ALL YOU NEED TO KNOW ABOUT DOWN SYNDROME
Incidences of Down Syndrome
- One in 800 live births is a figure that is accepted worldwide
- Down Syndrome affects people of all ages, races, religious and economic situations.
Misperceptions of Down Syndrome
Down Syndrome is not a disease. So people with Down Syndrome do not “suffer” from, nor are they “victims” of, their condition. Down Syndrome is only a part of the person. A person with Down Syndrome should not be referred to as, “a Down.” People with Down Syndrome are all unique individuals and should be acknowledged as persons first and foremost, e.g.: John is 29 and he has Down Syndrome. Just like anyone else they have feelings; they experience love, anger, fear, happiness, etc.
How severely can this condition impair a person?
Although Down Syndrome is caused by genetic factors, environmental influences and upbringing play a critical role in their development, as with any other child.
Children with Down Syndrome may have physical impairments and developmental delay ranging from mild to severe. Down Syndrome is associated with a range of developmental difficulties. These include delayed motor skills (such as sitting, crawling and walking in infancy) and delayed cognitive skills (such as speech and language acquisition and short-term memory abilities).
Severity of impairment is very much dependent on the degree of intellectual disability and whether there are additional medical conditions present.
Children with Down Syndrome have a higher risk for the following conditions:
- congenital heart defects
- hearing loss
- eye disease
- refractive errors
- hip dislocation
- sleep apnea
- thyroid disease
However, many of the conditions mentioned can be improved with early intervention.
Physical characteristics of Down Syndrome are:
- Muscle hypotonia, low muscle tone
- Flat facial profile, a somewhat depressed nasal bridge and a small nose
- Oblique palpebral fissures, an upward slant to the eyes
- Dysplastic ear, an abnormal shape of the ear
- A single deep crease across the center of the palm
- Hyperflexibility, an excessive ability to extend the joints
- Dysplastic middle phalanx of the fifth finger, fifth finger has one flexion furrow instead of two
- Epicanthal folds, small skin folds on the inner corner of the eyes
- Excessive space between large and second toe
- Enlargement of tongue in relationship to size of mouth.
Many people with Down Syndrome do not have all of these physical characteristics, while children with Down Syndrome may share certain physical characteristics, these will vary from child to child. Most importantly, each child will inherit its own family looks and characteristics. But they do help doctors, nurses, and other hospital personnel determine if a baby has Down Syndrome and needs immediate attention and care because of possible medical and health problems.
Do people with Down syndrome have a particular personality type?
No, people with Down Syndrome do not have a particular personality type. People with Down Syndrome are individuals. However, people with Down Syndrome are more likely to use certain coping strategies. For example, it is common for people with Down Syndrome to use routine, order and sameness as a way of rationalising and controlling their lives. Similarly, people with Down Syndrome may also use self-talk as a way of directing their behaviour, expressing their feelings and making sense of what is sometimes a very confusing world. Change can be very disorientating especially if you have a learning disability. In the past, people with Down Syndrome have sometimes been portrayed as being stubborn. Stubbornness and a refusal to co-operate may be a signal from the individual that they do not fully understand what is expected of them. Stubbornness can also be symptomatic of an individual trying to exert control over their lives. The best way to help someone is to try and find out from him or her what the problem is.
How much will one’s quality of life be affected?
Quality of life is very subjective. But while we at DSA believe that a person with Down Syndrome can live a reasonably independent live, and is able to participate in many things in life, there is always some things that we be limited or not possible for them.
In the past it was believed that there were many things that people with Down Syndrome could not do when in fact they had never been given the opportunity to try. Today these opportunities have never been greater with many people with Down Syndrome leading rich and varied lives.
However there is along way to go and much work to be done before all people with Down Syndrome, both children and adults are given the opportunity to partake fully in all aspects of community life.
Support for individuals with Down Syndrome
Early intervention, lifelong education and training and inclusion with the mainstream is a holistic approach to managing Down Syndrome.
The need for strong support from the family unit and the community.
Certain strategies will also help a child with Down Syndrome as he or she grows up:
Visual learning strengths
Children with Down Syndrome may find learning from listening difficult due to hearing and verbal processing difficulties – this leads to serious delays in speech, language and cognitive development.Using visual methods, such as signing, pictures and reading to teach talking in the early years can reduce much of the language and cognitive delay associate with Down Syndrome.
Most children with Down Syndrome can learn to read and should start in their pre-school years.Early sight word reading is a particular strength for preschool children with Down Syndrome.In school years, reading continues to be a strength for children with Down Syndrome.
Speech and language development
Teaching children with Down Syndrome to read will lead to permanent improvements in their speech, language and short-term memory skills.
In school years learning to understand number can be a specific difficulty and the children’s number performance is usually about two years behind their literacy skills. Early understanding of counting is, however, as good as in non-verbal mental age matched peers so more research is needed to identify the problems with later number.Using visual/multi-sensory teaching methods (Numicon) assists children with Down syndrome to understand the number system and to calculate.
Memory training can improve short-term memory – both visual and verbal short-term memory when provided in inclusive classrooms alongside literacy instruction.
Children with Down Syndrome who are fully included for their education in mainstream schools have better speech and language skills, are more likely to be reading and writing, and to have more mature social behaviour. However, attention needs to be paid to their friendship opportunities in and out of school.
Leisure and recreation activities
Of course, children with Down Syndrome need to be provided access to leisure and recreation activities with their typically developing peers.
Statement on the use of Prozac, Focalin and Ginkgo as a “treatment” for Down Syndrome
Clinicians, scientists and Down Syndrome groups across the world have today issued a statement about the use of a protocol that is claimed to improve intelligence and behaviour for people with Down Syndrome.
This protocol is being widely discussed online and promoted through a film being sold on DVD and screened in locations in the US. It is promoted by a group called the Changing Minds Foundation. It includes drugs approved for use in the treatment of depression and attention deficit and hyperactivity disorder. The claims for the protocol are based on studies of mice that carry additional copies of some of the genes thought to function similarly to those carried on human chromosome 21, and case studies presented in the promotional DVD.
The statement provides information about the protocol for families and healthcare professionals seeking to evaluate these claims. The statement concludes that there is no reliable evidence of benefit and no clear evidence of safety to support the use of this protocol.
Over 20 clinicians and scientists and 15 organisations have publicly endorsed the statement, offering a clear indication of the wide consensus cautioning families about the risks of the unproven therapy.
“We are pleased to have contributed to a wide collaborative effort to produce clear, robust and credible guidance about this potentially dangerous protocol,” commented Frank Buckley, CEO of DownsEd International and DownsEd USA. Both organisations have endorsed the statement. He added, “Claims about unproven therapies now spread remarkably quickly. They can quickly create concerns for families around the world. The Down syndrome community has shown that it can respond very effectively, with regional, national and international organisations working together with healthcare professionals and scientists to prepare this statement.”
The statement can be read in full online:
The use of Ginkgo, Prozac and Focalin as a “treatment” for Down Syndrome