09. October 2014 · Comments Off on Helicopter Parent · Categories: advocacy, Gary's Son, parent education, published elsewhere, sites to visit, video

Hi,

I am happy that the essay I wrote for my book has had so much positive reaction in so many places.  For example, it had a follow-up essay for the Cool Cat Teacher, was reprinted in Parents.com, has been discussed in Nora Colvin’s blog, and now is reprinted at the Good Men Project.

For the first time, here is the 2008 video that is referenced in this essay.

Thanks,

Gary

06. August 2014 · Comments Off on It’s not college · Categories: advocacy, Gary's Son, parent education

NOT A TYPICAL GARY POST:

If I hear or read another person telling me that one should think of having your young child in a specialized residential school setting as “him going away to college, just early” — I will punch them.

(OK, not literally, but you get the idea.)

Specialized school placement <> college.  Get it?  Yes, we both “miss our kids” but it is NOT the same thing.

END NOT A TYPICAL GARY POST.

28. May 2014 · Comments Off on An early father’s day present from a Jedi Knight · Categories: Gary's Son, parent education, published elsewhere

Hi,

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.

Warm regards,

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 believe the word “compliance” is misapplied in our special education system. Please let me briefly explain my thoughts and perspectives about this opinion. This piece is based on observations of my 14 year-old child’s various school placements over the years. And it is enhanced and supported (and the examples I used are blended with) other opinions and anecdotes I have read and heard about, especially those I have encountered on some autistic adult advocacy blogs.

Compliance from Dictionary.com

Compliance definition from Dictionary.com

Three important notes: (i) Autism isn’t my son’s primary or only “diagnosis” issue in school. There are other complexities, although the impacts of the word “compliance” are still an issue. (ii) I don’t expect that everyone will agree with all aspects of this piece (iii.) I really think my son’s current placement is excellent and his teachers and staff know most of this stuff already for the most part and have reacted positively when I have brought up issues to them directly and with respect.

Compliance is a non-specific word

Much like the cloying phrase “good job” (well, at least it is when “good job” is expressed with an infantile sing-songy tone and no verbal specifics about what exactly was done well), the word “compliance” is similarly a non-specific.

An infantile, non-specific Good Job (a 'shortcut'):
A more appropriate, specific compliment said with respect (takes two extra seconds):

 
 
Similarly, I think “compliance” is a lazy shortcut term for something more important or more measurable or more relevant. “He was compliant today.” What does that mean? That he did what he was told to do because his spirit was broken and he went through the motions? That she did what she was asked to do because she understood why she needed to do something? That he was guided toward possible options and that staff and support folks helped him reach decent decisions about what to do or not to do?

If something was so, say it was so and what happened! It doesn’t take much longer at all.

Compliance is a term rarely used for typically development peers

Visualize your stereotype of a typically developing ninth grade high school student. In the example in my mind’s eye, she is in the honor society, a violin player, and on the swim team. Feel free to visualize your own example. Now, imagine that there was some issue at school with her (doesn’t matter what the issue is.) Can you imagine a report card coming home for this young lady with the sentence: “She is non-compliant 10% of the time.” What the heck would that mean? Or in a parent-teacher conference: “She is having compliance issues.”  Or: “It was a great quarter.  She was very compliant!”

See how odd that sounds? How inappropriate!

Compliance implies that conformity is of priority value

At the heart of the issue, for me at least, is that conformity is not of paramount importance. When I was in school, I was certainly a handful. I was certainly not a conformist. But I value an independent spirit. I want my child with complex special needs to be an independent spirit as much as possible too!

I really do get the differences

Let me be a pragmatist and let staff and specialists know that yes, I really do get it—that a youngster with severe behavioral and developmental challenges presents a completely different context than what I did in the 9th grade as a “typically developing” non-conformist student. Yes, a wide range of safety issues, educational challenges, language issues, socialization issues, school-expectation issues, and other issues are really different for students like my son then they were for me and for his current age-peers in a typical school setting. Things do have to be different for them and those that teach and care for our students who are not typically developing.

But different doesn’t have to include a measure of “compliance.”

Before this post turn into too much of a rant, I’ll cut myself off again and offer three specific examples that I think may illustrate just how easy it is to state and record things quickly that have much more value to wider teams (and family members) that need to understand goings-on at school when the students themselves can’t communicate detail.

Example Alternatives

Here are three examples I hope may address some of the issue I am pointing out.

Instead of saying “he was compliant when I observed him in class” say “I observed him participating with his peers and respecting their personal space with no inappropriate touching. In addition, he responded to the teacher’s academic and behavioral requests made of him, such as taking his turn at the Smartboard and ending the activity without a physical aggression when the lunchtime warning bell rang.” The latter tells a lot more about what he did in class and gives us a specific frame of reference to track improvements.

Instead of saying she was “compliant” in her bathroom reminders and training, say “When she was asked to try to go to the bathroom, she used a verbal response to indicate that she didn’t have to. Since she almost always responds negatively to verbal bathroom inquiries, and based on the timing of her last bathroom visits and accidents, we gently guided her to the bathroom and asked her to try for a minute anyway. She responded positively to this verbal re-iteration of guidance.” The latter tells us a lot more about her bathroom habits and expressive verbalization about said habits. And will help us come up with a plan to help her become better at expressing her need (or lack thereof) to use the bathroom and further reduce accidents.

Instead of saying “He was non-compliant when his group was asked to put on coat and gloves and head to the bus for a day trip” perhaps a more specific recording of issues would be of more value. For example, “He was really enjoying the morning activity prior to the bus trip. He really didn’t want to go on the bus trip, and did a good job verbalizing that, and clearly remembered a past trip when he was allowed to stay behind with a favorite staff member. Sometimes, we are able to accommodate and respect those requests. However, we didn’t have the staff to do so today, and explained that to him. So, we gave him some time to accept that, but we needed to help and encourage him to get on the bus anyway.”

Life is not about bending to the will of others. But students do need to listen.

Of course students of all kinds need to listen. For safety issues. For “rules” issues. For educational issues. But school is not a prison. Students do not need to be unbending robots. They didn’t lose rights by being in a special educational setting—any educational setting actually.

As we try to teach our students with severe special needs how to navigate the world, we need to meet each individual where they need to be met in helping them grow their independence to the best of their ability. But how can that happen if some teachers, some programs, some specialists are using “compliance” as a shortcut to the more difficult, sometimes more time consuming, but ultimately more important task of helping individuals thrive with as much independence as possible?

Warm regards,

Gary

And, as I say in the intro to my book, “If there is unintentional offense in this post, please let it start or continue a dialog, not end one!”

30. August 2013 · Comments Off on Lessons in love and intergenerational hand-holding · Categories: advocacy, Gary's Son, parent education, violence

Hi,

My latest piece is up on the Good Men Project.  It’s called “We’re Not Gay, That’s My Son: Lessons in love and intergenerational hand-holding”

Click on the image to have a read.  And although this particular essay is not in the book, there are 41 pieces by moms, dads, kids, (and me) in the Dads of Disability book at www.dadsofdisability.com

good-men-hands

 

 

 

 

 

 

 

 

 

 

 

Thanks,

Gary

 

29. August 2013 · Comments Off on More misinterpreted word power · Categories: advocacy, Gary's Son, parent education

Hi,

My son sometimes says the word “dark” when he sees African American, Indian, or other darker skinned folks.

ChessSet

No, he didn’t learn the derogatory term “darkie” from his family. He is just noting an actual, physical thing in the world from his perspective using his language to the best of his ability.

When he was smaller, it could have been written off.  Now that he is an early teen, it could become a problem.

Do you have any suggestions (esp. my friends of color) about how I can work with folks he may encounter who hear him say this?

Thanks,

Gary

(Image from Wikipedia, creative commons license)
27. August 2013 · Comments Off on Dr. Jane Goodall related project perks · Categories: advocacy, animation, Gary's Son, kickstarter

Hi,

In 2010, my son Alexander and I had the opportunity to meet Dr. Jane Goodall.  Afterwards, we struck up an ongoing correspondence via email. This is reflected in the Dads of Disability animation and will be reflected in one of the essays in the book.

 

acd-goodall

Dr. Goodall was good enough to send along some Mr. H Junior plushie Chimpanzees and collectible photos of herself and Gombe chimpanzee Freud taken by photographer Neugebauer.

 

One perk (two available) is a ten-pack of the Dads of Disability paper book, the Mr. H Junior, and the photo in a frame for $219 shipping included (US and Canada only).

 

 

jane-and-alexAnother perk (one available) is (a) Museum quality framed original animation artwork of Dr. Goodall from the project (click here to jump to the point in the video this art comes from) (b) A mat opening with the animators signature (c) A mat opening with the Gombe chimp photo (d) A hardcover of Dale Peterson’s Jane Goodall Biography (unsigned) (e) A Mr. H Junior plushie and (f) A ten-pack of the Dads of Disability paper book.

 

Other perks start at $9 for the eBook and $19 for an eBook/paper book combo.  Please visit the Indiegogo project page!  Like it from there and follow it, even if you can’t contribute.

Thanks,

Gary

Please Note:  The Jane Goodall Institute nor Dr. Jane Goodall explicitly endorse the Dads of Disability project. The donations of Jane Goodall related materials to the project were based on a personal correspondence between her and the author and you should infer no endorsement.