Tag Archives: epilepsy

Epilepsy in Adults with Intellectual Disabilities: Prevalence, Associations and Service Implications

Posted on by

Introduction

The prevalence of epilepsy in people with an intellectual disability is higher than in the general population. The outlook for individuals with both epilepsy and intellectual disability depends on the presence of any associated conditions. There have been few epidemiological studies of the prevalence of epilepsy and associated problems within a representative adult intellectual disability population to inform the development of a policy.

Findings

  • The prevalence of epilepsy was at least 26 times higher than in the general adult population
  • There was no particular concentration of epilepsy in any gender, ethnic or residential subgroups.
  • Morbidities specifically associated with epilepsy included low level of understanding, incontinence, difficulty walking, poor speech, lack of empathy.
  • These problems make epilepsy care more difficult for people with an intellectual disability and suggest the need for a multidisciplinary skills

 

Reference

McGrother, C.W.; Bhaumik, S.; Thorp, C.F.; Hauck, A.; Brandford, D.; Watson, J.A.(2005). Epilepsy in Adults with Intellectual Disabilities: Prevalence, Associations and Service Implications. Seizure. 15, 376-386.

Developmental Disability Awareness Ribbons

Posted on by

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

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

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

Williams Syndrome

June

Dravet Syndrome Day

July

Fragile X Syndrome

National Craniofacial Awareness and Prevention Month

September

Duchenne Muscular Dystrophy Day

Hydrocephalus

Sickle Cell Anemia

Spinal Cord Injuries

October

ADD/ADHD

Down Syndrome

Rett Syndrome

Sensory Processing Disorder

November

DiGeorge Syndrome

Epilepsy

 

Updated 1/2/2021

Thanksgiving and Mealtime Precautions

Posted on by

mealtime_thanksgiving_logo

Thanksgiving is the day set aside in the United States and Canada as a day of pausing to reflect all that we are thankful for by connecting with friends and family over good food. It is also the day of taking special precautions when serving people with developmental disabilities.

Aspiration is a huge risk during the holiday season. Factors that place people at risk for aspiration includes the following:

  • Being fed by someone else
  • Poor chewing or swallowing skills
  • Weak or absent coughing/gagging reflexes which is common in people with cerebral palsy or muscular dystrophy
  • Eating to quickly
  • Inappropriate fluid consistency
  • Inappropriate food texture

For children and adults with autism, Thanksgiving may be a challenge for a variety of reasons:

  • Sensory and emotional overload with large groups
  • Picky eaters
  • Difficulty with various textures of food

To help you mange Thanksgiving with ease, click on the articles below:

5 simple steps to hosting an autism-friendly Thanksgiving

8 tips for managing Thanksgiving with children with autism

10 genius ways to help your autistic picky eater to eat this Thanksgiving

Autism and Picky Eating

Autism and Thanksgiving: How to cope with the feasting and hubbub

Feeding kids with sensory processing disorders

Preparing for Thanksgiving on the autism spectrum

Swallowing problems? What to do about Thanksgiving

Thanksgiving dinner ideas for speech therapy activities

Tips for Navigating Thanksgiving on the Spectrum

 

Updated 08/26/2020

Cerebral Palsy and Co-occuring Disorders

Posted on by

Cerebral Palsy is defined as a group of disorders of movement and posture causing limitations due to abnormal development in the brain. According to the Centers for Disease Control and Prevention (CDC), many children and adults with cerebral palsy also had at least one co-occurring condition and in some cases more than one. for example, it is not unusual for and individual to have a diagnoses of cerebral palsy with a co-occurring condition of epilepsy and an intellectual disability and associative  issues with an eating disorder.

Understanding both co-occurring conditions and associative disorders is essential in order to develop an effective teaching strategy.

associative issues include aspiration, dysphagia, digestive issues, seizures, intellectual disability, sleep disorder, and speech impairments.

The following links and articles includes information that contain research studies, articles and practical information.

 

Cerebral Palsy and Epilepsy– Cerebral Palsy Guidance

Cerebral Palsy and Seizures– Cerebral Palsy Guidance

Cerebral Palsy and Speech Therapy– Cerebral Palsy Group

Children with spastic cerebral palsy experience lower leg fatigue when walking study shows- Cerebral Palsy News Today

Common health problems associated with cerebral palsy- My Child Without Limits

Communication and swallowing issues for adults with cerebral palsy-EPI

Difficulties in swallowing and coughing in spastic cerebral palsy focus of study– Cerebral Palsy News Today

Digestive health tips for kids with cerebral palsy-Sarah Halstead

Gastrointestinal and nutritional issues in cerebral palsy-practicalgastro.ocom

How does cerebral palsy affect people?-Cerebral Palsy Alliance

Prevalence of cerebral palsy and intellectual disability among children- NCBI

Sleep disorders in kids with cerebral palsy often remain untreated study suggest– Cerebral Palsy News today

Sleep issues among children with cerebral palsy-CP-NET

Seizures in children with cerebral palsy and white matter injuries-Pediatrics

Understanding more about cerebral palsy and seizures– Murdoch Children’s Research Institute

Resources

Centers for Disease Control and Prevention

National Institute of Neurological Disorders and Stroke

Early Death in Those with Autism Spectrum Disorder

Posted on by

Published by: Psychology Today
Written by: Michael A. Ellis

Two recent studies will undoubtedly shock individuals and families affected by autism spectrum disorder (ASD). These studies show a much earlier age of death in those with ASD as compared with the general population.

One study, published in the American Journal of Public Health in April 2017, finds the life expectancy in the United States of those with ASD to be 36 years old as compared to 72 years old for the general population.  They note that those with ASD are 40 times more likely to die from various injuries.  About 28 percent of those with ASD die of an injury.  Most of these are suffocation, asphyxiation, and drowning.  The risk of drowning peaks at about 5 to 7 years old.  As 50 percent of those with ASD wander, water safety and swim lessons are a must.  GPS trackers are also available for purchase should a child wander or get lost.  This makes finding the child or adult much easier and faster. Click here to read the rest of the story