DOWN SYNDROME ASSOCIATION OF TULSA
P.O. Box 54877
Tulsa, OK  74155                                                                                                                                         DSAT Home Page
Contents April/May  2001
   President's Message
   Bad Weather Policy
   February Recap
   Spring Celebration
   2001 Calendar Update
   DSAT Items For Sale
   We Need Your Help
   Appreciations and Thank You
   Newsletter Confusion
   Research
   Upcomming Meetings and Events
   Before the IEP
 Officers/Volunteers/Contacts
President’s Message   Top of Page

I would first like to express my apologies for some for the delay that some of you may have experienced in receiving your February newsletter.  As with any new process it takes a while to iron out the wrinkles and such is the case with our new process of getting our newsletter distributed.   Rest assured we have taken the steps necessary to correct the delay in the future and are committed to providing you with information about what is happening in the organization in a timely manner. 

Secondly, in February we experienced a dilemma of deciding on whether to have our scheduled meeting or to cancel it due to anticipated hazardous road conditions.   This is the first time I have been involved in making this decision and learned that we needed to establish some procedures for those time when weather conditions might warrant us canceling one of our regularly scheduled meetings.   In the future when such conditions, if possible check our web site for the most up to date information on our meeting schedule.  There you will find out if we have had to cancel a meeting for any reason.  We will also post a message on our voice mail box that will indicate if our meeting is cancelled and you can always call one of the officers if you have question about a cancellation. 

We do want to maintain a regular schedule that promotes participation and involvement from as many as possible.  I believe that regular activities demonstrate our commitment to the community and the individuals that we are advocating for. 

I have presented you with some of the challenges we have faced for the beginning of the year and possibly some of our shortcomings. With this said,  I am reminded that once a year we call on those of you that can to contribute $20.00 towards the operational cost of the organization. 

This has been considered dues or membership fees in the past and is still considered as such while not discouraging anyone from participating.  The contribution is not mandatory for coming to the meetings or participating at the events.  It is in recognition of and support of the operational cost required for us to maintain minimal services.  Our other fund-raising as I have stated in the past is earmarked for expanded services and other growth opportunities of the organization.  Many exciting things are being discussed and talked about so stay tuned in as they become more concrete. Contributions can be mailed into our P.O. Box and will be recorded promptly. 

In closing I would like to tell this story about a  man that drove his car into a ditch out in the country.  He was not hurt, but he was stuck and he couldn’t get his car out of the ditch.  He asked a farmer for help. The farmer said: “I have an old mule named ‘Dusty’.  He can pull you out.”  The farmer hooked dusty up to the car and when all was ready, the farmer snapped the reins and shouted: “Pull Jack! Pull Joe!  Pull Bill Pull Dusty!”  Amazingly, that old mule pulled the car out of the ditch with ease. The car owner was impressed and was very grateful.  But he said to the farmer:  “Why did you call Dusty by four different names?”  The farmer said: “Well, old Dusty’s eyesight is just about gone.  If he thought for a minute that he was the only one pulling, he wouldn’t have tried at all!”

I’m so glad that I’m not the only one pulling.
 
 

NEW Bad Weather Policy                 Top of Page

DSAT has now established a policy regarding inclement weather.  If there is any question about whether or not we will have a meeting or other event, there are two options available.  Our website, www.DSAT.org, will be updated immediately to show a cancellation and our information line 748-5656 will have a brief message as well.

February Recap                      Top of Page

Our February meeting was rescheduled due to bad weather.  The decision was made early that day to cancel the meeting.  Our concern was that the roads would be getting worse throughout the day and evening. We serve a large area with lots of active members from all over NE Oklahoma and did not want families out on what could have been dangerous roads.  An effort was made to call all members who regularly attend meetings and anyone whose phone number we had.  If we missed letting you know, we apologize for the oversight.  We are always trying to improve so we  have now established a bad weather policy in the event that there is questionable weather for any meeting or event sponsored by DSAT. Hopefully this will alleviate any problems in the future.  We are sorry for any inconvenience this might have caused.

Spring Celebration               Top of Page 

We will be having our annual Spring Celebration this year on April 7, 2001 from 2pm to 5pm at Safari’s Exotic Wildlife Park.  The park is located at 26881 E. 58th St. in Broken Arrow, OK.  Directions to the park: Take the 71st Street exit off the Broken Arrow Expressway, go 5.5 miles to 273rd St (Oak Grove) take a left on Oak Grove (273rd) and then take another left at 58th St. There will be signs.  The phone number is 357-3386.  There will be excellent entertainment, so don’t miss this opportunity to bring the whole family and meet other folks in an informal way.
This is an outdoor only park so please dress accordingly.  Also, in case of bad weather check our information line or website for cancellation information.  Don’t forget to bring your Easter baskets for  the egg hunt  If you have any questions about the spring celebration or would like to help bring something, please call our party planner, Kimberly Myers at 266-3214.

2001 Calendar Update                  Top of Page

The figures are in and the top calendar sales are as follows: 
 Kim Wofford 115 Lisa Walkingstick 65
 Lynette Lambert 104 Jaque Canady 55
 Teresa McHenry 75 Jayne Smith 55

A big thanks to everyone who sold calendars and helped us get the word out about DSAT and Down Syndrome in general.  Please turn in all calendar money and left over calendars as soon as possible.  We are already beginning the 2002 calendar and need to keep everything separate.
2002 Calendar Update
The response has been overwhelming!  We received over 60 calendar profiles for the 2002 calendar.  Now the committee has the difficult task of choosing subjects and potential shots.  Photo shoots will begin shortly.  This year we have the luxury of time so the shoots will be spaced out over several months. Les Petersen, our favorite guy, has once again agreed to take care of all photography, film, etc.  If you get the opportunity, please let Les know how much he means to our group.  We couldn’t have done it without his generous contribution. It is our goal this year to find ONE company to sponsor the entire cost of printing the calendar.  If you know of a company that might be interested or need more specifics, please contact Lynette Lambert, our calendar coordinator, at (918) 682-6634.

FOR SALE                      Top of Page

White polo shirts with DSAT logo $20
White canvas hats with DSAT logo $10
“Far Different Places” 
 (inspirational music)  CD $10
  Tape $6
Video tape of all calendar 
 pictures set to music  $10
and of course CALENDARS!  $12
Items will be available at all meetings and parties or by contacting any officer.

We Need Your Help!             Top of Page 

Sponsorship for the
2002 Calendar
Easter items for our
Spring Celebration
Please contact
Kimberly Myers at 266-3214
to help make our celebration special.

We would love to have your stories;
a cute story, school or sport successes,
dates of interesting meetings, or conferences
to put in the newsletter.
If you find it entertaining or interesting, others will too.
So call Kim Wofford at 622-6906 or email her at:  woffordnate@webzone.net
and help us personalize your newsletter.

Be a part of this exciting time at DSAT!

Thank You! 
 Top of Page
Thank you to the following contributors.
We couldn’t do it without you:

Dues Paid
The Pinney Family

Contributions
Made In Honor Of
Libby Frost
Grace Reber

Caregivers for
January meeting
Jesse Luper Hannah Edgmon
Christy Luper

Public Awareness
Karen Baker - Homeschooling Conference
Kim Wofford - Tulsa Community College

Newsletter Confusion                   Top of Page

Our February newsletter arrived  at various times during February due to some confusion over bulk mailing issues.  Bulk mailing offers a cheaper rate of postage for large mailings but mail is delivered in a much less timely fashion.   Incor, Inc. has been wonderful in working with us.  It was decided that Incor will copy and assemble the newsletter FREE OF CHARGE and we will pay for first class postage to assure the newsletter arrives in a timely fashion.  At this time, bulk mailing is not a cost effective option for DSAT.  So look for future newsletters to arrive approximately one week before a scheduled meeting.  If you do not receive either a newsletter or postcard each month contact Kim Wofford at 622-6906 to be sure your current address is in the system. Have your announcements, stories and information to Kim Wofford by May 18th for the June, 2001 newsletter.

Research                      Top of Page

New medication used for an investigational purpose to study possible benefits in young adults with Down syndrome: A recently approved medication for patients with Alzheimer’s Disease is being studied for possible benefits in improving cognitive and global functioning in young adults with Down Syndrome. This medication is widely accepted as the drug of choice for improving symptoms of Alzheimer’s disease. It is now being studied for effectiveness and safety in persons with Down Syndrome who may not yet exhibit any cognitive deficits but who may be susceptible in the future.
Who: Young males and females with Down syndrome aged 18 to 35.  Each participant must have a reliable caregiver who has contact with them daily, and can accompany them to each of the 4 visits.

What: This is a 3 month, double-blind clinical trial using one       5 mg tablet daily of the study drug, or its matching placebo, for 6 weeks followed by 10 mg daily for the next 6 weeks.  Those who complete the trial are eligible for an additional 3 month open-label extension of the study drug.  All study-related visits and medication are free of charge.

Where: Clinical Pharmaceuticals Trials, Inc. is located in the St. John’s Doctors Building, 1705 E. 19th St. Suite 406, Tulsa, OK 74104.  Call 743-4374 and ask for the study coordinator, Mary Donavan, or Dr. Ralph Richter.

CALENDAR                    Top of Page
Spring Celebration
April 7th
Safari’s Exotic Wildlife Park
26881 E. 58th Street - Broken Arrow, OK
Don’t forget your Easter baskets!

DSAT Meeting                       Top of Page
May 17th
Hearing and the person with Down Syndrome
Allison Finch, M.S., CCC-A, Audiologist will be discussing different hearing tests, ear tubes and how hearing affects speech in a person with Down Syndrome.  Don’t miss this important topic!
 

Before The IEP                   Top of Page
An excerpt from the book Extraordinary Kids, nurturing and championing your child with special needs by Cheri Fuller and Louise Tucker Jones

Here are some ways to prepare before meetings with educators and professionals to develop your child’s individualized education plan: 

1.  Determine what your child has accomplished since their last IEP.  Review records and notes on past meetings.  Collect records you will need to share.  What was your main goal?  Has it been accomplished?  Is it still relevant? 

2.  Look at your child’s life now-What are they doing?  What do they need?  Do they actually need occupational therapy, or is it a hassle for 30 minutes a week?  What skills would you most like your child to learn?  What do you believe are their strengths and weaknesses?  Focus on the big things- the main goals you want to reach and how to achieve them. 

3.  Write down a list of questions you want to ask, information you’d like the teacher to be aware of, and suggestions you have for your child’s program. 

4.  Visit with the teacher before the conference, and get their input.  What do they think your child’s strengths and weaknesses are right now?  Where have they seen improvement.  Where is your child lacking?  What would help them facilitate the goals that you have set for your child?

5.  With the teacher’s feedback and your goals, determine what you want to bring to the IEP meeting, and propose how it can be accomplished.  For example, if your child needs to work more on math, you could suggest a computer program that makes it fun.  Come up with different options. 

6.  Be on time to the IEP meeting. Take your spouse and/or a friend who is an educator, even an outside professional if needed.  Since objectives are often worded in an unusual or technical way, read everything carefully when the IEP is finished.  Check to see if there are starting and ending times for goals.  You can even take the IEP home and study it if you don’t feel comfortable signing it at the meeting. 

7. Remember that you, the parent, are the expert on your child.  That expertise isn’t based on what degree you have; you simply know your child best.  Be gracious.  Give in where it doesn’t matter, but fight for the big things that will make a difference in your child’s life and learning. 

After the meeting, before signing the IEP, check your notes.  Make sure that all goals are covered and you and the school personnel are in agreement.  Then discuss the plan with your spouse and child if the weren’t present.

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.
 

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.
 

President: 
 Tracey Wilson  (918) 288-7719 or (918) 488-4060  Top of Page
                  Fax (918) 288-7897         E-mail Tracey Wilson

Co-Vice Presidents:
Daughn & Karen Baker 343-2988
Kim Wofford     (918)  622-6906 

Secretary:
Kelly Johnston

Treasurer:
Kim Wofford (918) 622-6906                Kim's E-mail

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

Calendar Coordinator
Lynette Lambert
(918) 682-6634 

Scholoarship/Library Committee
Marilyn Lapointe  (918) 371-2279
Jill King 

Party Planner
Kimberly Myers   (918) 266-3214 

New Parent Packets
Karen and Daughn Baker (918) 343-2988

Development Coordinator 
Erin Beach 

Web Master
 E-mail Tracey Wilson