The calendar is at the printer and will hopefully be ready to be sold by the September meeting.  Many thanks to Lynette Lambert, Jayne Smith, Les Peterson and all the calendar committee for the hard work they have been doing.  The proofs look great and I’m sure the finished product will be as spectacular as in the past.

October is just around the corner and so is the Buddy Walk.  You should have received a registration brochure in the mail.  Please send them in ASAP, as we need to get an accurate count as soon as possible for the t-shirt order.  A limited number of shirts will be available at the walk, but we encourage all to pre-register.

The buddy walk will be a great event with many great exhibitors, events and a DJ.  Make plans to be there.  Many thanks to the buddy walk committee members who have worked so hard to make this possible.
Hope to see you at the next meeting and at the Buddy Walk!

Buddy Walk - OKC                               Top of Page
The Down Syndrome Group in OKC will have their Buddy Walk on September 27th in OKC at Remington Park from 9:30 AM to 1:30 PM if you are interested in attending their walk, too!

Buddy Walk          Top of Page
Sunday, October 19th from 2:00 PM to 5:00 PM at Whiteside Park, off of 41st Street between Yale and Harvard.
Get the word out. Everyone should of received a registration brochure in the mail. Make sure and meet the deadline to receive your shirts in time. We will have a limited number of shirts available at the walk, so order early! Please pass out brochures ( we can get you more or make copies of the one you have) and pass out to friends, family, co-workers... anyone you know.

John McGinley who plays Dr. Cox on the show “Scrubs” is the national spokesman for the Buddy Walks this year. He customized a radio plug for our DSAT group that will be playing on the radio stations a couple of weeks before the walk. If anyone has any connections to any radio or television stations, please contact Erin Paul at 495-2563. We want to get great media and radio coverage!

This is going to be a great family event you won’t want to miss. We will have several exhibitors that day to pass out information and answer questions. They include:  Special Olympics, Challenger League, Amtrykes, Sooner Start, Frank Baxter with Up with Down, TARC, Discovery Toys, and many more! We will have Jupiter Jumps, clowns, face painting, petting zoo, therapeutic dogs, free pony rides, police and fire trucks and much more. We will have 5 great door prize packages to give away that you won’t want to miss out on! Please spread the word about this great event.

October Declared Down Syndrome Awareness Month          Top of Page
Governor Brad Henry signed a proclamation that October will be declared as Down Syndrome Awareness Month in Oklahoma. This is great news for our Association. We have a signed letter by the governor that we can show off at the Buddy Walk!

September 18th The Way They Learn             Top of Page
A special video presentation by Cynthia Tobias. This video is for all ages and is about how kids have different styles of learning and how to meet their individual needs.

August Recap             Top of Page
In August we were privileged to have Frank Baxter as our featured speaker. Frank has a nonprofit organization, “Up with Down”. Frank started this organization to help children in Russia with Down syndrome. He has opened a school in Russia for children of all ages with Down syndrome. This was a remarkable task considering that most babies born with Down syndrome in Russia are left at the hospital to starve to death. There is little or no support from the community there for people with Down syndrome and even less support from the government. Frank told us many delightful stories of the lives he and his wife have touched in Russia. He also made us all feel very fortunate that our children were born here, in the United States where we are free to celebrate our children, not hide them. 

Frank has made it his mission to help these children. You might think that Frank has a child with Down syndrome or maybe a grandchild but he does not. What Frank has is a large heart that was touched by some children who happen to have almond shaped eyes and very sweet smiles. It was a truly inspirational meeting. In fact DSAT has pledged to fully support the school for one month.

What a wonderful way for our money to help children overseas! A big thank you to Frank not only for speaking to us but for all of the work you are doing.

Send donations to this school at:           Top of Page
Up with Down, 3109 N Battlecreek Drive, Broken Arrow, OK 74012.
For questions, contact 918-355-8856 or email baxter@gorilla.net

Please Vote           Top of Page
It is been brought to our attention that we might want to change the day of our meetings to accommodate more people.  In order to do this and get a general feel of the membership, please cast your vote by September 27th to Erin Paul at Erin-Adam@prodigy.net

Would you like to keep the meeting on the 3rd Thursday OR change to the 3rd Friday of the month. Please email me your thoughts.  We will go with the date that has the most votes!

Attention ALL Dads           Top of Page
There is a new website that is designed especially for DADS of children with Down Syndrome. In fact, there are even golf shirts, long sleeve mock shirts and hats available just for them!  DADS stands for Dads Appreciating Down Syndrome.  For more information contact Joe Meares at 317-523-5888 or check out the website at dadsds@yahoogroups.com

Directories
The directories are printed and ready to go.  Each family can pick up their directory at any DSAT event.  We hope this is a beneficial tool to help connect families together and share information.

Other Area Groups           Top of Page
In this and future newsletters we will be including the activities for the Muskogee Down syndrome group and for the new group that is forming for Spanish speaking families: Our Special Children.

Muskogee/Tahlequah Group            Top of Page
September 25th - If you missed Frank Baxter speak about starting a school in Russia at the last meeting, you can hear him speak in Muskogee!!  What an inspirational message!
November 6th - Dr. Lynn Cyert- Optometrist at Northeastern State University in Tahlequah Optometry College

Our Special Children
Support and Education for Tulsa Area Hispanic Families
A new group is forming in Tulsa for Hispanic families. The meetings will be at the Martin East Regional Library at 2601 South Garnett Road in the Lecture Room and childcare will be available. Meetings are going to be every 3rd Wednesday in 2003 and every 1st Thursday in 2004 from 7:00 PM to 8:30 PM.
Please spread the word if you know of anyone interested. For more information:  Spanish contact is Claudia Torres 477-9393 and the English contact is Nancy Chaboya, SoonerStart at 835-8691 ext. 274

Create A Stamp         Top of Page
We need your help to create a STAMP! I have a friend in North Carolina that is trying to get Congress to create a Down Syndrome Awareness Stamp.  She needs our help! All we need to do is write a short letter to the Citizens Stamp Advisory Committee that states why you, your family, and community feel a stamp to raise awareness is important. Address your letter to the committee and send it as soon as possible to:               Erin Paul, 3758 E 82nd Court, Tulsa, OK 74137. We will get them to the correct person. Thanks for your help. We feel this will be a great way to raise awareness!

Listserv            Top of Page
Join the Communicating Partners Listserv! You are invited to join the Communicating Partners listserv, where over 400 members write and ask questions about their late talking children. Many of the members are parents of children with Down Syndrome.

Join in discussing problems concerning communication development, and share success stories with other members.  This is and online support group that is available 24 hours a day.  The moderator, Dr. Jim MacDonald, answers questions and offers advice.  Go to this site http:/groups.yahoo.com/group/communicating and follow the directions to join.

Thank You!                Top of Page

Thank you to the following contributors. We couldn’t do it without you:
Dues Paid
Chris & April Wegener
Angela Laboyteaux
Rebecca Williams

Donations
Platinum Sponsorship
$1,000
SIR MIR
Office Depot
Mesa Products

Gold Sponsorship
$500
LaFarge Cement North America/Tulsa

Silver Sponsorship
$250
Independent Tubular Corporation
Sam and Sandra Cerny

Bronze Sponsorship
Natural Health Chiropractic
Intervest Management
Tullius Taylor Sartain and Sartain
Egleston Chiropractic
Women’s Health Clinic

Calendar                Top of Page
September  17th
Our Special Children
First Meeting for Hispanic Families

September  18th
DSAT Meeting
“The Way They Learn”
Cynthia Tobias
We will watch a video entitled “They Way They Learn”. This video is about how kids have different styles of learning and how to meet their individual needs. This is for all ages and for the whole family! Cynthia Tobias spoke at the Governor’s Conference and this is a video of her excellent presentation. She has many books out and so many ideas that are so simple. We will have the books available for checkout.

September  25th
Muskogee/Tahlequah Meeting

September  27th
Oklahoma City Buddy Walk
Remington Park

October
No Regular Meeting

October 19th                        Top of Page
DSAT Buddy Walk
Whiteside Park
2:00 PM to 5:00 PM

November 20th
DSAT Meeting
Helping Hooves
Helping Hooves will do a presentation on therapeutic horseback riding.

December
DSAT Christmas Party
Date and Time to be announced

Treasurer’s Tidbits                    Top of Page
Many employers match eligible employees’ charitable contributions. Finding out if your employer offers a matching gift program can double your contributions to DSAT.

Newsletter Deadlines                Top of Page
Share with us your stories, good news and interesting facts. Have your announcements, stories and information to Kendra Pennington 889-2954 or KendraOT@hotmail.com by October 25th for the November newsletter. It is our hope to provide the most current information.

Resource Information            Top of Page
There are several books published by Woodbine House that provide great information about Down Syndrome. They will provide a free catalog by calling 1-800-843-7323 or on the web at  www.woodbinehouse.com www.woodbinehouse.com
Classroom Language Skills for Children with Down Syndrome
Teaching Reading to Children with Down Syndrome
Early Communication Skills for Children with Down Syndrome
 (new version)
The Down Syndrome Nutrition Handbook
Medical and Surgical Care for Children with Down Syndrome
Fine Motor Skills in Children with Down Syndrome
Gross Motor Skills in Children with Down Syndrome
They also have children’s books for siblings and books that have children with Down Syndrome as the main character!

The Guided Tour is the first professionally supervised travel and vacation program in the US for persons with developmental and physical challenges.  If you are interested in more info about these supervised vacations, contact 215-782-1370 or www.guidedtour.com
                                                                                               Top of Page
Handwriting Without Tears is a workshop that is coming to Tulsa on December 6th. There is a substantial registration fee. If you are interested in more information visit the website at www.hwtears.com or contact Emily at emily@hwtears.com or call (402) 492-2766.

The Developmental Workout with Bobby Johnson is a Developmental Fitness Company that specializes in wellness and fitness programs for those with developmental disabilities. If you are interested in these exercise videos, contact Developmental Fitness Company at 215-699-3075 or info@developmentalfitness.com

Gabby Gadgets is an innovative company created by a sister team of speech and language pathologists.  They provide a Talking Tales Kit for favorite children’s books.  The kits include animals, letters, etc. to go with the story to encourage your child to talk and verbalize with the story.  A neat way to interact with your child while reading!  Shop online at www.gabbygadgets.com or call 864-414-2089. 
Top of Page
Emma’s Gifts is a story of love, hope and possibility. It is a great resource for parents of children with special needs and educators who seek info about early intervention and an inclusive classroom setting.  It is heartwarming and motivational film.  Call 704-374-1778 for more info or www.endlesshorizonproductions.com 
Interactive Reading Books are designed to be used on many levels.  Utilizing the power of visual strategies, the children learn to associate pictures with words.  The fun, interactive nature of these books is rewarding to children with and without special needs.  There is a book you can start as early as 2 years of age! Contact 661-263-7661 or www.greenhousepub.com
 

NOTE: This article was written in October 2001 and originally found on the USA Today website.
DSAT does not take a stand on the validity of the vitamin or Piracetam studies. DSAT copied this from the Down Syndrome Association of Dallas.
                                                               Top of Page
John C. McGinley Walks Rounds For Down Syndrome
By Adele Slaughter, Spotlight Health
With medical adviser Stephen A. Shoop, M.D.
 
 

John C. McGinley, shown in his ‘Scrubs’ garb, is ready to make strides for Down syndrome.

On NBC’s quirky new medical comedy Scrubs, John C. McGinley is winning praise for his portrayal of the hard-edged, often annoyed Dr. Cox. But as a dad, McGinley has had to be a softer, more patient mentor. McGinley’s four-year old son, Max, has Down syndrome (DS).

“For a while all we could do was circle the wagons and focus on our son,” says McGinley. “But we’ve had a good two-year run. He’s had a huge growth and developmental spurt and he’s in phenomenal shape. All of a sudden we can get our heads above water and participate in things like the Buddy Walk that help people other than Max.”
In an effort to promote acceptance and inclusion of people with DS, the National Down Syndrome Society (NDSS) in 1995 created the Buddy Walk. In the annual event, people with DS invite friends to walk with them. Family members, teachers, co-workers, politicians, and celebrities stroll a symbolic mile. With October designated as National Down Syndrome Awareness month, more than 130 Buddy Walks will trek across the USA. McGinley, who also has appeared in six Oliver Stone pictures, is the Grand Marshal for the Los Angeles walk, to be held in Griffith Park on Sunday.

Any given child                                         Top of Page
Down syndrome is the most common chromosomal disorder. Caused by an extra chromosome, DS causes delays in physical and intellectual development. While a woman’s chance of having a child with DS increases with age, approximately 85% of children with the disorder are born to women under 35. “We use amniocentesis for prenatal screening after 35,” says Dr. Julie R. Korenberg, professor of human genetics and pediatrics at UCLA. “An increasing number of women are being screened by a triple screen test. We look at the mother’s blood at 15 weeks, testing the level of three different hormones. You can predict most of the babies who have DS.”
DS occurs once in every 800 live births. According to the NDSS, each year there are about 6,000 babies born with the chromosomal disorder with a total population of about 350,000. Children with DS have a distinct appearance, with round faces, short noses, and up slanting eyes. Their fingers are short, and they often have a single crease in their palm. At birth, infants have a “floppy” muscle tone, which improves as they age. They are of an average size at birth but grow slowly and remain small.

“The first doctor who came into the room told us that there were adoption agencies for children like Max,” recalls McGinley. “We kicked him out, felt sorry for ourselves for a second until we went over to the ICU and saw this little boy who was like, ‘You guys going to help me or not?’”
And children with DS do need help. They are at an increased risk of developing a variety of physical problems, including: congenital heart defect, gastrointestinal blockage, leukemia, respiratory and ear infections, hearing loss and poor vision .

“At first Max’s heart wasn’t converting the blue blood that goes into the heart into oxygen-rich red blood,” says McGinley. “He stayed in the neonatal intensive care unit for a while, because we didn’t know if he had a heart defect or not. We dodged a bullet on that one.” Max was released from the hospital and the McGinley’s brought their baby home with an oxygen cannula strapped around his nose.

“A year and a half later Max started having seizures,” says McGinley. “When you have a kid who is already developmentally delayed the last thing you want is seizures to set him back a little longer. As a result, his speech was quite delayed.” Now, with his seizures under control, Max is being mainstreamed at a local preschool and is learning gymnastics.
Top of Page
Treatments 
“There is no specific treatment for children with Down syndrome,” says Dr. Peter Waldstein, a pediatrician affiliated with Cedars Sinai Medical Center. “You treat them like all your other patients.”
“Max has a lot of different doctors because my ex-wife is the most proactive parent on the planet,” says McGinley. “Any possible edge that Max can get she’s on it.”

“We give Down syndrome patients supplemental vitamins and something called piracetam to help their memory,” says Waldstein, who treats McGinley’s son. “I’m not sure whether it helps.”
“There are no studies to support that the vitamin protocol and piracetam actually help Max,” says McGinley. “But he has never had an ear infection and doesn’t get sick.”

However, there is some controversy about the efficacy of using therapies not approved by the FDA. “Vitamins can’t hurt as long as you’re not giving them in huge doses,” says Korenberg, who is funded by the NIH to research DS. “As far as piracetam — it was thought to quiet down the brain. But this past April, a Canadian study showed it didn’t help, and there were more problems in the children who were treated with piracetam.” Korenberg is confident researchers ultimately will define dietary and vitamin therapies to improve the quality of life for individuals with DS. “We are working on taking the genes on the 21st chromosome and fixing them,” says Korenberg. “If we can figure out which genes are responsible for brain development, we can treat them. We don’t have to make everybody into perfect people. How much would we have to improve a child with DS to help them live in the normal population? Just a few IQ points — and that might be possible.”

For parents of children with DS, possibility is often replaced by reality. “Every time a doctor comes in, you think that doctor is going to cure your son — and this is not an exercise in verbs — but it’s the wrong word,” says McGinley. “Nobody is going to come in and cure him, they’re going to treat him, and at the end of the day the doctors are going to go home.” 

But a cure is not what drives McGinley. Max has changed his life in ways he could not have predicted. “He is so beautiful and he doesn’t want anything from you,” says McGinley. “Max has a profound effect on people. I thought I had an idea of what love was and then Max showed up.”
 
 

DISCLAIMER:  The Down Syndrome Association Of Tulsa does not promote, recommend or endorse any service, professional or organization.  Decisions regarding the use of any service, professional or organization are the sole responsibility of the family or guardian.        Top of Page
 

Vice President:
 Erin Paul       355-0193 email
 

Secretary:
Kelly Johnston 

Treasurer:

Newsletter: 
Kendra Pennington    (918) 889-2954   Kendra's E-mail
 

Calendar Coordinator

Scholoarship/Library Committee
Jill King 

Party Planner

New Parent Packets

Development Coordinator 
Erin Beach 

Web Master
 E-mail Tracey Wilson