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Girl Tells the World That Down Syndrome Is 'Not Scary'

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Counseling

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down syndrome counseling - Health 24/7 - Web Results

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A child with Down syndrome likely will receive care from a team of health professionals, including, but not limited to, physicians, special educators, speech therapists, occupational therapists, physical therapists, and social workers. All professionals who interact with children with Down syndrome should provide stimulation and encouragement.

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For any counseling you can call (480) 418 7761
But for the most part the most important thing is getting to know your child and understand them to create a really strong bond.

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Treatment

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Down Syndrome cannot be cured. However, early treatment can help many people with Down Syndrome to live productive lives well into adulthood.

Children with Down Syndrome can often benefit from speech therapy, occupational therapy, and exercises to help improve their motor skills. They might also be helped by special education and attention at school.

Some of the medical problems common in people with Down Syndrome, like cataracts, hearing problems, thyroid problems, and seizure disorders, can be also treated or corrected.

It has been suggested that children with Down Syndrome might benefit from medical treatment that includes amino acid supplements and a drug known as Piracetam. Piracetam is a drug that some people believe may improve the ability of the brain to learn and understand. However, there have been no controlled clinical studies with Piracetam to date in the U.S. or elsewhere that show its safety and efficacy.

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Down Syndrome cannot be cured. However, early treatment can help many people with Down Syndrome to live productive lives well into adulthood. Children with Down Syndrome can often benefit from speech therapy, occupational therapy, and exercises to help improve their motor skills. They might also be helped by special education and attention at school.

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Down syndrome cannot be cured however early treatment can help whit people with down syndrome. For example, children with down syndrome can often benefit from speech therapy, occupational therapy, and exercises to help improve their motor skills.

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Some advice for families of down syndrome is have your child play with other kids, make time to read have fun and go out with your child, and support your child in doing tasks on his own.

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Advice

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Down syndrome occurs in one of 691 births, or 6,000 births per year in the U.S., as a result of the presence of an extra chromosome 21 at conception. Although individuals with Down syndrome tend to experience some health problems throughout their lives, recent medical advances have increased their life expectancy. Moreover, parents of children with Down syndrome have access to therapeutic and educational supports through early intervention and the public school system. A recent study published in the American Journal of Medical Genetics demonstrates the positive impact of Down syndrome on families; it found that 79 percent of parents report that their outlook on life was more positive because of their child, 94 percent of siblings report feelings of pride about their sibling with Down syndrome, and 99 percent of people with Down syndrome feel happy with their lives.

Gerald Mahoney, Ph.D., who developed a research-based strategy called Responsive Teaching for improving cognition, behavior, and communication in children with special needs, says: "Parents are far more influential on their children's development than teachers and therapists are. Early developmental learning for all children can occur in the context of any interaction or activity the child is participating in throughout their day. And parents, especially in the first five years, have much more opportunity to interact with their children than do teachers in classrooms or related service specialists." In other words, our role as parents makes a big difference in our children's development.

When our older daughter, Penny, was diagnosed with Down syndrome at birth, it felt daunting to consider the medical, social, educational, and behavioral challenges ahead. I had no idea how much support and encouragement we would receive from family, friends, and the larger community of other parents with kids with Down syndrome, as well as from dedicated and caring therapists, teachers, and medical professionals. Although we have many years to come, and many lessons to learn as we parent Penny and our other children, here are a few pieces of advice that I and other parents of children with Down syndrome can offer.

Learn the Facts First

There's a lot of misinformation about Down syndrome, and for women who have received a prenatal diagnosis and for women who have just given birth and received a diagnosis for their child, accurate and up-to-date information is critical in making decisions and maintaining a realistic and positive attitude for the future. According to Stephanie Meredith, writer of Understanding a Down Syndrome Diagnosis, a booklet that offers current information for medical professionals to deliver a diagnosis, "Most of the misinformation that exists is simply outdated information before early intervention, inclusion, and progressive healthcare were the norm. Since society has begun investing in children with Down syndrome, life expectancy has doubled to about 60, and people with Down syndrome are increasingly completing high school, attending special college programs, and living independently."

The National Down Syndrome Society provides checklists for doctors' visits and other resources for medical intervention and support. But learning the facts about Down syndrome also involves understanding the social and emotional reality that most people with Down syndrome enjoy their lives, and that most families raising children with Down syndrome report positive benefits from their child's presence. Siblings report greater compassion toward others, and parents report a lower divorce rate than the norm.

When understood from both a medical and social perspective, Down syndrome is no longer a negative diagnosis.
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Get in Touch With Other Parents

One of the advantages of a Down syndrome diagnosis, in contrast to rare or undiagnosed conditions and syndromes, is that it is easy to connect with other parents who are raising kids with Down syndrome. Two major national organizations -- the National Down Syndrome Society ( www.ndss.org) and the National Down Syndrome Congress (ndsccenter.org) -- provide support to parents through information and conferences. Inspirational stories are also available in the online book My Great Story ( www.ndss.org/stories). The NDSS advocates on behalf of people with Down syndrome in Congress in order to secure funding for research and social programs that will provide support in school, at home, and in the workplace.

Many local communities have support groups for families. You can find a local group through the affiliates page on the NDSS website or by contacting a social worker in your area. In general, the Internet offers support to parents of children with Down syndrome and with other disabilities. Search "Down syndrome" on Facebook to find groups and connect with others or search for reputable blogs and websites to read personal stories and get advice.
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Organize Relevant Information

A child with Down syndrome is just like any other child, needing doctors' appointments, back-to-school clothes, and rides to birthday parties. Children with Down syndrome, though, have regular visits to medical specialists as well, and their parents meet regularly not only with classroom teachers (or case managers for younger children) but also with therapists, special educators, and other professionals. Developing a system to keep relevant information on hand provides a historical perspective for you and for the doctors and teachers involved, and enables others to care for your child in your absence.

Start keeping track of your child's chronic health, treatments, and education records. Both the Children's Hospital of Philadelphia and the Seattle Children's Hospital offer guides to assembling Care Notebooks, 3-ring binders that include medical and educational information about your child. Their websites offer sample pages for these notebooks and a system to keep track of everything through the years.
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Find Good Doctors, Therapists, and Specialists

Children with Down syndrome have a different set of guidelines for routine tests, and a different set of growth charts. They benefit from regular appointments with specialists and therapists along with visits to a local pediatrician who can perform routine physicals and treat common illnesses.

Mary Pipan, M.D., Clinical Director of The Trisomy 21 Program at the Children's Hospital of Philadelphia, explains the difference it can make to have at least one visit with a developmental pediatrician who specializes in Down syndrome. "A pediatrician who sees many children with Down syndrome has the knowledge to evaluate what areas are important to cover specifically, and how various diagnoses are best evaluated and treated. General pediatricians do not usually have the time to be as thorough as needed, and most pediatricians have only a handful of patients in their practice with Down syndrome, so they don't have the breadth of experience acquired in a dedicated Trisomy 21 program."

The National Down Syndrome Society provides a link to the most up-to-date health care guidelines. In addition, many major children's hospitals have clinics devoted specifically to caring for children with Down syndrome.
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Put Together Your Village

One of the joys of raising children comes from sharing their accomplishments with others. Many friends and family members would love to offer support, encouragement, and delight when your child learns new things.

According to Sue Levine, who conducted a six-year study of individuals with Down syndrome and their parents and siblings, published in American Journal of Medical Genetics, "Having a family member with Down syndrome tends to be an eye-opening and enriching experience. Brothers and sisters told us that they have more patience and acceptance because of their sibling. They treasure the small things in life, having learned important lessons in compassion and responsibility. The majority of parents shared with us that their outlook on life is more positive because of their child with Down syndrome. They affirmed that true success in life is not measured by accomplishments or possessions, but by love and small victories. While there are certainly struggles, as there are with parenting any child, the joys tend to far outweigh the difficulties."

The benefits of knowing a person with Down syndrome can extend beyond the immediate family and into the community. If you and your family have already been involved in a faith community, stay involved. You may have to work with your local church, synagogue, mosque, or other place of worship to create structures and practices that allow your child to be included. The Elizabeth M. Boggs Center on Developmental Disabilities at Robert Wood Johnson Medical School offers a list of resources for congregations and leaders of many different faith communities so that families with children who have disabilities can remain active members.
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Remember Your Child Is a Child First

As soon as Penny was born, I stumbled as I tried to describe her. It seemed somewhat inaccurate to call her my "Down syndrome baby" and yet I didn't have another way to talk about her. I soon discovered "people-first" language, a way of using language to reflect the reality that children with Down syndrome are children first. I learned to refer to Penny as a "baby with Down syndrome" to emphasize her common humanity. This linguistic shift helped me to stop seeing her as a diagnosis and instead to perceive her as a child with particular needs.

Participate in whatever activities you both enjoy. For infants and toddlers, this might include playdates with other friends, joining a local music class or story hour, or just going to the grocery store together. As your child gets older, look for activities designed for children with special needs, often called "adaptive" programs. The Special Olympics runs a Young Athletes program for children ages 2? to 7, provides developmentally appropriate support for your child, and offers an array of informational and educational workshops for parents.
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Prioritize Communication

Low muscle tone and an array of other factors that often contribute to delayed speech and difficulty with articulation can affect kids with Down syndrome. Thankfully, speech therapists offer strategies to strengthen your child's muscles and improve communication. The same muscles are used in both eating and speaking; feeding therapy, a precursor to speech therapy, often begins within the first year of your child's life.

Many children with Down syndrome want to communicate, and will be able to communicate, months or years before their mouths will produce intelligible words. According to Brian Skotko, M.D. ( www.brianskotko.com), a specialist in the Down syndrome Program at Children's Hospital Boston, "Children with Down syndrome have a lot to say and they deserve to be heard and to be listened to, but while we are waiting for the language to set in it is imperative that we give them ways to communicate their wishes and desires. Sign language is one form, and many use picture communication symbols as they get older and other augmentative devices as they become whizzes at technology." These various forms of communication "decrease frustration and behavioral problems while increasing relationships and friendships in those formative years."

For infants and toddlers, baby sign language books, websites, and videos exist to introduce both parents and children to simple sign language. The book Early Communication Skills for Children with Down Syndrome, by Libby Kumin, Ph.D., offers further advice and resources for augmentative communication devices.
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Focus on Your Child's Strengths

Although your child will face physical and developmental challenges, he or she will have a distinct personality and distinct strengths. It can be tempting to focus upon the things your child can't do or isn't interested in, but this type of attention leads to a negative cycle in which both you and your child become frustrated. Another approach for children with special needs is called Responsive Teaching, where parents and caregivers respond to the areas of interest and strength that the child already exhibits, leading to positive emotions and growth on both sides.

Gerald Mahoney, Ph.D., one of the pioneers of the Responsive Teaching approach, explains that when parents are trained to respond well to their child, it leads to increased cognition and communication. Mahoney's program offers 65 different strategies to help parents learn to be responsive. He lists behaviors such as, "reciprocity, a balanced interaction where parent and child are contributing equally and responding to and effecting behavior of the other person; contingency, where the parent focuses on responding quickly and supportively to behaviors their child initiates; shared control or non-directiveness, when parents are moderately directive with their child, which allows him to be more responsive; parental affect, which focuses on parents' expressiveness, enjoyment, and acceptance of their child; and interactive match, in which parents focus on doing things with their child that are matched to the current level of developmental functioning and behavioral ability."

We had the opportunity to hear Dr. Mahoney speak when Penny was only two months old, and we tried to take his advice and focus on her many strengths. Keeping a positive attitude became easier as we realized that there are organizations, doctors, therapists, teachers, other parents, and family and friends who want to support and encourage us every step of the way. Penny is about to reach her sixth birthday, and Down syndrome has largely faded into the background of our family life as we have fallen more and more in love with our daughter.
Resource: Copyright © 2012 Meredith Corporation. Amy Julia Becker blogs at Thin Places (www.patheos.com/blogs/thinplaces). She is the author of "A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny" and she lives with her husband and three children in New Jersey. All content on this Web site, including medical opinion and any other health-related information, is for informational purposes only and should not be considered to be a specific diagnosis or treatment plan for any individual situation. Use of this site and the information contained herein does not create a doctor-patient relationship. Always seek the direct advice of your own doctor in connection with any questions or issues you may have regarding your own health or the health of others.

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How to Raise a Child With Down Syndrome: Advice and Resources

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Down syndrome occurs in one of 691 births, or 6,000 births per year in the U.S., as a result of the presence of an extra chromosome 21 at conception. Although individuals with Down syndrome tend to experience some health problems throughout their lives, recent medical advances have increased their life expectancy.

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You have to be nice to a person with this disease because they have emotions that are very sensitive and they require a lot of love and attention, also they have to go to regular doctor visits to see if there isn't anything weird going on with the child. This could also be costly because in some cases they have problems with the heart which may need surgery which could cost a lot.

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The cause of Trisomy 21 is a genetic disorder caused when abnormal cell division results in extra genetic material from chromosome 21. This causes a distinct facial appearance and disabilities

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What is Down Syndrome?

In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm - although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.

How Common is Down Syndrome?

According to the Centers for Disease Control and Prevention, approximately one in every 700 babies in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition. About 6,000 babies with Down syndrome are born in the United States each year.

When Was Down Syndrome Discovered?

For centuries, people with Down syndrome have been alluded to in art, literature and science. It wasn't until the late nineteenth century, however, that John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, that earned Down the recognition as the "father" of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity.

In recent history, advances in medicine and science have enabled researchers to investigate the characteristics of people with Down syndrome. In 1959, the French physician Jérôme Lejeune identified Down syndrome as a chromosomal condition. Instead of the usual 46 chromosomes present in each cell, Lejeune observed 47 in the cells of individuals with Down syndrome. It was later determined that an extra partial or whole copy of chromosome 21 results in the characteristics associated with Down syndrome. In the year 2000, an international team of scientists successfully identified and catalogued each of the approximately 329 genes on chromosome 21. This accomplishment opened the door to great advances in Down syndrome research.

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What is Down Syndrome? | National Down Syndrome Society

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What is Down Syndrome? In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes.

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Down Syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This causes development and intellectual delays, as well as physical disabilities caused by a genetic disorder. There are more than 200,000 US cases per year which is a lot.