updates, good day...

So, today was day 10 on the new supplement, enhansa. We started at 1/4 the dose we're going to end up with, and tomorrow we'll go up another 1/4. the only interesting things we noticed as far as die off reaction were that on days 1 and 2 he had a LOT of head sweating at night (go detox!) and minor head sweating days 3 and 4. On days 2, 3, and 4, he was very hyper and didn't want to go to sleep.

Today, his teacher told me he had a really good day, and was able to sit and be very focused with the classroom OT. She said that she'd definately noticed more focus and less wild running about since we started.

His ST this evening said he gave her the most speech she's ever heard. The OT concurred, and said he did well in that session too. All good stuff.

tidbits

- dominic is now swimming unassisted. I'm still suiting up, but really, he's fine by himself. and the lifeguards who've watching him learn to swim are also fine.

- we had the ESY (extended school year) meeting this afternoon and Dominic will be getting 7.5 hrs a week this summer (90min/day) of one on one time with a woman who apparently has a background in doing therapy for kids with autism diagnoses - she does private therapy as well as being a substitute teacher for D11 and doing this summer stuff. We'll get to meet her in the next few weeks as she'll be coming over with our regular REA to get to know Dominic. We'll work the timing out with her. They've already told her it will need to be morning.

fun stuff...

Bike. And Forts.

We've been talking about getting Dominic a bike for a REALLY long time. I finally found the perfect one for him, on sale at Amazon. It came today, and Rod put it together. they went outside, and spent an hour trying to teach him how to pedal (no dice), and then Rod came in. Dominic brought the bike in himself, and parked it in front of the TV to watch a movie. He wanted it by the table for dinner. and was upset when i didn't let him take it into the tub. Am guessing he likes it.



Here's a better shot of the bike, but he's making a goofy face....



for awhile now, Dominic has enjoyed hanging out under Rod's desk. There're way too many electrical type things down there for this to be terribly safe, so we generally shoo him away pretty quickly. however, i got a cute picture of it the other day:

good little updates...

Small updates, but positive ones.

- Saturday night Rod and I went out to dinner (yay, a child free meal) and a movie, and when he realized we were laeving him with a babysitter he flung himself into Rod's arms crying "don't go". very clear. very appropriate. (and he did okay for the sitter, too)

- This weekend, can't remember when, he got in trouble for throwing Rod's books around, and got his hand smacked. He came running upstairs to me crying. I asked what was wrong, and he managed to get out "daddy... hand". So, actually that is very good.

- Today during the school therapist visit, she asked him a specific question and he CLEARLY shook his head no. HUGE step - one of his goals is to be able to independently - without prompt - communicate yes or no.

appt update

Today we went to see Dr Kucera to review the last of the pile of bloodwork we had done back in late January. Some interesting results, most of them we were already treating for either because they're common results, or one of the other tests found them too.

Of note:
Extremely low Folic acid (already treating)
Extremely low B12 (already treating)
Low B3 (already treating)
Low Magnesium (already treating)
Extremely low Zinc (added a zinc supplement today)
Extremely low Essential Fatty Acids (already treating)
Extremely low protien absorbtion/digestion (already treating)

It was a good appointment. I went over my crazy theory from a few weeks back - and he said it actually makes sense and is not that crazy as an overall concept - that the extra immunities from breastfeeding were helping him keep a virus (btw, he is now testing for lyme, which would fit the profile as well - he thinks the rash on Dominics arm looks like the lyme bullseye - and there is apparently a HUGE lyme-autism link)

We tweaked a few supplements around, added the aforementioned Zinc, Homocysteine Supreme, and this new one I specifically asked about, Enhansa - I've been hearing a lot of buzz about it on the various autism message boards. So we have a month's worth as a sample and if it works well for us, we'll actually buy it. So far the only downside we've heard is that there're signficant viral and yeast die offs during the start and every time you up the dosage. Good in the fact that they're dying, bad in the fact that the die off causes some intestinal and behavioral issues. We'll take the advice of the internet and start low and slow.

Again, this test came back showing absolutely no mercury in his system, which is just weirding the doc out. So the beginning of June we'll do another DMSA provoked urine test to see what kind of mineral levels we see. That'll be interesting.

We will go back and see him again to followup that urine test on June 25.

Oh, and we've learned our lesson. THe wonderful thing about this doctor is that he spends all the time necessary with each patient. That means appointments NEVER start on time. Last time we waiting almost an hour before he came in the little room. He then spent a good amount of time with us, but this time, we brought along a movie and my laptop for Dominic. MUCH easier on Dominic. and us.

Update from our meeting this morning.

This morning was a bit of a zoo. I took the day off work in anticipation. Dominic's regular school REA came over for their regular daily one on one work. Then we got her supervisor, his preschool teacher, the early childhood special ed facilitator and the school districts Autism consultant who comes down from Boulder.

Dominic and his REA stayed upstairs. The rest of us went downstairs.

The original purpose of the get together was because we wanted to hear feedback from and ask questions of the autism consultant. It morphed a little bit into also getting progress reports with data collection sheets to back them up, from his teacher and the REA's supervisor.

It was a very good meeting. Got very good feedback on how he's doing, some specific examples of good things (eg, from his preschool teacher, she said she'd NEVER seen a kid with an autism diagnosis do this (and she's worked with at least 2 autistic kids per year for many years) - he will go do something he know's he's not supposed to, and sneak a look over his shoulder at her to see if she's paying attention). He's apparently using the visual schedule very well both in the classroom and in the special Friday classroom.

They wanted to know what else they could do to support us. I put it back to them and asked what we weren't doing... consensus seemed to be we have all the appropriate irons in the fire. Our biggie from them is socialization for him. And the autism consultant is going to send us some specific materials to help us work on that this summer.

Independent much? Updates from yesterday

Dominic's got a bit of a stubborn streak. (can't imagine where he would've gotten that)

His OT was telling me last night about his favorite thing to do with her - they have a flexible tube he crawls in, and then she drags him in the tube down the hall. he LOVES that kind of sensory pressure and input. She makes him verbally say "Drag, Please" before she'll do it, tho. Yesterday he spent at least 5 minutes trying to figure out how to drag himself down the hall - he got in the tube, and attempted to roll... only succeeding in rolling himself right out of the tube. She did eventually get him to verbally ask, but its funny that he tried so hard to do it himself first.

couple of updates from school - dominic loves toys that vibrate, the fish tank that vibrates, the vibrating pen the teacher has, etc. So i've just bought him a couple of vibrating stuffed animals from ebay. He also has good problem solving skills per his teacher - it was time to put away the tricycle, which apparently he loves (we're looking for either a trike or bike for home...) and first he tried to carry it, but it was too heavy, so he pushed it, but kept having the back wheel hit his leg, so independently he came around to the front and pulled.

time to move the butter.

So i'm working from home this morning and Dominic is downstairs watching Thomas the Train. I hear the pitterpatter of little feet making their way upstairs. Then the fridge opened.... I got up and went to see what he needed... and found him licking buttery fingers. *fanstastic*.

yes butter - with fingerprints on it - has casien in it, so it'll be interesting to see if he gets all foggy today as a result.

yes, i've now moved the butter to the garage, along with my quiche that has cheese in it that he was eyeing. No, he cannot get past the kiddie lock on the door to the garage.

Downs and Ups

Yesterday we got back in the groove of ST and OT after missing a couple of weeks (one due to D11 asking us to start Friday classes earlier than expected and the other due to the child development center closing for a blizzard). We have a new schedule – Dominic WAS going on Friday mornings with Rod, but now that he’s having supplemental services through D11, we’ve had to change that to Thursday afternoons with me. Yesterday he had school followed by therapy. Because of the schedule change, we had a new speech therapist, who said she barely got anything out of him (new person, etc), and the OT mentioned that she could definitely tell it’d been awhile since she’d seen him. Dominic kept falling off the therapy ball (which he sits on for her for all fine motor therapy stuff) and had a hard time asking for the swing – he went and got all the parts but she has a rule that he MUST either say please or swing before she’ll set it up, and he had a hard time remembering to do that. We got home and he literally put his head down on the table and fell asleep during dinner. So I hosed him off and put him to bed at 6:30.

Today, his D11 therapist told Rod that Dominic is starting to meet some of the first goals they had for him (example, using 2 words strung together – “need that”), and they’re going to be moving on to the next goals. We’re both of the opinion that we don’t’ see much of that, but if they do, fantastic. She’s backed him down to 45min sessions because he wasn’t staying focus’d so well for an whole hour. She’s planning on working back up to an hour. Which will be good, because the summertime stuff at Alpine will also be one on one intensity, and he’ll have to tolerate it for 3 hour increments. We’re encouraged at the results, and are hoping it means we’re working in the right direction.

And a nice surprise… I had submitted to insurance copies of invoices for all those out of pocket tests we had to pay for in Jan/Feb and we’re actually going to get a nice chunk of change back – maybe about 50% of what we paid. Frankly, I’m surprised, I didn’t actually think they’d do anything, so I’m kind of glad I took the time to submit everything.

Its Autism Awareness month

And there’re PILES of articles all over the various news sources about Autism and causes and treatments, and most of them all say that autism has no known single cause, but its probably a combination of genetics and environment (ha, what else would it be?), and that the only proven therapy is applied behavioral analysis (ABA) and that said therapy is both inordinately expensive and generally not covered by insurance.

So, what can you do this month – pick an Autism Charity and donate money or time to it. There’re a slew out there, from the political action types (Autism Speaks) to the research types (Autism Research Institute) to the treatment facilities that operate in the red - and the best example of this I can give is Alpine Autism Center, where Dominic will be going this summer. They are a 501,C,3 so your donation is tax deductible*. They are also always in need of toys, both indoor and out.




*they accept directed donations towards kids tuition as well, but when pushed, told me that the giver would need to double check with their tax professional on how much of the donation would remain fully deductible.. However, they have told me that you can make a donation and send a letter asking for it to go towards Dominic’s Tuition, and it will (if you do this, we are extremely grateful to you, and only ask you let us know so we make sure that it shows up properly on his account)

Couple of quick updates..

1. My crazy theory is still crazy, but the rash on Dominic’s arm is actually ringworm (a fungus). His preschool teacher took one look at it yesterday and identified it. Its contagious, but our instructions from the doc’s office (over the phone) are that he doesn’t need to be seen, and to use an over the counter anti fungal. We’re guessing he picked it up at Villa, either in the kids area or the pool, as it showed up right after a weekend where he’d been in both area’s. not a big deal, easy to treat.

2. I dropped off the application forms and deposit to Alpine yesterday, and so we’re now confirmed as starting on June 1. We still have to return a physical, but since we’re seeing the doc on April 15 anyway, that’s not a huge deal.

3. This whole snowing in April thing is old already and its only April 2. We had 2 snow storms move through yesterday and another is scheduled for this weekend.

4. D11 early childhood special ed coordinator called me this morning. Apparently she’s been talking about Dominic with the D11 program coordinator and autism specialist for kindergarten and up (which coincidentally is housed at the same elementary school Dominic is going to right now), and said specialist - this lady: http://colotraining.com/rcullain.htm would like to observe Dominic in the classroom (scheduled for 4-9) and then come talk with us (scheduled for 4-14). Okay - sure. We’ll let anyone look at him who might have good insight for us.