12.31.2012

Happy Endings

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.

12.12.2012

Listen to Leo!

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.

11.30.2012

Soul-Endangering Nutella Cupcakelets

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:
  1. An appreciation for the nom nom ease of yellow cake mix. 
  2. A realization that full-size Nutella cupcakes would be sugar WMDs. They'd take the tops off Mali's classmates' heads.
  3. 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.

11.26.2012

Suddenly She's Eight Years Old

This girl is eight years old today. This fiery sparkly spunky visitor from the planet Extroversia, who keeps both herself and those of us in the audience so very entertained.

Though she'd want you to know that she's not actually eight until 11:54 tonight. But it's her birthday regardless. And that means dinner at the Lobster Shack (because they make the best grilled cheese sandwiches, obvs), and a bouncy house party later this week, and that's all very exciting.

What amazes me, though, is how very little she requires to fuel her marvelous version of reality. When asked what she wanted for her birthday, she thought for a while and said, "Another episode of the Power Puff Girls?" because they're not on Netflix. And when a girl has access to the local public library and Netflix and one's house is full of cardboard boxes and tape and Sharpies and colored pencils and pens -- really, what else is needed, or desired?

Here are some of her created objects from just the past two days at home:

Go-Kart. Note booster seat-enabled caboose.
Go-Kart front bumper. (Who taught her to write
"Bow-chicka-wow-wow"? NOT ME.)
Unicorn sailing ship with a very long name
incorporating "Dawn Treader."
I do realize she might not always be this embodiment of carefree awesomeness and explosive creativity -- puberty does strange things to a person -- which is one more reason to celebrate who she is right now. And to keep my fingers crossed. And to relish her very self this very moment, as in this video about her "magic waterfall":


Sometimes I think she deserves a mother more like her -- someone whose imagination is equally wild and on fire -- but then, perhaps I'd contaminate her. Mostly I try not to overthink it, just relax and enjoy and appreciate and be grateful for having her in our lives.

11.19.2012

Rock This Way

Leo went off Risperdal last month. We were going to transition him from Risperdal to Seroquel because the Risperdal was affecting his cholesterol levels, but during the meds-free part of his transition he did so well that we just ... kept him off. And are continuing to do so, with his doctor's full support. Most of the details are in the BlogHer column I wrote last week. In general, he's doing well. Some hiccups with having a hard time getting to sleep (Risperdal is soporific stuff) but they're minor and entirely reasonable for anyone who essentially just went off sleeping pills, and his sleep is not otherwise disrupted. Which is healthy for a growing kid.

I'm observing him extra-closely just now because we're a data-focused family. It's important to know how his post-Risperdal behaviors compare to those from past years, especially as the Halloween-birthday-Thanksgiving-Christmas season is challenging for him regardless, what with schedule disruptions, sweets, visitors, travel. If he's having a really hard time -- an uncharacteristically hard time, rather than reacting to seasonal circumstances -- we want to know.

So I'm noticing. I'm noticing remarkable things, like how he uses his iPad to manipulate music. He has always enjoyed using his tablets' icons (so friendly to visual types) to hit favorite beats and moments in music and videos. But if I wasn't noticing, or if like his more sensitive sister I found it difficult to tolerate the ensuing seeming cacophony, I might get irritated. And I might have missed the resulting patterns he's creating -- essentially his own, custom music compositions.

He strings together and then loops the introductions to songs like Everybody Wants to Rule the World and Right As Rain, alternating precisely, stopping before the vocals in each. Because those vocals don't match. But you know what does match? The two songs' propelling beats. They're mirrors, they make a pair. If he knew how to splice them into a mashup, I'm betting he'd do it. I'm guessing he might, eventually.

Until then, keep noticing, everyone.

11.09.2012

Happy 12th Birthday Leo!

This boy, who was given a diagnosis of Extreme Cuteness about the time this photo was taken...


...is now this boy. This handsome 12-years-old-as-of-today boy.


We are going to spend his birthday -- and much of the weekend -- doing exactly what he wants to do. Eating cupcakes in his class. Going to his favorite Indian restaurant for dinner. Going to see "a movie!" if we can squeak it in -- possibly Wreck it Ralph, as certain folks appreciate its neurodiversity message. Staging a Quirky Kids takeover of a local jumpy house palace to celebrate the Leelo-ness of Leo. With pizza. And his requested "chocolate cake!"

And I will continue to marvel at how the sweet, cute boy above -- a boy who will not put up with a "boy" label much longer -- continues to defy the klaxons of doom that so many experts set off around him when the first photo was taken, who continues to grow and mature and gain skills and ... need us less. (*sniff*)

At 5:30 this morning, I heard his bathroom door slam and walked over to see light streaming out from under it. Leo was standing nearby in his bedroom, looking groggy. I stomped over to knock on the bathroom door and grouch at Iz for waking her brother up -- except lo, there was no one in the bathroom, because the light-turner-onner and door-slammer was Leo, who had needed to pee and just wanted to go back to bed, Mom. Leo, who didn't see why door slamming and leaving lights on were such a big deal. Who thinks I should know by now what 12 year old boys do as they wander around their natural environments. Who was giving me an sincere, bleary-eyed WTF look. Who did indeed go back to bed until it was time for his birthday blueberry pancakes.

Happy birthday, sweet boy.

(I can still write "boy," damn it.)

11.05.2012

Rights and Compassion: Why I'm Voting for Obama

The baby boy in this picture will be 12 years old in four days.
Leo was born just a few days after Election Day of 2000. I had fully expected the election itself would be over and done with by the time our boy arrived (it wasn't), and had never thought that a slippery buffoon like George W. Bush could become president (e.g., he lost the popular vote). That election, and Dubya's country club-style presidency, popped the earnest bubble of beliefs in which I was living, made me realize I was taking the pervasiveness of democratic and liberal ideals for granted.

Still eager and dewy-eyed, I became convinced that all I had to do to convince someone they had placed their faith in the wrong candidate or cause was show them the facts, show them evidence. Because who wouldn't put their faith in what I considered demonstrable truth?

Twelve years later, I no longer believe in evidence as a trump card. Facts don't convince true believers, they make them retrench. Examples:
What can we do? I've been writing a lot about acceptance lately, and I guess another form of acceptance is understanding that some people cannot process what they don't want to hear. Acknowledging that true believers want things simplified and palatable -- they do not want to wrap their heads around complexity, even if they think they do, like billionaire Leon Cooperman -- who took two painstaking weeks to write a screed about Obama's "divisive language" that then turned viral, yet who considers our President's background as a community activist, law professor, successful author, & senator as "never having worked a day in his life." Yet I also know repeated exposure can bore through rock, and so ideally through rock-hard beliefs. I have to believe that people want to think, they just aren't always encouraged to do so.

For a while, I thought avoiding direct engagement or not citing names while persistently speaking out was the best way to get messages out. That if one must confront reductionist true believers, then a calm and professional attitude would enhance the very rightness of the right messages. Staying on message, unflappably, would eventually get through to ... if not the zealots, possibly those in the zealots' thrall. But, as we saw in the first Obama-Romney debate, behaving like an adult when the opposition goes on a By Any Means Necessary rampage makes one look flat, uninvested, and lacking in conviction.

So what is the right approach? I'm circling back towards speaking the truth and calling out falsehoods while avoiding outright smackdowns, the model Obama deployed in the second and third debates. I'm still working on it, because I'm an easily-riled hot head (e.g., anti-vaccination paragraph above). I can't stand by and watch people like Mitt "Tax Returns" Romney lie and evade and spin, and not call them on it. But I can avoid sinking to their level, can avoid treating people as unthinking, gullible sheep.

Twelve years later, we're all lining up to the polls again. Or trying to. And hoping that our votes will actually be counted. And I'm no longer that innocent expectant mother of 2000, who believed democracy and integrity would prevail because duh. I'm terrified that four years of Republican obstructionism will come to fruition at the polls tomorrow.

My vote is my way of speaking out in defense of what is ethical and what is just, a near-sacred duty as it means speaking for my children, who cannot yet participate. I do not know what their future holds, but if they are disabled, LGBT, unemployed, impoverished, or unexpectedly pregnant -- disadvantaged in any way -- I want them to live in a country that treats them with respect, dignity, and understanding. As fellow citizens. As the citizens their immigrant grandparents were able to become, via a process that brought every non-Native American to this country, FFS. And I want that respect and dignity and understanding -- what's right, not what's soothing to believe or easy to hear -- to prevail in our country, now.

That is why I'm voting for Obama.

10.23.2012

A Whale of a Tablet Tail

That parasite-looking attachment on the back of my Xoom tablet is a cool new product from Octa called the Tablet Tail. They sent me one to try out, and I do have to say: it is extremely nifty.

It suctions to the back of the tablet, then its flexible tail lets you prop the tablet in landscape or portrait mode. I use my Xoom primarily for watching Netscape videos or listening to podcasts while I grudgingly do housework, and the tail makes my tablet easy to prop up anywhere -- even on uneven surfaces (see below), which is not something cases with built-in stands are good at -- they tend to topple over.

The tail also makes a handle that's easy to grab (checking that the silver suction indicator tab is fully engaged first, of  course). I also tend to use the Xoom for social media pictures and video, and the tail doesn't get in the way.

I carry and use my Xoom all over the house, all day long. (We're a family of five. The housework is never-ending.) The Tablet Tail makes that all-day-long carrying-and-propping so much easier. I like the Tail. A lot.

There are caveats, of course. It needs a 3-4 inch diameter flat spot on the back of one's tablet to suck on to. This means it doesn't work with my son's iPad's current Trident Kraken protective case, as the back does not have any flat areas of sufficient diameter. But it works well on the back of tablets themselves, which is great for Xoom-users like me who rarely use cases, or iPad users with Smart Covers or any tablet user with flat-backed plastic or metal cases.

The other caveat is the price -- currently $49.99. I know there are gear heads for whom cost is a secondary consideration, and for you folks I say Go For It! I think it's also an excellent stand-case substitute for folks who only use their tablets at home, for reading, social media, and video-watching, and who either have no kids or are adept at keeping their tablets away from their kids. Or for families whose kids are unlikely to Hulk Smash! or drop their tablets. But the price is a bit of a surprise to me.

Still, I use my Tablet Tail all day long. It does exactly what it's designed to do, it does it well, it is one of those little adjustments that makes my life easier. It's a good product. If the price point is not a hurdle for you, then I recommend it.



Disclosure: Octa gifted me our Tablet Tail. However, I only write about the products I really like because honestly, who has the time?

10.22.2012

Competence and Constant Vigilance

A persistent hindrance to increased independence for people like Leo is parents like me overlooking opportunities for self-care and competence. Sometimes this happens because we find it quicker and easier to take care of breakfast preparation or our kids' tooth brushing ourselves, sometimes because in our day-to-day rush we forget to check in and see if new skills have emerged. It takes effort and vigilance to give Leo the chances he needs to demonstrate competence.

Like yesterday, when Leo asked me for mango juice. I was about to pour it for him, but instead stepped back and asked if he wanted to pour it himself. Which he did! He even put the lid back on the carton (a twisting/screwing motion) with one hand while drinking his juice with the other. That's some serious bilateral coordination. Which I would have missed, had I not slowed down and handed over the reins.

I consider scenarios like this part of Autism Acceptance: being able to appreciate that it is totally fucking awesome for my nearly-12-year-old son to pour his own juice, without any bittersweet undertones. This is not denying Leo's reality, or mine. This is understanding what autism means for Leo, and adjusting to his natural patterns of rhythm and growth -- patterns which have nothing to do with most kids his age, but which are far from rare either currently or historically.

Part of the difficulty many people have with Autism Acceptance is understanding why it is not an attitude of surrender or denial, to which I can only respond with our own experiences:

I'm not only constantly vigilant about Leo's competence, but also his safety -- when he's excited or upset, he likes to whoop and gallop away from me without necessarily noticing dangers in his vicinity. Dude, I'm on that -- who wouldn't be? When we're out in public, we're a hand-holding duo; if he's in an excitable mood, we stay home and he can gallop all he wants. I accept that.

I'm constantly vigilant about his education and needs -- we're re-evaluating his ABA home program now that our state has mandated insurance coverage, and also pushing for an AAC evaluation. We're re-gauging his reading readiness. We've just finished setting up a special needs trust with the understanding that Leo's long-term educational and living needs will likely be different than many -- but not all -- people his age. I accept that.

The most important part of Autism Acceptance, however, is understanding that Leo is not an empty shell, or a changeling. There is not some alternate Leo trapped inside his body, waiting to escape. Leo is Leo. He is the person he was born to be. He is his own awesome self. I accept and adore him just as he is.

10.11.2012

Apps & Autism: Presuming & Expressing Competence

I do my best strive to presume, cultivate, and recognize Leo's competence. To give him opportunities to access information and entertainment. To always consider what is possible, what he could do, how he might thrive -- and not worry about whether we see any kind of  "return on investment." That is why we listen to a variety of music, that is why we listen to books in the car, that is why I chuckle with admiration whenever he punks or outwits me, that is why I always try to give him a few extra beats to process and then act on input.

And that is one of the reasons I love watching him use his iPad, because it lets him explore and demonstrate such competence, whether he's reorganizing icons so his most-used apps are all in the same folder, realizing he can find songs in iTunes via their album art, or practicing typing via finding his favorite videos on YouTube. All independently initiated activities. All evidence of awesomeness.

Leo playing Thidwick the Big Hearted Moose
Awesomeness evidence is also why I get so excited about apps that let Leo express his competence. This is why I have always been such a fan of Oceanhouse Media's OMBooks, especially their Dr. Seuss series -- Leo can explore beloved books however he likes, whether he prefers to have the books read to him automatically, or "read" them himself by touching on each word individually. I've written about this before, many times.

But the reason I appreciate Oceanhouse Media's work so much is that, even while producing a constant avalanche of apps -- they just released another Leo favorite,  Thidwick the Big-Hearted Moose --
Leo & Oceanhouse Media president Michel Kripalani
They also constantly strive to make their existing apps better and more useful. So now apps like Dr. Seuss's ABC, Green Eggs and Ham, and the Cat in the Hat allow users to record their own voiceover. Which means that Leo -- who knows nearly every Dr. Seuss book by heart -- will be motivated to practice reading out loud. He'll then have evidence of his competence, his abilities -- which I love seeing, even though I neither expect nor demand that evidence. He gets to feel proud and happy, and have fun doing what he loves.

We'll also be able to record favorite people reading his favorite books, so he can feel like his grandparents or uncles or aunties are still here, even when they're far away. We'll be able to share those recordings with friends and families who have the same apps. We could -- if we so chose, and assuming it would be within the boundaries of fair use -- play the Dr. Seuss audiobooks we've spent years listening to in the car, and record them right into the app, so Leo can have all of his Dr. Seuss worlds (Green Eggs & Ham and Dr. Seuss's ABC read by Jason Alexander! The Cat in the Hat read by Kelsey Grammer!) finally fold into each other for ultimate happiness. Because that's the kind of experience that motivates him. That's the kind of feature that keeps him pushing and learning. And allowing pushing and learning and demonstrating competence to happen -- keeping apps evolving to better serve kids like Leo -- is something for which both Leo and I are both profoundly grateful.

This is how all apps should be.

----

Disclosure: I requested and was gifted a copy of the Thidwick app. However, I am not affiliated with or compensated by Oceanhouse Media in any other way -- as always, I only write about apps I think really make a difference.

10.08.2012

Analysis of an Autism Parenting Fail

*Not* from the team photo shoot.
Yesterday was Leo's soccer team's photo day, but Leo ended up not participating in that photo shoot. Instead, we ended up leaving -- with me in tears, and Leo frantically upset. All due to bad decisions or not being observant enough on my part, and so all of which could all could have been avoided. Let me wallow in hindsight and tell you why.

1) Leo hasn't been sleeping well lately, often getting up at 3 AM then staying awake all day until his usual bedtime. This means both he and we (Seymour and I alternate hanging out with Leo in the mornings) are sleep-deprived and so not at our best, decision-making-wise. I should have put more thought into whether Leo would be able to tolerate an activity as chaotic and demanding as a team photo shoot.

2) Leo usually has a Sunday respite session with Therapist V, his former linebacker best buddy ever (V is strong enough to pick Leo up and sling our boy over his shoulders; Leo adores roughhousing), but yesterday their session was cancelled due to matters beyond anyone's control. So that made things harder for Leo as well -- the reliable, soothing, predictable structure of his Sunday was doubly compromised, first by V's absence, then by the photo shoot.

3) Putting on his uniform after already playing on Saturday and then not going to the usual soccer field (the shoot took place at a park nearby) was very confusing, and possibly a trigger for Leo. I should have taken more time, made more materials, explained better what the photo shoot was about, how it was going to be different from a game day. But, because I was tired, I didn't take the time to prepare him sufficiently. That is on me.

4) Anything scheduled during lunch is bad. Leo lives for lunch. Since he'd been up so long, he'd already had two breakfasts by the time we left for the photo shoot -- one breakfast rather late in the morning -- and I figured I could push Leo's lunch back accordingly. Bad idea. Lunch is at noon, no matter how many breakfasts a boy has had. That lack-of-lunch was the breaking point for Leo. I understand this now.

It was only after we'd already arrived at the park and Leo started making his displeasure known (slapping the picnic tables, yelling) that I realized my son was approaching a perfect storm of Hell No. But, as he's also maturing, I tried to encourage him to power through, to see if he could take a picture anyhow.

No. He was having none of it, and became increasingly vocally and physically agitated. I brought out various things that usually calm him -- iPad, fruit leathers, music -- but he was very much All Done.
Then one of the other parents then told him he needed to calm down and behave, which I get from an It Takes a Village perspective but which is of absolutely no use with mid-meltdown autistic kids like Leo. That's the point at which I lost it.

I already knew I'd failed Leo, was already berating myself for setting him up to fail in public -- but having a semi-stranger then judge him for being out of control was more than I could take (if you don't know me IRL, even small-scale in-person confrontations makes me cry, unless I'm righteously furious). I put on my sunglasses to cover my streaming eyes, told the coach we were leaving, and we left.

We hit In-N-Out on the way home, shared French fries and a shake, and went home. Leo changed his clothes and headed straight into our pool. And then happiness reigned. His day had normalized. He was in control. Lunch had happened. Things were as they should be.

I'm writing this down because I think it's important to show lessons learned in [autism] parenting, even if they make me look bad. Because even though I know and understand so much of what it takes to help Leo get through his day, I need to stay mindful of when and how things can be harder for him. Being off schedule in any way is confusing and stressful, as is sleep deprivation. And when I'm feeling stressed or overwhelmed, that is when I need to be extra-vigilant about ensuring that Leo has proper supports. He depends on me. As capable as he has become, and as well as he has been doing in so many stressful scenarios, it is my job to smooth the path in front of him. He deserves better than being dragged into a public meltdown.

He failed because I failed. And it made us both miserable. I wish I hadn't had to re-learn what I already know, and at my son's expense, but I hope our lesson can help other folks avoid such clusterfucks.

Leo, I love you, and I'm so sorry.

----

The only bright spot in the morning: I got to see and hug my dear friend MB, whom I've not seen in person for years. xo, Lady.

9.30.2012

My Son the Punk

This boy has reached a new milestone, that of punk.

When his older (new high schooler, obviously far cooler than we will ever be) sister decided to start calling me 'Mom' instead of 'Mommy,' and I protested and called in Leo for backup, asking him what my name is, did he say "Mommy"?

No, he replied, "Mom!," then laughed impishly and right in my face.

Punk.

When, after working with him for weeks on washing his hair using a hand-held shower head, and evaluating and fretting over whether it is reasonable to have him hold said shower head above his shoulders and move it all over  his head (crossing the midline, for those who get the OT term), I turn away from him for a moment after he's lathered his head, did he sit there complacently and wait for me to instigate the next step?

No, he took matters into his own hands, turned on the shower with the shower head still held in its bracket, and rinsed his hair his own damn way by standing up, moving his head, and turning his body. No OT, shower-head-raising, or midline-crossing needed.

Punk.

When iOS 6 eliminated his YouTube app and list of favorite videos, did he complain? Yes. But did he stop there? No. Now he's working on typing in the names of all his favorite videos, finding them, and reinstating them. Because he's awesome.

And not just a punk.

9.24.2012

Depression & Autism Parenting

When TPGA republished my BlogHer essay Autistic Lives: Not Less Valuable, about the murders of George Hodgins and Daniel Corby at the hands of their parents, one commenter criticized my lack of understanding for the parents' mental states, writing, This was not just a mother not willing to be as strong as you.

That comment was a bifold WTF to me. It dismissed the point of my essay (the horrifying dichotomy in our society's perception of parents who murder their children: with disabled children, it's considered understandable because of caregiver stress; with non-disabled children, it's considered unforgivable). But that commenter was also making a huge assumption about me.

Because I'm not strong. I'm lucky. I have a great husband, great family support, Leo goes to a great public school, he has great respite -- and I belong to great, neurodiverse autism communities both offline and on. Those communities are generous in sharing their experiences and helping me learn to both understand Leo better, and be a better parent to him. They are strong. I am not.


I'm actually prone to depression, and have been in a serious funk for months. If you know me, you might have noticed -- I'm usually a 78 RPM girl, but right now I'm set to 33 RPM. You might not have noticed if you're only used to dealing with my awkward or brusque sides, because those haven't changed. Or you might not have noticed unless you're waiting on a deliverable that requires me to synthesize multiple moving parts. You might not notice because I can rally in person if you're not expecting much in the way of coherent thinking or speaking. Small talk? Coffee? Beer? Retweets, Facebook posts? Sure. I just can't process much that's non-linear at the moment.

Thing is -- and I want to be clear on this -- my depression has very little to do with being an autism parent. Some of it has to do with parenting, most has to do with not being able to fix very, very broken matters: divorce affecting people and children I love, or seeing the best people in the world wrestle with cancer. There's nothing I can do about the divorces and disease. And I'm a fixer, a doer. Helping, fixing, signing off, pressing send, checking that box and moving on to the next task is what keeps me fulfilled and happy.

Not being able to fix things fucks me up -- there's no non-NSFW way to describe it. That is why, when Leo was first diagnosed with autism in 2003, and media portrayals of autism were all horrorshows and head banging and soulless eyes and doom, I went into the deepest depression of my life. With horrible insomnia (I usually sleep like the dead), and occasional pulling my car over because the rules of the road would cease making sense. I was depressed because I thought my son was broken, and I didn't know how to fix him.

And it took years, but I eventually realized that parenting is not about fixing. It's about supporting, accepting, finding best practices, and fighting for your kid's rights. It's about unconditional love. And it's about putting your kids first. About making other people see your kids -- and kids like them -- the way you do, the way every kid deserves. About accepting the changes kids bring to your life, even if they weren't what you expected.

I don't want any autism parent to have to go through the new diagnosis depression grind I did; that is why Thinking Person's Guide to Autism came into being. But even the most fabulous autism book in the world can't magically fix everything for parents as long as our society continues to portray autism as The Worst Possible Thing That Could Happen To Your Child. There's still the initial shock to get over, accepting that this Worst Possible Thing could happen to you. And then, hopefully, the epiphany that autism is not The Worst Possible Thing, after all. That you're all going to be OK, and that you're not alone.

But even parents who ramp up quickly to accepting their child as autistic still need time to adjust. Anyone does, when they go through a significant reality rearrangement. Depression and anxiety are understandable during that transition. And anyone who is depressed deserves help. The need to get help is all the more critical when the depressed person is a parent or caregiver.

For me, the tragedy sets in when those parents -- through isolation, lack of support, or through communities that reinforce negativity -- continue to believe that autism is The Worst Possible Thing, are never allowed to consider the joy so many autistic children bring to their families, never get to make contact with the many many amazing autistic adults whose stories and very existence defy mainstream negative autism stereotypes. I don't know what I'd do or where I'd be if Leo and I didn't both have supports and understanding and community. And I worry, a lot, about the children and families who don't have what we have. That is why I do the work I do.

Anyhow. I'm now a veteran autism parent, and I'm lucky. I don't worry over autism as a nasty boogeyman that I can't fix, or could fix if I tried hard enough (a quixotic and demeaning approach at best) -- I worry about my beautiful son, who is autistic. I worry about what he needs from me, and whether I'm a good enough parent, a strong enough person to provide it. Mostly I just do my best to support him.

It's not always easy. Sometimes it sucks. Like right now, when Leo can't be in the same room as his little sister, because he's in an aggressive phase, and she's a shrieker. But you have to understand that  my resulting, heart-cleaving sorrow over Leo's and Mali's standoff is no different than when Leo's sisters are locked in an impenetrable yelling cycle. My sorrow comes from the helplessness of not being able to instantly make everything better for my children, these three people who were ripped from my soul and whose unhappiness has the power to destroy that soul entirely.

And then there's those other areas of unfixability. I will say that I have learned a lot this year, about realistic expectations, about the folly of projecting my own mindset and values onto others. Narcissists don't want to hear that their ongoing choices are profoundly disastrous and that the only role they currently hold in their extended family is that of emotional wrecking ball. If a sociopath gets off on manipulating people, then letting them know I'm angry at them is exactly what they crave. If a person who has been indulged and never held accountable int their entire life is still not able to fathom why other people don't just give them what they want, all the time, why is that a surprise to me? I guess I can't get over the way those scenarios are affecting the involved kids. Much the way I can't get over anyone ever thinking it would be understandable to murder an autistic child.

I'm going to be fine, I've waited out periods like this before. When my kids aren't trying to take each other out, they are my joy and solace, as is my husband. My friends and loved ones' cancer treatments have all been successful, so far, though they're not over. The divorce scenarios will either get better or they won't -- they're out of my hands, all I can do is support the parties involved however they'll let me, and give thanks for any positive steps. And I have my techniques for keeping my nose above water -- I do a crossword puzzle every morning to keep my brain from rotting out entirely; I listen to our local, reinstated classical music station in the car; I make myself checklists of tasks that result in physical manifestations of done-ness, and allow myself to attack them in phases if need be. It all helps.

I'm not strong. But I'll get by. Sometimes, that's all any parent can do.

Leo's iOS6 Upgrade: A Bumpy Ride

If you haven't upgraded to iOS6, and you or your child are YouTube fans, then let me warn you: the native YouTube app is all gone in iOS6 for iDevices.

This is a huge deal for Leo. HUGE. He is pissed. His page of Favorite Videos? Also all gone. Irretrievable, because his pre-iOS6 iPad native YouTube app had let him favorite his apps without signing into an account. That data, that selection of videos, was only recorded in the app itself. So, *poof*

Yes, we can still access videos in Safari, or by using the (much crappier, iPhone-not-iPad-native official YouTube app). That's not the issue. Leo (and I) are mad because -- once again -- Leo's custom content has been erased from his iPad with no warning, due to an upgrade.

I suppose I should have been more patient, should have read the fine print, should have waited a few days to upgrade, to see just what kind of hiccups the autism and special needs community would start warning each other about. But I didn't, and while I read plenty of information about iOS6, somehow I missed the YouTube deletion news -- and now Leo's favorite videos have vaporized. And it sucks. Because in YouTube's own app, you can only access Favorites once you've signed into an account, which makes Leo doubly dependent on other people -- someone to set up the account, and someone to refile & retag all his favorite videos.

I hope can relocate and properly curate all those videos, because Leo sure as hell knows exactly which ones they are -- he spent months selecting them. And if they aren't all the right videos, in the right order, I'm going to hear about it. For a very long time.

Mostly I just hate anything that suddently takes away Leo's independence and makes him dependent again, even if it's temporary. It's disorienting, plus he's already dependent on other people for so much in his life -- a fact that is often very frustrating for him.

Probably this is why I'm leery of Guided Access, even though many folk (especially therapists and teachers) are excited about its ability to restrict users to a single app until a gatekeeper person restores full access. I understand that, because of that restriction, Guided Access is eroding arguments about iPads not being dedicated AAC devices, and may make it easier for those who can afford $499 iPads but not $7000 dedicated AAC devices to get insurance or school or other external funding. I just hope the gatekeepers will be mindful.

If you want to see how Guided Access works, here's a video by GeekSLP:



Have you upgraded to iOS6? Why or why not? What do you think?

9.22.2012

Autism & Sharing Social Skills Insights

I always though parenting three kids would be interesting, but I never thought it would be so “May you live in interesting times” interesting.  But anyone who’s ever taken on this parenting gig knows that  being a mom to three kids with entirely different social skills profiles -- one intensely thoughtful teen girl, one exuberantly autistic tween boy, and one explosively extroverted seven-year-old girl -- means boredom is … not an issue. This gig is fun! And maddening. And so, so rewarding. 

It also provides constant opportunities to learn, to look back on what we’ve done and experienced; to think about what went right -- and what went not-so-right. To share those experiences with other parents who might need advice, or to learn from other people -- not just parents -- who might have advice to offer themselves.

That’s why I’ve been writing online about parenting and autism since 2003 here at www.squidalicious.com, as BlogHer’s contributing editor for parenting children with special needs since 2009, and as co-founder and senior editor of Thinking Person’s Guide to Autism since 2010. Sometimes to vent, mostly to share information, Borg-style -- though the collective and hive mind that is the Internet.

Over those years and through many posts -- and I just passed 2,500 entries on this site, if you can believe it -- my writing has been autism-focused, or autism-sibling focused, but not always. I’m too much of a distractible geek, and my life and kids are too interested and complicated, to keep everything tuned to a single channel.



This. Is. Neurodiversity.
Lately I've been interested in how iPads can foster social skills both formally & informally (including investigating apps for all ages & abilities, for their stated purposes and beyond), how we can learn from autistic adults able to articulate their past and current social experiences, how to handle exchanges between kids with differing quirky behaviors when one kid finds the other kid’s quirks bothersome, how to teach others to not talk about our children and their disabilities as though those children are not present, how to empower our kids to stand up for themselves … the list is a long one, and this is just a sampling. I'd enjoy hearing your perspectives as well.

Underlying everything I talk about, however – the root of all social understanding, and what I try to keep in mind and also teach my kids to understand -- is the idea that Behavior is Communication. This seems like a simple concept, and it is fairly logical – but it takes effort, because we are taught to pay attention to what people say, rather than consider what their behavior may be saying. 

But understanding how behavior influences communication makes fruitful social interactions so much easier. I can’t really expect my son Leo, who like so many autistics often struggles to produce spoken language, to have a successful spoken social exchange if his lunch is overdue -- he’ll be both hungry and off-routine. This means the energy I want him to use for social interactions is instead getting transformed into anxiety over his empty belly and the broken social contract regarding the time at which that belly gets filled.  I can’t expect Leo to simply do what I say at that point, and tell me what he wants, if his behavior is indicating distress so significant it undermines his ability to speak.

 It's unreasonable for me to insist Leo tell me what he needs in such scenarios, and I need to both understand that, and know how to help an agitated autistic boy return to a calmer place. Maybe, then, we can resume exploring supporting his social skills. 

I realize my writing on this site has been spotty of late. I'm going to try to be better about that. In the meantime, I want to get to know more about you, or your kids if you have them. And I want you to understand what I’ve learned from thirteen years of parenting mine.

9.19.2012

Toca Band: Best Music App for Leo Ever

We're a family of Toca Boca fans, which is no secret -- I'm pretty sure we own all their apps, and we jump up and down every time a new one comes out. So: Yay! Toca Band arrives today!

Leo has always loved music apps, but this one is special, this is the one he's been waiting for -- as he can show you himself in the video below, which shows him diving right in, seconds after opening Toca Band for the very first time. Watch him go:


Do you see? Do you see how easy-to-use -- and fun -- and open-ended -- and goofy -- and creative this app is? Yet still structured enough for Leo to feel comfortable exploring? He doesn't need to read; he doesn't need to understand the characters' scat-style, often word-free "singing;" he doesn't need to stop and figure out how to use anything. The swipe-based selection menu at the bottom of the screen is easy for him to navigate, and to pluck characters from and then plonk on stage in different musical combinations. He enjoyed checking out all the different sounds/beats/loops, then popping the characters on the center stage star, exploring their individual percussive or vocal or musical characteristics and how they meshed with what was going on on the main stage -- and then popping right back to the main screen.

This this this. This is how apps should be designed. If you ever contemplate creating apps to delight and entertain kids -- all kids, including autistic kids like Leo -- then you need to take a long, hard, detailed look at apps like Toca Band, and start trying to understand why and how they work.

Leo's little sister Mali was waiting behind her brother the entire time he was playing the new app, desperate to have her own turn. And when she got it, she immediately started experimenting with innumerable musical combinations on the main stage, running over and asking us to listen to each one -- and they were fun to listen to, she was able to get really creative. Seeing what she and Leo could do made me itch to dive in, too. In fact the only reason I'm not playing with Toca Band right now is because I'm typing. The only reason.

The Toca Band "Stage." You can swipe the characters below to select different ones.
Placing a character on the center stage star opens up their own screen
-- with more musical options.
The only caveat I'd give is that if your kids push back against requests to turn their iPad's volume down (ahem, my progeny), then this app is yet another argument for Apple to enable a global iDevice volume limiter. Especially if your child gets really explorey with multiple musicians and center stage percussion characters, because Toca Band makes achieving dissonance and cacophony just as simple as harmony and counterpoint. All valid musical expressions! But not ones a precoccupied parent like me is going to want to hear at top volume for hours on end.

As device volume limit is not within the developer's control, I have no problem stating that Toca Band is a fabulous app. It is a Shining Example app. It is an app that lets my son be smart and creative. It is an app Leo adored on sight.

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Disclosure: Toca Boca sent me a preview code for Toca Band. But, as always (and since Leo's iPad has 450+ apps) I only write about apps that really stand out.

9.14.2012

Oh Yeah: 1400 Mile Autism Family Road Trip in 60 Hours!

Can a family like ours roadtrip from San Francisco to Portland and back again in 60 hours? Of course. But should we drive 1400 miles in under three days? Under the right circumstances -- and for the right people -- absolutely.

Traveling as a family hasn't always been reasonable for us. We had a long stretch in which Leo didn't do more than the occasional day trip, so unimpressed was he with the demands of going off-routine. But he's grown, he's matured, and he's now become the most patient and intrepid traveler of our group, enjoying the adventure of seeing new scenery roll by.

And SF to PDX, that is a scenic drive. Especially on Labor Day Weekend, with some of the best weather we've seen all year. And especially if you take the Redwoods route along 101.  Because then you can drive through trees!


The drive-through tree at Myer's Flat may look shredded, but I assure you it is very much alive.


This is what the inside of the tree looked like through our sunroof. You can see some of its greenery out the top.


And this is what the drive-through tree looked like through our window! You can't necessarily tell in the photo, but Leo is laughing his ass off at seeing the inside of a tree through the car window. I, on the other hand, am not laughing because the clearance on either side was less than 3 inches (finally, my background maneuvering big pickup trucks over tricky overgrown Oregon logging roads paid off!).


We enjoyed the various redwood structures, including playhouses built inside giant stumps.



But by far my favorite redwood activity is wandering among the giants themselves. The kids warmed our hearts with comments about being on the forest moon of Endor. And we saw two families much like ours who appreciated big open path-based spaces for wandering and wondering.


We also marveled at the undersides of fallen stumps, so those recent like sea creature firework explosions.


They're just so damn big! The giant below was nearly 400 feet tall when it fell in the '90s.


Most every part of California north of Healdsburg made us want to stop and get to know it better, more so as an acquaintance recently took his family-like-ours camping along the very same coast, and highly recommended it. We need to come back, spend a week or so -- or more -- out in the redwoods and the isolated coastal areas where a bit of happy whooping and the occasional yowl of NO from our boy won't bother other campers. But we had to get to Roseburg, OR by the first night's end. So, onward we drove. Though we did celebrate hitting the state border.


We went to Portland to celebrate a friend's milestone. And we knew they would be celebrating with a rambunctious, kid-filled party. So we asked around if anyone would want to come with us to help make sure Leo's needs were met. And guess who volunteered? My wonderful co-editor at TPGA, Kassiane. She and Leo (and the whole family) got on just ... so well. Makes me sniff tearfully, in thinking how rare and precious it is for us to hang with folks where everything (geekitude and autism) is instantly grokked. Do you know how many people will keep talking with Mali about her favorite imaginary precious metal/gem cupcakes and their variety of possible toppings after the first five minutes? Damn few.


I think Leo & Kassiane liked each other, too. (Thanks so much for being awesome, K.)


Our hosts, some of our very most favorite people on the whole planet, threw a hell of a party. It aches to think how rarely we get to see them, how much we love them -- that is why the trip needed to happen. And their house was so amazing to me -- it's such an adult's house. Everything tidy, maintained, and lovingly geekified (they're both scientists). Their kid's room overflowing with Lego, books, and specimens (he's his parents' child), but ordered. Everything so distanced from Martha Stewart (bah) but so close to my mind's eye's 'real' house. Good to have goals, good to see people living the domestic dream. (I have been pulling the slo-mo version of the Augean stables on our house ever since.)

The kids wanted to stay forever, in that house of bunnies and turtles and bonsai trees and jumpy pool slides and a tree swing. I did too. Unfortunately Leo fell off the swing and scraped the side of his face. Since it's hard for him to leave scabs alone, it's still healing. But we've found he picks it less if we stop telling him not to pick at it, poor guy. And I am once again grateful that Leo is a healthy, not-terribly-accident-prone kid, because I don't like thinking about the decisions we'd encounter should he be unable to comply with treatment and recovery from a serious injury or illness.


We turned around and headed back south right after the party, so we wouldn't have to do PDX -> SF in a single day. We stayed in Eugene, which always seems such a pleasant place to me. Our hotel was right alongside the Willamette's inland delta, which would normally have us all out birding -- but alas, our breakneck schedule. NEXT TIME.

Leo is a fan of hotels, too. And newly invested in piloting roller bags, which is A-OK with me. One of his former OTs remarked on Facebook that this is a good way to provide proprioceptive input, so hey.


The schedule stomped the kids pretty hard, good sports though they were.


We took the (mostly boring) I-5 route back, for expediency purposes. It was good to say hi to Mt. Shasta up close after so many years, and we chuckled at Ashland -- such a doppleganger for Sebastopol (but all we had to do to find a good coffee & sandwich shop was to stop randomly along the main drag, so, not complaining).

When things got truly flat and dull south of Redding, Iz livened matters up by defying orders and letting Mali have her first dose of caffeine. Sigh. Thankfully our youngest put her energy into READING REALLY FAST instead of activities requiring social reciprocity, as we were all well and truly burnt by then.


Does this mean our trip was easy? No. This was an exhilarating but exhausting blue moon-worthy excursion (note blue moon on the eve of our trip). My husband is a saint for coming along -- he does not share my fondness for road trips of intensest intensity, but he couldn't pass up the chance to see our friends, or the Northern California redwood & coastal scenery. 

We also had the complication that Leo is currently In a Mood regarding his little sister, and cannot sit next to her in the car. So Leo got the shotgun seat, while the non-driving parent sat in the back. With this accommodation, and as long as we were mindful to keep the two kids non-adjacent at all times, things went smoothly.

Would I do it again, given the wonderful scenery and friends (and family)? Oh yes. Gratefully.

9.10.2012

Reluctant Soccer

Can you tell which player is Mali? Note that the ball is in active play.


This is her as goalie. Sigh. I'm not sure soccer is her thing. She says she loves it, but this is the age (3rd grade) in which silliness stops being tolerated by teammates and coaches and other parents, even if the purveyor of the silliness can't help but put on a performance whenever possible, and finds standing around punctuated with bursts of confusing action less preferable than said performing.


But, just today she got to perform in earnest, when she tried out for her school's play. She was required to sing a one-minute song, and act out a one-minute monologue. For the former, she chose Make 'Em Laugh from Singin' in the Rain; for the latter, Gollum's argument with himself from LOTR (she was enthusiastic but slightly tone deaf for the former, suitably creepy for the latter). The theater company is a serious one, but they also accept all actors who audition. Mali attended their theater camp this summer, and they were able to channel and guide her energy with good results. 

I'm hoping it will be a better fit than soccer. I hope nothing soul-scarring happens to her in soccer.

8.28.2012

Back to School High

Iz is in high school. A rather awesome public high school, if you must know. (It was chosen for its combined excellence and diversity to kick off Education Secretary Arne Duncan's upcoming Education Drives America bus tour.)

I can't believe it either. She was in preschool when I started this blog in 2003. So those of you parenting tiny people right now, hold them tight, and take lots of pictures + copious notes. Parenting mental fog plays tricks with how we track time, and if you don't pay attention, that scrumptious tiny person will disappear and be replaced with a great big person -- and if you ever want to spend time with the mini version again, you'll need your records to reproduce them.

That doesn't mean I want tiny Iz back, because -- idiopathic, random, yet stereotypical teenage bershon behavior aside -- she is still the warm-hearted, thoughtful, intense, amazing kid she always has been. But just so big! She's almost as tall as me. She has ... distinct ideas about how to dress, what to read and listen to and watch, and they don't always sync with our nerd family hive mind. Which is fair. But. But.

Leo also restarted school, this year in 6th grade. He was also tiny -- not even three years old! -- when this site started, now he's nearly as tall as me when we sit next to each other on the couch. I think Leo was pleased to have school resume after a one-month break, as much as he enjoyed our constant excursioning and hiking and visits to CalAcademy, plus a week at camp. School is consistent, school is reliable, school means constant 1:1 attention and extra-close attention to requests and needs. He was generally in a good mood this summer, but has been even more cheerful since his school van resumed picking him up every morning.

His school also remains the best possible place for Leo -- the staff so responsive and intuitive, so firmly behind our boy, in terms of believing in him and understanding what he needs to succeed and keep learning. I just wish that it didn't have  ongoing funding worries, like so many CA schools and sped programs.

I also remember when school for Leo was ... not so good. So we've been running a back-to-school series at Thinking Person's Guide to Autism, and I recommend reading the last two entries: Autism & Back to School: What Do You Wish You Knew? with advice from several TPGA contributors from parent and student perspectives, and Autistic Students Need Autistic Role Models, on how autistic self-advocate Karla Fisher helped get an autistic student out of crisis so he could succeed in school. Karla has excellent points about how just about any program for autistic students can benefit from autistic insights.

Mali was the last of our three to be summoned back to class. Third grade! She didn't even exist when this site started. But I am constantly grateful she's here, even though her on-the-fly parenting needs suck up my energy disproportionately (anyone who's hung out with her in the last few months can attest to her OMG social supernova factor).

We've decided to keep her in Spanish immersion, even though Iz's former GATE school offered her a spot. Bilingualism and biliteracy are huge gifts, plus I've observed Iz's friends who completed the program through the years -- they're certainly not at an educational disadvantage compared to Iz's GATE classmates, quite the opposite in some cases. And Mali seems to grasp not just the opportunities but the fun of being bilingual. It's a good choice, for her.

Back to school is a good choice for me, too. My brain fell out of my head the moment classes ended in June.  I've only attended to items that were on fire for the most part, in the interim. So it's good for us all to be back. And I hope those of you also in the thick of back-to-school are feeling the goodness.

8.21.2012

Two-Timer

Leo's dad has an iPad now, too. Which means that Leo can completely control one of his favorite scenarios, which is to have a preferred video and a preferred app going, simultaneously. Happy boy. (Talented boy.)

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We've been busier than busy this summer, this year, for just about ever. Hence the lack of documentation. But the kids start rolling back into school tomorrow. Expect tears, of regret and of relief.

7.31.2012

For New Autism Parents: On Gratitude

Leo's passed the eleven and a half years mark. I feel like I'm finally hitting my stride as an autism parent, in terms of accepting Leo on his own terms, and not giving a damn about the imaginary "easier" alternate reality society thinks I'm supposed to pine after. This means I think a lot about the information and attitudes I'd have wanted to jack, Neuromancer-style, straight into my brain eight years ago so I could instantly be the parent Leo needed me to be.

And that's silly -- neural enhancements aside -- because instant downloads do not equal instant attitude adjustments. There's often no substitute for experience constructed out of progressive, natural epiphanies. Still, that experience can be altered dramatically by external factors, like consistent exposure to positive attitudes and helpful perspectives; they shape our final outlook as parents and as people. So I'm going to dole out some perspective, and attitude.

I think a lot about gratitude. Appreciating what I have -- and I have a lot, as does autism parent Marie Myung-Ok Lee. Appreciating Leo and his sisters for who they are. Thinking about what we do have, what we get to do (see local hike photos below), and recognizing the poisonous futility of dwelling on what we don't.

Leo does love benches along the trail
It's understandable for people new to the disability community to dwell on not-having. Our society stigmatizes disability so vehemently that it's often difficult to see this new scenario through any lens other than that of exclusion and unfairness. Until you step back and realize that all of life is not-having, if you make the choice to view it that way.

Early evening summer hike
A frivolous example: I can't take Mali to this weekend's Mary Poppins singalong because Seymour will be out of town, Leo wouldn't like the decibel level or chaos, and I can't justify a babysitter (Iz is hitting the back country trails at high Sierra camp for two weeks). I'm bummed, but I also accept that parenting in general means not doing a lot of stuff I'd rather do. Missing a movie is no different from the hours I spend not-having experiences and options because of the choice I made and time I put into to being a parent. Yet I'm encouraged to chuckle over and commiserate about typical parenting drudgery, while anything having to do with parenting Leo is perceived as either noble or tragic. Which is unfair and uninformed, as what we do for Leo is simply what we do, because of what he wants and needs. Just like what we do for his sisters.

Manzanita berries
Is parenting Leo different than parenting his sisters? Sure. Are parts really damn hard? Sure. Is parenting him harder than the unfixabilities of raising a neurotypical child who cannot retain friends, or who gets pregnant at fourteen, or who is an ungrateful, entitled, unapologetic, dismissive jerk? Now that I've been doing this for a while and we have defined our own happiness, I don't think so. I look into my beaming, affectionate son's eyes -- they are gorgeous -- and wonder, why is anyone supposed feel sorry for the two of us, in our contented companionship? I'm grateful that this beautiful boy is my son.

Poison oak can be beautiful, too
I suspect some of the pity we get ladled with has to do with communication. Leo's is atypical,  speaking and articulating are a challenge. But as I watch multiple marriages flame out around us -- many with little thought for the children involved, except as extortion crowbars, and all sans significant quality-of-life issues -- I have to wonder: what exactly does the ability to communicate typically guarantee? Especially when listening is not prized equally? Leo listens well. He's not much for abstract concepts, but he's present, and he understands, and he acts directly on what he hears. He always tries to get it right. Who should you feel sorry for, again?

Found structures along the trail

I wish I'd known how important gratitude is, earlier. I wish I'd had someone shake me by the shoulders and to tell me to focus on my giggly, sweet Leo and what he can do, on helping him do more, on putting my energies into on helping him build his best possible present and future. On searching out role models in both the parenting (what it's like to be Leo's mom) and autistic (what it's like to be Leo himself) communities, all of whom understand which parts of our lives are genuinely challenging, and which parts are a matter of what Leo's godfather Michael calls "attitude recalibration."

210° panorama from the hike's hilltop. Embiggening encouraged.
We've been fortunate enough to find those communities, and for that and for so much in our lucky, lucky life -- I am grateful.
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