Charlie playing flag football?

In Pennsylvania, Bob Wargo runs a flag football program for special needs kids, each of whom is paired with a high school football player, as noted in today’s Phillyburbs.

Well, Charlie is getting a strong set of shoulders and earlier today we went for a walk up a long and steep hill; he ran in front (yes, ran), bent over horizontal and going full speed ahead……….

Sports “tap into an autistic person’s basic needs for social and physical interaction and participation in purpose-driven tasks,” according to Chantal Sicile-Kira, whose autistic son is an adult and who’s written three books on autism. Sicile-Kira is quoted in an article in today’s Orange County Register about the first school-district sponsored sports league for autistic children. The league was started by Kathy Murphy, a speech language pathologist at Harbor View Elementary in Newport Beach; soccer, T-ball, and track are offered. No one keeps score and, during a soccer game, “……everybody, no matter what team they were aligned with, cheered when a player found the back of the net.”

My son Charlie’s been in Challenger league t-ball and tried soccer and basketball for special needs kids. One of the main challenges for Charlie is the ball—-keeping track of it, knowing what to do with it, not to mention catching and throwing; bowling’s been a bit easier as it’s simply a matter of getting the ball and rolling (dropping) it down the bowling lane. Add in several other children running or standing around and various teachers and parents also on the field and it’s even more difficult.

There’s no denying the need for regular physical activity for Charlie (he and Jim just came back from a December bike ride), and Sicile-Kira’s quote rings true to me. At school, Charlie doesn’t find it easy to have to sit for so much of the day. His teachers had been taking him outside for walks but after he got upset suddenly, seemingly, last week, there’s been much more hesitance to take him out. He’s been walking in the hallway, which of course is not the same as getting outside and into the fresh air. (Yes, I’m trying to see what’s going on with this; walking outside is a frequent activity that Charlie does with us.)

At a time when one hears more and more about closures and budget cuts, asking for a sports league for autistic kids is not going to be easy. But in this case, the benefits, I would say, are not to be missed.

20-year-old Alex Bain of Prince Edward Island has been named one of the most inspirational runners in Canada—-here’s the write-up in iRun and here’s more on the Runman blog (where you can leave a message if you’d like). And, here’s CBC News.

Go Alex!

4 hours 49 minutes 20 seconds.

That was Jonathan Brunot’s time in this year’s New York City Marathon. Today’s New York Times details how his race went:

Jonathan aced [the NY Marathon] Nov. 2 on his first attempt in 4 hours 49 minutes 20 seconds, including timeouts for a slight tantrum at Mile 22 (he refused to drink his PowerGel beverage), a slight leg cramp at Mile 23 (payback for not hydrating) and a slight fumble near the finish line (he paused to wave and scream and applaud himself when he caught sight of his tearful mother, Olga, in the bleachers).

Jonathan doesn’t know he didn’t quite nail Mr. Del-Cid’s goal of 4:30. He also doesn’t know Mr. Del-Cid’s goal for 2009 is for Jonathan to run the marathon in under four hours. Time and goals are irrelevant concepts to him. But he will surely recognize the race: It’s word No. 14 in his lexicon. “Vincent,” and “to run” are words Nos. 11 to 13.

Jonathan dressed himself in running gear and bolted down two bagels before the race, and he heard, parroted and retained a complicated new word: marathon. Or, as he gleefully mispronounced it the other day, “Malathon, malathon,” while squirming self-consciously next to his coach on a sofa in the home he shares with his oft-exhausted parents. They double as his 24/7 caretakers. Though he is much less exhausting since running liberated him and, in a sense, them.

(”Maraton” ’s the name of a Korean movie based on the true story of Bae Hyong-Jin, who’s autistic and who’s a marathon runner.)

And, Jonathan’s father, Dr. Verlaine Brunot, is “so convinced of the marathon’s positive impact on Jonathan that he is training him for the bicycle phase of an Oyster Bay triathlon.”

Think Charlie may have to join Jonathan in training for that someday—–he and Jim were out on their bikes for over 2 hours today (minus the time for a snack stop).

Yes, I overparent.

It often seems to me that it’s harder than not to do this when you’ve a child with a disability. In yesterday’s Arizona Daily Star Johanna Eubanks writes about the ongoing difficulties that she, and other mothers of autistic children, have to take time for themselves; to take care of themselves.

Of course, there are marked differences in the overparenting I’m talking about, and the “helicopter”/”hothouse”/”death-grip” parenting parents who aim every effort from pregnancy on to making sure their child will be material for the Ivies as described by Joan Acocella in the November 17th New Yorker. Overparenting is kind of a way of life around here, whether in directing your every energy to taking care of a disabled son whose communication skills are—-while better with each day—-minimal and not always verbal; in writing daily emails to his teacher to explain all the things that he doesn’t; in strategizing how to spend another long afternoon together in a (hopefully) at least semi-productive way.

Again, I’m not sure I could adequately take care of Charlie without being over-scrupulous, closely considering (if not obsessing) about minute details of his education, health, reactions to food and things that happen, sounds, the weather. Like many parents, I simply feel strange and always keep turning around, keep listening for a certain warbler voice, when Charlie is not with me, as if I’ve developed a sixth sense, a radar, that hones in immediately to where he is and how far or near.

One of the few places where I’m able to let that high-intensity parenting state subside a bit is when Charlie’s in the pool. Wednesday afternoon, we’d first gone bowling and—it was just past 5.30pm—-it was already totally dark. Soon after we’d gotten home, Charlie appeared from his room in his swimsuit and told me, with a smile, “black car.” The only other personswimming in the double-laned family/free swim section of the YMCA pool was an adolescent girl who was doing partial laps of freestroke and backstroke while her mother gave suggestions from a bench.

Jim’s often said that Charlie’s safer in the water than on land and this just seems to be more and more true. While I used to have to tail Charlie (so he wouldn’t swim into the lanes where people were doing laps), I usually go about my own business of swimming laps. Charlie likes to take his time to get into the pool and then (of course, there’s always lifeguards watching) do his own thing. So I go up and down and up and down the pool while he’s ducking under the water, backfloating, swimming half the length of the pool in no time at all, all with a kind of effortlessness in his movements.

Charlie’s not swimming to practice for any competitions. We swim because we like to. Further, the fact that I can swim is, perhaps, a by-product of (over)parenting Charlie. Before Charlie, I hated swimming and was terrified of being in water over my head. Because of Charlie, I learned to swim in the indoor pool of the town we used to live in. Thanks to Charlie, I can do something, swimming, that I spent the better part of my life avoiding and fearing and that I now not only enjoy, but thrive on.

Maybe it’s ironic, but the pool is, indeed, the one place where I’m not the over-parent, but just another person in the water.

I’ve become rather obsessed with exercise—-no, I’ve not become a calorie counting fiend tracking the minutes on the treadmill. It’s making sure that there’s enough physical activity integrated throughout Charlie’s day in general and at school in particular that have preoccupied my thoughts. I’ve noted that the very layout and physical space of his middle school classroom are very different from the windowed, light-filled classroom of his elementary school last year; the fluorescent lights just seems to buzz and glow more harshly.

Charlie has gym every morning around 9.30am. He has a locker now and has to change into and out of his gym clothes. The adapted physical education (APE) teacher has put together a very fine schedule of activities including soccer, yoga, volleyball, aerobics, and (though not skateboarding, as at this school), golf. (And Charlie got a hole in one the other day, his teacher noted to me.) One doesn’t want to ask for too much but, well, gym at 9.30am means that the boys in Charlie’s room get in their workout first thing in the morning and then….that’s it.

Because, there’s no recess in middle school.

And, there’s no playground in middle school.

And you’ve four growing boys who’s always had a need for jumping, fidgeting, being in motion, and can’t always tell you that’s what they need. In their elementary school, they had scooters to ride and someone left behind a bike that fit Charlie perfectly; he used to ride it around the school with an instructor running after him (and enjoying every moment of it—-Charlie’s not the only one who relishes getting outside the classroom). Charlie’s in a self-contained autism classroom with the same three boys he’s been with for two years and with a teacher who’s thoroughly up on their learning styles, past histories, communication needs. But it’s middle school, with expectations of being “more mature,” rules and dictates for discipline—-walky-talky bearing administrators roam the halls, not students—-and the difference from the sun-lit corridors of Charlie’s old elementary school, with PTA parents bustling around with plates of cookies, are palpable.

Charlie’s teacher, recognizing the need of all the kids to be in motion, is wondering about getting access to a treadmill and/or exercise bike. For Charlie in particular—as noted, he’s the biggest kid in the class (and the youngest) with long arms and lanky legs to throw around—-Jim suggested that he get a chance to be in motion as much as possible, and Charlie’s teacher has been having Charlie get out of the room and walk. Since it’s gotten cooler, most of this walking has been in the hallways. Fortunately, it’s a big middle school with over a thousand students (which in itself must be something for Charlie to get used to—-being in a building with over a thousand other kids his age, not including numerous teachers, administrators, support staff………).

After some of “those sort of days” in October when I start reading Wrightslaw (obsessively, yes), and after a lot of discussion and some reaccessments on everyone’s part (teachers and Jim and me too) about how to change our approach to teaching Charlie, he’s had some solid days. He’s still adjusting to the middle school schedule: School is over at 2.30, but Charlie is usually “done” an hour earlier, and his teacher has been moving around his activities, trying new teaching methods, making suggestions to us and listening to our suggestions.

Just hoping we can keep doing the same as the year unfolds and that we can remember, staying in motion—-that’s the key. And there’s a lot of hope in the air here right now, and I think we’re going to take that and run with it.

The West Side News reports on the benefits of hipportherapy for disabled children; a friend’s daughter started this sport some months ago and has been enjoying it:

….[hipportherapy's] techniques involve more than just putting a child in saddle and walking him around a riding ring.

Participants ride forward, backwards, and sideways in an effort to strengthen different muscle groups and experience the horse’s movements differently.

Something tells me you can horseback ride on a Wii, or not?

Teachers at Patterson Mill Middle/High School in Maryland are using a Wii to teach autistic students sports, today’s Baltimore Sun reports. The teachers were able to purchase the Nintendo device through a grant; the Wii’s been incorporated into the students’ daily schedule. And, I know someone who’s planning to teach autistic students to use a Wii as her project for master’s thesis.

(Though I don’t think we’ll be getting one at home, preferring to stick to “actual” exercise (biking, swimming) rather than the virtual sort……..)

Effie Linares is 11 years old like my son Charlie. Effie lives in Modesto, California and is mainstreamed in a fifth-grade class; today’s Modesto Bee reports on how far Effie’s come from the time he was 3 years old and started doing intensive ABA under the Lovaas Institute. At 5, at the suggestion of the founder of the institute, psychologist Dr. Ivar Lovaas, the BBC filmed Effie for a 2002 program. There’s a photo of Effie and three friends accompanying the Modesto Bee’s story, and it’s noted that he’s not only mainstreamed, but also “plays sports at church, is learning sign language through Lakewood’s Sign Club and sings in the school choir.” The Modesto Bee notes some reasons for Effie’s progress:

First, his level of autism is such that the program can work. Many autistic children have severe behavioral issues and cannot function in regular classes. Some exhibit “savant” characteristics that enable them to absorb information in one or two specific areas of interest.

The Modesto Bee makes an unsubstantiated statement that “savants often are susceptible to emotional outbursts that Effie hasn’t had in years”; I’m not sure that’s exactly the case. My own son started intensive ABA under the Lovaas agency in 1999, when he was 2 years old and after some months. He learned a lot and loved his therapists, whose warmth and interest in Charlie was an essential reason for his doing well. But Charlie was still not talking after several months and, when we moved to another city (St. Louis), the supervisor in essence suggested we find another ABA consultant. The supervisor was thinking (we suspected) that Charlie was not going to be one of those kids who might “recover“and be mainstreamed.

This experience left us at least a bit ambivalent. As I’ve noted, Charlie seems to learn best when taught in an ABA format. However, ABA’s a very imperfect “science” and behavior therapy and Lovaas’s work itself have a very troubled history, as noted in an old post by Autism Diva. We’ve come to listen to any claims of “recovery” with several ounces of salt.

At age 11, Charlie is in a self-contained 1:1 student: teacher ratio autism classroom. He’s not mainstreamed in any subject though he would probably be fine sitting in a classroom of same-aged students, with an aide (Effie Linares still receives some assistance in his school). Charlie’s academic skills are not at the same level as his same-aged peers and he’s learning more in his classroom via individualized teaching. And he’s a success, able to go anywhere we take him, liking school and learning and people, and a really fun kid all around.

Another article, in today’s Newsday (Long Island), describes Children’s Athletic Enrichment, a program for autistic kids aged 3-8 that teaches them baseball, swimming and soccer and seeks to use “sports to expand physical capabilities and life skills.” (Here’s a PDF file about Children’s Athletic Enrichment.) The program was founded by John Crawley, who has an autistic son, and (from what the Newsday article says) uses some creative methods to help autistic kids learn to play sports (hula hoops help kids learn to wait and also to run the bases).

One of the goals of Children’s Athletic Enrichment is to “learn sports skills while putting classroom lessons into real-life practice - with the hope that some of the children will one day graduate to so-called ‘typical’ sports programs”—-this is great and commendable.  It has to be noted, that just learning to play sports to the degree that a child can, be active, like learning and being in school and with people and in the world: This is success.

Wishing Effie and Charlie and everyone a very successful school year!

It being the “dog days of August”; us being on vacation at the beach house; the 2008 Olympics taking place; Charlie being a boy who loves loves loves to swim—-I am indulging in making a bit of an Olympic (”citius altius fortius“).

More than a few people have said to me that life raising an autistic child is not so much a sprint as a marathon. In the beginning, after you first get the diagnosis, it feels that you have to run to your utmost abilities, until you’ve drawn your last breath and then still have to give it your all: So parents race to find out and try so many treatments and therapies for their child, so parents hurry hurry hurry and “give their all” to “recovering a child from autism.” You can read many an online (and book) account of children “recovered” from autism, often through various biomedical, alternative treatments. A recovered child, it’s suggested: Now those are parents who’ve won their event, who stand on the podium and get the gold medal of autism parenthood.

And then there’s “those others.” Whose children still have their diagnosis, still are in self-contained special ed classrooms with a 1:1 teacher:student ratio; who still need speech therapy and 1:1 care all the time. Who need psychiatric medications. Who don’t have any peer-aged friends. Who live with a list of “nevers” and “nots” that seems to only get longer as the days pass.

Yeah, no medal for us; no “history-making” records set for us—-yes, I’ll say it—-losers.

This is pretty pessimistic thinking of course, and not at all how Jim and I see our life with Charlie. I think I’m a mom who’s hit the proverbial jackpot for the proverbial gold: For the zillionth time, life raising an autistic son ain’t easy. But everything, absolutely everything, is better—shimmers gold—thanks to a boy named Charlie.

I have been noting Jim’s and my worries about Charlie in the ocean this year. He is a far better swimmer than both of us—Jim has endured a serious back injury—Charlie understands that he’s supposed to “swim between the flags,” but that doesn’t mean he always does this, and sometimes he can’t help drifting outside those boundaries because of the current. Today he got very annoyed at both of us for calling him to swim “over here,” and tugging and coaxing him in the lifeguard-designated swim space and I felt like such a nag.

But hey, that’s part of The Parenthood, right? Having to play The Bad Guy, the “cop,” the disciplinarian. Having to set limits and rules and boundaries.

Once upon a time, Jim and I would have thought, maybe Charlie will just ever understand what we’re telling him. Today it was so apparent that he not only understood the flag concept, but that he was peeved: Why couldn’t he swim where he wanted to? Isn’t one wave as good as the next? And Charlie really is such a good swimmer, sensing every wave as easily as breathing and just as at ease under water as floating on it; Jim and I are klutzy landlubbers, compared to the Kingfish. But rules are rules and, the ocean being the ocean, a parent must err on the side of caution, and so the glorious swim out to sea that Charlie wanted to undertake after the lifeguards had left was curtailed, and he was not happy and told us so in wordless ways.

Later on, after Charlie (very tired, and tanned) was sound asleep, we were watching Michael Phelps and Usain Bolt. We watched them win; we watched their cameras pan over to their mothers, screaming cheers and victory dancing in the stands. Most of us mothers and parents aren’t going to see our kids compete for Olympic medals but I know we cheer as less hard, we rearrange our lives in pursuit of something bigger, we give up so we can give all, we gain.

I see Charlie in the waves and I feel that glow of victory. Because we’ve, he’s, worked so hard and persevered; kept trying; managed to endure; simply glories to be in his element working his body through the water or on the race course, and beams with pride at what he can do.

This vacation got off to a slow start. But we seem to have hit a groove, found our pace, and are moving onward, faster, higher, and stronger, even at high tide in big and crashing waves.