Thanks For Making Me Cry, Ride a Wave

Let me wipe off my still-foggy glasses and explain why that title may not mean what you think it means.

This past weekend, Leo participated in Ride A Wave—that glorious all-volunteer supported and inclusive surfing, boogie boarding, and kayaking extravaganza for people with disabilities. For our dude, this yearly "going surfing" is an annual immersion in bliss.

While Leo looks forward to his yearly Ride A Wave day for months, this time he was so excited that he woke up several hours before the morning fun started (props to my tag-team partner Seymour for being up for those several hours; Leo's boundless energy and stamina are ideally matched to companions who have had a full night's sleep).

Leo sang happily as the two of us drove to the beach (Allan Sherman's "When I Was A Lad," "Early One Morning," and "Baby Beluga" are currently on heavy rotation.) Once we arrived at the Santa Cruz Wharf, we were paired with the two volunteer "Buddies" who became Leo's support team on the beach—helping him get into his swim suit, signing him up for events, whooping it up every time he caught a wave. The Buddies tend to be good eggs, but these two were especially great: intuitively following and respecting my cues about interacting with Leo and keeping him safe—and reciprocating the happiness Leo exuded all morning long.

As I told one of his Buddies, getting to spend the morning watching Leo in a state of perpetual delight because of people who not only volunteer to help him have the best day ever at the beach by his definition, but who are as happy for him as I am, is the emotional equivalent of a spa day for me.

But that wasn't why I cried.

Again, let me explain. We've always had a great time at Ride A Wave day; Leo because I'm fairly certain he's a selkie, and me because if my kids are happy then I'm happy. But this year was a special one.

You will need to take my word for what happened as I didn't snap that many pictures and didn't get video (for once, trying not to let my camera get between me and being in the presence of awesomeness), but what the photo below shows is Leo surrounded by a squadron of young wetsuited surf buddies. And what you really can't see is that Leo is doing what he loves the most—bobbing and pogoing in the water. And what made me cry is what happened next.

[image: Photo of wetsuited Leo and with a circle of wetsuited
tweens, with a boogie board, in waist-deep ocean waves.]

All the surf buddies spontaneously bobbed and pogo'd with him. Not because anyone told them to—there were no adults or coaches out there in the waves—but because they were in sync with Leo and going with his flow, so everyone was caught up in his irrepressible joy.

Cue my sobbing (while pretending not to be).

That's all I want for our sweet, wonderful guy—for other people to respect how he moves through the world, and approach him without hesitation or awkwardness or pity. I want him to know, viscerally, what it's like to be plugged into that kind of spontaneous human synchronicity. That way, when he encounters people who are yet again awkward, or unkind, or patronizing, he understands that it does NOT have to be that way, and he does NOT have to put up with it. Because he's experienced the way he should be treated, and he know's that's an achievable reality.

Explaining this to his buddies on shore while trying to pretend I wasn't crying was not entirely successful, so I'm telling you, now.

----

Coda: Leo also got to meet Spiderman during this year's Ride A Wave. For a Spiderverse fan (who also likes to sing "Sunflower," now that I think about it), that's a green straw-level bonus on a day that was already as great as it gets.

[image: Leo fist-bumping Spiderman at a beach.]

Visiting Zion National Park While Autistic

Because I am very smart, it only took me ten years to realize that Zion National Park is a mere three-hour drive from Las Vegas, where we often stay with family. For us, that's day-trippable. I wasn't sure if Zion would be an ideal place for our team, but as last week was Leo's Spring Break, we were looking for new adventures, and our friend and fellow road-tripper Dr. Deb Karhson was game, we decided to see if Zion was our kind of place.

Oh yes, it was.

First of all, we are all about Transportation Days. If we can spend a day riding buses, trains, subways, ferries, boats, trams, and/or cable cars, that is a day in which everybody wins. And Utah's town of Springfield, AKA the gateway to Zion NP, has a clean, efficient, free shuttle bus service. Yes! We won! (Parking in Springfield was not free, but it was not exorbitant either.)

[image: Deb Karhson, me, and Leo riding the free shuttle bus
from the town of Springfield to the Zion park entrance.]

Another reason we were heading to Zion is that it is in fact a National Park. And people with disabilities can get life-long free Access Passes to National Parks. And I thought Leo should have an Access Pass. So I brought all his documentation—birth certificate, passport, diagnosis paperwork, most recent IEP, etc., to prove that yes in fact, our dude is who he says he is and yes, he is disabled.

Turns out the ranger believed Leo without any of that, and just needed him to sign his name (and waited without comment or prompting during that process, which for our dude takes as long as it takes). OK then! Now Leo (and anyone who comes with Leo) can get into any national park, and can even get the car that Leo rides in, into those national parks. I think the Access Pass is an excellent program and I am grateful for it.

We then headed to the next part of our excellent day, the Zion NP free shuttle, which takes visitors to nine different parts of the canyon, with on/off privileges at every stop. Except, d'oh:

[image: Leo next to a very long line of people waiting to board the
Zion National Park free shuttle bus.]

We were there on the Friday before Easter Sunday, which turned out to be a Really Busy Day. The rangers said they had Summer attendance but Spring staffing and shuttles, so we ended up having to wait for 30 minutes to board the bus. Thankfully, waiting for a bus is a perfectly acceptable way to spend one's time, according to the teenager in our group. Whew! 

We then rode up and down the canyon, possibly more than once. We got off the bus at Zion Lodge and poked around a bit, but we'll need to go back again to get our usual hiking on—the crowds made the trails inaccessible to our party, for various sensory reasons. The crowds also made for waits at many of the shuttle stops, which could have been an issue if we had had a crisis and needed to board right away, as the park has no priority boarding policy for people who have a hard time with lines. I look forward to heading back on a less-bustling day.

But, damn, Zion was so beautiful. The temperature was warm but not intolerable, flowers were blooming everywhere, and the skies were as blue as any I've seen. I did not even try to capture that beauty, as it is staggering on a scale incomprehensible to my puny camera phone. Let's just say that there's a reason there are windows in ceilings of the buses. You should see Zion yourself if you can, or watch a dedicated video.

[image: Leo from behind, looking down the Virgin river, from a bridge.]

Also note that there were lots of places to rest and chill, even with the crowds. Benches and lawns and more. This is important for our crew, which requires downtime. Also important: Water fountains and spouts with tasty, clean Zion spring water everywhere. Don't forget to bring your reusable water bottle!

[image: Leo and me lounging on the lawn in front of the Zion lodge.]

And finally, we were glad to have Deb along with us. I think sometimes Leo gets bored of me, as teenage boys tend to do with their mothers, plus Deb is the least boring person on earth and Leo loves her (as do I). Also Deb says she misses her brother, who lives in another state, and who is a lot like Leo. Then there's that Leo's dad doesn't like the two of us traveling by ourselves, but there aren't a lot of people who think traveling with us for a few days is a vacation. So, more gratitude on my part. Thanks, Deb!

[image: Leo and Deb on the grass at Zion Lodge, seen in
profile. Deb is cupping Leo's cheeks and he is smiling
at her.]

If you or your family member are autistic and/or disabled, and you've been to Zion, I'd be interested to hear about your experience. For now, I can report that we had a wonderful time, and I am raring to return.

The Way the World Should Look: Magical Bridge Playground Comes to Redwood City

Last week my town held the groundbreaking ceremony for its own Magical Bridge playground. This is a big deal, not just for Leo and our family, but for every local with a disability who has ever felt unwelcome at, or been unable to access, the casual, fun neighborhood playgrounds and parks experience that most other residents take for granted. This is inclusion done right.

If you're not familiar with Magical Bridge, you probably will be in the near future: The Magical Bridge Foundation is creating and deploying all-abilities-and-ages playgrounds right here in Silicon Valley. And when all goes according to plan, their ideals and examples and playgrounds will take over the world! (If you want to be part of this master plan, the best option right now is to help bringing Magical Bridge playgrounds to Sunnyvale and Morgan Hill.)

Since my crew and I are locals, the Magical Bridge power duo of founder Olenka Villareal and co-founder Jill Asher asked me to be one of the folks who gave short speeches during the ceremony. Here's what I had to say:

"Hi, I’m Shannon Des Roches Rosa. I’ve lived in Redwood City since 1994, and I’ve never wanted to live anyplace else in this region. My husband and I have three kids, all of whom went to Redwood City schools, and participated in the coin drives that helped make our Magical Bridge playground happen.

Actually giving this very speech. Photo © Elaine Park
[image: Me at a podium in a park, talking with my hands.]

My middle child, Leo, was diagnosed with autism when he was three years old. And, as he got older, it became really obvious that the parks that he loved, like Maddux Park—where his big sister has a tile with a print of her baby-sized foot in the wall, and Stafford Park, and all the other wonderful parks in Redwood City were no longer as welcoming as they used to be.

Leo at Magical Bridge in Palo Alto, with Jill (L) and Olenka (R)
[image: Leo happily sitting in a spinning playround pod, between two
blonde white women wearing blue Magical Bridge t-shirts.]

"It’s hard, when your kids are different, or you’re different: sometimes other people are uncomfortable around you. And nobody wants to be around people who make you feel bad. So after a while, we started to spend more time at home, or would only go to parks and playgrounds when we knew no one else would be there. My son is a high-support mostly non-speaking guy, but he is amazing—and amazingly physical, and he always wants to hang out, run around, and play. So imagine my surprise and delight in finding out about Magical Bridge.

My kids Leo and J. playing together (!) at Magical Bridge Palo Alto
[image: Small white girl pushing a conical merry-go-round on which
her brother is lying down. Both kids seen from behind.]

"The first time I visited the Magical Bridge Playground in Palo Alto with my kids, I almost couldn’t believe that a place like it existed. And that’s not just about its accessibility: It’s not about the fact that everybody can play; it’s about the everybody does play. It’s the fact that, when I’m there, there are kids who don’t have obvious disabilities like my son does—but they will talk to him. They will take turns with him. And sometimes, we’ll realize that a few of them are part of our autism community, because they’ll want to talk about every single category of Pokemon for five straight minutes—and that’s great, too!

Leo at the Magical Bridge 2017 Halloween Party. We would *never*
go to a playground this busy, if it wasn't Magical Bridge
[image: Leo, wearing an orange-and-black Fred Flintstone costume,
seen from behind, swinging on a disc swing, at a crowded playground.]

"So I’m really excited about having a Magical Bridge Playground here in Redwood City because inclusion really matters. Because my son, and all of our friends with disabilities, whether they’re here today or not—they are human beings. With hopes, dreams, fears, and likes (my son is 17 years old; he likes Deadpool), just like you.

"But the fact that, so often, other people let disability get in the way of recognizing our shared humanity—that’s a problem. And that’s not something that happens when you have a place like Magical Bridge in Palo Alto already is, and Magical Bridge in Redwood City is going to be: It’s not about pity, it’s not about charity; it’s about making the world look the way it’s supposed to look—for everybody. And that’s why I just can’t wait until we have Magical Bridge here in our own backyard.

"Thank you so much, Olenka and Jill."

[video description: The Magical Bridge Redwood City speech-givers, doing ceremonial ground-breaking
by wearing hard hats and happily shoveling some dirt, in unison.]

Looming ACA Repeal: Why It Matters to Us, and How You Can Help

Leo: sleeping during a sleep study
[image: close up of a sleeping white
teen boy's hand resting on his chest,
with a glowing red oxygen sensor
on his index finger tip.]

Leo got up at 2 AM this morning, and never went back to sleep. Why? We don't know. Though he wakes up early a lot, he is also generally cheerful (and ready to party). Except for sleep deprivation on his parents' part, this is just the way things are in our house: Leo doesn't wake early on purpose, and he needs our support whenever he's on the move. (We are lucky: I work from home and can pick up nap slack if need be, and on weekends his dad and I tag-team.)

But we still want to know what is disrupting Leo's sleep -- even though we already know sleep disturbances are common for autistic people -- and if it is related to the daytime unhappiness he's been experiencing for almost a year. So we took him in for a sleep study last month, the last in a series of appointments with at least seven specialty doctors and four different scanning/monitoring procedures.

It's been a month since he did that sleep study at a local research hospital, and, according to his referring doctor (who referred him in August, mind you) the results won't be in for another week or so. I'm frustrated, because it's been months and we still don't have answers, but this is also just the way it is. Apparently the sleep study results reading backlog is huge.

Just the way it is -- and we have good insurance. And live in a major metro area with world-class medical options and facilities. And are part of a fantastic, responsive medical group. We are 1) lucky, 2) lucky, and 3) lucky. For now.

But what if the GOP's ongoing attempt to repeal the Affordable Care Act succeeds? Will that affect us? Even if it doesn't, we know -- for a fact -- that a repeal would affect many, many people with disabilities, and/or their families, not to mention far too many other Americans. According to Families USA, the Congressional attempt at ACA repeal is:

"...the biggest threat to the health care law that we’ve ever experienced. And the stakes could not be higher. All the gains we’ve made in expanding health coverage to a greater share of people and strengthening the health care system in America are at risk."

What exactly is at stake for Leo and other members of the disability community? According to NPR,

"[Before the ACA] insurers would cover rehabilitation to help people regain functions they had lost, such as walking again after a stroke, but not care needed to either gain functions patients never had, such as speech therapy for a child who never learned how to talk, or to maintain a patient's current level of function. The Affordable Care Act requires plans to offer coverage for such treatments, dubbed habilitative care, as part of the essential health benefits in plans sold to individuals and small groups."

So, losing the ACA will, for many, be catastrophic. But what can you do? If you need specific guidance or reassurance about how you can make a real difference, Kit Mead put together #SaveTheACA - Affordable Care Act Resources and Actions, which is a great resource list, with sections for:

• Direct action, calling, and sharing stories
• Tips for calling and contacting
• Background information 

And Naomi Kritzer wrote straightforward guidelines on strategic approaches to contacting your Congressional representatives, whether they are supporting policies you agree with or not, and without throwing other groups under the bus.

And if you don't have ties to the autism and disability community -- and aren't incredibly wealthy -- you should still be worried because The ACA repeal may affect you too:

Republicans’ planned bill to repeal the Affordable Care Act (ACA), which is expected to be similar to the repeal bill that President Obama vetoed in January 2016, would provide an immediate windfall tax cut to the highest-income Americans while raising taxes significantly on about 7 million low- and moderate-income families.

This is such a distressing time. (Protip: if the current state of politics is as dismaying for you as it is for me and you haven't watched the series Black Mirror yet? Now is a really bad time to start.) It is easy to feel like nothing matters and you can't make a difference -- but you can, and the best way to do it is to take action by contacting your senators and representatives. Even if you think it doesn't matter, it really, really does.

Please use the guides above to help you take whatever steps you can to #ProtectOurCare. And thank you. Especially if you'd rather be like Leo, especially if you'd rather Just Keep Swimming.

Leo blissfully hanging in a relative's pool on NYE. 
[image: white teen boy from behind, in a lighted-up pool,
at night, with city lights in the background.

Mali Asked Me What "Retard" Means

...because one of her friends at school uses "retard" as a casual pejorative. I suspect she already knew; she is nine after all. But this is an age where one's big kid ability to take in and process information is often at odds with one's little kid assumptions that the world is entirely a good, safe, and happy place. So here is what I told her:

'Retard' is a word used to make fun of people like your brother, people with intellectual disabilities. It is an awful word, and people who know better should not use it.

She asked me what to say to her friend, and I told her she could try the following:

1) 'Retard' makes fun of people like my brother.
2) So it hurts my feelings when you use that word.
3) So please do not use that word.

She'll be home in a few hours. We'll see how it went. And I think I'll have her watch the Not Acceptable PSA, even though it will further puncture her safe happy assumptions bubble.

What would you have said?

How iPads & Apps Can Help Autistic People Like Leo - As of September 2013

This is an outline for a three-hour iPads and Apps workshop I recently gave for the excellent San Francisco organization Support for Families of Children With Disabilities. The outline's backbone is consistent with many of my past presentations, while updated in several areas because things move fast in the iDevices and apps worlds. Case in point: the presentation was a few days before iOS 7 was released. (All I'll say about iOS 7 is that making things more subtle is not a great idea for visual people -- Leo is still having trouble opening his iPad, because he can't locate the swipe area. So while iOS 7 may be prettier, it's also less accessible.)

Oh, and I've also updated and verified all the apps & prices in our Recommended Apps Spreadsheet.

If you missed this workshop, I've got a couple other iPad workshops coming up, one local and one in the UK. And if you have any questions about the info below -- seeing as it is fairly bare bones -- do leave a comment.

Yes, iPads and Apps
Really Can Help Individuals With Special Needs
Support for Families \ September 14, 2013

Shannon Des Roches Rosa | www.thinkingautismguide.com | www.squidalicious.com

Leo tolerating post office lines and tedium,
thanks to his iPad.

Tablets: Tools, Not Miracles

• My autistic son was instantly able to learn and entertain himself independently [though, ahem, less so with iOS 7 redesign]
• However, tablets are not for everyone. Evaluate tables and apps before buying
• Tablets encourage presuming competence by enabling visual and alternative communication and learning
• Competence expressed and recognized increases self-confidence

Benefits: Accessibility and Convenience

•  No cursor analogy – direct touch screen
• Fine motor ease – stylus/mouse not required (and switch accessories now available)
• So very portable (but invest in a good case)
• Can replace backpacks – and cupboards -- of activities
• App content is not static, contents updates are often free
• Siri encourages independence and articulation (iPad 3+ only)

Benefits: Learning

• So much more than an AAC device!
  (Non-dedicated device status = issue, less so with Guided Access)
• Apps are organized, accessible, predictable framework
• Apps break learning down into discrete chunks, topic areas
• Learn without needing to read, including read-aloud books
•  Learn independently or with support (but monitoring important, with any kid)
• Incidental learning opportunities

Benefits: Social and Play

• iPads are cool, they attract other kids – including siblings
• Can support social skills, formally and informally
• Custom story apps allow preparing for transitions, routines, meeting new people –
  or re-experiencing said scenarios
• Face-blindness (common with autistics): labeling and other photo-content apps can enable associating names and characteristics with people
•  Independent leisure time: Learning activities, games, videos

Best Practices

• Evaluate thoroughly before buying: Tablets are expensive, apps are expensive
• Get professional evaluation for AAC apps
• Different systems work for different users
• If long-term AAC use is expected, do not want to re-learn communication system
• Get fully informed before upgrading, e.g., iOS 6 deleted YouTube app,

Overuse and Abuse?

• What about study: “Autistic Kids Obsess Over Screen Technology”? [1]
• Autistic adults say “Yes, we’re visual and very focused, why not explore how to harness these traits productively.”
• Savvy kids can be experts, help other kids, mentor them.
• For 1:1 kids, independent is good, not bad!
• Valid concern for those who need support to manage screen time

When iPads Are Not in Your Budget

• Go through insurance, school district – write into IEP
• AAC evaluation
• SLP recommendation
• Research (longitudinal studies are ongoing)
• Fundraise: Community/Online – it works! (Small commissions charged)
• GiveForward.org, Crowdrise.com, GoFundMe.com
• iPad Donation Charities – watch out for scams

iPad Protection – Insurance, AppleCare, Loss

• All iPads come with 90 days of phone support and one year limited warranty
• Insurance (3^rd party): Protects against damage and physical loss
• AppleCare: Service, support for technical issues, up to two years
• iTunes remembers purchases, will let you re-download for free

iPad Protection – Cases, Covers, Other Accessories

• Cases: Protection vs. Convenience
• All-Purpose Cases: ZooGue, Targus, InCase, Shutterfly (custom photo)
• Keyboard: Logitech, Targus, Zagg, Brookstone (can be bulky)
• Protective: Otterbox Defender, GumDrop Military, Trident Kraken, Griffin Survivor

Apps Demonstrated

Free: iAdvocate • Draw With Stars • MyScript Calculator • 30/30 • EveryTrail • NeoPaul
Customizable: Kid in Story •WordSLaPps • Popplet • Write My Name

Also: Dr. Seuss’s ABC • Toca Band • Puzzle Pop • Stack the Countries • TeachMe Kindergarten

---

[1] http://psychcentral.com/news/2012/01/26/autistic-kids-obsess-over-screen-technology/34118.html

Please, Disneyland: Do Right By Your Autistic Fans

Disneyland train! Disneyland train! (Feb 2013)

Update 10/5/13: Looks like the new policy will indeed acknowledge diversity in disability and offer differing accommodations as a result. Woot! So grateful and relieved.

Leo is singing a song about Mickey Mouse and Donald Duck right now, because all things Disneyland are never far from his mind. He asks to go to Disneyland every single day of his life, and if he hadn't been singing that song, he'd probably have been watching California Screamin' roller coaster videos on YouTube, or looking through pictures of his own 2011 trip to the Land of Mouse.

Leo really, really loves Disneyland. Really loves it. It is his happy place, one of the few places I know he will have a good time all day long, one of a handful of not-our-home places I feel fully comfortable taking him.

That is why I am so downhearted about the recent announcement that the park will be discontinuing the Guest Assistance Card that made Leo's trips to Disneyland possible. If Leo doesn't have a GAC, we can't go. End of story.

I've written about Leo's adoration of The Happiest Place on Earch before, and why the Guest Assistance Cards matter.

Leo's visit was a huge success, and Disneyland turned out to his Land of Yes. He got to do exactly what he wanted all day long, directing the action according to his interests and impulses -- an unprecedented freedom for a boy with a heavily structured life. He was also never bored, which can be an issue for people with communication challenges. Because of a Guest Assistance [Card] the Mouse thoughtfully provides for people whose behaviors make it difficult to wait in lines, Leo could get right back on any ride he liked, as many times as he wanted.

You have to understand: our love of the GAC is not because we get to skip lines and blow raspberries at all the chumps who don't. Skipping lines is not a convenience but a necessary accommodation for our boy. Because he is autistic. Because of his specific disability.

Leo can wait in lines, but not always. Not lines of Disneyland length. Not without melting down due to the crowds, the noise, the expectation based on previous experience that he will not have to wait in lines longer than 20 or so minutes. Without the GAC, Disneyland is effectively barred to my son.

Even with the GAC, it can be difficult -- there is no GAC for park entry lines, so when those lines were longer than he was used to the last time we visited, Leo ended up having a spectacular meltdown. Please believe me, he really does need GAC accommodation; he doesn't deserve to be a public spectacle just because of his neurology.

I understand that Disney is planning an alternative to the GAC: the Disabled Assistance System (DAS), which includes a system of going to kiosks to get return times for the most popular rides. Which incorporates back-and-forth time for DAS users only. People with disabilities and their families only. Which means additional complications and fewer ride times for those for whom going to Disneyland is already much more complicated and so already includes fewer ride times.

I have heard from several different sources that Disneyland discontinued the GAC because people were rampantly taking advantage of it, either falsely claiming disability or in some cases hiring disabled people so their non-disabled kids could skip lines.

Happiest boy, happiest family (Feb 2013)

My reaction: So what? There will always be losers people who game accommodation systems. But in a fair and just society, you don't take away (or complicate) accommodations for people with disabilities just because non-disabled people are taking advantage of them and making other non-disabled people mad. Especially as I've never heard from any of our Disneyland-loving, GAC-using friends about being disadvantaged due to too many other GAC users.

There are so many other things that make Disneyland wonderful for Leo: Hotel pools that open at 9 AM. Cheerful and accommodating staff. Beer in California Adventure (OK, OK -- that one's for me). But the GAC is the Disneyland matter that matters most for our family. I will continue to monitor the DAS as it develops, and learn from others about whether it could work for us. I hope so, because I had just started to plan our next Disneyland trip. If we shouldn't go, I need to know soon.

"Take off your cape and just be a friend."

Please read Don't Be a Hero. It's an important essay on why folks who work or volunteer with people with disabilities need to rethink that pervasive Hero mindset. Excerpt:

 "Imagine learning that someone befriended you with intentions of putting it on their résumé as volunteer experience or merely to pat themselves on the back. What if your friend accepted your social invitations “out of the goodness of their heart?” How would it feel to know that what your “friend” gained from your relationship is the righteous feeling that they were doing you a favor? Would you feel like you were experiencing an authentic interpersonal relationship? I’d imagine not. I’d imagine you’d feel used, cheap and deceived."

I'd rather see folks with Iz's attitude. She went to a sibling camp with Leo a few years ago, and keeps asking when the next one is going to be. I told her she was getting old enough that she might be able to work at the camp soon.

She was excited, and said, "That would be great!"

"Yeah," I said, "The pay is pretty good, too."

Her response: "I'd get paid?"

More of that. Yes please.

The TPGA Dialogues Discussed, Part 2

I replied again to the TPGA Dialogues discussion continuing at Julia Roberts's Support for Special Needs, because there's still some not getting it going on. While it is against my non-confrontational nature to get in the middle of such things, this is not about me -- this is about doing the right thing even when it's not easy.

While I don't doubt that Julia will post my comment, those comments are moderated and it might take a bit for this to appear.

---

Apologies for the delay in replying -- beyond busy these past ten days though I've been thinking about this the whole time, because it's so damn important.

I am all for civil disagreement. I crave it. Anything else is an aversive and makes me wince.

But I also recognize that it is unreasonable to expect people who are oppressed to be civil when discussing that oppression with the people who are oppressing them. We parents who do not ourselves have/share our kids' disabilities know too well how pissed we get when folks treat us and our kids badly, especially when they do so from behind a shield of good intentions. Do we really want to behave that same way towards people who know what it's like to be our kids, and who (in the case of every last adult with autism who wrote for the Dialogues) work so hard to make life better for our kids/people with disabilities?

If we were parenting children of a different sexual orientation or race, I'm guessing very few of us would dismiss the feelings or rights of representatives from our children's community, or get publicly defensive if we were called out for writing something offensive to them if we did so out of ignorance rather than malice. We would listen and learn rather than protest because those communities have established, recognized advocacy movements, and have changed the way most of us think -- to the point where folks who publicly oppose racial equality or LGBT rights look like total assholes.

The rights matters discussed in the Dialogues are no different, but the discussion is younger, and while the Disability Rights movement is long-standing, the Autistic Self-Advocacy movement is just starting. Do we really want to be the opposing assholes cited in the history books? If we aren't ready for, don't have the energy to, aren't able to help, or aren't able to tolerate the unpleasantness that comes with working towards and effecting real social change, can't we just listen without making it about us -- or get out of the way?

This is hard for me to write. I like everyone who wrote for the Dialogues. I always want everyone to get along. And, when I find out people are upset my heart goes out to them -- as it did to Rob Rummel-Hudson when there were real-life repercussions from participating in the Dialogues, and as it did to so many of the participating self-advocates who felt that Robert and other parents continued to justify not listening to and dismissing them.

I am not saying all self-advocates are paragons of righteousness and perfection, or are incapable of making mistakes, or that we non-disabled parents need to listen to every last word they say and can never argue, never have the right to stand up for ourselves. That would be absurd, as it would be to expect self-advocates to view us non-disabled parents the same way. But when the discussions are about what self-advocates want, and what they need, and what they deserve? If we want to be the kind of parents and allies our kids want, need, and deserve, then we need to listen.

Again, I recommend people read the second week of the Dialogues, which would be the top five posts at the following URL, i.e., Day Six through Day Ten: http://thinkingautismguide.blogspot.com/search/label/dialogue.

I also recommend reading Jean Winegardner's excellent essay on the Dialogues, Who Should Lead the Autism Rights Movement:
http://communities.washingtontimes.com/neighborhood/autism-unexpected/2011/sep/30/who-should-lead-autism-rights-movement/

Update: additional recommended posts from advocates:

• Neurodivergent K: For the Billionth Time, I DON'T HATE PARENTS
• Eater of Trees: Allies Are Terrible Forever
• Moonlit Lily: A Comment That Became a Post

"I Believe That the Only True Disability Is a Spirit That's Been Crushed."

An inspiring TED talk, in which Aimee Mullins deconstructs the term 'disability,' and underscores the opportunities adversity can bring us:



On prognosis and potential: "There is a difference between the medical condition, and what someone might do with it"

"All you need is one person to show you the epiphany of your own power, and you're off."

It's 22 minutes long, but well worth watching to the end.

Five Sets of Wings

Today we will be flying as a family quintet for the first time since the Can I Sit With You? Annex Theatre show in April, 2008. We will be staying with Seymour's parents as a family for the first time since Thanksgiving 2007.

I am nervous. I am cautiously optimistic. I have packed the full arsenal of Leo-happiness triggers. I am open to suggestions from anyone who knows about good activities for kids on the spectrum in beautiful Las Vegas.

Nervousness: Leo's been doing less well than his almost beatific well of 2009's January through November. He was still doing reasonably well when December started, so we decided to take a chance on a full-family trip (the kind where Mali doesn't have to ask, "Is Mommy coming too?").

It seemed like Leo's behaviors spiraled downward the day after we booked and paid for our flight. He started being fidgety, loud, and doing a lot of rapid-fire and ceaseless raspberries whenever he's seated. I didn't really notice this until Rook and I took our four kids to see Fantastic Mr. Fox, and Leo's noises and behaviors drew looks from other members of the audience.

He's also started to bust out with occasional hopping flailing octopus episodes where he decides that the best way to inform me that he dislikes an activity or wants to get my attention is to thwack me as fast and as many times as he can. At home I back away and tell him NO very loudly and firmly; in public places like post offices I have to keep ahold of him lest he bolts, and get pummeled.

I really, really hope his spitting and pummeling don't happen on the airplane or in the airport. But just in case, I am carrying a copy of the U.S. Department of Transportation's Nondiscrimination on the Basis of Disability in Air Travel (note: PDF) and will wave the following excerpt under the nose of anyone who complains about Leo's behaviors:

§ 382.31 Refusal of transportation.
    (a) Unless specifically permitted by a provision of this part, a carrier shall not refuse to provide transportation to a qualified  individual with a disability on the basis of his  or her disability.
    (b) A carrier shall not refuse to provide transportation to a qualified individual with a  disability solely because the person’s disability results in appearance or involuntary  behavior that may offend, annoy, or  inconvenience crewmembers or other passengers. 

This is not a preemptive #suckit for the other passengers; it's a way of guarding Leo's rights. Air travel means playing a lottery in reverse: usually you'll win, but sometimes you lose and get stuck near a crying baby or a kid like my son, neither of whom are responsible for their behavior, both of whom are likely in great distress,  each of whom have as much right to be on the plane as you do -- and who are  accompanied by freaked-out adults doing their best to calm the kids down, because we so do not want to piss off an entire planeful of people.

** Deep breaths. Not hyperventilating.**

On the cautiously optimistic side, he's using a lot of great language. Some of it makes us really sad; he enjoys thinking and processing and reciting items in pairs, and has a hard time mentally adjusting when we tell him that some of his favorite pairs of people are no more, like Jo Spanglemonkey and Manny, or my mom and dearly missed dad. He then goes over the pairs again, looking at us quizzically, as we remind him yet again that Pepere isn't here anymore.

He's also starting to verbalize whether people are present or not. The same sadness applies when he keeps insisting, "Grandma is at home. Pepere is AT HOME," and I have to tell him, again, that Pepere isn't here anymore (I don't know that "dead" makes any sense for him). Although I do appreciate his growing ability to recognize when house guests are no longer staying with us, e.g., "Badger is at home! Moomin is at home!" Those wheels are turning.

I hope his continuously expanding language skills and love for his grandparents (and their love for him) factor into a good, or at least a manageable, visit. We used to be quite the traveling family, and Leo used to be quite the traveling boy. Every single one of those trips was to visit or travel with family and friends. Leo usually loves being in airports and flying on planes. I'd like to see us inch back towards the traveling lifestyle that our sweet, social boy deserves -- but only if he can tolerate it, only if he wants to.  This trip will be telling.