29. April 2014 · Comments Off on The Run-on Sentence Edition · Categories: book status, published elsewhere, sites to visit

With an unbelievable two weeks since the release day of my book, I present to you a run-on sentence of what I’ve been up to.  Yes, this is what it feels like in my head right now. This is “indie marketing.”

Just got back from Maryland for a day trip presenting to the NIH with a guy from the PCPID White House staff in attendance good thing he was a nice guy and I had practiced earlier in the week at Nashua Community College oh my God the poster for the Parenting NH Family Fun Fair  was wrinkled because I used the wrong glue I have to get to Staples and redo it laminated for the Family Support Conference oh I hope I can reuse it for the All Abilities Event and wow, A&E Roastery is actually selling my book with coffee even though they are not a book store and my Love That Max guest post hit a day early better get on Twitter wait…

runon

…I just got a call from Marla at Special Mom’s parenting magazine she needs my questionairre – oh and Mantu Joshi of The Resilient Parent wants to do that podcast with me and jeez I need to get the artwork to go with my sponsorship of the Coffee Klatch Radio and uh-oh I need to start prepping for my Tilton-Northfield Rotary lunch and also the Gateways Supports direct support provider luncheon keynote OMG I am writing speeches for myself not someone else and I need to follow-up with a ton of reviewers and darn I need to relax for my Cool Cat Teacher Every Classroom Matters interview and the Tilton Inn book reception planning…

…Deep Breath.

Oh, and my paying clients need attention too.

Have a great day.

Gary

I’ve occasionally heard some parents of typically developing children (and politicians!) criticize our community with statements about how it isn’t really that different to raise children with disabilities. That we should stop complaining and positioning our children as “special.”  Children are children after all.

Well, yeah, children are children. But let me share two things I learned about just yesterday to illustrate how different life can really be for us and our children. These are two events I learned about in just one day that illustrate the range of things that occur in our families that may not occur in others.

Seder Max
Ellen Seidman recounted on her blog Love That Max a story about her son Max, and his ability to for this first time, this year, sit through an entire Passover Seder. And even communicate that he enjoyed it and wanted to do it again. The post recounted her sheer joy as a parent in reaching this milestone.

Sure, typically developing children may have myriad challenges at family dinners and events. But in most typical circumstances, the issues surrounding holiday meals usually don’t involve a child not being able to participate at all on a regular basis, and don’t require the full attention of one or more caregivers to help the child through the entire event.

Love That Max guest post

Helping our young and adult offspring with disabilities participate and interact and enjoy—and have our families enjoy with them—is sometimes something that is all but impossible. And it is something that, when it happens, is worthy of extreme joy and thankfulness!

The Hospital of Doom
Yesterday my friend Samantha (not her real name) shared with me her tween-age daughter’s experience in her latest psychiatric hospital visit. The child was in the hospital due to violent outbursts and causing harm. At this hospital, and remember this is 2000 and freakin’ 14, there was an 8 minute lapse in direct supervision of her shared room. And she was accosted by another female patient for up to 8 minutes while a caregiver stood outside the door to the room either unknowing or ignoring the issue. Either way, unacceptable!

Samantha, already at the end of her wits caring for this child, raised quite a stink (of course!) but was presented with block after block from an administration only concerned about legal ramifications.

The child, at the hospital to adjust medication and get help, got pushed further into crisis because of this attack.  And Samantha is worried about pushing the issue further because she is worried about staff possibly taking it out on her daughter.  Change hospitals you say?  There are no other hospitals in that region.  Bring her home you say? Eventually, but what about safety for herself, the child, and the rest of the family?

Intractable problem? We shall see what transpires as our thoughts are with Samantha. Do you have practical suggestions for this mom?  Know someone at the federal level who can intervene and help her overcome these local yahoos intimidation?  Private message me or comment below. I’ll share with Samantha (again, not her real name).

Share these two stories when you need to

So, the next time you hear a person belittling our community of parents and young and older offspring as “whining” and wanting “special” attention, please remind them of these stories.  We don’t want “special” attention. We just want to live a minimally happy and safe life, just like everyone else.

Best to all,

Gary

Hi,

Just when you start to inappropriately focus too much on the challenging things about being a dad, a person comes a long with a compliment and an idea that just makes your day and recognizes the hard work we do as Dads of Disability.

Today, in the snail mail, I received this letter and a jacket patch from a connection on Facebook I only met online and corresponded with probably once. This dad started a closed group called C.L.A.D. — Caring Loving Amazing Dads.  And apparently, I ranked!  Cool…

clad-letter

C.L.A.D. letter – Click to enlarge

Along with the letter came the C.L.A.D. arm patch. My first merit badge since I was in scouts!

clad-patch

The little things that some dads will do for other dads is pretty amazing.  More about this in a longer piece at another time. I just had to share this with you!

If you are interested — and worthy — of being a member of the C.L.A.D. crew, please contact Christopher at chrissobel82@aol.com or private message him on his Facebook page https://www.facebook.com/christopher.sobel

Have a great day!

Gary

10. July 2013 · Comments Off on Kickstarter Update #1 – Also, welcome to GMP and NSGC folks! · Categories: kickstarter, published elsewhere

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

 

Hi,

The May 2013 issue of Money magazine has an article by Jeff Howe (twitter @crowdsourcing, his writings are easily googleable) titled Paying for Finn.  The article gives a stark picture of the financial issues an upper middle class family faces to effectively care for their son who experiences autism. Whether you think you’ll like the article or not, I encourage you to read the whole thing before reading this rest of this entry.

Negative Response?
My response exists because I was utterly shocked at the level of anger aimed at the author in some social media and blogs.  I don’t want to quote too many of the angry notes, but here is a short selection.

  • “The way this is written  makes it sound like Finn’s disability is an inconvenience to his family.” From the Ollibean.com blog (Ed. 20-May-2013 article seems to have been retracted)
  • “When people speak this way about their children, and in a public forum, it makes me wonder why social services, child protective services or whatever agency is responsibly for child safety, are not monitoring these families to ensure the children are safe from being murdered by their parents.” From a Facebook comment on the Ollibean.com blog
  • “I am quite disgusted with the fact that this man has such anger and resentment towards his son. … Grow up and stop whining.” From a Facebook comment on the Ollibean.com blog
  • “The parent in the article is clearly disgusted by his son and does not even consider his child human!” From a Facebook comment on Karla’s ASD Facebook page (April 23, 2013 post)

I think I understand some critics’ perpectives, though I don’t agree
If I can summarize some of the responses I read, the critics are essentially saying that this father is seriously stressed out, blaming his son for the travails of his family life, and a seriously spoiled upper-middle-income man. I think some more savvy commenters are saying that perhaps Money/CNN editors were editing the piece to be a bit sensational.  (I’ll grant them partial credit on that one.)  Some commenters saw Jeff as wanting to “fix” his son. And while I am sure that some commenters did, it is clear to me that many didn’t read the whole article.  And I think that many critics missed the bigger thesis or at least the larger opportunity this article presented to the general (non-parents of kids with disabilities) population.

With that said, here’s my defense of Finn’s dad, Jeff Howe.

This was a Money magazine article – so the article was about money
This article was not in Physical Therapist Monthly or Autism Daily or a psychology or sociology journal or even in a general newspaper.  It is a magazine about money and a magazine for the most part targeted at middle to upper class people!  So, Jeff’s article was about money.

I understand that there could be jealousy at play. Jeff does do well compared to most Americans.  But regardless of income, if you look at the multiplier needed to raise a child with intense special needs without any outside assistance, even someone with a $100K+ salary could go bankrupt very fast. In my personal case, in the first few years of my son’s life, I spent over $30K per year above and beyond any school or external assistance to keep him safe and included and on the path to thriving.  (Those personal funds are long gone.)

And now, since my son is in a specialized school, should those local, state, and federal supports for that school disappear, his annual school and services bill would be over 3 times my last full-time pre-tax salary.  Not what would be left over after I paid other family expenses, but rather at least 3x my entire pre-tax income!

Maybe Jeff didn’t say it well, but one thing that the general public (not parents of children with disabilities) need to know is that “personal responsibility” is great – but when your child’s minimal needs are 1.5x to 10x or more than your complete family pre-tax income, there is a problem.  And this multiplier is in play whether you make $25K per year or $100k or more!

Jeff loves his child, did you read the whole article?
Here are few things Jeff said in the article.  I am not sure how anyone read the entire article came away thinking he thought his kid was a monster. (Again, I acknowledge some concerns about word choice, but not the thesis that Jeff is evil.)

  • “Despite it all–the broken glass, the tantrums, the bitemarks, the feces Pollacked across his bedroom wall–I quite love my sweet, strange boy.”

I am sorry, but that is a beautiful sentence.  It tells a general population the true horrors of a tantrum and that there is intense love there despite them.  I hear the criticism – that autism (and additional challenges many of us know well) aren’t all about tantrums.  But this is Jeff’s authentic experience to date of his son.  And there is intense love there despite it!  Let’s give Jeff props for his point in his family’s journey.

  • “There were other concerns. His eyes were deeply crossed and his legs hung funny. He lacked muscle tone.  The issues were ‘global. ‘ Later that afternoon we went to our local coffee shop to talk.  Alysia [his wife] cried.  I didn’t.”

I promised myself I wouldn’t talk about gender for this article, but that one needs to be addressed.  Not about money between moms and dads.  Not about how day to day issues are split.  That sentence sums it up and hones in on my empathy for Jeff.  It is hard for a dad to cry and mourn when you are learning about your child’s challenges.  You don’t feel like you should.  So you don’t.  Especially in public. Except for when you do.  This theme, this simple sentence is something I want to explore with other dads as one the the themes of my upcoming book. (Caveat:  I fully realize that some moms don’t cry and some dads are like waterfountains.)

  • “We’ve reached the point where our house, basically, is Finn’s trust fund, meaning we’ll be able to apply the proceeds from the sale of that to his care. That, of course, assumes that we won’t still need a big house to take care of him as an adult and that we can make enough money by downscaling to make a dent.”

Some of the critics callously say that if Jeff thinks Finn is too hard to take care of, he should give him up.  One even said we need to check up on people like Jeff to make sure they don’t murder their children!  What I see is a dad struggling to make the best decisions he can. These decisions include  the one biggie we all, as parents of kids with severe disabilities, make.  How much of a sacrifice must and will we make to our own old age, our own marriages, our own lives in order to ensure our children are comfortable for their whole lives.

He’s trying to show people (people who are NOT us in the community of parents of kids with disabilities) a bit of our reality.  If he, and the editors, had to use a bit of politically incorrect language or dire language to paint that picture, please forgive them as their goal was laudable. Jeff has as much love for his child as any of us do.

Jeff’s “Alien” metaphor in the introductory paragraphs
Some of the criticism, and I suspect readership dropoff, occurred in the first three paragraphs.  Jeff used a metaphor of his son as an ET on a baffling planet.  It didn’t really bother me, because I knew what he meant and what his intentions are.  Perhaps you’ve read the piece Welcome to Holland? Well, I personally find that its simplified metaphor of traveling on vacation to the wrong place by accident minimizing to my family’s experiences.  However some people find that the Holland piece really useful.  And if it is useful to some families, then I am all for it! So I find it hard to understand why are some criticizing Jeff for using a different, but equally valid metaphor.

Jeff wants to effectively help his son.  The third paragraph in his article closes with him saying “The best we can do is help our alien child negotiate the baffling planet on which he’s found himself.” I can see how someone could be offended by this, but I’m not. I think it is kind of good writing to try and convey these feelings to the uninitiated.

Criticism of ROI (return on investment) on your children
Some critics honed in on the ROI word and paragraph. This is what Jeff said:

“Now we’re plagued by perpetual guilt that we could — should — do more for our son. But like a lot of families with a disabled child — even families like ours, with some means — we’re faced with a Sophie’s Choice: If we empty the bank for therapy for our disabled child, it necessarily means not spending as much on his ‘neurotypical’ older sister. It’s an awful thing to contemplate: No parents should be forced to compute the ROI on their kid.”

Some commenters said there was no financial impact at all on their families (God bless them!) Others said that Jeff was boiling his child down to a monetary value. Others even criticized Jeff’s spending on therapy as him trying to “fix” his son.  (I think that last opinion is an outlier even in the parents of kids with disabilities community.)

Jeff is saying that no parent should have to contemplate funds for one child versus another.  He talks about it as a Sophie’s Choice.  Bottom line is that all families make decisions like this whether consciously or organically by just “letting them happen.”  I find it difficult to see how people have turned this into Jeff saying that a child has an ROI.  In fact, it is just the opposite – it is a Sophie’s Choice.

Getting the word out to general public, or talking to ourselves?
Ultimately, I think the criticism comes into play because many commenters on this article are steeped in the life and language and experience of parenting a child with disabilities.  That culture is great (I live it!  I get it! My peer parents are my heros and inspiration!) However, I think this article was written to a general population.

I think that it is important in any advocacy and education piece to meet the target audience where they live.  At the end of the day, I think it is important to get the word out about our challenges to the general population.  We would be better off to focus on the implications of Jeff’s thesis: “Look how hard it is for Jeff’s family financially, and they make really good money! Imagine what a single mom or dad that made $30K a year or is unemployed would have to do!”

Bottom line for me
Remember that the Money article was not written in or for a support group or a disabilities focused publication. Yes, some word choice or sentences probably could have been recast.  Yes, other parents, perhaps older ones with more experience or parents with fewer financial means or parents with a different cultural background would have approached the article differently.  Perhaps you’ll write one!  I would love to hear other detailed, authentic experiences about the money issue.

Submitted with warmth, respect, and admiration,

Gary

EDIT 15-May 1:40pmEST: For those of you visiting (thanks for stopping by!) there is a great public discussion going on about this topic on Jeff Howe’s Facebook page.  Use this link to get there.