Tips for Parents of Children With Down Syndrome: Receiving the News, and What Comes Next

Tips for Parents of Children With Down Syndrome: Receiving the News, and What Comes Next
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People with Down syndrome have three chromosomes in the 21st set, rather than the usual two. Due to this extra chromosome, the condition is also referred to as “trisomy 21” in the medical community

The only known factor contributing to Down syndrome is maternal age. Although the odds of having a child with Down Syndrome increase with the mother’s age, there are many infants with Down syndrome born to young mothers each year.

In fact, there are more mothers under the age of 35 having babies with Down syndrome each year than there are mothers over the age of 35. This is simply because many more women under 35 have babies each year than over 35. Check the Centers for Disease Control for current statistics.

Some common misconceptions are that Down syndrome is caused by heredity, or use of drugs and alcohol during pregnancy. There is a type of Down syndrome that can be inherited, but it is responsible for less than three percent of all cases. Studies have proven that Down syndrome isn’t related to use of drugs or alcohol. Infants exposed to alcohol before birth are diagnosed with Fetal Alcohol Syndrome, an unrelated condition.

Receiving the Diagnosis

Parents who have recently learned their child has Down syndrome will need time to grieve. Losing hope that a child will be healthy and free from disability is a significant loss. Enlist the help of family, friends, and professionals who will be supportive during the grieving process. Learn more about Down syndrome by reading books such as, “Babies with Down Syndrome: A New Parents Guide,” one of many books in the Down syndrome series published by Woodbine House.

It may also help to talk to professionals such as doctors and social workers. There are many online parent support groups available. The largest of these support groups, “UpsNDowns,” offers support and knowledgeable advice from other parents raising children with Down syndrome. New parents might also find the blogs of other parents helpful. A collection of these blogs are available at the Gifts website.

Parenting

Once the grieving process is complete, it is time to move on to parenting. Children with Down syndrome are capable of many accomplishments and have a lot of potential. Focus on their strengths rather than their weaknesses, and enjoy parenting. The child will learn, grow and meet developmental milestones. They may do this a little slower than their peers, but they will do it in their own time. Finding local support groups offers additional support for parents. It also allows children with Down syndrome to meet and form relationships with peers who have the same disability. The special olympics is another great resource for children to network.

Medical Care

Securing quality medical care should be done as early as possible. Children with Down syndrome frequently experience life-threatening medical complications. Find a physician experienced with Down syndrome and the medical risks associated with it. In addition to finding an experienced family doctor, there are Down syndrome clinics available world-wide that provide screenings for various medical conditions to which children with Down syndrome are prone. The specialists at these children’s hospitals often have a vast knowledge and can make referrals to physicians and therapists in your local area.

Discipline

One of the most challenging aspects of parenting a child with Down syndrome is disciplining them. Children with Down syndrome need discipline based on their developmental age. For example, an eight-year-old with Down syndrome that is functioning at a four-year-old level should receive discipline based on what is expected of a four-year-old. It isn’t in the best interest of the child to expect behavior above or below the child’s capabilities. Showing developmentally appropriate discipline teaches the child to respect themselves and others.

A behavioral psychologist can be located at the clinics discussed above and can offer helpful advice on specific behavior challenges. They can also offer advice on development, such as toilet training or puberty. At the school level, chronic problems with behavior can be overcome by requesting a functional behavior assesment. This assesment evaluates the child’s behaviors and offers a structured plan for dealing with them. If behavior at school is a problem for your child with Down syndrome, having the structure and consistency of a behavior plan often helps children to function better at school.

Parenting a child with Down syndrome comes with its own rewards and challenges. Many parents find the process of parenting a child with a disability rewarding in that it allows them to experience personal growth and develop a new understanding of others.

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