Archive
The Puzzling Piece: I'm a Mom on a Mission!
January 18, 2012
By Melissa Winter
The following is a message from Melissa, a mom on a mission and founder of The Puzzling Piece!
Visit www.thepuzzlingpiece.com for more information about how you can take the iPad challenge, get unique Valentine's Day gifts AND help the Autism Society!
Topics:Living with Autism
Finding Ways to Mask Bad Behaviors
January 12, 2012
By Lee Passehl
Hello everyone! In this issue of my blog I would like to talk about my past experiences in Radio Control Car racing. When I was younger, during a race I would swear a lot on the drivers' stand. I would swear when I hit a board or rolled my car over. I also yelled at slower racers who would not move out of my way. I never swore around my parents when I was at home. But when it came to an intense race, it would come right out of my mouth, like a reflex action. This upset the owner of the track, who I respect greatly. He told me that if I continued this type of behavior I would be banned from the track for life. I couldn't hold it in, it just seemed automatic. This scared me a great deal because if I lost the right to race at Trackside Raceway, my dream of winning the Tamiya North American Finals would be over and I knew that would be like losing my life. I had to find something that would prevent me from swearing. But what could I do if could not control myself?
I found a way.
Two nights before a points series race in Green Bay, I went to a local sports store and found a boxing mouthguard. When I took it out of the package, I tested it by swearing a few times to see if anyone could understand me. I used it for the first time and it worked awesome. It kept me from dropping obscenities. I used the mouthguard for about four years until I didn’t think I would need it anymore. It helped a lot. I write this to help you know that you can find other ways to mask bad behaviors. Get creative. People thought I wore the guard to protect me from clenching my teeth. I know the real reason.
Thank you for reading my January issue of my blog. Again, I welcome comments.
Topics:Living with Autism
Help Me Be the First Miss America in 91 Years to Have an Autism Platform
January 4, 2012
By Natalie Davis, Miss Minnesota 2011
This is my last Autism Society blog before I leave to compete in the Miss America pageant this month. It is important to me that the followers of this blog know that Miss America is more than just a beauty pageant. The Miss America Organization has given me a voice and an opportunity to take my personal experience with autism and channel it into service work that positively impacts my community. I would like to take this time to share my personal connection to autism as well as some of the ways I have been working to improve the lives of people impacted by this condition.
My brother Trevor has an Autism Spectrum Disorder (ASD) called Asperger’s Syndrome. My passion for autism stems from my personal connection to the condition. First and foremost, I serve as a supportive sister. I have been Trevor’s swimming teacher, tutor, coach, advocate and best friend.
Trevor’s struggle to make friends and his success in doing so after enrolling in a social skills class inspired me to found Awesome Club, a social skills program for special needs children that meets weekly in the Northfield School District, near where I attend St. Olaf College. I wrote a program proposal, met with the district’s autism specialist, special education teachers and superintendent, and solicited volunteers from my college. Since its inception, Awesome Club has experienced tremendous growth. It began with four students and four volunteers. Four years later, Awesome Club now serves over 30 special needs students at two different schools.
| Awesome Club |
During the six and a half months that I have been Miss Minnesota, I have traveled over 17,000 miles, working to increase awareness of ASD by speaking at schools, civic organizations and community events. My message of hope and success for individuals with ASD has reached even more people through the use of radio, television and social media. I have collaborated with numerous autism organizations, including the Autism Society of Minnesota as its official spokesperson and Steps of Hope committee member, and the Autism Society of America as a spokesperson and popular blog contributor. I have also volunteered with Autism Speaks, CADE (Children with Autism Deserve an Education), Holland Center, West Metro Learning Connections, Southwest Minnesota Autism Coalition, Fraser, ARC, and the Minnesota Autism Center. I participated in the production of a training video for Boy Scout troop leaders working with children with ASD, which I hope will eventually be distributed nationally to create a more inclusive environment for kids with ASD who hope to find success through Boy Scouts of America. Recently, I met with Governor Mark Dayton to discuss important legislative action related to the Minnesota autism community. My passion for this issue is evident in the number of miles I have traveled, the number of organizations with which I have networked, and the number of people I have touched with my personal story.
I am relaying some of the work I have done, not to toot my own horn, but to let America know that I am serious about working on behalf of the autism community. I leave to compete at Miss America next week, and I may have the opportunity to bring my autism advocacy to the national level as your new Miss America. I need your help. America has the chance to vote one contestant into the Top 15 at the Miss America pageant, which will air LIVE on ABC on January 14, 2012. Each contestant created a one-minute video indicating why she should be the next Miss America. My reason for wanting to be Miss America is greater than myself. I want to bring national attention to the issue of autism by becoming the first Miss America in its 91-year history to have an autism platform. Please, go to www.missamerica.org/videocontest to cast your vote to get me into the Top 15 at the Miss America pageant. Don’t forget to watch me compete for the title of Miss America LIVE on ABC from Planet Hollywood Resort & Casino on Saturday, January 14. And, if you happen to host a viewing party, please take photos and tag “Miss Minnesota 2011 – Natalie Davis” on Facebook!
Thank you, and have a blessed new year!
Natalie Davis
Miss Minnesota 2011
To learn more about the Miss Minnesota Organization, please visit www.missminnesota.org. To follow me during my year as Miss Minnesota, read my blog at www.nataliedavis.weebly.com.
Topics:Living with Autism, News
The Person on the Other Side of the Counter
December 23, 2011
By Felecia Rozansky
I remember waiting at the grocery store checkout one afternoon and feeling annoyed that the line seemed to be moving very slowly. I looked two customers ahead of me and saw the cashier seemed to be a bit distracted as she was pushing the bananas and paper towels along the conveyor belt.
Then it occurred to me: I really had no idea what this cashier’s life was really like. What kind of home did she go home to? This was the time in my life when my son Eric was still very young, and he had just began early intervention services. My life at home was very difficult. I had my older son, Daniel, who had just turned 4 and was doing all the adventurous and exhausting things that typical 4 year olds do, and I had Eric, who was 2 and a half and doing nothing his peers were doing. Eric just screamed and sat with his dinosaur toys and looked at them all day long, except when the therapists and teachers came to our house…and then Eric screamed for 45 minutes.
On that day I stood in line at the grocery store, I remember realizing that the cashier might be like me. She might be relieved to be away from her home, or maybe she was thinking about what was waiting for her when she returned. Just like I knew what was waiting for me…chaos, loneliness and fear that things might never get better. And this was when I realized I needed to reach out to others. I’m not sure what I really expected to happen, but I knew it was better than being silent.
And now, many years later(about 13), I stand on the other side of the counter in my cookie shop (that’s right…it’s a little bakery shop that specializes in specialty gourmet cookies….all my old homemade stuff). I am proud of my little shop.As I am constantly working for change, I have pledged that a portion of my profits will be donated to the Autism Society. And this little notice on the bottom of my brochure has opened up a whole new world of people into my life.
Sometimes I will mention that a portion of my profits go to the Autism Society. Most people will just give that sympathetic nod and say, “gee that’s great.” I have learned to ignore the sympathy, I don’t really need it. But sometimes the person I am speaking with will stop, lean on the counter and tell me that they too have a relationship witha person with autism. Then the walls come down. And we talk. We’re both curious to know, “how old is the person? Where do they go to school?” And the hardest question, “How’s it going?” This is the moment of truth, and we both tell it. “Okay,” “not so great,”“good days,” “bad days,” “new meds,” “great school,” “horrible teacher,” “no friends”…and the bond is set. Neither one of us is alone, and now we’re reminded, “but I love him, love her” and we keep going. You never know who is standing on the other side of the counter…but I’m beginning to learn.
Felecia is a guest blogger for the Autism Society. Learn more by reading her story!
Topics:Living with Autism
The Greatest Present of All…No Gift Wrapping Required
December 22, 2011
By Dan Olawski
The first time we tried to introduce Mikey to Santa, he ran so far in the opposite direction that he came up behind Ol' St. Nick (think about it…you'll get it, heh, heh). Christmas, Hanukah, all of the holiday seasons, are often challenging times for our children with autism (and for us parents, too).
We celebrate Christmas in our home, and have always tried to have a traditional holiday celebration. Of course, all the standard elements are there: the tree, lights, music, Santa, presents, etc. Ah, but when it comes to autism, as we all know well, standard and traditional are not always standard and traditional.
As I mentioned, the whole Santa Claus thing didn't go over well with
Mikey (as a matter of fact, he didn't care for the Easter Bunny we saw
in the mall, either--but he absolutely loves when we see Chuck E.
Cheese…I guess giant walking rodents are more his thing). He's become
more comfortable over the past couple of years and now quickly
identifies the jolly, stout man in the red suit as “Santa” (or, lately,
the even cuter response when asked who Santa is: “Christmas”).
Christmas
lights and music are even bigger potential problems for children with
autism. But as it was with Santa, repeated exposure in a positive way
(desensitizing) has helped Mikey to enjoy these beautiful aspects of the
season.
Mikey's choice of music is often restricted to the “Bob
the Builder” soundtrack or something similar, so if one of his favorite
cartoon characters is singing a Christmas tune, he’ll pay extra
attention. Being in a classroom environment where music is one of the
tools used to teach has also helped Mikey to embrace all kinds of music.
Just another reason I firmly believe that art and music can be used as a
pathway to getting our children to communicate with us and to helping
them feel more comfortable in an otherwise confusing environment.
As
for the pretty, multi-colored brightness of the yuletide lights, my
wife and I felt warm hearts this year to see Mikey smile and stare as we
drove past the beautifully decorated houses in our neighborhood. We
didn't waste a second taking him to a drive-thru Christmas lights
display, and the excitement that we saw come over him was well worth
every penny of the donation fee. Of course, now daddy is feeling the
pressure to create a Broadway-show-quality lighting display at our home
(I'm afraid Mikey is out of luck on that one…yours truly is not-so-handy
with that sort of thing and my sad attempt at Christmas lights equates
to a lit snowman with a bad habit of falling over into pieces each
night).
The remaining challenge of Christmas that Mikey still doesn't really understand is presents. The first Christmases after we entered the world of autism were a bit heartrenchining, as we would place a wrapped present in front of Mikey on Christmas morning only to watch him get up and walk away or at best be more interested in the gift's box. But we've persevered every Christmas (and birthdays, too) and Mikey is to the point where he’ll rip open his presents' wrapping paper on his own now. We’ve also taken to bringing him to Toys 'R Us and letting him walk in front of us by himself as we watch what toys he'll walk up to or what keeps his interest. At least this way, if we buy those toys for him, we feel like he sort of gave us a Christmas list.
Helping our children with autism through this time of year takes the same focused steps we use every day: patience, love and awareness. Those are the gifts we give our children on a daily basis…no holiday needed…no gift wrapping required.
So, when the holiday is over, the guests have gone home, and the house is a mess, embrace what remains…the true meanings of the holiday (peace, love and family). Hug your child, tell them you love them, and be thankful for the gift you hold in your arms.
Topics:Living with Autism
Ambassadors
December 13, 2011
By Dave Dempsey
Ambassadors.
It is what we call the people who fall in love with Paperworks Studio. You carry the torch and share what we do over a cup of coffee or, like below, an email to friends. From all of the 150+ artists at Paperwork Studio, we sincerely appreciate your will to change lives.
To become an ambassador pf Paperworks Studio and support the Autism Society, visit the Autism Society store.
Dear Friends,
It's a season for causes. Two of my favorites –environmental protection and human dignity – have come together in a mission-oriented social enterprise company, Paperworks Studio. I hope you'll consider making purchases of recycled holiday cards from this company, and in the process support independence for people working courageously to overcome challenges like autism and physical disabilities.
Paperworks Studio, based in Traverse City, MI, engages more than 150 artists who create appealing recycled holiday cards handmade with rose petals, wheelchair wheels and other unusual materials. The artists also make other unique cards not sold anywhere else, including Lee Jeans recycled blue jean cards and cards made with wool sweaters, coffee grounds and other recycled materials. 
I've used the blue jean and the coffee ground cards, and I highly recommend them. If you know me at all, you know I'm always looking – not just at the holidays – for cards to send friends and family that are different from the norm. Now I have a year-round supplier, and I'm glad that the work going into them helps those who create them as well as the planet.
You can order the cards directly here: http://www.paperworksstudio.com/
If you have time for a short video about the Studio, check it out here.
Please give this project all the help you can, enjoy the use of the recycled cards, and spread the word.
Thanks.
Dave Dempsey
International Joint Commission
A Paperworks Studio artist hard at work
Topics:Living with Autism, News
Melissa's Story: Autism, Jewelry and Making a Difference
December 12, 2011
By Melissa Winter
My name is Melissa Winter and I have two boys: Max, 7, and Sam, 4. Three years ago I saw a need in my community to raise money and awareness about autism, so I launched an organization called The Puzzling Piece that could fill that need. Since then, I’ve been able to help families like mine and the nonprofit organizations that serve them.
My oldest son Max was diagnosed with autism when he was three-and-a- half years old. Imagine sitting in a doctor’s office hearing the words, “Yes, your son has autism.” Of course, we knew something was wrong. We already had Max in therapy four hours a week. But the final diagnosis was something we would need time to wrap our heads around.
Max and Mom
After the crying was over, my husband Brett and I realized we needed to make some changes to help Max. A lot more therapy was needed! Brett and I did a lot of research and found that being outdoors, doing, seeing, touching and, yes, playing would be some of the best therapy we could give Max. So, we decided to move from New Jersey to South Florida. The sun and warmer weather meant more time on the playgrounds and in the pool. The additional time Max could play and smile was exactly what I wanted from the move. After a full day of school and more hard work at therapy, an hour of fun in the pool would be the best part of our day.We also found a terrific school for Max to attend that specialized in helping children with autism and related disabilities.
We were looking for a place that would focus on his development and help him thrive in society. We became very involved with the school and wanted to do our part with fundraising. I decided to put my jewelry design degree to work, which is how I came to create The Puzzling Piece. The puzzle piece is a widely recognized symbol of autism, so I designed a hand blown glass puzzle piece necklace, had it packaged in a small gift bag and brought it to the executive director of the school. She loved it! We used it as a fundraiser and it was a success! Our school of 85 children sold 147 necklaces in a week and a half! Everyone got involved from the teachers, to the parents and even the board members of the school. My goal at The Puzzling Piece is to raise awareness of autism.
The Winter Family
Topics:Living with Autism
The World of RC Racing
December 9, 2011
By Lee Passehl
My name is Lee Passehl, and I race Radio Control Cars. I have been racing RC cars for 17 years now. I plan to write many blogs about my sport and how my autism helps and hurts my abilities at the track.
These cars are not toys; they are engineered to race competitively and handle well at very high speeds. They are made out of materials such as carbon fiber, aircraft aluminum, and titanium. They are also made out of high durable plastic and designed take a good hit up to 35-40 miles per hour without breaking. Some are electric powered and can cost from $125-$500, and there are nitro powered cars that can cost from $300-$700. The transmitter that I use to control my car has a mini computer inside. My transmitter (or radio for short) can adjust how sharp the wheels turn and how fast they turn as well, how much the wheels accelerate or spool up, and how hard or soft you want the brakes to engage. My dad works on the car for me.
I am a four-time national champion. In August of 2009, after a 13-year long journey, I achieved my life-long dream by winning the Tamiya North American Finals, which earned me a trip to Japan to compete in the Tamiya World Championship. Right now I am running nitro powered on-road touring cars, and I am running electric powered off road two-wheel-drive buggies. These are all new classes to my father and me, and we are just learning how to run these machines. We started running nitro touring cars in February of 2011, one day before my 26th birthday in a race called the “KO Propo Nitro Grand Prix” a race held in a transit center outside of Los Angeles. This was my first big race running these types of cars. I finished 7th overall against some very good competition from across the nation.
I started racing electric off road in fall of 2011 at an indoor RC race track near Anaheim, CA called West Coast RC Raceway. Off-road is fun and very challenging to run because you’re going over jumps and you have to learn to time the jump right, not to mention some of the greatest professional radio control car racers in the world race here in Southern California. I don’t race in this class in off road right now, but someday I might.
I hope to get some good comments from you, thank you.
Here's a photo of my nitro powered 10th scale car. Speeds up to 65 MPH.
Here I am with my 1st Place
Trophy. The dog tag was the award I received for being the Top Qualifier.
Top 10 Finishers in the UF1
Series... I am in front row, middle.
Topics:Living with Autism
Jobs to Do
December 7, 2011
By Jeff Stimpson
They're talking jobs in Alex's future, as he nears 14 and "vocational" begins to appear on his IEP. They're talking "jobs" in 14 million other futures right now, of course, but as Alex gets closer to adulthood I try to not think about that.
There are various jobs Alex (who has PDD-NOS) can do. Even now in the grocery store he aligns cans so the labels face the same way. At grandpa's lake house, he sets the table for a dozen with the handles of the coffee cups all facing the same way. There are other examples.
Jobs he does:
Alex empties the dishwasher every morning before the sun is up (his school bus comes at 6, and he's often up by 4:30 anyway). “Knives, forks and spoons, Alex,” I say over the lower bin, which I've pulled out after he’s made sure to close the soap box. One by one he drops the utensils clattering into their slots in the drawer. Except for the paper-thin tablespoons my wife Jill paid 25-cents each for, of course. Alex hates those, and morning after morning he tries to slide them unnoticed into the rear end of the drawer.
He does laundry, hauling the heavy cart to the elevator of our apartment building and punching "B" for basement. I still keep an eye on him down there, as it wasn't long ago that he darted for the door and even locked himself in the bathroom. These days, he scoops the fallen socks and underwear from the floor and stuffs them into the triple-loaders. When the laundry’s done, he wrestles the tangles from the washer. Once, when all the triples were taken and we had to use the double front-loaders, Alex stared at the triples then looked for a moment at the doubles. He wanted to understand but the doubles were new to him. He wanted to understand - and I hoped he didn’t realize that other people understand the difference between the doubles and the triples much, much faster than he can.
Jobs he creates:
Sweeping pretzel and cookie crumbs from the cushion of the couch, the floor of the living room, and the bed of his little brother Ned, where Alex perches - never on his own bed - to munch and watch the iPad. “Alex put crumbs in my bed!” says Ned, his arms arcing madly across the sheets. When I was a little kid, I could never sleep when I thought there were crumbs in my bed, either. I don’t like to think about the roaches.
Alex up in the middle of the night and first thing in the morning also means I have to wipe around the toilet bowl. Enough of that, for now. He scatters clothes when he’s picking out what he’s going to wear that day, socks and pants and T-shirts littered around the foot of his dresser like Civil War dead in the Brady photograph around the walls of a fort. Alex scatters Legos and makes Ned cry and then swear. Thanks, Alex!
We learn more about Alex and jobs when we visit his classroom. We learn he orders the supplies for his classroom and delivers newspapers to all the classrooms in his school. We learn too that he sweeps floors and wipes tables in his classroom. Funny he never mentioned that to us.
Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of “Alex: The Fathering of a Preemie” and “Alex the Boy: Episodes from a Family’s Life With Autism” (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on Linked In under “Jeff Stimpson” and Twitter under “Jeffslife.”
Editor's note: Leave us a comment and share the jobs in your life! Don't forget to sign in before commenting.
Topics:Living with Autism
Autism in Real Life: A Conversation with James Durbin: his New Album, Music and Autism
December 5, 2011
By Kymberly Grosso, Autism in Real Life
The following post is an excerpt from A Conversation with James Durbin: his New Album, Music and Autism originally published in the Autism in Real Life blog:
James Durbin, who stood out as an exceptional singer during American Idol, Season 10, brought fresh sounds and performances to America. James consistently challenged the status quo with moving rock and metal tunes. Early in the competition, fans found out that James also has Tourettes and Aspergers Syndromes. Naturally, parents like me and kids like my son, who also has Aspergers, cheered for him throughout the competition. Not only did James shake up the show with his real, in your face emotional performances, he became an instant role model to many kids like my son ,who would watch him on TV and say, "He is like me, and he is amazing!"
With American Idol behind him, James Durbin has once again proved his tenacity and talent as heard in his new album, Memories Of A Beautiful Disaster. He has said the album is a reflection of the struggles in his life and a celebration of his recent success. Perhaps one of the most moving songs on the album, is Screaming, which many people can relate to, as it was written about Jame's own experience with bullying and how he handled it. There are so many powerful songs on the album, and another one of my favorites is Stand Up, which is an upbeat, rocking, "get up on your feet" song. In fact, the NFL added Stand Up to its game day music line up which is sure to make fans stand and cheer.
Recently, I had the opportunity to interview James about his new album, music, his struggles with bullying and his take on autism. He was incredibly gracious, well spoken and reminded me again of the incredible possibilities that are out there for our kids. While I could have written around the interview and provided bits and pieces, I thought it would be best to post the interview in its entirety.
There is a reason he is a role model. He experienced adversity yet he prevails with exceptional music and riveting, live performances. During the interview, James was open and honest about his experiences growing up with Autism and Tourettes, bullying, and how these experiences are reflected in his music. As a parent who loves stories of hope and success, I am so appreciative that James is significantly contributing to American music as well as sharing his perspectives about autism.
A Conversation with James Durbin:
GROSSO: When it comes to the Asperger's, is there anything about having Asperger's that you feel has really helped with your career? Does it affect your music? I know my son says sometimes it increases his focus and he's also really good at memorization. So I was wondering if that helps you with lyrics and things like that?
DURBIN: Definitely. I mean one of the things about having Asperger's is that...I think it's helped me be really involved with what I like. I see this with a lot of autism cases and kids with autism...what they like, they're a genius at it. They know everything about it and I feel like I know everything that my voice can do. More of the other things I've always been into is pro wrestling, and I can talk about wrestling for hours and hours and I don't know. Is your son like that?
GROSSO: Yes, he is like that. He can talk about video games for hours. It definitely increases his focus when it's something he likes.
DURBIN: People with art and drawing and anything with wrestling...I used to draw wrestlers and make collages of wrestlers and cutout pictures. What it was like, it was just all wrestling all the time. I would cut up magazines and paper them and glue them or staple them together, just to have that artistic expression...everything had to be wrestling all the time growing up.
GROSSO: Is there anything about the Asperger's that maybe made things more difficult for you in your career as you've been thrust into the spotlight and having to talk with people all the time?
DURBIN: Yeah. I definitely think that Asperger's there definitely was. Sometimes I still have slip-ups because one of the things with Asperger's -- you could say that I don't really have a filter and things will come out of my mouth, and I won't think about them before I say that and I don't think about the consequences of what I say before I say it.
GROSSO: Are there any sensory issues you've needed to adjust to when you're on stage or singing, like the lights or the noise?
DURBIN: I've always had a hard time with washing my hair, feeling like the wetness in my hands, the squeaky sound. I can't stand when my shoes are wet and I have to walk on like a plastic that makes it make a squeak sound...or like getting in the car with wet shoes and having the heaters on...the gas pedal and everything. It's just like, ugh.
There's more! Read the rest of the story here.
Topics:Living with Autism
