! I hope you'll smile and wave back to me….I think I'll never have enough new friends!

Page 10
Puberty in Children with Down Syndrome
Editor's Note: This article is reprinted from Connections, the newsletter of Down Syndrome of Louisville, Inc. The reference list is taken from Disability Solutions, a publication of the Enoch-Gelbard Foundation and is part of an extensive, 2-part article on Sexuality Education in the Disability Solutions Newsletter. Copies of the 2-part, 33-page article are available online at www.disabilitysolutions.org. If you do not have computer access, please contact one of the editors to make other arrangements.

When a child with Down syndrome begins to mature, it can be scary for both the child and the parent. An excellent resource to turn to regarding this is Disability Solutions. Disability Solutions is the free publication of The Enoch-Gelbard Foundation. It's mission is: "To provide in a widely accessible manner, free of charge, information that is useful, sensitive, and current to everyone concerned with developmental disabilities: parents, families, self-advocates, and professionals." The goal is to bring current research, medical information, educational strategies, and practical suggestions to readers in language that is easily understood. Hopefully, information presented in articles will be "ready to use" or require few adaptations to be useful immediately.
To obtain your free subscription to Disability Solutions, send your name, address, zip and telephone number to Disability Solutions, 9220 SW Barbur Blvd. #119-179, Portland,OR 97219-5428 FAX: 503-246-3869 Phone: 503-244-7662.
For easy reference to all back issues, you may log on to their website at http://www.disabilitysolutions.org/news.htm. Their last 2 issues deal entirely with Sexuality Education. The following resources were taken from Volume 4, Issue 6. The list has been edited for space.
Sexuality Resources for Teaching and Learning
By: Terri Couwenhoven, MS
She is the mother of two daughters, one of whom has Down syndrome. She is an AASECT certified sexuality education consultant and Clinic Coordinator for the Down Syndrome Clinic of Wisconsin. You can contact her by e-mail: tcouwen@execpc.com or by US Mail: TC Services, 209 N. Spring Street, Port Washington, WI 53074.


  
The following is a list of my favorite resources for teaching about sexuality. Most of these can be purchased through any major bookstore or at amazon.com. If not, the source where it can be purchased from is listed after the description.

FOUNDATIONAL SEXUALITY CONCEPTS
Just Because I Am: A Child's Book About Affirmation by Lauren Murphy Payne. Published by Free Spirit Publishing, 1994. ISBN: 0915793601, $8.95 (child's book), $13.95 (instructor book). A beautiful yet simple book that encourages appreciation of uniqueness and includes empowering messages about the body, feelings, boundary awareness, touch, and feeling safe. Comes with a Leader's Guide (useful for parents as well) supplemental activities that affirm the concepts above. Both the Guide and the children's book can be purchased through Free Spirit Publishing at www.freespirit.com for about $30.00
Today I feel Silly & Other Moods That Make My Day by Jamie Lee Curtis. Published by Harpercollins Juvenile Bookes, 1998. ISBN: 0060245603. $13.95. A humorous book about feelings. A fun spin diagram in the back allows children to change the look of the face based on feelings (sad, happy, excited, cranky, angry).
Face Your Feelings, Published by Child's Work/Child's Play. www.childswork.com 1-800-962-1141. A book and card deck set that help children understand the importance of expressing and understanding feelings. The book and card deck show 52 pictures of children, teens, adults and seniors expressing 12 basic feelings. Designed for ages 4 and up.
What's the Big Secret: Talking About Sex with Girls and Boys by Marc Brown and Laurie Krasny Brown, Ed. D. Published by Little Brown and Company, 2000. ISBN: 0316101834, $5.95. A nice, easy-to-read storybook for young children that addresses how boys and girls are different (come to find out the only way they are different is physically). The book addresses societal rules related to talking, looking, touching and being touched and reproduction.

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PUBERTY RESOURCES FOR PRE-ADOLESCENTS
Changes in You by Peggy Siegel. Published by Family Life Education Associates, P.O. Box 7466, Richmond, VA 23221. 804/262-0531. $10.45. The only book written specifically for girls and boys with cognitive disabilities, this book uses beautiful illustrations and straightforward language to explain the physical, emotional and social changes of puberty. Separate book for boys and girls.
HYGIENE AND GROOMING
First Impressions Can Make a Difference. James Stanfield Publishing Company www.stanfield.com or call for catalog 1-800-421-6543. Approximately $189 for each video series. A four-module video series that addresses hygiene, grooming, dress and attitude using humor and exaggeration. Modules are sold separately.
PARENT GUIDES AND RESOURCES
Shared Feelings: A Parents Guide to Sexuality Education for Children, Adolescents, and Adults Who Have a Mental Handicap by Diane Maksym. Published by Rohert Inst Kinsman, Inc., 1996. ISBN: 092012918, $14.00. A wonderful guide to help parents of children with an intellectual disability discuss sexuality with their children. Includes information on teaching social skills, talking to children about their bodies and feelings, decisions, STDs and exploitation prevention. Lots of personal stories about families and personal experiences addressing tough issues. Can be ordered through the Roeher Institute at www.indie.ca/roeher/catalogue. This book is listed under the Education and Learning category.
Special Education: Secondary Family Life and Sexual Health (FLASH) by Jane Stangle. Family Planning Publications, Seattle-King County Department of Public Health. Suite 300, 110 Prefontaine Avenue South, Seattle,WA 98104, 206-296-4672. A great curriculum that can provide lessons on teaching relationships, public and private, relationships, communication, puberty, feelings, exploitation prevention and more.
No-Go-Tell! Published by James Stanfield Company
www.stanfield.com 800-330-5851.

  

Approximately $399.00 for a set. A program designed for children with special needs ages 3-7 by experts who work with children with disabilities. The package includes pictures, anatomically correct dolls and lessons.
Delicate Threads by Debbie Staub. Published by Woodbine House Publishing, 1998. ISBN: 0933149905, $16.95. By comparing observations to current theories of childhood friendships, Debbie Staub helps us to understand the value of relationships between a "typical" child and one with moderate to severe disabilities. She also provides practical suggestions to help teachers and parents foster and maintain friendships in inclusive settings. This thought-provoking book provides important, real-life evidence about the merits of inclusion and can help guide educators and parents of all children.

WrightsLaw Comes to New Orleans
By Karen Scallan

On Monday, February 17th, Wrightslaw came to town for a one-day crash course in special education law and managing your child's special education. What an eye opener! The one-day conference was a condensed version of the 2-day boot camp offered in Baton Rouge on the Friday and Saturday before and knowing what I know now, I wish I'd gone to Baton Rouge for the boot camp!
For those who aren't familiar with Wrightslaw, Wrightslaw is Pam and Pete Wright. Pam Wright is a psychotherapist with training in psychology and clinical social work. She is the managing editor of The Special Ed Advocate, the online newsletter about special education legal and advocacy issues. Pete Wright is an attorney who represents children with special needs. Pete struggled with learning disabilities, including dyslexia, dysgraphia and ADHD. His determination to help children grew out of his own educational experiences.
This condensed version of the 2-day seminar focused on understanding your child's test scores (i.e., understanding and memorizing the bell curve); memorizing where to find applicable law to back up what you already know; organization; and curbing the urge to use a sledgehammer to get what you want for your child. Sounds strange? Well, once you take one of the Wrightslaw seminars, you understand the basis for their philosophy on how to maneuver in a screwed up system.
First, organization. The Wrights emphasize organization first and foremost. You will be writing letters, receiving letters, receiving test scores, evaluations, medical records and much more. If you are organized using their system, you'll never be unable to put your hands on something when a crisis or conflict occurs and it will. Pam and Pete Wright will tell you many times in a seminar to prepare as if you're going to litigation or arbitration and more times than not, you won't have to.

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WrightsLaw cont...

Next the test scores: The Wrights emphasize that being able to sketch a bell curve and it's labels from memory in an important IEP meeting will enable you to respond when a teacher tells you your child's doing better in a subject, but you know he's not. Everything needs back up with facts and you will need to say, "Well, Ms. Smith, I know you're doing such a great job with him. But, I'm not sure why his scores don't reflect that he's doing better. Jimmy was in the 85th percentile in reading, but on his latest test, let's see, Jimmy's only in the 50th." These are hard and fast facts that can't be disputed.
Next, the law. You need to know EXACTLY where the law is. You need to know what the law is. You need to know what your child is entitled to and what he's NOT entitled to. Going in to an IEP meeting, according to the Wrights, and asking for the "best," or "ultimate," for your child is a big fat "NO-NO." According to the Wrights, these are words that should never be spoken. You won't get a thing. BUT, knowing that the law provides for your child to have a "free appropriate" education….well, you get it…using words like "appropriate" instead of "best" may seem like a small thing, but it's a world of difference to an educational system that must operate under the law, but has very little money to do it.
And, finally, you need to use all of this, not to club a school employee with it when they tell you they can't give you an "appropriate" service because there's not enough money or that you're child can't have the accommodations for testing that you know he needs and is entitled to. The gel that holds all this together and makes it work is "DELIVERY." Throwing tantrums will only make people dig their heels in more and you'll never get what you want.
Well, that's the gist of the one-day seminar. It included 2 books written by Pam and Pete Wright…From Emotions to Advocacy and Wrightslaw. BOTH well worth the purchase price and available on their website, www.wrightslaw.com. In the near future the Wrights will be publishing a new book on the "No Child Left Behind" law and they will conduct seminars on this law also.
If you have an opportunity to attend a Wrightslaw seminar, don't hesitate to do it. There's a wealth of information. Usually Families Helping Families will have stipends to attend. You can call your local FHF office to determine if there are any stipends available in your area.
And watch the newsletter for Wrightslaw tips!

East Jefferson General Hospital Offers Support Group to Parents of Children with Special Needs or Disabilities

The Parenting Network, sponsored by East Jefferson General Hospital, is a support group for parents of children with special needs or disabilities. Linda Rosamano of EJGH's Social Services Department says they are currently looking for parents of children with disabilities to join their group. The Parenting Network is facilitated by Linda and provides parents with emotional support as well as information on finances, education and medical resources. Attendance is free and open to parents with children with all disabilities. The Parenting Network meets monthly, usually at a local restaurant in Metairie. For more information contact Linda Rosamano, BA, East Jefferson General Hospital, Social Services Department, 454-4073 and watch the Monday Times-Picayune Living Section for meeting information.

  WE WANT YOU!
FIRST ANNUAL ELECTIONS
COMING SOON

At our next general membership meeting on March 14th, nominations will be taken for positions on the board. Below is a list of positions and corresponding duties, as well as committee chair positions.

President
To preside at all meetings and perform all duties incident to the office.

Vice - President
Arrange the program for the regular monthly meeting and act as President in the President's absence.

Recording Secretary
Keep minutes of meetings, act as custodian of all corporate records and correspondence files, and act as President in the absence of the President and Vice-President.

Corresponding Secretary
Send out notices and is responsible for the organization's newsletter and electronic media. The corresponding secretary shall act as President in the absence of the President, Vice-President and Recording Secretary.

Treasurer
Receive and disburse organizational funds, keep membership records and financial records thereof and maintain a current financial report.

Parliamentarian

Committees
It is the responsibility of the committee chairperson to recruit members for the committees below. Committee chairpersons are required to attend each board meeting; if the committee chair is unavailable then the chairperson will send a representative to attend each board meeting.

1. Social and Special Events
2. Membership/Welcome
3. Finance/Funding Corporate Donations
4. Legislative/Advocacy
5. Self Advocate
6. Strategic Planning
7 .Outreach
8. Historian/Librarian/Resource Person
9. School Liaison
10. Inclusion Liaison
11. Public Relations / Media
12. Buddy Walk

ANYONE INTERESTED IN RUNNING FOR A POSITION SHOULD SUBMIT A BRIEF BIOGRAPHY INCLUDING A STATEMENT SUMMARIZING HIS/HER VISION OF AND/OR GOALS FOR OUR ORGANIZATION.

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Thank You’s !

The DSAGNO Holiday Party Committee and everyone in DSAGNO would like to thank the following organizations for their generous donations. Contributions from these companies helped make our Holiday Party the best yet.

Pepsi
Le Jouet Toys
Rite Aid
(Metairie Road Location)
Walgreen’s
(Metairie Road Location)

WrightsLaw Tip

Never use the word "best" or the terms "maximum potential" or "most appropriate." FETA, p. 46
Many universities have child development clinics and education and psychology departments that will evaluate your child at low or no cost. FETA, p. 57 If possible, look for an evaluator who can work with you and your child for several years. FETA, p. 62
When a child's IQ score declines, this is usually because (of) a head injury, tumor, test scorring error, or an inappropriate education. FETA, p. 98

   Web Sites

Artists:

Brown Bear Products
www.brownbearproducts.com
Eric David Behnke is a self-advocate and artist. Brown Bear Products is a web site devoted to selling his art, which includes posters, note cards, holiday cards, prints and paintings.

Michael Johnson
http://www.loveandlearning.com/michaelpage.shtml
On the Love and Learning web page (see Love and Learning below), link to a page for Michael Johnson, an artist with Down syndrome. Michael paints watercolors, acrylics and oil paintings. He shares an art studio and paints almost every day. On this web site you'll find Michael's paintings, note cards, art posters and Michael's new children's books.

Speech Therapy and Teaching Tools:

Love and Learning
www.loveandlearning.com
Love and Learning provides technique and materials (videotapes, audiotapes, books and computer programs) to help infants and toddlers with language and reading development. The web site includes parent testimonials and promotes constructive use of television programs along with books, audio and videotapes to enhance vocabulary and reading skills. A free demonstration CD is available.

Laureate Learning Systems, Inc.
www.laureatelearning.com
Founded in 1982 by two speech-language pathologists, Laureate Learning Systems publishes computer software for children and adults with disabilities. Laureate's programs are appropriate for a wide range of people from those with severe-profound developmental disabilities to mild language-learning disabilities. Laureate Learning Systems specifically offers software for persons with Down syndrome and developmental disabilities.

Innovative Therapists International
www.oromotorsp.com
Innovative Therapists International was founded by speech pathologists and occupational therapists who found that oral motor speech therapy is more successful in muscle-based speech disorders rather than traditional articulation therapy. ITI developed a specific, measurable program for oral motor speech therapy. They have incorporated oral-motor therapy into all types of articulation disorders -- muscle-based, phonological, developmental delay and apraxia/dysarthria. ITI provides materials to help with language/hearing impairments; feeding aids; tools for oral motor exercise and much more. They also appear at conventions and conferences, create tailor-made classes; conduct and appear at seminars and workshops. The web site provides a weekly question and answer, calendar dates and provides many articles on the subject of speech therapy and provides research and links. Look for Innovative Therapists International at the Modern Perspectives in Down Syndrome Conference at the Hyatt Regency New Orleans on September 13th and 14th, 2003.
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Websites cont…
General Information:

Disability Solutions
www.disabilitysolutions.org
Disability Solutions Newsletter is published six times yearly by the Enoch-Gelbard Foundation. This newsletter is full of in-depth articles on subjects such as speech difficulties in children with Down syndrome, sexuality education, wandering, communication with schools, etc. Newsletters are free and downloadable in adobe acrobat format.

Brookes Publishing Co.
www.brookespublishing.com
Brookes Publishing Company sells books and videos for parents of children with Down syndrome and other disabilities. Topics include early intervention, early childhood education, Down syndrome, disability/medical, special education and transition and employment and much more. Brookes Publishing also offers newsletters on early childhood, disabilities and education.

Products:

Band of Angels
www.Bandofangels.com
Band of Angels sells calendars, note cards and other materials with beautiful photographs of children with Down syndrome. You can also find information on the Ralph E. Waltenbaugh Scholarship Fund on Band of Angels' web site. The scholarship provides for post-high school education for people with Down syndrome. Each year, Band of Angels contributes a significant percentage of profits to sustain this scholarship fund. Applications are available on the web site.

A Positive Perspective
http://www.apositiveperspective.com/
A Positive Perspective offers unique, upbeat designs to help you promote awareness about Down syndrome and inclusion. Their variety of gift and personal items display positive messages and help create positive perspectives in others. A Positive Perspective offers several messages printed on tote bags, note cards, water bottles, mugs, pins, magnets, key chains, and note pads. Vote on your favorite message or style and you could win a free tote bag.

Mothers with Attitude
http://www.motherswithattitude.com/
Humor and help for adoptive moms,
special-needs moms, any old moms at all.

Norman Kunc & Emma Van der Klift
http://www.normemma.com/
 Professional Development on Disability and Non-Coercive

   Membership Renewal Drive Going on Now!!

Just a friendly reminder to renew your DSAGNO membership if you haven't already. Membership is only $15.00 per year and you get all 6 regular issues of the DSAGNO NEWS, plus special editions such as the Election and the Buddy Walk issues. You will want to stay up to date on new and exciting things going on in DSAGNO...we have a lot of wonderful events planned! Be sure to get your membership in soon so you can vote in the upcoming election. Only those with paid memberships will be able to vote. Elections will be held at the picnic on April 12th. For your convenience, payment of membership dues will be accepted at the General Membership Meeting in March.

COMING SOON!

In the May issue,

Travel for persons with developmental disabilities

"We Care"
New playground fully accessible to disabled children
to open in City Park

Election Results: "Meet Our New Board"

More WrightsLaw information and tips

April Picnic Highlights

We also hope to have an article on
Special Olympics