5 Great TED Talks on Autism

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Steve Silberman: The Forgotten History of Autism

Science journalist describes the history of autism through the work of Hans Asperger and explores neurodiversity and the link between autism and genius.

Chris Varney: How My Unstoppable Mother Proved the Experts Wrong

An advocate for children rights, Chris Varney, diagnosed with autism as a child explains how his mother and a community of support, instilled the importance of believing he can do anything.

Rosie King: How Autism Freed Me To Be Myself

In her TED Talk, Rosie shares the importance of being able to step outside the box, and questions why brilliant people strive to be “normal.”

Benjamin Tarasewicz: Breaking Barriers of Autism: The Power of Kindness and Friendship

A high-schooler and musician diagnosed with autism, Benjamin provides inspirational stories and tips for reaching out to people with differences.

Temple Gradin: The World Needs All Kinds of Minds

An expert on animal behavior, Temple Grandin has designed humane handling systems for half the cattle-processing facilities in the U.S., discusses the different types of thinking across the spectrum.

Book Review: The Out-Of-Sync Child Grows Up

 

outof sync

The Out-of-Sync Child Grows Up: Coping with Sensory Processing Disorder in the
Adolescent and Young Adult Years
By: Carol Kranowitz
Forward by: Lucy Jane Miller
Published by: Peguin Random House
Pages: 320
Format: Paperback, Kindle

This book is the long-awaited follow-up to the best seller, The Out-Of-Sync Child. Presenting information and advice for tweens, teens, and young adults living with Sensory Processing Disorder, and their parents. The purpose of the book is to offer coping strategies for SPD, help readers living with SPD share their stories and to increase public awareness about SPD.

The book is broken into 4 parts. Ms. Kranowitz begins the first chapter with background history o how she started gathering information on SPD. Chapter 2 describes typical and atypical development. Part 2 describes coping with daily activities and part 3 explains coping with relationships while part 4 provides insight into living an “In-Sync” life.

The book also provides personal stories from people with SPD. Their stories move the book from one of practical tips to truly understanding the experiences of a child with SPD. The format of the book will help people with SPD realize they are not alone and help both parents and professionals understand the needs of a teen and young adult with SPD.

 

 

 

10 Speech Therapy Blogs You Should Be Reading

Speech therapy is a key component in the life of a child with a disability. When it comes to speech therapy, there are so many blogs that provide an abundance of resources for other speech therapist, teachers and parents. Finding the right ones however can be a challenge.

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The following blogs provide tons of information, resources and tips on speech language topics. Here are 10 speech therapy blogs worth checking out (in no particular order).

Beautiful Speech Life– Creates and develops therapy materials for fellow SLP’s and teachers. This website provides freebies, language materials and quick therapy tips.

Nicole Allison Speech Peeps– This website offers speech language resources on a variety of topics and an evidence-based intervention series.

PediaStaff– A resourceful blog providing informative news information and article blogs from speech language websites.

Simply Speech– A site with freebies and great blog ideas and activities

Speech 2 U- Provides resources, freebies and therapy topics on communication, social language, social language, organization, plus more!

Speechy Musing– Provides speech therapy resources on a variety of topics. Age range includes, birth to 3, elementary school and middle school on the subject of articulation, language and AAC; The site also includes a blog for fellow speech therapist.

Sublime Speech– Provides therapy to children with severe and profound disabilities. Website includes information on apps, articulation, language, materials and social skills

Teach Speech 365. Includes freebies, giveaways and therapy topics.

The Dabbling Speechie– A website for speech and language pathologist and parents offering a variety of resources on articulation, language and social skills.

The Speech Room News– Specializing in pediatric speech and language therapy, Jenna’s site provides resources for speech language pathologists and educators. The website includes free resources, and treatment topics on articulation, social language, preschool and more.

 

Abilities Expo

Abilities Expo will be coming to Boston, MA, from September 16th thru the 18th. The mission of the expo is to bring necessary products and services together under one roof for the community of people with disabilities, caregivers and healthcare professionals.

abilities expologo

Workshops include, Living with Chronic Pain, Wheelchair Accessible Travel, Emergency Preparedness for People with Disabilities plus more. Events include, Acupressure for Stress Release, Adaptive Gaming Pavilion and an Assistive Technology Showcase.

Registration is free and will be held at the Boston Convention and Exhibition Center, Hall C.

Dates and Times

September, 16th- Friday- 11am -5pm
September 17th- Saturday- 11am-5pm
September 18th- Sunday- 11am-4pm

For detailed information, Click Here

What You Need To Know About Dravet Syndrome

Epilepsy is the 4th most common neurological disorder in the United States. With children, around 400,000 have epilepsy and most are able to control their seizures and lead normal lives. Dravet Syndrome is a rare form, of epilepsy found in children. Symptoms include, developmental delays, sleeping conditions, and chronic infections. Here are 20 facts you shoud know about Davet Syndrome.

20facts.dravet

  • Charlotte Dravet first described severe myoclonic epilepsy of infancy in France, 1978.
  • The name was later changed in 1989.
  • It is also called Severe Myoclonic Epilepsy of Infancy (SMEI)
  • It is a rare genetic disorder affecting 1 in every 20,000-40,000 children
  • It appears during the first year of life.
  • Seizures are often fever-related.
  • It is rare to develop beyond the age of 5.
  • Children often experience poor development of language and motor skills
  • Is caused by defects in a gene in 79% of cases.
  • Affects 2-5% of children in North America
  • It is induced by prolonged exposure to warm weather
  • It is associated with sleep disorder including insomnia
  • Seizures are frequently resistant to treatment
  • There is a higher risk of Sudden Unexplained Death in Epilepsy (SUDEP)
  • The onset of signs and symptoms is around 6 months around the time of the first vaccination.
  • Children typically outgrow seizures prior to adolescence.
  • Children diagnosed with Dravet Syndrome have a 85% chance of survival.
  • Development is typically normal.
  • Episodes may be frequent and prolonged
  • Certain seizure medications are likely to worsen the seizures such as Dilantin, Cerebyx and Tegretol.

Resources

Dravet Syndrome Foundation
P.O. Box 16536
West Haven, CT
Tel. 203-392-1950

Dravet Syndrome UK
P.O. Box 756
Chesterfield
5439EB
Tel. 07874 866937

Epilepsy Foundation- Provides online resources on information about epilepsy and seizures, locating assistance, advocacy and public awareness.

ICE Epilepsy Alliance– Provides resources on refractory patients (anti-epileptic drug therapy which is ineffective). Site includes information on advocacy, childhood epilepsy, and Dravet syndrome.

NINDS Dravet Syndrome Information Page– Medical information page on Dravet syndrome, diagnosis, treatment, research and organizations.

WebMD– Medical website providing information on diagnosis, signs and symptoms, and treatment.

25 Great Resources on Special Needs Clothing

Children and adults with disabilities with sensory issues, autism, ADHD, down syndrome and cerebral palsy often find challenges in finding clothing that meets the need of feeling good and appropriate.

25clothing.resources

Challenges may also include difficulties in handling buttons and closures. Here are 25 resources that focus on shoes, outerwear, and adaptive clothing.

Adaptive Clothing

Adaptations By Adrian- Adaptive clothing including side zippers, wide band elastic waist for custom-made capes, wheelchair, pants, shorts adult protectors and cape protecting scarf.

CAPR-Style– Located in the U.K, adaptive clothing for adults and children including feeding tube covers.

Designed By Dignity– Adaptive clothing fashion clothes for men and women.

Down Design Dream– Adapting Clothing for children and adults with special needs

Easy Access Clothing– Adaptive clothing for adults and children.

Professional Fit Clothing– Adaptive clothing for adults and children including adults bibs, clothing protectors and nightware.

Rackety’s- Based in the U.K, products include adaptive clothing for children and adults such as vests, outdoor clothing, and nightwear.

Something Sew Special– Handmade adaptive clothing for children with special needs including bibs, ponchos, bodysuits and bandanas.

Specially For You Inc.– Custom clothing for children with physical disabilities. Products include night wear, dresses, tops, one piece outfits and hooded poncho’s.

Tender Ivy– Onesie garment designed for protecting vulnerable areas.

Wonsie– Based in Australia, products include special needs onesie bodysuits for older children and adults.

Sensory Clothing

Children and adults with sensory processing issues may find it difficult wearing certain types of clothing. The following stores sell items that are for sensitive skin, medically fragile and pressure points.

Cool Vest– products includes children’s cooling vest.

Independent You– Adaptive outerwear, sportswear and sleepwear.

Kozie Clothes– Adaptive medical and sensory clothing for medically fragile and special needs babies and children.

No Netz– Anti-chafe swimwear for boys and men.

SmartKnit Kids– Seamless products for children with sensory issues. Products include, socks, undies, tees and bralettes.

World’s Softest– Socks for sensitive skin

Shoes for AFO’s

The following are stores that sell shoes that fit over orthotics.

Ablegaitor- Orthopedic shoes for children. Can be used without AFO’s.

Hatchbacks– Children’s orthopedic shoes for use with orthotics.

Healthy Feet Store– An online orthopedic shoe and footcare store including AFO’s accommodations.

Keeping Pace– Children’s orthopedic footwear designed for AFO’s.

Shoby Shoes– Custom-made orthopedic shoes and support boots for special needs children

Soft Star Shoes– Will customize shoes to work wit AFO’s and DAFO’s.

Coats for Wheelchairs

Coats for individuals who use wheelchairs  made need special clothing. The following online stores, specialize in adaptive outerwear for children and adults.

Koolway Sports– Based in Ontario, Canada, Koolway Sports items include blankets, hoods, and capes.

Silvert’s– Adaptive clothing for men and women including footwear and wheelchair clothing.

Weighted Vest

Weighed vest can be used for children and adults with autism, ADHD, Cerebral Palsy, Muscular Dystrophy and a sensory processing disorder.

e-Special Needs– provides a selection of weighted vests and clothing

Fun and Function– Includes items such as explorers vest, fleece hoodies and compression vests.

Autism Moms and Chronic Stress

No huge surprise that mothers of children with autism experience stress similar to combat soldiers. Combat stress is defines as mental, emotional or physical distress, resulting from exposure to combat-related conditions including a heighten awareness of potential threats.

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Researchers followed a group of mothers of children diagnosed with autism and found the moms displayed higher levels of chronic stress. And no wonder, a 2011 study conducted by the Interactive Autism Network found that nearly half of the children with autism attempted to bolt from a safe, supervised place with more than half wandering into dangerous situations. Also, more than a third of the children with autism who wandered/elope are rarely able to communicate their personal information and two out of three parents reported a close call with a possible drowning.
Signs similar to combat soldiers include, re-experiencing events or flashbacks, memory loss, unusual or excessive fear or worry, unexplained sadness, feeling overwhelmed, feeling isolated and withdrawal and avoiding others.
Signs and symptoms may include physical signs including trembling, jumpiness, cold sweats, heart palpitations, unable to sleep, fatigue and a “thousand yard” stare. Emotional signs may include, re-experiencing events of flashbacks, memory loss, unusual excessive fear, unexplained sadness, feeling overwhelmed, and feeling isolated. Chronic stress is often caused by hypervigilance, a feeling of always being on guard and anticipating any types of threat.  This type of stress can lead to chronic stress. Ongoing chronic stress could lead to possible health problems including, heart disease, weakening of the immune system, ulcers, respiratory issues and depression.
This all occurs when our bodies perceive a threat and moves into action. When a stressful event occurs, the body prepares to meet the stress by increasing the heart rate, respiration, and blood pressure. Once the perceived threat is over, our bodies return to a relaxed state. But what happens when you are always in a state of preparing for a stressful event?  The body reacts by staying in this preparedness state thus weakening the heart and the immune system.
While it is almost impossible to allow yourself to relax completely, here are five ways that will help relieve symptoms of chronic stress:
  1. Deep Breathing. Breathing techniques will put you in a relax state which helps to reduce the stress levels. This will help to change the physical and emotional responses to stress including helping to decrease any muscle tension and the heart rate. Deep breathing also increases the oxygen supply to your brain and will help to reduce anxiety and stress.
  2. Meditation. This also helps to reduce worry anxiety and impulsivity. Meditation also helps to improve your mood and lower your heart rate. It helps to start small. Even if you are able to sit still for five minutes, you will begin to see a difference.
  3. Support System. Countless of studies show that having a support group make a huge difference. It helps to talk to someone with a shared experience. Family members mean well, but may not understand.  The truth is that we need layers of support.There are countless of support groups online you can join through social media, community forums, organizations and blogs. Know that you are not alone. Building a support group may also include spiritual mentors, parents from school and mentors.
  4. Self-Compassion. I love this one. the word compassion itself means “sympathy and concern for the suffering of others”. But how much compassion do you give to yourself? Self-compassion helps to lower symptoms of depression and paying close attention to what you say to yourself. Replace the negative self-talk with positive words of encouragement. Other steps you may take include writing a letter to yourself and making a daily gratitude list. Remind yourself that you are doing the best that you can at this moment. Below is  free printable self-compassion checklist.

    self-compassion checklist

self.compassion checklist

What ways have you found useful in combating stress?

 

 

 

 

The Southwest Conference on Disability

The Conference will be held between October 5 and October 7, 2016.

southwest conference

Entitled, “Reducing Disparities  for People with Disabilities Through System Change”, the conference will include sessions on inclusion, peer mentoring and smoking cessation for people with developmental disabilities.

A one day pre-summit workshop for lawyers will be held on Thursday, October 6, 2016 which is led by the Autism Speaks Legal Resource Center.

On October 7th, there will be a joint programming with sessions on autism from both Autism Speaks and the Southwest Conference. The session begins at 8:30am.

Early Bird Registration : September 5th, 2016. The conference will be held at the Albuquerque Convention Center. For more information, Click here 

 

 

Zika Virus and Microcephaly

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Media coverage surrounding the Zika virus outbreak and its link to microcephaly in newborns continue as the number of cases continue to grow including a recent article on the discovery of infected mosquitos found in the state of Florida.

What exactly are the facts?

Zika virus disease is a virus which is primarily transmitted by Aedes mosquitoes that were first identified in Uganda in 1947 in monkeys. The rates of human infections were reported across Africa and Asia from the 1960’s to the 1980’s. It wasn’t until 2015 however when Brazil reported a direct association between the Zika virus and microcephaly. Since then, the number of people infected has grown in alarming rates including the number of children born with microcephaly.

Transmission

Typically, the Zika virus is transmitted through the bite of an infected mosquito. These types of mosquitos are generally found in tropical environments. The virus can also be transmitted through sexual activity and can be detected in body fluids including blood, urine, amniotic fluids, semen, saliva and spinal cord fluids.

Signs and Symptoms

Symptoms may include a slight fever which may appear a few days after a person is bitten by an infected mosquito. Other signs may include conjunctivitis, and muscle and joint pain. The symptoms typically last between 2-7 days. There is currently no cure for the virus.

What is the relationship between the Zika virus and Microcephaly?

The Center for Disease Prevention and Control (CDC) confirmed the Zika virus infection during pregnancy does cause microcephaly and other severe fetal brain defects.

What is Microcephaly?

Microcephaly is defined as a medical condition where the brain does not grow properly resulting in a smaller than normal size head.

microcephaly-comparison

Diagnosis

Often, microcephaly can be diagnosed during pregnancy using an ultrasound test. This is generally done late in the 2nd trimester or early in the third trimester. After a baby is born, a health practitioner will measure the distance around the baby’s head and compare the measurements to the general population standards. Severe microcephaly occurs when the baby’s brain has not developed during pregnancy.

Incidence

Microcephaly is considered rare. In the United States, microcephaly occurs from 2 babies per 10,000 live births to 12 per 10,000 live births. An estimated 25,000 births per year. However, the rates in Brazil have jumped from 0.04 percent to 1.9 percent within the last year.

Causes

Besides the Zika virus, microcephaly may be caused by:

  • German measles
  • Chicken pox
  • Exposure to drugs or alcohol in the womb
  • Chromosomal  abnormalities
  • Decreased oxygen to the fetal brain
  • Severe malnutrition
  • Gene deletion i.e. DiGeorge syndrome

Associated Conditions

Children born with microcephaly may not show any signs or symptoms initially, but may develop the following later:

  • cerebral palsy
  • seizures
  • intellectual disabilities
  • learning disabilities
  • hearing impairments
  • visual impairments

Treatment

There is currently no treatment for microcephaly. Early intervention is vital for the growth and development of the child.

Resources

CDC- Build a Prevention Kit-Provides information on reducing the risk of Zika by creating a prevention kit.

Centers for Disease Control and Prevention – This site provides information on Zika travel notices and countries with the endemic including guidelines for traveler’s visiting family and friends in the affected area.

Live Coverage– complete coverage of the outbreak

U.S. Department of State– Maintains an updated status notice on the virus.

The following medical sites provide additional information on microcephaly including causes, symptoms, test and diagnosis:

Organizations

Cortical Foundation– Dedicated to providing services to educate, advocate, support and improve awareness of cortical malformations

Foundation for Children with Microcephaly– A website created to help and inform parents and families of children who have been diagnosed with microcephaly

Selected News Articles

The following are selected articles on the Zika Virus and Microcephaly:

A mothers battle: Surviving microcephaly in Brazil.

Microcephaly: “It’s not the end of the world.”

Protecting pregnant women in the U.S. from Zika is a top priority, Official says.

Sesame Street’s Elmo and Raya warn kids about Zika

Scientists determine how Zika virus causes brain defects and microcephaly

Zika Revealed: Here’s what a brain-cell killing virus looks like

 

 

July Special Needs Article Links

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Welcome to the July links. These are articles that I tweeted and or received from viewers during the month of July on special needs and developmental disability topics.

4 tips for reducing stress in children with autism (Autism Speaks)

5 reasons I made a film about autism (Autism Speaks)

5 ways autism helped me earn my doctorate degree (Autism Speaks)

5 ways businesses can help those with autism spectrum disorder (Kare + Plus)

10 things ER staffers should know about autism (The Mighty)

Books about children with sensory processing disorder (LaToya Edwards Blog)

How does sensory processing affect communication in kids with autism? (Autism Speaks)

How gardening helped my autistic son to blossom (The Guardian)

Making sense out of sensory integration (The Sensory Spectrum)

Man with Down syndrome fulfills dream of graduating from Clemson (10tv.com)

Researchers at Vanderbilt helping teens with autism learn how to drive (Fox 6 News)

Sensory Processing Disorder and summer (Brain Balance)

Teaching safety skills to children with autism (Out Crazy Adventures in Autismland)

This nonspeaking teenager wrote an incredibly profound letter explaining autism (Sydney Morning Herald)

What a meltdown feels like for an autistic person (Autisticate Dalmayne)

What is autism in plain language (Autism Academic Blog)

What will happen to adult children with autism? (Next Avenue)

When my employer realized I have autism (The Mighty)

Why are we still treating autism like an epidemic? (Wired)