Hacking Autism 2nd Live Chat!

Join us tonight!

On Tuesday September 13, at 7PM there will be a LIVE Chat with the community and the members of the Hacking Autism advisory Board to discuss YOUR ideas! We want to know what you think and to collaborate with you on refining and selecting the best ideas!

Join the conversation HERE!

Hacking Autism Partners

HP • Autism Speaks • Doug Flutie Jr. Foundation • Goodby, Silverstein & Partners

Overview

Autism, one of the fastest growing developmental disorders in the U.S., affects 1 in 110 children. Many of these people have difficulty communicating and expressing themselves. We believe technology can help. Technology is in no way a cure. In fact, we’re not out to cure autism. Our goal is to help people today, with the knowledge and skills we have.

WE NEED YOUR IDEAS!

Technology has always promised to make our lives better. Finally, it’s actually doing it. Touch technology is giving people with autism a way to communicate and express themselves like never before. It is giving people with autism a voice. Some, for the very first time.

By working together to create touch applications for people with autism, the HP Hackathon is unleashing software’s potential to adapt hardware and advance technology. It’s an invitation for the tech community to unite. It’s an open call for collaboration that will make a real difference in the lives of a growing community.

WHAT IS HACKATHON?

The Hackathon event will bring together Hacking Autism’s Advisory board, experts in Autism, technologist and people on the spectrum. This catalyst event takes the ideas submitted to the Hacking Autism website to a multidisciplinary group to actually create applications for people to use free of charge.

Advisory Board
Phil McKinney - HP
Chris Mertens - HP
David Canora - Disney
Jim St. Leger - Intel
Jennifer Leighton - Spaulding Outpatient Center for Children
Kate Grandbois - Spaulding Outpatient Center for Children
Peter Bell - Autism Speaks
Andy Shih - Autism Speaks
Simon Wallace - Autism Speaks
Shannon Kay - May Institute
John Robison - Autism Speaks

Hacking Autism LIVE Chat!

Partners
HP • Austim Speaks • Doug Flutie Jr. Foundation • Goodby, Silverstein & Partners

In the aftermath of Hurricane Irene, we have decided to postpone the first live Hacking Autism web chat. We understand that there are many families along the east coast struggling with power outages, loss of internet and phone capability and some with damage to their homes. We hope our community came through the storm safe from harm. Therefore our 2 web chats will be:

-Sept 6th 7pm EDT
-Sept 13th 7pm EDT

You will be able to join HERE.

Overview

Autism, one of the fastest growing developmental disorders in the U.S., affects 1 in 110 children. Many of these people have difficulty communicating and expressing themselves. We believe technology can help. Technology is in no way a cure. In fact, we’re not out to cure autism. Our goal is to help people today, with the knowledge and skills we have.

WE NEED YOUR IDEAS!

Technology has always promised to make our lives better. Finally, it’s actually doing it. Touch technology is giving people with autism a way to communicate and express themselves like never before. It is giving people with autism a voice. Some, for the very first time.

By working together to create touch applications for people with autism, the HP Hackathon is unleashing software’s potential to adapt hardware and advance technology. It’s an invitation for the tech community to unite. It’s an open call for collaboration that will make a real difference in the lives of a growing community.

WHAT IS HACKATHON?

The Hackathon event will bring together Hacking Autism’s Advisory board, experts in Autism, technologist and people on the spectrum. This catalyst event takes the ideas submitted to the Hacking Autism website to a multidisciplinary group to actually create applications for people to use free of charge.

Advisory Board
Phil McKinney – HP
Chris Mertens – HP
David Canora – Disney
Jim St. Leger – Intel
Jennifer Leighton – Spaulding Outpatient Center for Children
Kate Grandbois – Spaulding Outpatient Center for Children
Peter Bell – Autism Speaks
Andy Shih – Autism Speaks
Simon Wallace – Autism Speaks
Shannon Kay – May Institute
John Robison – Autism Speaks

Profile on a Grant Recipient - Chris Abel

In 2003, Monadnock Developmental Services in New Hampshire was awarded a grant by the Flutie Foundation to help their clients pursue athletic endeavors as a way to gain social skills. With the Flutie grant money and MDS support, Mount Sunapee was willing to open their weekend competition program to include Chris Abel - a then 8-year-old boy with ASD. Chris has been a competitive snowboarder ever since. Chris' mom Amee checks in with an update on his snowboarding career:

Dear Flutie Foundation,

After the lovely profile you did of my son Chris Abel, I wanted to update you on his latest successes.

As you recall, it was a Flutie Foundation Grant through Monadnock Development Services that gave him the chance to begin snowboarding--and snowboarding has been a place where Chris has gained respect from his peers and made friends. This year, Chris is a

sophomore at Keene High School (in New Hampshire.) Additionally, he has spent the 2nd and 3rd school quarters as a Winter Term student at Mount Snow Academy, which has allowed him to train 4 days a week, compete on weekends, or travel around the country to compete, while still meeting his academic requirements. Chris has maintained straight "A"s this year, while competing in 8 USASA Southern Vermont Snowboard Series events and 6 USSA Revolution Tour events and the Burton Global Open Series US Open event.

His USASA results earned him an invitation to compete in Halfpipe at the USASA Nationals at Copper Mountain in Colorado this past week. He finished 7th in the Halfpipe event for the Men’s Youth Division against a field of 66 of the country's top Youth Men!

Competing on Monday, April 4, the snowboarders faced aggressively cold conditions and gusting winds all through qualifiers with the sun warming things up for finals. The judges were impressed with the entire Youth Men division as competitors threw down, really stepping it up on amplitude, technicality and style. The competition format allowed two runs each for the 66 invited riders with the top 12 men progressing to the Finals. In the Finals, the riders again had two runs to impress the judges.

Danny Kass, a former USASA competitor who went on to take two silver Olympic medals, was at Copper Mountain to ride in the Monster Energy Drink’s Monster Mash (a pro/am event in its second year, running congruently with the USASA Nationals.) Kass is living proof that USASA shapes snowboardingʼs future stars. “The Nationals is where all the top competitive snowboarders started and learned the tools they would need to reach their highest achievements. I started my first nationals at age 12 and continued in it until I was 18,” said Kass. “It is exciting for me to ride and see the next generation of shredders on a long road to the X Games and hopefully the Olympics.”

Chris’ bid for National’s success was almost thwarted in the last 3 weeks due to equipment difficulties. Luckily, Mtn Riders board shop in West Dover, VT stepped in to sponsor Chris and worked with Lib-Tech’s local representative to get a new “Attack Banana” board under his feet in time for a busy competition schedule that included the US Open at Stratton Mountain, the Revolution Tour at Mount Snow and culminated in the trip to Colorado for USASA Nationals. Dropping regular into Copper Mountain’s 22-foot halfpipe, the Keene teen’s run was a Front 540, Back 360, Switch Back 360, Straight Air, Front 720, finishing with a Cab 540.

The USASA National Championships are representative of 35 USASA Regional Series throughout the United States. This season the USASA will organize more than 500 snowboard events hosted at more than 200 resorts nationwide. The 2011 National Championships is expected to attract more than 10,000 people to compete and watch the week of competition and daily festivities.

For more information:

Amee Abel - aabel98@hotmail.com

Photo courtesy of Jo-Ann Gerde

Nick's Story - Continued

Last October we introduced you to Nick Stephen - a young man with autism who was the 2010 recipient of the Doug Flutie, Jr. Award. Nick is in his second semester at Bridgewater State University and took some time out of his busy schedule to send us an update of his progress as he navigates his way through his Freshman year as a student with ASD.

My first year at Bridgewater State University:

When I started first semester of my first year at BSU, I was a full-time student. On Mondays, Wednesdays, and Fridays I had

Pre-calc Math, Human Geography, and US History. On Tuesdays and Thursdays I had Colloquium and Writing I. Things started to get pretty stressful later in the semester. Learning about the college campus and how different classes are was tough. I had never had to walk between buildings and never really bought meals to eat on my own. The campus is like a big city of students! Human Geography started to become really hard for me to understand. There was so much to learn in this one course and I was having trouble making sense out of it all. I worked hard but did not seem to be getting anywhere with it. I did like the lecture when we watched the movie Do the Right Thing. There was so much homework for each class and weekly quizzes, I felt like I was going to go crazy like Wild Bill from Stephen King’s The Green Mile. I decided, along with my academic advisor, that I should drop Human Geography so I could focus better on my other classes. I was able to do that without it affecting my grade point average. I had to run across campus to the registrar’s office before it closed on the last day you could drop courses.

By the time I was getting close to the final exams, I was starting to feel nervous. You see, I have really bad nervous issues with tests. It stresses me out, due to the time monitoring. Even though I have untimed tests and can take them in the Academic Achievement Center, I still have such a hard time. I failed my History final and I was very ticked off (I always got A’s in History and I really like the course). On my Math final I got a D, and boosted it up to a B with an oral exam between me and my math professor. I got a C in English for my working portfolio and told my English professor to keep it as an example. I got an A in my Colloquium class. Because I failed the History final, I failed the class and will have to repeat it. I had to wait on pins and needles to see if I was going to have enough credits to continue at BSU or start all over again at another school. My other three courses were what saved me.

Before returning to campus for the spring 2011 semester I decided I wanted to go part-time so I could have a chance to concentrate on fewer classes and get better at being a college student.

On Tuesdays and Thursdays, I have Writing II, Colloquium and Fundamentals of Music. I was reluctant to take the Music class even though I have played the piano for so many years but it fit into my schedule and it will fill a core requirement. It’s a tough class even for people with music backgrounds. Things are much more comfortable for me since I became a part-time student. I am going to take an Art course at Quincy College this summer and the credits can get transferred to BSU. Taking a class in the summer will keep me going with the flow so that I can little by little work my way back to being full-time and maybe living on campus in the future.

I also have two new friends. One is my mentor, Mike, who is a Junior. He lives on campus but he also lives in my hometown. I get together with him on Thursdays between classes. He’s a really nice person. Through Mike I met another upper classman named Bryan. The three of us have lunch together on Tuesdays and Thursdays. We are even making plans to hang out a bit this summer. Who knows? Maybe we will be lifelong friends.

All in all I guess you can tell that I really like being in college. There are not as many bullies here and the professors are really helpful if I can let them know what I need to get through a course. In the fall, I am going to be taking the first course for my major, Earth Science. It is called Physical Geology and it has lab with it too. I am also taking a First Year Seminar requirement. I chose a course about American Science Fiction – one of my favorite subjects. If all goes well and I pass, I will be a sophomore for the spring semester of 2012. Not too bad for someone who no one thought would even graduate high school!

--Nicholas James Stephen

April 18, 2011

*Photo - Nick (Right) accepts his Doug Flutie, Jr. Award alongside Doug Flutie and Dougie, Jr. Photo credit - Derek Wilmot

A Deeper View

As part of the 2011 Laurie Flutie Computer Initiative, the Flutie Foundation has partnered with A Deeper View, the makers of a special kind of web-based diagnostic software to help the specific needs of children with autism. To kick off this new partnership, A Deeper View is providing 40 bundled licenses with support for the forty 2011 recipients of the Laurie Flutie Computer Initiative. For others that wish to experience the A Deeper View software, contact ADV and tell them that you heard about their product from the Doug Flutie Jr. Foundation for Autism and they will donate a portion of the license fees to The Flutie Foundation.

I thought I was prepared to be a Mom. As a special education instructor for over 7 years, a 3rd generation teacher (Grandma, Mom and several cousins are all teachers) and the oldest of 5 siblings, I was a highly educated and trained professional. In fact, I would boast that I could be successful with any child. There was nothing I couldn't handle. Then came Ben.

Let me be very clear – Ben is a blessing. He is a delight in our life and my love for him knows no limits. He is also an extremely challenging child. Like many of you, we have already gone through a litany of diagnoses, several medications, one hospitalization and more therapies than I can count. I have read tons of books, spent hours on the internet, contacted “experts” and taken every ‘staff development training’ on behavior and autism offered. Until recently, everything I did was hit or miss. Improvement was sporadic at best. Life was a roller coaster and there were days I just wanted to get off! I had no way to measure success, relying only on my own, somewhat biased observation. Then I was introduced to A Deeper View.

I was introduced to ADV through my position as an RtI Coach. Michael Darden, owner of A Deeper View, did this wonderful presentation for all of the RtI coaches. He showed us how easy and portable it was to take data using his HP TouchSmart PC. I had never seen anything like it before. It was the perfect blend of function and form. I immediately saw huge possibilities for both my profession and my family. While this is an amazing tool that will greatly improve student achievement, I needed this for my child. I immediately contacted Michael to ask for help.

Michael has created a unique and versatile system. Like most solutions, it is both simple and elegant. After some brief training and a few “Go-To” meetings, I was ready. The first behavior we decide to tackle was our night time routine. I dreaded every night around 8:00, because that when “it” would start – the screaming, the yelling, the complaining, the back and forth. In my mind this seemed to last for HOURS, but when I started using ADV, I realized that even on the worst nights, it really only took about 20 minutes. I was not until I really analyzed what I was doing, how I was reinforcing (or in my case “not”) that I finally started to see improvement. In fact, we only had to spend about two weeks consistently before we saw lasting results. After another week or so, we didn't even need to take data. Our night time routines were quiet, calm and less than 15 minutes. Now whenever a new “behavior” appears, I simply put in a new target and starting getting to work. What I am amazed at his how quickly this method works. When you can clearly see the situation for what it truly is – the solution presents itself like magic.

I am a firm believer that the power to help our children lies with responding to what the data is depicting. Even though I know all about charts and such, I was in no mood to do this at home as well. ADV made collecting the data so easy, that I could spend my time doing more things that would help my son. I thought I was prepared to be a Mom. Now that I have the right tools, I am! I look forward to sharing more success stories with you.

Lisa Baker

Rolling Into Second Semester

Back in October we brought you Nick's Story about a young man with autism navigating his way through his first semester of college. Today, Nick's mother Janice follows up with the results of his first semester of school and looking forward to the second semester.

Here I am again, in the lobby outside the bookstore at the East Campus of Bridgewater State University. Nick started classes today for the second semester. For a while there, we were not sure if he was going to qualify to come back or if he was going to have to start all over again – perhaps at Cape Cod Community College. In anticipation of that possibility, Nick enrolled in two classes there as well pending his final grades from BSU.

First semester was a chore and a huge learning process for all of us. To begin with, Nick was carrying a full course load. It took until halfway through the semester for us to figure out what was available for supports and the proper paperwork/channels to go through to get them in place. Nick had extended test times with his exams taken in the Academic Achievement Center, and he also had note takers. Toward the middle and end, he utilized the tutoring center as he prepared for final exams. He was given a reader for one of the exams. Nick also had a Grad Student mentor that he met with twice a week. I do have to say that the Disabilities Center and AAC were very helpful; however, these supports did not pan out to be all he needed. Nick has a specific language disorder related to his ASD called Semantic Pragmatic Language Disorder. In short, he is translating all day and sometimes he interprets things incorrectly. When left on his own to read, take a test, etc. you can actually see where he strayed and sometimes it can be really comical because he takes things so literally. That being said, modification of language is a must but however, it is not something that is considered a “reasonable accommodation”. Wonderful, cut off his feet and tell him to run.

Nick’s Calculus professor, who is not originally from this country, recognized this difficulty about halfway into the semester. She took it upon herself to verbally access Nick in addition to his written tests. That to me was such a blessing. Nick’s English professor took the time to go to the Disability Center and ask what he should do to help Nick pass the course. Such dedicated educators are few and far between when you are traveling the ASD road.

When the grades came in, Nick ended up with an A- , two C’s and unfortunately an F in History – a class which he has been a straight A student in the past. He was in contact with the History professor over the break and found out that he failed because he did not pass the midterm or the final. He has offered to speak with us in the next week or so. So, now Nick is on Academic Probation, which as I remember and still holds true, is not uncommon for first semester freshmen. We attended a seminar on Tuesday and rearranged his schedule to a more comfortable level. Nick is attending part time, seven credits, two days a week. He is taking the second half of Freshmen English and Music Fundamentals (with twelve years of piano lessons and five of drums, he should do well here). We also know that he will need to approach his professors personally to help him with accommodations and he will have the class syllabus posted on his wall at home so I can help him keep track of his assignments. He also learned to check his email more than once a day because this is the way the school keeps connected on all fronts.

Outside of the academics of last semester, Nick made some personal gains that my husband and I are so proud of. Nick always had a paraprofessional with him while he was in school. He brought his lunch every day for twelve years and would not buy so much as a carton of milk at school. Nick navigates the campus alone, attends his classes alone and ate in one of the cafeterias, buying his lunch, three days a week for the first semester. These are huge milestones!

He has also accepted the fact that it will take him more than four years to obtain a bachelors degree. As always, Nick is motivated and dedicated to succeed. He is an amazing young man.

So – here I sit, basking in the knowledge that my son is doing something extraordinary. It is such a wonderful feeling to be experiencing this with him.

- Janice Stephen

*Photo - Nick accepts his Doug Flutie, Jr. Award at the Flutie Foundation's annual golf tournament in June 2010. Each year the Doug Flutie, Jr. Foundation and Children Making Strides award the Doug Flutie, Jr. Award to a person who has shown great commitment and dedication to raising awareness of autism spectrum disorder, or has made a significant impact in the lives of individuals with autism. The award recipient can be a parent, teacher, advocate, individual with autism spectrum disorder or anyone else who has made a difference in the autism community. Photo Courtesy of Derek Wilmot

To Run or Not To Run

On October 7th, Flutie Foundation Marathon Team Director Chris Chirco sent an email to all of Dougie's Marathon Team's past members inviting them to be a part of the 2011 team. See one former team member's amusing reply below:

Based on his chirpy invitation to join the Doug Flutie Jr. Foundation’s Boston Marathon 2011 team, methinks our dear Christopher Chirco has never run a mile in his life, much less a marathon.

I think the e-mail should read a little something like this:

“It’s that time of year again! The sadists who organize Dougie's Marathon Team want to know if anyone who did it last year has recovered enough to take another crack at running their body into the ground.

Are you mad at your toenails? Want to punish ‘em and make them disappear? Watch your feet sprout blisters the size of an extra toe as you pound your feet mercilessly into the pavement in the name of training.

Ready to take this exciting opportunity to figure out which nasty, thick gel best fuels your overtaxed, dehydrated body but doesn’t make you bolt for the nearest filthy porta-potty? Better yet, learn how to slurp it out of a tin-foil package without dribbling it down your sweaty face.

Now’s your chance to commit to a running program created by Kenyans, for Kenyans. Run, leap, soar, and cry. Cry when your children ask you why you’re even doing this race when there isn’t a chance you’ll win it. Cry when the thermometer reads below freezing on the day of your long run. And cry, cry, cry as you watch your spiteful scale jump up a pound or two after spending a week putting more miles on your body than you did your car. (Kenyans apparently don’t carb load with Oreos.)

Run, don’t walk, to sign up for this internationally famous race - only to spend the better part of your spring cursing yourself.

Look forward to seeing you crawling up Heartbreak Hill!

Most Sincerely,

Chris Chirco.”

No thanks. Find some other schmuck to run this year.

And yet.

And yet I find myself considering running it again.

Of course there’s always the charity angle. If I ran for Dougie’s Team – which is realistically my only chance of stepping one blistered toe into Boston on race day since I surely don’t qualify for it – then I’ll be raising money for autism. Seeing as I have a son with autism it’s nearly a no-brainer. I could re-send the letter claiming how my training will be nothing compared to the struggles Jack faces every day. (I’m reluctant to admit that in my darkest, meanest hours of training last year autism looked pretty darn fun compared to running for 18 weeks straight. While I was lacing my sneakers over my screaming feet it was hard to ignore the image of all my children – Jack included – lingering over their Star Wars-shaped pancakes in their fuzzy pajamas. Frankly, his request for more syrup as I headed out the door seemed ungrateful.)

Raising money notwithstanding, the invitation to the Marathon has piqued my interest. Once again, I’m being offered a chance to participate in one of the most prestigious races in the world. And goodness knows I wouldn’t mind a second chance, a chance to do it better, faster, and with less visits to the porta-potty because of the pre-race Dairy Queen blizzard I mistakenly treated myself to last year.

Why, I’ll do it right this time! Better nutrition! No dairy! I’ll sprint cheerfully up the hills of Bedford and be sure to stretch afterwards. I’ll rest when I hear my body screeching in protest and push myself in moments of doubt. I will not complain to everyone at Saturday night’s party how I have to “run 18 miles before you even get out of bed tomorrow” as if I’m a member of the United States Army.

This time, in addition to autism, I’ll run it for myself.

Or not.

~Carrie Cariello

Member of Dougie's 2010 Marathon Team

Update on Carrie's decision - She did end up accepting the number only to have to change her mind due to a running-related injury just days later.