This is the end of Autism Awareness month

I worked really hard to post regularly this month (i know, i didn't hit my one a day goal, but i came really close) to help raise awareness of the things that not only a family with autism goes through but the things going on around us in the blogosphere.  It feels like the train to getting our kids well has actually left the station this month.  There is awareness like I've never seen before.

I'm seeing people without kids posting now on facebook about the dangers of vaccines, and I'm seeing far fewer people spouting back the "CDC says vaccines are safe, so we will be sheeple and get them without questioning" and more people, especially new moms asking the right questions in advance about the safety of multiple vaccines.  People in my parents generation, who really remember how sick measles and mumps made you, who remember the damage of polio and smallpox who had valid reasons for being pro-vaccine (aside from actually trusting the medical industry) are starting to wonder why the schedule of required vaccines has more than tripled in 25 years.  Its not like there's that many new virus's on the planet.

I'm seeing news articles and tv stories teaching the public what its like to have a special needs child.  That the out of control child they may see is not choosing that behavior, but instead has brain chemistry (excitory neurotransmitters) so out of balance that he must constantly engage in self stimulatory behavior, or constantly run, or constantly hum... all of these things are not choices, they are the only way these kids can get their physical needs met.

I'm reading about parents taking back their power.  The Thinking Moms Revolution has begun.  And once this particular pandora's box proving that a generation (or more) of children has been physical (mitochondrially) damaged by an industry that the government has made untouchable, the lid will never go back.

You all get to go back to not having to be aware... but those of us with damaged children do not get that luxury.  This month we've had up days and down days. I've tried to show how that rollercoaster takes us along for the ride in my posts.  You've gotten to see more angst than I normally share - because that is my life.  Some days are horrible, and I come home physically exhausted just wanting to sit on the sofa with a book.  Some are pretty positive.  In general, Dominic is making steady progress with speech and behaviors.  We haven't found the magic bullet yet, but along the way we've found things that help.

We got a glimpse yesterday of what our future could maybe hold - one of Dominic's peers from Alpine who is a few years older than him was over for the playdate we had, and required more supervision than Dominic currently does... from turning every one of the gas burners on the stove on to going for the (adult and pointy) scissors we have stashed on top of the refrigerator.  And constant moving around, with zero interaction with anyone around him.  We hope that we are able to offer appropriate interventions that we don't have that same outcome, but who knows. Its a possibility.

this and that catch up post.

Thursday and Friday, Dominic had fantastic days at Alpine.  Thursday, zero behaviors and super high verbals, and then Friday 1 behavior (but apparently it was superquick), and a repeat of those super high verbals.   Even though in our parent meeting on Thursday they told us that Dominic's behaviors were up across the board, he just had 2 days in a row of nothing

We literally just finished week 3 of the new Speak EFA.   Not getting excited, but, the paperwork that they sent with it specifically has a section in the FAQ that says:
"My child seems more emotional, weepy,agitated.  Is this normal?  Emotional outbursts and transient moods are common when children begin supplementing with omega 3 supplements. Each child is different.  If your child has been very compliant, a change in his behavior may be considered normal.  Parents have reported the "Tasmanian Devil" effect where children become very active, oppositional but in time (2-3 weeks) rebalance"

I had advised Alpine about this when we started, but I'm guessing they forgot.  I didn't realize until I checked the calendar that we were at that magic 3 weeks.  So we'll see how he does next week.

______

I took another pile of supplements over for Dominic's cranial sacral / allergy appointment yesterday to have the dosage calibrated with muscle testing.   Did some interesting rearranging (way more magnesium and b complex and curcumin, plus we added in lysine.  Way less bentonite).  We'll give that a shot for a week, and then we have to do a urine neurotransmitter test in preparation for a Dr K appointment the end of May.

______

We're hosting a playdate this afternoon - we invited ALL the kids and parents from Alpine and so it'll be interesting to see how many / who show up.  In discussions with the other moms at pickup, we all are in the same "complete lack of social life" boat, so we're going to make our own.  We'll see how this goes, but I could see it evolving into a once or twice  a month families get together with a once or twice a month parent night out.   One step at a time.

You know you couldn't get thru April without a Vaccine post from me...

 Ya’ll need to go read this article over at Thinking Moms Revolution. I'll wait. Go read it.

 That flier from the CDC you’re supposed to get providing informed consent prior to Vaccines.  I never got a copy of when Dominic got the shots he got.  It clearly states among the lists of reasons NOT to get the shot is a child being sick,  and mentions that “any disease that affects the immune system” (hello, isn’t that pretty much EVERYTHING from an illness point of view?)  could be a reason not to get the shot. 

If someone had told us when Dominic was a baby that a family history of autoimmune diseases meant vaccines could cause major issues, we would’ve never gotten any.  We thought we were being conservative and safe by delaying 2 years and then going 1 at a time…  I really think had we vaccinated on schedule, Dominic would’ve been much more impacted by the viral brain injury from him MMR.

Yeah, I know we adults were all vaccinated and didn’t have nearly the issues all these kids are having from allergies, asthma, childhood cancers, and autism/add/adhd.  But if you read the whole article over there… you’ll see this nifty chart.  This is the difference in vaccines then and now.  Its actually quite shocking.  But… hey… the pharmaceutical industry’s got nothing to lose, since the US LAW exempts them from lawsuits around vaccines, so they might as well rake in the cash wherever they can. Can we all say CHA-CHING???

BUGGY. And more on after school stuff...

Dominic caught a moth this morning, came tearing out of the office - moth in hand - sorted thru his toy chest w/one hand to find the plastic case w/a toy in it, dumped the toy out, shoved the fluttering moth in, capped it. And called it Buggy. Buggy sat with him at breakfast. He shook buggy up frequently to see him flutter. Buggy was quite dead when I left for work.  When I called Rod later, the container was still there but Buggy had gone missing. We're sort of hoping he flushed him instead of taking him to school. 

~~~

We had our parent meeting with Alpine today.  Verbals are up, but they’re not tracking sentences like I’d wanted them to, so those numbers aren’t valid anymore (they only write down a sentence the first time he says it, so if he says the same thing, like “I want tickles” more than once, it only gets counted once).  I’m not really happy about this, but it’s the best they can do.  Behaviors are up across the board, and they’re working to get those down.  They think its because of different environments having different expectations, and I agree.  If that’s the case, behaviors will level out in a few weeks when we go to 100% Alpine.

Speaking of that, he won’t start full days until June 11 because of Alpine staffing issues.  Which cuts our June bill by about $800.  Which is not a bad thing. Dominic’s 2 favorite therapists have given their notice and are leaving within a week of each other, so we’re all sad.  He’ll be getting new ones, and this is not the first major staffing change he’s had, but its still a major bummer.

~~~

I did find out about another after school possibility for next year.  Zach’s place, which is a local respite center, will pick kids up from elementary schools for $3 per pickup / $15 a week.  And their fee for hourly care is on a sliding scale but it sounds like it’d be in the $7-10/hr range.

So we’re going to go see them on Friday May 5 and Playdate on Monday May 7.  If either of those will work, we will decide which one so we have the transportation thing sorted out by the end of this school year.  We did learn that Zach’s place is the only non profit respite / child care center for special needs kids in the county.  And is 1 of 2 in the state.  The director was very nice, if a bit chatty.    So we’ll see.

Dominic, the Moth Catcher.

“BUGGY, BUGGY, STOP IT”

“WANT BUGGY BUGGY”

So, Dominic  has never loved Miller Moths.  Last year, they scared him. This year, they are subject to intense scrutiny, verbal abuse (“fly away”, “stop it”), catching, and stomping on.  Today, he tried to put one in his pocket as we were leaving school going to Alpine.

The good news is, his verbals at school, where there was an infestation over the weekend, have been super high.  Because he’s yelling at them while trying to catch them. The bad news is his focus has been completely shot while they’ve been residing in his classroom.  Today his teacher caught one and put it in a jar, which calmed him down.  But he really doesn’t like them.

In other news… I did confirm that my boss would let me move to a 6-2 shift in the fall if necessary, AND we heard back from myplaydate.org about their afterschool program. It is the $25/hr respite care, but they know that’s really expensive and want to offer us a partial scholarship.  What that means, we don’t know yet, but we have an appointment to speak with them about the program and details on May 7.   I’ve got an inquiry out to the School to find out if the SPED bus could drop him off in the fall (its outside our cache area, but just barely. I’m guessing they’ll probably say no, but its worth asking.  Myplaydate picks up at schools, apparently. Which is an idea I could get used to).  It would accomplish the hope of getting him some more social skill work but may still be cost prohibitive, we won’t know until we speak with them.

And... I said nothing.

Tonight Dominic and I went to Costco to get a few things we had run out of.  Costco is huge and overstimulating and the carts are big enough for him to still fit in the kids seat. Its the last store that he can do that at, and everywhere else we are able to have him push the cart with minimal concern that he'll elope or otherwise get into mischief.

So I've got a full cart, he's done FABULOUSLY for a  kid who's hungry and tired, and we've just checked out.  An older gentlemen looked at Dominic and said "boy, you're too big for that cart. You should be pushing for your mother".  Dominic paid him no attention, and the man looked at me and said "he ignored me". 

My options were to :

A) Say something along the lines of "he has autism and doesn't speak" which isn't entirely true, he does speak just not really conversationally.  Although we were so proud the other night when we went for a celebratory dinner after his perfect day at Alpine, and he spontaneously pointed at the food and said "GOOD" because he really doesn't spontaneously say anything that isn't need based.   On the other hand, perhaps that could've been a good learning experience, because Dominic doesn't look like he has any sort of disability.  You don't look at him and see a chromosomal abnormality, for example.

B)  Scold Dominic for not paying attention and model for him to say something like "sorry" or "yes" both of which he can say.  Seriously, tho, he'd done SO well in the store, and I wasn't about to make him sad which a scolding would do. Plus we have no clue who this guy was and if we'd ever see him again.  And why should I enforce someone else's prejudging of my kid? 

 C) Ignore the man myself and say nothing.


And I said nothing. I don't feel like explaining my kid and I don't particularly enjoy the job of educating the masses when I'm personally also tired and hungry.  Awareness and advocacy can just give me a night off tonight.  I do my best but today wasn't it.

So we came home and had dinner.

Sigh. After school care for next year.

So, because our insurance stopped paying for any treatment related to a diagnosis of Autism the day Dominic turned 7 (and even before then they were covering less than 1/4 of the cost), Dominic is going to be done at Alpine in early August.   This means he'll be at D11 all day - which for them is from 8-2:30.  The SPED bus picks him up at 7:35 every morning. In theory they'll be dropping him off somewhere in the neighborhood of 2:45, but we don't know that time yet for sure.  The SPED bus will, in theory, drop him off anywhere we ask them to within the boundaries of his elementary school cache area.  So we've been looking for a licensed after school day care type place thats not ridiculously expensive, doesn't make us twitch that he could be comfortable in because it would be good for him to have some unstructured peer interaction time.

We are batting zero.  We looked at the one place I've found that didn't give me the heebie jeebies over the phone, a Kindercare,  and both of us were under impressed with the quality vs price.  EG - they want $90 a week for after school care (can be up to 3hrs 45min each day, but would more likely be closer to 1and a half for us because that's our only time with Dominic, we'd rather hang out with him instead.. so that's like $12/hr.  Ridiculous).  It was cluttered and dusty, and the routine described to us by the director for "school age" kids - for example, they have to sign in to each "station" they use - just aren't things that would work for Dominic.   And while she said they could support him, we're just not confident AT ALL that this would be a decent fit for Dominic.

One of the fliers we picked up at the walk on Saturday was for this place.  I need to call and find out what they charge for their after school program because its pretty close to us.  I asked the people at the walk, and they said for respite it was $25/hr and for ABA therapy it was $50-$125/hr. And they pick kids up from their schools.  BUT, both those programs are listed separately on their flier from After School program.  So i'll do due diligence and call them. However, if we could pay $2K a month, we'd be keeping him at  Alpine ($2300/mo).

So we're kind of back to square 1.  We have no idea what Rod's work schedule will be in the fall, but the kicker is that we have to fill out the transportation form for next year before school gets out this year  so we're only a month out.   I'll be sitting down with my boss this week and feeling out his thoughts on me moving my hours from 7:30-3:30 ish to 6-2.  Which would be really hard for me sleep wise, but I'd figure out a way to do it. If he's amenable, then we'll plan to have one of us home every afternoon.  The only downside to that is it doesn't offer any additional peer interaction time for Dominic, so we're still open to daycare, or possibly even a babysitter arrangement with a neighbor if that were to come about.  But we've got to get something agreed upon before school gets out.

2012 Autism Walk with Pictures!

We walked the 5k yesterday for Alpine, and it was a lot of fun.

We got there earlyish for parking and to browse the vendor tables.  There were probably the same number of people there as last year, and the day was just gorgeous.  We will be following up on a couple of the vendor tables, but the most interesting one was the special Olympics table.  Apparently Dominic's old enough to start doing some sports type stuff through the special Olympics.   Which we think would be really good for him.  So we've got to get the medical release done (will do that in May at the doc appt) and get him all applied, but there's a ton of individual and team sports he could do. And they're free. Free is good. Very good.

So after we did the vendor tables, Dominic went for a brief visit to the playground:

As always, he had to spend  some time in the weird spinny thing.  (sensory seeker crack)

After the success of taking Shanti with us last year, we brought him again this year.  It was really warm (in then 70's), so we gave him frequent water breaks.  And yes, that is a skull and crossbone pookerchief you see around Shanti's neck.  He's a stylin' poodle.

We've had an interesting evolution with the weird giant stuffed armadillo.   If you remember the first year, Dominic was terrified of it.  And in fact cried. Alot.  Last year, he was only apprehensive and interacted a little bit.  This year, I was SO pleased that he went right up and shook the Armadillo's hand.  No apprehension nothing.

But Later... he spent probably 10 minutes PULLING the armadillos tail saying "TAY LA" while half a dozen adults (including 2 of the Alpine Therapists) laughed hysterically because it was so funny.  The armadillo got in on the act and played with him. It was cute.

In previous years, he's had a hard time with the kids race.  He wouldn't do it without adult help.  This year, tho, Rod started out jogging with him, (and he had the dog on the leash, of course. Best.Dog.Ever) and shortly into it, Dominic took off like a shot and ran the rest of it full tilt. Loved it.  Here he is with is medal.

Then  the real walk started.  Dominic was ahead of us for the majority of it.  Most of the walk was spent with us trying to keep him closer to us ....

When what he really wanted to do was RUN. 

Some of it was like this, tho.

We finished the 5k in right around an hour.  So we were going at a good clip.   Dominic slept in today ... guessing the running wore him out.   So, thinking maybe he might enjoy track and field?

I'll blog it later.. but couldn't resist

Here's a picture of Dominic from the Alpine Autism 5K today.  We had a ball, but I don't have time to blog it all right now.... will come back probably tomorrow morning and update with details and more pics:

i like it when...

I pick Dominic up from Alpine and they tell me he had a perfect. PERFECT. day.

Zero behaviors.  High verbals... even with a new therapist today.

And sentences are apparently going very well too.  We'll have our monthly parent meeting sometime next week i'll get more exact numbers, but this month has been a rollercoaster to say the least.

Monday Ramblings

Dominic had a MUCH better day today at Alpine ... almost behavior free, and verbals are BACK to where we want them to be. 

Saturday at his chiropractic appointment, I figured if we were going to embrace NAET, we might as well go all in.  So i took over a few of his supplements, including the SPEAK EFA and asked her to check him for allergies against them and help me calibrate dosage using her muscle testing technique.  And what do you know, there was something in the Speak that he was reacting to.  So she fixed it and helped me calibrate dosage of that and a few others (yay, we can drop dosages on a couple of things).  She confirmed my intuition on the quercitin dosage to get us thru pollen season spring and we went on our merry way.   She also did a major cranial adjustment for him.  Poor kiddo feels so much better when shes done but hates the actual doing.

~~~~~~~~~~

He's back to fixating on Dora the Explorer DVD's... which has been a while.  This time, tho, he's gotten out his little rubber frogs and is playing with them during the froggie section.  Which is cute.  But the DVD's are ear worms waiting to happen.  Funny - the portion of Dora's travel over the ocean, he kept saying "Shit".  Rod and I looked at him, made him repeat it, and finally realized he was trying to say "Ship". 

~~~~~~~~~~

The walk is this weekend - the weather is supposed to be BEAUTIFUL, so if you're local, please come walk with us.  You'll get the annual Team Dominic button and you'll make a lot of people happy.  If you haven't already registered for it, you should do that asap so you're guaranteed a t-shirt.   If you're not local - you can sponsor our walk via the linky to the right.  I can definitely tell a difference this year versus years that I spam people constantly to sponsor...  We appreciate any and all support and Alpine does too.

~~~~~~~~~

Some awesome, thought provoking articles from the blogosphere today:

This is our future.  And it makes me so sad.  And makes me want to work that much harder to ensure that Dominic does not fall into this category as an adult.

And I want to find someone who can sell me Camel Milk for as little as possible.  Anyone know a source?  (stop laughing, really).  All joking aside, its on the list as something to try should the opportunity arise.  Why?  Because it works for some kids.  That and I'm driving the bus.

Somebody lost a Tooth....

At Alpine no less.  His favorite therapist got the job of pulling it the last way out when he couldn't.  Skeeved her out, but he more than made up for it by spontaneously blowing her a goodbye kiss each of the last 2 days.   They gave it to me in a baggie to bring home, and he asked for the baggie very specifically ("I want baggie") and I haven't seen it since.  Who knows where he hid it.

Thursday updates

Dominic’s behaviors were going well at Alpine but not so much yesterday, hopefully its high histamine triggered and adding Quercitin like I did last night and this morning will have some effect. Oddly enough, D11 reports him having great days on the days that he has major non compliance at Alpine.  I am starting to think that the difference in expectations between environments is wearing hard on him.  Only ~6 more  weeks of school this year and then we’ll be to just one environment.

So far, I’m under impressed with the Speak EFA supplement.  Not only have we not seen an increase in verbals at Alpine, we’ve seen probably a 30% decrease this week at Alpine (but D11 numbers are holding steady, which is just weird) Frustrating. Maybe its histamines – allergy season is hideous this year and he’s got the dark circle allergy shiners going on.    But we’ll keep trying, maybe when I up the dosage this weekend, we’ll see something.

I’m burning out on writing tons of posts, and frankly I’m completely over Autism Awareness month.  And it is only the 12^th.

But we are walking in the Alpine 5k next week. If you’re local, we want you to come out and walk with us.  We go at Dominic’s pace.  The first year, that had us dead last.  Last year, we finished mid-pack.  This year will probably be the same.  If its not rainy, we’ll be taking the dog along as he was TREMENDOUSLY helpful in keeping Dominic from freaking out inthe crowd last year.

Updates on this new EFA supplement.

We started the new EFA on Saturday.  The instructions specifically said that one of the things you could expect when starting EFA’s (and remember, Dominic’s been on EFA’s of one variety or another for 4 years, so he’s not new to them in general) were increased emotional outbursts and transient moods which balance over 2-3 weeks.  We didn’t see anything like that on Sunday, but he did Stim like crazy (and the very gross annoying stim of spitting is back.  He hasn’t done that one at home like this in MONTHS).  He also was extremely chatty and independently got out the train set that he hasn’t played with in at least a year (if not longer), set it up, and put a toy horse on the tracks then proceeded to run it over with the train.

Yesterday he had an awesome, happy day, but had lower verbals than usual at Alpine.  So we'll see how things go over the next few weeks.  As we all know, I simply don't get excited about anything anymore.

The paperwork that came with the EFA said that if we took before and after video (they want a 4 month interval to really see if there’s a good effect), and sent them in, they’d send us 3 free boxes of the supplement.  So I took a couple of quick video’s yesterday and we’ll take more in 4 months.   Hey, they’re expensive, might as well try to get a break on them.

About the people who take care of our kids.

We are so lucky to have such amazing people in Dominic's treatment team - from his bus driver and aide to his school district para / sped teacher, to his one on one therapy team at Alpine.  I knock on wood every time I think about it, because not everyone has such a good set of people to take care of their kids.

My online friend Kim has had a different experience.  The bus aide for her 9 year old non verbal autistic daughter assaulted her a while back, and the original story is here.  They are taking the next steps now, to maybe get the attention of the bus companies to make sure they train aides, etc.  The entire autism community is watching, because – as Ginger Tayler says, Kim is a nationally known activist and author – if someone is bold enough to abuse her daughter, none of our children are safe. Certainly while Dominic could not actually TELL us if he was being abused, I think/hope that his behaviors would change dramatically and he would refuse to be around a person.

 

Jess over at Diary of a Mom talked this previous week about how to start teaching her autistic daughter about appropriate physical boundaries.I have no idea where to start this with Dominic, but its constantly in the back of my mind that soon we need to do something.

All of the therapists at Alpine are younger… most of them are in their early to mid 20’s (if my age guessing ability stands), compared to our school district teachers and aides who are all well seasoned and close to retirement..   I had originally been thinking that age difference was because of the energy required to handle the stress levels of working with ASD kiddos one on one all day long, BUT, this post over at thinking moms revolution of a letter from a 21 year old autism activist makes me wonder if its not an awareness level thats different in the younger generation of teachers. That older teachers don't have the resources because children with Autism (a complex brain injury) are so very different than children with genetic alterations (eg, Downs)

"First, most teachers, like me, had never seen autism until recently, and so when presented with it, they face it like they would any other disability. That’s a problem. Second, teachers, don’t usually have super close relationships with the parents of the children they work with. They don’t have the luxury to pick their brains for hours a day like I have in the home setting. These thinking moms do countless hours of research and are a wealth of knowledge. This is where the real learning happens. Another problem. Thirdly, teachers are overworked and underpaid. They bust their ass all day with little thanks, and even less pay. Their classrooms are overcrowded and under supplied. When do they have time to spend hours pouring over the latest research, and if they did have the time what incentive would they have to do so? ....... Those who do care, and want to help the children in their classes are faced with a lack of support, education, and training. THIS IS A HUGE PROBLEM."

Egg Hunt... Ton of pictures!

We were invited yesterday to an egg hunt at the home of one of Dominic's Alpine classmates.  We decided to go... having never gone to a private function with these folks, but wanting to.   Turns out, Dominic is incredibly well behaved in a large group of SN kiddo's.  One of the best overall behaved kiddos there.  He had a great time.... Here's the story in pictures:

The turtle fascinated him when we arrived.  But he was wary. Very Wary.  In fact he freaked out at the thought of Mom or Dad Touching the turtle, much less himself.

Then we went outside to hut for Eggs.  He was pretty enthusiastic once he realized what the point was.

And then... THEN... he realized there was something INSIDE each egg.  It was a giant AHHA moment.

His favorite was the slinky. Mostly it was candy, but given the audience, all of the candy was natural - no artificial colors/flavors, so he will get to have some, slowly.

He even wanted to share the slinky with Mr Turtle, who he was no longer wary of.

Chance encounter...

The other day when I picked Dominic up from D11 at lunchtime to run him over to Alpine for his afternoon therapy, I had the most interesting chance encounter with a random educator.  No idea what this ladies role is, but she clearly has interacted with Dominic at school over the last couple of years.

She started the conversation by saying she'd noticed how much Dominic has grown this year, and we kind of chatted about how thats what they do when you feed them, etc.  Then she said that she'd specifically noticed he was attending better and talking more and that she was so pleased to see it. I could tell she was weighing her options on what she said next, tho.  And that was when she shared with me that she has a 37 year old developmentally disabled daughter, who doesn't speak. She told me that she's so proud of her daughter, because she's learned how to be physically appropriate (like crossing her legs when she sits), and she independently rides the bus each day to her community based day program.  That she can't work because her fine motor skills aren't there, but she stays busy.   I just shook my head and told her I didn't have any idea how she did 30 years ago what I'm doing now, when the programs and support networks and awareness just weren't there. (to say nothing of the internet.  I'd've been completely alone without the internet in the beginning of this journey)

And then Dominic came out ready to go.

I wish that the older generation of SPED parents were more readily available for the younger generation to turn to.  They had to fight battles that paved the way for the ones we fight now.  They got IDEA passed.

Lets play Non Compliance bingo!

So Thursday was not a good Therapy day for Dominic.  For the second time (ever, and both in the last month), I walked in to get Dominic at Alpine to find him in full non compliance - which means he had 2 therapists, one directing him with instruction and the other sitting behind him on the floor, physically hand over handing him to each item.  While he screamed and flailed.  So lets look at possible causes.

- He didn't finish his chicken at lunch, actually he had less than a bite (its a new recipe and he doesn't like it at all).  The NC episodes both times followed poor lunch consumption and were at the end of the last session of the day, when he blood sugar would've been tanking.

- He's got allergy shiners again and the pollen and mold counts are ridiculous here today.  Seasonal allergy symptoms can make a person miserable.

- Thursday morning, he got up and turned his light on at 5:30.  He usually sleeps until past 6.  So who knows how long he was awake before he turned the light on, but there was probably some sleep deprivation involved.

- He's either got a lower GI bug or is having a yeast flare.  In the 3 hours he was at Alpine alone,  he pooped 3 times.  I'm on my last bottle of colloidal, and have another order that should be here soon. At which time we're cranking the dosage back up for a few days.

- Alpine pushes him far harder than any other setting.  Alpine is also the only place we get reports of behavior issues like this.  He's stubborn (like his mom), and when he hits his expiration point, he's just done.  If he did this kind of meltdown at home more than once a blue moon, I'd need medication.

- Supplements / diet- there were no changes that might've triggered this, so that wouldn't be a cause.

~ Its the full moon.  that always is a factor in our kids.

~ and we can't forget the growth / development spurts that can cause issues, too....
~~~~

Its frustrating because at home we're seeing some interesting shifts this week.

Thursday morning, he was taking his small toy dogs and giving them baths in the CARS movie Semi trailer that normally is for McQueen.  That is very imaginative.  He's been racing his cars around lately.  He's been using different sentences independently at home, for example, instead of just handing me Shanti's collar and saying "Collar", he's been handing it to me and saying "Put on Collar"

We also only have a few more months of being able to afford ABA and we want really badly for him to get the most out of it.  NC episodes mean he's not getting any benefit from that time.  And as expensive as Alpine is, they're the cheapest ABA center based provider in the nation. (because they're a non profit).  Even if we were to find someone qualified to do a home based continuation program after school next year, we would be looking at a minimum of $60/hr out of pocket.  (Alpine is around $42/hr)

Researching...

Its probably a good thing I compulsively research, and try to stay on top on the latest and greatest interventions that other autism parents are trying because every so often one resonates with me that we want to try.  There are lots out there that we don’t try, too.

I caught a post over at Autismweb from parents talking about what interventions best helped their child with apraxia, which is a speech disorder in which the syllables  of the words get all mixed up.,  Dominic does this.  Less than he used to, but he still does it.  For example, instead of blanket, he says banketlay.  One of the things one person mentioned as being  helpful was the Speak EFA.  Now, back in January, Dr K noted that Dominic’s EFA  levels were a little low, so encouraged us to increase his fish oils.  Which we did.  But yesterday when I found mention of this particular combination (of high EPA/DHA fish oil, Vit E and Vit K) being specifically marketed to increase speech in OUR kids (it was MADE for them, based on parents needs), I was intrigued.   So I’ve done some communicating with the company (LOVE that they’ve emailed me back rapidly.  Good communication is excellent), gotten my couple of questions answered appropriate, and I’ve ordered the starter kit to try.  If  we get good results, it could be a keeper.  The testimonials are certainly encouraging (but we all know all kids are different, etc etc)

I also found an essential oil blend that is anti bacterial and anti mold. As in, it’ll kill mold.  Given that my allergies and Dominic’s allergies are flaring (and we keep having to retreat Mold w/NAET in both of us, making me think that we’re getting exposure somewhere, potentially at home), I’m going to be spritzing the house with this EO when it arrives.  Since I’m not allergic to scents anymore (yay NAET), it should work out beautifully.

There’s tons of buzz online about a new protocol coming out of Europe/Russia, regarding GcMAF, which is being used by some US Autism Doctors as a prep for stem cell transplanting.  The idea is the  macraphages eat viruses and bacteria, but because they are a form of the vitamin D binding protein, they have no side effects.  I caught the first whif’s of this from the Thinking Mom’s Revolution blog.   Because we talk to each other.  And I went and spent some time reading DrBradstreets blog about it. And its interesting. But the price is prohibitive right now, and its just too new for us to even think about.  I’ll keep watching tho.  And maybe down the road we’ll ask Dr K what he thinks… and we’ll see.

this and that...

On eye contact…

Dominic has made great strides with eye contact over the last couple of years, but until very recently it was still fleeting.  So he’d look at you ever so briefly but not really connect.

In the last week or so, I’ve been making a real effort to force deeper eye contact during our evening routine.  To the point of literally using my finger to point at my nose when I want him to be looking at me.  Its working!  I’m so thrilled!  Its so much nicer to go through the bedtime routine and have him actually LOOKING at me when he’s talking to me.  He did it for Rod last night, too, and Rod was equally thrilled. 

No idea which intervention its related to, but we’ll take it.

~~~~~~~~

Verbals seem to be holding steady at Alpine. Interestingly we’re back to Mands being more prevalent than tacts (so he’s requesting more than he is labeling.  I think this may be a function of more sentences)

~~~~~~~~

I think Dominic’s got another bacterial overgrowth in his gut… so we’ll be doing another round of high dose Colloidal silver to get rid of it.  He’s just been very stinky, and silly, and in the bathroom too frequently each day. 

Okay, it just felt weird not to...

So I've created a site for Dominic's Team to take donations towards the Alpine Autism 5K walk later this month...  See above.   We're not competing this year, but we are walking and would love company (go register now and you'll end up with a tshirt and cool goodie bag) if you're local! Oh, and there's a 2012 Team Dominic button for those who come walk with us... i just designed and ordered it - here's the design...

World Autism Awareness day and Vitamin A protocol

Wow, there’s some amazing press out there today for World Autism Awareness day, especially following directly on last weeks announcement that the numbers of current 12 year olds  are 1 in 88 (1 in 54 boys).  I still don’t see whats worth celebrating and am not lighting anything blue today.  Its just another day.

So, to borrow and quote heavily, because so many of these are more eloquent than I…

 

The lovely folks over at Thinking Moms Revolution have a great post out comparing media coverage of the Autism epidemic to television news coverage of the Vietnam War immediately following the Tet Offensive in January 1968.  That was the point where people stopped believing the rosy picture being painted for them.

Quoting heavily from the above link, but really, you should go read it yourself:

“Doctors aren’t, as a stereotype, known for their small egos, yet last week they allowed themselves to be blamed for misdiagnosing Autism since the 1940’s. With a small exception of subtle cases, Autism is not hard to diagnose. Granted as an Autism mom I’ve become more familiar than the average civilian, yet with no medical training, I can spot a kid on the Spectrum from three aisles away in Target on a busy Saturday morning. It’s mind boggling that as an entire profession doctors are letting themselves take the fall for missing thousands and thousands of children who would have been flapping, stimming, possibly nonverbal, in diapers at 10 years old, and in some occasions violent. Yet, we didn’t hear doctors utter a peep in defense of their profession last week. Are we really to believe they would take this level of criticism without firing back? If we are willing to accept that our physicians are that poorly trained and that incompetent aren’t we terrified as a nation about our medical care? For any other profession accused of this level of incompetence there would be Congressional Hearings!  They didn’t misdiagnose these children because they didn’t exist.… Parents no longer believe what they are told about Autism or vaccine safety in the news because it is incongruous with what they are experiencing in their lives; we see more Autistic children every year and we hear vaccine injury stories far too frequently. The word ‘mystery’ doesn’t fit for Autism any more either and neither does saying “we have no idea”. Parents aren’t buying it. We have seen too many linear experiences of regression into Autism following vaccine injury.  Doctors cannot point to actual safety studies for the current vaccine schedule because they haven’t been done"

And there’re all sorts of articles around about how early intervention is KEY.  Hate to break it to ya’ll, folks, but Dominic didn’t begin his regression until after his 3^rd birthday (coincidence that we delayed all his shots for 2 years???).  He had aged out of the early intervention programs before we got any sorts of guidance from puzzled doctors.

Then there’re the FEW doc’s who are willing to talk about healing and recovery.  Here’s one that talks about diet influencing brain inflammation. Imagine that. 

Hey look, Donald Trump is actually taking a stand and saying that he thinks there’s a correlation between vaccines and Autism.  AND he’s got the pull to get the media to pay attention to him:  

And the Canary Party along with a bunch of other grass roots org’s is calling for the firing of all the government officials who seem to be unbothered by the increase in Autism numbers… 

~~~~~~~~~~~~~~~~~~~

So we did the high vitamin A protocol with Dominic this weekend. I actually think he was very chatty over the weekend, and behaviors were pretty good.  He had a good morning at D11 today, and we’ll see how he does at Alpine.   As usual, we don’t get excited about anything, because its too much energy to ride the rollercoaster.  We’ll see how things go this month.

doing what he does best.....

At Carrabas for dinner, on a gluten kinda night... this is Dominic dipping bread in the calamari sauce (spicy marinara)

And then doing what he does best.... eating.

(for being cell phone pictures, the resolution isn't too bad)

its Autism Awareness month.... so... here's a gem I found on facebook.

As we all know, smoking is not the only thing to cause lung and other cancers - but it is certainly a major player.  I'm personally pretty sure in 40 years we'll know that there're a slew of environmental things that contribute to autism and vaccines are a major player. Its going to take a HUGE paradigm shift to accomplish this - the pharmaceutical industry is far larger than the tobacco one was and vaccines are far more lucrative as an industry.   What we need is for people to stop thinking  that CDC has our best interests at heart and realize that they are puppets to the industry with the fattest wallet.

Here're the references behind the graphic (also found on facebook)

http://tobaccocontrol.bmj.com/content/11/suppl_1/i110.full
Am J Public Health. 2006;96: 222-231.
J Natl Cancer Inst. 1994;86: 1048-1049.
N Engl J Med. 1959;261: 603-604.