Childhood Development Resources for Parents of Children With Down Syndrome

The Centers for Disease Control and Prevention (CDC) reports that approximately 6,000 babies are born with Down syndrome yearly. Children with Down syndrome enjoy longer lifespans than ever before and are increasingly appreciated for being productive members of society. This is likely due to various factors, including better medical care and an increase in available resources for parents and communities. Such resources support parents as they raise children with Down syndrome and help teens with Down syndrome transition into adulthood.

What Is Down Syndrome?

According to the Centers for Disease Control and Prevention (CDC), Down syndrome is a condition in which a person is born with an extra chromosome.

Trisomy 21

Most children with Down syndrome, approximately 93 percent, have this type. This occurs when there is an error in cell division during embryo development. At conception, or right before in the egg or sperm, a pair of 21st chromosomes fail to separate.

As the baby continues to develop, the extra chromosome is replicated throughout every cell in the body.  This type of Down syndrome is usually called Trisomy 21. The National Human Genome Research Institute provides graphics showing errors and replication during cell division.

Mosaic Down Syndrome

Children with Down syndrome that have Mosaic will have a combination of copies of chromosome 21. For example, some cells will have three copies of chromosome 21, while others will have the usual two copies.

This means a child with Down syndrome of this type may have some features similar to other children with Down syndrome while other features look more typical. About 2 percent of children with Down syndrome have this type. Children’s National provides an example of a baby having Mosaic Down syndrome at 75 percent.

Translocation Down Syndrome

This type happens when an extra or extra part of chromosome 21 develops. This part, however, is “trans-located” onto a different chromosome and is not its own chromosome 21. It is separate from the others.

Approximately 3 percent of children with Down syndrome have this type. Brigham and Women’s Hospital state that when a translocation is found in a child, they sometimes examine the parents’ chromosomes. It is then possible to determine if one of the parents is the translocation carrier.

What Causes Down Syndrome?

Down syndrome is the result of an extra chromosome. The reason for the error that causes random cell division, however, is unknown. Researchers currently don’t believe there is any connection to the behavior of either parent or any environmental conditions that cause Down syndrome. What researchers do know is that the extra copy of chromosome 21 comes from the egg in most cases. The extra copy comes from the sperm in less than 5 percent of all cases.

 

Having a baby later in life is one of the most significant factors regarding the likelihood that a child will be born with Down syndrome. According to the National Down Syndrome Society (NDSS), the incidence of having a child with Down syndrome steadily rises along with increasing age. There seems, however, to be a bigger jump in the increase of Down syndrome births between ages 33 and 34. If natural pregnancy occurs at age 45, there is a 1 in 30 chance of giving birth to a child with Down syndrome.

How Is Down Syndrome Diagnosed?

There are basically two types of tests that specialists use to diagnose children with Down syndrome.

 

  1. Screening Tests: Screening tests normally include a combination of ultrasound screening and blood tests. During pregnancy, a physician may look for substances in the blood. An ultrasound technician will look for signs of Down syndrome. This can include looking for fluid developing behind a baby’s neck. These tests are not conclusive and only identify those at higher risk of having a baby with Down syndrome.

 

  1. Diagnostic Tests: A medical professional will usually conduct diagnostic tests after screening tests indicate that there is a likelihood of carrying a child with Down syndrome. The most common diagnostic test is amniocentesis. According to the National Library of Medicine, amniocentesis is a method of obtaining amniotic fluid from the uterus using a needle. It is considered an invasive procedure. The DNA from the cells in the amniotic fluid is then tested. A doctor will normally wait until at least 15 weeks into the pregnancy before completing amniocentesis. 

How Are Children With Down Syndrome Affected?

In 1960, children with Down syndrome did not have very long lifespans. On average, they only lived to 10 years old. By 2007, however, average life expectancy had increased to 47. For parents raising a child with Down syndrome and Down syndrome teens, the child can be affected in several ways. This can include a wide range of mental health, emotional, and physical conditions.

What Medical Issues Can Occur?

Unfortunately, approximately 50 percent of children with Down syndrome are born with a congenital heart defect. Some heart conditions are mild enough to correct themselves as the child grows and develops. Some heart conditions, however, will require surgery. There are several other medical conditions that children with Down syndrome may experience.

 

  • Obstructive Sleep Apnea: Sleep apnea occurs when someone’s breathing temporarily stops while asleep.
  • Hearing Loss: Up to 75 percent of children with Down syndrome may experience hearing loss.
  • Thyroid Conditions: According to Down Syndrome Education, thyroid disorders occur more often in individuals with Down syndrome.
  • Ear Infections: The facial anatomy of many children with Down syndrome makes them more susceptible to ear infections.
  • Vision Problems: Over 60 percent of children with Down syndrome either have eye disease or will likely develop it. About half of all children with Down syndrome must wear glasses. Many may experience eye conditions such as cataracts.

7 Resources for Parents of Children With Down Syndrome

Connecting with professional organizations to receive the best and most up-to-date information and resources when raising a child with Down syndrome is important. The following are seven resources for parents. 

1. National Down Syndrome Congress

National Down Syndrome Congress (NDSC) is an organization that provides resources for parents whether they have just had a baby with Down syndrome, are raising Down syndrome teens, or are helping their child transition into adulthood. 

2. National Down Syndrome Society

The National Down Syndrome Society (NDSS) focuses on three primary areas. These include providing resources and support, engaging communities, and working on policy and advocacy issues. 

3. National Association for Down Syndrome

National Association for Down Syndrome (NADS) states that its mission is to educate the public, address policy issues, provide families with resources, and promote active participation of those with Down syndrome in various capacities. 

4. Down Syndrome Resource Foundation

Down Syndrome Resource Foundation (DSRF) provides individual and group programs. They feature webinars, conferences, and workshops throughout the year. They also offer an online quarterly magazine for parents raising a child with Down syndrome.

5. Global Down Syndrome Foundation

Global Down Syndrome Foundation provides resources relating to research and medical care, advocacy, and current news. They also offer various educational and employment awards. These resources may particularly help those raising Down syndrome teens.

6. Kids With Down Syndrome

Kids With Down Syndrome is a Facebook page where parents and kids can connect and share the joys and trials of life with Down syndrome.

7. Trisomy 21 Resources

The Children’s Hospital of Philadelphia provides many resources for parents raising a child with Down syndrome. These include water and fire safety tips for children with Down syndrome, bullying prevention, stranger safety, and transition tips for Down syndrome teens and young adults beyond high school.

Ways Parents Can Support Themselves

Most parents raising a child with Down syndrome are very conscientious regarding the care and support they give their child. It’s just as important for parents to take care of themselves. Parents can support themselves when raising a child with Down syndrome in several fundamental ways.

 

  • Join a Support Group: It’s important to connect with other families that have children with Down syndrome. If you live in a small town that doesn’t have a group, start one. You can also connect with other parents through online groups and forums. Find a support group in your state.
  • Build a Support System: This includes building a network of people in your personal life you can count on for help and support if needed. Your network may include friends, family, co-workers, and even medical professionals in your community.
  • Get Organized: Whether it’s getting a binder with separate folders or organizing information on a computer app, you’ll want to organize all materials regarding your child. This would include all medical information, health treatments, and educational records. Staying organized helps reduce confusion and stress.
  • Take Time for Yourself: You’ll want to relax and unwind regularly. Occasionally leaving a child with grandparents or another trusted caregiver is okay. A weekend getaway or a day trip with friends will help you relax and rejuvenate.
  • Take Care of Your Health: Parents raising a child with Down syndrome may spend so much time attending to their child’s educational, social, and medical needs that they overlook their own physical and mental health. Parents must stay strong and energetic to provide children with Down syndrome the best care. Make sure to eat right, exercise, and keep all regular doctor check-ups.

Everyday Tips for Raising a Child With Down Syndrome

Little things can make a difference. The following are basic tips to follow whether a parent is raising smaller children with Down syndrome or Down syndrome teens.

 

  • Follow a Routine: Creating and following a daily routine will provide the structure a child needs to feel safe and secure.
  • Shop Around for Doctors: Good doctors and therapists are essential for providing the best care for children with Down syndrome. Don’t be afraid to change doctors if you don’t feel your child is receiving the best care possible.
  • Focus on Strengths: It’s important to focus on what children can do, not what they can’t. Try to support your child’s interests in the arts, academics, athletics, or any hobbies they are passionate about.
  • Promote Good Nutrition: Down syndrome teens and children need to learn good nutritional habits. Those with Down syndrome struggle with obesity at higher rates than the general population.
  • Give Children Some Control: Parents may try to “baby” a child with Down syndrome. But allowing them to make choices and take reasonable risks will build their confidence and help them develop life skills.
  • Use Visuals: Children with Down syndrome often respond better to visual cues than verbal directions. Making a chart that has pictures of the child’s daily routine may be easier for some kids to understand. Using visuals might include drawings, photographs or cutting out pictures from magazines.

 

Whether you’re raising a child with Down syndrome, helping Down syndrome teens, or working with adults with Down syndrome, there are lots of valuable resources available. Children with Down syndrome, more than ever, have the potential to live full and successful lives. 

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