Monday, May 24, 2010

The Blessings of Down Syndrome By Lori Daniell

A vast array of negative emotions and feelings are encountered by parents and family members when learning of a diagnosis of Down Syndrome. Shock, denial and anger, blame and guilt, sadness and shame are experienced before acceptance. Many parents openly admit that their level of dismay was exacerbated by preconceived ideas of family life as well as career oriented goals for their child. Their situation is typically viewed as a loss of an ideal life. Once the stages of grief are experienced, there is acceptance of the loss. It is at this stage of the grieving process where the new reality is accepted as the state of normalcy.

During this profound period, hope is beginning to be sensed where it would previously had felt unattainable. Particularly now is when, as a result of a new state of normalcy, deeper questions are pondered in terms of the meaning of life, and the renewed sense of spirituality is often encountered. Ultimately, the forgiveness of self and letting go of the burden of being responsible for this situation unleashes the parents and loved ones of a child with Down Syndrome. This launches them into a condition where life is viewed through the eyes of the child and the beauty of a bond is begun. A new feeling of wonder is experienced and a lightening of their previously heavy hearts are experienced in contrast. The advancement of the soul is undeniable.

There is difficulty in the attempt to prove the causal relationship that exists between a person with Down Syndrome and their effect on those surrounding them. The struggle is defined by the very nature of the scope of concept. No litmus test exists for definitive determination. The true answers lie in the hearts and souls of the people who have been provided with this gift from Spirit.

Down Syndrome being a chromosomal abnormality is by no means a condition that is desired. Because society has a set of rules by which to define what is considered normal, struggle is naturally encountered in order to attempt to rationalize how having a child with Down Syndrome could even be possible for them. This is a deep wound that can catapult the parents into identifying with their Warrior Archetypes. Soon, it is learned that the struggle has a purpose. Tragedy on any level opens a philosophical door to seek greater understanding. Existentialism is innately delved into. It perhaps is possible that in order to cope with the shock that ensues as a result of a Down Syndrome diagnosis, one is somewhat forced to disassociate from their past mores and view life through a new set of eyes for the sake of pure survival. Therein one could argue, is the gift.

The fact that people with Down Syndrome have cognitive impairment can be seen both as a miracle and a call for further research. To be clear however it needs to be indicated that there are various degrees of impairment. The miraculous aspect is that this population has been given the blessing of perceiving their world in a manner of delight and bliss while changing the dynamics of the people who love them. In addition, this population generally does not have the verbal ability to explain how they view life, therefore we can only deduce this information based upon their behaviors, actions and reactions.

In terms of perceiving people with Down Syndrome as a gift from Spirit, improved cognitive therapies for the sake of their ability to describe and communicate their perspectives would be advantageous, to the extent that it did not tamper with the genuineness of the person while it sought to improve her quality of life.

This enchanting population of people have incredible volumes to offer in terms of life lessons and perspectives. May we all shine brilliantly because of their teachings.

Wednesday, May 19, 2010

What Are Your Chances of Having a Baby With Down Syndrome? By Cynthia Koelker

What is the chance that my baby will have Down syndrome? If you're asking the question, you're probably pregnant or considering pregnancy.

Most people have seen a child with Down syndrome - it's fairly easily to recognize. What people fear isn't so much the physical problems these children exhibit, but the mental retardation caused by the extra chromosome #21.

The incidence of Down syndrome increases with the age of the mother. Although alcohol and tobacco use have been linked to other conditions, they are not thought to increase the risk of Down syndrome. According to the Merck Manual, a time-honored medical reference, the overall risk is 1 in 800. However, for babies born to 20-year-old mothers the risk is only 1 in 2000 births. By age 35 the risk rises to 1/365, and at age 40 is about 1%.

The answer is a bit more complicated than this, however, because not all Down syndrome has the same genetic cause. Most cases (about 95%) are due to a second copy of a complete chromosome 21. The other 5% of cases are due to an extra fragment of chromosome 21 getting stuck on a different chromosome (called a translocation).

The genetic cause can be determined by examining the chromosomes of the child and/or parents. If the mother carries a translocation, the risk for having a child with Down syndrome is about 1 in 10. If the father carries the abnormal chromosome, the risk is about 1 in 20. Chromosome testing would not normally be performed on parents unless they've already had one child with Down syndrome.

Pregnant women can be tested to see if their baby is likely to have Down syndrome, but this testing may or may not be covered by your insurance. Because testing is expensive (hundreds of dollars), not entirely accurate, and potentially dangerous to the unborn child, you should talk to your doctor about reasons to perform the test and reasons not to.

Friday, May 14, 2010

Early Attention is Required With Children With Down Syndrome By Mike Selvon

Parents of children with Down syndrome are flooded with a barrage of emotions. They may experience disappointment, anger, grief, frustration, fear and anxiety. Mothers over the age 35, who have a higher chance of having a baby with Down syndrome, may experience guilt or self-blame.

These feelings naturally come up, which is why establishing a support network is important for new parents. Talking with others who've been through the same challenges will offer inspiration and ensure the best possible upbringing for the developmentally disabled child.

Children with this chromosomal disorder will have tribulations early on. Parents should be aware of the special-care needs for babies with Down syndrome as early as possible, to prepare themselves for the challenges that lie ahead. Some babies require medication to address a heart defect, while others require physical therapy sessions to help develop better muscle tone and coordination.

Some syndrome babies have a difficult time learning to breastfeed at first, which is sometimes related to stomach or intestinal blockages. Eye, ear, nose, throat and thyroid problems are not uncommon, as is late teething. The main thing to keep in mind is that the baby will eventually get there, but patience and offering loving support are critical to the child's development.

The educational needs for children with Down syndrome vary, depending on the degree of mental retardation. Early intervention and skill assessment is the key to relating to the child on terms he or she can relate with. For example, often concrete concepts are more easily understood than abstract ideas. Step-by-step teaching and providing consistent feedback are two techniques that can help the developmentally disabled.

In the past, Down syndrome children went to separate schools or were home-schooled. Now, the mainstreaming of these children is proving effective at decreasing the emotional gap between children with this chromosomal disorder and those without. In countries like Denmark or Germany, a two-teacher approach allows these kids to observe and be exposed to others, while focusing on their special needs.

There are certain health risks for children with Down syndrome. About half of all Down syndrome babies are born with congenital heart defects and 60% suffer an eye disease, including cataracts (15%) and the need for corrective glasses or contact lenses (50%). Nearly 75% suffer hearing loss, sleep apnea and persistent ear infections. Other problems include thyroid disease (15%), gastrointestinal atresias (12%) and acquired hip dislocation (6%).

Less than 1% of all cases report leukemia or Hirschsprung disease. Over time, adults with Down syndrome may suffer respiratory infections, heart disease, surgery for bowel obstruction or cataracts, hearing loss, epilepsy and osteoarthritis.

Sunday, May 9, 2010

People With Down Syndrome Are Not Severely Handicapped By Mike Selvon

Until recently, people with Down syndrome were considered severely handicapped. Yet with better advocacy and pushes toward educational integration, adults with Down syndrome are getting married, working jobs, living independently and living well into their fifties.

Few people can forget the lovable character "Corky" on the hit TV series "Life Goes On," and how he constantly challenged stereotypes and unfair assumptions about those with such a disability. Advances in medicine, social normalization and the expansion of programs to help the disabled are credited with what is sometimes referred to as "the new generation" of Down syndrome.

People who are afflicted with this disability encounter many physical challenges that others do not. Their motor skill development is slow, so they will learn to breastfeed, roll over, walk and talk, as well as teeth later than other children their age. This can be frustrating for both the Down syndrome child and the parents who are repeatedly confronted with their own mistaken expectations.

Another physical risk is, of course, the associated health problems. Many babies with Down syndrome undergo heart, ear and eye surgeries before one year of age. There are later risks of epilepsy, obesity, heart disease, ear infections, thyroid disease, throat infections, pneumonia and osteoarthritis.

Everyday activities can be difficult for people with Down syndrome to cope with. Many disabled children are naturally empathetic and in tune with their parents emotions and they sense the frustration or stress the parents sometimes experience. The extra attention expected of parents is sometimes exhausting and overwhelming, so psychologists recommend that parents attend Down syndrome support meetings to talk to other parents who have Down syndrome children and learn new techniques for raising their disabled child.

One of the things that people with Down syndrome still struggle with is public misperceptions about their condition. For instance, they are often stereotyped as being always happy or "out of it," when in reality Down syndrome children experience a full range of emotions and have quite unique personality traits. However, there are certain coping strategies that work better. For example, routine and order help them control their lives better.

Additionally, self-talk helps them communicate, express themselves and make sense of what's going on. People with learning disabilities generally rebuke change, which has led to the misperception that they are stubborn by nature. Perhaps they are simply trying to understand what's going on and maintain control in their lives. Perhaps they just need a little extra patience from those around them.

Tuesday, May 4, 2010

An Overview of Down Syndrome By Connie Limon

Down syndrome is a set of mental and physical symptoms resulting from an extra copy of Chromosome 21. A normal fertilized egg has 23 pairs of chromosomes. Most people with Down syndrome will have an extra copy of Chromosome 21. This extra copy changes the body's and brain's normal development.

The symptoms range from mild to severe. All people with Down syndrome have some physical and mental features in common.

In general, mental development and physical development are slower in people with Down syndrome. People with this syndrome usually have IQs that fall in the mild to moderate range of mental retardation. There may also be delayed language development and slow motor development.

Common physical signs include:

o Flat face with an upward slant to the eye

o Short neck

o Abnormally shaped ears

o Deep crease in the palm of the hand

o White spots on the iris of the eye

o Poor muscle tone

o Loose ligaments

o Small hands and feet

A variety of other health conditions often seen in people with Down syndrome include:

o Congenital heart disease

o Hearing deficits

o Intestinal problems

o Celiac disease

o Eye problems

o Thyroid dysfunctions

o Skeletal problems

o Dementia

Are there effective treatments for Down syndrome?

o It is not a condition that can be cured

o Early intervention can help many people with live more productive lives

o Speech therapy is often beneficial

o Occupational therapy and exercises for gross and fine motor skills is helpful

o Special education and attention in school is helpful

Are there women at a higher risk to deliver Down syndrome babies?

o As a woman gets older, the chance of having a baby with the condition increases

o Because more younger women have babies, most babies with Down syndrome are born to women under age 35

Many health care providers recommend women over age 35 to have prenatal testing for the condition.

Other high risk situations include:

o Parents who have already had a baby with Down syndrome or who have abnormalities in their own chromosome 21

Is there a test to confirm the condition?

o Once the baby is born, a blood test can confirm whether or not the baby has Down syndrome

For more information:

You can receive a 20-page brochure entitled "Facts about Down Syndrome," in PDF form online at the National Institute of Child Health and Human Development web site or in print by writing to:

National Institute of Child Health and Human Development, NIH, DHHS (1997)

Facts About Down Syndrome (97-3402)

Government Printing Office

Washington, DC

Source: National Institute of Child health and Human Development