Tuesday, July 25, 2017

Sensory avoidance - REDUCING

Back story -

Dominic has been in chiropractic care now for nearly 6 years, with one doctor or another.  When we started, I literally had to lay on top of him to get him to not hit/kick/bite the chiropractor.    He gradually started asking for it, knowing it helped, but also continued fighting adjustments because, sensory.

When our longstanding Chiro retired a year-ish ago, it took a bit to find another that was the right fit I ended up taking him up to a doctor who is also a special needs dad, who had been adjusting me for a few months at that point.  This was first doctor who told me that on a spectrum, kids with Autism have tone similar to kids with CP, like about halfway as bad.  Our current MAPS doc who is a chiropractor as well has since agreed with that statement.

Anywho.  Dominic fights the neck adjustment a lot lately, but he also knows it helps. He's been doing this weird neck thing trying to adjust it himself for a few days, to the point we knew he was probably in a lot of pain.  he actually put his shirt over his head ala beavis and butthead when he sat in the chair.

I thought he was a HOT MESS, way worse that he'd ever been.  Per Doc, nope, actually better - he was no longer flinching away when just touched, and he wasn't as badly out of alignment as he has been in the past.  He relaxed into the adjustment.  The sensory avoidance is fading fast.   Doc is over the moon at how well he's doing.

While it makes me so sad to think that he's been hurting so bad that the simplest touch sent him into super pain, I'm incredibly grateful we've finally found something that is reducing his inflammation to the point that his body is healing and coming back into balance. Its so disconcerting to see him do this neck thing. I gave him an extra dose of CBD today to hopefully get us over the hump.

~~~~

In other news... this was my facebook status last night

We bought one of those FIR saunas at autism One, primarily for Daddy because he is cold a lot due to medication. We let Dominic try it once a few weeks ago. It lives in the master bedroom closet which is between the bathroom and master bedroom. Our pattern for bedtime is to sit on our bed and supervise the shower from hearing range as Dominic usually needs help dispensing shampoo and conditioner. So tonight I was laying in bed surfing the internet and telling him to get in the shower and he was talking to me. And I was not hearing water running. And I finally got up and found him sitting in the sauna in his underwear, sweating.    He'd been there a few minutes.  He did it spontaneously and independently.

Monday, July 24, 2017

~~2 month PMB-aversary~~

Today is 2 months since we started giving Dominic this amazing hemp oil. As I believe I've mentioned multiple times, this is the 6th type of Hemp oil I've given to Dominic (Fun Fact, a pharmaceutical  company in England has a global patent on the acronym CBD, so you'll really just usually see me refer to it as HEMP.  Same thing).  This is the first that has really helped us.  Here's what we've seen this month:

An actual awareness of the amount of time passing, that I've never seen in him before.
Playing with his peers instead of alone ...
Reduction of routine rigidity. (say that 5x fast)
Change in his sodium cravings (still blown away by this)
He passed a swimming test at the Y!!!!!!
He made a friend, with a peer, his age and grade...  without parental intervention.
His communication is going through the ceiling - both receptive and expressive..
He has learned how to use a waterpik for his teeth and is using it daily.  Sensory boy is allowing this!!!
Cognition and independence! Multiple Examples!!
And he blew away his long time OT, Jonny the other night too.


In general, I really feel like the Hemp oil, because if its delivery method, is our missing piece to heal Dominic's brain injuries.  In seeing what its doing with other kiddo's that have started since we did, I'm seeing that it may be pretty adaptogenic, that when the CB2 receptors are cleaned out and cellular communication is reestablished, these kids start to come into homeostasis.

Our pattern with this supplement is similar to what we saw when we started the Ioncleanse by AMD (which, yes, we are still doing.  The IC is our foundational protocol because D's PON1 pathway is full of mutations so his body cant move things through) - we started seeing little things at first and as the weeks go by the little things have gotten much bigger.   There's an interesting synergy here and i'm not sure how it will play out long term.  In the mean time, we're going to keep on going!

Friday, July 21, 2017

Fix it



After I picked Dominic, Timon, and Pumba up from camp today, and we got home, Dominic came straight inside and said "Mommy, fix it", with Timon held tightly in his hand.  Almost as if he were holding him together.


He was.

Timon had popped a seam, and Dominic took me by the hand to my sewing machine that, when closed, doubles as my bedroom catch-all.  he uncovered the machine while asking me to fix it.  After a failed search for a needle (this was NOT a machine job), we ran to the store to get one, came home, and he helped me fix it.

These glimpses of normalcy are so astonishing.


Here's Timon...



Here we are deciding what to do. I cannot get over how attentive and present he is in this video:


Then he helped me sew it up.





... just another day over here in recoveringland.....







ITS HAPPENING!!!!!!

Last night... 

Its been about 5 weeks since Dominic has gotten OT because we've had scheduling issues, people have been in and out of town, etc.  So last night was the first time we had seen Mr Jonny in quite a while.  To say Mr Jonny was gobsmacked is an understatement.  We were doing some evals, so we went to Jonny's office.  this is how it went down.

We walked into Jonny's office and Dominic spontaneously tucked his Timon and Pumba animals into my purse and zipped it up, then he sat down at the table and proceeded to pull tiny dice out of theraputty while Jonny and I talked.  When Jonny asked what's changed, I called Dominic over to me, had him sit in my lap and massaged his neck - something he would NEVER have allowed 2 months ago.  Then Dominic noticed an hourglass timer in the window and wandered over to play with it.  Jonny asked him, once, over his shoulder to go put the theraputty away.  And he did.  Then they did a standardized test to attempt to see where he is age wise (i'm excited about this, the last one of these on file has him aged at under 5, if memory serves. I want to say 3, but I might be getting it crossed with speech, which reminds me when Miss Sarah comes back off maternity leave, I need to ask her to do a speech eval.  SQUIRREL) and I'm anxious to hear the scoring. Dominic ROCKED the tasks I saw him do on it, so we'll see what comes.

At the end of the session, These were the improvements Jonny and I agree have come into play since we added PMB Hemp oil May 24:

- Reduction in tactile avoidance
- Reduction in sensory seeking behavior
- Increase in processing speed, specifically auditory
- Increase in conversational back and forths (lots of work left here, don't mistake me)
- Tremendously more present, in fact both Jonny and Hannah mentioned that in Dominic's recent pictures, he just looks very THERE.
- huge increase in focus
- huge increase in fine motor control

~~~~

This morning.

He got all his things together and we left for camp after breakfast.  I thought he was verbally stimming, because he kept saying "Timon and Pumba" (the names of his current favorite toys), and i just proceeded with letting the words flow through my head.  We got about 2 blocks away from the house, he very clearly said "STOP CAR".  So I did.  And then he said "Go home timon and pumba".  I asked if he needed to go back to the house and he said yes.  When we pulled back into the driveway, I told him he needed to hurry and sent him inside.   The boy RAN to his bedroom, grabbed his Timon and Pumba and was shoving them into his backpack as he ran back upstairs, looked at me and said "hurry".  And then we went to camp.



Wednesday, July 19, 2017

A Tale of three pairs of shoes....

Setting the scene:  Its monsoon season here in Colorado.  What that means is that its HOT during the morning and early afternoon, and then thunder storms blow in and we get anywhere from 1/2" of rain up for a few hours.  Its wonderful.  And our duck pen has a tarp covering over the top to give them some shade during the day so that tarp accumulates water on it, which Dominic sees as his complete responsibility to remove.  This means he takes a stick, pushes up, and sheets of water come down.   This morning ... i was standing inthe wrong place and had to put a dry shirt on. Ooops.

Anyway.

After Breakfast, Daddy was getting ready to take Dominic to camp and we noticed he was wearing sandals with socks.  When not terribly long before he had his sneakers on.  Thats weird.  I asked him to put his sneakers back on because camp requires closed toe shoes and he did with zero complaints.   Then we reaslized the sneakers were wet.

Wait.  Backup.

you mean he got his shoes wet in the dumping of the tarp water, independently changed shoes, and went on about his day without issue?

huge shift in independence and cognitive processing.

I'm not done.

So we noticed the sneakers were wet and told him to go ahead and put the sandals back on. I remembered my friend Kristin had sent us some van;s that were probably WAY too big (mens 7.5) but I went digging for them anyway.  They're the same sole length as the size  nhigh tops.  Which is fortunate for today, because I had Dominic take the sandals off AGAIN and put the completely new to him shoes on his feet. 

And still no issue.

I don't even have language to tell you why this tiny little detail is so HUGE, just trust me when I tell you that it is, from a reasoning, an independence, and a flexibility level.  SO AMAZING.

Though we're going to need to break him of the desire to wear socks with those sandals... gotta get rid of the tan line somehow....

Monday, July 17, 2017

Waterpik... no really...

So, I've been spending a LOT of time helping Dominic clean his teeth since he got braces.  Its been with one of those rubber tipped gum line cleaner tools, mostly, and he's tolerated it just fine.  I decided to attempt to teach him how to use a waterpik.

Night 1 was Saturday night.  He didn't like it..... he cried.  I had to hand over hand.  WE got about 10 seconds of picking.

Night 2 was last night.  he burst into tears at the sight of it, and pursed his lips and refused it.  So I walked away.  no harm, no foul, i wasn't going to push him so far I traumatized him.  Out of the corner of my eye I saw him pick it up and start playing with it, so I went back to show him the off button and mimic what I wanted him to do.  We got about 30 real seconds of picking.

Tonight... night 3.  This happened.
Actually we were already about halfway through when i decided to grab my phone and record it....




this Hemp oil is a total game changer.  email me using the link on the side if you are interested in more information  or just click here to order. 

Sunday, July 16, 2017

Things that make me go hmmmmm

We are to the point in Dominic's recovery journey that I am keeping a very close eye on changes and pattern. Because it's those little changes that are the signal that something larger is coming down the pike.  I have a couple of anecdotes to share with you today they're different and it is my hope that they are signaling a big shift that is coming down the pike.


Last night daddy and I went out to a party on a date. Tim stayed home and hung out with Dominic, and when we got home Tim told us that he did  shower time entirely alone. Normally I come downstairs and I am in within ears reach and end up giving him shampoo and conditioner so that he doesn't pour it all down the drain.  Tim said he sent Dominic downstairs to take a shower, and Dominic came back upstairs clean and in pajamas to say good night. No big deal.

This morning I asked to Dominic to go eat his lunch in another chair because I needed to have a footbath in the chair he was currently sitting in. He took his tray table with him and that was appropriate because his lunch was there, so I planned to eat my lunch with my plate on my lap. Not a big deal he's messier than I am usually. So I get my bath ready, I got my lunch ready I would get myself settled. And the next thing I knew Dominic had stood up, brought the tray table over, set it down, and taken hisbowl back to the other chair. He gave me his table without being asked. It was incredibly considerate to and demonstrated and an awareness of his environment that I am not certain he has had before.


And the last example comes from tonight. In order to explain it to you I need to give you a bit of a history lesson. Dominic goes to camp Monday through Friday, and they swim Monday through Thursday. Dominic knows he needs a swimsuit and a towel for swimming, but he has not put together necessarily what day it is. I am starting to think he is more aware of what day it is than I thought.

The second part of this history lesson is that Dominic is perpetually losing his small toys that he fidgets with. Perpetually, we will need to find one or he's lost one or he's digging for it.

Tonight, he did his usual and put away his stack of laundry that was in the laundry room and then I became aware of him shufflings through the hamper. You look up at me and said with a question his voice, "camp?" To which I said yes you have camp tomorrow. And then he kept digging in the family of the laundry hamper. I said "Dominic, what are you looking for?" And he said "suit".  I said, "oh we should go find that". We went to the laundry room but I couldn't find it in the stack. I went to his room and I didn't find it there either. I realized then that it it got tucked into the area where we keep dirty towels before we wash them in the laundry room. The suit had not been washed.  Oops.  it's in the laundry now.

So here are the skills that he just exhibited with that exercise: he realized that tomorrow is a day he's going to camp, he realized then that he needed to make sure he had his swimming suit, then he couldn't locate the suit so he knew he needed to tell me so that I could find it for him. He is making cognitive games like nothing I have ever seen.  this is a logical path of thought.  

#primemybody
#ioncleansebyamd
#whatjusthappened 

Friday, July 14, 2017

A Friend.

One of our greatest desires for MANY years has been for Dominic to make a friend that he could hang out with outside of whatever environment they were in (school, camp, mommy organized play dates, etc).  He's 12.  This has been hard on our hearts for a Long Time.

Tonight when I picked him up from the YMCA day camp this happened.

An older boy, 12, came up and asked to speak with me.  I listened out of one ear while doing sign out and asking the counselors to retrieve Dominic for me.  this is how the conversation went:

Him:  "My name is Giovanni.  I have come to this camp for 6 years and its my last year.  I have hung out with Dominic every year.  I watch him and when the other kids pick on him, I tell the counselors."

Me:  *trying not to cry* and now also giving him my full attention

Him:  "Today is my last day staying with my Grandmother, I have to go home to Arizona now, and can my grandma have your number because next year I'm too old to come back to camp and I want to see him again"

Me:  "Of course"!

Him:  "Dominic did the sweetest thing today, he gave me a hug out of the blue"

Me:  "he's a sweet kid"

Him:  "I'm going to miss him"

Me:  "we will make sure you guys get together next summer"

And then Dominic gave him a big hug before we left and i about melted into a pile.

I really wish it had occured to me to give him my email address so we could've had the boys email each other, but I was so flabbergasted at what was happening I wasn't tracking well.

this is the culmination of so much work - all the years of therapy that allowed Dominic to learn the proper way to interact ina  group, the hundreds of thousands (not kidding) of dollars in treatments over a decade... the iep's, the supplements, the research, the tears.  It took us so much to get here and I am so excited to see where this goes.  Of course, we probably won't hear from him soon, but i'm hoping!

Thursday, July 6, 2017

from the #whatjusthappened files....

History lesson time:
Dominic has gone to summer camp at the YMCA for 5 years straight.  He has always absolutely loved the pool, and the swimming time.  The Y has rules, tho.  rules about swimming ability and such.  Children have to pass swimming tests, and if they don't, they are stuck in the shallow end.  Thats where all the really little kids always are.

I have been confident that Dominic was drownproof for many years.  Actually when my parents camped here 4 years ago, we threw Dominic in the deep end of the pool and he popped right up and made his way to the surface.  (it was to show the drown-proof-ness off).  These pictures are THAT old.




So.  A few weeks ago, the staff at the Y camp asked if they could do the swimming test so he had more of the pool to play in, could go down the slides.  I was absolutely fine with it.

Today, his counselor told me he got his Blue band, which means he swam half of a pool lap without his feet touching the bottom.  It wasn't graceful or pretty (and it didn't need to be).  And she told me "he is a REALLY good floater).    She wants him to get a green band, and for that he's got to swim the whole length without touching. And she committed to keep working with him, estimating he will have it in a few weeks.

His auditory processing speed has been such we haven't been able to make him understand the concept that he needs to do this so he can earn deeper water.  He hasn't been at a point where staff would even consider attempting it.

This. Is.  Huge.  Its from a combination of Detox, Hemp oil and genetically appropriate supplementation.  It is not just one of those, its all of them working together.

Monday, July 3, 2017

Salt...

Dominic loves salt. He's loved salt since he discovered it years ago.  It was when he regressed, though, that he started to need salt.  He would quite literally pour salt in his hand an lick it.  we joked he needed a salt lick.  When we did hermetic homeopathy, one of the things she said was that autism was about the sodium channels in the brain and they weren't working right.  Her remedy didn't change Dominic's salt licking habits, tho.

Tonight, we picked up chicken wings for dinner.  He literally stopped eating them (they are his favorite things), made a horrid face and got a huge drink of water.  Daddy said "was that too salty for you" and he said "yes".  This is the first time, in his life, that ANYTHING has been too salty.

#whatjusthappened
#primemybody

Add clearing up sodium channel issues to the list of things I was not expecting to happen.  To me this means that as his CB2 receptor sites are opening up, he is able to more efficiently use sodium, which means his body now has a limit.   This may also mean that as his cb2 receptors continue to open up, he'll be able to more efficiently use other nutrients too.  The possibilities are super exciting.

Facebook posts from the last few days or so...

June 30 (so a field trip followup)
"Makes me so happy to have half a dozen different camp Counselors pull me aside at pickup and tell me how amazing Dominic did. Apparently he requested and rocked out the ropes course ...."

July 1
"Doctor who marathon today - and we watched the finale. Dominic blew us both away at one point - he emphatically said "pause it"'and went up stairs. A few minutes later he came back down with the biggest smile either of us can remember seeing on his face - truely ear to ear - holding a bag of potato chips. When we compared notes after he went to bed we both used the word "pride". He was so stinking proud of himself. 💜"

~~~~~


Friday, June 30, 2017

Breaking routine - shall set you free


For many years, I’ve told every mom of a newly diagnosed child who has asked that “Routine Shall Set you free”.  Our kids do much better with structure and sameness in daily routine.  They struggle when things are out of routine. This is all fine and wonderful for those years where we are slagging through trying to just put one foot in front of another and keep breathing.  And there are a lot of those years in autism.  All you want is calm and peace, nothing matters but averting the inevitable meltdown.  Avoiding meltdowns is very important, but using routine to do so has a drawback, and that draw back is the tendency of some (well, most) of our kids to become ritualistic and inflexible.   The challenge then becomes bending, and adapting that routine when they are to a point that its appropriate.

So, why am I telling you this?

We are bending and challenging routine around here.

Our normal evening routine, when we have family TV night, is to have Dominic do his footbath, eat, put the ducks to bed, take his shower, brush teeth, and then pile into bed with us and watch Dr Who or something similar.   Well, we are behind in Dr Who and the finale is this weekend, so we are trying to catch up.  We wanted to start watching a little earlier last night… so here’s how it went down
Dominic had footbath AND dinner
We watched, from the sofa, the first Dr Who of the evening.
Dominic put the ducks to bed (all by himself, I doublechecked to make sure everything was right, but this is now his chore)
Dominic took a shower (we contemplated watching one without him, but when he heard the theme music, he ran naked into the living room to order us to PAUSE IT)
Dominic settled on the sofa with a bag of tortilla chips while we ate a pizza (he didn’t even try to sneak any, either, which was huge) and we watched a second Dr who
Then we brushed teeth and he went to bed.

BIG bending to the routine…

Today, Camp is going on a field trip to the Royal Gorge. Apparently there’s an amusement park and dinosaurs.  Who knew??  Any way, they told me yesterday that we needed to not bring his backpack, because they couldn’t have it in the park.  Dominic ALWAYS has his backpack near him, he does NOT like to take it off.  The lead counselor actually told me that she knew he’d want it with him so if I couldn’t get him to leave it at home, they’d have him leave it on the bus.  That’s just asking for a meltdown. So I started prepping him last night  that we’d leave the backpack at home and only bring lunch and water bottle.    I had to drop him off early this morning because they were leaving at 730am and I had a meeting at 7 – so we got up an hour early and dropped him at 630am.  This is how the morning went…

I took a shower, was getting ready when  I heard the house alarm go off.  I ran to turn it off, and Dominic came downstairs holding the keys saying “Mommy, feed baby duckies”.  He had unlocked the back door and was attempting to take care of the ducks. ( This is why we have a house alarm, btw.  I recommend it, its $40/mo for peace of mind.)  I finished getting ready, we fed the ducks, he had his breakfast and put his lunch in his backpack.  I had to Strongly Encourage (but there were no tears or melting down) him to take the lunch and water bottle out of his bag and leave it here.  He DID.   He is now on a  field trip WITHOUT his backpack.  This is the first time ever he has gone to either camp or school without a backpack...

 
And he is smiling about it!!!!

 
That is his lunchbox.  We love it, its got the freezer packs built in so there's no need to add an ice pack. 
I know these seem like small things...  and I want you to know how HUGE they really are... 
Ps… following up on my last blog post, when I picked him up from camp yesterday, Dominic was happily playing tag (backpack on) with another child.  There are multiple other spectrum kids there and the counselors related a story to me about how Dominic knows the rules and, ahem, encourages the other kids (spectrummy ones) to follow them. This looks like him walking with them and telling them no apparently.   This amuses me significantly.  I am so glad we have a child who fixates on making sure rules are followed.   
#ioncleansebyamd
#autismrecoveryclub
#primemybody

Thursday, June 29, 2017

Absolutely gobsmacked



We have had SO MANY little things change for the better with the addition of Hemp Oil to Dominic’s regime that I’ve been having to pinch myself every day.  This week, tho we have had a big thing.  I need to give you a history lesson before I tell you about it tho…

Dominic has been going to the YMCA day camp during the summer every summer for the last 4 years.  It has been both wonderful for him to have the exposure to neurotypical kiddos in a structured and supervised play setting AND a huge challenge for him.   We drop him off after breakfast, usually by 8am, and pick him up usually around 5pm, so he is there ALL day.  Drop offs the last 4 years have looked like us taking him to the gym, signing him in, and kissing him goodbye, after which he wanders off with no general focus point.  Pick ups, literally EVERY time for YEARS have had him watching and waiting for us – either standing at the door of the gym, or outside at the pavilion with his backpack on. Always on.  We have heard about his day only really from counselors, who tend to want to sugar coat how is day has been and there’ve been several summers that things have been really hard.  

The backpack is key, I don’t know if he’s using it as a security thing, or what, but he ALWAYS has it on.

Tuesday of this week, when I went to pick him up, he was not waiting for me.  My heart did a little leap because of course the first  place my brain went was that he’d eloped and was gone.  Nope. He was up the hill playing chase.  With other children.  Spontaneously.  I was gobsmacked.

Yesterday, when I went to pick him up, same thing, I couldn’t find him.  I did locate his backpack, sitting on the sidewalk by a counselor.   He was HAPPILY playing on the playground with the other kids.  

This morning, at drop off, I asked the counselors what else they are seeing that is different all the sudden, and when it started (I was trying to figure out if it’s the hemp oil, the mito sup we started over the weekend, or solar flares, or what).  They advised that it started middle of last week (HEMP!!!!) and has been increasing every day.  What they are seeing is him seeking out other kids to interact and play with, him being more comfortable in his skin, etc.

Daddy reports that drop offs Tues -Wed of this week were sort of like this
-          Tues at Drop off, Dominic Immediately went for a toy, Rod called him back for a goodbye kiss, a little girl started moving to the toy he’d selected and he went back ot get it.
-          Wed at drop off, same scenario, he went straight for a toy, and Rod called him back… this time tho, when the little girl went to the toy, he let her with no issue.
-          I can tell you that this morning at drop off, he went for a toy and a group of kids and really really wanted me to leave as I was visiting with the counselors.

So, until I asked the counselors their view on timing, I wasn’t exactly sure whether this was a feature of the hemp, or the mito supports or something completely unrelated to protocols like solar flares.  I am now leaning towards hemp prep’d his CB2 receptors and started the shift, which was then amped up by the mito supports (cellular communication is THE BOMB).

So this particular hemp is found here, and you can read other blogs about it here. (over the years we've used 5 other brands of hemp and none of them have done anything. This is the first LEGAL cannabis product that has had any effect on Dominic's brain inflammation and immune function.  What i'm trying to say here is don't get a cheaper/different brand and assume it will do what this one is doing for us.  None of the others we've tried have done this)  This company is an MLM, fair warning. You can absolutely sign up as a customer, you aren’t required to start a business to use it.

The mito support we’re using is one that D muscle tested for at our Chiro’s office a few months ago.  After we finish trying this one, we’re switching to Dr Shade’s The One (Dr Shade is the one who created the  hemp oil and this supplement is formulated to be complimentary to the hemp so thats exciting), and after we try that, we will switch to Mito-vive from Metagenics.  After we’ve tried all of them,we will pick the one he does best on…
 

Tuesday, June 27, 2017

"Mommy, minutes?"

Backstory - our speech therapist who Dominic adores just had a baby and is on maternity leave.  It didn't make much sense to get him someone else just for a few months when he takes that long to warm up to someone anyway.  So this summer we've started him back on gemiini just to keep him practicing articulating and such.   He doesn't love it. at all.  He would far rather watch disney videos on youtube.   So we lock that ipad down to just the gemiini and he has no choice what he watches.

Last night, after his footbath, he got the ipad.  I told him that if he did gemiini for 10 minutes, then he could do what he wanted on it.  I set gemiini, and went to the kitchen to cook dinner.  I didn't look at the clock. 

A while later, at least 10min, but potentially more (again, i didn't check the time), he came in saying "Mommy, clock.  Mommy, Minutes".  He wanted me to look at the clock and see if his 10 minutes were up.

Wow is all i've got.  This protocol we are on is doing cognitive things we've never hoped for, much less seen.