The Coolness of Being Thirteen

Thirteen is cool, says my eldest daughter Gisela, who should know. She says thirteen is when people take you seriously, because you're finally a teenager. Thirteen is different. It matters. You matter.

For me, hers is a bittersweet declaration. I am astounded by the lithe, strong, clever, independent-minded young woman she is turning into, but I'll admit -- I really liked the before-teen phase, with kids who were not self-aware about coolness, still mostly obedient, who still looked up to me as the ultimate font of knowledge, had no hangups about hiking with Mommy, playing family geography trivia games, and agreed that Star Trek marathons are a fantastic way to spend quality time together. These days, she'd much rather code Tumblr themes.

Mine is a selfish perspective, admittedly. But I suspect many parents in my spot also long for the days when their now-skeptical, slightly haughty teens were still kids, as well as wide-eyed, trusty companions & sidekicks, even as we embrace the people they are becoming.

I write 'kids' because Gisela has a younger brother Leo, who is also approaching teenhood. She is a few months past thirteen, he has a few months until thirteen. Leo pushes those teen buttons differently than Gisela because he is not her, and also because he is Autistic with a capital A. While Gisela will now debate with me outright about choices and chores, Leo -- who reserves the right not to speak unless it really matters -- will merely give me a sidelong glance to let me know that he heard me but has no intention of complying, then take off in the opposite direction.

What thirteen has not changed is their relationship with each other. They have never known a life outside each other's periphery, have always had a deep affection and connection with each other (though they both bicker like jaybirds with their eight-year-old sister India). Gisela is one of the few people who can help Leo calm down when he's distraught and not able to self-soothe. Leo always accepts Gisela as she is -- he doesn't care whether she has the right shoes, makeup, or hair (all potentially earth-shattering choices for Gisela's version of thirteen), he's always glad to see her. I am glad they remain the sweetest of companions to each other, even as they push back at me, even though I don't hold them even remotely responsible for how that pushing back makes my heart ache.

But whenever that pushing back really hurts, I can always remind myself how lucky our family is, just to have all three of our kids so alive and so healthy. Gisela and I just returned from a trip to visit friends in Ghana, a country that has had many successful vaccine campaigns. However, it was very clear during our visit that other African countries still struggle to get vaccinations to all those who deserve protection from vaccine-preventable disease. Gisela's good fortune in being fully vaccinated was not lost on her.

I am also glad my kids are alive and healthy, because when Leo was first diagnosed with autism, I was one of those smart, well-informed parents who nonetheless blamed vaccines. I regret this lapse in judgment, hope my ignorance was not contagious, and now work very hard to share legitimate vaccine information (i.e., the evidence is against a link to autism) in the autism and parent communities.

And I will continue to hug both my teens as hard as I can, any time they will let me. Even if it's not always cool.

This post is inspired by Shot@Life, an initiative of the United Nations Foundation that educates, connects and empowers the championing of vaccines as one of the most cost effective ways to save the lives of children in the world’s hardest to reach places.

During Shot@Life’s Blogust, 31 bloggers, one each day in August, are writing about moments that matter. For every comment on this post and the 30 other posts, Walgreens will donate a vaccine (up to 50,000 vaccines). A child dies every 20 seconds from a vaccine-preventable disease. We can change this reality and help save kids’ lives!

Sign up here for a daily email so you can quickly and easily comment and share every day during Blogust! Stay connected with Shot@Life at www.shotatlife.org, join the campaign on Facebook and follow them on Twitter.

Every last comment on this counts -- even a WOOT -- so spread the word, and help stop the spread of vaccine-preventable diseases.

Leo Turns Our Car Into an iPad!

We got a new minivan. Same minivan as the older minivan, so, still the perfect balance of convenience and whatever the feminine version of emasculation is. But this is a 2013 model, which means it comes with things like hands-free cell phone integration (whoa!) and a USB port that connects to Leo's iPad.

The latter is rather mind-blowing, especially to Leo, because it turns the ENTIRE CAR into an iPad speaker. Have you ever heard an app like the wacky, free-form, psychedelic Cosmic Top in full surround sound? Or the PFUDOR video? Or Monsters Inc?

I love living in the future. Especially a future that gives our boy yet another way to be really damn happy.

My Own Personal Kaiju

Leo has been a fish for a long time, what with taking to swimming and body surfing without needing lessons, as fish do. And he's a social fish, an affectionate fish -- he doesn't like to swim by himself, and specifically he wants his parents to swim with him. His dad is the better sport about this, as you might suspect -- I'd not been in the pool once this summer, and my preferred pool participation position is from the sidelines, as this photo demonstrates.

But, since Leo is nothing if not persistent,  he made sure I finally went swimming yesterday. As I leaned over the side of the pool to ask him to come out, and offered my hand to help him exit, he leapt out of the water like a Category III Kaiju, grabbed my arm, and pulled me into the pool with him.

I suppose if we had needed to go anywhere afterward, or if I was wearing shoes or a watch or carrying my phone, I would have been upset. But since it was a wide open weekend afternoon, as I know better than to bring any such things into the splash zone, and since all that really happened was my getting to experience what my family has been telling me for months -- that the water is the perfect temperature -- I enjoyed the experience for what it was: the physical embodiment of our good fortune of living in California and having a pool. Being in the water felt so ... great.

And then I hauled Leo's butt out of the pool because, you know, follow through. All three of our kids are masters of the feint and the redirect, and as parents our words need to mean something.

But I might actually get in the pool voluntarily, before this summer's out. Thanks to Leo, my own personal Kaiju.

10 Years of Squidalicious

I suppose there should be more fanfare about one's ten year blogging anniversary (which I've missed by a couple of days), but Dude, it's summer, we're all in a relatively good space, and I'm focusing on appreciating what we've got in the IRL. I'll write something soon in this space about our trip to Ghana, and you can read my recent interview with Dr. Paul Offit, until then.

For some serious contrast with how things are now, here is me heading off into the misguided autism/biomed wilds one decade ago.

And for some visuals on where our priorities are now, here's Leo showing his innate wave riding skills in San Diego, last week:

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

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

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

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

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

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."

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

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.