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!!!