The grief in knowing you’ll one day outlive your primary caregiver as a person with a physical disability

Published by: CBC News
Written by: Sam Juric

“They’re like a charley horse,” says Rebecca Wilchynski, explaining the involuntary spasms that take hold of her legs — breathtaking and sudden.

“It’s not just in one muscle, it can be in all the muscles or a few,” she said. “Cerebral palsy, every case is individualized, and there are definitely more severe cases and some that are less severe. I have the less severe.”

Cerebral palsy is a neurological condition affecting body movement and muscle co-ordination, resulting from an injury to the brain. It does not get worse over time, though the exact symptoms can change over a person’s lifetime.

As a result of an injury to the brain, cerebral palsy interferes with messages from the brain to the body, and from the body to the brain.

“It’s very painful. I have spastic … and athetoid [cerebral palsy], which means they move without me wanting them to, so it can make life a little bit interesting.”  Click here to read the rest of the story

We are alone in this together

Published by: Cerebral Palsy News
Written by: Briana Beaver

“This pandemic is really working for you,” my mom said, half-jokingly. She nor I never could have imagined that over the course of only weeks, society would rearrange itself into a more Briana-friendly place. The “awkward” social necessities characteristic of my interactions with others have now become the norm.

For years, I have received critical looks upon entering a public space wearing a mask. When I would ask people not to stand close to me, to refrain from touching me because of my immunocompromised state, people would look at me strangely. Trying to explain to others that I have been isolated in my home because of environmental health triggers has been met with skepticism. Suddenly, social distancing and quarantining have become the rule, not the exception.

The ability of society to reorganize with warp speed is something to behold. The countless years during which I attempted to legitimize my health needs and requisite social arrangements have felt fruitless. I’ve lost friends and watched sprouting relationships fade into the background because others could not understand my life. The cultural repercussions of the pandemic are providing us with a unique opportunity not only to legitimize the various needs of those with chronic health conditions and disabilities, but also to increase awareness about the flexibility of humanity. Click here to read the rest of the story.

Cerebral Palsy Training PowerPoint

This blog article is an introduction to cerebral palsy. In the past, very few educational programs offered courses on specific information pertaining to disabilities. I am hopeful this is beginning to change.  Ions when I started working in the field, I felt that there was simply not enough information so I started to do my own research by reading books, journal articles and talking to both professionals and parents.

Here, I have included a short PowerPoint presentation on a brief introduction of Cerebral Palsy. The objectives include, the definition, prevalence and causes, types and the causes. This format can be used in various ways including a teaching course since most of us are currently learning online, or as a self-study course. Below,  you will find a quiz along with the quiz answers.

If you would like  to print out a copy of the PowerPoint, Download here: Cerebral Palsy PowerPoint

Download quiz test here: cerebral palsy QUIZ

Download quiz test answers here: cerebral palsy QUIZ answer

Free Printable Cerebral Palsy Fact Sheet

Want to learn more about Cerebral Palsy?  The following is a fact sheet that provides information on the facts of cerebral palsy including the definition and the prevalence, signs, types, and causes.

The fact sheet also includes information on teaching strategies and organizational resources.

Download fact sheet here

What You Should Know About GERD and Developmental Disabilities

Feeding problems are common in people with an  intellectual/developmental disability. For example, it is reported that 37% of individuals with diplegia or hemiplegia and 86% of individuals with quadriplegia experience GERD. It is very common in people with cerebral palsy and can show up as anemia, failure to thrive and reoccurring infections.

It is usually missed by people who have been feeding and serving food to individuals with disability due to its subtle signs.

What is Gastroesophageal Reflux? (GERD)

GERD occurs when the muscle connecting  to the esophagus is weak and opens under pressure, allowing the stomach contents to flow back into the esophagus. It is the acid from the stomach to the esophagus. this will irritate the lining of the esophagus and causes heartburn. Without treatment, GERD can cause complications.

What causes GERD?

GERD is usually caused by inflammation from the exposure of the esophagus to the stomach acid. The following can cause GERD:

  • diet such as fatty foods, coffee, peppermint and chocolate
  • decreased muscle tone
  • overweight
  • backup in blockage of the intestinal tract.

There are many reasons for the high incidence of GERD in individuals with intellectual disability including immobility and positioning, abnormal postures, medication use and excessive drooling.

What is 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).

For people with limited communication, the following are possible signs of gastroesophageal reflux:

If you suspect GERD, make arrangements for the person to be evaluated by a physician.

Aspiration Precautions

Children and adults with developmental disabilities often face challenges with eating, drinking and swallowing disorders than the general population. It is estimated that adults with intellectual disabilities require support from caregivers during mealtime. It is common among people who have a diagnosis of cerebral palsy, intellectual disability, physical  disability and muscular dystrophy.

Dysphasia is a medical term used to describe any person having difficulty swallowing foods and liquids taking  more energy and time to move food from the mouth to the stomach. Signs of dysphasia may include:

  • Drooling
  • Food or liquid remaining in the oral cavity after swallowing
  • Complaints of pain when swallowing
  • Coughing during or right after eating or drinking
  • Extra time needed to chew or swallow
  • Reflux of food

Dysphasia can lead to aspiration. Aspiration is defined when food, fluid, or other foreign material gets into the trachea or lungs instead of going down the esophagus and into the stomach. when this occurs, the person is able to cough to get the food or fluid out of their lungs, in some cases especially with children and adults with disabilities may not be able to cough. This is known as Silent Aspiration.

A complication of aspiration is Pneumonia which is defined as inhaling food, saliva, and liquids into the lungs

According to the Office of People with Developmental Disabilities Health and safety Alert, factors that place people at risk for aspiration include:

  • Being fed by others
  • Weak or absent coughing, and/or gag reflexes, commonly seen in people with cerebral palsy.
  • food stuffing and rapid eating/drinking
  • Poor chewing or swallowing pills
  • GERD- the return of partially digested food or stomach contents to the esophagus
  • Providing liquids or food consistencies the person is not able to tolerate such as eating whole foods.
  • Seizures that may occur during eating and/or drinking.

How to recognize signs and symptoms of Aspiration:

  • Choking or coughing while eating or just after eating
  • Drooling while eating or just after eating
  • Eyes start to water
  • Shortness of breath
  • Fever 30 minutes after eating
Intervene immediate if there are signs of aspiration:
  • Stop feeding immediately
  • Keep the person in an upright position
  • Call 911 if the person has difficulty or stops breathing and no pulse
  • Start rescue breathing

Minimize aspiration from occurring by serving the appropriate food texture and liquid consistency. If you are not sure of the right consistency, check with your health care provider. The following are pictures of food consistencies.

Courtesy of OPWDD

Courtesy of OPWDD

Whole. Food is served as it is normally prepared; no changes are needed in
preparation or consistency

Courtesy of OPWDD

1 ” Pieces cut to size. Food is served as prepared and cut into 1-inch pieces
(about the width of a fork).

Courtesy of OPWDD

1/4 Pieces Cut to Size. Food is cut with a knife or a pizza cutter or placed in a food
processor and cut into ¼ -inch pieces (about the width of a #2 pencil)

Courtesy of OPWDD

Ground. Food must be prepared using a food processor or comparable equipment
until MOIST, COHESIVE AND NO LARGER THAN A GRAIN OF RICE, or relish
like pieces, similar to pickle relish. Ground food must always be moist. Ground meat
is moistened with a liquid either before or after being prepared in the food processor
and is ALWAYS served with a moistener such as broth, low fat sauce, gravy or
appropriate condiment. Hard, dry ground particles are easy to inhale and must be
avoided.

 

Courtesy of OPWDD

Pureed. Food must be prepared using a food processor or comparable equipment.
All foods are moistened and processed until smooth, achieving an applesauce-like or
pudding consistency. A spoon should NOT stand up in the food, but the consistency
should not be runny. Each food item is to be pureed separately, unless foods are
prepared in a mixture such as a soup, stew, casserole, or salad.

Aspiration Precautions

  • Make sure the person eats slowly and takes small bites of food
  •  Ensure the person takes small sips of liquids
  • Focus on the person’s swallowing
  • Make sure the person remains upright for a minimum of thirty minutes after eating

Developmental Disability Facts and Statistics

Developmental disability is a diverse group of chronic conditions that are due to mental or physical impairments before the age of 22. A developmental disability can occur before, during or after birth. Common well-known developmental disabilities include autism, Down syndrome, cerebral palsy and Fragile X syndrome. Here are some facts and statistics on developmental disabilities.

Click here to download PDF Format

  • Developmental Disability is a severe, long-term disability that affect cognitive ability, physical functioning or both.
  • 1 in 6 or about 15% of children aged 3 through 17 have one or more developmental disabilities.
  • Between 2014 and 2016 the prevalence of developmental disability among kids ages 3 to 17 increased from 5.76 percent to 6.99 percent.
  • Prevalence of autism increased 289.5%
  • Prevalence of ADHD increased 33.0 %
  • Males have a higher prevalence of ADHD, autism, learning disabilities, stuttering and other developmental disabilities.
  • Children from families with incomes below the federal poverty level had a higher prevalence of developmental disabilities.
  • 10% of Americans have a family member with an intellectual disability.
  • Intellectual disabilities are 25 times more common than blindness.
  • Every year 125,000 children are born with an intellectual disability
  • Approximately 85% of the intellectual disability is in the mild category.
  • About 10% of the intellectual disability is considered moderate
  • About 3-4% of the intellectual disability population is severe.
  • Only 1-2% is classified as profound.

 

Resources

National Institute of Health

25 Resources on 504 Accommodations and Modifications

Section 504 is a federal law designed to protect the rights of individuals with disabilities in programs and activities that receive Federal financial assistance from the U.S. Department of Education (Edefines a physical or mental impairment as any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genito-urinary; hemic and lymphatic; skin; and endocrine; or any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities.  

5 important classroom accommodations for children with autism

12 accommodations and modifications for dyslexic children in public school

20 modifications for students with autism

21 school accommodations available for children with special needs

504 accommodation checklist

504 plan: ADHD accommodations to manage ADHD symptoms at school

504 plan templates

A 504 plan for those with dyslexia

A parents guide to section 504

504 Education Plans

504 Plan: What is it?

Accommodations and supports for school-age students with autism

Accommodations for ADHD students K-12 in the classroom

Accommodations for students with learning disabilities

Classroom accommodations for ADHD

Classroom accommodations for dyslexic students

Classroom accommodations for students with epilepsy

Developing 504 Classroom accommodation plans

Dyslexia accommodations: How to know what your child needs

Dyslexia and accommodations- ADA guidelines for school and work

Examples of accommodations and modifications

Modification for students with Down syndrome

Section 504 and Discrimination

Section 504: sample accommodations and modifications

What are school accommodations and modifications for students with Asperger’s?

15 Resources on Cerebral Palsy and Adulthood

Cerebral palsy is a condition caused by damage to the specific areas of the brain. Cerebral palsy refers to the brain and palsy to muscle weakness. Cerebral palsy is a syndrome of motor impairment with posture and movement disorder. It is a non-progressive disorder, however, as a person begins to age, muscle and skeletal problems begin to worsen resulting in more pain, discomfort and limited mobility. Due to muscle flexibility, strength and endurance issues, there is a greater risk of falls and injuries. The following articles includes information on understanding how aging and adulthood affect people with cerebral palsy.

5 common challenges for adults with cerebral palsy- Made For Movement Blog

Adults and cerebral palsy– Cerebral Palsy Organization

Adults with Cerebral Palsy- Cerebral Palsy Foundation

Aging with Cerebral Palsy and Chronic Pain– The Mighty

Care of adults with cerebral palsy-American Academy for Cerebral Palsy and Developmental Medicine

Cerebral Palsy and aging– Developmental Medicine and Child Neurology

Cerebral palsy and transitioning to adulthood-Cerebral Palsy Alliance

Cerebral Palsy effects through lifespan-Physiopedia

Cerebral Palsy in Adulthood– Everyday Health

Cerebral Palsy patients provide rare insight into aging– Cerebral Palsy News Today

Cerebral palsy symptoms in Adulthood- Healthfully

Living as an adult with cerebral palsy– Healthline

Living with cerebral palsy as an adult– WebMD

Progression and Correction of Deformities in Adult with Cerebral Palsy-ACNR

The good, the bad, and the ugly facts about adult cerebral palsy-Karen Pape

Cerebral Palsy and Co-occuring Disorders

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