Morning is here...

And I'm about to go get the kids up for the day. I have to say I'm dreading it. Jaymes has been horrible every day, and I find that I don't even have the desire to deal with it at all. I'm sick of yelling, sick of chasing him, sick of trying to clean up the messes he makes before Jason gets home and sees them. I like night time, when he's asleep. He's so cute, asleep.

Sierra has also been horrible. She's mimicking Jaymes' behavior like a little parrot and it makes everything a hundred times worse. She's got this quality to her voice that makes my teeth hurt when she screams. Interestingly, when Jaymes is sleeping or gone, Sierra is a happy, cute, well behaved child.

Wish us luck for a non horrible day. Jaymes is kicking the snot out of his bedroom door and screaming, so I suspect it's time to get going on our day.

Another Thursday...

I don't need to go into details about today's therapy sessions, beyond saying he apparently did well in OT. Dunno about the others, and frankly, I don't care anymore. I could hear Jaymes screaming like he was being skinned alive the entire time sitting out in the waiting room (Yes, I'm still banished from all his sessions, which makes me crazy, but I'll save that for another day.)

I am at a loss. Jaymes just gets worse and worse. School claims he's an angel, which prompts me to wonder what is going on in that classroom that he is behaving so well. I fail to believe that despite 3 therapists and myself getting hell from this child, that a teacher and assistant have somehow miraculously gotten through to him. I get the feeling Jaymes does a lot of wandering around alone, daycare center style, with the occasional one on one session to break the monotony.

Anyway, I guess the question now is this... Why does Jaymes act like this with me? Why is it always worst in my presence? Why did he come out of a good OT session, see me, and go off?

I'm strict with him at home. He doesn'tget away with anything. We try to be consistant, and we expect him to be a decent human being. We can tell when he's being a brat and when he's just being himself- and can't control it- and we adjust our way of dealing with him accordingly.

So what am I doing wrong? What can I do to help him? Would he be better off away from me?

Jaymes is the light of my life, the one person I don't think I could live without. He is my reason for being, and the best thing I have ever done with my life. If being with me is causing this behavior, making him so angry and miserable, and making him hurt himself... Well, I don't know what to do.

I really feel like getting in the car and leaving all this behind. I don't know what I'm doing, no one gets how bad all this is, and I want a break.

Finally bought an umbrella...

I've found that not having a car available to me is a downer, where rain is concerned. Woke up this morning at 6:15am, and it was raining cats and dogs and goats and gophers too. I've never seen it rain so hard here. I had a feeling that if we had an umbrella, it would be hidden in the hay shed. In the 30 seconds it took to sprint out there in the dark, I ended up soaked through (in my jammies!). There is no light out there, so I was using my cell phone as a flashlight. not overly effective.

Anyway, there was no umbrella. No idea what happened to the umbrella, but it is long gone. Called Jason, but none of the places he suggested panned out either. He suggested I just keep Jaymes home from school, since without an umbrella we could not get down the the bus stop.

And what do I say to that? Hell no. I -like- my Jaymes' free day. I've needed those desperately, and a little rain is damn sure not screwing that up. I love Jaymes, but he needs to be at school where he can learn and I can give Sierra the special attention she so craves.

I took a garbage bag, put Jaymes into it, cut arm holes, and put Jaymes in the stroller. Put a change of clothes and a note to the teacher ("Don't be surprised if Jaymes is a little damp!") in his backpack, and we headed out on our looong walk to the bus stop. Jaymes stayed good and dry, although halfway there I had to give up my snuggly sweatshirt to cover his little head.

Later, I did end up getting an umbrella, but as you'll find out, it didn't do me much good.

Went at 3:15 to get Jaymes, and it was again pouring like crazy. So into the stroller with Sierra, in her raincoat with a blankie over her, plus the umbrella shoved down over her. You could not even see her, it was cute. Sadly, it meant I got no umbrella at all.

You'll be please to hear that I did not melt.

And speaking of melting... Jaymes got home and immediately had a meltdown. It was ugly. He's got some new bruises and scrapes, and did not end up eating any dinner. It was so ugly, in fact, I decided to get it on camera for the appt with Dr. Klinepeter so he can see the "real" situation. no one ever believes me about how bad Jaymes can get, so I've resorted to recording bad moments.

It lasted about 15 mins, complete with plate throwing, screaming, choking, biting attempts, table shoving, head slamming, and body throwing.

Watch them, please. I would LOVE for someone to have to listen to it, and REALLY (really) see what it is like.







And the school thinks he's a perfect angel with NO FUCKING BEHAVIORAL PROBLEMS.

Yeah, I'm still very stressed out.

Living the good life...

This is awful to say, and I really do feel like the worst mother ever for saying it.. But I'm so glad Jaymes is gone from 7am until 3:30pm. I really was at the end of what I could handle with him, I was getting close to losing it entirely.

We had a good day, Sierra and I. She woke up at 9:30 (no Jaymes yelling to wake her!) and we ate breakfast together. Then we watched some Elmo, colored, and went outside to play in the rain and mud. Buddy the horse was getting moist, and he hates to be moist, so we put him in his stall. He has not come out into the paddock since, he doesn't want to get wet apparently.

After that we took a shower, and I spent like an hour playing with her hair. She looks beyond adorable in pigtails. Sadly, she yanks them out almost immediately. I did get pictures though!!!







Sierra has been much happier without Jaymes here. She hasn't had a single tantrum or threw anything. I think she likes pretending to be an only child. I can only imagine her horror when Jaymes gets home in about an hour. My friend Heather is being realllllllly nice and picking him up off the bus for me, as it is pouring rain and I have no umbrella. If it were only me, the rain wouldn't bother me, but I don't want Sierra getting soaked.

Anyway, pretty good day. I'm looking foreward to seeing my lil buddy again though, I miss him. I need Jaymes snuggles.

Peace and quiet

Jaymes went off to school at 7am, he seemed ok with the bus. They did not put in his harness setup though, so he is "loose" in the seat. Either he'll be perfect and stare out the window, or he'll be all over the bus and I'll hear about it tonight. Not my fault, the darn harness is written into the IEP. They need to use it.

"He doesn't need that, the child restraint law does not apply to busses"
"Busses don't get in accidents, he'll be fine"

I don't care what the law says- that only means that the district is exempt from ticketing for not having kids restrained, not that when there is an accident, the law will save my child from being killed because he is not restrained and weighs 32 pounds.

Busses do get in accidents. The majority of the bus drivers in our area havve very little certification and very little education, and it shows when they make remarks like that.

Anyway, I need to go feed the horse and clean up a bit before Sierra wakes up. Least it'll be a peaceful one child kind of day.

First Day of School

Would've been a great thing for Jaymes. All the introductions, the getting to know the room and the teachers and the classmates. Yeah, would have been wonderful. However, thanks to the damned school AGAIN, Jaymes has no bus assigned to him.

When he first started at the old school in Winston, we waited 2 months or more for a bus. They finally got it set up, but the driver almost never showed up on time, wouldn't let me put Jaymes on the bus without his harness (which they didn't rig the bus with!), wouldn't let me get on with Sierra (let's just ditch her on the side of the road while I put on jaymes' harness, I'm SURE the baby knows not to go under the bus or in the road, and won't be bugged by mommy leaving her someplace.

Switched schools, for many reasons. Waited ANOTHER month for a bus. This time, the bus stop was already existing, right by my house, with other kids who were in the same friggin class. Still, a month. The bus would not let him on until he was set up in their transportation system, despire the school principal telling me to just put him on the bus, regardless of what the driver said.

End of last school year? Everyone was supposed to get bus forms. Jaymes didn't, so I asked his teachers, who told me the bus was set, nothing to worry about.

Come Open House day, and they tell me NO BUS. Great, big damn surprise. So I filled out a form and gave it to the office. That was last week. I expected a call on Friday, at the latest. no call. Called them, no answer.

First day of school. A day that I think is important. jaymes has a new teacher, new classmates (most of whom are "normal" preschoolers), and it is the day when everyone gets to know each other and feel comfortable. Jaymes got screwed out of that opportunity, because the school is LAZY.

There is also, of course, the fact that I desperately need peace and quiet, and a day without Jaymes. Should've been today, so me and Sierra could do something special.

I am so upset.

A photo says a thousand words...

But a video says a lot more. I've captured a lot of Jaymes on video. The good, the bad, the ugly. It all serves a purpose. I know that I'm always interested to watch videos of autistic children having meltdowns, because it serves as something I can compare Jaymes to. Not to say the need for comparison is healthy or particularly mature, but I can't help myself. The good stuff serves as a reminder to me, that it isn't ALL bad, life has not gone entirely to the dogs.

Jaymes talking videos- lots of babble, few words, but listen, it's really cool.

Popsicle?



Just a bite of cheese?



Jaymes and Sierra's newfound obsession: Elmo



Jaymes wants another popsicle, mommy says no:




Jaymes and his Alphabet cards, naming objects and letters:






Words and phrases used in these videos:

• Elmo
• I want
• Popsicle
• Cheese (sounds like "kayz")
• Blue house
• Snake
• Train

I think it's pretty neat.

So...

Went to the neurologist yesterday. It was an 8:45 appointment, those cruel bastards. I will say I really, really, really enjoyed the drive to Winston. I got to be totally alone, no kids, no husband. Just me, my horrible voice, and the radio! It was quite relaxing.

Neurologist did all the same stuff they did to Jaymes for his eval awhile back. I ended up kind of sick to my stomach from all the "follow my pen with your eyes" stuff. The conclusion they came to (excuse me while I don my Faux Surprised Face) was that the dizziness is something to do with my inner ear, and the memory loss/insomnia/exhaustion/mood changes are all depression linked. Gotta wonder what they charged me to tell me that, oh for insurance. I've shoved the ER bill under the couch for the time being, as looking at it makes me want to go jump off a bridge.

Anyway. They're going to be referring me for counseling and meds (BLECH), and giving me more Meclizine to control the dizzy spells. I am pleased that they understood that because I have no insurance, they could not do a billion and one diagnostic tests. The doctor was hugely pregnant, which amused me slightly. Sometimes I think, "oh, I'd love one more baby (BOYBOYBOY, girls are trouble.)" and other times it's like.. Please, take my reproductive organs away so I don't have to deal with anymore insanity.

I was bummed out to go home, think I drove like 35 all the way down I40, which pissed off everyone driving near me. Got back home and Jason had decided it was time for us to get our NC drivers lisences, as we have had our FL ones for the entire almost year we've lived here and I do believe that may be illegal.

We both went in, turns out we forgot my Social Security card so I plopped the kids back in the car, went and got it... Jason was halfway done with his test, and I started the process for myself.

The first thing they have you do is sit in a cubicle, give some info, and then take the vision test. Unlike FL, the vision test includes a portion where you must identify various signs without the text on them. Meaning, a round yellow circle, pennant, etc. I missed the Railroad one, they're not friggin yellow back in FL!

Every few seconds I had to pull my face out of the eye test thingy, to check on Jaymes and Sierra, who were busily engaged in tearing the diaper bag apart and tossing the contents to each of the four winds. I did eventually finish, and passed despite missing the stupid yellow circle sign.

Next stop was supposed to be the computer to do the written test, but Jason started frantically whispering from ACROSS THE ROOM, and I had to clean up the mess of the diaper bag, and drag the whimpering jaymes over to him. He continued to whisper, oblivious to the fact that i could NOT hear him, and it was really irritating me. Finally, I get it out of him that we are $6 short of the $64 we need to pay for our licences. I blew up at him, grabbed the kids, and went to the car. Apparently, Jason forgot how to use the ATM that was 5 mins away, so i had to get out another $20 and drive back. Thankfully they let me continue my test, although I was seeing red and it's a miracle I didn't fail.

The test was super easy. I have never so much as opened the NC Drivers Handbook, and I got them all right. It's really more logic than anything else. Logic and distances. Jason studied for 2 hours last night, and got 3 wrong. Truly a blow to his ego, because remember, Jason has the 4 year degree in psych and I am a lowly high school graduate. HA.

I got to choose a background for my license, which I tohught was quite cool. In FL you get what you get. I chose the lighthouse. Jason didn't understand the choice and got the outline of the state map thing. Mine's prettier.

After that, we went to Burger King, ate lunch, and drove to Greensboro. Jason's new job required a TB test, so while he did that with Jaymes, I took Sierra to the Children's Museum. He and Jaymes joined us later, and Jaymes actually did pretty well. He would not budge from the train tables, but if I sat with him there and no other kids tried to touch the trains, all was well. He's so cute, when you hand him a Thomas train car, his face lights up like I've just told him he's won the lottery.

There was a frantic struggling screaming fit upon our departure, but that was to be expected. The staff there is used to Jaymes' screams on the way out, so only a few people gave me funny looks.

Later that day Jason and i had the mother of all fights, which ended with Jaymes and I literally galloping off on the horse. Seriously how many of you can claim to have ended a fight by storming off on horseback? Yeah, my new claim to fame. We had a really nice ride, up the road and back and forth until Buddy was tired and needed to go in. At that point Jason and I did the obligatory fake apologies to keep the peace, went to Target, and drank Starbucks. I couldn't help but wish my Starbucks had some sort of alcoholic beverage added. I don't drink, by the way, but sometimes I'm tempted!

Again I couldn't sleep, so I'm very foggy headed this morning, and have a headache. I took 4 sleeping pills last night too. Watched the entire new season of House, and loved it. The finale was awesome.

Wish I could sleep. It's been a week or so and I'm feeling it. I feel like I'm hopped up on caffiene, twitchy, sick, sore, and bitchy as anything. Neurologist wouldn't prescribe me anything, suggested Tylenol PM. HMM, if OTC sleep aids don't work, why the hell would Tylenol PM?

Anyway, my apologies to you readers for my negativity, I'll try and bring back the positivie, amusing, fun to read stuff soon. I'm just not at the point right now. I have so much stuff to deal with right now, so much to get together. I've pretty muc ignored the bills for the last month, so there's a bile old pile of stuff. TV is getting turned off this week, garbage won't be picked up next week, and the water bill is up to $200 with the new deposit, thanks to it not being paid last month. I know I need to be better organized, I've always done the bills and done them relatively well, but lately I just have no desire or enegy to do anything. I just want to sit on the internet and talk to my friends over at FHoTD's forum. The Squishypuff persona is a lot better than the real Amber at the moment.

I feel for Jaymes and Sierra. Jaymes is probably as bad as he is because of us, because we're always fighting and yelling at each other, and because all I want is to get away from them all. I'm sick of being the strong mother, who gets things done and advocates for Jaymes. When do I get a break? Nobody cares about me, because it's my job to do this for Jaymes. And honestly, I don't mind it, I can immerse myself in this whole Autism world, and forget everything else.

I don't know what to think about Jaymes. He's horrible in public, he's pretty good at home if you let him do what he wants and leave him alone. He told me "I want cheese" last night. Maybe I'm overdramatizing how bad he is lately? Maybe he's the same as he's always been, but in my misery, I'm seeing it worse than usual?

Ican't think straight anymore. I don't know what to say to anyone, and i wish I could just go someplace and be alone for awhile.

I have to go at 11 to do this Pet Partners (therapy dog program) training thing, which i don't want to do. I don't want to deal with people when I feel like this, or to feign self confidence and make myself speak up and play teacher.


On a kind of cool note, check out these stats from my page counter, it;s number of hits by country:

Country	Count
United States	2233 (67.85%)
Unknown	463 (14.07%)
Canada	261 (7.93%)
Australia	138 (4.19%)
United Kingdom	92 (2.80%)
Liechtenstein	32 (0.97%)
Iceland	25 (0.76%)
Belize	13 (0.40%)
New Zealand	10 (0.30%)
Germany	6 (0.18%)
France	4 (0.12%)
India	4 (0.12%)
Philippines	4 (0.12%)
Norway	3 (0.09%)
Sweden	3 (0.09%)

Another sucky Thursday

Well, on the plus side, Jaymes proved to everyone that he doesn't NEED a reason to have a tantrum. I guess getting out of the car really upset him or something, he pitched a huge fit and screamed and cried all the way up to the therapy place. I'm kind of relieved he only had the two sessions today, rather than three, as I don't think he would have handled three.

I'll spare you the gory details, just go back and read last Thusday's blog entry. And the Thursday before that. It's always the same. I'm getting kind of sick of all of this, to be honest. Kinda upset too, because I ended up stuck in the waiting room during Jaymes PT.

I get it, I'm probably annoying as hell to therapists. I talk too much. I don't get any human interaction, aside from Jaymes and Sierra (because as previously stated, Jason barely speaks to me and I don't get out much) so I tend to babble. And I understand, he probably does do better without me in there.

But this is my thinking on the issue... If my presence makes Jaymes act so much worse (and, admittedly, it does) how is working with him away from me going to help, when every other minute of the day he spends WITH me? If he can't function with me around, he needs to learn to. Unless something unforeseen happens, he's got to deal with me being around.

Forgive my lack of coherent thought, I'm really tired and stressed out and irritable.

Tantrum captured

For the sake of proving Jaymes' fits to the doctor, I video'd him with my digital camera today. Camera has no sound, so I did the sound on my cell phone. I have yet to upload the digital camera ones, and they don't have sound so it's not that thrilling to watch. Mostly flailing toddler. Silent, flailing toddler.

Cell phone clips:








This actually lasted about 2 hours, and he is still screaming, in his bedroom.

Jaymes' idea of fun

Lining up cans. Yay. He did this for a very long time, then went nuts when I took the cans away.

Anyway, good representation of an Autistic child, isn't it? Oh, and watch at the end, Sierra gets crazy with the BBQ sauce.

Morning again!

I'm being horribly lazy this morning, and am sitting on my couch surrounded by the blankets I have yet to put back in the bedroom. I should be outside, feeding Buddy and cleaning up the poop in his paddock, and moving him to the pasture. I should also be watering the plants, feeding the dogs, and coming inside to clean the house and feed the kids. But, since no one is here to make me do any of this, it'll wait another few minutes. Kids are still sleeping, thank god. Sierra woke up at 1:30 screaming her head off, I think she had a tummy ache. She let out the most foul, horrific belch right into my face. Ugh. Anyway, she should be tired after all that. I know I am. I woke up from a dream that I was in Spain, in a castle, looking for a place to pee. Admittedly, when I awoke, i had to pee really bad. Funny how those things make it into your dreams.

Tonight is Open House at Jaymes' school, where I get to meet his new teacher and decide what I think. I don't know how to handle it, honestly. What if she's a complete moron? What if she makes it clear she has no intention of doing anything special to help Jaymes succeed?Ok, ok, not fair to badmouth her yet, she might be really great.

I'm sad that none of Jaymes' friends are in his class this year. He had A. and L. in his class last year, they're twins who live one street over with their 3 siblings. I cannot imagine raising 5 kids without going nutty, but their mom does it! Anyway, Jaymes loves those kids, and it's sad that he'll be without them. Everybody went off to Kindergarten, and Jaymes is stuck in Pre-K.

Question, for those of you who have or know autistic children:

How do I tell how severe Jaymes is? Sometimes I look at him and wonder if i somehow imagined this whole Autism thing, if I took a few bad behaviors and made it into something it is not. Maybe he is entirely normal, and I just blew regular toddler tantrums out of proportion.

The reason this comes to my mind is this. Sometimes, Jaymes is sweet and loving and "normal" ish. He says "hiiiiiiiii!" when he sees kids to play with. That's not Autistic, is it? He cuddles up on my lap to watch TV (although he does get up and down a zillion times), and to love on me. That's not Autistic. He's perfect in school, supposedly. That's not Autistic.

He has his days, and his moments. True, if you say "no" or irritate him at any time, he slams his head into something and screams at you. But maybe that's because we yell too much? It seems that yelling at the top of our lungs is the only way he even hears us. Any lower and it's like we didn't even speak.

Doctors and therapists do not tell you what they think, when asked. I guess they can't, but I wish they would. It pisses me off, not being able to get a straight answer from the people who matter.

I guess this is me acting like the parents I've been known to poke fun at- the ones who can't come to terms with their child's problems and insist he is normal. I kow Jaymes isn't normal, but I can't help but cling to the thought that maybe my mind has turned this all into something it is not.

Enough with the deep thinking. I prefer to drown my sorrows in extremely childish, goofy posting on FHOTD.

Ouch

Horrible horrible headache today... Been a bad mommy and let Jason do all the parenting. I'm at the point of not wanting to look at Jaymes. No worries, though, it'll only last a day or so.

Got his chewy thing in the mail today. As predicted, he loves it.

What to do...

I've known for awhile now that our marriage is a disaster. It's fairly obvious. We sleep on separate couches, our happiest times are when we're not in the same building, and I could go without seeing him for a few weeks before I'd stop to think if I missed him. I'm tired of it...

He's never happy about anything. When he worked overnights at Walmart, he whined constantly. Ok, fair enough, overnights suck. He said he'd be happy once he got to daytime. Got to daytime, he still whines constantly. He applies for a "real" professional job. Says if he gets it, everything will change and he'll be friendly and happy again. Well, he got it, and he's even worse.

My mom helps us get a brand fucking new car, and he's been moping and being a prick for the last 4 days. Nothing nice said about the car, he pretty much listed every negative he could think of about it to his mother on the phone last night. He takes all the fun out of everything. I've been SO excited about the new car, but he has to ruin it with his whining and complaining and sullen attitude.

He is OCD about the house being clean, so I clean it allll the time. It's never a mess, even my mom said that and for her to say so.. Well, it's clean enough. It's not perfect, my rats make a smell and I wish he'd let me move their cage into the bedroom, where the smell could be kept under better control. I mean, it's not bad, but you can tell we have animals. I don't see why he cares about the rat cage. When I changed from the nasty old shower curtain to the new one, he about had a fit over it. It took me months to get him to let me change it.

No matter how hard I try, how much I clean, how much I try to make things nice for him, it doesn't matter. Why am I even trying? Nothing is good enough, nothing ever makes him happy.

He thinks the animals don't need anything- that they can go without food, water, that vet care is optional.... And my pushing for those things (of course my animals eat and drink!) makes me a horrible person. Chance is getting pretty old, and skinny (not for lack of food, she's just deteriorating the way old dogs do) but he won't consider the vet or even discussing whether her time is coming or what. His cat hasn't been vaccinated in 2 years.

I can't leave the house alone. I can't have any hobbies. Even going for a walk down the road without him is some kind of personal insult to him, and I'm expected back as soon as possible. Time spent out cleaning Buddy's stall or pasture or feeding and grooming him is considered "special fun Amber time" and not work. Since hauling 80 pounds of horse poop is such a quality recreational pursuit.

I have to drive him to blockbuster at least once a day, because he's got that stupid "rent all you want for a month" thing, and wants his money's worth. He'll go 4 times a day. I do it, I watch the damned movies, not because I like to (I hate watching TV and movies) but because it makes him happy. But never a thank you, or a chance to do something I want to do.

Thursdays are miserable days for me. Therapy day, we leave at 12 and get home at 5. It's exhausting, depressing, and stressful. But according to Jason, I get to go out and "have fun" for 5 hours. Yay.

I wish he'd just disappear. I can't leave. I wouldn't be able to get Jaymes the care he needs. I could work 2 jobs, and be able to pay rent/car/etc but I wouldn't have any spare TIME for doctors and therapy, for working at home with Jaymes, or to even BE there for Jaymes. I would be working the majority of the time, and he would just get even worse. Sometimes, though I know it's so wrong, I think it'd be easier if something happened to him. Then I could mourn his memory, not have the last dying moments of the relationship be filled with anger and yelling. Just have good memories to think about. That and widows benefits from SSA.

He'll come home soon enough, say he's sorry (he won't mean it), I'll say I'm sorry (I won't mean it), and we'll go about our day like all is well. Then it'll be an hour, a day, maybe a week before the next big fight. Every day I like him less and hate him more. I hate how he treats Jaymes, I hate how he treats me. I hate that he does good things, like cleaning and laundry and cooking, because that somehow makes me look like the bad person.

I hate how his mother thinks he's god's gift to men because he doesn't get home from work and sit down in a chair with a beer, like her late husband did. Apparently she thinks that because Jason changes diapers and cooks and helps with things, that I am a sub-par wife and have no right to any kind of complaints. i don't deny he helps out. I'm a godawful cook, and even when I do cook, he won't eat it. I do clean, but he never thinks it's good enough so he cleans again.

What to do, what to do. It's not enough to be on the verge of insanity thanks to Jaymes. Now he has to pile more crap on me. Jason freaked out on Jaymes today and yelled at him for having a messy room. Apparently Jaymes needs to be expected to clean his room twice daily and keep it clean. Guess who has to enforce that one? ME. I don't have the energy for more fights with Jaymes. My priority with him now is keeping him safe, us safe, and tryign to get him functional in public. I pick my battles, and making him cater to Jason's obsessive cleaning isn't a battle worth the fight. He thinks that because he has his BA in Psychology and behavioral whatever, that he is the ultimate authority on everything. He knows better than I, the therapists, or the docs. He doesn't have any interest in Jaymes therapy. Never been to a session, never seen a treatment plan, never attended an IEP meeting for school, but he knows better. He's the one who told me I didn't need to be taking my Paxil, because depression is a "mind over matter thing and you just need to get over it and be positive and you don't need medications."

Makes you just want to take a big ole dose of something and just drift off.

New car, good toddler

We went and got our new car today! 2008 Kia Rio, my mom actually helped us a LOT and we (ok, I, Jason misses his old piece of crap) looooooove it. It's shiny, and new, and only had 2 miles on it!!! Now it has 22 -sad face-

Jaymes loves the car. He was so good today, we were at the dealership for 4 hours and he didn't have any major fits. Jason had to take him out to the car for like 30 mins at one point, but otherwise jaymes was nothing less than angelic. He's a cool kid.

Thought Provoking Article

A friend emailed me a link to this article. basically it's questioning how tolerant the public should be in regards to our Autistic children and their less than desireable antics. I'm stuck in a weird place, having read it, somewhere between taking offense and agreeing. I know Jaymes bugs others in public... But then, the old people at Walmart bother me, and god forbid I ever voiced my frustration with them... I dunno, what do you guys think? Read it and leave me your thoughts.

Oral Hell

Apparently yesterday's oral fixation was just the beginning. It started out with Jaymes making all kinds of odd mouth, lip, and tongue movements during Speech, then progressed into him chewing on everything in PT... Then that evening, he started to gag himself with his hands to make himself vomit. He also started chewing his hand and fingers obsessively and rubbing his face.

Today, everything got 100 times worse. We decided to go to the Children's Museum, where Jaymes can run wild without needing to be held back from things usually. He took off like a shot, running to the train area. Trains are the new obsession. and I do mean obsession.

He took every train car from all the train tables, and from all the other kids. He made a super long train with them, and attacked every kid who came near. I dragged him away after he got aggressive with another child, and he went hysterical. Screaming and kicking. So I hauled him out front of the museum, and sat him on the sidewalk and myself on a metal bench. The tantrum got louder and louder, and more and more violent. He threw himself down the concrete stairs, slammed his face hard against the sidewalk, kicked and flailed and beat his arms and legs against the ground until he was crying from pain (as well as the initial tantrum). I picked him up, and sat him next to me on the bench, and he started to pound his face against the metal of the back rail on the bench. So we went to the car, and I sat him on my lap in the passenger seat, held his arms and legs down under mine, and tried to ride it out. An hour later, still screaming. So loud that everyone in the vicinity was staring at me, probably thinking I was killing Jaymes. We were both covered in sweat, from fighting each other, and I really was barely holdiong onto him. He's quite strong, for a little guy. He would have been a little calmer after awhile if I had not held him, but I think he would have very seriously hurt himself. He tried to take the glass from our passanger side mirror and scratch himself with it.

Then, suddenly, I felt teeth clamp onto my arm. he has NEVER bitten me like that. Not out of anger, with intent to hurt. Admittedly, it was probably because I was holding him... but still. A first, and not a good one. My arm is purple and red and blue, and there is a hard knot under the bite. He also hit me in the face with his head, second bloody nose in 2 days courtesy of Jaymes. My face and my arm hurt, and I'm getting pretty damn sick of this.

Jason and I switched out, determined that Sierra would at least get to have her fun at the museum. She loved it, she ran around and giggled, sat in the mail truck, played Doctor Sierra, and built with huge lego blocks.

And then Jason called me. Apparently, when it was his turn to deal with Jaymes, he just buckled him in the car seat and read a book, paying no attention to Jaymes. I won't even get started on the idiocy there... But anyway, Jason looked back at one point, when jaymes had gotten quiet, and saw that his face was gushing blood. Apparently he had smacked his face against the side of the car door, or else hit himself to the point of causing a raging bloody nose. Jaymes was covered in blood, the car was covered in blood, Jason was covered in blood.

He never did calm down enough to go back in. We left, Jaymes still sobbing. He was covered in blood from his nose, his face is all scratched up (his doing), his arms and legs are scraped and bruised from throwing himself down, and he has a big ole bump on his head from where he hit it on the bench. He spent the car ride home trying to make himself throw up, and biting his hands.

I am at a loss. No one seems to understand how serious this is getting, nor offering any useful solutions. Is it going to take Jaymes sending himself or me to the hospital before everyone sees that I'm not exaggerating, that we need to do SOMETHING, anything, immediately?

I don't know what I want done. I don't know if there is anything TO be done. I just want Jaymes not to beat the living hell out of himself and me.

Mouthy?!

So, Jaymes has picked up another weird phase... It would seem that he's very much into biting/chewing/slurping on things. He chews everything in sight, including his hands. His PT let him try out a Chewy Tube, which he loved and gnawed like crazy. It's like a Kong for dogs, but shaped like a T. Unfortunately, he couldn't keep it, so I've ordered one for him. In the meantime, he is amusing himself by chewing things... and.... Get this: gagging himself until he vomits. Yes, really vomits. It's horrible.

A few words from Jaymes

jAyymes
erbb

popsicle
popsicle
popsicle

grandmva



Yes, all written by Jaymes. I had to tell him how to spell, but he knew most of the letters and typed by himself. He got a popsicle for typing it. Then he typed a bit more and got angry. But yay, 10 mins of sitting on my lap and typing, and enjoying it. He spoke all the letters aloud as well.

Crack out them twinkies, folks

Because I have lost 10 pounds! Go me!

Yes, I was 155 before, and now I am 145. And the scale is working properly. I'm so pleased. Now another 40 pounds to go.

Random thoughts

It's been an eventful couple of weeks. Between Jaymes' rapidly deterioration and our mounting financial issues, I've been kind of crazy. Then add in the big fight Jason and I had today over the horse, and it's just that much worse. Basically, he told me Buddy has to go. We're killing ourselves trying to keep up the massive, costly feeding program he needs to get back to a healthy weight. We're doing it, and he's never been without, but it's not easy. Then, when I posted around trying to set up a new home for Buddy, Jason told me to take it down, that he couldn't do that to me and Jaymes. Conflicting, much?

I guess what we decided is that until we find out whether Jason got the job he applied for last week, we'll keep on doing as we have been. If he gets the job, he'll be making like $25K a year. Twice what he makes now. We'll be able to feed Bud's without starving ourselves. If not.. Well, I don't want to think about it.

In other news, Buddy gave us a colic scare today. He was down in the pasture when we were leaving to go to Target, and I decided to go mess with him, because lying down horses are so cuttteeee. On a normal day, he'd have jumped up the minute I came near him. This time, he stayed down, head resting on the grass and moaning. He stayed down for about 30 mins, alternating between lying upright with his head up, and being flat out on his side, and rolling. Got him up and walked him a bit, and spent the rest of the night doing the colic thing. I checked him about an hour ago, and he is wandering the pasture, grazing. No more lying down, no moaning, no sweating. I'm hoping I won't find a dead horse in the morning, and that he's recovered.

I've been thinking a lot... I read all these stories about parents of Autistic kids, who go into IEP meetings and demand things- be those things communicative devices, classroom aides, more therapy time per week- and GET THEM. How they go in there and argue it until the school people can't say no.

What I want to know is this... HOW?! Everytime I so much as mention anything i'd like to see done for Jaymes, they stare at me like I've suggested that I'd like to get intimate with the teachers pet armadillo. I'm dreading the next IEP, because I want a classroom aide for Jaymes. He needs someone to be one on one with him, keep him on task and actually working. I'm sick of coming to the classroom to see him playing all alone in a corner, while the other kids play and learn together.

I called last week and asked whether he had an IEP prior to school starting. They said no, and they couldn't even schedule one until after school had started. Ok, then. I explained that I wanted to try and get Jaymes set up with an aide, and immediately you could tell the alarm bells went off. "oh, well we can't do that. That might be at the school principal's discretion. We would have to have him evaluated in the classroom by our behavioral team. We need to test him some more." On and on with excuses.

It's not FAIR or right to test Jaymes like that and think that the 30 mins they watch him in a classroom define him. Of COURSE he won't be difficult/violent/screaming/self injurious when they test him. He'll be in a brand new classroom, being allowed to do whatever the heck he wants to do. There are too many kids for anyone to do one on one time with him for more than a few minutes a day- if that. They'll watch him do his own thing, or follow the other kids for the potty time trip, and say he's fine and does not need anything. How do I even argue with it? What can I say to get the point across? Why do I need to feel guilty, like I'm being unreasonable for asking for the bare minimum to help my child get an education. Why is the school district so much more concerned with giving as little as possible, rather than doing right by these kids?

I'm trying to find an advocate to come to his IEP with me. I cannot advocate for jaymes adequately, I admit that. I need someone to push, to get Jaymes what he needs, who won't take any crap, and who won't be intimidated.

I hope that I can find an advocate. I hope that they too will not laugh at me and say I'm being unrealistic.

Sadness...

Buddy the horse has to find a new home... Jason finally got me to admit that with all his special needs, we simply cannot afford to keep Buddy any longer. I'm trying to find him a good place, or possibly trade him for something else, assuming the place is a good one. He won't ever go without food or basic care again, like he did with the last owners.

So anyway, I'm in a nasty mood.

What happened to my little guy?!

Another Very Very Bad Day. It seems that Jaymes gets a little bit worse each day, and no one will acknowledge it except me. That is very frustrating, because I know it's not all in my head. Jaymes barely talks in real words anymore. It's always "I'm sorry" over and over, but without any actual meaning behind it. And "OWWWW!"

I feel like he's regressing faster than anyone could have imagined, and that no one is taking it seriously. Even the docs at Duke aren't understanding. It can't wait until October. We need something NOW.

Every day it's screaming, whining, trashing the house. All day long, unless something new and unique is happening (an unusual person at the house, a trip to grandma's, a new occupational therapist) he screams and fights and acts like the child from hell.

We went to the library this morning, where Jaymes was good for a few minutes. Then he went to the kid's play corner there. There were 2 little girls, 7 months and the other a 2 year old, playing there. Jaymes went to the puzzle shelf, behind the kids, and took his favorite foam puzzle. This was fine, but then he had to run back to the shelf and knock all the puzzles down, throw the pieces, and nearly hit the 7 month old in the head with the back of the puzzle. Both mothers shot me the death glare, and I tried, quietly, to get Jaymes to follow me. Of course he wouldn't. I grabbed his arm, and he threw himself on the floor, screaming. Jason carried him out of the building, yelling bloody murder.

Then we had therapy. He was ok for the occupational therapist, then in the waiting room had a fit and starting head banging on the floor. Went in with the speech therapist, I could hear him screaming loudly from the waiting room (I don't go in with him for that one). I think the speech therapist gets it. She said she'd make a call to one of the autism specialists around here. I hope she actually does.

During the wait between speech and PT, Jaymes went crazy. Screaming as loud as he could, slamming his head into the wall and floor, flailing and thrashing all over on the floor. When Ipicked him up, he hit and kicked and threw himself back down. He did more of the same during the PT session, and I get the feeling that therapist wasn't too thrilled with him either.

What I wish would happen... If somebody (preferably someone useful like a doctor or therapist) would just see that Jaymes is becoming more and more uncontrollable, angrier, unhappier, violent, and REGRESSING. He's not talking anymore. He's babbling like a BABY. He screams out "I'm sorry" randomly, with no apparently meaning. He cries out "owww!" all the time, like I'm hurting him.

Everything we're doing now? IT'S NOT WORKING. Why won't anyone pull their heads out of their asses long enough to see that? Why does no one understand that we need something NOW? Not six months from now, not a month from now. N-O-W.

Jason can't stand him. Jaymes cries all day long. Sierra cries when he cries. I can't take a shower, or go into a room and close the door unless Jaymes is in with me. I go out to clean the pasture, and Jaymes is hysterical and almost blue faced by the time I get back. Jason has to lock him in the house to keep him from running out to me. I can't have a moment of peace and quiet.

And you know, we did get approved for respite. But it's not going to do him any good. Nor will having my mom watch him. Everyone else teaches him things that make life harder for us, or let him get away with stuff, or baby and spoil him and then it's just another thing I have to deal with.

I feel like I'm losing my mind. I can't sleep, I can't eat, and my memory is worse than ever. I can't remember if I've just watered the plants 5 minutes ago, or if I went to the bathroom to wash my hands. I can turn the hose on, and 2 seconds later, I don't remember if I did it or not.I've always joked that Jaymes would put me over the edge, but at this point, it may be more than a joke.

You're not supposed to dislike your kid. You're just not.

Fence Update #1- OUCH

Started on the split rail fence today. My mom dug 2 holes, I dug two holes. With a shovel.In the rock hard red clay. OW. My arms hurt. My back hurts. My fingers hurt. And, the one hole I dug is too stinking close and now I have to pull out the post and dug a new one. I have about a billion more holes to dig. My fence is leaning like the leaning tower of Piza, thanks to the bad post. But, I'm proud of what I did get done.

Jaymes is busily poking the letters on my shirt and reciting them to me. He's so smart. He doesn't know "l" though.

Overwhelmed... More so than usual

I guess I'm just exhausted from Thursday's Very Very Very Bad Day, or something... Do you ever get to where you just want to lay in bed and be pitiful? I'm tired, and I can't seem to get anything done. I need to clean, I need to tidy up the rat cages for the folks coming tomorrow to get babies from me, I need to figure out how to pay the bills before garbage stops being picked up and my cell phone gets turned off, I need to clean the yard, I want to get the fence up, I need to buy hay, I need to get the dogs their rabies vaccinations...

I didn't get anything done today. Not a thing. Ok, I lie. I cleaned the poop out of the pasture and rode Buddy. He was fun, we only did a five minute ride. It was very relaxing. But I didn't clean the house, nor did I do laundry, or give the kids baths. I did feed them, to my credit. No really, you guys know me well enough to know I could be bleeding to death and armless, and the kids would still be cared for.

Anyway. I'm going nuts. I hate not getting anything done. I can't remember anything, half the time I forget what I'm saying as I'm saying it. I just wish I could get a break. I know, I live in a perpetual state of vacation. I stay home, Jason doesn't say anything if he gets home and things aren't done, he just does them. I should be very happy about this. There is just SO much pressure. Let's see... things that are causing me stress:

• Garbage bill is late
• TV bill is late
• Dogs need vaccinations
• Buddy needs vaccinations
• Need to get more hay
• Jaymes is making me insane
• Sierra wants to be outside all the time, but then she wants to be inside all the time
• The house is a mess
• The car needs a headlight fixed
• The car's "Check Engine" light is on
• The car needs an oil change
• Jason's pitching an unholy fit over his TV getting a dead pixel
• My mom's been paying my electric bill for the last 6 months, and I can't stand that
• I couldn't pay the bill even if she weren't
• We can't even open an account with Duke Electric without putting up a $250 deposit
• My mom's got to pay the bill because if she left it to us, it wouldn't get paid in time and it would go against her credit
• My eye is still feeling awful
• Echo's hair is making me really miserable and stuffy and itchy at night
• Jason is still having a fit about his dead pixel
• The neighbors are bound to call the cops or animal control on me again, so everytime a car drives by outside or someone knocks, my heart starts pounding and I feel sick

Oh geeze, I could go on and on. Long story short... All I want to do is sleep. I'm not hungry, not motivated to do a damn thing, and I hate my husband.

Demon Child

You'd think my son had sprouted horns and his pupils turned red... Ok, maybe not. But he acted like it yesterday.

In my household, we have two kinds of days, with a few variations. First kind is the Good Day (or the Very Good Day) in which Jaymes has few to no tantrums, and Sierra is either happy for slightly whiny. A Very Good Day would be a day where both children were perfect angels, in happy moods, with no fussing. We don't have a lot of those, but they're nice when we do.

The other kind of day... -Cue scary halloween music- ... Would be the Bad Day. Or, one of it's variations: The Very Bad Day, or The Horrible Day. These need no explanation, I think the names say it all.

Yesterday marked a whole new level for my Day system. Yesterday was Devil Incarnate Day. Jaymes did everything but spin his head 360 degrees and vomit pea soup. Not a fun day. Obviously, being Thursday, it was therapy day. Therapy day is always a little hard, because he has a long day (We leave at 12pm and get home at 5pm) and because his three sessions are spread out with time gaps between. Even on a good day, waiting is hard for Jaymes. I can't blame him, I guess. If I were little and energetic, I'd hate waiting too. I'm content to sit and enjoy the feeling of not moving for awhile.

Jaymes had his first session with the new Occupational Therapist first. It takes some time to get Jaymes respect (and his attention), so of course Jaymes was Jaymes, and ignored a lot of the time. That's ok, it was his first time. Then, somehow, he managed to pee out his diaper, through his pants, and onto the mat where he was working with the therapist. You'd think his little dangly parts had a life of their own, how on earth did he manage to maneuver himself out of the diaper (no hands!) to pee all over the place? It's not the diaper brand, I've been buying the same ones since he was a baby and we hardly ever have leaks... They've been increasingly occuring lately, and he always seems very pleased with himself. Anyway, the therapist looked a little horrified, and asked me if he might have just peed. I looked down, having been entirely oblivious (as usual), and saw a realllllly big puddle. Lovely. Glad I thought to bring an extra pair of pants for the rotten lil devil. Those things don't really bug me, a puddle is a puddle, not that big a deal. More amusing than anything else, because it was so totally an omen.

Apparently, while we were in the OT session, it started to storm pretty badly outside. Of course none of that rain came anywhere near Kernersville, no that would mean my pasture would get watered and it NOT be on my water bill. Yeaaaah. So, with rain comes... Umbrellas. -Cue that scary music again-

Umbrellas are something I despise. I wish they would be banned or something. Not because I like getting wet in the rain, or because I cannot appreciate the pretty patterns on them, but because Jaymes is obsessed to the point of Freak Out Mode with them. We have outlawed umbrellas at our house. Anyone who knows us hides their umbrellas when we come over. No friggin umbrellas.

And of course, in came all the other patients, each with their own umbrella. Jaymes took off, sat down next to a blonde lady who came in with an umbrella as tall as she was, with a red paisley print. I let him sit there until he went for the umbrella, at which time I had to go grab him. He went crazy trying to get away from me to that umbrella, so I hauled him back to our seat across the room and held him (or Forcibly Snuggled, as I like to say) on my lap. He went ballistic, screaming, kicking, hitting, turning bright red... He yelled out how sorry he was, while kicking me in the shins with his hard little sneakers, and sending ribbons of toddler drool down one of my arms. Then he reverted to the time tested "OWWWW!!!" so people would think I was skinning him alive with an apple peeler. At this point, there were only a few people in the waiting room, so it wasn't sooo bad. Then in came another family, with 4 kids. Each one had an umbrella. The little girl was Jaymes' age, sweetest little girl. But she kept offering Jaymes her umbrella. he can't have them because he either breaks them, or stabs himself or others with them. I told this to the mother, who said "No, it's ok."

NO, IT'S NOT OK. IF IT WERE OK, I WOULDN'T BE WRESTLING WITH MY 4 YEAR OLD.

As usual, the tantrum reached epic proportions... Then exceeded them. I'll stop right here to say that I have the distinction of being the parent of a child, who, while in a room FULL of special needs children (some with behavioral issues) can horrify all the parents and therapists. I thoroughly expected the boy's head to begin rotating, but it didn't. I guess that's a plus. At this point, I had his torso and arms wrapped in my arms, his legs trapped underneath mine, and his head smacking me in the chest. Normally he'd calm down after awhile, but he just wasn't wanting to. Poor guy was so far gone he probably couldn't have stopped even if he wanted to. It didn't help that the parents kept offering him umbrellas and telling me it's ok.

NO, IT'S NOT OK. IF IT WERE OK, I WOULDN'T BE WRESTLING WITH MY 4 YEAR OLD.

Come on now, parents of special needs kids are supposed to be the few I can count on to:

1. Not judge my child
2. Not tell him something is ok when it clearly is not ok
3. Not glare at me for trying to control a tantrum
   

I'm NOT being mean when I hold him there, and we try to ride out the tantrum. I'm protecting YOU from getting your umbrella taken and broken. I'm protecting jaymes from himself (he got in some good hard head bangs on the floor before I had him tight). I'm protecting anyone he may come flailing into. Just because he's crying does not mean I should let him go or let him play with your umbrella. Jaymes doesn't get to just go take things from people and do whatever he likes. If he for a second thought that was ok, our lives would be hell.

People need to understand that we all know our kids, and we know how to control a behavior or stop a fit. Ok, I didn't manage to stop anything, but I did what I could. Either way, I don't need the dirty looks. To her credit, the lady with the bunch of kids with umbrellas was really sweet, it was the other parents who were making me crazy. She did finally get Jaymes to sit on the floor and play with markers, and finally stop screaming. He didn't color, but he connected all the markers by their snap in tips to make a long train.

Did our other session, then PT with April (who, as I've said, is a kickass PT). He was horrible for her too, lots of whining and yelling and a little flailing. But April is realistic, and she also doesn't put up with that garbage, so he worked through it. He rode the tricycle down to see the fishies, and did the stairs, and the ball pit and some other stuff... Did some swinging, but he wasn't having it. He was still screeching when we left, but not nearly so loudly. He did get two stickers, neither of which were earned.. but as always he was immensely proud of the stickers. He loves those.

Oh, new obsessive behavior... We now carry around a diaper (he stole it from the Therapy place's bathroom) that has baby Elmo on it, and snuggle it and talk to Elmo. Enough snuggling and a diaper looks used, even when it has not been. Yay Jaymes. I'm so not buying expensive Elmo diapers for him to snuggle.

All in all a horrible, horrible day. Lucky for Jaymes, he's too darn cute to strangle. It's really aggravating though, I do my best to handle Jaymes' problems, and I get glared at like I'm a bad parent. I'd like to think that someone would back me up. Those other parents go through the same things, so why do I get judged? Would it be better to let him go and attack everyone's stuff? Imagine that aty age 15. Not pretty. Jaymes has to know he can't get away with things. Everyone needs to shut the hell up, and trust that we know how to handle him. Even his grandmothers (both of them) nlet him get away with murder and make me feel bad for disciplining him... I just wish for once, people would stop with the "you're so meaaaan" BS. I'm not mean, I'm keeping Jaymes under control, and I'm teaching him that his behavior is not acceptable. You'll appreciate it one day, when you meet up with us in a waiting room and Jaymes isn't a teenager attacking people.

Oh, and if that were not enough, my husband added his own level of ick to the day. We're out with the kids, Jaymes and I are busy doing something, while Jason watches Sierra. He gives her a handful of grass, and sends her to go feed the horsie. She loves to do this, but as I've told Jason time and time again, she is not to feed the horsie unless someone is holding the horsie's head. Instead, he just gave her grass and told her to go, while he stayed sitting 20 feet away. Of course she did, and when I happened to glance over, what did I see?

Sierra, on her back, with a front hoof on her tummy. That hoof, of course, belongs to an 800 pound animal. The tummy belongs to a 25 pound little girl, and is soft and squishy. Jason ran and snatched her up, and started screaming at me about how dangerous the horse is, like Buddy attacked her. I told him in no uncertain terms that he was a moron, and he could have killed our daughter. He said that he didn't know horses, which is very true, but I had just finished telling him not to do this! He was being careless. He has gotten over his initial "we have to get rid of this horse" idiocy, and admitted he was stupid... Thankfully Buddy did not put any weight on the foot that was on Sierra. Either he felt something squishy and knew not to step down, or he was startled by my shrieking. Jason and Sierra are no longer allowed near the horse without me.

What a fun day.