During pregnancy, the number one concern of parents is the health of their unborn child. They do all they can to ensure a healthy pregnancy, normal delivery and a healthy newborn. There are times, however, that no matter what parents do, their child will not be healthy. A genetic disorder, commonly known as Down Syndrome, strikes one out of every 700 to 800 births. This disorder occurs at conception and is not the result of anything the expectant mother did or didn’t do. It just happens, and even the most astute researchers are unable to explain exactly why.
Down Syndrome occurs when three copies of Chromosome 21 instead of the intended two, thus the reason why it is also known as Trisomy 21. Down Syndrome causes lifelong mental and developmental delays, with each level of such delays varying from person to person.
As with Trisomy 18, the subject of a previous article, education, understanding and early intervention can make a life-long and positive difference in children with Down Syndrome.
Children born with Down Syndrome are more likely to also have heart problems, hearing problems, thyroid problems and Alzheimer’s. However, the key words here are “more likely.” If your child is born with Down Syndrome it does not automatically mean your child will have these other medical issues. But if they are, treatments for these medical conditions are very advanced today. Most medical problems experienced by those with Down Syndrome are very treatable.
Years and years ago, it was common for children born with Down Syndrome to be placed in institutions, where they received minimal medical care, if any at all. Certainly they received no education and very little social interaction. (This was also true of children who were born deaf and/or blind.)Their life expectancy was about age 25.
Today, many people with Down Syndrome go to high school and become active members of clubs and organizations. Many go on to complete college. They possess talents that people without Down Syndrome posses, as we’ve seen several actors on stage and screen with Down Syndrome. They are athletes, musicians, and volunteers. They hold down jobs and maintain careers. They are contributing members of society. They now have a life expectancy of 60-plus years.
Over the years, much has been learned about this genetic disorder. One of the biggest lessons learned is that a loving and encouraging home atmosphere can be directly linked to a child with Down Syndrome achieving much success in their lives.
Early intervention is vital. As with all children, the early years are a time of rapid development mentally and emotionally. So much learning is packed in to the first few years of life because of all the things to explore with a baby’s eyes, hands and mouth. Children with Down Syndrome often experience delays, so assisting in their different areas of development should start as soon after birth as possible. They certainly will achieve milestones just as all children do, it will simply take longer. Fortunately, we have the Individuals with Disabilities Education Act, which requires that children who qualify receive early intervention from the state. This Act ensures that children with Down Syndrome receive the therapy, activities and other services they need.
Because children with Down Syndrome have low/weak muscle tone, part of Early Intervention is specific exercises designed to help children with milestones such as holding their head up, sitting up independently, and learning to grasp items such as rattles and toys. Other therapies include speech therapy as well as assisting with cognitive and auditory skills.
Throughout the Early Intervention process, parents gain knowledge and information that they can take home with them, allowing them to be active participants in helping their child develop. In Early Intervention groups, parents will also find a network of other parents with similar experiences. Within the network, parents can support and encourage each other and share stories of their personal experiences as a parent of a child with Down Syndrome.
As with each and every one of us, the life of a person with Down Syndrome is a learning process. We all learn as we go, and truly never stop learning. This is the same with Down Syndrome, it just may take them a bit longer to learn. But given the right developmental tools and assistance, coupled with a loving and encouraging home, people with Down Syndrome will learn just as much as we do throughout our lives, and some will learn even more.
It’s important that as the parents of a child with Down Syndrome, you develop your own little village of people, your own team, you assist you and your child throughout your journey. This village should include doctors, your family, educators, therapists, specialists, neighbors and your church family if you have one. Within your village should be those who can provide respite care for you, because every parent needs breaks; time alone with your partner, time to rest and relax, time to get your errands done, time to simply recharge your batteries. Never be shy about asking for help from those within your village.
I have a family member with Down Syndrome. When she was an infant, doctors said she would have heart problems and that she should learn sign language right away because she was probably deaf. Many “hints” were dropped that time seeking an education for this child would most likely be wasted. Today, that little family member is almost 30. There are no serious heart problems and no need for sign language. She can hear just fine. Although not high functioning enough to live independently, she is educated. She is loving and kind, has actively participated in Special Olympics, and is one of the best joke-tellers I’ve ever met. She is a blessing.
For more information on Down Syndrome, visit the National Association for Down Syndrome at nads.org, the National Down Syndrome Society at ndss.org, or the Mayo Clinic at mayoclinic.org and search Down Syndrome. Also seek out local resources by visiting your local library and contacting your local health department.