Wednesday, February 2, 2011

A Bit Rusty, Very Proud

Oh my gosh. Oh my, oh my. It appears that it has been about one year, 5 months, and 5 days since I last wrote here at One Dad's Opinion. Pardon me a moment while I stretch and yawn...

Ahhh, much better. And now, back to it.

You may wonder why I have chosen this moment to return to One Dad's Opinion. The reason is simple - I want to share a story with the one group who is most likely to appreciate its value. A group who I admire and feel a part of to this very day, despite the fact that I have been a dusty old member of the archives for well over a year now. Heck, some of y'all might not even know me at this point, might not know that I was part of a great team that represented the Autism Hub on several different occasions at the highly respected University of San Diego Autism Insititute.

I relented from my blogging for a long time. Partly it was because the constant controversy and attack/defense made me feel a bit mean. Partly because my real life demanded more attention than I could provide in any given 24-hour period. And mostly, mostly because my favorite topic of conversation at the time - my son J - had matured to an age that I no longer felt like I could write about him without his consent. Big, ethical issue that I decided must go in favor of least possible harm and most possible respect. So I quit. And here I am back again. And now you will see why.

Following is an excerpt from the blog of a very dear friend of mine and my family's. Someone I know and respect very much:


some words to chew on

Today I wore this to work out...

Except half way to gym, which is 30 minutes away, I decided that the lil' guy in the back was hacking to much to bring him to the kids' club.

No work out for mama: Bummer.

Sick kiddo: Bigger Bummer.

Solution: Do Zumba on the wii at my friend's house after I tutored her third grade son.

Simple enough, right?

Well, clearly not so much.

Her son has autism.

Just like my Luke.

And no they are not like Rainman (written with a smile).

Autism is a spectrum of behaviors that range from very mild to very severe.

My friend's son saw my shirt and asked me one of the most difficult questions I have ever had to answer in my life.

"Why would they want to take down autism?"

For him and all the others with autism, finding a "cure" doesn't make sense. They are quite content being who the are. They don't need to be changed.

They need acceptance.

So I explained to him that autism makes his brain see things differently from others in the world and that it makes him extra special.

I also explained that each one of us has traits that are different from others. We each have talents and we each have weaknesses.

Autism or not.

I spent the 1st few years of Luke's diagnosis desperately trying to cure him. Shame on me.

Having Asperger's (mild form of autism) gives him incredible talents. Why would I want to cure that?

Instead I want to spend my energy fighting to make the world know that different is okay.

As my friend's son so simply asked, "Isn't autism part of my personality?" He couldn't understand why I'd wear a shirt that wanted to take down who he is. This is a 9 year old.Amazing.

Instead of taking down autism, I want to take down discrimination. I want my friend's son, our Luke, and all the other spectrum kiddos to know that they are loved and accepted forwho they are.

We don't want to change Luke and we certainly don't want to take down his autism. After all, we don't want to take down Luke. We don't want to take down his amazing talents and perspective. He was put together and perfectly made. We don't doubt that for a minute.

The power of words is mind blowing. And the insight and question from an introspective 9 year old, made me think harder than I have had to for a long time.

I hope you think about it too.

Much love,

Perhaps I lack the flair of a Hollywood screenwriter in creating tenuous drama, but can you guess who the 9-year old boy is in her story? Yes, it's J, my son. I am so freakin' proud of that kid I could burst. It's not like I have sat down with J and expounded on the social model of disability ... the kid has never even heard the word Neurodiversity. Can't you see? J's comments simply make me proud of his intent to carve out his own indivuduality. That's it. I'm damn proud of him and I'm absolutely thrilled that this amazing kid counts me as a member of his team.

I'm not so sure that this Dad has the gumption to return to blogging. But I'll tell you this - while J's assertions (and my friend's resulting change in worldview) are most definitely not a result of any tangible outcome that has been created by the years and volumes and transcendent quality of those of us who have participated in the combined output of the Autism Hub, they sure as hell stand as evidence that our message rings sound and true.

Thursday, August 27, 2009

Peg Board

Hello readers!
I am very pleased today to offer you One Dad's Opinion's second-ever guest-blogger piece!

This piece was written by my friend Diana Pastora Carson of Ability Awareness. Diana's brother, Joaquin, is autistic. Currently, Diana and her family are actively pursuing the important process of transitioning Joaquin from institutional care to his own home, and addressing all of the community involvement pieces that go along with that.

This essay was written after one of many appointments that are part of that process, an appointment that occurred yesterday. This piece is also to be included as a chapter in Diana and Joaquin's upcoming book, "A Walk With Joaquin".

A Walk with Joaquin
By Diana Pastora Carson

Peg Board

I watched under emotional anesthesia as the teacher pulled out a bright, foam peg board and asked Joaquin to show us how well he can work.

Peg Board. Really? You mean we’ve come 100 miles for this momentous occasion, the first official visit from Joaquin’s community support staff (the people who are going to take him away from all this madness and facilitate him having a real life, one with meaningful experiences, choices, and enjoyment) only to walk into a noisy, windowless room where a good-hearted, but clueless “psych tech” actually boasts of Joaquin’s ability to put large, colored, plastic pegs into a peg board for no apparent reason other than to seem productive and to be compliant?

In this second millennium, the absurd and unbelievable scenario where a professional in the most highly funded state agency working with people with developmental disabilities offers a peg board to my brother, a 40-year-old man who loves walking, riding bikes, and socializing…not peg boards, defies all reason. In what seemed to be slow motion horror, I watched, and even encouraged Joaquin to sit down and try, knowing he would understand what I was doing and would forgive me as soon as we had humored his instructor. I just wanted to get it over with and show a cooperative spirit so we could get the hell out of there.

The poetic ending of this story is that Joaquin refused to perform the task. He sat down at the table in front of the peg board, wrinkled his nose and looked at us as if to say, “You’re kidding, right?” and then put his hand on his head as if fighting off a headache. When prodded, he shook his head, clearly communicating that this was not his idea of fun…or life. “Okay, Joaquin. You’re telling us that you don’t want to do this. It’s okay,” I assured him. It was actually great!

But what if he HAD done it? Would it have meant that he was content? Or that he had finally grown to be compliant after endless years of “treatment.” Would it have meant that he wanted to live in an institution? Or would it have meant that he knew no alternative?

But he had not complied. Did Joaquin know that his act of committed defiance was the perfect metaphorical statement of empowerment? Did he understand that he was actually saying, “I am my own person and I want to live my own life?” Did he know the implications of his action? In my mind, he understood, and he’s a badass genius.

Diana and Joaquin

Saturday, August 1, 2009

Quintessential Summer Day

Wow - we had a lively day around here today!

Firstly, two of our boys - J and C - rode horses in the REINS "Fun Day" Horse Show. REINS is where people with disabilities are able to ride horses in a supportive environment. I've written a lot here on One Dad's Opinion about REINS, as it represents one of the gravitational centers of our family's community involvement and deserves much mention.
This was J's fourth time riding in the "Fun Day" contest and C's first. It's called "Fun Day", but the annual event that precedes REINS' monthly summer break in August groups the students together by skill level and judges their riding performance against each other. Its all in good fun, and creates a tremendous sense of pride amongst the students (ranging from the youngest - Baby C, at 2 years old - up to riders in their elderly years). See this post for a look at their oldest rider, Millie. She is 93 years old. Wow.

Of our boys, C was the first rider of the day. He acquitted himself marvellously well, and brightened his own day and the rest of our days as well with his bright smiles and obvious
affection for his horse and instructor.

He was particularly impressive when completing the "Round the World" move that he always looks forward to. (Spare me the "Horse's *ss" jokes please...)

C won the pink 5th place ribbon - we couldn't be more proud of him!.

After C dismounted and we gathered around him to share the moment, J pointed to the ribbon pinned on C's chest and gave C a little nudge and said, "Congratulations". Both Kaitlyn (the wonderful instructor for both our boys) and me overheard this and commented to Jason how nice it was for him to say that. He very matter-of-factly replied "I was reading his ribbon actually." All-righty.

One could almost imagine C riding off into the sunset like John Wayne...

So after a while waiting in the heat and dust, it was finally J's turn to ride with his group of 6. This was a particularly exciting competition for J, since it would be the first time he would ride independently, without Kaitlyn holding the horse's lead. He mounted up on trusty old Betsy, who he has been riding since day 1, and prepared for his turn.

In a word: Success!
J completed the entire dressage routine without any assistance from Kaitlyn.

Note in this picture the separation between J/Betsy and Kaitlyn - this is an independent performance. Oh, and that look on J's face? Nervous self-satisfaction.

J's excitement-meter was running very low today, so it is difficult to know how he felt upon completing his routine. But when the ribbons were presented, all that changed. J won first place and received a BLUE ribbon! This is dually awesome as blue is J's favorite color - a preference that borders on obsession and influences a large array of J's decisions in life. Blue rules J, and so you can imagine his elation at receiving the Blue Ribbon.
One Dad even got to share the moment with him and Betsy. What a great moment.

After 3 hours of tramping around in the dusty, hot environs at REINS, what better way to cool down than a swim in the pool?

NOT SO FAST! Today, our pool had in interloper that had to be addressed before we could go in. I bet you didn't know this post would include - Tarantula pictures!

I realize it is difficult to grasp scale in a small internet picture, but this spider's body was about 3.5 inches long, with a full leg-span of around 6 inches. Here he is walking along the edg
e of the pool-skimmer I used to retrieve him from the water.

Once we moved our hairy friend to a more spider-friendly neighborhood - ya know, somewhere other than our freakin' pool - we dove in to escape the summer heat. One Mom and I are pleasantly surprised by C's progress in branching out his experiential tolerances. But remember - autism consists of developmental delay, not developmental stasis - so it should be no surprise that C is jumping in the pool now all by himself and generally having a rip-roaring time trying to keep up with his older brothers.

That includes being thrown into the pool.
Hey, give me a big sloppy dog and a smilin' 2-year old "chunky monkey" and I'm One Happy Dad.

I hope you are all having a great summer like we are - and that you are not finding Tarantulas in your pool or anywhere else.
Next week ... Surf Camp!!!

Tuesday, July 28, 2009

Awkward Moments ... are okay

After Tae Kwan Do class today - a sport in which both J (age 7) and T (age 6) have achieved their "Camo belt" status (which bugs me - I am a military history aficionado, and I'm making an educated guess that "camo" was not one of the color choices made by the originators of Tae Kwan Do). T was snapping his side kicks and giggling during stretching as always, but J was clearly dragging tail throughout the session. Physical fatigue did not seem to be an issue - his heart just wasn't in it today. S'ok - kids are allowed to "check out" sometimes in This Dad's Opinion. I'm not raising a Commando force, just a few kids.

Moving to the point - after class I took the boys to Baskin Robbins. Baskin Robbins throws J a little off his game since they advertise 31 flavors but sell 42 flavors. I have to agree with J that the universe is slightly askance due to this unsettling factoid (a factoid that is rediscovered immediately upon every visit as J re-counts the flavor labels to make sure they still offer the ridiculous sum of 42 flavors). But this time, on today's visit, there was no re-count. J was thrown a curve-ball immediately upon entering the door. You see, someone said, "Hi, J".

J froze in place, clearly torn between counting the flavors and becoming invisible. He grabbed me around the thighs with both arms, looked up with an obvious and unabated look of bewilderment in his big eyes, and whisper-shouted, "I don't know who that is."

(Aside: I must define the whisper-shout. This is J's verbal channel that he deploys when he is trying to speak 'under his breath'. The thing is, J doesn't modulate that very well and ends up over-compensating his voice volume to make up for the whisper-effect that prevents a voice from carrying distance. So he winds up with a very loud, throaty whisper-shout that he honestly believes is only heard by the person he is oriented towards at that exact moment.)

The boy who accosted J (well, actually he only said 'hi') was sitting with, presumably, his Dad and older brother. The boy was probably 9 or 10, the brother probably 18. All in all, and leaving out some of the "small talk" that surrounded this fragmented interaction, they were a perfectly friendly bunch.

I peeled J off my leg and encouraged him to pick a flavor. He picked chocolate (no surprise there - read this post I wrote back in 2007 to see the consistency of J's taste for chocolate) and went to his favorite position of flipping through the B-R catalog to hone in on his favorite characters represented in the fashion-forward genre of frozen ice cream cakes. At one point he moved closer to the table with the boy who had said 'hi', and the same boy leaned over and said, 'J - you remember me! From Vacation Bible School!" (VBS was last week - not a long time ago) J grabbed my hand and whisper-shouted to me "I think I can't remember him. I think he has different clothes!" Once I had paid up, I walked over to him and crouched down to have a "man-to-man" talk.

I said, "J - on the way out of here, I want you to walk up to the boy who said 'Hi'. I think you should tell him you are sorry you don't remember him, and thank him for saying hello. The reason I think you should do this is because it is the polite thing to do. Do you agree?"
"Yes, Dad, I will."
So we walked over to the door and the boy. Jason grabbed on to me tight and whisper-shouted (the boy could definitely hear, as could everyone else around) "I'm scared!" I told him he would do fine, and we could just leave if he wanted to but that he should try to be polite. "But I'm nervous!"
We stopped in front of the boy. J looked at his feet and whispered - not whisper-shouted, whispered - "I'msorryIdidn'trememberyouthankyouforsayinghello" and we left. The boy was responding, but we left in a hurry. As we crossed the parking lot, I asked J if he felt like what he did was the right thing. "Yes". I asked if he felt better to have done it, even though it was hard to do. "Please don't ask me about that right now!" was his reply. Okay.

Saturday, July 18, 2009

Redefining the "Happy Camper"

I am a very poor blogger these days. Blogging requires somewhat of a repetitive tempo, and my internal blogging metronome has seemingly ground to a halt. This despite a veritable wealth of fascinating goings-on in the microcosm of our family, and in the macrocosm of the autism community. I feel like opportunity after opportunity to write some thoughts on things like the IACC, like the new movie Adam, like the shutting down of fraudulent autism cure peddlers "Care Clinics", like some new and fascinating research and how people are incorporating its results, like so many other things.
So why today? Well, I've been shamed into it. First, I notice that my friend Do'C has posted a new blog entry over at Autism Street. Next I notice that my friend Bev has done the same over at Asperger Square 8. The three of us make up the triumvirate that has spoken several times to large audiences about blogging and autism, but here at One Dad's Opinion there was just the sound of crickets chirping. Then, I log on to the good ol' Autism Hub and see a post by Sharon in which she names little ol' me as a guy who writes things about autism that she likes to read. Okay, so when called out by "Best Family Blog in Ireland", one tends to want to respond.

So on to the point of this post, which is to describe a recent camping trip. Here in our neck of the woods, we hang out with a group of 4 or 5 families on a regular basis. When we all converge, as we recently did at a campground surrounding a few lakes here in SoCal last weekend, the tally comes to 10 adults, 13 kids. 23 of us (one family was absent this time due to a new baby arriving a few weeks ago). Of the 13 kids, 5 have been diagnosed on the autism spectrum. If you want to see a classic, moving, changing representation of the topographical model of understanding the autism spectrum, join us for a weekend sometime!

This group, I'd like to mention, is NOT a support group. This is a group of families who enjoy spending time together, no matter anyone's specific circumstances. We are also a heterogenous group in terms of our views of autism etiology and treatment, and it matters not one whit.

So how, with this many different people of different ages and interests and, yes, neurological profiles, does one ensure that everyone is a "Happy Camper". Easy answer: One simply cannot. But one can describe several circumstances of Happy Campers, as well as some simple and general observations, so here goes:

In the campground's pool, my son J was doing his typical pool routine after playing with friends for a while. He will break away from the group and just kind of "be" in the water. This consists of swirling around, inverting himself, periodically floating and treading, eyes closed most of the time, tuning out minor nuisances and most noises (I think), and reveling in the weightlessness of being water-bound. But this time, he had a silent and unintentional partner. One of the other boy's Moms pointed out to me that her son, who is three years older than J and very similar to him in a lot of respects, was doing EXACTLY the same thing about 12 feet away. Neither one seemed aware of the other, but their movements, and tempo, and intent seemed identical. It was Autistic Synchronized Swimming.

One of the boys, though he will never come right out and say it, is qualified at age 8 to be President of the Audobon Society. Upon watching some ducks (apparently a newfound 'special interest' for Baby C) one Mom asked another what kind of duck was that peculiar one with black feathers and a white beak. This boy, who was otherwise silent as he watched the ducks (and was keenly aware of all other surrounding wildlife) piped up and said, "That is NOT a duck, but it IS a Fowl. That is a Western Coot." Later as, he walked along side me in his trademark skip-step with windmill arms, he stopped and whacked my arm with his. "Look! 2 Grey Herons!" And he skipped off. His identification abilities do not stop at birds - he intently studies any and all animal info he can and is an expert in recognizing virtually all birds, critters, and bugs in Southern California. He is 8 years old.

Several of the campers found great solace in enjoying some time around the campfire. Some of these campers enjoyed cigars, Black Bush whiskey, and a game of Dominoes. These rare and elusive creatures are called DADS, and can be viewed in their natural habitat sometime after 11:00 p.m.

One of our goals was to get J to learn how to ride a bike. This he did, for at least 20 feet without anyone's assistance. Hooray for J! Physical coordination is not one of J's long suits (as I wrote about here). Meanwhile, my middle son T quite literally drove his bike into the lake. When I came along with Baby C strapped in behind me (and limited in my ability to react as a result of that), one Mom had jumped off her bike, and was diving in after T who at that point was just seen as a floating safety helmet. She retrieved the child and the bike. T, once he shook off the initial shock, turned to me and said - and I quote - "That was AWESOME!"

Baby C likes ducks, Baby C likes water. Baby C does not respond to his name very well when interested in other things. Baby C will walk well over 100 yards without ever looking back to 'reference' Mom or Dad. Baby C has the autistic child's trademark lack of a sense of "danger". Baby C was watched very, very closely every minute of the time. Baby C's parents, One Dad and One Mom, are looking forward to Baby C becoming plain ol' C. The terrible two's started in our house 6 years ago and haven't stopped yet as the baton has been passed form child to child. Do we get an award for all of this? Oh yeah, we did :)

Ya know .. this wasn't so bad to get back at it. Maybe I'll hang around here at One Dad's Opinion a bit more often...

Saturday, June 27, 2009

Way Beyond Awareness

Though I haven't had adequate time to organize my thoughts prior to writing a summary of the really great day we had at USD's Summer Autism Conference, I have to refer back to my write-ups of previous experiences there and arrive at the conclusion that only an inadequate summary is possible anyway. To actually grab a hold of and present to someone who was not in attendance the overall tone of this conference would be exceedingly difficult.

Fortunately, veteran Hub blogger Dad of Cameron (Do'C) has provided an excellent blow-by-blow of our 2-hour presentation, including links to some of the video and written media that we utilized in our presentation. Do'C also added a palpable energy to the presentation that would be sorely lacking without his contribution.
I couldn't be more pleased than to count Bev as among my friends and allies, as she is quite simply one of the most elucidating people on the subject of autism that I have had the pleasure to encounter. Bev gives of herself in many ways - far moreso than myself or Do'C - in terms of the personal commitment required to carry this all the way through. I respect that immensely, and I think anyone who has seen Bev's presentations would agree that there is something - a very nebulous, abstract something - that is pervasive during her presentation and that creates an intensity that is difficult to describe, but easy to buy into. I think the word I am looking for here is ... Honesty.

Two amazing people that I am proud to be associated with.

I want to extend a personal invitation to any new blog readers who may be visiting after seeing or meeting us at USD to shoot me an email or comment on this post if you would like any further information from our group beyond that which we talked about during the conference. Please also look at the archives or maybe some of the "Best of One Dad's Opinion" on the right sidebar if you are interested in other things I have written.

One SLT asked us during the panel presentation what resources may be available to get our message of dignity and respect to the group that she works with at her site, many of whom speak Spanish, Kumeyaay, or Filipino as their first language. I mentioned the Exceptional Family Resource Center as one possibility for a local resource, and so have included a link to their website (click the underlined words). I would take a personal interest in assisting the EFRC to archive and offer some of the resources that are available via the Autism Hub, if you choose to initiate this contact. Stephen Hinkle also mentioned Babelfish as a posible resource for such families. It also so happens that I am a passable Spanish speaker, and Do'C is quite fluent.

I'd also like to thank, once again, conference organizer Dr. Jodi Robledo (whoe husband and infant daughter were also diligently spreading sunshine all around the conference environs) and , of course, Dr. Anne Donnellan. Of Anne Donnellan I have often said before, she was "ND" before "ND" even knew itself existed.
Of the other presenters; among them Stephen Hinkle, Martha Leary, Nan Negri, Diana Pastora-Carson, Jacqui Thousand, and others - I simply can't say enough good things.
Thanks also to Steven Kapp for his contributions, and also to Daniel Lightfoot from Autism Speaks - a research scientist who wanted to - and I believe did! - learn some new things from the autism community that go far beyond cell behavior.

And to the teachers, administrators, SLTs, aide workers, and parents who took the time to attend the conference - thank you! I hope you benefitted from the time invested and that you will recommend others attend this great conference in the future.

Wednesday, June 17, 2009

Comic Relief


That is the name of an online comic book I stumbled across written by one Dan Woodman. Dan Woodman, according to his "About the Artist" page, is "...mildly autistic. The process of creating SOIL is intended to be therapeutic as well as humorous. Dan identifies with SOIL’s characters — especially Cory — who illustrates many of Dan’s own personal challenges..."

I read some of Dan's comic strips and found them to be wry, and funny, and very good at representing specific challenging aspects of Asperger's Syndrome.

Regardless, it is very nice to see the culmination of the effort and creativity that Dan is applying to this comic strip. I would be thrilled to see "SOIL" make it in to a mainstream setting such as a major newspaper so that more people could be exposed to Dan's work. If you explore the website you will see that "SOIL" has been seen in some local papers and has some nice reviews as well. There is even a book, cited as "A massive collection of SOIL in one volume!"

So kudos to Dan Woodman and "SOIL", which now ranks as my second favorite comic strip on the subject of autism. My absolute favorite? Square Talk, by Bev at Asperger Square 8.