Nick's First Weekend Away From Home...Ever! He's off to Camp :)

Oh my gosh, This is so exciting, such a massive step and I'm actually a bit anxious. Nick is going to camp and will be gone for 3 days! Three days! I know to most folks with a 17 year of it's not big deal, but he has never been away from me for three days in this life. He did stay overnight at a friends when he was in elementary school for one night...but that's it!

This will be the first time since he was born, 17 years ago, that my daughter and I have been together without him!

I'm so excited to spend some along time with her, and so excited that Nick get's sometime without us! This is big!

Great News for People with Epilepsy - Smart Watch App

One of the most frightening days of my life was the morning Nick had a grand mal seizure which came on unexpectedly, and could have caused brain damage and even death. That said, I had to share this after getting it sent to me from another mom. Great stuff. 

Smartwatch app detects epileptic seizures and texts a warning

Kathryn Clark’s epilepsy had been under control for years. Then, in November 2014, she was hit by a tonic-clonic seizure – the kind that spreads to the entire brain and leaves the victim convulsing on the floor.

“I haven’t had too many of those in my life, and that one was out of the blue,” Kathryn says (pictured above). She was worried about looking after her children, then aged 2 and 4, if the seizures were coming back.

Her husband Ryan, an independent game developer, had an idea: program a smartwatch to detect movement characteristic of a seizure and text him a warning.

“I realized it should be possible, and took a week off work to throw this thing together,” Ryan says. Now the pair have created software that does just that, and made it freely available online.

Motion detector

Devices that detect seizures are not new – researchers have tested sweat-sensing wristbands that can detect seizures via electrical currents travelling across the skin – but Ryan and Kathryn’s detection system has an advantage. Ryan chose to work with the $100 Pebble, one of the cheapest smartwatches on the market.

This means the program, called Pebble Seizure Detect, is instantly available to any of the 1.5 million Pebble ownerswho might be living with epilepsy, with no need to buy anything else.

The Pebble has an accelerometer that can detect the wearer’s motion, so Ryan wrote code to spot rhythmic movements in the frequency range seen during tonic-clonic seizures. He figured out what that range was by watching YouTube videos of people having seizures and mimicking their motions while wearing the watch. He then compared the results against scientific literature.

If the watch detects motions that go above a certain threshold, it sends an alarm to the wearer’s phone. The wearer has 15 seconds to turn the alarm off if they are not having a seizure.

Panic button

“There definitely are false positives,” Ryan says. “Brushing your teeth is almost exactly the same frequency and strength as having a seizure, it will definitely pick that up.”

He warns that it can also miss real seizures if the arm wearing the watch gets trapped under the person’s body, for instance. “It’s not foolproof,” says Ryan. “It shouldn’t be relied upon, but makes it more likely that a seizure will be detected.”

If the alarm is not cancelled, the app automatically sends a text to predetermined numbers – in Kathryn’s case, Ryan and her dad. The text includes the wearer’s last known GPS location so the recipient can come and help.

The app also has a “panic” button. If the wearer feels a seizure coming on, they can press it to warn their contacts. It is the only function Kathryn has had to use in the past year – although thankfully she hasn’t had any more tonic-clonic seizures.

Freedom/Safety

“Things are under control now, but we know that they might not always be,” she says. She has shared the software with contacts at the BC Children’s Hospital in Vancouver, where she used to work as a counsellor for people with epilepsy. “Hopefully they’ve had a chance to tell some other neurology specialists about it. We just want to get the word out and let people know it’s available.”

The Clarks say the watch has given them an increased sense of security and peace of mind.

“Most people with epilepsy and other chronic conditions will tell you it’s always a struggle to balance freedom with safety, independence with responsibility,” Kathryn says. “Once you get over the shock that you have seizures, you do have to get down to, OK, how am I going to live with them? This has been the answer in a lot of ways for us.”p

In Preparation of Nick's Transition IEP - Facts Make all the Difference

Nick's Transition IEP is coming up and my goal is to get his entire team committed to making sure he leaves school with skills that will increase his independence. He's been in school for a long time now, and my emphasis is NOT on teaching him more in the classroom, rather I am focused on helping him generalize the skills that he has learned, in the real world. 

Nick going to sing in the choir
Holiday program! 

At first the school would not build a custom IEP for him that meant him being out of the classroom, which we corrected in mediation. As a result he is only in his special day classroom for 1.5 periods. The remainder of the day is spent working in the the cafeteria, participating in Choir, being a teachers assistant for a PE coach, working on the school farm and participating in ceramics where he also assists the teacher. This plan insures that Nick has to interact with various people in various settings and is given the opportunity to apply what he has learned in the classroom to get a job, and feel good about himself. 

That said I thought it was important to give everyone involved in the process a full perspective, because if I've learned anything, I've learned that I can take nothing for granted. You might want to share this too. It's an easy overview and it makes the case for every kiddo who wants to be more independent. 

Autism Spectrum Disorder (ASD) is the fastest growing developmental disability in the

United States. Beginning in the late 1980’s, autism diagnoses began to skyrocket,

now affecting 1 in 68 children in the United States: a 1350% increase since 1993,

according to the Centers for Disease Control and Prevention. This makes ASD more

common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An

estimated 1.5 million people in the U.S. and tens of millions worldwide are affected by

ASD. These children are now becoming young adults. About 50,000 young adults on the

autism spectrum turn 18 every year.


A Life Long Developmental Challenge

Addressing the epidemic of aging young adults with autism is a significant challenge for

families, our state, and our country. Autism is a life long developmental challenge. In the

coming decade as many as a half million children with autism will reach adulthood. Yet

very few residential and vocational development programs exist for them. The options

that do exist often have waiting lists of 8 to 10 years. Frequently, adults with autism are

placed in facilities or programs that are neither designed nor equipped to handle their

specific needs.

It's estimated that there will be a 300% increase in the number of young adults needing

residential services by 2020 with continued increases each year thereafter. These young

adults are aging out of the education system beginning this year.

No Pathway to Work

The growing demand for employment programs to support those with ASD has reached

a crisis level. Young adults with ASD in the U.S. workforce are scarce: 90% of people

with ASD are either unemployed or under-employed. Nearly seven years after graduating

from high school, 1 in 3 young adults with autism lack a college education, technical

training, or paid job experience. Only slightly more than half of young adults with autism

have ever worked for pay since leaving high school, according to a survey published in the

Journal of the American Academy of Child & Adolescent Psychiatry. Roughly 85% of

those with a moderate disability have worked and just 12% of the most severely disabled

have work experience. By comparison, young people with emotional disturbances,

learning disabilities, or impaired speech and language were roughly five times more likely

to have held a job. People with intellectual disabilities are twice as likely than those with

ASD to have been employed since high school.

Startling New Numbers: Study Reports Autism Prevalence Up 30% from 2012

Another study, another conclusion and it seems we are no closer to providing solutions for families. For those of us living with autism, we know that the number of children being diagnosed is increasing because more kids have autism, and because the tools for properly identifying this complex disease are improving. As the tools improve children who were previously diagnosed with other illness now have a more accurate diagnosis of autism. So what we have is reclassification, a shuffling of sorts that brings the real picture into focus.  

Temple Grandin

(CNN)On the surface, it looks like the number of children in the United States whose parents say they have autism spectrum disorder has grown significantly. But this latest study from the National Center for Health Statistics begs a bigger question: Are there really more children with autism, or did the way in which the United States collects that information affect the reportable number?  http://www.cnn.com/2015/11/13/health/autism-numbers-inflation/

This latest study looks at data collected in 2014. When they gathered that information, the survey that they gave parents took a new approach to asking about autism and changed the order of the questions. With that switch, the number of children believed to be on the spectrum is 2.24% -- that's 1 in 45 children. That's a large increase. 

Study authors wondered whether the changing survey method has had an effect on the numbers; that's because the number of children who parents say have another developmental disorder went down significantly. That number fell from 4.84% in 2001-2013 to 3.57% based on 2014 data. That could mean, the authors say, that parents were selecting autism as opposed to another developmental disorder in part because the question about autism comes before questions about those other disorders.

Governor Brown Stifles Bill That Would Provide Essential Funding Increase for Development Services

Seems our fight is NOT over. The future is not looking bright for our children as schools, states, politicians and insurance agencies realize the long term expense of caring for individuals with autism and other developmental disabilities. They are fighting to pass the expense on to someone else and stall efforts due to bipartisan inaction. This is a human issue and I'm sure Democrat, Republican, Tea Party and Independent party families are united when it comes to getting care for their loved ones. Sadly, any party being right won't be enough when it comes to budget. Families can't afford care on our own, so our only option to is be LOUD and let politicians know that Autism and developmental disabilities are not just an in topic to mention in speeches to get the attention of our families, but a real issue, and we demand their support!  

Write a letter, make a call or watch and see where the chips fall. I promise if we are not heard it will not be good. 

Donna

Bill would yield needed funding increase for developmental services

By The Editorial Board, LA Daily News

In August, when the Legislature’s special session on health care and developmental services was in still in session, we criticized Democratic leaders for not bringing forward good bills by their Republican colleagues.

Sen. Ed Hernandez, D-West Covina, talks with Senate President Kevin de Leon, D-Los Angeles, in this file photo. Hernandez is co-chair of the Legislature's special session conference committee on health and developmental services.(AP Photo/Rich Pedroncelli 

Now, with more than two months of hindsight under our belts, that obviously partisan inaction looks even worse.

If Senate Bill X2-4, by Republicans Jim Nielsen and Jeff Stone, had passed and been signed into law, it would be well on the way to producing the desperately needed 10 percent increase in funding for developmental services that the Lanterman Coalitionsought in the 2015-16 budget.

Instead, Gov. Jerry Brown stiffed the developmental community in the regular budget process and punted to a special session, which has produced nothing.

But it’s not too late. The special session is still officially “on,” with a Senate-Assembly conference committee formed to address the problem. Unfortunately, that committee has not held a single meeting.

If they continue to ignore the one bill that provides hope for additional developmental funding this fiscal year, Democratic leaders would doom nearly 300,000 of their most vulnerable constituents to another year of shrinking services. After seeing their resources from the state shrivel for two decades, that’s not what the developmental community deserves.

Quite the opposite. Californians with developmental disabilities and their loves ones and those who care for them deserve the immediate 10 percent funding hike along with a stable revenue scheme that will bring the system back to the minimum level of services promised in the 1969 Lanterman Act.

SBX2-4 would sweep unanticipated revenues — tax money above and beyond that budgeted for last fiscal year and this one — into funding for developmental services and Medi-Cal. It mandates that the director of the state Department of Finance, by Jan. 10, 2016, and again by May 14, determine excess revenue, subtract the amount that must go to schools under Proposition 98 and to the state’s rainy-day fund under Prop. 2, and direct the rest to developmental services until that 10 percent increase is funded, retroactive to July 1, 2015; any money left over after that would go to Medi-Cal providers.

The 2014-15 fiscal year ended with $732 million in unanticipated revenue, according to the state Department of Finance’s July finance bulletin. In the first three months of the fiscal year, the department reports, “Year-to-date revenues are $744 million above the expected $22.855 billion.”

That’s easily enough “extra” cash to give developmental services the 10 percent funding increase, which would cost about $350 million.

So what’s the problem?

The Legislature should simply get off the dime and pass SBX2-4.

Sen. Ed Hernandez, D-West Covina, failed to bring SBX2-4 forward to be heard as chairman of the special session’s Senate committee. Now we urge him and Assemblyman Rob Bonta, D-Oakland, co-chairs of the conference committee on health and developmental services, to convene their committee and to hear and debate SBX2-4 while the money is rolling in to state coffers.

Halloween - AKA The Day All Kids Are Equal !!!! Teens and Adults Too :)

There are three things I love about Halloween, that no other holiday offers! 

One: When else can you go to a strangers house, knock on the door, demand candy AND they give it to you! Amazing 

Two: It's the one time of year I can take both kids out on the town and they are treated the same! As we travel the neighborhood everyone is focused on the costumes, the fun and not on what may or may not be different about each trick or treater!  And for the most part, the people who happen to notice something different are usually parents - who have a kid like Nick at home - who offer Nick more! 

Three I love getting the family all dressed up every year. Here's an oldie that I love :) 

Happy Halloween.

How to Dance In Ohio - 3 Young Women Ready for the Prom

So excited to see a film about autism that focuses on girls! Since 80% of those diagnosed with autism are boys, the girls are left out of the conversation way too often.

 

Watch: Exclusive Trailer for HBO Doc 'How to Dance in Ohio' Will Move You

By Karen Brill | IndiewireSeptember 25, 2015 at 11:40AM

"How to Dance in Ohio" debuted at the Sundance Film Festival earlier this year.

"How to Dance in Ohio" asks the question, how do you prepare for the social event of the season when socializing itself can be paralyzing?

In the HBO documentary, three young women, each living with autism, ready themselves for a teenage rite of passage: The spring formal. Their preparation includes rituals both familiar (dress shopping, dance lessons) and uniquely challenging (therapy). Directed by Alexandra Shiva, the moving film debuted at the Sundance Film Festival earlier this year.

"How to Dance in Ohio" premieres on HBO on October 26. Watch the exclusive trailer above.

READ MORE: Sundance Women Directors: Meet Alexandra Shiva - 'How to Dance in Ohio'

Take This Opportunity To Speak Out Regarding Services We Want

My friend and colleague, Pam Wiley Ph.D. CCC-SLP  is working on all of our behalf to help our kids get the services they need and she wants your input. Please take a few moments to help Dr. Wiley help us, by completing the brief questionnaire below. 

Thanks,

Donna 

Parent Survey: ASD Services Over Age 21

Dear Parent,

My name is Dr. Pamela Wiley and I am licensed speech-language pathologist and Fellow of the American Speech-Language-Hearing Association. I am conducting a research study to get the opinion of parents of young adult children with autism spectrum disorders (ASD) regarding specific services available and needed after age 21.  Your opinion is important to me and I would like your input as we expand upon existing services and develop new programs to serve your young adults with ASD.

Included in this email is a link to Survey Monkey.  There you will find a survey that can be completed in ten minutes or less. All of your responses are anonymous and confidential and we will not be able to tie your responses to you. Your participation is completely voluntary and data will be kept for three years past the life of the study. 

Should you wish to withdraw from this study, you may do so at any time with no penalty to you and your answers will not be sent to us by Survey Monkey. There are no anticipated risks expected as a result of participation in this study. However, we would greatly appreciate it if you would agree to respond to the survey.

The initial results of this survey will be professionally presented at the American Speech-Language-Hearing Association national conference.

Clicking on the link below provides your consent to participate in the survey and gives us permission to use your responses for our research study. 

Please complete by October 30, 2015. Thank you for your time.

https://www.surveymonkey.com/r/youngadultsASD

Sincerely,

Pamela Wiley, Ph.D. CCC-SLP

ASHA Fellow

Sesame Street welcomes Julia a Muppet with Autism and Educational Tools to Help Families

'Our goal is to bring forth what all children share in common, not their differences'

Sesame Street is hoping to help destigmatize autism by introducing its first autistic muppet, Julia. She’s part of a new initiative called “Sesame Street and Autism: See Amazing in All Children,” People reports. The initiative includes a free app that uses storybooks, video and other visual media to assist autistic children and their families with daily tasks.

“Families with autistic children tend to gravitate toward digital content, which is why we created Julia digitally,” executive vice president of global impacts and philanthropy, Sherrie Westin, told People. “We want parents and children to understand that autism isn’t an uncomfortable topic.”

In the storybooks, Julia explains to her friends how she plays a little differently. “If you’re five years old, and see another kid not making eye contact with you, you may think that child doesn’t want to play with you. But that’s not the case,” says Westin. “We want to create greater awareness and empathy.”

Ultimately, the goal is to destigmatize autism, reduce bullying, and show that autistic kids aren’t really all that different.

“Our goal is to bring forth what all children share in common, not their differences,” says senior vice president of U.S. social impact, Dr. Jeanette Betancourt. “Children with autism share in the joy of playing and loving and being friends and being part of a group.”

Employment and The Rising Cost of Autism

Another reason to create employment opportunities for individuals with Autism. 

They contribute more, and you contribute less.