This is a normal morning for one dad and his boy.
Today I had the honor of being the keynote speaker at a social service agency’s annual breakfast in honor of direct service providers for the elderly and children and adults with disabilities.
It is possible to do something for others while doing something for yourself. In fact, I would argue that the most effective folks in positions to support others should be doing this work, at least partially, for selfish reasons. The pride and quality that goes along with a proper combination of selfless and selfish motivations is frankly preferable to people who truly believe they are doing this work “for those poor disabled folks.”
I believe that when you can admit you are doing this kind of work at least partially for yourself, you are acknowledging that your client is offering you something of essential value in the relationship; That they are a whole person and a peer in the relationship. That it isn’t a one-way street.
Sort of like all friendships should be.
If you are interested, ask me about my Breaking Bad analogy.
And thanks again to all of the direct service providers who have helped, and continue to help, my family.
Today, the Parents.com blog To The Max reprinted an essay from my book called Helicopter Parent. It isn’t what you may think it is about.
It’s really about helicopters. Okay, and children (and fathers) too.
“I made a phone call to the press relations contact at the Sikorsky company and asked if there was someone who could help me get some special materials for my son’s project. I told the press person about Alexander, his love of helicopters, a bit about his challenges, and what we were trying to do.
Less than a day later, I received an e-mail from Elena Sikorsky, wife of Sergei Sikorsky, Igor’s son (Igor died in 1972). She let me know that Sergei would send Alexander a package with helicopter-related stuff. Soon, we received a package with a selection of trinkets and keepsakes from Sergei’s attendance at an airshow in Europe as well as a copy of Sergei’s biography about his father. The book was autographed for Alexander and had a hand drawing of a helicopter in the inscription.
Alexander and his mother and I worked with him using large letters and pictures in a three-ring binder to remember some sentences for his presentation. We practiced getting dressed in the Igor Sikorsky suit and hat. And drawing on a mustache. All very challenging things due to sensory issues. But we practiced and had a lot of fun and he really liked it.”
Happy Father’s Day!
Review of the book on Huffington Post (UK Edition).
Thanks to Jo Worgan for a thoughtful review.
As of today, I have “two, two, two!” pieces I wrote on the front page of the main United States Easter Seals web page.
The first is a piece I wrote called 12 steps to find a good caregiver. The second piece is called 6 gift ideas for dads with kids who have disabilities. The second piece is NOT what you think it is. You should read it.
Sometimes the best father’s day gifts from a child are unintended. Small. Even seemingly insignificant to the wrong audience.
A few weeks back, I received an amazing father’s day gift from the son of my girlfriend in how he stepped up to something he sensed. I recount this story in a guest post on the Family Caregiver Blog.
An essay of mine is appearing on the national Easter Seals website. The essay, Finding a Caregiver for a Child with Special Needs, previously appeared on the Love That Max blog and permission was graciously granted by Ellen Seidman to reprint.
Check it out! The essay is live now, being promoted on the Easter Seals eNewsletter, and will be linked to the Easter Seals home page in a short while.
Here is a 30 minute Father’s Day radio interview with Marianne Russo of The Coffee Klatch / Special Needs radio with yours truly.
It is really an interesting interview. Thanks Marianne!
Thanks, and Happy Father’s Day!
(Originally posted June 15, 2014)
The backstory: Last year, I read Jeff Howe’s Money article Paying for Finn. It was quite a co-incidence that I picked up this issue at all, as it was the last paper issue of Money magazine mailed to me and I was so sick of being broke that I decided that I was done subscribing to mags for a while. And I was so busy, having kicked off my Dads of Disability project (I was in the thick of the animation for the crowdfunding), that I was cutting back on a lot of things.
I thought Jeff’s article was pretty good, so I started to Google him. The comments I found about Jeff and his article really upset me deeply. There were some horrible things being said about this guy that I couldn’t really believe were true. So, I actually called Jeff, and he actually answered my call. (Apparently working writers and professors are just like the rest of us, they even have day jobs and phones and stuff). We chatted, commiserated, and eventually met. (Jeff and his wife and children were gracious enough to have me over one morning for a quick visit).
He wrote a draft of an essay that eventually became the essay “The Measure of Grief” in my Dads of Disability collection. And this is the piece that was adapted into “The Language of Autism” that the New York Times Motherlode piece published yesterday. Jeff and KJ Dell’Antonia deftly shortened and adapted the piece from the longer version in my book.
(By the way, my book isn’t specifically about autism. The core disability issues and challenges in the book are wide ranging.)
The lessons: I think I have another book in me about the lessons I have learned since working with Jeff and over 3 dozen other essayists and poets around the world. So, in the up-to-date parlance of web content marketing, let me share a few of them in numbered list form.
- Stereotypes abound: A certain sub-segment of the radical disability community can sometimes stereotype and be scornful of other folks who are the very folks whose minds they are hoping to change. I accept this irony and try accept folks who write and advocate like this as an essential part of the mix; They are a group of people I need to learn from but who I don’t always have to agree with. Actually, this is a good lesson for society at large, not just for disability issues.
- Language and words evolve: Words are important, but people are more important. If I see a parent in pain or a young or adult child of that parent in pain, I have learned to focus less on how they are saying what they are saying and more on understanding if there is some way I can learn from them or help them. As I said in the introduction to my book, “And if there is unintentional offense, please let it start or continue a dialog, not end one.”
- Gender impact: There are gender differences in reaction to being a parent of a child with a disability. Yes, there are many things that parents of young and adult children experience that are common. But gender and cultural differences in reaction to disability abound. My book begins to address them indirectly through the words of a variety of fathers and mothers writing about fathers. But boy, this is a big topic.
- Experts disagree: This isn’t just about Autism, this is about disability in general. For every white there is a black. For every up there is a down. And every shade of grey and every altitude in-between. It is extraordinarily hard for a parent of a child with a disability to navigate social systems, medical systems, school systems, not to mention the plethora of fact and opinion on the Internet. It really is a lot harder to learn how to parent a child with an atypical challenge then it is to parent a child who is developing more typically.
- GATTACA could be coming, and nobody seems to be ready for it. I had the privilege of being invited to the 2014 GET conference in Cambridge, MA a few weeks ago. The speed with which genetic technologies and information is available is increasing at tremendous rate. If you think that regulation and ethics around the rise of the Internet aren’t keeping up with the technology, just wait to see what happens with genetic technologies in the next few years. The choice about terminating a pregnancy of an “abnormal” (I hate that word too) fetus — that’s just the beginning.
- Going broke, but saving a life: Speaking of money, if you write a book that gets some decent reviews, far too many people think you are getting rich off of it. Trust me, both the hard and opportunity costs of collecting, publishing, and promoting this collection of essays and poems over the past two years has me in some debt. It is different being a marketing person for your own project with your own money than doing it for a VC funded firm! But it was totally worth it. The book already literally saved a life. (I’ll write more about that another time.)
Best to all, and if you know a reviewer at a major publication that has my book on their “to do” pile (you know who you are), please poke them in the ribs for me. Or if a reviewer wants a copy, visit http://dadsofdisability.com/reviewkit
An adaptation of Jeff Howe’s essay from my book just appeared on the New York Times Motherlode blog. More on this from me tomorrow, May 15, 2014 (here is the link). Which is one year to the day after I first posted Defending Finn’s Dad.
The Language of Autism: Disease or Difference? http://t.co/ni4vALsAos
— The Motherlode (@NYTMotherlode) May 14, 2014