Saturday Moment: Halloween Prep in Sodor Brings Some Surprises

IMG_0018He’s on a roll with drawings and decorating, and today the trains need Halloween prep. I never fail to marvel at the focus and precision he brings to these projects, which are totally his idea. Add to that he has positioned himself right in the middle of our own project of reorganizing part of the basement – we are working near and around him, going back and forth, calling to each other and generally making a racket. He is unperturbed. Add to this list of potential antecedents my request that he move part of his train set temporarily so that I can clean out and move a cabinet that holds various frames, craft supplies, toys and videos. I don’t really want him to see the things I intend to give away, but have already decided that I won’t give away anything he wants me to keep. We have finally learned to pick our battles.

IMG_0016I can tell he doesn’t want to move the train tracks out of my way, and I am prepared for him to declare that I am an Onion lady who is too full of organizing.  I wait a while to let the request sink in and focus on something else. Then he materializes in front of me, holding a box of videos: “I’m too old for these.” They are Richard Scarry ABC and counting videos. They are my favorites. But I take them and set them aside with the other “give away” things.

Then he appears with another box of videos, classic Disney this time. “We have all of these on DVD, which is more efficient.” Then I realize that, rather than move the tracks or allow me to navigate around them (which I couldn’t – I’m such a klutz I would definitely step on them) he is carefully removing everything from the cabinet himself.

IMG_0017So while he was constructing Halloween decorations for his trains, he was also making decisions about growing up, and managing change and doing it all beautifully, meticulously, and offering up explanations along the way. A task that would have been frought with emotion and behavior management (and that in younger years I would probably have attempted in the middle of the night or while he was somewhere else) had evolved so peacefully I almost didn’t notice – until I realized that he was having an easier time parting with things than I was (you don’t want that 12-foot train puzzle that you put together a thousand times, really?).

Not so long ago I wondered if he would ever grow out of some things and I concluded at the time that it didn’t hurt to wait. It’s not always true that all things come to those who wait, but on this day it is. As I was reminded by him more than once this week, “Patience is a virtue, Mom.” True, that.

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.

Putting Autism in its Place

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

LettersHead

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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The Fixit Playlist: 30 Songs that Reset My Brain

Taking a sunset drive

Taking a sunset drive

A few years back I was riding with a friend and fooling with the cd changer in the car. Rage Against the Machine came roaring out of the speakers, practically ejecting me from the car. “That’s my fixit playlist,” he laughed, “for when I need to reset my brain.” His list included Radiohead, The Clash, all music that would get adrenaline flowing in just the right way for him. I thought it was a brilliant idea and started compiling my own Fixit playlist. Being me, I came up with several lists and for years now have been burning Fixit cds with dates on them to make sure I knew when I had finally hit on the real deal. The criteria were that it had to improve my mood under any circumstances and when played the second or third time I did not start skipping songs to get to one that worked – they ALL had to work so  could leave it in the car player for days (weeks) and at time and know I had access to the necessary music. I drive almost every day for long distances and do much of my best thinking in the car, so the music component is key. Someone in our ASD support group once noted, “I do all of my best crying in the car.” It’s true – the car is where we pull it together, and we need the right music to get us to the our next destination (school, doctor, therapist, IEP meeting, liquor store, etc.) in the right frame of mind. A few weeks ago I realized that I was always reaching for the April 2012 disc, so here’s what’s on it (with a few add-ins because even that one is missing some key songs).

This is my list. It’s not about taste, era, nostalgia, or identity. It just works. What’s yours look like?

I started to put in links for the individual songs but it was clear that many of them would not lead to the actual music, so I put in links to the artists instead (and, as an aside, some of these official websites are really creative, really cool or really hilarious).

Saturday Moment: What Are You Going to do With Me?

Dinner out earlier this week

Dinner out earlier this week

It’s the end of one crazy week and the start of another. We’ve had almost every kind of moment – panic attacks, unrequited love, dancing for joy, teenage rebellion, violations of personal space, bursts of creativity, and early morning hugs before school that reset our relationship from whatever happened the day before. And today an exchange – scripted, yes, but genuine all the same – that is both typical and necessary following transgressions large and small:

Me: “You need to stop ______, please.”

Him (hands on hips, smirk on lips): “What are you going to do with me?!”

Me (deadpan): “Love you forever.”

Him (nodding): ” That’s what you’re gonna do.”

Yep.

Is it easier to blame Autism than Guns?

John 11:35 Jesus wept.

John 11:35 Jesus wept.

I don’t want to but I have to weigh in on the Sandy Hook tragedy. I doubt we will ever truly know everything that led that young man to do what he did, but I feel the need to reiterate what the Autism Society of America has already said: that mass murder is not a symptom or a behavior of autism. His brother mentioning autism in a description of the gunman doesn’t mean there is a causal relationship between what happened and the alleged diagnosis of autism, it only means – maybe – that he was a person who may have needed more support than he was getting. In today’s America, that could describe a whole lot of people, the vast majority of whom have not opened fire on anyone.

But I am appalled that the ability to do just that – open fire – on anyone, anywhere, is seen as a founding-fathers-given right to Americans. We have lost our understanding of what gun safety is and the value of a good background check – which in this case would have done little good, but that is not true of some other events in this year of seven (yes, seven) mass shootings. But limiting the number and type of weapons available to a single individual might have made a difference in the scope and horror of this event.

Don’t let the media – or anyone else – turn the tables on the real issue and blame a disability instead of political cowardice on the fronts of health insurance and gun safety. I join the chorus of voices calling for increased gun safety and a stronger mental health safety net for all Americans.

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So, How Was Camp?

I wish there was a simple answer to this question.  Was it the right thing to do? Yes. Are we glad we did it? Yes. Did it result in miraculous, instantly recognizable changes? In some of us, yes, but how if affected our boy and how it influences our next moves to plan for his transition to adulthood I am still not prepared to say. We still need to assess his physical health with regard to his diet and digestive system not to mention the dislocated knee (which appears to be fine). We also need to benchmark his academic skills and assess   his social development.  The latter shows greater depth and fluidity, but I can see the potential for him to fall into old patterns with old friends. He seems generally more communicative and more cooperative, though we are still in the glad-to-be-back-home honeymoon period.

Those miraculous, instantly recognizable changes allude to those of us left to fend for ourselves, boyless, at home. My own angst has been clearly documented here, but it must also be said that for all of our hand-wringing the most surprising change was that things here did not change nearly as much as we expected. Special diets, elaborate toy tableaus and the occasional Gerald Mc Boing Boing sounds are not as disruptive to our lives as we may have thought. In our case, the burdens of autism are not nearly as heavy as we were lead to expect – when he was gone we felt more far more emptiness than relief. In earlier years we may have felt it more than we did at this point but I feel the need to point out that the camp experience was more about him being away from us for his benefit, not our need to be without him. Some people really do not understand that. And we do recognize necessity that our other children need to know that his independence as an adult is just as important to us as theirs, which is a point that absolutely must be made with both actions and words. In reality, the hardest part of the camp experiment is that it is so lovely to have him home that we are loathe to think about ever letting him go away again (for the record, he is also perfectly fine with that).

And there’s the rub. The urge to become complacent is, at this early moment, almost irresistible. But we must keep our eye the prize of independence, or whatever measure of it we can hope to achieve. He is vulnerable – we know now that he can endure a lot but we also know that he may be just removed enough cognitively that he might be forced to endure things that he should not. He was in an environment that we knew would not exploit his good nature – where else can we possibly find that outside of home?

So camp, in the end, did not give us as many answers as we might have hoped, but it is making us rethink our questions.