Oops! I finally missed a day. Just plum forgot about it. Funny, I remembered to post when we were sick, but I forgot on a lazy Friday evening.
My only excuse is that I was watching the Royals instead. After TV fails and radio fails and sleep fails, this was the first post-season game I was able to watch. Go Royals!
As penance, I give you the obligatory fall raking photo:
Thursday, October 23, 2014
Whew. Okay, I think we are all through with that particular wave of illness. Here's hoping for a few days of respite before the next one hits.
It occurred to me that I might not have given Christer full credit in Tuesday's post for all he does to help mitigate the worry -- both in his care of Max and in his care of me. And if you noticed that he was absent this round of sick-baby-care and subsequent worry, you would be right. That is because he was busy having dinner with this guy:
Um, yeah, I was not going to call him in the middle of meeting Neil DeGrass Tyson to say, "Your baby is sick, come home."
(Okay, maybe I did text him the first part, because I needed some sympathy, but I can totally handle a few hours of puke while Christer's off having an experience. Really.)
Truth is, the last couple of times Max was sick, Christer stepped up and dealt with most of the unpleasantness. Because I was too busy working myself into a worried tizzy to be much use. And when I do worry about the Big Future Worries, my fastest relief comes from the thought that I've got this guy with me every step of the way. Some days we have no idea where we're going, but at least we're in it together.
Tuesday, October 21, 2014
Max has a stomach bug this evening -- the kind that will probably interrupt my writing several times, the kind that all kids get. With it comes the parenting hassles -- the clean up, the likely sleepless night, the mental rescheduling of tomorrow's commitments. But with Max, there also comes the worry.
It's hard to ever look at an illness as just an illness. There are always a list of maybe-worries behind it, risk factors that come along with Down syndrome.
It's hard to know what to blame on the third 21st chromosome, and what to just chalk up to childhood. I've known plenty of kids who have dealt with ongoing minor illnesses, and I've watched their parents worry about them. I'm not sure how, or if, this is any different. I just know that it's hard.
This summer Max hit a growth spurt, grew two inches, and lost a pound. He also had a short string of stomach troubles. Not good, but not terribly unusual for an ever-more-active toddler. But our doctor was on top of things, and there were blood draws and changes in diet and extra weigh-ins (he's gaining again now, by the way). Thyroid? Celiac? Leukemia? Yes, I know that an upset stomach isn't a sign of leukemia, but shoot if that word doesn't pop into my mind every single time Max is sick. I worry that the whole family will get the bug, and then I turn around and worry that if we don't it might mean that something is wrong with Max. I worry with him that I am missing something, that if I could just put the pieces together his pain would go away.
On these worrying nights, it also hits me that it is likely Max will always have a guardian of some kind. Most days I can't wrap my mind around being responsible for two human beings until they turn 18. It is so hard, oh so hard, to make decisions for a baby and a child who can't explain their bodies in words. Is Toby sick enough to keep home from school? Is Max up again at night because of teething, or a sore throat, or a grumbling belly? How long will Christer and I be the ones making decisions for Max, and how many times will we make the wrong call.
So I write, and then I run back upstairs to cuddle and comfort. And I remember that worries are always worst in the dark.
Sleep well, little Max. Here's hoping that we're both feeling a little better come morning.
Monday, October 20, 2014
Last year, Christer & I had the chance to see Temple Grandin speak. The University's auditorium was packed, and it was a diverse audience. The usual crowd of college faculty & students were there (including more than a few students in the line to prove their attendance). Then there were people on the autism spectrum there, and their families. There were special education teachers and other professionals that work in the disability community. And then there was a whole separate set of folks who knew of Grandin from her work -- folks interested in animal behavior and agriculture. And then there were the animal activist types, curious about this woman who's work has led to more humane treatment of animals on their way to be slaughtered.
Temple Grandin owned that audience. Her presentation was unlike any other lecture I have ever attended. It was obvious that she is not a linear thinker -- I had to work hard to keep up with her tangents and loops. She was straightforward when describing the importance of her work, abrupt in answering questions, and blunt when scolding the tech booth for messing up her slides. And the audience was with her through it all -- sometimes in quiet concentration, sometimes in slightly uneasy laughter, sometimes with enthusiastic applause.
The audience was excited to see Temple Grandin, and was willing to enter her space in order to hear what she had to say. We were rewarded by seeing the topics of her talk through her eyes for a few moments. We were rewarded by seeing both the scientific accomplishments she has made, and the ways that her autism gave her a view of the world that made those accomplishments possible.
This is what I want for Max. Not from a packed auditorium, necessarily, but from his friends, and coworkers, and from the teller at the bank. I want people to be so genuinely interested in him that they are willing to take a step into his space in order to really hear what he has to say.
And, if I'm honest, this is also what I hope for myself. Look, it's tough really listening to people. I have hard enough time staying present with the folks closest to me in my life. When someone comes along who is challenging (a bully in the workplace, an over-dramatic friend, a five year old child living in my house...) it is easier to shut down, to walk away, to disengage. It's tempting, when someone doesn't act the way I would like them to, to ascribe my own reasons for their behavior instead of paying attention long enough to understand where they are coming from.
I'm going to mess this up along the way. I'm going to miss out on things that Max is trying to tell me. Heck, I've missed out on few key messages from both of my children already. But months after Temple Grandin's speech, the whole experience -- hearing her, watching the audience, and being a part of the audience -- it all sticks with me. There are models out there for how to connect across differences. There will be places where Max is appreciated and understood. And, if I'm lucky, I'll get to step inside his space, too.
Sunday, October 19, 2014
I think this might be the money shot -- both boys, in costume, smiling:
Toby wanted to be Pikachu, so we made Max a little jacket and hat so he could be Ash (pikachu's human handler). Pikachu got lots of love, especially from excited teenagers. I'm not sure anyone recognized Ash, though.
And after all the photos I forced on the boys, Toby was pleased to get a chance to take this one of the grown-ups.
Saturday, October 18, 2014
I tried to stand Max on the dance floor. He isn't standing on his own yet, but he's usually happy to put some weight on his feet if you'll keep him balanced. But not tonight. I'd put him down, and he'd swing his legs up to his ears. I tried several times, and then gave up and plopped him sitting on the floor. As soon as I let go, he started busting a move--and the telltale giggles of half a dozen onlookers let me know that the whole scene had an audience.
Max loves dancing right now. Toes thumping, arms waving, head bobbing, he's got his own set of moves. So we sat in the corner of the dance floor at the community's Halloween dance tonight. (His brother was on the other side of the room mixing up a batch of "zombie snot" courtesy of the science museum.)