Recreation
Special Olympics in Greece 2011
Published July 30, 2009 @ 02:15PM PT
We've had an occasional series of international guest bloggers here from Australia, the Netherlands, Canada, Germany, the United Kingdom, and Brazil. My own understanding about autism and disability took on a focus beyond the US after I went on a trip to Greece with some of my students back in March. While there, I met two mothers: Emma's son Dimitri has Angelman Syndrome and she blogs at The Iron Chicken. Marilena's son is Ρίκος and she blogs at Τι λέει το πρόγραμμα?, which I have been doing my best to follow (with the happy side-effect of helping me to learn Modern Greek). Emma has a post on the Special Olympics, whose World Summer Games will be hosted in Athens in 2011.
Emma notes that she feels "irritated, and occasionally out-right angry" about this and for reasons that I share, and have somewhat expressed in two of my own posts on the Special Olympics. It's not the ideas and the philosophy the Special Olympics that irk but, as Emma cogently writes:
The irritation stems from the knowledge that Greek politicians are going to being doing their photo opportunities and making their postive statements about inclusion and acceptance and the progress that Greece has made etc, etc, etc, when in fact they are doing pretty much.....nothing towards inclusion and acceptance or anything else regarding disability.
And while I'm sure that every country which participates in the Special Olympics also have incidents of discrimination, neglect and abuse towards people with disabilites, I can't help but wonder where Nikos, a boy with Down Syndrome who is currently living in an institution in appalling conditions, will be.
Add to that a comment I read on facebook group Mental Disability - Eimai diaforetikos... e, kai? about children with autism being excuded from the Special Olympics in Kastoria because "the children with autism are particularly aggressive and have the tendency to be distant", I'm left asking myself whether Greece is ready to host the Special Olympics?
I hope...I hope many things. I hope the Special Olympics will help to dispell some of the myths and stigma which still surround intellectual disability, I hope that people will be encouraged to take more of an interest in what is going on around them, to people in the their own country. And of course I hope that the athletes participating in the Special Olympics have a great time.
I hope my feelings of confusion and irritation are misplaced.
I'm completely with Emma here. Charlie loves being active and excels at bike-riding and swimming, and we've been hopeful about Charlie participating in the Special Olympics. The reality of having him be on a team and/or participate in activities has been much more of a challenge in itself. I remain hopeful that Charlie might one day participate but I also want to make sure that has indeed has a "great time" and that the focus isn't on the competition, but his participating.
Like Emma, I hope indeed that my own "feelings of confusion and irritation are misplaced."
Camp Charlie
Published July 30, 2009 @ 12:39AM PT
That's how Jim and I have been characterizing our summer. At first I saw Camp Charlie as a camp with one camper (Charlie) and two counselors (Jim and me), hurrying around in a somewhat harried manner. As July comes to an end, I've felt that it's become a camp with three campers on a full schedule of:
(1) Morning: Academic time (Charlie goes to Extended School Year (ESY), Jim and I sit in front of our respective computers and get as much done as we can).
(2) Afternoon: Recreation (a long bike ride, sometimes a swim + gym time); quiet time (in which I try to sneak in typing practice and other "edutainment" between video-watching on the computer); out-in-the-community time (often visiting various stores); canoeing (Jim's latest addition to his and Charlie's roster of outdoor pursuits)
(3) Evening activities: Shorter bike ride and/or basketball
Back in June, I was anticipating that this was going to be a tough summer. Charlie's school year ended with a stack of incident reports. He'd already been having a difficult and difficult-er time as the school year progressed and Jim and I were called into a district-requested IEP meeting in June. That meeting was cancelled by the district and rescheduled for July at which time we found ourselves back on the road to find Charlie a school.
We've been making the rounds visiting schools, reviewing Charlie's records in the school district offices, setting up appointments, having Charlie observed.
Many of you have been on this road before and your support suggestions have been more than welcomed. Just knowing you're all out there has made a tremendous difference: I'm heartened not only when I read your comments here. When we're at the table talking to the school district and the tape recorder is running, it means a great deal to know that you're not alone, that your child is one among many children for whom our educational system is not working. And that means, we need to change the system, change what is going on in the classroom and in the schools, and figure out how to create an appropriate education and accommodations for students with disabilities.
(As many people have pointed out to me, I should watch what I'm writing here about my son's school situation; school districts, consultants hired by the school districts, and others can of course read this. So I'll leave it at that.)
But back to Camp Charlie.
On Achievement & Accomplishments
Published July 27, 2009 @ 02:27PM PT
10-year-Ben Kredich, who's on the spectrum, swims the 25-yard freestyle in the Greater Knoxville Area Interclub Swimming Association City Championship Meet, the July 26thGo Vols Extra reports. And 18-year-old Robbie Phillips, who's also on the spectrum, competed in yesterday's ninth annual Nautica New York City Triathlon, as noted the July 26th Ocala.com.
My first thought: Charlie's two-thirds ready for a triathlon. He can bike 12 miles at least and, if needed, he could swim as long as he had to. He just has to learn to run like Robbie and Alex (Charlie can certainly run, but not in any organized or competitive setting).
Second thought is, while avidly cheering on Ben and Robbie for their accomplishments, I'm mindful of a recent post by Dora: Is the only reason their achievements were reported because they're on the spectrum and the news stories therefore have that heartwarming edge? "Why should it come as a surprise that autistic kids, like any other kids, benefit hugely from doing stuff they like and are good at?," as Dora wrote; why should it be a surprise that autistic kids (and individuals on the spectrum) can achieve in athletic events, and otherwise?
Music Interests (and Questions) Coast to Coast
Published July 21, 2009 @ 04:00PM PT
On the extreme east coast of the U.S. in Massachusetts, a young autistic girl finds joy in the classical violin. On the extreme west coast of the U.S. in Oregon, a young autistic boy finds joy in indie pop. But the two stories about autistic kids with musical loves otherwise possess a nearly interchangeable story.
On one hand these stories are about kids being kids, having interests, gaining self-esteem and self-expression, falling into love with creativity. Stuff that one hopes is part of the life of kids, any kids. And yes, the activities these kids are doing would make decent local news stories if the kids weren't autistic too.
But on the other hand, these stories do fall into the boring autism news stories 101 story of AMAZING ACCOMPLISHMENTS!!!! (as well as contain some fairly barf-worthy stigmatizing language).
And, beneath both those surfaces, why should it come as a surprise that autistic kids, like any other kids, benefit hugely from doing stuff they like and are good at? This isn't a kid question (ya'll know I typically make it policy not to blog about children, and this post is not about children but about some more universal ideas), because the same question can be asked why should it come as a surprise that autistic adults, like any adults, benefit hugely from doing stuff they like and are good at, and participating on their own preferred terms in the community?
No matter what the age, diagnosis, lack of diagnosis, or what all else, we are people, and (surprisingly? er...) we tend to benefit hugely from being treated as such.
Small Acts of Advocacy
Published July 18, 2009 @ 12:47AM PT
There's taking action in the big broad sense--campaigns to get legislation passed, calls for greater understanding---and then there's the small and daily works of advocacy that one attempts, just to make things a bit better, or so one hopes.
Yesterday was hot and humid and sticky here in the Garden State. Charlie and Jim went on a late morning bike ride (Charlie had slept in) after which eating ice cream (or rather, something like ice cream made without dairy products, which are not for Charlie) straight from the carton while watching YouTube was a highly preferred activity. The steaminess seemed only to worsen as the day progressed and we headed for the YMCA to do "swim and gym."
As we walked in I glanced at the pool and saw that it was divided in half with a lane marker, and that five chartreuse shirted teenagers were sitting on a bench. Prior visits had taught me that the five were camp counselors and that the right side of the pool, where Charlie habitually gets in, would be "off limits" unless you were a camper. Also, the pool toys that Charlie loves--a floating airplane and a car---were on the campers-only side of the pool.
Charlie, as expected, walked to the right side of the pool, stood and looked around, and got in. I paused and then went over to the counselors, mentioned Charlie and autism and how he's used to swimming on that side of the pool and that I would try to get him to swim on the other side. "It's fine for him to swim here," said the counselor, adding that there were only a few campers today.
Charlie had gotten into the water and was making his way towards the airplane, grinning from ear to ear (literally). He spent the next five minutes trying to pull himself up onto the back of the plane as a boy some years younger was trying to climb on its side. I stood watching as the airplane tipped over when both boys were trying to climb on it simultaneously from different angles. Charlie looked a little annoyed at one point but just kept trying to get on until the other boy who drifted off. Charlie then gave me a look and a "yes" when I asked him if he wanted me in the water. I helped him push the airplane to the deep end and he spent a half-hour kicking and floating while I did some laps.
As 5pm approached, everyone got our. A lifeguard told me that it would be adult lap swimming soon. I noted that Charlie might take a little longer to get out and she said, no problem. Still on the airplane, he kicked back to the deep end and turned around. One of the pool managers was pulling the other toys out of the pool. I remember when she was a lifeguard in the days when Charlie had to go down the pool slides at least two dozen times per visit; she always gave him a smile and laughed to see us at the top of the stairs, yet again. Since then, we've often seen her and noted that she's risen in the ranks (to everyone's advantage---I've noted that she's always attentive to both the staff and to swimmers and parents, and very polite).
The pool manager asked me to unwind a rope that had gotten caught on the lane marker. I did so and then swam to the shallow end and got out of the pool. Charlie was still floating around on the airplane and kicked his way in slowly. He got off (deplaned?) and was wading towards the stairs, leaving the airplane in the water.
"Charlie, can you get the airplane for me?" the pool manager asked, squatting at the side of the pool and looking at him. And Charlie turned around, took hold of the tail of the airplane, and pushed it to the pool manager who thanked him.
I gave Charlie a big smile and a towel. Lately, he doesn't seem to like excessive displays of praise as we used to do when he was younger and tossed him in the air, clapped and chortled. It was just a small instance of him following directions, after all.
And how the small things do add up.
The Hawai'ian
Published July 12, 2009 @ 12:48AM PT
The original title for this post was going to be "never say never" but the above title just seemed more apropos.
42 inches is equivalent to 3 1/2 feet. And 42 inches is the size of the boogie board I was hastily dispatched to purchase, per Charlie's request yesterday while we were at the beach.
For several years, we had three boogie boards, a big blue one (I suspect it was 42 inches; can't remember) and two smaller red ones (35 inchers, most likely). We'd bought one red one at a beach variety store: Last summer, it was thin and faded and cracking. The big blue one was without its strap, which had gotten detached for some reason or other, and then promptly misplaced, as have many things in our back-and-forth visits to the Jersey Shore over the years.
As regularly chronicled since I started blogging in June of 2005, my son Charlie adores the ocean. He first dipped his feet in the Atlantic when he was about six months old back in October of 1997 and, except for the summer of 1998 when we moved from St. Louis to St. Paul, we've taken him to the ocean and, specifically, the fabled Jersey Shore. Charlie has always loved the water. He doesn't run in fully clothed (as he did into Lake Excelsior in Minnesota on the 4th of July in 1999) any more, but he's clearly most at ease and just in his element in the water, and most of all in the ocean. Charlie was 6 when he learned to swim in a local swimming pool but he'd been in waves over his head since he was little courtesy of Jim's arms and back.
Around that time we got that red boogie board and Jim held Charlie in the surf and tried to get him onto the board, held by me. Holding onto a wet board in salt water waves with other people splashing and running around and squealing and yelling and potentially crashing into you with their boogie boards---this is definitely an activity involving a fair amount of gross motor planning. In those first days of boogie-boarding, Jim pulled the board by the strap or held the board with both hands and walked backwards, while I followed and helped Charlie regain his grip or scooped him up when he slid off. Sometimes Jim would drag Charlie-on-the-board out into the waves and try to give him a sense of how it'd feel to get a ride. Slowly, slowly---and buoyed by the kindly encouragement of others (one New York City firefighter in particular)---Charlie was able to hang onto the board.
Dancing and Arts Education
Published June 19, 2009 @ 04:00PM PT
In Glendale (CA), a dance for autistic teens was organized. The purpose of the dance? It sounds from the article like the answer is "fun."
In Sherman Oaks (CA), a prom for autistic teens was organized, including dance lessons preceding it. The purpose of the prom? Fun, yes, but also learning, "Music and dance can be useful educational tools to help students acquire social skills and further develop awareness of self and others." A bit brittle that, but there are other educational benefits from the art of course. Quotes from some dance-goers:
"Prom was fun," said student Andre. "I danced all night -- now that I know the moves. Dancing allows me to express myself and it makes me feel so good. I feel like nothing can stop me while I listen to the music."
Corde, a graduating senior, expressed a sentiment that captured how many of the students felt about their dance lessons leading up to the prom, "Dancing is fun -- it's energizing. Every time I dance I feel a sudden explosion of energy and it makes me feel alive."
I am reminded of Kristina's post on the arts in autism education. An issue that is truly not confined just to autism education, but applies to education for all students. The arts are typically the first things cut from schools when money gets tight, the educational power of the arts being often underestimated. The quotes from students above are ones that any student might say, or any person really who enjoys dance, or whatever other art form makes them giddy.
