Category Archives: Children with Special Needs

What is Turner Syndrome?

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February is Turner Syndrome Awareness Month. It is a rare disease that occurs in between one and 2,000 birth only affecting females. Turner Syndrome has several names including Ullrich-Turner Syndrome, Bonnevie-Ullrich-Turner Syndrome. gonadal dysgenesis and 45X. This rare disease is the result of the absence of one set of genes from the short arm of one X chromosome.

Special Needs Challenges

While girls and women with Turner Syndrome usually have normal intelligence, there is a risk of learning disabilities involving spatial concepts including math and memory and ADHD

Teaching Strategies:

Young girls diagnosed with Turner Syndrome during their early development may have delays in learning the alphabet, speech, difficulty in following one command at a time and conceptual difficulties such as up and down. Signs and symptoms of math or dyscalculia challenges include difficulty with counting money, estimating time, losing track when counting and remembering phone numbers or zip codes. The following strategies should be used when teaching students diagnosed with Turner Syndrome:

  • Use flashcards to aid in memory as well as workbooks, games and video’s.
  • Break learning into smaller steps by using a task analysis framework.
  • Administer probing and feedback as a check in
  • Model instructional practices
  • Provide prompts
  • Use visuals such as diagrams, graphics and pictures.
  • Give clear directions
  • Use multiple models including visual and auditory learning models
  • Make sure directions are clear
  • Allow time to process and take notes

 

Resources

Associations
Turner Syndrome Foundation
Turner Syndrome Society of the United States
Turner Syndrome Support Society- UK

What You Should Know About GERD and Developmental Disabilities

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Feeding problems are common in people with an  intellectual/developmental disability. For example, it is reported that 37% of individuals with diplegia or hemiplegia and 86% of individuals with quadriplegia experience GERD. It is very common in people with cerebral palsy and can show up as anemia, failure to thrive and reoccurring infections.

It is usually missed by people who have been feeding and serving food to individuals with disability due to its subtle signs.

What is Gastroesophageal Reflux? (GERD)

GERD occurs when the muscle connecting  to the esophagus is weak and opens under pressure, allowing the stomach contents to flow back into the esophagus. It is the acid from the stomach to the esophagus. this will irritate the lining of the esophagus and causes heartburn. Without treatment, GERD can cause complications.

What causes GERD?

GERD is usually caused by inflammation from the exposure of the esophagus to the stomach acid. The following can cause GERD:

  • diet such as fatty foods, coffee, peppermint and chocolate
  • decreased muscle tone
  • overweight
  • backup in blockage of the intestinal tract.

There are many reasons for the high incidence of GERD in individuals with intellectual disability including immobility and positioning, abnormal postures, medication use and excessive drooling.

What is a developmental disability?

A developmental disability is described as an assortment of chronic conditions that are due to mental or physical impairments or both. For example, you may have a child or an adult with an intellectual disability or perhaps a person diagnosed with cerebral palsy and an intellectual disability. It is also considered a severe and chronic disability that can occur up to the age of 22, hence the word developmental. A developmental disability can occur before birth such as genetic disorders (i.e. cri du chat, fragile x syndrome,) or chromosomes ( i.e. Down syndrome, Edwards syndrome); during birth (lack of oxygen) or after birth up to the age of 22 (i.e. head injuries, child abuse or accidents).

For people with limited communication, the following are possible signs of gastroesophageal reflux:

If you suspect GERD, make arrangements for the person to be evaluated by a physician.

Fragile X Syndrome Teaching Strategies Resources

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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

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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

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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.

Down Syndrome and Obesity

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Obesity is a major health concern and is more common in individuals with Down syndrome than the general population. Obesity is defined as excessive fact accumulation that increases health risk. It is an abnormal accumulation of body fact usually 20% of a person’s ideal body weight.

Medical complications of obesity includes sleep apnea, lung disease, pancreatitis, heart disease, cancer, arthritis, inflamed veins and gout. When the body mass increases, so does the risk of having a heart attack or heart failure.

In a study published by the American Association Intellectual and Developmental Disabilities found a difference between studies on children versus adults with Down syndrome. Children with Down syndrome have consistently been found to exhibit a reduced resting metabolic rate meaning children with Down syndrome are at a great risk for weight gain since they will burn fewer calories. at rest during activities.

Children with Down syndrome also tend to have a condition known as hypothyroidism. Approximately 10 percent of children with Down syndrome have hypothyroidism. As children with Down syndrome get older, eating behaviors change leading to obesity (Approximately 30%). These changes may be due to low muscle tone or inactivity due to thyroid problems or heart conditions.

Exercise and recreation are crucial to the well-being of individuals with Down syndrome. The following are strategies for helping to maintain weight control and to live longer and healthier lives:

  1. Develop a regular exercise program. According to Drs. Chicoine and McGuire, authors of The Guide to Good Health for Teens and Adults with Down syndrome, Exercise should be free of risk. Push ups and weightlifting are not appropriate due to many people with Down syndrome who have issues with the upper 2 vertebrates.
  2. Swimming is an effective exercise. Many pool have walking exercises in the pool as well.
  3. Exercise should be fun, socially and realistic.
  4. For older adults with Down syndrome, look for teachable moments to teach portion control, drinking enough fluids, and eating a well-balanced meal.

Reference

Chicoine, B. and McGuire, B. (2010). The Guide to Good Health for Teen and Adults with Down Syndrome. Bethesda, MD

Early Signs of Rett Syndrome

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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

 

Dysgraphia and Workplace Accommodations

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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.

Signs and Symptoms of Fetal Alcohol Spectrum Disorders

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Fetal Alcohol Spectrum Disorders (FASD) according to the National Organization on Fetal Alcohol Syndrome describes the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These affects may include physical, mental, behavioral, and/or learning disabilities with lifelong implications.

Fetal Alcohol Spectrum Disorders is not a diagnosed rather, it is a term that is used to describe a wide-range of effects on a person whose mother drank alcohol during her pregnancy. Fetal Alcohol Spectrum Disorders, show in three areas: abnormal facial characteristics, slowed growth and the central nervous system.

Fetal Alcohol Spectrum Disorders affects each person differently. Signs and symptoms include the following:

  • Abnormal facial features including a smooth ridge between the nose and upper lip
  • Small head size
  • Shorter than average height
  • Poor coordination
  • Hyperactive behavior
  • Difficulty with attention
  • Poor memory
  • Difficulty in school
  • Learning disabilities
  • Speech and language delays
  • Intellectual disability or low IQ
  • Poor reasoning and judgement skills
  • Sleep and sucking problem
  • vision and hearing problems
  • Seizures
  • Processing information
  • Problems with the heart and kidneys
  • Poor concept of time
  • Trouble getting along with others
  • Staying on task

Aspiration Precautions

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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