The Intelligent Way Leo Hauls Trash Cans

Hauling trash cans at our place is a bit of a pain. The cans are large and heavy, and they need to roll down a long, steep driveway. Most smaller people haul them they way the girls are doing in this picture -- backwards.

Adults, however, turn around, push their can down to the position of Mali's can, and hold and pull it behind them as they walk forward down the driveway. All of this is fascinating to you, I'm sure. But it's important background information.

Because yesterday Leo helped me haul the cans down the driveway. And instead of wrestling with his can, trying to push it down the driveway, or defaulting to the girls' backward-pulling walk, he stopped for a moment, carefully observed the way I had positioned my own can, and then imitated my pulling technique exactly. I did not give him any instructions or prompts -- he did this all on his own.

You could almost see the intelligence crackling and sparking around his head. He was thinking, and thinking hard, and problem solving, and doing it independently. It was a small moment, but it struck me deeply. It's the kind of demonstration of ability that tends to get overlooked, precisely because it was not communication-based. And it makes me wonder exactly how much of an iceberg Leo is -- what we can see of his ability, as opposed to what we can't see. And how frustrating that must be to him.

It's one of the reasons he's in the middle of a full AAC evaluation -- to ensure that he has the opportunity to demonstrate what he knows, and what he can do, and tell us about it to the best of his abilities. So he can tell us what he wants, how he feels -- so he can communicate with us, and everyone else, on his terms. To the fullest extent of his terms.

I'm not banking on an Ido-like communication breakthrough -- though that would be wonderful (for Leo most of all) -- because Leo is Leo, and should not be held to anyone else's standards. But we owe it to him to find out exactly what those standards are. I hope we don't let him down.

Feliz 2014

This video is how I want to remember 2013. All of our family, together with extended family, delighting in life and each other's company. Our family had so many amazing times in 2013, and had so much to be grateful for -- not the least of which was the people in our lives, whether connected by blood or choice. Tardily wishing you a happy 2014.

Please Apple Please Apple Please Please Please

Waiting for lunch at Duarte's

Obviously, we are iPad fans. And I enjoy talking about how helpful iPads have been for Leo, and how they can help Autistic people of different ages & abilities.

However. Just as many standard iPad features (e.g., large touch screens) are surprisingly useful for kids with disabilities -- and that's not even getting into Apple's extensive built in accessibility options -- others features could still use a bit of tweaking.

So here's one option I'd like to see: turning off deleting videos in iTunes. The compulsiveness that accompanies Leo’s autism means he cannot stop himself from systematically deleting every last one of his favorite iTunes videos. He does this because deleting items on the iPad is fun! But then, crap, all the videos are gone. This is ... bad.

We can restore all purchased videos, of course, but it takes time, and sometimes it would make a world of difference to him if his favorite videos were always there when he needs comfort and familiarity and control (iTunes allow him to skip straight to and loop his favorite scenes) to get through a difficult patch. I do not think he would be upset about not being able to delete videos, he adjusted quite quickly to not being able to delete apps once that function was enabled. But if the option to delete is there, oh yes, he's going to take it.

So I do wish Apple would create an option to turn off deleting iTunes items, just as we can turn off deleting apps, because I doubt Leo is the only helplessly self-thwarting video-loving autistic iPad user in town.

Which iPad features do you wish were tweaked or changed for an even better user experience?

Mali Asked Me What "Retard" Means

...because one of her friends at school uses "retard" as a casual pejorative. I suspect she already knew; she is nine after all. But this is an age where one's big kid ability to take in and process information is often at odds with one's little kid assumptions that the world is entirely a good, safe, and happy place. So here is what I told her:

'Retard' is a word used to make fun of people like your brother, people with intellectual disabilities. It is an awful word, and people who know better should not use it.

She asked me what to say to her friend, and I told her she could try the following:

1) 'Retard' makes fun of people like my brother.
2) So it hurts my feelings when you use that word.
3) So please do not use that word.

She'll be home in a few hours. We'll see how it went. And I think I'll have her watch the Not Acceptable PSA, even though it will further puncture her safe happy assumptions bubble.

What would you have said?

Nine, for the Last Time

This little girl turned nine while we were in Mexico last week, surrounded by family plus a chorus of nice waiters who then got attack "abrazos por todos."

 

This little boy turned nine at a bouncy house place near his home, surrounded by family and friends. We sang him "happy birthday" for the rest of the week by his request.

This little girl turned nine in Cambodia, with just her mother and a chorus of clacking crabs on the dark beach nearby.

And this mother is wistful about her last year of having a little kid. I was reflective during my entire ninth year, mulling over the gravity of transitioning from single to double digits, and wonder if Mali feels the same way.

And I think we were able to give all three of our kids happy and memorable ninth birthdays. The mostly atrophied but still functioning, finger-wagging Catholic part of me hopes they feel as lucky to have such fun celebrations as I feel to be their mom. The rest of me just hopes they remember their ninth birthdays as pretty good days.

Babymouse: The App!!

App-loving Babymouse fans, your wait is over: Everyone's favorite slightly neurotic rodent is now available to play, via both iTunes and Google Play. Let iDevices and Android tablets alike rejoice. Even better, the app is free!

And really good, according to my own wee Babymouse fan. The app uses excerpts from the Babymouse graphic novels as the basis for some seriously  fun word matching, guessing, and spelling. Or, according to the app summary:

Playing the Android version on our Xoom

"Pop the Pic World Puzzle Game based on the popular Babymouse kids comic book series. Reveal the comic book pictures piece by piece and try to guess the word."

And did I mention the Free part? This is not an introductory dealie, the app will stay free. So if you know someone who has read all the Babymouse books and craves more, consider this an Expanded Universe option, and an opportunity to make that fan's day. But the app is a kick even for those who have somehow never crossed over into the wonderful world of Babymouse.

But don't take my word (heh) for it. Here what a dedicated fan (my daughter, who has played both the iPad and Android versions) has to say:

This Is Autism, on Leo's Terms

Hiking!
With somewhat reluctant sister in background

Today is the This Is Autism Flashblog event, a positivity reframing response to Autism Speak's Suzanne Wright's attempt to frame autism as a national catastrophe.

If you know or read me,  you know I have Big Thoughts on many aspects of autism & autism parenting.  But when it comes to defining autism? That's a highly individualized experience -- which is one reason so many people were outraged by Suzanne Wright's attempt to hijack it.

It's also not my experience. I do not have an autism diagnosis. My son does. So I'll let him show you it's like to be him, to be an intrinsically happy Autistic person. It's not always easy, especially the communication. But he's working on communicating, we're working on that with him, and for the most part he's got a whole lot of joy going on.

For my part, I'm in love with my son, and grateful to be his mother.

 

Video description: Seven mostly very peaceful minutes of Leo hiking in the woods and grasslands. He has occasional Autistic tics and stims. About five minutes in he uses scripted language "We're not going to go back to the car" to let me know that he's not happy about the trail going uphill. I reassure him that he's great, and he uses echolalia "you're great" to acknowledge what I said. At the end he needs me to give him my full attention, and I turn off the camera.

This Dude Will Be Thirteen Tomorrow

This cute little dude will be thirteen tomorrow. To quote Yul Brynner: "How how how?" Those of you who have been reading along over the years -- please tell me you share at least some of my feeling of being hit over the head by time?

We are celebrating with the usual jumpy birthday party with friends, because that is what Leo likes. There will be cupcakes and pizza for the same reason.

We will also give him a few presents. But mostly we are using this milestone to acknowledge that our boy is become a teenage dude, and no longer a little kid. So while one of his presents is a Monsters University DVD, another is a room makeover -- working with him, asking him about taking down the stamper paint 1-2-3 posters he made years ago (he said yes) and putting up a Star Tours poster instead. Removing the colored, preschool-style toy bins and replacing them with clean white shelves for relocating some of those toys. Replacing cutesy puppy sheets with cozy red fleece ones.

Nothing is going away permanently, not at first. We'll store most of his kiddie stuff in the garage for a while, in case he asks for it. Because he does that, sometimes, and knowing things are retrievable is reassuring way for him to manage transitions. Pluse these changes are hard for all of us, especially sentimental mothers who wish their kids could stay kids just a little longer.

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If you'd like to honor Leo's 13th birthday, his school would be most grateful for a donation of any size. Just click through to the school site and click the Donate button. Thank you.

Next Time You're Shopping in Accra...

I really must write more about our trip to Ghana. You know, the one we took in June. One thing I will say: The next time you find yourself in Accra and in need of beautiful clothing and handicrafts, go to the Accra Arts Center and look for these two fine gentlemen:

Asamoah Jones sells excellent clothing, with a wide range of options for men, women, and children.  His shop number is #83, near the center of the main building.

Ras Emma has his own large stall behind the main building, and sells wooden and other handicrafts. It was through him that we acquired a beautiful djembe (drum) and kalimba (thumb piano). His shop is #159.

My daughter is already asking when we can go back. Soon, I hope. Though the fact that we were able to go at all makes the experience seem like a dream.

Advice Needed: How to Tell a Young Adult They're Adopted

Yesterday my birth son's family contacted me and confirmed that he doesn't know he is adopted. They really don't want to tell him. The reasons are long, complicated -- and private.

And wrong no matter what, in my opinion. He deserves to know who he is. And I do not, as a friend of mine wrote, want to be complicit in his being lied to about his identity. As I told his family, genetic tests are getting cheaper all the time, and cataloguing one's own genetic makeup is very popular with college students. What if he orders one on his own, finds out on his own that his family kept his truth from him? I'm certain that would be far more devastating than learning of his adoption from his family.

They need to tell him. I'm not going to do it. I have no interest in being the person who leaks his secret identity. That responsibility lies with his family, the people who did the work of raising him, the people who have been loving him in person for 20+ years. I have no, never had any intention of, trying to make them look bad, taking their place, or trying to insinuate myself, because any of those actions are gross as well as ethically messed up.

But this was also never a closed adoption. The fact that I have been respectful and kept my distance does not mean I don't care, don't want him to know he has a whole other story that he can access any time he likes, plus a motherlode of geeks just across the Bay who would welcome him with open arms if he chose to expand (not replace, expand) his family. He deserves the option to make the choice to know us -- or not. If he just wants info, just wants to know more about his native French speaking great-grandfather or talk about the genetics of autism, I'm OK with that.

I'm worried that his parents think adoption is shameful, that knowing he is adopted would make him think they love him less in some way, that there's something wrong with him. But how could he think that, when they've been loving and supporting him his entire life, as much as any child has ever been loved and supported? He is a wanted, cherished son who was born when I was an immature young woman who knew that the best thing for him would be to live with parents who were ready and able to be his family in a way I absolutely was not. He needs to be told. And soon, before he finds out on his own.

Thing is, next steps are unclear -- which is why I'm asking you for advice, dear Interwebs. What resources should I send to his family, to help them understand why their denying his being adopted is a really, really bad idea that will ultimately cause more harm than good?

What would you do?

Six months pregnant and wearing a hat I'd
made myself. Go 1990 go.

Letting Our Autistic Kids Have Chill Time

One message I think autism parents don't hear enough: it is so important to make time and space for our autistic kids to be themselves. To do what they like. To be completely relaxed and unstressed. To not have other people making demands on them (even to help them), to not be figuring out how to ask people for help so they can do what they want to do. Legitimate, unfettered chill time.

We try to make that time available to Leo, as much as we can: going to the beach, hiking, trampolining, swimming, all things he loves. But sometimes he just wants to sit down, sing, and pound on a damn ball. So whenever he wants to and it's also possible, he gets to do just that.

He's a happier kid and we're a happier family-of-his when he gets time to be his own happy autistic self. Being Autistic and mostly non-speaking in a world built for non-Autistics means Leo spends a disproportionate amount of his time negotiating, problem-solving, or figuring out how to communicate his needs -- and not always successfully, despite the best efforts of his family, teachers, and friends. And that doesn't include sensory assaults from bickering siblings, clothing, or loud noises. That doesn't include all the times we've misunderstood his needs without knowing we misunderstood them, because of the communication gap -- again, despite our best efforts. His life can be fairly frustrating and anxiety-ridden. He so, so, so needs time to relax and do what he likes.

This is why I think autism parents need to be extra careful to find as many ways to understand our kids as we can. We also need to pick our battles. I almost threw my computer across the room this morning in reading an autism parent's prideful recollection of how she spent hours torturing her teenage autistic daughter, demanding the daughter wear a specific item of clothing and insisting that she (the parent) was not going to "give in to autism."

The daughter did her best, used her best words, tried repeatedly to express her needs -- and ended up in tears because of a mother who would rather impose her will and "beat autism" than understand why her daughter didn't want to wear the item. Maybe the clothing was itchy, maybe the daughter's thermostat worked differently than her mother's, maybe her personal sense of style was being violated -- who knows? Certainly not her mother, who recounted her daughter's distress and attempt to negotiate at length, while crowing about not "giving in" for her daughter's own good. I am not naming names because this parent is self-righteousness incarnate as well as an Autistic-hating repeat offender and she doesn't deserve your attention. But it's important to spread the message that "my way or the highway" incidents like this are absolutely the wrong way to approach conflicts with an autistic child.

It's not easy to be Autistic, and it's not easy to be Leo, even though in general he's the happiest and most affectionate boy I know. So, I beg you, Please don't forget how hard it is to be an atypically-communicating person like my son. Please share the message that Autistic people of all ages deserve extra time and effort to ensure that you're understanding their needs properly, even if what they're doing doesn't make sense to you, even if you think you know better, even if you think it's for their own good.

And, if you have the time, please help share the message that happy stimming is a reasonable and healthy thing.