IEPs IEPs

It was good, it was bad, it was frustrating, and it was mostly good.

Last week was King's IEP meeting. It lasted a lot longer than I think any of us had anticipated and it went better than I'd hoped for bits.

We have a setup where we take the boy to the university for their language school. He gets his speech therapy there, but other services have to come from the school district. Last year we requested that he get evaluated for OT. We got those results this year. Yeah, that's more than a bit out of compliance for a response. And I'm still a bit pissed about it.

But the results say that he does qualify for OT. We knew this. He can't even dress himself for Pete's sake. Anyway, she also said he's very ready to learn and will incorporate what she demonstrates back into the classroom. Yay. This is a really good sign. Also, she's going to take him out for one on one sessions to avoid distractions in the classroom. I think that's brilliant. She also said he's got the skill level of a 24 month old according to her tests. FTR, he's almost four. ;-/

They actually read his autism evaluation and suggestions for the first time. We gave them a copy much earlier. Did I mention my frustration with the school district? Yeah. Anyway, they read the recommendations and asked about getting an autism specialist on his team. Ya think? His preschool director also wants to involve the university to see if he qualifies for any studies (since those usually involve funding and more therapy than we would otherwise receive.) I'm all over that plan.

We went over his strengths - letters and numbers, increasing receptive skills, better focus, etc. Yay. And then the bad part, his weaknesses. I had to admit that his functional communication skills really hadn't improved. He says the words he says more clearly, but he's still not saying that many words to do anything other than label objects. He does have his moments, so here's to hoping that those moments increase.

His preschool director said she'd left an AAC device in the class and given him some opportunity to play with it to see if it would help at all. He used it to ask for a snack, which is good, but then when other kids started playing with it, he started hitting the "no" button repeatedly. Even better.

The end goal is still going to be spoken communication, but if an AAC device bridges the gap, I'm all over that.

I requested cognitive testing if it were possible, but we decided that maybe waiting another year would be better to really get a good picture. I wanted a baseline, but I didn't want a test that relied on his communication ability to see what's going on in his head, and I know that's going to be hard to find.

They also initially had him listed as being dairy free for the treatment of autism. We corrected them that he was dairy free for the treatment of foul smelling farts from hell, but if it improved his behavior, yay for us. They all seemed to think he was much more focused since we'd eliminated dairy from his diet, but it's hard to tell if that's just confirmation bias. The stinky farts are not imaginary, so yay to be rid of those.

Apple, yes, plum, orange

The latest echololia. It took me a bit to realize he was saying "plum" and not "mom." So we'd have these conversations:

K: Apple
Me: You want an apple?
K: Yes. Mom.
Me: Good talking! I'll go get you an apple
K: Orange.

Heh, It took me a bit to realize that they were just a list of words, too. He's got a hand motion that goes with it, like he's packing things. It goes with his absolute love of the letter P and of the Fun With Phonics DVD, from what I can tell. About halfway through, when they pack for the picnic. You'll see what I mean.

And also related to his love of the letter P, he spontaneously picked up Hop on Pop and started reading the words hop and pop. He won't let me open the book. He insists on carrying the book over and trying to prop it up on a computer monitor, where it falls over, but he sounds out the words on it.

I think this may end up being part of a theme at some point. Thanks Wordle.

The Media Is Not Your Friend

Ugh. My Google Reader has a news feed for stories on autism. After reading this one, I'm now totally depressed, since the article is warning me that my son is going to suddenly die from a seizure disorder, get raped, and then drown after committing some other act of self injury.

I think I need to put a positive story filter on my reader or something.

Reminder

Last night was the Halloween-that-can't-be-called-Halloween party at the school. I hate it when fully secularized holidays get the PC treatment. Anyway, we saw the girl's old preschool classmate. He's severely affected. He's nonverbal and isn't using his communication device that well, either. He spent the entire time stimming and looking away from everyone. Princess tried to say hi, but he plainly didn't recognize her. Very frustrating for everyone involved.

Anyway, his parents told me they'd read Jenny's diet, and it was just doing wonders for him. Maybe there is a change, and I just can't see it, but Jenny was certainly not curing him.

Two words with purpose

Woo! The boy caught a conversation we were having with the girl and understood it. We wanted her to go take a bath. He said her name and then bath. Twice. He clearly understood what she was doing, and he managed to articulate the concept. Yay for communication!

No Fragile X

We had the boy tested to rule out Fragile X. They sent the sample to the wrong lab, so we thought we wouldn't get the results. I guess they caught their mistake after all. We got them anyway, and they're negative. So yay.

And in all that naval gazing that I suppose goes on when your son gets a diagnosis for something like autism, my mom and I have mentally diagnosed my brother with Aspergers. He has some quirky speech patterns. He had behavioral problems in school. He was diagnosed with ADHD, which is a classic misdiagnosis for kids on the spectrum. He's always had a love for machinery, mechanical objects, electronics, etc. Does he have it? Eh, it doesn't much matter. He's who he is, and he's able to live without supports. But it does explain a lot.

Autism conference

It was good. I'm glad I went.

Yesterday's keynote speaker has autism himself and wrote tons of books on the subject. He was an amazing presenter and really engaged the audience. I had to catch the bus, or I'd have bought Autism for Dummies and Beyond the Wall for him to autograph. I'll probably buy them from Amazon later, but I'm still digesting 1001 Great Ideas right now.

Today's speakers included a morning panel with the developmental pediatrician who was part of the team that diagnosed my son and two other professionals on the state autism task force. The lunch session was presented by someone who wrote a book on career paths for people with Aspergers. The career info is a little too early yet, and the diagnostic info a bit too late. And when they talked about HCBS waiver services for the state, it was a bit frustrating, since I know those services aren't funded this year. Lunch conversation was really engaging, and I wish we'd had more time to just talk.

The last speakers were two of the three board of director members of ASAN. They did a good job presenting, even though the whole conference was running late from lunch, and they had some very valid points, but they also ran into the problem of coming off as a little adversarial to parents when describing their anti-cure stance. They were in one breath saying "don't cure us," and in another saying, "we need appropriate treatment." And that's confusing for parents to hear, especially if they confuse the terms "treatment" and "cure."

It's also not evil to wish you could make autism go away for your child. It's a healthy parental wish that you could make your child's life easier, especially if you're watching them get bullied in school. But, as I've said before, it's just not realistic to think that will ever happen.

I think they were just trying to say that parents could spend a year teaching their child to tie their shoes, or they could buy velcro shoes and spend that year teaching them social skills, and we all have to pick our battles and set realistic goals. Most of us would probably agree on that. Unless we're Jenny McCarthy.

I, once again, had to run to go catch the bus, so I missed the closing statements, but I'm fairly sure nobody ended up pulling out a knife. ;-)

A few good points that they brought up in the last panel:

• By the time your kid reaches high school, they should be participating in IEP meetings, not just sitting in them. They need to learn how to self advocate.
• Colleges need social and executive skills classes, not just accommodations for academic issues like quiet rooms for tests.
• People need to think about adults with autism, not just children.
• Give alternate IQ tests that don't focus on verbal communication.
  

I wrote down the name for an IQ test, but I'm lazy and not sitting next to my notes. I'll have to transcribe it before I lose the ability to decipher my handwriting. I'd like to ask them about it at my son's IEP meeting, since IQ monitoring was one of his recommendations.

Magical thinking

I was reading this study, and it went a long way to explain the Jenny McCarthy branch of autism parenting. Basically the theory is that the more out of control your life is, the more likely you are to see patterns when none are there and believe irrational things.

Our brain doesn't like situations that leave us out of control, so we're more likely to jump to conclusions without evidence and engage in ineffective rituals to create order where none exists. When your child is diagnosed with an incurable condition, and this is the sort of thing you see? Oh yeah, you need some magic.

I remember seeing that video before Mr K got his diagnosis, and it scared the bejeezus out of me. I remember thinking how glad I was that all he had was a little speech delay. Um, oops. While there's a lot of truth in the emotions and the feelings those mothers have, I don't think it's the whole story. I still have hope that at the end of this parenting thing, I'll have an adult who manages to make his own way in the world.

At any rate, I've tried my best to substantiate any suggestions before I go off and try some crazy Jenny McCarthy "cure." It's not that I don't think she believes she cured him, it's just that there seems to be a simpler explanation to what he had in the first place.

Reason #1232 why my son is awesome

Giggles.

Teaching a nonverbal kid to read

Mr K is an interesting boy. Although he's not particularly verbal, he is very interested in letters and numbers.

He can count to at least twenty. I'm sure he can count higher, but we haven't tested him on this. He knows all his letters, and he knows the sounds they make. He can even sign them all. If you show him the alphabet, he gets excited and points and labels all the letters for you.

So the next step, as suggested by his preschool teacher, is to get him to read. If he can read and articulate the letter sounds, eventually he can articulate sounds in verbal speech. It's backwards from the way most kids go about it, but you have to play to a kid's strengths.

Measles Over Autism

“Most parents I know will take measles over autism,” said J. B. Handley, co-founder of Generation Rescue, a parent-led organization that contends that autism is a treatable condition caused by vaccines.

- From a NYT article showing a rise in Measles cases, including at least two deaths.

Um, no. Not me. Even assuming for a moment that the MMR vaccine causes autism. It doesn't. There's no credible evidence at all that it does, and the rate of diagnosis has increased even as the rate of vaccination has decreased. But even assuming it were a possibility - I'd rather have a live child with a disability than a dead child I could have saved.

Just like some of the so called "treatments" out there. I'd rather have a live child with a disability than a dead child with a cure.

Things could be worse

That's my mantra lately. My boy's not doing a lot of talking, but he is pointing at things to direct my attention to it. He's also saying a lot of words that aren't expressing immediate needs.

Point at picture of kid swimming on the computer screen. "Fish!"
Point at box labeled for 4T clothing, "T! 4! T! 4!"

Yeah, I'd like it if he were talking, but I feel like we're doing better connecting, and that's progress.

Cure

Went to an interesting talk today from someone with Aspergers. He's old enough to have lived through the bad old days of a "childhood schizophrenia" diagnosis and shock therapy(!). Yeah.

Anyway, he was talking a little about how he was very "anti-cure." I've run into this a lot among adults on the spectrum. I think part of it is his childhood and the particular attempts to cure that were made on him. Um, yeah. I'd be anti that sort of cure, too.

And I think a lot of it is the difference in what people mean when they say, "cure." I say "treatment," because that's what I mean, but I know people who say "cure" and mean the same thing. My goal is to raise an adult capable of taking care of himself, earning wages, and finding happiness.

Even if they found some sort of magic pill tomorrow, chances are that it wouldn't actually eliminate all traces of organic brain difference between my son and typically developing peers. That just isn't realistic.

If there is some sort of "cure," it will likely be in either genetic avoidance or environmental trigger avoidance. Sort of like Down Syndrome or Phenylketonuria. People can choose to avoid having a child with Down Syndrome. (I have my doubts about that 90% statistic and it's applicability in the US) People can avoid the mental retardation associated with PKU through special diet beginning in infancy. Knowing these things hasn't done squat to help adults with either, and it never will.

So basically, a cure would most likely be too late to help any of our kids. And that isn't a death sentence or the end of the world. It just is.

Woo hoo! There was no mention of the dreaded McCarthy, so I did not have to demonstrate my crazy rapid exiting skills. There were snacks of wheat and dairy and parents talking about whipping the school district into shape. Life was good.

Kindergarten No More

I don't talk about my daughter as much as I should. She just graduated kindergarten, yay!

She's still not reading, which in earlier years would not be so much of a big deal. On one hand, I'm super grateful that my daughter gets so many extra services so soon instead of waiting until third grade to see that maybe she needs some help.

On the other hand, it's still not developmentally abnormal for her to not be reading. She recognizes letters and the sounds they make. She just doesn't put them together into words. Someday she'll get that next step, and I have my fingers crossed that she'll someday be a great reader.

Why I Hate Jenny

Tomorrow there's a meeting for the local autism society. I'd like to attend. I hope that they're not all Jenny McCarthy heads, because that would just piss me off. Not that there's anything wrong with hoping you'll find that magical solution. I hope for it, too. I'm just not going to follow after the whackish advice of someone who just a couple years ago was an "indigo mom" with a crystal child.

Jenny McCarthy claims she's cured"recovered" her son and that people now tell her he was misdiagnosed. Uh huh. Which people? Who's verified this cure? There are plenty of people who gain enough skills back to no longer be considered eligible for services, and not all of them think it was a condition caused by vaccination.

She claims that she tried anti-fungals, gluten-free casein free diet, vitamins, and "metal detox." And then she went on to give him ABA (applied behavioral analysis) and speech therapy. Of all of those things, guess what? ABA and speech therapy are the only ones that are known to work. And being the rich chick that she is, I bet she could afford the 25 hours per week of year round intensive therapy that has been shown to make a huge difference.

But if you believe her, it was the first step - the filling her kid with chemicals to remove the imaginary chemicals and bugs step - that did all the work, and the ABA and speech therapy were only effective because of it. Uh huh.

I feel like this is exactly the sort of thing that prevents us from having useful dialog about things that just might work. The developmental pediatrician who examined K said that a lot of kids with autism also had GI issues and that some of them did see improvement with gluten free/casein free diets. She figured it was hard to behave if your stomach hurt all the time and you couldn't articulate it.

I'm sure that some kids with autism really do have particular vitamin deficiencies, particularly if they have a GI issue. But that doesn't mean that everyone should megadose. At best it's ineffective. At worst, dangerous.

Yes. There are kids who have reactions to vaccines. But getting paranoid about it leads to more kids getting diseases and dying from those complications. And getting vocal about it makes the CDC have to get more vocal in the opposite direction. I'm sure the CDC does know that some kids react poorly to shots, such as kids with chicken/egg allergies. Let them do their job and find those high risk groups instead of whipping the public into a frenzy.

And also - could we stop spending so much time arguing about causes and get to the funding of therapy? I'd like my son to have his 25 hours per week, year round early intervention, thanks.

Eval, Eval

I got the formal eval back in the mail for King. His scores were:

Bayley III score: 75. Typical of a 25 month old. He is three and a half. Should be in the 85-115 range.

ADOS
Communication: 6 (cutoff for autism is 4 and above)
Socialization: 12 (cutoff for autism is 7 or above)
Total: 18 (cutoff for autism is 12 or above)

CARS: 37, Range 15-60, cutoff for autism is 30.

Vineland (should be in 85-115 range)
Communiction: 59
Daily Living Skills: 73
Socialization: 63
Motor Skills: 72
Composite: 64

That's not good, but it's not awful. It means that he needs a lot of help, but it also means that he can be helped.

I had to decode a few things for my husband on the report. Like "global developmental delay" and "concerned about his learning" are ways to say "your kid might be MR." It's not unusual for kids with autism, but it's still depressing.

Meanwhile, he's quietly made the leap into two word sentences, which also means he's probably
made it to a 50 word spoken vocabulary. Yay!

One of the reasons I hesitate to brag about his accomplishments, is that sometimes those accomplishments vanish again. Please, please, please don't let this be one of those times. I'd like a little less regression from here on out, thanks.

Autism Pie

Well, we don't have to sit around and wonder anymore, and I can stop telling people, "I suspect autism." The university team agreed with me, and since they have better degrees for that sort of thing, they're not guessing at symptoms based on crap they read on the Internet.
It's autism. Their impression was autism disorder and general developmental delay. The first I expected but didn't want to hear, and the second is making me feel a little punched in the stomach. I suppose you never really want your suspicions confirmed on this sort of thing (unless you're a total whackjob). And really, he's not meeting a lot of milestones at this point, so of course he has a general developmental delay.
I still love my son. He's very mellow. He doesn't (knock on a giant block of wood) have behaviors that are super problematic. He doesn't bang his head on hard things or hit people. He shows affection. He's generally happy. He's pleased when he gets something right, and you can tell from the look on his face that he knows he's done well when he remembers to use his words.
Sadly, "his words" are still single words and sporadic. We've done fairly well showing him signs to go with words, because he doesn't pronounce most words well enough to understand, and the signs really help out. The team would like to see us work more on functional communication, so he can better ask for his needs and wants.
He loves numbers. He can count to at least twenty, although I bet he could go higher. He can sign to twenty. He can recognize the numbers if he just sees random numbers anywhere (Motel 8 ad on TV, F keys on keyboards, Uno deck). I think I might add some more visual prompts to his daily routine to see if we can get him to recognize more words. And I'll see about adding letters. Yeah, I know that letters don't count as "functional communication," but if he's more interested in counting and lists, I want to play to his strengths. I think learning begets learning.

IEP Meeting for the Girl

Princess had her IEP meeting today, and they're increasing services. I always get paranoid that they're going to take them away. They said that actually they'd already increased services and now the IEP was going to officially reflect what they were doing.

They said she's going interesting gaps where she does higher level skills well but misses basic skills completely. Her functional speech is still a big issue. She scored at 47% on receptive speech, which gives her a huge gap between expressive and receptive skills.

She can't identify double digit numbers at all, which puts her math skills behind, but I've heard her add and subtract, so there's that gap in a basic skill again.

She's now getting four 30 minute reading sessions, four 30 minute math sessions, and one hour of speech therapy per week. They're also evaluating her for music therapy, and they said they'd add that on if she qualified. They're also giving her extra cues and prompts and extra time.

She's got good coping skills, and she uses all the resources available, and she's making excellent progress. She just has a ways to go.They're very pleased with her fine motor skills, which used to be a concern in preschool, so yay. That's one of the reasons they wanted to see if she qualifies for music therapy. They figured she was so artsy that it might play to her strengths.

And sometimes Google isn't your friend. After reading this article, I'm even more concerned about dyslexia. She does all of those things. I guess the good news is that because she's receiving services, they're more likely to catch it if it is dyslexia.

Vaccines Don't Cause Autism, ABC!

So I watched the premier of a new show I thought might be good and end up being all pissed off instead. The show, Eli Stone, showed a jury awarding a huge cash payment to the mother of an autistic child over "mercurium" in a flu vaccine. They had a disclaimer at the end, but damage was already don.

Please, people. We don't need anymore damn "vaccines cause autism" scares. It's simply not true. The mercury used as a preservative leaves the body too quickly to do the heavy metal damage you'd see from eating fish or being exposed to environmental toxins. And most vaccines have phased it out due to bad press, anyway.

There are enough people scared of vaccines as it is. I'd rather have my kids avoid exposure to pertussis, TYVM. I've had it. It wasn't a harmless and comically loud cough. It was a struggle to breath with the occasional vomit. Yay.

And then when we get past the stupid vaccines and autism faux link, we find a kid who apparently neatly stacks thousands of toy blocks. His mom must own stock in the wooden toy block factory. Oh, and he never melts down and knocks them over. He just stacks the blocks. I know that if my son likes blocks? I'll buy him thousands of them instead of letting him play with 30-40.

It was just weird.

And the show? Was trying to be funny and really failing.

Eli Stone? You suck.

It's a Date

April 17th. We're getting King's long evaluation done. Note that we first called for an appointment in October. But this? This is the short waiting list. The other hospital that does autism evaluations has a year long wait before they call you to schedule an appointment.

A friend of mine just got punched in the gut with an autism surprise herself. Add this to a long list of parents I know with kids on the spectrum, and it really just makes me ask WTF?