We’ve just finished a documentary on Stephen Hawking and I hand Bobby the dvd and ask him to put it in. “What now, Mama?”
“Wait and see,” I tell them.
As the film starts, my three children, all at various points in the spectrum, all engaged in their own private worlds, perk up and stop to look at the tv where sounds of a person humming begin spontaneously upon the dvd loading.
All three set aside their cards or books and watch. Lily peppers me with questions as music plays and a child(?) draws people in vibrant markers.
The screen fades to black and Lily asks me why it is black; the sounds of a child screaming repetitively begin to get louder and faster. The screen isn’t black now, just dark, and the mother calms the screaming child and they sing a song together. Lily is full of questions at this point. Who is Mandy? Why is she screaming? Why’s it still dark?
This is a different autism than my children’s. They watch, glued. Bobby, now 21, and the most severely impacted (although less each day), goes “hummm” as Mandy eats and looks at a computer screen in the dark.
Autism doesn’t look the same now for him as it did a decade ago; you’d never guess it to see him now just how hard he was to handle, how much effort it took, how much like this teenage girl he was like. But he made good progress after his stroke at nine, changed, so this presentation of autism is not one I feel I can relate to personally, not in the same way. This is a teenager much more severely impacted than my son was at the same age. It’s one I recognize, though, and know that many families on our autism blogs directory deal with, especially self-injurious behaviors and aggression towards others.
Part way in, Rosie asks what we are watching. She’s watched silently, not asking the same questions, any questions as Lily has up to this point, and I tell her we’re watching a movie. Bobby’s resumed reading his book on the couch, looking up every now and then when a sound from the film catches his attention.
When Mandy meltdowns on the swing with her father, Bobby peaks up from his book to watch for awhile and say that the dad has overreacted. Lily comments that it must be hard to do this. And Rosie claps her hands over her ears when the parents argue and then goes back to twirling her hair in her fingers.
This is a blunt look, not so much from the parents’ perspective, not so much from the autistic’s, but just a look; there’s no internal states represented, and it’s an interesting way to get the story. And then I realize that many movies don’t give us the internal states of the characters, either. There’s no voice-over and so much of what I watch relating to autism has a voice-over. This just has the action and the reaction and the monotony of days repeating. There’s despair coupled with fierce joy in a moment.
This I know, all too well. This I have experienced for too many years and I am glad those days are gone. I think, like Lily, that this must be hard to do. 16 years of unending care for a child who lashes out and hits unexpectedly. I was relieved when the aggression was over, when I wasn’t Bobby’s jungle gym or punching bag and still to this day I wonder was it the meds before the stroke, good intervention and boundaries or the stroke that seemingly removed the aggressive part of his autism? I do not know and will never know.
The girls snort in laughter when the mom collapses into the swing next to Mandy after the meltdown and fight are done. Why this is funny, I am not sure, but I take their word for it.
Lily asks, “Is this a movie, Mom?” And I say, “Yes, a story of one family” and I have to pause it so that we can talk about what autism is, that it is a spectrum and that Mandy is much more severe, that not all people with autism will act like this, will hurt others, that autism is not an excuse for aggression ever. This takes some time.
I hit play and we continue to watch the movie. They think it’s funny when Mandy asks her mom, who is sleeping, if she’s dead. And it is. If the days are difficult for Mandy’s mom, Jeanne, then the nights are a special kind of hell. I remember that, too.
One story, I think. This is one perspective. It is well done, but I know this online autism community. Some will love it; some will think it didn’t show how bad it can be. Others will hate it because it doesn’t represent their reality. I think there’s no winning with this community and in the end being true to our own principles is the way to go. I think Janet Grillo; who wrote, directed, and produced this film; was true to hers.
We expect in the online autism world for documentaries and films to reflect our experience; many get angry when a new film comes out and doesn’t reflect their reality.
This is not my reality; it is not my children’s reality. But it could have been, I think.
And then Mandy comes home from school and majorly meltsdown and the mom cowers in fear. All three kids are riveted at the screen. Bobby talks nonstop, but the girls just watch silent. They are shocked. This is outside their experience, too, and I think, this is one flavor of autism. It is not our flavor. Having been the recipient of Bobby’s meltdowns and aggression when he was little, I can’t imagine living through it year after year. He went on medications to control the aggression and they helped, but the costs were high. I was relieved after his stroke when he stayed off the meds and the violence didn’t reassert itself. A few years ago when he started to act out again, we nipped it in the bud, made it clear he wouldn’t be at home if he was going to be aggressive. It’s not been an issue since and I am grateful he was capable of understanding and controlling himself so that the issue that’s building in the movie, this decision looming is not one I have to make, not one I had to carry out.
Lily asks over and over why Mandy is so aggressive and to listen to Bobby explain is illuminating; Bobby says to Lily, “She doesn’t have the lucky kind of autism.” And I feel my nose tingle and tears start. What do you say to that?
Lily says during a quiet moment in the film, “It must be hard for Mandy.”
After the attempted dog walk that ends with Mandy attacking her mom, Bobby says, “Something tells me she won’t be able to keep Mandy at home much longer.” Some of Bobby’s friends at the day center live in residential care settings, in group homes. Bobby has seen people at the center act aggressively. He has seen police called when a fellow client has acted out violently. He knows there are consequences to this kind of acting out.
The kids and I agree that the pizza restaurant scene may be the very best in the movie. Lily says Mandy should yell out “Stuff, stuff, stuff!” instead of “Shit, shit, shit.” You’ll have to see it, but it’s funny and light and sweet. I’ve gone from crying to laughing. The girls are enchanted at the plane scene that follows the pizza scene.
I’ve spent the whole film waiting for Bobby to realize that the mom is one of Sabrina’s aunts from the show he loved as a kid. He’s not realized it. I don’t say anything. It’ll take too much work to explain it.
After a tense scene between Mandy’s mom and Tom, when she confronts him about why he’d want a relationship with her when she has a child like Mandy, Bobby reacts with a “Whoa,” while Lily hollers, “stay, stay, stay” over and over when he leaves and Rosie rolls over the floor, her feet in the air, lost for a moment in her feet, in the sensation of the carpet on her back as she rolls back and forth.
They notice that Mandy sleeps through the night; Bobby exhaling “huh.” Bobby’s said, “huh” a lot; this is an excellent film for getting the kids to consider all sorts of things. It is not for the faint of heart, though. It is not for all families, but even in the worst places of this, my three kids notice what should be noticed. They notice that Mandy attempts to soothe her mom after a near miss when Mandy melted down in the car. But what does it say when it is obvious to three children, each in different places on the spectrum, that Mandy living at home is not a good fit, not the way it is? I wonder, thinking of bloggers I know who grapple with worse, what it means that the kind of in-home assistance and training are not readily available? How many parents live lives of despair?
Later on, Jeanne says no to Mandy on going to the dog park; Mandy strikes out and hurts Jeanne yet again and runs off. This is a terrifying part of the film. As it starts, our phone rings, and I pause the film to answer. It’s always interesting to realize just what my kids hear; I explain to my mom that we’re finishing a film that I’m reviewing and using the kids’ reaction to it as part of the review. Bobby immediately guffaws out, “What are we, lab rats?” Lily picks it up and starts yelling out excitedly that they’re lab rats over and over, which has him responding to her that she’s talking like Mandy. It’s a short, boisterous phone call. I can only imagine what it sounds like from my mom’s end. Loud, I imagine.
We go back to watching the film, watch Mandy get found by Tom, watch Jeanne and Mandy check out a residential setting. The kids ask, “How long will she go there?” And I say, “To 21?”
“What then?” I don’t know. And that’s the point; there are no clear answers to what we do with or for our children who grow up and aren’t ready to live independently. I don’t know what we’d have done if we’d wanted Bobby to leave home when he turned 21. If we’d needed him to. I don’t know. I don’t know what we’d do tomorrow, either. But we are the lucky ones; he doesn’t have behavioral issues and he’s doing well at home.
It ends abruptly; the mom sitting down to ponder her daughter who is pleased with this residential school setting. And the girls ask, “But what happens next?”
“Who knows?” I respond, my eyes having leaked on me. And then there’s another discussion, why am I crying? Because Mandy’s happy; she’s found her place. And they jump up and down (not Bobby, who’s wandered off to change his clothes so we can swim), and say over and over, “Why fly away? Why fly away?” Jumping girlies and leaky eyes and this is our autism. Not that autism, but similar. We, as my Bobby says, have the lucky kind of autism.