Austintistic- January 17th, 2012 Blog Post -Kudos, Deserved
Thank you to Scott for such kind words in his latest blog titled Kudos, Deserved
Kudos, Deserved
After some much needed time away from the keyboard I try tonight to knock off the rust and get back to sharing the backlog of stories I have for my follow-up effort. Over the last two months I have focused my efforts on finishing my book proposal and all the other things that go into making a book so you one day can get the actual product in your local bookstore or on your Kindle, Nook or iPad. Little did I know as I spent time sharing these stories what would happen as I pounded out these moments residing in my heart and on my brain…
Writing a book is easy. I jest a bit, but truth be told, it is. Well, it was at least the actual writing part. Over the last several months I have been putting together the package- proposal (kind of like a business plan), the appropriate documents and letters. All to secure representation and ultimately put it all together to be sold to a major publishing label in New York. This has all taken what seems like almost as much time as the writing, but for sure it has been the much more frustrating and challenging part.
Of course the writing, putting the stories together and choosing what I want to blog about and share is not easy. But it was challenging and invigorating. I found out something I knew nothing of- that I really enjoy writing and why I continue to blog and write the second part of Austintistic.
The name has changed. Many people want to know how it is going. What’s the status and when can I buy it. And now I know something… it takes a long time to get from A to Z when you sit down to write a book. All I can tell you right now is that I hope we can see it in stores this year sometime and hopefully sooner than later. And a lot of that depends on how able and strong a package I have put together for the folks who want the privilege of taking my “baby” and bringing it to market. And I do believe that. I see my stories as ones that people want and maybe even need to read, therefore, I want the best person and publishing house that will take it and run with it and help me make it a winner. And for me the definition of success will be the number of people I can touch, advocate for and even educate. The better my book does, the more I can advocate.
I had no true idea what I was getting into four years ago as I started to jot down little snippets of incidents and events our family had been through over the years. I suppose I was starting a diary in my mind that would possibly be therapeutic for me. The stress, frustration and challenges we faced had been in our face from day one and what better a way to deal with them than write them down and relive them. Tough times and good times.
So I did.
And a slow burn ensued. I wrote the notes down and added them to a spiral I kept in my bag. But nothing earth-shattering or enlightening happened until the day Austin broke his leg the same day he has just gotten a cast off of his right arm. The day my brother Kevin asked me if I ever thought our luck was something real or were we being repaid for something. He asked me if I had ever thought of putting more into it and telling people about it. You know… truth being often-times stranger than fiction. But I didn’t really get rolling. I put more notes in the book. But more than anything I was really just cataloging my thoughts. For what, I was not sure. And then I read a random blog. I don’t even recall what it was about. But it got me thinking. So I learned about blogs. Once that happened it all came crashing together and has led me to where we are today.
What I was not prepared for was the effect it, the whole journey, has and continues to have on me. Over the past two years I haven’t given much time or thought as to what this path has done for my mind let alone soul. Only now am I really starting to comprehend and understand how this process has touched me. Just as it has done that something else has happened… people have touched me. I have new friends and relationships. I have learned. I have grown. I have stumbled and I have persevered. Something has happened and it is profound.
In the end and today as I sit here tapping away in my hotel room what I am thinking about are all the people whom have touched my life over the last few years. To date all but a couple of posts have been about specific moments in time. They were stories of me, Austin Logan, Teresa…our family. But before I get my next story (I have about 15-20) ready to go I wanted to share with you some of the people who have stepped into my life. Some have come crashing in as you will see and others have kind of slipped in the side door. But these are all people I am sure you would all love to know.
My blog is not about products, services or offers, and it will continue to be just that. However, over the past six months I have gotten countless offers to review a book, screen a documentary or movie, check out some diet-specific products or even join in a political cause for special needs. And I have hesitated and rejected them all. But I can’t deny and ignore them any longer so I want to share some of them and as you will see they are not about selling anything. They may have a book a movie or a product, but what is important is what they have done to me and what impact I see them having on the world, however small the way.
I share with you some fine human beings who have touched my life:
Virginia Hall and Elizabeth Bonker – Virginia (Ginnie) Hall was a venture-capitalist and deal make for years on Wall Street. She lives in New Jersey and now has a wonderful family with three children; two are profoundly affected by autism. One fateful day after some routine immunizations her daughter Elizabeth lost all ability to communicate. At least verbally. Their book I Am In Here is a wonderful story the two of them wrote. The book is written with Ginny’s words and Elizabeth’s poetry.
The makeup of the words and poetry make for a story that is delightful and at times remarkable. She replays some of the stories of dealing with school systems and politics which has touched me too as we currently navigate those waters.
Ginnie has shown me through reading the story and talking with her that we can all learn. I have not really taken a stance and for sure tried to not get controversial on my blog but I learned something from Ginnie. While immunizations may not be the devil or root cause of autism…some kids like Elizabeth I feel may be hyper-sensitive to these types of vaccines which truly look like the causative factor in the change in her daughter.
One part of her book hit me right between the eyes. I will paraphrase, “There are two types of teachers. The first being ones who will generally see special needs children as problems to be endured. The other will see them as treasures waiting to be unearthed.” Amen.
Marc Zimmerman – Marc is a friend and confidante. Marc is the father of twin autistic boys living in Southern California. He was frustrated with the lack of quality tools which met his boy’s needs… so he created his own. The Social Express is an interactive app for autistic youths which is now available on iTunes. Austin has had a great deal of fun navigating the tool.
What has surprised me the most was as a parent it showed me how regardless of the type of autism, social skills are still the hallmark and stumbling block for all affected children. The app is designed to help autistic children navigate all types of social situations in order to better prepare them for life as a contributing member of society. It will help them with the skills needed to create, build and maintain meaningful relationships. It may seem really basic but something as simple as looking someone in the eyes when they talk to you is a skill many autistics struggle with. The app shows you how to work on this and what it means.
The fact that politics and legislation, not to mention ignorance can have a chilling effect on progress and it is people like Marc who are taking charge and making a difference. With a condition like autism being one that often leaves me feeling like I am being dragged behind a car, Marc has turned things upside down and inside out and is in front of that car a leading the way.
Marc has shown me that it is people like him and other parents just like him who will make the difference and progress we so desperately need in the special needs community. He is a difference-maker and I thank him.
Find Marc and The Social Express at: www.thesocialexpress.com
Angie LoSchiavo/FlyPropeller and William Dear/Director – I have never reviewed a movie before. I have had several requests to look at documentaries and books and other things, but this was the first one that caught my eye and made me think. I was asked to pre-screen A Mile In His Shoes… which is a true story about an autistic boy played by Luke Schroder and starring Dean Cain of Superman fame.
The story of Mickey Tusler is about an eighteen year-old boy who is stuck on his farm with an enabling mother and gate-keeping father. All while Mickey has a special gift- he has a rocket for an arm but has yet to touch a baseball. He throws apples into an old bucket as his pet pig looks on and eats up the smashed curve balls out of the troth at the ground.
This is a touching story which subtly shows a couple of very significant things- it showed me something I know all too well: A father who is in full-blown denial and will not release his son to the world for the thought of him being hurt, humiliated or worse and the mother who enabled it all to continue. It shows the young man who learns to stick up to his father, face his fears and learn to be a part of something outside of his farm. All the while it shows the inner struggle Mickey has with making these decisions and the fact that so many unknowns and people just don’t know. They don’t know what autism is and he struggles with this. And Dean Cain plays the part of the small minor-league manager who takes a chance on an unknown only because he is at his wits end and a breath away from being fired. In the process he is enlightened.
Mickey made me think about some of the things I have encountered, endured and grown from. I think all people will like this movie. There is no violence, no sex and no bad language. What a concept. This is a wonderful movie which I hope makes one think.
A Mile In His Shoes premieres on GMT tomorrow. Here is a trailer if you want to take a peak.
Youtube: http://www.youtube.com/watch?v=Ev2T0BFetH4 You may be asked to hit control/click.
Elaine Hall – Vista Del Mar, Vista Inspire Program – I had the privilege of speaking with Elaine a few months ago. She is a double-Emmy award-winning creator of the HBO documentary, Autism: The Musical. She is located in southern Cailifornia with her autistic son who was also featured in the documentary.
Elaine is a person who too is making a difference through her speaking, advocacy and education all over the country.
At the Vista Del Mar School she is part of the VIP- The Vista Inspire Program. This is a school which serves autistic children using music as the vehicle. Included in the VIP are also specific schools catering to Bar/Bat Mitzvah adaptions. They are in the process of adding another religious part of the program as well as a post-Bnai-Mitzvah program.
The school has helped thousands of special children throughout the state of California. To me it looks like a model for communities all over the land and they are blessed to have the interest, funds and hands to make this all possible.
It takes people like Elaine to do what she is doing to make the difference we need in the special needs world.
Barry Switzer – It has been a pleasure getting to know Coach Switzer. Beyond the obvious, football, many people don’t know what makes Barry Switzer who he is. I suppose I don’t know either but I do know something about him- He Gets It. Coach has been a part of the special needs community through the Special Olympics for almost forty years. This is something I am sure he doesn’t make much noise about and also something most people don’t know.
This came as no surprise to me. In all I know of the Coach one thing I have learned is that he has always, always been for the little guy. The struggling student or the needy young athlete trying to get out and off the streets. He has always been a giver.
I will never forget how he responded when I asked him why he did it. And I will paraphrase, “All special kids have the passion and potential. We need to get them out of the house, off the couch and involved. Most of the special kids I know have as much competitive drive and character as the greatest of athletes. We need to get them out of the house and unlock their hidden potential.”
I could write volumes about Coach Switzer but I will leave you with what I know… The Coach Gets It.
Ricky Robinson – She is the co-director of Descanso Medical Center for Development and Learning in La Canada, California. She is a Clinical Professor of Pediatrics at the Keck School Medicine of USC and Senior Attending Physician at Childrens Hospital Los Angeles. She has been in private practice for over thirty years and working with special needs for more than twenty of those years.
Dr. Robinson is a founding board member of Cure Autism Now (now known as AutismSpeaks) and has devoted much of her life to helping children with autism.
I have had the pleasure of getting to know Dr. Robinson and I knew I liked her in the first five minutes as we chatted…she was born an Iowa girl, just up the road in Sioux City.
What I took away and impacted me in our first conversation was something very simple. It was something my friend Angie and I have spoken about at length. It was refreshing to hear her say the same thoughts. They were that she felt all kids should have an IEP (Individualized Education Plan) in our schools. Why shouldn’t we be creating and educating all of our children based on the needs they present? Creating a plan for each and every student to tap into their utmost available potential because every child IS different. Wow.
She enlightened me on her feelings of children and where we are going in the future in terms of education, advocacy and awareness. As connected and influential she may be with the media, the entertainment world and AutismSpeaks she admitted the number one thing we can do is at the community level- educating children, adults, teachers, educators and mentors alike. Getting a grand stage is obviously an important thing but to make meaningful changes it must take grass roots. These were the things we talked of and I couldn’t agree more.
It all begins at home. And again, Amen.
Kerry Magro – Seton Hall Graduate Student (completed undergraduate at Seton Hall- Deans List). 2011 United Nations Youth Representative and USA Today All-College Team. The list is too long to continue, but Kerry is an impressive young man… and he is autistic.
Kerry reached out to me a few months ago after he had become a fan of my blog. He is currently writing his own book about what it takes as an autistic student to survive in the world of college academics.
While finishing his graduate work he also writes a weekly blog for AutismSpeaks and was recently a consultant on the just released, sure-to-be hit movie Joyful Noise starring Dolly Parton and Queen Latifah.
He is active in New Jersey with autism legislation where he routinely speaks to political and academic groups alike.
What Kerry has shown me are the intricate details and often arduous path growing up in a school system which does not “get it” exists. He and his parents were at the forefront of advocating for their son as they broke ground, stepped on toes and took on “the man” in order to make change happen. I am sure I could talk to Kerry for hours about this alone.
I look forward to working with Kerry going forward. We both have some similar goals and our mission is all about the same thing: education and advocacy.
THE SCARY GUY – I write this in all upper-case because that is how he writes and I don’t want to make him mad. Just kidding. Scary, it is his real name, is one of my newest friends and I am proud to introduce him to all of my friends and readers. He is an exceptional human being and is making a difference in our world, every day.
It has always amazed me how the crossroads of life has put certain people in my path over the last four years. Scary is no different. A friend felt this was someone I needed to meet…and it happened.
He talks so much about the “container” we all are. We come in different shapes, sizes and colors…and that’s the way it is supposed to be. When I recently told my good friend Matt about Scary what did he do? He googled him on his iPhone as we spoke. I had not told him anything about Scary, just that I came in touch with this gentleman and I liked very much what he was doing- I liked his mission. And then he said, “Uhmmm. Uh, Scott? What are you doing with this guy? Are you sure you want to have him be a part of what you are doing?” I love my friend Matt, but all he saw was the container.
Scary is all about ridding the world of violence, hatred, and prejudice and bullying. He is all about inclusion, embracing all our differences and a world where we are ALL different and we are killing ourselves over it (because you’re fat, gay, a geek or disabled etc).
Scary is an amazing story and very colorful, duh. Please check out Scary- www.thescaryguy.com and be prepared to look at yourself in the mirror. I love it.
These are just a few of the people who have touched me as I write my books. This post needed to be written. There will be a time and place to thank all the people who are part of my team for the book and I eagerly await that day. Look for my next story in the next week or so. I have it roughed out and just need to finish it.
Until then……… make a difference.
Do you Get It?
