One Healthier Autistic Dude

Last year at this time, Leo met with an endocrinologist to assess his health. Partially due to the medication he takes to help him manage his anxiety, he had elevated blood sugar and triglycerides. The first put him at risk for diabetes, the second for pancreatitis. Both of those conditions, in case there are any doubts, are best avoided if possible. The endocrinologist recommended eliminating sugar from his diet, increasing exercise,

Leo walking the new Devil's Slide trail.
[Description: teenage boy with a blue &
orange jacket and gray shorts, seen from
behind, walking the dashed yellow line on a
black asphalt bike lane, with bushes, hills, &
fog in the background.]

increasing his daily dosage of cod liver oil, and meeting back in a year to see how he was doing.

We did all of those things. Yes, more fish oil (he didn't mind). We removed juice from our house, eliminated sweets except for special occasions and even then reduced portions (bringing along substitutes like apple slices), and stepped up his exercise program with track running and stretching, soccer, swimming, and more hiking.

And guess what? It worked.

His blood sugar is now within acceptable limits. His triglyceride level was halved. His height/weight ratio (as a side effect) improved significantly, by medical standards anyhow. So that's good. Diet and exercise really do matter. Who knew.

Leo still has room to improve. He still needs less sugar and more fiber/whole grains. His morning yogurt -- practically his only calcium source -- is quite sugary. So we'll try cutting that with plain yogurt. He eats bagels for breakfast a few times each week; we can swap the plain version for whole wheat. And there is always portion control -- lately we've been bringing thinly sliced apples everywhere -- increasing the crunching/chewing to volume ratio seems to satisfy him.

But I'm proud of him, and relieved. (And hoping to follow his example as two days ago my own doctor read me my own medical riot act re: cholesterol & triglycerides, damn it all.)

Beach Day at "Camp Mom"

The kids have the entire week off. All three of them. No school, no camps, no travel, just quality time with their favorite mother/drill sergeant. Which means we left the house at 8 AM amidst much moaning and groaning, and headed for our gorgeous California coast with the goal of exercise and fresh air.

Northern California beaches are not exactly magnets for summer sun worshippers. Though they are magnets for fog and crags and bouldering and giant mussel shells and running around writing the names of one's favorite band in giant letters in the sand (if one is fifteen) and appending "sucks" (if one is nine).

We never get bored by our coast's geological variety, either. Especially if it provides hidey-holes.

As usually happens, the kids get along better as a trio than the girls do as a duo. Though Iz & Mali  put visible effort into not using their brain powers to explode each other's heads today, which I appreciated and so did Leo (he gets very upset when they spar). Or maybe the head-exploding beauty of our surroundings was all their little neural nets could take, at that time. Don't care. Grateful.

Leo has definitely taken to using me as a walker of sorts, whenever he's not entirely certain about where we're going, and when we're going uphill. He was also taken by the hundreds of giant mussel shells on the beach, so he took one -- as you can see if you look closely. Mussel shells make great stim objects! They are good for rolling between one's palms. Leo's new shell didn't leave his palm all day.

Another reason people may avoid our beaches: they can be treacherous, though not always not obviously so. But we respect signage, plus we've heard too many stories about friends-of-friends and local folk swept off beaches and rocks by rogue waves. This beach has the added challenge of being located across a somewhat busy two-lane highway from its parking lot -- a challenge my kids faced and overcame with shockingly minimal grousing. Probably because they could see how pretty the beach was from across the road. And then once we were across the road we got to talk surf fishing with the surf fishermen. A lucky sort can catch a halibut right from the shore, we were told.

Camp Mom includes errands (Target, a group exercise in patience and fifty variations on rephrasing "No."). And then there's chill time. And then there's focused 1:1 time for each kid. The girls, spoiled things, got to sit with me while I demanded they "be brutal" in purging childhood memorabilia. Lopsided, unusable coffee mugs from a 3rd grade Art in Action class -- cherished memories though they evoke -- sometimes simply have to go. And though we have a few jettisoning sessions left, we can now see the tops of both of their desks. Plus we found the missing liver from the anatomy doll Iz gave to Mali last year.

(Mali also used her 1:1 time to ask me if I'd noticed that it was always the youngest kids in Greek mythology, like Zeus and Uranus, who staged the big takeovers. She then backpedaled as hard as she could when I asked if she was plotting a family mutiny, saying she was just pointing out patterns.)

Leo and I did his room purge earlier this year, so we spent some time checking out a new iPad app called Drive About: Number Neighborhood (disclosure: ArtGig Apps send me a code). Even though Leo is of course quite independent with his iPad, he still sometimes needs help focusing with new apps. And sometimes when we explore new apps together, we discover unexpected areas in which he needs support.

Most of the activities in Drive About: Number Neighborhood were straightforward for Leo to use, and were the kind of activities he enjoys: practicing number identification, matching, ordering, etc. through animated games. But when we got to the whale counting activity, he was stymied -- because the counting was done via slingshot, and that is apparently a concept for which Leo needs extra processing & practice. He kept trying to push the green balls into the whale's mouth instead of pulling the slingshot back to shoot the them in. After a few sessions of me demonstrating how it worked and then showing him how to do it, he started to get it. He'll need more practice, though. And I would never have realized how non-intuitive Leo considered the slingshot concept if the game hadn't included it and I hadn't sat down with him to play it. One more example of apps teaching our kids more than they are designed to teach.

Much of our trip to Target was to replace last year's destroyed pool toys. I spent a good deal of the post 1:1 camp sessions looking like this while the kids asked if the floaties were ready yet were they were they?

Which was worth it. Because Leo & his sisters now have new floaty chair rings, which are apparently the most wonderful pool objects ever designed -- the declaration was unanimous.

We closed out our first day of Camp Mom by watching HellBoy. Which Mali already loved, but which Iz & Leo hadn't seen. Leo's reaction was initial interest, followed by falling asleep on the couch. But Iz declared it the kind of movie she loves. So, more HellBoy-like movie suggestions are welcome.

Four more days of Camp Mom to go!

Trampoline Exuberance and Bickering Death Match Time

Summer starts today! For Leo, anyhow. His sisters have been out of school for two weeks, doing their best to keep the tradition of Bickering Death Matches alive and well and my heart rate proportionately elevated. They are free to a good play date (Mali) or babysitting job (Iz), please note.

Leo got a jump start on summer at his twin friends' birthday party two days ago. At a trampoline emporium, during trampoline emporium slow time. The results can only be summarized as OMFG YAY:



I think it's time for Leo to make his own transition from Pump it Up to Trampoline Emporium birthdays. Another milestone. For our increasingly grown-up dude.

And now, off to those lazy days of swimming, hiking, and -- if the girls keep it up -- gimlets or possibly even Xanax (for me, not them, ahem). Any bickering defusing advice would be so very, very welcome. They are nine and fifteen. Help.

On CBC Radio: Speaking Out When Autistic Children Are Murdered

I was interviewed last month by the CBC's George Baker for the Daybreak North radio show, about the murder of autistic teen Robert Robinson at the hands of his mother Angie. Lara Lohne graciously transcribed the interview, and I am posting it here for those who wish to read rather than listen. I have edited the transcript for clarity and grace, e.g., to remove my "erm"s and overuse of "right?," etc.

The original audio version of the interview is at When Autistic Children Are Murdered, Are They Treated As Victims or Triggers?

My blog post about Robert, which precipitated the interview, is Please Stop Being "Understanding" When Autistic Kids Are Murdered

----

George Baker (GB): Prince Rupert RCMP say that earlier this month, 40-year-old Angie Robinson killed her autistic 16-year-old son, then she killed herself. Family members say Robinson and her son didn't get enough support. But Shannon Rosa says that's no excuse for a mother to kill her child. Rosa is the mother of a son with autism, and an advocate for families with autistic children. In a blog post titled "Please Stop Being Understanding When Austic Kids are Murdered," she writes:

"Once again the implication is that Robert's mother Angie, who could tell people what she was experiencing and could have walked away, was the victim; and that Robert, who relied wholly on Angie to communicate and advocate for him and who had no escape options, was ... his mother's trigger."

“When autistic children are killed by their parents are they treated as victims or triggers?” Earlier this months in Prince Rupert, 40 year old Angie Robinson killed her autistic16 year old son, Robert. Then she killed herself.

Family and advocates say a lack of support services are to blame for the situation. Shannon Rosa's son also has autism. And following the deaths of Angie and Robert she wrote a blog post titled, 'Please Stop Being Understanding When Autistic Kids Are Murdered.' She's a writer and advocate in the San Francisco Bay area and she joins us now. Good morning, Shannon.

Shannon Rosa (SR): Good morning.

GB: As the mother of a son with autism, what went through your head when you first learned about this story?

SR: Mostly I just cried -- I have to tell you -- because [parents murdering their autistic children is] not an isolated incident and it happens too often, and too often the message is “Oh that poor mother” instead of getting information about the victim, sympathizing with the victim and trying to get out more understanding about autism so we can prevent this from happening again. [Robert] looks exactly like my son, it was uncanny, really. So ... I just cried.

GB: Physical resemblance, of course, is there. How much, though, can you relate to the struggles that Angie Robinson was apparently going through?

SR: My son really is quite a lot like Robert. He's also the most amazing kid, we love him so much. We need to get that message out too: We don't hear enough stories about happy families.

My son often has a hard time, because it's often hard to be autistic. So many times with autistic people who can't speak, they aren't given the opportunity to advocate for themselves. They can't communicate if they're bored, they can be sick, they can have sensory sensitivities: they can hear everything in the room and it sounds like gongs going off all around them. They can have visual disturbances and all these things. 

Could you imagine being in situations like that and being a very tall, very strong person? If you read stories of autistic people who can now communicate but who when they were younger were like Robert, or they were like my son, Leo, they will tell you how maddening it is and how frustrating it is. 

I think if we're going to talk about services, we need to talk about services before we get to a crisis, we need to talk about getting services so that we can understand our autistic children and adults and get them what they need to be able to function and live a happy life.

GB: Talk about what life is like with your son. What are some of the challenges you face, every day?

SR: Ok, well, I don't like to get into it too much because I like to respect his privacy.

But he's mostly non-speaking, in fact right now to expand his quality of life and ability to communicate, we are investigating a device that actually allows him to communicate by touching on symbols, it's like an iPad and it produces spoken speech. Because a lot of the time, autistic people will be intelligent but they will have motor planning issues that make it so they can't produce speech -- but they can use devices like this. So he's learning to use that, which is great.

He goes to a school for autistic children and they actually have an adult program as well. He needs 1:1 support because really, he's very autistic and sometimes he lacks impulse control. So he wouldn't necessarily understand that he shouldn't open up car door on a freeway. But that's not because he's misbehaving, although some cases it might be. It might be that the reaction he gets from me when I see him open the door is so great that he can't resist doing it.

Again this goes back to understanding autism. I think there's a real problem with people thinking autistic kids and people are bad, when they are misunderstood. And back to these murders: you see people who are very wealthy or who have all the services in the world who still murder their kids because they don't understand autism, or they want their kids to be "cured," or not everybody has the ability to be the parent for a child who has intense needs.

I think in the case of somebody like Angie and Robert, where everybody talks about how much support that the family had -- in that case, when we have autism families we need to be very vigilant about [watching for] signs of stress. The message that we need to get out to them is that if you think you're reaching the edge, what you can do is you can call 911 on yourself. I don't know, I apologize, if it's the same code in Canada as it is in the States. But it's better for your child to be with the authorities and alive than it is for your child to be dead. That's the message that people need to hear. Over and Over again. 

Some [other autism parents] say I'm not terribly sympathetic to them but the thing is -- I am a parent to a child with intense needs. I get it. He's big, he's as big as me now and he's only going to get bigger. But understanding that parenting can be difficult and getting in the mind space where someone would kill their kid, those are two separate things. So I think if parents are having a really hard time, that's when you need to reach out -- not when you're at the point where you feel like you're going to murder your child. Because, again, parents who are mentally ill, most of them don't kill their children, parents who have autistic children, most of them don't kill their children. So it's not because of services, you know what I'm saying? If that makes sense.

GB:  Yeah. The portrait painted of Angie by the people who knew her,  is one of a mother who loved her son but was unable to find help and ultimately driven to take her own life so I ask, is there not room for sympathy here?

SR: That is absolutely what I'm saying. But the sympathy needs to be extended before you get to the crisis. The sympathy needs to be with people who are alive, instead of after the fact saying, “Oh my God...” you know, “she should have done something differently” ...

I'm sorry, I'm getting a little flustered just because this is very emotional for me.

We need to get the message out to parents like Angie that it's OK if you're at the edge. It's OK to surrender completely in that you can give your child up to the authorities. You can walk away. It will ruin your life, yes, but at least your child will still be alive. You can do that.

I'm part of an organization called Thinking Person's Guide to Autism and all we do, all day long (and in our book) is advocate to get parents services and understanding, and work with autistic people and professionals as well. This is all I do, all day long. So there's no chance of lacking empathy or sympathy for other parents. But I cannot extend it when somebody crosses the line. Although I can say that if they didn't understand that calling services on themselves and abandoning their child is an option, then that's due to lack of understanding. That's the message we need to get out, instead of saying that autism causes murder.

GB: There's been a lot of criticism on the BC government and the rest of society, quite frankly, here in Prince Rupert about how much service there is for people dealing with children, coping and living and raising children with autism. Is there not room also for this to become a political story, a societal story in which people are forced to react?

SR: I can't do that. I can't get behind that because then you are saying, essentially, that if autism families don't get services then they're going to kill their kids. You know what I'm saying? If you use that as your lead. I think we need to work harder and longer to get services to the autistic people and their families who need it because it's what they deserve as human beings. It needs to happen, it's just what we do as a society that cares about all the people in it. And I know that BC's had a really hard time with cut backs recently, but we need to look at who the most vulnerable people in our society are, who can't necessarily advocate for themselves, and just because they aren't given the opportunity to advocate for themselves doesn't mean they don't deserve to be taken care of.

GB: Shannon Rosa we'll have to leave it there. Thank you so much for talking to us today about this very difficult topic.

SR: Thank you for having me, I really appreciate it.

GB: Take care, Good bye.

SR: OK, good bye.

GB: That is Shannon Rosa, a writer and advocate for families dealing with autism. She's also the mother of an autistic son. You can find her blog at www.squidalicious.com. We, of course, would love to hear your take on this story. Email us at: daybreaknorth@cbc.ca, Give us a call 1-866-340-1932.

We are also on Facebook, and on Twitter @DaybreakNorth.

*Canadian Broadcasting Corporation, essentially Canada's NPR or BBC. 

Happy! Because of IMFAR & Despite Trial By Fire (Yes, Literally)

Image: Selfie of me & Leo. We are a pale-
skinned, dark-eyed duo. His hair is curly &
brown, mine is short & red.

April's autism awareness/acceptance marathon wore me out, as it does most people involved in autism-centric advocacy. Plus the International Meeting for Autism Research (IMFAR) came right on April's heels, and also wore me out. In a (mostly) worthwhile way. And all by choice.

But, both sappily & sincerely, any fatigue vaporizes when I spend my first day home from IMFAR driving around with Leo, and he turns to me with a big smile and declares, "Happy!"

Dude, me too. I'm glad to be back with you and back to our regularly scheduled program. I'm glad that your AAC trial period was a success. I'm glad that the pool is now lovely and warm and swim-ready and we've entered the insta-bliss period of the year.

(...and I'm glad you and your sisters were deeply asleep the night after I got home from IMFAR and woke at 4:30 AM to the smell of smoke. I thought perhaps you or your sisters had decided to experiment with matches or candles (scary but it happens), but quickly realized you were all asleep. Then I followed the smell out the front door, looked across the street -- and saw a wall of flame and smoke, complete with extra-loud crackling campfire noises. I am glad you all stayed asleep while I called 911 and your dad ran across the street to discover that the fire was actually the front patio furniture and built-in benches [BBQ mishap] and that the residents were all OK if, initially, deeply asleep. You might have enjoyed watching him put out most of the fire by himself until the residents and then firefighters pitched in. And I hope you were listening later on when I lectured you about fire safety and keeping the damn long dry grass cut short -- wildfire safety is no joke in these hills, especially not during this super-dry season. We are all spectacularly lucky the entire neighborhood didn't go up. I think I'll continue sleeping with at least one window open until we get some rain.)

But back to IMFAR. Carol Greenburg and I provided live coverage on Thinking Person's Guide to Autism Twitter and Facebook, and you can do a keyword search of the abstracts to see what researchers were presenting. I was pleasantly surprised by conference's progress in terms of minimized pseudoscience (Arthur "scope 'em" Krigsman's "autism is GI immunoinflammawhatzit" poster was a quackery holdout, and was adjacent to an NIH/Hopkins poster stating that immunological abnormalities in autistic kids were "unrelated to autistic symptomatology"). Another surprise: The emphasis, front-and-center acknowlegment that autistic people grow up and age, and that perhaps we need a whole hell of a lot more research into what autistic people who are not kids need?

Image: A swirling, blurry multi-colored carpet
seen from overhead, with a leg & shoe
coming in from the right.

IMFAR as an four day immersive experience was of course very very overwhelming, with all the info and social firehosings. My brain is still rebooting. I found this photo of the conference hotel carpet on my phone amidst the other IMFAR pics -- and, yeah, that's what it felt like. Especially since my computer's trackpad gave out, giving me a 35% chance of being able to click on objects at any time, coupled with flashing and dancing screens, and constant attempts to auto-define words anywhere near my cursor. Really fun, that, especially during live-tweet sessions. (Perhaps Stephen Shore, who was sorely missed this year, could use a similar experience as one of his sensory/disability simulations.) The real-world effects of my computer still being f'd up is that my IMFAR reporting is coming out in trickle rather than traditional firehose mode. But it's coming, so stay tuned.

Thankfully I was able to focus my mindpowers and force my computer to mostly cooperate during the SFARI-hosted IMFARchat TweetChat, during which science communicators, reporters, and autism org reps chatted about autism science & research topics & priorities. And we met so, so many wonderful people during IMFAR and learned, so, so many wonderful things. Carol and I also stayed with my wonderful best friend from high school and ate wonderful food and saw wonderful whale sharks. I am glad I went.

Video description: Whale Sharks! In an Aquarium! With people walking around underneath them!

That gladness was not confined to The Peach State: IMFAR inspired me to take immediate advocacy action in the real world. Right before I left for Atlanta, Leo needed a blood draw. He doesn't like them, but he's usually a sport. His phlebotomist was not; despite my attempts to advise about Leo's needs and concerns and to please not objectify my son, that phlebotomist was vocally less than respectful about Leo in front of Leo. And here's where I will admit to one of my personal failings: I shrink from confronting hostile people IRL. Especially when Leo needs all of my attention, and is extremely distressed. Which means, furious as I was, the phlebotomist got no blowback from me beyond WTF face.

Image: Academic Presentation Poster: "Autism Comes to the
Hospital: Perspectives of Child Life Specialists."
Blue bar on top, three columns of text paragraphs
superimposed on a gray caduceus.

I ruminated and fretted about the incident and my being a goddamn wimp throughout IMFAR. Until I came across the IMFAR poster Autism Comes to the Hospital: Perspectives of Child Life Specialists, which describes tools and strategies for helping de-stress autistic kids in medical situations, and emphasizes the need to train medical staff about autistic needs. So when I got home, I contacted Leo's medical office, let them know who the offender was, let them know what had happened -- and sent them the poster abstract so they could start working on making autism-accommodating tool kits of their own. They took my concerns very seriously and are talking with the phlebotomist.

Just so glad to be home. (And that I had a home to come back to.)

Don't Think Twice It's Alright

One of our family's favorite people passed away yesterday. H. was almost 81, and he'd been unwell for a too-long stretch, and we're going to miss him like hell.

When Seymour and I moved here 20 years ago, we did so via a meandering drive across the country. We started in Brooklyn Heights, packing up a moving van with Seymour's worldly goods and his pet snakes. The van broke down in Charlotte, North Carolina; we acquired a slightly feral flea-bitten kitten (Pat) at the van yard, and he rode in our laps across eleven states. We visited friends in Atlanta and Oklahoma City. We got engaged in Arizona's Painted Desert; Seymour called my dad to ask for permission and my dad said he'd always hoped I'd go into a nunnery, but eventually gave in. We celebrated the next day in Las Vegas with the local part of Seymour's extended family, and the day after that with the Fresno part of his extended family. And then we drove to Menlo Park, where a friend had promised to put us up until we found a place to live.

Except that friend was nowhere to be found. And that friend's yard was locked off by a gate, so we couldn't even park. And none of us used cell phones then, kids, so tracking the friend was not an option. We panicked, as we and our critters truly had no place to go.

Except.

Except H. He and his wife S. answered our frantic pay phone call and invited us to come stay with them as though it was the most natural thing two persons could do. Which, for them, it was; we were college friends with their son J. and his then-fiancee/now wife A. and had been to many gatherings at their community nexus of a home (S.'s only stipulation: the snakes had to stay in the van).

That's just the kind of person H. and his family were. Once we found our own place and settled in, H. & S. included us on camping trips to Burney Falls, where we cast lines alongside the wary ospreys on Bing Crosby's and Louis Armstrong's Gone Fishin' lake. We kids were part of each other's weddings, which took place four months apart and even used the same reception site. We went to H.'s & S.'s house for hootenannies (H. used to play in an Kingston Trio-like band), Super Bowls, and all sorts of smaller get togethers.

And then S. got sick; a few months after Iz was born, S. died. We were all devastated, H. most of all of course; he and S. had been together since they were teens. We processed our grief through music and long walks. H. would play his guitar for baby Iz, and I wouldn't be surprised to find our girl has the notes to Don't Think Twice It's Alright and Freight Train imprinted on her heart. For a while, until we didn't need to anymore, we met for a weekly jam session; Seymour (bass), H., his son J. (guitar) and another friend R. (another guitar) would roll through the favorites while Iz and I listened and we all healed.

H. met a new love, D., through group grief counseling, and they got married. We had another baby, Leo. We still got together from time to time, for Superbowls, and when five-year-old Iz belted out America the Beautiful at the top of her lungs at the hootenanny for H.'s 70th birthday.

And then we didn't see them so often. Because it wasn't always easy for us to visit houses like theirs with Leo, for many reasons. (H. & D. were always as kind and welcoming as ever.) But part of accepting autism means understanding that some expectations are not reasonable for your child -- and it's not the child's fault. It's just the way things are. And H. and D. understood that.

We saw them a few times over the years between. H. had a few health scares, and then a few more,  then recently went into the hospital and stayed there. (I love the nurses in the intensive units; they don't tell you not to cry, but they will tell you that if you keep crying you'll contaminate your gloves and gown and will need to change them and why would you want to go through all that bother when you could be sitting with your friend?) It was hard to see H. not want to be in such a state, but it was not hard to sit with him, because I loved him. And I was glad when he got to go home two days ago with hospice care, because that's what he did want.

We are all going to miss him, so much.

Crime, Punishment, and a Toca Boca Event!

Bjorn gives Mali a personal demon of
an at-that-time unreleased TocaBoca app.

Hey locals, Toca Boca's co-founder and CEO Bjorn Jeffrey is in town tomorrow, giving a workshop at Community Gatepath! Details below, and you should go. Because Bjorn is a great guy, Toca Boca is a great apps company (I've even written guest posts about autism for them), and GatePath is a fantastic org. But before I give you the event details, I want to tell you a little story about Bjorn, and Mali.

(I can't believe I never told you this story.)

In 2011, Toca Boca apps were among my kids' very favorite iPad distractions (they continue to be much-beloved). Mali loved Toca Hair Salon. Leo loved Toca Tea Party. And I blogged about how much my kids loved those lovely, beautifully designed apps.

One day, in late 2011, I received an email from Mr. Jeffrey, letting me know that he was going to be in San Francisco, and would I care to meet up? I said I would. We planned to meet at the Ferry Building. I told my kids. They were jealous.

And then the day before the meetup, which happened to be my birthday, I got a call from Mali's school. I needed to come pick her up because she not only had punched another kid, but had informed the kid that any tattling would bring additional physical retribution (the kid tattled anyhow, and claimed asylum in the school office). The school didn't take kindly to premeditated assault among second graders, which I understood. They also suspended her for the next day, which I did not understand -- how is getting to miss school a punishment, again?

To add to the not-aversive nature of her "punishment": as I did not have a suspension-day sitter for Mali, so she got to come with me to meet Bjorn. Who was gracious and informative, and gave our girl all sorts of demos of yet-to-be-released apps like Toca Kitchen -- which Mali played with while Bjorn and I talked about the intentionally non-text-based, exploration- & play-oriented design of TocaBoca apps, and why their design approaches makes their apps so well-suited to both international and special needs markets.

Maybe the non-aversive approach to punishment worked after all, as two years later our girl has yet to have a repeat suspension. And I am in a position to tell you unequivocally: Bjorn is an excellent speaker and app demo giver, and you should go to his presentation. Here are the details:

Please join us for an incredible (and free!) presentation by Bjorn Jeffrey, Toca Boca CEO and Co-Founder

Saturday, May 3, 2014
10:00 am -- 12:00 p.m
Niall P. McCarthy Center for Children and Family
1764 Marco Polo Way, Burlingame, CA

Come learn from the world's leading digital toy developer:

• Be inspired by Toca Boca's history and success
• Learn about the insights and research that goes into creating Toca Boca's world leading apps
• See demos and trial some of Toca Boca's top selling apps

Free fun giveaways to be presented to all participants and attendees will have a chance to win Toca Boca t-shirts, posters, and monster socks.

Childcare is available -- RSVP to indicate if you will be needing childcare to clocke@gatepath.com or 650-259-8544.

Spring Break 2014

Spring break was two weeks ago, but, as happens every year, the slipstream of Autism Acceptance month is hard to escape -- whether speaking out on CBC radio against justifying the murders of autistic people like Leo, joining MomsRising.org autism tweetchats, talking with Yahoo! Tech and BabyCenter about autism, speaking out on KnowMore.tv about what I'd like people to know about Leo, guest blogging about autism and vaccines for my friend Sili, or co-producing TPGA's Autism Acceptance Month autistic interview series.

Those are the kinds of things that kept happening instead. But since I've been doing almost no journaling here, I do want to at least put up a quick photo record of a most excellent week.

The week started out with Mali getting Carotenemia, which you can see in the orange creases of her knuckles. I told her to stop eating 10 tangerines per day but would she listen? It is a benign and purely cosmetic condition. She was not terribly bothered and informed me that "at least you know I'm not going to get scurvy." True. I also know that tangerine season just ended. Sorry, Toots.

We also visited The Best Thai Restaurant in the World on our way down to San Diego. The manger has been working there since I was a teenager, and is still kind of confused about what happened to the baby I had when I was 20, whether that's Iz or not. Who is 15, but it was all a long time ago, so I generally just smile and surrender to the menu and have a beer. The curried clams are a favorite of Seymour's, I've preferred the garlic en choy (pak boong) for 25+ years.



Every morning in San Diego starts with a long walk. To the best coffee and croissants place. Though now instead of being woken by Leo, we sometimes have to wake him. Which is fantastic. For everyone. This adolescence thing, it is not so bad.

We ended up spending a significant amount of time at the mall. As half of us came down without our swim gear. We are not used to malls and figured they opened up at the same time as Target, roughly? But no. They open at the same time as restaurants open for lunch. So we waited and played footsie in these comforting cocoon chairs.

Iz required her own trip to the mall for her own bathing suit, because she is a more advanced teen than her brother and requires sleeping in even later, say, around the time school gets out for the day, ideally. She also requires acai yogurt bowls.

OK, fine, we were there for the beach. We went to the beach every damn day.
It was wonderful. This is La Jolla Cove.
Click to embiggen.

Mali is a newly minted Adventure Time fan. This is her beachgoing version of being Finn the Human.

Her beachgoing was quite impressive, really. She spent hours in really damn cold waves that Leo would only immerse himself in partially and for brief episodes, and for which Seymour required a wetsuit. I stayed on the beach on a towel and observed as I do not do cold water unless I am scuba diving in full gear.

We went to Balboa Park and visited the Japanese gardens, because there are lots of paths to follow and we all like paths. Seymour has long-simmering, currently dormant bonsai dreams, and spent much time communing with the local examples and giving the girls extended explainers.

My mom was there too, not sure why she's not in these photos. We stayed at her house and brought her back her dog, who had stayed with us for a few weeks and endeared himself to our entire city and who slept on our bed every night despite being told no. (Puppy pout is a real thing.)

My mom is always very patient with us invading her home and causing iDevices and laptops to sprout from every available electrical outlet and wanting to eat Roberto's burritos and rolled tacos for every meal even though she is an excellent cook who rarely gets to cook meals because cooking for one is no fun. We owe her a home-grilled steak dinner.

Leo loved the Japanese garden, by the way. Here he is communing with the Zen rock garden, with his clear pure voice. I love the songs he makes up. Though it appears Blogger does not embed video sound? Ack. Here's the Vine version.

Leo has also discovered that it is fun to latch onto people's shoulders while you walk, because then you don't have to put so much effort into getting places and especially into walking up hills. Iz is a good sport about such things, much better than I am. I do not like people hanging off my shoulders though I will let Leo do it because he is of my flesh. No one else, though. These are both new bathing outfits btw. Yay malls.

If I cannot prove my mom was there, I can prove I was, on the drive home at least. Do you know where I am, Geeks, do you? These are the Vasquez rocks. From Star Trek. They were awesome. I can die happy. Mali kept posing and saying "Mommy! I'm making Riker Face!"

These are some really damn fine bouldering/climbing rocks. We'll come back, as we were all wearing Crocs or Birkenstocks, and therefore ill-equipped. Which was a shame. Leo wanted to Go! Go! Go! and it was not to be. Next time. Though not in the summer, as it's a famed heat stroke locale.

And then Spring Break was over.

I hope you had a good spring break. I hope you had a good April. My April was good but it wrung me out of words. Good night.

Please Stop Being "Understanding" When Autistic Kids Are Murdered

Robert Robinson. Photo: The StarPhoenix

No, this is not an age-progressed photo of my son Leo. This is a photo of Robert Robinson, a sixteen-year-old autistic teenager who was killed by his mother -- who then killed herself.

I have been too sick at heart to write about Robert's murder until now, because -- once again, and so predictably -- news outlets have framed the story around how hard things were for Robert's mother, how difficult it was for her to take care of him, and thus are perpetuating the awful message that murdering Robert was an understandable act. Once again the implication is that Robert's mother Angie, who could tell people what she was experiencing and could have walked away, was the victim; and that Robert, who relied wholly on Angie to communicate and advocate for him and who had no escape options, was ... his mother's trigger.

I am too distraught to write a full rant, because Leo practically is Robert Robinson, though a few years younger. So let me leave with you with a few critical points to cite when people side with murderers, not their autistic victims:

• An innocent autistic person was murdered. There is no defending or justifying this action.
• Loving mothers do not kill their children. If I read another story about a mother who "loved her autistic child so much" and "tried so hard" but then murdered that autistic child, I am going to throw my computer across the room.
• Lack of services need to be discussed separately. Of course autistic people need more and better services, and so do their families. But lack of services do not justify murder, and reporters need to stop writing stories that make this lazy, dangerous connection.
• We need to be aware of signs of caregiver fatigue and exhaustion. If parents are nearing the edge, that puts their kids in danger. Please be vigilant if you know a family that is showing signs of stress.
• Parents approaching crisis can walk away. Even if you believe "no one else can care for my child," it is better for your autistic child to be with someone who will not kill them.
• Behavior is communication. If an autistic child, teen, or adult is behaving in a way that appears aggressive or violent, there is likely a root issue, such as lack of communication options, illness, boredom, or sensory concerns. Please do everything you can to explore those possibilities.

Please note: Paula Durbin-Westby has put together a list of emergency resources for disabled people in danger, and for caregivers who feel they are nearing a breaking point.

Lobbying My Congresswoman on Behalf of Autism and Vaccine Policies: If I Can Do It, You Can Too

At Congresswoman Jackie Speier's San Mateo office,
with staffer Samantha Roxas.

It's funny, really, that I've been doing in-person policy advocacy lately. Personality inventories usually recommend I live in a cave by myself, and avoid selling real estate or doing any kind of political lobbying. So the fact that I've been  lobbying on autism and vaccine policies anyhow demonstrates how much I care about both topics.

Which is why I went to Congresswoman Jackie Speier's office today and talked with staffers including Samantha Roxas. Well, not the only reason. Last month, when Shot@Life sent me to talk about global vaccine policies with Senators Boxers and Feinstein's teams, they also sent me to Congresswoman Anna Eshoo's office. Which was a great meeting! Except I live 200 feet inside Rep. Speier's district. So I wanted to have a chance to talk with my own Rep's team.

From my perspective, the meeting went well. I spend my days so deeply involved in autism and vaccine advocacy that it's sometimes hard to calibrate my information firehose appropriately. Fortunately the staffers were interested, and asked good questions.

First we talked about the re-authorization of the Combating Autism Act, which expires in September of this year. The CAA is a matter I view guardedly. It's not that I don't want more government funding to go towards autistic people; I'm just worried about how that funding is allocated. As my concerns align closely with those of the Autistic Self-Advocacy Network (ASAN), so I explained my concerns using the five talking points from ASAN's CAA memorandum:

1) Re-Balance the Autism Research Agenda to Include Research on Effective Services, and Adults

We need to focus on supporting the autistic people who are already here. My son is starting to use assistive technology to communicate, there are many autistic people whose unaddressed sensory needs interfere with daily living, we need better housing, education, employment. The CAA budget is too heavily focused on causation research.

2) Prioritize Funding for Autistic Adults

Most autistic people are not children; most autistic people are adults. And my own autistic son is already a teenager. We need to prioritize supports and resources for the autistic adults who are already here, who have always been here.

3) Transfer primary responsibility for management of the Interagency Autism Coordinating Committee (IACC) from the National Institutes of Health to the Administration on Intellectual and Developmental Disabilities (AIDD) within the Administration for Community Living (ACL)

Another way to focus less on causation research and more on supporting existing autistic people -- make the department administrating the IACC one already focused on the interests of autistic people, rather than one that tends to view autism as a disease and fund causation research.

4) Change the composition of the IACC to require that at least half of the public members be autistic people and to add representation by DOJ, NCD, HUD and other relevant service-oriented federal agencies.

There are more than enough qualified autistic individuals to serve on the IACC. Busting the myth that such individuals are rare, and they myth that individuals who are non-speaking or have multiple disabilities could not effectively serve, were particularly rewarding areas of discussion with Rep. Speier's staffers. (I recommended they review TPGA's current Autism Acceptance Month interview series.)

5) Change the name of the Combating Autism Act to end the use of stigmatizing language. 

Some might dismiss this as quibbling over semantics, but I disagree. Language matters -- it influences thinking and attitudes. I don't want the government to tell people they should combat my son, or my autistic friends. Autistic people themselves don't like the language, either, and have started a #StopCombatingMe social media campaign.

And then the meeting's focus shifted to my other priority, Global Vaccines. I told the staffers that I advocate for vaccines, in part, as penance for the harm the anti-vaccine autism contingent causes with regards to public health, global health, and autistic people like my son. We talked a bit about how it's reasonable to ask questions about vaccines and autism, but how frustrating it is when people won't accept the answer that vaccines do not cause autism. About how hard it is to unscare people who fell for lazy media vaccine-autism fear mongering, and how silly it is for anti-vaccine blowhard Jenny McCarthy to pretend she bears no responsibility for the current outbreaks of vaccine preventable disease.

And we also talked about why our congress should continue to support global vaccine initiatives:

1) It's the right thing to do

A child dies every 20 seconds from vaccine preventable disease. Emphasis on preventable. Vaccines are a low-cost and effective way for the US to continue its tradition of international goodwill and support, in the best way possible -- by helping to save lives.

2) Diseases like Polio are just a plane ride away

Vaccine uptake in our country has been reduced, mostly due to irresponsible stoking of false autism/vaccine concerns. All those unvaccinated kids have no protection against vaccine preventable disease -- as recent measles outbreaks have demonstrated. If we help eliminate vaccine-preventable diseases in other countries, that helps protect American children whose misinformed parents are putting them at risk.

3) It's cost effective

The cost of vaccinations are so, so much less than the cost of treating a person who has a vaccine-preventable disease -- it costs $20 to vaccinate a child against polio, pneumonia, measles, and diarrhea, but can cost $100 to treat a child who contracts those diseases.

The conversation ended with warm affirmatives all 'round and me unable to keep in a "yay!" which I am guessing is not how many congressional staff meetings conclude. Again, I am not a professional lobbyist. But I did feel I made a difference.

Please believe me: if I can lobby, you can, too. Shot@Life has Global Vaccine Advocacy Guidelines, ASAN has guidelines for joining its #StopCombatingMe campaign. You don't have to meet with anyone in person if you don't want to -- you can write, donate, tweet, call, and just plain agitate. So, what are you waiting for?

Teh Busy: Quick Update, Long List

I swear to you that I am still here. It's just, teh busy, these last two months. So much so that I didn't even put up perfunctory posts in reaction to luminous BlogHer co-founder Lisa Stone mentioning me and this blog on CBS This Morning a few weeks ago. BAD BLOGGER. Maybe I'll talk about that when I give my BlogHer 10x10 talk in July!

Below is all the stuff I've been doing -- writing, interviews, talks, etc. What's not recorded in there is that Iz, now a sophomore in high school, is playing lacrosse and soccer, perseverating just a bit on makeup and bands, and is a better student than I ever was. Leo, seventh grader, is in the middle of a trial period for a dedicated AAC device, we're optimistic, plus he just had his annual IEP which was resoundingly positive -- last year was hard (seizure and other medical issues), this year is good. I don't know if it's puberty or just maturity that's got him in the current One Chill Dude phase, and I'm not taking it for granted, but I'm enjoying that he's so happy overall right now. Mali is still a fort-builder and a mythology lover, as befits a fourth grader. She is still the most fun ever, as anyone who hangs out with her can attest (still a button-pusher as well, though, watch out). We've started watching Adventure Time, which is surreal but quite awesome, and Leo likes it too.

I'll try to write a real entry soon! HONEST.  But here's the list, I'll slap up some photos below it.

April 2014

• CNN.com: Interview: Using Tablets to Reach Kids With Autism
• Oceanhouse Media: Blogger Spotlight for Autism Awareness Month
• Cafe Mom: The Stir: Interview: Moms Criticize Disney's New Rules for Kids With Disabilities
• Shot of Prevention: Vaccines and Autism: Something Old, Something New
  
• BlogHer: World Autism Awareness (or Acceptance) Day: Hope and More Hope for Autism Parents Like Me
  
• The Huffington Post: Interview: 34 Things Autism Is -- and 34 Things Autism Is Not
• SEPTAR: Workshop: iPads and Autism

March 2014

• Thinking Person's Guide to Autism: Keep Calm and Think Critically: The CDC's 1 in 68 Autism Numbers
• KQED: Interview: Higher Autism Numbers Announced as Feds Introduce Early Screening Program
  
• Dandelion Magazine: How iPads Can Help Your Child Learn, Communicate, Socialize, and Play
• Support for Families Information and Resource Conference, San Francisco, CA: Yes, iPads and Apps Really Can Help Individuals with Special Needs
• Shot@Life/United Nations Foundation: Walking the Capitol Hill Walk for Life-Saving Vaccines
• UCSF Developmental Disabilities Conference: Social Media and the Thinking Person's Guide to Autism (with Jennifer Byde Myers, Emily Willingham, and Carol Greenburg):
  
• National Autistic Society Professional Conference, Harrogate, UK: iPads and Autism: The Best Apps for Learning and Leisure

I visited York Minster as well when I was in the UK.
Jonathan Strange and Mr. Norrell had just finished filming onsite!

I interviewed Roy Richard Grinker at the NAS Conference
Transcription is a perennial bugger hurdle, but will publish soon.
Such a thoughtful, articulate, and charming individual.
(Need to transcribe an interview with Ron & Cornelia Suskind too.
And write that Legoland post. Aaaaigh.)

We're headed back to San Diego in two days.
We were just there in February.
We love San Diego.
(And visiting my mom of course.)

My fellow TPGA editrixes really are the best people in the world.
This is from our UCSF talk last month,
and next month we'll be descending on IMFAR!

Love my happy geek crew. xoxox