Apparently, we are members....

of the Autism Underground

Good week...

Bullet points because i am tired.

- Dominic has a runny nose. I have the full on head cold / sinus pain / sore throat. He's fine aside from clear snot. Good news is he's figured out how to actually blow his nose again. (He'd lost that particular talent for a while)

- We're done w/chelation until probably the end of September. The nutritionist I email with forwarded the email to the doc who said stop entirely until we sort out whats going on in his gut. So now we get to do another stool sample. Oh The Fun. Fortunately this one is just a one day test, the last one we did was a three day test. The probable cause for the huge increase in behavior issues and difficulty in focusing is that yeast went way out of whack. I don't know what the probable answer is - it could be a stronger antifungal, it could be a more strict diet (as if what we are doing wasn't strict enough...)

- The spitting behavior is almost entirely gone w/just being ignored. It was an attention getting mechanism. So gross as it is, we are really focusing on not reacting. The squealing is significantly reducing, as well, so that was probably a chelation related behavior, because we're still handling it the same way.

- Dominic is doing really well with his various therapists - and we're noticing more following instructions on the first try, paying attention, emulating, and asking for things than we were a few weeks ago.

- Dominic is still wanting stories, which is fantastic. We're now doing 2-3 each night before bed, and yesterday he wanted a book at Alpine, so they used a story for a reinforcer (in other words, he had to finish the required task, and then they read the story. He picked out a CARS book. No shock there).

- I accidently forgot to undo autoship for the disney movie club, and we got the movie Beverly Hills Chihuahua. Oddly enough, this has become his favorite movie of the week. I say oddly, because its the only one he likes this much thats not animated. He calls it the Dogs movie. its cute.

- No big plans for the weekend.

good day...

Got to Alpine to pick Dominic up today, and as he was coming out, one of the therapists (they have 2 therapists per day work w/a kiddo, in 90min sections each. she had him first, another had him second) says "Hey your Kiddo did GREAT today". *score*

And the spit thing - decreases greatly when entirely ignored. its probably an attention getting behavior.

Parent meeting at Alpine today

We had our second monthly parent meeting at Alpine today. It went pretty well. Dominic is making good progress on his programs, and they are adding a couple of more - colors and shapes, I believe.

We talked with them about our vision for what we'd like long term - school district in the morning (we just got his new school placement - its maybe 5 minutes away, not too bad), from 8-10:45. Come home, have lunch, and then Alpine in the afternoon from 12:30-3:30. Through May. Then starting in June, if we can wrestle the funding, we'd like to do Alpine full day for the summer. If Kindegarten in 2010 is full day, we'll transfer to that w/an Alpine therapist there with him, if its half day, and he still needs it, we'll do half days at Alpine again. All presuming funding.... still no word on insurance coverage.

Dominic's behaviors are escalating - this whole spit bubble thing is driving us all wonky. Alpine is taking a week of ignoring it entirely - attempting to narrow down if this is an attention getting self stimulatory behavior OR an auto-reinforcing self stimulatory behavior. With ignoring, if its the first, the instances should drop drastically, and if its the second, they'll go up drastically. When we narrow down which one it is, we will be able to put a more effective plan in place to handle it. The other behavior thats making us crazy is the constant, never ended, high pitched squealing. He didn't used to do this. Its so. annoying.

----

Tonight, Dominic started getting whiney and melted down right at bedtime. What was interesting was that I got him all tucked in, read him his favorite Nemo story (Just keep swimming...) and he started to cry again.... like he wanted something. I finally got that he was saying STORY, STORY, so I told him to get what he wanted. He very methodically selected Olivia from the bookshelf, I read it to him, and he went RIGHT to sleep. So, very cool that he asked for a second book, picked it out himself and stayed focus'd for the entire thing.

Alpine and D-11, and Chelation, oh my.

Not a lot of changes going on, but figured I'd put an update out.

Dominic's still having behavior issues w/the chelation, so after 5 doses, we've decided to stop for a couple of weeks and get it settled back down, then will resume. Very slowly. His focus has slipped back almost as bad as it was in Feb before we started anything, and thats really frustrating, tho apparently not uncommon.

We've let both Alpine and the school district know that Dominic will be staying at Alpine at least through May '10. We'll probably try to manage to keep him there through August, actually, to get the structure over the summer. Really just depends on how he's doing. The supervisor and early childhood office director asked for permission to go observe him at Alpine, so that they could ensure coordination of care, or something to that effect. I am allowing it because I want to make sure that nothing the school does negates the work that Alpine, and we, have done. For example, his IEP references sensory breaks when he's overwhelmed. So, a sensory activity he loves is the water table. If he gets all fidgity and doesn't follow isntructions, they let him go play in the water. This means they're essentially reinforcing his bad behavior. we'll be requesting that sensory breaks only be used if he a. verbally asks for one (he's been doing that at Alpine), or b. to reinforce good behavior. He will more than likely not be in the same preschool classroom as he was last year due to staffing issues, and the fact that due to Alpine, he'll need to be in a morning class instead of an evening class.

on babysitters....

We don't go out much.... after a babysitter, dinner, and a movie, a night out is $100 a pop. WE try really hard to do it once a month, but we didn't go at all in June. Last night we went out - saw Harry Potter, had a nice sushi dinner. Our babysitter has watched Dominic off and on for a number of years, so she knew him preregression and now post. In Feb, she was the one that told us it was a different kid a month into the GFCF diet.

So, last night, he actually played with her - and he picked out the Foot Book for her to read to him, and she was very impressed with the improvements in comparison to where he was in Feb.

We see him every day, and while we think he's getting better, its always nice to have independent reinforcement.

We're 3 doses into chelation, he's definately high energy. We'll see if the stomach thing continues with any predictablity. Chelation is reputed to stir up yeast issues.

this and that

We got the June report from Alpine yesterday, and its got all kind of stuff tracked in a pretty form, with tables and charts to boot. Appeals to my analytical side. And backs up what we're saying that he's doing so well there.

Today there wasn't school, they're doing an in service, which turned out to be a good thing becuase he's got a bit of a stomach bug - so at least we didn't have to miss a day.

Please keep asking how we're doing this. Frankly, I have no idea. We just are. And yes, theres a lot of stress. I caught this article today and it could've come out of my own mouth. Go read it. Its worth it.

And thats an interesting article on VAccines/ Autism

Go read it:

http://www.ageofautism.com/2009/07/an-overview-of-the-fourteen-vaccine-studies.html#more


This paragraph is pertinent to us:

• Only 1 study used children from the US exclusively .
This study found 20% of the children with Autism they looked at did indeed regress into Autism in this order: MMR-GI Disturbance-Autism, but concludes because the other 80% did so in a different order such as GI Disturbance-MMR-Autism, the MMR isn’t a problem. It also replicated the findings of Dr. Wakefield and found MMR vaccine strain Measles Virus RNA in the small intestine of one child with Autism.


Dominic had GI Disturbance-MMR-Autism.....

Rollercoaster, some up some down

One of the things we were warned would happen when we chelated was that Dominic's bad behaviors would flare up. They are. He's definately less focus'ed with his am therapist and at Alpine. He's doing more spit play which is gross, he's doing some hand flapping and toe walking (which we think is also partially a result of peer imitiation since he's never really done that before). They're worst from about 7-30 hours after the chelation dose. Since we're doing the dose roughly every 48 hrs, that doesn't leave a lot of time that he's not having behaviors. We'll see how he does this weekend when we go 72hrs between. Fortunately its only for a month that we're doing this.

On the bright side, his ESY therapist today commented that in the 8 years she's done aba therapy w/autistic kids, she's never had one that played appropriately with toys like Dominic does. Yes, he carries and lines up, but he also drives his trucks, he puts cars inside the semi, etc etc. So he plays appropriately. Right now he and his semi truck are having a fantastic time inside a large cardboard box. So we have imaginative play, too.

first chelation dose is today.

And its been a really frustrating week. He's started acting out by peeing and pooping everywhere but the toilet - not accidents, because he's taking off his pants to do it. The therapist says that this is a control/defiance behavior - we've got such tight control over his therapy, and so much is being asked of him that he is consciously or unconsciously acting out in one of the few ways left to him by peeing or pooping outside or on the carpets inside. Which means that we have to take control back over that, and put him back on a potty training type schedule where we MAKE him go every hour or so.

I'm tired.

We've been in a holding pattern....

But I wanted to update the blog, so here goes...

Dominic's doing good at Alpine. Nothing earth shattering is happening, but we are seeing a lot more frustration on his part because he's trying harder to communicate and we're just not understanding what he wants. Some days it seems like his receptive language (eg, understanding and following in struction) is starting to do better. At MIL's yesterday, she could tell a difference in his behavior from the last time she saw him, which was about 2 weeks ago - he was calmer, listening better, playing more appropriately with his toys, and sat really still for his haircut (I only had to hold his head for a tiny bit of it).

I'm keeping very close track of his supplements, and doing quick updates daily in an excel spreadsheet of specific things (yes, I'm tracking poop, but also sleep, behavior, and skin issues). Nothing remarkable has shown up with the most recent tweaking of supplementation, aside from Milk Thistle constipating him, so we reduced the dose by half. We start him on a chelation round tomorrow, so will log what we see. I've been warned that his behaviors will increase while he chelates, but so far he hasn't followed any of the normal side effects kids have from these supplements, so we'll see.

We're keeping our heads above water, barely, and are really grateful to those of you who've made contributions towards his therapy, every little bit helps so much. We've now got a best case scenario, a couple of in the middle back up plans, and a worst case scenario for making sure he can get therapy from Alpine as long as he needs it. Best case is of course, insurance kicks in. Worst case is we empty retirement funds and take the tax hit. Everything seems to hinge on what insurance will do, and we have submitted June's invoice, but it hasn't appeared on the insurance webpage yet - I expect it'll appear in the next week or so. Then they have 30 days to make a decision.

Sunglasses and party blowers oh my

One of Dominic's classmates at Alpine had a little birthday party yesterday during snack time...

Here're a couple of photos from the fun. The first one has good eye contact thru the sunglasses w/the person holding the camera

up/down day

The past couple of days have been odd. Dominic was completely unfocused yesterday morning for his morning therapy, and we were starting to thing maybe we were having a backslide, but then he had an amazing afternoon session at Alpine - the director came out to tell me that when he first arrived, he was playing on the floor with some cars (a favorite activity) and she called out to him from the door "Hi Dominic". He stopped what he was doing, turned and looked at her - gave great eye contact - and then when to his chair and sat down.

Doesn't seem like much, but when you think about it he:
- was playing appropriately with toys
- HEARD her say hi Dominic, on the first time (he's been having auditory processing issues)
- Responded to his name (first time he's done that for them, but for me at home I can call his name and he'll come running)
- Made good eye contact independently (also huge)
- Knew that he needed to go to his chair to work, and that he would get tickles for doing so.