Living With Down Syndrome: A Personal Story

Down syndrome is viewed by many as a disability, and therefore those who are born with it may automatically be assumed to be dependent, and unable to live a so-called “typical” life. If your child or relative is living with Down syndrome, Homewatch CareGivers encourages you to foster independence — because it’s likely they’re capable of almost everything anyone else is. With the proper developmental, educational and lifestyle support, your loved one — and those who care for them — can lead a fulfilling life.

Addressing Health & Lifestyle Challenges

Trisomy 21, or Down syndrome, occurs when a baby is born with three copies of chromosome 21, instead of two. The extra chromosome results in a range of physical characteristics and developmental differences — all of which are widely variable from person to person. According to the Mile High Down Syndrome Association, one out of every 733 live births will result in a baby born with Down syndrome, making this genetic condition the most frequently occurring chromosomal abnormality.

When a baby is born with Down syndrome, there is an increased likelihood that medical issues will be present. “Health issues are fairly common in kids with Down syndrome,” says Mac Macsovits, Executive Director of Mile High Down Syndrome Association. “The good news is that the vast majority of health-related issues are treatable through modern medicine.”

Parents of Down syndrome children should know what health problems they may face, and be prepared to provide the best health care possible as necessary. Heart defects, thyroid issues, diabetes and low muscle tone are some of the most frequent health problems that occur, although others, such as increased risk for leukemia, sleep apnea, Celiac disease, and seizures are cited by the Mile High Down Syndrome Association.

Enduring multiple health problems can be exhausting — on both the person living with Down syndrome and their entire family. Consider finding support through faith, professional counseling, or reaching out to community resources and other families living with Down syndrome.

Another common issue those living with Down syndrome face is obesity. Ensuring that your loved one eats healthy foods in healthy portions is essential to maintaining optimal weight and health, as is developing an exercise routine. To engage your loved one with Down syndrome, make this healthy lifestyle a family affair — take family walks through a local park frequently throughout the week, or try new recipes to make healthy cooking and eating fun. Recreational activities, such as swimming and dancing classes, are also available for children with special needs, and can provide another opportunity for fitness.

Addressing Developmental & Learning Challenges

Babies and children who are living with Down syndrome oftentimes experience developmental delays. Certain milestones, such as crawling, walking, and the development of motor skills may be set back due to low muscle tone and cognitive abilities. Speech may also progress at a slower rate, and speech difficulties, such as stuttering can appear. In order to set a child with Down syndrome up for developmental success, a family needs to be fully committed to long-term physical and speech therapies, which should begin as soon as possible.

Children with Down syndrome will also inevitably face intellectual challenges. Due to the chromosomal abnormality present, IQ is affected, which can make learning difficult. Though most people with Down syndrome won’t develop an education level consistent with their chronological age, they are still completely capable of excelling in certain areas.

Many with Down syndrome are able to attend public schools and classes with other children, and may just need special attention in certain areas of study. “People living with Down syndrome range from moderately to severely delayed cognitively. With that being said, all people with Down syndrome are capable of learning,” noted Macsovits. “The best course of action when looking to help a person with Down syndrome learn a new skill or trade is to approach the experience with patience in mind.

Down syndrome does not exclude people from learning, it simply means they learn differently.” Families living with Down syndrome should never give up hope, and should be persistent in helping their loved one achieve the highest level of intellect possible.

Addressing Social & Autonomy Challenges

Although those living with Down syndrome may experience feelings of being different from most of their peers, socialization is imperative to thriving. “People living with Down syndrome face many challenges from a social perspective. Many of these challenges however, are similar to those faced by their typical peers,” said Macsovits. Encouraging your loved one to make friends in any social situation is important, and there are plenty of community programs and social groups that are a great way for them to meet others.

“Treat them as the individuals that they are. Recognize that as with any person, they will have strengths and weaknesses, likes and dislikes,” noted Macsovits. “By creating a warm and welcoming environment for your child to learn and grow in, and with support and resources, any child will learn self-esteem and value.” It’s also important to ” … applaud their efforts as they strive for independence and empowerment,” added Macsovits.

Having a sense of self-worth, self-esteem and self-confidence will provide the space for your loved one who’s living with Down syndrome to experience a fulfilled, happy life.

More about Mac Macsovits

After the birth of his first son, Guion, Mac Macsovits and his wife, Rebecca, learned that Guion had Down syndrome. Mac then decided to concentrate on learning more about his new son and the world of Down syndrome. He began volunteering for Special Olympics Colorado, which eventually led to a paid position as the Director of Development. In 2009, Mac formally joined Mile High Down Syndrome Association as the second Executive Director. Currently, Mac serves on the board for Down Syndrome Affiliates in Action (a national Down syndrome non-profit).

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