Tuesday, March 31, 2009

Anywhere else, they'd have laughed

We spent Saturday at the Autism Society of NC's annual conference, and it was well worth the 1.5 hour drive each way. I could make a never ending post about every tiny aspect of the conference, but that would be boring and time consuming, and anyway if you'd wanted to know EVERY tiny detail, I'm sure you'd have gone yourself. (Assuming you live in NC, anyway.) Anyway, to spare you all the details, I'm going to stick to the highlights.

Friday nights session was the latest legislation related stuff. a lot of it went over my head, but some of what I got from the hour:

  • Autism funding in NC was NOT cut.
  • There may be more tier 1 CAP slots available, though I think Jaymes will have grey hair by the time he gets his CAP. I was a little confused on what the difference is between tier 1 and 2, I -think- tier 2 is adult/residential care related?
  • Current projects include Christopher's Law, which is an attempt to get insurance companies to pay for autism related therapies and interventions and ABLE accounts, which are similar to college savings accounts, but would instead pay for lifetime care or special equipment needs for people with disabilities. I'm sure there was more, but I don't have my notes in front of me at the moment and am too lazy to go get them.
We left Chapel Hill that night around 10:30, got into Greensboro around 11:30, and decided to stop and have dinner because it's a rare chance for us to eat at a restaurant without kids (we have found the BEST babysitter, yay, and she does late night. Hooray!) so had dinner at Ruby Tuesdays. Unfortunely, halfway through the meal we discovered we weren't that hungry, so most of it came home in a to-go box. The salad bar was amazing, yum yum yum. We had cheese fries as an appetizer, and then I got this fried chicken breast covered in BBQ sauce, cheddar cheese, and tomatoes. They even pre-sliced it, which is great because I was barely awake at this point. We had a really nice waiter, and had a good time. Got home around 12:15, babysitter was still alive, and the kids were both awake. I'm surprised Jaymes refused to sleep, that's just not like him. I guess he felt he couldn't sleep knowing there was a pretty girl in the house.

We left Saturday morning at 7am, and boy were we tired. They had muffins and juice and stuff at the hotel, very tasty. First part of the day was the opening comments and award ceremony. This part was my favorite, especially the winners of the Christmas card contest. The one kid who won was an older teen (17 maybe? I'm a bad judge of age), and he walked up carrying a towel thrown over his shoulder. Reminded me of Jaymes, actually, except Waaaaaaaay bigger. He was very well spoken, but it was very obvious that he was autistic, and as he went into an explanation of his card design, it crossed my mind that anywhere else, this kid's speech would have brought snickers and mocking. Here, it brought loud applause and broad smiles.

His card was a group of super heroes, named something like "imagifriends" or similar- I can't remember or find it on their website. He took the microphone like he had just won an Emmy, and explained all about his reasons for creating a band of superheroes who treat each other and everyone else with respect, ending with much emotion and gusto by nearly shouting "and NO one ever deserves to be made fun or or treated badly because they're autistic!" Brought tears to everyone's eyes, and he got a standing ovation that lasted and lasted and lasted. I wish I'd thought to take video. It was really beautiful, it made a lasting impression in my mind, and I hope Jaymes grows up to be just like that kid, just as smart, and well spoken and capable. If that is my son's future, then I am hopeful, even happy.

The best of all the presentations was probably the first one, which was given by Geraldine Dawson, who works with Autism Speaks. Now, I've read a lot of online literature against Autism Speaks, but based on what I heard in this session, they're hardly the demon so many people make them out to be, and though they may not represent autistic individuals as well as they could, they are doing a lot of good. The session was "A vision for autism research in the future" and it was really, really interesting. I learned quite a lot. I'm going to share some of my notes from this session (yes, I'm about to go get up, find them, sit back down, and type them out. Go me!). Can't promise that they'll be in any order, or that some of them are any more than interesting facts...

  • Autism's average cost to society is $35 Billion a year (Wow)
  • People with ASD's tend to have more unmet needs than those with more widely understood conditions like childhood cancers, Downs Syndrome..etc simply because unless you've got the IN with someone with Autism, you just don't know what's needed. (I believe it)
Some suggested causes of Autism (interesting, I thought)

  • Genetics, specifically gene deletion in important areas
  • Prenatal exposures (Like my beging on Paxil throughout my pregnancy with Jaymes)
  • Maternal infection during pregnancy, or probelsm between the mother and baby's antibodies
  • Paternal age (I'm not sure about that one, I know we were both young when Jaymes was concieved...)
  • Abnormalities in the synapses (I have no idea, even though she explained it)
  • An excess of something called Glutamate, which causes increased excitation. Somebody someplace is doing a clinical trial of a drug that limits Glutamate, no results known yet.
  • Early detection can be done as young as 6-12 months (Yup, Jaymes was different as a young baby, we knew by the time he was a year old)
  • Early detection= early treatment= better outcome (duh, you all know that, why'd I type it out?)
  • Testing that can be done include MCHAT @ 18-24 mos, ADOS @ 12-24 mos (Why did they use the ADOS on Jaymes at Duke when he was 4 then? Hmm.)
  • The American Academy of Pediatrics is now recommending autism spectrum screening for every child at 18 months of age. If you're trying to get a diagnosis and your doc is hesitant, remind them of this reccomendation!
  • There is some link between kids with big heads and autism (Jaymes has a huge head, LOL, and so do most of the autistic kiddos I know. More room for brains, that's my theory. He's got a huge head because it's packed full 'o brains.)
  • Though early detection is key, kids diagnosed even after age 6 can and should be treated, and have just as good a chance for a positive outcome.
  • Learned some cool brain parts: Fusiform Gyrus is the part of the brain that controls facial perception, prefrontal cortex is the part that controls social cognitiion. I can't read my notes on the other parts, bad bad handwriting!
  • Ideally, kids with Autism should have 25 hours a week of structed therapeutic intervention (therapies, home ABA program, or a therapeutic school setting)
  • Autism Speaks is working to develop a standard of care for Autism, in an effort to help pediatricians and other professionals understand how to treat the disorder.
The other sessions were good, but not really very useful for me, in relation to Jaymes. Two were by Valerie Pardiz (author of Elijah's Cup). The first was pretty much just talking about her life, and her son's life. It was interesting, but it didn't really help me that much. Apparently she also has Aspergers, and refers to it every third sentence, but I dunno... You've got a PhD, you're speaking in front of tons of people on a regular basis... You're doing pretty well. Stop harping on your own issue and stick to telling us about your son. Her second session was about helping our kids become self advocates. It was pretty good. I hope Jaymes will be able to advocate for his own needs one day.

She showed some videos of her son, who is now 18 and has become a standup comic. He is pretty funny, but some of it kinda turned me off. i know the theory is that it's ok to make fun of your own disability, but some of the things he was joking about had a disturbing, sad truth to them.

Here is one that she played for us.

Oh, the other session was by a DAN! doctor, and it made so little sense I could not even concentrate on her. It was so deep into specific genetic stuff and cells and so utterly scientific, no one was really paying much attention. I wish she'd have dumbed it down a little for those of us who aren't rocket scientists! I was impressed though, even a DAN! doc admitted that vaccines do not cause autism, and that you cannot cure autism but you can treat it. Nothing was said about vitamins, supplements, and shoving gallons of weird stuff down your kid's throats. GFCF diet was mentioned, as well as hyperbaric treatment. What I understood of it, I enjoyed though.

They had an exhibitor area, with stuff for sale, tons of free pens (I love free pens!) and reps from a lot of the chapters of the autism society. I was very disappointed to see that no one came form Forsyth County, that's just sheer laziness. We should have been represented. I met one of the directors of the ABC school in Winston, she gave me lots of good info, and tried to talk me into a program that is "only $1000 for 6 weeks!" I'll be applying for scholarships there though for next summer and for some parent training.

Got Jaymes and Sierra a neat game called Out of my Head. You pick a card, and whatever is on it, you find the item inside the stuffed head. It's full of plastic rats, worms, tooth, screw, spaceman, ball, spider...etc. The kids love it. Jaymes is a horrible cheater, but he takes turns and plays!

Got lots of information, if anyone wants copies of stuff, email me and I'll send you what I have. Tons of nice pens, yay pens. Got a CD demo of a computer game for kids with autism too, and entered lots of raffles for stuff. I'm sure Jaymes hopes we do not win the 10 free hyperbaric treatments, LOL.

All in all, tons of fun. Met someone from ECAC, who gave me some excellent tips for dealing with the school, my various rights, etc. Good stuff. I wish I'd met her before the last IEP. IEP rant coming in the next day or so, by the way.

We'll definitely be going next year, lots of fun, met lots of really neat people, had some good food.

Wednesday, March 25, 2009

That post I negelected to write last night

And I'm taking the loser's way out and using an article I found on one of my forums (courtesy of the lovely Evergrey) as subject matter.


Thai 'Spider-Man' to the rescue

Firefighter Somchai Yoosabai embraces the boy
The child was persuaded off the ledge by his favourite superhero

An unusual disguise has helped a Bangkok fireman rescue an eight-year-old boy who had climbed on to a third-floor window ledge, Thai police say.

The firefighter dressed up as the comic book superhero Spider-Man in order to coax the boy, who is autistic, from his dangerous perch.

Police said teachers had alerted the fire station after the boy began crying and climbed out of a classroom window.

It was reportedly his first day at the special needs school.

Efforts by the teachers to persuade the pupil to come back inside had failed.

But a remark by his mother about his passion for comic superheroes prompted fireman Somchai Yoosabai to rush back to the station, where he kept a Spider-Man costume in his locker.

The sight of Mr Somchai dressed as Spider-Man and holding a glass of juice for him, brought a big smile to the boy's face, and he promptly threw himself into the arms of his "superhero", police said.

Mr Somchai normally uses the costume to liven up fire drills in schools.

Now, adorable ending, and what a cool fireman to get a costume on to save this kid. The fact that he keeps one in his firestation locker makes me wonder how many men really are like my husband though! What's with the grown men and comic hero thing?

Oh well, not my point. My question is, if this kid is in a special needs school, how on earth did he get a window open and climb out without anyone seeing him? Jaymes is fast, but if he tried that at school, they'd catch him before his fingers touched the windowsill. Sounds like this kid was either alone, or just being totally and completely ignored, to have been able to climb out the window and out of reach before teachers could stop him. I know it's another country, but I would think that in any language or culture, the idea of not leaving an autistic child alone to climb onto a window ledge would be an obvious one.

I guess I'm just glad the kid didn't end up splatted on the pavement, and that he was rescued safely, rather than grabbed and handcuffed or knocked around, as so many autistic people are during a crisis situation.

Tuesday, March 24, 2009

Pain and pitiful moanings

Ouch, I hurt! I'm trying very hard to find a doctor with openings this week, who also doesn't cost a fortune, because my Batty-Wreck injury is hurting me very badly. Hurts to sit, to walk, to move. Can't sleep because of the pain in my legs and back, and my wrist is bugging me too (the one I landed on). Seems like almost 6 weeks later it should be improving, not getting worse. I'm feeling very bitchy because well, it hurts everytime i move and I have no pain meds. I'm afraid to even ask once I'm at the doctor, for fear of being labeled a prescription pain med abuser. I'm not addicted to the damn percocet (haven't had any to be addicted to in weeks anyway!), it makes me feel horribly woozy and throw up, but it also makes it so I can sleep without waking up in pain all night long. I need some more. The Ibuprofen kills my stomach, and doesn't really help at night, even when taken with food as my beloved nursie friend Tara told me to do.

And no, I'm not riding, and I'm doing as little carrying and hauling as possible, but I still have to walk to the bus stop every day, and Jaymes and Sierra still demand to be carried a lot.


Real post coming later tonight.

Monday, March 23, 2009

I forgot!

Did I mention that we'll be attending the annual Autism Society of NC's conference? I'm very excited, we'll get a ton of great information. Jason is under orders to take good notes, because whatever we learn will go on my site.

Here's to hoping for good information, new friends, and delicious food from the fancy hotel it'll be at.

Special Olympics Jokes

I hate to get all heavy on this blog, I prefer a more lighthearted, irreverent, giggly type post. I also realize that the majority of my readers don't need to hear how I feel about Special Olympics jokes and the "R" word, because you guys feel the same way. But, since in my last post I noted someone had Googled looking for Special Olympics jokes and ended up on my blog, I'm going to make this post. Maybe someone googling that same phrase will read this, and get something out of it.

I frequent 3 horsie type forums online, and actually a good portion of the posting on those is non-horse related. A lot of it is endless fighting about something minor (OMG you're riding yearlings?) that really in no way effects the other posters. Pages of bickering ensues, and then eventually someone posts this picture to try and make a funny point to end the fighting:

(Ok, ignore the part about driving a Honda, normally it says "Arguing on the internet is like being in the Special Olympics.." I just couldn't find the one that is normally seen on the boards.)

People get all surprised and upset when they're called out on this. Apparently anyone who doesn't find that funny must just be a real stick in the mud. Maybe I'm humorless, but when I see crap like this, all I can think of is how horrified that child's mother would be to see her son's image used to degrade people with developmental disabilities. It would be like me posting a picture of Jaymes doing something incredible online, then later finding it had been captioned to make fun of him and anyone like him. I would be shocked, disgusted, and angry. Why would someone find humor in a photo of a child's achievement being mocked?

I see kids with various disabilities twice a week at therapy, and I've gotten to know their parents, we're all pretty friendly in there. There's one sweet little boy, N, who comes in with his mom on Thursdays. He is the cutest little thing you've ever seen, and he knows more signs than Jaymes or I ever will. He makes the nicest little art projects in therapy. I can't imagine anyone mocking that adorable little boy.

If I posted on that same board, a picture of an African American man, with some funny caption that demeaned the entire black race, I'd have a hundred pages of furious posters telling me how awful racism is, and how unfair and inappropriate my post was. WHY is there a difference? Why AREN'T people outraged when a Special Olympics joke or pic is posted? Why is it no big deal to call someone a "retard" in school, but calling someone a racial slur will get a kid suspended? In my eyes the word "Retard" is just as awful as the word "Nigger." Hate speech has no place in society, doesn't matter who the hate is directed at. It's ALL wrong.

The ARC of America has some good reading on the "R" word and hate speech in general. Click here.

Click here for the "R" Word Campaign

Those of you who go on the forums, and see these things used, please stand up and make people aware that's it's just not ok.

When at a loss for blogging material, look no further than your trusty StatCounter!

Often, I find myself unable to come up with good blog posts. It's incredibly frustrating. However, I've got a secret stash of post ideas, courtesy of my beloved StatCounter (AKA stalker tools). In addition to telling me various info about my readers, StatCounter has a little subsection called "Keyword analysis" that shows me what people have googled to get here. Some of them are bizarre, some sad, some funny. A lot of them are more logical. Here's a screen shot of today's keyword analysis:

Now, having drawn my best attempt at a line (using a laptop trackpad) through the pointless crap (AKA misspelled variations of Don't Bite The Dog), if you squint reallllllly hard you can see the things people have searched for to be dropped unceremoniously at my blog (poor souls).

The bizarre:

"Truly disturbing websites"

Well, I guess I'm a little weird sometimes, but truly disturbing? Inasnity is in the eye of the beholder, I suppose!

"Toddler pain farting"


The funny:

"America gots talent cookie keys youtube"

I like cookies, but keys and Youtube? This sounds like it could end up being another "Cake farts" (don't google it, trust me, you do not want to ever see it. I'm still traumatized.)

"Is it ok for a dog to bite?"

Dunno if the Googler wants my opinion, but I'd hazard to say that no one wants a biting dog. Ok, maybe Michael Vick, but for us "normal" folks (and I use the word normal very, very loosely when referring to myself) the non-biting dogs are preferable.

"build your own hyperbaric chamber"

I'm not much of a DIY-er, however I think this one is clear: Leave the high tech medical equipment manufacturing to the professionals. Can you even imagine the possible injuries of using a hyperbaric chamber you made by yourself? Eeep.

"Feel the need to bite"

I can relate to this one. We all feel the need to bite someone, occasionally. Whether that be the annoying neighbor child whacking your horse with a stick, or the lady at the jewelry store who, when you come in to have a ring cut off because your finger has swollen, says "You must have gained a lot of weight for it to be stuck so good" (thaaanks.) Luckily, most of us do manage to curb the intense desire to knock-er nibble, some common sense into people.

"Baby squirmy autism"

I don't know why, but this makes me smile. I guess because that would be a great description of Jaymes when he was little. I'm not sure what they were asking, but I like the wording.

Then there are the ones that make me sad...

"Special Olympics jokes"

A post about this is coming... Beware. It's something that I feel VERY strongly about.

"Are autistic toddlers happy?"

I sure hope they are. I know mine is, except when he's angry. Do you think this Googler's child smiles and laughs? I hope so, because I know every giggle and smile Jaymes gives me makes my day.

"Toddler losing speech"

Another one I can relate to. Jaymes seems to hardly speak anymore, except to ask for a select couple things, and even then he's garbling his words up so much I can't understand him. What used to be a clear "want yogurt" has become "wa yoaht".

"autistic "he looks fine to me""

I think at some point in the beginning of our quest for a proper diagnosis, every parent of an autistic child has heard this one...

"He looks fine to me"

"he's a late bloomer",

"boys will be boys".

Frustrating, isn't it.

Anyway, StatCounter keeps me amused. I like seeing where people have come to my blog from, and what they've googled. I wish my site didn't come up for people who are seeking Special Olympics jokes though.

Sunday, March 22, 2009

There's a little of the spectrum in us all

Especially me, apparently! However, you'll be amazed to hear that I both attended a social event, and survived (read: enjoyed) said event. I know, very unlike this particular blogger. I generally prefer my social interaction to be from behind a computer or at the other end of a phone.

One of the moms at Jaymes' therapy place comes right after Jaymes goes in for his second session (PT), she's got an older boy who just looooves his DVD player. Sierra thinks the DVD player is pretty cool too. I find myself humming along with the Signing Time theme song, which is probably another symptom of my impending fall over that narrow narrow ledge that is my sanity. Anyway, normally she torments me with delicious looking food in magazines, but last Thursday- No the one before that? She invited me to one of those skin care/make-up type party things. I've never gone to anything like that, however food was promised, and well, I really really like her and I feel like I need to get out there and be like everybody else instead of the surly recluse I've become. Not that I dislike being a surly recluse, with my very own blog full of minions to make me feel important.

Anyway, I obsessed about it for a couple weeks. Stupid things freak me out. Where will I park? What if I get there too early? What if I get there too late? What if no one's home? What if I come on the wrong day? What if i'm wearing the wrong thing? What if I back into her mailbox...etc. I obsess. What can I say?

Finally (the day before the event), I decided this was an opportunity to maybe actually make some friends so I don't sit around alone 24/7 trying to make up for my social awkwardness by whining over the interwebz to anyone who will listen.

Next day, I actually put something on besides jeans and a plain T-Shirt, wear my hair down instead of in the typically lazy ponytail, and -gasp- wore jewelry. Not my wedding ring mind you, that's still in pieces unfortunately, and not likely to be resurrected anytime soon because of how much the repair will cost. -Hops back off the tangent- So I grab my trusty buddy, Sierra, so I don't have to go to this by myself, and we head off.

Quick note about the advantages to having kids. If, like me, you can't do things in social situations, a cute little toddler is your number one crutch. Because, see, I'm not technically alone, and I can mutter nervously to Sierra all I want. It's like having a friend along to comfort my nerves, except she looks at me like I'm a fruitbat. Before I had kids, I used my dog, Boo-Boo similarly. As a teen I was super neurotic about going anywhere alone, and Boo was a therapy dog. so I just brought her with me everywhere I went, and I could do it. Of course I have progressed to being able to walk into stores alone now, though I still depend on having a kid with me 80% of the time.

There's that tangent again... Ok, back on track. Drove out to Walkertown, about 20 mins. Fun drive, I like driving past other people's horses and there were some really pretty places out that way. Her neighborhood is one of those subdivision type things, realllly pretty. Very nice neighborhood for sure, beats mine and I'm sure her neighbors are a lot more pleasant than my own... But I think I prefer to space and sleepy quiet my neighborhood provides. I'm weird like that.

I was the 2nd or 3rd person there I think, and actually I drove right past her house and had to turn around in a neighbor's driveway (the only one with a friggin COP CAR parked in it, only me!) and then parked, while being panicked at being the 2nd or 3rd person. Then I had to worry about whether I'd have to knock on the door, or what. I know, I'm really really bad in social situations. Thankfully for me, they saw me coming and opened up the door.

It ended up being a lot of fun, and once people started coming in I felt a lot less nervous. Sierra did her usual "I'm cute, look at me, feed me cookies" thing, which helped. Jaymes would have been right at home there, there were a couple special needs kids his age or a bit older. However, a Jaymes break was nice. Sierra ate her weight in cookies and grapes and punch. I had to eventually cut her off.

The food was awesome. She had the worlds best cookies (lemony type something? Yummm), scalloped potato something (No, I can't remember names of things), Chocolate strawberries, fried apples, crackers, grapes...etc. Very, very tasty. I may have to move in and sit under their table at mealtimes, munching. I wish I could cook like that!

The actual selling portion of things was really kinda fun, lots of joking around and laughter. They had us rub this green goop on our hands until we felt gritty stuff moving around- and then they told us what the gritty stuff was.


Apparently it's dead skin. Uh-oh. I knew there was a reason why I shy away from make-up and fancy skin care stuff. I find out things I didn't want to know! Nah, it was funny, and the hand that had the stuff on it is considerably smoother than the other. However, that's about the extent my skin will ever be treated to fancy stuff like that. I'll stick to shower gel, lotion, and body spray. I think Jason would kill me on the spot if I spent more than $30 on that kind of stuff, though it would be really neat to be able to.

Jason was smarter than to send me to that event with money, so all was well in the financial department.

We watched a video of her son at Victory Junction , basically a camp program for kids with various special needs. It looks like a ton of fun, and I know my friend and her son really enjoyed it. I'd love for Jaymes to go, but I read through their criteria and I don't know how long it'll be until he meets that criteria. They have to function at a 6 year old cognitive level. No clue when that'll happen. They also have to be able to communicate their needs, which seems kind of unfair for kids with autism, but I can understand the reasoning behind it. Oh well, when the time comes, we'll see what happens I guess. I don't know if I could handle a week without my baby boy!

Back off the tangent for the third time... Point of this post- I sucked it up, got out, and had fun. Hooray! I guess only time will tell whether I was socially acceptable to be given another opportunity to socialize!

Like I said, there's a little of that spectrum in all of us. I'm actually a million times better than I used to be. Before Jaymes was born I couldn't walk into a store or building alone, I could not make phone calls, or cross the street in front of cars stopped at a light. I couldn't hold a job, because I was too anxious to concentrate on the work, and I certainly couldn't talk to a stranger in a waiting room.

No, I was a chickenshit. I'm a lot different now, but all of those old fears are still there. I've just learned how to fake it on the outside and eventually begin to enjoy things despite my fears and worries. Having kids helps there, you can't be too shy to make phone calls or go to appointments when you have a special needs kid.

Jaymes has done more for me than I have for him.

Thursday, March 19, 2009

It's Okay!

How many times have you been at someone's house, or in a waiting room, or in a store and your child is doing something he shouldn't be, and when you try to stop him from whatever that something is, the person you're with says "Oh no, he's fine! It's okay!"? (Wow, long run on sentence)

So often, when we're in a waiting room, Jaymes will start doing something he should not be doing. Maybe it's an obsession with someone's purse. I'll tell him to cut it out, the person being harassed says "oh no, it's okay!"

So I feel like an idiot for continuing to tell Jaymes to stop, or for pulling him away but I also don't want him antagonizing other people and thinking that something he knows perfectly well is not allowed is fine.

Why do people do this? is it a politeness thing? Do they not want to offend the parents? I'd much rather that person being poked at by Jaymes give him a good, stern NO. If it's really bothering them and they're saying "it's ok" just to be polite... well that annoys the hell out of me! Don't say it's ok if it isn't, and even if it is ok, it's not your place to make me as a mom feel like a moron for enforcing the rules!

Wow, this is a godawful post. I'll re-write it later probably. My apologies, folks.

Wednesday, March 18, 2009

I take it back

Hooray for respite. All is well in the world. LOLcat?

Is respite care realllly a break if it takes more effort from me to coordinate than watching my own child does?

Before I begin, a hilarious video from fellow blogger Whitterer On Autism

Now, giggling finished, on to the whining.

Don't mind me, I'm just feeling really discouraged. I know that the respite folks are doing their best, and to their credit they got me someone on very short notice last Saturday, which was wonderful and very much appreciated.


We've got 48 hours that expire on April 4th. We've used 5.5 of them, and we're going to end up losing hours if we don't use as many of these as possible before they expire. This will be the 2nd or 3rd time the hours have expired without me being able to get use out of them, and it's frustrating me. The person who we'd gotten set up with to watch Jaymes has shingles, and obviously can't be around him right now, and apparently there isn't really a fall back plan. It had been my hope anyway, to have a couple people because availability is an issue and that would open up more times.

The battle for respite has been going on for months and months. I think I remember going in and doing an application with our original case worker last summer. That's a long time ago. I'm losing the desire to constantly call, organize things, ask respite folks their schedules, organize theirs with mine... Because all it's gotten me is 2 days without Jaymes. Once for an hour and a half, and once for four hours.

I still do think there's a way to use as many of those hours as possible by the 4th, but no one will call me back! I do have the phone number for someone "higher-up" but I'm really not wanting to keep doing that, it doesn't seem fair to the person we're supposed to be dealing with, and I doubt the director of the program wants to deal with me on a regular basis.

This is just frustrating. I know it's a free service, and a gift for all intents and purposes, and I appreciate it. But if it's a gift, why can't I actually HAVE it? I'm not being unreasonable, I've said send ANYONE (they're all trained and background checked, at this point I'll take any living, breathing human body!), at ANY time on ANY day. That's pretty flexible!

I'm not sure how the losing hours thing works. I know that a few people have told me that the funding is being cut, and that they will not continue to give us the 48 hours if they see we're not using them. I wish there was a way to show on paper that the reason we're not using them is because the hours are there but the people are not. It's not my fault or Jaymes, and we shouldn't lose out on hours because of something we cannot control.

I do not like being the "squeaky wheel". It's not comfortable for me, I'm not good at it, and I always end up feeling like a demanding, unreasonable witch even though I'm always polite. I'm not sure what to do. I don't even know when the person who handles Jaymes respite is in the office, and emails go unanswered.

I'm very, very frustrated.

Monday, March 16, 2009

Musical Monday, this time on time!

This one is a really new song, and I'm rather ashamed to like it as much as I do, because it's one of those completely redneck hick type songs... But I guess we're pseudo-rednecks anyway, or at least I am so it works.

Sorry, it's someone's random slide show type thing, the ones with the actual video that goes to these songs always have embedding disabled, meh. Listen to the song, and apologies in advance to poor preggo Julie, who despises my music but loves me despite it.

Sunday, March 15, 2009

Hyperbaric Chamber/ Oxygen Treatment for Autism

The next big thing, or a crock of bullshit? I have no idea. It doesn't appear that there have been enough studies done yet to know whether there is anymore merit to this idea than there is to the whackaloons who advocate chelation therapy.

One theory is that autism is caused by a lack of oxygen to the brain. Another is that autism is caused by swelling and inflammation of the brain, which kind of comes back to that first theory, in that the inflammation is obstructing the flow of oxygen.

Based on these theories, the idea of hyperbaric treatments makes perfect sense. Increased pressure in the chamber causes blood vessels in the brain to constrict, which eases the swelling and allows more oxygen into the brain itself. Supposedly the combination of higher pressure and more oxygen can activate previously dormant areas of the brain and even make the brain regenerate tissue more quickly.

The only study I've found online does make it sound like a good thing to explore at the very least, assuming you have the resources to do it. The study took sixty two kids with autism (ages 2-7) and put them into the hyperbaric chamber about an hour and a half per day, equaling out to a total of forty hours spread out over one month. Half of the kids got a 24% oxygen at an atmosphere of 1.3 atm (whatever that means) and the other half got plain old air in a barely pressurized room.

80% of the treatment group (the ones who got the 24% oxygen) showed significant improvement in eye contact, behavior, cognitive and sensory awareness, and receptive language. 38% of the control group showed improvement.

30% of the treatment group were pronounced "much improved" by their doctors, vs only 8% in the control group.

Now, my questions... First off, the numbers DO say something. Obviously there was some difference, in enough of the kids that it was probably not just coincidence. But the study didn't specify whether all the kids were receiving therapies, and what types and at what frequency. It also didn't say whether all the kids were receiving the SAME intervention. were they all attending Speech and OT? Where they all in school? Were they all untreated? Were any on medications?

There is also the issue of diversity. Autistic kids are like snowflakes, no two are the same. An autism study is going to be different than say, a study of heart defects or something like that. What works for one kid with autism might be a disaster for another, so that time spent in the chamber could have affected them all differently. Or not at all. Or, the researchers and parents could have seen progress where there is none out of wishful thinking. I know that when Jaymes starts a new medication, I tend to imagine he's doing better and only later realize I was seeing what I wanted to see rather than what was.

I guess my point is that I'm a very skeptical person, and I do not know a lot about how these studies are done, but it seems like it would be nearly impossible to get an unbiased, accurate assessment of improvement. Like I said, I'm uneducated as far as clinical studies go, so this is just my opinion.

If it really does work though, it's really a cool thought. A way to help heal the brain and improve behavior, communication, awareness that doesn't involved pumping chemicals, medications, eye of newt into our kids? What's purer than oxygen?

But then my skeptical side returns when I try to visualize Jaymes being treated in a hyperbaric chamber. I've never been in one myself, but I've seen a lot of them on TV in various medical type shows like ER and House, and if what I'm seeing on those shows is realistic, there's no way in hell Jaymes could handle such a treatment. The chambers are small and cramped, there are bright lights and scary noises. you have to stay put for long periods of time. The increased pressure can cause ear pain and I'm not sure what effect it would have on kids like Jaymes who have ear tubes.

Jaymes doesn't do small spaces. He has very very sensitive ears, and the one time we took him on a plane, he was quite miserable. I can't imagine how stressed and unhappy an hour and a half of that would make him. And to have to do it day after day, the setting up and heading out to wherever treatment would take place, the treatment time itself, and the calming down time afterward. It would have to be some very very impressive improvement to make it worthwhile to me.

I'll be really curious to read about new studies and information on this type of treatment, I guess only time will tell if it's worth trying or not. I doubt that right now any insurances would cover it, but if you've got a spare $15-20K lying around, you can pick up your very own home chamber. Boy, that seems like a lawsuit waiting to happen, doesn't it?

Friday, March 13, 2009

Sometimes all the accomplishments get lost in the daily challenges

And you forget about the good until something happens to remind you. Jaymes and I have accomplished so much in the last year or so... Thinking back to November of 2007, when we moved from Florida to Nort Carolina, it's amazing, really.

Where we were: Living in a crappy house in an old fart's neighborhood on a golf course where they measured my lawn. I had recently lost my Parent Advocate job (that summer, so maybe not so recent) and was incredibly depressed. Was working very much part time babysitting my friend Julie's kids, which was a lot of fun. Jason lost his job not long after me, because of me probably... Then was at Walmart making $8 an hour. We were drowning in debt, still in the middle of a bankruptcy. I had gained a ton of weight and was at 160 lbs and hated it.

Jaymes was in a wonderful school, but that's about it. He had gone through 4 speech therapists. One told me he'd never speak, and was generally a nasty witch, so we told her we needed to "take a break." Another taught him to pound on doors, which to this day means no one sleeps in late EVER. Another gave up on him a few weeks in, because he wasn't progressing. He had an incredible OT (Kaycee Macy) who worked with him for almost 2 years, then just -poof- disappeared, never heard from her again, which was seriously a shame because she was incredible and she really brought Jaymes quite far. When he began with her he screams the entire session, couldn't hold 2 blocks at once, couldn't stack or do a puzzle... nothing. By the next year, he very much respected her. We had just set up SSI for Jaymes, and had a wonderful pediatrician who I miss horribly because he truly was one of those greats. if you're in SW Florida, I very highly recommend Dr. Benjamin Helgemo of Helgemo Pediatrics. He's an autism friendly doc who actually listens, and really tries his best to figure things out.

Jaymes health was crap. He had fevers nearly every day. The school nurse sent him home to me at least 3 times a week with unexplained fever and diarhhea. He had the perpetual sinus infection, ear infections, was never healthy. He never really grew, and always looked so sickly. He had no words at all, had horrific tantrums, and we were all miserable.

Sierra was just learning to walk, and she was such a joy. She still is, although her new obsession is trying to lick my arm with her slimy, slimy little tongue while singing "Tongue-Tongue!"

And now we're here,. we've come so far:

We're out of debt (my hospital bills not counted, I'm paying on those slowly). No credit card debt, and my credit is getting better. We finished off our Ch.13 bankruptcy fully, and THAT is an accomplishment. We made allll those 3 years of payments, never missed one. I'm very proud of us. Jason's got a much better paying job, and I've got my little bit of extra income from Adsense and Blogher Ads. We can afford my horse, and we live in a beautiful little house in a wonderful town. My neighbors are jerks, but I don't care, I love where we live and I love having room for a horse and my gardens and everything.

Jaymes is in a school that is nowhere near the quality of his old one in FL, but he has a teacher who seems to be very fond of him (though definitely not of me) and who genuinely cares about him. He's in Speech, Occupational, and Physical therapies outside of school with the three best therapists I could ever ask for. He has made leaps and bounds speech-wise, and watching his therapist "S" working with him is really just incredible. I love watching him sit in that little room with her and succeed at things. Same goes for OT, therapist "R" is absolutely wonderful. She's gotten him eating all kinds of foods, and she's given me so many great tips. His PT is also awesome, she's got him to where he can kick a ball (if he wants to) and ride a tricycle. Very cool stuff.

We have the BEST case manager, Julie, who has helped me get Jaymes his therapy swing, helped us with our Xmas situation, found Jaymes an autism friendly dentist, and is working on an application for a special play/therapy area for Jaymes. She's been such an incredible help and support, and it's hard to imagine what I did without her!

We've got a GREAT new pediatrician, Dr. Albright, and an excellent psychologist/developmental pediatrician, Dr. Klinepeter. They both work so well with the other people dealing with Jaymes, and everyone has managed to communicate enough to make things work out smoothly. We're still trying to get Jaymes' meds settled, but all in all he's doing pretty well.

We've even got a really nice grad student (rec. therapy student) working with Jaymes, and he loves her already.

All in all, we've got a really remarkable team of professionals working with Jaymes and helping him reach his potential. He has come SO far, you wouldn't know him if you'd met him before we moved.

No more fevers, no more sinus infections. jaymes is getting big, and looking great. He still has crappy ears, and he's got bad skin issues, but in general his health has improved drastically since the move. He has a big back yard he can play in, kids in the neighborhood... A really cool childrens museum in Greensboro, and that Bumper Jumpers place too.

We've gotten SSI set up fully, get diapers through insurance, gotten respite set up (though that's been one big messy headache, to be honest), gotten Jaymes on the CAP waiting list, got a speech device ordered for him... We're working on the handicap parking permit so there will be no danger of Jaymes running in front of cars walking alllll the way from the back of a parking lot. We're working on the play area. We got a scholarship to attend the Autism Society of NC's annual conference later this month.

I finally made my website dream a reality, and this blog has just taken off. Thank you, all you anonymous lurkers and the ones who comment too, I am so honored to have so many of you reading what I have to say.

I've finally gotten set up to go back to school. I was awarded $1700 in Pell grants, and will be starting this summer on my path to becoming a Special Education teacher. Scary thought, isn't it. Hide your children.

I let myself get down about little things. In the midst of a bad day with Jaymes tantruming and Sierra whining and Jason nagging at me, I forget the tremendous amount of progress we have made. Progress I have made, Jaymes has made.

We're awesome, and it feels so good to remember that sometimes. Jaymes is the best kid there is, and challenges or no challenges, I am beyond blessed to have been gifted with that smiling, giggle, squirmy little goofball.

Edited to add this photo I found on Myspace... One of my very dearest friends from Florida, holding an hours old baby Jaymes. AWWWWWW.

Too much time on my hands...

Real blog post coming later, I promise. Until then, enjoy some more of my works of art. I love fooling around with Photobucket's motivational poster making tools. I know, VERY mature.

Thursday, March 12, 2009

Some new stuff

Nothing too thrilling to post today, other than that I did finally take the placement test for college, and also got my financial aid letter. they're giving me $1700 in Pell grants! Yay!

Anyway, I added a ton of new blogs to the right hand sidebar thingy under "of interest."

Check them out, there are some really great blogs there. Oh, and the Ninja one is the reason this blog will never go private.


Oh, and here's a really amusing article that really sums up my feelings about a lot of things, it even has a funny image for you visual learners! Woohoo! Click here.

And "whackaloon" may well be my new favorite word. Yessss.

And another thing: Add me on Twitter. I'm Dontbitethedog (original, huh?)

Wednesday, March 11, 2009

Jumper Bumpers: Fun and Agony

Last Sunday we headed off with the kids to a new place in Greensboro called Bumper Jumpers Indoor Playground. My mom had seen an article about it in the paper, and thought it looked fun. It's in kind of a crappy neighborhood and I would definitely not want to be there after dark because of that, but it was really, really cool.

You go in and sign a waiver in case you or your child falls and maim yourselves, then anyone jumping (parents are allowed to jump!) gets a wrist band. One thing that irritated me was that the girl put Jaymes' wrist band on very loosely, and he got it off almost immediately and lost it on one of the bouncehouses. Not a huge deal to me, but apparently to them. They are VERY neurotic about the wristbands and pretty much chastised me for letting him get it off. We found it, they gave it back to me and I stuck it in my pocket. More on that later.

There were a bunch of inflatables there, from one that was like a little round corral with bouncy animals the kids could sit on, to a huge obstacle course that ended in us having to climb 6-8 feet straight up. There was one that was just a big open jumping area with basketball hoops and balls all over the place. A lot of climb-up-slide-downs in varying shapes and sizes. Jaymes loved the big obstacle course, Sierra was partial to the Sierra Sized Bouncey with slide.

The floors are covered in those soft puzzlepiece mats, and it's really a very childproof area. Somehow they managed to keep all cords, wires, and those things that blow air into the inflatables hidden from view- that impressed me. It was nice not having to stop Jaymes from going after things; there was nothing for him to go after!

I took Jaymes, Jason took Sierra and my mom went along with whoever she could keep up with. The first thing Jaymes wanted to do was try every bouncy. So I ran behind him, panting a little more heavily after each trip. And then came the Obstacle Course.

Please keep in mind, I fractured my pelvis not a month ago. I also have asthma. These things generally do not bug me much as long as I avoid sitting on the ground, crawling, climbing, doing stairs, excess exercise etc. Guess what I did on the obstacle Course? All of those things! I climbed up a steep set of plastic ladder things attached to the inflatable, huffing and puffining. Make it to the top, only to see Jaymes' little feet disappearing at the bottom of the slide, through a disturbingly small opening into a tunnel. Slide down, hoping I don't land on Jaymes, which really wasn't an issue as he was WAY ahead of me. Ram into the opening that I was supposed to climb under, because I am a little larger than Jaymes is. Slither down on my belly and creep toward where the boy has gone, only to find myself in a larger chamber with 4 possible escape routes. Hmm, which way did he go? Turns out 2 of the 4 tunnels go back out front, and are not supposed to be used as escapes, but entrances. So I try a 3rd, and find myself face to face with jaymes rear end, from an awfully big height. At this point, I'd found myself facing a 6-8 foot tall inflatable wall with just those little plastic nubbies to get up on. I am shocked that Jaymes could climb that, he's good. No toruble at all, he just scaled it like a little monkey. Figuring that if he could do it, so could I, I took a deep breath (I'm scared of heights) and followed him up. It was easier than it looked, and I guess if I'd fallen I'd have bounced right back up, but man it was some hard work! I took so long to get up there that when I reached the top, Jaymes popped up behind me (having slid down and come all the way back up through while I was climbing up), shoved me out of his way, and went down the slide to do it all over again. The slide was FUN. I bounced the whole way down, guess maybe I sat down too hard or something, but it was really fast and I admit to giggling like a moron the entire way.

At this point, I think it was safe to say I was entirely covered in sweat, had a beet red face, and was wheezing just a little bit. But hey, what a great way to burn some calories, right? I reallly love bouncehouses. Have since I was a kid, and I've always been irked at not being allowed to jump with the kids most places. Anyway, we decided to take a break. By break, I mean Jaymes streaked off past Jason and Sierra, and I shot toward Sierra, scooped her up and told Jason Jaymes was all his. Yep, I'm that evil. At this point, I get to hear the story of the rotten little boy, his book reading cellphone talking mom, and Sierra. Apparently Si-Si was bouncing in the biggest open bounce house, the one with the balls, and some little boy about Jaymes age came in, knocked her down, and literally started jumping on her belly and head and laughing at her. She didn't cry, Jason said she curled up in a ball and sucked her thumb. My mom yelled at the kid and he stopped and ran off, and Jason rescued poor Sierra, who didn't seem too traumatized surprisingly. Later, everytime we saw the mother of the little boy, she was following about 20 feet behind him reading her book or blabbing away on the phone. All baby jumping-on aside, who the hell comes to such a fun place to read a book or babble on the cell? That kid was a pushy little snotball. Literally a snotball too. Something about watching a kid eat his own boogers for 15 minutes straight just makes you want to claw out your own eyes. And it's like a train wreck, you just can't look away, you're mesmerized. Plus I was too tired to stand up and move.

Now, back to wristbands and rules, and staff. I've never been to a child oriented place that was SO strict about things. I guess I understand why, but I think more tact and respect could have left me with a better taste in my mouth. We had several encounters with staff, and other than the first, they were all kind of uncomfortable. First off was the young woman who put the wristbands on. She was very nice and everything, but she didn't put Jaymes' band on well and didn't tell me that would be a huge issue later on if he got it off. She just said to keep it with me if it came off. When it came time to go in, the bomb was dropped on Jaymes.

"He can't jump with that blanket."

Oh shit. Jason took Jaymes to the car and they put Pinky (the blanket has a name, yes..) to "bed" in the trunk and headed back in. He was crying and begging for it in his sad little "break mommy's heart" voice. Over and over with the "teekity" which is how he says it's name. I understand the no blanket rule, it would be a safety hazard, could trip Jaymes or other kids and it makes sense. But maybe that should be listed on their rules... For a normal child, it wouldn't have been a big deal, but for an autistic one, knowing ahead could have given us a chance to prepare Jaymes and leave Pinky back at home and get his tantrum out before we got to the play place.

Luckily, other than some whining now and then, Jaymes was too busy going crazy tearing through the play areas to worry tooo much about Pinky. Unfortunately he went crazy enough running around to lose his wristband. Who knew it was such a big deal. I told one of the staff members, a very spoft spoken girl who seemed pretty nice. She asked me if i knew where it was, I said no, and then she started asking Jaymes where it was and lecturing him on why he needed to find it and keep it on. I politely mentioned that he is autistic, and doesn't undertstand what she's telling him to do, and that he doesn't talk much. She says "Oh, well he looks fine to me!" Ok, that's great, but it doesn't mean he's going to go lead you to where his wristband is. They finally do find it and give it back to me, so I thought I'd just shove it in my pocket for safekeeping because Jaymes would just lose it again. A few minutes later we get approached by a young man, who is kind of accusatory in demanding to know why Jaymes isn't wearing a band. I take out the band and show it to him, and he launches into this tirade of "He needs to be wearing that, you better have one and the numbers better match your bracelet or we won't let your child leave." My thoughts? Uh, I showed you the band. I paid the $8.50 for him to jump, and I have the reciept so please try and keep my child from leaving when we're done. I wouldn't have been bothered at his wanting to see the bands, but he didn't check the numbers and he was pretty rude. Not my fault the original person didn't put the band on tight enough!

The rest of the time I felt like we were really being scrutinized by the staff, but I ignored it and we had a blast jumping, climbing, bouncing, and sliding. Jaymes was a wild man, flubber going Boing Boing Boing off the walls. Sierra was getting tired, and so she wandered off to snuggle with Jason. Jaymes could have gone on another hour or so, but I was dead beat. I'm not in the best shape to begin with, plus injured, plus the asthma. My mom kept asking me if I was ok, being so red and puffing and sweaty. It was a lot of fun, and we'll go again for sure.

All in all, the place is one of those that autistic kids and "normal" kids are one and the same. They're all too busy jumping to notice each others differences, and Jaymes was too busy having fun to do anything that would label him as obviously autistic. I don't think the place is parent friendly at all, but then it's a place for kids and so I can live with that. I love that we can bounce with the kids, and I love that only the kids have to pay admission. $16.50 for a day of bouncing for all of us was well worth it.

Now for the video! They're LOUD, and bouncy, for obvious reason.

First off, we have a Si-Si on one of the smaller obstacle courses.

Next, Sierra on her favorite slide/bouncy. It was hard for her to climb up, and yes, that is my mother yelling "college girls gone wild!!!" Don't ask me!

Jaymes jumping through hoops for my approval.. Sorta!

Jaymes and I climbing up the ladder of death, about halfway up and still filming! How's that for dedication to you loyal readers?

Sierra and Jaymes bouncing together

I'm still sore, and it's Wednesday.

Tuesday, March 10, 2009

Musical Monday, a day too late.

I had decided awhile back to start doing a music related post to spare myself the task of writing new posts on Mondays, and to share some of my favorite stuff with the world. Ya'll love country music, right?


-crickets chirping-

Well I don't care, you'll be subjected to it every Monday from now on. Except not today, as it is Tuesday. So without further ado, musical Monday, one day late.

First one.. I reallly reallly like this song because it totally fits for my bastard ex-boyfriend, who incidentally is Jaymes' sperm donor. Yeah, the one who says he doesn't have a child. The guy who got upset and hid under the bed. We wonder where Jaymes got it?

Nuff said. Listen to Kellie Pickler, it's a good song.

And then our current family theme song, it's so our life. I think a more appropriate title would be "Shit Happens", but that wouldn't be possible, as we country music folks don't curse in our music! Anyway, enjoy some Sugarland.

Oh and I apologize in advance for the typos in the lyrics on this video, it's making me crazy to look at and I have the urge to strangle whoever made it. -twitch-

Now that I've said that, watch this post be full up of typos.

Monday, March 9, 2009

ABA, Lovaas, and Autism Acceptance

I've been reading around the web lately. It started out on Youtube, watching some ABA session videos. then I saw a "related video" that was called "Slaps, Screams, and Autism" which was actually a video rant about an old article from 1965, the article I posted a couple days ago here.

Having read that article, which painted a picture of Ivar Lovaas I hadn't yet seen, I went on reading about him and ended up at Autism Diva's blog. I read through the comments on her Lovaas/ABA post and some of the comments really got me thinking.

I doubt many people (be they parents or not) think the methods described in the Slaps and Screams article back in '65 are acceptable. I know that I found myself teary eyed and sick to my stomach only halfway through reading it. Electric shocks and slapping to stop stimming behaviors, withholding meals to get the kids to perform correctly (and earn a spoonful of food), slapping and screaming... Horrifying. The photos? Disgusting.

However, the method has evolved a lot since 1965. Modern day ABA doesn't involve shocks or slaps, kids are fed and treated with kindness. It does work, and it's touted as the only real therapy that works for autistic kids.

I have no experience here, Jaymes is still on the CAP (medwaiver) waiting list, who knows if he'll ever get services. This is all just my observations and opinion, so please do take it with a grain of salt.

I've watched a lot of videos, read a lot of ABA success stories. I know people who swear it's the best thing, the only way, their saving grace. In particular, I have watched all of Squid's videos of Leelo, and it's been a really great way to see how ABA works. He can answer questions like "where do you live" etc... Useful stuff, and it's impressive to see.

I know that in daily life, and in his therapy sessions, a lot of us use ABA type methods with Jaymes already. Hand-over-hand, reinforcers, etc. It works. Example being, I want Jaymes ot eat his sandwich. Everytime he takes a bite, I give him a potato chip. If he doesn't take a bite, I eat a chip instead. Eventually he "gets it" and eats the sandwich in order to get some more chips. Ok, maybe not quite ABA, but it works.

I can see where a lot of the Autism Acceptance folks are coming from when they say that they feel ABA is reducing kids with autism to robotic, trained drones or comparing the sessions to dog training sessions. I can understand why they feel that doing hand-over-hand or forcing eye contact would be intrusive and uncomfortable, and not respectful of the patient.

One particular commenter had an excellent point... He or she said something along the lines of "the real patient in an ABA session is not the child, but the parent, who is bothered by the child's unusual behavior."

It's a good point. If Jaymes could talk enough to choose whether to go to therapy (Not ABA mind you, speech/OT/PT) I'm sure he'd say something like:

"I'll go if I have to but here are the rules:

  1. No touching me
  2. I don't have to sit in the chair
  3. No flashcards
  4. No books
  5. I will play with the train and prefer not to be bothered with asking for more track or having to say "Mine" or "more"
  6. No hand over hand
  7. No eye contact unless I decide to
  8. When I'm done with something, I'm done. No cleaning it up or finishing a task.
I'd really prefer not to go at all though, why don't we go lie on the floor and stare under the door of the room where the janitor keeps the equipment?"

I think mother and child are both the patient in any therapy situation. I want Jaymes to talk, and Jaymes wants to be able to communicate his needs and wants to me. I want Jaymes to not melt down and scream and hurt himself. Jaymes wants to play and enjoy life. he can't always control his reactions and emotions and it's up to us to help him learn to do so.

In Jaymes' therapy, we don't really worry about stimming, as long as the stim doesn't interfere with whatever he is doing. My thoughts on the stimming are that Jaymes needs to do it to calm down and relax, and who am I to tell him he can't? I bite my nails, he flicks his blanket back and forth in front of his face. I chew on my thumb knuckle, Jaymes makes "steeples" of his fingers and watches the fingers from one hand interlace with those of the other hand. Sometimes Jaymes spins, sometimes I bounce my foot up and down. Stimming doesn't really bother me in public, I care less about someone I'll probably never see again thinking Jaymes is acting weird, and more about letting Jaymes wiggle his hands in front of his face to balance out the stress being at Walmart is causing him. We'll never BE normal, so why dwell on it?

I don't know where I stand. I think the Neurodiversity movement's "all brains are wired differently and autistic brains aren't broken, they're different" is an awesome way of thinking. I agree. Jaymes isn't broken, he's just not like me or you or Sierra. However, I do not think that this means we should stop any therapies and just let him be who he wants to be. I don't want to sit by and NOT help him learn to talk, to dress himself, to play. I think that by just ignoring the things that he obviously needs help with, I would be condemning him to adulthood in an institution.

It's our job as parents of any kids, autistic or neurotypical, to give them the skills to function in the community. I guess it's a balancing act, accepting your child for who he is vs. wanting to make sure he can go out in public without hurting himself or someone else.

I think respect is important, both respect for Jaymes and respect for everyone around Jaymes. I respect Jaymes' right to think strawberries taste like crap. Even though in OT he's working on eating a more varied diet, I don't think we should force him to eat EVERYTHING we put in front of him. I think mushrooms are foul, he thinks strawberries are foul. A lot of times I think we forget that our kids ARE people, with their own unique set of likes and dislikes. If in therapy, Jaymes just licks the strawberry, then grimaces and refuses any more... well, he tasted it, and he hated it. That's his prerogative. All I expect is for him to try.

On the same token, however, certain behaviors have to be handled, regardless of respecting Jaymes' feelings. I don't care if he thinks it's fun to lock his baby sister in a room and giggle while she cries. His disability is not allowed to cause suffering to his sister. Autism or not, Jaymes has to have boundaries. I won't accept that part of him, the part that takes great amusement in other people's suffering.

I guess that it's all a matter of perspective. Autism acceptance is bound to mean something different to everyone. To me, it means helping Jaymes reach his potential without imposing unfair or unattainable expectations on him. I don't expect him to write his name by the time he hits kindergarten, but I do expect him to be able to say his name by then. (He doesn't yet, but he will, I know he can.) I don't expect him to eat every bite of food put in front of him, I don't expect him to sit at the table silent and still. I understand that sometimes he needs to be allowed to lie on the floor between bites and do his own thing. Irt keps him calm enough to come back up, sit in his seat, and eat with his fork.. So it's fine by me.

I will never be one of the parents who seek to extinguish any "bizarre" or "abnormal" behavior in an effort to make their child "normal." I don't care if people think Jaymes is weird or freakish or gross when he's grunting loudly, or waving his hands in the "touchdown" position, or wearing a pink girly blanket everywhere he deos. Screw them, if they've really got their heads that far up their rear ends. I don't want Jaymes to be perfect, normal, just part of the crowd. I want him to be him, and if arm waving and funny noises are who he is, then so be it.

That's my personal brand of autism acceptance: take it or leave it.

Saturday, March 7, 2009

A really disturbing article

Read the article first...

I'm not entirely sure on the background of this article, but it seems to be from back in 1965, and is about Dr. Lovaas and some of his methods. I found both the article and photos extremely disturbing, but the photos in particular made me sick to my stomach. I know that the whole Lovaas Method has changed since then, but boy... What a depressing, stomach turning read.

What do you think?

Friday, March 6, 2009

Jaymes Vs. Big Pharma. This title dedicated to Age of Autism

5 Year old with Autism takes on big Pharma!

Ok, maybe not. But really,

Jaymes- 6
Clonidine Patch- 0

I love how Jaymes is on the patch, but unfortunately, I cannot keep the patch on Jaymes. He used up the first month's worth of patches in a week and a half, and I spoke to the psychiatrist's office and explained the situation. They called in another script, and the pharmacy did an admirable job overriding Medicaid's "Oh hell no, you already got your drugs for the month you drug seeking drug seeker". We decided to try the patch with an IV adhesive clear sticky patch over it.

It lasted one night and upon arriving home from school, was gone, gone gone. Put another on this afternoon, and tried another approach.

I took the patch in one hand, ready to stick on, and a random adhesive sticky in the other. At the same time, I stuck them both in different places, hoping he'd only realize he had the one big foam sticky on there and wouldn't notice the little teeny patch.

No luck. Immediately the foam sticky was torn off, with crazed giggling, and shoved brutally into the garbage can where he frantically buried it over and over so I could not retrieve it. Then, the moment my back was turned, off came the patch.

That boy. He's too smart for our own good. His patch free day was apparent, he was in that super-giggly-crazed-manic mode. Running around, blindly plowing into walls and doorways and mowing down his sister or the dogs. Laughing like mad at nothing I could really see. Occasional random bursts of crying and screaming, tossing himself on the floor.

You can tell when he's off the meds. I'm not pleased. I finally find the right med, the right delivery method.. And he won't flippin' wear it! How is that fair? YEARS of trial and error with the meds, there has got to be some way to make this work.

We need Jaymes on the patch. We love Jaymes on the patch. Jaymes is happier on the patch. Sierra doesn't get tormented. No crying fits. He sleeps. He cooperates.

This just royally sucks.

But he's still awesome, and I still love the snugglies out of him.


Get it? Twitter idiot= twitty-ot. You're supposed to laugh at my wit.

Ok, fine. Anyway, I finally joined after seeing that every other blogger I follow is doing it. Yes, I'd probably jump off a bridge if they were doing that too. You would too.

Soooo... How do I make friends? I could only find one person, and only because she has a little linky thing on her blog. I know Kelley and a few others are on there, how do I find them? I don't know anyone's email addresses!

What do I do exactly? Is this just a perpetual Facebook status update type thing? How can I not fail at Twitterdom? Help!

Oh and you can add me, pleassseeeee and save me the effort of finding you all! My email on there is amber @ dontbitethedog . net

I'm "dontbitethedog" I think?


Don't worry, I'm not going to do it ( :

Read away, loyal minions!

Thursday, March 5, 2009

I must just LIVE in LaLa Land

Because, well, I'm just THAT oblivious.

Last night Jaymes had a therapy session, and I brought the report I posted here yesterday to ask the therapist if she reallllly thought Jaymes was a bad as the evaluation report made it seem. She was at the evaluation, but for a very short time and I doubt she was involved in the parts that I felt most concerned about, but she's very honest and straightforward and I figured I'd get a decent answer from her.

I've found that any health professional you ask certain questions to will squirm and avoid answering the questions, and it's frustrated me for a long time. This was the first time I actually got a decent answer to the Two Big Questions (yes, they get an official title because I have asked them so many times and never gotten a satisfactory answer from anyone.). Namely, "How severe is he now" and "Will he ever really be normal". The second one is an idiotic question, and yet I'm always compelled to ask. I don't know what I'm expecting, honestly. Even I know the answer to that one.

Anyway, having shown the report to the therapist, she agreed that most of it was pretty accurate. She did say that it all depended on how he was acting, his mood and frustration level at the time of testing (which while relevant, is probably a nice way of making me not feel SO bad, because maybe he was just having a bad day that day) because those things can effect his testing.

Having gotten this far without much, if any, sugarcoating I asked question number of of the Two Big Questions. As expected there was a certain amount of "How do I answer this question without freaking Amber out" leading up to the inevitable.. But to her credit, she's the FIRST person in 5 years of my asking to actually answer! I cannot tell you how nice it is to finally ask the question and not leave the office fuming about once again not getting an answer. Where was this therapist when I first asked years ago and the pediatrician told me "Oh, we're not allowed to speculate on that" or the OT in Florida who told me "Well he's really too young to be able to say" or the psychiatrist back in Florida who said "There's no real way to measure that, don't worry about it." Oh I could go on and on and on. It's not like I really -wanted- to hear the truth, but I needed to and someone finally sucked it up and just told me. Therapists like that are the ones you respect the most.

Now like I said, I sort of wish I didn't ask, because really I wanted someone to tell me the truth, but I didn't really want to know the answer. I know, makes no sense, but that's the only way I can think to explain it. I have always looked at Jaymes, compared him to others I saw or met or read about in blogs, and kinda guessed that he was moderate in severity at worst. Her wording was something to the effect of "Well, he's pretty severe."

Why didn't I know this? Ok, maybe I did and didn't want to admit it. I don't know. No one ever expresses concern over Jaymes, it's always just business as usual at therapy and the doctors. The only times Jaymes is treated differently is at a store, where we get funny looks or at a friend's house when he starts acting out. Nobody looks sideways at Jaymes at therapy, because he is just like everyone else there. In that waiting room, there is a different crowd of parents. Not the prissy soccer moms who act shocked if your child starts screaming and flailing on the ground... No, we've got the parents who will pick someone else's kid up and calm them down. Everyone knows every kid there by name, everyone's friendly and pleasant. Too bad everyone wasn't like this. It's such a relief to be somewhere I'm not being judged, my child isn't being judged, where we can sit and chat and if one of the kids has a moment, or drools on the furniture, or does something else weird, no one says anything. It's all normal there.

Jaymes therapist had a lot of good points, particularly about not getting depressed over this new information. I'm trying not to be, I know it won't help Jaymes any. I guess it's just really a shock to see it on paper, in black and white, undeniable.

I worry about Jaymes... What happens to him if something happens to me? Images from that article about Trudy Steuernagel and her son Sky pop into my head, and it scares the hell out of me. Imagining Jaymes all alone, scared, without the one person who has always been there. He isn't attached to anyone like he is to me, but I won't live forever. I don't want to think about him being by himself someplace strange with no one who cares whether his blanket is on the right way or who cuts his sandwiches into cool shapes or who knows to let him turn the bedroom light on and off instead of doing it for him.

And then of course I get started thinking about us here at home. I know the therapists think we're godawful parents. Maybe we are. No one taught me what to do when Jaymes was born, very few people stepped forward to help me. Jason was one of those very few, but it seems that as jaymes ages, they get along less and less. Jaymes makes messes, Jason hates messes. Jason yells, Jaymes runs to me. Jason doesn't understand him. I'm too lenient. I let him get away with too much. But you know, sometimes I'm just too tired. I don't always have it in me to put him back in time-out 96 times. I don't always have the energy, emotionally, to deal with certain behaviors. So yes, sometimes I really do just sit here and hide on the internet while Jaymes rips apart the house... Because I AM TIRED. I want to be that perfect autism mommy, and in writing, i can play the game. I can do the research thing, I can maintain the website and blog because those things are relaxing for me. Dealing with tantrums and behaviors that not only are a problem for Jaymes and I, but which will get me in big trouble with Jason too... Not relaxing. Exhausting. I KNOW it's my job and I need to do it. Most of the time I do. But sometimes I can't, and I just sit here and punch keys and hide from it. I do the same thing when Jason and I fight. I have friends and readers and a life here online, and it's a great escape. Maybe too great, because I'm here too much.

Therapist was right about a lot of things, and she has this way of telling a person to get their shit together in a realllllly sweet, non-offensive way. Kinda impressive if you think about it, takes talent to be able to tell people things they don't want to hear in such a way that they leave with a good feeling and not a "she thinks I'm a crappy mom" feeling.

I do need to get out of the funk I've been in and lay down the law with Jaymes. I need to do it even if Jason gets mad at me for it, even if he tells me I'm being stupid or not doing it right. I need to stick to computer time before the kids wake up (like right now), during naps, or after they go to bed.

Anyway, I guess I need to stop ranting at this point. The reality is this: It's autism, it's here, get used to it. Don't deny it, don't whine about it, just do it.

Wednesday, March 4, 2009

Evaluation results and one oblivious mommy

Back in October, Jaymes had an evaluation by the Augmentative Communication people at his therapy place, because I thought a speech device might help him communicate more effectively and alleviate some of his frustration. It was a really long thing, with a lot of different people. His OT was there, and then the person who did Jaymes original speech eval when we first moved to NC, though I'm not entirely sure what her title there is. We also had a psychologist (psychiatrist? I can't remember and am too lazy to look) and Jaymes developmental pediatrician too. They did a lot of question asking, tried out some speech devices with Jaymes, and did another one of the Vineland test thingies. I cannot count how many of those I have filled out in the last 4 years!

Anyway, I got the evaluation results back today in the mail, and some of it really shocked me. I guess I was not as negative about things as I thought, because I did not expect to see "scores" like the ones Jaymes got. I almost want to think they messed up and it's not right, it just seems so... Low.

On the plus side, there was some humor to be found in the report to balance out my "Holy hell, he's -that- bad" reaction. I'm guessing they use a predone evaluation and then just edit it and add in names and specifics to save time, which would explain why Jaymes was frequently referred to as "Jayme" and "she" or "her". One sentence made me laugh out loud, said something along the lines of "he very rarely points of objects in a book, as they are named for her, but she will spontaneously respond to her favorite items."

I'm not making fun of the people who did this report, lord knows I typo often enough and I thought it was an extremely well done, in depth look at Jaymes from an outsider's view which I appreciated immensely... But you have to admit, it IS kinda funny. Maybe I'm just immature. Probably.

Anyway... I'm going to type the whole friggin thing out because I want to use it on the website as an example. I'm just going to take out names and things (although you all already know Jaymes--er J's name). Bear with me, this'll take awhile. Luckily, Jaymes is at school, Sierra has his trains to play with (normally he won't let her touch them), and I have a cup of hot cranberry apple tea. Yummm.

Here we go... Typos corrected because I'm anal like that. My thoughts in red.

"Pediatric Outpatient Therapy Program Augmentative Communication and Assistive Learning Clinc...

Evaluation findings: (psychologist)

J is brought in here today by his mother, who reports that he has made progress in the area of speech/language, he continues to need help with expressive language development. As recently as a year ago, J only screamed to communicate. Since that time, he has begun to babble expressively, identify colors, label animals, and name letters of the alphabet. If he knows the word for the item he wants he will say the word to request the item (examples include "snack" "fruit snack" "cracker" "pizza" "drink" "popsicle" "outside"). Parents have been encouraging him to say "I want" when making requests, and he will often comply with their prompts. J echoes what others say. His mother reports that often the sentences he generates do not make sense.

Presently, J is enrolled in a special needs PreK at C. Elementary. He receives speech therapy at school with K.M. He receives additional therapies at the ... Pediatric Therapy Program including speech/language treatment with S, occupational therapy with R, and physical therapy with A. His last psych evaluation was in December 2007 with the school system.

J lives with his mother, stepfather, and 2 year old sister in the family's home in ... His father works in mental health and his mother cares for the family and maintains an educational blog about raising a child with autism. (Amber in: Yay, my blog got a mention!) J's medical needs are covered by ... He is on the waiting list for CAP-Medwaiver program. The family has a computer in the home. Windows Vista is the operating system. (Amber in: I'm not sure why that mattered, and BTW have i ever mentioned my hatred for Windows Vista? XP for the win.)

Behavioral Observations (team)

J is a neatly groomed boy with a relatively large head (Amber in: This cracked me up so much I had to share it with Jason. I don't know why but the wording just killed me. Still does. Don't mind me, I'll keep typing while choking on cranberry apple tea) dark hair, and distinctive eyes. He exhibited some distress in the transition from the waiting room to the evaluation office as evidenced by agitated vocalizations and facial expressions. He jabbered expressively once in the office, moving quickly to pursue items of interest. He clung to a blanket which his mother reports functions as "his off switch". (Amber in: Kinda weird to be quoted on such an offhand comment. maybe I should choose my words more carefully.)

Health/Medical Evaluation: (Dr. Developmental Pediatrician (who Amber thinks is just awesome but who Jaymes never gets to see anymore))

J was seen in my office for developmental pediatrics consultation on 9/4/08. The report from that visit was reviewed and the mother provided updated clinical information for this assessment. The total contact time was 15 minutes- all counseling and coordination of care.

J was diagnosed with autism by 2 years of age. There is no known etiology for his development disorder despite previous neurological and genetic assessment. He was exposed to maternal Paxil during gestation. No family history of autism spectrum disorders. J has been managed for clincial seizures in the past although several EEG's and a 24 hour video EEG were normal. The most recent MRI brian scan (march 2008) revealed subtle findings of left mesial temporal sclerosis. Treated with several anticonvulsant medications from 2 years of age until weaning from Depakote this past summer. No change in behaviors as noted by mother.

Primary care by Dr. General Pediatrician at ... Pediatrics in ... Several sets of tympanostomy tubes in the past and an adenoidectomy. Tubes are still in place. Previous audiologic assessments have been difficult to interpret. however there are no concerns about functional hearing status at the present time. The mother has no concerns about functional vision responses. A previous allergy/immunology assessment documented mild IgG deficiency with normal IgM and IgA. Chronic diarrhea has been investigated with lab work and upper and lower endoscopy.

J has a long and significant history of disruptive behaviors- starting as a toddler- that have interfered with home life and specialized treatment services. Specifically, frequent outbursts with rage behaviors and destructiveness/aggressiveness/self-injurious behavior. Disordered sleep as well. Risperdal started at very large doses at 3 yo but now given only on a PRN basis. A brief Prozac trial earlier this year resulted in an exascerbation of target behaviors. After the office visit with me one month ago, trials of Adderal XR and Ritalin LA resulted in rebound irritability and an exascerbation of daytime behaviors/adverse sleep effects, respectively.

The medical treatment plan is to start scheduled treatment with Risperdal at age and size appropriate doses- starting at .125mg daily, then up to .125 BID after one week. The possible adjunctive use of Clonidine was discussed with the mother who is reluctant at this point. (Amber in: This is reallly outdated med info, so ignore it. Hard to keep it up to date with how often it changes!)

Psychological evaluation (psychologist)

J was last evaluated through his school placement in December 2007. Mother reports today that J has made nice progress since that evaluation, having begun talking, learned most of his letters (upper and lowercase), his colors, his animals. Formal psychological assessment was not attempted today due to J's trouble sitting still and tolerating other-control of items of interest. Please see adaptive behavior scores which follow for an estimate of his current levels of functioning.

Adaptive Behavior Assessment (psychologist)

J's adaptive skills were assessed using the Vineland Adaptive Behavior Scales-II (V ABS). The Vineland- II describes a child's performance of day to day activities necessary to care for one's self and to get along with others. Adaptive behavior as measured by these scales describes what the child does, rather than what the child is capable of doing. It consists of domains, each describing a particular area of development. J's mother was the informant for this examiner.

Vineland Adaptive Behavior Scares-II- Interview Edition

(Amber in: I don't know how to do tables on Blogger, so I'm just going to write out each domain, score, age equivalent, and adaptive level. Bear in mind while reading these that Jaymes is 5 years and 3 months old)

Communication: (Standard score 52, J's score 22)

  • Receptive: Score: 6. Age equivalent: 1 year, 1 month
  • Expressive: Score: 6. Age Equivalent: 1 year 4 months
  • Written: Score: 10. Age Equivalent: 2 years 5 months

Daily Living Skills: (standard score 53, J's score 23)

  • Personal (self care): Score: 7. Age Equivalent:1 year 4 months
  • Domestic (taking care of one's own things): Score: 10. Age Equivalent: 1 year 10 months
  • Community (skills needed to live in the community): score 6. Age Equivalent: Less than one month (WTF?)

Socialization: (standard score 51, J's score 19, assuming I added correctly)

  • Interpersonal relationships(How he relates to others): Score: 5. Age Equivalent: 2 months
  • Play and leisure time(assesses play and use of leisure time): Score: 6. Age Equivalent: 6 months
  • Coping skills (adapting to social situations and social customs): Score: 8. Age Equivalent: 10 months

Motor Skills: (standard score 59, J's score 16)

(Amber in: I was actually really surprised he got such low scores here, especially in gross motor.)

Gross: Score:8. Age Equivalent:1 year 7 months
Fine: Score:8. Age Equivalent: 2 years 3 months

Everything except written communication and domestic daily living skills scored in the " low" level. Those 2 scored in "Below average" which confuses me anyway because he can't write and he destroys most everything he touches! Go figure.

Now, take the above with a grain of salt, as I'm not sure I interpreted it correctly.

Next page...

"J's overall communication skills fell in the low range. Receptively, J sometimes turns his eyes and head toward environmental sounds and the sound of his parent's voice. He demonstrates clear understanding of the word no but only seems to sometimes understand the word yes. J reportedly does not like books and will not attend to a story for any length of time. He very rarely points to objects in a book as they are named for him., though he will spontaneously point to his favorite items. He sometimes listens and follows simple one step directions. He does not yet follow 2 step directions. (Amber in: He does now, sort of.) Expressively, J is described by his mother as "newly echolalic" (Amber in: I KNOW I didn't say it in those words, that makes me sound waaaaaay smarter than I probably sounded that day.) J produces short phrases. he calls everyone (Only men and not anymore) daddy and Si-si (sister's name) but does not state his own name when asked. When presented with a choice of 2 items, he takes both rather than choosing the item he wants by pointing. He waves "bye" to his mother at night, but does not wave to others as they come and go throughout the day. He asks questions by changing the inflections of the words or simple phrases ("I eat?" "go bye-bye?" "Go outside?")

Speech/language Evaluation: (speech evaluation lady who does NOT typo!)

J presented today with his mother to explore speech generating devices to aide in his overall communication skills. J is communicating mainly with gestures and some rote phrasing. J's mother reports that he will lead his family to the desired object or independently get the object of desire. Jaymes currently has 5-1o single words which are used mainly in rote phrasing. Echolalia was heard throughout the evaluation and was noted by mother. Minimal use of spontaneous utterances is reported to include "I'm sorry". J verbalized during the session, however many of his words were self directed or in imitation of his mother or therapists. according to his mother, J is becoming more frustrated during communication exchanges and can be aggressive and overly emotional when not understood.

Initially, during today's evaluation, a static voice output device, specifically the Tech Talk 8, was used. This device was offered during child directed activities and activities that J's mother reported were motivating to J. J did not appear overly interested in this type of augmentative device and his interest in computers and led the therapist to explore more dynamic display speech generating devices. He was able to use the dynamic display device to sequence a three symbol utterance to request "I want __" consistantly across most activities after an initial model was given. Notably, J imitated the computer production of his own self generated utterances. The computer production of a self generated utterance is a strong model for the user. It can be more effective than another person's model since the child is actually formulated the message independently and is imitating the auditory feedback of that formulated message. In some cases, this can promote the use of spontaneous oral language.

J displayed successful use of the dynamic display device in structured activities as well as opportunities to use the device in less structured, more spontaneous activities. Pictures were limited on a screen size accomodating 32 pictures, where only 8-10 pictures were visible. J demonstrated the ability to use a single finger target method with a keyguard. Multiple fingers or whole hand was used on occasion. J's overall attention span was limited and it was necessary to redirect J's focus or remodel the target often using the device within an activity.

Occupational Therapy Evaluation: (J's OT)

J was trialed with a Vanguard. he was able to isolate his fingers to access the icons, but he required a keyguard to enhance the physical boundaries of the icons. He did require initial hand over hand assistance, and he attempted to remove the picture icons. However, after practice he was able to demonstrate an understanding of the cause and effect with the device. He is able to visually scan the board. He is able to cross the midline with both upper extremities.

J presented with a willingness to participate in the trial and to follow directions. He did require redirection at times back to the task. J would attempt to imitate the voice output of the board.
He demonstrated some hyperactivity during the testing. No self stimulation behaviors were noted during this testing session.

J would benefit from an augmentative communication device to enable him to effectively communicate with others in his home, school, and community environments. To access a communication device, J will require a keyguard to improve the physical boundaries of the icons. Also he will need icons he cannot remove. This therapist concurs with the recommendations made by this team.

Team Recommendations:

Based on today's evaluation, J is a strong candidate to use a speech generating communication device. He needs a dynamic display device, voice output device with a keyguard for accuracy. He is able to handle a maximum of 6-10 icons initially on a page to communicate more independently across his environments. There are several devices that J and his treatment team should consider and potentially uitlize loaner programs to familiarize themselves with the options. "

WOW, that took a long, long time to type. Good grief. Anyway, I guess I just didn't realize how low some of his skills were. I mean, I know Sierra is Waaaaaaay ahead of any of his skills.. But it just didn't register.

I still don't know what the docs and therapists think the severity of his autism is, and they won't give me a strsight answer so who knows. Based on the scores I saw, i'd almost hazard to say severe, but I don't want him to be, so I think it's easier to go with moderate. Sounds less... horrible. I dunno.