Autism Watch: 2007

A Day in the Life: 2009

Posted on: April 22, 2010

I did a day in the life a couple of years ago. Things have drastically changed since then, and not just with the move and new lifestyle, but with BB aka Barnacle Boy. I’ll chronicle it, knowing that when I do it again in another year or two, things will again be new and improved. It also gives a birds-eye view of what a day dealing with high-functioning autism is like, since the TV shows and people they interview on the news really don’t necessarily do it justice. (But I do have to say, NBC’s “Parenthood” does a pretty darn good job.)

Each day is unique. You never know what you’re going to get. You go to bed each night, exhausted every other parent, and hope tomorrow is a good day. You don’t define “good,” because good could just mean “better.” It could mean better than today, better than yesterday, or just better than the norm. And the norm is highly subjective.

I’ve chosen Tuesday to dissect. No particular reason other than I can remember it sufficiently and it’s recent enough to have validity. Dh wakes up at 6:15 and showers; BB has been sleeping on a daybed in our room (in our temporary living quarters) and hears Dh showering, yet stays in bed until Dh nudges him with an early morning cuddle that it’s time to get up. BB groans. “I don’t want to.” Yet, buddy, you are. Out of bed he goes, and he immediately asks if he can take a shower. Sure thing, hop on in, your clothes will be waiting for you when you get out. Six minutes later, he appears next to my side of the bed, dripping, wrapped in a towel and waiting for me to dry him. I’m bleary-eyed, I don’t sleep well and it was just another night of not getting enough sleep. I dry him, I help him get dressed, and I head out to grab my half-caff coffee. It’s not enough caffeine, but the real stuff makes me uber-jittery. I drink it sometimes, but if I do it daily, I am a headachy, jittery mess, so I do it here and there.

As Dh is making him scrambled eggs, to be served with a banana, BB is talking about the protein and asking for his chocolate milk. He’s on a fitness kick aka new obsession, and wants to lift weights, eat properly and do lunges/squats to get rid of non-existent leg fat. I make his lunch — a turkey sandwich with only mustard, some Ritz crackers, and a few chocolate chip cookies. He likes extras to share with his friends, and if that helps him socialize, I’ll give him the whole box. BB starts to realize that he still doesn’t want to go to school, and he begins to yell about how much his throat hurts. (He missed a day last week because his burping stim had started to cause acid to come back into his mouth, and it was painful.) No go, Dude, that was last week, this is now and now you’re going to school. BB’s uncle has to load the cousin, my nephew, into the car on his own while Dh tries to talk BB into going, so he doesn’t have to carry him to the car like he did one day last week. He fights, yells and gets quite the attitude going, sort of a cross between a real meltdown and a quasi-meltdown, and off they finally go. I breathe a sigh of relief, and start working. (Still working from home here in the new house.)

Several hours later, dh and I dress to go to the IEP. When I say dress, I use that term very loosely. Until last night, we didn’t all have access to our clothing, and we were still re-wearing the same outfits that got us through the week-long drive and the first week of settling in. Clothes that were supposed to last us three weeks were getting boring, and we had nothing appropriate for a meeting. Jeans it was. We did get a chance to mention during our meeting why we were so casually dressed, but it didn’t seem to be an issue. IEP went well – we didn’t have to ask or beg for anything, which is a successful IEP in our eyes, and we left feeling reaffirmed that the move was indeed, again, a good choice. Social skills is at the top of the list, and the school recognizes the importance of that. I didn’t have to open my notebook of years’ worth of IEPs, articles, lists, assessments…not even once. We left happy, and we returned home so I could get back to work. Dh is mid-job-hunt, and hopefully will have something soon, after voluntarily leaving his good job of 20 years.

Dh left to go get BB, and when he returned, BB was happy. Smiling. Talking about a potential girlfriend, whose name he couldn’t remember. Ah, young love. He got a big cup of chocolate milk and sat down to do his homework. Ten minutes later, he was off. “Mom, I’m done! Going to go play with my dog now.” (His service dog has assimilated out here quite nicely, and loves to run in the big grassy fields.) I look at his homework, too late, and see where he’s written, “Sorry, can’t do this. No calc. 😦 ”  Really?? I approach him. BB, you can’t just write a note. You have to try. Here, let’s see what we can do. Instead, meltdown. Big time. Door slams. He yells. I am the world’s worst mother. Okay, BB, no laptop again today. FINE, Mom. You’re the laziest mother too! Well, okay, now I’m taking your DSi XL, his newest and other most important possession. (I did have to show dh where I hid it, in case I forgot, which wouldn’t be the first time.) Dh is out on an errand, and when he returns, we approach BB together. It’s not okay, BB, to yell at your mom, slam a door, say mean things and refuse to do your homework. We get it all worked out, and he heads out to the pool. He just this weekend learned how to fully swim on his own, and he was eager to do it more. Problem is, it’s only 70 or so here. He realizes this, spends 20 minutes in the pool, and decides he’s had enough. Good deal, it’s cold out here supervising you. Dh comes back from his errand, and decides a quick dip in the pool is a good idea. BB notices he’ll have company IN the pool, not just someone watching him, and jumps back in, shivering before he gets water above his knees. They swim for about ten minutes, and BB hops out, needing again to be dried.

He runs inside, grabs a bag of Doritos and says it’s time to get dressed and play more with his dog. Hey, this no laptop/DSi stuff is keeping him outside more, getting more activity, not such a bad thing! Sneaky parents, aren’t we? We just got lucky, that’s all. Dinner time comes around, and he’s mad because he’s not allowed to drive the truck that the teens use to drive around the farm. Uhm, Honey, you’re nine. Nine year olds don’t drive. But Daddy can take you for a ride on the quad. NO! Alrighty then, be angry. He refuses his cheeseless burger and Dh makes him chicken wings. Nice giving in there, Daddio, he’s supposed to expand his diet…but I only think this, I don’t say it. It’s been a day of battles and this one’s not worth fighting. If he eats a good amount, he eats, the “what” doesn’t always matter.

As dinner was late, he took his meds and declared it bedtime. Cool. Shower, jammies, cuddle, and he tries to fall asleep to some inane but clean TV show. (Not always easy to find.) He insists I stay in there with him, so I lay down with the Yorkie and ‘sleep.’ Not really, but he doesn’t know that. Soon enough, he’s out enough to shut his eyes, tells me I can change the channel on my TV (gee, thanks) and goes to sleep. I debate whether or not to be social and go hang out with everyone in the family room, or get some sleep. Sleep wins, though I do hear laughter. I brush my teeth, hope for at least six hours of real sleep, and Dh appears, everyone was going to bed. Oh good, so I only look partially anti-social. But I’m tired, so I only half-care. Dh takes his glasses off immediately, a signal he’s going straight to sleep, no TV, so I decide against turning on the light and finishing the book I’m reading, Jodi Picoult’s “House Rules.” I’m almost to page 400, and dying to know how it turns out. Thing is, if I keep being as tired (or lazy, as BB would call it), it will be a little while. I lay down, listen to BB have a nightmare, then his service dog (who lays right next to him on the floor, on a special bed) has what sounds like a bad dream, and again hope I get a decent amount of restorative sleep, a term I heard Dr. Oz, who I don’t normally watch, use on a show earlier this week. With that, I close my eyes and am out. The end.

Some days are pretty boring, and now that we’ve cut back our errands and activities, by choice, we spend a lot more time just living — we sit by the pool or the fire pit or just enjoying the sun and sound of birds. (Occasionally, we hear the sound of hunters and we all jump, but I’m told we’ll get used to that.) BB tells us some days that he loves it here, other days he says he hates it. That’s usually anger talking, and we disregard, but it sure does make for some entertaining days. Autism — never the same thing, always unique. Always an adventure.

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