parenting a teenager with autism

1 April 2014

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.

30 July 2013

The Miracle of Enough Sleep

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It is a breathtakingly beautiful early summer morning – sunny, cool, dry – and for once I do not have mixed feelings about being awake to appreciate it. I am not a morning person. Never was, never will be. I am awake because I have to be but I can also say that I have had enough rest. This is new.

Last Friday night I slept for 12 hours. I don’t think I’ve done that in the 20 years since I had my first child. We had an early dinner and I fell asleep on the sofa, moved upstairs to bed at 1am and then woke up at 8am. I was aware of bedtime routines and kisses good night but everyone seemed to know what they were supposed to do and follow through. After a week of 5-6 hours a night, that sleep was not only needed, it was transformative. I faced a busy weekend not with fantasies of a nap but with energy and enthusiasm and a sense of emotional flexibility that often just isn’t possible.

SONY DSCI thought about the parents who have gone for years without even those 5-6 hour nights I’m whining about, and I am thinking about them again this morning. Sleep deprivation plagues many people for many reasons. For those who are awake because they have a sleepless child who requires constant supervision, the exhaustion is complete and relentless. Even on nights when the kids manage to sleep through the predawn hours, parental eyes pop open anyway, expectant of the footsteps that may or may not patter down the stairs. Knowing that the child is asleep doesn’t mean going back to sleep for another hour or two. Usually, worry fills in until they do wake up. It’s a hard pattern to break.

For those of us who face the day bleary eyed and worn out, I hold out for the promise and possibility of the restorative power of sleep. We don’t create sleep deficits on purpose – many children on the autism spectrum have intractable sleep issues and keep parents up until all hours, and we use the few hours while our kids do sleep to do things they can’t get done when the kids are awake. It’s just as important for our kids that we are rested as it is for us – people who’ve had enough sleep have more patience and make better decisions. If you can find a way to accomplish that magic 7 hours of rest, it is worth striving for.  Jane Brody wrote an informative essay on the health risks posed by sleep deprivation – it’s good tool for advocating with family and caregivers to let you cobble together a longer night or a decent nap.

SONY DSCI can’t blame autism for my sleep problem entirely. My boy is a better sleeper than most; it is the other obligations (obsessions?) and the worry that keep me awake.  I enjoy the quiet, peace and dark of late nights. I love being awake when everyone else is asleep. Books and movies are more fun in the dark. For years I sat in the dark on the floor of my boys’ room, waiting for them to go to sleep. As much as that process was driven by necessity, worry and confusion, I genuinely loved those moments sitting (sometimes writing) by the glowing night-light and waiting for the steady breathing and gentle snoring that arrived with their slumber. By the time I tiptoed out, no matter how crazy the day had been, we were all in love again. I wanted to savor that feeling and not go to sleep right away myself. I needed some time to wallow in the normalcy of sleeping children and talk to my husband uninterrupted. Still, there were times when I konked out on the floor before they did.

One gift of adolescence is that it brings kids who sleep in, when school allows it. This break in our summer program leaves my boy in bed at 9am still asleep. I never dared to hope there would be a time when he would master a self-directed bedtime routine at reasonable hour and sleep in on a sunny morning, even with sun streaming through the skylight directly on his bed. It might not sound like a miracle, but in its way it is. It gives me time to write this, time to think up some structure for this unstructured day, time to appreciate the breeze though the open windows after a week of hot and humid weather.

Peace of mind and enough sleep – I don’t think I can have one without the other, and having learned this lesson (again) I am going to try not to forget it.

PS: This is my 100th post. Woot.

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13 June 2013

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.

22 April 2013

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.

10 April 2013

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.

8 April 2013

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.

4 April 2013

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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2 April 2013

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.

1 April 2013

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

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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.