Proud to Be the Crazy 'B' on the Bus: Just Say Something

the cashier: Diapers eh? Expensive. I bet you can't wait until they are out of those.

me: Yes, we'll be rich. Uh, I have a special needs kid, so it may take awhile.

Oh, that's hard.

Yes, mostly for him. He gets frustrated. But he's doing great. He's a great kid. He goes to the Amazing Autism Wunderskool.

Oh, autism.  Is he high or low functioning?

Well, those terms really aren't very accurate.

Oh?

No. For example, there are some autistics who will go to college, but may still have trouble putting their shoes on the correct foot. I have a friend like that. Does that make sense?

Yes. I get it.

My son has a lot of trouble with communication. He's non-verbal, so that makes it more challenging for him to communicate his wants and needs.

Huh. I have a neighbor. He's about 30. He lives with his parents. He's very severe; lots of grunts and sounds.

That sounds like my kid. I say "profound" instead of "severe."

Yeah, profound. Well he rides the same city bus I do, and there were some high school kids on the bus too, and they were teasing him. I told them to knock it off, and they did, for that ride. But the next time we were on the bus it happened again, so I stood up and yelled at them. I was probably a little more agitated than I had to be, but it made me so mad. They had no right. He's a great guy and they have no right. We go to the same pool, and you know, when he's there he is just so happy, splashing and laughing. He makes us all have a great time. Then those kids go and tease him, so you know what? I let 'em have it.

Wow, well thank you for standing up for him.

Well the bus driver thanked me too, but I didn't do it to get thanked. I just had to do it. It doesn't take much you know, it doesn't take much to just say something.

The bus driver told me that those kids call me 'the crazy old bitch' now. But I figure it's worth it. I'll wear that name like a badge of honor.

They don't tease that young man any more.

Snapshot of myBoy

Jake had a most successful ride on the boat this weekend. Happy and snuggled next to me, comfortable (enough) in a life jacket, and following all the rules. He had a smile on his face nearly the entire ride, and was very happy. It means there will be many beautiful summer days ahead cruising around the lake with family and friends. And we are thrilled any time we can add another fun activity that is multi-generational and/or multi-family. I was very relieved, and it got me thinking about how much Jake has grown and matured in the last six months. When I went to look through the posts here to read his last birthday post I realized I never actually posted it. So here is a snapshot of Jake from October 2011. 

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Jake turned eleven a few weeks ago, and before another moment goes by I want to remember a few moments of him at this age.

He has trouble sleeping. Often he will fall asleep early in the evening, then wake up from 9-12 and wander around his room, laughing, playing with toys. If you go to his room he will run to his bed and pull the covers up over himself, but tap the bed to encourage you to sit awhile. He still loves it when I sing to him, and he'll let me pet his hair again after many years of not being able to be still. He lets me share a pillow as he tries to fall asleep.

He's always loved the beach, then he loved the shoreline, and now we've added water. First he jumped into the deep end of a friend's pool (like all the other pre-teens there), then he went in the lake, then in another pool, and another. He's not as stable as he'd like to be, but he will hold hands without clenching me too tightly, and he loves it when all four of us were together splashing in the water.

He eats the rest of my lunch that is sitting on the counter, the minute he walks in the house after school. Then he waits at the counter tapping his fingers until I serve him another snack. He's rail-thin, and constantly moving. His hollow legs fill up with an hours-worth of snacks until I can bear no more and force him into the backyard to play. When I turn my back he walks around the kitchen until he finds the one food that was not "put away" -a pear. He takes a big bite, laughs and throws the pear onto the counter before slipping outside to play in the afternoon sun.

He can get in and out of most cars now by himself. Motor planning has never been easy, but he's got it now. And he can "scootch over" in a booth--if he wants to. The more his body cooperates, the more brainpower he can use on other things.

Given the chance, he will sneak down the stairs and crawl out the dog door. It's a game now for him to see how fast he can get out there..will we leave a gate open? will we leave the dog door unlocked? will the door to the hallway blow open in the breeze allowing for his escape? Once he gets out he yells and laughs very loudly so I will know he's there, but I know he's there. No matter how much I try, I am always 45 seconds behind him, which is just enough time to get outside and make mischief.

He greets guests now, and says goodbye too, in his own way.  A brief pass by and a gentle brush of his hand across your arm says hello, and more regularly he will walk you to the gate as you leave. It's possible he's just waiting for you to leave it open behind you, but he quite often will stand at the gate until your car drives away. He cares that you've been here.

On a day that's too hot or too cold, I ask him to settle in on the couch and watch a show-- and he does. He loves Mythbusters. I used to think it was fluke, but he will come in and sit on the couch if he hears the voices of Jamie and Adam. If the tele switches over to record a news program he leaps off the couch to find something else to do, or slides the remote control across the floor towards my feet.

He can take handful of cereal out of a box on the counter without spilling the entire box onto the floor; not every time, but most of the time. Regardless of his success rate, he's trying, and I think he sees the benefit; the more careful he is, the more independence he gains. And independence is what any eleven-year-old boy craves.

He's gained so much maturity in the last year. I really feel like he is taking the time to connect to us, which is probably because we are trying to do a better job of listening to him, however he is communicating. More than ever, we are offering him choices whenever we can, rather than assume what he wants, even if I know what the answer is probably going to be, because he deserves to have his opinion heard.

He is closer to being a young man than being my baby now, I know that, but I am thankful he still has some of that little boy sweetness left--just enough clings to his hair that I can remember his tiny baby face when I kiss him good night in the dark.

Remember Me

I just retold a story to a friend about a life-changing incident that happened to me when I was five years old. It is so vivid: my little blonde curly-headed self standing there in the driveway next to my blue bike with the pink flowered banana seat. We didn't have helmets then, and I had already shed my training wheels. It was a sunny afternoon, like almost any other afternoon in Southern California, but that one conversation shaped part of who I am permanently. It is something I think about almost every single day, sometimes multiple times in a day.

One conversation when I was that young and those words, and what I did, those words inform my character and actions every day. I am 40 now, with a lifetime of education, and conversation and yet ten minutes, 35 years ago changed me, and for the better. I could have learned the lesson another way, farther down the road, but it made life easier for me having that knowledge early-on. And I am so grateful.

I won't tell the whole story because I know who reads this blog, or might read this blog, and telling the story out loud, here, would change it, and it would read the wrong way, and sound self-aggrandizing, but there is something that struck me as I shared the story privately.

What will my children remember?

I realized that I can remember so many details about what happened, and what was said. I remember being flush with shame, and wanting to take back what I had done, even if no harm had come of it. And I got a good look at how a face crumples when someone is disappointed in me. Then I realized that my daughter is almost 6, and if I can remember being that age, she will too. And my son, well, he's eleven and a half, so it's pretty clear that when he writes his memoirs I am in trouble.

The words I say, my actions, my goals, and the way I celebrate or despair, my kids are watching all of it. What imprint am I making? Am I giving them the right lessons to lean upon when they're 40?  And what am I leaving behind after talking with friends over coffee? What do they recall later, after we have waved "goodbye" in the parking lot?

Luckily there is tomorrow, and probably many days after that to get this parenting thing, or some part of this thing right.  I will mess up.  I will be short-tempered, or hurry when we should have enjoyed the journey. I will never get it all mastered, but tomorrow I am going to do my best to make sure that whatever my children might recall of these years, some of it will be worth remembering.