Long time

I've written not one, but two books. I've organized a conference. I've designed websites. I've hired somebody. I've met some amazing people and learned a lot. I've attended an IEP for a little boy who is making some great progress. I've been very very busy and have neglected my blog.

But I do have a confession.  I'm Bonnie Offit.

So, things

Let's see - my boy is still not potty trained. He's willing to change his own pants and is capable of holding it for long periods of time, but he's not quite made the transition to using the toilet. I'm trying to sound optimistic.

Chinese Spam

What is up with that? I turned on comment moderation to catch it on any posts older than three days. I'm not sure why they bother. Comments here are "nofollow" and don't add to their Google juice, but whatever. I may end up turning on comment moderation for everything. What a pain. 

On an unrelated note, books are hard to write and take up a lot of time. Just sayin'.

Toiletries...

Ok, I'm on the home stretch of beyond busy, so I don't have much time to post.

We've been at the potty training for close to a month. Some progress. Some not so progress. We'll have days of almost no accidents and days of completely nothing but accidents, and we've yet to see #2 happen on the toilet. Instead, he'll go 234234324 times in his underwear instead of just doing it all at once.

One thing is very clear. He's traumatized from the ABA visit, and although we needed to do something, I don't think I'd have used this approach if I'd had it all to do over.

We've had visitors over twice for other studies we're involved in. Strangers, and both times, he freaked out, ran to the toilet, sat down without doing anything, and then tried to tell the visitor to go away until they reassured him that they weren't here to potty train him. He still remained agitated for most of the visit.

Frontline Has Balls

Yay for one news outlet that doesn't fall into the trap of false balance. Frontline gave Jenny far more time than she deserved, but still treated her fairly and didn't take her message out of context. They also didn't give in to her demands that they give her equal time and frame her message with her pet DAN! doctors. She's not half the story, and her "experts" don't have equal credibility or knowledge in the area.

She's busy being a whiney baby about it on Huffpo. And apparently at some point they decided to let actual discussion take place instead of turning it into an AoA echo chamber. When did that happen?

On the potty training front, we had success for about a day and a half, and now we're spending time cleaning up a lot of messes. I hope he figures it out soon.

The inmate...

I'm not sure how I feel about this, but the pro technique is apparently to keep the boy in the bathroom all day, and I do mean all day. He's playing there. He's eating there. And he's pooping and peeing on the toilet there. There are jelly beans involved, too.

By the way, nobody sells plastic pants big enough to fit five year olds that I can find. I ordered some expensive but very nice training pants online. Thank you, Imse Vimse.  Everyone else seems to top out at 3T.

Rounded up

I don't have time for a long post, but things went well, even if the boy didn't cooperate. The school is very supportive. There's no sign that they're taking all our services away or pushing him into a special ed classroom all day. I think we'll be ok next year.

Next week: Potty party.

With a quack quack here, and a quack quack there...

Hi, Autism Nostrum.

Dr. Mercola (mercola) is now following your tweets on Twitter.

A little information about Dr. Mercola:

24023 followers 2714 tweets following 21394 people

I feel all special that he chose me as one of his 21,394 followers, and I'm sure he reads every one of those tweets. I suppose I should let him down gently about me voting for @DrRachie for the Shorty. Perhaps I just felt some kinship with Dr Dunlop, since I, too am an overweight non-physician, as he liked to put it.

Also? I have issues with an anti-vaccine nutbar winning a health award of any sort.

 

A week full of milestones

This week, we've got kindergarten roundup. I've been worried sick about it, and local cuts to the school budget have not helped any.

The boy, however, refuses to let such things get him down. He's busy using more words than he's ever used before and trying his best to work sentences into the mix. A lot more echolalia, but I take that as a good sign, too.

He's exceeded the kindergarten math goal of learning to count to 100. He's not reading Shakespeare or anything, but he is reading, and he can both sight read and sound out unique words.

We're taking one of his therapists with us, so he's got a familiar face. If we just shoved him in a room while everyone he knew went in the other room, things would not look good for our hero. It might still end up being me in that room. We'll have to see.  I still have to write a letter.

Dear school district,
this is my small human being who is capable of great things and also has great challenges. Remember all those things you learned about autism in school? Good. Now unlearn about three quarters of them. We want him to be in a regular classroom. We think he'll learn best that way. He needs a full-time para. Yes, we realize that is asking a lot, but once you get to know him, I think you'll understand what his preschool teacher meant when she said, "This kid is going to be underestimated."
Love, me.

Something like that.

And then the week after that? Potty party. Damn, I hope it works. He's ready. He's very ready. My research says there are only two hard and fast signs of potty readiness. Asking for diaper changes and waking up dry. Boy's ready. But if you ask him to use the toilet he resists. Hopefully we can find a reward that works for him, and then once he does it on his own, it will be its own reward.

Always look on the bright side of life, doo-doo, doo-doo

Some excellent posts to read today:

Parenting Is Parenting

And an article on Huffpo that is actually pretty good.

He's "a little ADD"

After all, it's not like it's sometimes hard to distinguish autism and ADHD now is it?

Although children with autism and ADHD may be behave differently, there is evidence that these disorders may be caused, in part, by the same gene.

Gee, how curious. And her son was suffering from a seizure disorder at the time of diagnosis, which brings up the possibility of misdiagnosis.

Hey, he could have had autism and improved to the point that he's subclinical. Such things do happen. He could have had ADHD and a seizure disorder. Or a brain disorder that caused seizures and communication deficits. I notice she's never been particularly specific about who exactly undiagnosed him. Her DAN! doctor? I think she's also far too financially invested in autism to ever admit he was misdiagnosed, if that is the case.

But boy, that autism could come back any second now. Any second. Or, you know, it could still be there and just be less obvious.

BTW - Time has a great article. Note how his parents react at the end.

While I'm temporarily off hiatus

A quick update on things.

I'm one third of the way through my super time-consuming paying project (that has nothing to do with autism.) Phew!

The boy is learning the way of the speech. It's still not always intelligible, but there are sentences, desires, and original opinions coming out of his mouth. Case in point. We went out for some BBQ. The boy loves French fries and asked for some. I told him he'd get some. My plate arrived before his, and I offered him a fry. He looks at me and says, "No. Plate!" as he slid my entire plate over to his spot.

For a snack last night, he asked for a cracker. We got to the crackers, and he pointed at the box of graham crackers and said, "that one." As soon as I pulled it out, he said "peanut butter." I spread peanut butter on it, and he said "sandwich," so I broke it in half and put the two halves together. He happily ate exactly the snack he wanted. And this is now typical, not the exception.

He's making mistakes with pronouns, which are expected. Like he'll say "Help you!" when he means "Help me." Yay, he's using pronouns at all.

He's started occasionally asking for diaper changes. We've got an appointment for an ABA potty party next month. He's also got Kindergarten roundup, and a transitional IEP meeting.

And at the same time, we've had to install better locks on the medicine cabinet. We've had to put shampoo higher and higher to get it out of reach, or he'll smear it on himself and his clothes. We've had problems with seatbelt compliance and have had to move him back to a 5-point carseat instead of a high booster. Having opinions means having tantrums when he doesn't get his way.

All in all, the good is outweighing the bad. I'm very happy with the progress we're seeing, and I hope to see even more.

On the girl front, her medication has been very effective. She doesn't eat lunches, but her academics have improved tremendously with her improved focus. She's also more social and better engaged with her peers. We forgot one day, and all her teachers noticed. We made exactly the right choice for her.

Not Curing Doesn't Mean Not Helping

I was reading a blurb in Newsweek about Ari Ne'eman and how his nomination to serve on the National Council on Disability has a hold on it, presumably because he is against finding autism "cures." I read this comment trying to justify why parents would be upset at his stance:

....we love and accept all the beauty and complexity of our autistic children, and yet we also long to see them achieve at their fullest potential in the world.  We need to work to make the world a more accommodating place for disability; but we also need to help our children perform more independently in this demanding world.

You know what? That's a total misunderstanding of what it means to be against finding a cure. I've met Ari Ne'eman, so I've (hopefully) got some clue about his stance here. Ari was given therapy and supports as a child, and he supports doing that for others. Aversives and restraints, notsomuch. You might say that he longs to "let autistics achieve their fullest potential in the world" and would support helping children "perform more independently in this demanding world. "

Seriously folks, the goals of the neurodiversity movement are not so different than the goals of the average parent. The average parent doesn't want to cure adults comfortable with themselves, and the average ND advocate doesn't want to keep your child from developing and growing.

The difference is that ND folk usually think that "cure" means genetic testing and aborting autistic fetuses.  Parents often think "cure" means finding some super effective treatment for their child, and when they hear someone is against cures, they think they're also against treatment of any sort. That is usually not the case, and it's certainly not the case with Mr Ne'eman.

If we face reality, there is no magic pill or super therapy that will turn an autistic child into a non-autistic child. There is unlikely to ever be such a thing. It would be lovely to have an "easy" button to take what we see as severe hardships and make them go away, but such a thing is a fantasy. What we all really want is to help our kids live up to their best potential and become as self sufficient as possible. That's what disability rights advocates want, too.

Fully Fund IDEA

Squidalicious has a really important point. While I'd love to spend some time calling out the shenanigans of the latest anti-vax tactics, this is more important for the moment. Read her post. If we don't fully fund IDEA, everyone loses. This is something I hope everyone can agree on, no matter your theory on the etiology of autism.

Dear Jenny

Why, why do you tempt me with your stupidity when I'm busy? Go inject your face with bio-toxins to hide the damage from the toxins you chain-smoked and tell me more about how the government is out to poison children. At least the subject of your post wasn't poop, even if the "facts" you cite were. 

 

So Wakefield's Talking

He was discredited or fired by all the jobs he knew and loved, and all just because he was an unethical little liar - or just a bad scientist with lots of conflicts of interest. One of the two, but unethical either way. Boo hoo.

Now he's apparently broken the silence and spoken to the friendly audience over at Age of Woo.

“There has been an extraordinary outpouring of support from the autism community in response to the events of the last two weeks”

Let me just extend to you, on behalf of my corner of the autism community, a heartfelt "fuck you." How's that for support? Take your Piltdown vaccine fears, and let the real scientists do some work. Oh, and thanks a lot for all that herd immunity your fear-mongering cost us. All the kids with cancer who can't get vaccines find that extra special, you bastard.

Meanwhile, he's supposedly got a new gig:

"The most exciting part of it has been the opening up of an entirely new sort of opportunity that will allow me to continue my work on behalf of autism families.”

Um, yeah. That's super exciting. Not. My guess is that his super awesome opportunity is speaking gigs, huffpo posts, and a new book series a la Jenny. That or he decides to open a Geiers castration med franchise. There's some indication he's looking for a PR makeover, so I'm sure Oprah's couch is ready for him to start jumping on it soon.

Talking - yes!

The boy is not only using more words. He's put three of them together in an actual sentence to say his sister was watching TV. Yes!

An Infinite Number of Monkeys at the Keyboard

So the preemptive defense of Wakefield's cheerleading squad is that Big Pharma was out to get him. You know, by making a British medical journal withdraw a paper by someone who committed ethical violations during the creation of said paper. It's a spooky spooky conspiracy.

So anyway,  the absurd defense is that all this happened because Wakefield is "on the brink" of publishing this really fantastic paper, yo. And it will totally show all these doo-doo heads that mercury causes autism, even though most anti vaxxers have backed away from that one.

Anyhoo, lookie lookie. As the awesome Kim Wombles points out, that paper has been withdrawn. Not that it ever was a good paper or ever proved anything, other than proving that Wakefield is still not above conflicts of interest and bad research methodology.

Others have done awesome jobs pointing out the many many flaws in the methods they used. They added monkeys after the fact. They had training issues with the person collecting data. They didn't blind or randomize properly. They tested at different times of the day. They had to mix their own mercury into the vaccine, because the current vaccine doesn't have Hep B in it. They took one study and split it into three parts. And the whole thing had several massive conflicts of interest built in.

My biggest problem with the study is pretty damned simple. Monkeys don't get autism. Neither do mice, rabbits, polar bears, or chipmunks. Before you go arguing that it's only because monkeys don't get vaccines, I'll point out that yes, they do in research. And none of the monkeys in this study got autism, even if you take their results at face value. Just because you can make a monkey have slower reflex development does not mean you've given that monkey autism!

And on the kid front

The girl neither is nor isn't an aspie. The diagnosis is neither given nor ruled out at this time. She's doing well in school. She's also skipping more of her lunch. Her dad is not a worrier. Her mother is. I think I'll buy some whole milk yogurt and serve guacamole more often.

The boy is suddenly talking a lot more, and it's a trend I hope continues.

He's using "more ___ please" sign phrases to ask for things. Sometimes he vocalizes with it. Sometime not. Not sure how the school will feel about this total mishmash of talker and sign language and verbal language thing, but it's what has worked for us so far.

Old MacDonald had a farm, and apparently he keeps it very well stocked with cows. They're moo mooing her, there, and everywhere. And it's awesome to hear.

Got back his test results, too. Last year he scored as approximately 25 months old. This year he scores as approximately 25 months old. Er... In all fairness, I think the test missed skills he actually had just from being in a strange testing environment. Still, I'd hoped for some awesome improvements.

Still busy

Or else I'd be having a field day. Wakefield gets crucified for his saintly ethical violations motivated by profit by the evil evil pharmaceutical industry he'd hoped to employ with that vaccine he patented. It's ok when Wakefield patents a vaccine but not when Offit does it, most likely because Wakefield didn't make millions from his vaccine. Instead he just makes piles of cash by recommending that kids have unnecessary cameras stuck up their ass for the treatment of imaginary measles that don't cause a neurological condition. Poor, poor needlessly persecuted Wakefield. 


I'd also be having fun with politically-correct-but-only-when-it's-a-Democrat Sarah Palin and her call for Rahm Emanuel but not Rush Limbaugh's resignation over use of the same R word she's alleged to have lobbed about herself a time or two in reference to her little campaign prop. What horrible thing in a past life did we do to deserve either her or McCarthy as spokespeople?
  

Attention, Attention

So, it turns out (much to our not surprise), that we're a family full of neurological variation. Took the girl to a neurologist, and she's been diagnosed with ADHD and a reading disability.  We're not at all surprised with the news, since both of these things have been something we've suspected for a while.

We decided that we'd go ahead and give medication a try. Right now we're trying Daytrana. We gave it a weekend trial, and it went as we had hoped. She was the same girl, same personality, just a bit better focused. We don't want a zombie. We don't want an anxious worry wart. We want just a bit more focus in school, and when we've got the reading issues more under control, we'll give it a shot without the meds.

Another bright spot - she didn't have any problems eating, and she went to bed on time.  

Here's to hoping this will work for us.

Good morning 2010

I've got a busy year planned. Hopefully I'll have a chance to keep up with the latest rantings and ravings, but if I don't, there's a good reason for it. I've got a contract in the mail for a project that will eat up most of my time from now until June. So it doesn't mean I've fallen off the planet. It means I'm working on paying projects for a bit.

Things that take money are also underway. We're scheduling a tentative potty party for the boy in February. It's a bit odd to pay $70 an hour to have someone come out and feed him juice and clap when he pees, but we're just stuck at this point. It would really really really be nice if he could not be in diapers in Kindergarten. Really nice. He's never going to be a neurotypical kid, but man, his chances of any sort of positive social interaction in school will be so much better if he doesn't start the year by earning the nickname "Poopypants."