Thursday, March 29, 2012

1 in 54 boys....

Well, they’re out.


Released with more of a whimper than a bang, but still released.  Please remember, these are the numbers of 8 year olds with an Autism Diagnosis in 2008, from select populations in the US.   These are already 4 years out of date.

I have been watching facebook and the blogosphere reactions all day.  And frankly, I’m just worn out.   It seems like all the major news outlets are spinning this with the “better diagnosis” treatment and saying that really there’s nothing to worry about.   Where the blogs are passionate and even the National autism Association is calling for the CDC to declare an epidemic.  Not sure how the CDC can do that since they’re pushing the autism is genetic wagon, and we all know that there’s no such thing as a genetic epidemic.
 
And I’m tired. I’m tired of the rollercoaster we’re on with Dominic.  We just had his monthly parent meeting at Alpine. It went fine, but I’m still tired of it.  His verbals are down a bit from last month, but sentences are up.  Behaviors overall are down, but he’s scripting more instead of playing spontaneously now and they want to nip that in the bud.  We’re going to do the vitamin A protocol this weekend so I warned them to expect dry skin and said I’d send in chapstick.  They have to check the rules to see if that’s allowed without a doctors note (RIDICULOUS).  It just piles up.  And I’m tired.

So, while the rest of the world gears up for Autism Awareness day and month and plans to light everything BLUE, I’ll be plugging away at the day to day grind, because I don’t have the energy to make anyone anymore aware than you already are.   I saw this on facebook, and I really like it. 

Please, if you are a friend of mine do not wear blue for me on April 2nd 'World Autism Awareness Day' for Autism Speaks 'Light it Up Blue' campaign. Do not donate to Autism Speaks at TJ Maxx or Marshalls. They aren't funding the research we so desperately need. They don't speak for me. I am not celebrating Autism this month. You'd have to have been in a coma for the last 10 years not be very aware of Autism at this point. The Awareness campaign is about not actually doing anything. Want to help kids like Dominic? Call your legislators and demand real research and real answers as to why 1 out of every 88 children (2008) will develop Autism.

From the TACA Now Blog:  
“A recent survey of the TACA membership demonstrates that families spend on average over $29,000 out of pocket annually for each child with autism.  Some of our TACA families are spending over $100,000 through debt accumulation to help their child. That is a $100,000 that they do not have to help their child.  This help comes in variety of forms therapy, schooling, medical intervention and more.  All in an effort to provide a child with a chance to lead a “normal” life. Families living with autism are struggling for their basic needs, only to be met with impossible hurdles, funding cuts, and endless waiting lists

Monday, March 26, 2012

Thats a grin...


He was Very Happy to be having popcorn for a snack. So he pulled up his chair and stood on it to watch the corn popping.

Thursday, March 15, 2012

Dominic Tidbits from this week.


Dominic’s latest regular trick when he see’s one of us laying on the sofa under a blanket is to jump under it with us, pull it to his chin, say “Good Night”, and then fake a snore. Its ADORABLE and hilarious. 

Last week after I posted that things had been much better, on Thursday Dominic had an AWFUL day at Alpine.  I got there for pick up and he was in the middle of a non compliance episode.  His therapist was behind him doing hand over hand and his lead teacher was working with him directly.  There was lots of tears and flailing. He calmed down and finished his work. And then got his snack.  It was the worst he’d had all week.   I realized that they were “working for snack” which makes me twitchy anyway, and I made the point that when I get HUNGRY, I’m cranky and easily pushed to tears too.  So perhaps it was the late snack.  They kind of shrugged off that suggestion and when I got home I checked his lunchbox – he’d not eaten the majority of it.  (normally the para tells us when he doesn’t eat his lunch at D11, and we have him finish it in the car.  They didn’t tell us this particular time).   So I let Alpine know, and now they have instructions to give him and early / additional snack should he seem hungry or cranky.

This week has thusfar been phenomenal at Alpine.  High verbals all around. Monday there were a couple of behaviors, but Tuesday and Wednesday both had zero behaviors. No non compliance, no self injurious behaviors’s, nothing.  Both days I got there and therapist said he was FANTASTIC.  Which I like to hear.  He did have a second snack there yesterday, because he told his therapist he was hungry.  Which is just fine.   Yesterday he also apparently had a silly day, and they gave me two examples.  He was playing with Mr Potato Head, and he stuck the feet into the eyes.  When his therapist told him it didn’t go there, he told her it did in Toy Story. (and it did, go figure).  The other one was he raced his therapist back to their area, sat in HER chair, picked up HER pen and started pretending to take notes on his file.  Laughing maniacally.   So really good days.  Hopefully I don’t jinx the rest of the week by posting, but I’m thinking we may be over the behavioral hurdles from the Nrf2 and the high excitory neurotransmitters. 

We’ve had beautiful weather here this week, and so Dominic’s been spending lots of time outside.  Actually, so have I, and its funny, because as soon as I go outside to do whatever in the garden, he promptly puts the dog on the leash, and grabs his shoes and comes running after me to get me to tie them.

We continue to trial Gluten and Dairy every couple of days and are still seeing NO reactions.  I don’t quite know how to behave, but I think it means I don’t have to buy more of the SUPER expensive GFCF chicken fingers that he likes…  I still plan to make sure no one feeds him anything we didn’t provide.  But I think I can loosen up  on things as we run out of the GFCF versions of them, and feed Dominic the regular versions every so often.  We still don’t have our new oven (it may come tomorrow, Best Buy is supposed to get it in stock today), so we are getting  VERY tired of  our cooking options. But we did end up with a top of the line toaster oven about 2 weeks ago.  Mostly because I wanted to make garlic bread, and wanted to make more than 2 pieces of it at a time.   And this thing makes REALLY perfect toast, too.

Thursday, March 8, 2012

Catching up...

Been crazy busy, so apologies for lack o' blogging the last couple of weeks. 

We started Dominic on the new supplements (the new B complex, and the Nrf2)  from Dr Kucera on Feb 25.  That whole week was AWFUL.  Dominic went into ragey non compliance episodes ever day at Alpine, sometimes mulitple times.  Those episodes all involved mulitple self injurious behaviors (SIB's), mostly biting himself (on the arm, generally) as well as lots of lashing out to his therapists (biting, hitting, spitting, etc).  Very out of character for Dominic and distressing for all parties involved

We had a meeting that Thursday with Donna of Unique Healing to touch base and mentioned the ragey-ness.  I had already started GABA (an inhibitory neurotransmitter), and she suggested significantly increasing the amount (from 1 capsule to 8 per day). So Friday I went through Dominic's supplements and pulled out the B Complex and Nrf+, and added the high amount of GABA.  Saturday we had a cranial-sacral adjustment, and his frontal plates was out of alignment which can also make a person ragey.  so fixed that.

This week has been MUCH better.  No ragey non compliance episodes at Alpine.  The SIB's have now become only biting his shirt (a huge step up from biting himself).  Alpine took a field trip yesterday up to the Denver Aquarium, and Dominic had a BLAST, and had zero behaviors so that's also a good thing.

What I think we'll do is leave the supplements alone for another week, and then try adding back just the B Complex.  Probably at night so that he could sleep through any weird reactions (its all bio available forms of B so shouldn't make him hyper).  If it still makes him ragey, then we'll be done with it and try to find a different form of B Complex that does not increase behaviors.  Also in March, I think we'll try the high Vitamin A protocol again since that was so successful last spring.   I'm not sure I care about adding the Nrf2 back in, but eventually we'd try if only to use the 1 bottle that we bought.