Financial Independence & Self
The difficulty or inability to perform in a setting such as a work setting can affect a persons ability to provide for themselves and support themselves financially. This impacts the persons ability to live independently. They may need to rely on others to care for them for their entire lives. If a person needs to depend on others to care for them, they may feel an inability to make choices for themselves and to control the direction of their own lives.
Get Treatment For Health Problems
Your child may develop health problems related to Down syndrome, such as ear infections, dental problems, or behavior issues. He or she may need:
- Medicines, such as antibiotics for ear infections and thyroid hormones for an underactive thyroid gland .
- Surgery to correct problems such as heart defects, bowel obstruction, or spinal problems.
- Different types of therapy, such as speech therapy, nutritional advice from a registered dietitian, or counseling for behavior problems.
Are People Who Have Down Syndrome At Greater Risk For Developing Alzheimer’s Disease
People with Down syndrome are at greater risk for developing Alzheimers disease. According to the Down Syndrome Society, Alzheimers disease is diagnosed in about 30% with Down syndrome in their 50s and in about 50% of those in their 60s.
Studies show the extra full or partial chromosome contributes to this increased risk of Alzheimers. Genes on chromosome 21 produce amyloid precursor protein, which plays an important role in the brain changes seen in Alzheimers patients.
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What Is Down Syndrome
Down syndrome is the term for a set of cognitive and physical symptoms that can result from having an extra copy or part of a copy of chromosome 21.
Down syndrome is the most frequent chromosomal cause of mild to moderate intellectual disability, and it occurs in all ethnic and economic groups.
The degree of intellectual disability in people with Down syndrome varies but is usually mild to moderate. Generally, children with Down syndrome reach key developmental milestones later than other children.
According to the Centers for Disease Control and Prevention, approximately 6,000 babies are born in the United States each year with Down syndrome, or approximately 1 out of every 691 live births.
In recent decades, thanks to appropriate support and treatment, life expectancy for people with Down syndrome has increased dramatically: from 25 years in 1983 to more than 60 years today.
Intellectual Issues In Down Syndrome
Everyone with Down syndrome has some degree of intellectual disability. People with Down syndrome tend to learn slower and have difficulties with complex reasoning and judgment. It is impossible to predict what level of intellectual disability those born with Down syndrome will havealthough, this will become clearer as they age.;
There is a wide range of mental abilities among people with Down syndrome. The IQ rangemeasure of intelligencefor normal intelligence is between 70 and 130. A person is considered to have a mild intellectual disability if their IQ is between 55 and 70. A moderately intellectually disabled person has an IQ of between 40 and 55.
Most individuals with Down syndrome score within the mild to moderate range for intellectual disability.
Despite their IQ, people with Down syndrome can learn. There is often a misconception that those with Down syndrome have a predetermined ability to learn. We know now that people with Down syndrome develop over the course of their lifetime and have the potential to learn. This potential can be maximized through early intervention, good education, higher expectations, and encouragement.
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Caring For A Child With A Developmental Disability
Caring for a child with a developmental disability is the same as caring for any other child in the sense that they have the same basic needs. They need food, water, safety, love, a sense of belonging within their family and community, social interaction, and to develop a sense of independence and self-determination.
Unlike other children the same age, they may require additional care. They may not achieve the same developmental milestones, or they may achieve them at a later date than other children their same age. They may need extra help in school, or have additional members on their home health care team to help meet their needs. With extra support and treatment interventions, children with developmental disabilities can lead full and productive lives, filled with joy and happiness, just like any other children.
Misconception: All People Who Have Down Syndrome Will Develop Alzheimers Disease
Reality: Numerous studies have shown that virtually 100% of people with Down syndrome will have the plaques and tangles in the brain associated with Alzheimers disease but not necessarily the actual symptomatic disease. How many people with Down syndrome will develop the symptomatic Alzheimers disease needs additional research. One study from 1989 indicates that between 20-55% of people with Down syndrome will develop symptomatic Alzheimers disease before the age of 50 .
Clearly, this is an important area of research for people with Down syndrome and Alzheimers and the Global Down Syndrome Foundation is committed to ensuring such research happens.
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When Should You Call Your Doctor
- Your baby or very young child with Down syndrome shows signs of:
- Intestinal blockage, such as severe belly pain, vomiting, and possibly swelling of the stomach.
- Heart problems, such as bluish discoloration of the lips and fingers, difficulty breathing, or a sudden change in eating or activity level.
if a person with Down syndrome:
- Acts differently or stops doing things that he or she used to. These may be a sign of pain or an illness.
- Shows signs of mental health issues, such as anxiety or depression. Depression may be triggered by a big change or loss, such as the death of a family member or a change in a caregiver.
Misconception: Adults Who Have Down Syndrome Cannot Live Independently Or Get Jobs
Reality:;An increasing number of adults with Down syndrome in the U.S. are living independently with limited assistance from family members or the state. A small percentage are able to live entirely independently. In the U.S. some students who have Down syndrome graduate from high school, and some go on to attend post-secondary education.
More opportunities are available for education and employment today than ever before. Anecdotally, we know that people with Down syndrome can be excellent employees and some employers have reported a higher satisfaction level among ALL workers when they have co-workers who have Down syndrome.
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How Serious Is Mental Retardation That Accompanies Down Syndrome
The degree of mental retardation that accompanies Down syndrome varies widely, ranging from mild to moderate to severe. However, most mental retardation falls within the mild to moderate range. Further, studies suggest that, with proper intervention, fewer than 10 percent will have severe mental retardation. There is no way, however, to predict the mental development of a child with Down syndrome based on physical features.
Down Syndrome Capabilities And Potential
Down syndrome affects a persons development in certain ways, but it is not the most important influence on how that person develops and lives their life. People with Down syndrome demonstrate a wide range of capabilities. What happens after birth is far more important in shaping the outlook for a person with Down syndrome than the presence of the extra chromosome.;Children with Down syndrome attend childcare, kinder, primary and high school alongside other children of their age. Adults with Down syndrome attend post-school training, participate in the workforce and lead full lives as productive and valued members of the community. An increasing number of people with Down syndrome are achieving independent living, with some level of support, within the community.People with Down syndrome often have their abilities and potential underestimated. A person with this condition will achieve in many areas when offered the opportunity and supported to do so.
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Can A Child With Down Syndrome Go To School
Yes. There are special programs beginning in the preschool years to help children with Down syndrome develop skills as fully as possible. Along with benefiting from early intervention and special education, many children can be integrated in the regular classroom, to some extent. The outlook for these children is far brighter than it once was. Many will learn to read and write and participate in diverse childhood activities both at school and in their neighborhoods. While there are special work programs designed for adults with Down syndrome, many people with the disorder can hold regular jobs. Today, an increasing number of adults with Down syndrome live semi-independently in community group homes where they take care of themselves, participate in household chores, develop friendships, partake in leisure activities, and work in their communities.
Applying For Disability Benefits
If your child has Down syndrome, the one factor that will decide if you qualify for disability benefits is your income. These benefits will usually be granted to the families of patients who need it the most. If you have a high income, you will likely not be granted disability benefits even if you have a child that has Down syndrome.
The good news is that if the child will already be of legal age, they will be able to apply for the disability benefit. Even if they will still be living with their parents, they will be eligible to apply for the disability benefit.
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Disability Does Not Define A Person
Even if Down syndrome is considered to be a disability, it does not have to be the defining characteristic of a person. People who have Down syndrome have some aspects of their lives that are affected by their disability, but it does not mean that they will not be able to lead full lives that are fruitful and fulfilling.;
Many of these people learn to overcome the negative aspect of their disability and still make the most out of living life. Many of them are still able to reach their dreams and bring out their full potential during the journey to reaching their goals.
Intellectual And Developmental Symptoms
Cognitive impairmentâwhich means problems with thinking and learningâis common in people with Down syndrome and usually ranges from mild to moderate. Down syndrome is only rarely associated with severe cognitive impairment.
Common cognitive and behavioral problems may include:
- Short attention span
- Slow learning
- Delayed language and speech development
In addition, people with Down syndrome are at increased risk for a range of other health conditions, including Autism Spectrum Disorders, problems with hormones and glands, hearing loss, vision problems, and heart abnormalities.
What If We Find Out That Our Unborn Baby Has Down Syndrome
If you find out the baby youre carrying has Down syndrome, your providers will direct you to resources to help you after your childs birth. Several options are available .
You may want to participate in counseling or join a support group. Counselors and support groups help you prepare for raising a child with Down syndrome.
In support groups you can talk with other parents about their experiences living with Down syndrome. Its a great way to share practical advice on coping with the condition, its ups-and-downs, frustrations and joys. Youll find that youre not alone.
What Resources Available For People With Down Syndrome And Their Families
Many resources are available to people with Down syndrome and their families. Parents of children with Down syndrome may need support with the special needs of their infants and toddlers. Many families join Down syndrome support groups to share experiences and ways to help their children live a healthy, full life.
People with Down syndrome will likely need assistance throughout their lives. In addition to ongoing therapies, this could include help with education, employment and living independently. A variety of organizations offer resources to help educate and empower people living with Down syndrome and their families.
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What Kind Of Care Will Your Child Need
Starting soon after birth, a baby with Down syndrome will be tested for health problems, such as eye, ear, or thyroid problems. The sooner these problems are found, the better they can be managed. Regular doctor visits can help your child stay in good health.
Your doctor will make a treatment plan that meets your growing child’s needs. For example, most children with Down syndrome need speech therapy and physical therapy. Teens and adults with Down syndrome may need occupational therapy to learn job skills and learn how to live on their own. Counseling may help if there are social or emotional issues..
Many professionals will help you and your child through life. But you are vital to your child’s success. To help your child:
- Learn all you can about Down syndrome. This can help you know what to expect and how you can help your child.
- Find out what type of financial help you can get by contacting your state’s Department of Developmental Disabilities.
- Check into resources in your area. For example, many states provide free early-intervention programs for children with Down syndrome up to age 3 to help them get off to a good start.
- Look into school options for your child. Federal law requires public schools to provide services to all children with disabilities who are ages 3 to 21.
Learning about Down syndrome:
Prenatal Screening For Down Syndrome
Over the last 10 years, new technology has improved the methods of detection of Down syndrome.
While there are ways to diagnose Down syndrome by obtaining fetal tissue samples by amniocentesis or chorionic villus sampling, it would not be appropriate to examine every pregnancy this way. Besides greatly increasing the cost of medical care, these methods do carry a slight amount of risk to the fetus.
So screening tests have been developed to try to identify those pregnancies at “high risk.” These pregnancies are then candidates for further diagnostic testing. Screening Vs Diagnostic Test
The Difference Between a Screening Test and Diagnostic Test:
- In screening tests, the goal is to estimate the risk of the patient having the disease or condition.
- In diagnostic tests, a positive result very likely means the patient has the disease or condition of concern.
Diagnostic tests tend to be more expensive and require an elaborate procedure; screening tests are quick and easy to do. However, screening tests have more chances of being wrong: there are “false-positives” and “false-negatives” . Maternal Serum Screening
The mother’s blood is checked for three items:
- unconjugated estriol
- human chorionic gonadotropin
These three are independent measurements, and when taken along with the maternal age , can calculate the risk of having a baby with Down syndrome.
Find Resources And Support
Your doctor or local hospital can refer you to community resources to help you learn what to expect and how to care for your baby who has Down syndrome.
You may also want to think about joining a support group. Talking and sharing with other parents of children with Down syndrome can help you manage difficult feelings. It can also help you know what kinds of challenges to expect, as well as help you to discover the joys other parents have experienced with their children. To learn more about support groups, see the Other Places To Get Help section of this topic.
Families of children who have Down syndrome may need other types of resources, such as:
- Financial assistance. Children with Down syndrome have special needs that may create additional expenses for the family. In the United States, some state and federal government services help cover the costs of certain programs. The amount your child receives depends on different things such as your income and your child’s level of disability. To find out about financial assistance in your state, call your state’s Department of Developmental Disabilities.
- Estate planning. Become familiar with tax issues and estate planning to ensure that your child will have proper care and necessary resources available if you die.
- Family counseling. This therapy involves regular sessions with a qualified counselor who has experience working with families who have children with Down syndrome.
How Is Down Syndrome Treated
Treatment for Down syndrome varies. It typically starts in early childhood. The purpose is for you and your child with Down syndrome to learn to cope with the condition, as well as treat what physical and cognitive challenges arise.
Your providers may help you develop a care team for your family member with Down syndrome. The care team may include:
- Primary care providers to monitor growth, development, medical concerns and provide vaccinations.
- Medical specialists depending on the needs of the person .
- Speech therapists to help them communicate.
- Physical therapists to help strengthen their muscles and improve motor skills.
- Occupational therapists to help refine their motor skills and make daily tasks easier.
- Behavioral therapists to help manage emotional challenges that can come with Down syndrome.
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Abortion: Court To Rule On Legal Bid To Ban Termination Of Babies With Disabilities After 24 Weeks
Under current laws, a woman can have an abortion after 24 weeks if she is at risk of grave physical and mental injury, or if the foetus has a disability, including Down’s syndrome.
Thursday 23 September 2021 11:00, UK
A high court judgement is expected later that could prevent unborn babies with disabilities, including Down’s syndrome, being aborted after 24 weeks.;
A 26-year-old with Downs’ syndrome is among those who brought the case that is seeking to overturn the current Abortion Act that allows parents to terminate pregnancies where there is a severe foetal abnormality at any time up until birth.
Abortions can take place in the first 24 weeks of pregnancy in England, Scotland and Wales.
They must be approved by two doctors, who agree that having the baby would pose a greater risk to the physical or mental health of the woman than a termination.
After 24 weeks a woman can have an abortion if she is at risk of grave physical and mental injury, or if the foetus has a disability, including Down’s syndrome.
Heidi Carter, who got married last year, believes the existing abortion law as it stands is “downright discriminatory”.
“I don’t like to have to justify my existence, it makes me feel like I’m not as valuable as anyone else. It makes me feel like I shouldn’t be here,” she said.