Developmental Disability Awareness Ribbons

Posted on July 15, 2024 by specialneedsresourcetrainingblog

Awareness ribbons in recent history began when Penney Laingen used the ribbon as a symbol of vigilance (from the song, Tie a Ribbon Around the Ole Oak Tree) when she tied a yellow ribbon around the oak tree in her front yard when her husband, Bruce Laingen. a top-ranking U.S. diplomat was a hostage during the Iran hostage crisis in 1979. This was followed by the red ribbon during the AIDS epidemic and the pink ribbon bringing awareness to breast cancer.

Ribbons have long been used as a way to bring awareness and raise consciousness for a cause. Ribbons and disability awareness have evolved from bringing awareness to various disability topics such as sensitivity, inclusion and advocacy to including various formats. People are using social media as a means to promote awareness including using hashtags and setting up Facebook pages specifically for disability awareness.

Disability awareness and acceptance is being done through the use of awareness ribbons.

The Ribbons below focus on ribbons that bring awareness to developmental disability and special needs issues. including individuals with neurodevelopmental and intellectual disabilities. Awareness is only a part of educating and training people on disability awareness. Training activities should also include acceptance and understanding.

Awareness Ribbons

Autism Spectrum Disorder- The Autism ribbon continues to evolve overtime. The puzzle piece was first used in 1963 by a parent and board member of the National Autistic Society in London indicating the puzzling, confusing nature of autism. In 1999, the puzzle piece ribbon was adopted as the universal sign of autism awareness by the Autism Society reflecting the complexity of the autism spectrum. Overtime, the both the puzzle and ribbon have become a symbol for seeing autism as something that is puzzling an needs to be fixed rather than acceptance. A more positive symbol includes the infinity loop used as a symbol for acceptance rather than awareness.

Angelman Syndrome- Blue

Apraxia- Light Blue

Attention Deficit Hyperactivity (ADHD)- Orange

Cerebral Palsy- Green

Cri Du Chat- Blue

Developmental Disabilities- Silver or light blue

Di George Syndrome- Teal

Down Syndrome- Blue and Yellow

Dravet Syndrome- Purple

Duchenne Muscular Dystrophy- Light Green

Epilepsy- Purple

Fetal Alcohol Syndrome Disorder- Silver and Blue

Fragile X Syndrome- Teal

Hydrocephalus- Light Blue

Prader Willi- Orange

Rare Disease- Zebra Stripe

Rett Syndrome- Purple

Sensory Processing Disorder- Blue or Orange

Sickle Cell Anemia- Burgundy

Spina Bifida- Yellow

Spinal Cord Injuries- Green

Tourette Syndrome- Teal

Trisomy 18- Light Blue

Turner Syndrome Purple Butterfly

Williams Syndrome- Burgundy

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Burgundy Awareness Ribbon

Sickle Cell Anemia
Williams Syndrome

Blue Awareness Ribbon

Angelman Syndrome
Cri Du Chat

Green Awareness Ribbon

Cerebral Palsy
Spinal Cord Injuries

Light Blue Awareness Ribbon

Apraxia
Developmental Disabilities
Hydrocephalus
Intellectual Disabilities
Trisomy 18

Orange Awareness Ribbon

Attention Deficit Hyperactivity Disorder (ADHD)
Prader Willi Syndrome
Sensory Processing Disorder

Teal Awareness Ribbon

Fragile X Syndrome
DiGeorge Syndrome
Tourettte Syndrome

Purple Awareness Ribbon

Dravet Syndrome
Epilepsy
Rett Syndrome
Turner Syndrome

Blue and Yellow Awareness Ribbon

Down Syndrome

Light Green Awareness Ribbon

Duchenne Muscular Dystrophy

Silver and Blue Awareness Ribbon

Fetal Alcohol Syndrome Disorder

Yellow Awareness Ribbon

Spina Bifida

Observance and Awareness Month

February

Turner Syndrome Awareness

March

Trisomy18

Kidney Awareness

Multiple Sclerosis

Cerebral Palsy

Developmental Disabilities

April

Autism

Auditory Processing Disorder

May

Apraxia

Cri Du Chat

Cystic Fibrosis

Global Developmental Delay

Williams Syndrome

June

Aphasia

CDKL5

Dravet Syndrome Day

Helen Keller- Deaf- Blind

July

Fragile X Syndrome

National Craniofacial Awareness and Prevention Month

September

Duchenne Muscular Dystrophy

Fetal Alcohol

Hydrocephalus

Sickle Cell Anemia

Spinal Cord Injuries

October

ADD/ADHD

Down Syndrome

Dyslexia

Rett Syndrome

Sensory Processing Disorder

November

22Q

Epilepsy

Lennox-Gastaut

December

West Syndrome (Infantile Spasm)

Updated on 7/15/24

Turner Syndrome Awareness Month

Posted on February 2, 2024 by specialneedsresourcetrainingblog

Date: February 1-February 29, 2024

Symbol: Butterfly

Color: Purple

What is Turner Syndrome?

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. The syndrome was first described by American endocrinologist Henry Turner in 1938.

Characteristics of Turner syndrome include facial and physical appearance, cognitive characteristics, clinical issues and mental healthy symptoms. No two people with Turner syndrome are exactly the same therefore, not everyone will display the same characteristics:

Facial Appearance

down-turning eyelids
low-set and prominent ears
small jaw
high narrow roof of mouth
neck webbing

Physical Appearance

broad chest with widely spaced nipples
narrow fingernails and toenails
hand and feet swelling
short fingers
smaller than average height
skin moles

Medical Issues

chronic middle ear infections
hearing loss
heart, liver and kidney abnormalities
delayed puberty
undeveloped ovaries
greater risk for diabetes
high risk for celiac
high risk for osteoporosis
GERD
scoliosis
hypertension
high risk obesity
may not have menstruations

Cognitive

normal intelligence in some cases
issues with visual spatial
nonverbal memory
executive function issues
difficulty in understanding social cues
behavior issues.

Mental Health

low-self-esteem
anxiety
depression

Treatment

There is currently no cure for Turner syndrome. Thee following are used to treat including therapies:

Growth hormones
Estrogen replacement therapy

Update: 1/29/24

National Birth Defects Prevention Month

Posted on January 1, 2024 by specialneedsresourcetrainingblog

Start: January 1-January 30, 2024

January is National Birth Defects Prevention Month and is a nationwide effort to raise awareness of birth defects and the impact on families.

Birth defects can be diagnosed during pregnancy or after the baby is born. Birth defects occur when there are structural changes during the first three months of pregnancy affecting one or more parts of the body. About 1 in 33 babies (3%) are born in the United States is born with a birth defect. Birth defects are also the leading cause of infant deaths accounting for 20% of all infant deaths.

Types of birth defects include:

Anencephaly
Spina Bifida
Cleft Lip/Cleft Palate
Down Syndrome
Microcephaly
Muscular Dystrophy
Edwards Syndrome
Patau Syndrome

Not all birth defects are preventable however, the following are steps you can take for a healthy baby:

Try to prevent infections.
Wash your hands regularly.
Get 400 units of folic acid every day.
See a healthcare professional on a regular basis.

Updated 12/29/23

What to Know About Dyslexia and ADHD

Posted on October 31, 2022 by specialneedsresourcetrainingblog

Published by: Psych Central
Written by: Gia Miller

They have some shared symptoms, but dyslexia and ADHD are separate conditions. Here’s how to to tell them apart and tips for managing these conditions.

Dyslexia and attention deficit hyperactivity disorder (ADHD) are two neurological conditions that can make learning more difficult.

The former affects 11%, and the latter affects between 5 to 20%, but it’s difficult to estimate precisely.

Sometimes, the symptoms of ADHD and dyslexia can be hard to tell apart — as both can cause trouble with reading and writing. But even though the symptoms can appear similar, the underlying reasons for the symptoms are very different.

What is dyslexia?

Dyslexia is a condition that impacts your ability to use language. You may have trouble matching letters to sounds or recognizing the sounds in words. This can make it hard to read and understand what you’re reading.

Dyslexia can also make spelling, writing, or math more difficult. Click here to read the story

When Rett Symptoms Change

Posted on October 24, 2022 by specialneedsresourcetrainingblog

Published by: Rett Syndrome News
Written by: Jackie Babiarz

My 12-year-old daughter, Cammy, has Rett syndrome. Some days, Rett syndrome has Cammy.

During the early-onset stage, which typically occurs between 6 and 18 months of age, children may experience abnormal hand movements, difficulty sitting independently, and speech or language problems. Cammy was no different.

Repetitive hand movement is a hallmark sign of Rett, and Cammy had been hand mouthing from 12 months on. Her left hand was constantly in her mouth, causing sores. Other kids with Rett may wring their hands or pull out their hair. At 18 months, it was this behavior that tipped off Cammy’s physiatrist to the fact that she had Rett syndrome. Shortly after Cammy was diagnosed, her sister, Ryan, was born. Their two-year age gap began closing within a couple months when Ryan showed evidence of already being stronger than Cammy. Click here to read the rest of the story.

5 common learning disabilities

Posted on October 10, 2022 by specialneedsresourcetrainingblog

Published by: Washington Times Herald
Written by: Metro Creative Connection

Students are often told that hard work is the path to success. Individuals who have learning disabilities may have to work even harder than their peers to be successful.

The Learning Disabilities Association of America says learning disabilities occur due to neurobiological and/or genetic factors that alter the way the brain functions. This can affect one or more cognitive processes related to learning and interfere with various skills, potentially preventing a person from acquiring the same amount of knowledge as others of the same age.

There are many learning disabilities, and the following are five of the most common, according to LD Resources Foundation, Inc., a nonprofit organization that helps find solutions to those who are affected by learning disabilities.

1. Dyslexia: This learning disability can impede a person’s ability to read and comprehend text. Students may have trouble with phonemic awareness, or the way to break down words. Similar problems with phonological processing, or distinguishing between similar word sounds, can occur as well.

2. ADHD: Attention deficit/hyperactivity disorder is marked by behaviors that make it difficult to pay attention and stay on task. The Masters in Special Education, a resource for finding work and study in special education concentrations, says there is debate over whether ADHD is a learning disability. But there is no denying that ADHD can impede success in school settings.

Click here to read the rest of the story

Fetal Alcohol Syndrome is preventable

Posted on September 19, 2022 by specialneedsresourcetrainingblog

Published by: Daily News
Written by: Kevin Green

FASD (Fetal Alcohol Syndrome Disorder) is a condition that results from alcohol exposure during the mother’s pregnancy. FASD causes brain damage and growth problems. The problems vary from child to child, but defects are not reversible.

The fetus can be affected regardless of the amount or frequency of alcohol consumed by the mother. Each year 630,000 babies with FASD are born globally. The average life expectancy of people with FASD is 34 years of age, with extreme causes accounting for 44% of all deaths. Not only will alcohol lead to various physical defects including brain malformation, but mental issues and neurological problems. FASD is 100% preventable.

Disabilities can vary from abnormal appearance, shorter height, hyperactivity, learning disabilities, poor judgment skills, vision and hearing problems, and problems with the heart, kidneys, and bones.

Distinctive facial features include small eyes, an exceptionally small upper lip, a short upturned nose, and a smooth skin surface between the nose and upper lip.

Drinking alcohol during pregnancy allows alcohol to enter the bloodstream and reaches the developing fetus by crossing the placenta. Alcohol causes higher blood alcohol concentrations in your developing baby than in the mother’s body because the fetus metabolizes the alcohol slower than an adult does. Alcohol interferes with the delivery of oxygen and optimum nutrition to your developing baby.

Exposure to alcohol before birth can harm the development of tissues and organs, causing permanent brain damage in your baby. Click here to read the rest of the story

WHAT IS CDKL5 DEFICIENCY DISORDER?

Posted on June 13, 2022 by specialneedsresourcetrainingblog

Published by: International Foundation for CDKL5 Research

CDKL5 deficiency disorder is a rare developmental epileptic encephalopathy caused by mutations in the CDKL5 gene, and this can manifest in a broad range of clinical symptoms and severity. The hallmarks are early-onset, intractable epilepsy and neurodevelopmental delay impacting cognitive, motor, speech, and visual function. Although rare, the occurrence is believed to be ~1:40,000 -75,000 live births, making it one of the most common forms of genetic epilepsy.

The CDKL5 gene provides instructions for making proteins that are essential for normal brain and neuron development. The CDKL5 protein acts as a kinase, which is an enzyme that changes the activity of other proteins by adding oxygen and phosphate atoms (a phosphate group) at specific positions. Researchers have not yet determined which proteins are targeted by the CDKL5 protein.

CDKL5 was first identified in 2004, it stands for cyclin-dependent kinase-like 5, and its location is on the X chromosome. The X chromosome is one of the sex chromosomes; females have two X’s, and males have one X and one Y chromosome. The letters are an abbreviation of the scientific name of the gene, which describes what it does. The CDKL5 gene was previously called STK9. Many cases have been identified in boys, but because of the location of the gene, CDD mainly affects girls.

We do not fully know the cause of CDKL5 deficiency disorder at this time. Mutations have been found in children diagnosed with Infantile Spasms, West Syndrome, Lennox-Gastaut, Rett Syndrome, cerebral palsy, autism, and intractable epilepsy of unknown origin.

Through scientific research and collecting information through the CDKL5 International Database and at our Centers of Excellence, we are working hard to find all of the pieces of this puzzle. It is important to note that scientists and doctors do not know the full spectrum of CDKL5 disorders at this time. There are likely many people affected by CDKL5 who have mild symptoms and no seizures. With continued research and awareness of CDKL5, we hope to build a more comprehensive understanding of the spectrum of this disorder as we continue the search for a desperately needed cure. Click here to read the rest of the story.

WHAT ARE THE EHLERS-DANLOS SYNDROMES?

Posted on May 9, 2022 by specialneedsresourcetrainingblog

Published by: The Ehlers-Danlos Society

The Ehlers-Danlos syndromes (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genetic causes. The underlying concern is the abnormal structure or function of collagen and certain allied connective tissue proteins.

They are generally characterized by joint hypermobility (joints that move further than normal range), joint instability (subluxation (partial separation of the articulating surfaces of a joint)) and dislocations (full separation of the surfaces of a joint), scoliosis, and other joint deformities, skin hyperextensibility (skin that can be stretched further than normal) and abnormal scarring, and other structural weakness such as hernias and organ prolapse through the pelvic floor. In the rarer types of EDS, there is also weakness of specific tissues that can lead, for example, to major gum and dental disease, eye disease, cardiac valve and aortic root disorders, and life-threatening abdominal organ, uterine, or blood vessel rupture.

The Ehlers-Danlos syndromes are currently classified into thirteen subtypes. In all but the hypermobile subtype (hEDS) genetics variants have been identified as the cause for the disorder and are part of the diagnostic criteria. Since the publication of the 2017 criteria for EDS a couple of other genes have been identified describing additional new subtypes. In particular, these include AEBP1-related EDS, and a COL1A1/A2 gene variant causing an overlap between EDS and Osteogenesis Imperfecta.

Each EDS subtype has a set of clinical criteria that help guide diagnosis; a patient’s physical signs and symptoms can be matched up to the major and minor criteria to identify the subtype that is the most complete fit. That said, there can be substantial overlap between the EDS subtypes.

Sometimes a “provisional clinical diagnosis” of an EDS subtype is made. This can occur when a person meets a minimal clinical requirement but has no access to molecular confirmation or whose genetic testing shows one or more gene variants of uncertain significance. These individuals should be followed clinically, and alternative diagnoses and expanded molecular testing, skin histology (microscope examination of a skin biopsy), and testing of possibly affected family members should be considered.

Please remember that an individual’s experience with EDS is their own and may not necessarily be the same as another person’s experience. Diagnostic criteria are meant. Click here to read the rest of the story

Autism Acceptance Month

Posted on May 5, 2022 by specialneedsresourcetrainingblog

Date: April 1- April 30, 2022

What is a Autism Spectrum Disorder?

Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder that impacts social, speech, behavioral and motor skills. It is a spectrum disorder meaning it varies from person to person. No two people have the same symptoms. It is estimated that 1% of the population is diagnosed with autism.

Prevalence

About 1 in 40 children has been identified with autism spectrum disorder (ASD).

1 in 42 boys are diagnosed with autism

1 in 189 girls are diagnosed with autism

100 individuals are diagnosed everyday

ASD is reported to occur in all racial, ethnic and socioeconomic groups.

ASD is 4 times more common among boys than girls.

Studies in Asia, Europe, and North American have idendified individuals with ASD with an average prevalence of between 1% and 2%.

About 1 in 6 children diagnosed with autism also have a developmental disability.

Parents who have a child with ASD have a 2%-18% chance of having a second child diagnosed with autism

Almost half (44%) of children diagnosed with ASD has average to above average intellectual ability.

ASD commonly co-occurs with other developmental, psychiatric, neurological, chromosomal and genetic diagnoses.

Stimming

It is also prevalent among people on the autism spectrum.
In fact in many cases, it is part of the diagnosis due to the repetition of stimming.
Stimming is often used as a means to self-regulate, self-calm and for self-expression.
The movements are repetitive and are used to self-stimulate the 7 senses.
It is often described as a repetitive motor behavior that can disrupt academic and social and other activities.
One of the theories behind stimming is that beta-endorphrins are released in the brain casuing an euphoric feeling which is generally a response to pain.
Stimming behavior. based for self-soothing and to help a child or an adult regain emotional balance.
Sensory Overload. Too much sensory information can lead to stress, anxiety and eventually a meltdown.

Wandering Statistics

Nearly half of children with autism engage in wandering behavior
Increased risks are associated with autism severity
More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
Half of families report they have never received advice or guidance about elopement from a professional
Accidental drowning accounts for 71% of lethal outcomes, followed by traffic injuries at 18%
Other dangers include dehydration; heat stroke; hypothermia; falls; physical restraint; encounters with strangers
Accidental drowning accounted for 91% total U.S. deaths reported in children with autism due to wandering.

Resources

Download Factsheet

Autism and Visual Impairment

Epilepsy and Autism

Self-Regulation and Autism

Trisomy Awareness Month

Posted on March 9, 2022 by specialneedsresourcetrainingblog

Date: March 1- March 31, 2022

March is Trisomy Awareness Month.

Prevalence:

There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%
Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 700 babies in the United States is born with Down syndrome – about 6,000 each year
Down syndrome occurs in people of all races and economic levels
The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age
People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives
A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all
Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways
All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses

The incidence of Down syndrome is between I in 1000 to 1 in 1,100 live birth worldwide.

Each year, approximately 3,000 to 5,000 children are born with Down syndrome.
60-80% of children with Down syndrome having hearing issues
40-45% of children with Down syndrome have congenital heart disease

Life Expectancy

The life expectancy increased slowly from 1900 to 1960 (by 89%) but rapidly grew from 1960 to 2007 (456%)

Life Expectancy by Race

Whites with Down syndrome in the United States had a median death at the age of 50 in 1997 compared to 25 years for African Americans and 11 for people of other races

Resources

10 Important Facts On Trisomy 18

Down Syndrome Timeline

Mosaic Down Syndrome

October is Down Syndrome Awareness Month

Posted on October 8, 2018 by specialneedsresourcetrainingblog

October is Down Syndrome Awareness Month. Down syndrome is defined as a genetic disorder caused by an extra copy of chromosome 21. I have included articles that I have posted over the years to help educate others. Please feel free to share on other social media sites.