Wednesday, April 29, 2009

More bus drama

So, as I had discussed a few days ago, Jaymes is a holy terror on the bus, and finally the transportation folks decided I might be right about him needed to be restrained. Took weeks to get the harness, finally they did it today.

And within five minutes of being put in it, he was out.

I'm trying to hard not to crack up, but I can't help it. I feel for the poor bus driver, and I hope he can talk the school into giving Jaymes a bus aide, because I have not been able to. Why does Jaymes need a bus aide, you may ask?

  • He changes seats every two seconds
  • He climbs on top of other kids
  • He opens his backpack and dumps stuff all over
  • He tries to exit the bus
  • He hangs out in the aisles
  • He hits and kicks other kids
  • He's Jaymes- Tiny, delicate, and easy to send catapulting through a bus windshield if there is an accident and he's not restrained in a seat
IEP meeting Friday to discuss extended school year. Will probably address the bus situation as well. Also Friday is Kindergarten Screening. Not sure what that is, but it'll be interesting. Also friday, OT and Speech have been scheduled because they were unavailable at the normal day and time.

Please stop, I'm out of towels

When the shit hits the fan, it realllllllly hits the fan. One crisis isn't enough, nor two. No we need THREE. Three long term, ongoing crises. Did I spell that right? It's unusual for even me to have to discuss a crisis and need to use the plural form. For god's sake. On top of all the other BS going on right now. Maybe I should sell my husband, he'd bring enough to buy a car, right?

Ok, maybe not. I guess I'll keep him. Meh.

Tuesday, April 28, 2009

Still alive and kicking- literally!

I swear pretty soon here I'll be more active in blogging, been a really hectic month for us! This week is especially crazy. Jaymes is still having aggression issues, he has taken to knocking Sierra down on the trampoline, then kicking her in the stomach, ghetto style- so Si-Si is with me at all times. I don't know why he does it other than that her screams amuse him, and she's not old enough to explain to her that she needs to stay away from him and try not to scream, because that behavior is reinforcing his desire to torment her.

Jaymes bus driver sounds about at the end of his rope with my little man, as well. I like the driver, he's an older gentlemen, doesn't say much, but there's a certain kindness about him if that makes sense. I like him. Back at the start of the school year, I told the school Jaymes really should be in a harness restraint on the bus, as he is not likely to behave and I am paranoid that the bus could get in a wreck and my unrestrained kiddo could be injured. They said he did not need it, so I said.. Ok. Now, a month or so from school ending, suddenly they figured out he does in fact need it. And they can't get the equipment. So every day I ask the driver what Jaymes has done this time. He switches seats, jumps on the other kids, opens his backpack, runs up the aisle to try and escape the bus... Fun fun. I warned the school he did this, and my concerns were dismissed. Now I'm enjoying an "I told ya so" moment, alternating with feelings of guilt for the driver having to deal with it. Apparently they can't put their hands on him. His bus aide back in Florida sure could, and he needed it.

Aside from the bus and the Si-Si attacking, Jaymes is doing ok. He's started spontaneously talking again, which makes his hyperactivity and erratic behavior more tolerable. He'll latch on to certain things that he HAS to make sure I'm aware of.

"Chi-ken, mommy"
"Brown block"

Random stuff like that. It's weird though, when he's gone awhile not talking much, then starts again, all his words are different. Different sounding, different inflections...etc. It's weird. Kind of like it's a whole new word to him, and he has a weird accent that changes every few months.

One of Jaymes' therapists made an interesting observation: Jaymes' behavior seems to cycle, every few months. For a few months he'll be very quiet, well behaved, sort of withdrawn. He'll sleep well, and not really have a lot of behavioral stuff happening. During this time he also seems to have more trouble learning things in therapy. Then, for the next few months he'll be super hyperactive, angry, loud. we'll get tons of good language out of him (tons for Jaymes, I should say) and great therapy sessions. He's more aggressive or self injurious, depending on his mood I guess, and he is exhausting. But he's talking. We just in the last couple weeks seem to have switched from Quiet Jaymes to Way Too Energetic Angry Jaymes. Rather than lamenting the imminent loss of my sanity, I'll just say this: Here's to some great therapy sessions in the next couple months!

Wednesday, April 22, 2009

Don't throw the hammer!

I've been really failing at blogging, so much going on. Between my horse-watching for unusual behavior, trying to get set up for school and Jaymes' issues... Life's been interesting.

I'd been set up for school, financial aid and all, and was supposed to start in the summer. However, when i get to registration, early in the morning on the FIRST day of EARLY registration, all the classes were full. What a waste of time. I ended up doing a new FAFSA for the fall term, and should actually be getting more financial aid than I would have otherwise, so I guess it works out. Assuming I can get classes then. Very frustrating.

Jaymes... He'd been doing really well. No complaints. He'd been talking more, understanding directions better, eating well, sleeping well. I was really pleased with him. The meds were settled, he was doing pretty well on them. He is on Clonidine, .25 ml 4 times a day and Risperdal, .25 ml twice a day.

A couple weeks ago, he started to antagonize Sierra a bit more than usual. Poking her, touching her to set her off. She's a whiny little drama queen lately, so the tiniest touch would set her wailing and screaming, and is amused the heck out of my little muffinhead. That was annoying, but it wasn't hurting anything, so we tried to get him to stop, and get her to suck it up and stop flipping out over every little thing.

No luck. She still shrieks in agony over everything, and he still does things to her. It's gotten worse and worse, the most notable incident involving a heavy hammer being chucked across the yard at her. Thankfully it missed both Sierra and myself, or we'd have been at the ER, and like getting another visit from our friendly family CPS worker, whose visits put me into a vomit inducing panic despite knowing we are NOT abusing or neglecting our children.

I don't know why he's doing it, I don't know how to make him stop. I feel like I'm failing completely, that I'm failing Jaymes in letting him grow up to possibly become the next Skye Walker, and Sierra to not be able to keep her safe from his attacks.

He kicks, slaps, punches, slams her into walls. He throws her off the slide, knocks her off the swing, pulls her hair. He spits on her, and pushes her into the mud. He laughs hysterically while doing these things, enjoying her screams and cries. He waits until my back is turned, or I'm in the bathroom, or across the yard. He knows what he is doing is wrong, but he lacks the empathy to understand why. He cannot make the connection that he is HURTING Sierra, both physically and emotionally, he just thinks this is a funny game that is naughty- naughty like stealing cookies from the cupboard and hiding them in a walmart bag in his room.

When I pick Sierra up to protect her, he punches me and tried to pinch and claw at her legs or whatever of her he can reach. Eventually he stops, but only until the next time she's nearby or I'm distracted. I can't keep up with him, and the only way to keep Si-Si safe is to have her with me at all times.

I've tried time out. He goes hysterical, screaming and hurting himself, then escapes the time out chair and takes off giggling. He learns nothing from it, no matter how many times I put him back. I've tried smacking his butt. He laughs. I've tried taking things like his blankie until he stops. As soon as he gets it back, he attacks again. I've tried yelling, distracting him, paying attention to just him. I'm at a loss.

He's doing it at school too, apparently. It gets worse by the day, and I'm very very scared for his future. I cannot have Jaymes beating his sister up now, or in ten years. I cannot have a 15 year old who beats the living hell out of all of us. I don't want to be another Trudy Steuernagel.

I know it's terrible to say. I know I'm not supposed to think this way, but I really can't help it. It seems everytime Jaymes improves one behavior, ten more take it's place. Very few people take things like this seriously, I suspect they look at his adorable little smile and don't believe me. His teachers seem to brush it off as not a huge deal, most of his therapists, pretty much everyone but the psych, who wants to put him on MORE meds.

I don't think the solution is to drug him up even more. I don't want a zombie for a son. But I also don't want a punching bag for a daughter, she will not grow up in fear of her brother. I'm stuck. Do I continue to medicate Jaymes to control his behavior?

And this is where I begin to rant aobut the piss poor system this country has for dealing with autistic children. Waiting years for CAP/Medwaiver is RIDICULOUS. If Jaymes could have more intense intervention NOW, he wouldn't need half as much down the road. If we could nip this in the bud NOW, we wouldn't have to fear for our future. How stupid is it to wait, let kids go without, then eventually have to institutionalize them?

It infuriates me. I wish I were rich. Jaymes would have an intensive therapy program, he would have behavioral specialists to teach us all how to manage his issues. He would have everything he needs, and we'd all feel safer. But because he is Medicaid, no one will touch him from the behavioral side of things. I met a woman from the local autistic children's school, who told me that even if we couldn't afford school (more than we make in a year), their behavioral class series (6 wks) was "only a thousand."

What a fucked up country we live in, if kids who clearly need more cannot get it. You'd have to be a moron to think an "inclusive" preK classroom, a speech therapy session, an OT session, and a PT session per week are enough. It's not enough, and it's unfair. We, our government, everyone is failing these kids.

I don't even know what to say at this point without my post degenerating into a mess of expletives, so I think I'll just stop before I drive off all my loyal readers.

Sorry for the downer post, I'm just in a fuckitall kinda mood at the moment.

On a happier note... Jaymes.. I love ya buddy, no matter what you do.

Monday, April 20, 2009

More good reading, courtesy of Liz Ditz on Twitter

Read this one. And don't put you poor, sweet children through chelation. Want to be a fruitloop, chelation mommy/daddy? Do it to yourself, not your innocent children.

Can you tell that article made me angry? Chelation as treatment for autism should be illegal.

Wednesday, April 15, 2009

To hold you over...

Here are some blog recommendations, to keep you satisfied during my time of not being able to blog a whole heck of a lot. These are awesome blogs, so go read them and become hooked like I am.

Magneto Bold Too!
- By far my very favorite blog, ever. Don't drink anything while reading, it'll end up on your computer screen.

Leelo and his Potty Mouthed Mom- Witty, informative, from the heart. Love it.

Attack of the Redneck Mommy- Really, really funny stuff. Kinda sad lately, but it will touch you right down to your soul.

Whitterer on Autism- Hilarious posts, with a little seriousness in there, and some gorgeous pottery available now on Etsy. I want one, but I'm poor at the moment, lol.

Beautiful Spectrum- Because her daughter sleeps in a dog bed too, so I am NOT the only one who allows this. Hooray!

Autism, Blessings, Challenges
: Lots of fun photos for me to look at.

My Five Men- I love her latest post with before and after pics of her son's dinner plate.

Odd Mom Out- Because this line from her latest entry about made me wet my pants giggling like a fool. "I did prep him about wheelchairs though. Not to point at them, say anything mean, or god forbid, wheel them away." Jaymes would totally wheel them away, just because.. well, they're on wheels.

Earth to Brandon- My best buddy Julie's blog about her kids. She's also preggo, due sometime this summer (I've asked a million times and still cannot remember). Hooray for babies (that are in someone ELSE'S womb)

Heather's Happy Heart- Much less cynical than my typical reading *coughKelleycough cough*, with great easter egg pics to boot!

Mum's the Word- Apparently the Nintendo Wii can function as Speech therapist. Heeheehee.

And for you horse lovers out there.... Success in the Show Pen- Awesome information brought to you by the worlds coolest midgetcamelthing.

Enjoy! Sorry if I forgot anyone, I pretty much posted people who regularly comment here, because they deserve extra love for the insight, support, and advice they offer in their comments.

Tuesday, April 14, 2009

More Autism Awareness, some screaming, a limping 5 year old, and way too many Spongebobs

What a week this has been. Between staring obsessively at my mare making sure she is ok and navigating Walmart and the stormy seas of my marriage.. Well it's been a long week.

Jason is on a Walmart kick, and hours are very short at work this week. So, I've been hauled to the big W at least 3 times a day for the last week. Literally. Three trips to Wallyworld on EASTER. I'm going to go insane, I do not understand why Walmart is this man's idea of a fun time out. It's not, it's exhausting and stressful. Day after Easter I apparently said something that ticked him off, so he walked off and left me to wander aimlessly around the store with no phone and no money, and 2 kids. One child was perfectly well behaved, the other not so much. I'll let you decide who was good and who was difficult.

Jaymes spent the entire time screaming so loudly it hurt my ears. I usually don't get that embarressed with this kind of thing, but it was just me, the store was very crowded, and he was just shrieking, and shrieking, and shrieking. Not a fun trip. When Jason got over his tantrum and found me (without the aid of a phone to call me, I'll go into that in a bit) we got what he wanted to get and went home. Seems that lately Mr. Jaymes is big into promoting autism awareness by being a little stinker in public. Let's just say EVERYONE in Walmart was VERY aware of something by the time we left. What that something is, remains to be seen. To be fair, I blame the heavy crowds and noise for Jaymes' behavior. it's very stressful for an adult at Walmart, i'm sure it's stressful for him too.

The phone was an innocent casualty in the middle of a fight. I like to think that by smashing the phone, I avoided a possible murder with bare hands. Some would admire my restraint, however AT&T... Not so much. It was suggested that I not use insurance to replace the phone, because I only have 2 claims per year and one is already used up. Instead I headed off to Walmart, and renewed my contract and got the fancier version of my phone, in red, for free! Hooray!

A couple days ago, Jaymes apparently tripped getting out of the car, when his stuffed snake, Snakie, wrapped around his leg and grabbed him. He's been on and off limping since, but sometimes he seems fine and it's really hard to tell if he is in pain, or faking it. Moving his ankle around does not seem to hurt him any, and when he wants to he can run to whatever he wants. Maybe when he first tripped he was really limping and decided he liked how to felt and is just doing it now? Or maybe his ankle only hurts occasionally? Who knows, he's a strange one. if he's still limping in a couple days he'll be seeing the doctor, but I think if I took him now, they'd just say to watch and see if it gets worse.

Spongebob has been an increasingly irritating presence in my house. Jason and Sierra both just love it. jaymes doesn't care one way or the other. Spongbob annoys the hell out of me. I much prefer Elmo, My Little Pony (Jaymes loves "Pony"), Dragon Tales, Pinky Dinky Doo...etc. Sierra is a fanatic. All day, every day we have to watch her same Spongebob DVD. Over and over. It makes her so happy. And she has 6 of these little spongebob happy meal toys that she surrounds herself with, along with her big spongebob talking toy and a little red rubber bath toy crab. She watches her DVD and makes the spongebobs dance around her, like some bizarre tribal ritual. One day I expect to find her duct taped to the ceiling fan as all the Spongebobs dance beneath her twirling body. Actually she'd probably enjoy the spinning.

In other news, had Easter dinner at my moms. Good food, had a good time. Jaymes and Sierra loved their easter baskets, and consumed their weight in junk like candy necklaces, chocolate bunnies...etc. They were vibrating with sugar by the time we got home. Most of it seems to have left their little systems by now, though Jaymes WAS unusually perky this morning when I got him up for the bus.

Anyway, my apologies for the lack of blogging. I've been very busy watching my mare and making sure she's alright. I'm very attached to her and an probably a little OCD about her care. I'll try to be better, in between my sleep deprivation and insanity.

Friday, April 10, 2009

Some reading material

Still in the midst of horse issues, so here's a link to a really good article. (Courtesy of Liz Ditz on Twitter)

Wednesday, April 8, 2009

Toe Walking for Autism Awareness

Jaymes has his own ideas on how to promote autism awareness yesterday evening. Flyers? Pins? Nah, silly stuff. He'd much prefer to toe walk all around the store making strange sounds to raise awareness.

It's weird! He hasn't toe walked in years, other than the occasional excited, being goofy type thing that lasts 2 or 3 minutes. But no, this was full on, hour long toe walking, every step punctuated by a squeak, a grunt, or a moan. Loud ones. Perhaps the time has come to stick an autism society bumper sticker on his rear end.

Jaymes has been doing pretty well, in general. Less screaming meltdowns, less self injurious behaviors. He's talking more (still not a lot, but more than in the last few weeks, which is a relief to me!) and listening, seems to understand things more too. He puts his shoes and backpack away every day (with prompting) and is willing to be outside without fussing too much.

He loves to help me with outdoor projects. I've been redoing my mare's run-in shed and paddock area out back, and he is a great helper. He helps me by whacking the hammer on the wall when I'm not using it, or by opening and shutting the gate, or handing me things. Very useful. He thinks it's really cool to help pull a board off the wall with a hammer (even if it's really mommy pulling with her hands while Jaymes applies minimal pressure with the hammer.)

The only problem behaviors I'm seeing at this moment are spitting and attacking Sierra. Unfortunately, that second one is a Big Deal.

The spitting is gross, but I can live with it for a bit. He likes to froth at the mouth like a beast with rabies, or drool onto his hand and rub it around on his lips. He also likes to lick things. And drool onto the floor. We're just trying to discourage it, and tell him to keep his hand dry.

As far as poor Sierra goes... Every time I or Jason turn out backs, he's on her. Pushing her down and laughing at her. Yanking her shoes off her feet and throwing them at her or running off with them. Hitting her, throwing things at her. He knows it's not ok, and he waits until our backs are turned to do it. Even when I'm watching, if I'm far enough away that I can't grab him before he does something, he'll do it, then run off giggling madly.

You'd think Sierra would realize that it's better to stay close to mommy, but no, she loves Jaymes and follows him like a lost puppy. Or else she's antagonizing him by stealing his blanket and running off with it.

I guess some of it is typical sibling rivalry, but Jaymes' attacks are a big deal, and we're working on getting them stopped. She should not have to live in fear of her big brother.

Tuesday, April 7, 2009

Horse issues

I know I've been slacking, got a lot of crap happening here and no time to post. Sorry, loyal readers, but stick around because by the time this unexpected crisis is over, there will be pictures and quite the interesting reading.

Friday, April 3, 2009

I failed at promoting Autism awareness, but luckily, I have a month's worth of new chances!

Seems like every time we leave the house, an opportunity to give someone a little dose of autism awareness presents itself, but I've noticed that some of those opportunities end up wasted because they make me so friggin angry. I don't know how some of you do it, calmly and succinctly explain to someone being nosy or rude about your child that he or she is autistic and is not being a spoiled brat, this is good behavior and we're proud and blah blah blah. I find myself either to shy to say a word, or too angry to open my mouth without something inappropriate popping out.

Yesterday was a good example of the latter. I had Jaymes at Walmart with me, and he was doing pretty well. No screaming, he was walking with one hand on the cart a lot of the time. Hard to push a cart and control a Jaymes, but he was making it work. First encounter with the woman in wheelchair (henceforth known as WIW) was as we were passing the easter candy aisle. I was super iimpressed, Jaymes managed to walk by all that candy without grabbing, except at the very end, at which point he grabbed some orange M&M's in a carrot shaped bag. I stopped for a minute, not being able to pull him away one handed, and took the candy from him, and we went on, but apparently not fast enough. WIW rammed my cart of of the way as I was moving it, almosy ploughing down Jaymes. Shook my head and went on. a few minutes later, found myself in need of yogurt, and when Jaymes caught sight of the Go-Gurts on display under the yogurts I wanted, he was very excited and bolted to them to fondle boxes. He wasn't doing anything bad to them, and he didn't bolt far, so I was fine with it. WIW appeared, yelling at Jaymes "you listen to your mommy, that is not acceptable."

Now, a mommy with her wits about her might have gone into a logical explanation of Jaymes behavior being just fine, that he was doing a great job keeping it together, and then perhaps explaining autism a little bit. Me? I was flustered, and taken aback at someone else ordering my child to behave when he wasn't misbehaving.

I stood there blinking at her, probably looked more like a trout out of the seafood section than like someone's mother. Finally I managed to stammer "he has autism, it's hard for him to be quiet and stay with the cart." To that she said "oh well it doesn't matter, he still knows." I couldn't speak at that point, I guess the eye twitch I had going on as a result of this reply had momentarily stunned my vocal cords. What would I have liked to say? Hmm...

Um. Who the hell are you, WIW, to tell me what my son should know? Who determines what behavior is acceptable and what is not? I have bigger battles to fight than whether Jaymes runs 5 feet to grope the yogurt. He's not opening it, he's not hurting the boxes, he's not in anyone's way. STFU and go harass someone else's child.

I wish I knew a good, logical, eloquent way to tell people that this is Jaymes at his best. This is behavior I'm ok with. I'm proud that we can come to Walmart and not have to deal with a screaming, flailing child anymore. I'm proud to have Jaymes able to walk next to the cart, I'm proud of his trying to help by putting random items in the cart. I'm proud that he'll put things back on the shelf when prompted. How do you explain to someone that behavior they would consider inappropriate (Jaymes running to the yogurts), that behavior like that is ok with us, because it's such an improvement on the old? A year ago, he'd have run up and ripped open 5 boxes of Go-Gurts before I'd stopped him. He'd have thrown little tubs of yogurt across the dairy section.

So you know, WIW (as if you'll ever read this)... Disapprove all you want, but don't lecture me or my child because I AM PROUD of him. Jaymes has come such a long way, and yes we still have battles, it's still a mess part of the time. But if you only focus on what needs fixing, on the bad behaviors, what kind of life is that for anyone?

On the plus side, we did make people aware of autism.