Teaching Children and Adults with Rare Diseases

February 28th is the official day of bringing awareness to rare diseases. According to the National Institutes of Health, in the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. Definition of rare disease vary from country to county. In Europe affect 1in 2,000 people and in Canada, more than 3.5 million or 10percent of the population are diagnosed with a rare disease.

Facts You Should Know About Rare Diseases

  • There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world
  • Each rare disease may only affect a handful of people but taken together directly affected is equivalent to the population of the world’s third largest country.
  • rare diseases currently affect 3.5%-5.9% of the worldwide population.
  • 72% of rare diseases are genetic while others are the result of infections.(bacterial or viral).
  • 70% of those genetic diseases start in childhood
  • About 30 million people or 1 in 10 people in the United States are affected by a rare disease
  • 95% of rare diseases do not have FDA-approval treatment.

Most children diagnosed with rare diseases are more than likely to also exhibit some form of learning disabilities including intellectual disabilities, developmental delays, speech and motor issues. Also, you may find in addition to an intellectual disabilities, students may also have medical issues including epilepsy and ongoing medical concerns.

While it is impossible to know and remember all of the signs and symptoms of rare diseases, the key is to teaching students based on their level of development. The following are useful teaching strategies when teaching students diagnosed with a rare disease:

  1. Teaching should include using multisensory teaching strategies by engaging students on multiple levels by encouraging students to use their senses. This is done by utilizing learning that includes visual (text, pictures, flash cards), auditory (music, songs),tactile (textured items, clay), kinesthetic (games, movement activities), taste ( cooking activities).
  2. Use concrete items and give examples
  3. Use hands on material as much as possible
  4. Break longer, new task into smaller task. Use task analysis.
  5. In some instances, children may have tactile and sensory issues.Signs include over and under reacting to pain, avoiding messy textures, picky eaters, and reacting to loud and sudden noises. Strategies include using a sensory diet and create activities using play doh or silly putty.

The following are articles and links to further information on rare diseases found in this blog:

Aicardi Syndrome– A rare genetic disorder that occurs in 1 in 105,000 to 167,000 newborns in the United states and occurs exclusively in females. People with Aicardi Syndrome often have undeveloped tissue which connects the left and right halves of the brain.

Angelman Syndrome– A genetic disorder that affects the nervous system. Characteristics include developmental delays, intellectual disabilities and speech impairments.

Chromosome 22q11.2 (DiGeorge Syndrome)- a rare disorder that is caused by deletion in chromosome 22 located specifically in the middle of the chromosome in the area. It affects 1 out of 4,000 births. Symptoms include developmental delays, poor muscle tone, learning development and feeding issues.

Cri Du Chat– A rare genetic disorder that results when a piece of the 5p Chromosome is deleted. Characteristics include intellectual disability, hyperactivity, and developmental delay.

Dravet Syndrome– A rare form of epilepsy found in children. Symptoms include developmental delays, sleeping conditions, and chronic infections.

Duchenne Muscular– Occurs in 1 out of 3,600 male infants and is characterized by progressive muscle degeneration. early signs include muscle weakness in the hips, pelvic area, thighs and shoulder affecting delayed motor skills, sitting and walking.

Landau Kleffner– Characterized by the gradual or sudden loss of language in children between the ages of 5 and 7.

Lowe Syndrome– Is a rare genetic disorder that affects the eyes, brain and kidneys. It has a prevalence of 1 in 500,000 and mainly affects males.

Prader Willi– A genetic disorder resulting from an abnormality of chromosome 15. It is found in 1 in 20,000 births affecting both sexes. It is also the most common recognized genetic form of obesity.

Rett Syndrome– A neurodevelopmental disorder occurring mostly in females in which the child exhibits reduce muscle tone, and autistic-like behaviors including hand movements consisting of wringing and waving. It is a rare disorder that affects about 1 out of 10,000 children.

Williams Syndrome– A rare disorder with a prevalence of 1 in 7,500 to 20,000 caused by the deletion of genetic material from chromosome 7. Signs and symptoms include moderate intellectual disabilities and learning disabilities.

 

Teaching Counting to Special Needs Students

Teaching individuals to count is an early prerequisite to working on money skills. Before starting to work on a counting goals, students should be able to count numbers 1- 100. Make sure to break any counting activities into short, easy-to-manage steps and provide clear expectations.

6 methods for teaching money counting-Thought Co.

7 ways to teaching counting to 100- Raising Da Vinci

10 tips to teach numbers and alphabets to children with autism– The Learning App

Counting Strategies– National Council of Teachers of Mathematics

Easy way to teach preschool children to count– VeryWell

Math: Counting and Comparing– The Yale Center for Dyslexia and Creativity

Skip Counting for Autism– Autism Educators

Teaching Counting- The Autism Helper

Teaching Counting Skills– The Autism Helper

Teaching Counting– National Center on Intensive Intervention

Free Printable Angleman Syndrome Factsheet

English pediatrician, Dr. Harry Angleman first described Angelman syndrome in 1965 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. 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. It is considered a developmental disability where children and adults will require ongoing services. Click the link below to download the factsheet.

Download factsheet here

Don’t leave employees with dyspraxia out in the cold

Published by: Real Business Company
Written by: Annie May Noonan

he fact that a dyspraxia sufferer isn’t easy to define makes the job of being understood and supported difficult for those with the condition – and I would know.

I was diagnosed with dyspraxia and dyscalculia at the age of eight after my physical balance and concentration levels suddenly, and very rapidly, deteriorated.

From the outside, I made the transition from my junior to ‘senior’ school as an atypical student, able to play sport and complete both writing tasks and times-tables well. My inability to dress or pack my school bag myself didn’t seem like a big issue until I suddenly could no longer retain my balance and started walking into doors, and falling down flights of stairs. I also developed problems writing and was unable to sit on a chair properly.

After my dual diagnosis, my frustrations around the difficulties I was experiencing lessened. I felt a sense of calm and clarity in the fact I had a condition, and could now learn strategies to make living with it less stressful. After seeing an occupational therapist for a year, I was able to manage my condition, however, my dyspraxia hasn’t gone away. Click here to read the rest of the story/

Attention Skills Strategies

Attention is defined as the ability to keep the mind on something and the ability to concentrate. Skills often include careful observation or listening. The ability for a student to sustain attention, motivation, language, and sensory intervention. Children with autism, ADHD, intellectual disabilities, executive functioning disorders, and Cri du Chat have difficulty sustaining attention over a long period of time.

Strategies they may provide to be useful include:

  • Eye Contact
  • Repeat instructions
  • Provide frequent breaks
  • Use in a leadership role.
  • Provide choices in test-taking
  • Ongoing prompting.

The following are articles on ways to improve concentration and attention:

4 concentration activities for students – Getting Smart

7 in-class activities to improve concentration in children-TEACH

10 Games to boost attention and focus– Heart-Mind Online

Attention Activities– The OT Toolbox

Activities that help develop attention skills– Boise Speech and Hearing Clinic

Attention and Concentration– Kidsense

Brain training activities– Our Journey Westward

Pay attention: Ten steps to improving attention and concentration- ADHD Center

The attention games: Catching focus through fun– Additude

Using play to increase attention– Miss Jaime OT

Everything You Need to Know Before Buying a Weighted Blanket

Published by: Forbes Magazine

It seems like every category of bedding is getting an upgrade these days, whether it’s in the form of memory foam mattresses or custom pillows.

Chances are you’ve heard friends or family discussing these new product types, or maybe even saw someone receive one as a gift this past holiday season. But while weighted blankets have exploded in popularity in recent years, this innovative product isn’t necessarily new — it’s long been used in the special needs community, helping individuals on the autism spectrum, among others. Still, it wasn’t until companies like Gravity Blanket brought their flagship designs to the broader public that people began thinking of it not as a niche medical device, but a general sleep aid for the wider community.

Want to learn what all the hype is about? Here’s everything you need to know about weighted blankets, from their many benefits to how you can find one that perfectly complements your style of sleeping. Click here to read the rest of the story.

10 Valentine’s Day Fine Motor Activites

Here are some fun fine motor activities to do with your students. Children and adults with special needs often face challenges with coordination of the small muscles that affect writing, and grasping objects. These activities will help students both strengthen and maintain abilities in fine motor control and dexterity. For these activities, you will need the following supplies:

  • scissors
  • construction paper
  • glue or paste

50 Easy Valentine’s Day Crafts and Activities- From the Thrifty Kiwi

Brain-Building Valentines Activities– From Integrated Learning Strategies

Heart Bunny Rabbit Craft– From Crafty Morning

Valentine’s Day Fine Motor Activity– From No Time For Flash Cards

Valentine’s Day Fine Motor Activity– From The Resourceful Mama

Valentine’s Day Fine Motor Activity for Preschool– From Pre-K Pages

Valentine’s Day Fine Motor Sparkle Craft –  From The OT Toolbox

Valentine’s Day Tree Paper Craft– From Housing a Forest

Valentine’s Day Scissor Cutting Practice Tray– From I heart Crafty Things

Valentine Heart ORCA Whale Craft- From Crafty Morning

Free President’s Day Activities

Here are some free activities to work on to honor President’s Day. This article includes 3 activities. the first is a President trivia activity. This activity gives the student an opportunity to look up information on past Presidents using their research skills on the computer.

The second activity reinforces counting skills. The student will first identify the coins and then will count each box and place the correct number in the box below. The third activity focuses on fine motor skills giving the student the opportunity to trace and identify the word of each coin.

 

Download the links below:

president day trivia

president day trivia answers sheet

counting presidents

president trace.coins

 

Finding a Creative Outlet With ADHD

Published by: Psychcentral.com
Written by: Neil Petersen

Here’s something I think every ADHDer should try: a creative hobby of some kind.

For me, my main creative outlets are playing and writing music, but the range of creative hobbies you can try is limitless, from writing to drawing and photography to crafting.

Although creative projects can be a fun way for anyone to relax, there’s something about the way the ADHD brain works that seems an especially good fit to any hobby involving some kind of creative process.

The thing about creative activities is that they’re open-ended, and you have room to go in whatever direction your impulses take you. When you’re creating something new, taking off in an unexpected direction isn’t getting distracted, it’s just having a moment of inspiration!

If you’re like most ADHDers, you do many things in daily life that aren’t open-ended in this way. I mean, OK, everyday tasks such as grocery shopping can be a little open-ended, but if you get too creative with them, the results probably won’t be what you intended! Click here to read the rest of the story.

 

What is Turner Syndrome?

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