DAN appt followup

So, the good news first...

Dominic's stool test came back SO GOOD!!! We have finally, finally managed to get the inflammation almost gone. Lysozyme levels have come down from 1040 to 36!!!   No dysbiotic bacteria, either (I had suspected Clostridia), he did test high for Sacc B, so we will stop supplementing with it.   Little low in a pancreatic enzyme, so adding enzymes back in.

And the not so good news.

We are still playing neurotransmitter bingo.  All the excitory NT levels continue to rise, even tho when I asked them last time what we could do to counter it they suggested lots of B's and we've done lots of B's...  So we're going to try a couple of very expensive sup's and see how they do.  There is a direct correlation to the high glutamate and self injurious behaviors (biting himself specifically) that he's been doing more of.  We're going to add TheaNAQ and CalmPRT

They'd also like to see us add a months worth of Colostrum (his SIGA levels were a smidge under normal), and Protandim to raise glutathione.  Neither of those could I justify buying this month, so they will just have to wait awhile

They'd really prefer we stop the Bentonite clay, and frankly we've been tapering down, and they'd like us to stop colloidal silver entirely.  I love what the unique healing protocol has done, BUT, here we are a year later and the neurotransmitter levels are still rising - which she promised would not be the case.  SO I am at a point right now where I don't have any scheduled appointments with her, but I do have quite a bit of Bowel Strength left in the cubbard. I will likely taper off the silver this week, and then try to get the bentonite down to what he muscle tested for (2 caps a day - currently he's on 20, he has been as high as 60). I have enough Bowel Strength on hand to stay at the current dose for another 6 months, but I expect to taper that down too now that we've seen such improvement in his gut inflammation.  So what I have will last even longer.   We will re-muscle test him in a few weeks to tweak dosages.

Anyway, I came home with my usual post-DAN appointment headache. It baffles me that I can drop all our paperwork off 2 days in advance for them to peruse (by their request), have an 8am appointment scheduled, and still not see the doctor until 8:45.  It really baffles me.  And sitting in a tiny room for 2 hours is just not good for Dominic.

Zoo Trip, with pictures

The CC Alumni club set up a CC night at the zoo last night and we went. I have not seen Dominic so excited about anything in I cannot remember how long. He talked about the Zoo, and giraffes and elephants and tigers a ton for the couple of days preceeding it, to the point that his therapist said to me when I picked him up yesterday “Wow, he’s really looking forward to the zoo, isn’t he”.

Then last night, as we were getting ready to go, I told him he should maybe leave his snakes at home.  And he did.  This is ENOURMOUS.  I cannot think of a time that he has gone anywhere without some sort of fidget toy in his hand. Even pre-regression, he liked to carry around strings.  So to willingly leave all fidgets at home blew us away. 

We did the usual zoo tour, minus the elephants and meerkats because that part of the zoo is closed for renovations right now. No issues at all, no non compliance, no wandering, he did amazing.  We rode the carousel, which he loved, had very bad hotdogs at the café, saw the tiger and the bears and the pocurpine, listened to the wolves howling (first time I’ve heard that, but we’re not normally there at sundown), saw some friends, and then went home. 

This, that, and the other thing

 This –

We had our regular monthly Alpine parent meeting today and it went very well. Dominic’s behaviors have improved significantly since our last meeting, he’s making good progress on all programs except for numbers, and verbals are holding steady.  The list of things that D11 gave me to have Alpine focus on this summer include numbers (both receptive/expressively identifying them and counting), basic writing, and the sight reading program that they’ll start.  I did show them Dominic’s end of year ABBLS and they were quite impressed.

That -

All parties now agree that putting Dominic into the YMCA summer camp the week of July 4 would be awesome for him socially.  They also think that, with proper preparation of the staff by us to make sure he’s either line of sight to a counselor or buddied up with an older child, he’d be perfectly safe.   I’m going to call again and talk some more with the camp director, and set up a meeting for us to go talk with her in person to make sure we feel warm and fuzzy.  I will also try to find out exact plans for that week with regard to field trips.

The other thing –

I’ve been doing more reading on these energy patch thingies, since we’ll be starting them this coming weekend.  They are actually called digital homeopathy, and here’s some interesting reading on them.The actual program we’d be doing is “Dr. Richard Hunts Medical Bioresonance Evaluative and Aura Patch System" Its very interesting to read, we’ll see what it does for Dominic.  I’ve been hearing buzz from other parents on a program called Homotoxicology, which is something that we may look into down the road as well.

Washing the deck...

Somehow, its late May.  Which means it time to scrub the deck for summer, condition it, and waterseal it.  Dominic and I took care of the scrubbing part this morning.

Also, his elephant and snakes helped.  No Really.

Funny Boy, and other news

So the last couple of weeks, Dominic's been wanting to carry around a reusable grocery bag with some of his cars it in.  In the beginning of this, we'd gotten him the bag for the roughly half a dozen that he wanted to carry around so that he'd quit dropping them.  We quickly broke the habit of him putting them in his backpack and taking them to school, but it seemed harmless to let him bag and carry them around at home.  Until they started increasing in number.... to the point that the fabric of the bag nearly tore out under what seemed like 20 pounds of small cars.  He slept with them, had them on the dinner table for dinner, carried them outside, took them with us shopping (and they stayed in the car), etc. The other night, after dinner and after his bath, I told him firmly that it was time to put the cars in their drawer. and we did. He was okay, until he said goodnight to Daddy, at which point he melted into crocodile tears of unfairness.  So we got out 4 cars for him to sleep with, no bag.  And that was that.

I have to tell you, tho, at the point that he started weeping dramatically, it took all I had to not burst out laughing, because it was SO drama boy.

~~~~

Today, I had a chiropractor appointment immediately following his.  We've never done it this way before because I wasn't sure how he'd do, and this only happened because she had to cancel my appointment earlier in the week.  So we do his stuff, and then i settled him down with his iPad.  No problem.  I hop up, and he tells me to RELAX. (giggle). She goes my adjustment, an I say OW a couple of times when she was working on my feet. He hears me say ow and takes her hands off of me, and then body blocks her from working on me.  Adorably protective.  It was cute.  I flipped over for her to adjust my neck, etc, and he climbed up on the table with me and sat by my feet.  With the iPad. Its an awfully good thing she's kiddo friendly.

~~~~

In other news, Alpine had agreed to use the PCS reading program with Dominic intensely this summer, so I've gotten it ordered.  I know that its kind of a big expense, but we'll donate it to Alpine and the take the tax write off.  More importantly, I keep going back to a post I saw probably years ago now on the BeyondGFCF yahoo group (parents who are comparing notes, etc) in which one woman said that the way she'd gotten her son to speak was to teach him how to read.  From reading he got the language, and then speaking came.  Plus I'm such a recreational reader, that I want him to have that enjoyment too. 

You know how I've said since the beginning of this journey, that Dominic's brain injury was triggered by a virus?  Well, our chiropractor fully agrees with me.  And she's been researching like mad to see if there's anything she can come up with to help eradicate the virus.  She may've found something that'll work. Its a company that does energy patches that you wear for 3 days at a time. Yes, we know these are pretty far out there in the Woo area, but we've tried more expensive stuff that hasn't done anything, so we'll give this a shot too. However, the interesting part about all of this is that our Chiropractor managed to talk this company into doing a "free sample" professional aura analysis based upon a photograph she took last week of Dominic.  (have i mentioned she's awesome.  They normally charge $200 for this analysis) Using that photograph, don't ask me how becauseI haven't a clue - but it was free so I am fine with it, they specifically pegged Dominic's biggest energy issue to be from a virus called R1H2.  In fairness and full disclosure, I cannot find ANY scientific reference to R1H2 online. I can only find reference that this company has out there.  So we'll see. This will fall in the category of not leaving any stone unturned and we know that wearing a energy tuned patch won't hurt him. Its also really cheap compared to other stuff we've done with no results.

ABBLS yearly update

We had our end of year meeting with Dominic's SPED teacher yesterday afternoon.  Remember, they are using the ABBLS with him, so he's got specific things he's learning.  Here're the differences from May 2011 to May 2012

These are the percentiles of where a NT 7year old should be

Receptive Language : 2011: 31%, 2012: 64%
Imitation: 2011: 75%, 2012: 95%
Play and Leisure: 2011: 35%, 2012 48%
Social interaction  2011: 30%, 2012: 43%
Classroom Routines 2011: 58%,. 2012: 79%
Reading  2011 7%, 2012: 21%
Math 2011: 0%, 2012: 5%

Whats more interesting to me is the number of categories that've been added in this past year that he was at 0% for last year - they are:
Cooperation/Reinforcement: 86%
Requests: 32%
Labelling: 9%
Spontaneous vocalizations: 54%
Syntax and Grammer: 13%

He has SUCH a long way to go, but he's made a lot of progress this year.  At his IEP in Feb, they let us know they were going to start a new reading program with him that teaches total sight reading of words (no sounding out).  Its set up so that a child learns 5 words per unit, and at the end of each unit, theres a book made entirely of those 5 words.  Each unit adds on to the earlier.  I guess he's ALMOST done with the first 5 words, but hasn't quite made it to a book.  So i'm hoping we can do some work this summer to make sure  he at least doesn't lose those words over the summer.  If I can get Alpine to agree to make it an integral part of his day each summer, I will buy the system and donate it to them.

Right now its not clear what kind of support Dominic will have next year - budget cuts abound and they are trying to run the school district on a business model - supposedly someone is going to be brought in to show them how to make them more efficient.  So we'll see.  They are legally bound by Dominic's IEP, and I'm not shy about letting them know that I know that.

Ramblings…

I’m feeling very much the square peg (working full time in corporate America, paying thousands of dollars a month for Alpine mostly out of pocket, doing DAN with Dominic) in the round hole of Alpine parents (who are primarily Stay At Home Mom’s married to Military husbands, paying under $50 a month for Alpine because they have Tricare  but who don’t do DAN because Tricare doesn’t pay for it).  We’ve been trying to be more sociable with other parents and its tremendously interesting the differences in situation.  Its hard to create intentional friendships with people when you very literally have only the fact that your children both have autism in common.  Especially when their autism is SO different.

At Alpine, the majority of the kids are far more affected behaviorally than Dominic is. Yes, he’s had his ups and downs with behaviors that we’ve managed to correlate to really out of sync levels of the excitory neurotransmitters aspartamate and gluatamate.  At our April parent meeting, the behavior data they gave us was fairly bleak with multiple non compliance episodes per day, to the point that they were timing them and he was losing 30+minutes of therapy per day because he was in a non compliance episode (which is not terribly far off from what we used to call temper tantrums – arm flailing, crying, refusing to do work requested of him, sometimes self injurious behavior like hitting/biting himself) . However, in the 14 therapy days since that meeting, he’s had exactly 1 non compliance episode and the stimmy stuff is way down.  So hopefully we’ve turned a corner there.

Anyway. He’s in general much better behaved than the majority of the kids at Alpine. He will follow instruction. He does not run away from adults at any given time. He doesn’t purposefully destruct property. He’s very affectionate.

But, by the same token, he doesn’t fit well in a group of neurotypical children because of the almost complete lack of conversational speech. He can and does use single words (and sometimes 2-3 word sentences) to get his needs met, but he has pretty much zero conversational speech.  

We are hoping to try something fairly radical for Dominic this summer… and that is to enroll him in the YMCA summer day camp for the week in July that Alpine is closed.  I’ve spoken to the Y, and they say they can support a high functioning kiddo like Dominic.  I’ve spoken to his case manager at Alpine, and he thinks that it would be an excellent experience for Dominic to spend a week getting some neurotypical socialization… We are going to percolate on it a bit more, but I hope we decide to do it.  It would be an excellent trial, which if it goes well, could mean that he could do the YMCA summer day camp all summer next year (and honestly, I must be jaded, because I’m actually excited at the thought of ONLY spending $2500 for summer care for Dominic.  This summer will be almost 5x that)

Dear incredibly out of touch coworker:

When you tell me to go have a cuddly afternoon with my kiddo, it takes everything in the world that I have to not bite your head off.

My kiddo is equally likely to spend the afternoon growling at me, spitting on me, hitting me,  flailing his arms in the air, scripting, biting himself or me and/or banging his head on the wall as he is to spend it being in any way shape or form cuddly.  I never know what I'll get when I pick him up in the afternoon - will he have had a good, productive therapy session or will he have spent who knows how much time in non compliance, which consists of the above - which in my mind is a tremendous waste of the money we've been killing ourselves to pay out of pocket for therapy.

I'm keeping myself together in my workplace literally by the skin of my teeth most days, because the refrain in the back of my head is always around trying to find the elusive therapy / supplement / unicorn poop thats going to give Dominic the tools he needs to even have a hope of being an independent human being.  I simply cannot deal with being patronized. 

Kindly refrain from being the proverbial straw, this camel's back is entirely too full.

And... the winner of our Afterschool business next fall is...

No one.

We decided that we're just not that comfortable with someone other than ourselves picking Dominic up in a private vehicle each day from D11.  Especially if that someone might rotate from day to day and maybe be someone he didn't know.

So, the school is filling out transportation plans for Dominic that include a drop off after school by the SPED bus.  School gets out at 2:30... I'm guessing dropoff will be between 2:45 and 3, depending on the bus drivers route, but we will find that out in the fall.   If for some reason Rod's schedule can't be tweaked to be home by 2:30 every day, then I have clearance from my boss to change my hours to 6am-2pm every day.

While it doesn't address the issue of additional out of school socialization, I'm comfortable committing to getting Dominic over to the gym for their daycare a couple of times a week.

Toured Zachs Place today

In our quest for an after school solution, we toured Zach's place today.  Its set up in a home, and is a neat facility.  Dominic was instantly at home and went outside to play.  They have a ball pit.  He made himself quite at home.

Based on the sliding scale, we would probably end up paying between $7 and $8 an hour (plus $3 for going to pick him up from D11), and he'd be in a situation where he was in a 1 adult to 3 child ratio.  They would have no problem with only a few days a week

So, second place we visited. First place we didn't get the heebie jeebies from.  I expect we'll fill out the paperwork and get him in their system for the just in case kind of scenario.  It sounds like they have a lot of fun - they go swimming a couple of times a week during full day summer care, they do trips to parks, and zoo's etc.

We'll be going to myplaydate.org Monday.

I have already started getting requests from the school to confirm Dominic's transportation needs for the fall.  So we need to make a choice soon.

So far we have as options

100% bus drop off at home sometime after school gets out at 2:30(meaning one of us need to rearrange our schedule accordingly)
100% third party pick up at school
Mix of the two.

okay, now I think we can call it a trend...

Thurs and Fri of last week and EVERY day this week Dominic has had stellar, fantastic days at Alpine. By that I mean almost zero behaviors (actually, several days were zero and the ones that weren't were like 1-3 growls) - no self injurious behaviors, no non compliance, no stimming, no melting down, no yelling, no eloping, no aggression towards therapists etc.    AND higher verbals than he'd had for the majority of the last month.   There's no Alpine tomorrow, so we won't have more data until next week...

but... we are officially in uncharted territory...

no idea if it was the end of the 3 weeks acclimation period to SPEAK EFA, or if it was having the Chiro tweak all his supplement dosages over the last few weeks via applied kinesiology (muscle testing), or if it is just the stars aligning, but we'll take it, AND we'll call it a trend at this point.

Now we see what next week brings. :)

I really hope this is my last post about moths.

After Dominic got out of the tub tonight - but before he got into pajamas - he spotted a miller moth.  and he was OFF!  I grabbed the camera and followed as my buck naked child scooped a miller moth out of my housplants....

Grabbed it in his fist...

And settled it into a plastic toy jar that has gotten double duty as a bug house.

Then, and only then, did he get dressed and go to bed.  With his bugs.


Oh, and my first Iris of the season is open!