Why Specialists Should Support Dads of Disability

Hello and I hope your summer is going well,

I’ve asked my friends and supporters to send you to this page to learn about the Dads of Disability project and consider supporting it or participating in it.

When I visit the offices of many of  his educators and medical and support specialists — I see a stack of academic and professional and mainstream press books about children and families.  But rarely do I see one specifically about fathers and children with disabilities (except a few in the style of the heroic stories like the Hoyts.)  I am trying to change that by writing a book called Dads of Disability:  Stories for, by, and about fathers of children that experience disability (and the mothers that love them)

I have a request and an opportunity for you or your your staff and professional network:

1. Please back this project as soon as possible through my Kickstarter at this address. If you don’t know what a Kickstarter is I have info here.  This isn’t a donation or charity – rewards are received for early backing of the project and such as copies of the book and other project related content.

kickstarter-logo-light

I am specifically asking you to back the project for $119 – in return for which you will get the reward of  nine paper copies of the book for you and your friends or staff when it ships in March 2014. 

If that is too much, other rewards range from the ebook for $9 to other book-related content from $19 and up. I ask that you can either personally back this project or back it through professional development or content funds and can account for this backing as a “book pre-order” (the book will ship in March 2014) for your personal or staff development library. (Your credit card will only be charged by my the Kickstarter project through Amazon if the entire funding goal is met by August 9th.)

2. Please learn more about this project at www.dadsofdisability.com and let Dads or Moms or staff you may know that I am seeking contributing parent, student, and educational professional essayists and I am paying stipends for those that appear in the book.

Quill Pen, Creative Commons 0 license

Even if you don’t back the project, please look at the site for a COOL animation done by a high school senior. Or consider forwarding this note to other educators or sharing it on FB and other social media regarding both writing and backing.

If you have any questions please contact me at gdietz@garydietz.com. Thanks for all you do for our children and families!

Gary Dietz

Kickstarter Update #1 – Also, welcome to GMP and NSGC folks!

Hello everyone,

I’ve posted my first Kickstarter update, after the project was live only 1.5 days.  Here is the link to that update, and the full post is reproduced below.

Also, 266 Facebook shares so far. Wow!

Thanks to all,

Gary

—–

Dateline: Suburban New Hampshire.  10-Jul-2013. 6:30am EST.
Subject: Dads of Disability Kickstarter Project – Humbled and Excited!

1.5 days into the Kickstarter, 12% of the funding goal has been reached, with over $1,800 in pledges by 37 backers!  That’s a $49 average pledge per backer! A to-date high of $351 by one backer and a wonderful number of $9 pledges.

This wonderful status, with only personal 1:1 outreaches to less than 20% of my personal contacts through Facebook and LinkedIn and a small number of organizational outreaches.  Lots of screen time and typing in these next few days!

Although my eyes ache and my fingers are bleeding, I offer major thanks to my early backers!

What’s next, what’s new?

A new reward! I have added a new, limited reward at the $299 level – A discussion webinar hosted by me for up to 10 folks in your organization.  I will blog about the webinar. Or, if it is an exceptionally amazing discussion, will include a summary of its stories as an essay in the published book.  If you want, I will include your organization’s or team’s credits/website!

For those of you who don’t know my collaboration and videoconferencing background, I host amazing webinars!  No “Death by Powerpoint” on my watch! Interactivity rules.

Press and Outreach!
a) I was interviewed by the Poughkeepsie Journal (New York) yesterday about the cool story of me and my animator, Casey Silvestri.  We graduated the same high school in New York 30 years apart! I’ll let you know when the story appears.

b) If you are a press person, or want to help me reach out to press folks, you can access my press backgrounder here and media snippets for web and print here.

c) Today at 8:30am EST, an essay by me will appear in the Good Men Project.  I don’t have the URL for the article yes, but it will be in rotation on the front page.

d) Today at 8:30am EST, an email will be going out to the membership of the National Society of Genetic Counselors.  A fine welcome to that organization’s folks.  They are of a big help to families like mine and I welcome their support and backing!

Again, a sincere thank you for your support – and a special shout out to those who have increased their backing after their initial support!  Wow!

Wow, it’s only been 1.5 days!  I will work hard to reflect your belief in me.

Warm regards to all.

Gary

 

The Kickstarter is live. Back! Write! Share!

The Kickstarter for the Dads of Disability book project is live! Click on the image below to check it out. If you do nothing else, enjoy the animation! The Kickstarter page tells you a lot about the project, but you can also click on the menus above on this page to learn more.

I’m asking for three things.  Each of which has a benefit to you or your family or clients.

One: Back the Dads of Disability Kickstarter!
How does this benefit you?  Backing starts at just $9.00 and at this level the reward is an electronic version of the book when it is released. $19 gets you the paper copy AND the electronic copy. This isn’t charity, rewards come with backing!  Higher value rewards include original framed art from the animation and a 60 second animation of your family!

Two: Write for this collection, get paid
Yes, I will pay you.  I am paying small stipends for authors whose work (or interviewees whose story) makes it into the collection. Learn more about that in the submission guidelines.

Three: Please share this project far and wide!
For suggestions and materials if you feel like sharing on social networks, please see the open letter from me.  Tweet with hashtag #dadsofdis  I am @garymdietz on Twitter.

Thanks for all of your support!!!

Gary

Why am I writing a book?

Hi,

I am writing a book because I am a dad whose legacy to his son isn’t going to be anything like it I thought it would be before he was born.

Because I’ve learned so much from other fathers and I don’t want their sage advice to dissipate.

Because my son is a whole person. A young man with humor and likes and desires. Who deserves to have other folks see the world through his eyes even though he may not be able to  always express what he sees.

Because society, for too long, has valued different as less instead of looking at it as just different.  Or even more.

From day one, advice to folks like me has been write about what you know. And my experiences these almost 14 years is a lense through which I want to help other fathers, other mothers, other members of society focus through–even if they can see a father’s perspective only for a moment.

newyorkcity

A moment of empathy and understanding is my goal. A moment of teaching and learning. A door to a discussion that may not have otherwise taken place.

I’m writing a book about father’s and men’s perspectives because the best legacy I can leave for my son is a way to help others understand and learn how to help him illustrate his value to the world. A small contribution so that when I am gone, someone else can look him in the eye and see them twinkle and love and respect him as a whole person. And ask him how his day went and really listen. Just like his Dad.

Please poke around my site.  And let me know if you want to contribute an essay.

Thanks,

Gary Dietz

 

 

 

 

An unusual one year anniversary

Hi,

Today, my son now age 13, has been at a residential school for exactly 1 year. Here is a video of his end-of-year academic award. Check out that proud smile at 0:33 !!!

2013 ceremony video

Click image to launch MP4 video of the ceremony (0m 45s long)

Two great things for those not familiar (1) He was able to handle the noise and clapping of the ceremony for a good 1/2 hour and (2) He went up to accept his award by himself (with some coaching). I have a ton of reflections both challenging and joyous. I just ask for your continued support of him and me.

Best,

Gary

P.S. Although I appreciate the good intentions, when people tell me “just think about it like he went to college early,” I want to…  well, let’s just say its an unhelpful analogy.

P.P.S The Kickstarter should be live around July 8. I hope you check it out, if only for the cool animated video.

 

Throw away your ‘depends’

Hi,

This post is a response to a post by Vicki Davis, the Cool Cat Teacher.  I met Vicki while I was a Product Manager at Elluminate and have followed her career with much admiration.

Vicki’s theme doesn’t depend
Vicki’s post explores the philosophy of not allowing external influences to affect your attitude toward life.  Not to allow your attitude to “depend” on anything. Although her context is that of a teacher, it’s really important for anyone at any stage or place in life and career.  In fact, without naming names, the most successful folks I know have this amazing duck-like ability to let anything just roll off them; Their success doesn’t ‘depend’ on too many external forces. In my response I am adding an additional, related theme of ‘self-doubt’ to Vicki’s ‘depends.’

A secret
I have a secret that many successful folks I have had the pleasure of meeting let me in on.  Perhaps you know this secret too, but haven’t let it sink in.  Here it is: Even those folks we idolize — the ones who give the speeches, found the companies, win the awards, scream at us with motivation at the gym — those folks have crappy days and feel inadequate and probably have their ‘depends’ moments too.  But ultimately those that succeed / feel ‘actualized’ / get closer to God / move even one small step to becoming a better self — this success still doesn’t ‘depend.’  You either do, or do not (as Yoda would say).

An insightful fashion model
Even ‘perfect’ people have their ‘depends’ moments and self-doubts. Watch fashion model Cameron Russell’s Ted Talk. It’s a slightly different context and different take – but at the core, it shows that we all have questions about ourselves and our abilities or worth.  Success (however you define it) ultimately doesn’t ‘depend.’  Privately, ask a successful mentor how many times a week they feel inadequate.  Ask someone successful in your space how many times they failed before they succeeded.  Ask an entrepreneur how many times they have been completely broke but kept on going.

Personally…
Ask me how proud of my son I am that he had a weekend away from his residential school with me where, for the first time in months, he didn’t pinch me once.  Do you think I am comparing that to another parent’s experiences with their typically developing child’s wins?  Does my pride in my son ‘depend’ on external conditions and events completely irrelevant to our situation? Do I doubt my parenting and love because of the situation we experience?

Thanks Vicki, you are a cool cat indeed!
Vicki, thanks for showing me that  even a busy mother and teacher can impact so many so positively without allowing ‘depends’ to get in the way.  Thanks for motivating and teaching so many teachers.  You are an inspiration.

Best to all,

Gary

SHAMELESS PLUG NEXT. SKIP IF YOU DON’T LIKE SHAMELESS PLUGS.

Friends and fans of Vicki at schools – If you know any father’s of children with disabilities, please tell them about my Dads of Disabilities project on your Twitter (I am @garymdietz) and Facebook feeds and send them to the Submissions pages.  There are stipends for authors that get into the collection!

A frame from the Kickstarter animation

A frame from the Kickstarter animation for my Dads of Disability Book Project

I am seeking stories about all fathers of children with disabilities, but especially seeking fathers of color, fathers of children with physical but not intellectual challenges, and female and male supporters of fathers who want to write about them. And the Kickstarter for this project starts right after the 4-July U.S. holiday!

Violence against kids. One witnessed by me. What can we do?

Hi,

I don’t want to editorialize too much in this post, so I’ll just list some things that have hit me hard in the past few weeks. And, in some sort of ironic punishment, came full circle right in front of my face on 17-June 2013 when I witnessed a vicious child-on-disabled-child act of violence (jump to #5 below).

So, here is the list of things that have haunted me this week, sans (much) editorial comment:

1. Alex Spourdalakis  Just Google his name.  A horrible murder that is not about a lack of services (though that is a dire issue in the world).  There are so many vectors of discussion, shame, and anger — other discussion threads have addressed them. I just want more people to read about Alex.

2. Ethan Saylor Just Google his name or read this Op Ed by his sister, Emma Saylor. A horrible murder that just the simplest compassion or training could have prevented. (Ed. I realize that Ethan was not a child.  But he was someone’s child.)

Ethan Saylor 300x230

3. The continued use of electric shock for punishment and training at the Judge Rotenberg Center (JRC) in Massachusetts.  This is 2013, isn’t it?

4. The short film Restraint and Seclusion, Hear Our Stories by Dan Habib, New Hampshire Auteur.  Worth a watch.  I repeat, this is 2013, isn’t it?

Restraint and Seclusion: Hear Our Stories  from Dan Habib on Vimeo

5. A vicious beating I witnessed myself

I witnessed a young child (perhaps age 9) viciously beating an older, larger child (perhaps age 13) with a stick, with about 4 or 5 other children looking on.  The 13 year old had some type of intellectual or emotional challenge, I don’t know what (I assume something like or actually Autism, I don’t know).  After I broke up the violence and asked the 13 year old if he was OK (he seemed unharmed physically), I followed the perpetrator home and chatted calmly (yes, it was calmly) with his folks who weren’t always so calm.  Some points here:

  1. I absolutely should have stayed with the victim, brought him home, and called the police.  I am angry at myself for not doing that
  2. The perpetrators family was shocked and I was told by the mother that the child himself obviously had problems. It shouldn’t have to have been me having this discussion.
  3. What a dope I was not to stay with the victim and to heck with the perpetrator!  I should know better! I feel shame.

So, the next day, wracked with guilt and concern about my mishandling, I went to the police in that town to file a report.  They were polite, but the officer:

  1. Didn’t write down more than 12 words on a small piece of paper
  2. Said “we aren’t in the habit of arresting 9 year olds” even after I had previously told her a few times I was hoping that she could go to the parents of the perpetrator to (1) query the kids friends and locate the victim to inform the parents and see if all was OK and (2) To make sure that the 9 year old aggressor had some access to services (this wasn’t a fight – it was a beating!)
  3. Didn’t have me sign a police report or even sit down in a private place to talk.  Though they were very interested in my name, my date of birth, phone and address
  4. Told me all she could do was inform the “school officer” (this took place next to, but not on, school grounds after hours) and let them try to identify the victim.

I did in fact make a mistake not calling the police initially.  However, I am quite sure the officer was giving me lip service.  This was NOT in my town, but it was in a mid-sized New Hampshire town.

Yet, I remain an optimist.  The world is filled with so many good folks, I have to keep reminding myself!

Take care,

Gary