10 Important Facts On Trisomy 18

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Today is National Trisomy Awareness Day. Below are 10 important facts on Trisomy 18.

  • It is also known as Edwards Syndrome
  • It is a condition caused by an error in cell division
  • An extra chromosome in 18 develops
  • Occurs in 1 out of every 2500 pregnancies in the United States
  • It is 1 in 6000 live births
  • Only 50% of babies who are carried to term will be born alive
  • Children are often born with heart defects
  • Features include a small head, small jaw, clenched fists and severe intellectual disabilities
  • It is named after John Hilton Edwards, who first described the syndrome in 1960
  • It affects different organ systems

 

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15 Resources on Cerebral Palsy and Adulthood

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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

25 Developmental Disability Links and Resources You Should Know About

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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. Mobility-ability 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

The following are links to articles on various types of developmental disabilities including resources with facts and statistics, organizations, and sign and symptoms.

22q11.2 Deletion Syndrome

27 things to know about Fragile X Syndrome

ADHD- facts and statistics

Angelman Syndrome

Angelman syndrome resources

Cri Du Chat Resources

Developmental disability acronyms you should know 

Developmental disability awareness ribbons

Down syndrome-facts and statistics

Down syndrome timeline

Duchenne Muscular Dystrophy

Early Intervention- Resources and Information

Edward Syndrome Resources

Global developmental delays

Intellectual Disability Resources

Over 30 online resources on Rett syndrome

Pervasive DD-NOS

Prader Willi Syndrome Resources

Resources for teaching students with Down syndrome

Ring Chromosome 22 Resources

Teaching self-regulation and autism spectrum disorder

Things to know about Angelman Syndrome

Turner Syndrome Characteristics

What is Prader Willi Syndrome?

William-Beuren Syndrome Resources

Intellectual Disabilities And Epilepsy

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According to the Epilepsy Foundation, epilepsy is the fourth most common neurological disorder and affects people of all ages. In fact, 1 in 26 people have seizures and while people who are diagnosed with epilepsy may have no other problems, this is not the case for children and adults with an intellectual and developmental disability where the rates are much higher.

It is estimated that 30% of children with epilepsy also have another type of disability. Some studies show that children with an intellectual disability and cerebral palsy, had a 35% chance of developing epilepsy, children with an intellectual disability alone had an 8% chance and children with a brain injury occurring after birth stood a 75% chance of developing epilepsy. Statistically, the risky of a child with a developmental disability experiencing an unprovoked seizure by age 5 is 4 times likely than the general population. It is estimated 1.8% of U.S. adults have epilepsy compared to 22% among people with intellectual disabilities.

People with intellectual disabilities tend to also have worse prognosis with adults having a higher rate of death including Sudden Unexplained Death In Epilepsy (SUDEP).

Epilepsy

Epilepsy is a chronic disorder with recurrent unprovoked seizures. According tot he National Institute of Neurological Disorders and Stroke (NINDS), epilepsys are a spectrum of brain disorders ranging from severe, life-threatening to ones that are more benign. The International League Against Epilepsy created a new definition of epilepsy. A person is considered to have epilepsy if they meet any of the following conditions:

  1. At least two provoked (or reflex) seizures occurring greater than 24 hours apart.
  2. One Unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years.
  3. Diagnosis of an epilepsy syndrome

A seizure is defined as an event and epilepsy is the disease involving recurrent unprovoked seizures.

Intellectual Disability

According to DSM-5, an intellectual disability is a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual social, and practical domains including deficits in intellectual functions such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experiences.  The severity levels range from mild to profound.

Although there is a high relationship between epilepsy and an intellectual disability, little research has been conducted on safe prescribing practices of an antiepileptic drugs for people with intellectual disabilities. What is known about epilepsy and an intellectual disability is that more severe disabilities are typically caused by damage to the brain

Why is it important to discuss?

Given the large number of people with an intellectual disability and epilepsy, treatment may be more complicated due to multiple impairments including people with a diagnosis of autism, intellectual disability and epilepsy. More research needs to occur which will help to reduce morbidity rates and help to develop accurate guidelines.

Cerebral Palsy and Co-occuring Disorders

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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

New Study Links Hyperfocus and ADHD

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Published By: ADDitude Magazine
Written By: Neil Petersen

A newly published study has pried the lid off the mysterious phenomenon of “hyperfocus,” tying it inextricably to symptoms of attention deficit disorder (ADHD or ADD) in adults.

Though not included in the official DSM-5 diagnostic criteria for ADHD, hyperfocus is a condition familiar to many individuals with ADHD who report becoming intensely focused on activities they find rewarding or interesting.

Anecdotally, we have known that, when a person with ADHD experiences hyperfocus, his or her attention becomes laser-like. They lose track of time, and distractions fade away. Switching to other tasks becomes difficult. But from a scientific standpoint, we’ve known very little about hyperfocus, most notably whether it is truly more prevalent among people with ADHD. To read the rest of the story, click here

ISP Terms To Know

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You are probably familiar with IEP’s if your child or family member attend a public school here in the United States. For some people with a developmental disability, the next step may be attending a day habilitation program where adults with developmental disabilities receive Medicaid Waiver Services and has what is called an Individualized Service Plan (ISP).  If you are new the ISP process, the following terms that you will hear often before, during and after meetings.

Assessments. Serves to develop a body of information about an individual’s desires and goals his/her capabilities in areas in need of learning and skill development and the experiences or supports that will promote achievement of those goals.

Background/History. Provides an overview of the life experiences of the person and family.

Goals/Service. includes person-centered supports to enhance opportunities for individuals to make choices that increase their quality of life. An example would be a goal of increasing money or budgeting skills.

Interest and Activities. Describes personal preferences, gifts and interests, as well as conditions to avoid.

ISP Plan. A living document that provides details about what is important to an individual with developmental disabilities. It reflects a person-centered planning process.

Natural Supports. Personal associations and relationships developed in the community that enhance the quality and security of the life for people including family and friends.

Provider Program. The name of the voluntary agency delivering direct care to individuals with developmental disabilities. Providers may offer a variety of services and supports.

Habilitation Service. Services that help you keep, learn or improve skills and functioning for daily living skills

Individual Service Environment. Provides self-directed, individualized assistance and support to individuals living on their own, either alone or with roommates in their own home or apartment.

ISP Meeting

ISP Revision. Revisions and changes to the ISP can occur when an individual experiences a change in need throughout the year and must be reflected in the ISP. It is not necessary to wait annually to make the revisions. The date of the revisions should be reflected in the ISP.

HCBS Waiver Services.  A Home and Community-Based Service (HCBS) Waiver is a Medicaid program designed to meet the needs of children and adults who prefer to get long-term care services in their home or community, rather than in an institutional setting.

Medicaid. is a jointly funded, Federal-State health insurance program for low-income and people in need including children and adults with disabilities. It is a government insurance for people whose income and resources are insufficient to pay for healthcare. A Medicaid number is needed for an ISP and is used to bill services.

Person-Centered Planning (PCP). An ongoing problem-solving process used to help people with disabilities plan for their future. It allows individuals to be engaged in the decision making process about their options, preferences and values.

Protective Oversight. is a documented and approved plan used for the sole purpose of enhancing individual safety. It list the key activities that affect health and wellness of an individual.

Safeguards. a measure taken to protect the individual from harm by providing information on how it will be addressed. An example is fire evacuation. If a person is not able to evacuate independently from a fire emergency, protections are put in place to ensure his or her safety.

Service Provider. The name of the voluntary agency delivering direct care to individuals with developmental disabilities. The provider may offer a variety of services and supports.

Value Outcome. Statements that represent what is important to the person. It may include what the individual needs, wants to change or would like to maintain in his/her life. Outcomes are developed through the ISP process.

 

Increased resources, support needed for individuals with autism as they age: report

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Published By: Global News
Written By: Michelle McQuigge

A think tank formed to understand the challenges faced by autistic seniors says there are few resources in place to address their specific needs.

A new report from the Aging and Autism Think Tank says the vast majority of research and programming geared toward autism focuses on children, leaving adults almost entirely out of the conversation. The study – compiled by academics, clinicians and autistic adults from five different countries and released by Autism Canada – says autistic people lose access to key resources once they age out of childhood and contends the problem intensifies the older they get. Click here to read the rest of the story.

 

Teaching Students with Angelman Syndrome

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Angelman Syndrome is a genetic disorder that affects the nervous system, characteristics that include developmental delays, intellectual disability, and speech impairments. Angelman syndrome generally go unnoticed until the age of 1 year. Children typically have a happy demeanor and have a fascination with water

Symptoms
  • developmental delay
  • intellectual disability
  • epilepsy
  • microcephaly
  • short attention span
  • happy demeanor
  • hyperactivity
  • hand-flapping
Associated Behaviors
  • tongue thrusting
  • feeding problems during infancy
  • sensitivity to heat
  • frequent drooling
  • attraction to water
Prevalence

Angelman Syndrome  is  a rare disorder and affects 1 in 12,000 to 20,000 a year. Equally to less than 200,000 case a year. Affects all ethnicities and sexes equally.

Angelman Syndrome-Bridges for Kids

Angelman Syndrome Educational Material

Angelman Syndrome– Ontario Teachers Federation

Angelman Syndrome– National Association of Special Educators

Angelman Syndrome in the Classroom- Puzzle Place

Communication strategies for children with Angelman Syndrome– Cleveland Clinic

Education Resources- Angelman Resources

Some Angelman Tips– Teaching Learners with Multiple Special Needs

Working with a child who has Angelman Syndrome– St. Cloud State University

Writing instruction for students with Angelman Syndrome– PracticalAAC

Identifying Street Signs Worksheet

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This is an introduction to identifying street signs for children and young adults learning how to cross the street safely. The worksheet includes signs needed in teaching street crossing safety.

Learning Objectives:

  • Will match the traffic sign correctly
  • Will identify the traffic sign correctly
  • Will name the traffic sign correctly

Material Needed:

Traffic sign worksheet
laminated (optional)
laminator paper(optional)
Scissors

Instructions:

  1. Once you have printed the worksheet, cut the individual traffic signs and laminate.
  2. Explain each traffic sign and have the individual repeat.
  3. Once the signs are separated, mix them up and have the individual point to the correct ones.
  4. Have the individual state the traffic signs correctly and match

Traffic Signs Worksheet_ID Signs