Happy 7th Birthday Mali!

Mali with the "Spy Club" version
map of her school.

Happiest of seventh birthdays to our little firecracker. We are going to do our best to make the world ready for you while teaching you the art of selective compromise -- because it would be a tragedy if you let anyone convince you that your original, exuberant, creative, occasionally frighteningly cunning fabulousness is anything other than intrinsic and so very much the right way to be.

(The forgery, fondness for recruiting minions, and other black-hat path tendencies, though, we'll be watching and carefully redirecting those.)

But for today, enjoy the lobster dinner and chocolate cake you requested, along with our eternal love. You are simply wonderful.

Reading comics while rowing her boat

Foraging mushrooms. Of course.

Xoom Giveaway on TPGA!

The good folks at Motorola sent me a Xoom tablet to give away. No hidden agenda, no stipulations -- they had simply heard how tablet computers can help people with autism, and they wanted to get two of their devices to people in the autism communities -- one to Leo, and one to a blog reader. A blog reader who could be you! Which would be an excellent way to start out the holiday season, eh? It certainly was for us (the Xoom, it is hella cool and Leo loves it, too).

The giveaway is happening on Thinking Person's Guide to Autism, starting now, and ends on Saturday 11/26 at 11:59 PM. If you live in North America and would like a chance to win a very cool tablet device, head on over.

Leo + Disneyland = True Love!

Leo loved loved loved Disneyland. Loved. Like nothing I've ever seen him love before. So happy for him. Pictures, video, and full explanation/details coming. But. OMG. I couldn't have imagined this trip working out as well as it did.

Magic Kingdom-Bound

We're off to see the mouse tomorrow morning. Me, Mali, and Leo; for both of their birthdays. We're doing this instead of parties. Because I'm too tired to organize parties, and this is an very acceptable tradeoff to them -- or definitely for Mali and I hope for Leo.

It's been seven years since Leo visited his mother's homeland, the place where I used to drive the Electrical Parade's mine cart as Dopey the Dwarf. This is Leo on that last visit, in 2004, mesmerized by the Playhouse Disney show featuring Bear in the Big Blue House. (And 100% being his dad's mini-me.)

I've had a lot of good advice about taking kids with autism to Disneyland, about making sure we get that guest pass at City Hall. We're also staying onsite at the Grand Californian so we can retreat at any time, should Leo want to. (My mom is generously accompanying us so that Mali and her cousin Christy can stay in the park, should that happen.) And of course we have a Stories2Learn iPad social story about our trip.

But -- if you've been, and you've had a successful trip or just learned some interesting lessons about the Magic Kingdom, can you share your story? Not just for us, but also because I'll be writing up a post on this trip for BlogHer? I'd really appreciate some insights on what to expect, realistically. Thanks!

When Advocacy Means Taking It On the Chin

One of the most painful parts of any kind of advocacy work, for me, is having to call out a person who just doesn't get it (just doesn't get it yet, one would hope). It's even harder when that person is a beloved community member. But ... that doesn't mean they can't stumble, and badly. That happened yesterday when Rob Gorski of Lost and Tired published his autism opinion piece Autism is NOT one size fits all, in which he attempted to call for community but actually ended up reinforcing some fairly harmful stereotypes about people with autism, as well as divisions between autism and Asperger's. Which Emily Willingham called him on, and rightfully so.

Thing is, it's completely fair to say that my son's experience as a non-conversational person with intense autism is not the same as those of Aspergians like Alex Plank or Rudy Simone. We should absolutely be true to our own experiences, and to that end I implore you to read Kyra Anderson's brilliant meditation on autism parenting and autism diversity and inclusivity and open dialogue, Bring Everyone Out.

But it is rarely helpful to make those differences dividing lines or points of contention, because focusing on them obscures a critical commonality: every last person with autism or Asperger's -- no matter their node on the spectrum, no matter how "high functioning" you perceive them as being or whether you think they can "pass" -- has that diagnosis because of intense challenges in at least one area, usually more. I recommend reading Steve Silberman's recently published interview with Ari Ne'eman, specifically the passage:

"Not too long ago, a colleague commented that I should be proud for being so nearly “indistinguishable from my peers.” Only in the autism community would anyone consider that a compliment. Despite the good intentions behind the remark, I felt a profound sense of hate and disgust motivating it — not of me as an individual, but of the person I was growing up, and of the person I still am, hidden underneath layers of mannerisms and coping strategies and other social sleights of hand. Those kinds of statements define our worth as human beings by how well we do looking like people whom we’re not. No one should have to spend their life hiding who they are."

Autism and Asperger's are the same universe. Anyone who thinks differently has not spent enough time participating in the wider autism community.

The real issue is that Rob is seen by many as a role model for autism parenting -- and if his opinion has influence, and that opinion is actually damaging to autism communities rather than constructive, then we can't stand by and excuse him because of the separate issue of his personal life being so stressful. That's the hard truth of real advocacy, and it sucks.

I think we all empathize with Rob, and we want to support him and his family the best we can -- to that end, we have featured his writing on Thinking Person's Guide to Autism, and I encourage you to visit the Move the Gorskis campaign page.

I don't envy Emily for the blowback she's received for being willing to call Rob out -- his readers are very protective of him, which is understandable. Their emotional investment, and the fact that even deserved criticism can feel like an attack, makes it hard to accept the fact that his opinion piece, though heartfelt, was badly misguided.

To Bloody Hell, and Beyond!

Leo's shirt soaking in the sink upon returning from the ER.

Here's what I re-learned this weekend: Head wounds bleed a lot. I just wish Leo wasn't the reason for the field medicine refresher, even though his bonk ended up being too minor for stitches, and even though he has been fine ever since.

Our boy was engaging in a bit of pre-bedtime wild rumpus, and tripped and hit his head just behind the hairline, on a brass door hinge. It was an instant gusher, so much so that between the blood and the curls we couldn't see how big the cut itself actually was. Seymour had a dishtowel on Leo's noggin in an instant, which Leo unfortunately found even more distressing than the injury itself. As we then needed both a driver and a staunching assistant, the entire family abandoned our chicken dinner and rushed out the door to the hospital.

The ER visit was routine and uneventful. ER staff tends towards dry humor (my mom was an ER nurse for almost 30 years), so it was not surprising when the front desk greeting our blood-drenched boy with a matter-of-fact "Well, that doesn't look good," and marched him off to Triage. After that, Leo was mostly happy to watch videos on his iDevice, and get hugs and kisses when he remembered that he was injured and in a hospital. After a while, he even crawled onto a bed and asked for a blanket (it was his bed time, after all).

Once the medics were able to wash the blood out of Leo's hair and see the wound itself, it turned out to be a lentil-sized divot. No need for interventions besides a dollop of Polysporin. The attending doctor managed not to roll his eyes, but was obviously unimpressed -- sending us out the door with a reminder to keep it clean and that, yes, head wounds sure do bleed a lot.

Seymour and the girls mostly stayed in the waiting room while Leo and I were in the exam room. Apparently a local Sheriff was waiting as well, which gave Mali the opportunity to whip out her best  Dale Carnegie routine:

• Sheriff: "Aren't you cute! I like your boots."
• Mali: "Thanks! I like your gun!
• Sheriff: "Uh, thanks..."
• Mali: (Does finger guns) "Bang! So, are those your bullets?" (Points to his impressive sets of rounds)
• Sheriff: "Uh ... yes they are ..."
• Mali: "So, what are those plastic things they're in called?"
• Sheriff: "Um, they're called magazines..."
• Mali: "So, why are you here?"
• Sheriff: "Well, I'm waiting for my friend Charlie to get fixed up from a car accident..."
• Mali: ...told the sheriff about Leo and his bonk, chattering until until the sheriff edged away. 

In her defense, Seymour says it was a very big and very shiny gun. Plus this is a girl who heckled Demetri Martin in front of 2000 Radiolab fans -- social confidence is not an issue. Social finesse, that is something else (and this is the moment at which I implore you to check out today's TPGA interview with Flummox and Friends creator Christa Dahlstrom and support social smarts programming for quirky kids like all three of mine!).

We went home. I soaked Leo's shirt in cold water (see above), which meant the blood washed out easily and his favorite shirt survived the incident as easily as its owner. We scrubbed those kids that needed scrubbing assistance and tossed them into bed and gave thanks for the conveniences of our life -- like insurance and ER proximity -- that made the whole incident so much less stressful than it could have been.

Leo was fine the next morning, except for occasionally asking for more kisses on the bonk spot. We spent the morning at the Palo Alto Junior Museum and Zoo's Super Family Sunday, an annual event during which they open the facility just for families of people with special needs. What a soothing, happy, stress-free event -- can't imagine a better way to follow up the previous evening's excitement (and I love to see museums and zoos and other orgs do this for our community).

Whew. We're such a lucky family.

Non-bloody Leo loving the PAJMZ's new climbing web.

This One Goes to Eleven!

Happy Birthday, most wonderful sweet lovely impish boy ever.

89.42%

Iz wants a cell phone. Desperately. Her lobbying reached a fever pitch one year ago, and irked even her usually unflappable dad. So we struck a deal: She both stops perseverating on the topic and hits a certain grade plateau for three trimesters in a row, she gets a phone.

She stopped the daily campaigning. She also hit the marks easily for the first two grade cycles. But this Friday, when the third cycle's grades came in, she missed the bar in one class: her hardest, the one she likes the most. By .58%.

She earned a 89.42 B+.

She's not getting the phone.

Because that's the way the world works. Sometimes you fail, despite putting in your all and doing your best. And, you can't argue with math. It's a lesson kids needs to learn, in a way that really sticks. When they're young. Before they get to high school, college, the work force -- before they start believing they can negotiate anything, before they start dealing with people who are not their parents.

This lesson is sticking.

I completely empathize with Iz wanting a phone -- most of her friends have them, and they text each other all the time. She's out of some social loops, and that sucks. But I also see some of her friends treat their expensive devices casually, losing or breaking them without much concern. And Iz is like her mom -- she spends much of her life in her head, untethered to the material world, which means we both misplace important stuff due to inattention. She needs to understand that having a phone is a huge responsibility, a big cash-intensive deal, and one that requires constant locational awareness. These points can't be emphasized strongly enough.

And she will get a phone on her thirteenth birthday, which is in two months. That's been a given since she was wee, since she first started making noises about apps and texting. I think a phone is a good idea, given that she'll be in high school next year, and her activities and independence will only ramp up.

But two months is an eon, from her perspective. She's really bummed. I don't blame her, and told her so.

She handled the missed mark with good grace, though she was initially extremely upset -- she did work her ass off, after all. She also said that she'd rather get a B+ in that class -- which in her opinion is taught by the more invested teacher -- than be in the less challenging class and not learn as much and get an easy A. Her eyes are on learning and mastery, not primarily on the grades -- though she understands that they're important, too. And she did get a consolation prize for the hard work that resulted in such good marks: The first season of a trashy teen soap opera on iTunes.

It's important that our kids to learn how to fail. In that way -- and even though I would never intentionally cause my sweet, thoughtful, hardworking girl distress -- I'm almost glad she didn't get that final A. Better she learns this lesson from someone who loves her unconditionally.

Finding Balance: Obesity and Children with Special Needs

Leo is a chubby boy. There's no pussy-footing around that. Whereas his pediatrician once had a "let's wait and see" attitude towards Leo's health and girth, she has started to remind us that now is the time to instill life-long healthy habits in our boy, if we can -- understanding of course that Leo's autism comes with food issues, and that the appetite-whetting medication he takes to help him control aggression is a complicating factor. And I know that Leo is not alone in needing to find strategies to be a healthier kid.

So it was with great interest that I joined yesterday's conference call with Ability Path, Special Olympics, and Best Buddies on their just-released report: Finding Balance: Obesity and Children with Special Needs [PDF]. I was relieved to discover that the participants mostly focused on practical, healthy support and strategies for families and individuals with special needs, rather than stigmatizing obesity itself.

The following are my notes from the conference call, any errors or omissions are also mine.

AbilityPath.org launches national campaign to raise awareness, end obesity epidemic, publishes guide for parents and caregivers in coalition with Special Olympics and Best Buddies International

Ability Path's Gabrielle Karampelis moderated the call, and stated that the report is meant to ignite conversation.

Sheryl Young, CEO of AbilityPath:

Children with special needs and disabilities have been left out of the national conversation about the obesity epidemic. We need to include them -- and we need to talk about the role that family members play, or physicians treating and advising family, or the school responsible for physical education and inclusive programs, or city council members approving inclusive equipment at playgrounds or at the park. They all need to be part of this conversation, for the following reasons:

1. Thirteen percent of American families have a child with special needs or disabilities.
2. It's really impossible to overstate the extent of the problem, we don't have enough information -- but in general this population is 38% more likely to be obese, and in some specific populations the numbers are more critical -- in the Down syndrome population the rate is 86%.

The issue is seriously complex, but we're hoping to education the general public about this -- and also convey a sense of hope. We want to raise awareness and have a call to action.

Tim Shriver, Chairman, Special Olympics:

For us, this report is bad news. We have over 3 million participants in community and fitness programs. We all deserve a failing grade in the ways in which we've created communities of health, fitness, and inclusion. I think the crisis is seen most closely in social aspects, but also in health aspects and discomfort aspects. There is a sense of apathy about creating a difference, and with our community commitments.

The Special Olympics is committed to redoubling their efforts, and accepting that this report is an indictment of our efforts. We need to include kids, need to "play unified" so everyone get the chance to be healthy, learn sports and nutrition. Our coaches will be trained in year-round fitness and nutrition, not just shooting baskets and running the 100 yard dash.

This is beyond a warning. This is a statement of serious problems. Our commitment:

• First and foremost to expand our work
• Second that when kids join Special Olympics, kids become not just more fit, but committed to health and fitness and nutrition
• Third that kids get to be in inclusive fitness environments

Robin Sinkhorn, Lauren Potter's mom (Lauren plays Becky Jackson on Glee, and is now 21):

I'm so glad to be part of the release of this report, Lauren has struggled with this issue daily for her whole life, and I have supported her.

The report is full of real and practical solutions that we can really use to help our kids. It's so important that when people talk about obesity issues, they include our kids. (Robin wants to help any advice she can as we move forward.)

With Lauren as with many other kids with special needs, the relationship with food is always more complex than with typical peers -- especially in terms of balancing healthy choices and independent food choices. Now that Lauren is a young adult, any suggestion can be seen as treating her like a child. This is especially hard now that Lauren spends so much time on the Glee set with overabundant food choices.

70% of young adults feel parents are intruding when they offer solutions. But Robin thinks this report offers hope and health. When she read the report, she felt like it was the story of her and Lauren's life.

Questions from callers

Shannon Rosa, Thinking Person's Guide to Autism: When our kids are on medications that increase their appetites or lead to sedation, how can we balance those side effects with their health?

Cheryl: The question has come up the most: When we announced the report, we had streams of comments on our Facebook page (www.facebook.com/abilitypath) about this issue.
When the meds work, and you need them to work, then talk with physicians, hopefuly they'll have better info, and will be able to suggest other things you can do. You'll probably have to make lifestyle changes, like walking every day. Every family has to look at what works for them, and get more success stories that we can share.

Tim Shriver: We have a generation of medical professionals that are really seeing kids with special needs into adulthood, they are treating major conditions and seeing nutrition and healthy lifestyle as a lesser priority. In the meantime, the advocacy lies with parents and self-advocates themselves to challenge  their physicians to help them understand how medications can contribute to unhealthy lifestyles. We need to come up with new models that prioritize healthy lifestyles.

Gabrielle: This report is meant to spark conversations, encourage families to put health at the forefront of their medical concerns:

Reporter for La Opinion: Does economic status contribute to the likelihood of negative health outcomes?

Tim Shriver: Resounding yes. Poverty contributes to negative health outcomes, and special needs can contribute to poverty. People living in poverty are more likely to be obese, and have significant health problems -- and find it difficult to get health care. This is true not just in the United States but in developing countries all over the world -- Latin America, Africa, Asia. This is a situation where poverty contributes to injustice -- when injustice is defined as "unfair treatment."

La Opinion: Why do special needs contribute to being overweight?

Robin Sinkhorn: That speaks to the complexity of this issues -- you're dealing with kids across the special needs spectrum, regardless of income -- they're not as active, they might have food issues, food aversions, food cravings because of medication.

Liz Doughty, San Bernadino: I have a 26 year old granddaughter with seizures -- she gets very upset when she feels caregivers are impinging on her independence, but she doesn't always make the right decision. What advice do you have?

Robin: It's very important to set up your child's expectations, and let them be the person to make the healthy choices. Lauren just got an iPhone app that can help her track calorie counts. That might backfire in terms of being overly concerned about calorie counts for some people, but it's one little thing that has worked for us.

Cheryl: It also helps to hear from doctors that health will impact lifestyle, as opposed to hearing it from parents or caregivers.

One of our clients has incorporated walking into her daily routine whenever she can, has lost 20 lbs and has a goal to lose another 20. She also now fixes her own lunch at home. At AbilityPath.org, we are compiling a list of websites and apps to help people track their own meals and health, and create menu plans and goals. They are also starting up peer support groups so folks can help support each other. It's promising.

Laura Cork, from parenting blog LAStory: What are some solutions to help other kids understand that our kids can be strong, and how to include them?

Cheryl: The Special Olympics and Best Buddies just partnered up with Nickelodeon's "How I Play," national day of play -- a great success. Steve Wampler, who has cerebral palsy, recently climbed El Capitan, and does inclusive camps -- he's really dedicated to showing how our kids can exceed expectations.

Tim: Exercise, sports, and play is what our kids like! They enjoy setting up games and playing sports, swimming. The best way to promote a healthy lifestyle is to make it motivating and fun! Include incentives that are enjoyable. Let's get kids playing together!

We organize unified sports -- but we also see self-organzing happening in middle school, high school, assemblies, outings, campaigns -- so why not with sports and play? Let's make it easy and important rather than peripheral! It shouldn't be marginalized, completely overshadowed by medication or homework. It is critical to expand accessible and inclusive sports and play for people with speical needs of ALL ages.

Leo playing on his soccer team

TPGA on Special Needs Talk Radio

Yesterday the entire TPGA editorial team -- me, Jen Myers, Liz Ditz, Emily Willingham, and Carol Greenburg -- was interviewed by Elise Ronan on Special Needs Talk Radio. It made me incredibly proud to be part of such a smart team of ass-kicking women.

Listen to internet radio with SpecialNeedsTalkRadio on Blog Talk Radio

We talked about the forthcoming TPGA book, why it is so important for both our team and our project to represent an autism cross-section -- parents, Autistics, and professionals; what we hope to accomplish; the fact that the only investment in this all-volunteer project is our own blood, sweat, and tears (and, OK, occasionally the blood of non-critical-thinkers); and that we created this project to be a one-stop resource for families and individuals new to autism, to help them fast-forward pass the negativity and misinformation from organizations that may appear legitimate to new autism parents and the newly-diagnosed. And oh, a lot more.

A correction: rather horrifyingly, and in my nervousness, I bungled the name of ASAN -- the Autistic Self-Advocacy Network, www.autisticadvocacy.org -- and want the org referred to made absolutely clear. I cited ASAN in highlighting their new project for helping people with autism navigate college -- appropriately enough called www.NavigatingCollege.org. Please check out the new site and broadcast it widely!

Being Proud, Being Present: Autistics Speaking Day

Today is Autistics Speaking Day. I hope you're participating -- if so, submit your post to the official site! -- or at least listening. Really listening.

TPGA is participating with gusto: Carol Greenburg is tweeting fabulously via @thinkingautism as -CG, saying things about being autistic and parenting a child with autism that you absolutely need to read, and Liz Ditz is doing her usual fantastic post curation as -LD  on @thinkingautism and also at our site, ThinkingAutismGuide.com.

Leo's not much for opining verbally -- but I want you to know that he's here, he's not a boy who lets people ignore him, and I'm proud of him every time he does speak out and tell people what he wants.

Photo (c) 2011 Thai Chu, Alive by Shooting