With everybody in the house feeling not so great with a combination of being sick, tired, and/or pregnant, I can’t muster up enough brainpower to write something more thought-out and coherent, so here are my random musings from this weekend – at least still on topic.
I think I’ve discovered a new symbol for autism, at least for the toddler/early elementary crowd.
Thomas the Tank Engine must have been engineering specifically for little kids with autism. The J-Man couldn’t care less about Thomas, though we’re not much for following the crowd around here. But based on the data I’ve collected from being around other kids, I’d bet about 1/3 of them are Thomas fanatics. Thomas-based echolalia is a hoot.
I’m going to declare that this non-verbal child we know really did say “mmmm” on Friday when his mom walked into the room – a sound I’m pretty sure he doesn’t make normally (or ever perhaps) with any intentionality. The “mmmm” and the eye contact – another rarity – at least made me want to believe he was trying to say ‘mom’. Just the thought of that possibility made us all tear up, and if we were sure he’d done it, we’d still be crying. I want this to happen so badly for them.
This is the time of year when you scrounge all over the house for potential expenses you could (legally, of course) deduct from your taxes. Given all of our medical, therapy, equipment, and whatnot expenses – similar to what many of you all are dealing with too – I suspect we could qualify for medical deductions by exceeding that 7.5%-of-your-income rule, but, my God, what a pain in the butt it is to try to calculate that from the stack of insurance statements, invoices, and receipts that would probably reach my belly button when piled all together. On top of that, you have to figure out what’s an eligible expense and what isn’t. Argh!
I think about all my quirks and habits and behaviors and realize the J-Man and I have way more in common than chromosomes, blue eyes, and big ears.
I realized today just how much the J-Man has taken all the best parts of me that existed before he was born and helped me to carry them forward, all while teaching me how to leave the not-so-great stuff behind. My whole life story makes so much more sense now. He’s made me a much better person than I ever was before. How could I not be thankful for that? I wonder what people who haven’t seen me in years would think.
Saturday night, my brain had so much going on in there that I thought my head was going to explode. Then I thought, This is probably what it’s like for our kids most every minute of every day. Dear God, that’s hard to imagine. It made me want to cry for him.
I used to worry about everything, particularly in anticipation of events or major changes that may – or may not – happen in the future. And I used to worry about worrying about those things. I’ve noticed I do that far, far less now. We’re so in the moment all the time around here. I used to be completely freaked out by this – practically addicted to worry I guess – but now I realize more and more what a gift this can be. “We’ll cross whatever bridge shows up when we get there,” has become more and more my philosophy. Three years ago, that never would have crossed my mind as an option.
When J-Man enters a room with people we don’t know, they warm to him immediately. It’s like he can cheer up anyone’s day. What a gift that is! It makes me so proud of him that I can hardly stand myself.
The autistic kids I know seem innately incapable of deceit. Sneaky? Sure. But they seem totally unable to live outside the bounds of truth. I think that’s a gift too.
I read some of the things I wrote ‘pre-autism’ (more accurately, ‘pre-us-knowing-about-autism’) and then read what I write now, and it’s sometimes like reading something written by a stranger. But I read what I’ve written lately and realize how much better everything is now.
If people would stop talking about our kids using words like ‘broken’, that would be great, thanks.
We tend to have too low of expectations of our kids. Whenever we’ve set the bar high, the J-Man surprises us by jumping way over it. It’s almost like we don’t know just how high we can set it.
I’m trying to develop greater patience with the people who offer us advice even though all they know about autism is what they see on TV or what their cousin’s next door neighbor said because that neighbor’s daughter-in-law has an autistic child. Most of them are being kind, and I need to recognize and honor that. I also see it as a teachable moment to communicate a positive message about autism. I think in a few months I may very well have the equivalent of an ‘elevator speech’ about autism worked out.
Speaking of which, less apocalyptic messages about autism are slowly creeping their way into the media. Thank God.
The Down Syndrome organizations are so far out in front of us that they make us look like rank amateurs sometimes.
Last night’s Super Bowl was great, but Jason McElwain appearing in the Gatorade commercial is still making me feel proud. I know he totally didn’t start out imagining all this would happen this way, but he’s now become both a role model and a symbol – a walking positive message about autism. “Give it your all, and never give up.” Damn straight, J-Mac. I think I’m going to add to my “To Do In My Lifetime” list getting my butt kicked by him in a pickup basketball game.
And I’m glad my son has such heroes to look up to.