DSAT, Down Syndrome Association of Tulsa, is a parent support group with over 330 families on the mailing list. We provide new parent packets to new families in the hospital, quarterly meetings with informative speakers, fellowship activities throughout the year including annual holiday party.. DSAT also has an annual Buddy Walk, which provides awareness in the community and has over 2,000 attendees. DSAT also has a calendar each year that features our DSAT children and adults that we are so very proud to show off.

According to the Centers for Disease Control and Prevention, approximately one in every 772 babies in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition. About 5,100 babies with Down syndrome are born in the United States each year.

All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

Prenatally - There are two categories of tests for Down syndrome that can be performed before a baby is born: screening tests and diagnostic tests. Prenatal screens estimate the chance of the fetus having Down syndrome. These tests do not tell you for sure whether your fetus has Down syndrome; they only provide a probability. Diagnostic tests, on the other hand, can provide a definitive diagnosis with almost 100% accuracy. There is an extensive menu of prenatal screening tests now available for pregnant women. Most screening tests involve a blood test and an ultrasound (sonogram). The blood tests (or serum screening tests) measure quantities of various substances in the blood of the mother. Together with a woman’s age, these are used to estimate her chance of having a child with Down syndrome. These blood tests are often performed in conjunction with a detailed sonogram to check for “markers” (characteristics that some researchers feel may have a significant association with Down syndrome). New advanced prenatal screens are now able to detect chromosomal material from the fetus that is circulating in the maternal blood. These tests are not invasive (like the diagnostic tests below), but they provide a high accuracy rate. Still, all of these screens will not definitively diagnose Down syndrome. Prenatal screening and diagnostic tests are now routinely offered to women of all ages. The diagnostic procedures available for prenatal diagnosis of Down syndrome are chorionic villus sampling (CVS) and amniocentesis. These procedures, which carry up to a 1% risk of causing a spontaneous termination (miscarriage), are nearly 100% accurate in diagnosing Down syndrome. Amniocentesis is usually performed in the second trimester between 15 and 20 weeks of gestation, CVS in the first trimester between 9 11 and 14 weeks. At Birth - Down syndrome is usually identified at birth by the presence of certain physical traits: low muscle tone, a single deep crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes. Because these features may be present in babies without Down syndrome, a chromosomal analysis called a karyotype is done to confirm the diagnosis. To obtain a karyotype, doctors draw a blood sample to examine the baby’s cells. They photograph the chromosomes and then group them by size, number, and shape. By examining the karyotype, doctors can diagnose Down syndrome. Another genetic test called fluorescence in situ hybridization (FISH) can apply similar principles and confirm a diagnosis in a shorter amount of time by visualizing and mapping the genetic material in an individual's cells.

DSAT offers immediate support. We have a new parent packet that is very informative and answers any questions you might have. Please contact us so we can get you this valuable information.

Becoming involved in a support group allows you the opportunity to fellowship, get resources and get questions answered by people that are in similar situations. There is nothing better than being surrounded by people that understand what you are going through. We encourage everyone to get plugged in.

Regardless of the type of Down syndrome a person may have, all people with Down syndrome have an extra, critical portion of chromosome 21 present in all or some of their cells. The cause of the extra full or partial chromosome is still unknown. Maternal age is the only factor that has been linked to an increased chance of having a baby with Down syndrome resulting from nondisjunction or mosaicism. However, due to higher birth rates in younger women, 51% of children with Down syndrome are born to women under 35 years of age. There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents’ activities before or during pregnancy. The additional partial or full copy of the 21st chromosome which causes Down syndrome can originate from either the father or the mother. Approximately 5% of the cases have been traced to the father.

Down syndrome is one of the most common genetic variations and occurs in approximately one in every 700 live births in the United States. For most people, each cell in the body has 23 pairs of chromosomes. One chromosome in each pair comes from the mother and the other comes from the father. But sometimes, during cell division, an extra copy of the 21st chromosome is present. As the cells multiply and the pregnancy is carried to term, a baby with Down syndrome is born.

For centuries, people with Down syndrome have been alluded to in art, literature and science. It wasn’t until the late nineteenth century, however, that John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, that earned Down the recognition as the “father” of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity. In recent history, advances in medicine and science have enabled researchers to investigate the characteristics of people with Down syndrome. In 1959, the French physician Jérôme Lejeune identified Down syndrome as a chromosomal condition. Instead of the usual 46 chromosomes present in each cell, Lejeune observed 47 in the cells of individuals with Down syndrome. It was later determined that an extra partial or whole copy of chromosome 21 results in the characteristics associated with Down syndrome. In the year 2000, an international team of scientists successfully identified and catalogued each of the approximately 329 genes on chromosome 21. This accomplishment opened the door to great advances in Down syndrome research.

Trisomy 21 (Nondisjunction) Down syndrome is usually caused by an error in cell division called “nondisjunction.” Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called trisomy 21. Mosaicism Mosaicism (or mosaic Down syndrome) is diagnosed when there is a mixture of two types of cells, some containing the usual 46 chromosomes and some containing 47. Those cells with 47 chromosomes contain an extra chromosome 21. Mosaicism is the least common form of Down syndrome and accounts for only about 2% of all cases of Down syndrome (Facts about Down syndrome, 2021). Research has indicated that individuals with mosaic Down syndrome may have fewer characteristics of Down syndrome than those with other types of Down syndrome. However, broad generalizations are not possible due to the wide range of abilities people with Down syndrome possess. Translocation In translocation, which accounts for about 3% of cases of Down syndrome, the total number of chromosomes in the cells remains 46; however, an additional full or partial copy of chromosome 21 attaches to another chromosome, usually chromosome 14 (Facts and Down syndrome, 2021). The presence of the extra full or partial chromosome 21 causes the characteristics of Down syndrome.

Individuals with Down syndrome are becoming increasingly integrated into society and community organizations, such as school, health care systems, work forces, and social and recreational activities. Individuals with Down syndrome possess varying degrees of cognitive delays, from very mild to severe. Most people with Down syndrome have cognitive delays that are mild to moderate. Due to advances in medical technology, individuals with Down syndrome are living longer than ever before. In 1910, children with Down syndrome were expected to survive to age nine. With the discovery of antibiotics, the average survival age increased to 19 or 20. Now, with recent advancements in clinical treatment, most particularly corrective heart surgeries, as many as 80% of adults with Down syndrome reach age 60, and many live even longer. More and more Americans are interacting with individuals with Down syndrome, increasing the need for widespread public education and acceptance.

Contact your local Social Security office to find out if you qualify for financial assistance and/or Medicaid. If the child is under 18, qualification is based on the family’s income. Even if you know you will not qualify, it is important that you apply and receive your SSI denial letter. This is needed for various other applications including TEFRA. Call 1-800-772-1213 or visit www.ssa.gov/applyfordisability.

Special Olympics Oklahoma provides a year-round program of sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities. For more information call 918-481-1234 or visit www.sook.org.

The Oklahoma Family Network (OFN) informs and connects individuals with special health care needs and disabilities, their families, and professionals to services and support in their communities.Visit www.oklahomafamilynetwork.org for more information.

Have you placed your child on the waiting list for the Little Light House? The Little Light House is a Christian developmental center for children ages 0-6. The current wait list is between 2-3 years so don’t wait! The Little Light House provides highly individualized educational and therapeutic services to children of all disabilities. And it’s tuition free! Contact the Little Light House at 918-664-6746. For more information, visit www.littlelighthouse.org.

The Arc of Oklahoma is 501(c)(3) nonprofit and state chapter of The Arc of the United States, the largest national community-based organization advocating for and with people with intellectual and developmental disabilities (IDD) and serving them and their families. Call 918-582-8272, email info@TheArcOK.org, or visit https://thearcok.org.

SoonerStart is Oklahoma’s early intervention program designed to meet the needs of infants and toddlers with disabilities and developmental delays. Contact SoonerStart to set up a time where they can come to your house to evaluate the therapy needs of your child. It is a service that offers occupational therapy, physical therapy and speech therapy in your home at no charge. Early intervention is important! Call 1-800-426-2747 or visit www.okdhs.org for more information. https://oklahoma.gov/health/services/children-family-health/sooner-start.html

Call 918-560-4700 or 1-800-522-1075 or visit www.okdhs.org. Family Assistance Program Family Support Assistance payments – Call DHS to receive a form to apply for this program. It is a cash payment program for families who are caring for children under 18 at home. In this program, families can receive payments of $250-$400 per month depending on the number of children with disabilities in the home. Families who meet the income eligibility may choose this cash payment in lieu of the Medicaid Home and Community-Based Waiver (HCBW) Services. This program is funded through state dollars. In Home Supports Waiver (also known as Waivered Services or DDS Services) Contact the Department of Human Services (DHS) to place your child on the waivered services waiting list. Your child is not eligible for services until the age of three, but the waiting list is long, so it is important to get on the waiting list as soon as possible. In-Home Supports Waiver allow individuals and families to select services necessary for each individual to remain in his or her own home or family home. Eligible children, ages 3 through 17, may receive up to $12, 360 of services per year through the IHSW – children. Eligible adults, 18 years or older, may receive up to $18,540 of services per year through the IHSW – Adult. These waivers are not cash payment programs and all services are provided through agencies contracting with the Oklahoma Health Care Authority. TEFRA The Tax Equity and Fiscal Responsibility Act (TEFRA) of 1992 allows children with physical or mental disabilities, who would not normally be eligible for State Supplemental Income (SSI) benefits because of their parent’s income or resources, to become eligible for SoonerCare (Medicaid). If you have primary insurance, this acts as a secondary insurance and allows you to have medical, dental coverage as well as occupational, speech and physical therapy at no cost if your medical provider accepts Medicaid.

Sooner SUCCESS offers community based services available to any children under the age of 21 with special needs. They connect families to information and services in the community that will meet their child’s unique needs. Call 1-877-441-0434 or visit http://soonersuccess.ouhsc.edu/ for more information.