TweetTwo years ago, my family hit a financial rough patch. We weren't alone in being broadsided by the free-falling economy, and we weren't as badly affected as many others, but it wasn't good. I needed to find a job, one to supplement our income, one that could keep the roof that we'd gambled everything on over our heads.
But who would hire me for anything other than short-term writing or editing gigs? What kind of company would take a chance on me, would risk a position on a frantically busy mom-of-three who was already juggling several other projects?
I'll tell you who: BlogHer.
And I'll tell you what: I'm not the only person they've bet on. Every time I go to a BlogHer event, I encounter more BlogHer employees who've been plucked from the Blogosphere. Wonderful people who couldn't deserve it more, who made me even giddier to be a part of such a fast-thinking, community-centric, resource-optimizing organization.
Since I started my BlogHer job eighteen months ago, my husband and I have made a lot of changes. He has made managing and streamlining our family finances his part-time job, and he kicks ass at it (I keep telling him he should consult). We're budgeting better, and our finances have improved in general. I think we're going to be OK.
I've also been getting more speaking, writing, and consulting gigs, which are thrilling. And there's the fantastic Thinking Person's Guide to Autism blog-to-book project which will the set autism community alight once we get the book out -- in May, or June. It really needs my attention.
But getting everything done, and done well, means something has to give. In the past year or so, that something has been sleep. But now that our finances are more stable, that means ... the BlogHer job.
It's time to leave. It's time to pass on to someone else the chance I was given.
I'll still be writing columns as BlogHer's contributing editor for parenting kids with special needs, but my behind-the-scenes work is all done. My last shift is today.
So, I'd like to thank BlogHer in general -- and producer Jenifer Monroe specifically -- for being there when I desperately needed support. And if, by chance, you encounter that rare person who doubts the Blogosphere's ability to make a real difference in someone's life, just tell them my BlogHer story.
TweetTwo years ago, my family hit a financial rough patch. We weren't alone in being broadsided by the free-falling economy, and we weren't as badly affected as many others, but it wasn't good. I needed to find a job, one to supplement our income, one that could keep the roof that we'd gambled everything on over our heads.
Speaking of BlogHer, I have a new post up as Contributing Editor for Kids With Special Needs, about our kids' complicated relationships -- and how sometimes Leo's behavior is because he's a brother, not because he has autism. And how we spend a lot of time teaching Mali to separate Leo's actions from his person: "...while she can be mad about what he does, it is not OK for her to make him feel bad about who he is." Here's an extended quote:
We don't ever leave our youngest daughter Mali alone with Leo, her ten-year-old big brother. It's not safe. Leo's intense autism may complicate his understanding in some ways, but he remembers very clearly that until he was four years old, there was no Mali and he was Mommy's baby. He has no problem showing his antipathy through yelling and pushing. Understandably, Mali is not a Leo fan, though she tends to blame Leo's autism rather than Leo himself. While I know we can keep Mali safe, I worry that these two children I love so fiercely might hate each other. And that breaks my heart.I'd enjoy hearing about other families' sibling interactions, especially positive ones, and how you shape, mold, encourage, manage, and direct them.
To address both areas, I've been updating our iPad Apps for Autism spreadsheet with links to iPad Fundraising & Donations, as well as Research & Education links. I've pasted in the current listings below, but will be updating and expanding the list as more resources come in -- or are brought to my attention (hint, hint).
If you want to help a child get an iPad, look through the Fundraising & Donations section for ideas on agencies that are donating iPads to kids in need, or for instructions on how to run your own fundraiser (another hint: fundraising is really easy).
If you are hitting roadblocks with insurance companies or school districts that want official research to justify getting a child an iPad, look through the Research and Education links. Though, as I've said before -- the irony in Leo's case is that he probably wouldn't have qualified for an iPad as an AAC device, since he speaks "fluent requesting" -- yet his iPad has improved not just the quality of his learning but increased his learning opportunities -- he can learn anywhere he can take his iPad
If you'd like to help out a specific child in need of an iPad, consider donating to the Sahara's Voice iPad campaign. Her family is trying to raise funds not just for their own child, but for five other families as well.
I'm very proud of SEPTAR, the local Special Ed PTA I helped co-found -- because of our own successful fundraising, we were recently able to donate ten iPads to our district's Special Ed department! We're doing real good and making a real difference on a local but district-wide level -- more reasons to consider starting a Special ED PTA in your own area.
iPad Resources - Fundraising and Donations
- Conover Mobile Technology Grant: www.conovercompany.com/grants
- Danny's Wish: How to Apply for an iPad Grant: www.dannyswish.org/news-events.cfm/id/86386
- HollyRod.org iPads for Communication campaign: www.hollyrod.org/ipads-for-communication
- iHelp for Special Needs www.ihelpforspecialneeds.com
- iPads 4U: Does your family need an iPad? a4cwsn.com/ipad2-4u/
- Squidalicious: How to Get Your Kid With Autism that Wonderful iPad: www.squidalicious.com/2010/11/how-to-get-your-kid-with-autism-that.html
- Helping autistic children with iOS devices: www.tuaw.com/2010/08/18/helping-autistic-children-with-ios-devices
- iPads for Learning - 21 steps to 1:1 success: asp-uk.secure-zone.net/v2/index.jsp?id=639/684/1625&utm_source=ipadsummary
- Learning: Is there an app for that?: Cynthia Chiong & Carly Shuler: www.joanganzcooneycenter.org/Reports-27.html
- Mobile Devices and Autism: Autism News of Orange County [PDF]: www.autismnewsoc.org/docs/AutismNewsWinter11.pdf
- Moms With Apps: Teachers Discuss iDevices in the Classroom: momswithapps.com/2010/12/21/teachers-part-ii
- SETT Framework for AAC evaluations: edweb.tusd.k12.az.us/assistive_technology/AT_SETT.htm
TallyTots ($1.99) is a great counting app, and I recommend it highly. Not only is it beautifully and intuitively designed -- Leo picked it up and dove right in, I have not had to show him how to use a single module -- but it reinforces counting from 1- 20 with a variety of fun activities that themselves draw from different skills sets -- having to press down long enough on One Light Bulb so it will light up, for example. Check out Leo grooving on TallyTots:
Little Bella: I Close My Eyes (.99) is that I wrote about how much Mali loves this app just two weeks ago. Then I noticed that Leelo would sidle up to his little whenever she played with Little Bella. And then Leo started choosing it and playing with Little Bella on his own.
Little Bella (recommended by SLP Danielle Samson) is an animated book -- halfway between a video and a truly interactive book like those in the Dr. Seuss suite Leo loves so much. The app is silly, imaginative, and crisply animated, and Leo finds Little Bella's dream time adventures quite entertaining.
If your child is still working on fine motor skills, all Little Bella requires is a tap here and there -- so it's a good way to introduce iPad interactivity without too much pressure -- as you can see in the video:
We ordered Leo's iPad2 yesterday, which was a thrill. Then we found out that iPad2 ship times have increased to 4 - 5 weeks, which dulled the thrill somewhat. But it's not as though we don't already have an iPad. And this will give me time to research iPad2 cases, as we don't think a SmartCover will work for Leo -- he needs his iPad2 padded aaaallll over. Any cover ideas, besides the standard Otterbox?
Meanwhile, I am completely addicted to Ragdoll Blaster2, which horrifies me. I do NOT get sucked into video games! I have to intentionally misplace the iPad, knowing that my Swiss cheese memory will further protect me from gaming time sinks I cannot afford. You have been warned: Ragdoll Blaster is EVIL. EVIL. EVIL. (And so wonderful.) Conflicted thanks to Susan Etlinger for the recommend.
*This apps was gifted to Leo by its developer, however I only review apps that are Leo-tested, and frequently used.
So, yes, sigh, we don't have an iPad2 yet. We are planning to get one for Leo, but it may be a couple of weeks. Did I sigh already? I did.
We have checked out iPad2s, though. Leo saw plenty of them when we cruised our local Apple store on Saturday (my MacBook's battery died, plus Leo isn't terribly enthused about watching Iz play soccer, so the two of us needed an alternate game-time activity). iPad2s were everywhere at the Apple Store -- two guys giving iPad2 demos at the doorway, we passed a table full of them as we walked to the Genius Bar, and they were in ecstatic customers' hands. Everywhere, that is, except on the shelves. The store was completely sold out, and the staff say they haven't been told when their next shipment will arrive. So, if you don't have an iPad2 yet and want to get one ASAP, the store staff says the best though not ideal option for impatient types like yours truly is to order online.
Leo was a champ the entire time we were at the Genius Bar, contentedly exploring his new Dr. Seuss interactive books: Hop on Pop*, The Cat in the Hat*, The Cat in the Hat Comes Back*, and I Can Read With My Eyes Shut* ($3.99 each). I said it before, I'll say it again -- these Dr. Seuss apps are fantastic. By letting Leo "read" the book to himself at his own pace, they reinforce his classroom-based sight reading learning. I showed Supervisor M the video of Leo "reading" Dr. Seuss's ABCs, and she agrees -- interactive book apps with individual word playback are a great way to supplement Leo's reading. I would love to see individual word playback in as many apps as possible, really.
One of the Apple store employees recognized Leo from the iPad video, which was sweet though Leo doesn't seem to realize why people know who he is. I was a bit surprised as Leo was wearing a completely different outfit than he wore onscreen. When we got home, Seymour teased me that I keep dressing Leo in the African animals shirt he wore in the video, and I admitted that it was true -- but only because Leo has two of those shirts, so they tend to be available more often than their drawer-mates. (And that is the reason why he wore one in the video.)
Leo's good behavior and marvelous memory scored him a treat from the bakery next to the Apple Store -- he knew exactly what goodies we'd be in proximity to, the moment I parked our car, and he waited patiently throughout my entire store visit.
We sat down at a cafe table to enjoy Leo's treat, and he jumped into a suite of apps that I've not written about yet: Kindergarten.Com's free flashcard apps. They are good for learning and reinforcing labeling, and cover topics like Zoo Animals, Emotions, Actions, What Goes Together. Sometimes they are too specific for generalizer kids like Leo who are perfectly happy with Monkey rather than Spider Monkey, and they make assumptions about kids' knowledge (why on earth would Leo know that a golf club goes with a golf tee?), but overall -- and for free -- they are useful apps, especially for kids who are in the earlier stages of expressive and receptive language acquisition.
Apps, iPads, treats, and Apple Store -- it was a successful outing for our boy. And it does make me wonder how many of our unsuccessful outings have less to do with Leo's inability to tolerate errands and more to do with his inability to tolerate his little sister. I wish there was a quick fix for prickly sibling dynamics.
Since no such fix is currently available -- or is ethical or legal, at any rate -- we opted for the next best thing yesterday -- an outing at our very favorite beach. Look, one of Seymour's bloggers wrote a post about the beach's geology, just for us! (OK, not really, but the writer's timing was excellent.) Even on a cool gray March day, we and our new friends (I'm trying to find a man-friend for Seymour) and all of our kids had the best morning ever finding hermit crabs, anemones, chasing waves, tossing driftwood ("mermaid pens!" said Mali), and letting the pebbles run through our fingers and toes. No sibling anything, not on that beach. It's almost magic. And we had that magic all to ourselves. Can't really ask for more.
*Leo was gifted these four apps by the developer, OceanHouse Media, however I have purchased five of their other Dr. Seuss interactive book apps myself -- and Leo uses all nine of them.
TweetBusy week. Damn. See that title?
I know the iPad2 came out today. And I'm excited, we're all excited. Camera = instant icons and social stories, can you imagine? But we're going to wait a week to get one -- assuming they're still available. Neither Leelo nor I like crowds or waiting in lines, and that bests any must-have factor.
Update: iPad 2 shipping in two to three weeks (Engadget) [Pooooop!]
Seth Mnookin came to town in support of his crucial vaccine misinformation guidebook The Panic Virus (note: it was a self-organized tour). On Monday, he had a fine conversation with KQED Forum's Michael Krasny about the media's botched handling of the Wakefield debacle, and another with Steve Silberman (anti-vaccine commenters have roosted, you might want to leave a pro-evidence comment) on how autism parents' need for support and the elusiveness of autism causation answers can lead families to false beliefs and harmful actions -- including immunization choices that undermine public health.
Mr. Mnookin also came to Science Cafe, where Jennyalice, Liz Ditz, and I got to meet him in person. I was impressed -- he was not only a great speaker, but radiates kindness coupled with a Heinlein's Fair Witness-like dedication to evidence and information-gathering. That's a combination I wish more reporters would grok.
On Wednesday, Seymour's team's Fungus Fair piece went live -- and for those keeping score, that was indeed the mushroom indoctrination experience that led to our family's Mushroom Frenzy. Have a look, and please leave a comment on KQED Quest's own site to let Seymour's team know what you think.
QUEST on KQED Public Media.
Thursday (yesterday) the ASF notified me that I won an Autism Science Foundation IMFAR travel grant. A big honor. I hope to do the award justice. More info:
The Autism Science Foundation, a not for profit organization dedicated to supporting and funding autism research, today announced the recipients of its IMFAR Stakeholder Travel grants. ASF will make 11 awards of up to $1000 to be used to cover expenses related to attending the International Meeting for Autism Research in San Diego in May 2011. After the conference, grant recipients will be expected to share what they’ve learned with families in their local communities and/or online.Yesterday I also spent the entire day speaking about iPads (natch) and listening to the other speakers -- fabulous speakers -- at the UCSF Developmental Disabities conference. Speakers that included Surgeon General Regina Benjamin. Adding to the goodness: I got to spend the day with lovely Laura Shumaker, who got me the speaker gig. I learned so much that my brain shuts down each time I try to recap. But I will force my brain to give up the goods this Monday, for a TPGA post.
This year’s recipients are:
IMFAR is an annual scientific meeting, convened each spring, to promote exchange and dissemination of the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR).
- Geraldine Bliss—Parent
- Matthew Carey—Parent
- Shannon Des Roches Rosa—Parent
- Mark Fornefeld—Self Identified Individual with Autism
- Abby Hare—Graduate Student
- Erin Lopes—Parent
- Molly McGrath—Self Identified Individual with Autism/MIT Media Lab
- Brianna Miller—Special Ed Teacher, Newark Public Schools
- Sharman Ober-Reynolds—Parent/Senior Research Coordinator,SARRC
- Megan O’Boyle—Parent
- Max Rolison—Undergraduate Student
Today -- Friday -- we are all worried about and horrified by the earthquakes and tsunamis in Japan. My cousin and his family, all residents, are fine, but so many are not. Here are some helpful links, including today's coincidental TPGA post on why IEPs should be part of emergency planning:
- TPGA: Emergency Evacuation Should Be Part of the IEP
- Mail Online: The big pictures: The moment Japan's cataclysmic tsunami engulfed a nation
- Mother Jones: Tsunami makes it to our back yard…San Francisco Bay, moving toward Emeryville on the Bay’s east side
- Grist: Today’s tsunami: This is what climate change looks like
TweetSeth Mnookin's The Panic Virus: A True Story of Medicine, Science, and Fear is a high-profile book with equally high-profile positive reviews, but his impending West Coast book tour is entirely self-organized. That means Mr. Mnookin is coming here to fight and expose vaccine myths -- and help protect the health of all of our children -- on his own dime.
We, as his supporters, his teammates, his fellow skeptical humanitarians, can and should help out with the funding for this tour. Especially those of us who have long itched to take take instant and effective action against vaccine misinformation. Or those of us writers who may launch our own self-organized book tours in the near future -- we can consider our donations an investment in karma.
The amount Mr. Mnookin said (when pressed, he was hesitant to ask for support) would help is modest -- less than $800 total -- but it will make all the difference for his self-organized tour model. If you can donate even $10 or $20, and/or vigorously email, Facebook, or tweet either the URL for this post or for The Panic Virus West Coast Tour ChipIn campaign page, I think our small-scale fundraiser will succeed.
If you need a final nudge, read Mr. Mnookin's compelling interview on The Thinking Person's Guide to Autism. Then you'll see what kind of gift you'll be giving those who attend his West Coast appearances. And thank you.
Appearances (from The Panic Virus website):
- [Monday] March 7, Walnut Creek, CA 12:30pm
Grand rounds discussion, Kaiser Permanente Walnut Creek Medical Center.
- March 7, Palo Alto, CA 5:30pm
“Medical Authority and Citizen Scientists in the Vaccine Debate.” Discussion and book signing. Munzer Auditorium, Beckman Center, Stanford University, 279 Campus Ave., Stanford, CA. Sponsored by the Center for Integration of Research on Genetics and Ethics. Free and open to the public.
- [Tuesday] March 8, San Francisco, CA 4pm
Discussion and book signing, Robert W. Mahley Auditorium, Gladstone Institute of Immunology and Virology, University of California-San Francisco, 1650 Owens Street, San Francisco, CA. Free and open to the public.
- March 8, San Francisco, CA 7pm
Science Café discussion, Q/A, and book signing. The Atlas Café, 3049 20th St (at Alabama St.). Free and open to the public.
TweetGorgeous or freaky? I don't quite know what to think. My mom loves these pictures of the kids, which were shot during our winter break family reunion -- but I'm not used my kids' images being altered beyond color-correction and cropping.
For comparison, here's one of my favorite shots -- from the photos I took during same session. This is Mali with a bunch of her cousins, who obviously share some D'artagnan/goofball genetic material.
What do you think? What's your preference for photos of your kids? Touched up or not?
TweetSo Leo, Iz, and I were in Apple's iPad: Year One video, which a very thin Steve Jobs introduced at the Apple iPad2 launch event in San Francisco. (I winced when the word "Thinner" appeared above Jobs's head in reference to the iPad2, did you? Even though he sounded hale and appeared to be enjoying himself thoroughly.) I was as thrilled as any other Leo-fan watcher to see our boy appear onscreen, as we were never told (though Seymour had his suspicions) what the iPad shoot we'd done in early February was for.
Check out the video if you've not seen it yet: Iz appears for just a flash at 1:20, playing her piano, Leo starts bouncing on his trampoline at 4:40, then I start talking about what autism means for Leo, and how his iPad has given him a large dose of the independence he so deserves. I've been told that the autism section of the video is rather affecting, so have a hanky or dry shirt sleeve at the ready:
I wrote about the top-secretness that was the photo shoot at BlogHer. Details I didn't mention include:
Jennyalice spent her birthday onsite at the shoot, being Leo's best friend. She sat with him and played with him for the entire morning, while I had my makeup done, helped the crew with logistics, and talked to the camera. Jen's role got really interesting once we realized the crew had, in transforming my kitchen into a set, accidentally locked down all Leo's food. Jen somehow kept an unsettled Leo happy and engaged through what is usually his lunch hour, then turned around and picked up both the girls from their respective schools and got them back to the house in time for their own shooting sessions. Again, on her birthday. *Mwah* to you, Lady.
I was so tired and the shoot happened so fast that I didn't have the time or energy to get the house tidied like I wanted -- and certainly never worried about the garage, which has suffered dramatically from six months of Leo's bus being on time every morning, thereby eliminating my traditional garage-tidying window. So guess where some of the film crew set up shop? In our crapheap of a garage. YEAH! One benefit of being very very tired all the recent while is that, after a time, you just go with whatever needs to be done. But I still can't believe that people from whom I was in no position to demand a blood oath of silence spent time in that awful awful overstuffed space.
Also, I was sporting my infamous $5 haircut, which is exactly the cocker spaniel bob I specifically asked the stylist not to deliver. Alas. And I'm not really dwelling, because the way my house and I looked wasn't even remotely the point.
A few folks had an issue with a "cure" phrase that was used in the autism section preceding Leo's, by Boston's Dr. Howard Shane, who said,
"Assisting children with autism to communicate is a rather complicated process. The iPad is absolutely part of our clinical practice here ... We're not curing autism but we're offering a tool that improves the potential of a person with autism: gives them more opportunities to be better communicators, to be better understanders, to be better learners. The iPad is clearly the next step, it's a game changer."I am leery of pairing the terms autism and cure. As I wrote in the forum that Jen Myers so thoughtfully posted on The Thinking Person's Guide to Autism Facebook page:
My family and I were featured in the iPad2 video, and I spoke with the crew at length about respectful language. I haven't seen the video itself yet, but my husband ... says that it was Mr. Jobs who made the cure-theme comment; ... says it was meant in a "we're surprised by how this is helping" fashion. However, it is my personal opinion that, as long as the term "autism" refers to the entire spectrum, and includes people who adamantly reject the term "cure," it is disrespectful to pair those terms.The discussion is lively; I recommend you give the thread a read, and add your own comment.
I really believe the video rams home the message parents like me have been trying to tell to the public (and hopefully insurance companies and school districts) for almost a year -- the iPad brings revolutionary learning opportunities to kids like Leo. That autism and iPad message will now -- I hope -- enter the public consciousness. And perhaps more iPad placements will result.
TweetHappy Birthday Dr. Seuss! Though we're celebrating in a rather Pippi Longstocking birthday fashion, because the gift is really from everyone's favorite quirky former La Jolla resident author to my Leo: Dr. Seuss's ABC app is the very best app I've yet found for reinforcing Leo's sight reading skills. If you think I'm exaggerating, watch this video as Leo reads the interactive book to himself by tapping on each word (or picture representing a word) in sequence:
Dr. Seuss's ABC is one of Leo's three perennial favorite Dr. Seuss books. You can imagine his delight in discovering this app on his iPad, and I can verify that he has played with it almost non-stop ever since.
I'd like to thank Dr. Seuss of course, for inspiring Leo to love his ABCs, but in this case the props need to go to Oceanhouse Media, for creating a truly interactive book that encourages my son to learn by helping to burn those sight words into his brain via multiple visual contexts.
Now, if only Oceanhouse Media would make an app for Mr. Brown Can Moo, Leo would be the happiest iPad- and Dr. Seuss-loving boy who ever giggled his way through a book!
Many of the Dr. Seuss apps (complete listing on Oceanhouse Media's site) are on sale this week in honor of Dr. Seuss's birthday, so have a field day. Get your Dr. Seuss lovers what they need, and feel no guilt about supporting their education. Blame me if you get in trouble, I'm used to it.
How are you celebrating Dr. Seuss's birthday? (Um, I'll be glued to the screen watching the iPad2 event liveblogging from engadget at 10 AM PST.)
TweetLast week was hard -- for Leo, for me, for the kids. No school for Leo (winter break), plus his beloved Therapist V was out introducing his offspring to snow. I'll list the mood-deflating stressors at the bottom of this post, only because it's disingenuous to dismiss them. But I will tell you what cured both Leo's and my blackened blues: A California snow-to-sea day!
Yes, we had snow in the Bay Area. This is at the top of Skyline road and Tunitas Creek, for local location spotters. We were the only folks there, which I found astounding.
It wasn't much of a snow (I used to live in Syracuse), but Leo and Mali had never seen the stuff first-hand, plus it was enough to throw snowballs at each other and coat hands with cold fluffy powder.
Playing in the snow was enough of a thrill, but we then realized it was only thirty minutes from there to the Fitzgerald Marine Reserve in Moss Beach, which was at low tide and just waiting for us to come tidepooling.
Mali was especially excited -- we told her that tidepooling would let us see lots of sea creatures not usually exposed, so she shrieked "Mermaids!" and bounced away to find them.
We didn't find the mermaids, but we did find a beach where Leo was happy to clamber around on the rocks, pick his way through the tide pools, and run on the beach. Seymour found huge whole abalone shells, an abalone kitteh, starfish, a huge piece of bullwhip kelp that generated many Raiders jokes, and we all scrambled along and joined in the fun. Until we started realizing that it was damn cold (Leo and Iz were first, Mali never clued in as she has no internal thermostat) and set off for home.
Except you know what's on the way home? The Princeton docks where the fishing boats sell their wares. Three enormous Dungeness crabs ended up riding home with us.
I didn't realize the crabs would need to hang out in our sink until we cooked them. So I almost peed my pants when I reached over the sink to get a glass of water and a big crab reared up at me. GAAAH!
Mali felt for the crabs, mostly. She didn't want to eat them, and she tried her best to help them understand their fate by writing a warning in Crab Talk, describing the "brain-cutters" that were coming for them:
Crab-rearing and Crab Talk video demonstration video. Note that once the crabs were cooked, Mali had no problem smashing them open. But she still wouldn't eat them.
That would be two pounds of enormous fresh chanterelles. Enough to feed our entire family and six hungry Canadians for dinner the next day.
I love Northern California. Sometimes just living here is all the cure I need.
Now, as for the black week leading up to the curative weekend -- I had just come from a wonderful weekend with three of my favorite people and my wonderful mom. So what the hell is wrong with me?
I have to tell you, I'm not sure. I had The Best Time Ever during our writers' retreat -- but it was not restful. Quite the opposite. I came home trashed from all the face time, even though I wouldn't have changed anything, not one thing, about our weekend.
And I came home to the instant stress of trying to work with all three kids out of school plus Leo disoriented from routine disruption, topped off by five forecasted days of rain, which blew out any chance my preferred mood booster: getting outside, as described above. (The one time I did haul the kids out into the redwoods, Leo refused to hike for more than 50 yards. I'm still not sure why.) Seymour was very supportive, even took time off work to sit on the monkeys while I gave iPad presentations via iChat to educators in Tennessee.
But mostly, I can't stand it when Leo is sad, and there's little we can do. He spent the week on a crying jag, sometimes even crying himself to sleep. We think it may have been a bit of a stim, but it was rooted in real distress -- and he can't tell us how he feels, or why he was crying. We could only try to comfort him, which sometimes he liked and sometimes he really didn't.
Leo's difficult mood meant curbside pickups only for Mali after school, as I didn't want to bring her brother's unpredictability onto her crowded playground. It's hard enough for both of them when he's grumpy -- he tends to fixate on her as the source of his discontent whether true or not, and we have to keep them separated.
So, it was a hard week. By the time I took Leo to his ophthalmologist for his annual full workup (I tend to schedule all his recurring medical appointments during breaks, which in hindsight probably doesn't help much with his stress level), I was nearing the breaking point. Leo was too unsettled to stay in the waiting room while we waited for his eyes to dilate, so we asked the front desk to give us a call when Leo's turn came, and waited in our car. I helped Leo play with new apps like Swapsies, he played with perennial favorites Silly Numbers and FirstWordsDeluxe on his own, and I spent the entire time trying to imagine my sadness as a wave being sucked back down off the beach and away.
That worked until we came back into the office and the doctor casually asked how I was doing. Then I lost it. Which made me mad because for all I knew, my crying was reinforcing negative stereotypes about autism parents. I just wanted to share Leo's information with her, and tell her that, actually, he was doing really really well, and ask her some questions. But all I could do was sob. She was very kind and hugged me and took care of us well. I adore her. (If you're a Peninsula resident and don't already know who the best pediatric ophthalmologist in the area is, I'd be happy to tell you.)
Also mood-spoiling: I caused a misunderstanding at work, with one of my favorite people in the whole world. Which probably put her in a shitty position, even though she'd never tell me. Which just sucks. Even though she says it's worked out.
And people we love keep getting divorced. Which Leo can't understand; one of his favorite verbal stims is to list pairs of his favorite local people circa 2005. Only problem is all of them, with the exception of one couple, have split. So I listen as he lists each emotional trainwreck in sequence, and I praise him for his great memory. Then I cry again.
The absurd thing about being so low last week is that there was so much to celebrate and enjoy.
- Miss Mali was the subject of my guest post for PBS Parents: Science Kids on the Loose: Helping One Little Girl Love Engineering
- Leo and his iPad arrived in Barcelona (on the Internet, anyhow)
- Leo had to get two shots during his annual checkup: Meningococcal and TDaP. He was a total champ; we didn't even need the second nurse that his doctor had thoughtfully enlisted.
- I applied for an ASF Grant to go to IMFAR, the 2011 International Meeting for Autism Research. Oh, I so want to go! Don't you?
- I got to witness The Internet at Its Finest as folks came together and made an iPad happen for Pierre, a little boy who desperately needed one but whose family needed to focus on his essential medical bills. Wrote about it for BlogHer.
I'm processing, mostly, and am just so glad to have forests and the coast to cure what ails me.