By Adelina Martinez

Williams Syndrome

Williams Syndrome or also known by “Elfin” for their facial characteristics that resemble and are compared to elves & fairies.

FACTS:1. One out of 7500 to 20,000 people born with WS

worldwide.2. There is no cure for WS3. WS was first identified in 1961 by Dr. J.C.P Williams of

New Zealand WS is a genetic disorder/neuro developmental disorder in which Chromosome #7 is missing a arm or the deletion of about 26 genes.

MEDICAL FACTS:

1. Heart Disease, (SVAS) Supravalvar Aortic Stenosis or Narrowing of the Aorta including Heart Murmurs

2. Hypercalcaemia (high levels of calcium in the blood)3. Nervous Systems such as the Amygdala levels are greater

than the average person, which individuals with WS have no fear to strangers and are very social. *Amygdala; human sense of fear.

4. Mental Disability5. Gastrointestinal Problems- prolonged colic6. Dental Problems- teeth are spaced apart7. Low Muscle Tone8. Hyperacusis, the agitation to high pitched sounds, which

contributes to higher anxiety levels. 9. Visual Processing, depth perception and complex spatial

relationships10.Bladder Problems11.Kidneys

Diagnosed:

My son Sebastian was diagnosed with Williams Syndrome Sept. 18, 1997He is now fourteen years old and is an 8th grader at Capitan Middle School.

EDUCATION:

WS individuals when they start school, have mild to severe learning difficulties: Impulsiveness Poor Concentration Fine Motor Skills is difficult Self Help Skills Ability to Reason

Here are the Steps that we as parents of a child with WS took to help.Awareness• Therapy and or Therapies• State Services that can help, Children’s Medical Services (CMS)• Early Education Programs such as Region IX and HEADSTART

programs• Setting Goals as a Family Unit • An IEP was completed and realistic goals were set for him when

he started the Capitan Elementary School and each year his IEP has been completed.

Therapy for SebastianSpeech TherapyPhysical TherapyCognitive Occupational Therapy

SPECIAL EDUCATION:There are many different Accommodations & Modifications that educators can do to assist. (Theses were used in Sebastian's Case)• Weights for his wrists• Special Vest

Special Scissors• Allowing him to sit in the front of the class room• Using highlighters and markers to start• Applying subjects that interested him to learn

We have learned that most if not all of his teachers were not aware of what was Williams Syndrome. This is were your Awareness of the subject can really help. Teaching Sebastian’s educators did a tremendous difference in his success in school.

Children with WS are overly social and outgoing, inappropriately friendly with adults and unwary of strangers. They are very talkative, with intense enthusiasm bordering on obsession for topics that interest him. They are also very musically inclined. They can pick up different instruments. However, there has been one obstacle that we still sometimes have to deal with, in and out of the learning atmosphere, which is how others allow him to misbehave.

We try to enforce on a daily bases that Sebastian Stop interrupting an adult conversation Repeating the same subject over and over To avoid being over friendly with strangers (e.g.

hugging) He needs to be treated as an equal with his peers,

brothers, etc.. He needs to be challenged everyday He learns by doing things repeatedly, this is an

important learning tool

AGENCY:

There are several state programs that help individuals with disabilities.

SSIMedicareNew Mexico Department of HealthChildren’s Medical ServicesNew Mexico DD ProgramNew Mexico D & E Program

The disadvantages that we have found as parents were:

Long waiting list to receive state help e.g. DD Waiver 9 years

You need lots of patience and determination to get things moving or done

The state government cuts back on the budgets for all these types of programs every year

Sebastian’s development and growth has been as normal, compared to others with WS. We think it’s due to that he did not suffer hypercalcimia (intolerance to lactose) in which causes these individuals to also suffer lack of sleep, constant irritation. In recent research has shown that individuals with WS has different brain tissue then a normal person.

Overall we are extremely happy of the success Sebastian has had in his education. He has improved in all areas and is now only receiving Occupational Therapy. Because of his personality he is accepted, loved and in many ways protected by his peers in school. There is tolerance and patience for Sebastian in the school setting. We have always encouraged Sebastian to play and to interact with his brothers and peers. We also have always treated Sebastian as a normal individual that is capable to do anything. We are aware that Sebastian will have still obstacles to overcome in the near future, and as an adult. However, we believe that he will be an independent adult that will learn a vocational skill and can be as productive and any other adult.

We are blessed to have such a special individual in our lives. We love Sebastian

so much and we would never change a thing.

The End!

Here are some of the website that I used to get some of my information. A little bit of research goes a long way!!!

www.williamssyndrome@att.netWilliams Syndrome Foundation

www.nmhealth.org

www.health.state.nm.us