No, I'm Not Carrying Around Extra Chromosomes: Busting the Myths of Down Syndrome
Apr 16 '04 (Updated Apr 19 '04)
The Bottom Line Children with Down Syndrome, or any disability, are children first. They are defined by who they are, not the challenges they face.
I am the mother of 2 sons. My oldest son has blue eyes and curly hair. He loves to help me with cooking and laundry. He loves reading stories and he is obsessed with trains. My youngest son has hazel eyes like mine, and straight hair, also like mine. He also loves reading stories, playing with his big brother, swinging on the swing and playing in the water. They both eat like horses and have beautiful smiles and contagious laughs. They can both be easy going, or incredibly stubborn, depending on their moods. They are both so much alike. One difference is that one of them has Down Syndrome.
"Ohhhhhh" I can hear it now. That slow, lilting, I'm-so-sorry-to-hear-that "ohhh." It's the reaction of strangers or new acquaintances when they hear that my son has a characteristic that makes him different. It's not their fault. They don't realize they are even doing it. It's simply the natural reaction of someone who doesn't understand. I've found that there is great deal more misunderstanding about Down syndrome than I would expect. So I want to address some of the misunderstandings and myths I have encountered, and maybe try to shed some light on this issue, for those who are interested.
MYTH: It's okay to call them "Down's" kids"
First, let me clarify that it is called Down, not Down's, syndrome. It may seem like an insignificant thing, but this small grammatical error represents to many of us the greater ignorance out there. When, in conversation, someone says "Down's" or "Downs kids," most of the time, I find they have no real knowledge of the condition. Conversely, those who pronounce it correctly, I've found, have some experience and knowledge, and most importantly, UNDERSTANDING of my son and his struggles. It is called Down syndrome after Dr. John Langdon Down, who first described a common set of symptoms in 1866. He himself did not have the condition. He does not own it. He was simply the first to recognize a common group of characteristics. The children who are born with it are not "Down babies" or "Down kids." They are children, like all other children. They have blue eyes, or brown eyes. They have dark hair, blonde hair, curly hair. They love to run and play and swim. They are like any other kids, with an extra set of characteristics. They are not defined by their condition.
MYTH: Down syndrome is caused by the mother
The title of this piece comes from a comment I received near the end of my pregnancy. I was asked if I had used up my extra chromosomes on my son. I know other mothers who have been on the receiving end of similar, or worse comments. Ninety-five percent of all cases of Down Syndrome are caused by nondisjunction, or faulty cell division that occurs prior to conception. We all have 46 chromosomes, or 23 pairs. Before the egg and sperm come together to form a new embryo, they each must shed half of the chromosomes they carry. The egg and sperm then come together to form an embryo with 46 chromosomes. When nondisjunction occurs, either the egg or sperm fails to shed off some or all of chromosome 21, causing the new embryo to have 3, rather than 2 of that particular chromosome, resulting in Trisomy 21, or Down syndrome. Research does suggest that it is more likely that nodisjunction occurs in the egg, but it can also happen in the sperm. In either case, there is no known cause. Nothing a parent does, eats, or exposes oneself to has any bearing on the nondisjunction event. It is, for all intents and purposes, a random act of nature.
MYTH: Most babies with Down syndrome are born to older mothers.
Many new young moms are shocked to find out their baby has DS. There is a misconception that because risk increases with age then DS doesn't happen to younger moms. The fact is that 80 percent of babies born with Down syndrome are born to moms under the age of 35. The incidence is higher among mothers over 35, but more babies are born to mother under 35. I'll try to clarify these seemingly incongruous facts. Simply put, the ratio of DS births to number of women giving birth at that age becomes smaller as age increases, because fewer women have babies as they get older. Here's an analogy: One in every 100 women in group A will have a baby with orange eyes. Three out of every hundred women in group B will have babies with orange eyes. However, in group A, 1,000 total women gave birth, and in group B, 200 total women gave birth. Group A will have 10 babies with orange eyes, while group B will have 6 babies with orange eyes. Group A give birth to the majority of babies with orange eyes while the incidence is higher among group B.
MYTH: Babies with DS are born with bigger tongues
There is a common misconception that people with DS have large tongues, which hang out and cause speech impediments. This is inaccurate. One of the common traits of DS is hypotonia, or low muscle tone. This lack of muscle tone, or strength is what causes tongues to fall forward and speech to sound slurred. The oral muscles simply don't hold the tongue in place. Fortunately, today babies can begin to receive oral motor therapy and speech therapy right away to help strengthen those muscles and improve speech.
MYTH: All people with DS are severely retarded
There is a wide range of IQs among people with DS. Many are only mildly retarded and are very high functioning. Additionally, there are far more educational opportunities available to children with DS today than even 20 years ago. Early intervention services are available from birth to age three, which include classes, physical therapy, speech and oral motor therapy, as well as classes for parents to help them understand the development and challenges of DS. Once they reach school age, children with DS can be mainstreamed, meaning, with extra support from an aide, they can function in the regular classroom with other "typical" kids. Adults with DS can and do go to college, become employed and lead independent lives.
MYTH: Mental Retardation is the only thing to worry about
The first thing people think about when they hear about Down syndrome is the cognitive disabilities. Unfortunately, DS also brings a number of health risks. Among the risks they face:
* Roughly half of all babies born with DS are born with heart defects, the most common being Ventricular Septal Defects (VSD), Atrial Septal defects(ASD), and Persistant Ductus Arteriosis(PDA).
* Leukemia occurs in children with DS at a rate roughly 20 times greater than in the typical population.
* Children with DS have lower immune capabilities, due to white blood cell defects.
* Babies with DS are more likely to have moderate to severe problems with constipation.
* Reflux in babies with DS takes much longer to treat due to the low muscle tone.
* Adults with DS are more likely to develop Alzheimer's, and at a younger age.
This can seem overwhelming and scary, but we are fortunate that the medical advances in the last 20 years have made most of these issues very treatable. My own son was born with four heart defects, and had open-heart surgery at 7 months to repair them. We are currently managing his reflux with medication.
MYTH: People with DS lead sheltered lives
As I mentioned earlier, babies with DS have access to early interventions to help them get the best start. They have opportunities to be educated in mainstream classrooms, and to participate in sports with typical kids, as well as through Special Olympics. Adults with DS can pursue education and careers. They form meaningful relationships and many marry.
If you take away only one thing from reading this piece, let it be this: Children with DS are children. They grow and change and love and feel and have hopes and dreams, just like all children. They may face challenges in this life that are not the same challenges others face, but in the end, those challenges do not make them that different. They will learn and achieve, and make a difference in this world, like all children. Children with DS just do these things at their own pace. As for me, I have dreams for my sons, just like all parents. I am saving for their college education. I will encourage them to follow their passions and become whatever they want. I will teach them how to be caring, loving individuals, and hope that they will find someone wonderful to share their lives with when they are grown. I want them to live lives filled with joy, meaning and fulfillment. All of these things are possible. When it comes to the things that matter most, my 2 sons are exactly the same.
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Epinions.com ID:
bruinmom
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Location: Bay Area, California
Reviews written: 4
Trusted by: 2 members
About Me:
Former First grade teacher. Now a SAHM to 2 beautiful boys.
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