My April Fool

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There are many people who advocate for autism awareness and acceptance better than I.

As another April rolls around and so many campaigns go forward to integrate autism into our collective consciousness, I find that my greatest impulse is to share my undying admiration for my ASD son, who is growing into a delightful man. He is mercurial, goofy, meticulous, and single-minded. He is sensitive, intuitive, impulsive, and hyper-empathetic. He worries about death, separation and growing up.

Most of all, he is vulnerable. He is aware of a complex world in which many things are just beyond his reach and so craves sameness and routine. He wants those he loves to be always near him. The heavy mantle of trust he places on us is never a burden because within it is his precious heart that gives love so freely it makes us dizzy with delight. All his emotions are distilled down to their purest form, and there are moments when I am temporarily daunted and disarmed by the intensity.

He is, I have understood for many years, the embodiment of the greatest joys and fears of all humans. He is the precious natural resource we have been charged to preserve. We are honored by the task and hope to be worthy of it, and of him.

Try This on For Size: April is Autism Understanding Month

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Hugs stave off the winter chill during a bittersweet goodbye. See you in springtime.

 

First they called April Autism Awareness Month (many still do). I knew I was all too aware. Now they called it Autism Acceptance Month. I know I accept it well enough. But I’m still trying to understand a lot of things about Autism: why it’s such a wide spectrum and whether all of it is autism or just a conglomeration of neurological diagnoses that need be to be sorted out. I also accept is that it will take forever to understand. So that’s the work I am doing this month: trying to develop a better understanding of the things about Autism that still need work, in contexts large and small. I want to think out loud about the issues and questions that society ought to know so that families living with autism are not pitied, ignored or marginalized while we figure out where the many types of people on the spectrum fit, what their gifts are, and how they need help.

IMG_7953April is a good month for developing understanding – and patience. For those of us in climates where winter has us in a death grip, April is the time that we long for the warmth of summer and totally overreact to the emergence of any sign of spring (watching the snow and ice recede, camera in hand, looking for crocuses). April brings Easter (usually) and other rites of spring that signal optimism about the future. April reminds us, gently, painstakingly, that we have more capacity for joy than we thought after a winter in which our capacity for everything joyful has been sorely tested. April is hope. Let’s start with that thought.

Happy Father’s Day

Taking walks is a Dad-driven activity that varies in popularity among his children.

Taking walks is a Dad-driven activity that varies in popularity among his children.

There are a lot of ways to be a good father. I think the stereotypes around fatherhood are even more constraining than the ones around motherhood – and it appears to be particularly tough on Dads with kids on the spectrum because ASD kids often don’t hew to the traditional mold of father-son relationships. I’ve heard many stories of families with Dads who couldn’t cope with a child on the Spectrum, but am happy to report that I don’t know many of them. Most of the Dads I know have stuck with their families and done their best to support their kids and spouses through this unprecedented time in history when autism went from obscurity to a household word in front of their eyes.

In this world of Dads whom I have seen rise to the occasion of ASD in their lives, my own husband stands head and shoulders above them all in his devotion to, compassion for, and understanding of our boy. He understands what it is like to think in pictures, to read the emotions in a room without need for dialogue, to focus relentlessly on a single goal. He has supported me in my many unconventional pursuits down new paths toward better health and treatment, and sometimes adopted the treatments for himself. He appreciates the gifts of all of our kids, knowing them in a way that is decidedly 21st century even as he revels in a kind of Ward Cleaver image of fatherhood. He plays video games and likes to go on vacation to places where you dress for dinner. He loves Christmas, hates command performances, and requires infusions of salt air and extreme weather on a regular basis. He is loving, stalwart, industrious and hilarious in ways that only those closest to him can truly appreciate. He belongs to us, and we to him, and there isn’t much more you can ask from a Dad than that.

Rocking Autism Awareness

Objects in mirror may be closer than they appear

Objects in mirror are closer than they appear

Many high schools in our area have a big rock on which students advertise the latest fad, inside joke, or activity. They scamper in after hours and paint the rock, and this week some of our enterprising seniors painted it up blue. It’s touching. Still, all I can hear in my head is the voice of Charlie Brown on Halloween night as he looked in what was supposed to have been his bag of candy and moaned, “I got a rock.”

25+ Movies and Shows that Pass the Tests of Time, Patience, and Scripting – and 10+ that Don’t

Yes, we have a lot of movies.

Yes, we have a lot of movies.

In a nod to the late Roger Ebert, I’ve assembled a list of movies and shows that can endure the repeated watching that results with having an ASD person in the family. This list is highly personalized – you may find the movies I love are the ones you can’t  stand – still, I’ve tried to give a quick rationale for why I like or dislike each one. There is one universal truth: if you expose ASD kids to inappropriate language, they will repeat it – in public and loudly. SpongeBob Squarepants deserves a post all to itself. You’ll have to wait for that one. The Same goes for Finding Nemo. The jury is still out on Scooby Doo.

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All of the Scholastic/Weston Woods videos of classic books like Goodnight Gorilla, A Story A Story and Strega Nona

Having the paper books available and turning on the subtitles for each story clearly bolstered our boy’s verbal and sight reading skills.

Sesame Street/The Muppet Show/Muppet Movies

Inexplicably, we go through pro and anti-muppet phases and continue to have lengthy discussions about the “realness” of Muppets. The Muppets are also very useful in teaching about humor and jokes like puns – ASD kids seem to read the social cues of muppets better than in actual people.

Richard Scarry’s Busytown/Busy People

Lovely music and great ways to learn alphabets, rhyming and counting. Also good to have these books handy for reading/storytelling skills.

Dumbo

So many people think this movie is too sad, but there is no greater depiction of the mother-baby connection in animated film. The pink elephants and the crows are also objectionable to some people, but that Casey Junior Train is an icon that endures. It’s what inspired the artist in our boy. For years he would set paper, crayons and paint in front of me and make me (and his teachers) draw it over and over – and then one day he did it himself.

Kipper

His Kipper scripting was so spot-on that everyone at the local pool thought he was British. I could watch this forever. I may have to.

Wallace & Gromit/Shaun the Sheep

Hilarious. A Close Shave is a little scary, FYI. Shaun is a tiny non-verbal sheep – our boy identified strongly with him.

Thomas the Tank Engine/Thomas and the Magic Railroad

The older the better – Ringo, James Carlin and Alec Baldwin if you can find them. At one point I wrote to Baldwin telling him he should make videos as Mr. Conductor in which he eats a variety of foods to model good eating habits – the single act of eating celery and carrots in the Magic Railroad movie changed our lives. No, he didn’t write back.

Cars

The themes seem to resonate – loyalty, frustration, friendship, racing. Skip the second one.

The Wizard of Oz

Our boy’s favorite song: If I Only Had a Brain. Do not, under any circumstances, see Oz the Great and Powerful.

The Sound of Music

My favorite story about this movie: when we were doing cognitive testing, the examiner asked our boy who discovered America and the answer our boy gave him was, “Christopher Plummer.” Also, he drew the cathedral wedding scene using the characters from Scooby Doo.

The Polar Express

No explanation needed. Later this year I’ll do a more detailed post on Christmas viewing.

Live action Peter Pan (2003)

The Disney version pales in comparison to this visually stunning, complex version, in which Jason Issacs’ Hook is the perfect villain with a sympathetic edge. Old, alone, done for.

Chitty Chitty Bang Bang

Truly scrumptious. The child catcher scared the hell out of me when I was a kid, but made zero impact on my kids. Go figure.

The Lion King

I didn’t want to add it to the list, but I had to. It’s the Elton John/Nathan Lane/Jeremy Irons factor.

The Road to Eldorado

Totally underrated – visually stunning with dialogue and songs well worth repeating.

The Emperor’s New Groove

Boom, baby! The incomparable Eartha Kitt. Kronk and his own theme music. Possibly the highlight of David Spade’s career.

Hercules

Pegasus. Excellent soundtrack.

Toy Story

All of them – he literally grew up with them, and Andy’s going off to college is the best story we have yet on transition issues.

Looney Tunes

We did have to hide this one for awhile because his standard response to everything became “Beep! Beep!” but it’s back in circulation now. We simply cannot live without Wile E. Coyote, super genius.

What’s Up Doc?

Yes, Eunice. Our boy dressed as Howard Bannister regularly for months. Possibly my favorite movie ever.

Raiders of the Lost Ark and Indiana Jones and the Last Crusade

These are great – skip the other two.

Don’t

Up

I don’t know anyone who was not destroyed by the first 20 minutes of this movie – it actually triggered such anxiety in our boy that we had to see professional help.

Ice Age

Sorry, Scrat. No redeeming dialogue or plots, and scripted speech from Sid the Sloth is really, really bad.

Jurassic Park

We couldn’t really avoid it, and it really is a good movie but: too much screaming! Also, the only curse word our boy uses is a perfect imitation of Samuel L. Jackson’s “Damn!”

The Sword and the Stone

Yes, Merlin is a hoot, but if I hear “I’ve had enough of this nonsense!!” one more time I will blow myself to Bermuda.

Cinderella

Lucifer the cat was the bane of my existence for years. Too much meanness.

Beauty and the Beast

Gaston and the angry mob bring out all the worst qualities of scripted speech.

The Wolfman

We canceled our premium cable channels after he stumbled on this and became obsessed by both the sex scene and the transformation from man to beast. It did help us communicate at a  key point in his development because we realized that references to the Wolfman occurred when he experienced digestive pain.

Both lists could go on forever, but these are the ones that come to mind without a trip to the movie shelf. If you’ve found anything good, helpful or just fun for older kids and teens please post a comment – we are always looking for more adult content that is not too adult, in terms of language, sex and violence.

Putting Autism in its Place

Written by me on my non-autism blog. Clearly, I’m not that good at compartmentalization.

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Autism Acceptance Month includes Light it Up Blue day, and people find themselves reminded, pummeled and delighted by blue lights everywhere. It’s hard to know how to feel about the hoopla when we try so hard not to let autism dominate our lives. That’s why I moved my autism posts to their own blog. To be honest, though, those were the posts that got the most hits when I began writing Lettershead back in 2009. Much as it would lovely to be vastly popular and widely read, Lettershead is about trying to keep some perspective and focus on ideas that are not directly informed by autism.

Autism casts a long, blue shadow, however. Sometimes it feels like I spent my early years escaping the shadow of alcoholism only to turn and face autism. It was good preparation, as it turns out. An anxious person by nature, living with…

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