Down Syndrome Timeline

According to the CDC, Down Syndrome is the most common chromosomal disorder. Each year 6,000 babies are born with Down syndrome which is estimated to be about 1 in every 700 babies. Here is a timeline showing Down syndrome progression over the years:

Down Syndrome Timeline

1866- British Physician John Langdon Down, first described the genetic disorder as “Mongoloid” based on patients similar characteristics.

1876- An initial association between premature “senility” and Down syndrome is discovered.

1929- Life expectancy is approximately 9 years of age

1932- Abnormal distribution of chromosomes was first suggested as the cause of Down syndrome.

1946- Life expectancy is approximately 12 years of age.

1948- Evidence between Alzheimer’s and Down syndrome is first published.

1959- Dr. Jerome Lejeune discovered Down syndrome is the result of an abnormality in the chromosomes.

1959- The term Trisomy 21 is used on the medical community to describe Down syndrome.

1960- Researchers discover a type of trisomy called translocation

1961- Researchers discover a type pf trisomy called Mosaicism. 

1965- The World Health Organization (WHO) accepts the name Down syndrome as the standard name to use.

1970- Life expectancy is approximately 25 years of age.

1976- Amniocentesis comes into common use in the United States

1987- A gene associated with Alzheimer disease is discovered on Chromosome 21

1994- CDC announces he prevalence of Down syndrome from 1893-1990 was 1 in 1087.

1997- Life expectancy is approximately 49 years of age.

2006- Life expectancy is approximately 60 years of age

Reference

Centers for Disease Control and Prevention

Global Down Syndrome Foundation

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How To Organize Clothing In A Residential Setting

Organizing clothes in a regular household can be challenging. Imagine striving to clean, organize and store clothes when it is 12 people living under one roof! This can often lead to clothing getting mixed up causing further confusion.

There are a number of steps you can take that will help to alleviate this often challenging task:

  1. Create an inventory list for each person. This list should include a tri-annual schedule when clothing are sorted. Choose a time in the spring, fall and winter when to sort out clothing. An inventory list should also list the types of clothing and the number of items for each. Below is an example of an inventory.  You will find a free template here: clothing_inventory
  2. Spend a day with each person and go through the closet taking everything out. Sort the clothing and throw out anything that is torn or broken. People may have a favorite item they might like to wear. Look to see if it can get either fixed or replaced
  3. Once clothing is organized, choose a day with the person and determine a laundry day. While it can be easier to try to do wash clothing for several people at a time, you risk the chance of mixing up clothing.
  4. Always make sure if possible, the person participates as much as they can in this household task. It encourages independence and individuality at the same time.

I like to hear tips you use for clothing organizing for multiple people.

 

 

Global Developmental Delays

Global developmental delays describes when children do not meet their developmental milestones. Generally from the age of 2 months to 5 years old. Although each child is different in their development, milestones are established in order to determine functional skills on age specific tasks.

Delays can occur in the following area:

Gross motor- Involves the use of larges muscle groups such as walking, crawling and standing. May impact children diagnosed with cerebral palsy.

Fine Motor- Small movement in the fingers used for drawing, painting, buttoning, coloring, and shoe tying.

Speech and language delay- A delay in language may be due to motor-oral problems.

Cognitive- Delays can be caused by, infections, ,metabolic, toxic, trauma, and chromosomal abnormalities (Down syndrome, Turner syndrome, etc.)

Social/Emotional Skills- Shows signs of delay in responding and interacting with other people. Common cause may be autism spectrum disorder

The following articles provide information on understanding global developmental delays:

6 things I’d tell the parent who just heard the word ‘Global Developmental Delay’

Causes and symptoms of developmental delays

Developmental delays and disabilities

Global Developmental Delay

How a child develops

Recognizing developmental delays in your child

Types of developmental delay in children

Understanding developmental delays

What causes developmental delay?

What you need to know about developmental delays

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

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

July 15- Disability Pride Parade (NY)

July 15- Disability Awareness Day (UK)

July 22- 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