Friday, February 27, 2009

Today, we are normal.

When I posted earlier, Jaymes wasn't home yet, so who knew today we could pretend that there is no autism, that we're just ordinary! He has been such a happy little thing, so helpful, so bubbly and pleasant. He bounced off the bus this afternoon, walked happily home with me, holding my hand (willingly!). Came home, he asked very nicely for a snack so I gave him a Go-Gurt and a cup of pretzels. We settled on the couch, watched some Thomas the Tank (video we got from a dear internet friend), and snuggled. He took off his shoes and put them on the shelf, and hung up his backpack and coat.

Later, we went outside during a brief lull in the rain that's been sprinkling all day long. He went on the slide, antagonized Sierra a tiny bit by trying to push her on the swing (she doesn't like him to touch her, and vice versa) but that's normal sibling stuff. I pulled out our new mare, Lucy and Jaymes spent some time brushing her. He picked out the mane comb and made a really great effort at untangling her beautiful but snarled mass of mane. When he was done, he told me so. He said "I want house", so we went inside with a little tantrum from Sierra, who was clearly not ready yet to go inside.

The kids took a bath together, and Jaymes brushed his teeth and played and swam like a little fishie. He willingly got out, I dried him off and he let me do his lotion. He was so silly, giggling like I was purposefully tickling him to death and yelling "Motion! Motion!" (His L sound is like an M sound, so Lion is "Mion" and Lotion is "motion.")

He stood next to the table and ate his meal with his fork. He did not want his pineapple, but when prompted, he did willingly take a lick of it. That's enough for me, he tried it. He's entitled to having foods he simply does not like. I won't eat mushrooms because well.. They're foul. So if he feels pineapple and strawberries are foul, that's his choice. I think a lot of the time in an effort to teach our special needs kids to eat, we forget that they too are human and that they deserve to be respected and not forced to eat things they really do find objectionable. Besides, more strawberries for mommy! He did do a bunch of weird stimmming right after eating, while lying on the couch. He raises his arms and does these tai-chi type moves and just watches him hands and arms moving. It's a quiet, peaceful, relaxed stim, so I won't interfere with it.

I put him in his net swing before bed, with blankie and snakie on top of him, and Sierra plopped over all that. Who needs an expensive weighted blanket when you have a swing, a giant toy snake, and a baby? Jaymes relaxes so much with the combination of the motion of the swing, the pressure being hung in a net swing gives him, plus Sierra's weight on his legs. Sierra has a ball, because she's included and she laughs and giggles and talks to me. After about 15 minutes of swinging, Jaymes was a limp little spaghetti noodle, and jason carted him away to bed. He curled up under his covers and went to sleep peacefully.

No tantrums. No hitting. No screaming. no head banging. He ate. He bathed. He put his stuff away.

I am so proud of Jaymes. This has been our week. What a sweet, happy, calm little boy he has been. I don't know why, must be the change from the Clonidine pill to the patch. He can be calm and under control on a consistant basis- he feels ok in his own skin finally. It is so much nicer, for all of us.

He's not perfect, not by a longshot. None of us are. We still have upset moments and tantrums, and that's fine. That's life with a 2 year old and a 5 year old. I don't expect perfection from Jaymes or Sierra. I don't get mad at Jaymes, who cannot come within a mile of a cup of juice without spilling it, or Sierra who tosses her used diapers in the toilet for me to discover later on, swollen to the size of a small manatee.

We're all a little nutty, that's part of our charm. Or so I've been told. I guess my point is, we got to be a typical family today, and this week. No earthshattering tantrums, no self injurious behavior, no blowups in public.

I love my children, and I love that Jaymes is doing so incredibly well in everything right now. I'm so proud of my little man, and so grateful to the doctors and the therapists, and our wonderful case worker. We have an incredible group of people working for Jaymes, and it really shows. He's come such a long way.

I'm tired. And muse-less. Where did my muse go?

Normally I have like 50 different topics I wan to make posts about. Lots of thoughts in my head, so much I want to get out there. Not so much lately. I'm tired. Not "worked hard all day long" tired. Nor "New mommy, baby kept me up all night" tired. Just tired. I got home from Jaymes therapy yesterday, fell asleep a few times on the van ride home and thanked my lucky stars Jason was home because it was all I could do to hobble to the couch and fall asleep. I woke up a bit later and had dinner, but then went back to sleep around 7:30ish. Woke up on and off to eat some sherbet, then play around on the internet looking for therapy item ideas for Jaymes' caseworker, then back to sleep.

Oh sleep, how I love you. I love being warm and snuggly in my blanket, with my enormous yellow dog squished between me and the back of the couch. I love waking briefly at 2am, looking at the clock, and thinking "yay! 5 more hours to sleep!" before drifting back off. I love that dreamless sleep, because I don't dream- I have nightmares. I have them constantly, which is one reason I'm loving having the Percocet (it knocks me out too deep for dreaming). I have a few nightmares that I have regularly, and though I know at this point how they end, they still scare the heck out of me. I hate nightmares. Funny thing though, the other night I was in the midst of my Rainbow cake induced nightmare about the cat-people who wanted to rip me limb from limb, and in my dream I thought to myself "Well, this is scary as hell but I really like sleeping and it is just a dream" and oddly the dream wasn't as scary. I guess even unconscious, I still value sleeping over anything else! I don't know why I'm so tired.

And NO, I'm not pregnant. Bite your figurative tongues!

Are any of you fans of the TV show Charmed? I really wasn't, and am not too thrilled with it at this point only because it seems so friggin repetitive (demons attack, sisters slay demons, problem solved). Jason got the entire series on DVD for Xmas (I think?) and we've been watching. we have one season left to go. It's a decent show, some parts better than others. Whoever it is that plays Leo- nom nom nom. He is CUTE.

My point was this. In one of those episodes, some freakish demon is attacking all the muses of the world. My muse appears to have gone AWOL, and I'm getting pretty darn sick of it. I tell you, it better have a good excuse, like being sucked into an evil ring by a demon with the power to shoot flames from his rear end or something cool like that, because I am getting REALLY sick of not knowing what to write about.

Part of the problem is that I'm at a point of not wanting to think about the A word. Autism. Sometimes you just want to forget it exists. I don't feel like dealing with things right now, I really just want to take an advil and a nap! Jaymes will be home in about an hour, hopefully he's in a good mood.

He's so cute, bouncing off the bus like he's a big man. He loves the bus ride, he runs up there and doesn't want me to help him at all. He smiles out the windows, and when he gets home there's a big smile on his face. It's weird, I know that as a kid I hated the bus. It was my worst fear. So many kids, and no one would ever let me sit next to them. But then I guess it makes sense that a preschool bus would be less daunting, doesn't it.

Good for Jaynes: He's braver, cuter, and has more energy than his mommy. What can I say? I made a quality munchkin.

Anyone have an ideas on things you'd like to hear me babble about? Please? Anything? Put it in the comments. Please!

Thursday, February 26, 2009

We're all on drugs

But I do really, really, really like the feeling of drifting slowly into a Percocet induced delirium each night. As you know, I went and fractured my pelvis riding Batty, and really the only thing I can do comfortably is stand. Sitting hurts, and laying down kills. The first night I had not been able to fill my Percocet prescription, and spent the entire night squirming and trying unsuccessfully to find a comfortable or even tolerable position. Come morning, I hurt even more than I did when I went to bed. As a result, the plan has been Percocet around 11pm every night. I get great sleep, and I don't feel anything. The pain stays gone for about 12 hours, which is wonderful. I'm sore and grumpy in the afternoons, because I cannot take the Percocet during the day. It makes me too loopy.

Anyway, my point was that there is nothing more relaxing than plopping into bed to watch I Love Lucy on DVD and feeling that warm, comforting, dizzying fog of pain relief descend upon me. And I have all these deep thoughts while it happens. Things you ponder only in that barely conscious state of mind. I don't remember any of those ponderings, but I know that they were profound and full of wisdom.

I think.

Jaymes too is on drugs. We switched from the Clondine pill 4 times a day to the patch. It is so much simpler, so much less stressful. No forgetting to do a dose, no peaks and valleys of behavior. It's all a fairly stable, consistancy of mood. He's cranky, but not hysterically so. He's cuddly, but not comatose. It works well for me.

School hates it, I guess he's not as good there now. I hate to be cruel, but it kind of serves them right, for doubting me when I said he's a holy terror at home and an angel for them. See now, I really was not lying! I'm sure it's just a temporary thing for him, and he'll settle down at school. He has had a weird schedule, missing a lot the last couple weeks and that is most likely his trouble.

Moving on with this post, i'm just curious about something medication related. Why are so many people so rabidly against medications? And against Risperdal in particular? I remember making a very innocent comment on Squid's blog post aobut Risperdal working so well for her son, said something along the lines of "Well, Risperdal has been the miracle drug for Jaymes." and I got (supposedly, I never saw it before it was deleted) an earful about how horrible Risperdal was.

On the broader subject of medication in general, I'll say that at first I really did avoid it. I hated the thought of drugging my child, because that's what was done to me from an early age. I remember how sick and uncomfortable the meds made me feel, or the swings in mood and energy level. I remember spitting the pills to avoid how sick I knew they'd make me feel. When I got older, I felt like I was different and messed up, and thats why I was being forced to take pill after pill.

From day one, I have always known I never want my kids to feel like they are broken or messed up, or that they have to be medicated to be tolerated. I didn't want to sedate my son to make life easier for me. I didn't want to put chemicals into his body when it was all just behavioral anyway.

But I finally gave in, gave it a try, and realized that while, yes, I am medicating Jaymes and pretty much sedating him... It's helping him and us. He can't function when he is so worked up over tiny things. He doesn't like to be angry all the time. The medication helps him even out his mood so that he can learn and play and be a regular kid. Our doctors understand my dislike of sedating him, and they are very careful to use only the smallest effective dose. We don't want him comatose on the couch (as quiet and convenient as that may be), nor do we want him bouncing off the walls.

It took me a long time to figure out that no, there is not a magical pill that will make life simple and relaxing again. Nothing is going to immediately change who Jaymes is, make him more manageable, no chemical babysitters for me. I was annoyed at first in seeing no real difference, nothing I could notice really.

We changed meds a few times. Some he did ok on, some he did better on, some he didn't do well at all on. Some made him sleep, some made him angry, some made him bounce off the walls like Flubber. We learned that there is no one medication that will help everyone, and there is NO medication that will FIX the problem.

Risperdal was, for us, the miracle drug. It made Jaymes calm enough to handle in public, kept him quiet enough to play and perform basic tasks without getting upset. It saved us hours of screaming crying fits and we appreciated that. We did realize that after awhile, the Risperdal seemed to work a little less and less. We also found out, much later on, that he was being overdosed horribly on it by a doctor who hasd no clue what she was talking about, and that that might veyr well be the reason for it not working anymore.

We got him on a regular, small dose. We added the Clonidine. We tweaked dosages and pills vs patches vs liquids. Finally we found a happy medium. We'll see how long it lasts. maybe a month, maybe 5 years. You never know. I'm glad I relented and gave the meds a try, it has probably saved my sanity and kept Jaymes from some serious injuries he would have inflicted on himself.

I guess I just don't understand why some people feel the need to crucify others for using medication or for saying a particular medication worked wonders for their child. Why get angry over it? I guess I'm just a laid back type of person about things. Most things anyway.

What is so horrible about Risperdal in general? Does it have a reputation I'm not aware of? I was told that it's the most commonly used medication for young kids with autism, and it has worked better fo us than anything else has. anyone have horror stories?

I've got Prozac, Ritalin, adderal horror stories, myself.

I did not want

To tide you over...

I'll have a "real post" coming this afternoon while I wait for Jaymes at therapy. Until then, enjoy this extremely amusing video from fellow blogger Tanis, of Attack of the Redneck Mommy. It cracked me up.

That could be the Percocet talking. Hmm.

Tuesday, February 24, 2009

Sometimes you just feel the need to eat a clown

Ok, it's not crushed up clown remains baked into a cake... It's a rainbow cake! Someone posting the idea on a board I read a lot, and I decided pretty randomly to make an attempt. We did not have the gel colors recommended, I used regular food coloring. Jason was enlisted to find said coloring, and came up with only red and blue. He refused to keep looking for awhile, and so I resigned myself to having to make a patriotic red/white/blue cake instead of a super awesome rainbowy one. Then (AFTER i mixed the colors evenly, of course) Jason finds the green and yellow. Sooo. I ended up with a lot more red than any other color. Made some purple with part of the red, and then added forest green, a puke green (meant it to be lime), bright blue, orange, yellow. Turned out pretty cool, though it makes me a little ill for whatever reason. I guess it's a psychological thing, looking at the freakish colors. Tastes just fine, like any normal white cake. I used a normal white cake mix, thinking white would hold the color better than the usual yellow cake- which it did well. I did the egg white version, omitting the egg yolks because Jason is on this low fat thing (always).

Once finished, I coated it in garish sprinkles and devoured a slice.

Jaymes cannot have this. This is enough red dye to blow up half a continent. Or something.

Cake prior to baking:

Cake baked and cooling:

Cake slice, moments before I devoured it:

And the remaining cake:

Note: The angle of the pics makes the cake look TEEEEENY. It's a normal sized round cake though. No, this is not healthy. Yes, it probably will give you rainbow poo.

I think eating this cake is what caused my freakish dream last night. Scarrry nightmare. I was at the zoo and I went into this exhibit called "Sahara Desert Stallion" (stallion= male horse, big and strong and sometimes bad tempered, for you non horsey folks) and was attacked by the Sahara Desert Stallion, who was rather obese but very very fierce. Everytime I smacked his nose, he's barrel at me and try to escape through the barn door. I finally shut him back in and ran away, but suddenly everyone around me was turning into freaky animal-people. Mostly cat people. When they scratched you, you turned into them, and they were scary and bloody and violent. I decided that rather than die a painful death by running I would pretend to be one of them and we went to Chuck E Cheese and then to some jewelry store. In the end we were at a party on a balcony with lots of bright colors (food coloring seeping through my brain cells perhaps?) and strobe lights. Scary as anything dream, my description does not do it justice. No more cake before bed.

Or maybe it was the combination of cake and Percocet. HMM.

Jaymes is doing good. He seems more leveled out and consistant on the Clonidine patch (started Friday in lieu of the 4 times daily tablet). School says he's a mess, bouncing off the walls, but I don't see that. Maybe now he'll be good for me at home and bad for them at school- how ironic that would be. Hopefully he can settle down, I'm sure he needs some time to get used to things. He is on the Risperdal 3 times a day now, .25ml. Small dose, but it is only there to help the Clonidine do it's thing and it works well.

Friday, February 20, 2009

We are all flawed. Except me. Oh wait, that's not what I meant. Um.. Can you repeat the question?

Pretty much every therapy session or doctor's appointment for Jaymes has a way of pointing out my obvious parenting flaws in subtle and not so subtle ways. It tends to come by way of screaming fits when I join the therapy session, or the therapist innocently commenting that Jaymes might possibly know how to manipulate mommy.

Yeah, I get it. My very obvious parenting flaws have been written about on and on here, so we'll just avoid that for the moment. I have non-mommy related flaws that are just so much more interesting.

I am lazy. Yes. I have to force myself to clean the house, or to write out my blog posts, or work on my website. I would much rather sit on the computer typing away in my favorite horsey-chat or on one of the several forums I post on. Mopping the floor? Meh. As some blogger I like once said "mopping is hazerdous". You could fall and break a leg. Concussion! Serious stuff, there. I can't afford to break a leg until my pelvis had had time to heal.

I am impulsive. I decide I have to have something and I have a way of trying to (or succeeding!) obtain it with little thought to the consequences. When I get angry, I tend to whip out furious emails without thinking about how idiotic I will feel later on.

I am an unholy bitch when I'm angry. Yeah, can't help it. I don't get angry often, I'm generally very quiet and spend a lot of time playing doormat to those who are more confident than me. Even when I get mad, you'll never hear me yell (Ok, maybe Jason) or get nasty... You'll get a nasty, nasty email. I'm a chicken, what can I say. Face to face confrontation is something I cannot handle- so I don't.

Which brings us to my next flaw- I'm a great believer in avoidance. I tend to avoid things that make me uncomfortable in hopes that they'll just go away. They tend not to, and putting it off just makes it that much more awkward though.

And you know what sucks? I'm one of those morons who giggles when they're nervous. You know how embarrassing it is to try and keep a straight face when you're furious or panicked and all you want to do is giggle? Seriously, giggling in such situations tends not to be received well.

Good news is this: I could be SO much worse. I could be one of those people who goes into a store and abuses the staff because they don't have the teapot I wanted in metallic orange with purple panda bears on it. I could be the prick who drives up behind you on the highway and tailgates you when you're already going 10 miles OVER the speed limit. I could be the doctor who doesn't spend enough time talking to you to know what the hell you're there for, or the specialist who doesn't bother looking at your kid before telling you what's wrong. I could be that guy who went out and got drunk and ran over your mailbox. I could be the neighbor who reports you to CPS for hearing yelling at your house, or who has a bush that sticks so friggin far out into the road that it almost causes accidents on a daily basis. I could be the guy who pounds on everyone's doors when he finds horse poop anywhere within 200 miles of his house. I could be the guy at the fast food place who refuses to give you your 5 BBQ sauces even though you come EVERY week and ALWAYS get 5, and the management knows you ALWAYS get 5 no matter what.

We're all flawed, and we're all assholes in some situation. True, some of us take more abuse than others, and some of us can tolerate a lot before we do finally go into "I KEEL YOU, BASTARD" mode. Some of us are incapable of going into that mode. some of us are really so revoltingly sweet that someone could slap our baby in the head and we'd coo "That wasn't nice, Mr. Slappypants" and hand them a cookie. Humans are a truly bizarre, flawed bunch.

What are your flaws? Are you flawless? If I whack you with a salmon, will you punch me, sweetly tell me no, or give me a balloon?

Note: Can any of you tell which posts are written while I'm on my pain meds, and which are not? LOL.

Wednesday, February 18, 2009

!@#$*!$ BLANKET

The blanket. It makes me crazy. It needs to go.

It's bad enough that it's a friggin PINK blanket. Even worse that he will only play with THAT blanket, and that no amount of urine/feces/vomit/etc smell deters his intense love for the cursed thing... Bad enough that there is a frenzied screaming fit every time I take it for washing and that he never lets it go into the dryer but plucks it, still dripping, from the washer... Bad enough that he tries to toss it out of windows, over the stairs, out of the car.

We have hit the point of no return. The therapy place Jaymes goes to is on 2 levels. The parking deck and patient entrance is on the 2nd level, and there is a sort of guard rail that lets you look down into the courtyard below. Jaymes, today, saw fit to run over there and chuck his beloved blanket over the rail. No, mommy is not leaping over the rail to save it. No, mommy is not letting Jaymes leap over the rail to save it.

Chaos ensues, in the form of hysterical weeping and cries of "pinky, pinky!" After a few muttered "grown up" words, I gathered what was left of our dignity and stalked into the lobby to ask the very nice security guy if he could get it down for us. He and the janitor went out, rescued the blanket, and of course Jaymes jerked it away from them with a look that said more than words ever could.

"Thieves! Brigands! Blanketeers! Shame on you, back off my Pinky or I shall smite you!"

So much for gratitude. I thanked them profusely, and off we headed to therapy. Tonight is OT, and because I'm in too much pain to walk around with Jaymes and his therapist and sit in teeeeeny little chairs that really only hold one buttcheek, I'm plopped in a grownup sized chair, being a good lil blogger.

Tomorrow I think I'm sending Jaymes and Jason and Sierra off to therapy, while I take my placement test at Forsyth Tech. I need to take it pretty soon here or I'll miss the summer deadline and have to wait for fall.

I'm not sure what I'm thinking. I can barely walk, and I obviously am short on spare time. I just hope I don't fail miserably in my college education venture. I suppose at worst I can just call it a learning experience and say that I'm not really teacher material.

Speaking of teachers... Had that conference with the teacher, the social worker who filed the bullshit CPS report on us, and the principal today. Jaymes' caseworker came too, which was good because she has seen Jaymes self injure, and knows that it happens. The school remains skeptical, from what I saw. I guess I can't blame them, he is very different at school. It is a pleasure to watch him play and interact with teachers and classmates... he is so calm, so peaceful, so normal.

Not so much at home.

Yeah I know, I'm a failure as a mommy. I've tried being nice. I've tried being a hardass. I've tried routines. I've tried food rewards. Toy rewards. He doesn't care. He hates being at home, it seems to make him angry. He wants to tear up the carpet in his room, he wants to climb the counters and dig through the cabinets. stuff his face with candy.

Forgive me, but I'm tired. And my pelvis hurts. Ok, actually only my left leg hurts but that is beside the point. Also beside the point is the fact that my rear end and stomach are varying shades of sunset colors or black and blues. Very festive, but I'll spare you pics of this blogger's nether regions.

Tuesday, February 17, 2009

Sometimes you have to laugh when you'd like to scream

Jaymes is driving me insane, and yet all I can really do is laugh and snuggle him even though the urge to duct tape him to the ceiling fan and watch him slowly spin in circles is there. Maybe I'm going insane? Meh, can't go where you already are I guess.

I mentioned Jaymes' blanket tossing thing... It's making me crazy. He plays on the trampoline and throws it off... Then sits there and SCREAMS bloody murder for it. Ok, I get the blanket. He does it again. And again. Then we go inside and he tosses it and his toy snake off the deck and bellows until I get it.

I get it, boy, this is a game of fetch. I'm nothing but a glorified hound for your amusement. Woof.

He tried something new today, too. I was checking my email, hear crying and look up to see that poor little Jaymes has somehow gotten his finger trapped in the dog crate. looks painful. I run to him, extract the finger, and soothe him. Two minutes later, same thing. So I watch, sneakily, from a distance and this is what I see:

Yes, he really is carefully closing up the dog crate, sticking in his finger, and face crying hysterically! Little stinker.

Tomorrow is our conference with the school (teacher, social worker, principal) regarding their completely asinine CPS report of jaymes imaginary 2 black eyes (Yes, even the CPS worker laughed at that one because only an idiot could see 2 black eyes where there was one very old, nearly healed black eye). I'm less than excited. Think I'll take one of my Percoset beforehand to keep it interesting.

I'm still VERY sore, and the meds make me sick to my stomach, but when they're working I can walk and function with minimal pain and no need for the horrible crutches... So yay.

I don't know what the plan is for Batty yet...

Monday, February 16, 2009


I have joined the ranks of several damaged mommy bloggers! Painkillers good, otherwise.. Well it sucks. I'm hoping Jaosn will have my painkillers by noon, otherwise I'll be pretty irritable.

Was riding Batty in the pasture yesterday, nothing major, just walk and a little trot working on bending and circles and he (true to his name) went batshit crazy. Bolted off to the corner of the pasture, where I -almost- got control before he decided he was still busy freaking out and pivoted and bolted again. Saw a very thick, very low tree limb coming at my head and thankfully I had the presence of mind to bend down to avoid it. That would have been really bad. Once under the tree, the booger continued galloping, with a buck tossed in here and there, and I finally ended up doing a somersault over him, stabbed my abdomnen viciously the the saddle horn (very tender spot!) and hit the ground.

To Batty's credit, he stayed next to his unconscious human for the 15 mins it took for me to finally stand up (after I'd woken up, mind you) and let himself be caught when he could have shot out the open gate to freedom.

Oddly enough, though I was very sore, I could walk. I untacked the horse, turned him out, fed him, and then took a shower. Got out of the shower and laid down and found I couldn't get back up. Finally managed to roll off the couch onto the floor and slithered my way to the bedroom where I spent a good 15 mins trying to get dressed. When you can't bend, it's HARD to put your pants on. Shoes and socks were a no-go, so I waited till Jason got home to do that for me and then he took me in to the hospital.

Spent 7 hours there on the most wonderful pain meds ever... Had 2 Xrays (which were hard because I couldn't move to let them get the Xray thinger under me) and a CT scan with this awful dye they injected in my arm that made me feel about a million degrees hot. Got lots of good sleep, thanks to the drugs but they wouldn't let me eat or drink in case I needed surgery so by the time they let me out I was puking and dizzy from not eating anything. Jason took me home, got my crutches, but Walmart's pharmacy was closed so no meds for me yet.

Obviously there will be no riding for awhile, and I'm not sure I'll ever have the confidence to get back on Batty. I love that horse... But I think I need (for once) a sedate, trained, calm old mount to just ride around on. I don't bounce like I used to, and to be honest, though I enjoy training green horses, I'm not enjoying it anymore.

Sunday, February 15, 2009

Plastic Houses make Jaymes speak in tongues

My mother got one of those cute cottage type playhouses awhile back at a yard sale for a really great price, for the kids to play in her backyard. Interestingly, at her house Jaymes was not that impressed with it, but since she decided to get rid of the kid stuff out in her yard and give it to me, Jaymes LOVES this thing.

We've actually made the back yard a lot more fun for the kids. Now in addition to the trampoline, we have a (very basic economy type) swingset, a freestanding slide, and the little house. I'm going to get a cheap kiddie pool and fill it with sand for a sand box, and then in summer we'll get another kiddy pool for swimming in.

Jaymes spends all his time in that playhouse, or asking to go out to play in it. And what he does in it is hilarious, and pretty cool considering he barely talks anymore, even for therapists.

Yep, he speaks in tongues! Ok, not really, but how cute is that?! I love the rapid fire gibberish, peppered with real words here and there, like "Night night" "go to bed" "no" "yogurt" "mommy".

More gibberish, and by the way, Sierra WANTS BABY. She makes herself clear at the end.

Another HILARIOUS thing Jaymes has taken to doing... Whenever he sees a candle lit, he HAS to blow it out while yelling "FIRE! FIRE!". When it's blown out, he says "Bye Fire". Maybe they had fire safety at school?

Cuteness finished, we've got some new, very irritating, very dangerous habits. Jaymes (as most of you know if you've watched any of my videos or seen any photos!) that Jaymes carries around his pink blanket named Pinky (Original, eh? For once he named it himself, wasn't me!) at all times. He's taken to tossing it places, then going hysterical. At my mom's office, after his poor asthmatic mommy managed to climb a huge flight of stairs, his highness tossed the blanket over the railing at the very top. It fluttered down to the bottom, where I had to huff and puff down then up to get it. At therapy, he tries to chuck it down the stairs. He tosses it off the trampoline, then screams for it.

I could deal with all that, but it's gotten dangerous. He tries to open his window to toss it out into traffic. He tossed it at a drivethru (Arby's I believe) and I contemplated not picking it up for him, but couldn't do it to him. The other day, driving to therapy on the highway on Wed. night, Jaymes sneakily opened his window and was about to toss the blanket out behind us. He could have killed someone, caused a godawful car wreck behind us. Luckily when I saw it, I screeched so loudly at him that he yanked it back and rolled up the window. I about had a heart attack. Our car has roll up windows, so there is no locking them. I thought about asking the dealership to seal that window so it can't be opened, but then it's a hazard if he needs to be gotten out in an accident. I don't know... I've just taken to watching him very closely, and if he tries anything again the blankie will not get in the car with him anymore and we'll just endure the crying. He goes without it all day at school, he goes without it at therapy. obviously I am the only person who he has it around all the time, and I need to get back a shred of authority.

Friday, February 13, 2009

That post I've been meaning to write...

I have been a terrible, terrible blogger lately! Between Sierra's croup, Jaymes ear tube surgery, my own pneumonia and now stomach flu, the vet coming out yesterday, and Jaymes-School related issues... Well, I have not had the time or the desire to write anything. And of course the subject freaks me out... But for whatever reason I feel like it really does merit a blog post.

A friend of mine (<3 Fadey) sent me some links to articles written by a college professor with an autistic son. At first I was thinking, hmm, maybe this is a casual way of saying "You're being an idiot to use your real names online, look what happened to this person". Then I thought that it was something along the lines of "you're giving negative opinions about chelation therapy/not vaccinating and assorted quackery, look what happened to this person." Yeahhh... Not quite.

The first article she sent was this one. An article much like something I, Squid, Kelley, or any of you other autism bloggers might write. An article detailing the struggles, the things her son could or could not do, the annoying habits... An article that ends positively, with the author being able to appreciate her son's "trail of sparkles."

The second article is here. The author wishes for a conversation with her son, now 17, and wonders what it might be like. She comments that she is not sure that will ever happen, but that she'll continue to want it all the same. The articles goes on to talk about her son sky, about how all the little things that he finds joy in also give her joy. About that despite how isolating life with an autistic 17 year old is, it taught her to find her own joy- if only 17 seconds worth.

Now, at this point, I was feeling all warm and fuzzy, enjoying this look into these people's lives. Click on this one, and my heart sank. How horrible, and disturbing... Although this article gives one the impression that it could have been a home invasion, robbery, something else. Not necessarily her son.

Read on to the next article, this one. Still doesn't really accuse the son of being the assailant, though he did hurt a deputy at the scene. Now, I can't blame Sky for getting violent with the police. He was likely terrified and had no idea who they were or what was going on.

Here, the police are now charging Sky with his mother's beating. Attempted murder. Here we read that Steuernagel died of her injuries and that Sky was hauled into court in a wheelchair and a spit mask, thrashing and being generally agitated as he was held by two officers.

This is incredibly sad, in every possible way, for everyone involved. It's chilling to think that a child this woman devoted her entire life to, even as those of us with younger kids with autism now are, ended up killing her. It's heartbreaking to see the picture on Age of Autism of Sky in court. I can only imagine the terror he feels, not understanding where he is, why he's being treated this way, where his mother is, and just wanting his routine back.

I do not think Sky should be held accountable for this. I think he needs to be placed in an insitution that can offer him some quality of life, while still having the personnel and training to handle him if he gets violent. Putting an autistic person in jail is ridiculous. He doesn't understand it, and to be honest I would think it would put both him and the other inmates in a lot of danger. Sky doesn't need handcuffs and tasers and a locked cage- he needs medication, therapy, and to be somewhere where his needs acan be met properly.

One of the commenters on Age of Autism's story said "For those who say, "No treatment is necessary." I invite you to look at Sky Walker in his restraints. And his mother's gravestone."

I agree. While my opinions mostly lean toward the ND movement, I do not go so far as to believe that we should let our kids with autism do what they like, with no behavioral or therapeutic intervention. Jaymes would be a holy terror (and a serious danger when he's older) if we had not started all his therapies as soon as he was diagnosed. His meds help him function and concentrate. Risperdal and Clonidine are, for us, miracle drugs. Not to say it's gotten 100% better, but I'm good with 50% better. Leaving kids with autism to do what they like and run the family causes situations like this one. These people are rewarded with a TV show and free VERY expensive home based therapy for their daughter, while those of us who spend all our time with therapies, special diets, or whatever else just plod on through our daily lives. But that's another blog post for another time.

My point is that therapies and medications very much have their place in creating a better quality of life for people with autism. Risperdal, for Jaymes, calms him down enough to function. He's not happy when he's manic and screaming and he can't learn or play. The meds slow him down just enough that he can process things better, and enjoy life rather than being overwhelmed by it.

I was a little surprised to see a lot of finger pointing at the mother (on AOA). Comments about how she should have had him on a special diet, how one commenter is able to diagnose Sky with Lyme (not having seen him?), blaming the meds...

Not all the comments are like this though. (I don't agree with pieces of the following comments, but they are good comments all the same).

You can't have the American public (Canadian too) being told "do nothing. this is natural." all while the geneticists are working toward prenatal tests while young men like Sky Walker are going through hell. Parents will hear "autism." See Sky. And choose abortion. It's gross negligence. If a parent's goal is to manage the child until group home age, so be it. But don't tell the rest of us that's the best or the moral path. And certainly don't tell the world. The women you mention will be the driving force behind the "down syndrome cure" for autism. We at Age of Autism choose teach parents, "You CAN make your child's life better, healthier and safer."

I want young parents to hear "Autism" and think "Treatable" not "Abort." I want "Autism" to sound like "Prostate Cancer", not "Pancreatic Cancer." Both are cancers, but one implies survival and the other certain death"

"We can't possibly judge the poor mother. No way. We can try to help as many kids on the spectrum as possible though through education. Therapy, inside and out - love. And despite our best efforts, herculean efforts, that doesn't guarantee we can keep our kids safe.

It's a day to pray for Sky. Period."

"Our society has yet to realize that the more we spend on the kids when they are young and the more we spend on INCLUSION strategies and community supports the more we all win and we keep our families safe (not to mention the improvement in the lives of the people with autism). The cost savings will be in fewer incarcerationss, fewer criminal justice cases at taxpayer expense, fewer emergency room visits, fewer public welfare recipients and fewer tragic deaths. Wake up America!! The tidal wave is coming."

"Nobody knows what the future will hold for these kids. The sweet tempered, occasionally aggressive kid might decide to break off all human contact at a certain point in his existence. Nobody can really tell what that trigger might be. What particular event might throw an ASD child off the edge and cause him to murder the only person in the world who really loves him - his mom (ok, some dads too!).

Ultimately, there are limits to what parents can do, what therapies can do, and what treatment can do."

You just don't know what is going to happen. Doctors just shrug when I ask them "Will my son be normal when he's older, will he be like he is now, or somewhere in between? What can I expect?"

Nobody knows. I wish we could shift the focus from pushing awareness or advocating acceptance, or blaming vaccines and wasting time and money in vaccine court . Why not spend that effort on something that would actually help? A lot of the things we parents need for our kids just are not there.

Safety items: childproofing that goes beyond the baby aisle at Walmart. How does one childproof things for a 5 year old? A 10 year old? a 25 year old? Doctors don't know. Therapists don't know. Psych doesn't know.

Medicaid recently cut funding for necessary car safety items like the harnesses or specialized car seats and buckle covers. They'd rather pay the bills when my autistic son who will not stay in his car seat gets thrown through the windshielf, than spent a few hundred to keep him safe. It's nt entirely their fault, either. Look at these companies. Jaymes car harness was $400, plus another $200 for the strap that hooked to the car. The bolt that screwed into the car was $80-ish. We're talking some metal, and some nylon straps. It did not cost these companies $680 to make one harness, it probably cost them about $50 at most. As soon as you tack on the words "medical supply" to anything, it jumps in price. We need affordable and appropriate safety items available to us. What do i tell the cop who stops me and writes me a ticket for having an unrestrained child in the car? "Well officer, he started out buckled in, but he has autism and unbuckles. I can't control what he does in the back seat while I'm driving. Should I duct tape his hands?" It's unfair to punish people living with autism (be they parents or individuals with autism themselves) for things that we cannot control. Make the services and equipment available!

We need behavioral specialists. Not the ones who charge $200 an hour and don't take insurances. Not the ones we have to drive 4 hours to. We need them locally, we need more of them. We need them to take our insurances, and to have reasonable fees if they will not.

We need better trained teachers. We need to know that our kids teachers understand autism and pay enough attention to what parents tell them. We need to know we will not be reported for child abuse if our head banging child gets a bruise, or at the very least that the teacher will recall all the times self injurious behavior has been mentioned and contact the parent before the authorities. We need to know our autistic kid won't be voted out of class for being different, that we don't have to fear our kids being abused or (god forbid) killed at school because a teacher can't handle them or doesn't understand them.

We need more services. We need to not have 9 month waits for respite. We need to know that society cares about our kids, and we need help. If we can't get some of the things we so desperately need, there will be a lot more stories like Sky's.

Go hug your kids, forget this horrible story for awhile, and reflect on what makes it worth the struggle for you. If you blog, write a post about the good things, the little things that keep you sane and happy. Link to it here in the comments.

Tuesday, February 10, 2009

Ear tubes ahoy!

Jaymes is off in an hour or so to get his 5th set of ear tubes... Wish him luck and not too much discomfort!

I am working on a post that you'll probably find interesting, but disturbing as anything. It freaks me out to think about, but it's something that we as parents of autistic kids should have in the back of ours minds though I wish it wasn't in the back of mine (thanks, Fadey! --glare--). No, but seriously, a friend brought this one to my attention and as much as it bothers me to write the post, I'm doing it. In my not very spare time, LOL.

Sunday, February 8, 2009

Sick baby...

Details on poor Sierra's misery are on her blog here. Today she will be seeing the doctor (yes, on a sunday) and then I'm taking Jaymes to the childrens museum where one of my mothers students (rec therapy students) is going to do something (not sure what yet?) with him. It will be very good for him, and I think he'll enjoy it. And who better for a student to practice on than a child who won't hold back if he gets mad? Better than trying to practice on "normal" kids, if you cna work with Jaymes, you can work with just about anyone his age.

Anyway, send healing thoughts for Si-Si, she's feeling like she did a few months ago when she was hospitalized with what I -thought- was a MMR reaction but maybe not...

Poor thing.

Oh and this morning when Jaymes came out of his room, we got to see the stunning work of art he had toiled over all night: a full scale mural of poop, in varying shades of brown. Lovely.

Thursday, February 5, 2009

Some soul searching

Sometimes little comments people make really get me thinking. Yesterday one of Jaymes' therapists and I were talking about him, and she asked if I thought Jaymes was manipulating us at home. Well of course he is. It's funny, online I make it sound like I'm so together, like I know exactly what I am doing all the time when in reality, I'm winging it most of the time.

The more I think about it, the more I find a sense of discomfort in that. By making it out to be all good and all ok, by offering tips on my website to other parents, am I being entirely phony? I didn't think so. The thing with us is this: I can understand and learn techniques for dealing with Jaymes. I can explain how to do it, and I can show people. But I cannot seem to apply those techniques to my own child. How pitiful is that?

On the other hand, is it being phony to share tips and ideas? So it's not working well for Jaymes... Does that mean it won't work for someone else? Does the fact that I cannot apply a technique mean that someone else with more talent cannot get something out of what I write?

I don't know. Online, when I'm talking about Jaymes related things, it seems to much more logical, organized, absolute. Not like real life, which is chaotic and crazy. I can sit quietly and type out a post on how to get your child to eat (which will be coming eventually, BTW) but then I sit down with Jaymes to try out what I have learned and he screams, jumps out of the chair, chews the food and spits it at me, and I totally lose track of what I was doing and cannot make it stick like Jaymes therapists can.

I guess that is what separates the mommies from the therapists. Or maybe I'm just inept. I'm really tired and overwhelmed most of the time. There are so many things I want to do and need to do and yet I have to keep the house perfect and I can't get anything at all done. How can I sit down with each kid individually to read stories or work on therapy type stuff, when the other kid will be making a mess or climbing the walls to get to the candy that is locked up in the cupboard.

Jaymes' newest obsession is taking stuff out of the cupboards. Until last week, the cabinets had eye and hook locks with the little spring snap that Jaymes could NOT undo. I say until last week because well, the locks are still there... But Jaymes pops them open with no effort. Tried spraying them with Pam to make it slippery and harder to grip, but all that did was make it hard for ME to grip them.

And so he pops the locks and digs out things. Weird things. You'll get the typical stuff, like chips and candy... Then he'll bounce on by carrying a huge bag full of ketchup packets and assorted other condiments. Or a bag of ice cream, cleverly wrapped in many many Walmart bags so as to appear to be just a bag of bags.

It makes me crazy. I spend SO much time trying to keep things clean and perfect because otherwise Jason gets home and has a fit at me, and it is SO frustrating to have Jaymes trying to trash everything. Then, while I'm cleaning up Jaymes' messes, Sierra will sneak into the bedroom and knock over Jasons giant pile of DVDs. No matter how carefully I put them back, Jason always knows and I get in trouble. I can't win!

I hate cleaning. I'd just as soon have clutter, as long as it was clean clutter. I dunno, toys on the floor doesn't really bother me. Jason doesn't think they should ever be a thing out of place, and that is just not a realistic expectation in a house with two children under age 5.

I'm not sure who will win, but there does seem to be a contest to see who can kill mommy first.

Tuesday, February 3, 2009

Funniest post ever

Read this. I laughed like an insane person for about 20 minutes following my daily check of Kelley's blog.

Monday, February 2, 2009

The great debate comes to us

I know that I have spoken out a good deal regarding my opinion about vaccination and the need for it. I have tried to make it clear that while I do NOT believe vaccines cause Autism, I do believe that people can and do have reactions to their vaccines. I believed that more than every after Sierra's mysterious illness that landed her in the hospital for 4 days with a high fever and rash, despite the doctors refusing to say that it might have been a vaccine reaction. The docs never did find out what was wrong with her though, and it just seems suspicious to me that a couple days after her MMR and flu vaccines, she got so sick. No one else in the household was sick, she does not go to school or daycare and had not been exposed to illness outside of whatever illness was at the pediatrician's office at the time of her well visit.

Yes, well visit! She was well when she went in for those shots. The doctor took a long time to look over every inch of her, and said she looked great. I trust this doctor completely, and we did discuss (prior to the shots) staggering her vaccines out a little more. She was supposed to have gotten something else (hep A maybe?)at that appointment, and I'm glad I said not yet to it, who knows how much sicker she might have become just having that extra little bit of strain to her system.

Anyway, all this came to mind after reading this article over on Age of Autism. I will admit a lot of their stuff makes me get the eye twitches similar to the things on PeTA's forum, however there is also a decent amount of good stuff there. The article is written by the mother of a baby who died as a result of a vaccine reaction. A horrible, painful reaction, the pictures are really shocking. The story brought tears to my eyes, and I don't cry easily. I do think that we as parents need to be aware that reactions can happen. Rarely, but they can. It really hit home for me when Sierra was so sick and this article made me realize how lucky we were.

Now, that said, Sierra WILL be vaccinated in the future... But slowly. She still has not had that missing Hep A shot, and I'm nervous as hell about it, but it needs to be done. I'm going to wait awhile, as she has a sniffly nose right now and I want her to be as healthy as possible so her system can do what it needs to do. It's one of those things I keep putting off and putting off, but I know I have to deal with it sooner or later. Sierra's doctor knows that I'm pretty levelheaded about the vaccine thing, and is very willing to work out a personalized vacc schedule with us which is great. I'm lucky to have a doctor who is respectful to the views of parents, and did not immediately dismiss me as an "anti-vaccine whacko" as a lot of pediatricians might have done.

Oh, I forgot to mention that as of yet, Sierra has not magically become Autistic following her vaccines. She, in fact, is stringing 4-5 word sentences, asking questions, using my/your/mine properly... She is so far beyond Jaymes in the speech dept and it's incredible to watch. It's like being a new mom all over again.