Sunday, August 31, 2014
It was tempting to take a picture of Sky and Pink in their tennis gear picking up tennis balls; I could've posted a picture of it with a caption like "Ready to go pro any minute now!"
But, I didn't.
Truth be told, Sky verged on a meltdown most of the lesson, first because he didn't want Pink P to be able to play, too. Then because he couldn't hit the ball well. Then because he didn't like the tone of voice with which I was instructing him, and finally because I ended our lesson after about 45 minutes (of him complaining). Pink, meanwhile, cried because I didn't bring enough water. Or snacks. Or juice. And, Stow? Well, Stow "explored" his environment by running every which way all at once with a cane-wielding Ren left hopelessly in his dust. The awesome meal cost a lot of money and included antsy kids passing the baton to and from the bathroom. Plus, everyone was still hungry when we got home. Fifteen minutes after walking in the door, I was left to bathe and get all three kids to bed when Ren headed off to a glamorous (not) sleep study where they would determine just how bad his sleep apnea is and how much it impacts his less-than-perfect heart.
The day wasn't terrible. But it certainly wasn't brag worthy.
Have you seen this video about the truth and lies of social media? If not, you should. It's a good reminder of how we are all constructing these social media lives of ours and how we should think a little more about what we are doing. We all have lies and half truths we tell each other online. I guess that's what makes social media simultaneously fascinating and terrifying.
I'm not quite ready to kick social media to the curb quite yet, though. Used right, it can help us make meaningful and real connections. It teaches us. It inspires us. It allows us to change the world, even in our own little ways -- like the YouTube clip of my high school friend's son Jack singing "Roar" or another high school friend's website about his son's courageous battle against leukemia. These are what keep me on Facebook--the stories that move me and remind me that even though my life doesn't always look that great, it's pretty darn good just the same.
We are, all of us, making our way through this world the best we know how. Maybe instead of using social media as a place where we brag about our accomplishments and show off our lives, we can use it to become the village it takes to raise our children. That's my goal, anyway, that somehow some of my story will help inspire you to live yours fully--even when it's not pretty.
For the record, I have every intention of taking Sky out to play tennis again tomorrow. He'll probably yell and hit balls over the fence and into the overgrowth just beyond. Pink will probably cry about how unfair I am, and Stow will most certainly eat something not meant to be eaten and break something not meant to be broken. In other words, I plan to keep enjoying this crazy, mixed-up life of mine--after all, it's certainly better than perfect.
Friday, August 22, 2014
When Sky's principal called me just 90 minutes into the new school year, it didn't help my nerves. I mean, I was already a bit anxious for the kids --getting ready for a new school year takes mental, physical, and social work (as you probably remember from past posts here, here, and here). The new school supplies, shoes, and haircuts are the easy part.
For Pink, a new school year means contacting the principal who puts me in touch with her new teacher so we can talk at length about the various contingencies necessary for avoiding unwanted peanut exposure in the classroom. It also means making a special trip to meet the school nurse to make sure she has all the appropriate paperwork and protocols in place. And, of course, these conversations force me to think realistically about all that could possibly go wrong with my severely allergic child in a school full of peanut butter eaters (okay, so they don't ALL eat peanut butter, but it sure feels like it when I start to think about what could happen if someone touches my kid with peanut butter on his/her hands). In case you're wondering, this is why I maintain a healthy sense of denial about Pink's allergies (while also keeping an epipen handy, of course.) The start of school means working through all of my anxieties about Pink's allergies. I get that forcing kids to eat their peanut butter at home is inconvenient and unfair, but it sure would help lower my stress level if they did.
Meanwhile, for Sky preparing for the new school year is an ongoing process. Before the last school year ended, Sky worked through social stories with his speech therapist and visited his fourth-grade school building with a group of his peers. For weeks, we've talked about the new school building, his new teachers, the new principal, and his new bus route. We've brainstormed about what to do if kids are mean or call him weird. All summer (except for when we were in Japan), Sky had weekly hippotherapy and behavioral therapy sessions. Sky works ceaselessly to fit himself into the neurotypical world around him; sometimes his hard work pays off, and sometimes it doesn't.
Every year, in the days before school starts, we set time aside for me and Sky to meet with Sky's new teacher. For a kid with difficulties processing social cues and transitioning into new environments, meeting with the teacher and talking about his concerns ahead of time always helps. It's different with each teacher, of course, but this year, Sky's new teacher met with him for nearly an hour, taking a break from her final preparations to tell him about the classroom, to answer his questions, and to help him start to understand the routines of fourth grade. We also established the best means of home-school communication and discussed how we would handle any concerns about his IEP, incidents of bullying, or any other issue that might arise (and believe me when I tell you there's no limit to the kinds of "issues" Sky can have in school). Sky left that meeting feeling excited and ready for fourth grade (and I left wondering how many other parents spend so much time with their kids' teachers before the first bell on the first day has even had a chance to ring).
Then, there's Stow.
Believe it or not, the baby started preschool--the early childhood program at the local elementary school to be precise. I actually thought I'd handle this transition fine. I mean, Stow has been receiving therapies since he was 1, and the early childhood program in our town is known to be the best around. All of our transition and IEP meetings went great, and I am sure he's where he needs to be. In other words, I didn't do much of anything to prepare Stow for the first day (except get his haircut and buy him some shoes) because I knew he was ready.
But, I didn't really realize that I wasn't.
Not long after Sky and Pink's bus pulled away, Stow's little preschool one came. He climbed right on, plopped down in a seat and waited patiently for the driver to click his seat belt into place. I don't know if he realized he was going alone (though I guess he probably did since he's seen his big brother and sister get on the bus hundreds of times), but I do know that he was grinning ear to ear as the bus pulled away.
And, much to my surprise, I totally lost it. I am so NOT sentimental. I have no idea why I cried. I suppose it had something to do with the expression of eager anticipation on Stow's face as the bus drove away. My realization that my little guy who doesn't talk a lot was going off into the great big world on his own didn't help. Then, there was the realization that my baby isn't really a baby any more, and there's not a darn thing I can do to get a single minute back. Not one.
See, my kids? My kids, they keep going out into the world. They don't let the allergies or the autism or the anxieties hold them back. They go out into the world dancing, laughing, and making the absolute most out of it. Letting them find their own way (without letting the fear of all that could go wrong consume me) is not easy, but I know it's my job to let them go. I'm still figuring out how to do that without it breaking a little piece of my heart every time they go. All I can do, really, is believe things are going to be okay, even if there is a fender bender or two along the way.
Friday, August 15, 2014
Besides the punctuation and grammar issues, what bugged me about this is that I didn't seem to be getting through to them. Autism (with its mysteriously capitalized A) doesn't always look like you expect, and "bad" behavior can mean a lot of different things. Believe me when I tell you guys that THIS is the biggest hurdle when you have a kid like Sky. People always think he's doing something to be a jerk. Occasionally he is, but most of the time he's not. My points about the need to develop a means of communication and about the importance of teacher training didn't get far either.
I started to consider the possibility that this would be one of those times when advocacy failed, but instead of throwing my hands up in the air and pulling Sky out of the class,** I decided to write back.
Then, just before I shut down my computer, I got this: