7 People With Less Visible Disabilities Talk Misconceptions and Stigma

Source: Teen Vogue
Written By: Paula Akpan

Some disabilities are more immediately apparent than others, particularly if the person uses an aid such as a wheelchair. Others, however, aren’t as obvious. The Invisible Disabilities Association defines invisible disability as “a physical, mental, or neurological condition that limits a person’s movements, sense, or activities that is invisible to the onlooker.” As a result, not only do people with invisible or less visible disabilities have to make day-to-day adjustments to exist in the world around them, but they must also navigate misconceptions about their condition —including the idea that they aren’t disabled “enough.” Click here to read the rest of the story.

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Memorial Day Sensory Activities

Memorial Day is an American holiday observed to honor the men and women who died while serving in the U.S. Military. It originated following the Civil War and became an official holiday in 1971.

Memorial Day is also an opportunity to work on fun Memorial Day activities. Children and adults with special needs lean best when using a multi-sensory approach. This helps to stimulate learning and engage individuals on various levels of learning.

The activities and lessons that I have chosen focus on visual and tactile stimulation and includes both math and reading activities. The craft activities work to improve fine motor skills.

 

American flag on a pencil craft- Printable templates

Craft stick flag– U.S. flag made from craft sticks

Free Memorial Day packs- packets includes clip cards, word problems, fill in and missing numbers

Patriotic Pinwheel– Craft easy to make pinwheel

USA Wreath– Simple red, white and blue wreath made out of construction paper.

 

 

Nowhere to go: Young people with severe autism languish weeks or longer in hospitals

Source: Washington Post
Written By: Christina Jewett | Kaiser Health News

Teenagers and young adults with severe autism are spending weeks or even months in emergency rooms and acute-care hospitals because of a lack of community treatment programs able to deal with their outbursts, according to interviews with parents, advocates and physicians from Maine to California as well as federal and state data.

These young people — who may shout for hours, bang their heads on walls or lash out violently at home — are taken to the hospital after community social services and programs fall short and families call 911 for help. Once there, they sometimes are sedated or restrained for long periods as they wait for beds in specialized facilities or return home once families recover from the crisis or find additional support. Click here to read the rest of the story.

Cystic Fibrosis Awareness Month

According to the Cystic Fibrosis Foundation, cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe overtime. It is a life-threatening disorder that damages the lungs and digestive system. A thick mucus can block the lungs and the pancreas.

In the United States, about 30,000 people are affected by the disease. It is estimated that more than 70,000 people worldwide are living with cystic fibrosis. 1 in every 20 Americans is an unaffected carrier of an abnormal CE gene.

Wikipedia

Common symptoms of cystic fibrosis include:

  • Salty-tasting skin
  • Persistent coughing
  • Shortness of breath
  • Wheezing
  • Poor weight gain in spite of excessive appetite
  • Greasy, bulky stools
  • Repeated lung infections
  • Muscle and joint pain
  • Sinus infections.

Cystic Fibrosis does not affect any cognitive or learning abilities. However, the student may need modifications and supports due to the disease. Teachers with students with cystic fibrosis should be knowledgeable about the disease.

15 Facts About Cri Du Chat Syndrome

Cri-Du Chat (cat’s cry) is a rare genetic disorder that results when a piece of the 5p chromosome is deleted. The name is French for “cry of the cat,” referring to the high-pitched cat-life cry. Other characteristics include intellectual disability, hyperactivity, and delay development. below are some more facts on this rare disease.

  • Cri du Chat is French for cat’s cry or crying cat
  • The syndrome gets its name from the infant cry which is similar to a meowing kitten
  • The cry is due to issues with the larynx and nervous system
  • About one third of children lose the cry by the age of 2 years.
  • It is also known as 5p- (5p minus)
  • The size of the deletion varies among affected individuals
  • Cri du chat syndrome is not inherited.
  • About 10 percent of people with cri du chat syndrome inherit it from an unaffected parent.
  • Is a chromosomal condition that results when a piece of chromosome 5 is missing
  • People diagnosed with cri du chat tend to have distinctive facial features
  • Occurs in an estimated 1 in 20,000 to 50,000 newborns
  • Cri du chat is found in  people of all ethnic backgrounds
  • It was first described by Jerome Lejeune in 1963
  • It is more common in females by a 4.3 ratio
  • It is a rare genetic disorder
  • In some cases, cri du chat syndrome may go undiagnosed
  • Children born with cri du chat syndrome are more likely to have developmental delays
  • The symptoms of cri du chat vary from person to person
  • Both children and adults with cri du chat are often seen as cheerful and friendly.

 

References

Genetic and Rare Diseases Information Center

National Organizations of Rare Diseases

Could motor problems be one source of autism’s social difficulties?

Source: Spectrum
Written By:

For 6-year-old Macey, lunchtime at school is not so much a break from reading and math as it is an hour rife with frustration.

Here’s how Macey’s mother, Victoria, describes Macey’s typical lunch break: In her special-education classroom an hour north of San Francisco, Macey’s classmates gather at a big square table, chattering away and snatching one another’s food. Macey, meanwhile, is sequestered away at a small white table in a corner, facing a bookshelf. She grabs the handle of a spoon using the palm of her right hand, awkwardly scoops up rice and spills it onto her lap. She wants to be at the big table with her peers, but she sits with an aide away from the other children to minimize distractions while she eats. (Victoria requested that we use her and Macey’s first names only, to protect their privacy.)

After lunch, the children spill out onto the playground. Macey, wearing a helmet, trails behind, holding her aide’s hand. She can walk, but she often trips on uneven surfaces and falls over. She tends to misjudge heights, and once pulled a muscle while climbing on playground equipment. When she was 3, she tripped and fell headfirst out of a sandbox, scraping her face, chipping one tooth and dislodging another. Click here to read the rest of the story

Williams Syndrome and Teaching Strategies

Williams Syndrome also known as Williams-Beuren syndrome was discovered in 1961 by J.C.P. Williams, a Cardiologist from New Zealand. Williams Syndrome is a rare disorder with a prevalence of in 7,500 to 20,000 caused by the deletion of genetic material from chromosome 7. Williams syndrome symptoms include heart problems, low birth weight, l problems and developmental delays. 75 are diagnosed with mile to moderate intellectual disabilities or a learning disability.

Physical characteristics include:

Musculoskeletal

Almond shape eyes

Broad forehead

long neck

Longer upper lip

Puffiness around the eyes

sloping shoulders

Small chin

Small upturned nose

Wide mouth

Learning Characteristics

  • ADHD
  • Enjoys music
  • Developmental delay
  • Excellent long-term memory
  • Learning disability
  • Poor fine motor skills
  • Seizures
  • Tactile defensiveness

Teaching Strategies

Students with Mild intellectual disabilities will have difficulty with abstract thinking, executive functioning including planning, prioritizing, and cognitive flexibility. According to the Williams Syndrome Association Website, Children with Williams Syndrome face challenges with processing non-verbal information and displays difficulty with attention to detail.

Strategies should include:

  • Using short sentences
  • Repeat directions
  • Break task into small steps
  • Use concrete examples when introducing new words or concepts.
  • Teach one concept at a time
  • Use a multisensory approach which will help to stimulate learning
  • Utilize visual learning style including the use of flash cars, pictures, images, handouts and colors.

Reference

Williams Syndrome Association

Williams Syndrome- Facts and Statistics

May is Williams Syndrome Awareness Month. It is a rare genetic condition that affects over 1 in 10,000 people worldwide. If you teach in a special needs classroom or work in an adult day habilitation program, it is likely you have experienced working and teaching a student or individual diagnosed with Williams Syndrome. Below you will find some interesting facts and statistics on the disorder:

  • It is a genetic condition that is present a birth.
  • It is a developmental disorder
  • Tend to have a mild or moderate intellectual disability.
  • It is also known as Beuren Syndrome and Williams-Beuren Syndrome.
  • The symptoms were first described by John C.P. Williams in 1961.
  • A year later, German Physician, A.J. Beuren described three new incidents of patients with similar facial features.
  • It is caused by the spontaneous deletion of 26-28 genes on Chromosome #7
  • The deletion is caused by either the sperm or the egg.
  • The deletion is present at the time of conception
  • The most common symptoms of Williams Syndrome includes unusual facial features and heart defects.
  • The diagnosis is typically confirmed after identifying facial features and genetic testing.
  • An individual with Williams Syndrome has a 50% chance of passing the disorder on to their children.
  • Williams Syndrome affects 1 in 10,000 people worldwide.
  • An estimated 20,000 to 30,000 people in the United States are affected.
  • It occurs in both males and females equally
  • It is found in every culture
  • Individuals with Williams Syndrome tend to be overly friendly.
  • People with Williams Syndrome often have difficulty with visual-spatial tasks
  • Congenital heart defects (CHD) occur in approximately 75 percent of children
  • By the age of 30, the majority of individuals with Williams Syndrome have pre-diabetes or diabetes.

 

 

References

Genetics Home Reference

National Organizations for Rare Diseases

William Syndrome Association

Antipsychotics and Autism: Weighing the Benefits, Eyeing the Risks

Source: Interactive Autism Network
Written By: Marina Sarris

Children and adults with autism are sometimes prescribed an array of psychiatric drugs for hyperactivity, poor attention, or challenging behaviors. One type of medication, called antipsychotics, has become something of a “go-to” treatment for the most severe behaviors. According to the latest studies, one in five or six youth with autism has taken them,1,2 along with 43 percent of adults with autism, on average.3 Antipsychotics are the most frequently used type of psychiatric drug in autism.3

That may be because two antipsychotics are the only drugs approved specifically for certain behaviors in children and teens with autism.1 The U.S. Food and Drug Administration gave its stamp of approval to aripiprazole (brand name Abilify) and risperidone (brand name Risperdal) for “irritability” in autism – namely self-injury and aggression – almost a decade ago. More recently, the U.S. Agency for Healthcare Research and Quality weighed the scientific evidence on those medications. It found significant benefits and also “harms,” or bad side effects.5 The drugs reduce challenging and repetitive behaviors when compared to no treatment. They also are associated with significant weight gain, sedation, tremors and movement disorders, it noted. Click here to read the rest of the story