30 Resources for World Down Syndrome Day

Today is World Down Syndrome Day. A campaign designed to create a single voice for advocating for the rights, inclusion and well-being of people with Down Syndrome. Resources on this page include information on inspiring articles and facts on people with Down Syndrome.

Post From Special Needs Resource Blog:

20 Facts You Should Know About Down Syndrome

Down Syndrome Characteristics

Facts About Down Syndrome (Infographic)

Mosaic Down Syndrome Resources

Signs of Autism and Down Syndrome

Top Books On Down Syndrome For Parents and Professionals

Down Syndrome Organizations
Band of Angels: http://www.bandofangels.com/-

Established in 1994, Band of Angels provides support for individuals with Down Syndrome and their families. The website offers links on Down Syndrome support groups and a litany of topics including, adoption, autism and education.

Down Syndrome International https://www.ds-int.org/

A U.K. based international organization comprising a membership of individuals and organizations from all over the world. Disseminates information on Down Syndrome including prenatal diagnosis, early intervention, education, medical, health, employment, aging and human rights. Down Syndrome International also promoted World Down Syndrome Day (March 21) as a day dedicated to people with Down Syndrome.

Global Down Syndrome http://www.globaldownsyndrome.org/

Provides fundraising, education and governmental advocacy for the Linda Crnic Institute for Down Syndrome. Resources available on the website include, information on research, medical care and facts on Down Syndrome.

International Down Syndrome Coalition: http://theidsc.org/

Dedicated to helping and advocating for individuals with Down syndrome from conception and throughout life. Offers support to parents who are new to the Down syndrome diagnosis by connecting parents to each other.

National Association for Down Syndrome http://www.nads.org/

NADS is the oldest organization in the United States serving individuals with Down syndrome and their families. Also provides families with information and resources that will enable them to access appropriate services and educates the public about Down syndrome.

National Down Syndrome Congress http://www.ndsccenter.org/

The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information. When we empower individuals and families from all demographic backgrounds, we reshape the way people understand and experience Down syndrome.

National Down Syndrome Society http://www.ndss.org/

NDSS provides resources to new and expectant parents and offers a toll-free helpline and email services. NDSS also focuses on transitions , wellness and education

 

The following are articles highlighting stories around the country on Down syndrome:

Clemson Student With Down Syndrome To Compete In Pageant

Couple with Down Syndrome Celebrate 22 Years of Marriage

Displaying The Myths of Down’s Syndrome

First Person With Down Syndrome Finishes Local Half-Marathon

Funny Down Syndrome Ad Will Change The Way You Feel about “Special Needs”

Gerber Baby 2018: Lucas Warren is the company’s first spokesbaby with Down Syndrome

Get To Know Madeline Stuart, The World’s First Supermodel With Down Syndrome

Swimmers with Down Syndrome Find Empowerment in the Pool

Walgreens Features Model With Down Syndrome

Woman With Down Syndrome Starts Her Own Bakery

Inspiring Video’s

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What is a Developmental Disability?

March is Developmental Disabilities Awareness month! Although I blogged  the definition of developmental disabilities here, I wanted to give you more information besides the Federal regulation. Quite often, people are confused between the definition of an intellectual disability and 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).

The disability is likely to occur indefinitely meaning the person will require some type of ongoing service throughout their lives. Finally, the person must show limitations in 3 or more of the following areas of major life activities:

  1. Self-care– brushing teeth, hand-washing and combing hair independently
  2. Receptive and expressive language-ability to understand someone talking and to also be understood
  3. Learning– ability to read and write with understanding
  4. Mobilityability to move around without any assistance
  5. Self-direction– time management, organization
  6. Capacity for independent living– requiring no supervision
  7. Economic self-sufficiency – having a job  and purchasing what one needs

Here are some examples of a developmental disability:

Does everyone with a disability also have a developmental disability?

The answer is no. there are people with disabilities such as epilepsy and cerebral palsy simply have a disability based on the criteria listed above. However, many people with developmental disabilities quite often have a combination of disabilities. For example a child with autism may also have seizures and an intellectual disability or an adult may have cerebral palsy, intellectual disability and epilepsy. In addition there are many people in the spectrum of autism who also have ADHD and so forth.

So what’s the difference between an intellectual disability and a developmental disability?

A person with an intellectual disability falls under the category of a developmental disability meaning you can have an intellectual disability and a developmental disability. check here for the definition of an intellectual disability, you will see they are quite similar. Below is an infographic created by Centers on Disease Control:

An Infographic on Developmental Disabilities.

 

 

Signs of Autism and Down Syndrome

Studies show that 5 to 39% of children with Down syndrome are also on the autism spectrum. There are overlaps in some of the symptoms which delays the signs and symptoms of autism. This observation is slowly growing and informing parents to look for specific signs and symptoms.

The importance of getting the diagnosis
Most often children with Down syndrome are treated for the characteristics of having Down syndrome which overlooks giving children the appropriate treatment for Autism such as social skills and sensory issues. A child or young adult with both diagnosis will likely experience aggressive behaviors, meltdowns, and show signs of regression during their early development. The following are signs and symptoms to look for in your child, or student:
  • Hand flapping
  • Picky eater
  • Echolalia
  • Fascination with lights
  • Staring at ceiling fans
  • History of regression
  • Head banging
  • Strange vocalization
  • Anxiety
  • Seizure Disorder

If you suspect your child is dual diagnosed, make an appointment for a medical work up which should include:

  • audiological evaluation
  • lead test
  • complete blood count (CBC)
  • Liver function test
  • EEG

20 Task Box Resources To Use In Your Classroom or Home

Task boxes (also known as work boxes) are structured work systems created by Division TEACCH t the University of North Carolina Chapel Hill. This system allows the student to work independently on a task for a specific time in a supportive environment.  Task boxes are now used for students with a variety of disabilities including students required pervasive levels of support.

 

There are 3 types of task boxes: stacking- Helps with eye-hand coordination and fine motor skills; sorting- may break activities by size, color, texture, shape and flavor and fine motor- strengthens the smaller movement in the wrists, hands and fingers.

The following sites include information on how to set up a task box system in your classroom or in your home.

How I Set Up My Task Box System ( Delightfully Dedicated)

How to Set Up An Independent Workbox (Breezy Special Ed)

How to Start a Task Box System (Autism Adventures)

Task Box Set Up- (Autism Adventures)

Websites that will give you ideas on creating task boxes, and the material needed.

Autism Classroom Workbox System (Teaching Special Thinkers)

Fine Motor Morning Work Bins (Differentiated Kindergarten)

Assembly Work Task (Autism Classroom News and Resources)

Free Math Printable Task Box for Special Education ( My Creative Inclusion)

Higher Level Academics in Task Boxes (Mrs. P’s Specialties)

How I Use Workboxes in My Classroom (Creating and Teaching)

Pre-Vocational Work Boxes (SPED Adventures)

Quick and Easy Task Box Ideas (Little Miss Kim’s Class)

Task Boxes: A Hands On Approach to Life Skills (Therablog)

Task Boxes for Autistic Children (Love to Know)

Structured Work Boxes (University of Mary Washington)

Ways to Up the Ante in Your Work Task System (The Autism Vault)

Winter Task Boxes (You Aut-aKnow)

Work Boxes in Autism Classrooms (Noodle Nook)

Work Box Task Ideas (The Autism Helper)

Work Task (Breezy Special Ed)

 

2018 Disability Awareness Month and Observances

Annual awareness observances are sponsored by federal, health and non-profit organizations. Awareness campaigns serve the purpose of informing and educating people on a certain causes. Each year, the number of special needs organizations bringing awareness to specific disabilities and disorders seem to grow. Awareness activities range from one day to a month.
Here is a calendar of major special needs awareness months, weeks, and days. Most websites include awareness toolkits, promotional materials and fact sheets. Since it is still early in the year, some of the campaigns still have 2017 campaigns on their websites. I will add new information once the changes are up on the websites.

January

National Birth  Defects Month

January 4- World Braille Day

January 24- Moebius Syndrome Awareness Day

February

February 15- International Angelman Day

February 28- Rare Disease Day

March

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

Multiple Sclerosis Month

Social Work Awareness Month

Trisomy Awareness Month

March 1- Self-Injury Day

March 1- International Wheelchair Day

March 20- Brain Injury Awareness Day

March 21- World Down Syndrome Day

March 26- Purple Day for Epilepsy

April

April 2- World Autism Awareness Day 

May

Better Hearing and Speech Month

Mental Health Awareness Month

National Asthma and Allergy Awareness Month

Prader Willi Awareness Month

Williams Syndrome Awareness Month

May 1- Global Developmental Delay Day

May 15- Tuberous Sclerosis Global Awareness Day

May 5-12- Cri du Chat Awareness Week

May 8-14- Brain Injury Awareness Week

June 17- CDKL5 Awareness Day 

June 23- Dravet Syndrome Awareness Day (Canada)

Tourette Syndrome Awareness Month

 

July

Disability Pride Month (NY)

July 12- Disability Awareness Day (UK)

July 16- Disability (ADA) Awareness Day

National Fragile X Awareness Day

September

Craniofacial Acceptance Month

Duchenne Muscular Dystrophy Awareness

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

October

ADHD Awareness Month

Down Syndrome Awareness Month

National Disability Employment Awareness Month

National Dyslexia Awareness Month

Occupational Therapy Awareness Month

October 6- World Cerebral Palsy Day

OCD Awareness Week

National Physical Therapy Month

Rett Syndrome Awareness Month

Special Needs Law Month

Spinal Bifida Awareness Month

November

22q Awareness Month

Epilepsy Awareness Month

November 1- LGS Awareness Day

November 7- National Stress Awareness Day

November 15- World Ohtahara Syndrome Awareness Day

December

December 3- International Day of Persons with Disabilities

 

 

 

Helping Children Understand Person First Language


Pubished by: ASD
Written By: Nicole Dezarn

Person first language is an important ethical matter often discussed in the field of special education and disability advocacy. The idea that the important descriptor for a person is not their disability but that the disability is something that the person has is fundamental in framing the mindset that having a disability doesn’t mean that a person is less or incapable of success. It can be challenging enough to broach this subject with adults but how do we help children to understand what person first language means and why it is so important? I felt it might be helpful to share an approach with which I have had success. Click here to read the rest of the story

Choking Prevention for People with Developmental Disabilities

Children and adults with developmental disabilities have a higher risk of choking compared to the general population.

Risk Factors Include:

Some medical conditions that increase a person’s risk of choking are:

  • Cerebral Palsy
  • Seizure disorders
  • Neurological and muscular disorders
  • Down Syndrome
  • Brain Injury
  • Muscular Dystrophy
  • Inability to swallow certain food textures and liquids
  • Medication side effects which decrease voluntary muscles
  • Dysphasia (difficulty swallowing)

Other contributing factors include:

Eat or drink too fast

Have poor posture when eating

Swallow non-edible objects (PICA)

The following foods put people at greater risk:

  • Hotdogs served whole
  • Hard candy
  • Popcorn
  • Sandwiches
  • Broccoli
  • Raw carrots
  • Nuts

Teaching Material on Choking

Arizona Department of Economic Security

Eunice Kennedy Shriver-Dysphasia, Aspiration and Choking

Ohio Department of Developmental Disabilities

New York State Choking Prevention Resources

Washington State Department of Social and Health Services

State Agencies Choking Alerts

Georgia Department of Behavioral Health and Developmental Disabilities

Minnesota Mental Health and Developmental Disabilities 

New Jersey Health and Safety Alert Choking

Autism and Wandering Resources (update)

Studies show that nearly half of children with autism attempt to wander off or bolt from a safe supervised place (Autism Speaks). Children with Angleman Syndrome also tend to have an obsession with water and will tend to wander if water is nearby. The following resources includes wandering kits, articles and additional resources on the topic of wandering.

What is Wandering?

When a person, who requires some level of supervision to be safe, leaves a supervised, safe space and/or the care of a responsible person and is expected to potential dangers such as traffic, open water (drowning), falling from a high place , hypothermia, heatstroke, dehydration.

Types of Wandering

  • Goal-Directed Wandering- wandering with the purpose of getting to something ( a place of obsession, water, etc.).
  • Non goal-directed wandering- Wandering with no purpose, random from one place to another.
  • Confusion Wandering-Wandering due to disorientation or confusion.
  • Bolting/fleeing- The act of suddenly running or bolding, usually to quickly get away from something, or in negative reaction to an event, anxiety or stress.
 Facts and Statistics
  • Roughly half, or 49%, of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings.
  • In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement.
  • More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number.
  • 32% of parents reported a “close call” with a possible drowning.
  • 40% of parents had suffered sleep disruption due to fear of elopement.
  • half of families with elopers report they never received advice or guidance about elopement from a professional.
Source: Interactive Autism Network research report: Elopement and wandering (2011)
Source: National Autism Association, Lethal Outcomes in ASD Wandering (2012)

Caregivers Information

Autism elopement and wandering kit for families (Parenting Chaos)

Big Red Safety Toolkit (National Autism Association)

28 page toolkit that provides information on preventing wandering. The toolkit includes the following information:

  • Caregiver checklist
  • Family wandering emergency plan
  • swimming lessons tool
  • Root-causes scenario and strategies tool
  • Caregivers log
  • How to get tracking technology in your town.

First Responder Resources

First Responder Checklist– A checklist for first responders developed by the National Autism Association

First Responder Notification Form

First Responder Tips

GPS Tracking Technology

The AngleSense Guardian Kit

  • Comes with a GPS device, embedded SIM card, customized wearables and a magnet key for parents $39.00 monthly service plan.

7 tracking devices to find a lost child with autism (Friendship Circle)

Articles

5 simple ways to prevent wandering in children with autism (Autism Parenting Magazine)

Autism and Wandering (SFGate)

Autism and Wandering: How ABA can help keep kids safe. (HuffPost Parents)

Teaching safety skills to children with autism (Our Crazy Adventures in Autismland)

The autism epidemic that can no longer be ignored (HuffPost Parents)

Wandering: A hazard for more than a third of kids with autism (U.S. News)

Wandering & Autism: Elopement within the classroom (Autism Classroom Blog)

Wandering & Autism: Students who flee, bolt, run and elope (Autism Classroom Blog)

Resources on Teaching Scissor Skills

One of the ways to improve fine motor skills is helping children and adults develop cutting skills also help with pre-writing skills and pencil control. Below are resources that will help in developing and teaching scissor skills.

Cutting Skill Development

2 years- snips with scissors

2.5 years- Cuts across a 6-inch piece of paper

3.5 years- Cuts along a 6-inch line

4.5 years- Cuts out a circle

6-7 years- Cuts a variety of shapes and pictures.

Resources on Teaching Scissor Skills

5 easy ways to introduce scissor skills

How to teach a child to use scissors

How to use scissors

Scissor cutting skills: Why they are important

Teaching kids how to use scissors

Teaching preschoolers to use scissors

The importance of teaching your child how to use scissors

Tips for teaching scissor cutting skills

Practice Scissor Skills- The following links below include practicing cutting straight lines, curved lines and circles, zig-zag lines and mixed lines.

10-page scissor skills packet (Mama’s Learning Corner)- geared towards preschoolers and kindergartners.

12 free shapes and cutting page (www.mpmideas.com)- geared towards preschool aged children

Construction truck scissor cutting practice sheets (MO & MH)- Kids will practice cutting lines.

Cut, copy and glue for spring (Your Therapy Source)- Free 3-page packet in black and white. Includes a butterfly, ice cream cone and a snail.

Free cutting and coloring pack (Tot Schooling)- Cutting pack features straight, diagonal, curved and zig zag lines.

House scissor practice (Teaching Station)- Download free worksheets. Includes shapes of circles, squares, triangles, and rectangulars.

Printable preschool cutting busy box (Fun with Mama)- post includes ways to teach kids how to use scissors and develop cutting skills

Rocket scissor practice (Teaching Station)- Kids will practice cutting and pasting shapes to make a rocket.

Snake spiral worksheet (www.education.com)- Kids can both color and cut out the spiral design.

Trolls, hair-cutting (Tot Schooling Net)- Several different levels of difficulties.

4 Tips On Task Initiation For Children and Adults

Task Initiation is often a challenge for children and adults with an executive functioning disorder. For a child, it may be lack of initiative in doing homework while for an adult, it may include forgetting or putting off paying bills. Children and adults with task initiation issues generally have a diagnosis of autism, ADHD, Intellectual disability or a learning disorder.

Signs of a task initiation impaired executive functioning skill would be someone having difficulty in getting started on a task and keeping the effort needed in order to complete the task. A child or an adult require external cues in order to complete the task. Also, it will require understanding what is expected and understanding the task. Here are a few strategies:

  1. Limit Distractions. In the classroom any type of added sensory input can defer the student from getting started in their school work.
  2. Create a List. Visual support will help to increase getting the work done for a school-age child, you may want to create a to-do list which the steps are broken down into smaller steps. When a person with an executive function is given a task, it may be overwhelming, making it more difficult to get started.
  3. Use Cues. A clock or a timer will help the child or adult stay on time and understanding the amount of time it will take to complete a task
  4. Break task down. Create where the work is done in chunks so that the work will not be as overwhelming for the student.