Squidalicious

Making Leo Digital Versions of His Favorite Books -- on the iPad, of Course

2013-06-10T09:59:00.003-07:00

I put Leo on the bus this morning, and Seymour and I drove Mali to school. Iz and I leave for Ghana in less than an hour. I think Mali will be fine -- she'll have Daddy, she'll have Grandma -- but I am worried about Leo, because we're tight, we two. So I've done as much as I can to guarantee I'll "be" there for him even while I'm away.

How? I've used the iPad app Kid in Story to make Leo digital versions of his favorite books, with my voiceover. That way I can "read" him his favorite books even if I'm not present. (I also used Kid in Story to make a "Mommy & Izzy Went to Ghana" social story -- that's a given.)

Making the books was easy-peasy, because with Kid in Story you can take and insert photos from within each photo page (though you could also use stored iPad Photos, if you like). Even a thirty-page book only took about 20 minutes to make.

Even better, I could then upload the customized books to the cloud storage service DropBox, and keep copies of them there -- so I have backups if Leo decides to delete the resident versions (deleting and/or duplicating media is a favorite iPad pastime of his). And with the free Kid in Story Reader, I can even import and Leo can read the stories on my iPhone, even though the primary app is iPad-only.

Of course, one should respect
copyrighted material. Ahem.

These custom digital favorite books make Leo so happy. He uses them to keep himself calm when we're at medical appointments (there have been a lot of those lately). He can page through them at whatever pace he likes. And there's no danger of him loving the digital books to pieces, which he has done on occasion with their board-and-paper versions.

The ability to make Leo these custom digital favorite books is as thrilling to me as when Oceanhouse Media came out with the ability for users to add their own voiceovers to their Dr. Seuss OmBook iPad apps -- I believe that ability to control repeated readings contributed to Leo's performance yesterday, in which he read/recited the paper version of Dr. Seuss's I Can Read With My Eyes Shut to me in its entirety (!!). It is so great to have so many options to support his reading.

While I hope there will be sufficient wifi for me to FaceTime with Leo (and Mali, and Seymour, and my Mom) while Iz & I are in Africa, there's no guarantee of that. But I can guarantee that Leo will hear my voice while I'm away. I really hope that will help make it less hard for him that I'm away.

Ghana-bound

2013-06-09T11:15:00.003-07:00

Iz and I are going to Ghana tomorrow. We'll be there for two weeks. And it almost didn't happen, which is why I've not talked about it much.

This isn't the first time I've been; I used to live in Ghana thanks to the excellent University of California Education Abroad program, and I also dragged Seymour there after we'd been dating about a year, to put our compatibility to the international travel test. (It worked.)

I figured I'd write about the trip as soon as our Visas arrived (Ghana requires US travelers to send our passports to the Ghanaian Embassy in Washington DC, and have the visas affixed therein). And because I tend to over-prepare with travel logistics, I sent our passports in five weeks ahead of our departure rather than the required minimum of two weeks.

About three weeks before our departure date, the passports hadn't come back, and I started getting nervous. As in not-sleeping nervous. Even though the Embassy of Ghana website says that one month is a reasonable window. Then, two weeks before our ETD, I got a phone call from the Embassy, saying that I'd sent in the wrong type of return envelopes and needed to send a new one (to their credit, they have since updated their website with return envelope specifics).

My dear sister-in-law, who lives in the DC area, waited in line 90 minutes to deliver the new envelope personally. And five days later, we received it. Containing only Iz's visa and passport, not mine. One week before our scheduled departure.

I was incapacitated with hysterics for 30 minutes. Once I regained the ability to speak and make decisions, I immediately overnighted a new return envelope to the Embassy. I also left several voice mails, asking what the hiccup might have been. I never heard back, so all I could do was carry on as though we were going, buying gifts for Ghanaian friends, arranging care and specifics during my absence (my mom is coming to hang out with Seymour and the two little kids, Seymour is hosting a hackathon and needs extra babysitting, etc.). And -- for the first time in my life -- using pharmaceuticals to sleep, otherwise it didn't happen.

The only information I had was my twin USPS Express Mail confirmation numbers -- for the outgoing envelope, and the return envelope. So I was able to confirm the Embassy's receipt of the envelopes. But from Tuesday through Friday -- before a Monday departure -- I could only compulsively check USPS.com's tracking service for the return envelope.

I thought the envelope might get sent out Thursday, since the Embassy's consulate, which handles the visas, is closed on Fridays. But there was no tracking information on Thursday night. And there was no information Friday morning, mid-day, or afternoon. I kept checking anyhow, even as I confirmed that -- should I need to spend the hundreds of dollars necessary to change our flight, should that even be possible as there just aren't that many flights to Accra -- I'd need to do so by 8 AM Monday morning. Before the post office opens. Which means that unless my passport arrived Saturday (yesterday), I'd need to change my flight.

And then ... magically, at 6 PM on Friday night, the tracking service said that the envelope had been processed through their DC facility. I stopped hyperventilating just a bit, unwilling to calm down entirely until the passport was back in my hand. I figured the relief of knowing everything would probably be OK would be enough to let me sleep, but -- nope, I was up at 3 AM on Saturday morning. Compulsively checking the tracker as the package arrived at our regional hub, and then our local hub just before 9 AM.

The tracker did not provide any further information after early morning, so all I could do was watch the mailbox (not easy to do, if you've been to my house). It hadn't arrived by 1, when Mali's classmates came over for a pool party. Fortunately they were happy to play in the house first. And then I noticed that someone had parked too close to our mailbox, a scenario that usually results in our local carrier bypassing the box and taking the mail with him, and leaving a grumpy note with the mail the next delivery day. But just as I was freaking out anew, I saw the mail van go by -- and ran out into the street to wait for him to drive back (we're on a long cul-de-sac). Five minutes later, at 2 PM, he came up the hill -- and handed me the envelope, which did indeed contain my passport and visa. Delivered at literally the very last possible moment.

So, we're going. Yay! I think this will be a good trip. We're going for many reasons -- Iz just finished her freshman year of high school and so is only ours for two more summers after this, she still likes me most of the time, kids who have the opportunity to do so should see more of the world, I want some damn fufu, and I am a few beats beyond burned out. I need to be away for a bit. Seymour understands, I am grateful for that. I hope I come back refreshed. And I hope that the visa saga is the only seriously stressful part of our trip.

Beads and Balls

2013-05-31T06:19:00.000-07:00

Image Source: Wikimedia Commons

Leo loves beads. Loves them. Especially if they are on strings, and he can rub them in his hands and make them click and clack.

So imagine his delight upon walking into a specialist's office and finding a lovely looped string of beads waiting beside the examination table! He was in heaven. And the doctor was nice, she didn't make him stop playing with them during the exam unless she needed his specific attention -- until the end of the exam, when she said she actually needed the beads, because they were in fact a medical tool. One I'd never heard of: an orchidometer. It's used to estimate testicle size, to determine developmental stage among other matters. In Leo's case, to evaluate whether or not he's officially in puberty

Leo has been seeing a lot of specialists right now. Some due to the seizures & anaphylactic reaction a few months back, others because he had a big reaction to some bug bites at the beginning of last month and we're still trying to figure that out too.

But mostly, he's seeing specialists because we're lucky -- Leo's pediatrician is an awesome doctor who wants to ensure that -- since Leo can't always tell us what's up and how he's feeling -- everything of his is working and developing the way it should. This is especially important as puberty looms, what with our boy being twelve and all.

And as it turns out, the specialists have found a few things that need attention, such as monitoring the amount of sugar in his diet. So all these medical office visits have been a good thing. And have led to the discovery of new playthings.

I wonder where we can get an orchidometer for Leo's personal use? Those were some excellent beads.

Found Leo Selfies

2013-05-25T07:13:00.000-07:00

Leo takes hundreds of selfies on his iPad. This is definitely my favorite of his sequences so far.

In Which Mali Knows What a Pilum Is

2013-05-23T22:05:00.001-07:00

Today Mali made a major word score on the SpellTower app with 'pilum,' which is a Roman javelin. "I know about this because I read so much mythology, Mommy." (So did I. Also a lot of Roman-centric Asterix the Gaul comics. But I still didn't know the word.)

While we were waiting for Leo's bus to arrive, we did an SAT vocabulary quiz on my new iPhone. She got 15 out of 20 correct on her own, through knowledge or deduction.

Also while waiting for Leo, we had the following exchange:

Mali: "I want something cold with lactose in it."
Me: "Lactose is the sugar in milk, is that what you meant?"
Mali, a tad impatiently, "Yes, I want something milky *and* sweet. Like ice cream. Please."

Did I mention that she's eight? And that ... she did not test into the local GATE program? Multiple intelligences, folks; multiple intelligences. One more reason I'm glad she's in a language immersion program instead of one of the more test-centric schools.

"Take off your cape and just be a friend."

2013-05-13T22:54:00.000-07:00

Please read Don't Be a Hero. It's an important essay on why folks who work or volunteer with people with disabilities need to rethink that pervasive Hero mindset. Excerpt:

"Imagine learning that someone befriended you with intentions of putting it on their résumé as volunteer experience or merely to pat themselves on the back. What if your friend accepted your social invitations “out of the goodness of their heart?” How would it feel to know that what your “friend” gained from your relationship is the righteous feeling that they were doing you a favor? Would you feel like you were experiencing an authentic interpersonal relationship? I’d imagine not. I’d imagine you’d feel used, cheap and deceived."

I'd rather see folks with Iz's attitude. She went to a sibling camp with Leo a few years ago, and keeps asking when the next one is going to be. I told her she was getting old enough that she might be able to work at the camp soon.

She was excited, and said, "That would be great!"

"Yeah," I said, "The pay is pretty good, too."

Her response: "I'd get paid?"

More of that. Yes please.

An Intense Ten Days

2013-04-15T07:50:00.002-07:00

It's been a while since I did a laundry-listing post. But the last ten days have been so overwhelming, in terms of emotional intensity (I cried a lot, OK?) and events, that I'm just going to have to do that in order for this site to be a functional journal. Which it's supposed to be. And isn't, not lately. I'm also not meaning to be a whiny git, because I've had my full share of whiny parent gits lately and I'd rather not be in their company. But I do want to get all this down, even in raw form. So I can look back and learn, and try to do better.

Last weekend was the big fundraiser for Leo's school. It was a huge deal, Seymour's parents came down and stayed with us, Sullivan and Emily and partners came (and met for the first time IRL, which was nifty). However I am a dolt and had the times wrong, so we were an hour late and missed the auction and most of the non-stuck-at-a-table socializing. Which I wasn't interested in [read: am terrified of] doing on a large scale but had hoped to do with the rare combination of people present. So, bummer that. But the school met its goal, Jen was a gracious host and did lots of impressive impromptu Presenting, and we also got a fabulous new director, best possible choice to replace the wonderful current director. My hope is that the wonderfulness continues and that the school continues to be the place Leo needs it to be once he's of age for the Adult program.

My laptop shattered the following day. I'm sure it was a kid, knocking it off a surface. I have no evidence or leads, however, so I didn't even bother asking, as we have AppleCare and the ability to get it fixed. Our house runs at a constant emotional fever pitch, I didn't see the point in whipping things up even further. But I spent the entirety of last week gritting my teeth, using the mothballed laptop we've planned to turn into Mali's dedicated Minecraft server because she won't notice it's no good for anything else, and which is so slow that I had to cut-and-paste all browser-based writing or correspondence from TextEdit because of the ten-second lag between typing and letters appearing. I don't know about you, but I'm a browser jockey, with several windows and apps going at once. So that was counter-productive and frustrating but temporary and I'm typing on my Precious again as of last night (clasps laptop to chest).

Leo had a rough ten days, is still having a rough time. I don't know why. He's getting bigger, maturing, possibly coming up on puberty, probably getting frustrated with the gap between his needs and comprehension, and his ability to express those things combined with our not-always-perfect ability to interpret and act on them. His frustration has been manifesting in ways I'm glad tend to be directed at me as his primary communications stop gap, and not at his sisters, not unless they are assaulting his hearing or triggering his sensitive emotions. But it's manifesting in ways we need to be very careful to help him redirect and learn to control for his own social and participation-in-society well being. And in ways I honestly hate for Seymour's parents to see, because those behaviors make it difficult for them to focus on Leo himself and how well he's doing in so many other ways, like his communication. (Though they were constantly reaching out to him during their stay, which was sweet. Not everyone tries with Leo.)

The irony there being that Leo's doing much better in his new home program. I've not written about this much yet, I think. He started a new home program in February thanks to the new California autism insurance mandate. The problem was, February is just when everything was at its hardest for him. Winter is usually a behavioral rough time, plus he's not been himself since seizure in December. So having a team of new people placing demands on him during the afternoon witching hours has been ... a challenge. (And, honestly, a source of near-heart-stopping stress, as are any circumstances in which Leo is displeased and dysregulated.) Even though he's working with lovely people. And now Leo and those lovely people are starting to get each other's rhythms, starting to have synchrony, starting to get stuff done. So, whew that.

But we still don't really have an explanation for Leo's seizure and anaphylactic shock. I got the last of the reports -- from his allergist -- while I was sitting in the Apple Store parking lot on Tuesday morning, fretting over Leo's dysregulated behaviors and reviewing IEP documents through the shattered laptop screen (his IEP was the next day). It took a long time to get those final reports back as Leo turned out to not be a huge fan of the allergy skin prick tests, so he needed to get blood work done instead. And while Leo has learned to tolerate shots and blood draws fairly well, it took three separate attempts at tourniquets and sticks this last time (Friday AM ten days ago). He was not pleased, neither was I, but it wasn't anyone's fault -- his veins have become elusive. Anyhow, more stress. All round. Poor dude. He was so patient.

The allergist's final call was to let us know that Leo has ... no allergies. To any of the environmental agents or foods for which he was tested. (He does still react to Amoxicillin.) The neurologist had no answers either. No answers. Ironically, the medication Leo takes lowers his seizure threshold, but he was off that medication from October to February, and his seizure and anaphylactic shock episode and hospitalization and almost-dying happened on December 27th. So we just need to keep the Epi-Pens around, and make sure we're up on on seizure safety. And keep living our lives, was the recommendation from both fronts. I'm trying to, but have not been able to sleep through the night since December (ironically, Leo's sleep has gotten much more consistent).

The IEP went well, from a logistical perspective. I had several pre-IEP meetings with various team members -- one of which Leo participated in as well -- so the official IEP meeting itself was well-oiled and hiccup-free, and all services are remaining not just intact but consistent. And his SLP is very serious about probing the UNITY AAC system with him, for scaffolding his speech because Leo has so much to say but expressing it is not easy for him. But it was difficult, really difficult to hear and have it go on his official record that Leo had been on track for independence and goal-meeting all year until his seizure, at which point he regressed and everything had to be recalibrated for sensory accommodation and regulation. I know he'll get back on track. But it just doesn't seem fair to him, when learning and being in school was already taking everything he had.

It was also instructive to learn from his IEP team that that the kind of language we use at home when Leo's behaviors are not just disruptive but potentially dangerous -- a big, loud, firm "NO," to let him know we're serious and emphasize that the dangerous behavior is in a different category than other behaviors -- cannot be used in a classroom full of echolalic students. Nope, not a great idea. They have other strategies, though, all of which are in keeping with our philosophy of respect and understanding behaviors. Feeling lucky about that.

Leo's sisters are having a lot of needs right now, as well. Seymour and I are giving some serious thought to how best to meet those needs, make sure the girls know we're here for them every bit as much as we are for Leo. I may be rethinking my other obligations. I'm needed here. High school is hard. Being a teenager is hard. Third grade is also hard. Being a third child, that is also hard.

Being parents, that is also hard. Which is why I'm glad Seymour and I took off this past weekend for an overnight in San Francisco. (Leo was at camp, the girls stayed with marvelous friends whose kids we will happily mind, on some future date.) We probably talked about the kids instead of each other too much, but hello, we're parents.

The weekend was glorious and so cherished otherwise (photo is the view from our hotel room, which was a gift from my brother). And though I didn't sleep well even without the kids around because my subconscious wouldn't stop worrying about Leo being at camp for the first time after his seizure, few experiences can compare with a weekend in best-city-ever San Francisco with my soul mate. Dim sum breakfast and walks along the playfully lit-up Bay Bridge are very soothing. And soothing is good, for all of us.

"Is Your Son Really That Difficult?"

2013-04-12T10:04:00.001-07:00

Photo © Merrick Brown
at Flickr

That's what the well-meaning blinds salesperson who just left my house asked me, after I told her I was leery of installing vertical blinds in our family room -- mostly because I was worried Leo would love them to pieces, quite literally.

I launched into kind-but-firm on-the-spot advocacy and acceptance mode. I didn't cry (something I might have done in the past) or get strident (something I am still working on). Instead, I smiled to show how much I love my son, and let her know that she was misunderstanding my concerns.

I told her that I wouldn't call my son difficult, but that his autism means he sometimes has difficulty reining in his impulses. So even if we asked him to please not wrap himself up in or set in motion a great big set of swinging, clanking, flapping blinds, he might not be able to resist. He would likely see them, as he does in most doctors' offices, as more fun than any plaything on this planet. And he might pull them all down, in his enthusiasm.

It's not that Leo is difficult -- it's that I know what can be difficult for him. Why would I put him in a difficult situation, when it can be avoided?

But as we also like to give him opportunities to prove himself, we will probably get one tiny trial section of vertical blinds for now. His ever-increasing maturity may mean that blinds-play has become passé. (Also, we have to do something, as all our floors and bookshelves and furniture are getting bleached to hell.)

The salesperson seemed to get it. She nodded, and said that what I told her made sense because "we all make allowances for each other, especially as parents." Indeed.

I wish more people were so easy to reach.

Using His Words

2013-04-08T00:15:00.002-07:00

Seymour's folks were here for the weekend, to attend the big fundraiser for Leo's school, and to watch Iz play soccer. The kids all loved having their grandparents on site, Leo especially -- he greeted them with squeals and giggles, and answered most of their questions (which he is not motivated to do with everyone, trust me). And after they left, he used more language and had the longest conversation he has ever had with us, by far. We need to convince the grandparents to come more often! Here's our exchange:

Leo: "Want to get in the car!"

Us: "Why do you want to get in the car?"

Leo: "Want to go to the airport."

Us: "Why do you want to go to the airport, Leo?"

Leo: "Want to get on an airplane, go to Grammie & Vavo's house."

Us: "Which house do you want to go to? The house with the boat or the house with the pool?"

Leo: "The house with the boat!"

I talked him into going to get some horchata instead, but that's some damn fine language. The kind of language I'm working with his teacher and SLP to try to help him develop, and scaffold, through visual supports and typing.

The kind of language that we'll definitely be celebrating on Wednesday, when we meet for his annual IEP and reformulate and perfect his goals as a well-oiled parent/teacher/SLP/OT team. Cross your fingers that the school district does not have any surprises for Leo, or for us.

Autism Acceptance Day 2013: "What are you doing to make the world more accepting of autistics?"

2013-04-02T18:45:00.000-07:00

Leo grooving on the sandstone at La Jolla Cove

That's what autistic advocate Kassiane Sibley asked today.

So, for those who missed yesterday's Al Jazeera English The Stream Autism Spectrum segment: Ari Ne'eman, Steve Silberman, and I were part of a group discussion on autism rights, acceptance, inclusion, and education. Video below:

...and if you want to continue exploring the themes of the Al Jazeera segment -- rights, acceptance, you can watch and listen to my Autism Parenting and Gratitude Webinar for The Reading Clinic. I also talked about finding role models in the autistic and parent communities, and about parents being kind to themselves so they can be the parent their kid needs. And, oh, a lot more -- the webinar is just a bit more than an hour long.

Also today on BlogHer, I wrote Do the Right Thing: April 2 Is Autism Acceptance Month. Excerpt:

You don't want to be on the wrong side of history, do you? That's a question we're hearing a lot just now. And I think it's a particularly important question to ask yourself today, during Autism Acceptance Day, and throughout April, which is Autism Acceptance Month. It's important for you to accept and then help other people understand that autistic people like my son are your fellow human beings, with your same inalienable rights to live happy and pity-free lives. That whatever their needs and abilities, autistic people are not "less" than other people.

The Autistic Self-Advocacy Network just launched its e-book And Straight on Till Morning: Essays on Autism Acceptance [Kindle Edition]. It contains the work of many wonderful Autistics and allies, including Kassiane Sibley, Zoe Gross, Shain Neumeier, and Lydia Brown, and was edited by Julia Bascom. It also includes my essay "All Done Autism Acceptance." From Steve Silberman's review:

"Rethinking social conventions in light of autism is precisely the goal of another just-published ebook called And Straight On Till Morning: Essays on Autism Acceptance.The third title published by a non-profit group called the Autistic Self-Advocacy Network, it is an anthology of essays about autism written from the inside. Each of the contributors to the book is on the spectrum themselves, the parent of an autistic child, or an ally in the disability rights movement."

I also contributed to autism & apps posts for Parenting.com and Tech in Special Ed, but I talked about those already, on today's previous post.

Since Autism Acceptance Day is just the lead-in to Autism Acceptance Month, here are some AAM projects for you to keep on top of during April 2013.

At Thinking Person's Guide to Autism
The Autistic Self-Advocacy Network's Autism Acceptance Month project
Paula Durbin-Westby's Autism Acceptance Month initiative

To quote Victor/Victoria, that is what I have done about it. What are you going to do about it? Let me know, so we can promote your Autism Acceptance Efforts on Thinking Person's Guide to Autism!

What You Need to Know About Apps for Autistic Kids

2013-04-02T10:44:00.000-07:00

It's World Autism Acceptance Day! Which I'm going to take on in two parts.

First, let's talk about apps for autistic kids, because Parenting.com just asked me for my recommendations for apps for kids like Leo in general*, Tech In Special Ed just published a guest post by me on apps for older kids, and iAutism has put together a list of nearly 200 Free or discounted apps for World Autism Awareness Day (2013).

Here are my current thoughts on apps that work for Leo and his sisters, on "go-to" apps for autistic kids, and some qualifications on what makes a good app for autistic kids in general.

On our household's favorite apps

My kids really like the new app Kid in Story ($6.99) -- it's a story making app that lets you take pictures of your kids and "greenscreen" them right into a storybook with custom voiceover and whatever backgrounds you choose -- your own photos, included story templates, etc. We've used Kid in Story to help my twelve-year-old autistic son Leo get ready for trips and transitions, and to create memory books of favorite activities like trips to Disneyland. His eight-year-old little sister Mali tends to use Kid in Story to put herself in imaginary Minecraft or Lord of the Rings adventures. Kid in Story also has a free Reader companion app, so we can share the stories with grandparents, cousins, and Leo's therapy team and teacher.

We also love Netflix (Free). The app includes a Just for Kids section, and Leo loves browsing it -- he discovers shows like the new CG animated Thomas the Train series and uncovers old favorites like Dragon Tales. And because the Netflix app includes the graphic logos for each show, my son (who still struggles with reading) can use it independently -- he can watch what he wants to watch when he wants to watch it, and doesn't have to wait for us to queue up the shows he wants on DVD or TiVo.

Most apps by TocaBoca, Duck Duck Moose, Spinlight Studios, and Oceanhouse Media are consistently hits with my kids, because they are not just fun but beautifully and intuitively designed -- my kids can jump right into all their apps and start playing (from their perspective) and learning (from mine).

On apps that appeal to Leo

Anything with an intuitive visual interface, especially those that don't require reading since Leo's not reading fluently yet. He currently loves the sewer alligator game Where's My Water (free), the musical free play app TocaBand ($2.99), and all of Oceanhouse Media's interactive Dr. Seuss books because they include touch-each-word voiceover and so let him "read" his favorite books independently. And lately, he's been going back to the paper Seuss books and "reading" them out loud thanks to his constant iPad practicing!

On "go-to" apps for autistic kids

There are no "go-to" apps for autistic kids, not really, because the abilities of autistic kids vary so widely -- some are hyperlexic and teach themselves to read at age two, others still struggle with reading as they enter their teens. Some autistic kids are very visually oriented, like my son Leo, others just want deep information on their areas of special interest.

It really depends on what your child wants and needs. That's why my SLP and Autistic collaborators put together our app spreadsheet (http://www.squidalicious.com/2011/01/ipad-apps-for-autism-spreadsheet-of.html), to help guide autistic kids, their parents, autism professionals, and adult Autistics to a selection of apps that we think are valuable and worth their time. And we appreciate feedback!

On what makes an app not just good but great for kids like Leo

Good design, then good content. Good design is what lets Leo use apps independently or with minimal support, and then access the content. So many app developers have good intentions and sometimes even great ideas, but don't understand graphic or interface design. And I'm not saying my son doesn't still play with and enjoy some of those apps. But bad design makes it impossible for Leo to use some of the apps that could benefit him most.

Again, this is why we screen and select apps for our recommended autism apps spreadsheet.

I recommend looking at the iTunes reviews as well. iTunes no longer lets people who have received developer promo codes leave reviews, so you don't have to worry so much about skewed positive ratings.

----

*One blip -- the Parenting.com article has me recommending an app called Look in My Eyes, based on a 2010 article of mine called Leo's iPad Apps for Kids With Autism Starter Kit. I no longer recommend Look in my Eyes -- and it has been taken off our spreadsheet for recommended apps -- because autistic people often find eye contact painful, and unnecessary, and often say "I can look at you, or I can talk to you, but not both." I have since updated the post with the de-recommendation.

1 in 50 Kids Have Autism: This Rate Does Not Mean What You Think It Means

2013-03-31T09:18:00.000-07:00

By now I'm sure you've heard the new "1 in 50" CDC prevalence numbers for autism [link to Emily Willingham's excellent Forbes.com article]. What these numbers demonstrate is that under-diagnosis is the issue, rather than a significant increase in autism rates. And for those of you Silicon Valley locals who are thinking, "well, I didn't see these kids in my class when I was growing up," read on.

Anecdotes and personal experience are a good starting point for thinking about an issue, but when we're talking about a population it's important to look to the numbers over time, along with diagnostic criteria changes. Thirty years ago in the US, there was no such thing as an Asperger's diagnosis -- that wasn't part of the DSM until 1994.

We also need to consider that Silicon Valley is a different place than where many of us grew up. There are just more autistic kids here. And that's not surprising, given the increasing evidence that autism can have a significant genetic factor, and given how still-uncommon it is for any adult with Asperger's over 30 (i.e., many of our local engineers and scientists and innovators) to be diagnosed.

Most of the kids making up the new numbers can "pass" and so have been overlooked. Not all. Most. These kids may not need as much support as their more intensely autistic counterparts, but they do deserve accommodation so they can succeed both academically and emotionally.

The problem is that these kids have historically been more difficult to identify, and this slipperiness is part of the basis for the new DSM-5 diagnosis changes. "Passing" is especially true for autistic/Asperger's girls, who tend (though not always, mind you) to be rule followers and are often considered "good kids" by adults even as they struggle socially with their peers.

I'd recommend reading IACC member Matt Carey's post on the new numbers. He breaks down many of the factors that concern us all. Specifically:

"We (a society of autistic and non-autistic people) need to give autistics the tools and supports needed to succeed in this world, with various definitions of success. And we can’t do that if we don’t understand what is needed. 2% is a number that can grab people’s attention."

From: http://leftbrainrightbrain.co.uk/2013/03/25/autism-rate-2-what-now/

Warm regards. I'm off to hunt Easter Eggs with my kids. Leo's going to love it.

-Shannon

Voices for Vaccines: A Welcome Reality Check & Resource

2013-03-21T19:14:00.002-07:00

Photo credit: CDC

Are you part of the pro-vaccine mega majority? Do you wonder why mini-minority groups who distrust vaccines get such outsized representation in the media and, occasionally, policy? Wondering what to do about it? The new org Voices for Vaccines (www.voicesforvaccines.org) is the place for you. The below is from their recent launch and conference call.

Who is Voices for Vaccines?

When stories are told about vaccines in the media, among decision makers, and between parents, the parent voice that often gets the most attention is the antivaccine voices. The antivaccine movement has been excellent at shaping their story and getting attention as a legitimate, equal “other side” opposed to public health officials and scientists.

However, the vast majority of parents, well over 90% of parents, happily vaccinate their children. If the vaccine story were told with actual equity, only 5% of the story would cover the movement against vaccines, and it would be shaped as a denialism of the science supporting vaccines.

Voices for Vaccines seeks to reclaim that appropriate balance and to help parents, providers, and community members speak up on behalf of vaccination. These provaccine voices are needed in places like Vermont, where a well-organized antivaccine movement defeated a bill last year to tighten the personal belief exemption that allows parents to opt out of vaccinating their children. We also need these voices in Oregon where legislators are trying to provide real, truthful information about vaccines to those parents seeking to opt out.

To help people advocate for immunization, Voices for Vaccines gets the tools needed into the hands of those everyday people who need them. Our website hosts our toolkits, which so far include “How to Write an OpEd for Publication.” We are also working on a toolkit that addresses vaccine hesitancy and a toolkit that childbirth educators, doulas, midwives, OBs, and the like could give to new parents to help prepare them for vaccinating their children. To support our efforts, we send out a monthly newsletter that directs people to action and gives them up-to-date information about vaccine advocacy. Lastly, our blog provides a place for everyday people to tell their stories. Our members blog about why they vaccinate, how they became provax, and how vaccine-preventable diseases have changed their lives.

How we came to Voices for Vaccines.

The act of writing brought Ashley Shelby and Karen Ernst into this world of vaccine advocacy. Minnesota’s personal belief exemption is one of the least restrictive in the country. A parent need only get a notarized form saying that they do not want to vaccinate, and they are exempted from vaccinating their children. Karen was trying to figure out a way to have this law changed when she found Ashley’s OpEd in the Minneapolis StarTribune about making it more difficult for parents to opt out of immunizations. After reading this article, Karen tracked down Ashley’s email address and convinced Ashley to meet her.

From there, Karen and Ashley went to serve on various Minnesota Department of Health committees and also founded the Moms Who Vax blog. Moms Who Vax was a success. Ashley wrote much about political and news events surrounding vaccines, while Karen tended to debunking things antivax celebrities said. And then other mothers began to join in. Chrissy wrote about her conversation from antivax to provax after realizing that vaccines had not caused her son’s autism. Tristen wrote about how her pediatrician was able to convince her to vaccinate her child against chicken pox. And Katie wrote about her surprise that the antivaccine movement even existed.

At that time, the Minnesota Department of Health sent us to the National Immunization Coalition Conference where we met Dr. Deborah Wexler of the Immunization Action Coalition. Dr. Wexler asked Ashley and Karen to head up Voices for Vaccines and create in it a parent-driven organization whose purpose was to allow everyone to advocate for vaccines.

Connecting bloggers and their audiences to Voices for Vaccines

Because of our experience with Moms Who Vax and our vision for Voices for Vaccines, we are hoping that bloggers can connect their readers to the world of advocating for vaccines and that Voices for Vaccines can be one of those tools. We notice a bump in our membership each time we are mentioned in a blog, and as our membership grows, so does our ability to organize the pro-vaccine
community and make sure the conversation and the laws about vaccines are accurate and smart.

If you do decide to write about us in your blog, please let us know at info@voicesforvaccines.org. We will help promote your blog. We can also send our members to your blog if the comment section of any vaccine-related post needs intelligent responses.

Issues and triumphs when blogging about vaccines

The final portion of the conference call was a discussion about various issues surrounding blogging about vaccines. The discussion touched on comment sections, tactics of the antivaccine
movement, and appropriate imagery. The following links were discussed:

● http://www.motherjones.com/environment/2013/01/you-idiot-course-trolls-comments-make-you-believe-science-less
● http://blog.drwile.com/?p=3591
● http://www.wired.com/geekmom/2012/05/mayim-bialik-disappoints/
● http://lizditz.typepad.com/i_speak_of_dreams/2012/03/californias-ab-2109-strengthening-school-entry-vaccination-requirements-a-mild-change.html

Birth Mothering Shock & Processing

2013-03-14T22:32:00.000-07:00

I have a new post up at BlogHer. Since I used up pretty much all my word power writing it, I'll just excerpt it here:

I don't write much about being a birth mother, as ceaseless hand-wringing over "does my birth son know he's adopted?" gets tedious if you're not actually inside my head. Also, my previous birth mother essay on BlogHer is, in hindsight, laced with bitterness and not entirely respectful to my birth son's adoptive family. So I've been in a holding pattern: maintaining my distance, monitoring my birth son's public information because what else have I got, and trying to wean myself from a lingering hope that, as he's now legally an adult, he might contact me.

Then I found an essay he wrote for his local newspaper in which he defended his (adoptive) cultural and racial identity, and which made me realize he likely was never told about being adopted. And that made me heartsick -- not only because of the likelihood that I may never exist for him, but because he's probably been raised in ignorance of his genetic background. And that is not fair to him.

The comments are informative, supportive, and mostly great. It's worth reading just for them.

The post also talks about running away a few months after his birth, to live in Ghana. Here's a photo from that time. You can't quite tell, but I am sporting an anemic set of dreads (I didn't realize that my hair is not at all thick until just a few years ago). My Ghanaian friends thought my piddly little dreads were hilarious -- the thought of anyone intentionally letting their hair get matted was not popular in a country where people take pride in being well-groomed.

Don't Use Words That Hurt, People

2013-03-06T13:59:00.002-08:00

Today is Spread the Word to End the Word day -- meaning don't use the word "retard" as an insult or to describe something as less-than, no matter how casually or lightly. Here's what I had to say on the matter, with my characteristic delicacy, in Ellen Seidman's parenting column on Babble.com (thank you, Ellen):

"My son Leo has many challenges, but he has super-sonic hearing. And though he tends to stick to concrete matters when he speaks because speaking is hard work for him, he is an excellent listener. So if you use the word 'retard' as a slur and are around either one of us, then prepared to get schooled. Because Leo is not less of a person than you, is just as capable of being hurt by words as you—and as his mama-bear mama, I will sit you down and make you watch Jane Lynch's and Lauren Potter's Not Acceptable video until you beg for mercy. The word 'retard' hurts him, it hurts me, it just hurts. And you and your casual bigotry get no reprieve from me until you understand why."

And just in case you've not seen Lauren Potter's and Jane Lynch's Not Acceptable video, or could use a re-viewing, here 'tis. (But don't read the comments unless you are easily irked.)

Kid in Story: Finally, a GREAT Social Story App!

2013-02-28T12:21:00.002-08:00

Why do you want the marvelous, wonderful social story making iPad app Kid in Story? Why am I practically hopping up and down with excitement? Well...

Almost exactly one year ago, in a fit of characteristic irritation, I wrote a post on Developing Smart, Simple Social Stories Apps for Kids With Autism. About how expensive and clunky and complicated the existing apps were. About how difficult it is to find a decent app for creating the custom photo, text, and voiceover-enabled social stories my son Leo loves so much, the stories he uses to help prepare himself for transitions or trips, or to relive favorite memories.

Turns out, the development team at Locomotive Labs (formerly of Project Injini) were listening. And they didn't just make Kid in Story a great, easy-to-use social story creation app, but they went above and beyond -- including a proprietary image detection feature that "green screens" and drops your child right into their stories, either by taking an iPad photo right then and there, or by using a picture from your photo library. Here is Locomotive Labs' own Kid in Story app demo:

Kid in Story also features several story Templates that you can drop your kids into right away, from whimsical (Are Monsters Hiding in My Room? and Faces I Make) to practical (When Is It Time to Wash My Hands?) to adventurous (What Will I See in San Francisco and At the Playground)*. And new story templates like Let's Get a Haircut! are included in app updates. Plus you can share your stories easily from inside the app, using email or the free file sharing service DropBox. And best of all, you will be able to share the stories you create with whomever you like -- grandparents, friends, therapists, teachers -- with the free Kid in Story Reader app.

Kid in Story Templates

But don't just take my word for it. Tina Cobbs, a parent and educator, let me know that:

"This app is AMAZING! I am able to use it with my son who is on the autism spectrum as well as my kindergarten class. It is easy to use and you can create books within minutes. I brought this app to the attention of our school consultant and our district purchased it as well. I have used it as social stories and/or motivation to read."

What do Leo and my own kids think? THEY LOVE IT. So, so, so much. It is so easy to use! Witness:

From within the Kid in Story app, I used the iPad camera to take a (cute) picture of Leo.

The Kid in Story Image Detection feature automatically figured out which parts of the picture were Leo and which weren't.

I dropped Leo right into the middle of San Francisco's Alamo Square! (From the "What Will I See in San Francisco?" template.)

Kid in Story also lets you create your own custom stories from scratch. I took Leo and his sisters to Disneyland last week, and wanted to help Leo get ready to revisit his happy place. So I made a new Kid in Story social story using pictures from our last trip:

I opened a blank Kid in Story template, imported this photo of Leo at Disneyland in 2011, went into the Kid in Story "History" and retrieved that cute photo of Leo above...

...and used it to make the cover of Leo's brand-new Disneyland social story. He loved it! Familiar, yet new. So comforting.

Leo's sister Mali has been enjoying using Kid in Story to insert herself into favorite worlds such as Middle Earth, using the power of Google Images to find and import backgrounds:

Here she is in the Mines of Moria with her boyfriend Legolas the Elf.

And here she is yelling at the Balrog from Lord of the Rings, which she has longed to do since she was five years old.

It is a delight to see smart, talented developers use their powers to make the kind of apps our kids can use easily, which make them cackle with delight (India is so proud of getting to face off with that Balrog), and which are easy to share with the people in your life -- so that your child can have their social story available in all their iPad-enabled environments.

Now, let's see what we can do about getting a really helpful, easy-to-use Visual Schedule app going. I have ideas about that, too...

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*Disclosure: I was invited to write four of the story templates. Erm. I hope you like them.

It was a relatively good week, that meds-free week

2013-02-04T23:26:00.001-08:00

Apparently that last post put the whine meter arrow into the red, as my mom has asked if she can come up and help out for a bit. Which is very sweet of her. But I should definitely let you know that things are better now. It's definitely better for me to not be sick.

And here is where we are today: Leo is off Seroquel. He only spent ten days on it, total. He was agitated and upset on every one of those days, and everyone in his life noticed. His behavioral psychiatrist agreed that it was not a good choice, based on my reports (and possibly, the sounds of Leo being upset in the background while we spoke over the phone). He asked us to check back in after Leo was off meds for a week.

It was a relatively good week, that meds-free week. As the only benefits of Seroquel for Leo were soporific -- I'll take the happier boy who sleeps less, thank you. Matters were less good when he was bored or unable to find an outlet for his energy, but that is also true of his sisters. Happier Leo meant a much happier me.

We visited the allergist four days ago, which was both helpful and slightly amusing, due to that MD's perspective as a specialist: the previous week's neuro has said that Leo's hospitalization episode was not typical of a seizure -- but the allergist's take was that it was also not typical of an allergic reaction. But, the allergist also spent a full hour with us even though Leo was restless, and even though Mali (who had a tap for a nose and so had stayed home from school) kept interrupting my history with details both relevant ("anaphylaxis AND seizure, Mommy") and not (Minecraft tangents). The good doctor also said he would leave no allergy stone unturned, so Leo will be going back for skin tests, etc., and I have to call Smitten Ice Cream and ask after the ingredients in their Sticky Toffee ice cream, as that's the only food outlier for the day of his hospitalization. He also let me know that the new EpiPens have spring-loaded needles, so you don't need to slam them into the reactioneer's thigh -- just pressing down will make the injection happen, even through clothes.

Today we saw the neurologist who took care of Leo in the hospital, for the follow-up he requested. Though I came in hoping for some answers, any answers, his perspective was that at least Leo hasn't had any more seizures. And that is a good thing, hopefully something that will continue. He said Leo could come in for a follow up and EEG if we wanted, but honestly we didn't see the point. He also encouraged us to get a baby monitor instead of trading off sleeping with Leo at night, because neither Leo nor we are getting the kind of sleep we need to function under the current arrangement. He also said that there were no restrictions to Leo going to theme parks like Disneyland -- Leo just needs 1:1 supervision at the park, and since 1:1 is how our boy rolls at all times, he is good to go.

And Leo is also back on Risperdal as of today (tonight). It was the one-week point, we noted that the Risperdal hiatus was only really because of concerns about his appetite and cholesterol. And even though this past week was better, there were times when it wasn't (e.g., he shattered his iPad screen, and it wasn't entirely an accident). His appetite did not change at all off Risperdal and his cholesterol -- well, hopefully we can manage that with diet and exercise. We are trying to have Leo get in at least two hikes per day on weekends, and he is doing serious workouts (situps, wheelbarrows, etc.) during his respite sessions with Therapist V. Fingers crossed that we can revisit the happy Risperdal place that Leo mostly lived in from 2009 to 2012.

Even with all the goodness of the past ten days or so, Seymour and I are still very tired, because more plates than we can reasonably track keep spinning. He suggested after today's Leo neuro appointment that we get more respite for our boy, and I reminded him that California's autism insurance mandate means additional ABA sessions for Leo start in two days! (After months of hard work on Seymour's part, mind you.) Very excited, they are going to focus on supporting Leo's functional communication.

We are going to focus as much as we can on what makes Leo happy, on ways for him to be happy. Part of that is determining the proper medication that makes him able to tolerate just being in the world, part of that can be purchased (he asks to see the pictures of his Disneyland trip almost every day; I booked him a trip to Disneyland today), and part of that is making sure he has the space and opportunity to be his wild, wonderful, and free self. As he was able to be during an all-afternoon outing to Land's End, Cole Valley, and Golden Gate Park yesterday with beloved friends who just moved here from out of state. They are are our people, they are our herd. Leo was happy. (Mali was too, as was I.)

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Coda: I forgot to mention that Iz turned 14 last month (the shot is from her party). Um what? Two days ago she went to her school's Winter Formal and was by far the most elegant person there. Where she got that style and how she grew up this fast. That latter axiom is really beating the crap out of me and Seymour of late. Holy hell. Grateful she's a neat kid, and a nice kid. She won't accept compliments about her awesomeness because I'm her mother and I "have to say that," but I'm guessing you at least will take my word for it.

I think this drug doesn't work for Leo. And colds and poison oak suck.

2013-01-28T13:50:00.001-08:00

Last week's onslaught of illness and inconveniences and meds reactions and such is almost comic, in hindsight. I know plenty of folks who have more crap going on than we do and don't whine half as much, and I know specific people who don't realize how good they have it yet whine a whole lot more (if you're reading this and I know you read this, it's not you). But as this is my own, personal whining space, here goes. I'm just getting it all out so I can move on. It is essentially verbal vomit but I'm not all that coherent, and that's by my standards.

There were two codas to our loverly hike to the mushroom-and-slides park: It kicked off a horrible cold for me, and gave boss forager Seymour a gnarly case of poison oak, worst he's had in years. If you see him, coo gently. Anything louder might cause more uncontrollable itching.

The following day Leo had a dental appointment, so I drove down early to pick him up. As I arrived at his school, Iz called from her school with a migraine. The folks on her local pickup list were either having their own migraines or taking their own kids to dental appointments, so that's just the way things go some times -- I cancelled Leo's appointment and we picked her sad, aching self up (she was very grateful). My cold reached misery proportions, meaning even cold medicine was of little use.

The next day my cold miserableness continued (no stiff upper lip here just now). We started giving Leo his new med (Seroquel) in the morning as well as in the evening (evening having started four days before then). By 10 AM I had a call from the school wondering what was up with Leo, saying that he was asking for "Tylenol!" for his headache. I told them to please give him the Tylenol, and that I'd be down for a meeting with Leo's SLP by noon anyhow (that meeting went well -- more visual supports, possible formal AAC options). Leo made it until early pickup, but was still too grumpy for our usual Wednesday Costco run -- and he does not deserve to be a public spectacle. I know, he knows he's capable of great things and extended Costco runs when he's feeling like himself.

On the way home, Therapist V -- Leo's best friend in the whole world, and the only person who can really snap him out of his funkiest funks -- called in sick. (This cold, it's a bad one. I hope you don't get it. I'm still phlegm-diddly-umptious.) OK, so then I cried. But then I called Babysitter E, who said she could come for three hours later on. I'm sure I picked up Iz and Mali at some point. And after Babysitter E arrived, I tried a hot toddy and a hot bath. They did help. But even so I could hear Leo being unhappy. And if he's not happy, I can't be happy. That's how I feel about everyone in our family pod.

The next day (Thursday, just to provide an anchor) was more suckage. Leo thwapped his bus driver -- that's a milestone. The bus driver was a sport, I was not. Leo's school called again after he arrived to let us know he was extra-miserable. I once again approved Tylenol. And tried not to cry. Mali and I took on the Costco run, though in my head-congestion-fog I forgot many things. While we were waiting in front of Jennyalice's house for Leo's bus, one of his class aides (who was there to meet with Jennyalice) hung out with us, and let us know that Leo was being uncharacteristically aggressive in class. I tried not to cry again. Then Leo arrived, then we went to pick up Iz, then we dashed for our Thursday Keystone Kops episode in which I drop-kick Mali to a friend who drives down from the north and meets us at Iz's soccer field in a town halfway between our respective burghs, and I take Leo home to Therapist V, then drive back to the field to get Iz, all within an hour and I don't know if that even halfway makes sense. Mali got sent off, but Iz's coach didn't show. So she texted him, and he told her that practice was now in a field one town over. So we drove there and I drop-kicked her, then raced home already late for meeting Therapist V, who had recovered. Except Z called when I was halfway home to sheepishly tell me that her own practice had been cancelled and she showed up at someone else's practice and could I please come back and get her? AIIGH. She did apologize quite neatly.

Friday I gave Leo his Tylenol before he went to school. But I also picked him up before lunch for that neuro appointment. And before that even, I called his med doctor and asked if this med wasn't really the right one for our boy. The meds doctor said to reduce the dosage for a few days and then call him. When I arrived at school, Leo's teacher confirmed that it was another hard day for Leo but that they were all behind him (*sob*). Then we drove to the neurologist, who after a few minutes asked me about Leo's meds and when I told her he was on Seroquel, said "well, those obviously aren't working!" She also said that Leo's EEG probably wouldn't show much after he'd had Ativan a few hours earlier. She's more worried about his anaphylactic reaction than his seizures, didn't really have any advice about our current co-sleeping trade off with him other than to recommend baby monitors (which wouldn't have picked up Leo's clamminess or drooling or the other anaphylaxis symptoms that preceded his seizure, sigh), recommended we try another seasonal allergy med if Seymour is freaked out about Claritin, and as far as travel restrictions was again more worried about the anaphylaxis and recommends we not travel to areas without hospitals. She also said that it was OK for him to have nitrous oxide at the dentist's office. I'm putting that last because as hard as it was to see Leo having such a difficult time during that appointment, I held it together. But then when it came time to ask her about the nitrous oxide, I couldn't retrieve the word (I'd forgotten to write it down, and when I tried to write it down, the word wouldn't come -- I could remember everything about it, that Steve Martin huffed it in Little Shop of Horrors, that its molecule has only three atoms -- but I couldn't write it or say it or see it. So then I did cry, but not for the reasons the neuro thought I was. Sigh. (Disclaimer: previous passage is neither medical advice nor likely an accurate recollection of what the neuro said.)

[Following two Friday paragraphs added a few hours later because my brain is a sieve but this is CRITICAL]

So we left the neuro, and set off to Leo's favorite Indian restaurant as a reward for him getting through the appointment. The restaurant he's been going to since before he was born (and where we had his baby shower, in fact), where the owner gave him a cute outfit when he did arrive, where all the waiters started laughing when I told them Mali's real name, and where Leo decided to start eating saag paneer voluntarily. The restaurant that was barred and shuttered and gated, with a sign that they'd been unable to renew their lease and were very sorry to go. AIIIIGGGGHHH!!! AAIIIIGGGGHHH! I am still processing this one, because it's my favorite restaurant too. It's where we take everybody. Thankfully Leo was a sport and willing to go down the road for a croissant.

We went home to meet Babysitter E for our usual Friday night babysitting gig. I was excited because a dear friend had invited me to her birthday celebration. But as Babysitter E's arrival time neared, Leo's mood darkened. And it soon became clear that I needed to stay, just in case things got interesting. So I did. And things did get interesting, but not because of Leo (he settled into calmness after a couple of hours). Seymour called halfway through the evening to let me know Iz had sustained a concussion during her soccer game and they were headed to Urgent Care. She'll be fine but damn it all. Though I think she was quite pleased about being ordered to rest -- she watched about 10 episodes of silly TV on Saturday alone.

Saturday. I didn't give Leo any Seroquel at all in the morning, and only a half dose in the evening. He had a lovely, lovely day. (He also had two hikes and we spent the evening at another wonderful Disability-friendly museum day with friends like Emily and Lisa and their families, see photo above.)

Yesterday (Sunday): Half dose of Seroquel in the AM and again in the PM, and another grumpy day. Though not quite as grumpy as some previous days. I think it's time to call his meds doctor back. And I wish the research on autism and meds had some definitive answers for people like Leo, because it's just so unfair for him to have to be a guinea pig like this. He hates it, I hate it. But there's currently no other way to help him except this kind of educated trial-and-error.

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This is essentially a purgative. I feel better, thank you. If the above is tl;dr or confusing, here's the short version again: I think this drug doesn't work for Leo. And colds and poison oak and concussions suck.

[Added a couple of hours later] To be clear: I am mostly remembering this with detached amusement, now that I'm not sick. But also I'm just not myself. Example: I was convinced Leo had a 2nd neuro appointment today. So I arranged for the girls to be picked up by friends. Except Leo's appointment wasn't today -- it's in a week. Which I only discovered when I called the clinic to ask how construction was affecting parking. So I contacted both parents and apologized and offered to take their kids out for treats instead after school. Which went really well! Except that while I was taking Mali's friend back home from frozen yogurt on our way to meet Leo's bus and then pick up Iz and her friend from high school, I got a call from my eldest -- it was early release day and they'd been waiting for 30+ minutes for me to arrive. Arrrgh! But thankfully they are big kids, and did not mind getting pizza later than they'd expected (Leo didn't mind the pizza, either) I want my brain back, people. I am surrounded by smart people who are able to function at top speed through all manners of things. It's embarrassing.

How to Keep a Sad, Unsettled Kid Relatively Content

2013-01-25T10:39:00.002-08:00

This remains the best playground for Leo right now. It's somewhat hidden, you either have to hike fifteen minutes to get to it, or pay a fairly steep entry fee to gain parking lot access via a winding back road. And Leo gets to be sentinel (preferred), pacing a path while observing the action around and below and only participating if he wants to (though damn does he also love those slides -- they are metal, and if you kick them on the way down it makes the loudest, most reverberating BONKS).

We hiked, of course. All of us. Because the playground is near the top of a beautiful, oaken, mushroom-dotted hill covered with the sort of clearly delineated not-too-steep paths Leo prefers because he knows exactly where to go, and can run back and forward and up and down and vent some of that boundless energy. The girls enjoyed the hike too, once they were there (they sometimes need coaxing to pry their eyes and fingers off the iPad Minis their generous grandparents gave them for Xmas, but they are like I used to be at their age re: Catholic mass -- I didn't want to go, but I liked it once I arrived). (Yes that woman in the leather jacket and jeans is Iz.)

It's good to get out, and spy fungus like these Big Gyms. They make us all happy. And we can use some happy these days -- Leo continues to have a hard time, and we continue to wonder and worry and experiment. And mostly, to fail at finding ways to help him be settled and content -- except when we hike, and go to this playground. He was happy the entire time. Winter, go away! You suck! Leo needs long sunny days and lots of outdoor time and exercise.

One of the more frustrating aspects of seeing Leo in such a state is popping up for some air and news and being confronted with articles like Amy Lutz's attack of the Neurodiversity movement in Slate.com (which I critiqued at TPGA). Because the thing is, things have been shitty here lately. They've been really hard. But they've been hardest of all for Leo. So -- for me -- that means I need to work harder to find answers and support for Leo. Our family's rough patch does NOT give me ammunition with which to "attack disabled people for the crime of appearing less disabled than [my] own child," as Lutz did. As I wrote in one of the comments, "While I do have compassion for [Lutz's] situation as a parent since it is quite close to my own, I am outraged that she used the power of a Slate.com pulpit to spread her own fear and resentment about autistic people, rather than to issue a call for better services for her son. Publicly scapegoating a minority group in the name of fear is never, ever justified. I won't stand for it." But I could use a candy cap soda from The Ice Cream Bar. (That's a candy cap, above.)

Lutz's article reminds me of the time the parents at Leo's co-op preschool nearly rioted at a nutritionist who came in and declared that, if your child needed protein and fat and refused to eat anything containing either unless it was a GoGurt bar, then eating refined sugar was an acceptable trade-off. (Maybe they would have preferred for their kid to eat a sugar-free delicious milk cap, pictured?)

There are so many autism parents who already believe neurodiversity activists are some sort of Spectrum Supremacists/Separatists who want nothing to do with the high-support kids like Lutz's and mine. When in fact Neurodiversity advocates like the folks at ASAN identify strongly with the Disability movement as well as the autistic community. And essentially want what parents want for their kids -- better education, supports, rights, practices. I hope Lutz sees this eventually.

I'm off now, to see Leo's primary neurologist, with a second neurologist appointment next week. Here's my list of questions. I hope the doctor is able to give direction, if not answers:

-Is there a causative link between his anaphylactic shock and the seizure?
-What kind of sleep monitoring does she recommend (we are currently trading off nights sleeping with him).
-Can we resume his usual seasonal allergy med. It's the last thing he took before his seizure, so we're leery.
-He started Seroquel last week (replacement for Risperdol), and so far we're not impressed. It seems to come with bad headaches that then spawn unprecedented aggression. Tylenol helps a bit, but this doesn't seem like an acceptable side effect.
-Are the headaches, though, exacerbated by his stopping his seasonal allergy med?
-Seroquel also seems to give him bloodshot eyes (not as red as that russula above, but still).
-He also has an eye twitch. Could it be from the after-effects of sleep deprivation (as that's what happens to me)?
-What are Leo's actual travel restrictions?
-Can he have nitrous oxide at the dentist's office (a side effect can be ... seizures).

I am crossing my fingers, always. I would make a joke about the violent barfing-then-hallucinating properties of the mushroom to the left, but I don't have the energy (stay away from them, kids). They're pretty, though.

Hopefully Leo will be feeling better and up for another hike this weekend. And we'll have better ideas for making his life easier.

Second Opinion

2013-01-17T12:41:00.003-08:00

We can get used to just about anything, we humans (except possibly teenage behavior, which, thankfully, is a phase). So when I took Leo in to his wonderful pediatrician this morning to follow up on next steps for his seizure and anaphylactic shock episode, I was expecting allergist and neurologist referrals and another EpiPen prescription, possibly a conversation about seasonal allergies and whether or not his recent hoarseness is due to those, the after-effects of emergency intubation, or his voice changing -- not a conversation about how Leo's behavior has gotten out of control.

Because I've gotten used to how different Leo has been since his seizure. And maybe just how gradually different he's been since stopping Risperdal three months ago. He's become more bumptiously active, not necessarily in a bad way though he did accidentally run into his grandmother during Christmas -- something she's always been worried about, and even though she said she was OK she was also shaken. He has been having a harder and harder time getting through our usual outings and excursions without getting upset -- about not getting a treat at the grocery store (never a guarantee), or not getting take-home pizza at Costco (also never a guarantee). His teacher has let me know that the last two weeks have been ones of unprecedented classroom activity and sensory-seeking, so much so that they now have a stand-based punching bag in the corner of the class for him to unleash all his excess energy. And he's been having a devil of a time falling asleep at night, though in the morning he does not want to get up when the alarm rings, which is also different as he's usually our alarm.

I can absorb this all now, in hindsight. But I couldn't recognize that yes, his behaviors were not within standard operating parameters, not until midway through this morning's appointment when he had a stimming cavalcade -- of hitting me. And then he hit his doctor. It wasn't even truly aggressive, more puckish than anything else, because he was not angry and kept smiling the whole time. But it hurt, and he didn't seem to be able to stop, and since I cry if people look at me funny you can imagine the sobbing wreck I shortly became.

Though his pediatrician took her hit in stride (she often spends her vacations doing humanitarian medical work in areas of conflict), she also let me know she was seriously worried about Leo, and would be putting in a call in to his behavioral pediatrician -- the doctor who prescribed Leo's Risperdal. Who called me less than 15 minutes after I arrived home. And let me know that it's probably time to revisit meds ... if not Risperdal, then the Seroquel we'd been intending to transition him to anyway three months ago. I just need to call the neurologist Leo's pediatrician did in fact refer me to, and ask her if Seroquel would interfere with any of the tests she'd want to run on our boy.

I don't have a problem trying a new med for Leo. I really don't. Um. But I have to admit that in my heart of hearts I was so very much hoping Leo had outgrown the need for behavioral meds. Because I don't like meds. I don't like to take them, I don't like my kids to have to take them.

And that is selfish, because my son is teetering on the edge of a behavioral precipice right now, and if he falls over that edge -- if his behaviors spiral so badly that he can't focus, can't go to school, can't leave the house, or we can't have friends visit -- all because I don't like meds -- then that makes his life suck and makes me a bad parent.

----

In other current news, I'm pissed about Amy Lutz's one-sided neurodiversity hit piece on Slate, and think you should read Emily Willingham's Forbes article Can People Really Grow Out Of Autism?, as it includes perspectives from autistic people. Under typical circumstances I would shred the former and write my own piece on the latter, but critiquing via a spattering of social media and typing the post above is all I got for today. I'm going to go pet my cat, pretend I can't see the mess that is my house, and then pick up my kids.

We Don't Stay Home: Playgrounding

2013-01-13T22:29:00.004-08:00

Here is what we're doing right now: Lots of playgrounds. Too bad there aren't any good ones in our area [snort, see below, I've been advised not to reveal too much about names or locations as we like our playgrounds not-too-full].

Leo is still finding his feet, temperamentally, after the hospital or maybe after the winter break. One more week of being back-to-routine (yay routine!) and we'll see how he's doing. But no more seizures as of this writing, so that's good.

Mostly-photo posts are about our speed just now.

New Year's Day 2013 & Full-Family Foraging

2013-01-01T19:24:00.002-08:00

Today was a particularly bright, gorgeous New Year's Day, so we spent it in San Francisco's McLaren park. Seymour & his team filmed a 2011 Fungus Fair documentary there, so he wanted to revisit mycologically active sites. We found several different favorite species, and enjoyed tromping around -- it's a great park for casual hiking. (If you visit the park, know that it's a haven for happy dogs and their humans, and not all will be on leash.)

Happy 2013, all y'all.

Our new family portrait?

Panther Amanita just past the egg stage, or so we think.

Running down the hill to let us know she'd found candy caps behind Jerry Garcia Auditorium.

Getting those candy caps!

Siblings. I love seeing them be nice to each other.

The view to Oakland from the top of the park. *waves at friends*

Yellow staining milk caps are pretty.

Happy Endings

2012-12-31T10:21:00.002-08:00

Leo's photo of his hospital room (note Sully & Mike).

Leo is back home and happy after an anaphylactic reaction & seizure sent him to the hospital for a bit. We still don't know why it happened, but we now have an EpiPen in case he has another allergic attack.

And we don't know what this means for the long term. Folks on Thinking Person's Guide to Autism's Facebook page weighed in with 40+ perspectives on autism and seizures, as did several friends with ... expertise in the area, for which I am thankful. Short term, Leo may not travel outside of immediate assistance bounds (no long plane flights, no remote Sonoma mushroom foraging raids). I'll need to find out if his school bus driver is trained to administer the EpiPen. Seymour and I are taking turns sleeping with Leo, who is so delighted at having a slumber party that he'd rather snuggle than dream.

I do know that we are so, so, so lucky. I hope I don't need to enumerate why. It's not the way I would have chosen to close out 2012 -- and we could all use more sleep -- but I will be entering the new year in a state of profound gratitude for our family, friends, and healthy kids.

Best wishes for your own 2013.

Listen to Leo!

2012-12-12T22:08:00.003-08:00

My mother, bless her tolerance for chaos, went home today after spending a week with us while Iz soccer tournamented, Mali was a hip hop Snow White dwarf in her school play, and we accompanied Leo and his class to a local Winter Wonderland festival. I don't know if Seymour and I would have survived the week without a third parent. We certainly wouldn't have had any clean dishes. My gratitude, it is boundless. Without boundaries. You ever want to see me do backflips, come over and help out in our kitchen.

My mom was also helpful with the never-ending food prepping -- Iz is vegetarian and Leo and Mali have divergent takes on super-pickiness, so unless we're having cheese pizza there are always at least two tracks for every meal. And lately those tracks were accelerated, given all the activities (Mali had play practice every single night until 9:30, then three performances; Iz has soccer practice 3x/week plus tournamenting; Leo had several sessions with Therapist V). So sometimes we got a bit rushed and inattentive. Which Leo doesn't put up with, if it imperils his meal. Doesn't put up with, at all.

Example: Last night we went to my cousin's house for dinner. Which was to be ribs. Which Leo will eat when hell freezes over. So before we left, my mom offered to make Leo a PB&J sandwich to take with us. But Leo wouldn't let her get on with it -- he kept running back into the kitchen, getting in between her and the counter and telling her "Peanut Butter!" and we kept shooing him out, asking him to let us finish the sandwich so we could get out the door. Except after the third or so pass -- during which time no sandwich got made -- I realized that my mom had accidentally taken out the almond butter instead of the peanut butter -- and Leo does not eat crappy-tasting almond butter unless he absolutely has to.

It's not Leo who was operating at a communication disadvantage last night.

We apologized to Leo and went on our way, and had a lovely evening. But it was a good reminder for both me and my mom to really listen to Leo when he's trying to communicate, even when we're in a hurry. Because he's usually the one who's right.

Soul-Endangering Nutella Cupcakelets

2012-11-30T22:06:00.000-08:00

Mali's week of 8th birthday festivities came to a close today, with two parties: one in her class, the other her "real" birthday party at a jumpy house palace. For the latter, she chose a Costco cake (score! from a labor perspective); for the former, she requested Nutella cupcakes. Um. OK. Commence Internet research.

The mini-cupcakes I ended up making (and which had folks on their knees) drew on three components:

An appreciation for the nom nom ease of yellow cake mix.
A realization that full-size Nutella cupcakes would be sugar WMDs. They'd take the tops off Mali's classmates' heads.
A preference for speedy buttercream frosting as opposed to finickier double-boiler options

You want to make them too? Well then:

Get some yellow cake mix. (Oh, come on. Yellow cake mix rocks.) Mix it up. Make mini-cupcakes with it. I recommend a barely-oiled silicone mold or cupcakelet papers.

When your bitty cupcakes are cooked and cooled, cut a divot from each top:

Fill each divot with Nutella
(Quarter is for size context,
divot cribbed from Baked-In.com)

Top with Kitchen Treaty's shockingly straightforward Fluffy Nutella Buttercream frosting.

Hold cupcakes in front of you while proferring, or put on a table and stand back. You don't want to get trampled. These bites are amazing.

Irony: Mali didn't like them. But she likes nothing except quesadillas, fresh blueberries, and Nutella from the source, so.

Please share and enjoy and consider yourself warned.