I Hate this Movie

I hate Hotel Transylvania II, even more than Hotel Transylvania I.  I can say this because I've seen it way more than any human should have to...ever.

Unfortunately, my son Paul loves both movies and today, sitting by his side as he called my attention to various points in the show, I understood for the first time, why.  Mind you, it's still a poorly written film with weird sensibilities, but I understood Paul's love for it. 

First, he loves slap stick.  So anything which has crashes and bumps and fake fights (like Batman the live action), Tom and Jerry Cartoons, you name it, it's good.  The film catches him right where he lives. He points out every prat fall, every silly movement by one of the monsters.

Additionally, Paul thinks he's the little boy who doesn't fit in either spot.  I didn't pick this...he did.  Paul dances to the music, he does all the moves.  He says "Blah blah blah." and pretends to be the vampire. He knows just enough to know, he's not where everyone else is in his own family.  He points to himself when the little boy Dennis becomes a vampire and suddenly has control over all of his life.   Right now, it doesn't hurt to be self aware about how he is and others aren't.

The problematic plot of the movie is the kid cannot stay with half his family because he is not a monster, and cannot go to the human world, because his family is peopled with monsters.   I know to the outside world, as Paul grows up, his disability will be more easily seen than his gifts. They will see him as not able.  He will be like the kid, unable to fully join a world he must live in. 

It's my job to help him hone his gifts so people can be "surprised by his ability," instead of presuming he can't.   Part of me thinks he thinks it will be rather like the character, suddenly gaining all the super powers to be able to fit in both worlds at ease.  Who wouldn't like a magic answer? He brings me a banana and draws a picture of his name and a few other letters I can't quite make out.

He wants a new movie, "Lego Batman." It's a day off and we've done all we're doing today and I have paperwork to finish so I allow it after a negotiation.  "Get changed for bed."  He goes to get his stuff on his own, comes back to my bathroom, knocks on the door to make sure no one is being interrupted and proceeds to change.   I'm surprised by his efficiency.  He also gets the remote and puts it on the movie. Again I'm surprised.  Maybe he knows more than I know. Maybe he sees me like the overprotective mother who won't let him be what he should be. Maybe he's showing me this movie over and over and over again to show me what he can be...maybe it's a message to me.

Oof.

Now I really hate this movie. 

The Biggest Disability

Every once in a while, I'm reminded of my son's disability, of the reality of Downs Syndrome.  Most days, he functions so well and so seamlessly in the family, it doesn't get considered.  He's their brother. He's our son.  We go about our day, breakfast, clean up, get dressed, make the list, organize the day.  The kids do their work books or play. We have lunch. The teen goes for a run.  The next teen plans her afternoon on the phone, the girls play a game and the boys pair off and I do whatever work didn't get done earlier.  Until recently, I spent a lot of time writing.

But my son is getting older.  He'll be seven in September, and with that growth, he's become independent, if not safe.  He knows what needs to be done to make a sandwich, to pour a drink, to go outside.  He cannot make himself a sandwich, pour a drink, or go outside without assistance.  But he does not know that.

When we go out to the park, I spend my time worrying about his running, and about how to keep up with him when he will get taller and faster as I get older.  He says "Hi" to everyone on the trail, and wants to go up to every dog.  I worry about him getting bit because he might be too rough with the dog.

While working in the kitchen, he pulled a cooler to me.  I had to tape it shut because he wanted to get in it. Clearing out the room of trash, he called me to come see his bed. He'd placed stuffed animals on it.  "Look." he said, and before I could compliment him on his project, he ran to his sister's room to yell into the fan, and I worried about the fan.

We signed him up for swimming lessons.  Within minutes, he'd escaped the instructor and jumped into deep water, requiring a rescue.  He now wears a life jacket for the lessons, but the lesson I keep learning is be afraid.  Be vigilant.  No matter what.   Because while Paul's independent, he's not safe.

Back when I was just a teacher, I had a student whose mother hovered.  I wish I could apologize to her.  I now understand her fear.  While a teacher, I preached independence, self sufficiency.  I didn't have to live with the random wrong or dangerous choices her son made every day in their home.  The school doesn't have a microwave or a toaster or a bathtub to worry about, and my classroom came with two assistants and multiple locked doors to prevent random running and a high fence around the grounds.

I still want him to become capable, so that he doesn't become safe at the cost of capacity to act, but it is hard. It would be easier to stop pushing him to become more capable, It would be easier to lock him in, lock everything up, and make the world padded for his protection, but only easier until he entered the unpadded world.

Both the mom and the teacher in me knows he needs to be able to act in the unsafe world.  So I took him today for a little run on a trail, his sister, him and me.  He loved it, except for the leaf he threw from the bridge that got caught in a spider's web.  It was supposed to fall into the creek. He felt vexed it didn't, so he threw another one.  That one floated past the web. But the original leaf remained suspended.  Watching the other leaf float down the stream, I noted the better leaf didn't make it to the water. It would have floated splendidly if it hadn't been caught by the sticky part of the web.   The web kept the leaf safe from getting wet, but also kept it from moving on, becoming a boat, and traveling further than it could go by itself with the dull summer breeze.

When we got home, I thought about how afraid I'd become for him, and how dangerous that fear was for him, even in some cases, more dangerous than what I sought to protect him from.  I would trap him as the spider, suspend him from growth while keeping him safe.  So I've written notes to myself on his IEP, because his objectives and goals of self sufficiency and capacity can only be reached if I make some goals and objectives to be met too.

Let him begin to float down the stream.

The Very Necessariness of Everyone

It was a cold afternoon but I'd agreed to a play date at the park and so I trundled the four littles into the van for what I hoped would be a bit of fun.  The playground had a fenced in area that would allow the five, four and two year old to play without me hovering. It was ideal for someone with a lot of little people.  Other mothers apparently thought so as well, as I spied other Moms with kids in tow, helping their kids to get on the swings and enjoy the slides.  The women I'd planned to meet hadn't yet shown but it felt good to be out in the world. Winter and having a two month old had created a sort of cloistered existence for a while. 

We began the usual Stay at Hom Mom inquiries of each other, name, number of children, what you did before you were a mom, while coaxing nervous children to adventure out and adventurous children to tone it down.  Paul wasn't interested in being out in the world.  Normally he loves the park but today, he stayed clinging to my side.  The other mom tried to get his attention.  Paul looked away.  She asked how old my son was.  Her toddler was 2 1/2, the same as mine.  Hers was talking.  Mine was not.  There was a visible size difference.  She was putting the pieces together before I volunteered that Paul had a disability.   In almost that same moment, Paul hugged me and said in his deep blurred voice, "Iloveyu." to me.  She beamed.  "He said 'I love you.' I heard it."
I agreed and gave my son a hug.

"I used to work as a translator for the deaf." she explained.  I talked about how Paul liked to sign baby and eat and a few other words.  "You know, I knew a woman with Down Syndrome." she volunteered.

Paul may not say much, but he triggers a lot of conversations, stories that should be shared and need to be told.  She agreed to share her story.

"When I had my third son, there were medical complications.  I had to stay in the hospital for a week." she began.  Her voice got a bit shakey. The next part of the story was hard even in retrospect.  "When I came home, my son who was three had spent those seven days at his Aunt, my sister's house.  He didn't talk for three years after that."  We sat staring at the children at play for a moment.

I shared how my own daughter had elected to remain mostly mute for several months after Paul's birth and subsequent hospitalization.  I knew the pain of having someone so precious, so young, so deliberately silent.  It had taken six months of therapy to unleash the happy chatty person I now shared my days with; whereas this mother had to wait three years. 

She nodded her head and resumed. "We tried everything, sign, (It's how I learned enough to be able to translate), therapy, loads of stuff. Nothing worked. But this woman at the grocery store, she bagged our food and every time, she would just talk and talk and talk to my son.  She connected with him.  She made him feel comfortable.  Even if we were in another line, she'd stop what she was doing and come over and say, "They're my family." and take over.  She'd bag our stuff and help push the cart out, all the time talking talking talking to my son.  Then one day, he talked back.  To her." 

It was the beginning of his return to the speaking world. 

"When we moved," she paused, "I'm ashamed to say I didn't get her address so we could keep in touch.  My son still remembers her and asks if we will ever see her again and I can't say that we will because I don't know."  She patted my son's head. 

"That's a great story." I started to say.

But she wasn't finished.  "I tell you this so you'll know that he'll turn out okay. You know, we all want our children to grow up to be successful, to be scientists or teachers or lawyers or elected officials.  We want to say they are valedictorians and scholars and athletes and wondrous in ways that the world can easily acknowledge and already has." 

She teared for a moment, "But this woman, who by the world's standards, would not amount to much, living in a group home, working as a grocery bagger, having Down Syndrome and married to a man with Down Syndrome, gave to my son the gift of accessibility, of speech."  She'd given him a gift that would serve him his whole life, alter his whole life in as radically positive a way as silence had before then in a negative manner.  She pointed to her now ten year old son sitting on the swings sandwiched between his two brothers and a friend.  They were laughing and joking about something.   This moment was due to all of those moments with a person who had Trisomy 21. 

The very necessary nature of everyone became evident.  I would not have heard this beautiful story but for Paul.  We would not have come to the park but for friends inviting us.  She would not have had this story to tell but for this woman building a bridge for her son from the silence to the rest of the world and this woman would not have been there for her son if some other woman, the mother of this woman had not been willing to have a child deemed less than perfect by the world.

Trisomy 21 means the person has one more chromosome than a non disabled person; a little extra as versus the rest of the world.   That little extra made her a bag checker but it also allowed her to speak openly to a sad little boy.   That little extra made her more willing to extend herself for someone other than herself.  Would that all of us would more willingly reach down and find that little extra to help build a bridge from a smaller world to a greater one of possibilities for someone.   We could all go on to do great things for someone's world that would be forever remembered.  Perhaps then, the world would be so overflowing with joy, so filled with freed voices, that it could never stop singing.