Down Syndrome Timeline

PDF version of article

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

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

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

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

Fetal Alcohol Spectrum Syndrome Awareness Month

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

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

October 14-20 Invisible Disabilities Week

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

2017 Disability Awareness Month and Observances

Our 2018 disability awareness month article blog is here

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 seems 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.

awareness-header

January

January 4- World Braille Day

National Birth Defects National Month

February

February 15- International Angelman Day

Duchenne Muscular Dystrophy Awareness Week February 13-19

March

Down Syndrome Awareness Week March 18- 24 (United Kingdom)

Brain Injury Awareness Month

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

Multiple Sclerosis Month

National Tuberculosis Awareness Month

Social Work Month

Trisomy Awareness Month

April

Auditory Processing Awareness Month

Autism Awareness Month

Occupational Therapy Month

May

May 5- Cri Du Chat International Day

International Cri Du Chat Awareness Week May 1-7

Asthma and Allergy Awareness Month

Apraxia Awareness Month

Better Speech and Hearing Month

Cystic Fibrosis Awareness Month

Mental Health Awareness Month

Prader Willi Awareness Month

Williams Syndrome Awareness Month

June

Helen Keller Deaf-Blind Awareness Week June 24-30

Dravet Syndrome Awareness Month

Tourette Syndrome Awareness Month

July

National Fragile X Awareness Month

August

Aicardi Syndrome Awareness Month

September

Craniofacial Acceptance Month

Hydrocephalus Awareness Month

National Spinal Cord Injury Month Awareness

Sickle Cell Anemia Awareness Month

October

October 6- World Cerebral Palsy Day

OCD Awareness Week- October 8-14

ADHD Awareness Month

Down Syndrome Awareness Month

National Disability Awareness Month

National Dyslexia Awareness Month

National Physical Therapy Month

Rett Syndrome Awareness Month

Sensory Processing Awareness Month

Special Needs Law Month

Spinal Bifida Awareness Month

November

November 4- National Stress Awareness Month

22q Awareness Month

Epilepsy Awareness Month

December

December 3- International Day of Persons With Disabilities

 

 

 

 

 

 

10 Speech Therapy Blogs You Should Be Reading

Speech therapy is a key component in the life of a child with a disability. When it comes to speech therapy, there are so many blogs that provide an abundance of resources for other speech therapist, teachers and parents. Finding the right ones however can be a challenge.

speechblog2

The following blogs provide tons of information, resources and tips on speech language topics. Here are 10 speech therapy blogs worth checking out (in no particular order).

Beautiful Speech Life– Creates and develops therapy materials for fellow SLP’s and teachers. This website provides freebies, language materials and quick therapy tips.

Nicole Allison Speech Peeps– This website offers speech language resources on a variety of topics and an evidence-based intervention series.

PediaStaff– A resourceful blog providing informative news information and article blogs from speech language websites.

Simply Speech– A site with freebies and great blog ideas and activities

Speech 2 U- Provides resources, freebies and therapy topics on communication, social language, social language, organization, plus more!

Speechy Musing– Provides speech therapy resources on a variety of topics. Age range includes, birth to 3, elementary school and middle school on the subject of articulation, language and AAC; The site also includes a blog for fellow speech therapist.

Sublime Speech– Provides therapy to children with severe and profound disabilities. Website includes information on apps, articulation, language, materials and social skills

Teach Speech 365. Includes freebies, giveaways and therapy topics.

The Dabbling Speechie– A website for speech and language pathologist and parents offering a variety of resources on articulation, language and social skills.

The Speech Room News– Specializing in pediatric speech and language therapy, Jenna’s site provides resources for speech language pathologists and educators. The website includes free resources, and treatment topics on articulation, social language, preschool and more.

 

26 Great Resources on Special Needs Clothing

Children and adults with disabilities with sensory issues, autism, ADHD, down syndrome and cerebral palsy often find challenges in finding clothing that meets the need of feeling good and appropriate.

25clothing.resources

Challenges may also include difficulties in handling buttons and closures. Here are 25 resources that focus on shoes, outerwear, and adaptive clothing.

Adaptive Clothing

Adaptations By Adrian- Adaptive clothing including side zippers, wide band elastic waist for custom-made capes, wheelchair, pants, shorts adult protectors and cape protecting scarf.

CAPR-Style– Located in the U.K, adaptive clothing for adults and children including feeding tube covers.

Designed By Dignity– Adaptive clothing fashion clothes for men and women.

Down Design Dream– Adapting Clothing for children and adults with special needs

Easy Access Clothing– Adaptive clothing for adults and children.

Professional Fit Clothing– Adaptive clothing for adults and children including adults bibs, clothing protectors and nightware.

Rackety’s- Based in the U.K, products include adaptive clothing for children and adults such as vests, outdoor clothing, and nightwear.

Something Sew Special– Handmade adaptive clothing for children with special needs including bibs, ponchos, bodysuits and bandanas.

Special Kids Companywhere every child should be seen and not hidden!  International provider of bodysuits for older children with special needs including PEG/tube fed children aged 2-14 years old.  Available on all Amazon platforms (.com/.ca/.co.uk/.fr/.de/.es/.it)

Specially For You Inc.– Custom clothing for children with physical disabilities. Products include night wear, dresses, tops, one piece outfits and hooded poncho’s.

Tender Ivy– Onesie garment designed for protecting vulnerable areas.

Wonsie– Based in Australia, products include special needs onesie bodysuits for older children and adults.

Sensory Clothing

Children and adults with sensory processing issues may find it difficult wearing certain types of clothing. The following stores sell items that are for sensitive skin, medically fragile and pressure points.

Cool Vest– products includes children’s cooling vest.

Independent You– Adaptive outerwear, sportswear and sleepwear.

Kozie Clothes– Adaptive medical and sensory clothing for medically fragile and special needs babies and children.

No Netz– Anti-chafe swimwear for boys and men.

SmartKnit Kids– Seamless products for children with sensory issues. Products include, socks, undies, tees and bralettes.

World’s Softest– Socks for sensitive skin

Shoes for AFO’s

The following are stores that sell shoes that fit over orthotics.

Ablegaitor- Orthopedic shoes for children. Can be used without AFO’s.

Hatchbacks– Children’s orthopedic shoes for use with orthotics.

Healthy Feet Store– An online orthopedic shoe and footcare store including AFO’s accommodations.

Keeping Pace– Children’s orthopedic footwear designed for AFO’s.

Shoby Shoes– Custom-made orthopedic shoes and support boots for special needs children

Soft Star Shoes– Will customize shoes to work wit AFO’s and DAFO’s.

Coats for Wheelchairs

Coats for individuals who use wheelchairs  made need special clothing. The following online stores, specialize in adaptive outerwear for children and adults.

Koolway Sports– Based in Ontario, Canada, Koolway Sports items include blankets, hoods, and capes.

Silvert’s– Adaptive clothing for men and women including footwear and wheelchair clothing.

Weighted Vest

Weighed vest can be used for children and adults with autism, ADHD, Cerebral Palsy, Muscular Dystrophy and a sensory processing disorder.

e-Special Needs– provides a selection of weighted vests and clothing

Fun and Function– Includes items such as explorers vest, fleece hoodies and compression vests.

Intellectual Disability

hydrapany.ribbonClick here for a printed copy

What is an Intellectual Disability?

DSM-V defines intellectual disability as a disorder with onset during the developmental period that includes both intellectual functioning including abstract thinking, judgment, academic learning, problem solving.  Adaptive functioning including limitations in activities of daily living, communication, social participation, and independent living across multiple environments such as home, school, work and community. Deficits are on the onset during the developmental period.

According the American Association on Intellectual Disabilities (AAIDD), Intellectual Functioning refers to general mental capacity such as, learning, reasoning and problem-solving.

Types

Although historically, the levels of severity was based on I.Q. scores, this has changed to adaptive functioning which determines the levels of support required.

Mild
  • Social Domain- There may be difficulties in regulating emotions and behaviors in an age-appropriate manner. There tends to be a limited understanding of calculated risk, and social judgment.
  • Practical Domain- May need assistance in independent living skills such as grocery shopping, transportation, banking and food preparation.
Moderate
  • Social Domain: Capacity for relationships is evident in ties to family and friends and may have successful friendships across life and sometimes relationships in adulthood.
  • Practical Domain: Can care for personal needs involving eating, dressing and hygiene and as an adult participate in all household task.
Severe
  • Social Doman: Spoken language is limited. Speech may be ingle words or phrases. The individual understands simple speech.
  • Practical Domain: Requires support for all activities of daily living, including meals, dressing and bathing. The person will require supervision at all times. Unable to make responsible decisions regarding self-care.
Profound
  • Social Domain: Has limited understanding of symbolic communication in speech and gestures. The person expresses his or her own desires and emotions through non-verbal communication.
  • Practical Domain: The child or adult is dependent on other people for basic needs including self-care and independent living including health and safety.
Global Developmental Delay

Children under the age of 5 are given this diagnosis when an individual fails to meet expected developmental milestones in several areas of intellectual functioning. This includes children who may be too young to participate in standardized testing.

Causes

Causes can include:

  • Complications during childbirth
  • Problems after birth
  • Chromosomal (Down syndrome, Fragile X syndrome)
  • Metabolic
  • Nutritional
  • Genetic
  • Poverty and cultural factors

Prevalence

  • Approximately 1% of the world population
  • Prevalence for severe intellectual disability is 6 per 100
  • In the United States, Intellectual disability comprises of 3 percent of the general population
  • Nationally, 34% of people with intellectual disability are employed
  • Males are more likely than females to be diagnoses with both mild and severe

 

Happy Holidays!

 

HAPPY HOLIDAYS2015

Special Needs Resource Blog will take a break during the holidays and will return Monday, January 4, 2016 with new information, tools and resources to post including more downloadable free tools and templates Monday thru Thursday. I am excited and look forward to sharing more resources with you in the new year.
Thanks to all of you for following my blog this year. Wishing you and your families joy and peace all through the holidays and throughout the new year. May the spirit of the holidays be with you throughout the new year.  🙂   🙂