Cerebral Palsy Organizations You Should Know About

Cerebral Palsy describes a group of permanent disorders of the development of movement and posture. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication and behavior, epilepsy, and by secondary musculoskeletal problems.

According to the Centers for Disease Control and Prevention (CDC), cerebral palsy is the most common motor disability in childhood caused by damage to the developing brain that affects a person’s ability to control his or her muscles. CDC estimates that about 1 in 323 children are diagnosed with cerebral palsy annual.

The following organizations provide resources on their websites including fact sheets, resources and information:

Cerebral Palsy Foundation

Funds cerebral palsy research in the United States, (CPF) promotes the delivery of current research, best practices and technology to people with cerebral palsy and their support system. The mission includes transforming lives through research, innovation and collaboration.

Children’s Hemiplegia and Stroke Association

Helps children who have survived an early brain injury that results in hemiplegia (weakness on one side of the body).

Make LemonAide Foundation

The Make Lemon Aide Foundation is a non-profit organization designed to improve the lives of people with cerebral palsy by raising awareness, funding research and training therapist.

Reaching For The Stars

Founded in 2005, RFTS is the largest pediatric cerebral palsy non-profit foundation in the world led by parents with a focus on the prevention, treatment and cure of cerebral palsy

United Cerebral Palsy

UCP educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. UCP provides services and support to more than 176,000 children and adults through its 68 affiliates around the country.

CP Daily Living

An educational resource website and Facebook page designed to give families and caregivers a central place for practical information and resources.

Cerebral Palsy Alliance

A non-profit organization based in Australia. Provides services to help children and adults living with neurological and physical disabilities.

National Institute of Neurological Disorders and Stroke

NIDS mission is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disorder. The website provides patient and caregiver education on cerebral palsy including an informational page.

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100 Things To Know About Autism Spectrum Disorder in 2018

Guest Post: Action Behavior Centers

  1. Autism Spectrum Disorder (ASD) represents a group of developmental disorders: autistic disorder, Asperger’s syndrome, pervasive developmental disorder not otherwise specified (PDD-NOS), and childhood disintegrative disorder.
  2. According to the Centers for Disease Control and Prevention (CDC), 1 in 68 individuals are affected by ASD.
  3. Autism Spectrum Disorders can be diagnosed as early as 18 months to 2 years of age.
  4. Although reliable diagnoses can be given at 18 months to 2 years, the average child isn’t diagnosed with autism until 4 years of age.
  5. Scientists are discovering more innovative ways to diagnose autism. In 2017, a team of researchers were able to use brain scans and artificial intelligence to predict which 6-month old infants would go on to be diagnosed with ASD. Impressively, they performed at a 96 percent accuracy rate.
  6. No case of autism is exactly the same as another. Each person on the Spectrum is a unique individual.
  7. People of all races, ethnicities, and socioeconomic groups are affected by Autism Spectrum Disorder.
  8. Individuals on the Autism Spectrum range from having very mild symptoms to very severe developmental delays.
  9. Autism is about 4.5 more common in males – data shows that 1 in 42 boys have autism compared to 1 in 189 girls.
  10. New Jersey has the highest rate of autism in the U.S., with 1 in 28 boys being affected.
  11. In autism terminology, milder cases of the disorder are said to be in “high functioning” individuals while more severe cases are said to be in “low functioning” individuals.
  12. Autistic disorder typically describes those who are on the “low functioning” end of the Spectrum.
  13. Individuals with autistic disorder often struggle with severe deficits in speech, communication, social skills, motor functioning, and adaptive skills.
  14. Adaptive skills are the practical, day-to-day skills needed to live independently: bathing, getting dressed, brushing teeth, feeding oneself, and more.
  15. Asperger’s syndrome typically describes those who are on the “high functioning” end of the Spectrum.
  16. Children and adults with Asperger’s syndrome commonly struggle with social interactions or restricted interests, but don’t usually have difficulties with language or cognitive development.
  17. Sometimes referred to as ‘atypical autism,’ PDD-NOS is often thought of as being in between Asperger’s syndrome and autistic disorder. It’s common for those with PDD-NOS to struggle with communication, social behavior, and repetitive movements.
  18. Childhood disintegrative disorder, also known as disintegrative psychosis, is the rarest of the Spectrum disorders. It’s characterized by severe development deficits, often in children who were developing normally but then quickly regressed between ages two and four.
  19. These disorders were all placed under the umbrella term of Autism Spectrum Disorder in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders).
  20. Restrictive and repetitive behaviors are a common sign of ASD. These might include hand flapping, rocking back and forth, and fixations on certain objects.
  21. It’s common for individuals on the Spectrum to have difficulties with language or be completely nonverbal.
  22. Children with Autism Spectrum Disorder might show typical language development and then quickly lose their ability to speak in words or phrases. This is called regression.
  23. Many children who are nonverbal at the age of four go on to overcome their severe language delays, according to a large study of 535 nonverbal children with autism.
  24. Children with autism often struggle with transitions. A slight change in routine can lead to meltdowns or temper tantrums.
  25. Echolalia describes a behavior involving repetition of words or phrases. It’s a common sign of Autism Spectrum Disorder.
  26. Children on the Autism Spectrum often avoid eye contact.
  27. Some children with autism may engage in aggressive or self-injurious behaviors, like head banging against walls or floors when upset.
  28. Sensory sensitivities to lights, sounds, and textures are commonly seen among those with autism.
  29. Many people with autism are extremely gifted in certain areas, like mathematics, music, or art.
  30. Micah Miner, a young gymnast with autism, is a prime example of this. By the time he was nine years old, Micah competed in the gymnastics National Championship for the third time.
  31. Epilepsy is common among individuals with Autism Spectrum Disorder, seen in up to a third of the autism population.
  32. April is Autism Awareness Month.
  33. Back in 2007, the United Nations named April 2nd as international Autism Awareness Day.
  34. To help raise autism awareness, Autism Speaks launched the Light It Up Blue campaign.
  35. To show support for autism, landmarks like the White House, the Empire State Building, the Great Pyramid of Giza and more will light up blue on April 2nd.
  36. There’s no single cause of autism.
  37. Some of the high-risk factors for autism include genes and genetic mutations, chromosomal conditions, family factors, environmental influences, prenatal influences, and birth complications.
  38. There are treatments that can help ease the symptoms of ASD, but there is no cure for autism.
  39. Applied Behavior Analysis therapy is the leading treatment option for young children on the Spectrum.
  40. Applied Behavior Analysis (ABA) involves figuring out the motivation behind certain behaviors, and then applying this to reduce undesirable behaviors and increase positive ones.
  41. Decades worth of scientific research shows that ABA therapy is effective at helping children with autism make significant strides to overcome their developmental delays.
  42. One of the main techniques used in ABA is DTT (discrete trial training). Basically, DTT breaks down tasks into small components. Children build up skills by tackling each smaller component one-by-one.
  43. Another main technique used in ABA is NET (natural environment training). Children might work on many of the same goals as in DTT, but in a more natural play environment.
  44. Generalization is a common term used in ABA to describe a child’s ability to naturally implement behaviors and skillsets in a variety of settings.
  45. ABA therapy is endorsed by the U.S. Surgeon General, the American Academy of Pediatrics, the National Institute of Mental Health, and the Autism Society of America.
  46. The earlier ABA therapy is started, the better the outcome. Children who start receiving ABA therapy at 2 years old make more significant changes than those who start ABA at later ages, according to research.
  47. Ole Ivar Lovaas is known as the pioneer of Applied Behavior Analysis.
  48. ABA therapy used to be seen as controversial due to aversive therapy techniques. However, nowadays, there are no aversive procedures used in ABA.
  49. ABA therapy focuses largely on positive reinforcements. ABA therapists will reinforce desirable behaviors with a child’s favorite toys, snacks, and social praise.
  50. ABA therapy is an all-encompassing approach to overcoming the deficits associated with autism. Target areas of ABA therapy include speech, nonverbal communication, social skills, play skills, adaptive skills, toilet training, food therapy, and much more.
  51. Board Certified Behavior Analysts (BCBAs) are Master’s level health practitioners. They create the child-specific treatment plans implemented in ABA therapy centers.
  52. ABA therapists provide one-on-one therapy for children in ABA autism facilities.
  53. Registered Behavior Technicians (RBTs) are ABA therapists who have gone on to complete 40 hours of training and pass the RBT exam.
  54. Other autism therapies include speech therapy, occupational therapy, physical therapy, art therapy, and music therapy.
  55. There is currently no scientifically proven link between autism and vaccines.
  56. Individuals with autism are particularly vulnerable to being bullied. Studies have found that over 60 percent of children on the Spectrum have experienced bullying.
  57. Data shows that the most severe bullying tends to occur among children in 5th to 8th
  58. There are a number of tips recommended by autism experts to help a child on the Spectrum who is being bullied, including identifying emotions and creating bully-proofing plans. See them here.
  59. Unemployment rates are a big issue in the autism community. A report out of the A.J. Drexel Autism Institute found that a third of young adults with autism didn’t have a job or educational plans.
  60. Integrate Autism Employment Advisors is a program that helps adults on the Spectrum lock down jobs through job coaching boot camps and networking opportunities. The organization also reaches out to employers to encourage more hiring of autistic individuals.
  61. Rett’s Syndrome is often confused with Autism Spectrum Disorder. Rett’s Syndrome, a rare neurological disorder that mainly affects girls, is characterized by a rapid loss of speech, coordination, and use of the hands.
  62. Research has shown that parental interactions with babies can ease the signs of autism as the baby progresses to toddler age.
  63. Temple Grandin, one of the most prominent voices in the autism community, didn’t speak until she was three and a half years old.
  64. Temple Grandin went on to become an author and speaker on autism and animal behavior, as well as a professor of Animal Science at Colorado State University. Many people view her as showing the world the true potential of those on the Spectrum.
  65. Temple Grandin has inspired many with her well-known quote, “Different, Not Less.”
  66. Some other well-known people considered to be on the Spectrum include Susan Boyle, John Elder Robinson, Daryl Hannah, and Andy Warhol.
  67. Technology can be a huge help for individuals with autism who struggle with communication. There are a number of iPad apps designed to help nonverbal children communicate their wants and needs.
  68. There are also daily scheduling apps for iPads to help ease the anxiety associated with transitions.
  69. Some common autism assessments for an autism diagnosis include M-CHAT (Modified Checklist for Autism in Toddlers), CARS (Childhood Autism Rating Scale), ASQ (Ages and Stages Questionnaire), and ADOS-2 (Autism Diagnostic Observation Schedule – 2nd edition).
  70. The ADOS-2 is largely seen as the gold standard of diagnostic assessments for autism.
  71. Autism Spectrum Disorder can be diagnosed by developmental pediatricians, pediatricians, neurologists, and psychologists.
  72. Autism is becoming more included in pop culture, with shows like Atypical and The Good Doctor making their ways to Netflix and ABC.
  73. In April of 2017, Sesame Street debuted Julia: a new four-year-old character with autism. The goal was to familiarize children with the differences they might notice in their classmates who have autism – and to know that different is okay.
  74. Some people believe that autism is the result of bad parenting or child neglect. This is not the case.
  75. It’s common for children with ASD to only like eating two or three foods. Therapists can work through a slow process of introducing new textures and foods to build up to a more nutritious diet.
  76. The autism community has a strong online presence. Many parents, therapists, and individuals on the Spectrum run blogs to educate and connect with others. Check out some of the most outstanding autism blogs here.
  77. Weighted blankets can be an anxiety-reducer for some kiddos on the Spectrum. Weighted blankets provide a gentle pressure that eases the sensory issues associated with ASD.
  78. Sensory swings provide a number of benefits. They can encourage motor planning, balance, and core stability.
  79. The largest-ever study on twins and autism found that if one identical twin has autism, there is a 76 percent chance that the other identical twin will also have autism
  80. The same twins study found that same-sex fraternal twins have a 34 percent chance of both having an autism diagnosis, while opposite-sex fraternal twins share an 18 percent chance of Autism Spectrum Disorder.
  81. Autism was first described by Dr. Leo Kanner in 1943.
  82. Reporting on 11 children, Dr. Kanner’s initial observations on autism described the children as having “a powerful desire for aloneness” and “an obsessive insistence on persistent sameness.”
  83. Before Dr. Kanner’s work, autism was often confused with schizophrenia.
  84. Autism is the fastest-growing developmental disorder. The prevalence of ASD in children increased by 119.4 percent from 2000 to 2010.
  85. In 2014, researchers identified a whopping 60 genes with more than a 90 percent chance of increasing the risk for autism in a child. Previously, just 11 genes had been linked with Autism Spectrum Disorder.
  86. Just last year (2017), an analysis published in Nature Neuroscience identified 18 new genes linked with autism.
  87. In September 2018, the National Institutes of Health awarded nine research grants to the Autism Centers of Excellence (ACE) program. The grants totaled nearly $100 million.
  88. The nine research grants will delve into improving autism treatments, identifying the early signs of autism by studying social interaction, how autism differs between girls and boys, and more.
  89. The Autism Science Foundation (ASF) is a nonprofit organization with a mission to further scientific research on Autism Spectrum Disorder.
  90. ASF provides funding and other resources/assistance to organizations and scientists conducting autism research.
  91. Many top colleges and universities offer degree programs in Applied Behavior Analysis. Some of the best ABA programs can be seen in this list.
  92. There are a number of books on autism that have made the New York Times Best-Seller List, including Look Me in the Eyes by John Elder Robison and The Reason I Jump by Naoki Higashida.
  93. Jordan Keller, a 12-year-old on the Spectrum, published a book called Jumbled Pieces: Autism. His mission is to help others understand what it’s like to grow up with autism.
  94. Insurance oftentimes covers the majority of the cost for ABA therapy, speech therapy, and occupational therapy.
  95. Unfortunately, in some states, Medicaid provides no coverage for ABA therapy. This leaves many families in need of autism services with little to no options.
  96. Congress passed the ABLE (Achieving a Better Life Experience) act in 2014.
  97. Under the ABLE act, individuals with disabilities are given the opportunity to open tax-free savings accounts without risking eligibility for Social Security and other government programs.
  98. Many children sit on waitlists to see a developmental pediatrician for 9 months or more. This delays the start of therapy and can significantly hurt a child’s ability to overcome developmental deficits.
  99. Waitlists are also an issue at many ABA centers.
  100. People on the autism spectrum are extraordinary, gifted, and loving human beings!

Why Are Public Toilets A Challenge For Children and Young People With Autism?

Sign, Bathroom, Restroom, Symbol, Icon
Written By: Natasha Bolger
Published By: Bladder and Bowel UK

Problems with imagination may lead to a lack of ability to know what is going on or what will come next, resulting in inflexibility, difficulty changing routines, fears and anxieties, as well as an inability to transfer a skill learned in one place to another. Therefore, the child may be able to use the toilet at home or at school, but does not understand that they can or should do this in different toilets.

These problems may on their own make public toilets a difficult place for children and young people with autism to be. However, if there are sensory differences, particularly hypersensitivities, which is an increased awareness of different sensory inputs, these may make public toilets a particularly difficult or frightening place to be. It needs to be remembered that sensory problems can make things that most of us do not even notice intrusive or even painful for some people with autism. Read the rest of the story here.

Special Needs Article Resources

The following are helpful articles on a variety of topics from children with disabilities to adults with physical disabilities.


Submitted by: Jennifer McGregor

Explaining special needs to your child: 15 great children’s books– This article provides information on books to help promote understanding and tolerance of children with disabilities. Books include topics on ADHD, autism, visual and physical disabilities and invisible disabilities such as anxieties.

How to Remodel for Accessibility– Includes steps to remodeling your home for wheelchair accessibility

Developing Your Blind Child’s Sleep Schedule– Although this article focuses on the sleep pattern of children who are visually impaired, it is also helpful for children with autism who display an irregular sleeping pattern.

How to Exercise if You Have Limited Mobility– An article that focuses on fitness tips for people with physical disabilities including the three different types of exercises.

10 Things You Should Know About Brain Injuries

Brain injury is called the ‘silent’ epidemic with 5.3 million Americans live with brain injury and occurs every 23 seconds. A brain injury is defined as a disruption in the normal function of the brain that can be caused by a bump, blow, or jolt to the head. The following are 10 facts that you should know about brain injuries.

No two brain injuries are exactly the same

The effects of a brain injury depends on the cause, location and severity

Depending on the severity of the brain injury, effects may include temporary loss of consciousness or coma, respiratory or damaged motor functions.

A concussion can be caused by direct blows to the head, gunshot wound, violent shaking of the head or force from a whiplash.

A contusion is a bruise (bleeding) on the brain caused by a force to the head

A traumatic brain injury (TBI) is a complex injury with a broad spectrum of symptoms and disabilities

TBI is a contributing factor to a third of all injury-related deaths in the United States

Almost half-a million emergency room visits for TBI are made annually by children aged 0 to 14

In every age group, TBI rates are higher for males than for females

TBI is a major cause of death and disability in the United States

References

http://www.cdc.com

http://www.biausa.org

http://www.traumaticbraininjury.com

 

How To Decode Teacher Comments For Signs

Parent teacher conference

Written by: Amanda Morin

Published by: Understood

Have you ever gone to a parent-teacher conference and felt like the teacher’s comments meant something more than what she actually said? Or that she was vague about a concern she has? Sometimes a teacher isn’t as direct as she could be—or would like to be.

There are many possible reasons for that. She might be bound by official (or unofficial) school policies that limit what she can say to parents. She might not know much about how special education works and may worry she’s going to give incorrect advice. Or she might be uncomfortable saying something negative about your child. Read the rest of the story here.

Exercise and The Special Needs Professional

Working in the special needs profession often leaves little room for self-care and developing a healthy lifestyle including exercising, which why it is vital that you take the initiative and create an exercise plan that will work well for you.

Why Exercise?

Exercise is essential for your health and well-being for many reasons.  For one, it helps to prevent disease. By moving one’s body daily, we reduce the risk of cancer, diabetes, and heart disease. A second reason is that it helps us control our weight. As we get older, we tend to slow down which causes us to burn fewer calories. Working in a profession which can take an emotional and mental toll, causes one to just want to go home and relax. However, exercising less and burning fewer calories can lead to obesity.

Benefits of Exercising

There are many benefits to exercising

  1. Improves memory and thinking skills. Research shows that working out on a regular basis boost the size of the hippocampus, the part of the brain responsible for memory and learning. This is done through aerobic exercises.
  2. Relieves stress. Although not fully understood, regular exercise reduces anxiety and depression disorders. It is known however that  aerobic exercise is associated with the lower sympathetic nervous system which is responsible for accelerating the heart rate and raising the blood pressure.
  3. Boost energy. While little is known on the relationship between exercise and energy, studies show that people who exercise on a regular basis, are more likely to feel more energy than those who do not.

Four Types of Exercises

  • Endurance. includes aerobic activities which focus on your circulatory system and helps to build your endurance. exercises include walking, jumping, and running.
  • Strength. Also known as resistance training, serves the purpose of strengthening and toning your muscles. Exercises typically include weight lifting.
  • Balance. Helps to improve balance and strengthen your core. Exercises include tai chi and yoga.
  • Flexibility. Used for stretching your muscles and improving your range of motion. Stretching exercises are usually part of a warming up and cooling down routine.

Here are following at exercises that include the four types of exercises:

  • Running
  • Walking
  • Spinning
  • Yoga
  • Tai Chi
  • Bike
  • Dancing
  • Swimming
  • Lifting weights
  • Stretching
  • Cycling
  • Strength Training
  • Hiking
  • Jump rope
  • Bowling
  • Horseback Riding
  • Bowling
  • Handball
  • Ice Skating
  • Jumping Jacks
  • Jai Alai
  • Kick Boxing
  • Martial Arts
  • Pilates
  • Roller-skating
  • Scuba Diving
  • Skateboarding
  • Skydiving
  • Snorkeling
  • Tennis
  • Yardwork
  • Zumba

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