Wednesday, August 20, 2008

Bat-asses

Yeah, that's what I said, wanna make somethin' of it?

Ok, actually, it was little E who said this tonight, right before bedtime. He's currently Batman/Superfriends crazy, asking to watch them every single day after school. The old Justice League cartoon, even the old old old 60s TV show with Adam West, etc. Cracks me up to see him getting so into this!

Anyway, now he's calling everything a Bat-something.....in the same vein as Batmobile, Batcopter, etc. One episode we saw recently had a Bat-arang (yep, a boomerang in the shape of that Batman symbol). So, tonight he's playing with this weird contraption that looks a little like glasses. He puts them over his eyes like glasses, then says "Mom, these are my Bat-asses".

trying not to laugh, trying not to laugh, trying not to laugh..........

"What, honey? Did you say glasses?" "No, I said Bat-asses. Asses are the same thing as glasses". "Um, no honey, I don't think they are". "Uh huh, Mom, these are my Bat-asses, they help me see better!"

Then he runs away toward A's room, shouting to tell him: "Hey, come look at my Bat-asses!" So, what happens when he says this at school tomorrow? I figured if I enlightened him about how this actually wasn't a very nice word, don't say it, etc, it would just make him want to say it that much more. Hope I was right! Raising a bright little 4 year old boy sure is fun............LOL!

Saturday, August 16, 2008

I need more arms, and more hours

Big A has really been enjoying that lovely summer TV staple, "American Gladiators". It's become an obsession of his, truth be told, although I really can't stand the damn thing. :( Anyway, there's an event on the show called Snapback. The contestant has a stretchy cord attached to a big harness around her waist. She tries to pull herself forward on all fours, almost like crawling, and the stretchy cord is held by the gladiator (who's obviously trying to keep her from getting anywhere).

The contestant pulls, strains, grasping for every centimeter she can move forward. As she gets ahead a bit, the name of the game comes into play, and she might Snapback if she loses tension on that stretchy cord. Often, you see a deadlock where the contestant just keeps on pulling, and so does the gladiator, and consequently neither one moves anywhere!

Bottom line, I need more arms. Oh, and a few more hours in the day would be nice too. School officially started for me last Wednesday, and DH and A start Monday (so E will too, going back to preschool). We've got a full life, and are so very blessed in so many ways, I realize this. But it's that freakin' Type A personality in me that can't stand for things not to be "right" or things to be left undone, etc. So when you factor in a new full time job (OMG, first time in 7 years), 2 crazy-active boys at 2 different schools, DH has basically 2 full time jobs, the house, the diabetic cat, both boys in therapies, I'm on 3 volunteer boards for various groups, church choir, community chorus.......I could get so much more done with another arm or two. Or three. Ok, four, tops.

And 24 hours is just not cutting it anymore. If I could eliminate the need for sleep, I'd be in great shape! I'm a night owl anyway, love to stay up and get work done, play online, blog , watch Michael Phelps try to win yet again, fold clothes, etc. But when the morning comes, GRRRRRRRR I hate to get up and I feel like crap. And then I say "I have GOT to stop staying up that late" but I never do. :( Everywhere I look in this house are things I need to do something with......file, clean, put away, fold, throw away, sort, give away, vacuum, reorganize, etc, but I never seem to be able to get to it all. And the Type A girl has a hard time seeing the value in just getting a little bit done--it's hard to say to myself "yeah, but I did get 2 pairs of pants hung into the closet, that's something......" Can I just burn the place down and start over?

So, anyone that knows how to distort time or make clocks stop, let me know, ok? Even like in the old Bewitched TV show, how she could just freeze a scene while she performed some magic or did something she didn't want anyone else to see.....that I could handle. Then, maybe I wouldn't feel so swamped, tired and depressed about all that I'm not getting done these days.

Tuesday, August 5, 2008

I'm so tired

It's little E this time, not A. And I just feel so beaten down where he's concerned, behaviorally speaking.

Since K and I are teachers, obviously one of the few perks of that job is having the summer off. We're on the same schedule as the kids, and can be home with them for great family time for all of June and most of July (before the dreaded band camp).

E's preschool, however, has a policy that you've got to continue paying your tuition during the summer, whether your child attends school or not. It's to hold your spot in the program, since there's a long waiting list of people who would take it if you no longer wanted it. Sucks to pay $$$$ all summer when we're at home, but thank goodness this is the last summer we've got to do that.

Anyway, I know that E would not benefit from going for 6, 7 or 8 weeks straight without coming to school---he needs to keep up with his routine and the rituals and expectations of school, at least a little bit. But this summer has worked out in such a way that he's really come to school very very rarely. A few field trip days, a couple of "water play days", and that's about it.

Anyway, he went 2 days last week (1 full, 1 half), and then I'd intended to start this week in sending him all 5 days so that we'd get back into that routine before I start school next week (sob, sob). But yesterday morning, I just plain didn't feel like sending him. No offense to the school at all, you understand. I just thought of it being maybe the last real day of summer for us to stay home together, veg out in our pjs and watch videos, play board games, etc. So I asked him which he'd rather do, and of course he wanted to stay home. He's a "homebody", strange as that sounds.

So I let him stay home. Shoot me, but I wanted to stay home with my children while I can. I wanted one more day of no schedule, no rushing about, etc. Today, however, it bit me where the sun don't shine...........

I took him for the full day today, and they had a bowling alley trip this morning. We'd witnessed last week that if a child badly misbehaves on a trip, then they aren't allowed to go on the next one. I reminded him of this, told him to try really hard to be good and listen on this trip because he wouldn't want to miss a future trip like those other boys did. Got there at 3:30 to pick him up, greeted by the afternoon aide telling me that the morning teacher had left us a note. That's never good.

The note was on red paper. Again, not good. A sad face :( on one side, and the bad news on the other: he'd not been listening on the trip, didn't follow "any of the rules". Therefore, next week he will not be allowed to attend the weekly bowling trip. I read the note, then the afternoon aide says something like, "he really had a rough time today, I think it must be because he's not here all the time, not used to it" or something along those lines.

I'm not really faulting the teachers for their decision, and I'm going to support it (not argue, complain, etc). I'm just mad at myself, I guess, for the fact that doing what I wanted to with them this summer seems to NOT be ok in some cosmic way that I don't understand and don't like. I stayed home during the summers as a child, so did my sister. So did K and his 2 brothers, and just about everyone I know. But my child? Apparently not. And this may seem like just a little thing to whine about in the scheme of things, but I just do not think I can take another afternoon of arriving at the school to see that look on the teachers' faces, knowing I'm about to be hit with yet another bad report. Why does it have to be my child that has to stay in a constant routine of school to be successful? Why is this so freakin complicated?

Sunday, August 3, 2008

Gymnastics

A great friend of mine (who I met first in cyberspace, then in person) gave me some wonderful food for thought this week. She also has a son on the autism spectrum, and always seems to have such wonderful and "deep" insights into the ASD world and our place in it.

I was whining on our ASD forum (what else is new, right?) about the strange place I find myself in as a parent of an ASD child who would be described in the lingo as "high functioning". And in her wonderful way, my friend looked at my situation and put it into perspective, in a way I'd never considered. Really, never. I live with my role as A's advocate, protector, champion, therapist and psychologist 24/7, yet until yesterday I'd never really looked at us in this way.

It's like an Olympic-caliber gymnastics competition, specifically the balance beam. My sister was big into gymnastics when we were young, and she and I have always enjoyed watching the gymnasts on TV, etc. My favorite event is uneven bars, but I digress.

So, imagine with me, if you will: A, and our family by extension, is walking on a balance beam. (did you know that it's only 4 inches wide? oops, there I go again) On the right side of the beam is the NT world, the "real" world. It's so close that we can touch it. We don't actually walk in it, but we skirt along the edge and if we lean over just enough, we can sorta kinda feel like we're in it. We can blend in, merge into the traffic of regular life and pedal like crazy to keep up.

On the left side of the beam is the ASD world. The world of ABA therapy, advocacy, RDI, 1:1, IEPs, classroom aides, special diets, and a daily life of valiant struggles and hard-won progress. We don't really walk in this world either, truth be told. A's in a regular classroom, no aides. We don't do ABA, or RDI, or floortime or VB or anything like that. No special diets, no medications, no delayed vaccine schedule, nothing. He gets speech at school, and we do a social skills group once a week, and that's it.

So, I whine. I whine because I feel like we're walking on this tiny, narrow beam and we don't belong to either of the worlds that surround us. And that means I don't belong either. Not to the oh-so-cool Moms that I see at the park, the soccer games, and church.....my life's not like theirs. And not to the brave, dedicated ASD moms I meet in person and online either. It's almost unfathomable to me what these ladies do on a daily basis, and I don't know that I could be as strong as they are, or keep pressing on if my child was non verbal, or violent/self-injurious, etc.

Bless you, dear friend and fellow Obamamaniac. You know who you are. I guess it takes someone who looks at your life from the outside to truly see it sometimes, to give that rational perspective that you may lack. What was this amazing revelation that she gave me? Well, in a nutshell, it was this: She gave us credit. Credit for the tough hand we've been dealt. Anybody who has a child on the spectrum has it tough, no question there. But when I start thinking that I've got no right to complain about A's struggles, MY struggles, now I can remember her words, like this:

"A has some pretty sophisticated expectations placed on him, because he is so very high functioning. In many ways, your life, navigating him through the NT world, is probably much more stressful than mine - because my son is always so insulated and protected from NT expectations. A has so many more expectations on him than my son does, so I totally understand your frustrations about him, even though I don't have a similar child."