The Luckiest Zip-Lining, Surfing, Boogie Boarding Boy in Town

You'd never know Leo hit an extremely rough patch last week if you only saw the great time he had this past weekend at his friend I.'s birthday party at AcroSports in San Francisco:

He ziplined! OMFG! And the graceful way he skipped down that trampoline -- I could watch Leo prance, all day.

The photo below doesn't quite capture the glee on our boy's face as he bounced and swung in the giant bungee contraption. (Better pix of Leo in our friend Chris's photo essay about how to talk to parents of kids with autism.) I'm so glad we went -- I was on the edge about Leo not being able to participate and possibly disrupting the party -- but I have learned to have faith in our boy's love of fun, and cupcakes (though the latter enthusiasm started to spiral toward the party's end, so we made a quick exit so as to be thought of as flighty rather than party-destroyers).

Leo also had a wonderful, wonderful time ten days ago as a guest of RideAWave.org, an all-volunteer organization that enables a day of full-on surfing, kayaking, and boogie boarding for kids with special needs like Leo, or completely unlike Leo -- doesn't matter as long as they're up for a day at the beach. Here's our boy rocking out on a boogie board:

All geared up and ready to go (in 58° F water, brrrr, but Leo didn't mind).

Beach Wheelchair! Like I said, EVERYONE got to go in the water. You hear that, Jennnyalice? Everyone.

And EVERYONE got to go surfing. Everyone.

Iz even found a way to keep Mali busy while Leo was hanging ten.

Smiling for the camera with his medal, and his friendly beach buddy John -- who stayed by his side all day and made sure Leo's fun was maximized. Lucky, lucky boy.

I would love to see a RideAWave-like movement happen at AcroSports -- they're a community center, after all. The AcroSports staff was great with Leo -- they treated him like any other kid -- but they don't appear to have dedicated programs for our kids. They also have to charge extra for large parties of kids with special needs because of the staffing requirements, and probably because of their tight not-for-profit budget. But could you imagine a full day of bungeeing, ziplining, and trampolining for all our kids -- free of charge, staffed by volunteers, and open to every single kid who wants to go? I think it's a matter of finding the right person to spearhead the project. If I could Madrox myself, I'd be on it. In the meantime, I think Leo will be returning to both places whenever possible.

Swinging Blindfolded

Together time!
Leo has three feet; I'm doing my best Jabba impersonation.

Leo was a happy, gleeful boy when I picked him up from camp today, and greeted me with smiles and laughs and hugs that were 100% reciprocated. His aide said his week was full of fun and activities, and he came home with a glowing report and armfuls of crafts -- as is the right of all summer campers. We immediately headed off for his favorite Indian lunch spot, where he got to eat his favorite naan bread and let me load it up with piles of spiced saag (spinach). We came home and busied ourselves with laundry and unpacking, snacks and swing time, and pleasant stretches of dual geek time on the couch -- Leo with his iPad, me with my laptop, Leo with his head on my shoulder, me soaking up his affection and basking in our parallel togetherness.

I also spent much of the day in tears. With great, big, body-wracking sobs and conspicuous eyeglasses wearing while running errands. Leo is not in a good space right now, not at all. It's soul-destroying to see Leo flail and fail and not be able to help him. It's just not fair to our sweet, wonderful boy that his communication impairments prevent him from being able to tell us what's wrong, what he needs, how he feels, or how we can best support him.

Right now the biggest concern is self-care. The kind that involves elimination. I sent him to camp with two extra changes of clothing and a request that his aide watch him closely for the subtle signs that I've noticed precede  his current accident pattern -- and picked up a boy who despite his aide's best efforts needed his laundry done three times and ended up in fucking diapers. Leo didn't seem to mind, and I don't care in general about having a ten-year-old kid in pullups as some of Leo's best friends still use them; that's just reality. I do care, mightily, about what wearing diapers means for my son at this point -- it means lost skills. It means Leo's five years of hard work have seemingly evaporated. It means staying home, missing activities, and missing outings. It means an irritating mom hovering all day long every day. It is a huge regression.

I thought perhaps the frequency of the accidents was a reaction to being at camp. But, no. Despite careful monitoring  and frequent prompted pit stops, Leo had several incidents at home today plus one in the car while we were running errands which is something he has not done, literally, for years. The car incident is what turned me into a human waterfall of fear and worry -- because what if the problem's not behavioral? What if it's something else?

What happened at camp was an extreme version of what we've been seeing at home and at school for the past few weeks. Seymour and I were fairly certain the messy new regime was behavioral, and have been working very hard to support Leo on that front (oh the cheering and reinforcements for successful sessions!). But his OT at school is worried that Leo's experiencing actual incontinence. Which would have to mean sickness of some sort. Which means more guessing, as Leo can't really tell us his symptoms other than "tummy hurts, want a wipe." Which means more flailing, this time in a medical and diagnostic setting. I'll do it, if Leo needs it, but he's going to hate any kind of medical probing.

His behavioral tics are also completely over the top. They were getting bad before he went to camp -- but now Leo is near-incapacitated by them. He can't stop shifting from foot-to-foot or needing to spin or touch counters or walls or (aiigh) people -- it interferes with his ability to enter a car and get in his chair, or take a seat in a restaurant, or use the toilet, or not piss off unsuspecting bystanders.

I am hoping that all of this -- the erratic elimination, the tics and repetitive behaviors -- are a side effect of Zoloft. We put Leo on the drug about two months ago, on his behavioral psychiatrist's advice, to see if it could (irony) help with the escalating tics and repetitive behaviors. When a low Zoloft dose didn't work, we gradually upped it -- which made the tics proportionately worse. And it might be a coincidence, but that's when the self-care issues got so much worse, too. So, on his psychiatrist's advice, we're gradually weaning Leo off the Zoloft -- but so far have only seen more deterioration.

Meds are the final get-me-a-punching-bag unfairness dose -- even our incredibly experienced behavioral psychiatrist. Dr. R, can only make educated guesses about what might help our son. Dr. R was right about a very low dose of Risperdal helping to control Leo's violence, but before we tried Risperdal we tried Abilify for the same purpose -- and it made Leo's violent tendencies much, much worse. My son's needs are pronounced, incredibly obvious, and far from unique -- yet for now their treatment is a mystery to the psychiatric and pharmaceutical industry.

So when Leo has bad days, and there's nothing I can do except reassure him that I'm here and I'm with him, I spend a lot of time crying. Mostly in the front seat of the car, and as silently as possible so that Leo doesn't have the additional stress of worrying about me being upset -- he's sensitive to his family members' unsubtle emotions.
 
I hate this. I hate being unable to help my son when he's so obviously in need. I'm swinging my parenting bat as hard as I can, but I might as well be blindfolded -- plus it feels like no one can tell me where the ball is. All I know is that, no matter what, I'm on Leo's team. And I need to remind myself that this game usually has seasons. This one can't end soon enough -- Leo deserves to resume his winning streak.

Three Totally Different Autism & Advocacy Posts

I was on a slightly guilt-tinged vacation this week. Couldn't you tell? (You could if you were expecting any kind of correspondence from me.) Seymour and the girls and I had a lovely time boating with Seymour's folks in the San Juan Islands while Leelo had the time of his life at camp (I'm picking our boy up this morning, the rest of our family remains afloat). Here are the three posts I sent hurtling out onto the internet from the boat:

On BlogHer: Why We're All on the Autism Spectrum (or What I Learned About Myself at IMFAR). Excerpt:

Being an autism parent has always been a convenient way to laugh off my social ineptitude. But what if I'm more than just quirky? I came home from IMFAR determined to explore the matter. The first thing I did was take the AQ (Autism Quotient) test. I was careful not to exaggerate my responses, taking the milder options when unsure. I still scored 32, above the test's threshold. What does this mean?

Some folks have complained that it's dismissive to claim we're all on the autism spectrum. Since I'm grumpy about no longer being on the high seas sans responsibilities or drinking 25 year old vintage port, I've been rather irritated by those comments -- and since I'm a rotten commenter I'm just going to repost my response here:

I think some folks are having trouble reading past the headline to the conclusion: the more information we all have about ourselves, the better.

And I don't think we're all a little autistic (or all a little bisexual, for that matter). I think those spectrums have poles, and while the paths between the poles aren't necessarily linear, we're all somewhere on them. My hope is that this [post] helps people think more inclusively about our commonalities as well as our differences.

I also posted twice on TPGA (the Thinking Person's Guide to Autism). First on Summer Strategies for Autism Families, whic was an update of my 2009 BlogHer essay When Summer is Extra Special. Excerpt:

The problem with mostly-mommy-most-of-the-time: Leo is used to 1:1 supervision and engagement all day long, and I can't possibly provide the kind of routine and stimulation he craves, no matter how many camps and grandparent visits his sisters get shuffled off to. I try to keep Leo occupied, and I have a lot of support, and having an iPad helps, but I still worry that -- as has happened in summers past -- it won't be enough, and Leo's behavior and abilities will keep disintegrating until school resumes at the end of August.

So, understandably, I'm scared of summer. But I also think it has a lot of potential. It won't all be minefields

I was surprised at how much I needed to revise the essay in just two years, in all-positive ways. Leo's behavior is on a such a more even keel (and I'm two years farther away from Leo's traumatizing -- for him and me -- wrong-medication winter of 2008), our boy has started traveling again, we no longer have to stake out his camp office overnight to get him a 1:1 placement, and damn, he's got that iPad. This summer should be a good one.

The second TPGA post (which just went live today) is a fascinating interview & conversation I had with Syracuse University's Alan Foley, on how he developed his excellent free app iAdvocate (did I mention it's free? Does your kid have an IEP? You need to download this app, now). Excerpt:

Part of the intent [of developing iAdvocate] was to help the parents who confront the [potential educators or administrators responses to parent requests] statements for the first time and completely shut down. We really want to help those parents get their feet in the door!

...

Also, the concept of an advocacy tool has been very interesting -- there are lots of other contexts in which there is an information differential or a power differential in which something like this could be useful, for instance working with immigrant families. I feel like we've developed a nice model.

Yet another example of how iPads and iDevices are so much more than AAC -- and are supporting children and adults with special needs in ways no one had anticipated. When are insurance companies going to start funding the devices already?

Off to pick up Leo from camp. Have a lovely weekend, folks.

Make a Difference for Autism Research, for Only $1

Seymour & Iz atop Orcas Island's Mt. Constitution

Just got the following press release from the Autism Science Foundation (whose cool shirt my husband is wearing in the photo above):

You Can Make a Difference With Only $1 (Yes, That's One Dollar!)

Can $1 really make a difference? You bet! Today the Autism Science Foundation is the featured nonprofit on Philanthroper.com!

Philanthroper has been described as the "Groupon" of the nonprofit world. Each day they raise funds $1 at a time for a selected nonprofit whose work they think is outstanding and today that's ASF!

Philanthroper is about group giving. If everyone gives a little bit it will add up to enough for us to fund another critical piece of autism research. All funds raised through this project will go directly to research.

Please donate $1 today [https://philanthroper.com/deals/autism-science-foundation] and then SHARE with all your friends. After making your donation, post this Facebook update or send an email to your family and friends. This is an easy and simple way to get even more support for ASF's work.

Wish You Were Here

It's always nice to chaperone the luckiest kids I've ever met.

Happy Fathers Day!

To my own wonderful husband, who is an equally wonderful father. I have no doubt our kids will spend their entire lives loving him and laughing with him, while all their friends will want to hang out with him -- as was the case for my own father, who I am missing so much today. No psychology needed to see the connection there, or remind me that I am doubly fortunate. I know.

We are off on a week-long adventure today - Leo is going to camp, and we are going to spend Father's day and then a week with Seymour's folks, on their boat (without Leo - which brings heart-reaming guilt, but I keep telling myself and anyone who will listen that if our boy's at camp, it doesn't matter where we are, and his boat excitement turns into cabin fever after 24 hours). Looking forward to a lovely week. With my husband.

The Cutest Singer in the World

Here's Leo performing Shoo Fly at yesterday's variety show at his school, which featured performances from the littlest students to members of the adult program (Leo and many of his peers will probably stay at the school ... forever).



Leo was awesome, don't you think? It's worth noting that he can sing much, much longer sequences than he can string together conversationally -- I've been wondering for just about ever if there's a way to use the former to build on the latter. Ideas?

Leo's sisters and three cousins were able to watch his performance, and they were very proud of him too, as was Jennyalice (whose Jake was the cutest bumblebee ever).

My favorite moment of the show was when one of the show's star teen performers came and sat next to Iz and her equally suddenly leggy cousins. He was quite charming. "I'm happy!," he told them, then "I'm hungry. Are you hungry?" The girls admitted that they were, and that was the extent of the conversation, and cheerfulness continued to reign. No one ever mentioned anything odd about the exchange -- they said afterward that they thought he was really nice. Chalk one up for autism acceptance as a matter of course -- as nothing worth mentioning, even. Except for by this ever-vigilant and very proud -- in more ways than one -- mother.

I love Leo's school (and staff) so so so much.

Poke Me: Yet Another App Leo Loves (and It's Free)

See that cute purple monster? LEO LOVES HIM. Said creature is the sole protagonist of Poke Me, a currently-free app that lets you poke and feed the monster to see how it reacts -- glee, nomminess, or mild chastising (with amusing sound effects). You can also guide your critter through three simple environments - home, the moon, under the ocean. You can buy one 99c optional environment -- a treehouse, which made Leo giddy (he loves putting the wee monster to sleep in his bed).

Here 's what the developers have to say about Poke Me:

This app is a work-in-progress. We are at work adding content, levels and interactivity to the game! Until it is complete, Poke Me! will remain basically free and we hope you will enjoy the little bit of fun we have here now.

...but since they wrote that more than six months ago, in November 2010 (an aeon in app development), I suspect this app will be free for some time.

---

Speaking of free apps, today is World Underwear Day!, and you can download Todd Parr's cute, silly, and bumptuously fun My Underwear app for free. What are you waiting for? Go play with your underwear!

Talking About TPGA, Autism Acceptance, & iPads With Health Central's Jeremy Shane

One of the pleasures of IMFAR was meeting HealthCentral's Jeremy Shane in person after corresponding online, and I was honored when Jeremy asked to interview me. The interview is broken up into three segments, each with the same intro about me and Leo.

The first segment is on how the Thinking Person's Guide to autism website and forthcoming book provide the "crash course" parents of kids with new autism diagnoses need (and which doesn't currently exist), and also addresses the importance of finding positive role models, community, and information as soon as possible after an autism diagnosis:



The second segment is on accepting our children for who they are; and on steering clear of negative parenting attitudes, and flawed information on matters like vaccines:



The third is about iPads being so much more than AAC devices, and how much I wish experienced app developers would work with experienced autism and special needs professionals to create the ideal apps for Leo and our community. I also talk about the need for parents to continue broadening their perspectives on what it means to have autism by reading sites like Kristina Chew's blog at autism.typepad.com, about parenting a teen with autism, and through watching movies like Todd Drezner's Loving Lampposts.

Mali in NYC

You'll notice they're wearing the same expression.

More dispatches coming, though I've been tweeting lots of pictures if you'd like to see what we've been up to so far.

IMFAR 2011: Hat Tips & Memories

I had the best time ever at IMFAR 2011. Apparently people with autism and people who are related to or interested in people with autism are ... my people. Apparently I like nothing more than being freed from the tyranny of small talk while surrounded by unabashed, voluble enthusiasts. Though the frenetic information download pace of the conference itself had me cycling into euphoria then crashing from overwhelm several times each day, these folks made the experience more than worthwhile. (My IMFAR conference and session dispatches can be found at the Thinking Person's Guide to Autism.)

Alison Singer and the Autism Science Foundation provided the travel grant that allowed me to go to IMFAR in the first place, plus an extra-comfy ASF t-shirt that my husband openly covets. It was great to finally meet Alison in person, and staffers Jonathan Carter, Dawn Crawford, and Max Rolison were helpful and cheerful company. I'm additionally grateful to the ASF for facilitating the press pass that gave me leave to hide in the Press Room whenever IMFAR overload shut me down.

Due to a series of coincidences, Matt Carey was my mostly conference companion. He was kind, wry, and every bit as smart in person as he is online. Those who know him from his serious LBRB writings may be surprised to read that I had to beg him to stop making me laugh so much, as one of my sensory issues is a marked aversion to snorting food or liquids out of my nose.

Our ASF Travel Grant compatriot M. C. (Shidash) was also the kind of company I enjoy -- not just smart, not just enthusiastic, but with a marked sense of purpose and community. Plus an appreciation for cheesy toast and cool hats. And hermit crab rights. And service dogs. And app development.

Steve Silberman was the source of many intense, intense, rewarding conversations and ever so many great stories. He's really f***ng cool. I believe I still owe him a round of drinks.

Stephen Shore was only onsite for part of the conference, but radiated pure kindness. It was great fun to watch him tickle the digital ivories on Leo's iPad piano, and I do so wish we lived within driving range so he could help us suss out a way to tap into Leo's musical talents.

John Elder Robison is one of the most effusively inclusive people I've ever met, and was the catalyst behind many impromptu IMFAR social events. Conversations with him about the complexities of motivation, agenda, and community (and also about the Morganza spillway) were enlightening. Did you know his legs are twice as long as mine plus he has twice as much energy? I found this out when a group of us scoured downtown San Diego on a dinner quest.

Alex Plank is as charming as you might suspect from his WrongPlanet.net interview series with John Robison's son Jack. He also had the most deadpan sense of humor onsite. He and his WrongPlanet crew AJ and Noah plus Susan Levy (a force in her own right as well as a compelling conversationalist) were busy busy busy throughout the conference, shooting and editing IMFAR video highlights and interviews.

As I wrote on Thinking Person's Guide to Autism, I was pleased to witness Autism Speaks funding so much of the promising research presented at IMFAR. AS spokespersons Ali Dyer and Peter Bell made real efforts to reach out to stakeholders, which was appreciated.

I was also extremely grateful to my Thinking Person's Guide to Autism team members who couldn't come, for various reasons --  yet were present in spirit, via email, Twitter, text,  and phone. Jen Myers stayed on top of what became a rather frantic TPGA book cover design process -- it is so gorgeous, can't wait to show you all; Emily Willingham fielded my calls about approaching researchers who presented questionable poster material even though she was in the middle of moving; Liz Ditz monitored and reported on the five- or six-ply IMFAR information streams and tweeting topics I both did and did not get to; and Carol Greenburg propped me up and kept me going via email reassurances when that conference overwhelm spiraled from mildly amusing to legitimately distressing.

Final thanks to Seymour and the kids for the indulgence of five days away from home, and also to my mom for letting me stay with her during the conference. Not only was my mom the best company of all, but staying with her meant coming home to this view every night.

Grateful, grateful, grateful.