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. 

Another Thing to Obsess About

So, my husband is a stay at home dad, and sometimes I get things through the "man" filter. The man filter is busy paying attention to getting kids dressed, fed, and picked up from school and doesn't always catch those buzz words people say to him in meetings. The man filter sometimes misunderstands things the special ed teacher says, and the man filter doesn't remember every single detail so his Google-obsessed wife can go look them all up. 

He's not as obsessed about details and devouring special ed books, but he's a loving dad and the kids are cared for and clean plus they have a roof over their heads from my job. It's a compromise. Anyway, when the hubby told me last month that they wanted to test Princess for Asperger Syndrome, I had him recall the conversation he had to the best of his ability, and it sounded like they'd said they wanted to "evaluate her more" and he'd suggested AS, and they'd just responded with "... or something."  

I'd taken it to mean they wanted to find out if she had other LDs, they wanted to see if she were maybe ADHD (something I've suspected)... or something. 

Well, no, they're evaluating her for AS.  I'm really not sure how to feel about it.  Should I get indignant and insist that this isn't her problem? I don't think it is, but then again, exactly which subset of typically developing seven year olds am I comparing her against? I'm not a child development expert. How do I know what impaired social skills are? I swear she knows how to read emotions, makes eye contact, communicates her emotions clearly, and has imaginative play out the wazoo, but then...  there are the doubts.  

Cakes

King has been very interested in his toddler board books with labeled items. Specifically the food book. That's been a big hit. He loves to have us name all the foods for him, and I catch him naming the food for himself (but he'll insist you do it for him if you catch him.)

Today, everything is about cakes. King took out one of his puzzles with a big cake, and greeted me this morning to inform me "Cake!" "Cake!" "Cake!" He also pointed out his Curious George books where George was eating something cake-like. Pancakes and chocolates as the case may be, but we'll go with cake. And then he pointed to and correctly labeled George.

Yay for talking. I'm thinking we need to make a nice dairy free cake to celebrate.

I'm also thinking we should make him a few word books to keep the whole talking ball rolling.

More studies

Just got the paperwork for yet another study for the boy. It's not like the kid is a cornucopia of study cash, for anyone wondering. This is worth a massive $25 gift card per visit for two visits. However, it will further science.

They're doing a blood test to see if he has increased oxytocin and/or G-protein levels. He does amazingly well with blood draws, so I'm ok with that part. The only thing that might disqualify him from the study is his milk allergy, so we'll see on that.

They had an initial study with other kids that found increased levels, and they're tying to replicate their initial findings. I find this ironic, considering recent buzz about whether or not oxytocin could be a treatment for autism. If this study's findings are correct? That'd be a big no, but I'm sure it wouldn't stop anyone from declaring it to be this year's secretin.

It's also ironic that if he qualifies for the study, they'll have to test him for autism and give him a few IQ tests. We just paid them $350 last year to do all that, and now they'll be paying us.

Studying - Or Not

King is on the border for qualifying for a study for kids using AAC devices. They want to see if the devices get kids to talk faster than those not using them. But they want kids with less than a 20 word spoken vocabulary. 

Initially they said we didn't qualify because I said he knows more than 20 words. But then later I clarified that he knows more than 20 words but doesn't functionally use them. He labels objects and things, he counts, and he'll say words after the fact but won't use the word to get the desired result. 

They decided that this would, in fact, qualify him. 

Since that conversation in the Fall, I'm pretty sure he's passed that threshold. I'm not sure what his current rate of language use is, but he regularly functionally uses words like, water, juice, more, please, cracker, again, up, go/let's go, etc. 

However, I'm pretty sure he doesn't actually do so more than 20 times per day. 

Well, we'll see. It's an observation only study, so we won't be able to get extra intervention services through it, but it would mean a little more money toward the swing set fund. Plus, you know, forwarding research and actual science. That beats feeding kids antifungal creams any day of the week. 

Sleep, or lack thereof

King is actually a pretty good sleeper, as far as it goes. He's usually asleep all night, and while it takes him a while to get there, he's out like a rock when he does. But last night he fell asleep around 6 pm on the couch, and my husband made the mistake of thinking he was extra tired and down for the count.

He was out until 2:40 am, according to my watch. And then nothing in the world would settle him. The boy was calling for us to open things, talking to himself, loudly vocal stimming, running around, and generally making our sleep less feasible. I asked him if he wanted to cuddle, and I got a loud "Noooooooo!" Um, yay that he answered a yes/no question, at least.

Next time he falls asleep at 6 pm, we're waking him up.

Everyone Loves Toys

King is doing well lately. I think part of it is organization, part of it is time, and part of it was the Christmas break which let me work with him more. He's taking more and using his words more functionally. He learned and used cracker, apple, banana, orange - and kept using them over and over. We had to put the kibosh on more than two bananas per day.

We also took all the toys scattered all over the house and organized them into clear bins. The old open toy shelf type thing wasn't working. Not only were the kids not using it and leaving toys everywhere, they'd also end up just piling toys into big, assorted messes in the bins. The floor wasn't that clean with all the toys preventing good sweeping, and the whole thing just made me feel tired and disorganized every time I looked at it.

So the new system with bins means each activity has a home, and each activity can be cleaned up after it's done. This has not only prompted better communication - legos, Play-doh, draw, blocks, but it's a visual gestural way to indicate exactly the activity you want to do. King can grab one of the bins, say "Open!" and then clean up afterward. He starts singing the clean up song, puts the toys back, closes the bin, and puts it where it belongs. This is huge!

Not only has he started using more language around this, he's been more functional overall. I think it helps all of us to have some more organization in our lives.

I will tell you the paint bin has been slightly problematic, though. I liked the idea of the paint bin. We have washable paints and an easel on which to use them. Problem is that it's become a preferred activity, and there's only so many head to toe cleanings we can do for a boy during the day. For now we've put the paint bin behind the gate, but maybe we'll figure out a way to limit the painting without all the meltdowns.

Moved.

So I moved the blog. I really wasn't talking about speech delays anymore, was I? It's all autism all the time, baybee.