CDKL5 and Teaching Strategies

CDKL5 is a neurodevelopmental disorder that includes signs of early-onset epilepsy. In fact 90% of children diagnosed with CDKL5 disorder are more likely to develop epilepsy. CDKL5 is derived from a gene and one of the most common causes of genetic epilepsy. Children diagnosed with CDKL5 also face many other developmental challenges as well.

Image by PublicDomainPictures from Pixabay

Facts

It is a neurodevelopment disease caused by the CDKL5 gene.

It impacts cognitive, motor, speech and visual function

It affects 1 in 40,000-60,000 children each year.

CDKL5 was previously called STK9

The disorder mainly affects females

The cause of CDKL5 deficiency disorder is unknown

Signs of CDKL5 deficiency includes epileptic seizures

Starting within hours of birth to 2 years of life, some children often go for 24 hours or more without sleeping.

Signs and Symptoms of CDKL5
Teaching Strategies

The following are teaching strategies that can used when teaching children with the CDKL5 disorder:

  • Provide frequent breaks
  • Use assistive technology
  • Provide extra time
  • Repeat directions
  • Use concrete items when possible
  • Break task into smaller steps
  • Teach in sequence
  • Use a multisensory approach
  • Use hand-on material

 

Children's Hospital.org
Genetic Home Reference
International Foundation for CDKL5 Research
Rare Diseases.org

 

 

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Sensory Eating is not Picky Eating

Published by: Speaking of Autism

I want you to imagine that you are a kid once again, maybe ten or eleven years old. You are sitting down in the evening with your family for dinner. The table is set, and your parents bring out what will be tonight’s entree: a cut of cold, raw chicken breast. It’s slimy pink mass slides onto the plate in front of you, and soon after your whole family is chowing down on the raw cuts of meat. You can’t stand to even watch anyone else eat the raw chicken, let alone fathom yourself choking it down. Yet, despite the very real disgust and aversion you feel towards the raw chicken breast, somehow it’s you who are strange for not wanting to eat it. Maybe you’re called “picky” or told that you simply need to and just learn to enjoy raw chicken like everyone else. Maybe you go hungry every night at dinner because the only thing being served are items as aversive as the cuts of raw chicken. Click here to read the rest of the story.

Free Printable Money WorkSheets

Summer will be here before you know it. If you want your student/ child or individual to continue practicing math skills, I have provided below 4 money sheets that you can printout and make several copies. The money sheets allows the child to work on both IEP and ISP goals including:

  1. Identifying coins
  2. Matching coins
  3. Visual discrimination
  4. Counting
  5. Transition skills
  6. Visual learners

 

Burger King.Worksheet. This is a fun activity especially for children, students and adults that enjoy going to Burger King. The individual will choose the picture and subject the cost of the item from $10.00.  This activity people with dysgraphia, increase money skills, attention skills, task initiation skills and works well as a pre-trip to Burger King. focusing on transition skills.

Matching Dimes Worksheet– The matching dime activity is great for goals on counting and identifying a time. it is useful for children adults that are visual learners and provides hands on materials. The students learning ability will increase with the use of actual dimes.

Circle Nickle Worksheet – This worksheet give the individual an opportunity to work on counting, identify various coins as well as explaining the value of the coin. The worksheet also provides additional support and increases visual discrimination skills.

Dime Counting – helps the child, student or adult with special needs practice counting skills and visual memory.

My plan for the rest of the year is to provide you with more resources that are more functional and allows you to download information.

 

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.

 

 

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

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

What you should know about severe autism

Media is slowly getting better in it’s portrayal of people with autism in both movies and television, while many still hold onto to the perception of “Rain Man”, I do believe we are moving in the right direction. Still, little is discussed or talked about when it comes to children and adults with severe autism. Some may refer to severe autism as “low functioning when in fact autism is a spectrum in both symptoms and behaviors and varies from person to person.

Children and adults with severe autism often display the following signs :

  • Impaired social interaction
  • Difficulty in communicating- both expressive and receptive
  • Obsessive compulsive disorder
  • anxiety
  • aggressiveness
  • self-injurious

According to the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), there are 3 levels of severity based on social communication impairments, restricted, and patterns of behaviors. The severity level (Level 3) is defined as requiring very substantial support. For example the person may exhibit very limited initiation of social interaction and extreme difficulty with coping and change. signs may include an indifference in others, using negative behavior to communicate, very little or echolalia, sensory sensitivity will vary from severe to none, may be self-injurious and have an intellectual disability.  Below you will find articles on understanding severe nonverbal autism:

5 nonverbal children that found their voices

Autism: How do you communicate with a non-verbal child

Helping nonverbal kids to communicate

I have nonverbal autism…Here is what I want you to know

Nonverbal autism: Symptoms and treatment activities

Missing brain wave may explain language problems in nonverbal autism

Overview of nonverbal autism

What makes severe autism so challenging?

Why being nonverbal doesn’t mean being non-capable

Why children with severe autism are overlooked?

 

Miami Lakes Deli Opens Its Doors Employing Adults With Autism

deli

Published by: South Florida Reporter

Mayor Cid had the idea to open his own Mayor’s Café while having breakfast at the popular Mayor’s Café in Pembroke Pines. During his visits, he often met Miami Lakes residents enjoying a sit-down breakfast.

“There was a big need for this type of breakfast venue in Miami Lakes,” he said. Cid partnered with two local residents, Danny Delgado and Jeffrey Rodriguez, to open Mayor’s Café. Click here to read the rest of the story