Thursday, February 23, 2017

Yay for being able to tell me whats wrong...

We had a little drama this afternoon.

Dominic's usual routine is to come home from school on the SPED bus, come inside, set his backpack down, attach his ID lanyard to the backpack, and take his lunchbox the the kitchen.

Today, he came home at the same time as our curren roommate, Tim.  And the bus drove off as he was getting to the door since Tim was out there.  The next thing I knew he was very Agitatedly saying "Mommy, Backpack, backpack" and  was nearly in tears.  He'd forgotton it on the bus.  I called transportation, and his driver came back with it after her run.

So - She told me he forgot it because he was so busy high five-ing all his friends and that she wanted to tell me how much better he has been talking... She is working hard on getting him to independently say "Bye, Miss Mo"

It makes our lives so much easier now that he can tell us whats wrong instead of just screaming, crying and pointing.

Progress people :)

Sunday, February 19, 2017

Cooking - and legos

All of you guys know that I believe we've peeled back enough layers of Toxicity (thank you IonCleanse by AMD) that we are finally healing Dominic's viral brain injury.   If you pay close attention you also know that I figured out that the chiropractic miracle over Christmas was a combination of the right nutrition being in his system at the moment that his atlas was adjusted and his body could use it.  This product is a FINISHER, guys, we used it years ago with zero results and it was very hopeful thinking that I started it back up at Thanksgiving.  His body was just primed to be able to actually use it this time.


I increased his dose a week or so ago from 2 pills a day to 3.  
Thursday evening, we were getting his dinner - and therefore Friday's lunch - together, when he looked at me and said "mommy, Jelly".  He was asking for a peanut butter and jelly sandwich for his lunch. Okay.  So i helped him make it for himself.  Then he asked for a cucumber.  I decided on a whim to have him help me peel it.  No he did not cut himself, it just looks like he almost did.





I sent that video to our OT, Jonny, who was so impressed by it that he suggested we make today's session about cooking. I asked Dominic if he'd rather make egg cups or corn dogs.  He picked corn dogs. 

Then Saturday night, I had made him a plate and I told him to go heat it in the microwave for one minute.  The next thing I knew, he was saying "Mommy, its not working".  Turns out the fuse had blown.   But - the right tense of the verb???  Knowing something was wrong??? Telling me???  Wow.

Anyway.  Today was corn dog OT day. It was also lego day.  Both of these things he did amazing at, but what was BIGGER than that - was that he went back and forth between activities with zero prompting to refocus.

So...












 


And then he went and stood in the footbath bin, so he's having a footbath right now.

Color me amazed!!

And for the record - we are working on skills for independence.  So he cracked the eggs himself, mixed the cornbread batter himself... we did do hand over hand cutting the hot dogs and he did all the rest himself including putting on the "mittens" for safety.

 

Saturday, February 11, 2017

Twelve...

Today is Dominic's twelfth birthday - in many ways it feels like just yesterday we brought a sweet baby home, and in other ways it feels like we have lived three lifetimes in the last 12 years.

Dominic came into our bed about 6:30 to snuggle and as is our family tradition, we opened presents in bed:

 

 

 

 


We were so happy that his therapist Jonny and Jonny's other half, Hanna, joined us at Red Robin for lunch and then the zoo.  It was a fabulous day :)

 
Dominic likes to do "cheers" even more when it's freckled lemonade 



 

Mugging for the camera 


 
Hey man, got any lettuce??

 

Fun with Jonny

 

 
What was hilarious here is that he actually was yelling 


 


 
Fascinated by the wolf pelt...

 
This video totally caught his attention 


 


 














Monday, January 30, 2017

Tales from home based therapy - new exercises

Jonny has been working hard with Dominic developing a new home exercise plan for us to focus on since we got the other one mastered ages ago...

today was day 1 of doing it.  We are focusing on visual processing speed, core strength and body/spatial awareness.  We're also sneakily trying to increase his arm strength.

So first up are some vision exercises.
This is one of 3 vision exercises we do, and the only one i was able to film while supervising.  The idea here is by going from upper left to lower right we increase his visual processing speed crossing brain hemispheres. 




Then we do situps and pushups.  Pushups are very hard for him (weak upper body), so we do them on our knees and with him so he mimics. Situps are easier to get video of:




We are still working on lizards for reflex integration, tho on days we can ride the bike or go rock climbing, he can skip them. (yes, we are going to be taking him to the rock climbing gym in town as part of his therapy soon)



It was almost comical, as Jonny was finishing telling us about the exercises last night he said that he was going to bring us some "Yogorilla" cards for Dominic to mirror the picture of and get some body awareness via yoga. Rod, being a yoga teacher, had better ones already here.  And to Jonny's extreme Suprise Dominic did great with them last night.

Here he is today, slaying the yoga poses I asked him to do:




And I had him finish with child's pose....




The plan here is that we will do all these exercises a couple of times (i committed to 2) a day until mastery. 

Sunday, January 22, 2017

That was cool!

Last night we went to the annual Yule gathering with our friends (yes, we know its a month late, we like it that way).  We've attended this party for easily 20 years and the group of people who are there are very much family.

This is also a dog party.  We only took one because... well, just because. At any rate, there were probably as many 4 leggeds as there were 2 leggeds there last night and a fabulous time was had by all.  Dominic LOVES dogs of all varieties and was in his element playing with them.

The cool moment came as we were getting ready to leave.  Dominic was in his coat, headed out the door when he got obviously distressed.  I heard him saying "come on come one" and at first thought it was because he wanted to leave.  Then he clapped loudly and intently and in trotted a dog who had managed to get out the door.

WHAT JUST HAPPENED????

He recognized a problem, he asked for help and when help didn't come because we didn't understand him, he got the dog back inside himself.


Wednesday, January 18, 2017

orthodontia....


If you had told me a year ago - even 6 months ago - that we would be considering orthodontia for Dominic, I would've told you that you were crazy.

Yeah.
So.
Today we had a consult with an orthodontist who comes very highly recommended by our pediatric dentist.
That we were even willing to attempt this consult should tell you that Dominic has come MILES in the last few months.


What we are most urgently addressing is crowding on Dominic's upper palate that is keeping his adult canines from having space to drop in.  Secondary concern is an "anterior cross bite with an anterior functional shift".

Couple of things that are fabulous:
- Dominic ROCKED the exam, did great following directions for pictures and xrays
- The routine shift of spending almost 90 minutes in a strange office instead of going to school didn't phase him.
- somehow we have some insurance coverage for this, so our portion is WAY LESS than I was expecting and in fact if we choose their payment plan (1/3 down then the remainder spread out over the next 12 months), we won't even feel it financially.  We decided on the way home that all the years of STUPID expensive out of pocket autism treatment has completely jaded us.


so we have some options to discuss with our regular dentist next month.

1. Plan A - regular dentists does sedation and removes adult teeth.  cons: sedation is a crapshoot and per the orthodontist, that could make his underbite worse.

2. Plan B - the everything plan:  upper and lower braces; palate expanders / reverse pull headgear at night.  cons: Sensory boy in headgear?? you must be kidding.

3.  Plan C - Just upper braces addressing the spacing issue only for now.  Pros: Leaves a full spectrum of options for later should we think he could do plan B later.  And if we did plan B later if would just be an additional $400 (insurance!)


Interestingly Plan A and Plan C are roughly the same amount out of pocket.   We are leaning towards plan C.

Sunday, January 15, 2017

Ramblings...

Its been a very weird week.

Monday/Tuesday we had a 27 hour power outage.  The outage was the result of Chinook winds which brought along with the 100+ mph winds,  high temps in the 50's and 60's.   It was bad enough that the state patrol ordered the schools in the county to not do afternoon bus service and tons of damage around town.  We made the decision to stay home and ride it out instead of going elsewhere and Dominic did amazing. I'm shocked at how my routine oriented kid just rolled with dark, cold, and no shower (he had a sink bath instead).  

Tuesday afternoon was a very hard Speech Therapy session, but Thursday's ST was amazing. Never quite know how he's going ot do in therapy.

Then last night, Daddy and Mommy went on a date (dinner and a hockey game), so Mr Jonny, our OT hung out with Dominic for a few hours.  here's a sampling of the texts I got about the evening

We did a lot of ADL type stuff, multi step directions, and overall engagement was spectacular to say the least" (ADL = activities of daily living)

He used the microwave and tested the temperature of his food and then warmed it up more

Its really cool to see this side of him and have him not see me as a dictator. 


I think its really valuable to have the folks giving Dominic therapy interact with him outside of a therapeutic setting.  So I'm pleased, even tho CC lost the hockey game.... 

Saturday, January 7, 2017

Cooking show

Anyone who knows me well knows that my choice of TV when I'm by myself (and often when i'm not) is the Food Network. I like to cook, i like to get ideas, I enjoy seeing whats out there.  And its relatively mindless, and very positive.

So last night, I'm hanging out in bed watching Diners, Drive ins, and Dives while Dominic took his shower as I have done every night since he switched from baths to showers over a year ago.   Dominic got himself bathed, dressed and brushed and came over to me presumably to say goodnight. Instead he announced "Cooking Show!!!" with such excitement that I told him to hop in and watch with me.

And he did.

For an Hour!!!

My kid hung out with me watching a cooking show for a solid hour, during which he provided a running commentary on what he was seeing "Eggs!  Hamburger!! Cheeeeeeeze" and so forth.  If you saw my facebook status last night, you've already seen this video...



This is what he did - cuddled with the dogs, under a blanket, he just hung out and enjoyed himself...








Then we got goofy. Because thats what we do.  And who let his feet get almost as big as mine?????? 




I cannot remember being so relaxed and happy just hanging out with him EVER. He stayed a little while after Daddy came down and joined us and then put himself to bed. 

This recovering thing.. its really amazing.  I am totally blown away.

Wednesday, January 4, 2017

Takes from home based therapy - word search

So tonight, after a rousing game of Hungry Hungry Hippo (Thank you Sherri!!), during which Dominic was very confused as to the point (can't really blame him...its sort of a bizarre game)... Jonny attempted to get him to do a word search.  This was the FIRST time ever that Dominic even allowed it..

Jonny showed him what to do by circling 2 words in black, adn then Dominic figured it out and found the ones in RED in 3-4 minutes






For real - wow.   The cognition gains are coming in LEAPS and bounds.  I'm basically slackjawed.  I was telling my BFF tonight that it was our turn for a breakthrough. We've had gains on many protocols, but this last few weeks, whether it was the particular combo of supplements he's on plus the adjustment, or solar flares, or what - its the first major breakthrough we've had in the 9 years we've been treating Dominic.  It was our turn. 

Sunday, January 1, 2017

This is new...

So we are having a very quiet afternoon today, waiting for OT to start. Dominic is surfing YouTube and I'm reading a book.  I look up and I see a pen and a piece of junk mail on the floor.  That's weird.

I get up and he's written down the name of the movie he's currently watching.

Wow is all I've got. 




 
 

Saturday, December 31, 2016

2016 - Out with a bang - of hope

If I've learned anything over the last 8 years working to recovery Dominic, its that I should never get too excited, too invested because MOST things aren't going to help, and the ones that do, mostly aren't amazing.

The Ioncleanse by AMD is an exception.

And apparently magic Chiropractic resets are also an exception.  That said - Dominic's had chiropractic care from 3 very good doctors in the last 6 years, regularly, and I cannot explain what was different about this last adjustment. We'll be seeing him again on Tuesday and I'm going to see if there's something he thinks that might have been different.  So stars aligned, energy was right, the universe said its time. I have no idea.

Two amazing shifts to share with you...

First - Child of mine with such bad fine motor skills that school wanted to stop even trying to work on handwriting a few years ago... eating with chopsticks tonight.  Spontaneously (I had gotten a fork for him.. he did this)





And second... bedtime.  for 11 years 10 months and 3 weeks, we have tucked Dominic in.  A few nights ago, he started doing it himself. With no fanfare.   Check it out:



An other thing that this journey has taught me is to celebrate the inchstones, because we don't get milestones.  So tonight, we celebrate and we are hopeful.   We went for a sushi dinner (hence the chopsticks) and as we walked in, the server greeted us with "Hey Guys", to which Dominic responded in kind "HEY GUYS" very loudly.  First time I've heard him use that phrase and it was so cute to hear it so loud.   We are grateful and we have hope.   Here's to more healing and learning, and growing and gains in 2017

And, for balance and levity, here's Dominic hiding the dogs toy under our bed. They are not amused.

 

Wednesday, December 28, 2016

Mind. Blown.

So we've had a very low key school break thusfar.  Dominic has basically been independently amusing himself, whether via electronics, or playing with his legos or outside.  I have not done any of our OT exercises this week (i know, i know, but bear with me, at this rate we're going to need a whole new set soon) and have put minimal demands on him for working on his stuff.

If you haven't read the post I put out last week about the major shift we had post chiropractic adjustment, you need to before you read this.

Miss Ashley, Dominic's OT who moved away in May sent Dominic a very sweet present for Christmas - a lego set.  I've asked Dominic a solid 5 times if he wants to set it up, and every time he Said NO, took it out of my hands and put it on the shelf.

Jonny came for OT tonight.  Dominic got the lego's out and started working on them when Jonny arrived. (WHAT???)
Dominic got the scissors from on top of the fridge and PROPERLY and SAFELY cut open the plastic bags of parts and then proceeded ot DO THE WHOLE THING INDEPENDENTLY.  In fact, Jonny and I messed him up when we tried to help.  (this is a first. He's never done a whole lego independently. He also read us each step he was on).

Look at this focus.  This child sat for 45 minutes and focused like this.


Here's the tail end, when he finished.  So amazed.



Then, because its clear the atlas adjustment last week really was a HUGE reset button (though I know for a fact it certainly wasn't the first time he had an atlas adjustment, so I don't know  what was different), Jonny retested the last primitive reflex we're working on. Its not integrated, but its ENTIRELY different from the last time he checked (within 2 weeks) in how it presented.

right now I'm leaning towards not mentioning this whole huge shift to school... and seeing what they say.  He doesn't start back until January 5 so I have some time to decide.

Sunday, December 25, 2016

Funny story from last week

I am so behind that I'm posting things on facebook to remind myself I need to blog about them... this is from December 20, so about December 19, which is BEFORE the chiro appointment I told you about yesterday...

Funny story I need to blog, but instead am jotting here to blog later...
Regular routine is that Mommy or Daddy make Dominic's lunch and put in the fridge the night before. In the morning, Dominic gets out his lunch bag, puts the tupperwares in it and selects a few snacks, which Mom/Dad then appropriately prep (peel the carrot, slice the apple, etc). He also gets the dog bowls, cans of dog food, has me open them (doesn't have the fine motor strength to pop the cans just yet), and he puts them in the dog bowls, and bowls on the floor.
Last night, due to normal chaos, neither Rodney nor I managed to get Dominic's school lunch for today prepared. Not a big deal, doesn't take long, we figured we'd do it this morning. I was upstairs first, and immediately started on Dominic's breakfast (always "3 eggs, mush, raisins" which means 3 hard fried eggs, and a bowl of oatmeal with raisins in it).
Dominic came up, started to get his lunchbag out to put things in and I told him to hold on, that Daddy or I would make it in a moment. he looked at me, went to the cubbard, got out a tupperware, and said Mommy, Rice. I was paying attention to the eggs, so just kind of said Sure, whatever. next thing I know he's putting rice, thai peanut chicken into one tupperware, applesauce into another and getting out a carrot, saying "cut it". I had him get the knife, and the cutting board and we did hand over hand to cut the carrot, but he was apprehensive on cutting the apple so i did that one (finally something dangerous he's actually appropriately apprehensive about. he still wants to play with fire). then he packed it all up and got started on the dog's breakfast

Saturday, December 24, 2016

ooooh, this may be HUGE...

Those of you on my facebook already have seen a version this, but I need to document here and tell you the followons....

Chiropractic care has, for years, been hugely important for Dominics recovery. Due to circumstances beyond my control we had to find a new chiropractor this summer, with a very different style than anyone we have ever seen. He is very good with Dominic. So we all three got adjusted on Tuesday and then went out to Dinner.   While we were at dinner - so within an hour, Dominic had developed a distinct full body tic.  Wednesday I took this video, and you can see the tic was happening multiple times per minute.


 I pinged my chiropractor on Wednesday with the video and confirmed that the adjustment had realigned  a badly out of alignment atlas.  (The Atlas is actually part of the brain stem.  Very powerful adjustment)

Wednesday night, our OT Jonny was over to work with Dominic and was quite intrigued by the tic.  He did some experimenting with vestibular input and  the tic increased in frequency.  This led him to theorize that the tic was actually a resetting of his vestibular system because when given vestibular input the frequency increased greatly. So we guessed that the atlas adjustment put things in alignment and the neurological  pathways started firing again. I talked to our Chiropractor and a Chiropractor / MAPS candidate that I really like for her perspective on that and both felt like that was plausible and told me to watch and wait.  The tic frequency diminished over the last few days and today neither daddy  nor I have seen a single tic. 

So... some things have shifted and I want to document them.

1.  Daddy took this video this afternoon and sent it to me.  I was like "what am i watching"... to which he said - "he is behaving like a totally normal 11 year old, engrossed in his movie."


2.  Dominic has been VERY sensory avoiding for many months.  Light touches on his skin / back, etc had him loudly saying OW.   Tonight Rod was able to lightly touch his back on 3 separate occasions with zero reaction.  WHAT?

3.   It was unseasonably warm today and Dominic spent a solid 4 hours outside playing independently. He was squirting a water gun (something i've never seen him do with prompting much less spontaneously), helping with a construction project Daddy was doing outside (he carried the wood in when asked), and generally having a wonderful time.

We have had NO protocol changes since we added Get Smart right before Thanksgiving.... This is all from the atlas adjustment on Tuesday. Chiropractic is so powerful.

Friday, December 23, 2016

An Autism Mom's Christmas Wish list

When you have a child who is, at age 11, essentially non-conversational (see what I did, a few years ago that would have said non verbal. We're slowly... oh so slowly... making some major progress here), your priorities shift.

So these are the things I want for Christmas...


~ i want to know Dominic's favorites... I want to know what color is his favorite, what movie, what animal, what subject... I crave those things and because he doesn't have the ability to tell me I have no idea.  Frankly I'm not convinced he understands the concept of favorite.

~  i want to have a conversation with my child.  He's 11, I should be able to TALK to him and get a back and forth conversation going.  We have SOME back and forths, precious few.  To this day, the only thing he has EVER been able to say to me when asked "how was your day" is "school, fun". Were it not for his teachers, I wouldn't know a thing about his day.

~ i want him to have an age similar friend, that he can hang out with.

~ I want to be able to try all the amazing interventions that we just plain can't afford.   HBOT, Stem Cells, yadda yadda yadda (and I know we manage to make the things we REALLY need happen, but that won't stop me from wondering if those things could help him more now).

~ I want the security of knowing that he'll be able to take care of himself when we are gone.  I don't have any idea what will happen to/for him when we die.  No clue.

~ I want to be able to stop being terrified of the numbers.  he's got a 25% chance of developing grand mal seizures when puberty hits, and its knocking.   He's got a chance of wandering off and drowning; he's statistically likely to be abused by a teacher / bus monitor / etc... when the statistics are there and you can't deny them its like you're drowning in a sea of fear.

~ I want to stop seeing autism everywhere I go.  That child with rosy red cheeks, the other one with a facial droop, the toe walker, the kid screaming and flailing in the exhausted mom's arms.  They don't know yet.  They will.

I want the autism community to learn to have grace for each other.  To stop and and remember that article that acknowledged we have a similar level of PTSD to combat veterans and to treat each other gently.