All of my plans, compromised...

My heart races almost all the time. My mouth is dry. My hands shake way too much. I jump out of my seat when the phone rings. All this can mean only one thing.

It's summertime.

School has been out now for one week, and it has been one of the worst weeks in a long time...we are all exhausted from the strain of trying to get Stephen through the incredibly hard (and unfair!) transition of his beloved school days into days of endless "free" time. The poor kid...

And poor us, too. The phrase I coined (or at least I think I did), "chronic sorrow," has been ever-present on my mind lately. [nope - upon researching, it turns out that: "Chronic Sorrow is a term coined by sociologist Simon Olshanshy to describe the long-term reaction of parents who have a child with a disability." So I guess I READ it.] Over and over my heart breaks, even when I'm pretty sure there are no intact pieces left. David, Kerry and I have that perpetual look of strain, Stephen's wires are so sensitive to change that he is not very fun to be around, and sometimes it's hard to see a positive side to much of anything.

Except...there are some positives, if I shuck off my shroud of cynicism (say that five times fast) just for a moment or two. We're in a house now - let's not talk about the lack of a convenient pool right now, we're being POSITIVE. We have A/C that works like a charm - I'm remembering the days of last summer when we were living in a hellish sauna. Kerry is busy and has lots of plans for summer. He's grown and changed and matured, and is still absolutely the coolest kid I know. The fact that he is mine makes absolutely no difference here. (smile)

And, let's see...I've got a good job for which I am alternately grateful for and frustrated with, but again, the POSITIVE is my focus right now.

Okay, I can't do it anymore. It's just damned hard to do this, to live this life of constant stress and worry and unpredictability. Talk about waiting for the shoe to drop - we wait for the 2 ton crate of shoes to come crashing down. Even when things are calm, it's hard to relax, because all that can change in a split second...say, if a DVD that has been well-loved (read: lined up on the floor, used as a mirror for making funny faces while watching another DVD, scraped across the foot Stephen props up as he's watching) won't play anymore, or, will play, but one of the sidebar/bonus features/extra games parts of the menu won't work...or won't fast-forward at the speed desired, all hell breaks loose.

It may seem that I'm being overly tedious with my explanations here, but to understand our life you must understand the minutiae of caring for a kid like Stephen. When things don't work as his poor little mind expects them to - the internet acts fluky, or that obscure menu on "The Trumpet of the Swan" DVD doesn't respond, or you don't take him to McDonald's RIGHT NOW - you are likely to be subjected to screeching that would put the Jurassic Park velociraptors to shame, and, sometimes, a hearty tug of your locks, if your hair is long enough to grab...or endless endless endless endless (get the picture?) repetition... "Friesburgerdonaldshungry..." ad nauseum, until you want to hop in your fighter plane and bomb every single fast food franchise in a 20 mile radius...

Well, I can dream.

So in the midst of all this, I have to head out to work - leaving David or my mother to deal with the LOOOOONG days of this transition time of summer. It's a tough gig, and I imagine nobody really envies them the job. Everything requires planning, and it's just tiring to body and soul. I confess, with pre-emptive apologies to friends who may read this, that I am nearly eaten up with jealousy toward people whose lives are "normal" - people who can take impromptu trips to the beach, or impromptu trips anywhere, for that matter; people who don't have to make sure they've created a picture symbol just so they can go by a store they've never been to before; people to whom summer is a time of vacation, freedom, days spent in lazy leisure activity.

I envy people who can explain to their children things like:

"That DVD is broken because you haven't taken care of it."

"We can't get a hamburger at 6:45 a.m."

"School is out - you have a break until August!" (Saints preserve us...)

"Honey, you cut your toe on that poolside chair...let Mama clean it and put on a band-aid." I have to stop and note this particular scenario for posterity. On our first trip to the pool that we found to join, Stephen bumped his toe as we were leaving. I didn't know he was cut, because he didn't whimper or anything. No, I noticed it only when I realized one of us was leaving a bloody footprint, and it wasn't me. I grabbed a paper towel and tried to look at his foot, but to no avail. I managed to wrap a piece around his toe and put his shoe on for the trip home. We got home and Stephen kicked off his shoes and climbed straight into our bed...in between one of my two "good" sets of 100% cotton sheets...

His toe bled. Boy, did it bleed. It wasn't a deep cut, just "skinned," as my mother would say. But here's the kicker - every time it quit? He scratched at it. He'd stick his foot up toward me and say, "Tickles please" which basically meant..."Fix this mom - but use your magical healing powers because you ain't gettin' near me with that scary looking bandaid, and you can FORGET putting some antiseptic or liquid bandage on..."

Again, a tedious explanation, but it was at that point that I mentally and emotionally shattered a bit more. I can't wrap the kid in a bubble - he's going to get cuts and scrapes, and I can't even do Basic Mom First Aid. It's a helpless feeling. I sat and watched spots appear on my pale green sheets as he wriggled around, pausing occasionally to give his toe a big scratch, all the while he's saying, "Noooo, noo...nossir." Because that's what I say in an attempt to get him to stop doing something he shouldn't...and you can see how well it's working.

At one point later on, I caught him off-guard, crawled under the table where he was watching a DVD, and managed to finesse a tiny bandaid in between two small toes...all the while smiling and patting him. HA! He stopped abruptly, gave me a glare, stuck his foot in my face, and said, "No no no no..." and started tugging. "Oh, sweetie, it'll help your boo-boo!"

"NO NO NO NO NOOOOOOOOOOOOOOOOOOO!" in crescendo.

Bandaid removed. Blood on the kitchen floor. It finally stopped and I've snuck bandages on after he was asleep at night. Maybe he'll let it heal. Maybe.

It goes against my very nature to be unable to help, to fix things. I'm a fixer. I'm a nurturer, sometimes to a fault. Sometimes I need to learn to step back and just listen...but at times like the cut toe incident, or a thousand other "little" things, just to be able to communicate, to kiss and make better, to comfort, would make all the difference in the world.

And so the maelstrom of my emotions whirls out of control much of the time. I am as nervous and jumpy as the proverbial cat in the room full of rocking chairs, and it affects everything...work, home, the sad state of my wannabe-artist/writer soul, my ability to smile, to live, to love... I become comatose at night, sleeping deeply and waking early with my mind going double-time immediately upon becoming conscious. I don't know what the future holds, and damn it, it drives me batty (battier). I love my son and am completely and utterly frustrated by his disorder simultaneously. I am grateful for what I've got, and pissed off at what I don't have, all at the same time. I know it could be worse...but then, there are the dark, dark moments of my soul when it's really hard to see that it could be worse, in fact it feels like the very worst it could be, just then. I have tasted, over and over, the bitterness of life. It's a taste that stays with me, never quite going away in spite of the joys and sweetnesses I certainly experience. There are people in my life who love me and I'm grateful for them, more grateful than can be expressed here. But oh...the autism! It pervades all, it entwines itself into every waking moment, it rules our world and I hate it with an intense passion I would have once thought impossible to feel.

I look into the mysterious moss green eyes of my son - eyes that rarely contain the spark of connection, eyes that dance with humor I don't understand, eyes that cry at unknown fears, eyes that see things I cannot see or comprehend - and I am overcome with protectiveness, with disappointment, with fear, with joy. It's a complicated mix and one thing can never be separated from the other. I have been bombarded over the years with opinions of certain pundits of the autism world who think that I do my son a disservice by not "accepting" his autism as part of who he is. Well, yes, I suppose that there is a level of acceptance, or really, resignation - if by that you mean knowing this isn't going away anytime soon or being in denial - but acceptance in some sense of gladly welcoming his autism? No way in hell. I've said many times that if hacking off my right arm with a rusty pocketknife would cure autism, I would do it. Dramatic? Yes, certainly, but that is the level to which I do NOT accept autism and will fight against its insidious effects until I have no more strength.

Hopefully in the next week or so we will start to incorporate some summer services and outings for Stephen, and will hope with all our might that he accepts these as part of a routine. I must plan out these months as carefully as if I worked for the Pentagon and lives depended on said plans...really, they do. The future hangs out there, taunting me with a singsongy "I know something you don't know"...and the uncertainty of it could drive me completely over the edge if I let it. For now, I'll think about today, and this weekend, and next week...and hope against hope that we can overpower the horrors of summertime+autism.

It is not a good combination.

*The title of this post is borrowed from the song "Arriving Somewhere But Not Here" by Porcupine Tree. An excerpt of lyrics:

All my designs, simplified
And all of my plans, compromised
All of my dreams, sacrificed

Ever had the feeling you've been here before?
Drinking down the poison the way you were taught
Every thought from here on in your life begins
And all you knew was wrong?

It's a great song found on PT's Deadwing album, if you're interested.