5.28.2014

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.


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. 

5.22.2014

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.)

5.08.2014

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.


5.02.2014

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.

5.01.2014

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.
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