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."

Sunday, July 27, 2008

ch-ch-changes

Well, somehow I managed to go another 10+ days without posting. It's been on my mind, just haven't made the time to get my thoughts together. And I can't even complain about being busy right now, but the busy time of year is just about to start back up........

Anyway, the thought of "changes" has been floating around in my head. Changes of various types. Number one is that (sob, sob) summer is officially ending for my family, as of 8 am tomorrow. You guessed it, tomorrow is the return of the hated, dreaded BAND CAMP for K. I feel like each school year is a merry go round......it's always turning, even when we're not on it. We jump off each summer, do our own thing, no schedules, no plans, it's blissful. Then, reluctantly, at the first of August we synchronize our steps to the movement of the merry go round, and then step on. And we can't get off again until June. I don't want to get on, I don't want to get on, but the merry go round is the life we chose when we both became band directors. So take a deep breath, lift your foot, and here we go........

We've tried hard to enjoy our last week of summer, really we did. We went ice skating, shopping, out to eat several times, to the water park, to the beach. You name it, we did it, basically. One of our dinners out was to a local restaurant that does "kids eat free Tuesday", and it appeared that the entire population of our little town was there with the kids in tow. Inevitable that we'd know someone there, and we did. We'd hardly gotten in the door before we saw a family we know from church. Or should I say, KNEW from church. Ever since then, I can't get them out of my mind, and the whole situation is so sad.

Almost 2 years ago now, we had a very abrupt and almost violent staff transition at our church. Essentially, someone was asked to leave/fired, and for most of us it came completely out of nowhere. Questions still linger about the way it was done, did it even need to be done, etc, and I don't even know how to answer that because it was all so secretive and I never had all of the info. But the bottom line remains: it created a big split in the church, and several families that we'd known well and who were active and integral parts of the congregation decided to leave. The family we saw last week was one of those. I haven't laid eyes on them since that time. They have 3 kids, and I was floored to see them and how big they are! How dare they keep on growing, even when I no longer see them as they do it?

It was so awkward though, and I hated that. We were across the restaurant from them, and it was crowded, but we basically just waved at each other and nothing else. We could have gone over to speak to them, or they could have come over, but we all chose not to for some reason. It's like there was a wall there now, and we all felt uncomfortable going across it, so we just didn't. This family, and the others who left too, are great people and were assets to the congregation who (in my opinion) are still missed. I know I miss them. Why does stuff like this have to happen?

Oh, and then tonight we got some horrible news. A friend, a mentor, a colleague, just was diagnosed with breast cancer. I don't know any details yet, we heard this secondhand through another colleague. This wonderful lady has been my friend for 15 years, and I worked with her for 8. She's taught me so much and is a fabulous band director and fabulous lady! I don't see or talk to her as much anymore, since I work on the other side of town (literally and figuratively). But now this news comes, the night before band camp starts. I cannot imagine what is going through her head right now. I DO know that she has a tremendous faith in God, which she's shared with me many times. She helped us so much when our kids were in the hospital, and always reminded us to stay faithful and rely on God to help us all through what was a painful and scary time. Now, this is HER painful and scary time.

So if you don't mind, I think I'll end this with a prayer:

Lord, be with my friend today and in the days and weeks to come. Give her the strength, physically and mentally, to face the treatments that she will undergo. Be with the doctors and nurses; help them provide the very best in compassionate care for her. Be with her co-workers, and her band students, that they may find ways to support and encourage her as they prove the old saying "the show must go on". And lastly, please give me and all of her friends and family consolation in knowing that you are caring for her and that all of this is a part of your plan. Amen.

Thursday, July 17, 2008

a pleasantly pleasant day

.....for lack of anything better to call it. Today was just that, pleasant, and I loved every minute of it. Of course, I'm stressing big time because some long-time friends are coming to town tomorrow to visit for the weekend, and they've never seen this house before, so we're in MAJOR cleaning/sprucing up mode, but still......today just went smoothly, calmly, nicely, pleasantly.

Little E went to school today, for the first time in a while, because he missed his friends, plus today was WATER DAY, and how can any self-respecting 4 year old not enjoy water day? ;) After K dropped E at school, the rest of us went palm-tree shopping. We've wanted one for a while, but not the true palm tree with the big trunk that grows really tall.....more like one of the bushy kind that grows more outward than up. It was hilarious, like shopping for a Christmas tree: "do you like this one better, or this one? This one's bushier, but this one's taller. This one's nice, what do you think?"

But we settled on one, and brought it home. A helped us dig the hole to plant it, then helped pour Miracle Gro soil around it and water it in. It looks awesome, really makes the front of the house "pop" as they say. :)

Next, I went to my school for a decidedly pleasant and stress-relieving talk with my principal. He was so nice, thanked me for taking on these Chorus classes, and answered my many questions in a very satisfactory way, IMHO. I'm not ready to start back yet, of course, but I feel a lot better about doing so after today.

Went to the outlet mall and racked up on some great stuff at Oshkosh. 2 polos for A, and a pair of shorts, a pair of "shortalls" for E and 3 pairs of socks......total bill, $35! Never mind that they didn't have what I went there to get, LOL, I still had fun because I love "beating the system" and getting such great deals! :)

Picked up E at school, and was greeted with nothing but positives......all the teachers and kids were so glad to see him, he had a fabulous day, water day was a smash, AND get this: the teachers were giving the kids cute little star-shaped sunglasses to take home (not sure why, but I digress). E asked for a blue pair, which he got, then asked for a green one for A (A's fav color) and they gave him one. That's my sweetie, thinking of his big bro.

Home tonight was Leave it to Beaver material.........yummy semi-gourmet dinner of calzones (from scratch!) and broccoli, all cooked by K. After dinner, outside to play with the kids in the cul-de-sac, and ended up meeting/playing with some of our neighbors. 3 kids in particular, one of which we didn't already know. K and E were riding bikes with 2 "big boys" (found out they're both 11), and God bless those boys, they were SO nice to E. Didn't just tolerate his little 4-year-old obsession with the SuperFriends, they played along and pretended they were Batman and Superman to his Robin. A and I played with just-turned-8-year-old D, and she's such a breath of fresh air. Very nice, tolerant of A's peculiarities, seems to really want to play with him. They kicked the soccer ball around the cul de sac, then got out his bike and her Razor scooter.

She really wanted him to ride the bike, but then I explained he hasn't learned how yet (without training wheels)......then she was MORE excited and wanted to help him learn. He resisted every way he knew how, but finally gave in and tried it. She was a great helper, very encouraging. He still doesn't quite have it, I can't let go of the bike for more than a second, but we're trying.

Inside for pajamas and homemade milkshakes, a bit more cleaning up, and then reading books for bedtime.......me with A, K with E. Now, my ears are filled with the beautiful sounds of my sleeping boys, all 3 of them, through the baby monitor we still use. Right before getting into bed, E topped off the day by telling us "when I was at school and taking a nap, I really missed you guys!" My heart is full, and today was wonderful. I am truly very blessed!

Saturday, July 12, 2008

my snuggly boys, and other news

Wow, no blog posts from me in nearly 3 weeks! Sorry, guys. We've been out of town........taking A to church camp, doing our own overnight camping up in the mountains, visiting family for the 4th, etc. Also, the kids did 2 weeks of swimming lessons and we finally finished up Tball, so we've been busy.

Anyway, you know how sometimes you're really "in" a moment, really aware of what you're experiencing right then and how wonderful it is? I have those moments a lot, as a Mom, and often the thought that goes with it is "you'd better appreciate and remember this moment, while the kids are little", etc. Had one of those last night, and it was blissful and bittersweet at the same time.

For the summer, since we're all at home and no one has school or work to go to :) , we're not doing much about an organized bedtime for the boys. We get on pajamas, we start getting into bed (usually Mom and Dad's) and turning down lights, and when we fall asleep, that's fine. Last night, K and A were already in the bed but not asleep, just watching TV. E came to me where I was sitting at the computer, and I could see how tired he was. He said "I want to snuggle with you, Mom". How can you turn that down? :)

So, he climbed up into my lap. I had my legs stretched out straight, laying on top of a wooden stool, so he just stretched himself out to match. Head on my chest, body laying on top of my legs, etc. Within minutes, he was asleep. He's good about being able to stay asleep when you have to move him.......like if he's asleep in the car, but then you carry him inside, etc. So I knew I could take him to his room to his own bed, but I didn't want to, not yet. He's 4, but very petite, only weighs about 31 lbs and can still pretty easily wear most 3T clothes, even some 2T. So I was perfectly happy to lie there with him asleep on my lap, for a good long time, just savoring the moment. Realizing that someday soon he'll be too big for this, or won't want to do it. A is already too big, for the most part, although he and I did have a nice snuggly hug this morning, and he said in my ear "I really love you Mom". They can just be so amazingly sweet sometimes, and I know how incredibly blessed we are in that department. :)

Makes me think of a book my Mom bought for me, soon after A was born. I truly, honestly cannot read it without crying. I tried a few days ago, and failed again. The worst time ever was when A was beginning to learn how to read, so he wanted to read it aloud with me.........by the end I was bawling. But despite the tears, all moms of boys should have this book, it should be handed out at the hospital whenever a son is born.

"I'll love you forever,
I'll like you for always.
As long as I'm living,
My baby you'll be."