Today is National Siblings Day. Isn’t Every Day? Okay, Maybe Not.

SONY DSCWho thought this day up? Hallmark? Well, it’s a good excuse to sift through the photos, and it’s amazing how hard it is to find a photo that includes everyone that captures the spirit of our brood and still preserves some privacy. I think I found it.

Siblings of autistic children don’t have it easy, and we do our best to recognize their challenges and build some rewards into the process of accommodating the necessary quirks of life with autism. Remember my movie post earlier this week? Access to movies, screens and electronic devices like iPods is exponentially greater in our house than it would have been without autism (I think). We’ve made more trips to the beach, given more nods to everyone’s food preference (a special diet for one person demands more flexibility for everyone, sometimes), and we’ve tried, not always successfully, to give everyone the spotlight at time when they wanted it (sometimes they don’t).

The hardest thing so far is giving each child space from the others when they need it to create their own identity. Sometimes it’s difficult for ASD people with a developmental delay or cognitive impairment to see a younger child grow past them, as it were. And siblings are not always diplomatic in creating the separation that’s necessary for them to grow up. It’s hard to do and hard to watch; everyone involved experiences frustration, anger and hurt. It’s typical for all families to go through this, but as parents it is much harder to keep ourselves from intervening than we expected – we are so invested in the idea of inclusion that we have to remind ourselves that our children need to prepare for a life apart from each other. If we give them the space they need now, we hope the bonds they forged when they were young will stay strong after the angst of adolescence has passed. That’s the idea, anyway.

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.

Do

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.

Light it Up Blue: sometimes the reflection is brighter and more beautiful than the flame itself

Our blue light

Our blue light

As I angled the camera to get a good photo of the blue candle, I saw that the reflected flame is more beautiful than the original. With all the talk of Holland* and dashed hopes that some of us face with an autism diagnosis, with all the planning and worrying still to come, with all the explaining and misunderstanding and misinformation in the world out there, with all the emotional collateral damage yet to assess, there is still a light that shines in the darkness of what my life would have been without him (and his siblings, who show such tremendous grace and humor under pressure). As much as ever, I embrace what I wrote in 1998 when I tried to describe what turned out to be autism: this boy is closer to heaven and hell than I will ever be on this earth. His unfiltered (or sometimes, overfiltered…) take on the world reveals the sublime and the absurd and gives me the courage to keep fighting demons that, without my children, surely would have overtaken me long ago.

But I know the roles can reverse. There are many who justifiably curse the cloak of darkness that autism drapes over their child. It’s impossible to be grateful for every moment; there are millions of them that are best forgotten. But it’s in those dark moments that we are most grateful for the light when it does return (if we can just remember where we hid the matches).

***

*The Welcome to Holland essay inspires many people when they first face a disability diagnosis, but Susan Rzucidlo’s Welcome to Beirut has always been my personal favorite for families on the spectrum.

Easter Monday, April Fools’ Day, Autism Awareness Month. The Mind Reels.

SONY DSC

Renewal and irony and reality all converging on a single spring day. Melting snow, green shoots, black earth. The extremes of New England’s seasons are the metaphor I cannot ignore.

I tend to roll my eyes on the awareness month for anything, and even more so for Autism Awareness Month because I’m conflicted about foisting upon the world an awareness of what I consider to be our private business. But making the world more navigable for our boy is part of that business and thus I need to try to find ways to use the opportunity that autism awareness month presents without seeming insufferable and needy (good luck with that, I know). And what is a blog for if not for saying something that I think might be worth reading? I ask myself all the time why I do this and most of the time the answer is that I write about it because I can’t not write about it. From my perch, autism awareness is as much about the journey and the humor and poetry borne of the angst and the crazy – it’s not nearly as helpful as what others are contributing to the dialogue, but it’s what I have.

So in a nod to the everyday awareness that we have of autism, I’ll post something every day (an essay, photo, or link to those who are saying it better than I) in April in hopes that something and interesting and good will come of it.

Today, John Elder Robison continues to fight the good fight for people with Asperger’s Syndrome in the wake of Sandy Hook.

Saturday Moment: “Is THAT the Holy Child?!” The Pieces Fall into Place at Mass.

The Scene

Our church as it looked in January 2013

For many reasons going to Mass is a production for us (I documented some of our more memorable visits), and so we do not attend as regularly as I would like. The politics of the Vatican in recent years did little to stoke my religious fervor but we do make frequent trips to the empty church to say prayers for those we love, and in particular to remember the young friend my son lost to leukemia last year. The choice of Pope Francis I last week led us to venture to Mass this past Saturday afternoon, in honor of the forgiveness, renewal, and the promise of a fresh start his papacy and this Easter season may hold for all of us. It didn’t hurt that our boy, after a sigh, seemed willing to brave the crowd if it meant a chance to recall his friend. So off we went, arriving early so we could get a seat with a good view of the altar and the Blessed Sacrament.

We usually sit in the front section a few rows back. Hanging from the vaulted ceiling high over and in front of the altar is a massive crucifix with a fairly graphic representation of Christ. It has always been there, in that spot. There we sat, with my boy and his iPod open to a picture of his friend. He had used the paint app to put a yellow halo on his head, and he held it up high so that it faced the Blessed Sacrament. As I reached up to lower his arm gently he looked at me in alarm, pointing to the crucifix as if seeing it for the first time.

“Is THAT Jesus?!” he said in a stage whisper. I nodded, two fingers presses to my lips to remind him to speak quietly and to keep myself from smiling.

“Is THAT the Holy Child?!” Suddenly, the connection between Christmas and Easter began to forge in his mind.

“What HAPPENED?!” I told him we would talk about it later but the questions kept coming.

“Is he dead? Who killed him? See the blood?” He turned the iPod so his angel friend could see, too. That almost did me in.

Finally, in the car I did my best to tell him the full narrative, Christmas to Easter, promising him that we will go back during Holy Week and see the stations of the Cross that tell the entire story of the Crucifixion. He was wary, and raised his hand, palm toward me.

“I’m good.” Then he thought for a minute, playing something in his head. I mentioned that we have a movie at home that tells the story of Jesus.

“Wait! I get it!” And then he did a perfect imitation of the announcer’s voice on the preview from one of his Christmas videos:

“JESUS of NAZARETH!! That’s him!” It only took, like, fifteen years.

When we returned home he bounded up the stairs to say hello to his sister. She came downstairs, laughing.

On this visit in January he didn't even notice the crucifix.

At that point he didn’t even notice the crucifix.

“What happened? He came up to my room, jumped on my bed and said church was AWESOME. He never does that when he comes home from anything, ever.” I told her everything, and she went up to his room and hugged him. A while later he emerged and called down to me, standing at the railing where I could see him.

“Mom, does Jesus make our hearts happy?”

His smile, his voice, and the way he had his hands clasped over his heart told me it wasn’t really a question.

Saturday Moment: Going to the Movies is a Contact Sport

IMG_3528We are movie people. When our kids were small they didn’t have special showings for kids and people with autism like they do now. I think it’s great that they do, but we’ve kind of developed own set of tools and rituals that get us through the movie experience. For many years our boy spent every movie happily on my lap, with my arms wrapped around him and his hands firmly over his ears. That was how he managed the sensory overload of a loud movie. When he moved to his own seat he would do one of two things (after eating exactly half of his popcorn and giving the rest to Dad), lay his coat on the armrests and go to sleep half leaning on me and resting on the coat, or put his head on my shoulder and have me put my hands over his ears while he watched. I am in awe his use of sleep as a coping mechanism when he is overwhelmed or distinterested. How many people do you know who can sleep soundly – snore, even – through The Avengers, Thor, Iron Man 2, and 8 innings of a Red Sox Game at Fenway Park?

It’s been a lackluster winter for family movies (with the notable exceptions of Life of Pi and Lincoln, both of which he sat through, riveted and perfect) so we haven’t been in months. Finally, cabin fever drove us out of the house to see Jack the Giant Slayer and this time the boy and I found ourselves watching shoulder to shoulder as I waited for him to lean over and nod off as the beanstalk wound its way into the sky. But the lovely girl and the prospect of romance kept him awake this time, and he kept whispering to me “Do you think Jack will marry the princess? Are they in love? Are they going to get married? Will her father the king approve?” Usually the only questions I get are whether this is a short, medium or long movie, so the specific plot questions and the arm tapping and hand squeezing and his turning my head to look at him when he spoke to me were all new in this setting, and most welcome (but his brother did move one seat down).

If you sit in the front you can put your feet up and no one cares.

If you sit in the front you can put your feet up and no one cares.

But the best part was when the grotesque giants made their first appearance and I instinctively raised my hand to cover his eyes and at the exact same moment he did the same, covering my eyes with his hand. There we were, side by side, with our hands clapped firmly over each other’s eyes, trying to keep each other from being scared. He knew it was funny, too, even as he kept his hand firmly in place until we agreed that we could look at the screen again.

I know it’s a milestone, whatever just happened there. It’s a new level of reciprocity and sophistication, a point at which he now wants to take care of me the way I try to take care of him. It’s what we wanted and worked for but not necessarily what I expected to happen, because at some point expectations get to be counter productive when you are raising kids, whether they are typical, autistic, or anything else. Goals are essential, but expectations just get in the way of seeing and responding to what is right in front of you, and if you are lucky someone will put their hand over your eyes during the scary parts.