3.26.2010

Susan Senator Interview, SmockityFrocks Brouhaha, & Lost Classmates

Three short treatments of three notable events from this past week:

I had the honor of interviewing Susan Senator for BlogHer about her upcoming book The Autism Mom's Survival Guide. Here's an excerpt from what I wrote; you'll need to go to the interview to read Susan's own words of wisdom:
Did you know that autism parents can choose an identity other than Avenging Warrior or Martyr? That it is reasonable to aim for happy lives for us and our children, despite our kids' challenges? If this is news to you, then you need to read Susan Senator's forthcoming The Autism Mom's Survival Guide, A.S.A.P.
The Autism Mom's Survival Book is an important book, a desperately-needed book, a book that can help the next wave of autism parents sidestep the kind of post-diagnosis anxiety & depression that hit me in 2003 due to a lack of guidelines for my new Autism Mom identity.
Left Brain/Right Brain seemed to think the interview was useful. (Thanks!)

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Autism parents and advocates throughout the Internet reeled after Niksmom tweeted her dismay over blogger SmockityFrocks stating outright what so many autism parents fear: that people assume our children are spoiled and ill-mannered before they consider any other explanation. Like, you know, autism. Liz Ditz, Emily, and StorkDok have all written blog responses as SmockityFrocks's original post's comments are closed.

Updated: SmockityFrocks took down the post, with additional defensiveness rather than an apology. Jesus is still crying. The rest of us know how to use Google Cache.  

Update 3.29: Cache is gone. Here is a permanent Google Doc link to SmockityFrocks's original post: http://is.gd/b5AAy

Update 3.30: SmockityFrocks posted a sincere apology. My reaction: Excellent, we're cool, and thank you. I also left a comment on each blog post below, notifying the blogger about the apology if they hadn't yet updated (except Barb's Kim's and Down the Rabbit Hole, as for some reason their comments weren't working for this computer).

Here's my take, from a comment I left on StorkDok's site:
People rarely have epiphanies of compassion when they're feeling as defensive as Smockity. What I hope she's learned from this, whether it sinks in now or later, is that our children with autism deserve more tolerance and empathy than people might naturally give (although as [StorkDok] pointed out, I'm sure Jesus would have given the girl and her grandmother the benefit of the doubt), and that kids with autism have watchful, vocal advocates.
But hey, I'd like to thank Smockity for inspiring so many bloggers to write Autism Awareness Day posts! I'll list responses here as they come in (be sure to read the comments as well ... that's where some of the most helpful thinking is happening):
  1. Liz Ditz: A Message for SmockityFrocks
  2. Emily at A Life Less Ordinary: Thou Shalt Not Mock Other People's Children
  3. StorkDok: So this is what those Moms are thinking when they give me and my son "that look" 
  4. Elise at ASD2mom: Snarky Ignorance and Autism Awareness [3.28 Updated with Must-read postscript]
  5. Terri Mauro at SpecialChildren.About.com: What Those Snippy Typical Parents Are Thinking Behind Your Back
  6. JoeyMom: Judgments Aside
  7. Life as the Mother of Four: I Wrote an Email to SmockityFrocks but William Erased it so I Can't Print it Here
  8. Melissa H: We Interrupt Your Regularly Scheduled Programming
  9. Kim Wombles: When Life Gives You a Chance to Show Empathy, Get Defensive Instead
  10. AutismHerd: In Which a Mother Chooses a Mote Instead of a Pen
  11. BeThisWay: Hey parents of Autistic, Asperger’s and other ASD kids! Some of us parents of typical kids get it!
  12. Mittentime: I Don't Often Post About Autism
  13. Confutata: In Which Squillo Considers Motes and Eyes
  14. Barb Dittrich: All Eyes Are on You! [Christian perspective, really lovely]
  15. Kristina Chew at We Go With Him: Yes We Are the Weird Ones  
  16. Lynne S at Understanding My Son: Judgment 
  17. Tim at Both Hands and a Flashlight: Grace on Aisle 5 [hanky-worthy in a good way]
  18. BCPSS Parent at Surviving the System: Maybe It's Not Paranoia [This has really shaken her up; please leave a supportive comment]
  19. Raising Complicated Kids: Want a Little Challenge? 
  20. 9.39: Our Mall Meltdown, or, The One Where I Tell Smockity Frocks Where to Go
  21. Jean Winegardner at Washington Times Communities: When Autistic Behavior is Misunderstood
  22. Retired Waif: When Awareness Means Nothing [longtime disability advocate's perspective]
  23. Ramblings By a Liberal Feminist Geek: Autism Awareness (or Lack Thereof)
  24. Jennyalice: How a Person's Name Becomes an Adjective [If SmockityFrocks reads but one reaction, I hope it's this one.]
  25. Fuchsia With Yellow Polka Dots: Compassionate Disapproval for the Autism-Ignorant
  26. Melissa at Miracle Baby: It Really Does Take a Village
  27. Mom-Not Otherwise Specified: Autism Awareness and the Smockity Flap
  28. Down the Rabbit Hole: Oh the Joys of Judgmental People [Perspective from a person with autism who used to *be* that four-year-old child]
  29. ASDmommy at What We Need: What Comes Around
  30. Martian Momma: Frocking Hell - It's World Autism Awareness Day!
  31. Caitlin at Welcome to Normal: The Legend of Smockity Frocks
  32. Christa at Hyperlexicon: Untangling
  33. ShePosts: Smockity Faces Backlash After Inadvertently Mocking An Autistic Girl
---

Iz's Godfather Michael, with whom I've been friends since we were both younger than Mali, continues to demonstrate just how much-more-than-a-food blogger he is, for KQED Bay Area Bites. His last post was about an elementary school classmate of ours, the same age as Iz is now, who was murdered the summer before middle school. And, well, I'm not going to provide an excerpt. One read of Michael's post is all I can handle for now. But I hope you find it compelling.

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Grab bag: Leo's classroom setting is changing (more on that soon), he's been the sweetest boy in the world, and he's starting to eat carrots willingly; Mali is obsessed with Tudor Revival architecture (don't you call it plain Tudor! SHE KNOWS THE DIFFERENCE!) and finally had enough with Leelo pushing her and turned around and clocked him even though he has 60 lbs and 18 inches on her; Iz has declared that she will "go emo" if she doesn't get to see her beloved Violet (who moved schools this year) soon, and continues to be the world's most fortunate child as she is being whisked off to a ski hill with her cousins for the weekend. Which is good, because at the moment Leelo is my model child; I would give almost anything to separate those bickering girls for an entire weekend.

Hope your weekend is loverly. We're going to go see flamingos.

3.25.2010

Curing Harry Potter Hidden Talent Syndrome

I'm getting a little tired of hearing my eldest complain that she's not good at piano, singing, drawing, or other talents she wants to master -- because she's not instantly the best. I told her that Harry Potter's eleven-year-old Instant Seeker! and similar "hidden talent" tales of sudden mastery are wish-fulfillment fantasies, and that most people who master skills do so by dedicating themselves, by getting trained, by working really, really hard and not giving up.

Talent is a factor, absolutely. But so is baseline. And when it comes to her current obsession, singing, Iz has the baseline -- she's not tone deaf (first hurdle, ask Cyd Charisse), she has a sweet tone, her voice is clear. If she decided to work on her voice, she could be a singer. But she'd have to get training, and put in the hours. Which makes her balk, as she wants to sing NOW. So here are the three tales I told her about women who sing:
  • Gwen Stefani has natural talent, which I never knew about until one afternoon when our little group of skankers/mods was sitting around singing 2nd wave ska songs, and she piped in with the chorus from The Special AKA's Girlfriend. I told Z that once Gwen decided to be in a band, she worked hard, hard, hard on her singing and performing -- and she never gave up, not for the almost ten years it took No Doubt to hit it big. But she also didn't have proper training, and as a result almost blew her voice out after No Doubt's first big concert tour. Training is important.
  • Michelle Pfeiffer also has natural singing talent. But she doesn't usually sing unless a role calls for it. And when she filmed the updated Hairspray, she had to retrain her voice. She had to work hard, and get professional guidance.
  • Madonna had a serviceable but unremarkable voice for years, which was fine when she was satisfied with being a pop star and personality. But when she got serious about her singing so she could play the lead in the musical Evita -- a very challenging role -- she hired a vocal coach and spent months working on and extending her range. She was then able to showcase her new, stronger vocals on her next pop album, Ray of Light. Because she worked hard, not because she had natural talent.
Iz seemed intrigued. And she does know that hard work pays off, on a certain level. She has been working hard on her drawing, using Lea Hernandez's excellent Manga Secrets guidebook as her bible, and her improvement in one month has been dramatic. She sees that. But hard work is ... hard. And hard sucks.

I may have her listen to the KQED Forum (a fine show) interview with David Shenk, author of "The Genius in All of Us: Why Everything You've Been Told About Genetics, Talent, and IQ is Wrong." But I'd also appreciate any anecdotes you may have about working your ass off so you could be good, and why it was worth it. Iz is getting to the age where advice-not-from-parents is starting to carry more weight. Thanks.

3.22.2010

So Easy to Love (Modern Times Reading for My Baby Rides the Short Bus)

Honestly, I found it much easier to participate in a radio interview about Leelo than to read a My Baby Rides the Short Bus story about him to a room full of people. Jen thinks the difference is my social awkwardness, but really, I think it's because the radio interview moved too quickly for my emotions to overwhelm me, for me to be at the mercy of my raging love for my son, my fierce need to protect him, yet make other people see him.

No such luck at the Modern Times reading for My Baby Rides the Short Bus. That room, it pulsed with purpose, but also with such deeply conflicted love and sorrow. After three readings, I lost it, completely. I couldn't read when I was supposed to, had to switch places with Jen. I rallied for the Q&A afterwards, probably looked fine. But I felt gutted. And let me tell you why.

Leo has always been easy to love. He's a loving boy, free with his hugs, laughs, and vocal in his desire to spend time with the people he cares about. He wants to cuddle before he gets out of bed in the morning, wants to snuggle whenever he sits next to us, and his reaction to being pleasantly surprised is to jump up and fling his arms around our necks.

And that kind of carefree affection was not what the first three parents spoke about. They spoke about the difficulties of understanding their children, of children who didn't seem to connect at all, though they otherwise seemed so like Leo. Or they spoke of serious medical conditions and complications, of physical challenges and trials like our family has never experienced.

Even though I'd already read their stories and poems, already knew what the writers were going to read, I hadn't prepared myself to hear the stories in the authors' own voices, while seeing their eyes and watching their faces.

Still, I tried to get up and read. But I couldn't. I almost never encounter that kind of public raw, and it took me out. I started crying, started shaking. Hard. No matter how much I appreciate your stories, and how grateful I am to you for sharing them, I'm usually shielded by my computer screen or the written page. Or we're in more casual social situations, where the tone remains light-hearted even if the subject matter does not. The reality of parenting kids like ours rarely stares me in the face like that. Apparently, I'm not quite up to it yet. I'm so sorry.

Thankfully, Jen Silverman snuck up and handed me a magic pastille. Also Jen Myers took my place in the reading roster -- and her story, in case you haven't read it yet, is wittily written though not funny at all. Iz, who was sitting with me, patted my hand and reassured me, told me I'd be fine. I was, by the time Jen finished. I got up, protested that the person who had previously tried to read wasn't actually me, and tore through my story. (Which is partially about meeting Jen, and in hindsight made sense to read after the audience had already made her acquaintance.)

Here's what else happened when I wasn't in hysterics:

Iz and I rode in with one of the other MBRTSB authors, Thida. What a treat! We're going to kidnap her and bring her to Bad Moms Coffee one of these Thursdays.

The My Baby Rides the Short Bus editors, Furies, Fates -- Jen Silverman, Yantra Bertelli, and Sarah Talbot were all more luminous than imagined. They were also all at the end of individual traveling days and were very tired, though they still crackled with supernatural intelligence and energy. I wish we'd had time to sit and chat. Sigh. In another life.

The house was packed! People were poking their heads in through the door, trying to have a look. And the books sold out! (You should buy a copy.)

Iz came. Her Godfather came. Sarah (!) came. People who'd listened to our Forum interview came. Jen's family came, from several different parts of our state. Seymour couldn't come, because he was giving a talk in a different part of our state. (If you came and didn't say hi, please feel free to do so now. :) )

The Q&A after the readings was interesting. One woman said that she taught our children and thought they were wonderful. I lit up, anticipating hearing other nice things, as we rarely get positive feedback that doesn't devolve into "special angel" speak. So of course she devolved into special angel speak, asking if we didn't think our kids had a different purpose, like a 19th century missionary speaking about how the heathens they live among are touched by God. Sarah Talbot respectfully and forcefully disagreed, and I agreed with Sarah. Though I have to wonder if the first woman was using an outmoded verbal toolbox, and could actually have been saying something I'd be interested in hearing, had she used different terms.

Another woman asked about whether My Baby Rides the Short Bus included perspectives from parents of color. She said her son was already challenged by being black, now he has disabilities as well, and on top of that, she keeps getting asked whether she took drugs while she was pregnant with him (several heads exploded, after that statement). Jen Silverman explained that perspective variety was a goal of MBRTSB, and how the deadline had been pushed back several times while they actively tried to recruit authors, but eventually they had to proceed with what they had.

Which is what we all do, isn't it?

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If anyone knows who that final mom was or how to contact her, please let me know. I'd love to have a conversation with her, for BlogHer.

3.18.2010

Schoolhouse Rotten: Kids, Meds, & Myths

A person I respect and follow on Twitter and whose path doesn't cross mine in any other way just tweeted this Schoolhouse Rock: Conjunction Junction parody from MadTV. It makes fun of "overmedicated" kids. You know, kids like Leelo.



I've been fairly on edge with the emotion and exhaustion this week, so you know what followed: instant tears of outrage. But as I am now a mature lady of 40 years, I didn't call the tweeter out in public! I wrote them an email, instead:
I follow you on Twitter as I appreciate your acerbic wit and lack of pussy-footing. However I was saddened to see your tweet about the Schoolhouse Rock parody re: overmedicated kids. My nine-year-old son has fairly intense autism coupled with a lot of ADHD fun. His story is longer and more complicated than what follows, but basically, after years of resisting meds and trying every behavioral method we could instead, we tried the drugs. After a few mismatches (there is no one try this, get that with autism), we tried Risperdal. It has transformed both his and our lives. His self-injurious behavior had decreased, we no longer worry about getting him a protective helmet. There haven't been any new holes in our walls, or destroyed furniture. I am no longer covered in bruises and cuts. His sisters no longer scream and run when he enters the room. He is sitting next to me right now, calmly putting together a large floor puzzle. We are still an atypical family, but we are an atypical, *happy* family. I cannot express the depth of my gratitude to the medication that has made this possible.

Please understand that I do not mean to attack you, not at all. I love your writing, and attitude. But I do ask you to consider that, as Judith Warner wrote in the sporadically useful Huffington Post, there is a myth about overmedicated children. And I do know that my son's case is extreme. But running around in the quirky kids parenting circles as I do, I know a lot of families who've had to make similar choices with less affected children. None of them have come to their decision lightly, and all of them have wrestled with enormous guilt. I don't believe they deserve the additional burden of public ridicule on their quest to help their children.
What would you have said?

My Baby Rides the Short Bus: Our KQED Forum Interview

One of Leo's autism symptoms is delayed processing -- he often needs a couple of beats to respond to a situation, to sort through input and respond appropriately. Like him, my processing is often delayed, which is why it's taken me several days to mentally untangle the onslaught of awesomeness and emotion from last Friday's My Baby Rides the Short Bus events: our KQED Forum interview, and our Modern Times reading.

The radio interview with me, Jennifer Byde Myers, and Sarah Talbot (one of the three MBRTSB editors, who had to call in as she was mid-road trip) went well, I've been told -- I still can't bring myself to listen to it. The studio was cozy and intimate, which made it easy to forget that our conversation would take place in front of thousands of listeners. Jen and Sarah were naturals, on fire, and so well informed  -- plus Jen was supernaturally quick-witted and charismatic; someone needs to give that woman her own talk show. Here's the full episode:



Dave Iverson was a deft moderator, insightful and thoughtful, and I took notes on his methods for August's BlogHer autism panel. He started the interview with a quote that was not actually from the book, in case you were wondering -- it was from my BlogHer essay You May Approach the Short Bus. That was cool.

Here's what I remember about my participation: I tried to forget that I was on the air, to follow the threads as they emerged, and just have the same conversations we have whenever advocacy come up -- agreeing with Jen and Sarah that having kids with special needs doesn't make us perfect moms and doesn't make our children special angels -- it's not something we chose, even though we're damn good at it. I restated my good fortune in finding a friend like Jen, which prompted Dave Iverson to muse that we all need our own Jennifers (our friends on Twitter agreed). I made a plug for fully funding IDEA and then remembered I was on the radio and stumbled over the acronym (Sarah and Jen helped me out). I choked up about parents of typical kids who think kids with special needs are educational funding parasites. I revisited the dreaded Costco incident, and my helplessness and the other shoppers' seeming indifference during Leelo's raging public tantrum. We talked with callers about finding services for our kids and community for ourselves. I told listeners that I'd like them to focus on the beautiful nine-year-old boy underneath my son's autism diagnosis.

When the interview was over, Dave Iverson seemed touched, and said that he had skimmed My Baby Rides the Short Bus beforehand, but now wanted to read the entire book. Jen and I told him to either go at it slowly, or to get a glass of wine. MBRTSB is important reading, it's revelatory reading -- but it's not light reading.

And now I know how many of our friends listen to KQED at 10AM - a lot, because they emailed and tweeted and called us! It was too bad that the other two My Baby Rides the Short Bus editors, Jen Silverman and Yantra Bertelli, weren't able to join the KQED interview -- but if you want to know some of what they have to say, check out last December's My Baby Rides the Short Bus BlogHer Interview with all three editors.

After the interview, Jen and I waltzed across the street to Coffee Bar, where we enjoyed satiny-sweet Havana lattes and thought that perhaps we had just said important things about kids like ours to people who needed to hear them. It was a nice feeling. Don't we look like we we're feeling nice?


I'll have to try to write about the Modern Times Reading tomorrow...

3.17.2010

Holly Robinson Peete: Autism Style, Towards Clarity and Grace

I wish Jenny McCarthy would use her celebrity to fight for all autism families who need support. It's infuriating when she promotes her extremist viewpoints as majority autism community opinions, when she sullies autism parents' reputations by belittling mainstream doctors and scientists, and when she uses intimidation and fearmongering to divide our community. I resent her campaigning for "recovery" as the only worthy autism goal, her refusal to advocate for all families with autism. I really wish she had the compassion to be a hope bearer for all our children.

Thankfully, Holly Robinson Peete is more than willing to speak up for the rest of us. And she has done so graciously -- applauding Jenny's spunk and tenacity -- while declaring that it's time to "share the spotlight with other often overshadowed issues that profoundly impact [autism] families daily." What a relief to read unflinching statements like:
"....so many likely will never be "recovered" and nothing, I mean nothing, makes a parent feel more guilty than thinking you could've "fixed" your kid but... well you didn't or couldn't afford to..."

"...the fact that African American, Asian and Hispanic children tend to be diagnosed much later than other children (sometimes 2-5 years later) is extremely concerning and needs more attention."

"Autism is not a divorce mandate."

"The face of autism is changing. Our children grow up. Understandably, every parent stresses about what will become of their child with autism in adulthood."

"Autism Advocates Who Actually Have Autism: What a concept! ...  I've had some ask me to be very mindful about my language when speaking about autism. For example, several have said to me they cringe at the word "cure." Many have expressed that they feel this was their destiny, that they were born this way so stop trying to "cure me." Whatever our views or personal agendas, we have to respect that."
How refreshing, how delightful, to hear a real autism advocate's voice in the Huffington Post!

Ms. Robinson Peete's article is especially appreciated because it comes on the heels of a typical HuffPo Jenny rant. In Who's Afraid of the Truth About Autism, Ms. McCarthy went into full spin-and-attack mode, attempting to re-inspire her believers after an avalanche of formal, high profile decisions destroyed several pillars of the long-derided vaccines-cause-autism theory. (And mere days after Jenny's HuffPo piece, three additional rulings found no link between autism and vaccines.) The Who's Afraid... post is full of standard, inflammatory Jenny accusations such as:
"Who's afraid of autism recovery? Perhaps it's the diagnosticians and pediatricians who have made a career out of telling parents autism is a hopeless condition."
Well, I am afraid of celebrities who use their influence to peddle unsubstantiated and extremely expensive alternative autism "recovery" claims to frightened parents whose children who will mostly not be helped.

Parents need calm, rational advice to help them avoid such "autism cult" thinking. To reassure them that it's Jenny and Co. who consider "unrecovered" autism hopeless, not the other autism professionals and parents -- we're too busy rejecting any kind of "hopeless" thinking, too busy supporting our children, too busy fighting for their rights, for their visibility, and for their acceptance, quirks and all.

I think Holly Robinson Peete may get what our autism families need. I really hope so. And I look forward to seeing just how high she can raise that beacon of hope.

----

As of this writing, Jenny McCarthy's Who's Afraid of the Truth About Autism post has over 3,000 comments. Here's one of the keepers, by jim65, whom I'd like to thank for summarizing my own thoughts so clearly:
...[antivaccinationist commenters], this is for you. You may really *feel* like you're rallying around a just cause. You might really *want* to be making a difference.

You're doing it wrong.

If you want to get involved in autism research, then go to school, get an education, and get in a lab. If that's not what you want to do, then leave the science to the scientists, and get involved in your local autistic community. Volunteer. Donate. Raise general awareness. I'm pretty sure you mean well, but the fact is, all you are doing is confusing the folks that don't know any better, dividing the community as a whole, perpetuating a myth, and putting thousands of children a year at risk because their parents bought some of this bad science from someone like you who sounds like they know what they're talking about.
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P.S. I swear I will write about our My Baby Rides the Short Bus KQED Forum interview and readings later today!

3.15.2010

Breaks, Guilt, & Illness

Leelo & I have been sick for the past two days, and are spending all our time moaning and coughing on the couch together while watching Miyazaki films. I'm hoping to write up our KQED/My Baby Rides the Short Bus readings experience tonight, if I feel better. Until then, check out my BlogHer post about the autism moms' road trip, which turned into a meditation on guilt and the jettisoning thereof. Here's the first paragraph:
Guilt doesn't just eat parents of kids with special needs alive -- it disembowels us, especially when we think about taking time for ourselves. How can we go away? What if we're the only ones who can take care of our kids' needs? Or our absence would be a very big change, and any change results in air raid siren-volume tantrums? Or we know so many other parents who never get a break, who have no ability to take a break, who need a break worse than we do? How can we even think of getting away when ours lives are so intertwined with our children's? How can we possibly be so self-indulgent, so cavalier?
I would have written more, about establishing child care co-ops with other parents where everyone works shifts with one family's kids while their parents go away for the weekend, etc., but I wrote the post between 12:30 and 2:30 AM after finishing a work shift that I couldn't work the next day because I'd been asked to be on the radio and Seymour was out of town and couldn't help with the carpool and Leo's early waking the next morning. All of which is probably why I'm sick now. :) But I'd be happy to brainstorm with anyone who's having a hard time figuring out how to get the break they deserve.

3.13.2010

Fully Funding IDEA

If you had a chance to listen to me and Jen (and the inimitable Sarah Talbot) on KQED's Forum yesterday, you may have heard me make a plug for (and have temporary stage fright amnesia regarding the decoded acronym for) supporting IDEA, the Individuals with Disabilities Education Act -- the federal government's only-partially funded commitment to supplement the cost of special education for every child in this country who needs it.

Here's how you can take action and help all children in the United States who need special education -- whether you have a kid in special ed or not. I'm in California, so I have included contact information for my two senators; you should email your own senators.

I'll write more on yesterday's My Baby Rides the Short Bus events surreality later -- including why I burst into tears and couldn't do my reading, not at first. But for now, please consider writing your to your senators about IDEA, as I already have. It's easy. You can even use a form (Senators and Representative), if you'd prefer.

------
Find the Email of your Senator:
http://www.senate.gov/general/contact_information/senators_cfm.cfm

Email Senator Boxer (CA) :
https://boxer.senate.gov/en/contact/policycomments.cfm

Email Senator Feinstein (CA) :
http://feinstein.senate.gov/public/index.cfm?FuseAction=ContactUs.EmailMe

Suggested email :

Re : Full Funding IDEA Part B ( S 1652 http://thomas.loc.gov/cgi-bin/bdquery/z?d111:SN01652: )

Dear Senator ........... :

As your constituent and a Parent of a [ age ] year old Special Education Student, I urge you to do everything within your power to support Full Funding IDEA Part B ( S 1652 ).

The Individuals with Disabilities Education Act (IDEA) reaches every public school. Approximately 12 percent of public school students receive assistance through special education. These children deserve special attention and additional resources.

35 years ago, when IDEA was passed (1975) the law included a commitment to pay 40 percent of the average per-student cost for every special education student. That commitment has never been met.

School districts are being forced to redirect more and more dollars from their general education budget to cover the federal shortfall, which hurts all students — those in general education and those in special education. Since 1975, the unfunded federal portion has cost local schools and taxpayers more than $300 billion.

Thank you for your attention to this important matter. I look forward to your support.

Your name

............ ......... .....
County, [State]

3.11.2010

On the Air and In Person: My Baby Rides the Short Bus

Jennifer Byde Myers, Sarah Talbot, and I will be on KQED's Forum with Dave Iverson tomorrow morning at 10 AM PST, talking about our stories in My Baby Rides the Short Bus!

From the KQED: Forum website



Fri, Mar 12, 2010 -- 10:00 AM

My Baby Rides the Short Bus
Some parents of kids with disabilities say they don't want to be put on a pedestal for taking care of their children. We talk with contributors to an irreverent and honest anthology, "My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities."

Host: Dave Iverson
Guests:
  • Jennifer Byde Myers, contributor to "My Baby Rides the Short Bus"
  • Sarah Talbot, co-editor of "My Baby Rides the Short Bus" and assistant principal at a high school near Seattle
  • Shannon Rosa, contributor to "My Baby Rides the Short Bus" and BlogHer contributing editor, parenting children with special needs
And tomorrow night, we'll be reading at Modern Times bookstore in San Francisco, which is only one of this weekend's three Bay Area MBRTSB events:

(Information below swiped outright from Jennifer)
My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities
  • Friday, March 12th, 6:30 p.m. at Modern Times, 888 Valencia St., San Francisco
    Featuring local writers Kathy Briccetti, Thida Cornes, Kim Mahler, Jennifer Byde Myers, and Shannon Des Roches Rosa followed by a Q&A session with the authors and co-editors Yantra Bertelli, Jennifer Silverman and Sarah Talbot.
  • Saturday, March 13th, 7:30 p.m. at Pegasus Books Downtown, 2349 Shattuck Avenue, Berkeley
    Readings from contributors Marcy Sheiner and Andrea Winninghoff and editors Yantra Bertelli, Jennifer Silverman and Sarah Talbot. 
  • Sunday, March 14th, 5 p.m. at Green Arcade, 1680 Market Street, San Francisco
    Book release event with editors Yantra Bertelli, Jennifer Silverman and Sarah Talbot along with Tomas Moniz (Rad Dad) and Jeremy Adam Smith (The Daddy Shift).
 Excitement!

3.09.2010

What to Look for in a Behavior Analyst

If you are a parent of a child with autism, and are considering engaging a behavior analyst -- for ABA therapy, to help your child gain skills, and/or to mitigate disruptive behaviors -- how do you know what to look for? What does a behavior analyst (sometimes also called behavioral therapist) do? And what should you expect from them?

Special needs activist Noria Zasslow put together this list of shared expectations for engaging a behavior analyst. I have published it with her permission.

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Information a Behavior Analyst Should Provide To You

My training and expertise :
  • I have been practicing as a behavior analyst for ____ years.
  • I am certified by BACB (Behavior Analyst Certification Board).
  • My specialty is _____ (working with l children, teens, adults, parent training, etc).
I provide the following services:
  • I will help you with behavior you would like to change.
  • I will help you with maintaining a behavior, identify more appropriate replacement behaviors, develop a plan to teach those behaviors.
  • I will help you develop a plan to help you acquire a new behavior or improve your skill level.
  • I may provide training to others as well.
  • I will not work with you in any other capacity except as your behavior therapist or consultant.
  • I will provide a Behavior Intervention Plan if applicable.
How I proceed:
  • I do not make judgments about behavior.
  • I suggest ways of adjusting and modifying behaviors to reduce pain and suffering.
  • You will be provided information at each step in the process.
  • I will explain my assessment and the results of my assessment.
  • I will provide a plan for intervention and treatment and ask for your approval.
  • I will cooperate fully if at any moment you wish to terminate our contract.
  • If I believe that my services has become non-productive, I will inform you of my intent to terminate our contract and provide referral information.
  • I will work at your home only if you are present. It is not appropriate for you to leave me alone with your child or to ask me to take your child to places not directly related to my work.
  • If I need to cancel or reschedule an appointment, I will give you a 24-hour notification of cancellation. Please do the same.
I must comply with the Guidelines for Responsible Conduct of the Behavior Analyst Certification Board.

It is not appropriate for me to accept gifts, meals, or to be involved with your personal activities (family celebrations/birthdays, family outings).

I will request:
  • A list of any prescribed/ over-the-counter medications.
  • Your concerns/requests.
  • Your help to understand behaviors that you wish to address.
  • Questions about your family habits and daily routine.
  • Your opinion.
  • If you are dissatisfied with my services, please let me know. You may report your concerns to the Behavior Analyst Certification Board.
CONFIDENTIALITY
I do not disclose anything about our relationship. However the law provides confidentiality limitations in cases where:
  • I have your written consent to release information.
  • I have reasonable grounds to suspect abuse or neglect of a child, disabled adult, or an elder adult.
  • I am ordered by a judge to disclose information.

Fees:

The current fee for my services is ____

3.08.2010

Autism and Exposure to Toxins

This is a belated, flat-out scrape from the amazing Emily Willingham, scientist and autism parent extraordinaire. Anyone whose ears pricked up and stomach started hurting upon seeing last month's NY Times headline "Do Toxins Cause Autism?" needs to read Emily's analysis of and personal insights on the matter. Here are some excerpts, to hook you, and to make you click through to the entire post:
"...it comes as no surprise to me that mainstream science is paying attention to this potential link between these exposures and autism. A handful of chemicals--not of the kind we're passively exposed to but of the kind we take therapeutically--have already been linked to autism. These include valproic acid, which also is an endocrine disruptor.

"What we need to be careful about is talking about any links as established before the work has even been done. Nicholas Kristof in The New York Times tries to make this argument, but I'd call it a big fail from the get-go, as the headline itself is a screaming warning of "Do Toxins Cause Autism"? Aren't we just now trying to recover from the leading headlines relating vaccines to autism?"

....

And as someone who has seen the power of these chemicals to alter vertebrate development, I can only tell you what I do now. I do not use cosmetics, and I do not use shampoos or soaps on my children that contain phthalates, tea tree oil, or lavender oil. We do not use plastics with bisphenol A. I am careful about my purchases of fish oils and other fat-related items, checking to see if the persistent organic pollutants have been removed. I almost never microwave in plastic[Emphasis mine -SR]

3.07.2010

Autism Moms' Road Trip: The Pictures!

Whew! Jen, Susan, and I are home from 54 hours of whirlwindy autism mom Bay Area --> Los Angeles roadtripping, which we giddily tweeted via our own hashtag: #AMRT. I'll be blogging about/rationalizing our too-much-fun for BlogHer on Saturday. Until then, here are some visuals:

Did you know that with no small passengers requesting frequent pit stops, one can drive from the Bay Area to L.A. in less than six hours? Our first L.A. stop: Versailles Culver City! Tamales, sangria, platanos, y Moros y Cristianos. Food so good I was tempted to pick up the plate and lick it clean.

Outside MOCA, initiating a weekend of Jen/Susan Foursquare smackdowns. (I think Jen eventually did become a Mayor -- of a Union 76 station in Buttonwillow, CA.)

At MOCA: Doug Wheeler's ethereal, Willy-Wonka-TV-studio-style Room 669. Plus my toes!

 
 Absolutely perfect sidecar, courtesy of the Beverly Hilton's charming bartender Jose. Jen & Susan agreed, as they had one each themselves.

 Deconstructed gravlax at my brother-in-law's new restaurant (the visiting of which was our roadtrip inspiration). The smoke-filled chamber lets you fine-tune flavor intensity. And those are fried capers on the plate -- super nom for adventurous home cooks.

 Risotto carbonara with yolk drizzle. My dinner. Beyond luscious.

 The diners (Minus my lovely SIL, who took the picture). Recognize anyone?

Being very L.A. and dining alfresco at Quality. Right before I found the world's awesomest dress for BlogHer10 at PetroZillia (eep!). After which we wound our way back to reality, with renewed appreciation and zest for all that our realities mean.

Disclosure: We were conscientious economy-boosting consumers, received no promotions, and paid for everything ourselves -- including dinner at my BIL's restaurant.

3.05.2010

Leaving You Well Informed. But Definitely Leaving.

February ground me into a fine powder, especially the last two weeks. And I was relatively lucky - I did not have pneumonia, nor kids with pneumonia. But I was still operating below capacity, which is why I'm only now passing along this important information about the very best current literary and online resources for autism families:

The lucid and insightful Kyra Anderson, co-editor of the new autism and parenting collection Gravity Pulls You In, recently let me interview her for BlogHer. I cannot stress how valuable I found the collection of "perspectives on parenting children on the autism spectrum," how touched I was by the parents' love for their children, and how much I wish this book had been available when Leelo was first diagnosed. Here's Kyra on why the book needed to be:
"Vicki [Forman] and I started talking about putting together a literary collection of writing about parenting kids on the spectrum where the writing was about autism and wasn't about autism, where the stories transported us to somewhere deeper, somewhere transformative. We thought about how many families were affected by autism and all the people whose lives intersected with theirs: extended family, neighbors, friends, teachers, therapists. We knew we couldn’t be the only ones who'd want to read it."
I am greatly enjoying the privilege (such a privilege) of interviewing strong smart advocates like Kyra, Vicki Forman, Alison Singer, plus Yantra Bertelli, Jen Silverman, and Sarah Talbot for BlogHer, and  hope you enjoy reading what they have to say.

My (and your) next BlogHer interview treat is Susan Senator, who through Making Peace With Autism was the first person to give me permission to focus on Leelo, not just his diagnosis. Susan has a new book coming out at the end of the month, The Autism Mom's Survival Guide. It is another much-needed dose of positivity for autism parents. If you have questions for Susan, please leave them in the comments and I'll do my best to incorporate them into the interview.

As long as we're talking about the very best literary resources for parents of kids with autism, I have to plug Bertelli's, Silverman's, and Talbot's My Baby Rides the Short Bus, and not just because it includes a story of mine. Though My Baby Rides the Short Bus focuses on all kinds of quirky kids, not just those with autism, its stark honesty and examples of advocacy in action complement Gravity Pulls You In's love and grace and The Autism Mom's Survival Guide's cultivated positivity. (Bonus: Jennyalice and I are going to be reading our stories from MBRTSB next week, in San Francisco. Please come!)

I recommend all three books as a set, for anyone who loves or works with a person with autism, but especially for parents of children with a new diagnosis.

Another resource for autism parents and families is the latest issue of Disability Studies Quarterly, which focuses on autism and neurodiversity. The list of contributors is impressive, and includes my friends Susan Etlinger and Kristina Chew. Please pass it on to anyone who needs a good autism resource now, or while their (your) three books above are on order.

I'll tell you what else is helpful for autism parents (or indeed any parents): taking a break. I'm hightailing it out of town this weekend, and I'm dragging two autism mom friends with me. Two very smart, sexy, also extremely tired autism mom friends. We're roadtripping to Los Angeles. We're staying at the damn Beverly Hilton (super discount mojo FTW!). We're going to my brother-in-law's amazing new restaurant in Culver City, and we're meeting three other smart sexy friends there. We'll go see museums. We may see tar pits. I suspect there will be as much sleeping as drunk tweeting. But I'm not taking any autism books with me, no matter how fantastic.

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