what the bus driver doesn't see.

My mother drives a special needs school bus (the short bus) in Utah.  To illustrate how lucky I am, my mom related to me a story about a little boy on her bus with autism.  Christopher might be autistic, but for the most part, I have it pretty good. How when her bus route has been changed and they don't drive the exact same route making the exact same turns, he will have a meltdown.  But the part I think about often is how every morning, that little boy is out there waiting for the bus in the exact same spot.   His mother isn't allowed to stand out there with him.   No good byes, no "I love yous".  I can't remember if the mother calls out from the doorway where she stands "I love you! Have a good day!" or if she simply waves to my mom as the doors close and she drives off.  After school, my mom will find that other mother standing at the end of the driveway waiting for the bus each and every day. The little boy will get off the bus, and without even glancing at his mom, walk into the house.  My mom's heart aches for this mom. 

Lack of affection can be one of the signs of autism, but just like in regular kids, no two kids are alike.

I think about this other mother every morning and night as the bus appears at the end of our driveway, and I wonder what the bus drivers think during those few seconds that they are stopped at my house.  Christopher runs out to the bus every morning without even looking back as I call out "Bye Christopher!  I love you! Have a good day!".  The bus driver and I wave to each other, then the doors close and the bus takes off.

Later that day, the scene is similar.  I come out to meet the bus, Christopher jumps off, and my greetings of "Hi sweetie, how was your day?"  are barely heard as he runs past me into the house.

But what the bus driver doesn't see is a completely different situation.  From the earliest days of his life, when he was a teeny little bean in the NICU, there was only one word to describe him- Sweet.  I thought it was just me, but when a nurse said those words, a nurse who takes care of babies every day, "He's just so sweet." I knew he must be special. 

Every morning I am woken to a sweet little boy crawling in bed with me with only minutes to spare before it's time to get up.  I'm his favorite person to snuggle next to on the couch as we have our morning scripture study.  Sometimes we linger a little too long on the couch as he is curled up next to me, letting me rub his back or stroke his hair.

I agree that "hi's" and "good-byes" aren't his thing.  He is so excited to go to school he runs out the door without looking back.  And when he gets home, he needs to race to the back door to watch as his bus drives away.  (there's a great view of a road the bus takes from our back door)

No, he doesn't say the cute little expressions of love that kids his age are known for.  Awhile ago another mother posted on facebook how her little boy said he "loved her more than pizza". I doubt I will be posting anything as cute and clever as that on facebook anytime soon. But Christopher's language skills are still pretty crude, he speaks in the third person much of the time and leaves out all the little details that make sentences grammatically correct.  "Christopher want pizza."  "Christopher play wii?" "I no want to."

But I do get hugs and kisses whenever I ask, and even sponateously from time to time.

And at night, after the two of us put the other kids to bed, we will cuddle up on the couch together, under a big fuzzy brown blanket, and he will fall asleep as I catch up on my DVR'd shows.

So, I often think about this other mother.  Does she get moments in her day where she knows her little boy loves her?  Where she asks no one to be sorry for her because her boy isn't as emotionally distant as he might seem from the driver's seat of a school bus?  Or does her heart break because he might never return the love she shows daily?

rainbows

When Madison was little, she once told me that her favorite colors were "pink, and red, and purple, and blue, and rainbow, and sparkly." I know she now knows that "rainbow and sparkly" aren't technically items you include on a "favorite colors" list, but she still likes them. I currently wear a friendship bracelet that she picked out and Disney World last October with a rainbow string woven through it. Hers fell off quite awhile ago, and I think mine might be following pretty soon. Anyway, she's all girl. Unicorns, and horses, and shopping, and pink sparkly things, and rainbows.

I've recently come to (somewhat- I'm still figuring things out) understand the influence of "the rainbow" in my boys' lives as well. It started with Zach. When he was little, he was anti-social, ridiculously shy, couldn't talk, wouldn't make eye-contact, difficult to potty train, ate only a half a dozen things, refused to wear long pants, and had other issues. I had him checked out by specialists to see what services we could get to help him. That's the first time someone mentioned "the rainbow."

"Autism is a spectrum disorder." (to say that correctly, you need to make a rainbow with your hands while saying "spectrum disorder". ) Meaning that every kid is different, has different symptoms, etc. Fortunately, he did get the help he needed, and "the rainbow" is pretty much a thing of the past. (knock on wood.)

He still has some little issues. Mostly with food. Weirdest of all I think is that he won't eat cold cereal. I mean, come on, who doesn't like cold cereal? With a whole stinking aisle at every grocery store dedicated to the 14 thousand kinds, even the pickiest of eaters is sure to find something they like. And it doesn't matter if it's dry or with milk added. He won't touch the stuff. (and he likes milk.) Also, he has anxiety issues, but as long as he knows what he can expect with any given situation, he does much better. But I'll take it.  I used to have so many worries and fears.  I used to cry because I'd dream he'd say "mommy" and then wake up to realize I might never hear those two little syllables.  An aversion to cold cereal is nothing, nothing, in comparison.

Next up is Christopher. He was formally diagnosed with autism last Friday. At least now I have something to blame the lack of toilet training on besides bad parenting. Anyway, a bunch of specialists and child psychologists, and autism experts got together, and sent me home stuff to fill out, and everything was coming up rainbows.

The good news is that they have a special kindergarten for autistic kids that caters to their needs and learning abilities and speed, and they can do that because there are only 7-8 kids in each class with 3-4 teachers and helpers trained in autism. He'll be included in a regular class as well as much as possible, with a special helper along to make sure he doesn't get lost in the shuffle. These days with regular kindergarten classes having ratios of 25 kids to a teacher (it could be more or less, I'm just guessing) I'm choosing to look at Christopher's 2 to 1 ratio like I hit the jackpot. And it's free.

And the wild card is Nick. Short story long, my mom drives a short bus (special needs) up in Utah for the school district up there. Given the nature of her riders, she has a bus helper that she's friends with and talks to. The bus helper's husband just happens to work with high-school aged kids with Aspergers. His job is to help those kids remember their stuff. Pencils, homework, turning stuff in...

Sound familiar? All those things that Nick has trouble with, despite the fact that we've been medicating him for a couple years now. So at our last appointment with the psychologist doctor who's been working with Nick, I brought that up. She pulled out a standard questionnaire to help diagnose Aspergers. Sure enough, Nick's score was high enough to make it a real possibility. Not conclusive, but after reading about some of the symptoms (flapping- which to be fair he hardly does anymore) I have to think it makes sense.

Now it's just figuring out what to do with that info. His counselor at the jr. high is on maternity leave for the rest of the year, and the 7th grade one is carrying the load for the whole school. She told me that there were a few hoops to jump through, and by the time we did that, the school year would almost be over, and I'd have to do it all again next year anyway. Plus, it seems to be they just don't know what to do with him anyway. The doctor suggests getting him a monitor, someone who keeps an eye on him at school, but they just don't have anything like that in place (yet?).

Normally I try and shy away from labeling my kids, I fought the whole ADD thing with Nick for years, (which btw, now we don't know if Nick was just misdiagnosed, or if he has both, the medicine seems to help only marginally, but since he is on the brink of failing a couple of classes, we are reluctant to pull the rug out from under him ) but if labeling helps, maybe that's the answer?