Beats the hell out of me. All I know is that Radiator Springs is out and Pride Rock is back in.
Happy Father’s Day
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.
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.
And 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.
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.
Happy Mother’s Day
He kept calling me over to look at it, but I didn’t see it until I stood just behind him, finally listening to him and seeing what he saw. That’s the lesson for today.
Happy Mother’s Day to everyone out there who has children who help them see rainbows.
Self-Advocacy 101
I found this amended version of my grocery list in the car. It not always easy to determine what he needs, but sometimes it’s crystal clear.
Reflections and Reminders in a Snapshot
Everything is so fraught with meaning these days. While I am processing recent events, I at least have access to some words. I am grateful for:
- the first truly warm day after a cold and unforgiving spring
- a track meet filled with happy, cheering teens
- schools with dedicated principals, athletic directors and teachers who carved out the time and money to create an interscholastic special olympics team that competed on fields among lots of other typical sports teams on this brilliant day
- the incredible young woman who chased our boy for 800 meters so that he could make good time in his race (until he swallowed a bug and then walked part of the way until he could sprint, triumphant, for the last 100 meters)
- the teammates on this yellow bus who waved at our boy through the windows on the highway as we made our way home, and
- the snapping flag at half mast that says that while life has gone on we stand strong in our support for those who still suffer from the wounds of last week.
Never underestimate the power of sunshine and smiles.
The April 15 Post That Wasn’t
I 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.
I 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.
***
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.
Today is National Siblings Day. Isn’t Every Day? Okay, Maybe Not.
Who 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.
Rocking Autism Awareness
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.
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.
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.
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.
The themes seem to resonate – loyalty, frustration, friendship, racing. Skip the second one.
Our boy’s favorite song: If I Only Had a Brain. Do not, under any circumstances, see Oz the Great and Powerful.
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.
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.
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.
I didn’t want to add it to the list, but I had to. It’s the Elton John/Nathan Lane/Jeremy Irons factor.
Totally underrated – visually stunning with dialogue and songs well worth repeating.
Boom, baby! The incomparable Eartha Kitt. Kronk and his own theme music. Possibly the highlight of David Spade’s career.
Pegasus. Excellent soundtrack.
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.
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.
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
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.
Sorry, Scrat. No redeeming dialogue or plots, and scripted speech from Sid the Sloth is really, really bad.
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!”
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.
Lucifer the cat was the bane of my existence for years. Too much meanness.
Gaston and the angry mob bring out all the worst qualities of scripted speech.
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.
I Wouldn't Have Missed It 