Fragile X Syndrome Teaching Strategies Resources

Fragile X Syndrome is a genetic disorder and is the most common form of inherited intellectual and developmental disability. It is estimated to affect 1 in 4,000 males and 1 in 8,000 females. Characteristics include learning disorders, sensory issues, speech and language and attention disorders.

Learning challenges include, difficulty in processing information, understanding concepts, poor abstract thinking and cognitive delays. The following sites provide information on teaching students with Fragile X Syndrome.

Best Practice in Educational, Strategies and Curricula (National Fragile X Foundation)

Education Planning for Fragile X Syndrome for Patients (UPMC Children’s Hospital of Pittsburg)

Fragile X in the Classroom (TeAchnology)

Fragile X Syndrome Teaching Strategies and Resources (Teacher’s Gateway to Special Education)

General Educational Guidelines for Students with Fragile X Syndrome (National Fragile X Foundation)

Student Teaching Tips: Helping your students with Fragile X (Magoosh)

Strategies for Learning and Teaching (National Council for Special Education)

Down Syndrome and Heart Disease

Down Syndrome  is a chromosomal disorder caused by an extra cell division that results in an extra 21st chromosome. This causes developmental delays both intellectually and physically. The disorder is named after John Langdon Down, a British physician who was the first to describe the syndrome in 1866. The disorder was later identified by Jerome LeJeune in 1959 as a condition associated by the chromosome structure. Down syndrome is the most common chromosome disorder. Each year, about 6,000 babies are born with Down syndrome.

An estimate of 1 in 700 babies born. The life expectancy of people with Down syndrome increased between 1960 and 2007. In 1960, an average person with Down syndrome lived to be 10 years old compared to 2007 with people with Down syndrome living to 47 years of age. Often, people born with Down syndrome may develop health issues and a cognitive development ranging from mild to severe. There is often a speech delay and children may lag behind with fine and gross motor skills. Physical characteristics may include a flat nasal bridge, single, deep creases across the center of the palm, protruding tongue, large space between the large and second toe, low muscle tone, almond shape to the eyes.

 

The causes of Down syndrome is due to an extra copy of chromosome 21 in every cell. This is the most common form of Down syndrome. It represents 94% of all cases of Down syndrome. Congenital  heart failure affects 300,000 or 40% of individuals with Down syndrome. There are 3 types:

  • atrioventricular septal defect (AV Canal)- a condition caused by the Septum failure to close properly. This occurs during the embryonic stage and results in a large opening at the center of the heart.
  • Persistent Ductus Arteriosus- when a tube that continues to exists after a baby is born. It is a persistent opening between the two major blood vessels leading from the heart.
  • Tetralogy of Fallot- a heart condition composed of four abnormalities: 1) Ventricular Septal Defect 2) a narrowing of the passage from the right ventricular to the lungs 3) an over enlarged right ventricle due to blood back up 4) an over enlarged aorta, which carries blood from the left ventricle to the body.

Congenital Heart Disease can range from severe to mild. Typically, students do not require special care. For those with more severe heart issues, be aware of the signs and symptoms of a student heart disease is getting worse. This include:

  1. Arrhythmia, an abnormal heart rhythm that can cause the heart to beat fast or too slow
  2. Congenital heart failure- when the heart cannot pump enough blood and oxygen to meet the needs of the body.
  3. Pulmonary hypertension- a type of high blood pressure that affects the arteries in the lungs and the right side of the heart.

Signs and symptoms include:

  • shortness of breath
  • fatigue and weakness
  • swelling
  • rapid or irregular heartbeat
  • persistent cough

Things to be aware of in students with Heart Issues:

Tires easily or becomes short of breath after exercise

May have exercise restrictions

May need extra time to go and from classes

 

Resources

Related articles

It’s hard to imagine a time when children with disabilities did not have access or the rights to an equal education as those students without disabilities. Prior to 1975, many children with disabilities were living in large institutions or went to private schools.

President Gerald Ford signed into the Education For All Handicapped Children Act (Pubic Law-94-142) now knowns as the Individuals with Disabilities Education Act (IDEA). The purpose of IDEA is to protect the rights of infants, toddlers, children and youth with disabilities and to provide equal access to children for children with disabilities. The following list describes the 13 categories of IDEA eligibility including the definition below:

A child with a disability is defined as a child evaluated as having an intellectual disability, hearing impairment (including deafness), a speech or language impairment, visual impairment (including blindness), a serious emotional disturbance, an orthopedic impairment, autism, traumatic brain injury, an other health impairment, a specific learning disability, deaf-blindness, or multiple disabilities who need special education and related services.

  1. Autism means developmental disability significantly affecting verbal and nonverbal communication and social integration, generally evident before age 3, that adversely affect a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.
  2. Deaf-blindness- defined as having both visual and hearing impairments. The combination of which causes such severe communication and other developmental and education needs that they cannot be accommodated in special education programs.
  3. Deafness- a hearing impairment that is so severe that the child is impaired in processing linguistic information through hearing, or with or without amplification, that adversely affects a child educational performance.
  4. Emotional disturbance- a condition exhibiting one or more of the following characteristics over a long period of time
  5. Hearing impairment- an impairment in hearing, whether permanent or fluctuating that adversely affects a child’s performance but that is not included under the definition of deafness.
  6. Intellectual disability- significantly lower general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affect a child’s educational performance.
  7. Multiple disabilities- A combination of impairments (such as intellectual disability-blindness or intellectual disability-orthopedic impairment). The combination causes severe educational needs that they cannot be accomplished in special education program solely for one of the impairments.
  8. Orthopedic impairment- a severe orthopedic impairment that adversely affects a child’s educational performance. The term includes impairments caused by a congenital anomaly, impairments caused by diseases (e.g. Poliomyelitis) and impairment causes (e.g. cerebral palsy, amputations, and fractures or burns that cause contractures)
  9. Other health impairments- having limited strength, vitality, or alertness including a heightened alertness to environmental stimuli that results in limited alertness with respect to the educational environment that is due to chronic or acute health problems such as asthma, ADHD, diabetes, epilepsy, heart condition, sickle cell anemia and Tourette syndrome which adversely affects a child’s education performance.
  10. Specific learning  disability- a disorder in  one or more of the basic psychological processes involved in understanding or in using language spoken or written that may manifest itself in the imperfect ability to listen, think, speak, read, write, spell or to do mathematical calculations including conditions such as perceptual disabilities, brain injury, dyslexia and developmental aphasia.
  11. Speech or language impairment- a communication disorder such as stuttering impaired articulation, a language impairment, or a voice impairment that adversely affects a child’s educational performance.
  12. Traumatic brain injury- An acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment or both. Traumatic brain injury applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition, language, memory, attention, reasoning, abstract thinking, judgement, problem-solving, sensory, perceptual motor abilities and information processing and speech.
  13. Visual impairment including blindness- an impairment in vision that, even with correction, adversely affects a child’s educational performance. The term includes both partial sight and blindness.

Early Signs of Rett Syndrome

Rett syndrome is a neurodevelopmental disorder occurring mostly in females in which the child exhibits reduced muscle tone, autistic-like behaviors, stereotyped hand movements consisting of wringing and waving. It is a rare disorder that affects about 1 out of 10,000 children and is the most genetic causes of severe intellectual disability in females. Due to similarities to autism and cerebral palsy, it is often misdiagnosed.

Signs similar to autism include outburst, eye contact avoidance, lack of social reciprocity, sensory issues and loss of speech. Signs of Rett syndrome similar to cerebral palsy include short stature, difficulty with walking, gait movement difficulties and delayed ability to walk.

Typically, children born with Rett syndrome develop normally until the age of 6 and 18 months and reach typical development milestones including eye contact, rolling over and grasping objects. As children grow, motor development begins to slow such as walking and muscle movement. The first signs is usually the loss of muscle tone where the child’s arms and legs appear “floppy.”

Other early signs include:

  • Loss of communication abilities
  • Unusual eye movement
  • Breathing problems
  • Irritable and crying often
  • Intellectual disability
  • Seizures
  • Scoliosis
  • Sleep disturbance
  • Irregular heartbeat
More Resources on Rett Syndrome

Over 30 Online Resources on Rett Syndrome

 

Facts and Statistics- Ataxia

Ataxia is a rare disorder that affects both children and adults. I was quite surprise to find that very little statistics have been conducted on ataxia. this may be due to the understanding that Ataxia is not a specific disorder, rather, a condition can cause ataxia including multiple sclerosis, head trauma, cerebral palsy and infections.

Ataxia affects a child’s coordination, balance and speech while some children are born with ataxia as a result of genetics, others develop it in a progressive matter. Signs and symptoms of Acute Cerebellar Ataxia include:

  • Frequent stumbling
  • Impaired coordination affecting arms or legs
  • Unsteady gait
  • Uncontrolled eye movement
  • Difficulty performing fine motor task
  • headaches

The following are facts and statistics on the Ataxia disorder:

  • It is a degenerative disease of the nervous system
  • Symptoms, often mimic being drunk in adults such as slurred speech
  • Age of symptom can vary from childhood to late adulthood
  • rare recessive genetic disorder
  • occurs between 1 out of 40,000 and 1 out of 100,000
  • The word ataxia refers to clumsiness or a loss of balance and coordination
  • The ataxia gene was first identified in 1993
  • Ataxia is inherited
  • Ataxia is a sign of an underlying disorder
  • It is caused by damage to different areas of the central nervous system
  • The most common symptom in children is an unsteady gait
  • In some cases, ataxia can present itself rapid while in others, it is progressive.
  • The most common cause of acute ataxia in children are excessive drug ingestion and drug intoxications
  • There are from 50 to 100 different types of Ataxia.

Dysgraphia and Workplace Accommodations

Some might be surprised to learn that there are several types of learning disabilities. Dysgraphia is describes as a learning disability that affects writing, spelling and fine motor skills. Dysgraphia is a neurodevelopmental disorder that can occur as a stand alone disorder or part of a co-occurring disorder with other disabilities such as ADHD, Autism, and Dyslexia. Typically it is diagnosed or discovered in the early years when children are beginning to learn how to write. Most adults often remain undiagnosed.

Early Signs of Dysgraphia

Signs and symptoms of dysgraphia generally begin to show up when children began to lean how to write. Early signs of Dysgraphia include:

  • Inconsistent spacing between letters
  • Poor spatial planning
  • Poor spelling
  • Unable to read own handwriting
  • Poor fine motor skills
  • Omitted words
  • Writes slow
  • Pain in hand from writing
  • Messy unorganized papers
  • Difficulty organizing thoughts on paper
  • Illegible printing and cursive letter formation
  • Slopping handwriting
  • Tight, cramped pencil grip
  • Tires quickly when writing
  • mixes upper and lower case or irregular sizes and shapes of letters.

Download a free dysgraphia checklist

Signs and Symptoms in the Workplace

A early signs that rarely disappears is having a “sloppy” handwriting. The person when writing leaves out letters at the end of a sentence, difficulty reading own handwriting after meetings, trouble with filling out routine forms, displays unorganized papers on the desk, difficulty thinking and writing at the same time and tends to mixes upper and lower case letters when writing. The person will also avoid writing when possible and show a preference to using a computer or texting neatness, line spacing, staying inside margins and capitalization rules.

Strategies to Use in the Workplace
  1. If you have a smart phone, you can use the device to record meetings, interviews or instructions that are given to you.
  2. Assitive technology such as tablets, computers and Apps are also useful in transcribing information
  3. Take the time to organize your desk before you leave work in the evening. Prioritize your workflow and create a plan for the next day.
  4. Pre-write. Before you take on the task of writing, create an outline on paper.

Aspiration Precautions

Children and adults with developmental disabilities often face challenges with eating, drinking and swallowing disorders than the general population. It is estimated that adults with intellectual disabilities require support from caregivers during mealtime. It is common among people who have a diagnosis of cerebral palsy, intellectual disability, physical  disability and muscular dystrophy.

Dysphasia is a medical term used to describe any person having difficulty swallowing foods and liquids taking  more energy and time to move food from the mouth to the stomach. Signs of dysphasia may include:

  • Drooling
  • Food or liquid remaining in the oral cavity after swallowing
  • Complaints of pain when swallowing
  • Coughing during or right after eating or drinking
  • Extra time needed to chew or swallow
  • Reflux of food

Dysphasia can lead to aspiration. Aspiration is defined when food, fluid, or other foreign material gets into the trachea or lungs instead of going down the esophagus and into the stomach. when this occurs, the person is able to cough to get the food or fluid out of their lungs, in some cases especially with children and adults with disabilities may not be able to cough. This is known as Silent Aspiration.

A complication of aspiration is Pneumonia which is defined as inhaling food, saliva, and liquids into the lungs

According to the Office of People with Developmental Disabilities Health and safety Alert, factors that place people at risk for aspiration include:

  • Being fed by others
  • Weak or absent coughing, and/or gag reflexes, commonly seen in people with cerebral palsy.
  • food stuffing and rapid eating/drinking
  • Poor chewing or swallowing pills
  • GERD- the return of partially digested food or stomach contents to the esophagus
  • Providing liquids or food consistencies the person is not able to tolerate such as eating whole foods.
  • Seizures that may occur during eating and/or drinking.

How to recognize signs and symptoms of Aspiration:

  • Choking or coughing while eating or just after eating
  • Drooling while eating or just after eating
  • Eyes start to water
  • Shortness of breath
  • Fever 30 minutes after eating
Intervene immediate if there are signs of aspiration:
  • Stop feeding immediately
  • Keep the person in an upright position
  • Call 911 if the person has difficulty or stops breathing and no pulse
  • Start rescue breathing

Minimize aspiration from occurring by serving the appropriate food texture and liquid consistency. If you are not sure of the right consistency, check with your health care provider. The following are pictures of food consistencies.

Courtesy of OPWDD

Courtesy of OPWDD

Whole. Food is served as it is normally prepared; no changes are needed in
preparation or consistency

Courtesy of OPWDD

1 ” Pieces cut to size. Food is served as prepared and cut into 1-inch pieces
(about the width of a fork).

Courtesy of OPWDD

1/4 Pieces Cut to Size. Food is cut with a knife or a pizza cutter or placed in a food
processor and cut into ¼ -inch pieces (about the width of a #2 pencil)

Courtesy of OPWDD

Ground. Food must be prepared using a food processor or comparable equipment
until MOIST, COHESIVE AND NO LARGER THAN A GRAIN OF RICE, or relish
like pieces, similar to pickle relish. Ground food must always be moist. Ground meat
is moistened with a liquid either before or after being prepared in the food processor
and is ALWAYS served with a moistener such as broth, low fat sauce, gravy or
appropriate condiment. Hard, dry ground particles are easy to inhale and must be
avoided.

 

Courtesy of OPWDD

Pureed. Food must be prepared using a food processor or comparable equipment.
All foods are moistened and processed until smooth, achieving an applesauce-like or
pudding consistency. A spoon should NOT stand up in the food, but the consistency
should not be runny. Each food item is to be pureed separately, unless foods are
prepared in a mixture such as a soup, stew, casserole, or salad.

Aspiration Precautions

  • Make sure the person eats slowly and takes small bites of food
  •  Ensure the person takes small sips of liquids
  • Focus on the person’s swallowing
  • Make sure the person remains upright for a minimum of thirty minutes after eating

Data and Statistics- Fetal Alcohol Spectrum Disorders (FASD)

  • Fetal alcohol disorders range from mild intellectual and behavioral problems to extreme disorders that lead to profound disabilities or premature death.
  • FAS are not heredity: they are 100 percent preventable the sole cause is prenatal alcohol exposure.
  • Of the children heavily exposed to alcohol before birth, about 40 percent are estimated to exhibit fetal alcohol disorders, with 4 percent affected by full blown fetal alcohol syndrome.
  • Women who give birth to a child with FAS are 800 times more likely to give birth to subsequent children with the syndrome than are women who have never given birth to a child with the syndrome.
  • Each year, there are four times as many infants born with fetal alcohol disorders as there are infants born with muscular dystrophy, spina bifida and Down syndrome combined.
  • 15 out of 100 women of childbearing age do not know that drinking alcohol during pregnancy is dangerous.
  • FASD affects about 40,000 newborns each year
  • A survey of pediatrician reported in the journal Pediatrics revealed that only 13 percent routinely discussed the risk of drinking during pregnancy with their adolescent patients.

  • According to the Center for Substance Abuse Prevention, 1 in 9 pregnant women binge drink during the first trimester.
  • FASD are 100% incurable
  • 60% of individuals with FASD find themselves in legal trouble at some point in their lives.
  • There is a high prevalence of epilepsy (5.9%) in individuals with FASD compared with individuals who did not have the disorder.
  • 94% of individuals heavily exposed to alcohol in the womb are diagnosed with ADHD
  • It is estimated a lifetime cost for one individual with FASD is 2 million
  • 50% of adults with FASD were clinically depressed

SEPTEMBER IS FETAL ALCOHOL SPECTRUM DISORDER AWARENESS MONTH

School Accomodations for Students Diagnosed with Fetal Alcohol Spectrum Disorders

The Centers for Disease Control and Prevention (CDC) describes Fetal Alcohol Spectrum Disorders as a group of conditions that can occur in a person whose mother drank during pregnancy. The effects of the fetal alcohol disorders includes many learning challenges including hyperactivity, poor attention span, memory issues, coordination challenges, anxiety, speech and language delays, problem-solving issues, difficulty staying on task, behavioral challenges and social interaction.

Some children with FASD have co-occurring disorders or are often mis-diagnosed.

The following are the most common disorders:

  • Oppositional Defiant Disorders (ODD)
  • Attention Deficit Hyperactive/Inattentive Disorder (ADHD)
  • Learning Disabilities
  • Speech and language delays
  • Anti-Social Personality Disorder

The following are Accommodations that will help students succeed:

  • Use a multi-sensory approach to learning
  • Allow extra time for testing assessments
  • Chunk the test into parts
  • Reduce distractions by using preferential seating
  • Allow the student to take breaks
  • Use oral test
  • Provide oral instructions
  • Use a checklist for the student to use
  • Allow the student to use a timer
  • Use repetition
  • Check in with the students for understanding and provide feedback
  • Teach calming strategies
  • Use assistive technology
  • Use social stories
  • Teach social skills

DIY Sensory Activities for your Child With Autism

Dysfunctional sensory system is a common Symptom of Autism as well as other developmental disabilities. In this, sometimes one or more senses can either be hypo or hyper sensitive to stimulation and can lead to behaviors like rocking, spinning, and hand- flapping, irritability and hyperactivity.

There are three basic senses that are critical for our survival- tactile, vestibular, and proprioceptive. Sensory Integration techniques or therapies of these senses can facilitate attention and awareness, and reduce overall arousal.

In this article, each of these sensory systems will be covered. There also will be a Do-it-yourself (DIY) activity mentioned to overcome dysfunction and improve functioning of these sensory systems. Click here to read the rest of the story.