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Thank you for judging me…..

November 21, 2011 66 comments

This post is by Rob, the creator and author of the “Lost and Tired” blog and founder of Android4Autism. He is also the 33 year old father of 3 boys on the autism spectrum. Gavin is 11, Elliott is 5 and Emmett John is 3.  He has been with his amazing wife Lizze  for10 years and married for the past 8. You can read his, ‘Thank you for judging me…..’ post here.

If you were to walk into my house at any given time, you would find many things. Among them, the floor covered with toys and the kitchen with a sink full of dirty dishes. If you ventured into the basement you would see a mountain of dirty laundry patiently waiting to be washed. Look around some more and you would find unmade beds, stacks of unpaid bills and even some shut off notices. Some people would look at this and judging me, say that this is a reflection of me as a parent or my ability to take care of my family.

To those people, I say thank you.

Why in the world would I thank someone for saying something like that? The answer is both simple and complex all at the same time. While under different circumstances I would be insulted, hurt or even angered by those judgmental and thoughtless comments. However, I have 3 boys on the autism spectrum and a wife with chronic and often times disabling health issues.

They require ALL of my time and energy. I’m always taking the kids to therapy or to and from school. Working on language skills and even learning and teaching ASL. I make sure they are fed and clothed and as many of their unique sensory needs are met as possible. I deal with meltdowns, nightmares, sleepless nights and I must ensure everyones safety.

I need have priorities and these things are at the very top of the list. That means everything and everyone else will take a back burner.

So when you walk into my house, see the disaster and think that it’s a reflection of me or go so far as to judge me as a parent, I say thank you. I say thank you because it means I’m doing my job. It means my priorities are in the right place. Make no mistake, I would LOVE to have a clean house and be able to pay my bills. However, raising 3 autistic boys is all consuming, especially when one parent has chronic health issues.

There is only so much time in the day and only so much of me to go around. Choices have to be made. If I have to choose between a clean house, perfect credit and my kids, I will pick my kids every single time.

So thank you.

Thank you for judging me.

Thank you for showing for me that I’m doing the right thing.

Thank you for reinforcing that my priorities are in the right place.

Thank you for pointing out that everything that doesn’t really matter in life is still there waiting for my attention because it means those that do, are getting everything I have.

In Their Own Words: Treasure What You Have

November 21, 2011 3 comments

This is a blog post by Lena Rivkin, M.F.A., is an artist and graphologist living in Los Angeles.

Saturday was the Pumpkin Festival.  As my brother and I wandered around looking at the colorful, wildly shaped pumpkins and gourds, I realized that Halloween is the harbinger for the upcoming holiday season.  While other families carve pumpkins and scheme over costume ideas and how to keep the sugar intake to a minimum- my brother will be needlepointing his heart out.  While other families excavate Halloween and holiday decorations from boxes in the attic, Phillip will be obsessively crossing days off of his large collection of calendars.  While we all ramp up our already hectic schedules to include gift ideas, holiday outfits and double-book numerous get-togethers, it is slightly different for those of us who have special-needs family members.

My brother, Phillip, is a severely autistic adult and lives in a group home in North Hills, California, administered by New Horizons, a non-profit organization dedicated to helping adults with developmental disabilities.  Phillip also attends a day school called Tierra Del Sol Foundation. The 9th Annual Fall Festival was a fun way to raise funds for Phillip’s day school.  Among the great line-up of entertainment was Murphy’s Flaw Band- a terrific bluegrass group and gorgeous Aztec dancers that dazzled the eyes and ears.

Phillip really loved looking at the ceramic crafts hand-made by him and his classmates.  It takes a subtle eye to recognize what Phillip really enjoys since he doesn’t speak and willingly goes along with pretty much everything I suggest.  Sometimes I feel like the narrator of his life. “Isn’t this a beautiful mask, Phillip?” or “Phillip, are you ready for lunch?”  He’ll nod a sort of yes to everything I ask him, especially if it relates to food!  Or I can tell by another look in his eye that he appreciates what I am seeing or is ready to see something else.  When I am with Phillip, if I still my inner voice and erase any personal agenda, I can hear him with my eyes and appreciate exactly who he is, not wish him to be who he simply will never be.

The holidays matter to us as well, just a little differently than everyone else.  When you have a sibling who cannot speak, make direct eye contact or give a hug, a Gap Gift Certificate doesn’t quite manage to bridge the gap.  Phillip would be far happier watching me draw a pattern for him to needlepoint or baking cupcakes with him or simply being with him.  For those who are uncomfortable with developmentally delayed people, when it comes to birthdays or holidays, doing nothing appears easier than wondering whether a gift or card would even resonate.

But focusing on what simple acts delight our autistic family members is the kind of holiday gift that money cannot buy.  I have dear friends who make a point of including Phillip in their life because they recognize he is an important part of my life. They mail him postcards regularly from anywhere in the world, even from home, because they know he is thrilled to receive them.   As Edmund Burke said, “Nobody made a greater mistake than he who did nothing because he could only do a little.”  The greatest gestures can also be the smallest.

Holidays nowadays are more likely to resemble high stakes poker games or full impact sporting events or high spending reality shows than simple exchanges of love and friendship. Holidays can be hallmarks of tiny gestures.  In our fast paced and recession-tired current times, holidays prove to be challenging for all families.

Almost every American has grown up with Norman Rockwell’s cheerfully chaotic portraits of large joyful families crowded around a Thanksgiving table.  For many of us, Rockwell’s iconic paintings hold up a beautiful ideal of family life.  As a child, I truly admired Rockwell’s incredibly warm-hearted realistic paintings. As I studied art at UCLA and became an Expressionist painter, I grew to reject Rockwell’s idyllic utopia as sugarcoated and corny.  I’ve come full circle with Rockwell, and now can truly appreciate his extraordinary talent as an illustrator, especially as I now know more about Rockwell’s life.  He grew up in a silent, working class family in New York City, married three times, and struggled with depression.  A telling quote of his was that he painted his happiness but did not live it.  Not that I am trying to celebrate the woes of those who famously appear happy, I merely appreciate knowing that not even Norman Rockwell had the Norman Rockwell fantasy holiday season.

We are all fraught with unfair expectations that every holiday season must be the perfect embodiment of familial bliss. As soon as Halloween is over we brace ourselves for the marketing onslaught in stores and on inundating us with endlessly perfect present suggestions and spectacularly decorated homes, trees and stunning meals. It seems every year the goal gets higher, more expensive and sadly more elusive.  But perhaps we can all jump off the holiday hamster wheel if we simply re-adjust and redefine our values.  Find the gift that isn’t the mall. Look deeper at the act of giving.

For Phillip, the best presents are silent, handmade gestures from the heart.  The best gift I can give my beloved brother is myself; I design the needlepoints he stitches.  Our gift to each other is how we communicate via our creative collaborations.  His endless gift to me is to treasure the present moment. Perhaps determining how best to give of ourselves can be the most rewarding New Year’s Resolution we can make.

Taylor’s Autism Speaks Blog

November 10, 2011 3 comments

In early November, 2011, Dad and I loaded a large painting I’d created for Autism Speaks into our minivan and drove the 1100 miles from Missouri to New York City to present it to them.  Because the painting was so big, it probably took me longer to complete it than any other painting I’ve ever done.  In the middle of the painting is the blue puzzle piece that is the symbol for Autism Speaks.  The overland around the puzzle piece is the color complement of blue, variations of the color orange.  Small hearts are lined up throughout the painting; in the orange area the hearts are warm colors; red, orange, and yellow; in the puzzle piece, the hearts are cool colors; green, purple, and blue.  The hearts are intended to depict the feelings that people with autism have that many people don’t realize they possess.  They also symbolize the love and care that parents, teachers, and other mentors give people with autism.

I presented this painting in a small conference room in the Autism Speaks offices.  Just as you wrap presents up for birthdays and holidays so whoever it’s for can’t see what it is until it’s time, I put a big cloth over the painting as we brought it in so I could “reveal” what it was when I got there.  It was to be hung in that same room, and I understand that in honor of that painting, they renamed it the “Taylor Crowe Conference Room.”  I was videotaped unveiling the painting and talking about it.  A few short hours later, an editor at Autism Speaks put that footage on the web for people on the internet to enjoy.

Although I’ve had my driver’s license for 13 years, because of my autism it has taken longer for me to master the art of driving than most people, so I still sometimes need parental supervision when I drive.  I continually get better and better.  On this trip I got lots of highway driving in, but I also felt I needed experience driving in New York City, so I drove with dad supervising!  It wasn’t so much dangerous as it was slow; it took forever just to get in and out of one street!  Although I needed the experience and Dad said I did great, I never wanna drive in New York City again, it’s just too nerve-wracking!  I was always told that defensive driving is hard with autism because those of us with autism expect other drivers to follow the rules, but drivers in Manhattan don’t drive defensively, either!  They drive offensively!

Former NBC head Bob Wright founded Autism Speaks after his retirement circa 2005 to spread hope and seek help for his grandson who had recently received an autism diagnosis.  Wright and wife Suzanne are very committed to helping their grandson and future generations of autistic children.  I did not see the Wrights on the trip when I delivered the painting, but I did meet them in April, 2010.  On that trip I was involved in a dinner with retired basketball stars from the NBA, including my cousin who played for the Knicks, Bill Bradley.  I got to introduce him when he spoke that evening.  Since Bradley and Wright know each other and both have relatives with autism, that evening was very important to them.  I was quite proud to be there.

In Their Own Words – I’m Moving Out

November 4, 2011 28 comments

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism.

You can download the Family Services Sibling Support Tool Kit here

I am moving out. It is finally happening. Not like all of my other stints away. In this move, I will transition to the start of the rest of my life. Yikes. Don’t get me wrong, I have lived away before. But I always returned home, back to the nest.

I went away for college, but came home. I spent a period of time in Ireland, but came home. Oh yes and I lived down under in Australia, not once, but twice. Then I did the gypsy thing in New York City, bouncing from sublease to sublease. Again though, I came home.

Ever since Jeff moved into his group home, he has been on my oldest brother Tommy and me to move out as well. He moved, why haven’t we?

Believe me, the irony is not lost on us.

Growing up, the extent of our family’s travel was a 3-hour car ride out east. Professionals advised my parents against having my brother Jeff travel via airplane because of his sensory issues. So we just never did. It was fine. Our family vacations have always been wonderful, just different. It is the way it is.

My parents, bless them, have encouraged Tommy and I to go and see the world. They financed each and every trip and encouraged us to live each experience to the fullest. Believe me, I did, drinking in every moment, but something was always missing. Jeff.

Autism has always been a part of me. I don’t want to be dramatic, but I can literally trace every single decision back to autism in some way. I never thought anything of it. We come from a small town where everyone knows us and looks out for Jeff. During my times away, I wasn’t Jeff’s sister, I was just Alison. No amount of explaining Jeff can do him justice. He is so much more than just words, he is my heart. Majority of my post-high school friends have an unclear picture of my brother.

I have lived my life, often times to extremes. Nothing is ever really mundane and the pendulum swings. Returning home always brings me back to center, to a balance.

Osho (2006), a professor of philosophy and guru, takes the approach of Lao Tzu, “Balance is something that comes out of experiencing all the dimensions of life. Balance is something that happens […] Balance has tremendous beauty and grace.”Jeffrey navigates through life in a beautiful and graceful way. He is inspiring. Jeffrey shows me true beauty and he really is my grace.

But rather than get on my enlightened urbanite horse, I will quote Hoddington Carter that says more than any blog I can ever write. Carter says, “There are two lasting bequests we can give our children: one is roots, the other is wings.”

My parents have given me my wings. They have given me the tools to be successful, but more importantly the love and support to forge my own path. They have shown me how to treat people and how to live a full life through their stellar example. I hope they know that I carry them with me everywhere and just how grateful I am.

But it is Jeffrey that has given me roots. For I know every time I head home to visit, I will cater to his every need. He will continue to point out every imperfection on my face and I will continue to dance or sing to him on cue. No matter what I may deem important or value in a materialistic sense will all be left at the door.

Because if there is one thing I have learned about autism, is that it strips you down. Jeffrey doesn’t care about the fluff: what cool event I went to or fabulous article of clothing I just acquired. He just wants his sister. And his sister, I will always be.

Look out New York City!

Jeff posing with some custom artwork for my new place

Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

Osho. (2006). The book of understanding. (p. 26). New York: Crown Publishing. Retrieved from http://ow.ly/7jbxm

In Their Own Words – My Neurotypical Costume

October 31, 2011 7 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

“I want friend like me.” – Frankenstein’s Monster, The Bride of Frankenstein

Most people enjoy taking one day out of the year to don a convincing mask or costume.    Halloween has always been my favorite holiday, not because I enjoy disguising my true identity, but because I get so tired of it.  October 31st is the one day of every year when no one expects me to pretend to be normal.

As a child, I divided each year into two categories – Halloween, and the 364 boring days. “Scotty boy, why are you still awake?” my mother would ask.  “It’s after midnight.  I knew you shouldn’t have eaten all that candy.  Halloween is over.  Get in bed.”

“I’m planning my costume for next year.  I’ll go to sleep when I’m finished.”

I’ve always been intrigued by the macabre, the supernatural, and things that go bump in the night.  I identify with the misunderstood outsiders (a.k.a. the villains).  The Wizard of Oz always made me cry – that poor witch!  She didn’t ask to be green and ugly.  Is it a crime?  Ask Kermit the Frog – “it’s not easy being green.”

At eight years-old, I became obsessed with Universal Horror Films of the 1930s; Frankenstein; The Wolfman; Dracula; The Mummy; The Invisible Man. These “monsters” were my friends and allies.  They too were mislabeled, misunderstood, and mistreated, and their stories helped me to feel less alone.

In sixth grade, I saved up my money and bought a very realistic, rubber Frankenstein mask.  I wore it to school on Halloween day and was teased relentlessly.  It probably didn’t help matters that the mask was entirely too big for me – I could barely see out of it and kept running into walls.

The next year, my parents helped me to throw a massive Halloween party.  My entire class was invited, and my mom made sure it was the kind of party that no seventh grader would want to miss.  I dressed up as Groucho Marx.  About a hundred costumed seventh graders were gathered around watching the infamous shower scene in Alfred Hitchcock’s Psycho, when I dropped a fake body off the balcony and into the crowd!  That year was much more fun – serves the bullies right!

As I grew older and began yearning for the acceptance of my peers, I learned to hide my autistic quirks and blend in with the crowd.  It wasn’t easy, but I became very good at wearing a neurotypical disguise.  Abercrombie and Fitch?  Check.  Hair gel?  Check. Lack of interest in anything besides cars, beer and girls?  Well, it couldn’t hurt to pretend I was interested in those things.  Then I just peppered my language with sarcasm, curse words and inane remarks – voila, a neurtotypical teenager!

Pretending to be normal was exhausting, but there was always Halloween.  I still get excited when the leaves turn and the air bites.  By now, I’ve learned to stop pretending.  I accept myself for who I am.  The torch wielding villagers get annoying, but I don’t let them put a damper on my spirits.

Now that I have some autistic friends, I understand myself.  I love who I am, and if others are alarmed by my eccentricities, so be it!  It’s not easy being green, but I’ve learned to love every minute of it.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – The Big Dance

October 27, 2011 18 comments
It was a random phone conversation of no significance. She mentioned the big dance at a local boy’s school: the first big dance of the year.

I didn’t know about the dance. I listened to who was going, names of kids I knew and some, some only vaguely. “It’s a pretty big deal, it kicks off the social for the whole school year. You remember how it was about the first dance.”I smile to myself. Yes, I remember.

A couple of names were presented as not going. I suggest they are only freshman. Maybe they are just not emotionally ready. “No,” she responds. “They really should go. They meet other kids. Those social connections are important.”

Though Sam is the same age as most of the kids named, he isn’t going. He has never gone. But I don’t say those words out loud. The obvious reason is that he doesn’t go to the school and boys outside the school are not invited.

But that isn’t the only reason of course. Quite unexpectedly I feel a brief waive of nausea. I want to stop listening but I don’t. I realize I have stopped breathing for a moment.

It’s just a dance, I remind myself. Just a dance with teenage kids.

But neatly tucked away are my youthful memories of The First Dance. All the excitement; the emotional roller coaster ride of adolescence - the delight, the terror, crushes and heartbreak; the tentative steps into a more adult world of emotion. That right of passage that most of us experience.

I want Sam to experience that. But he likely can’t. He likely won’t. Why does this particular milestone catch me by surprise? I don’t want to care. But I do.

I keep the conversation moving and ask a mindless question. This time convincing myself, it’s just a dance. Just a dance.

As I hang up the phone and walk to the kitchen, Sam is playing music. We dance with abandon as we often do. And though it isn’t the same; or even close, I hear his laughter as we twirl. I find myself smiling and realize, it will do.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

MSTFNSH…..Huh?

October 11, 2011 18 comments

Glen Finland is the author of Next Stop: A Son with Autism Grows Up, due out from AmyEinhornBooks/Putnam in April 2012.  www.glenfinland.com

MSTFNSH. At first it was a mystery to me, but that’s what the vanity license plate reads in the middle of the eight bumper stickers on the back of my autistic adult son’s little Toyota.  He’s 24 and he’s been driving himself to work for nearly two years now, pulling trash at county parks for minimum wage.  There’ve been two tickets for going ten miles over the speed limit, but other than a broken rearview mirror and the unexplained yellow paint on the side of his gray car, no crazy-making incidents.  I tell myself to just breathe.

And all those bumper stickers?  They consist of eight different ways to say “26.2 miles,” “Your punishment is my sport,” and simply “Runner!”  Because the countdown is now on. My boy David is running every night after work, in the dark and alone, rain or clear skies, training like a true athlete these days because he’s just a month away from making his dream come true.  It’s not his first marathon.  It’s his third and you better believe he’s competitive, having completed the Marine Corps Marathon in a swift 3:52.

Get ready, I’m gonna brag here and you can’t stop me: On November 6th of this year, David will run the New York City Marathon.  He will run for Team Achilles International, a group of disabled athletes founded and championed by New York distance runner Dick Traum who knows what it means to be a different sort of human being.  Forty years ago Dick lost his right leg in a crushing car accident when he stopped to fill up his car. Today he says that “Empowerment is what Achilles is all about. We don’t work with magic spells. We just go out and run, and in doing that, we discover that we do not have to sit quietly at home and dwell on our disabilities.” But he also knows that “every time human beings realize more of their potential, all of society benefits.”

But hold the pity fest.  The runners in this club don’t care to hear it.  In fact, they represent the sturdiest of us all: there’s an 80-year old nun, a landmine survivor from Grozny, Chechnya, a Cuban burn victim, a blind runner, a struggling to quit drug abuser, victims of traumatic brain injuries, and a platoon’s worth of U.S. veterans—Wounded Warriors who will attack the course on November 6th in their wheelchair racers or on prosthetic limbs or crutches.  I’m telling you, you’ve got to see it to appreciate the strength of character and force of nature that make every one of these athletes fit to run.  And now my David is one of them.

One more thing.  I finally figured out what the cryptic vanity plate means on the back of my son’s banged up Toyota.  MSTFNSH = M-U-S-T  F-I-N-I-S-H.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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