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.

Developmental Dilemma: What To Keep

Part of me thinks that no one should ever have to outgrow Toy Story.

Part of me thinks that no one should ever have to outgrow Toy Story.

Ever since the 18th birthday earlier this spring, I’ve been in a state of emotional turmoil. It’s only a slight exaggeration. Now I try to make some sense of a teenager’s room that runs the gamut from Winnie-the-Pooh to Scooby Doo with everything in between. It’s a collector’s dream and a parent’s nightmare. I’ve learned the hard way that throwing the wrong thing out means I will be hounded eventually to replace it – it could be five weeks or 5 years from now, just long enough to make what cost me $1.99 in 2003 now cost $67.99 on Ebay today. I know parents who have purged their house of everything Thomas and Pixar to help their kids become adults but my problem is that I really am loath to replace Toy Story with the Man of Steel. To me, that’s just another kind of arrested development. More importantly, he’s not interested in that stuff – he sleeps soundly through superhero movies on a regular basis. He loves what he loves.

IMG_4800And the books. Which ones will he ever read? How can we know what will prove useful or interesting, just by waiting patiently for him to notice the ones placed where he sees them every day? To get rid of the easy readers seems mean, to get rid of the more advanced books seems pessimistic.

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Will he look beyond the action figures to the books behind them? Maybe.

Downstairs are the bins of paperwork that requires filing or tossing – one for school, one for insurance, one for general ASD stuff, one for transition, one for keepsakes and artwork that show developmental progress, or the lack thereof. But I only end up weeding things out I know are redundant – I just don’t know when a school or a court will need to see what we have and I’m afraid to get rid of something that could be a key piece of evidence of … I don’t know. And every bin or toys or papers brings a flood of memories and emotions that don’t want to stay on the shelf where I keep them. I am trying so hard to focus on the future that sifting through the past seems like a bad idea just now.

So I guess I’ll stick with The Wizard of Oz and The Sound of Music – at least they are live action – and wait a bit longer for the moment when we can at least move some stuff up to the attic. And we will know soon enough what schools, doctors, agencies and lawyers require and then, maybe then, we can let go of at least some of the past.

Remember Cats versus Dogs? They’re all in here.

The April 15 Post That Wasn’t

IMG_4098I was almost ready to publish a post on April 15. I just needed to load the fox photo. But I had an appointment, and on the way home the news on the radio changed everything. Bombs going off in my adopted city on a street I used to traverse every day. I’m still processing  the bombing and all that happened in the days after – me and millions of others. So, after today’s moment of silence I returned to the post I wrote on that day, a day that was already profound for me, even before 2:50pm.

A Different Kind of Marathon.

April 15. Boston Marathon Day. Tax Day. Halfway Point in Autism Acceptance Month.

SONY DSCI bailed on posting every day this month, obviously. Priorities change, and with so many people saying so many things about autism, if I am going to add to the noise it had better be worth it. But on this marathon day there is something to be said about the value of pacing yourself when facing the long haul of parenting. I’ve been following a thread online in which parents share their strategies for separating from their kids for personal time, shoring up their marriages, and finding ways to talk about things that aren’t autism (it’s harder than you think). That conversation follows a number of pieces I’ve read lately in the mainstream media where people without children feel the need to weigh in on the foibles of those who do have children. Too much time on your childless hands, Mr. Bruni? If people without kids are irked by people who talk about their kids a lot, imagine the pique in those who find themselves surrounded by the misplaced angst of parents struggling with sports team playing time or ivy league SAT requirements. And it’s not so much pique really as it is having absolutely nothing to add to such conversations. It makes a better listener and people watcher out of me, for sure, but as the years go by whatever skill I had for small talk sort of waxes and wanes with wherever we are with our boy. Sometimes it seems to have atrophied and I almost don’t trust myself at parent functions for my typical children anymore because the urge to say something truly inappropriate (but funny, I assure you) is almost overwhelming. It’s like the vegan invited to an event at a steakhouse – just because the parameters of your life are different you don’t get to ruin it for everyone else. If it bothers you that much, stay home, right? Wrong. Choose events wisely, but go, and bring your empathy with you.

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So, I left writing this post to do work things and then I checked back on the parenting thread I was talking about, and was validated and educated by what I read there. People have made some hard choices to keep balance in their lives and create independence for their children. It made me think, and so I went and sat in the rare spring sun to contemplate the long-term plan. Out of nowhere (kind of) appeared the boy. He wrapped his arms around my head, kissed it and said, “Are you worried about something?” He wedged himself into the chair with me, leaned his head on my shoulder, and twirled the hair at the nape of my neck with his fingers the same way he did as a toddler. I couldn’t answer him. We heard a door open – saved by the Dad, taking a break from work. We scrambled upstairs and while I crossed the room to talk to Dad, the boy looked past us out the window and pointed (now he points!):

“Baby foxes!” He spotted them – four in all – scampering about, camouflaged almost perfectly against the oak and maple leaves. We would have been too preoccupied to notice, but we found ourselves checking in on them all day as they wrestled and napped, waiting for Mom to come back to the den that sits just up the hill from our house.

He feels ahead of me, he sees beyond us. We have a lot of thinking to do.

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.

Ten Years On: Revisiting the Magic Pebble

This is an essay I wrote before blogging was invented, composed for someone who was our first magic pebble. I posted it a few years ago on LettersHead, but here is clearly where it belongs. This is for you, K.

We used to read William Steig’s Sylvester and the Magic Pebble every night.  It’s the story of Sylvester Duncan, a young donkey that finds a magic red pebble, and, faced with a fierce lion on his way home, Sylvester panics and turns himself into a rock.  His frantic parents look all over for him, but give up in despair after a month of searching.  They are reunited a year later when his parents lay out a picnic on the rock that is Sylvester, and happen to find the red pebble and put it on the rock.  Sylvester wishes successfully to be himself again and they all go on happily with their lives, saving the pebble for a time when they may need something more than to be together as a family.

Whenever I read this story to our children, I find myself identifying with various characters in the story.  On some days, I am the mother and W. is Sylvester, hidden in the stone of autism, wanting to get out but locked in the by the spell of the pebble.  We are Mr. and Mrs. Duncan, haplessly eating lunch on the rock, wondering how we can possibly go on with our lives when the fate of our son is such a complete mystery to us.  On some nights, the story in my head ended there, with W. still trapped inside the rock.

There are more dramatic versions.  There’s the Harry Potter version where Sylvester the Dobby rock starts hurling itself around, crashing into people and things, a possessed bludger that no petrifying spell can stop.  The wayward rock eventually wears itself out, but only after leaving most of the Duncans’ town of Oatsdale beaten and bewildered.  Mr. and Mrs. Duncan split a bottle of dandelion wine and dream of summer on the beach.

Occasionally, I am Sylvester, trapped inside the rock, wondering how I got there and wanting only to sleep to forget how I got myself into such a spot.  The world moves around me, the people and seasons come and go but because I am a rock and I don’t look like myself no one knows I am there.  I am inches from the magic pebble that will set me free, but I am helpless to touch it or even be sure that it is there.  My parents are gone.  I cannot be rescued the way Sylvester was; there is no one to rejoice over my return so perhaps it doesn’t matter whether I am a rock or not.  But just as I warm to my mid-life crisis, I am touched by my magic pebble – it is W., reaching with two fingers to push up the sides of my mouth to make me smile.  And it is M., with a smooch that could bring the hardest granite to life.  And A., too, working her own magic just by reading her own book on the floor next to us.

And there are magic pebble days, days in which someone or something brings our beloved W. back to us.  On these days the story ends just as it should; the boy I see and the person he is inside are one and the same and we inhabit the same world.  The magic is the love we share, in his friends, in the water and sand of the beach, and in the people who work so hard to make the world understandable to him and to make him understandable to us.  These are the best days of all, and as the years go by there are more and more of them, and that is a miracle I don’t need a book to help me understand.

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).

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*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.

The Mystery of 2009 Returns

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Tonight we went out for an early dinner, and I could not convince the boy to tear his eyes away from the iPod. Usually he will at least look out the window at the cows on the hillside. Nothing doing. He met my eyes and said with frustration, “Mom, I am just too afraid of the world.”

“Why?”

“It’s just since 2009, when I was 14 and I saw the dates.”

“What dates?”

“Here, let me show you.”

He taps gently, furiously, and precisely on my phone, spending a lot of time on the Wurdle app, and then hands it back to me and sighs.

“Never mind, I can’t find it.” But then he takes it back and opens the calendar. Nothing remarkable.

“Dates. Birthdays. Worrying about death.” He hands back the phone and puts his earbuds back in.

Conversation over.

This is the beauty of blogging. I can go back to the summer of 2009 and see what I wrote – because the dates and the fear and this specific kind of withdrawal were all new to us then. But even after reading what I wrote then I don’t really know why all of those fears showed up today or how long they will stay – it could be as simple as the disruption of a half day at school or the disappearance of his memory bracelet from his dead friend. Or perhaps it is the big birthday that is coming up soon – or maybe it’s my worry about that reflected on him. He has my feelings before I do sometimes, I think.

Spring is coming; we’ll figure it out.