I took this picture yesterday in Stanley Park, Vancouver B.C., underneath the trees on a rainy, rainy summer day. I like to think that Evan would approve of this playground, as it has year-round shade and year-round changing smells of earth and wet and trees.
Thank you to everyone else who contributed the wonderful pictures in the Swingset Flowers for Evan Flickr group.
TweetA sad week, one in which I am at a loss for many reasons.
At the moment, I am wondering why I am Leelo's punching bag, why no approaches -- massages, extra exercise, extra attention -- seem to help him with his need for aggression. I try not to react at all, because sometimes a reaction is exactly what he is seeking. Then Leelo suddenly wants, shows, showers me with affection -- which I gobble up, even while I'm warily wondering when his tactile defensiveness will kick in.
I flinch each time Mali flinches when her brother comes near.
I am sometimes strangely grateful for the blows that prove, definitively, that my son is right here beside me.
I know his behavior is sensory, jealousy-based, behavioral. I know he's coming off his first week out of school. We've tapered off his access to the straws he likes to chew on, and have also stopped Claritin on his pediatrician's advice. Iz has been away at her first sleepaway camp, all week. A lot of changes in a short time. I can't really expect him to be happy about it, and I guess I should be glad that he mostly takes out his frustration on me.
Update now that I've had a few hours of sleep: Leo is a sweet boy; he can be naughty (he's seven, after all) but he is never malicious. This is why I'm re-reading Beth A. Glasberg's slim, helpful book Functional Behavior Assessment for People With Autism. The usefulness of the book is summed up in an introductory paragraph:
Over the years, research and experience have taught professionals who study behavior that making sense of a seemingly senseless behavior is an essential step to controlling it. This means that we must accept that these behaviors make perfect sense to the individuals engaging in them and then identify why. We must ask ourselves, "what purpose is this behavior serving?" and "How is this behavior benefitting my child?"I haven't figured this out yet, at least not to the point where we can help Leelo redirect his aggression. But we're working on it.
At least Mali keeps me constantly amused:
- Mali: "Is that Therapist Y's car?"
- Me: "Yes."
- Mali: "You mean the man with the square hair?"
- Mali: "...and my friend Sophie, and my friend Willow..."
- My Mom: "'Willow'? They sound like hippies."
- Mali: "They're not hippies! They're sisters!"
- Me, after Mali had reached out and touched a passing woman on her arm because don't you know that everyone in the world who is not already in love with my three-year-old will be forcibly converted: "Monkey, we don't pat people without permission."
- Mali: "I didn't pat her, Mommy. I PETTED her. eh-eh-eh. With an 'E.'"
TweetIf you would like to honor the memory of Evan Kamida in a small, lovely way, please take a photo of flowers at a swingset and post it to this Flickr pool:
Christa took the first picture. :)
TweetI thought Shark Fu went on vacation after BlogHer, which is why I'm just finding out about her brother's accident now. Another worst nightmare. Please send her your best wishes.
This has been a hard week for one of the hardest parts about loving and befriending and living with people with special needs: the HELPLESSNESS. The raging, raging helplessness.
But I wouldn't trust myself with a magic wand right now anyhow; I'd shove it up the ass of the first person who looked at my son sideways.
TweetPlease keep Vicki Forman and her family in your hearts.
In lieu of flowers, please send contributions to:
The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children’s Hospital at UCLA
David Geffen School of Medicine at UCLA
10833 Le Conte Avenue
Los Angeles, CA 90095-1752
I spent the early morning snuggling with Leelo in his bed and feeling lucky, so lucky, so blessed.
TweetIf you are a web designer who believes in serious social change and wants to get broader exposure for your ideals and work, please contact Laurie Toby Edison and Debbie Notkin of Body Impolitic. They would like a WordPress redesign of their site, payable in photography prints or jewelry.
These are good people to have on your side, not to mention in your portfolio.
TweetI've been avoiding the Michael Savage Brouhaha, because we don't reinforce inappropriate, negative, attention-seeking behavior in this house.
But then Left Coast Mom sent me this gem, from the inimitable Gene Weingarten:
"Do you remember Michael Savage, the poisonous right-wing radio talk show host whom I reported about in my piece on 24-hour punditry? Michael is back in the news for expressing the opinion, on the air, that "99 percent" of all children diagnosed with autism are "brats" who haven't been told to "cut the act out." He said: "They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life.'"
Savage is not retracting this, even though he admits it might be a little wrong. And I don't blame him. Getting things a little wrong is okay. I remain a supporter of Michael Savage, because I am a fan of his column "Savage Love," in which he deals forthrightly with the fact that he is gay and proud of it, and joyfully gives out highly knowledgeable advice on techniques for active, hedonistic, sexually adventuresome gay males like himself. I LOVE that column."
TweetI'm going to be writing about BlogHer 08 and our panel (Blogging About Our Children With Special Needs) for a while. They were that good.
There were several omissions in my initial panel write up, as I was relying on my cross-wired brain rather than notes. So, please know that CalifMom and Karianna talked about their children's challenges in "typical" classrooms, and I responded (though my response was cut short, because the session was too short). Here's all of what I wanted to say:
How do we help our kids navigate an environment where teachers, parents, and students have little knowledge of or compassion for their needs? Especially when our children look and most of the time act like the other kids? What do we do when our children's behaviors create difficulties, how do we promote understanding about behaviors that our children themselves are still learning to manage and accept?
Ideally, we should all feel like we can be honest and straightforward about our children's needs. We should do our best to foster an inclusive environment with the adults, and with other students. If we encounter resistance, we should redouble our efforts, thicken our skin, announce our pride in our wonderful children, and do our best to educate everyone at the school about the ways our children *are* typical as well as the ways in which they are not.
The number of kids who need accommodation even though they're in regular classrooms (and the number of parents who approach me, in confidence, for advice) is much higher than most would know, because parents do not want their children singled out. I understand this. Protecting Our Children is gut-level parenting reaction #1. But in my opinion, it can get in the way of accepting, and helping other people accept, kids who quirk. And shielding those kids now certainly won't make their lives easier if they become quirky adults.
You may think it's easy for me to write this when my son is not going to be "passing" anywhere, any time soon. I'm not the one shoving my kid into an potentially unfriendly educational spotlight. But I used to*. Leelo used to pass, or at least get a pass, when he was in preschool. So I know that in reality, it's fucking hard to be the one pointing out how your kid is different from the rest of the herd, when you just want him to BE one of the herd, be accepted without question by the herd.
But Leelo and I don't have to deal with any of those social school issues right now, and in some ways, it's a relief. I do not envy families with kids who still go to regular schools, especially with older children, increasingly savvy children. If the school has not encouraged inclusive attitudes at the teacher, parent, and student level, higher grade students can be increasingly uncomfortable or even cruel. My heart aches for the family of any child who faces casual or pointed ignorance, every school day.
I think families and whose kids deal with special needs in regular school environments have it much harder than Leelo and I do, in our happy County special ed bubble.
Please do what you can to promote inclusive environments. Please do what you can to help people see that our kids are just KIDS.
*Leelo attended a regular co-op nursery school. It was the most supportive environment imaginable. I was very open about his autism and his aide, and was available if the kids or parents had any questions. Supervisor M gave the class a puppet show about inclusion, asking the kids how they would feel in various scenarios that emulated Leelo's sensory needs. The teacher openly talked about Leelo to the other parents and children, who like Leelo were Mali's age -- three years old. Too little to be truly cruel.
But they still got that Leelo was different, and he still never once got invited over for a playdate. I worked in the classroom, I knew those kids and families and watched them connect while Leelo was left out. It sucked. But I wanted Leelo to be around typical kids, to learn something about how "typical" kids function socially, so I stuck it out.
The next year, Leelo was in a special autism kindergarten on an otherwise regular elementary campus. There were no efforts made towards any kind of inclusion, except tossing him and his classmates into the standard kindergarten recess. This was great until Leelo got away from his aide and pushed a little girl into her teacher, who fell down.
The girls' parents were outraged that "kids like that" were allowed to intermingle with their precious lamb, and demanded that Leelo be removed from recess. The principal and Leelo's teacher agreed. And then they informed me. I was not allowed to contest their decision (I did not have the same knowledge of inclusion and Leelo's rights, then).
Leelo had his very own special, solitary recess for the rest of the year. Which is particularly interesting when you consider that a similar incident between two boys the previous year had resulted in the kid who got pushed hitting his head on the asphalt and needing stitches. That was chalked up to "boys being boys," and neither was removed from recess. Even more interesting is that the kid on the receiving end had Tourette's.
After that experience, and because the class was not right for him either, I am quite happy to have Leelo at a segregated special ed school where everyone understands him. But this means I am leaving the real inclusion work, the fight on the street, to others.
I know you can do it. And I'll be back here at headquarters, gathering your ammunition.
TweetLeelo is out of school for five weeks. I want him to ease into summer gradually, because a sudden dash of all-mommy-all-the-time has historically not been great for his nerves. So he is hanging out with a new helper today, Therapist M. She is getting used to our son, so we will have more than one (Therapist R) babysitter who actually returns our calls.
Therapist M was referred by Supervisor M, which is pretty much all I needed to know. But TM really is wonderful; she has worked with huge violent boys and considers Leelo a pussycat in comparison. She is bubbly and sweet and kind and groks my son. She thinks he's a doll.
But poop still makes her uncomfortable. "Um, I think he's had an accident!" I hear, from upstairs.
No worries. I run up the stairs and survey the scene. An accident, yes, but definitely low-grade. Wipes will be needed, a change of clothes; but no carpet or hair or shirt or hands was involved. Easy-peasy.
As I help tidy Leelo up, Therapist M remarks with a kind but slightly uncomfortable laugh, "The glamour of motherhood, right?"
"Actually," I said, "This is fine. We were told by top experts that he might never potty train, and many of the kids at his school are still in pullups full-time. The occasional accident is really nothing to complain about."
"Oh!" she said.
"Yeah," I said, with a smile.
TweetI was excited to finally meet my co-panelist Vicki Forman. She lives and breathes and writes (and teaches) literature. She has the strength and talent to describe her own harrowing parenting experiences without resorting to melodrama, or detachment. She is a role model for any person with writerly aspirations.
She is also raising a strong, independent preteen girl in our body image-obsessed and materialistic society, and I wanted to get her advice, wanted to ask how she innoculates her daughter against toxic media messages. Her response: she surrounds her daughter with strong, principled, women; with role models.
As I think back on our panel, on the sheer brain power and bravery in that room and on that stage, I see the women my daughters know and are getting to know. I see Karianna in the front row, Liz Ditz on the side, Lisa Stone behind her, Gwendomama running the mic.
And then I see the women who sat in the audience with my nine-year-old daughter while she watched me take a public stand about my parenting, my beliefs. I see Jenifer Scharpen, SJ Alexander, Liz Henry, Debbie Notkin and Laurie Toby Edison. I see them sitting next to one very lucky little girl.
For now, I am not worried. We've got my daughter's back.
I wish all girls were as fortunate.
TweetLiveblog of our panel is up! Thanks HappyKatie.
Here is what I took away from the panel:
Though the session was a success, it was not long enough for our conversational and information sharing needs. We all had a lot more to say, the audience had a lot more to ask.
Susan was a great moderator: casual, confident, and articulate. She introduced us all with short bios and blog names, and then we were off and running.
Susan talked about why we blog about our children in the first place, why she started blogging. She said she was lying down with her son, trying to coax him to sleep, and she couldn't stop thinking about the collection of yellow post-its in the bottom of her purse, each covered with information she needed to pursue or share. When her son fell asleep, she got on TypePad and had a blog by the next day (and Vicki left the very first comment).
Vicki talked about her Literary Mama essay, The Mother at the Swings, which describes another mother's efforts to talk about the similarities between Vicki's son and her own child while obviously wanting to know more, know why. Vicki said that the conversation she described did not actually go as written -- at the time Vicki didn't respond to the other mother, she didn't know what to say at the time. But later she did. And she wrote that essay to help other parents consider what to say, for when they find themselves in similar circumstances.
Jennifer talked about the importance of blogging in promoting writing from special needs perspectives. When she put together a collection of short stories on parenting, she tried to include three describing having children with special needs, autism, NICU stories, etc. (Ironically, this was before she went through her own NICU and special needs parenting experiences.) In all but one case the publisher declared the stories to be "too scary." But online we can write whatever we like.
Kristina talked about her own blogging journey, about the initial need to release pressure. Her first blog was called "My Son Has Autism." It was very personal, very different from her current more information-based AutismVox. Her current blogging still includes glimpses into her son's life, but she no longer focuses on him like she used to. And she now uses photos sparingly, if at all. Some of these changes were inspired by feedback and comments from autistic adults such as Amanda Baggs, who asked her to consider what her son might think of how she was describing him, of his right to privacy. She also talked about the stands she takes in the vaccine wars, about drifting away from a DAN! regimen and GFCF diet, about being a classics professor, about ADHD in her household. She seemed very happy to get o speak directly to her audience.
I talked about how my friends and I use our precious time interstitially, how we can keep up with each others' busy and overwhelming lives through the "hive mind" of blogging. I described how my beloved blog readers (that's you!) rallied behind so many projects and fundraisers for Leelo, etc., that blogging inspired my friends and I take our efforts out to the real world, where we created both our local special ed PTA, SEPTAR and the Can I Sit With You? project. [I did not get a chance to talk about how I also blog because we have been so very fortunate, and that I think it's important to share the techniques and ideas and approaches we use with Leelo with people who might not have access to such information otherwise, or who might not have considered our perspectives.]
Susan then opened questions up for the audience. Again, please look to the liveblog for additional details (like these notes, it is not a comprehensive transcript). What stuck with me was:
A woman spoke about being the parent of an infant with Down syndrome. She said she was having a hard time sharing her emotional needs with her husband, how he wasn't at the same place as her, and was it okay for her to blog about that. Jennifer said that it was, absolutely, and that she should do it with an alias if she needed to (she said many more, very caring things, as did Vicki I believe). I reminded the speaker that every woman on the panel was several years past the stage she was experiencing, and that it was really important for her to know that if she was not able to find the solace and support she needed in her friends, family, or blogging, that there is absolutely no stigma attached to getting professional help. She really does need to take the very best care of herself right now.
Liz Ditz got up and talked about invisible disabilities like dyslexia, and the IEP process. She mentioned that I had always had relatively straightforward IEPs. [I want to note here that while this is true, the three main reasons why are 1) we live in a good-sized city with a decent Special Ed department budget, 2) Leelo's needs are moderate to severe; no one ever questions whether he needs services, and 3) We kept him out of the school system until kindergarten, so by the time he arrived, he had a comprehensive home curriculum and program and the district mostly only had to sign off on Supervisor M's suggested goals.]
Another woman asked whether it was okay to use humor, as she does; to write things like "helmet head" and "retard." [Clarification: it has been brought to my attention that SK was "worried that her child would be 'retarded,'" which is not the same as writing 'retard.'] Now, I wrote previously about how nice Jennifer Graf Groneberg is. Please know that she is also courageous, principled, and fierce as hell. She very eloquently but firmly replied that she did not believe in using words that take away from our children's dignity and humanity, that it was not okay. Either she or Vicki or Susan (sorry!) said that what the woman needed to do was get a girlfriend she could say those things to, instead.
It turns out that the "helmet head" woman was Stephanie Klein, who gave the BlogHer08 closing keynote talk with Heather B. Armstrong. I had no idea who Stephanie was when she asked her question. I figured she had to be a newbie blogger who didn't know any better, so after the panel I went up to her and asked if she thought that she could say those things because they were her kids, the way I can call my brother an asshole but she can't. "Yes!" she said, "That's exactly what I mean!"
Then I walked into the keynote and saw her on stage.
No, Stephanie, you shouldn't write such things. Especially with your readership. (Stephanie's response here.)
I know I've left out a lot, but that's all I've got for tonight.
Technorati Tags: blogging, BlogHer, BlogHer08, IEP, Jennifer Graf Groneberg, Kristina Chew, special needs, special needs kids, special needs parenting, Squid Rosenberg, Stephanie Klein, Susan Etlinger, Vicki Forman
TweetBlogHer08 was a vortex of wonderment in many ways, and not just for the adults. The BlogHeristas kindly arranged childcare (truly fantastic childcare) for us speakers, which is why my girls were onsite and got to meet Grover and Abby Cadabby in the BlogHer Sesame Street Lounge:
After this initial meet-and-bearhug, Mali decided to turn it on for her beloved Muppets. She sang "Somewhere Over the Rainbow" in its very loud entirety to Abby. (Which apparently made Abby's puppeteer cry.) She can work a room, our girl.
That was the only time Mali was happy to be taken out of childcare. Every other time I came by to check on her and give her a kiss, she screamed, ran away, and refused to come to me. When I finally did have to take her away from the fantasy land of attention, treats, crafts, and games that was BlogHer08 childcare, she cried for almost fifteen minutes. And she is not a crybaby. Today she spent most of the morning asking after her friends in the childcare room.
BlogHer staff, if you want to know whether or not to use the same people for childcare next year, Mali says yes please.
TweetHad a good chat with the lovely and charming Christa from Hyperlexicon last night (probably right about the time Kristina C was calling me on my accidentally turned-off phone to find out the address of the noisy restaurant where we were having dinner).
Christa and I talked about reading and its facilitating role in teaching our children skills, about whether the autism awareness of our children's generation will result in more accepting peers than those of contemporary adults on the autism spectrum, and -- naturally -- about our sons' love of Thomas the Tank Engine.
Leelo has an interesting relationship with the collection of wooden Thomas trains he inherited from his big sister. He goes for months, sometimes up to a year, without touching them. But right now he is in a train phase, and for the first time has even been laying tracks and acting out scenarios. Several different sets of engines go on the tracks, round and round in a circle. Then, "Oh no!" and he knocks the engines over. Then, "the engines are tired," and they all line up. Then "bye bye," and they all go back in the bin.
Then he asks for a different set of engines, by names, to act out this cycle anew.
I have never once been able to trick him by substituting one engine for another. Every Thomas aficianado-by-parenting-proxy knows that a lot of the trains look alike, and soon learns to distinguish between Edward and Thomas, even without Edward's tender. But there are sets of identical twins and triplets in Thomas Land, trains and cars who are indistinguishable from each other with the exception of their names. Yet all Leelo has to do is see the name painted on the train to announce who it is. Donald, Douglas; Bill, Ben; Mable, Jane, and Ada. He has never once made a mistake.
Now, I don't believe this is reading in the traditional and certainly not in the phonetic decoding sense. This is associating a collection of letters with a certain object. This is a form, a very basic form, of sight reading. And if Leelo can learn that "BILL" means Bill and not his identical twin Ben, then I do believe that eventually, he will combine that ability with his increasing skill at categorizing objects like Food and Animals, and he will realize that "TRAIN" means trains. All trains. All those tired trains.
And he will be on his way to reading.
TweetHere we are:
Our panel could have gone on indefinitely. The women on my panel could rule the world indefinitely. I went out partying with them last night and need to sleep indefinitely.
So, I will put down my BlogHer 08 panel perspectives later, after I catch up on sleep and time with my family.
The liveblog post from our panel is not up yet, but keep checking http://www.blogher.com/live-blogs-blogher-08. If you have pictures or additional links from our panel, please send them to me and I'll post away.
TweetI will be selling Can I Sit With You? Tees and books at the BlogHer08 Swap Meet, at 12:15 in the Olympic Rooms. Come by!
Then I'll be speaking on the other most important parenting panel at BlogHer, Blogging About Parenting our Our Children With Special Needs. Tower Room A.
TweetIf you're a parent, then you have a critical perspective on media and sexuality, whether you know it or pretend you don't. That is why I think Laurie Toby Edison led the most important parenting* panel at BlogHer08: Mirrors: Ours, The Media’s, Our Cultures’ and Our Kids’. Laurie's moderation, combined with the crazy-smart and articulate contributions of panelists Tracee Sioux of Empowering Girls: So Sioux Me, Kelly Wickham of Mocha Momma, and Glennia Campbell of The Silent I (also Mom-o-crats and Kimchi Mamas), plus the audience participation, resulted in a provocative conversation relevant to every last parent you know.
Please check out Debbie Notkin's comprehensive transcript of the the session.
Favorite quote, from Kelly Wickham: "My ass is *revered* in my culture!"
*"Mommyblogging" is as loaded -- though not equivalent to -- the word "cunt," and I avoid it. "Mommy" is what my kids call me, and in my opinion is a term used by children, not by adults who take each other's work seriously.
Technorati Tags: BlogHer, Debbie Notkin, Glennia Campbell, Kelly Wickham, Kimchi Mamas, Laurie Toby Edison, media, Mocha Momma, parenting, BlogHer08, raising boys, raising girls, sexuality, So Sioux Me, Tracee Sioux
TweetI am mildly obsessed with functionality and efficiency. Hence the neon orange hair. It's fun, yes, but it has also allowed so many friends, IRL and materializing from the Blogosphere, to find me instantly. I am just tickled at having writers like Shark Fu, Vicki Forman, and Kristina Chew find me, rather than my usual MO of slinking up and mumbling about how much I admire their work. Fun!
However it also makes it much more difficult to discreetly slink out of panels, etc.
TweetOkay. So those of you who have read Jennifer Graf Groneberg's book Road Map to Holland or her Pinwheels blog or her ParentDish column are probably wondering, "Is she really that lovely, really that nice, really that kind, really that thougtful?"
My friends, it is all true and even more so. What a treat it has been to meet her and talk to her in person. (Thank you, panel moderator Susan. Thank you, BlogHer.)
And I heartily recommend you read Jennifer's book. It doesn't matter if you have a child with a disability, doesn't matter if you do but your child is not like her child. This is a book about one of my favorite subjects: mindful parenting, parenting in the moment. Through crises, and through good times. (With an absolutely kickass resources and reference section.)
Hope to have a real chat w/Vicki Forman and Kristina Chew as well. But if those planets don't align, I've still got my interpersonal high for the weekend.
TweetTwo days ago, Leelo came home with a yearbook.
It was a school yearbook like any other, with individual pictures of the kids in every class, group class pictures, and two-page collages of each class's kids in action. All the kids' names were included along with their pictures.
This made me so happy.
Leelo's school is a segregated county school. All the students are kids like him, kids who need 1:1 supervision and attention. In this environment, the special ed world, confidentiality can be an issue: when Supervisor M and I have email exchanges with Leelo's teacher, we've been asked to refer to my son only by his initials.
I visit Leelo's school at least once a week even though it's twenty miles away, to keep in touch with the class staff. I see all his schoolmates there, and I see them on the bus, but I've never known any of their names.
Now I do. Now I know the children with whom my son goes to school. Now I can greet them, now I can feel more like a part of their community. Leelo's community.
Yesterday, while Leelo was getting off the bus, one of the other kids jumped out of his seat and ran to the front. The bus driver almost stopped him, until she saw that he had a yearbook in his hand. "Leelo!" the kid yelled, pointing at my son's photo in several places in the class collage, "That's Leelo!"
"That's right, Leelo goes to school with you, doesn't he?" I said.
Big smile from the boy.
Leelo and I walked into our home, and sat down. I opened his yearbook, and scanned the classes until I found the boy's name.
Now I know exactly who my son's friend is.
TweetJennyalice and I have started posting audio versions of the Can I Sit With You? stories. Check out our pilot, SJ Alexander's All's Fair in Love and Mucus (click the Play arrow icon mid-page).
Also, for the amusement of my dear friend mb:
This is me at this very moment, but this will NOT be me at BlogHer: Blonde, and sans makeup.
TweetMe, walking Mali down the hall: "...and you're such a big girl now, you're getting so tall."
Mali: "Oh! Can I be four years old now?"
She also didn't realize that my hair was gray on the top. "It's orange on the sides, though." Which means it's time to sneak off to the salon. My lid is mostly fried, so I'm quite curious to see what they'll be able to do with it. "They" being the new salon people I'm trying out, as my beloved stylist/doula is off having her own baby and can't attend to my head.
If you're coming to BlogHer and want to say hi, look for the woman with radioactive orange hair. Or a red fedora.
TweetSocial anxiety, you can kiss my butt. I am really looking forward to BlogHer!
Firstly, I am speaking, on an absolutely amazing panel: Blogging About Our Children With Special Needs. It's on Saturday at 1:45, and you'd better be there. My co-panelists are goddesses of special needs parenting writing: Susan Etlinger, Vicki Forman, Kristina Chew, and Jennifer Graf Groneberg.
Two short high school stories outline how I feel about the company I'll be keeping:
I loved being on the swim team, because I was pretty good, and won a lot of events. I started to think that maybe I should take the sport more seriously. Then we went to a swim meet at a high school across town, and one of their swimmers shut down our entire team. She swam the 500 freestyle -- that's twenty pool lengths -- doing the incredibly strenuous butterfly stroke. That girl was Janet Evans.The different between then and now is that I already know about the world-class talent of my co-panelists. Speaking with them will be an honor.
I also daydreamed about being a singer in a ska band. (Not that I could sing.) One day, as a bunch of us sat outside the ASB office eating our bag lunches, a friend casually trilled a line from The Special A.K.A.'s "Girlfriend." Her voice was like an electric current. I exclaimed, "Dude, I didn't know you could sing!" She laughed nervously, put her head down, and went back to her lunch. That girl was Gwen Stefani.
I'll also be selling Can I Sit With You? shirts and books and giving away stickers during the BlogHer Swap Meet, Saturday at 12:15 - 1:30, in the Olympic Room (second floor). I get to share a table with Minnie, who may sign her story in your copy of Can I Sit With You? if you ask nicely. I might also have a nine-year-old assistant helping me hawk those wares.
P.S. If you're not able to come to my panel but so wanted to, here's what BlogHerista Elisa Camahort had to say:
[Panel] recordings will all be collected by our partner ListenShare, and then distributed via iTunes etc. We should get links within a couple of weeks of the conference and will post accordingly.
TweetSpreading the word...
The deadline for general submissions to My Baby Rides the Short Bus was July 1, 2008. We are really pleased with the strong and thought-provoking essays we have received and look forward to publishing an amazing anthology. To fill some holes we see, we will still be accepting a small number of submissions on the topics listed below (or possibly others as suggested by you). We are particularly interested in receiving submissions from dads, young parents, older parents and/or people of color. Also, we have a disproportionately high number of essays about autism, and while we will definitely consider more of those, we'd like to see contributions for parents dealing with other disabilities.
*Working outside of the system--creating alternatives
*Living in an intentional community with a special needs kid
*Homeschooling or unschooling with special needs
*Out of home placements
*Kids growing older
*Influence of parenting a child with disabilities on intimate parental relationships/relationships with other family members
Please email email@example.com to discuss a deadline. If you email us, check also in your spam folder for a response-we have been finding a few messages have been filtered out by more sensitive emails, but we respond to everyone. Submission guidelines are available at www.shortbusbook.blogspot.com.
TweetIz was one of those newborns who didn't latch on, so instead of becoming a casually boobie-popping mom like the women who nurse their babies on every other page of Mothering magazine, I became a slave to trying to breastfeed, serving up bottles of breast milk, pumping and bottling breast milk, and sterilizing the pumping paraphernalia -- every two hours, all day and all night. I was a zombie. I couldn't believe people did this, couldn't believe having a baby was so hard. I didn't know how Seymour and I would survive.
But we did, and Iz eventually learned to nurse on her own. She became an easygoing decoy baby, the kind who tricks parents into thinking, "This is great! Let's try for another one!" Motherhood became suffused with the joy and delight of legend, even though it remained overwhelming. I would freak out if people asked me to watch their kids, though -- how could I ever take care of more than one? Iz took up all my time, needed all my focus, all my attention. I didn't see how I could take on any more responsibilities than just her.
When Iz was 20 months old, we had Leelo. He latched on immediately, I exhaled. The overwhelm increased, then receded. Yes, having two children was a challenge, but I found I was up to it. It became possible to bifurcate my attention, or even expand it to include more children than just mine -- though not by much. Surely, that was as much as could be expected from a parent? And who were all these people with three, four, or even more kids? How did they do it? When did they shower?
When Leelo was seventeen months old, we went on a family vacation with some fellow small-child-saddled friends. On the second day, the pediatrician father took us aside and told us that we should investigate Leelo's language and social delays. We did, and were handed an autism diagnosis. I was shattered. We were shattered. Then we went on the attack, with ABA, speech, and occupational therapies, specialized GFCF diets, cornucopioid DAN! supplements, and BioSet treatments. These approaches required enormous time and effort, but even so I made sure Iz got to do as many "regular" activities as possible. And we settled into some routines. Eventually I started to rediscover myself, spend time with my husband, write fiction, take long hikes with friends, and even practice my flute again.
Then we found out I was pregnant with Mali. By the time she arrived, we had jettisoned Leelo's BioSet and GFCF diet and all but the nutritionally reasonable DAN! supplements. We greeted Mali with a streamlined schedule and optimism, but even so our tiny house quickly felt like a cage full of howler monkeys. Iz wanted constant social engagements and conversation and hated homework and would act out. Leelo wanted more Mommy and needed 24/7 minding and would act out. Mali was an easy, easy baby, but even textbook newborns are not a part-time job. We almost lost our minds. Then we hired Therapist A to spend a few afternoon and weekend hours with Leelo. The needle came back out of the red zone, but, again, just barely.
Once I stopped feeling like I was hyperventilating all day long, I also stopped looking for cures for Leelo, and redirected my focus on his educational setting, his home program, his speech and occupational therapies, and setting up facilitated playgroups. I also started being more "out" with Leelo, and took him anywhere he might possibly have a good time. I wanted Leelo to feel comfortable participating in our community and society, and wanted our community and society to know and learn to feel comfortable with him, too. Leelo and I would teach the world that autism is not a crime, not shameful, and certainly not something people could ignore or pretend didn't exist.
But then Leelo started being violent. Unpredictably violent. Mostly towards me, but also towards his sisters and his therapists. And himself. Which is not an ideal behavior pattern for a diplomat: I can expect people to accommodate a kid who is quirky or different; I cannot expect them to put themselves at risk.
We have engaged the services of a behavioralist who specializes in severe violence and acting out. With her help, I hope we will understand the reasons for Leelo's violence, and come up with some positive reinforcements for encouraging him to redirect his violence into more acceptable (and safer) behaviors.
This is where we are right now. I cannot imagine being more stretched by parenting than I am right now. But I also know that I felt the same way at every step before this. Each stage felt like more than I could possibly handle. But, eventually I did. And now I am hoping that I will.
And this stage-based increase in competence and confidence is why I tend to believe parents who say they are overwhelmed, even if they are "luckier" than me, even if they "only" have one child, even if they are richer than Midas, even if it seems like they have all the free time in the world, even if their family is supportive, even if their crisis is something as seemingly frivolous as wanting a pedicure. I might smirk, but I also remember how it feels to be overwhelmed by one easygoing infant.
To everyone who has ever said, "I don't know how you do it" to me: Neither do I. I certainly never imagined that I could. But it's not as though I dove straight into this stage of parenting.
I ramped up.
TweetSoon my knowledge of U.S. presidential history and politics will be insufficient for Iz's needs, but for now we have some rollicking discussions, and I am highly amused by the ways in which her liberal Bay Area filters color her take -- or don't affect it at all:
Iz: "Why did Richard Nixon resign? I mean, wiretapping isn't nearly as bad as adultery. Why isn't adultery illegal?"
Me: "Well, adultery is illegal in some countries, but in the U.S. we consider it to be a private matter between consenting adults. What Nixon did was absolutely illegal. He resigned before he could be impeached."
Iz: "Oh! So Bill Clinton and Monica Lewinsky were in a polyamorous relationship?"
Me: "Um, no. Bill Clinton committed adultery. Which should be his own private business, even if it was morally wrong, and even if it was a very stupid thing to do. If he and Monica Lewinsky were in a polyamorous relationship, they would have gotten approval from Hillary Clinton beforehand, and then President Clinton wouldn't have committed perjury when he denied that the adultery took place."
Iz: "Oh. I don't think I want to be in a polyamorous relationship."
Me: "That's fine, it's not for everyone. And you have to be a fairly mature and confident person to make it work."
Iz: "I still think adultery should be illegal. People get hurt really badly."
TweetLeelo has taken to compulsively touching the floor//his feet/the seat when he gets up from a seated position (stool, toilet, chair).
Supervisor M would like us to help Leelo eliminate these behaviors, as they disrupt his ability to transition from one activity to the next, and are a form of stimming that is not sustainable, especially if they develop into more elaborate and more entrentched routines (they are also self-reinforcing).
She would like us to stay next to him while he is seated, and gently but firmly block him from bending over/touching the floor when it is time for him to transition. She hopes that, with our help, this obsessive behavior can be faded out much like his previous obsession with taking off any clothes that had even a drop of water on them. And then we can spend more time helping him learn productive behaviors, behaviors that will lead to more independence and hopefully more happiness -- which is what we all want for this cute sweet challenging boy.
TweetThere aren't many errands or outings left on which I feel comfortable taking all three kids by myself, but grocery shopping has always been one of them. Iz is good conversational company, and helpful in fetching items; Mali still fits in the shopping cart seat; and even though I still need to hold Leelo's hand, he is usually content to walk around and help load the cart with us -- especially if it means he can poach some baguette along the way.
On the 4th, somethings was different. I don't know what or why, but when I took all three kids shopping for BBQ fixings so that patient Seymour could enjoy the luxury of a shower, Leelo ran out of patience almost as soon as the sliding glass doors closed behind us. He yelled, and he kept trying to hit Mali. So much so that I had to ask Iz to steer the cart, as he is too strong for me to redirect with only one hand. Leelo spent that entire five or six minutes hitting me or trying to hit Mali. A rational person would have left, but I was so shell-shocked that all I could do was stay on target. I didn't have to buy that many groceries, and I figured that with Iz's help I could tough it out. Which I did.
And which, I realized after a beat or two, was getting me stinkeye from the rest of the shoppers -- all the people who actually liked or understood children must have been at the Fourth of July parade downtown. Even the staff at our small local grocery store was obviously flummoxed, because I usually have to refuse multiple offers of assistance when my children are behaving, but this time -- this one time I actually really did need help -- not one person offered to help me unload my cart, or help me to my car.
By the time I got into our car, I was crying, openly. This is not something Iz usually sees me do, and she was concerned: "What can I do, mommy? Is there any way I can help?"
I told her, "Thank you, sweetie. The best way to help is to promise me that if you see someone who obviously needs help like I did, you will offer to help them."
I cried all the way home.
When I got home, Seymour helped me unload the groceries. "Lucky Charms, huh?" he said, knowing that the cereal was not intended for our children, "That must have been a stressful trip."
I nodded. And I spent the rest of the weekend in a deep funk. What if this is the way things are going to be from now on, what if Leelo's behaviors keep getting worse, and not better?
It's been a few days, and I am feeling better. Leelo has had several successful outings since then, notably in twice-daily five-minute walks with me and his sisters, along a busy road, to the parking where Iz -- along with dozens of squealing girl scouts and their impatient parents -- jostles in and out of the camp bus. And I have been trying to spend more one-on-one time with him, be more in the moment with him. And consider that maybe, the answer is that he's just moody. Like his mom.
(And it's hard to stay upset about a boy who is so beautiful, anyhow.)
TweetTechnorati apparently only parses one URL at a time. So, even though this blog's URLs shroomhead.blogspot.com and www.squidalicious.com both resolve to the latter URL, to Technorati they are two separate beasts with two separate (and highly diluted) ratings.
I would so very grateful if anyone who has favorited or linked to me before would be willing to redo so at www.squidalicious.com rather than the blogspot URL. You can favorite instantly via this handy-dandy button, even:
And let me know if I can do the same for you.
TweetI get heartsick each time I hear parents of special needs children talk about how isolated they feel. If you have a friend or acquaintance with a special needs child, please believe that they could use your support no matter how competent and independent they may seem, how much help you think they already have, and despite how uncomfortable you may feel in asking.
Many parents of special needs kids experience social attrition after their child is diagnosed, and become even more isolated if their child cannot tolerate the family's former social schedule. Sometimes an email, or a phone call and a non-judgmental ear is all that is needed; sometimes parents really do need more than that. A few months ago, I wondered why I hadn't heard from a good friend for three days. When she finally surfaced, it turns out that she had had a 48-hour migraine and that her husband had been running herd alone for most of the weekend. I sobbed when she told me -- I would have been there, would have taken the kids, would have brought over dinner -- had I known.
But I understand why she didn't reach out. Sometimes, we know that our support community of special needs families is already so stretched that we don't feel we can ask for more than we already have. Some of our kids are really, really challenging and cannot be foisted off on a $5/hour teenager, no matter how much we need to go grocery shopping or spend thirty minutes sitting quietly in a poop-smell-free corner. We would hire more help if we could, but outside care for special needs kids can be expensive, and competent caregivers hard to find, even for those who can afford them. And some of us don't even want to be away from our children -- we just want more company when we're with them.
If you don't know what to do, how to approach, ask. We parents of special needs kids can be very thick-skinned, and I at least don't mind any questions rooted in good intentions. Ask your friends if they need any help. Ask how to interact with our children, how to make them blossom, how you can learn to love our children with this fierceness that would make a mama bear recoil.
Let your friends know that you are there for them, should they ever need your help. Don't wait until they reach out. They may be too embarrassed, too overwhelmed, or too depressed to ask themselves. Sometimes just knowing the support is there, should they need it, can make a huge difference in attitude.
P.S. I find it helpful to remember that quirky kids often have quirky parents.
TweetPlease welcome Don't Bite the Dog to the Blogsophere. Community is so critical when it comes to children with autism and their families (more on that in a moment).
Plus the author is a righteous grump, like yours truly. So many ignorant asses to kick when it come to the way our children are treated, so little time. Sigh.
TweetMy thanks to the anonymous commenter who cited the This American Life story about a family's wrenching decision to put their autistic son in a residential care program.
The story is not an easy listen. I certainly don't recommend to those coming off a three-day-weekend of intense depression rooted in their children's behavioral issues -- but it is more than worthwhile. Please forward it to anyone who could use some compassion towards autism families in the deeper trenches.
P.S. The story is a year old, true. But I fell off the autism information wagon in big way after my dad's death last spring, and am only now climbing back on.
TweetThanks, FDA. Way to pour syrup on that WAFFLE:
via my handsome and charming husband.
TweetLeelo adores They Might Be Giants, especially the song "In the Middle." Look how delighted he is, watching his favorite video of the song for the four thousandth time on YouTube:
The video is a charming homemade fan affair, with a goofy protagonist who reminds me of my cousin Greg, which then makes me sad because Greg moved to Japan five years ago.
Okay, I'm back. The video also features streets edged with enough piles of melting snow to remind me why I'm never moving my tender California ass back to Central New York. But I digress, again.
I just hope the movie's creators don't think their video has experienced a huge surge in popularity, when in reality it's just one happy, giggling little boy with autism, watching their movie over and over and over again:
I hope they know that their video is really, really appreciated.
TweetA friend wrote in, asking why we hadn't yet considered this form of fundraising for SEPTAR:
Though flashing our bits for charity is something I'm sure we'll consider, we're still doing fairly well fundraising via Can I Sit With You?. New story up today, Pat Gallant's Once Upon a Stairwell.
TweetHave you ever, or do you know someone who has, considered institutionalizing a special needs child? Would you feel comfortable discussing the subject in the comments? Anonymity is more than fine.
I feel like an ass for qualifying my query with "I'm asking for a friend," because the pain of considering this option is so very piercing, so very real.
The main issue in this case -- which hits close to home -- is unmanageable and unpredictable violence.
Thanks in advance.
Technorati Tags: autism blog
TweetLeelo has taken to swiping shoes and then taking them for a stroll. (Iz's friend Violet's pink Crocs, in this case.) This is a FYI for your next visit to our house: Keep an eye on your footwear.
It's so damn cute to see him tromping around in his dad's shoes!
He has also taken to completely unrolling the toilet paper, stuffing it in the toilet, and then flushing it. We have had many many recent plumbing emergencies. Seymour has become quite handy with the snake, so we're mostly covered, but just in case you're powdering your nose then next time you're at our place and thoughtfully consider taking the toilet paper from its perch atop the tank and affixing it to the holder, please don't. Thanks.
TweetHere's today's test to separate the flinty bastards from the soft-hearted super-sucks. As much as I posture about belonging to the former group, five hankies later am I firmly sobbing on the shoulders of the latter:
I consider America's Got Talent to be the televised equivalent of Reader's Digest. But I love seeing everyone in the show work so hard to be supportive of David and his family.
TweetWhy do I keep forgetting to permalink Salon's Broadsheet? Oh yeah, it's the fucking pink accents and the WHY WHY WHY? with the fucking pink accents. The same reason I instantly dismiss any book with martini glasses and high heels on the cover, unless someone I trust intercedes.
Daily knee-jerk reactions aside, I do adore the reporting in Broadsheet if not the styling of the web page on which it occurs. Without Broadsheet, I might have missed this excellent video smackdown of "medical cosmetics:"
(Be warned, the word "boner" is mentioned.)
I watched it with my nine-year-old, and she was appalled. She found the entire concept of dodging aging by poisoning muscles and injecting potentially lumpy substances subcutaneously "creepy."
"Why would anyone do that?" she asked.
"To avoid these," I said, as I made my forehead wrinkle.
"But that just happens!"
"Yeah, well, our culture is unrealistically obsessed with youth and perfection."
"But you didn't use any of those things, and you even look forty when you're really only 38!"
*snicker* "Yeah, well, I have three kids. YOU three kids. And anyhow, don't think it's only women who get those treatments. Men do it too. If they can afford it. Those treatments are really expensive. It's all pretty stupid."
"But I can understand plastic surgery, I mean you'd want it if you got your face blown off."
(Modern plastic surgery's origins come from WWI trench warfare and the resulting flood of severe facial injuries.)