TweetFrom Cecile Richards, President of Planned Parenthood Action Fund (I am on their mailing list):
Yesterday morning, on my way back from the high of the Democratic National Convention, I learned that Sen. John McCain chose Alaska Governor Sarah Palin as his vice-presidential pick.
What might have been encouraging news for women was just the opposite — somehow McCain had managed to find a woman running mate even more conservative than he is on women's rights.
It was heartbreaking news, especially on the heels of such an inspiring week. Right now there is so much shameless rhetoric from the Republicans about breaking the glass ceiling, especially from McCain and his running mate. What good does it do to break a glass ceiling with a woman who wants government to control women's reproductive health? That isn't the world I want for my two daughters.
A day later, and I'm still having trouble expressing the depth of my anger about McCain's choice of a running mate. This shameless pandering to women — with a woman who doesn't trust other women to make their own decisions about childbearing — has really got me going.
My dear friends and supporters, the stakes in this election just got unbelievably higher. More than ever before, the November 4 election is the most important vote for women's rights of my generation. And our actions in the next eight weeks — yours, mine, the Planned Parenthood Action Fund's — have never been more critical. Believe me, I don't say that lightly. It's time to get to work — and hard.
If you can only do one thing, it should be to tell every woman you meet that McCain and Palin are the most anti-choice, anti-women pair imaginable. Don't stop at just telling your friends. You can bet that I'll be telling strangers in the checkout line at the grocery store, the women I see at the gym, parents at my kids' schools.
Women trust other women to tell them the straight truth — and the straight truth is that McCain and Palin would take us back to a time when women had absolutely no right to decide whether or not to have a child ... zero. It's been widely reported that Palin is against abortion even in the cases of rape and incest!
And, yes, money helps us too — very much. That's how this all works. Your donations help the Planned Parenthood Action Fund reach voters person to person — conversations with one million women that tell the truth about John McCain and Sarah Palin. Bear with us over the next two months. We're going to be asking for your help, your contributions and your time a lot. Thank you in advance for doing what you can, when you can.
Times like these, it's hard not to hear my mother's voice in my head. I can tell you that my mother, the former governor of Texas and a remarkable feminist leader of her time, would have been downright outraged right now. What would have offended her most about McCain's decision to put Sarah Palin on the ticket is how utterly calculated, how awfully pandering it is to women. It is the worst kind of politics. Mom would have said, "Women voting for this ticket is just like chickens voting for Colonel Sanders."
We have the opportunity in Barack Obama and Joe Biden to elect a team that have always stood strong with us for women's health — end of story. I'm so excited coming back from Denver — but with this decision by John McCain, I recognize that everything for us is at stake.
Thank you, as always, for standing up with the Planned Parenthood Action Fund and the women Planned Parenthood health centers serve. We are quite a force, aren't we?
Cecile Richards, President
Planned Parenthood Action Fund
And then there's my own state's senator, Barbara Boxer:
"The vice president is a heartbeat away from becoming president, so to choose someone with not one hour's worth of experience on national issues is a dangerous choice.
"If John McCain thought that choosing Sarah Palin would attract Hillary Clinton voters, he is badly mistaken. The only similarity between her and Hillary Clinton is that they are both women. On the issues, they could not be further apart.
"Sen. McCain had so many other options if he wanted to put a woman on his ticket, such as Sen. Kay Bailey Hutchison or Sen. Olympia Snowe -- they would have been an appropriate choice compared to this dangerous choice."
-- Sen. Barbara Boxer, attacking Sen. McCain's veep pick, Alaska Gov. Sarah Palin.
TweetFrom Cecile Richards, President of Planned Parenthood Action Fund (I am on their mailing list):
TweetI am not much for the website shilling. Unless one of my rather kick-ass friends has launched or written something that simply must be shared. Two friends, in this case:
My dear old friend K.A. -- "old" in that she introduced me to the person who gave me my first Silicon Valley job at Electronic Arts in 1994 -- is at the helm of a new website for and about women: LimeLife. She and her crew are in Beta, which means they want as much feedback as you're willing to give them. Have at it:
Michael Procopio, otherwise known as Godfather M, recently took to his KQED/Bay Area Bites pulpit about the cookbook Hungry Girl: Recipes and Survival Strategies for Guilt-Free Eating in the Real World. Mr. Procopio just wants to make sure you understand the risks inherent in using Hungry Girl's recommended low-cal substitutes; some of them contain the same ingredients as sexual lubricants and hemorrhoid creams. (And not all pink-tinged vodka drinks with lime garnishes are Cosmos.)
Personally, I have always avoided food substitutes. They give me the willies. They make me feel like I'm eating Floam. If I really wanted to eat more yet not gain weight, I would research the calorie loads of the foods I eat regularly to see which I'm going to have to take out of rotation, and which ones I should eat more frequently. If I wanted to lose weight for whatever reason, I would make lifestyle changes; I'd drink and eat less, and exercise more. (And I would check in with my doctor to see what realistic loss goals and healthy weights for my body type and age would be.)
Making dietary or lifestyle changes wouldn't be easy, but they would certainly be less nasty than following the recipes in that cookbook. Ewww.
TweetIf you want your wonderful, fabulous story about your social experience in elementary or middle school to be included in the Can I Sit With You? project's second print collection, you'll need to get it to us by August 31st. ciswysubmissions@firstname.lastname@example.org.
Though we have more than enough material for the second book, we want to include as many voices and perspectives as possible. Please make good on your good intentions, and send your story in by this Sunday!
Please note that while Jennyalice and I are nice people, that deadline is a rock wall. Don't run into it headfirst.
TweetI hope you and your family are doing well despite your worries. Please know that even if your child does have autism, you are all going to be okay. The resources for and awareness of autism is general is much greater than it was in the past. You will not be alone. You should not have to make any decisions alone.
If you feel more comfortable getting an initial screening from your pediatrician, go ahead. But please know that many pediatricians have little autism experience. My son's first pediatrician said that my boy couldn't possibly have autism because of how responsive and loving he was (and still is). It is better to go with an autism expert, though your pediatrician can still make referrals for you.
The first thing you should do is call your local regional center to get an intake appointment. You should not need your doctor's referral to call them up and get into the system; you should be able to do this yourself. They will have a social worker call you to set up appointments, which may include a series of home visits and should include a diagnostic exam from one of their developmental pediatricians. Here is a directory of California regional centers; the one you go to depends on where you live:
The regional centers are very frank and straightforward; they are not going to do much hand-holding but they will get you started. They will also fund various resources for your child and your family, including classes and therapies, camps, respite care, etc. (They may not tell you about the extent of their coverage unless you ask.) Please know that their therapeutic and educational responsibilities for your child end at age three, at which time coverage for those needs will transition to your local school district.
For a comprehensive autism intake and screening, I would call Stanford's autism clinic:
UCSF and the UC Davis MIND Institute also have clinics. My son has had evaluations at all three places, and while they all provide basically the same services (comprehensive autism screening and recommendations for next steps), UCSF's staff needs work on their bedside manner, and the MIND Institute can be very difficult to get into unless you volunteer your child for one of their research studies (but then you can get all sorts of free screenings and may even get a small stipend). Kaiser also has a clinic in San Jose.
It may take a long time to get an appointment at an autism clinic, and the appointment may end up being months away, but make it anyhow. The time between now and that day will go by faster than you think.
You should set up the following additional screenings/appointments ASAP. Ask your peditrician for these referrals or orders:
- Genetic workup for the most common conditions that emulate or can include autism, e.g., Fragile X
- Pediatric neurology exam
Ideally, the regional center or eventually school district should pay for an in-home ABA program and therapists to run it, but between now and then you can start incorporating ABA-type activities formally or informally into your child's day.
Autism Speaks is a national organization that provides free general information about the early signs of autism, and family resources:
Autism Speaks also has a "100 Days" kit to help families through the "critical 100 days following an autism diagnosis." I have not used this resource, nor do I have any feedback on it, but it seems like another potentially helpful (and free) support option that is immediately available, which is what you need right now:
Please note that Autism Speaks is controversial for their sometimes negative focus on autism as a burdensome condition. Though I wish they were more inclusive of autistic voices and demonized autism less, their outreach and support efforts are still valid and useful. Keep informed:
I am also particularly fond of the Autism Games site, for ideas and activities about engaging autistic children:
For a book about parenting an autistic child, I recommend Susan Senator's Making Peace With Autism.
For a fantastic read about autism and being autistic, I recommend Temple Grandin's Thinking in Pictures.
Even if your child ends up with an autism diagnosis, no one can predict what that means for him or her. It is different for each child. That is why autism is a "spectrum disorder."
Please be kind to yourselves. Don't listen to anyone who offers you miracle cures or recoveries, or read books about such things. They will only sidetrack you into thinking about the child you *could* have, rather than the child right in front of you. Focus on your child, on helping her or him gain skills, on fighting for resources, on loving your child, and on parenting your child to the best of your ability.
You are going to be okay. You child is going to be okay.
Contact me whenever you need to.
Please note that the regional center and clinic resources are specific to California and The San Francisco Bay Area.
TweetYesterday's trip to the Monterey Bay Aquarium was a triumph, by most measures. There were no toileting incidents from anyone, minor or major, for the first time since my two youngest ventured into Underwear Land. Leelo loves the MBAQ so much that the usual crowd-spurred sensory overloads take more time to register, and we were able to visit all the parts he likes: Splash Zone with its Nemo fishies and nubbly coral reef tactile walls throughout, the Open Ocean tank where he could lie on his back and look up between the giant tunas and sharks and into space, the back outside decks where he could gaze on the waves and kelp floats and think and think, and of course the wave tunnel.
(Side note: Our Aquarium foray made me realize once again that my neon hair is just plain useful. Our friends were able to find me and my kids even in the dimly lit jellyfish/open ocean area. I wish this lid didn't take effort to maintain (note that I did not write "a lot of effort"). At the moment it is rooty and partially washed out but the little kids still looooove me.)
We arrived at the Aquarium relatively early, which was good for fewer people, but not so early that the three kids we were with could deal with the aquarium cafeteria. Hello Aquarium Staff: Your cafeteria has delicious food but for autism and indeed most families is completely impractical unless there are no lines.
We took off to, um, Bubba Gump next door, instead. And had mediocre food but found Leelo this awesome shirt:
He also got another shirt, a penguin tee from Splash Zone because his original shirt got wet and he flipped and I was going to buy him a new MBAQ shirt anyhow as he outgrew his last shirt and we gave it to Moomin. Leelo loves his new penguin shirt. When we got home he spilled smoothie on it and was so upset that he demanded, "PUT SOAP ON IT!" Which I am guessing means wash off the stain. He has never said anything like that before, so yay.
A good day overall, a successful outing overall. The ride home devolved into barely-contained hell for a period, but that is standard for traveling with two kids who have pronounced sensory issues and a three-year-old gadfly who knows exactly how to pull their sensory triggers. Leelo only tried to kick/hit Mali a few times, and then only when his patience was wearing thin.
Like my patience with that little sister, who decided two weeks ago that she is no longer potty-trained. She might go #1 if you catch her in time and put her on the pot, but otherwise has decided that her bodily functions are no longer her responsibility. I suspect that she got freaked out on the boat, as the bow thrusters that help the boat negotiate sideways movements such as getting into a specific spot on a dock were right outside our toilet, and they were LOUD and SCARY and seemed to go off right when her little bottom was most vulnerable. Also ghosts live in most toilets, did you know that?
I'm hoping this phase passes quickly, because I am so done with poop. Leelo had one bad day when we got back from Canada but has otherwise been almost perfect. I have no need for anyone else to take up the stench and mess slack.
Good thing Mali is cute. Witness:
Extraordinary powers or not, all who wander into Mali's castle invite peril and get the entangly spider treatment. I'm guessing Iron Man is going to get eaten first, and Tai Long will be saved for a midnight snack. (Those "cords" are poached from Iz's potholder weaving kit; to me this is a much better use of materials.)
Iz is still down south, in Anaheim Hills and Disneyland and San Diego with my mom, poor girl. Here she is engaging said mom about their SoCal agenda, on the way back from the boat. My girl is sitting in a seven-seat Beaver floatplane a mere 3,000 feet over the picturesque Gulf Islands. Me at her age, I'd have had my nose pressed against the glass sucking up the scenery and wouldn't have looked up once. But this is her third trip to these parts via these vectors ; the deal, to her, it is not big. I wonder at her overall context, sometimes.
But I am not taking her shopping for new school clothes this year. She has enough clothes, already. When she grows out of them, then she gets the new ones. Jennyalice implied that I am denying Iz a rite of passage. While I agree with her on the "here, you have $X and need to figure it out yourself" budget-learning aspects, I think Iz requires nothing else to be given to her right now.
It's me and Seymour and the two kids today. No nothing else, no nobody else scheduled today. Once Seymour and Mali wake up (it's their morning to sleep in), we'll hit the cafe and then Samuel P Taylor State Park. Seymour explored the park for a Quest segment, and says it is cool and green and has lot of converted-rail trails. Perfect for families. Perfect for families like ours.
Another day, another potentially successful family outing. Let's hope.
TweetMali and I have been home for four days now. (Iz went straight from the Pacific Northwest to San Diego with my mom, who also came on our fabulous boating trip).
Leelo was not happy to have his wee sister back home. Apparently he thought she was gone for good. So I am spending this week while they are still both out of school searching for distractions. Hiking in Butano with Jennyalice and Lucy was good, very good. All three kids blazed the Little Butano Creek trail there and back again, in record time, with no whining, and with only one banana slug casualty. The forest was, in Jennyalice's words, "primeval." Cool, soothing, green. We were all in a good space.
Which might be why we didn't really notice how tired those kids were. Had we not been so drunk with success, we might not have taken three tired hungry overactive children to a crowded family/tourist restaurant where we had to wait a lot longer than we were told, and staffed by pinched-faced and overstressed waitstaff who came over to ask us, "Are these [big gestures to two tables of tourists in corners] people going to be able to enjoy their meals? Because that's what we're concerned about. That these people will be able to enjoy their meals." Jennyalice and I looked at each other, I got shocked tears in my eyes, and said, "we're leaving," and we stood up and left, dragging one really unhappy autistic boy who had been promised bread and two preschoolers who sobbed and howled, "But we're soooooo HUNGRY!" through the crowded restaurant.
In hindsight I should have told her that we just needed bread. But I was too surprised by the waiter's calling us out. Now she'll never know that Jennyalice and I always, always order too much food and always, always overtip.
We're going back though. Seymour and I have been taking the kids to said restaurant for years, and it is one of five or so restaurants in which Leelo usually has a good time. I'm not letting one callous and compassion-challenged waiter piss in that pot.
Anyhow, the restaurant debacle is off my chest and off the point. We want to set Leelo up for success in outings with Mali, so this morning I'm taking them to the Monterey Bay Aquarium with Ep and Merlin. I am hoping that an early morning late August visit will mean fewer crowds, because while Leelo loves the Aquarium, he can't take it when we have to elbow our way past the other visitors. We tried going right after Christmas and had to leave early, even though we had Therapist A with us that time. Today it will be just us five, and hopefully fewer crowds. I want to see both Leelo and Mali have happy times "together." That is all I care about at the moment.
Request for Information: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders
Tweetvia Liz Ditz, who wrote: Please feel free to forward this to any person you think would be interested.
More information at: http://neurodiversity.com/weblog/article/171/
On September 15, 2008, members of the Services Subcommittee will meet to review all public comments submitted to date, and will present these comments at the next meeting of the full Interagency Autism Coordinating Committee, which is scheduled for November 21, 2008. Members of the public are invited to participate in the September 15 Services Subcommittee meeting by conference call; for more information, please consult the public notice posted on the U.S. Government Printing Office website.
Request for Information: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders
Notice Number: NOT-MH-08-016
Release Date: August 11, 2008
Response Date: September 19, 2008
Issued by: National Institute of Mental Health (NIMH)
The purpose of this Request for Information (RFI) is to seek input from Autism Spectrum Disorders (ASD) stakeholders including individuals with ASD and their families, autism advocates, State officials, scientists, health professionals, therapists, educators, and the public at large about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.
The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and, among other duties, requires that the IACC develop a strategic plan for ASD research. The IACC includes both members who are active in the area of ASD research funding, services, or advocacy, including several members who have family members with ASD, and one member with ASD. In March of 2008 the IACC established the Services Subcommittee, to assess and improve services and supports for people with ASD and their families. A previous IACC developed an ASD Services Roadmap, which is available on the IACC Website above. This RFI is a next step to obtain updated information about present and future services and supports to individuals with ASD, and their families across the lifespan.
The IACC is interested in receiving your input and ideas about high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. For example, information is sought in the following areas that impact services and supports across the lifespan: education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.
Please send responses to email@example.com no later than September 19, 2008. Please limit your response to one page and mark with this RFI identifier, NOT-MH-08-016, in the subject line. The responses received through this RFI will be collated, summarized, and provided to the IACC Services Subcommittee and the public. Any proprietary information should be so marked. The collected information will be analyzed and may appear in reports. Although the IACC Services Subcommittee will try to protect against the release of identifying information there is no guarantee of confidentiality.
A summary of the results obtained from the responses to this RFI will be available to the public on the IACC Website.
Inquiries regarding this notice may be directed to:
Azik Schwechter, Ph.D.
Office of Autism Research Coordination
National Institute of Mental Health
6001 Executive Boulevard, Room 8203, MSC 9669
Bethesda, MD 20892-9669
Telephone: (301) 443-7613
FAX: (301) 480-4415
Full disclosure: My husband is the online producer for Quest. He did not work on the segment itself, but advised quite a bit. I warned him, "They damn well better get it right." I think they did, e.g., the segment cites the dreaded "1 in 150," but explain what that stat means. I found the UC Davis in utero study sibling study fascinating, and of course you all know that Mali was part of the MIND Institude sibling study.
Mostly, I am relieved to see autism given the unbiased, platform-free investigative journalism treatment -- even the vaccine issue. No sensationalism or polarization here. Thank you, Quest.
Very interested to know what everyone thinks, please spread the word and links. Make sure you read the associated blog post, too.
I am fascinated to see yet another autistic child -- the initial girl, Meghan -- who like DivaLea's son and Kelley's son and Amanda Baggs -- looks as much like Leelo as a child with Down syndrome resembles his or her chromosomal peers. I'm thinking we should start a Flickr group. Contact me if you're in.
Look what their addiction is doing to them! The poor fish!
(This is one of the flounders in our bait tank aquarium)
Hoo hoo, we're having lots of fun during our last two days aboard, now in April Point on Quadra Island. It is not even picturesque here:
Sunset from the April Point Marina, Vancouver Island in the background
Here are the big girls on their floating water trampoline, which is different from -- though the same color and shape as -- their triple-blaster tubing rider that gets towed behind the boat.
I suspect that when these girls go back to school in a few weeks, no one is going to believe their "How I spent my Summer" essays.
TweetSo, today a pod of about fifteen porpoises came swimming and playing in front of our boat.
We initially saw them jumping off the side of the boat. Then we realized they were converging from all sides, and racing to catch up with each other. They leapt, they splashed, they raced, and they kept turning sideways to look at all the kooky creatures hanging off the front of the boat, frantically waving at them. The kids squealed and screamed and giggled and exclaimed, as did the adults. (Even so, Iz never once let go of Fairest, her most recent Gail Carson Levine book.)
Here are the girls looking at the dolphins:
We went shrimping and crabbing and fishing today, too. Sometimes we did not catch creatures we were hoping to catch. Sometimes we caught biology lessons instead:
But shrimp is still on tonight's menu. Especially if we draw the luck of the manager of Echo Bay resort, whose latest shrimp pot excursion yielded four hundred of Those Who Make My Bisque:
(I are holding it in front of the sun so you can see its BRAAAAAINS.)
We're still mostly doing a lot of this between our visits to various islands, bays, and coves:
Yesterday we went to Sullivan Bay on North Broughton Island. Every last house is on floats; there is nary a structure on land except a few water tanks. People there keep helicopters on their roofs, and float planes and yachts moored outside their front doors:
Earlier we went to Alert Bay on Comorant Island. Iz got to try poutine, we got to see some astounding art at the Namgis Recreation Centre and U'mista Cultural Centre, and we saw the world's tallest totem pole. We also got lost on an island the size of your thumb, but it was worth the wander to see the art adorning the exterior of so many homes on the island, and the the enormous murals covering the fronts of the local school and longhouse.
Carving on front of U'mista Centre
Base of world's tallest totem pole (173 feet) and Longhouse
Kicking myself for not verifying whether the building above is Alert Bay Elementary or the T'lisala'gilakw School. Kids in this area often do their schooling by correspondence in the uppermost grades.
At the moment we are in Echo Bay, but we're leaving in the morning for Blind Channel. All these small cove communities seem to have free and open wifi, which has been very cool, if not predictable. No cell coverage, though -- I spoke to Seymour for less than sixty seconds today; just enough time for him to reassure me that the horrible dream I had about Leelo had not had any repercussions in the real world.
We are all having the very best time ever. It has been emphasized to me that the girls deserve this, they need to have regular vacations, real family vacations without their brother. I still wish my son and husband could be here. It feels as though we're masquerading as a divorced family, really -- everyone keeps asking where my husband is. I doubt that my partner and I will ever get to break in this wonderful bed in our stateroom. Not together, anyhow.
But I am focusing much less on the bitter, and have almost completely succumbed to the sweet. This trip has been a treat and a delight, even if it is taking place in an alternate reality.
TweetObviously no one here is having a good time:
Two seconds to post. So far we've gotten lost in Alert Bay, Comorant Island, which is the size of your thumb. And we're in Sullivan Bay, where people have helicopters on top of their house boats. Uh oh, engines started. More later!
TweetPulled from my tweetstream for greater coverage and hopefully lots of forwarding: check out one salvo in Patricia E. Bauer's ongoing shred of Tropic Thunder's "retard" theme: http://tinyurl.com/6nqtjv
For more thoughtfulness on the subject, check out Jennifer Graf Groneberg's recent post: http://jennifergrafgroneberg.wordpress.com/2008/08/02/the-words-we-choose/
Jenijen pointed out Slurping Life's Conversation About Tropic Thunder With A Child Living With Intellectual Disabilities (Fanks!)
TweetWe're still in Port McNeill. The girls have been fishing several times, right off the dock.
Here is my favorite picture so far, which is Mali saying, "Please Mr. Fish, let my sister catch you!"
The girls' grandfather gave serious thought to every last detail on this boat, including how to make it grandchild-friendly. Hence a bait tank with an aquarium-like viewing front. Right now it is full of flounder, surf perch, and tiny salmon.
Being on the boat is so damn cool. Seymour, who has been twice before, said it was like being on a floating hotel, and he is correct. We don't have to do a damn thing except make sure Mali wears her lifejacket when she comes upstairs from our room. The staff lets us wander all over and explore the nooks and crannies and heads. It has reinforced my admiration for the absolute practicality of boat design: a place for everything, and everything secured in its place. Doors that latch to the wall when opened. Plates in drawers with acrylic posts between them to keep them from knocking against each other. Latches holding every last cabinet door shut. And this:
Not a bad idea for those of us who live in earthquake zones, really.
More practicality for shoving four kids in a very small space: Iz and Violet in their v-berths:
We're off to Telegraph Cove today. More pix to come.
TweetI feel as though there should be multiple copies of me right now: one person to handle Can I Sit With You? upcoming publication affairs and this afternoon's reading, one to take the girls on vacation to Vancouver Island tonight, one to be a proper host to Lea Hernandez while she's visiting with us this week, one to be the best possible mom to Leelo so he would have had a less difficult time being off school for this entire month, one to take care of my friends who are going through such rough times right now as well as those who are on vacation and whose diabetic cats need tending, one to pay proper attention to my husband (although I did sing him "I'm in the Mood for Love" in public, at Martuni's, on Thursday). I would certainly appreciate another me to do the laundry and cooking and attempt to keep the house tidy if not clean.
I love my life. But sometimes there's too much living going on all at once. I haven't had more than four hours' sleep in several days.
And I am excited our vacation, but heartsick too. Who wouldn't want to spend a week boating along the northeastern coast of Vancouver Island? But would you go if it meant leaving your husband and son behind? This is the third year I've been invited, but only the first I've been willing -- with Seymour's gentle encouragement -- to go. I know my semi-amphibious Leelo would love many things about the watery wild we'll be exploring, but being trapped on a boat would be torture for him. And for everyone else aboard.
I will miss my boys. I'll see them in every cove and whirlpool, wonder what they'd make of every orca and crab.
Take good care of them while I'm gone.
TweetMy thanks to Lastcrazyhorn, who has allowed us to publish her harrowing story about Asperger's and Middle School bullying on Can I Sit With You?
I can't help but think things could have been different if inclusive attitudes had been fostered among the students, as early as possible.
Stories like Lastcrazyhorn's make me sick with rage, make me fear for our children's social past, present, and future.
TweetMy Leelo. How sweet and wonderful he is when he is sweet and wonderful.
This is how me and my boy spent yesterday afternoon: lobbing vocal riffs at each other. Notice his recurring eye contact, his checking in, his desire to interact with me. This is not a remote boy. This is a boy who loves to play with the mother who adores him:
Leelo is out of school for several weeks, and at the moment is spending most of his time with me. This can be lovely. Today we went over to Ep's house to feed her cats, inject the diabetic one with insulin, empty the litter box, rain hellfire on the house-invading ants, and let Leelo and Mali frolic on the playground that used to be theirs. Leelo was visibly pleased to be in his old yard, and spent ten minutes snuggling in my lap under the oak trees, as a eucalyptus breeze wafted by and quail wove in and out of the nearby bushes. It was heavenly.
Contrast this with his sudden eruptions of such intense violence that they surprised Supervisor E, a veteran behavioralist with a specialty in curbing aggression.
Supervisor E came by yesterday to work with me and Leelo on food tolerance, his home-based visual schedule, my supervision and implementation of his independent work, and the violence. We had had a mellow and productive morning, initially. I set us some sequence-based fun tasks for him, and he spent fifteen minutes working completely on his own with only a single verbal prompt. I loaded TeachTown on the computer, and he successfully completed a nine-minute session without any input from us.
Then I sat next to him and told him that we needed to go downstairs. In less than a second he had grabbed me by the front and back of my neck, and was squeezing as hard as he could. Thankfully he is still a relatively small boy, with small hands, so I have only scratches and bruises. I reacted as I always do to his violence towards me: neutrality, no reaction other hand-over-hand placing his hands back at his side, and saying "Hands down, Leelo."
This is not the right approach, says Supervisor E. I should step up or back from him -- put distance between us -- and change my tone of voice. I should not be angry, but I should be firm and direct in staying "STOP." He needs to see that I am not approving of his behavior, and/or that it is not going to get him what he wants.
Neutrality and ignoring his behavior are appropriate when he targets anyone else, though, as he usually does so to make them react or get my attention. So if he does get one of his sisters, I am to go to them, comfort them, and turn my back/not react to him. If turning my back is safe at the time, that is; I have made it a policy to try to keep him in my sights.
Not that any of this helps when we retrieve his sisters from camp in the middle of the day and he throws a fit -- I can't let go of his hand, and I can't ignore him. What I need to do is ask the camp counselors to get my girls ready and hand them off to me when I arrive. There can be no waiting around. It needs to be a surgical strike, so that Leelo's dissatisfaction has no time to register before we're back in the car.
I know that Leelo is not the only one having a hard time with school being out of session. He is not the only one whose family and siblings are also having a hard time. I would be very interested to hear what other people are doing, how they are handling these really difficult dog days of summer.
TweetI was trying to explain the allure of Austen's Mr. Darcy to Seymour the other day. He didn't get it.
I told him, "That's because you were already like Darcy to begin with, you didn't need that formative drama to reveal your true character. Much simpler for me that way, anyhow, thanks."
He looked at me in disbelief. "No drama?"
"Well, we have drama now, but it's not relationship drama."
Happy anniversary to my wonderful partner. I can't believe it's been thirteen years since we rode that rocket together.
TweetCan I Sit With You? will be at Book Passage in Corte Madera (Marin County) on August 9th at 4 PM. Please come! Please tell all your Bay Area friends to come!
Jennyalice and I will chat about how we made CISWY? happen and how our model works (and how you can do it too, so that editors won't take your stories and eviscerate them without so much as a by-your-leave), Lea Hernandez will try to describe the magic that went into her cover art, and then we'll have readings of three of our most popular stories. We'll also have books and t-shirts for sale and signings, and Can I Sit With You? stickers to plaster on your unsuspecting friends' backs.
Here's the official description for you to include in your forward to every Bay Area person you know:
Shannon Des Roches Rosa and Jennifer Byde Myers discuss a brave new model of book publishing success, one in which authors retain all rights and profits, and social networks take the place of agents and traditional publishers. This approach resulted in Can I Sit With You?, a collection of frank stories describing real elementary and middle school social experiences. These heartfelt tales speak to anyone who ever struggled to fit in with the other kids at school, wondered about feeling different, or felt no one understood what they were going through.
Editors Myers and Rosa will describe how they made Can I Sit With You? profitable, cover artist Lea Hernandez (Comic Book Tattoo) will talk about her creative process, and authors Judy McCrary Koeppen, Michael Procopio, and Amanda Jones will read their stories.
We'd also love to read your own Can I Sit With You? story, and feature it as one of the new stories we publish every week. Send your tales of schoolyard social horror or hilarity to ciswysubmissions@firstname.lastname@example.org. Send them by August 31 if you want to submit for our second print anthology, to be published Fall 2008. If you said you'd send a story but haven't yet, know that I've got my Lidless Eye of Sauron fixed on you.
TweetI chose to spend the evening alone with Leelo.
I had been away from him too much lately, at a conference, at an out-of-town wedding with Mali, at an out-of-country family reunion with both girls. I wanted to spend some real time, some focused time, with my son. My son who is at his best, always, in one-on-one scenarios. My sweet son whom I have not seen at his best in at least two weeks.
Leelo and I watched as the rest of our family walked out the front door and on to a party. I closed my eyes in appreciation of the sudden quiet.
And then I heard singing coming from above my head. Leelo was belting out Bicycle Built for Two, Baa Baa Black Sheep, and The Green Grass Grew All Around. As loudly as he could. About an octave higher than he should. And with words not in the original songbooks. But recognizably, and with his usual unerring pitch. And only for as long as I was looking directly at him.
He came back down the stairs and sat with me. He puffed out his cheeks. "Say, 'Do this'!" I said, and then puffed out my own cheeks. "Do this!" he giggled, puffing out his cheeks. I complied, and he helped me make raspberries for a good five minutes, laughing all the while.
"I want you to sing!" he yelled. I sang him "Bicycle Built for Two, and he pounded the chair in perfect time to the off-key "music."
"Time to sing!" he yelled, and started warbling his favorite call-and-response vocal routine: "Looking at the XX." He kept singing variations on this line, moving the melody up or down in arpeggios and stair-stepping thirds, and having me repeat them back each time (and woe to me if my diction or pitch were off even slightly). But in the past the "XX" usually stood for three words: Teletubbies, computer, or eyebrows. This time, Leelo scanned the room and picked out a new word each time based on what he saw: Hat, Bear, Cat, etc. Intriguing.
"I want to go jump on the bed, Mom!" he yelled, running up to my room. I held his hands while he bounced high and then higher. "One, two..." he yelled. "Three!" I yelled back, and tossed him on the bed, mid-jump, flat onto his back. He laughed outright. This is a game we used to play in our old house. We hadn't played it once in our new house, not in the year since we moved here.
"Find the Double Bus!" he yelled (he really does only yell when he's excited), running into his sisters' room. Double Bus is another object he hadn't asked for in a while. I located the souvenir London tour bus, and handed it to him. He played with it on the floor for a while, then yelled, "Find CatBus!" We found CatBus in his toy basket. More pretend play on the floor. Then we had to find Double Bus again. Then CatBus.
Double Bus and CatBus alternating is a routine from at least two years ago, but then the language was different, then the language was always, "I want XXX," not "Find the XX."
Leelo is recalling previous routines -- routines from years ago in some cases -- and modifying them. Interesting. Different. Encouraging.
For both of us.
TweetI have fairly intense social anxiety. Most people don't believe me, because once I have been introduced to someone I will chew their ears off with my nervous chattering. But I lack the ability to walk up to people, cold, and announce myself. I physically cannot do it, not without some kind of catalyst or facilitator. Example: I spent the entirety of Guy Kawasaki's boisterous Alltop/Kirtsy party clinging to SJ like a baby monkey, or plaintively texting Susan about her ETA. I did not, could not introduce myself to a single one of the friendly, confident people milling about.
"No one with social anxiety would have that hair!" I heard, more than once, during BlogHer weekend. Possibly true, for a socially anxious person who had thought the matter through. But I just wanted people to remember me and perhaps toss me some writing or editing work, and have my online friends find me in the IRL crowds. I almost puddled when I realized that my lava-head spotlighted my wandering around the BlogHer breakfasts looking for someone to sit with: my loserhood must have been obvious to EVERYONE IN THE ROOM. Thank gods friends like LeftCoastMom, SJ, Liz Henry, Minnie, and Sarah Dopp let met glom onto them.
I made it through speaking on our wonderful panel. My voice quavered and I forgot half of what I wanted to say, but overall it came off well. Even so, the social aspects of the experience scrambled my wiring so completely that, even though I sat in two more panels that afternoon, I literally could not process what was being said. One of the speakers in one of those panels talked about the Can I Sit With You? project that I run with Jennyalice. I didn't find out about the mention until later, until someone told me, even though I was right there.
Social anxiety meant I was too nerve-wracked to eat for most of the conference. My complexion exploded. And apparently I was so tense, and spent those three days holding my body so rigidly, that when I got home and relaxed, my back started spasming. It was so painful that I thought I had a kidney infection (and my doctor's nurse practitioner thought I was drug-seeking -- lovely). The rest of my body felt like it had run a marathon.
These are not complaints. The excellence of BlogHer 08 surpassed all my expectations, was worth my jangled nerves and aching body. But attending and speaking and being "on" for three straight days almost laid me out.
Which is why, when friends called and invited us to their pool party earlier tonight, I sent the socially enabled members of our family: Seymour, Iz, and Mali. I stayed home with Leelo, because he's not always a fan of social gatherings, either. Plus he's good company, calming company, when it's just the two of us in a suddenly quiet house.
P.S. I am grateful to BlogHer for providing the peaceful sanctuary of a speaker's lounge. That small room, with its coffee and candy bars, saved my ass.
My mom is here! And I just got back from Canada. And a wedding in Monterey. And BlogHer. And all the kids are out of school. So, I can't find my head, and my fingers are going to lose their ability to type in about two minutes. But I will put up a real post tomooooorow.
Seriously about to drown in my surfeit of riches,