WILLIAMS SYNDROME: A Rare Neurodevelopmental Disorder

What is Williams Syndrome? Originally described by Williams and Beuren in 1961, Williams syndrome (WS) is a rare  neuro-developmental disorder that occurs in about 1 in 8,000 births.

It affects many parts of the body. Children with this disorder have unique facial features including a short nose with a broad tip or a sunken nasal bridge, puffiness around the eye, broad forehead, long upper lip length and prominent lower lip, small chin and a full cheeks. Some people who are affected with this disorder have dental problems such as small, widely spaced teeth and teeth that are crooked or missing. In older children and adults, the face appears longer or thin and bony.

This condition is also characterized by mild to moderate intellectual disability or learning problems, unique personality characteristics and cardiovascular problems. Developmental delays are present such as delay of language abilities and delayed motor skill development.  Language abilities are usually observed to be deficient until adolescence period through describing phrases and identifying words including the interaction of speech sounds although a person with Williams syndrome sometimes good in vocabulary.  Development of motor skills are also delayed such as in learning to walk, writing and drawing, assembling puzzles, performing strength and readiness of the arms and hands in physical activity. In addition to this, Attention Deficit Disorder (ADD), anxiety and phobias are common among people with this developmental disorder.

People who are affected with Williams syndrome typically achieve a below-average height and weight. They have developed joint problems, weakened muscle tone and problems in visual, digestive and urinary that probably the reason why they are typically limited in their ability to live independently. But I would like to emphasize that this developmental impairment is attributed more on psychological symptoms than physiological problems.

Can Williams syndrome be inherited? You don’t have to worry because according to the medical experts,  Williams syndrome is not inherited, but still there is a possibility to occur in people even with no history of the disorder in their family.

There is no cure for Williams syndrome. 

FULL SUPPORT FOR STUDENTS with SPECIAL NEEDS

How important is it for students with special needs to have a better educational placement in school? As far as I know, the Individuals with Disabilities Education Act (IDEA) require that all individuals with special needs must be educated in an appropriate Least Restrictive Environment (LRE).  

In this educational placement, students can meet their educational needs and many factors should be considered such as the type of skills, values and behaviors they need to learn;  direct instructions that student needs; or need to receive instructional supports that maximize their participation in the general education curriculum; will help them to achieve their goals and; can develop their ability to focus. What does this mean? It simply means that students needed not to be distracted by distractions like noise, etc. So, Least Restrictive Environment would be highly recommended for students with disabilities to support their learning completely.

 

I can still remember when a special education teacher argued with me about ‘distraction’. It seemed that he didn’t understand what he was talkin’ about. I told him that students must be placed in an appropriate educational placement to avoid distraction. But he answered me; “kahit saan naman ilagay ang mga ganyang ‘sped’ lagi silang destructed. I asked him to spell out the word and he spelled two words, “destructed and destruction.” The spelling was correct but he didn’t really know the word ‘destruction’ means ‘act of destroying’. Whew! He sounded so funny. He didn’t even know the difference between the words distraction and destruction.

Well, I have found these meanings from the dictionary:

·    Destruction is an act or a process of damaging something; the state or fact of being destroyed.

·      Distraction the act of distracting; that which distracts or divides the attention, or prevents concentration.

 As I have learned from several seminars conducted by Dr. Edilberto Dizon and Autism Society of the Philippines, special educators may try to develop ways to meet the student’s needs in the school. They should be provided all types of support since parents entrusted their children to an institution wherein they might be given an appropriate educational support and placement as well. I believe that there is a need for well-trained special educators who have expertise in effective instruction for students with disabilities. They should have to work effectively in inclusive schools. 

So from giving all the educational support up to placing the students into Least Restrictive Environment will prove that special educators and institutions for students with disabilities are doing their best to meet all the students’ needs.

“Distracted by all sorts of distractions, it wanders around aimlessly in the ten directions.” --- Sri Guru Granth Sahib

INDIVIDUALS with DEVELOPMENTAL DISABILITIES’ LIFE SPAN

How long do individuals with developmental disabilities live? The question is really difficult to answer. Though there are some disabilities that not classified as a medical condition but it is the disability itself that determines life expectancy rather than the underlying cause. However, the said individuals are prone to a number of factors that are known to reduce life expectancy such as incontinence (which means the inability of the body to control the functions of urination), swallowing difficulties, epilepsy, degree of cognitive and intellectual damage and the foremost is immobility. Immobile people usually suffer from sores, respiratory and kidney problems.

Recently, I heard from foreign news that in the United Kingdom, individuals with developmental disabilities have shorter life span compared to regular individuals. Perhaps, they unable to provide self-care and they need to spend their entire life under some form of supervision. But there are individuals who have functional communication and don’t depend on others for their personal needs and some are just slightly suffer from minor physical health problems because they can seek help. Although there is argument about the factors that reduce life expectancy and even debates to determine or estimate individuals with developmental disabilities’ life span.

Just asking  myself, 'Doesn’t God allow the individuals with developmental disabilities particularly those who have mental retardation or down syndrome and Autism, to die ahead of their parents because nobody will take care of them?' God gave these ‘special individuals’ to the people who are responsible to handle them… They are given to the parents who can cite patience, respect, acceptance, compassion and LOVE. Although parents may entrust them to their relatives or institution when or before they die but nobody could treat and love their children the way they do. Isn’t it the reason why special children or individuals with developmental disabilities have short life span?


But we should bear in mind that God is totally sovereign in the way that He is handling, directing, controlling our lives... That nobody could predict how and when a person will depart from this life.


The best that we can do is help the individual/s with special needs to be happy, feel belonged and accepted... And part of this wonderful world.

Individuals with Autism Have Exceptional Talents and Brilliance

According to the research, individuals with autism particularly children display a wide range of intellectual abilities. And I have proven that because my child shows strong memory skills. He has Asperger's Syndrome Disorder but he has intelligence in the normal range. 

But let’s talk about other people with Autism who show exceptional talents despite their functional disabilities. Along with the difficulties, autism brings individual strengths with special abilities. Those abilities include strong memory skills, math skills, creative thinking skills, musical ability, artistic ability and some others. Many individuals with Autism show special talents in a specific area of interest such as artistic abilities, musical abilities, excellent calculation, etc. 

But let me inform you that not all individuals with Autism Spectrum Disorders (ASD) just focused in a specific area of interest.  There are few or at least 10 percent (10%) of individuals with Autism have been reported to show savant abilities in music, drawing, etc. 

What is savant, anyway? Well, it is a rare condition in which individuals with developmental disorders including Autism Spectrum Disorder (ASD) have one or more areas of expertise, ability or intelligence. They can memorize all the capitals of the world, reading fluently, dismantling and reassembling electronic gadgets or machines or they may be a computer wizard. They may also perform well in examinations that involve visual-spatial abilities. They are good in fixing jigsaw puzzles and understanding abstract ideas and proven that they have an excellent rote memory. These are just some examples of the amazing talents that have been observed in individuals with Autism.

Please don’t underestimate persons with Autism because they might be talented and intelligent than YOU!


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