Thursday, November 29, 2012

'the toothpaste is out of the tube'

Today was the congressional hearing on Autism. First one in YEARS.

The Reps (especially Cummings, Barton, Posey and Maloney) pushed the CDC and IAH and asked hard questions about why we have 36 vaccines before kindegarten when most of the rest of the develeoped world has half that.  And why the US longevity rate is #36 in the whole world, with all the countries above us givin fewer vaccines, and why there's still thimerosol in multiuse vaccines.  In fact, why there are still multiuse vaccines at all.

I'm tremendously proud to be a part of the warrior moms who pestered their legislators to attend. Multiple members of congress made point to say how their constituents CARED about this issue enough to educate them.  And in fact seemed more educated than the CDC.

Mark Blaxill was incredible.  You can read his testimony here:

Finally, the hard questions are getting answered.  I know tomorrow big pharma will spin it, and the media will ignore it, but I do not think that there is any putting this toothpaste back in the tube.....

Wednesday, November 28, 2012

belated catching up post...

Wow, I'm behind. Sorry about that. 

Lets see - Thanksgiving week went swimmingly.  Dominic's doing great, continuing to make steady small steps.  The latest little things are.

~ He's loved the move Cars for years.  A year or so ago, we got CARS 2 from Netflix and he melted into tears/ refused to watch it. (it was DIFFERENT).   So we didn't buy it.  Over Thanksgiving, we got free movie channels from DirectTV and DVR'd it just to see what would happen.  He LOVED it.  It has replaced Scooby Doo for the favorite du Jour. He is sleeping with his cars again. 

~Yesterday, we had our power upgraded in the house which meant no power until about 6pm.  He was distraught when he got home that we wouldn't turn on the TV for him, BUT - I was able to show him that the lights didn't work either and he stopped the tantrum.  he GOT IT!

~~~~~

We met with Dominic's new SPED teacher today.  We like her - she's ABA trained and very child focused (read: not budget focused).  We talked about what we'd like to see on his next IEP (somehow we're due for it in January, wow) and some of those things include:
- More opportunities for independent peer to peer conversation/socialization
- Maybe changing the reading program to a whole word program (the one he's using is going SO SLOW that this might be better)
- working on apraxia (articulation), working on reducing scripted responses
- forcing more functional speech to get needs met (eg, things like raising his hand and asking for a bathroom pass)
- working on life skill stuff (things like learning what an exit sign is/means; memorizing his phone number)
- coming up with creative ways to make numbers meaningful (we think he;'s bored silly with "hand me number 6" kind of things)
- Creative ways to have him doing more one on one stuff w/peers - maybe pairing him off in a  lunch club kind of thing w/an older kid, or having other kids read to him.  encouraging relationships.

We also talked about how difficult fine motor, particularly writing, is for him.  We agreed that we aren't quite to the point yet, but are very close, to stopping handwriting and moving him 100% (with the exception of his name) to a flat screen keyboard (ipad).  she had some suggestions around theraputty play to warm up his hands before working on handwriting at home and will also send me some ipad app's for us to load.    I expect that we will change his IEP to allow all work to be done on a keyboard very soon.

We talked about next year - she is a military wife and therefore not 100% sure if she'll be here next year but is encouraging us to push for an ABBLS and Autism trained SPED for him (the intermediate one currently at Audobon is not) and to leave him with the younger group of SPED kids. Apparently things change a lot when you move to intermediate SPED (who knew).  So we will wordsmith next years IEP to strongly encourage those features of a SPED teacher and I'll get out my advocacy hat starting spring breakish. there is no reason the school cannot send one of their teachers to the autism lab and get them up and running on the ABBLS. Its a district resource and therefore not an expense.
 ~~~~~

 We are currently in the middle of parasite protocol #4 (of 12).  We are seeing worms coming out.  Better out than in!  We'll see what the gains from this one are as 1, 2, and 3 all were significant.

Tuesday, November 13, 2012

Keepin it Dry!

So, ya'll remember the soda can cut / stitches debacle of late July? The one where Dominic had to bathe with his hand in a baggie and finally "got" the concept of keeping it dry?

Tonight, he scratched his ankle (not even bleeding), and insisted on a bandaid before we could proceed with his mms enema (don't worry, the logic failed me too).  I got him the bandaid, gave him his enema, and put him in the tub. It took me a minute for me to realize he was trying to keep said bandaid dry.  He took the whole bath like this:







also tonight we had a first... I ran his bath, and he looked at me and said Want Jamas.  And then he independently went downstairs (buck naked, mind you), got his pajamas and came back upstairs.  Up to this point its taken multiple verbal cues for him to go get them, so to just say he needed them and go get them was pretty huge.

scribbling

So… for years Dominic has had serious fine motor problems and frankly just had no desire to color or do other pre-writing activities. School has been working hard on this, but he still hasn’t shown much interest in coloring at home (or if we go out to eat, coloring on the kids menu).

This weekend, we started noticing random papers were scribbled on throughout the house.

Don’t know what it means, but I’m hoping that it means we’re opening that neural connection again and starting back up where we left of.

I hope this doesn’t extend to the walls.

Monday, November 5, 2012

alrighty then

So tonight we transitioned Dominic from using a bath puffy thingy to bathe with to a washcloth. Only because the bath puff string broke and I forgot to buy another one.  So he got a washcloth.   I helped him with his hair, lathered up the cloth, and left him to bathe.

15 Minutes later, this is what I saw:


No idea what prompted the head covering, but he wanted to wear it to bed and was not happy when I wrung it out and hung it to dry.