4 Tips On Task Initiation For Children and Adults

Task Initiation is often a challenge for children and adults with an executive functioning disorder. For a child, it may be lack of initiative in doing homework while for an adult, it may include forgetting or putting off paying bills. Children and adults with task initiation issues generally have a diagnosis of autism, ADHD, Intellectual disability or a learning disorder.

Signs of a task initiation impaired executive functioning skill would be someone having difficulty in getting started on a task and keeping the effort needed in order to complete the task. A child or an adult require external cues in order to complete the task. Also, it will require understanding what is expected and understanding the task. Here are a few strategies:

  1. Limit Distractions. In the classroom any type of added sensory input can defer the student from getting started in their school work.
  2. Create a List. Visual support will help to increase getting the work done for a school-age child, you may want to create a to-do list which the steps are broken down into smaller steps. When a person with an executive function is given a task, it may be overwhelming, making it more difficult to get started.
  3. Use Cues. A clock or a timer will help the child or adult stay on time and understanding the amount of time it will take to complete a task
  4. Break task down. Create where the work is done in chunks so that the work will not be as overwhelming for the student.
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Speech-language Pathology and Adult Services

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Guest Blogger, Anne Marie Pineiro, M.A. CCC-SLP, 

Speech-language Pathologists serve individuals, families, and groups from diverse

linguistic and cultural backgrounds. Services are provided based on applying the

best available research evidence, using expert clinical judgments, and considering

clients’ individual preferences and values. Speech-language pathologists address

typical and atypical communication and swallowing in the following areas:

pragmatics (language use, social aspects of communication)

-literacy (reading, writing, spelling)

– prelinguistic communication (e.g., joint attention, intentionality, communicative signaling)

paralinguistic communication

  • cognition- attention,  memory,  sequencing,  problem solving,  executive functioning
  • feeding and swallowing- 4 phases of swallowing

-oral, pharyngeal, laryngeal, esophageal

orofacial myology (including tongue thrust)

-oral-motor functions

Source:   http://www.asha.org/uploadedFiles/SP2007-00283.pdf

In providing services to those Adults diagnosed with a variety of Developmental Disabilities, the SLP’s role may become much more defined, focusing on what is most functional to an individual in the areas of speech, receptive and expressive language (verbal or non-verbal communication) and feeding/ swallowing.  Very often we are attempting to assess and/or maintain an individual’s current level of functioning in the above areas and to train all those involved in the care of that individual in the strategies and implementation of them to achieve that goal.  In our Agency, for example, we break the assessment down into the following areas in order to develop functional and measurable outcomes:

Speech

  1. Does the individual use speech functionally to communicate wants/needs in a variety of settings?
  2. If so, is their speech understood by all, some, few communicative partners?  Are there any strategies a person might use to increase his/her intelligibility- modifying volume, rate, resonance, increasing fluency, etc.?  Does the person use Augmentative Communication to supplement speech when he/she cannot be understood e.g. low/high tech communication device, writing, American Sign Language, Picture Language Board, etc.

Language

  1. Receptive language (Language comprehension) including attention to objects, using objects functionally, identification of objects and/or pictures, comprehending one, two or three-step oral directives, vocabulary, comprehension of attributes and spatial relationships, or auditory comprehension on the word, sentence and paragraph levels.  Is comprehension on the literal or inferential levels?
  2. Expressive language- (Language expression)- for those who are verbal, the MLU (mean length of utterance) is assessed.  For non-verbal individuals, language expression can be in the form of pointing to one or two picture symbols consecutively on a picture language communication board or AAC device, writing or typing single words, phrases, sentences or paragraphs on paper, computer or AAC device.

-AAC device assessments for nonverbal individuals take into account the individual’s cognitive skills, physical abilities in order to access the device (direct selection with hand or finger, eye gaze, head pointer, switch/scanning, etc.), receptive and expressive language skills, communicative intent and pragmatic language abilities, and literacy.  All those involved in the individual’s care play an extremely important role in whether or not someone may receive an AAC device since they will be the ones to set up/take down the device and provide basic maintenance for the device, including programming, charging, etc.

Feeding and Swallowing:

Many people wonder why an SLP would be the one to review an individual’s mealtime plan or protocol.  ASHA guidelines state it best: “The speech-language pathologist is a primary professional involved in assessment and management of individuals with swallowing and feeding disorders. These areas include:

  • Performing clinical swallowing and feeding evaluation;
  • Performing instrumental assessment of swallowing function with medical professionals as appropriate;
  • Identifying normal and abnormal swallowing anatomy and physiology;
  • Identifying signs of possible or potential disorders in upper aerodigestive tract swallowing and making referrals to appropriate medical personnel;
  • Making decisions about management of swallowing and feeding disorders;
  • Developing treatment plans;
  • Providing treatment for swallowing and feeding disorders, documenting progress, and determining appropriate dismissal criteria;
  • Providing teaching and counseling to individuals and their families;
  • Educating other professionals on the needs of individuals with swallowing and feeding disorders and the speech-language pathologists’ role in the diagnosis and management of swallowing and feeding disorders;
  • Serving as an integral part of a team as appropriate;
  • Advocating for services for individuals with swallowing and feeding disorders;
  • Advancing the knowledge base through research activities.

In addition, Speech-language pathologists have extensive knowledge of anatomy, physiology, and functional aspects of the upper aerodigestive tract for swallowing and speech across the age spectrum including infants, children, and adults (including geriatrics). The upper aerodigestive tract includes oral, pharyngeal, and cervical esophageal anatomic regions. Speech-language pathologists also have extensive knowledge of the underlying medical and behavioral etiologies of swallowing and feeding disorders. In addition, they have expertise in all aspects of communication disorders that include cognition, language, and behavioral interactions, many of which may affect the diagnosis and management of swallowing and feeding disorders.”

Source: http://www.asha.org/policy/TR2001-00150/#sec1.3

The dysphagia and feeding disorders that are seen in adults with developmental disability include poorly developed and absent feeding and oral preparation skills and competencies, physiological and anatomical impairments that degrade oral-pharyngeal and esophageal bolus motility, and disruptive or maladaptive mealtime behaviors. Nutrition, hydration, saliva management, ingestion of medications, and management of the oral hygiene bolus may be involved. Upper airway obstruction (choking), aspiration, malnutrition, and dehydration may result from the disorder (Rogers et al., 1994, Sheppard et al., 1988).  Source: http://www.asha.org/policy/TR2001-00150/#sec1.3

Therefore, in our Agency that serves Adults with Developmental Disabilities, the SLP works as one member of the Team, including the Occupational Therapist, Physical Therapist, Nurse, Residential Team and Family Members to create a mealtime protocol or plan which simply states the best way to maximize nutrition while at the same time attempting to decrease incidents of choking (partial or complete blockage of the airway) or aspiration (food or liquid making its way into the lungs which can lead to aspiration pneumonia).  These plans are developed so that all involved in the individual’s care may be informed of the best feeding practices for that individual which include: adaptive mealtime equipment (any cup spoon, plate, straw, etc. used for an individual to improve ability to eat independently and to improve oral-motor control), positioning in chair or wheelchair, degrees of assistance needed for self-feeding, food and liquid consistencies, food allergies and intolerances, the presence of any mealtime behaviors, including rapid pace of eating which may increase risk of choking or aspiration, and any specific instructions the caregiver would find useful in feeding the individual or maximizing the individual’s ability to feed themselves.

I hope you find this information helpful in identifying the SLP’s role in providing services to adults with Developmental Disabilities.

This information is in no way intended to serve as a complete guide in this area, but is meant to simply assist in identifying ways the SLP works as part of the Interdisciplinary Team in serving adults with developmental disabilities in a day habilitation setting

Epilepsy- General Information

Epilepsy is a chronic disorder of the central nervous system. It is often characterized by seizures and is the fourth most common neurological disorder and affects people of all ages.

epilepsy ribbon

A person is considered to have epilepsy if they meet any of the following conditions:

  1. At least two unprovoked seizures occurring greater than 24 hours apart.
  2. One unprovoked seizure and after two unprovoked seizures occurring over the next 10 years.
  3. Diagnosis of an epilepsy syndrome.
Seizures

A seizure is caused by a burst of abnormal activity in the brain. With a seizure, a person has change in awareness, behavior, body movement or sensation. A seizure can last from a few seconds to a few minutes. Seizures can take on many different forms and affect people in different ways.

Auras

Auras are often describes as a warning before the occurrence of a seizure. Not everyone experiences an aura. Some have described it as a change in feeling, sensation, thought or behaviors. this may include:

  • An overpowering smell.
  • Nausea or indigestion.
  • A rising/sinking feeling in the stomach.
  • a sleepy/dreamy feeling.
Types of Seizures

Generalized Tonic Clonic Seizures. Involves the entire brain. May also be referred to as a grand mal seizure. This occurs when abnormal electrical activity affects all or most of the brain. often the body will stiffen and then the person will lose consciousness and then the body will shake due to uncontrollable muscle contractions.

Absence Seizure– A brief loss of consciousness or awareness. It generally last only seconds and mainly occurs in children. Signs may include a blank stare, lip smacking and repeated blinking, chewing or hand movement.

Focal Seizures– The burst of electrical activity is contain in one part of the brain. In a simple focal seizure, you may have muscular jerks or strange sensations in one arm or leg. The person does not lose consciousness or awareness.

Causes
  • brain trauma
  • genetics
  • stroke
  • tumors
  • brain infections
  • head injury.
Risk Factors
  • Babies who are born small for their age
  • Babies who have seizures in the first month of life
  • Cerebral Palsy
  • Autism Spectrum Disorders
  • Conditions with intellectual and developmental disabilities
  • Family history of epilepsy (febrile)
Triggering Factors
  • Stress or anxiety
  • Lack of sleep or tiredness
  • Skipping meals
  • Alcohol intake
  • Flickering lights
  • Fever
  • Caffeine
Diagnosis
Treatment

 

The following websites offer additional information on epilepsy including causes, symptoms, treatment, and diagnosis:

Centers for Disease Control and Prevention

Epilepsy Foundation

Mayo Clinic

Medical News Today

Medlineplus

National Institute of Neurological Disorders and Stroke 

WebMD

Wikipedia

None of the information provided is meant to treat or diagnose any conditions. Not is it a substitute for medical, or psychological diagnosis and treatment.

October is National Disability Employment Month

 

Image result for national disability employment awareness month 2016

National Disability Employment Awareness is recognized each October to highlight the workforce contributions of people with disabilities.

So much as been accomplished over the years, but still, we have a long way to go. In almost all states, the number of people working with disabilities is half of those without disabilities. This year, I wanted to reflect on how much has been achieved over the years.

A history of Disability Employment Awareness

1920- The Smith-Fess Act: Signed into law by President Woodrow Wilson, establishes the Vocational Rehabilitation program for Americans with Disabilities.

1935- Social Security Act of 1935- establishes an income system for those unable to work by providing benefits.

1936- Randolph-Sheppard Act: Signed by President Franklin D. Roosevelt in 1936, the Randolph-Sheppard Act mandates a priority to people who are blind to operate vending facilities on federal property.

1938- Wagner-O’Day Act:The Wagner-O’Day Act is passed, requiring all federal agencies to purchase specified products made by people who are blind. In 1971, the Javits-Wagner O’Day Act expands the program to include services as well as supplies and incorporate people with other significant disabilities. In 2006, the program is renamed AbilityOne.

1945- Declaration of National Employ the Physically Handicapped Week:The return of service members with disabilities from World War II sparks public interest in the contributions of people with disabilities in the workplace. On August 11, 1945, President Harry S. Truman approves a Congressional resolution declaring the first week in October “National Employ the Physically Handicapped Week.’ In 1962, the word “physically” is removed to acknowledge the employment needs and contributions of individuals with all types of disabilities.

1954- Vocational Rehabilitation Gains Momentum:Congress passes the Vocational Rehabilitation Amendments of 1954, increasing the scope of the VR system. Targeting people who could proceed or return to work with assistance, VR helps thousands of people obtain employment. Mary Switzer, Director of the Office of Vocational Rehabilitation at the time, uses this authority to fund more than 100 university-based rehabilitation programs. The Act also initiates funding for research, eventually leading to the National Institute on Disability and Rehabilitation Research.

1956- Creation of Social Security Disability Insurance: Congress passes the Social Security Amendments of 1956, which create a Social Security Disability Insurance (SSDI) program for workers with disabilities aged 50 to 64. Additional amendments two years later extend SSDI benefits to the dependents of workers with disabilities.

1973- The Rehabilitation Act:The Rehabilitation Act of 1973 marks a major step forward in legislation impacting the employment of people with disabilities, extending and revising state Vocational Rehabilitation services and prohibiting discrimination on the basis of disability by federally funded and assisted programs, federal employers and federal contractors.

1977- Section 504 of Rehabilitation Act: After major demonstrations in 10 U.S. cities on April 5, including a 150-person sit-in in San Francisco led by Judith Heumann and Kitty Cone lasting 28 days, U.S. Secretary of Health, Education and Welfare Joseph Califano signs regulations implementing Section 504 of the Rehabilitation Act. These regulations extend civil rights to people with disabilities, covering any program or activity, including employment services, receiving federal financial assistance

1986- Employment Opportunities for Disabled Americans Act of 1986:The Employment Opportunities for Disabled Americans Act enhances work incentives for people with disabilities under the Supplemental Security Income (SSI) program by making permanent section 1619 of the Social Security Act, which provides for special SSI payments and Medicaid coverage while eligible individuals make attempts to work.

1990- Americans with Disabilities Act: President George H. W. Bush signs the Americans with Disabilities Act (ADA) into law. Modeled on the Civil Rights Act and Section 504 of the Rehabilitation Act, the ADA stems from collective efforts by advocates in the preceding decades and is the most comprehensive disability rights legislation in history. Its employment provisions prohibit discrimination in job application procedures, hiring, advancement and termination and provide for equal access to workers’ compensation; job training; and other terms, conditions and privileges of employment.
1992- Rehabilitation Act Amendments: Amendments to the Rehabilitation Act emphasize employment as the primary goal of vocational rehabilitation (VR). Specifically, they mandate presumptive employability, meaning applicants should be presumed to be employable unless proven otherwise, and state that eligible individuals must be provided choice and increased control in determining VR goals and objectives, determining services, service providers and methods of service provision.

Special Needs Expo

specialneeds.expo_nj

If you are in the New Jersey area, The Special Needs Expos will be hosting an event in New Jersey on September 18th, 2016 from 11:00am to 4:00pm. The expo will be held at Teaneck Marriott at Glenpointe.

The free event is geared towards delivering information to parents, caregivers, professionals and children. Resources and information include special needs schools, camps, recreational sports, respite programs and social service groups. Additional exhibitors include non-profit organizations, special needs trust information and non-traditional therapist.

For further information, click here

Zika Virus and Microcephaly

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Media coverage surrounding the Zika virus outbreak and its link to microcephaly in newborns continue as the number of cases continue to grow including a recent article on the discovery of infected mosquitos found in the state of Florida.

What exactly are the facts?

Zika virus disease is a virus which is primarily transmitted by Aedes mosquitoes that were first identified in Uganda in 1947 in monkeys. The rates of human infections were reported across Africa and Asia from the 1960’s to the 1980’s. It wasn’t until 2015 however when Brazil reported a direct association between the Zika virus and microcephaly. Since then, the number of people infected has grown in alarming rates including the number of children born with microcephaly.

Transmission

Typically, the Zika virus is transmitted through the bite of an infected mosquito. These types of mosquitos are generally found in tropical environments. The virus can also be transmitted through sexual activity and can be detected in body fluids including blood, urine, amniotic fluids, semen, saliva and spinal cord fluids.

Signs and Symptoms

Symptoms may include a slight fever which may appear a few days after a person is bitten by an infected mosquito. Other signs may include conjunctivitis, and muscle and joint pain. The symptoms typically last between 2-7 days. There is currently no cure for the virus.

What is the relationship between the Zika virus and Microcephaly?

The Center for Disease Prevention and Control (CDC) confirmed the Zika virus infection during pregnancy does cause microcephaly and other severe fetal brain defects.

What is Microcephaly?

Microcephaly is defined as a medical condition where the brain does not grow properly resulting in a smaller than normal size head.

microcephaly-comparison

Diagnosis

Often, microcephaly can be diagnosed during pregnancy using an ultrasound test. This is generally done late in the 2nd trimester or early in the third trimester. After a baby is born, a health practitioner will measure the distance around the baby’s head and compare the measurements to the general population standards. Severe microcephaly occurs when the baby’s brain has not developed during pregnancy.

Incidence

Microcephaly is considered rare. In the United States, microcephaly occurs from 2 babies per 10,000 live births to 12 per 10,000 live births. An estimated 25,000 births per year. However, the rates in Brazil have jumped from 0.04 percent to 1.9 percent within the last year.

Causes

Besides the Zika virus, microcephaly may be caused by:

  • German measles
  • Chicken pox
  • Exposure to drugs or alcohol in the womb
  • Chromosomal  abnormalities
  • Decreased oxygen to the fetal brain
  • Severe malnutrition
  • Gene deletion i.e. DiGeorge syndrome

Associated Conditions

Children born with microcephaly may not show any signs or symptoms initially, but may develop the following later:

  • cerebral palsy
  • seizures
  • intellectual disabilities
  • learning disabilities
  • hearing impairments
  • visual impairments

Treatment

There is currently no treatment for microcephaly. Early intervention is vital for the growth and development of the child.

Resources

CDC- Build a Prevention Kit-Provides information on reducing the risk of Zika by creating a prevention kit.

Centers for Disease Control and Prevention – This site provides information on Zika travel notices and countries with the endemic including guidelines for traveler’s visiting family and friends in the affected area.

Live Coverage– complete coverage of the outbreak

U.S. Department of State– Maintains an updated status notice on the virus.

The following medical sites provide additional information on microcephaly including causes, symptoms, test and diagnosis:

Organizations

Cortical Foundation– Dedicated to providing services to educate, advocate, support and improve awareness of cortical malformations

Foundation for Children with Microcephaly– A website created to help and inform parents and families of children who have been diagnosed with microcephaly

Selected News Articles

The following are selected articles on the Zika Virus and Microcephaly:

A mothers battle: Surviving microcephaly in Brazil.

Microcephaly: “It’s not the end of the world.”

Protecting pregnant women in the U.S. from Zika is a top priority, Official says.

Sesame Street’s Elmo and Raya warn kids about Zika

Scientists determine how Zika virus causes brain defects and microcephaly

Zika Revealed: Here’s what a brain-cell killing virus looks like

 

 

Upcoming Events

Abilities Expo

Each year, Abilities Expo serves the community of people with disabilities, their families, caregivers, seniors and healthcare professionals by bringing products and services to a number of cities. The Expo includes workshops, events and exhibitions. Registration is free

New York

Date: April 29-May 1, 2016
Location: New Jersey Convention and Expo
Click Here For More Information
Chicago Expo

Date: June 24-26, 2016
Location: Renaissance Schaumburg Convention Center
Click Here For More Information

Houston Expo

Date: August 5-7, 2016
Location: NRG Center (Formerly Reliant Center), Hall E
Click Here For More Information

Boston Expo

Date: September 16-18, 2016
Location: The Boston Convention and Exhibition Center, Hall C
Click Here For More Information

Bay Area

Date: November 18-20, 2016
Location: San Jose Convention Center
Click Here For More Information

DC Metro Expo

Date: December 2-4, 2016
Location: Dulles Expo Center
Click Here For More Information

 

 

Intellectual Disability

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What is an Intellectual Disability?

DSM-V defines intellectual disability as a disorder with onset during the developmental period that includes both intellectual functioning including abstract thinking, judgment, academic learning, problem solving.  Adaptive functioning including limitations in activities of daily living, communication, social participation, and independent living across multiple environments such as home, school, work and community. Deficits are on the onset during the developmental period.

According the American Association on Intellectual Disabilities (AAIDD), Intellectual Functioning refers to general mental capacity such as, learning, reasoning and problem-solving.

Types

Although historically, the levels of severity was based on I.Q. scores, this has changed to adaptive functioning which determines the levels of support required.

Mild
  • Social Domain- There may be difficulties in regulating emotions and behaviors in an age-appropriate manner. There tends to be a limited understanding of calculated risk, and social judgment.
  • Practical Domain- May need assistance in independent living skills such as grocery shopping, transportation, banking and food preparation.
Moderate
  • Social Domain: Capacity for relationships is evident in ties to family and friends and may have successful friendships across life and sometimes relationships in adulthood.
  • Practical Domain: Can care for personal needs involving eating, dressing and hygiene and as an adult participate in all household task.
Severe
  • Social Doman: Spoken language is limited. Speech may be ingle words or phrases. The individual understands simple speech.
  • Practical Domain: Requires support for all activities of daily living, including meals, dressing and bathing. The person will require supervision at all times. Unable to make responsible decisions regarding self-care.
Profound
  • Social Domain: Has limited understanding of symbolic communication in speech and gestures. The person expresses his or her own desires and emotions through non-verbal communication.
  • Practical Domain: The child or adult is dependent on other people for basic needs including self-care and independent living including health and safety.
Global Developmental Delay

Children under the age of 5 are given this diagnosis when an individual fails to meet expected developmental milestones in several areas of intellectual functioning. This includes children who may be too young to participate in standardized testing.

Causes

Causes can include:

  • Complications during childbirth
  • Problems after birth
  • Chromosomal (Down syndrome, Fragile X syndrome)
  • Metabolic
  • Nutritional
  • Genetic
  • Poverty and cultural factors

Prevalence

  • Approximately 1% of the world population
  • Prevalence for severe intellectual disability is 6 per 100
  • In the United States, Intellectual disability comprises of 3 percent of the general population
  • Nationally, 34% of people with intellectual disability are employed
  • Males are more likely than females to be diagnoses with both mild and severe

 

Transition Planning

IDEA Regulations and Transition Services

The term “transition services” means a coordinated set of activities for a child with a disability that:

  • Is designed to be within a results-oriented process, that is focused on improving the academic and functional achievement of the child with the disability to facilitate the child’s movement from school to post-school activities, including postsecondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation
  • Is based on the individual child’s needs, taking into account the child’s strengths, preferences, and interest.
  • Includes instruction , related services, community experiences, the development of employment and other post-school adult living objectives, and if appropriate, acquisition of daily living skills and functional vocational evaluations.
What is the Transition Process?

The transition process is designed to help students with disabilities move smoothly from school to adult life.

Resources on Transition Planning

Center for Parent Information and Resources– Webpage includes information on IDEA’s requirement on transition and how to include the student in the transition process.

Disability’s.gov’s Guide to Student Transition Planning– Topical links on secondary education and transition, transitioning to adult health care and options for life after high school.

National Association of Special Education Teachers– Great webpage on a variety of topics relating to transition planning including, overview of transition services, types of services covered, recordkeeping, employment planning, travel training, assistive technology and residential placement options.

National Parent Center on Transition and Employment– Website includes information on middle and high school transitioning planning including, IDEA, IEP, college planning and several worksheets on preparing for employment and transition planning.

Understood– article on understanding the transition process.

WrightsLaw– This page contains loads of information on transitioning planning including articles on IEP and transition planning, legal requirement for transition components of the IEP and IDEA 2004.

Angelman Syndrome

ANGLEMAN SYNDROME

Angelman Syndrome is a genetic disorder that affects the nervous system.
Symptoms
  • developmental delay
  • intellectual disability
  • epilepsy
  • microcephaly
  • short attention span
  • happy demeanor
  • hyperactivity
  • hand-flapping
Associated Behaviors
  • tongue thrusting
  • feeding problems during infancy
  • sensitivity to heat
  • frequent drooling
  • attraction to water
Prevalence

Angelman Syndrome  is  a rare disorder and affects 1 in 12,000 to 20,000 a year. Equally to less than 200,000 case a year. Affects all ethnicities and sexes equally.

History

English pediatrician, Dr. Harry Angleman first described Angelman syndrome when he observed 3 children who had similar features including unusual happiness, developmental delays and similar facial disorders. He originally called it the “Happy Puppet Syndrome” based in a 17th century Italian painting by Gian Francesco Coroto.

Causes

In most cases, a gene located on chromosome 15 is generally missing or damaged, in some cases, the individual may have 2 copies of the paternal chromosome 15.

Diagnosis

Diagnosis may include the following:

  • blood test
  • parental DNA pattern
  • missing chromosome testing
  • gene mutation
Treatment

Treatment for Angel Syndrome may include:

  • anti-seizure medication
  • physical therapy
  • communication therapy
  • behavior therapy
Medical Sites

Boston Children’s Hospital

Genetics Home Reference

Mayo Clinic

Medicine Net

Wikipedia

Organizations

Angelman Syndrome Foundation– The mission is to advance the awareness and treatment of Angelman Syndrome through education, information and research.

Foundation for Angelman Syndrome Therapeutics– FAST is an all volunteer organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders.