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Just another child By Daniel K. Lai Mother seeks normal life for son with Down syndrome To the casual observer, 7-month-old Rustin Lane, at first glance, looks like any normal baby. His big bright eyes light up with excitement when someone calls his name, he smiles when his mom tickles him and he babbles with strangers as if he is holding his own conversation. But his parents, Chris and Troy, know behind that smile Rustin holds a secret he shares with 1-in-733 other children - doctors diagnosed him with Down syndrome. “Rustin came as quite a surprise to us,” Chris Lane said. “Before we had Rustin, I already had a 17-year-old son and my husband had three kids so we thought we were done.” Lane said neither she nor her husband knew Rustin had Down syndrome until after he was born. “When I found out I was pregnant, the doctor offered to perform the amniocentesis, or chorion villus biopsy known as a CVS test, but we didn't want to do that because my husband and I already decided we were going to keep the baby no matter what,” she said. Lane said only hours after Rustin was born a nurse told her the doctor observed characteristics of Down syndrome. “The nurse did not go into great detail but said the doctor did the karyotype test and would send (it) off to the lab to be certain of the diagnosis,” she said. “The preliminary results of the test take three days with the final results in three weeks.” Lane said when she heard the news she and her husband were overcome with emotion. “We were shocked,” she said. “You're just scared because of that fear of the unknown. There are people with this disease everywhere but you don't notice it a lot until it hits home.” Lane's sister, Rochelle Hall-Schwarz, said she remembers comforting her sister at the hospital and drawing her closer to her faith. “Chris asked, ‘Why me?' because she feels that sometimes everything happens to her,” Hall-Schwarz said. “I replied, ‘Chris, it is nothing you did. It's a chromosomal abnormality that just happens. These children's faces may be different but their feelings are the same. They laugh and they cry. Perhaps this child was sent to you for a purpose.' “I believe the Lord chooses certain people to have these special children and he would want parents who have a lot of patience and love to give. He wants this special child's life to be content.” Three weeks later, the doctor confirmed Rustin was positive for Trisomy 21, a positive diagnosis for the disease. “I felt that the Lord felt this is something we could handle, then it shall be,” Hall-Schwarz said. “Every one of the family members was trying to cope and accept the situation in the best way they could. One thing we did know is that we loved Rustin and wanted to provide him with all the love we could. I would find information and send it on to other family members to educate them. “We wanted to be knowledgeable and give baby Rustin the best possible life.” Hall-Schwarz said almost immediately she began researching online for support groups and organizations for her sister, only to meet several obstacles. “I found that financially there is not a lot available for middle class socioeconomic status couples,” she said. “We live in Williamson County, which does not have a lot of advocates or programs (for people) with disabilities that other larger counties have.” Hall-Schwarz said numerous requests to organizations for help, including the “Any Baby Can” program, were denied. “The reply, ‘I am sorry; you live in Williamson County (and) they do not offer that here,' seemed very disappointing,” she said. But Hall-Schwarz continued to pursue options and eventually discovered Bluebonnet Trails Community Mental Health and Mental Retardation Center in Round Rock and the Downs Syndrome Association of Central Texas. “Williamson County has Bluebonnet Trails in Round Rock and most of the time it is hard to get an appointment,” she said. “It was heartbreaking to learn that other counties offer programs and resources but because you live in a certain county you are not eligible to participate. Another thing that I found out is that Down syndrome is not considered a handicap to automatically receive Social Security. In order to qualify for disability one has to be at the poverty level, which most families do not qualify for.” Lane said doctors told her it was very important to start Rustin on therapy. “It's frustrating that everything is in Austin,” she said. “In my opinion, there needs to be more advocacy and awareness in regards to the needs of handicapped children. These children need financial aid plus resources such as occupational therapy, physical therapy and speech therapy and a pediatrician that is knowledgeable about Down syndrome.” Lane said as Taylor grows she hopes specialists who handle mental illness will move into the community. “Right now we're going to Georgetown, Round Rock and Austin, which is hard to do,” she said. “We've really been fortunate our employers are able to understand we need time off some days.” Lane said since joining the DSACT she has met with and made several friends with families who have children with Down syndrome. “The association has been very helpful,” she said. “It's sad a lot of people go on with their everyday life without thinking about the children around them that have disabilities until it hits home.” In conjunction with Down Syndrome Awareness Month in October, the DSACT will host the seventh annual Buddy Walk at Reunion Ranch in Georgetown on Saturday from noon to 5 p.m. to raise money for families.
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