As I prepare a message for this month’s newsletter I find the little problems I’m faced with from day to day take on a much less critical component today as last week.   For as you see this is a week since the tragic incident in New York City and Washington D.C.   I think we all are mesmerized with the events that take place in our lives and around the world.  

I only mention this in remembrance of such tragedy and the affect it has had on our country.  By the time this is in the mail and delivered many things will have transpired and more will be known about the perpetrators of our land.  

I trust that justice will be delivered and our country will be strengthened in the long run.   Just as many of us have been strengthened and found blessings in what at first was painful and tragic news of having a child with Down syndrome.  

Time has a way of healing the deepest wounds and maturity of the ages teaches us more about the priorities we should hold value to than can be described in words.  

We will always have troubles in our lives and problems to be dealt with but there are always ways to approach them with balance and tolerance.  As the following story describes: 

A carpenter  hired to help restore an old farmhouse had just finished a rough first day on the job. A flat tire made him lose an hour of work, his electric saw quit, and now his ancient pickup truck refused to start. 

While being driven home by his friend , he sat in stony silence. On arriving, he invited his friend  into his house. As they walked toward the front door, he paused briefly at a small tree, touching the tips of the branches with both hands. When opening the door, he underwent an amazing transformation. His tanned face was wreathed in smiles and he hugged his two small children and gave his wife a kiss. 

Afterward they walked back to the car.  They  passed the tree and his friends curiosity got the better of him .  He asked him about what he’d  seen him do earlier. Oh, that’s my trouble tree,” he replied. “I know I can’t help having troubles on the job, but one thing’s for sure, troubles don’t belong in the house with my wife and the children. So I just hang them up on the tree every night when I come home. Then in the morning I pick them up again.” 

“Funny thing is,” he smiled, “when I come out in the morning to pick ‘em up, there ain’t nearly as many as I remember hanging up the night before.”

August Recap                    Top of Page
 Miss Shelly of Miss Shelly’s Dance Studio told us about her class for children with special needs.  The class is free of charge and there is no age limit.  Please contact the studio (81st & Sheridan) if you are interested in more details.  Miss Shelly has thoughtfully considered all children in offering this class.  Thanks, Miss Shelly for support the disability community.
September Recap            Top of Page    
 Jan Pride shared the story of Happy Hands. They are a Christian Childcare Service serving children with hearing loss. They charge a tuition for childcare services, but they are a non-profit organization. She also shared research that children who use signs have a better vocabulary and it is felt that signs are a natural bridge to vocalization. In some research, babies who have used signs have higher test scores when they are older and that signing strengthens visual memory and aids in complex thoughts. Early language is important, as studies have shown that 75% of what you learn happens before you are 5 years old. 
2002 Calendar Update           Top of Page      
 THEY’RE HERE!!!  The 2002 calendar was unveiled at a party in early September.  Everyone who came to pick up calendars was enthusiastic about the calendars.  The calendar is one of the most positive ways to get the word out about DS.  What could be better than cute pictures of our kids! The calendars sell for $12.   Calendars will be available for sale at every DSAT event (meetings and parties).  You may also contact any officer or calendar committee member if you need more.  We are already well on our way to a sell out!
2003 Calendar Update          Top of Page
 Yes, you read right.  Rebecca Reifsteck , our new calendar coordinator is gearing up to start planning shots for the next calendar.  We hope to be able to get some fall shots (leaves, pumpkins) and snow shots so the profiles went out early.  If you did not receive a profile application, please contact Rebecca at (918)683-6919 (Muskogee).  We are also looking for members willing to make a commitment to be on the calendar committee.  It would require attending meetings and helping with photo shoots.  Please call Rebecca if you are willing to volunteer your time.

MEDICAL CARE OF PEOPLE WITH DOWN SYNDROME:            Top of Page

Although Down syndrome is not a medical illness, there are a number of pathological processes which are more common in people who have the condition. These associations will necessarily bring people with Down syndrome into frequent, and at times intensive, contact with doctors.

Neonatal period: Immediately after delivery the child should be fully examined to confirm the diagnosis and to identify any immediate medical problems. Pediatric consultation is appropriate in most situations.

Cardiac: Congenital heart disease, usually in the form of endocardial cushion defects, affects 40% of babies and should be screened for by echocardiography soon after birth as it may well be difficult to detect. Septal defects and Fallot’s tetralogy also occur. The discovery of severe congenital malformations often raises the issue of how interventive to be. It must be emphasized that exactly the same medical and surgical treatment should be instituted for a child with Down syndrome as for a child without a chromosomal disorder.
Severe congenital heart disease remains a major killer of children with Down syndrome, despite advances in surgical treatments. In the absence of a congenital heart defect, however, the majority of children can expect to live into their sixth decade.

Gastrointestinal: The commonest congenital abnormality of the gastrointestinal tract associated with Down syndrome is duodenal arts, although pyloric stenosis, Hirschsprung’s disease and tracheo-oesophageal fistulae have all been reported. Again, surgical intervention should be evaluated without reference to the chromosomal disorder. The total incidence of GIT malformations is approximately 12%.
Vision: Three percent of newborns with Down syndrome will have dense congenital cataracts which should be removed early. Glaucoma is also more common.

Feeding: Hypotonia is a constant feature of neonates with Down syndrome. This floppiness can interfere with breastfeeding and an experienced lactation consultant may need to be involved to ensure that the process is successful. Feeding tends to take longer and there may be attachment problems due to a protuberant tongue. Some babies experience difficulty maintaining temperature and may need extra swaddling during feeding. Constipation is more common due to hypotonic gut musculature.

Congenital Hypothyroidism: This condition is slightly more prevalent in babies with Down syndrome. It should be detected by the routine heelprick screen performed on all neonates.

Congenital dislocation of the hips: Joint laxity and hypotonia can combine to increase the incidence of hip dislocation, although true congenital dislocation is quite rare. Extra care should be taken during the usual neonatal examination.

Infancy: Once any urgent medical conditions have been addressed and feeding has been successfully established, the parents will take their new baby home. If the general practitioner has not been involved during the in-patient stay, early contact is important to allow an assessment of the child’s baseline medical condition. This “well child check” means that the doctor need not be confronted for the first time by an unfamiliar and obviously sick child several months later.
Medical care in the first year of life will include the continued management of any problems identified in the neonatal period as well as surveillance for acquired problems such as hearing or visual impairments. Early and regular contact with appropriately-experienced consultants should begin in the first year.

Seizure disorders are more common in children with Down syndrome (approximately 10%) and can occur from an early age. They are usually chronic in nature.
People with Down syndrome have reduced cell-mediated immunity and so babies in particular are likely to suffer more respiratory infections. Upper airway obstruction is also more common due to hypertrophy of tonsils and adenoids. This alteration in immunity has also been implicated in the observed increase in incidence of leukemia in people with Down syndrome, although the link is not clear.
In practical terms the decrease in immunity has little impact. The normal childhood immunization program should be commenced at the usual time.

The philosophy of “early intervention” is now well accepted as having benefits for the child and family. This refers to home-based or center-based treatment of a disabled child by a variety of health professionals such as occupational therapists, physiotherapists and speech therapists from a very early age. The parents are also involved as therapists. These recognized, government-sponsored programs tend to be preferable to the so-called “fringe” therapists who can be exhausting of parental resources without producing many results.

Additional medical information can be found at http://www.nas.com/downsyn/dshm.html

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

Dues Paid
Dora & Gary Durland

Contributions In Memory Of
Marilyn LaPointe
Dora & Gary Durland
Mary Ann Duncan

Caregivers for August meeting
Hannah Edgmon
Sara Roberson
Jesse Luper

Caregivers for September meeting
Sara Roberson
Hannah Edgmon 
Anne Margaret Techanchuk
Sonja Techanchuk

Good News                Top of Page
 The Junior League of Tulsa has signed on to help with our Christmas party again this year.  They will provide funds as well as volunteers.  Thanks Junior League!
 

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.
 

FOR SALE                      Top of Page
DSAT now has many items for sale.  Items will be available at all meetings and parties or by contacting any officer. The items available are:
White polo shirts with DSAT logo $20
White canvas hats with DSAT logo $10
“Far Different Places”  (inspirational music)  CD $10  Tape $6
Songbook $6
Video tape of all calendar  pictures set to music  $10

DSAT CALENDARS! $12

                                                  Top of Page                

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.     
 

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
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