Tuesday, December 30, 2008

The Big Five (pics before post because I'm THAT lazy)

























Five seems like such a big age! He's gone from my sweet little baby to being a "kid" now, hasn't he? I guess I should read up on the detailed classifications by age, because obviously my blog title has some issues.

This presents a dilemma. I like my blog name, I have no desire to change it. I'm also very lazy and do not feel like re-making the banner to reflect whatever new name I give. I also don't feel like thinking up a new name. In short, I'm lazy and hate change. Would it be ridiculous to leave it as-is?

Anyway, Jaymes had a quiet birthday. No party or friends, and Jason was gone all day at work. We played outside, jumped on the trampoline, visited Batty, played with the dogs, rode the new bikes. Jaymes loves Sierra's Xmas bike that my mother got him, and though it pains me to watch him ride a purple and pink bike with frilly streamers and princess stickers, it's a more appropriate size than the really cool boyish one my MIL got him. I think he needs to use the girly one (shared with Si-Si of course, since it's hers!) until he gets better at it. He actually fell asleep at one point, on his old tricycle. It was really funny.

My mom came over later with an Elmo cake similar to Sierra's Elmo cake, except this one was red while hers had been pink. It was very well done, and they had his name written in icing and sprinkles. I took some pics, then let them have 5 unsupervised minutes with the cake and 2 forks. Seemed like a fun free-for-all for them. Elmo looks pretty rough now, and it took an hour to scrub the icing off the kids, my camera, and the counter. They enjoyed it very much. The rest of it will be hidden in the fridge. lucky kid, got 2 beautiful Elmo cakes. We'll be eating it for weeks. I'll gain 15 pounds. Oh well, at least it makes for good breakfast food! (For me, not the kids, LOL)

Jaymes loved all his gifts. My mom got him a wall projector thingy that you put Viewfinder things in and it projects them onto the wall. (wow, what an idiotic sounding description, but how else do you describe it?) He loves it. He stares at it, and rubs the wall trying to figure out how it works. He also got some cute clothes. We got him a couple Thomas sets, which I assembled and superglued together today so he can play and not be tempted to destroy it. He's got a LOT of Thomas stuff now. Lucky boy.

All in all, a good birthday. He's getting so big and smart.. It's unbelievable.

Monday, December 29, 2008

Five years tomorrow...

And what a 5 years it has been. Jaymes keeps life interesting, that's for sure. I cannot believe my little baby boy is going to be 5! And while there is a hint of sadness that at age 5, he is like a slightly behind 2 year old... It's not worth obsessing over.

Jaymes is the cutest child on the face of the earth. Sorry, it's true. Can't deny what's right in front of me! Often his cuteness is what saves him. You can't be mad at that smooshy little face for long, and when he comes out of a time out and verbally assaults whoever times him out, in rapidfire gibberish, I just crack up. Jaymes is excellent comic relief, even when we're mad or he's mad. You should have heard him tell Jason off the other morning. It was 5 minutes of nonstop, stern, sometimes threatening sounding gibberish, intermingled with phrases such as "go away!" "go to bed!" "I want candy" "Want to watch elmo"and as it winded down, "it's ok, it's ok" to soothe daddy's apparently hurt feelings. Too cute.

He is the king of escape and destruction. He can get past any babyproofing you might do, get up to even the highest countertop or cabinet. He can unlock a door with keys, and he can untie knots that took forever to tie! He can enter a perfectly spotless room, and within 10 minutes, it'll look like a warzone.

He makes cool patterns with things. He takes his Sesame Street books and makes houses out of them (like card houses sort of), and takes cans from the kitchen to arrange into a double layered circle or s shape. He keeps everything lined up just so, and heaven forbid it get moved at all. Sierra loves to torment him by moving things when he's not looking. Makes him crazy.

A year ago, Jaymes ate nothing but nuggets and fries. No fruit, no veggies. No pasta, no meat. No milk, nor juice. As of now, Jaymes eats chicken nuggets, fries, apples, cheese, pasta, burgers, corn, hot dog, chips, crackers, cereal, oatmeal, yogurt, gummies, rice cakes, sandwiches... and more that I can't remember. It is so exciting for me to watch him actually eat a whole meal. He never did that before.

Jaymes no longer uses a stroller in public. One day he decided he was too big, and he walks (mostly) politely with us. He does feel he's too much of a man to hold mommy's hand, but we're working on that part. He still loves being kissed and snuggled and carried around like a little baby, but in the privacy of his own home.

He is so independent. When I take him to the bus stop every morning, I'm not allowed to touch him, or come onto the bus with him. he doesn't need my help, he's a big man and grabs his backpack and climbs those huge stairs all by himself without a backwards glance at me. He drinks from a cup, without spilling (unless he means to) and feeds himself with his fork. He carries his plates to the sink (when asked to!) and he knows which one is his. He knows where his seat is at the dining room table, and he also knows that he would much rather sit with his plate on the couch and watch Elmo while enjoying his meal, rotten thing.

Jaymes knows what he does and does not like. He doesn't like the cold. In winter, he won't go outside. But in summer, he lives outside. In his kiddy pool, walking the fence lines, jumping on the trampoline. All summer, he helpd me fill his horse's water bucket, turned on and off the hose when I asked, and pulled the wagon of hay over. He hates dog licks, but it's ok if he pets the dog first. He doesn't like his riding helmet, but he loves to ride. He loves neighbor kids, and wants to hold their hands and be babied. He hates books, but loves to build with them. Loves blocks, but only to put into bags and snuggle with on the couch.

He loves his blankets. Especially the pink one he stole from Sierra. I'm convinced the reason he is so attached to the pink one is simply the fact that it wasn't his and now it is. If he sees Sierra eating something, he'll eat it too, even if he hates it. It's priceless, watching him munch something that makes his face scrunch up in disgust, just to spite Si-Si. He's a goofball. He also loves anything pink for that same reason- because it's Sierra's. He sits in her new pink chair and just lounges, while looking down on the rest of us with distaste. He knows he's the king of the house, that despite anything we go through and anything he does, we'll love him unconditionally and never stay mad at him. Jaymes loves his swing, and he loves his music. He can focus and talk more while he swings. It's incredible. He loves to tell me his body parts, colors, and numbers while I swing him.

Everyone who meets Jaymes loves something about him. His pretty eyes, his dark hair, his pretty long eyelashes. His cuddly little face, or his contagious giggle, or his oh-so-serious gibberish lectures. He's a pain in the rear, but he's squishably soft, adorable, and handsome. Trust me, you can't resist him. Even seasoned child haters like Jaymes most of the time.

And me... He's probably going to have me with entirely grey hair by the time he's 8, and minus a few screws. Might be a little insane, and for sure tired. As it stands, no one in this house has sle[t in days thanks to Jaymes. I can't go to Walmart without people giving me dirty looks at Jaymes screaming, or flailing on the floor. I get CPS called on us because Jaymes did something that could have been bad. So much more paperwork, stress, and work than other kids.

But so totally worth it. Jaymes is the light of my life, the reason I'm here. He keeps me on my toes, and he has made me a stronger, better person. Even when I'm stressed and angry, I can't help but smile at something he does, and somehow it makes it all better. I am so blessed to have been given the gift that is my little buddy, and everyone who knows him is blessed as well.

Happy almost birthday, my little monkey. No one on earth is so lucky as I am.

Well this sucks!

Sleep. I miss it. Oh so much.

Jaymes and Sierra no longer do it.

All week, since that goddamned CPS worker came, Jaymes has refused to sleep. He goes down at midnight, at best and is up by 4am. He keeps Sierra up, so now she's doing it too. They go back and forth, so we don't even get that 4 hours to sleep. I would say since Xmas Eve I've gotten maybe.. 6 hours of sleep period. I can't think straight.

-yawn-

Whoever you are who called CPS on me, I hope you suffer from insomnia for the rest of your life. Seriously, I hope it was worth it to pull such a nasty stunt that cost me my sleep, Jaymes his peaceful Xmas, and my mother the cost of fixing windows. Fucking moron.

Saturday, December 27, 2008

Weirdness...

I'm beginning to wonder if maybe the Clondine is having more bad effects than good... I've noticed a HUGE increase in autistic stimming behaviors since we started him on it. Head shaking, hand flapping, wheel spinning, rocking, weird eye movements. Usually, if we're out at say, Walmart, no one can tell he's different. But acting like this, people are giving us the oddest looks, even when he's behaving. I'm not happy about it, people tease him as it is, he doesn't need more.

He also stopped sleeping. During the night anyway. He takes several naps wherever he happens to pass out during the day, and keeping him up is difficult. We've cut back the meds from 4 times a day back to 3. Maybe back to 2. We'll see.

I'm exhausted and have a horrible headache. I NEED sleep. Very badly. Took a nap when the kids did today, which was good. Tomorrow too, because i know he won't be sleeping. Darn children. Oh well, on the plus side, makes it easier to get up for his bus!

In other news... Still can't figure out who called CPS, but it wasn't Dr. Carter. I have no idea. I only told a couple people what happened with Jaymes' window, and I know my mom and Jason's mom are better people than to risk the kids. Neither would ever do something this horrible.

Friday, December 26, 2008

Could have been bad... The "calm" version

Got my irritation out earlier, now I'll rewrite it minus the name-calling and annoyed tone.

At some point this week, someone filed an anonymous letter or email with CPS, and on Xmas Eve I had an agent out to check us out. It went well, the house was clean, kids clean, etc. She was confused as to the allegations of "parents locking children in their rooms all day and night" because neither child's bedroom door has a lock on it or on the doorknobs. Pretty much made the person who filed the report look very foolish. Agent told me I was doing a great job, and that she was confident in saying that I did not seem to be having a breakdown or mental illness issues as the bright soul who sent in the report had stated.

I do not know who filed it...

... Some random person we recently met. I do not think it was Jason's mom, she isn't capable of such nastiness. My mom isn't it either, because she would not stoop to such a level, nor would she risk the kids that way. She wouldn't let Sue do it either, because that would be the same risk to her.

It's tricky with my situation. If the kids were to be taken (which they would never be, obviously), Sierra would go to Jason's mother. Jason works with these people, and basically when they take a kid, the parents get to choose a place with a blood relative and if it's suitable, then their choice takes priority. Jason's mother is blood to Sierra. Jaymes, however, would end up in foster care. His only blood relatives are Mark's family, and they would not want him, nor would I let them have him. So he'd end up in foster care, and it would be beyond detrimental to him. Angry though she may be at me, my mother would never harm Jaymes that way.

It could have been a doctor's office, but usually they'll tell you that they did it or are going to do it... I'll be asking around a little.

I think it's really pretty humorous that this person reported us, not knowing that there aren't locks on the kids door. The look on the CPS person's face was priceless when she looked at the doors and was like "... But there are no locks? How do you lock them in all day and night?"

HMM. Doesn't some anonymous person look silly. She told me that I was doing a great job considering how much I have on my plate to deal with, and "hats off to you."

I wouldn't really care about this so much, but I think that it was not a doctor, but a person who knows us somewhat... And the fact that they would risk my kids safety and well-being in such a cowardly, pathetic way disgusts me. Anyone who knows us well knows we have tons of people in and out of the house on a constant basis, and that we have TONS of doctors/therapists/etc to back us up. If I were abusing my children, don't you think someone would have noticed, being in the house? Again, this person who made the report made themselves look like an idiot. That part is very satisfying, and knowing that if they report again, it won't be taken seriously. The part that is NOT amusing, however, is how scared Jaymes was to have a stranger in his house. He doesn't do new people very well, and normally they come to the house when he is at school. He cried for hours after the CPS person left, and would not sleep that night. He still has not slept all night. You can't do that crap to Jaymes. He should not have been put through that on Christmas Eve.

Really the only thing that came of any of it is that my landlord (mother) is now required to replace the windows that Jaymes could have been hurt on within 14 days or they will report her to the housing people. I feel bad for my mom, to be honest. She ended up with worse consequences for this false report than I did!

Anyway, what's done is done, it's over with and we're obviously still with our kids. The worst part is not knowing who it was, because I'd love to rip them a new one, laugh at their stupidity, and remind them that they'll never see either child again. of course, if it's a doctor they won't care about that, so it would be pointless anyway.

Thursday, December 25, 2008

Christmas is here... And sadly, almost gone already!

Jaymes loves Christmas. He has officially learned that there will be gifts, and that getting up a 5 is a great idea and that he also should rip open all gifts regardless of whose name might be on them. Should have seen the disgusted look on his face when he opened the clothes I picked out for him though. Typical boy, I guess. Sierra thought her new clothes were cool, but then she loves to try everything on. Jaymes got a lot of Thomas stuff, so he was in train-heaven. He spent a lot of his day building track. I moved the train table to his room, hopefully he won't wreck it, but if he does, I guess it's not the end of the world. He liked to lie on top of it while he builds. Jason was getting frustrated because he'd gotten it all built for Jaymes (we only have him the one playset, the rest are being saved for his birthday) and set it up, and Jaymes ripped it apart to build it himself.Of course he didn't do it right, which made Jason's OCD go crazy, but I told him to let Jaymes enjoy his gift and Jaymes happily built track. Might have to superglue stuff though, Jaymes keeps removing batteries from the one train.

Did not give him the bike from Marie (MIL) yet, because it was rainy and nasty out. I will probably show it to him tomorrow if the weather is nice. It's gorgeous- brand new, shiny, red rocket themed bike with training wheels. Very Jaymes. Hopefully his legs are long enough to use it if I put his special foot pedal adaptor thingies on it. Jason's mom also got him some really cute clothes, but for whatever reason got size 5.. He's a 2T, so it'll be awhile before he can wear any of that!

He ripped into his stocking, expecting candy, and was just as happy with his organic, dye-free, sugar-free, gluten-free cookies as he'd have been with candies. The cookies came in a reusable tin with a handle, sesame street themed. He loves it. He can take his snacks for therapy day in that. He also got a toy tool set, which he loves. He spent about an hour trying to screw a plastic screw into his bed frame. He also wanders around the house whacking the walls with his plastic hammer- a big improvement over trying to whack the walls with the REAL hammer.

He ate mashed potatoes and rolls, but had no desire to try the ham or anything else. I did the potatoes and my cranberry orange relish (YUM) and Jason did the ham. He did an awesome job, best ham ever. The sweet kind, with cinnamon/brown sugar glaze. It was reallllllly good. I love sweet ham. He prefers the salty ham, but he seems to like this one just fine. Sierra didn't like the ham I guess, she chewed pieces up and spat them out. Oh well, least she tried them.

Took the car in to the repair place yesterday. Shockingly, at 12K miles, it's alreayd having issues. That's my luck. The radio has some electrical thing wrong, so they ordered the part and will replace it sometime next week when Jason can get out there. We'll have them look at the driver side window and check engine light too. Gotta love having that bumper to bumper warranty- they don't even ask your name, just fix the car.

What did I get for Christmas you ask? Well! Jason did good. I got a new showerhead thats all massaging and awesome. Very relaxing, makes taking a shower very peaceful. It also doesn't squirt water everywhere like the one we had there before! He also got the obligatory shower junk- lotion, body wash, etc... Got a cute MP3 player, not Ipod quality, but just as good considering. It holds like 200 songs, and it plugs INTO our car and plays through the sound system. Even though the radio is broken in the car, I can do the volume using the MP3. How neat is that? Also got Eeyore pajama pants. I love pajama pants! and some nifty aloe infused fluffy socks, very very snuggly. Got some other stuff too, can't remember everything. Jason loved his coffee maker and Dunkin Donuts coffee and his superhero boxers, and new razor...ect. Got him a DVD he wanted too.

Echo and Midnight got a chewy toy that opens up with velcro. You shove old water bottles inside, the plastic kind, and it makes the coolest crinkly toy that drives them insane. They also got beef rib treats, spoiled things. The cat and rats didn't get anything. Took a bunch of apples to Batty.

All in all, I'd say the kids had a good Xmas. The adults... Not so much, but I love my gifts and Jason did good. He loves his stuff too. He has a hard time remembering it's not all about presents though. His mom gave him some godawful ugly shirts, I'm going to laugh at him when he wears them.

I've got a hell of a story for you all about Christmas eve and our visitor, but I'll save that for tomorrow. Christmas day doesn't need that negativity.

Oh, and soon I should have my replacement laptop from Dell. They finally relented when they got sick of spending hours each day on the phone with me trying to fix the piece of crap. I think someone spat into it on the assembly line or something. Takes 10-15 times to get it to turn on, most of the time it gets there then the screen goes black. Pain in the butt. They said I should have my new one within a week. i can't wait. Can't install anything on this piece of junk, it can't even handle Java, which means ot Limewire, which means no new music for my new MP3. Meh.

Tuesday, December 23, 2008

Notice- Important!

As most bloggers do, I have a site tracker that shows me who accesses the blog and my website. It tells me locations (right down to street names, how Big Brother is that for ya? Don't worry, I can't afford to stalk any of you!) and assorted other information. Due to some behavior that I feel is damaging to my blog, and more importantly to my website (which I hope to be a great resource when finished up!), I will be IP banning all users from the following areas:

-Greensboro, NC
-Raleigh, NC
-Durham, NC


Among others. It is my hope that the problems will stop once the site is inaccessible. If you live in one of these areas, or nearby, and end up blocked, please contact me either via the form on the page you were redirected to, or via the contact form on my website (no one will be banned from that) with a little info so I know who you are, and I will unblock you immediately. I will need your IP address to do this. I would hate to accidentally ban someone who really appreciates the blog!

I also totally reworked the site navigation and it looks just awesome.

It is COLD.

I'm beginning to wonder if we might end up with a white Christmas. It went from sweatshirt weather to full on frozen misery weather in like 2 days flat. The mud is frozen solid out there, the grass breaks when you step on it. My dogs do not have any desire to go outside, and I cannot honestly blame them. I hate going out there too! It supposedly hit 16 degrees last night. I believe it, with how cold the house got. I don't even want to think about what the electric bill for this month will look like. Chunks of ice came out of the bathtub faucet... I hope this doesn't mean the pipes are freezing. Seemed to be ok after awhile though.

Hauled another load of toys to Goodwill, and I'm feeling better about the mass of STUFF my kids have accumulated. Now they'll have room for the stuff they'll get in a couple days. I cannot wait for Jaymes to see the cool Thomas Train stuff. He'll be SO excited.

Need to get a new calendar. Jaymes has all these appointments in January, and I just have them written on the side of December. He's set to see the dermatologist on the 2nd, for his godawful eczema. I hope they can do something for him. It's a pain to lotion him 3 times a day, plus the oral antihistimine. Crazy. And he remains somewhat scaly. This NC winter air wreaks havoc on his skin. He never had issues back home, maybe the humidity? He also sees his psychiatrist/developmental pediatrician later in the month for a med check. They've had me take him from 2x a day to 3, and want me to try 4 but I'm not sure I'm comfortable with that. We discussed adding Risperdal back, as the Clonidine wears off quickly and causes big mood changes. One minute he'll be calm and sleepy, the next he's super hyper and aggressive. the Clonidine may end up not working out, but as Dr. K says, we have to give it all a fair trial.

Sierra sucessfully removed every label from every can in the house, and I'll admit it.. I didn't stop her. It was making her so happy, and they've been going nuts in the house with very little to do. Too cold to be outside, and inside is not much fun. Maybe later we'll do some fingerpainting. People seem to love kid made Xmas cards anyway. They won't make it in time, but what can you do...

Sold something on Ebay and am waiting for the person to pay me so I can get my last batch of gifts. Need to buy for my friend Julie in FL (who sent me the awesome stuff that Jaymes ripped open!) and my grandma. She's kind of hard to buy for, I don't know what kind of things she likes. I'll figure it out though. Hope no one minds new years gifts instead.

I caved in and gave Jaymes one of the Thomas sets to play with. We'll all go nuts if he stays so bored. He's very happily sitting on the couch watching Elmo and piecing together train track. It was the smallest set, only track, so it wasn't too much of a spoiler. He could spend days arranging track and not get bored. It's good fine motor play, I would think. Later we'll crack out the swing and get him nice and relaxed. I wish the kids would get along enough to swing together, then one wouldn't have to have a fit while the other swings!

Christmas is coming! We're doing our best to get in the spirit, between talking to lawyers and Jaymes' social worker. Hopefully by tomorrow we'll be in the mood to have a very happy Christmas Eve and then the big day!

Decided that rather than have a home party for Jaymes, we'll take the kids to Sciworks and get a cake from Walmart. Clearly, my New Years resolution does not involve weight loss. They make the most delicious marble cake. We looked at designs the other day, and are trying to decide between a really cool one with Elmo sitting on the beach, or a construction crew one that is really colorful and has little toy construction stuff on top. On one hand, he LOVES Elmo, and it does have a rubber Elmo for him to keep. On the other, the construction one is beautiful, and has 3 toys on it. Decisions, decisions.

Monday, December 22, 2008

Autism and Christmas

Christmas for those of us with autistic kids is always interesting! No boring traditional crap for us, nope. First off, we like our humor. Like this gem:

Christmas Carols for the Psychologically Challenged

  1. Schizophrenia -- Do You Hear What I Hear, the Voices, the Voices?
  2. Amnesia -- I Don't Remember If I'll be Home for Christmas

  3. Narcissistic Personality Disorder -- Hark the Herald Angels Sing About Me

  4. Bipolar Disorder (Manic Episode) -- Deck The Halls And Walls And House And Lawn And Streets And Stores And Office And Town And Cars And Buses And Trucks And Trees And Fire Hydrants And.......

  1. Multiple Personality Disorder -- We Three Queens Disoriented Are

  2. Paranoid -- Santa Claus Is Coming To Get Us

  3. Borderline Personality Disorder -- You Better Watch Out, You Better not Shout, I'm Gonna Cry, and I'll not Tell You Why

  4. Antisocial Personality Disorder -- Thoughts of Roasting You On an Open Fire

  5. Obsessive Compulsive Disorder -- Jingle Bells, Jingle Bells Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells

  6. Agoraphobia -- I Heard the Bells on Christmas Day But Wouldn't Leave My House

  7. Alzheimer's Disease/Senile Dementia -- Walking In a Winter Wonderland Miles from My House in My Slippers and Robe

  8. Oppositional Defiant Disorder -- I Saw Mommy Kissing Santa Claus So I Burned Down the House

  9. Social Anxiety Disorder -- Have Yourself a Merry Little Christmas While I Sit Here and Hyperventilate

  10. Attention Deficit Disorder -- We Wish You......Hey Look!! It's Snowing!!!

Now then... On to the more serious stuff. How do you all do your tree? Normally we get a normal sized tree, however this year the mice ate last years plastic tree and so I picked up a 4 ft plastic tree. We use all plastic/stuffed ornaments, no glass allowed. Last year we tried doing glass ornaments and using twist ties to hook them to the tree branches, but a lot broke so that was decided against this year. Well, that and the fact that the tree is so tiny, only a few ornaments fit. Personally, my favorite thing about the tree is the rainbow lights, so everything else is optional anyway.

Presents have to be wrapped and stashed immediately. Jaymes can smell a present a mile away. You'll set it down for all of 2 seconds to do something, when suddenly you hear the pitter patter of little feet, then the shredding of paper rivaled only by a rabid wolverine tearing through a paper company. I have them in the locked bedroom this year, and there have not been too many unwrappings! It's funny, looking back. Jaymes used to have zero interest in opening gifts. Last Xmas was when the fun of it really caught on with him, and Sierra copies everything he does, so it works out well. But it sure would be nice to have presents under the little tree. Or maybe not.. I can't imagine much of anything will fit beneath it's diminuative branches.

Jaymes is a candy cane freak. As he is on that no red dye diet, it pisses me off to no end when well meaning relatives give candy canes. It's like wrestling with an angry polar bear to get one away and I feel just horrible for it. Family doesn't get that restrictive diet thing, there is no desire to learn or show respect! Makes me crazy. Anyway, everytime we go into the bedroom, it's a mad dash to go in or out without Jaymes streaking past and grabbing a handful of the forbidden candy canes. I should just throw them out, but then he'd dig through the trash... Besides, Jason likes them. My house is -supposed- to be a candy free zone. However, the combination of my mother, Jason's mother, and Jason's own sweet tooth are bending that rule to the breaking point. At present all candy is up so high I have to climb a chair to get it down. Seems to be working.

I love wrapping paper and bows. I swear, one day I will win the lottery and the next Christmas, watch out! If funds permitted, I imagine I'd be a LOT like my favorite blogger Kelley with her Xmas crazy. I ended up just getting one giant roll of cute reindeer cartoony paper, it was plenty for what I needed to wrap. I really love the shiny sparkley ones. Which gift wrap makes you go "oooooooh!"?

I'm undecided on how I'll be handling gift time on the big day. For Jaymes, opening it all at once is really too much. Too much chaos, too many things to play with. He tends to get overloaded quickly, then we have an angry boy all day long. I'm thinking maybe we'll do a couple gifts a couple hours apart. They don't have that much this year, but more than last year. I feel like they have too much crud they don't play with, so we got things that will be a huge hit. Thomas the Train stuff for Jaymes, Elmo and baby dolls for the little pink devil. DVD's for Jason. Never as much as I wish I could do. I'd love to be one of those people that spends $500 per person... But you know, it's not what Xmas is about.

I took a huge load of old toys and clothes to Goodwill the other day, and lo and behold EVERY closet in the house is spotless. I'm very pleased with myself. Clutter makes me nuts.

Oh, one Christmas surprise for me... Dell finally admitted that my laptop is a worthless pile of junk and is REPLACING IT!!! It should be here in the next ten days, and then I mail my paperweight back to them. I'm thrilled. I plan to get the extended warranty at tax refund time, so that I don't have issues again.

I got one Christmas gift early, and it is a wonderful one. Jason got me a new dog! A big black one! He had planned to leave early morning and pick her up so I'd have her "under the tree" but unfortunately a family misundestanding ruined the surprise and he had to tell me. On the plus side, I got her a few days ago and I just love her. She is black and longhaired, with a face similar to Chancies. Here she is!


She's very very well behaved. She knows how to shake hands, and she is pretty reliable off leash. She and Echo love each other already. She'd make an excellent therapy dog actually. I love her, and it makes me feel SO much better with the pain of Chancie's passing. Best gift ever. Would have been a cool surprise, but Jason tried. He even thought to ask permission ahead of time from the landlord. Merry Xmas, what a great gift. Jason did good.

Got some cards from internet friends this week, including one from Australia! It's a gorgeous drawing of a reindeer made by her talented little girl who is Sierra's "name twin". Her name is Sienna. How cool is that? Also got a funny one making fun of someone who annoys me online, it makes me crack up everytime I see it. And a cute ducky one, and one with three singing rats. I drew some horsie ones for some folks from my horse forum, but due to lack of time, stamps, and energy, some might not make in until 2009. But it's the thought that counts, right? Gotta get some Ebay crap sent out as well (yay?). Made $50, to put toward rent probably

My friend Julie (from the Earth To Brandon blog) sent us a box of gifts that I had not planned to open till Xmas, but Jaymes had other ideas and went into paper shredding mode. I got a really awesome horsie picture frame, a horsie box thing that I'm hiding all my cards and driver lisence in so I don't lose them, and a beautiful blanket with horses on it. I LOVE it all. (note to self- email Julie and say thank you). Jaymes got a Sesame Street DVD that he is currently glued to. Sierra got a baby doll with some cute accessories. The second she saw what it was, her mouth dropped open and she screamed "BABY!!!" Julie is awesome. Very very awesome. I'm late on gifts that have to be mailed out. No way they'll make it for Xmas. Can't be helped. Hope people forgive me!

Ok, I've rambled a long time here... Anyway, I'm working on ignoring my family's mental breakdown, and enjoying the holiday. Hope you all have a wonderful holiday too! Gifts and food and togetherness- hooray! And a fresh new start in 2009. We all need a fresh start.

If I don't post again before then, have a merry Christmas, happy Hannuka, kwanzaa or whatever else you may celebrate. I hope we get some snow! My piece of garbage laptop is unreliable at best, and often refuses to turn on, so I may well be computerless. I was computerless all morning, and it irritated me as I needed a phone number.

Er.. Rambling again, Happy Holidays, hug your kids, and ignore the holiday grinches!

Friday, December 19, 2008

Every day a new lesson...

To keep the peace, I've deleted this. But it does not mean I take back most of my venting. I rarely tell the person I wrote this about how I feel, or how she has made me feel over the years, and I think it needed to be said.

Been said, so we'll leave it at that.

Moral of this story was that Thanksgiving, gravy, obese dogs, and a picnic table in the cold are a shitty way to show you care.

One of those gooey end of the year summaries

My grandma (and so many more organized people than I) does a Christmas Letter each year... It's one of those "I did this, this and this and here are pics of it" type things. I, however, have never been the type for that sort of thing.... But, I'm at a stressful time of year for me, and in need of some positivity and some insight, so here I go! It'll start out as usual, but I promise, positivity will win out as always.

2008 was a crappy year in soooo many ways. We actually moved from Florida to North Carolina at the end of November 2007, but it's close so I'll count it from there. I often think that our choice to move to be closer to my mother was a stupid one. We were not in good money shape to be moving 2 states away, and we had gotten to a point of being entirely independent of my mother's help. It seems small, but that's a major thing. We get along best when neither has anything to hold over the other. So we moved... To a house she owns.

Anyway, got settled in and everything, which is great. Jaymes started up with his Speech and Physical Therapists just after Xmas (I think). I feel like we really won the lottery as far as therapists go. Shawna is incredible, she pushed through Jaymes initial period of non-progress (he does this to every new therapist, and they usually can't handle it.) and has really accomplished a huge amount with him. Jaymes has learned his colors, shapes, letters, and some numbers. I'm so impressed. He went from pretty much nonverbal to asking for things. "I want cheese." "Want to watch Elmo." Just awesome. That stuff is priceless. Well, ok, Medicaid might disagree there, but that's their issue. April, Jaymes' PT, is also awesome. Jaymes balance and play skills have really grown. He can kick a ball, throw one with -some- accuracy, his balance is SO much better...

We met Jaymes' OT much later, there was a heck of a waiting list for OT. She is also incredible, and has Jaymes eating pasta, hot dogs, apples, some veggies, pumpkin pie... Things I never could manage to get him to do myself. She has taught us about the brushing and joint compressions, which will calm Jaymes most of the time. Even at Walmart. People sure do look at us funny though!

Jaymes started his first NC school, Hall Woodward... Which was a disaster! His teacher and I did -not- get along, his bus was hideous unreliable, even after a month of waiting for one to be assigned, and the school itself was.. Well, bleh. Not a nice neighborhood, not what Jaymes needed. We switched to Cash, and I'm so pleased. Last years teacher, Mrs.Presnell, was great. This years is even better. Mrs. Williams is kind and loving toward Jaymes, but she still makes him do what he needs to do as well. He likes her, and he loves school. His bus drivers this year are also pretty good, other than the one incident where they lost him.

Yes, lost him! Apparently, his bus, 777 broke down. So bus 223 stopped to help and they moved the kids over to 223. When the replacement for 777 arrived, they moved the kids to it, and the driver of 223 left to the high school to wait for them to get out. She went to get out of the bus and lock up and suddenly she hears a tiny little voice. Yep, they forgot to put Jaymes on the new bus. Thankfully, he was fine and it was an adventure for him. I didn't raise hell about it, it was kind of funny and no harm done, but boy if it happens again! Count heads, folks.

Jaymes' health has improved very much. When we left Florida, he was having fevers regularly, almost daily. He was sick with sinus and ear infections more time than he was well. In January, he passed out on a dog walk and stopped breathing. We think it might have been some sort of seizure or something, but no one ever figured out what happened. Poor Jaymes.

He has not had a sinus infection in months. His ears remain a horrible nasty mess, but his tubes from March remain intact and doing their job. No more fevers!!!!! Dr. Helgemo back in FL would be so happy!

Jaymes' skin is the only thing that has worsened really. He developed severe eczema, over his whole body. It takes lotioning him with steroid cream 3 times a day, plus an oral antihistimine to keep him comfortable and minimally scaly. But that's a small price to pay, considering.

Last Xmas, we bought Jaymes a mini gelding, but due to his behavioral issues, sold him. Later we got Buddy, an old, emaciated Thoroughbred gelding who we all loved. Buddy's time came a month or so ago, though. Jaymes and I miss him horribly. I'm working with a batshit insane gelding named Batty now, who I just looove. He's so pretty, and he's a sweetie under all that batshit crazy.

Thanksgiving was a disaster, but we kind of expected it... The disrespect we were treated with floored us, and Jason and I agreed never again. From now on we do holidays at home, where my kids can be indoors and not shoved out at a picnic table in the cold. I feel for my mom.

Xmas will be just us- the 4 of us. I'm kind of glad, I don't want any negativity on Xmas and Jaymes' birthday. We'll just have our own quiet fun, and enjoy each other's company. Maybe I'll try riding Batty again. Who knows.

The worst thing that happened this year was having to put my beloved dog Chancie down. Hardest thing i have ever had to do, and the house still feels so different without her here.

The best thing to happen... Well, we paid off our bankruptcy! All done! No more $200 payments each month, no more asking permission to move/sign lease agreement/etc. Always a good thing. I'm proud of us for doing the CH13 and paying off, rather than the CH7 and just giving up.

Anyway... Not the syrupy sweet letter that most of you send out to people... But an honest and accurate one. Life's not easy, it isn't supposed to be. It would be meaningless without some sort of struggle.

In the end, the good and the bad have taught me that regardless of what others think of me and my family, we're not trash, nor lazy, nor worthless. We work our asses off in our own ways. Jason works himself to death at his job... I do more than most people can imagine here at home with the kids. The people who treat us like mud on their boots... Try raising a disabled kid, then get back to me.

So here's to hoping for a better year, more success for Jaymes, a little break for me. We're working on a lot of good things with Jaymes case manager... who by the way is the BEST case manager ever, and we love her and would be lost without her! Jaymes has a great group of people working with him and for him, and we cannot express our thanks enough (Dr. Albright, Dr. Klinepeter, Shawna, April, Rebecca, Julie the superawesome case worker, the nice lady at Easter Seals whose name i cannot remember... Even you, lady at ciCi's pizza whose name I also do not know but who helps jaymes get his pizza every time we go!)

Yay for good people, good food, and rotten children. Merry Christmas or whatever other religious holiday you observe.

Tuesday, December 16, 2008

I dunno...

Maybe I celebrated the Clonidine success too soon? I guess I haven't thought as much about it as I should. School wasn't too impressed with the spawnlet today... She gave him a "2" which means "ok day." He's never, ever, ever gotten anything but a "1" for " Good day" which means he had to have been quite a pain in the rear. She said " Jaymes has been very wiggly lately. today he had a hard time sitting and attending." The Speech therapist at school said "Not attending to speech tasks today... Hitting self. He will not use his words like he was doing a couple of months ago."

Not good. Seriously, the school has never, ever said a negative word about him. Thats why I'm a little worried. He has been kinda... energetic and goofy lately. I dunno, maybe it's because I'm seeing that nice peaceful hour or so when the Clonidine sedates him so am willing to not notice the hyperactivity. I need to do the whole pros/cons thing.

Pros:

  • Seems calmer about an hour after taking the meds. Calmness lasts about 1-2 hours.
  • Heavier med makes me feel like it must work, it's stronger than the Risperdal, right? (Yes, this is a bullshit theory but it makes sense to me.)
  • Doesn't seem to bother his tummy or cause headaches- MUCH less stomach upset than Risperdal.

Cons:

  • Hyperactivity reigns once the hour of sedation wears off.
  • Pill is a pain in the rear to cut into 4ths, dosing is never quite accurate because the pieces break unevenly.
  • He's stopped developing as quickly, as far as speech goes. He is not using his words anymore (at the prior frequency anyway).
Meh... I don't know. Higher dose? Try another med? Anyone?

Oh Clonidine, oh Clonidine, how lovely are your effects!

Jaymes is doing very well on his Clonidine. I was worried that it would sedate him too much, and for the first few days, it actually did. However, he seems to have adjusted very well, and it's made SUCH a difference. We still have screaming fits, don't get me wrong. I don't expect perfection. But the child who previously could not sit still long enough to take his meds, can now sit and watch Elmo on the couch and snuggle for the entire movie. He still lines up all the canned goods in the house while watching, but he sits for the most part and really attends to the movie. We love Elmo in Grouchland- excellent movie. Great music.

Jaymes hasn't really been talking... I don't know if it's a side effect of Clonidine (I doubt it, honestly) or if it's just a phase. He's been refusing to talk at school, and at therapy. But when he does talk, it seems to be pretty much just "Want to watch Elmo." At 6am this morning, getting dressed for school "want to watch Elmo." At therapy (where obviously there is no Elmo nor any TV) "I want to watch Elmo."

It's great talking, really is. But I wish he'd come up with some more original things to say, because at this point, I'm aware that his mission in life is to watch that Elmo DVD a million and one times before he turns 5.

Yes, my boy is almost 5! Can you believe it? Time flies, it really does. It seems like just yesterday I was snuggling Jaymes' little 5 pound body... Before the diagnosis, of course. We've had such a wild ride this last almost 5 years... Crazy. But totally worth it.

Jaymes is a great kid. He's adorable, he's smart, and he's my little buddy. His skin has been horrible, his eczema has been making him crazy. His teacher called me to say he was itching at school. It got so bad he was red scales head to toe- even in his diaper area. He would wake at night crying because it itched so bad. Doctor gave us an oral anti itch/antihistamine, and more medicated lotion. His skin is the softest it's been in a long time. Almost not bumpy. It's nice. He's feeling a lot better. He's got a dermatologist appointment in January to see what we can do for the poor little guy.

Oh, and by the way, we have -the best- caseworker ever. Be jealous.

Wednesday, December 10, 2008

America's Got Talent...Or do they?

I'm hoping that blogging will help me forget about losing my Chancie dog, as nothing else is working. I feel like i can't function normally... Can't look at the couch where she slept, or at the grave where her poor sweet body is, or at the dog dishes... I was calm finally yesterday and then a florist came with flowers from the vet's office. Nice, I know, but I lost it again. The flowers are on her grave... My other dog, Echo, is depressed. She won't eat, and wanders the house looking for Sweaterdog.

Anyway. Blogging about things that irritate me tends to make everything else go away, if only as long as I'm actually typing out the post... Any respite from my sadness is great. So here we go.

Why, on shows like America's Got Talent, is it such a big deal if a contestant is autistic, or has an autistic sibling? I've seen so many people post on their blogs "so and so contestant is autistic! I vote for them!" or "He's got an autistic brother, everyone needs to vote for him!"

I remember the little boy on AGT, he was adorable. don't know if he won, I don't watch that stuff. I just saw it on a youtube video. I thought it was an absolutely cute song, and was thoroughly impressed at the kid being able to go on stage and sing, autism or not. Good for him! But really... These shows are a contest. I know if I were a contestant, I'd rather win because I -had- talent, not because I had a disability or knew someone with a disability.

These shows are often based on a viewer voting system, aren't they? Isn't it kind of stupid to vote for someone in a way that has nothing to do with how well they did? Could I go on the show, and sing in my horrible off key voice and win because I have an autistic child? Because ya know, I could use the money. Is that really how it works?

I'm curious (not curious enough to look it up, mind you) as to the background stories of those who win these shows. Remember Fantasia, on American Idol? Great example of a sad, sad backstory, PLUS real talent. Maybe no more talent than thousands of other girls with equally depressing stories, but talent nonetheless. She ended up with a Lifetime movie based on her life- crazy! Do you think she would have won Idol if she were from the private school, trust fund crew? Not knocking Fantasia, she was talented, she probably deserved to win.

I guess my feeling is that these people should be judged on their actual talent- not their misfortune. It's not a big contest to see who's got the more horrific past. You can overcome a shitty past, and you don't need Idol or AGT to do that for you. True, money is nice, but you can still overcome things without the green.

Those of you who watch these kinds of shows- what do you vote based on? Looks? Age? Singing voice? Behavior off-stage? Religion? Color?

Tuesday, December 9, 2008

Chancie...

This morning my beloved old Sweaterdog, Chance, passed away. I took her to the vet and he agreed that at this point euthanasia was the kindest option for Chancie. I paid extra for sedation prior to the injection, so she could fall asleep and pass in her peaceful sleep.

She fell asleep in my arms, her little faced squished under my chin. It took about ten minutes. She was calm and comfortable, wrapped in her blanket, snuggling with me. When she was asleep, the vet gave her the euthanasia, and she was gone within a few seconds. There was no pain, no twitching, none of the awful things I have seen dogs do as they die... Only peaceful rest.

I have never had to put a dog of mine to sleep. It was horrific, and I did not even realize how truly devastated I was until afterward. All I can think of, all I can see in my mind, is her sweet, trusting eyes... She trusted me... And I basically killed her. I did it for good reasons,but I caused her death, regardless.

No, she had no hope of being pain free, and she would not have gotten any younger... But the thought that I was the one holding her as she died horrifies me.

I drove home with my hand on her still warm body... I scratched her ears and cried, and told her how sorry I was. I carried her out of the car, and Jason said his goodbyes...

I can't think about when we put her in the hole in the cold ground, or when we covered her over with rocks so nothing will dig her up. Every time I walk past her grave, my throat closes up and I want to curl up in a ball with her down there.

I just want to see her sweet little curled up self asleep on one of the couches, snoring. The living room looks desolate and empty without her. Her presence filled our home, now it's empty and lonely.

I want to feel good about ending her pain... I just can't.

Monday, December 8, 2008

Warning



If I'm an almighty bitch for the next week, please forgive me. Tomorrow morning I'm taking my old Sweaterdog, Chancie, to the vet to be put to sleep...

We're not taking it well.

So apologies in advance.

Friday, December 5, 2008

Chelation... My thoughts.

I've been wanting to blog about chelation therapy for a long time, but felt like I needed to research more to understand fully what is entails. I thought perhaps it would not be as horrifying as I had thought, if I understood it more thoroughly. So I spent a couple weeks reading up on it. The pros, and the cons, the how's and why's and who's. I came to this conclusion... It's as unnecessary, unproven, and potentially harmful as I thought. But the research was enlightening. I had not know that there was oral chelation. I assumed it was exclusively IV administered.

In those couple weeks, I never once found a single article showing scientific proof that chelation did anything for an autistic child. I found a lot of doctors and alternative health sites promoting it, mostly using McJenny as a selling point. Did she even use chelation? I'm not sure. She seems to be the sole source of "scientific" proof for most of these types of practitioners. You all know my opinion on McJenny. I'd listen to a McNugget before listening to a word McJenny has to say. Not simply because I disagree with a lot of her agenda, and her wild claims that her way can cure all autistic kids, but because she is drowning out the voices of people who have a clue.. Oh boy, i need to stop and get back on track. this is not a McJenny post.

Ok, so from what I read, chelation is done by giving the child a chelating agent, either orally or in an IV (usually DMSA, from what I saw). This agent enters the bloodstream and binds to heavy metals in the blood. Apparently it also binds to Calcium, which seems like it would be very bad for kids, especially tiny ones like Jaymes, who need as much Calcium as possible. Anyway, the heavy metals and chelating agent are then excreted from the body by way of urination. It can take between 2-4 hours per treatment, and some people will treat their kids DAILY.

All medical issues aside, in what world is it appropriate to force a child to be still for a treatment (even if they can play or whatever at the doctor's office, I would hope to god their don't send kids home to chelate without medical supervision.. though it would not surprise me much...) for 2-4 hours? An autistic kid? Nope. that in itself would be torture for Jaymes.

Then there is the basic premise of this therapy. It all goes off the -unproven- theory that Vaccines cause autism, because they contain mercury (which they do not, anymore). Basically the only "proof" these people have is what their patients have said. Sorry, but that's bull. Desperate mommy gets convinced to try this miracle cure, and afterwards is asked if kid is improving. She is desperate. She wants it to be true, and she sees improvement where there may or may not be any. You cannot rely on a parent to evaluate the effectiveness of a treatment. I know my child, but I do nt have the trainning, or unbiased opinion to be able to say "well, this was beneficial." or "This was a waste of time, there was no benefit to this treatment." We see what we want to see- we want to see that something has helped, and we will see things that are not there. Of course those docs are all for agreeing with the parents, after all, the parents are furthering their cause- and giving them money. Generally chelation is a self pay therapy. No insurance covers uncessary, intrusive, potentially dangerous therapies, not even Medicaid. After working in medical billing for awhile, I've learned that self pay patients are the doctor's FAVORITES, because doc names the fee and they have to pay it. There's no messing around with insurances, taking lower fees, etc...

One very interesting thing that came up on google when I was looking up info was this... The NIMH had proposed a study to see if there was any validity to using chelation to "cure" autism. thank god for sensible people is all I have to say. They canned it, deciding that because “there was no clear evidence for direct benefit to the children who would participate in the chelation trial and that the study presents more than a minimal risk."

Our scientific community needs to concentrate on "real" research. I'm not saying ignore biomed totally. I think vaccines can always be made safer, and that there should be a constant drive to improve more and more. I do not think that the folks advocating (and rabidly attacking parent who are looking for answers) "NO MORE VACCINES!!!" are doing anyone a service. We need our vaccs. We just need them done safely. Spread them out over a longer period of time. Keep the research going to make sure everything in those vaccs is safe, and will not cause harm. I do not deny vaccines can cause harm, but I refuse to believe the unproven theory that they cause autism. Kids have vaccine reactions- look at Sierra's hospital stay a few months ago. That was without a doubt vaccine related. But guess what? She's still not autistic.

Another thing that bears looking into is dietary interventions. I'd love to see some real scientific studies on the GFCF/Feingold/ETC diets. I'd love to see Medicaid and other insurances one day cover those costs for those of us who cannot afford to feed our children purely organic, healthfood store stuff.

How about some more genetic studies? Lets figure out what causes autism, and how to cure it. And no, I don't mean with miracle vitamins, foot baths, and chakra releases.

Medication studies. So few meds are approved to treat kids with autism. What about finding more, safer drugs with less side effects? How about we learn some more about treating kids under 5?

There are SO many better things NIMH could research, thank god they realized this and did not waste time and resources on a worthless cause like chelation. Thank god they realized the risks involved. Good for them.

We need to take a step back and look at the big picture. Stop bitching about the pharmaceuticals. they're really not out to kill all our children and steal the billions we throw at them. If they were, they'd simply pop some arsenic in the vaccs and be done with it. Regardless of what causes autism, why obsess over it? How does it help you to know why? What, get some free cash off the pharma companies when you sue for the "vaccine injury"? That doesn't help your child. We don't need to focus on who to blame, we need to focus on helping our kids live better, fuller lives.


In other news, Jaymes is doing pretty well. he's been having weird manic moments where he flails around so hard he hurts himself, so we have d/c'd Risperdal and started Clonidine. It seems to sedate him for a bit, then wear off. It is a 4th of a tablet though, and the tablet is only .1mg. So, tiny dose. We'll see how it does. I don't want him so sedated he isn't him, but i also want him to stop hurting himself and tearing up everything in sight!

He's been talking up a storm, and loves his Goosie Cards. There will be a blog about how he's using those pretty soon here.. He gets it though, and he loves the cards. He's doing well in therapies, and in school. He went poopy in the potty at school, but here at home we are not having any luck. Sierra spends a lot of her time on the potty, lol.

Getting geared up for the holidays.. Gotta get the Xmas tree and get some decorations up!

blogger FAIL

I know, I suck. I've been so busy with everything from the horse to Jaymes to the house and holiday crap. To top it all off, soon here I've got no choice but to send my piece of garbage Dell laptop back for repair. Meaning NO internet for.. how long? Couple weeks?

-eye twitch-

Anyway, I promise to get a decent blog post out tonight or tomorrow. Please don't abandon us, things are a bit hectic and my muse is sleeping. It'll go back to normal. I've been researching for a blog on the insanity that is chelation therapy... it'll be controversial at least, if not entertaining and informative.

Monday, December 1, 2008

Inb case anyone is interested...

Goosiecards is doing free shipping on orders until 12/31/08. Save yourself $5.99 (I think)! I'm going to order some I think... When I'm not broke.