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

20. April 2014 · Comments Off on Young children get it · Categories: Gary's Son, parent education, under five

Young children accept differences naturally. It’s the adults in their lives that train them to fear differences. By the time the tween years arrive, unless we’ve done an unusually thoughtful job of modeling behavior and attitudes, our children are likely to pick up attitudes decidedly less accepting than what most humans are perfectly equipped with by default.

Flickr/genista Creative Commons License

Flickr/genista (Creative Commons Commercial Share License)

Years ago, my young son who has multiple disabilities, befriended a classmate at his specialized school. The friend had more sophisticated social skills and communication skills in most areas. Yet, apparently, they were two peas in a pod. I set up a playdate with the two boys, and it became obvious to the friend’s parents, despite their own son’s challenges, that my son’s challenges seemed greater. Not only were we not invited back, but the parents treated me differently (I felt it was coldly) on the bus pick-up line. Not even a communication about their decision to stop communication with me about our children. Here was a case where, ironically, parents who should have known better and been more accepting didn’t take their child’s lead in acceptance and friendship. Fortunately, the two boys stayed friends during the school day, until my son transitioned to another placement.

Sometimes it is the adults who need to learn from the children.

Here is an essay (a micro-story really) that captures an innocence and perspective on acceptance we need to better foster in our children—beyond their younger years. It appears in the “coda” of my book Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them).

Lila the Philosopher

Lila was almost 4 years old when this story happened.

Lila: Do all people have all their parts?

Lila’s Dad: Well, most people do, but some don’t. (A discussion about birth defects, amputation, etc. ensued.) So some people don’t have all of their parts.

Lila: But they’re still people, right Daddy?

Lila’s Dad: Oh yes, Lila.

Lila: They’re still people. That’s the most important part.

– Lila

Lila has a lot to teach us all.

Happy Easter.

Gary Dietz is a New Hampshire father of a 14 year-old boy with multiple disabilities. You can reach him and learn about his new book, Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them) at http://blog.dadsofdisability.com (The other essays in the book and poem are longer than Lila the Philosopher.)

 

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

15. April 2014 · Comments Off on Today is the Release! · Categories: animation, book status

Hello all,

Today is the day that my book is officially available.  Thanks for all of the support.  Check out the links on this page to learn how to buy, to get samples, and to follow the amazing odyssey of support folks have given the project, and me. And the new “Review” tab.

I am especially happy that the Pediastaff review of my book just hit! Pediastaff is an agency that places speech, physical, occupational, school, and other types of therapists. They also provide professional development content.

Some great things coming up, such as:  Live events, speaking at the National Institute of Health (NIH) in Washington, the NH Family Support Conference, guest spots on radio shows (not telling about that just yet!), partnerships with other authors, some podcast work, and maybe a new animation or two.

I hope the official release of the book makes your (U.S.) tax day a little less stressful.

 

Cheers,

Gary Dietz