Autism Watch: 2007

Archive for August 2009

How do you teach your kid that yes, other kids are mean? How do you even begin to acknowledge to yourself that yes, other kids are meaner than you can imagine?

I know, in the scheme of things, focusing on this is weird. But, when it’s a daily issue in your house, a daily facet of your child’s autism, it’s got to be a focus. I can’t ignore it. I can’t teach my child how to work on social issues when the only opportunities he has are negative ones. I can’t tell him that yes, the world is basically good, just seek it out, when sometimes your own faith in people is shot.

Don’t assume this is our only problem — it’s just the one that I’m fired up about so much because lately, it’s worse than it used to be, through no fault of our own, and because it’s something that we can’t control. We can arrange BB’s schedule for optimal success, we can provide proper food for the best nutrition and chance that BB will eat it. We can work with his school to be sure his seat, his homework amount, and the environment, all work together for his own good. We can turn on our air and keep the house cool enough, cut his pancakes before putting on the syrup, and make sure his blanket is washed so it’s soft. But I can’t stop the neighbor kid from telling the only other kid in the neighborhood who Nasty Witch hasn’t gotten to, that they should hide from BB. That they should push him down and tease him. That it upsets him if they call him Stupid. I can’t stop my son from being upset when his friend pushes him down because the other kids says to, or from being hurt at bein called stupid. It’s the uncontrollable factors, the things that are caused by others peoples’ ignorance or refusal to even care, that can negate all the other good you’ve experienced. We adults can blow it off…mostly…but kids? Not so much.

So today,  BB’s friend from school a couple of years ago is over here to play with him. We invited him over and we are so glad he was available and wanted to come. I’ve mentioned him before, how cool both he and his family are. They’re outside now, on the slip and slide. Oh wait, they’ve unplugged it (and put it away? who are these kids??) and now have the backyard hose going down the slide on the playset. Can you say mess? And cost? But I won’t stop them for a million dollars. They are smiling, having a blast, and being creative. Who can fault that??

Tonight, a neighbor lady yelled at my son. Again. No, this isn’t the same lady that I had to confront a few weeks back for telling another boy not to play with my son. This lady, she has only smaller children and no autism experience, and apparently she feels that it’s okay for her to discipline my son or take issue with everything her son says mine does. It’s so frustrating, so aggravating, and so unfair.

I know, I whine a lot about things that happen, and I’ve been negative lately. Darn right. I’m just burned out on the ignorance out there. I know it’ll get better — rationally, I know good people are out there, but why aren’t some of them my neighbors instead of these people?

I’m at a loss, unsure what to do. I want this lady out of my face, but I don’t want another problematic neighbor. I want her to leave the parenting to me and stop making a big deal out of everything. Oh, yeah, and the “I’m going to tell your mom!” (while her child is over in my driveway setting off my car alarm) threats need to stop, too.

Ideas?

And thankfully, Dh comes back tomorrow. No third week out of state. Thank God.

Yesterday morning, I woke up to a broken coffeemaker. Hot coffee (if you can call it that) pouring out the spout of the dispenser onto my counter. Too weak to put in a cup, since the water wasn’t in with the grounds long enough to brew, so I had to lay it to rest out in my trashcan, hot water and all, all without any coffee. Thank God, I have a backup coffeemaker in my RV. However, it’s just a temporary machine so I still have to shop for a nice one. Anyway, my point is that yesterday started off bad and by the time I went to bed, I had quite a few more grey hairs and wrinkles than I did when I got up. The coffeemaker should have been a warning.

Last night I posted an entry about BB’s behavior. I mentioned how it was the first time he hadn’t come back to say sorry. Well, about 30 minutes later, he did. It was a lot longer than it normally takes, but he did. Then he went back to bed, minus the TV as I was keeping that remote hidden. How cute you are, phew, glad we got through that.

Ha.

This morning all was good until we got to the school parking lot and he realized he’d forgotten his “Gangsta” hat. Other than the fact I hate the word “gangsta” and I want him past this phase of finding that cool, I wasn’t going to go home and get it and bring it back. Buddy, you need to learn to remember it. Gas is now $3+ a gallon here, the lot is more mobbed than Circuit City at 4am the day after Thanksgiving when they’re advertising $299 computers, and I work. Once he realized I was serious, he was ticked. He started rolling his backpack back at me in an angry way — which of course didn’t hurt me, but it did raise eyebrows of other “what a brat!” parents. You know, those people who see a child misbehaving and automatically assume I’m not controlling him. And sometimes I can see why it looks that way, as I could have pulled him aside and given him the “You will stop NOW” speech (as the softspoken, “Honey, this isn’t how to …” speech wasn’t going to work) but then he’d have melted down more. More people would have stared, and he’d have entered his new class crying and standing out even further. Picking my battles, I abided when he said “Go away and leave me alone.” I was sad…not because it hurts my feelings so much as I hate for him to go through life this way. He’s at school 7.5 hours, and I want them to be as good as possible. He needs to learn, to make friends, and to have fun, and this mood doesn’t do that. I still left though. I walked far enough away to see his bright shirt fade in the distance. And he never once turned around.

I’m not sure how pickup will go. My 20-yod will be picking him up, I’ve gotta stay geared up for what his mood could be like tonight. Nothing’s working. He has therapy tonight, so for 2.5 hours, they can work on it, but I’ll be alone with him on the freeway after. That 15-minute drive could mean a lot of ranting from him. I have a good stereo at least.

Sometimes, BB’s moods can literally change as fast as you can flick a switch..minus the switch. Things seem good, he seems compliant, and you’re able to relax. Then WHAM, it hits. The mood shift.

Not sure what brought it on tonight. He’d been testy all afternoon, easily riled but in a way that he’d just respond like “yeah, so, whatever.” A mean kind of sarcasm, intended to show his complete and utter disrespect and disregard for anyone else. His first day of school was today, but there were no problems there. We got home, and he told me about three things that made him happy. He showed me his homework, and I left to run and get yet another batch of school supplies. (But, luckily, none for his class! Not sure if she just hasn’t sent the list home yet, or there isn’t any. Dare I hope?) I came home, he was playing with the boy around the corner. You know, Boy A from The Day from Hell a couple of weeks ago. (Boy A is the good boy in the story.) He supposedly accidentally ran into a smaller neighbor child on his bike, admitted it, and I made him go apologize. He said “sorry,” and stalked off, arms folded, head down. On one hand, it was a huge step, something he wouldn’t normally do. On the other hand, we’ve got a ways to go. He even was invited to go to the park with another neighbor girl from his class. Yay!

Fast forward until he returns inside and I have to make him eat dinner. It was a you push, I push (not literally, just figuratively) type of dinner, where he’d eat a bite, wander, I’d make him return, he’d have another bite. And it all went downhill from there. I had to make him get in the shower, help him wash, and while he was in there, took away his Nintendo DS and assortment of related gadgets, hide his TV remote, and let him know there will be no playing outside after school tomorrow. I hate taking that away, but the “Shut your BIG.FAT.MOUTH” put me over the edge. He was made to go straight to bed after teethbrushing, without a story or anything. It’s been 45 minutes, and he’s still not called me out to say sorry, which is unusual. He seems so bent on staying mad. No matter what I did, he said “Fine, whatever. Shut up.”

Dad’s still in Pennsylvania, beautiful but in the middle of nowhere. Our ability to talk for any period of time is minimized by his work schedule and three-hour time zone difference. I’m up at 5am, but he’s already been working a couple of hours by that point. We tried to talk tonight — I went on a serious rant after I heard the latest form of ‘no new taxes,’ or as I call it, California’s stealing of my money. (Don’t we normally have to apply for loans? Why can they just take an ‘interest-free loan’ out of our paychecks, on top of increased yearly taxes, higher car registration rates, and everything else costing more. How do people live?? I digress. Let’s just say it’s definitely motivated us to be sure our house is up for sale at the proper time so we can get the heck out. I can’t do it here anymore.) Dh gave me lists of lists to write down, but when BB started acting up, it all went out of my head. I might remember when I have a chance to breathe, which at this rate will probably be on Saturday.

I don’t mind being single mom. I stay up later, I have my laptop out without fear of noisy keys, I cook when we want it, and I’m capable of doing just about all I need to do. (Okay, so I had to ask dd’s bf to take out my trash cans. But, that’s not my fault our RV is in the way, right?) I miss dh, but I was a single mom of two kids when we met, and I lost my mom young.  I’ve been independent for a long time. Sadly, I really miss the reinforcement right now. I am exhausted. 5am comes early, and with school dropoff/pickup, chores, grocery shopping, Costco trips, numerous Target trips, getting crickets and goldfish for the animals, cleaning out the turtle tank, signing the bajillion school forms, and then BB…I hate to whine, but I’m tired. I took a melatonin tonight, hoping I can sleep all the way through. Of course, that depends on how well BB sleeps. One nightmare or sleepwalking event will kill it, but I can hope.

Tomorrow night we have BB’s therapy, and I am hoping to let them know the issues we’re seeing and see what help we can get. I know he doesn’t want to be a boogar, but when he seems so unfazed by his affect on others, I have to look to see what we can do to stop that. He’s such a doll, so loving and so smart, but when he’s telling you to shut your mouth, over and over, and looks at you so emotionless, it’s hard to remember the rest.

I do have respite on Wednesday night, and my friend and I are heading out to see Julie/Julia. I can’t wait! Not only does it just look cute and I love Meryl Streep, but it’s about a blogger! Who here can’t relate??

To me, it’s always such a remarkable coincidence that when my son shows up on the front yard of any of the kids in the neighborhood, they suddenly have to go inside for dinner…go clean their room…go dig up the bodies in the backyard. Okay, so that last one was an embellishment but you get my drift.

Note to parents who don’t want their little preciouses to learn compassion and how to play with someone different: come up with some new reasons. Open your child’s mind as well as your own. Bigotry comes in all shapes and sizes, and you’re perpetuating it.

Now that I’ve gotten that off my chest — within five minutes of yet another miraculous Emptying of the Neighborhood — I feel better, and I can go on with my excitement over another great day of being with BB. I worked a half-day — Fridays are frequently half-days during the summer where I work, yayyyy! – and then we hit up the local Brunswick alley, where I must have seemed like the biggest ignoramoose ever seen. How much is a game? Oh, per person? Shoes cost too? How do I reset the pins? Bumper guards, yeah, can we have them, too? Do we each throw the ball twice per turn, or do we go back and forth? Yes, I am a Bowling Virgin. But, thanks to wonderful lane-neighbors (who are nicer than some of my real neighbors, ha) we muddled through set-up and played three games. We also experienced bowling alley pizza and then finished up with a rowsing game of air hockey.

BB at the Bowling Alley

BB at the Bowling Alley

It was a blast! $27 poorer, we left to make a quick trip to Trader Joe’s (had to get some wine for our Mexican food-themed Nascar race party on Sunday) and then to the post office to mail a friend something. He did great on both errands! Well, great may be an exaggeration, but he didn’t get mad, and that works. He’d never been to the post office before, and he really doesn’t care if he never goes again. (One guy in front of us hadn’t been around for delivery and took quite a while to complain about it..over and over despite a long line of waiting people.) But, still, he did it, I got all my errands completed, and we came home where he could decompress while I caught up on stuff, checked in at work, and made crabcakes (homemade) for dinner. In another 1.5 hours, we’re off (or maybe just me — I’ve been bribed with a Roadhouse Tea) to pick up dh from the airport. He gets to help me further plan Sunday’s party, though he can’t attend. But, it was his idea, so he’s not off the hook that easy.

Enjoy your weekend, and if you’re hiding your child in your house until mine goes away, shame on you. He’s autistic, not stupid.

Well, after learning that our lovely (choke, gag) state can no longer afford to pay for social help for autistic kids, I listened to BB worry about visiting school this morning to meet his new teacher. I’ve been hesitant about starting a new year — not because of the teacher, but because of the things we can’t control, like the kids he’s going to be around. But, the teacher visit went really well, so I’m feeling as positive as I can about the whole routine…the getting up early, the rush to get out on time (which only occurs at the last minute, no matter how far ahead we plan and how many times I remind him he has two minutes till toothbrushing time), the “I don’t want to go! Can I stay home?” pleas, the tedium of making a lunch he’ll eat.

His teacher seems like an excellent fit, and I think he’ll do well. I have a good feeling. And I like to be reminded that sometimes, things really do turn out better than you think!

So it’s not cryin’ in his beer, but it was pretty sad to see nonetheless. And it was actually his dad’s coat.

As I shared earlier this week, daddy’s on a business trip out-of-state. I wasn’t sure how much BB thought about it, but last night, at bath time, he saw daddy’s Nascar jacket hanging in his closet. I thought he was kidding when he grabbed it and stuck his head inside, but within two seconds, I realized how very seriously sad he was. The sobs were soaking the jacket and I had to pull him away for a mommy cuddle, and a promise that he could email daddy when he was out of the tub. Twenty minutes later, he was writing daddy the cutest little (or not so little) email you’ve ever seen. I know it made dh’s morning to see when he woke up today, three hours ahead of us. When he called BB to talk to him this evening, BB hesitated for a sec, then when he realized it was really him, the DADDY!! was probably heard all the way in PA even without the phone. Too cute and worlds apart from where he was when daddy was traveling a couple of years ago, or even last year.

Today he had a good day. He was a bit mouthy and controlling, but that’s easy compared to some things we’ve dealt with. We made cookies, had a really good dinner of salmon and leftover knish, and then settled down to watch an episode of  The Othersiders. If you haven’t watched this show, beware — it’s a kid show, done by teens, but is pretty creepy! But, it was a good excuse to cuddle. BB made us a ‘bed’ of pillows and blankies on the couch, and he ate some chocolate while we held our breaths to see what the investigators found. (Is it bad to say I was glad when the show was over? Did I mention it was creepy?) Now we’re snuggled watching All Dogs Go To Heaven 2 on Video on Demand, a favorite benefit of our new-ish U-verse TV provider. (Dare I say we’re entirely thrilled we can finally record on any/all TVs instead of just the ‘brain’ unit downstairs?) He’s playing DS, and I’m on the laptop, so I’m not sure how much we’re watching, but we’re enjoying co-existing. He smells like vanilla sugar, courtesy of the Bath & Body Works shower gel I let him use in his epsom salts bath, and I’m thoroughly enjoying this nighttime routine.

Tomorrow morning, we meet The Teacher. I’ve heard only good things about her, so I have high hopes it will go well. I’m hoping to give her the Top 20 Things About BB list, verbally, inside the 20 minutes we have. One per minute, I guess.

Friday’s Mommy and Me day — I have half-day Fridays (but a spacebar that isn’t working completely) — so we are going bowling. First time together, first time for me in many years, and first time for him at all. It’s just him and I and our $1.29 per game coupon…and I don’t know how to score. Are bowling lanes automated yet??

Enjoy what’s left of your summer before school starts. Ours went way too quick.

These last couple of months have been a busy time. It’s summer, and whoever said ‘lazy days of summer’ didn’t have young children. There’s always something going on, even when there isn’t. We’ve had some negatives — having to increase his meds a bit instead of decreasing them, social events that don’t work out, plans that go awry — but it’s been overwhelmingly positive. See, as the parent of an autistic child, I’ve learned to appreciate things in a different light. When my oldest (now almost 21) was this age (8.5), she was diving off the diving board. I was so impressed, so proud, even if it occurred mainly at our pool at home. Look at my daughter! So exciting! She can dive!

But with a child with autism? The ‘normal’ achievements don’t necessarily occur at the normal aka socially acceptable time, and our goals are a bit different. Some moms want their children to win spelling bees. Mine would fidget and dance and tic all through a contest on stage, but he can outspell and out-vocabulary (my made-up word, deal) most kids years older than him. Thing is, he will tell the kids that and then not understand why neither they nor their parents like that, and tell me “but mom, I was just saying the truth.” Years ago, we put Barnacle Boy in swim classes, with disastrous results. Mommy and Me classes became Mommy and Daddy and Big Sister and Me, and the other moms weren’t quite sure how to react to the three-year-old, the oldest in the class, who cried every time he got wet and refused to go underwater without a huge tantrum. (And, if I were to be completely honest, neither did Mom or Dad or big sister. BB hadn’t yet been diagnosed, and we were just starting to get an inkling that things were more off than what could be attributed to him being a premie after a tenuous pregnancy.) Each summer, even after the diagnosis, we tried swim classes. Moms and Dads (and grandparents and aunts and uncle, none of which my child has ever had come to anything like that) are cheering their kids on for laying on the kickboard or jumping in the pool while staring at mine for licking everything and everyone and refusing to put his head in the water. Some days, he wouldn’t even get in the water. When he did? We cheered like he’d just won a Nascar race, with people staring like we were fools. And we could care less about their stares.

Yep, autism makes you appreciate their accomplishments so much more than other kids. And I can say that as the mom of three other children, too. I cheered them on, was proud and celebrated but this is different. When my son overcomes something that’s more than just a normal challenge, my heart almost hurts because I get so excited. It’s hard to understand or explain unless you’ve been there.

This summer was a summer of changes. First, we took a trip to South/North Carolina, then decided to buy property there. Property bought, now we’re planning a permanent move. Pretty big change, moving from SoCal to the Carolinas, but BB is so excited and wants to go now. (So do I, but that’s a whole different story.) He told me, “Mom, I want to move right away. Everyone here is mean to me, except for xxx, and I have only one friend. I am tired of it. I want a new place to start again.” Who can argue with that? True words of wisdom.

We also made the final decision to change churches. We use to love our church family, but as time went on, the feeling of “shouldn’t ‘family’ be more than this?” continued to grow. BB was never invited to any social events, at least one parent was telling others about how difficult ds is, we were left out of things because of ds, and he wasn’t getting the social interaction that was a big draw in the first place. It got to the point where BB was constantly asking us to stay home, and the one friend that did play with him invited him over less and less. (Social interaction, imo, needs to be reciprocated.) Other parents pointed at him, talked, or whispered, about him, and a few took it upon themselves to discipline him, even if we were right there in the room. Autism is vastly misunderstood, so each year, we gave a lesson during teacher training, and we made a notebook, plans which the pastor approved of. Yet some of the volunteers couldn’t tolerate him, and others disregarded what we wrote entirely. Acceptance and the love that’s supposed to be shown to fellow humans, by Christians, waned. I guess it’s okay, he’s just a kid…not.

And there were good changes, the achievements we are so happy about. One was that ds can almost swim! He can do small spurts across the pool, and last night, at a friend’s pool, I taught him how to blow air through his nose so he didn’t have to plug his nose and swim with one arm. Woohooo!!

Another huge deal was a surprise to us. A week ago yesterday, he learned to RIDE HIS BIKE…without training wheels!

Next up on the agenda? Tying shoes so the new tie vans we bought him a couple of weeks ago can officially be his new school shoes. And he can do it, I have no doubt. Never underestimate a child just because they can’t communicate like society says he should, or because he has meltdowns that make the Grand Canyon look like a a divot on a golf course.

He starts school on Monday. New teacher, new room. Same aide at least. More changes, and there’s a lot of unknowns. He worries about having friends, and so do I. He worries about people picking on him. So do I. I also worry about how long before the first time the school calls because he doesn’t feel right, or if another parent will not be able to stand him and therefore tell the teacher. But, it’s temporary. We’ll be, hopefully, moving within a few months, likely after the holidays. The loss of our best neighbors, the nastiness of another neighbor and the overcrowded, overtaxed and underbudgeted state is on our nerves. (That and the fact you can’t even merge onto the freeway from the onramp without having to shove some uncooperative person out of the way or drive on the shoulder, but I digress.) We have no church family, which isn’t a huge change as we didn’t have much support there anyway, and we aren’t jumping in to join a new church with a pending move. The move will bring BB closer to his cousins, one his same age/sex, and he’ll get to roam our five-plus acres with dogs, wildlife and trees to climb. I really think a slower pace is going to make a world of difference.

As I write, BB’s at his friend’s house. Bless his mom and dad, truly. Ds does well there, but I think a lot of it has to do with them not being stressed-out people who can’t deal with him. They don’t sweat the little things and he doesn’t feel under pressure. And their sons? Wonderful kids, not to mention adorable. They are one of the few friends we will miss. BB is spending the night!! His first overnight, and I’m probably almost as excited as he is. (And my house is actually quiet enough for me to find time to blog, something that doesn’t happen as much as I’d like it to.)

Dh is cross-country right now, working two weeks in a city so small, he’s got one restaurant within 15 miles of his hotel. To his utter delight (I don’t use that word often, but it really fits in this instance), he drove a bit further and found a Cracker Barrel, a favorite restaurant that’s not available here in CA. Not so great for someone who eats really healthily daily and just dropped 25 pounds, but he’ll at least be able to use the hotel gym and vary his choices. He misses BB so much but thanks to Bluetooth technology, my latest favoritest thing, I can take a lot of photos on my cell and bleep them to my laptop and email them to him. We also use texting way more than Dh ever thought he would. Instead of the “what in the world do people have to text about all day long?” I used to hear, now I hear little commentary all day long that cuts through the physical distance.

Think happy thoughts that BB makes it through the sleepover without any issues. He has a tendency to sleepwalk or have night terrors at times, like his brain won’t shut down entirely while he’s asleep. But, they don’t happen every single night, and he was up and around last night, so I think tonight will be fine.

I’m off to enjoy the quiet evening. I can stay up late and work on my list of “Things I’d Do When I Get Free Time” and look forward to seeing BB in the morning.


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