Seeing the Good in the Meltdown

So yesterday was a bit of an up and down day. King's been ill, and I think he's still a bit cranky. We had some kettle corn earlier in the day, which he loved, and he kept asking for more "pop." 

The last time around, he comes over and asks, clear as day, for "more popcorn." I would have loved to have rewarded him, but we'd all just finished the bag. I told him we were all out of popcorn. Instant meltdown. 

I suppose I could be bummed, but I'm not. Not only did he ask clearly for something, he understood me when I told him we were out. He wasn't sad because he wasn't communicating. He was sad because we didn't have any popcorn. 

That's big progress. 

BTW, he had a bowl of Cheerios later on, and that turned out to be a just fine substitute snack for him. 

Allergy tests...

I asked a friend of mine who is an ND about those allergy tests I keep hearing other moms talk about. They always end up with really weird results like, cheese but not milk or chicken, celery, apples, and rice. Inevitably they end up having to prepare every single dish at home and do this whole rotating food thing and get an already picky eater to accept an even more restricted diet. 

There would have to be a whole slew of very concrete results for me to accept such a thing. 

Anyway, from what I've read, there isn't any sort of large double blind, peer reviewed study that backs the finding of these tests. There is some sort of reaction for some people when you mix their blood and certain food items, but they don't have proof that this actually indicates an allergy. I mean, some people have different colors of eyes but that doesn't have a thing to do with how well you see. 

Anyway, I asked my friend, and he confirmed that. No studies. They don't actually know. They're just guessing that this indicates an allergy. He says this just gives them a direction to go and really they should pay attention to their children and how they react. 

Compare and contrast that with the parents. They seem to think a blood test is all scientific like and wow isn't it awesome that they get instant results without having to do all that guesswork and elimination diets to find hidden allergies! 

Next time I see him, I'll ask him about the food sources. I get that they can test against pure casseins, but how do they test against chicken? Do they raise the chickens in a lab? What if the allergy is to the feed, not the animal? Or celery - how do they remove possible outside  contaminates?  Just too many questions. Plus, if it really was this easy, why doesn't the average pediatrician offer allergy testing as part of their standard services? 

B-I-N-G-O

So King was singing something in the car and making some interesting pointy hand gestures. I figured out he was singing B-I-N-G-O. It makes perfect sense that that would be an instant hit with him. It involves letters. 

At home I drew out BINGO for him, and he sang it for me. He got really into the clapping part and stomped his feet to the rythm in excitement. Clap-Clap EnGo! Clap-Clap EnGo! 

It was the most adorable thing, ever. 

Today we're selling the boy to science again. They're coming in for a third attempt at finishing the assesment they haven't been able to get all the way through and they're going to video our interactions for the study.  

I'm thinking the longer it takes them to finish up deciding he's qualified, the less likely he'll qualify. Which is a pity, since I'd love for him to fit into their data as a kid that spontaneously starts talking without the extra intervention.  ;-P

They're here. 

Yes and No

A big sign of progress with the boy is that we're finally getting some yes and no answers out of him. This is huge.  We used to have to play a lot of guessing games at what he wanted. Now he's starting to use actual words to tell us, and he's letting us know when we guess right or wrong. Yay! 

He doesn't do it consistently, and sometimes it's more that he melts down or shoves things away for no, but it's starting to happen. Seriously, if I had to pick only two words he could say and consistently use, these would be the two. 

 

A Decade of Torture

Ok, so last Thursday I went to this presentation, against my better judgement.  

It was just as bad as I thought it would be. And in many ways it was worse. 

They started out with a mom getting up to speak about her experiences with "natural healing" and autism. She talked about how she avoided most pharmaceuticals, and yes, she pronounced the word with derisive italics. She started out by showing a picture of her kid at age two, miserable.  Sensory overload, not having a good time of life, cranky kid.  

She then started treating her for yeast, put her on a casein/gluten free diet, gave her every trendy supplement under the sun including B6 injections. She had alternating diarrhea and constipation, so she got treatments for each extreme. She got chelated for a year. At one point they had her scoped to check for H pylori from some supposed specialist they had to fly to, even though this is something they can check for locally (and much less invasively I might add). And on and on.  

She got a bit teary eyed as she admitted that her now 12 year old was still not "recovered" but don't give up hope! Her 12 year old was not going to sleepovers and making lots of friends, but she was smiling, talking and obsessing about airplanes, probably, as she put it "because she's been on so many of them to see all these specialists." As proof, she presented a picture of her 12 year old smiling. 

The whole thing just pissed me off. What I saw was probably different than what the rest of the audience saw, but what I saw was that this woman had tortured her daughter for ten years with invasive and unnecessary medical procedures. That poor girl. And I'm willing to bet any benefits she thinks she got out of it were just from the passage of time. I'm sure I could find a whole gallery of autistic, miserable 2 year olds that smiled and talked at the age of 12.

And yet, here she was, totally enthusiastic about how awesome naturopathic medicine was. This wasn't an evil woman, and I know she thought she was doing things for the best interest of her child. She clearly spent a lot of money trying to "fix" her, but she's never going to get the results she thinks she wants this way. 

Ok, and I'm not necessarily anti naturopathic medicine. In fact, I have good friends who are naturopaths. I just think you have to really step back and evaluate whether or not you're doing something that even makes sense, or you're going to end up riding the crazy wagon and torturing your kid instead of enjoying them. 

DSM updates

Until I had a kid with autism, the APA was just a way to format my papers in grad school. Now it's that crazy place where they publish the DSM, which is what those handy dandy doctors pull out to diagnose our kids. 

Anyway, here's some discussion for the next manual.  

#3 and  5

3) How to address Pervasive Developmental Disorders – Not Otherwise Specified (PDD-NOS). The individuals currently diagnosed with PDD-NOS may still be described in DSM-V, but the work group will discuss whether they can redefine ASD in such a way that the PDD-NOS diagnosis isn’t necessary, as this diagnosis currently captures a very heterogeneous group of individuals.

5) Whether Asperger’s disorder is the same as “high-functioning autism”;

See, right now, if you have the teensiest tiniest bit of a speech delay, you cannot have Asperger's. You are shuffled either into PDD-NOS or autism, depending on who sees you and whether or not you beg for different classification in order to be eligible to receive services.  Or you get diagnosed with AS anyway by someone who disagrees with the DSM criteria. So much for standards. 

#4 about whether or not it is a lifelong diagnosis is a beeeg can of worms. On one hand, I do believe it's possible to adapt to the point that you no longer meet the criteria for a diagnosis, on the other hand, if they put that possibility out there, there are a lot of desperate parents out there who will swear by golly that *their* kid will be one of the ones who "recovers," pass the vinegar chelators! Ugh.