Monday, April 20, 2015

Autism Moms Have Stress Similar To Combat Soldiers

As a mom who was advised to that I was suffering from PTSD after Nick's diagnosis and my divorce ...all I can say is stress is real for all of us, and I'm sad our families have one more box to check. :(   



Autism Moms Have Stress Similar To Combat Soldiers

Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities.
Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress.
They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.
“This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.”
Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental activity, researchers say.
In a companion study, the researchers followed up with the same group of mothers daily to interview them about how they used their time, their level of fatigue, what leisure activities they participated in and whether or not stressful events occurred. This information was then compared with data from a national sample of mothers whose children do not have disabilities.
Mothers of those with autism reported spending at least two hours more each day caregiving than mothers of children without disabilities. On any given day these moms were also twice as likely to be tired and three times as likely to have experienced a stressful event.
What’s more, these moms were interrupted at work on one out of every four days compared to less than one in 10 days for other moms.
Despite all of this, mothers of an individual with autism were just as likely to have positive experiences each day, volunteer or support their peers as those whose children have no developmental disability, researchers found.
“On a day-to-day basis, the mothers in our study experience more stressful events and have less time for themselves compared to the average American mother,” says Leann Smith, a developmental psychologist at the University of Wisconsin-Madison who worked on the studies. “We need to find more ways to be supportive of these families.”
In particular, the researchers say that parents need better respite options and flexibility from their employers. Further, they say, programs to help manage behavior problems can go a long way toward improving the situation for mothers and their kids alike.

Suprise Party!!

 It's a great morning when the AM news has something positive to say! Today KABC had a story about an 11 year old boy with autism. Seems none of his "friends" showed up for his birthday party. So the neighbor-hood got together and threw a super bash for him!!!!!!!!! 

I love it when people get "reported" for doing the right much better than car chases, wouldn't you agree.  

Thanks KABC News! 

Tuesday, April 14, 2015

Study: Marijuana extract may help children with epilepsy

Study: Marijuana extract may help children with epilepsy

From age one, Hank Kovach suffered from severe epilepsy that could not be controlled with medicine. His mother, Megan, says he could have more than 25 seizures a day.
"One time, I thought he was playing in the other room," she told CBS News. "He was not playing in the other room, he was convulsing, turning blue. And that's when I thought I lost him."
Twice a day, Hank Kovach receives a marijuana liquid extract called Epidiolex as part of a small trial designed to see if medical marijuana could help with his severe epilepsy.
Last summer, she eagerly enrolled her son in a small trial designed to see if medical marijuana could help.
Twice a day, Hank receives a marijuana liquid extract called Epidiolex. The medicine does not contain THC, the ingredient that can cause euphoria, anxiety and paranoia. Kovach said the change in her son has been dramatic.
"We instantly saw results," she said. "He was smiling again. We saw a decrease in seizures. At this point, he was finally able to gain cognitive skills with therapy."
One-hundred thirty-seven children and young adults, average age 11, were given the drug. After 12 weeks, parents reported the number of seizures declined 45 to 50 percent.
"They had better sleep, better attention, better cognitive concentration, better behavior. Some of the kids clearly became more verbal, better coordination," said Dr. Linda Laux of Lurie Children's Hospital in Chicago, one of the researchers.
"I had one child who started walking while they were using the medication."
Now age 7, Hank still cannot speak, but is able to attend school, and has not had a seizure in months.
"My hope is for him to be seizure free, be happy," Kovach said. "My goal is to hear his voice, to hear him talk. We just want him to be happy."

Monday, April 13, 2015

Technology and Speech, a Perfect Marriage!

This is amazing and so exciting to see. I love supporting great folks, doing great things. Maria Johnson a great speech path - who we loved working with - left Los Angeles to work with the University of Texas. She recently sent me this video of the Virtual Reality work they are doing for people on the Spectrum. So exciteing, had to share :)

Spread the Word! The research and results that we are showing are astounding!

Sunday, April 12, 2015

Watch...Aging Out Crisis NBC Tonight!

Kate Snow Shares Powerful Stories Of Young Adults Living With Autism And Their Families' Desperate Search for Specialized Support
Dateline's "On the Brink" Airs Sunday, April 12 at 7pm/6c

NEW YORK - April 9, 2015 - On Sunday, April 12 at 7pm/6c, NBC's Dateline will air "On the Brink," a powerful new report, three years in the making, that puts a spotlight on autism's 'aging out' crisis. Over the next ten years, an estimated half a million young people with autism will turn 21 and 'age out' -- losing their eligibility for help through the education system. The stability and structure they have had nearly their whole lives will end, and there's no equivalent support system to take over. "On the Brink" takes an unprecedented look at the lives of young adults with autism and the extraordinary measures parents take to provide their children with specialized services and a better future.

Over a three-year period, Dateline chronicles the raw and emotional journeys of two New York-based young adults with autism and their families, as they transition from graduation to adulthood and make a leap towards an uncertain future. NBC News National Correspondent Kate Snow interviews two mothers who devote their lives to caring for their sons and helping them find a voice. Snow shares their heartbreaking stories and the tremendous challenges of navigating a broken system of programs that will allow their sons to progress in life. "On the Brink" documents both families' ongoing fight to help their children and revolutionize the way autism is perceived in the U.S.

"We spent countless hours with these two families for over three years and it truly was an eye-opening experience," said Snow. "It's one thing to know that services end for people when they turn 21, and it's another to see it play out. We are grateful that both families allowed us into their private lives, so we are able to share their compelling stories and shine a much-needed spotlight on this important issue."

Snow also speaks about concerns surrounding the 'aging out' process with Sharon Lewis, Senior Advisor on Disability Policy to the U.S. Secretary of Health and Human Services, and Linda Walder, Executive Director of the Daniel Jordan Fiddle Foundation, a non-profit organization devoted to studying the issues facing adults with autism.

Early excerpts from Snow's interviews will air on TODAY and NBC Nightly News, Friday, April 10. Dateline's "On the Brink" airs Sunday, April 12 at 7pm/6c on NBC.

Monday, March 30, 2015

Autism and ill health; People with autism and learning disabilities can die up to 20 years prematurely

Autism and ill health: how to spot the subtle signs that something is wrong


People with autism and learning disabilities can die up to 20 years prematurely. So how can we help carers and health workers diagnose illness in non-verbal patients?

Photograph: Lisa Kopper

There is a saying that when you’ve met one person with autism, you’ve met one person with autism – it is notoriously hard to generalise about a condition that takes in such a wide spectrum, from the highly intelligent but socially awkward adult to the profoundly learning-disabled child who will need lifelong support. But there are certain health issues that crop up so often that all those with autism, their advocates and medical professionals need to be aware of them.
Many are hypersensitive and react excessively to even the lightest touch and smallest discomfort; others, such as Timothy, are hyposensitive and symptoms of quite major problems go unnoticed. You have to know him well, spot small behavioural changes and explore the reasons for them. Recently, the very conscientious manager of Timothy’s home got in touch because he was agitated and slapping his face. We thought he might be mimicking someone at his day centre, but asked her to take him to his GP and dentist. Sure enough, he had an infected root canal that needed treatment. A course of antibiotics, and he is happy again.
These days, Timothy lives with observant staff who know him well and pick up the subtle signs if something is not right. But, sadly, not everyone on the spectrum has people watching out for them, especially when they are adults and don’t live with their families. Poorly trained and poorly paid careworkers don’t stick around long enough to get to know the people they are supporting intimately, and neglect happens all too often.

There are hardly any long-term studies of people with autism as they age, but US research has estimated that life expectancy is far shorter for them than for their unaffected siblings or cousins – especially if they have learning difficulties as well. On average, people with autism and learning disabilities die between 10 and 20 years prematurely.
Despite campaigns by Mencap and increased awareness, Dr Pauline Heslop, the lead author of a groundbreaking UK study into premature deaths, said: “The unacceptable situation remains that for every one person in the general population who dies from a cause of death amenable to good healthcare, three people with learning disabilities will do so.” Among Timothy’s peers, we know of several who have died too young when cancers have progressed unnoticed, or when their unchecked consumption of water, food or non-food items has led to catastrophic ill health. Meanwhile, epilepsy affects 20-40% of people with autism and is one of the major causes of premature death, along with respiratory, cardiac and dysphagia disorders. While articulate autistic adults can face troubling health problems too, these issues can be a particular cause of concern for people who can’t speak for themselves.
All too often, medical professionals are inexperienced around autistic non-verbal adults and don’t know that their behaviour may be a form of communication. They sometimes dismiss their actions as a quirky autism trait. Jim Blair, a consultant learning disability nurse, campaigns for better treatment of adults and children with learning disabilities in hospitals. Currently, fewer than half of hospitals in the UK have a learning disability nurse on staff. In the past, Blair has worked with doctors who see a non-verbal patient banging their head against a wall and write it off as “habitual autistic behaviour”, rather than investigating whether the patient is in pain and is trying to blot it out by head-banging.
Heslop would like to see learning disability nurse specialists working across GP practices, advising and training medical staff and carers. She believes that good-quality health checks and prevention work – not just box-ticking exercises where forms are filled in then forgotten in a drawer – could lead to far fewer people with autism needing hospital care and dying prematurely.
In recent years, some excellent resources have been created, such as the Books Beyond Words series that explain health problems in pictures. Visual pain scales(smiley to sad faces) and the videos and photo-stories on the Easyhealth site(designed by the learning disability charity Generate) can also help non-verbal communication.
Campaigners such as the National Autistic Society encourage the use of health or hospital “passports”. These are personalised documents that accompany someone with autism who can’t speak for themselves. They give vital personal history, medical information, sensory idiosyncrasies and advice on how the patient might behave if stressed by their surroundings or illness. Many health workers find the passports very useful when faced with a new patient with baffling behaviour and no speech, but there are also reports of the documents being ignored by busy professionals who think they do not have time to read them. There is no statutory obligation to take account of a health passport.

There is a very convincing argument that the main reason autism rates have risen to one in 100 in recent years is because of growing awareness of the diversity of autism, leading to many more diagnoses. But diagnosis is just the beginning – in order for people such as Timothy to have a long, happy life, we need greater awareness not just of autism, but how it can affect overall health.

Sunday, March 29, 2015

Autism Mom FURIOUS over Steve Harvey Comments about Special Needs Kids

This mom is very passionate about special needs kids being joke material for commedians.  Some people are saying "Parents of children with autism too sensitive" What do you think?

Wednesday, March 4, 2015

17 Tricks to Falling Asleep Faster - A must read for Mom's

One day I'm going to write an Autism Alphabet, and for sure the "S" will stand for Sleep Deprived! I have been sleep deprived since Nick was born and there is no end in sight. I have to sleep with one ear open, and that's when I get to sleep because Nick is a terrible sleeper. That said, I just had to click on a link that read: "17 Tricks to Falling Asleep Faster". What I didn't expect was this first paragraph that had me bent over with ironic laughter! 

Amazing, now I have an excuse for everything! LOL and TTH (the truth hurts). 

Research shows that being continually sleep-deprived makes you dumb, irritable, distracted, unhappy, and fat — among other terrible things.
But knowing that sleep is necessary, and the science behind why, just makes the feeling of lying awake at 3 a.m. worse.
To help the insomniacs among us get some rest, we gathered the best practices from sleep science. 
The experts call it "sleep hygiene." Here's a crash course. Read more:

Monday, March 2, 2015

#The Dress Gives Insight to Autism

The first time I heard the "White/Gold" and "Blue/Black" dress debate, I thought "Dah! The dress is Gold and White, what's the big deal. Some folks are just color blind!".   Then I showed it to Evyn and Nick. Evyn saw what I saw, but Nicholas saw Blue and Black!  Of course he did :)  LOL. Then I found this article about sensory intregration and I could not agree more.

BTW: I also moved the laptop around so I could see the dress from different angles.  And there was one angle where the dress was in perfect focus and I saw Blue and Black!  WTHeck, perception is so complicated.