Friday, January 30, 2009
Now, as most of you longtime readers are aware, I am extremely opposed to non-vacc'd kids being allowed in public school. I do not feel those parents have the right to expose our kids to possible diseases. For Jaymes, if someone around him is sick, so is he and I'm not ok with the thought of an unvacc'd kid coming in and exposing him to things that he can then come home and pass on to his not yet fully vacc'd sister. I'm all for a slower vaccination rate, staggering each shot, as long as every kid gets every shot.
However, personal feelings aside, this goes way beyond the vaccination issue. This is the school hiring a lawyer to verbally and emotionally abuse these parents into submission. To question their beliefs, to question their personal spiritual thoughts and beliefs. The slimeball in this video goes so far as to try and force these parents to explain how their God speaks to them, what he says, and whether or not he told them not to vaccinate. He also repeatedly asks why, if God made man smart enough to figure out vaccination, it's so bad to use it. (I think he has a point there, but the delivery of the question was abusive and vicious.)
I understand the school system wanting to make sure these religious exemptions are truly religion based, I really do. I've had a few people (the quack chiropractor/nutritionist, a health food store employee, and a whacko fellow parent) all tell me "It doesn't matter what you believe, just tell them it's your religious belief."
That's wrong, in my opinion. Religion should not be used in such a way. It's not a convenient excuse to get away with no vaccinating. There should be a lot more to it, if it is truly sincere. If you listen to the parents on the video talk, you can tell it IS sincere. They have a true belief in god, and they are 100% sure on what they want and what they think is right. I still disagree with them and think that they need to keep their kids vacc'd or keep them at home, but I do NOT question the validity of their religious convictions.
Agree or not, no parent should ever be subjected to such insensitive, cruel, unethical treatment. No parent should have to be asked the deep, invasive questions these parents had asked of them. No parent should have to explain what goes on in a "conversation with God." Those things are private, deeply personal spirtual experiences that no one has the right to question or interrogate anyone over.
The way the parents in the video were treated turns my stomach, and that's really saying something if you know much about me. I do not believe in God, I have no religion of any kind. I think parents who don't vaccinate and expect the schools to let their kids in are being ridiculous. Those are my personal feelings on the subject. But I DO believe that everyone should be treated with respect. Just because to me, there is no God, does not mean I do not have the utmost respec for someone else's spiritual beliefs.
Shame on any person, lawyer, or school district who would treat parents in such a manner.
Tuesday, January 27, 2009
We decided on Mcdonalds, mostly because we could all eat there for under $18 and it has a huge, beautiful Playplace. Jaymes has recently overcome his terror of Playplaces and has discovered that his life was devoid of meaning until he began to fully appreciate the charms of the gigantic mass of twisty tunnels and plexiglass windows.
I have noticed that very little eating occurs at Mcdonalds, and what does seems to go on inside the playplace. I'm sure the McD's employees just looove me. Jaymes prefers to grab a handful of fries or part of a burger and disappear into the depths of the playplace, only to re-emerge when he's run out of food. I had assumed he was eating most of the food, until I was unceremoniously forced into climbing into the placeplace to rescue Sierra and found a long trail of fries and ketchup following my little man.
Yes, I did mention rescuing Sierra. While Jaymes did overcome his fear, Sierra is not at that point yet. She wants very badly to enjoy thr playplace, but it's too intimidating for her. It would have been nice if she'd have figured that out BEFORE going halfway up and realizing she was stuck (and banging desperately on the plexiglass screeching "Mommmmyyyyyyyy!!!!!" over and over), but that's not really Sierra's style. Of course there were other families there, so I had no choice but to rescue the baby.
I recall loving those stupid playplaces as a kid. I have fond memories of playing in them. What the HELL was I thinking? As you climb in, the first thing you notice is how hard the plastic tubes are, but you really don't get a chance to dwell on the pain they're going to cause your knees, because those same knees have suddently made friends with the many rock hard plastic grippers that help you climb through the tunnels. If that weren't painful enough, the grippers and tube itself are studded with little metal bolts. All over.
By the time I got halfway up, to where Sierra was now happily playing and giggling, my knees were feeling like they have been run over by a truck, then doused in battery acid.
No point going down, may as well go all the way through and go down the slide, right? Less painful perhaps? Not quite. Another uphill climb through a stabby, metal studded tunnel of agony, the knee pain disappearing every few seconds when a violent static shock jolts your entire body everytime you touch the walls of the tunnel or your own clothing. Then, a cramped trip through a series of small rooms with big windows, where all the other parents get a great visual of one's now sweaty rear end being dragged through spaces much too narrow for it. It crosses the mind that hopefully the thing is soundproof, so no one can hear the stream of cursing and exclamations of pain coming from the previously peacefully eating parent shoved into the plastic deathtrap.
At the top, Jason is waving cheerfully to us, and the other parents smile as if to say "aww, how cute"
Finally, the slide! But oh, how narrow it is. Hmm. First attempt gets me stuck sideways with Sierra kicking me in the ribs wanting to slide down. Second attempt has one leg bent back in a way that would have resulted in an ER trip had I slid down in such a position. Third attempt landed me on my back with a baby on my chest, going way too fast down a way too twisty slide. hit the end, can't get up because it's still covered. Slide on rear end slowly out, and finally manage to stand up in spite of the back/neck/knee/butt pain. Jason whispers "Your hair..."
Static and hair. ARG. Time to go!
That finished, we headed off to the museum. We always get there right at opening at 1pm, and there is always a line. The guy at the front desk knows us by now, and he has noticed how different Jaymes is. It used to be we came and left, Jaymes kicking and screaming bloody murder. now Jaymes comes in excited and leaves with only a few disgruntled moans. The museum has done great things for Jaymes. Used to be we could only play with the train tables, but he's slowly branched out to playing with other things too. The main portion of the time spent there is still trains, but I can live with that.
This time, Jaymes decided to go to the Theater section first. This is a room with a small stage, and carpeted stair type seating. There is a podium with buttons for sound effects and lighting, and costumes out behind the stage.
Jaymes has never willingly put on a costume- not ever. Halloween wouldn't be Halloween without his screams of protest as i wrestle him into whatever sute disguise I've purchased for the occasion. And yet this day, he walked onto the stage, grabbed a full body cookie monster suit, and put it on. Even the hood.
I melted with the sheer cuteness. And the cuteness didn't stop there, no it did not. He wouldn't take it off, and wandered the museum for the rest of the 3 hours wearing it. He was so sickeningly cute that everyone turned to look at the sweetness. Other kids said "Cookie Monster!!!" and got excited. Jaymes ignored them and played on the train tables. He tossed his pink blankie over his neck like a scarf, and got very angry everytime his cookie monster hood fell down.
He played blocks, he tossed balls, he blew bubbles. All in his suit, all happily and willingly and without yelling. When finally he did get too hot, he slithered out of the costume and went on with his fun.
What a cool day. I have video, but AT&T is being stupid and I can't send the videos to my email, so you'll have to wait on the visual. It's worth the wait, believe me.
Oh, and the best part: At the end of the time there, he took off his shoes and plopped down in the sandbox. Jaymes has never ever sat in sand willingly before, and here he sat with the other kids, scooping sand into a cup with a spoon. He was happy, he was serene, he was just like all the other kids. He didn't mind that he was getting sandy, nor that others were around him, he was just peaceful.
Monday, January 26, 2009
If some of you bloggers would be willing to check out the site and do sort of a mini- review on your own blogs, I would be eternally grateful. This site is my way of helping others, my way to feel like I am making some sort of positive impact in the autism community. But all my work means very little if I can't get it out to the people who could really benefit from the information and resources.
I do not make any profit on this site, believe me, it costs a good deal to keep it running... But to me it's worth it. I'll eventually have sponsors to help with the cost of keeping it up, but even then any monies leftover after paying the server fees will go right back into making the site better and better.
Those of you who do not have blogs can help out too! Post up links to the site (not the blog!) around Myspace, Facebook, or whatever sites you use. Word of mouth (keyboard?) is just as helpful as anything else.
Thank you all for your support, and I promise I'll get back to blogging about interesting things rather than website crap!
Now, off I go to clean poop off the wall in Jaymes room, remove a cookie from Sierra's diaper, and yell at the dogs.
Thursday, January 22, 2009
The site is, unlike this blog, as unbiased as possible. I will be including both pro and anti vaccination information, traditional and biomedical therapy options, all with as little bias as possible. My hope is that parents will research and come to a decision about vaccination or treatment in a fully educated way, rather than pointing people to the things I would like them to choose.
I could REALLY use some help from you readers, though. Things I need, desperately:
- Articles written by you that deal with anything autism related, therapy related, anything you think would be a good resource for parents looking for information. I can spell check/edit for you, and articles must be a decent length, though a novel is hardly required! I cannot compensate people for their work at this time, however you would be credited and your work up on the web for others to marvel over! You can email articles to Amber@dontbitethedog.net
- Resources for your state. Agencies, therapists that are especially talented with autistic children, autism friendly pediatricians, DAN! docs. Anything goes, all I ask is that the resource have a website to post up. You can email that information to the same email above, and please do check the list for your state first so you don't send links to things that are already up!
- Photos or video of YOUR autistic child. I cannot accept videos or photos without parental consent. these will be used around the site, and videos in the Video Library. Videos most in demand are stimming videos and therapy sessions on tape. Much thanks to Caandahl of Youtube, and Squid of The Adventures of Leelo and his Potty Mouthed Mom for the videos they allowed me to use!
- Suggestions for additions to the site, errors you might have noticed, or anything that you think will help me make the site a sucess.
Thank you for your support, and forgive my lack of blogging while I go crazy working on the site.
Oh, and if you guys wouldn't mind, would you access this blog through the link on the website? I'm trying to jack up my site traffic a bit, and this would help me immensely.
Tuesday, January 20, 2009
I try and choose my battles wisely. If Jaymes wants to play with the cans, it's fine by me. I don't care if he makes a mess of the room he is playing in, because I'll make him help clean it up later. I don't expect perfect obedience, nor do I expect Jaymes to be able to handle situations just because we want him to. For example, months ago, we had some extra cash and decided to go to the KFC all you can eat buffet. Jason loves KFC, and I like them ok too. Sierra is a chicken fiend. But when we got inside, the problem became pretty clear, at least to me.
There was a huge line. Strike one for Jaymes. He does not handle standing in cramped crowded lines. We're working on it, because in the real world it's just a hard reality. You have to stand in line, and doing so politely and quietly is the end goal. If it had only been the line, I'd have made him muddle through it. The restaurant was tiny, they only have like 6 tables all cramped together. About the size of my dining room/kitchen. Strike two for Jaymes. He gets uncomfortable in small, crowded areas. Add in the line, and it was a miracle Jaymes was ok. At this point, I noticed his subtle (some not so subtle as well) cues to leave. He was squirming and moaning quietly, trying to make me let go of his hand and his eyes were getting that "all hell is about to break loose if mommy doesn't help me" look. Jason was getting irritated with him, and people were turning to look at him. Strike 3 for Jaymes, by way of people making mommy very uncomfortable. He can tell when I'm getting nervous, and it sets him off big time. So I told Jason that Jaymes was not going to be able to handle himself in this situation, and honestly could not blame him. Jason was upset, and had the very valid point that we as parents should not be ruled by our offspring, should not bend to Jaymes' will all the time. In a way, I agree. But this wasn't a "I don't wanna" type situation. I made the decision to leave, not based on Jaymes behavior or demands, but because I could see how anxious and stressed out he was becoming in that 2 or 3 minutes in line.
There is a fine line between picking your battles, and letting your child run your life. On the flip side, there is an equally thin line between forcing a child with a disability to do something that he isn't able to handle and teaching him to handle something. I'm not saying let the boy do whatever he wants, if he screams his head off for candy at the supermarket, there is no pity from me.
I guess it all comes down to really knowing your child. I know Jaymes well enough, I know the signs and cues he gives when he doesn't feel "ok" with something. Jason saw the KFC incident as Jaymes being a brat and ruing his favorite meal, because I don't think he can understand that there is a difference between bratty Jaymes and genuinely uncomfortable Jaymes. He needs to understand that Jaymes doesn't do things to ruin them for Jason. That's not in Jaymes' agenda. He doesn't have that sort of thought process yet. He doesn't do anything to hurt us, or ruin things for us, or to irritate us. He'll do things that he realizes will cause an amusing reaction, like poking Sierra to giggle at her annoyed little squeals. He does it because it's a game, and it's funny to him. We stop the behavior, but I never take it to heart. he isn't doing that because he enojys Sierra's unhappiness, he just likes the angry noises she makes! The KFC situation, however, was not like that. He was genuine in his discomfort, and I take that very seriously.
It gets so exhausting trying to decide which behaviors to "fight" over and which are really harmless and can be allowed to continue. I'll continue to let Jaymes play with his cans, because while it is annoying and I have no clue what is in any of those cans anymore, it's good play. The cans are satisfyingly heavy for Jaymes, they stack nicely, and they're shiny. Jason does not want me to allow this, but hopefully in time he'll understand. Having decided that the cans were not a worthwhile battle, I added a few rules to the cans to keep our sanity and make him aware of boundaries. He can only have the cans if he asks me using either "I want cans" "want cans" or simply "cans". He can only play with the bunch without labels, if it has a label, it's off limits. If the cans cause a fight between the kids, they go away. No throwing the cans. Basic stuff like that.
His diaper hoarding behavior was one that we could not allow. Yes, it's fun for him, but diapers are expensive and we go through a lot of them. They aren't toys. I put a lock on the diaper cabinet, and we're good so long as I remember to lock it every time.
The current issue is one I haven't decided about yet. To me, it's not worth the incredible explosion that will come of denying him his fun. He's got a plastic box of Thomas the Train tracks, and he pours the whole mess out onto the couch and floor, and either snuggles with it on the couch or builds long tracks all over the house. The mess is a minor thing for me, kids play areas should be messy while play is going on, I think. It's the obsessive nature of it that I'm not sure about. I don't know that we want to encourage hours of repetitive play like this. But he is so happy, quiet, and serene while he builds his track. it's something that really soothes him.
The problem comes in with Sierra. She sees all this train, and wants to play. Jaymes uses her toys, no reason she shouldn't be able to have one piece of train to play with. He doesn't even use the trains, just builds track. But when Sierra takes a train, he chases her down if I'm not there to stop it right away. He goes hysterical, screaming, hitting, kicking and pushing Sierra. To her credit, Si-Si has some fast little legs! I have not found a way to let Sierra play without this huge fight between them. Jaymes views it as "this is MY stuff, back the hell off" and Sierra views it as "Well you're wearing MY pink blanket and stealing toys from MY room, why can't I play?"
It isn't fair to Sierra that she can't touch the trains. Jaymes makes everything his, but the trains are sacred. Tried getting Sierra her own, doesn't matter. I can see Jaymes' side of it too. In his mind those are his, and he likes them lined up just so. Her messing up his lines and patterns is extremely upsetting to Jaymes.
So the question is, do I get rid of the train? Jaymes would be devastated. Do I hide it and only let him play at certain times, like at Sierra's nap time? Do I leave it alone and continue to just try to manage the fights as they occur? Jason wants to just toss the trains, and I don't feel like that's fair. Jaymes loves those things, and so little keeps his attention the way these do.
Sometimes it's so easy. At Walmart, Jaymes can sit in the cart or stand. I would prefer he sit rather than stand, but standing is a better alternative than him shrieking and throwing himself out of said cart. Not a hard choice to make there.
Meal time is a battle worth fighting, and thanks to that mindset, Jaymes eats very well. It's still hard to get him to sit though. Rather than ruin mealtimes altogether by forcing him to sit in his chair and cause an uproar, I let him sit on the floor or on my lap, as long as he's sitting quietly and eating.
In many ways yes, we do bend our lives to suit Jaymes. I respect him and when he "tells" me that he can't handle something, or that something is THAT important to him, I listen. He deserves respect, his needs and desires and fears are serious and he should not be expected to conform perfectly to what we as parents want. After we left KFC that day, we went to CiCi's Pizza, another buffet. The place is huge, lots of space between the buffet and the tables. It's quiet, and cooler inside than KFC. It's pizza, Jaymes #1 food. The difference in that child's posture and behavior when we walked in was incredible. He was calm, not tense and nervous. He was chattering in gibberish happily, and holding my hand. Not trying to cover his ears or escape, not whimpering.
It's all about compromise, I guess. None of us should have to bend to our mother/father/child/weird cousin from Texas. Respect vs absolute obedience, I suppose. We give a little, take a little and someplace in that in-between, we all find comfort and happiness.
Monday, January 19, 2009
Anyway, click the link and check out this site. It's got a good message.
Sunday, January 18, 2009
No, not so much anymore, don't worry! In fact, I even have the next couple hours to blog, if I so desire. Jason took the kids out to do some errands (yes, he's doing errands!!!) and drop our car payment off at my mom's. I wanted to take the kids to the Children's Museum today, but I'm having trouble breathing because of my chest cold/bronchitis/pneumonia or whatever the heck it is. Usually I'm good at long as I don't do a lot of walking around or heavy movement or talk much but today I'm lightheaded and woozy just sitting around. Talking on the phone with my sister last night kind of brought it on worse I think, we were on for like 30 minutes and I was hacking up a lung by the end of it. I'm going to give it a few more days then go to a walk in clinic if it doesn't improve. Weirdly enough, I kind of have trouble discerning whether what I'm feeling is breathlessness (is that a word?) or nausea and a headache. Does that make sense? When I can't breathe well, I get nauseous so it's sometimes hard to tell which came first. I know, I'm strange.
I have this loooong To-Do list in my head, and it is making me insane. I keep the gigantic To-Do lists, and kill myself with guilt for not following through with at the very least writing the list down. Some of the To-Do list is very important, such as Jaymes' SSI review packet. some, not so much, like trying to make Don't Bite The Dog T-Shirts. Who would wear them anyway? Oh, I would! And Jaymes! And Sierra! There's another thing on the To-Do list: I need to learn how to make my site (not the blog, the website) show up higher in autism related searches on search engines. I need to do this in such as way that it doesn't cost me anything, as I pay for that site out of pocket. Ok, it's only $20 a month, but still! I get barely any traffic on that site, I think 2 this month and 8 last month... Vs the thousands on the blog! Come on guys, at least go over there and click the ads to support the site!
Also on the To-Do list is adding more video on the Autism Video Library on the site. I don't have much and it looks cluttered. I'm not sure I really like Go-Daddy's Website Tonight. It's a site builder that is idiot proof (ie Amber proof) but it lacks a lot of functions that I would like. I like to be able to drag and drop items, rather than having set areas on each page layout that can be coded in HTML. My HTML is less than impressive, so I need stoopid proof.
I'm also perpetually adding to the Autism Resources By State listing. It would be nice if people shared theirs (yes, you can do so anonymously if you wish!) so I knew I was getting the ones that people are actually using and recommending... But in the end, it'll fill out to be a nice fat pile of information! I also added a "fun on the web" section, with fun free games that Jaymes likes to play. I actually need to add one, I discovered Mouse Trial, a really useful tool for working with Jaymes. Despite having not quite professional art work (cute though!), it really is a lot like the DTT software I've seen other places. And it's free to try, and cheap to buy. I want to buy it for him at some point. The only real problem with it is, it's an Australian site, meaning Aussie accents. No offense to you Aussies, it's just that Jaymes doesn't seem to recognize the words in that accent. The program will say "click red square" and he'll be totally confused, but the minute I say "touch red square" he does it right away. I have to click for him, I have a laptop with a trackpad and he's really not at a point of being able to understand how to use it. But it's amazing, we went through a bunch of categories (foods, clothing, parts of the bathroom, animals) and 8/10 tries he got it right. He also make my new lappytop sticky with whatever yuck was on his little fingers, but that's ok.
So in between hacking up a lung, obsessing over my To-Do list, and my usual cleaning/playing with kids/going to therapy/etc I've been working very hard with Jaymes on his eating. This has been one of the main focuses in OT, and really the most important to me. It had been that Jaymes would ONKY eat chicken nuggets and fries, or mac n cheese or pizza. Now, the OT (and myself at home) have gotten him to at least try the following:
- Green beans
- Hot Dog
- Fish (this one was last night and I was thrilled!!!)
- BBQ chicken
- Baked beans
- Pumpkin pie
- Mashed potatoes
Probably more that elude me right now. Anyway, once the OT got him going, it's been incredible! Now, he only eats if i sit right there with him, and most of the time I have to feed him like a baby... But he's eating, he's cleaning his plate and trying new things. You can't beat that! He does use his fork some at home, but I cannot figure out how to set his hands up like he's supposed to hold the fork (he just grabs it like a baby grabs a crayon in it's fist) so I just focus on him trying things and eating and making it a big fun game. Unfortunately, though we've had great success, it can't really be treated like a game, and it's not really fun to Jaymes. He treats it as a serious, get down to business type thing, once he's done giggling madly and flailing around. No complaints here, for the time being. In my mind, the first step is trying things, after that he can learn to do it himself and hold the fork properly. I'm afraid to try and correct his grasp, because if I have it wrong, I'll teach it wrong, and it will have only taught him the wrong way to do something. Best leave it to the professionals, I guess.
I don't know what to think about the Clonidine. He has been a lot less angry at home, much more serene and content to watch Elmo and build his train tracks all over the house. However, his obsessive behaviors have escalated to the point that if Sierra takes on piece of track, or a train, he will chase her down and take her down to get it back. The fact that she has ONE piece out of a zillion? Doesn't matter. it's HIS piece. I've tried to make him share, but it becomes a huge blowup. I feel bad for Sierra, who only wants to play but cannot do so without being attacked. He doesn't hurt her, of course, because I'm right there to stop it but if I weren't right there...
Jason wants to take away Jaymes trains entirely. He was all "I'm throwing these away!" last night and I could have strangled him. First off, that's a good $300 worth of overpriced, brand name, Thomas the Train crap. No way in hell are you throwing that away! What a waste that would be. The other thing is that though the train stuff does cause trouble, he really loves it. He builds that track for hours, yesterday he made a giant figure 8 (almost) that went from the kitchen to the living room. He doesn't really use the trains like other kids (who build the track then push the trains along), he prefers to take one engine and roll it until the end of the track, where he adds another length of track and pushes the engine on. Kind of like how they used to build railroad in the old days, piece by piece, pulling everyone and everything along and stopping the train to lay track. The train stuff goes nowhere.
His other big obsessive thing is cans. Like from the pantry. He loves cans. He loves to stack them, to organize them into circles or snake shapes, or just to line them up or lay on top of his pile like a dragon guarding it's treasure. The can thing doesn't really bother me, although he does tend to drop them on his toes then come crying to me, then go back and do it all over again... But it drives Jason nuts and he has a fit over it everytime. It's not hurting anything, I think... But then of course, Sierra had to start ripping off labels so we have all these cans with god only knows what inside. -Warning, Amber's going off on a tangent- One day I was looking desperately for refried beans for a mexican burrito (nom nom nom), and I started shaking the unlabeled cans. First one felt like beans. And it was. Green beans. Damn. Next one was ravioli. Next another ravioli. Then a cranberry sauce. Finally, I did find the refried beans. So there are baggies of ravioli, green beans, and a cranberry sauce in the fridge. Rotten children. I can't really defend the can thing to Jason anymore, because of Sierra's unlabeling. We don't have the spare cash to waste food, and opening it before we want it seems a waste. But Jaymes' therapists say let him enjoy his cans, it's good for him. I agree. Jason says we shouldn't have to bend our lives to Jaymes will, and in a way I both agree and disagree. We do have to change big parts of our lives for Jaymes. I'm fine with this, Jason... Not so much. Maybe I do let Jaymes control us too much, I try to set boundaries and keep him out of too much trouble, but I just don't see the problem with him playing with cans. I've tried giving him blocks, he won't play with them at home. He just puts them into walmart bags and carries them around or sits on them on the couch and won't let Sierra play. At least with the cans he builds and engages in real play. Why should I have to take that away from him? The down side- people look at me like I'm insane if somehow the subject of Jaymes playing with cans comes into the conversation. What, don't everyones kids play with cans of soup and peaches and green beans and raviolis? Meh.
One obsessive/hoarding behavior I do NOT let him engage in is diaper hoarding. If he sees a pack of diapers, or the diaper cabinet is left unlatched, he will take every diaper out and make himself a nest on the couch with them. Wrinkling them and getting dog hair on them and ripping off side tabs as he goes. That's money, so it can't happen. I feel bad, but there do have to be some limits.
We had been doing really well with the no having fits at home thing, until yesterday. Don't know why, but he came home from school, got in the house, and went ballistic when I made him stop climbing the counters. He's like a monkey, up and down and all over the cupboards. I haven't installed latches on EVERY single one, that would be excessive (especially in a house we do not own yet) and he needs to learn that climbing on the counter is dangerous, and will result in immediate consequences. the consequence part is hard though. I make him sit in a chair in the middle of the room. Sometimes he laughs the whole 4 minutes, sometimes he screams and wails and bangs his head on it, sometimes he throws himself off it onto the floor head first. He gave himself some hefty bruises yesterday. I don't know how he manages it, but he seems to get a new bruise every day. Last night, at Walmart, he picked up the front foldy part of the shopping cart (the part that hinges forward so it can be attached to other carts in a long line) and was repeatedly smashing it down on his own legs. I stopped him in midswing the 3rd time, but he'd already gotten himself good.
Do they make iron suits for accident/not so accidental prone 5 year olds? Nah, he'd bruise himself inside one of those somehow. The boy is really a disaster waiting to happen. Lately, he's been so much in lala land that he can't walk right. We were walking home from the bus stop, and he just fell. No rocks, no loose shoelace, just fell over nothing and landed HARD on his forhead. Yep, he's got a bruise there too. The school must wonder about him. I sure hope they know he's a little bruise waiting to happen and that I'm not bruising him! He'll walk right into a wall, or a pole, or into a pothole if you don't steer him very carefully. It's not that he can't walk well, it's that between being totally spaced out, and having kinda bad balance to begin with, he's a ticking timebomb of falling/ramming/head whacking disaster. Poor kid.
It's cold as anything, Batty remains lame and unrideable, and the dogs have no desire to go outside in the freezing nasty winteryness that is January in NC. Me neither.
Anyway, if you read through all my rambling (did I ever get back to the point? What was the point? Hmm) cookies to you! I'm off to take a hot shower and have some peppermint green tea with honey. I leave you with these new videos of Jaymes eating.. and stimming, not eating. Or being odd. As the case may be. Take from them what you will.
Saturday, January 17, 2009
Back in the "good ole days" kids climbed trees. They played football, they rode their bikes. They didn't vegetate in front of a TV or video game, and their parents actually let them out to play in the neighborhood. I played outside during the summer from morning till night, and came in when it got dark. Sure, kids got hurt. Broken arms, scraped knees, bruises or bumps. When it happened, you went to the doctor or the ER, and they fixed the injury and that was that.
Nowadays, it seems that we as parents cannot be too careful. Long gone are the days when you could take a kid with a broken arm to the hospital and just have it fixed. Now, you'll have a social worker talk to you. She may or may not tell you that she's going to assume you did this to your child, and call CPS. We had this situation (well similar) with Sierra a few years ago. Jaymes knocked her off the couch, took her to the hospital... And we were talked to my a seemingly sweet social worker. I explained what had happened, and she said "oh ok, I can understand that. Autistic children can be unpredictable. Lesson learned, and I know you'll be more careful in the future." We were set up in a room with a few other kids with injuries for the night, assuming it was ok to now focus on our baby and her injury. At 2am, CPS agents started pulling parents one by one from their kids bedsides to interrogate them. The one I got actually had the nerve to bring my own childhood abuse into the questioning, which was both irrelevant to Sierra's injury, and incredibly offensive. Long story short, they looked at her Xrays, looked at the stellar references I'd gotten from Jaymes' doctor, therapists, etc... and apologized for wasting my time and putting us through so much stress.
We went through this horrific ordeal yet again, right before Christmas. Jaymes had, a few days prior, found a way to get up to the window latches and unlock them (I'm not sure if they were locked, the latches were very tricky) after a year of never showing any interest whatsoever in them. He did it while we slept- somehow climbed up there, opened the window, kicked out the screen... And hopped right on out. The window is a good 6-8 feet down, and goes into the pasture. He could have died in a million different ways, and yet miraculously not a scratch on him. He must have done it right before we woke up at 6 something, because when we went out to walk the dogs and he came bouncing right up to us from the side of the house.
We left immediately for Lowes, and bought pins to put in the windows. He didn't go back into the room until the window had been fixed. Now, ten years ago, it would have been no big deal. A shock for the parents, no doubt, but not a child abuse case. Accidents happen, you don't assume your child who has never shown the slightest interest in windows to just break one open and hop out.
Only a handful of people knew about this, because I kept it to us. I told 3 people who know me well, and one doctor. But on Christmas Eve, the CPS worker knocked on the door. Despite being absolutely terrified, I did very well. I answered all her questions politely, showed her around the house, and the kids were very good. Jaymes was very upset afterward, but that is to be expected unfortunately. What really bothers me is this: On the paperwork the CPS agent had to fill out, they have to check which category of abuse we're accused of. The anonymous report to CPS from whoever did it said that "She locks her kids in their rooms all day and is mentally ill". Despite the CPS agent agreeing that I was not behaving in a mentally ill manner, and that I was doing a damn good job considering all the stress in my life, she still checked that box on that abuse survey that says something like "parents action or inaction put the child's life in serious danger or caused serious bodily injury. Examples: locking child out of the house at night, burning child, killing child."
That is disgusting to me. How dare they put a freak accident in the same category as mutiliating or killing your child. You know, we should have thought about the windows. We should have, but we are not infallible. You, who have normal 5 year old children, don't have to worry about them waking up before you do and jumping out the window. You with normal children don't have to wonder what insane, dangerous thing your child will do next that will get YOU, the parent, in trouble.
The CPS agent pretty much told me that we were ngeligent because we weren't watching him when it happened. Apparently, we're not allowed to sleep. No one, NO ONE, can watch a child 24 hours a day. We all have to sleep at some point.
Our society has come to this point... This point that parents have to fear bringing their children to the doctor or hospital for injuries, to fear saying them feel overwhelmed by the gigantic task of raising a child like Jaymes, to fear asking for help. To ask for help seems to be an admission of being an unfit parent, and so we as parents sit back and suffer, wanting to ask for more help, but not being able to for fear the kids were suffer so long and so hard for will be taken from us. It's shameful. Parents are not the enemy. Yes, some parents DO abuse their kids and deserve to be arrested for it, and never see those kids again. But look at those of us raising special needs kids:
I have given up my life for the last 5 years. I have done it cheerfully, I have worked my ass off to help Jaymes. I spend hours listening to him scream his head off, I sit and hold him when he wants to beat his head against the floor or bite himself. I hold him hand crossing parking lots, even if it means being scratched bloody because he wants me off. I clean the poop off the walls, I do the daily lotion on his eczema. I take him to all these appointments, sit long hours in boring waiting rooms. I have not been to a movie in a long, long time. Maybe 3 movies in the last 5 years. I wait until he goes to sleep to eat, I spend my every waking minute caring for Jaymes. I put his blankets on just so, every night. I make sure he has his Elmo and his plastic dinosaur and the correct assortment of blankies. I make sure his blue light is on overhead, because he does not like the dark. I research for hours to find the best ways to help him, the best meds to try, the best therapies. I write out IEP goals for him, argue with the school, ALL for Jaymes. I swing him in his swing every night, to help him relax for bed. I do the sensory brushing, I do the joint compressions. I sit with him and help him eat his meals.
Why the hell would I do all this, give up my life as a person rather than a mom? Because I love him, and he is my life. I will never regret a second of any of this, because he is worth it. I will never throw this back on him when he is older, nor solicit pity from others. This is my life, and we take it one day at a time. Sometimes I'm down about it. Sometimes I'm overwhelmed. Sometimes I'm angry, even. Not at Jaymes, never at Jaymes. Just angry that god, or whoever's up there saw fit to give me such a huge task, to make me work so hard. But again, totally worth it.
But really, if I were abusing and neglecting Jaymes, locking him in his room all day and night, why the hell would I do all this? Do you know how easy it would be to pull him out of therapy, dump him with a babysitter, and have a life? If I didn't care, didn't love Jaymes, I would not put myself through this. I wouldn't spend those hours at therapy, I wouldn't pester the professionals with "how do I do this at home" type questions. I wouldn't DO any of this. I'm not perfect, I make mistakes. We all do. To some extent, with a special needs child, these things will happen. I (as a normal/neurotypical whatever) child fell off a bridge when I was 9, and split my head open. I fell and split my chin open numerous times. I got hurt all the time, and yet I didn't get taken away. But an autistic child does something totally unpredictable, WHILE WE WERE SLEEPING (he should have been too, the stinker) and I'm a negligent parent.
Whoever filed that report with CPS, I hope you rot in hell for it. We all get ours in the end, and i cannot think of a worse sin that trying to have a child who is desperately attached to his mother, taken away. Away from loving, exhausted parents who have made it their life, their heart, and their soul to care for Jaymes. It's disgusting, and shameful.
I feel for all of you with kids who don't wear bubblewrap suits, whose kids get hurt, who get interrogated and treated as I was by the system that should be here to help, and support us. We, who take on so much more than the average parent, deserve understanding and support- Not threats of taking our children away.
You know the funny thing... I have spent the last year trying to find some kind of childproofing that is intended for older kids or adults. I've asked the pediatrician, how can we lock the windows/doors/fridge/cabinets in a way that Jaymes can't undo? All the childproofing stuff out there is for babies. Jaymes still lacks any sense of self preservation, no impulse control at all... But he is 5, and he knows how to undo baby latches. I've asked therapists and doctors, and no one has any answers. Medicaid won't cover the costs of those safety things... But if something happens, no matter that you've asked time after time, it's because of the parent's negligence.
I disagree. Why don't we have someone making safety stuff for older kids and adults? Why doesn't medicaid cover it? For the same reason Medicaid no longer covers special car restraints. The program got axed. Funding was cut.
If only the Dept of Social Services would put money into preventative measures- safety locks and special car seats, rather than crucifying the parents when something happens.
They seem not to realize that Jaymes is a child who has no concept of self preservation. he would walk right into oncoming traffic if I let him. He would walk off a cliff probably. He would jump off a bridge, or go home with a stranger. He doesn't understand these things. the things that most kids just innately KNOW, Jaymes cannot comprehend. He will, hopefully, one day. He is smart, he can learn. But at this point in time, Jaymes is (safety-wise) like an infant.
So to all you parents out there of kids with special needs... Thank you for what you do. It truly is a higher calling, and though others do not understand, you are incredible. When accidents happen, I hope that you know it is not because you're a bad parent... it's because we are human. We can't predict every injury, every thought that might come into our kids minds. We can only do our best, make things safe as we can, and watch our kids. Accidents will happen, and we learn from them. Stay strong and remember that though others may not get it, other parents do.
Monday, January 12, 2009
Next order of business. Went to the Sally Rogers MIND Institute seminar on Early Intervention, Denver Model. Did not really pertain to Jaymes, as this was ages 0-3. My initial thought had been that well, Jaymes is around the developmental level of a 2-3, so the seminar's general theroies would apply. Unfdortunately, at the end, the speaker stated that by 0-3, she meant chronologically, not developmentally. Disappointing, but to be honest, I really think a lot of what she showed and talked about could very well be applied to Jaymes. A lot of it is just learning through informal play, arousing interest by being very "into it" as a parent or therapist. Things I can do! I've been trying a lot of what I saw in the couple videos she showed, and it works well to motivate Jaymes. I'm mostly applying it to meal times, because that's Jaymes' hardest at home activity.
My big complaint about that seminar is, they invited parents, and I'm not sure they should have. There were not very many, I don't think, it was really mostly speech therapists/OT/PT/Teachers. It was good, don't get me wrong, but very little was explained and some of the terms really stumped me. "Acquisition skill" being one of those. Would that mean a skill that lets you acquire something? Or the act of acquiring a new skill? I have no idea. "Intrinsic reward" "dyactic" and a couple others. I'm aware that I'm whining that the seminar was full of too many big words, though most of the technical language were things I have heard many times before from therapists, teachers, reading, or other blogs. I just would have liked to see her go into a bit of detail about some of it.
The food was incredible. I know, the food isn't supposed to be the highlight of the day. But yum. Club sandwiches on nice soft croissants, with really tasty multicolored pasta salad and cheesecake. Can't complain about that. Vegetarians had meal tickets so they would know not to give them meat meals, but long after we carnivores had been given our food, the veggies were waving their arms and looking desperate. They did eventually get fed, though.
All in all, a little boring in parts, but overall very interesting. I learned some good information and met some really interesting people. The Autism Society of NC is having a conference (actually parent-related, I believe) in March, which I hope to go to. That one is 2 days, but we'll work it out.
On to the poop. We'd finally started having some solid poop. So impressive. Very exciting for any of us, as you all know. Sadly, that went away and now we're back to melted chocolate oozing diapers of foul demonic nastiness. Same old, same old.
Jaymes has been doing really well. He's eating everything on his plate, so long as I sit with him and help him by reminding him "take bite". He's eaten carrots, potatoes, chicken, peas, lima beans (poor kid, mean mommy!), spaghetti-o's, pasta, egg, and even ate a hamburger yesterday! He is also doing a great job at home listening and has not hurt himself at all in I don't know how long.
I have to attribute the great eating habits to his wonderful OT. Rebecca has really gotten us over a hurdle that was making me crazy. I don't know how she did it, but she taught me and well.. He's eating. Awesome.
Walmart/any store.. still bad. Very very bad. He thinks it's a game to stand in the back of the cart with one leg draped out of the cart. People give me the nastiest looks, because clearly a parent who allows their 5 year old to dangle from the cart must be a cruel, sadistic person just waiting for the magical moment when the boy flops over and cracks his little head on the hard hard floor like a watermelon. Not quite. I flip the leg back in, he flips it back out. I ask him to sit, he sits for a second, pops back up, flips leg back out. I poke his leg, he yells at me and flips leg in. Then back out. With an ever growing smile of glee. Evil. It's a work in progress.
Went out to the Children's Museum yesterday, but got there too early. I've got to head out right now, and it's a long story that involves my fat rear end stuck in a McDonald's Playplace, trying in vain (and pain!) to rescue the stranded Sierra. More on that later.
TAKE THE POLL.
Sunday, January 11, 2009
Went to an early intervention seminar thing by Sally Rogers of the M.I.N.D institute in California.. was pretty good. More detail tomorrow or Tuesday when I feel better!
Jaymes has been doing really well. Eating his entire meals, including veggies and meat, playing nicely at home, not hurting himself, and being generally pleasant, Walmart trips aside. I'm veyr proud of him.
More on that later too.
Saturday, January 3, 2009
This bus service was a special needs service, how on earth does something like this happen? Thank god the poor man didn't freeze to death, but imagine his suffering until he was found. Someone better pay for such a sick "mistake." I hope the family sues the hell out of that company.
We've experienced this as well, though thankfully not quite so seriously. The first time, Jaymes' bus driver forgot to make his stop, because the other kids who get off with him were absent. He sat for an additional 20 mins until she remembered she needed to drop him off. The second time, Jaymes was almost locked alone in a bus at a high school.
His bus, 777, had broken down. Bus 223 was behind them, and stopped to help. They moved all the kids to the empty 223 and waited for the replacement bus. Replacement came, they moved all the kids to it and left. All the kids but one. 223 headed to the high school. The bus driver got ready to lock the bus up because the high school would not let out for a couple hours, and thank god Jaymes peeped over the seat (he was BEHIND THE DRIVERS SEAT THE WHOLE TIME) and said something. Otherwise he'd have been left ALONE in a bus at a high school.
It's shameful that special needs kids and adults go through situations like this. There is no reason. A simple tour of the bus to be sure it was empty would have spared that man in the article a night of misery. A simple 5 second head count would have spared Jaymes the stress of being alone on a bus, and he would not have come so close to real danger.
Every one of these companies and school transportation offices should have safety measures in place. They probably do, but what the hell good does it do if no one bothers to obey them?
Shameful. That poor man. It just really sickens me.
Edited to add: Even worse... A reader linked me to this article. They KNEW, and left him because the matron was late for church? Good lord. Sick sick sick.
Not all churchgoers are good people, apparently.
Political correctness is silly. I guess I'll stick to my guns and risk offending people. I would feel like a moron sayin in a conversation about Jaymes" Hello, this is my son Jaymes. Jaymes is differently-abled, and is a child affected by autism." Sounds weird.
I know, odd thing to muse about, but it's been bugging me. The only thing I really consider inappropriate is the R word. I tear into people all the time on my horse forum for using the R word, or making "special olympics" jokes. Those things piss me off. But I don't think stating that a person has a disability is offensive, and if it is.. Well, at least I'm being honest. I dunno.
On to Jaymes... He has had a good week, other than his eczema spiraling out of control. He is scaly head-to-toe. Took him out for his birthday, to Golden Corral and mboy would his OT be impressed. He actually ate a huge variety of foods. He had BBQ pulled chicken (first time!), mashed potatoes, fries, tuna (first time!), fried okra, a muffin, and some ice cream. He sat in his seat, used his utensils, and ate like a gentleman. I was so impressed with him. You should be too. Only we, parents of kids with autism (er... differently abled people affected by the disorder known as autism? politally correct? no idea) can fully appreciate small victories like this.
He has also started sleeping again. Thank god. I was about to drop, not getting any sleep.
A friend on another forum showed me this, and I thout I would share, despite Christmas being over. It's really appropriate, and I think you'll all appreciate it even if you've seen it before.
'Twas The Night Before Christmas - Autism
by Cindy Waeltermann
Twas the Night Before Christmas...
And all through the house...
The creatures were stirring...
Yes...even the mouse!!
We tried melatonin...
And gave a hot bath...
But the holiday jitters...
They always distract!
The children were finally...
All nestled in bed...
When nightmares of terror...
Ran through my OWN head!!
Did I get the right gift...
The right color...
Would there be a tantrum...
Or even, maybe, a smile?
Our relatives come...
But they don't understand...
The pleasure he gets...
Just from flapping his hands!
"He needs discipline," they say...
"Just a well-needed smack..."
"You must learn to parent…"
And on goes the attack!!
We smile and nod...
Because we know deep inside...
The argument is moot...
Let them all take a side!
We know what it's like...
To live with the spectrum...
The struggles and triumphs...
But what they don't know...
And what they don't see...
Is the joy that we feel...
He said "hello"!
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty...
Who cares if he's ten...
He stopped saying the same thing...
Again and again!!
Others don't realize...
Just how we can cope...
How we bravely hang on...
At the end of our rope!
But what they don't see...
Is the joy we can't hide...
When our children with autism...
Make the tiniest stride!!
We may look at others...
Without the problems we face...
Or even distaste!
But what they don't know...
Nor sometimes do we...
Is that children with autism...
We don't get excited...
Over expensive things...
We jump for joy...
With the progress work brings!
Children with autism...
Try hard every day...
That they make us proud...
More than words can say!!
They work even harder...
Than you or I...
To achieve something small...
To reach a star in the sky!
So to those who don't get it...
Or can't get a clue...
Take a walk in my shoes...
And I'll assure you!!
That even 10 minutes...
Into the walk...
You'll look at me...
With respect, even shock!
You will realize...
What it is I go through...
And the next time you judge...
I can assure you...
That you won't say a thing...
You'll be quiet and learn...
Like the years that I did...
When the tables were turned……!!
I love that, it's just perfect. I wish I'd had it in time for Christmas though.
In other news, i've been working my butt off on the website. I've added a links page that contains links to game sites appropriate for autistic children, and online stores that sell things like flashcards (Goosie cards, guys. GREAT cards.), therapy swings, therapeutic toys, and hippotherapy (horseback riding therapy) equipment. I have also been adding slowly to the state by state autism directory, but it would be a lot easier if some of you would either email (firstname.lastname@example.org) or use the contact form on the site to share links from your area. It's slow, but it will be finished eventually! I have also added the autism video library, where you can browse by category, or just look randomly through the videos. It is also a work in progress, if you have any videos you would like to contribute, please email or contact me through the form. All videos will be credited to you, and you have the right to have them removed at any time.
If any of you have websites or businesses, and would like to advertise on the website (not the blog, the actual site), please let me know. I am offering advertising space on the front page for $50 a month. I need some sponsorship to cover the costs of keeping the site on the web. Donations toward that end are welcome, the paypal address is email@example.com. People who make donations will recieve a car magnet with the DBTD logo on it, and of course my everlasting thanks!
Hope you all survived New Years, I've yet to decide on my resolutions, but when I do, rest assured you'll hear them.