Surviving John

Down syndrome, resulting from the presence of an extra chromosome #21, is the most common genetic disorder that causes mental retardation. Children with Down Syndrome often have upward slanting eyes, unusually shaped ears, broad hands, flattened facial features and a small head. Often, babies with Down syndrome suffer from poor muscle tone, auditory/visual impairments and slow development.

Children with this chromosomal disorder will have tribulations early on. Parents should be aware of the special-care needs for babies with Down syndrome as early as possible, to prepare themselves for the challenges that lie ahead. Some babies require medication to address a heart defect, while others require physical therapy sessions to help develop better muscle tone and coordination. Some syndrome babies have a difficult time learning to breastfeed at first, which is sometimes related to stomach or intestinal blockages. Eye, ear, nose, throat and thyroid problems are not uncommon, as is late teething. The main thing to keep in mind is that the baby will eventually get there, but patience and offering loving support are critical to the child’s development.

Children with Down syndrome often have physical therapy needs as well, but with parental guidance and encouragement, they can learn crucial skills. Babies with Down syndrome can strengthen muscles and improve coordination through directed play. A physical therapist can provide new parents with instructions. Many children learn to eat step-by-step, first hand-fed, then using their fingers, finally learning to use silverware. While learning to dress can take extra time and explanation, the Downs child can learn through practice and repetition. It helps stress the importance of grooming and hygiene by establishing a daily routine, gradually adding new tasks for the child to perform independently. While it seems like a lot of work at first, parents may find they enjoy being a special teacher, and that every small milestone is celebrated. Raising children with this chromosomal disorder encourages parents to embrace the small triumphs in life.

Raising children with Down syndrome can be challenging or worrisome at times, but also ultimately rewarding. Parents need to remain vigilant because a syndrome child may be able to tolerate high degrees of pain before expressing themselves and the first sign of illness might be abnormal behavior. Through the National Down Syndrome Society, parents can be connected with resources to teach themselves how to be more loving, caring, nurturing, stress-free moms and dads. Given the right environment, children born with Down syndrome can develop special abilities in art or music, find hobbies and careers, and really excel in life.

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