Just got back from dropping Ryan off at school in his jammies. He's off to Polar Express with his kindergarten class. It's all he could talk about for days! He wanted me to go, but y'know... duty calls with the whole two other little kids thing. He bounded out of the van, bubbling over with excitement at the thought of seeing Santa at the end of the trip, and getting to talk to his friends the whole way to the train.
You didn't buy that, did you.
The truth is, the same child who loves trains so much we are covered in Thomas, and every time we visit his grandparents in the city we have to ride the commuter train, even to go no where but the end of the line. He refused to go to school in his jammies, emphatically replying "NO!" when I asked if he'd like to wear them to school. And yes, I asked as part of the social story I talked him through a ton last night and this morning. He was confused and a bit upset... I was having a hard time keeping him together as we got ready for school. He's used to wearing jeans and a long-sleeve shirt this time of year, but I at least wanted him to sorta be in comfy clothes, so he wore his school sweatshirt and sweatpants. The outfit was really more to help him, just in case he noticed the other kids were all in their pajamas and felt out of place, as part of the whole Polar Express thing. Not that he'd ever tell me.
The truth is that I would love to go on this trip. The problem, other than the care of the two littles, is that when I go on a trip my presence throws Ryan off so badly that he can't function. The first and last time I tried to help out on a trip, he screamed the whole day. Yes, the WHOLE day.
So as I drove him to school, I repeated over and over "I stay with my teacher." He repeated it back, as if to say "Mom, I'm going to have fun. Just let me go!" The only way he'd expressed his excitement was to say "You WILL go on the train!" followed by his happy hum-and-stim combo. Peeling him out of the van in the nicest way possible, the lady who usually helps him out every morning said "Good morning, Ryan! Ms. M is going with you today... let's go find her." So simple. Just finding conversation with my boy. A way to show him she sees Ryan, not a diagnosis or a warm body. But to me, it's everything today.
I knew we'd talked about his having an aid for trips. But the whole way to school I was panicking. Driving around the traffic tree (which is not near as cute as it sounds) I told myself that it wasn't too late to keep him home. I could easily see him stimming on a train wheel as it pulled away and... well, losing him. It's almost happened at the "people train" when we took him for a ride. It can happen in a heartbeat. "I could text his teacher, telling her that he's with me... she'd understand" I told myself. But those few words the car-rider helper told me made a world of difference.
I pulled away from the school and down the rest of the tree with tears streaming down my face. If you know me in real life, you know that as of late I practically can't hear a sleighbell without tearing up. A children's choir in the mall singing "Jingle Bells" and I'm gone. But there was something different about this. I could choose at this moment to let the anger for the things that are hard for Ryan and all other kids with ASD's take a bitter hold in my heart. That's the easiest thing to do at the start, but it finishes with a cold, hard, stale heart. Or at the least unhappiness... which again is just not acceptable.
Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go. Joshua 1:9
See? Being frozen by fear is not acceptable. I have done my best as Ryan's mother to be a good steward of him... that is, I've done all in my power to keep him safe and put things in place to carry that on when I'm not around. So the hard part is pushing him out of the van into the capable hands of another, knowing that he's going to have wide-eyed, stimmy, hummy wonder all day long. The bus ride to the train alone is enough to send him over the euphoric edge.
As I left the school parking lot, I stopped to let a little pre-k looking boy cross in front of me, with his mom. He was all decked out in his flannel PJ's, complete with blue furry-lined hat... you know, the kind with the cute ear flaps. This is where I'm tempted by jealousy. Anger. Frustration that my big boy couldn't stand the different-ness of wearing his pajamas to school. His mama gets to go and see his wide-eyed wonder. All I can do is imagine. I notice that she's flustered about something, just doesn't have a countenance that screams "yay, I'm about to go have a great day". It's then that I'm tempted to go to everyone's favorite world-soapbox (you know, Facebook) and place a well-meant (yeah right) warning about how she should all just cheer up and shut up about whatever is bothering her because you know what? She gets to do something I don't. And dangit, she should be grateful. *insert folded-arm-huff and pout*.
But the truth is, I have no idea what she's been through this morning, much less through her whole life. I have no idea what her name is, much less what things have shaped her heart... or torn it to shreds. I don't know. Even if I did know her, I still can't know these things. Even if I THINK I know, comparing her experiences and hurts to my own is dangerous. No good can come of it. As Jess from A Diary of A Mom tweeted recently, "#youmightbeanautismparentif you've learned that human suffering is not a competitive sport." And it's not. But too often, we think we're doing good by cramming our judgment down others' throats... and tragically, too often those throats are already raw and bloody from swallowing their own problems. Can you say "not helping?" And even if I don't say anything out loud, letting anger and bitterness grow in my heart is not helping me, my kids, my husband, or anyone.
What do I want to choose to do instead? Pray my pain, my fear, my hurt... and remember that I get cool stuff others don't. For example, every day for three and a half years I've picked up Ryan and asked him if he had a good day, what he did at school, and usually I get no answer. Tuesday, he clambored into the van and I threw out a "did you have a great day Ryan?"
And you know what?
He said "Oh YES!"
Who else can be so excited over two simple words? Not that many of us. It's hard. There's very little of Autism that isn't... no matter what brand you have. Challenges are challenges. Whether your child has special needs, medical needs, or not you have challenges. Mine are mine, yours are yours. Oh, it's hard all right... but we can make it harder by adding bitterness and anger to the mix by insisting on playing the one-up game. I know it can sound trite, but let's be kind to others and focus on what we HAVE.
And I don't know about you, but I have a LOT.
Thanks be to God, the giver of all good things!