Wednesday, December 6, 2017

Catch up post

Because I am way behind ...

I've been busy and we've had computer issues, so  between those I haven't been able to post since the Hockey game.  Here's what I have to tell you.

~ Dominic loved that hockey game so much that every day since he has repeatedly said, in the tonation of a query "hockey, soon?".  It got to the point that his teacher wrote down what day the hockey game was in his school planner and he's been checking days off.  We have tickets this weekend. I am seriously considering season tickets next year, he's enjoyed this so much. 

~At the IEP a few months back, we put Dominic into choir to encourage him, because he was always humming along with his movies.  I completely forgot about  it until we got a note home a few days ago saying that his winter concert is the 13th.

let that sink in.

Dominic will be taking part in winter concert.  And yes, he will have a support person.   I don't know what to expect, but I bought him the outfit (black dress pants, white shirt, black shoes) at target the other day, so we're a go!  In related news how is it possible that he is wearing a mens size 8 shoe??????


~ home based Speech therapy continue to be wonderful.  Last night he did the best he's ever done for her identifying the sounds of letters (building block to reading) - he got 16, and his best before that was 12.   Every speech session, at the end, I have to sign Sarah's ipad so that she gets credit for the visit.    At one recent session, she said to Dominic "Take the ipad to your mom so she can sign it", and look what i got handed....




Sarah has a sweet little 6month old and sometimes due to scheduling, she brings him along and i get to play with him while she does therapy. Dominic likes to hang out with him too (and yes i had her permission to share this pic on social media)




~ Thanksgiving was pretty low key. We stayed at home and didn't have company.  The week off from school, tho, made apparent that puberty is here.  The sass out of this child is amazing given that his verbal skills are still pretty low.  We're all working together to provide consistency in environment and routine, and hoping that will help. 

~ speaking of puberty, I think we are nearing the stage where our grocery bill is going to be ridicuous. I bought a costco size package of organic sausages a few weeks ago (so there were 15), and cooked them in the oven. Dominic came home from school and i told him he could have one for a snack before we went out to OT.   I was rushing about and not paying attention (critical error there), and got us out the door, we did OT and we came home and I went to have him eat another ssausage before ST at home... and there were only 8 left.  I checked with Tim. He didn't have any. They weren't accessible by the dogs.  Dominic ate 7 sausages for a snack.   So...

~ Because daddy is now working full time, I'm taking the entire school winter break off work.  That will be the longest vacation I've ever taken, and I'm excited. I am also hoping that said sass and puberty don't make me insane. 


Monday, November 13, 2017

Hockey

When you have children, you assume that you will at some point get to share the fun things that you do in live with your kids. You assume that you will, as they mature, be able to play and enjoy life.  When you have a child with special needs, that assumption goes down the drain. In my eyes, that’s one of the biggest tragedies about the surge in disabled children that we see in todays society.  And if you don’t have the experience – its very hard to wrap your head around the true social isolation that comes with a disabled child.   There’s absolutely a financial component to this on top of the actual inability of these kids to do STUFF – respite care (a fancy way of saying babysitting in the special needs world) is anywhere from $10-$20 and hour and up.  The kids might be runners (who wants to put their kid on a leash just so they can go out?  So much judgement and side-eyeing by everyone elses)… they may be too sensory aversive to deal with crowds and noises… they may not have the actual ability to sit for more than a few minutes, they may be inappropriately noisy, they may be violent to themselves….. they may smell bad because they’re not potty trained, etc….   If you don’t live it, you cannot possibly imagine how soul-crushing it is to have a child who cannot be taken in public without serious ramifications. 

Most of you who have known me for a while know that when I was in College, I learned to really enjoy college hockey. I like hockey specifically in person – not on TV.  There’s something about the energy of the crowd that I really enjoy.  For the last 12 years, we have gotten childcare and gone to Colorado College  games a few times a season.   About a month ago, I floated the idea to Rod of bringing Dominic along to one of the less attended hockey games to see how he would do.  That arena is crowded, loud, echo-y and we really weren’t sure if he could handle it.  After talking about it for a bit, I bought tickets for the whole family to attend the game this previous Saturday night.  I think we both expected Dominic to manage for a bit and get bored and want to leave. 

We started the evening with a family dinner at Dominic’s favorite restaurant, and the only place in town with a gluten free fryer dedicated to French fries – Red Robin.  With the game starting at 6pm, we figured we wouldn’t have to wait at all and would have the opportunity to completely stuff him with fries.  What we forgot was it was veterans day – and Red Robin was giving away free meals to veterans. Ooops.  We waiting a solid half an hour to sit, and had no phone signal to let Dominic play with youtube while we waited. Oops.  He got squirmy and wanted to leave.  It was not a good sign on how the game would go. 


We finished our dinner, and made it to the arena in time to see the warm up.  We had relative good seats – strategically I wanted to sit as close to the ice as possible so that there were fewer people in front of us in Dominic’s general field of vision.   So we go to see pucks up close and personal J .  Every time a puck hit the glass, Dominic hooted “OW!!” and laughed maniacally.   What I’d worried would scare him, he found hilarious.



Very shortly into the game, I posted on facebook  “Might have underestimated his love of screaming”.  Because he CHEERED, he clapped, he screamed at appropriate times… it was so cute to watch.  At the end of the first period, it was apparent that he was loving it, and I bought him a shirt.  Here he is practicing his Tiger Roar (the mascot of the Colorado College Hockey game is a tiger).



At one point I looked at him and found him in classic sports watching pose, with his elbows on his knees intently watching. 



We figured we were home free at the game and what was left to determine if we would repeat the experience was how well he wound down when we left. Because he was AMPED up. 

CC Won!  There was much happy screaming.  WE came home, it was around 8:30 – put the ducks to bed and Dominic asked to watch Dr Who.  So we watched a Dr Who in mommy and daddys bed until his eyelids were super heavy and he passed out in his own bed not terribly late for a weekend.  WIN!!!!

I am so proud of how well he did, and so proud of the work we have done to help him get to this point.  So today, I’ll be buying tickets to the Big Game  - CC vs DU, in a few weeks.  And he will wear his new shirt and we will have a wonderful time.  As a family.  I cannot communicate to you what an exquisite treat it was to actually do something FUN like this as a family.  It was an indescribably large step for Dominic and us.  I am incredibly grateful for the path we  are on and  the supports that are making such a difference. 

 

Friday, November 10, 2017

Lots of gains

Time Change week, and a  couple of weeks worth of updates at once

 


I was not planning on it, but at the last minute decided to take Dominic trick-or-treating. It’s been many years since we have attempted this and so at the last second I grabbed all of the Dominic safe treats from the kitchen and preloaded the neighbors with them. Then we went and we trick-or-treat it at for houses. It was no big deal. I am blown away


This week with the time change, Dominic has been all over the place – from absolutely refusing to work for his Occupational therapist, to spontaneous playing with a peer in a waiting room and firsts in the kitchen…  The time change weekend has also guaranteed that now we always have first dinner (when he walks in the door) and second dinner (closer to 630)… and sometimes third dinner.  Daddy and I are starting to have discussions about the pro’s and con’s of discouraging the third helpings.  We may go broke feeding this kid through puberty.  

 

So – 

 

I didn’t share these with you guys, but I shared them on facebook last Friday night because the event made me LAUGH so hard.  Dominic and I were watching Food Network and he watched and rewatched thse two (back to back) commercials at least 10 times.  His … commentary … is hysterical. 




 






Monday, as I was putting Dominic to bed, I found this scene in his room.  Mind you, I put away all the Halloween stuff over the weekend, so at some point he hid Skelly.   I am amused and so I’m going to leave Skelly there and see what happens over the year. 





Tuesday at our OT appointment, a little boy approached Dominic in the waiting room and asked to play.  Now this kiddo and Dominic work together in therapy for social skills, so it wasn’t like a stranger asked – but it was in a different environment, so we’re calling it generalization.  (I got permission from his mother to take this picture).  Then Dominic proceeded to absolutely refuse to work for the duration of his therapy session, which repeated itself at our therapy appointment Wednesday…




 

Thursday morning, Dominic made his own fried eggs, with just verbal cues and minimal hand over hand support from me. So this morning, I videoed him doing that.  It’s a long video, but he did almost everything himself, needed a smidge of support with one egg (duck eggs are HARD SHELLED).  Very proud of this. One of our biggest goals is around ADL’s (activities of daily living) and ensuring that Dominic will, at some point, be able to take care of all of his ADL’s on his own.




 

Thursday evening, he had speech therapy with Sarah, and he did something I’ve never seen him do, although she told me he did it once before for her.. here’s the text back and forth with Daddy describing it.  It was very cool.  She also told me he did the best he’s done for her with focus.  One of the biggest challenges we are having in getting him to read is that he glances at the page really fast and struggles to focus on it. The increase in focus gets us more reading and better answers.  One step at a time. 




 

A year ago – even 6 months ago -  I am positive I wouldn’t have had even an inkling we would be where we are now.  The combination we are using: Ioncleanse by AMD footbath for a foundation (which reminds me, he needs a footbath today), genetically targeted SNP support for his specific mutated pathways, mitochondrial support, a nootropic for his cogntion, and Prime My Body Hemp oil for cognition, speech, sleep, anxiety, inflammation, and autoimmune… is making a HUGE HUGE difference.  I have some other things that I want to play with, namely camel milk (will probably do that over Christmas break from school) and antiviral herbs, but I want to go very slowly because we’re in a good place and I don’t want to overturn the applecart.

 

Saturday, October 28, 2017

reading and visual attention, oh my!!!

Backstory:
I am a book worm. I have always loved reading and use fiction as escapism.  That makes this particular facet of Dominic's disability very difficult for me because he is illiterate at 12.  When I was 12, I was reading Gone with the Wind.

Dominic's visual attention span is very short. We've been working in occupational and speech therapy both for many years to increase it. Its very hard to deprogram a word when you glance at it only for a fraction of a second.  So we work on it all the time.  School has of course also focused on it (he's in 7th grade right now, so thats 9 years of school attempting to teach him to read, too)

What happened this morning:
Dominic was sitting in the living room with us, when he, out of the blue said "Reading".  Daddy and I  looked at each other, and then at him, and told him to go get a book and bring it up and read it to us.  He disappeared to his room for a significant while, and when he came back upstairs was holding a tiny little board book, one of the ones you use with a very little person.  I don't even remember where this one came from, its been so long since we got it.

He then sat in my lap and we went one word at a time through it. about 10% he knew on his own (the, and, of...), and the rest i had him repeat after me.  he focused on the whole book.  Well, i wanted a recording. So i sent him across the room to read it with Daddy.  He did better for me than Daddy, but here's that video. He focused, he stayed engaged for the entire time and he answered a bunch of questions at the end. He WANTS to read badly at this point.  We are SO CLOSE.



(purely for my own records, today was day 1 of our pulsing back in PEAPURE in combo with PMB.  Dr Bradstreet was seeing great things combining CBD and PEAPURE before he died, so we're going to give it a whirl for a bit as I have a box of peapure leftover I don't want to go bad)

Wednesday, October 18, 2017

IEP, check

Today was our annual IEP meeting with the school. This is where we touch base about how Dominic did on last years goals, and write new ones for this year.  

This is hands down the first IEP we have EVER sat in (and mind you its about the 9th one we've been in) where the first 25 minutes were spent with everyone raving about the progress Dominic has made.  Usually that part is about 3 minutes and consists of how much everyone likes Dominic.

A couple of the stories stood out for me, because they are really cool

- Dominic's teacher was being supervised for a next level license of some variety and her supervising teacher was in the room observing for awhile. Dominic got up, walked in front of this person and said "Strange.  Leave". 
He recognized that a stranger had no place in the SSN (significant special needs) classroom.  And he told her.

Apparently she didn't leave fast enough because he spent the next 25 minutes repeating "STRANGE, LEAVE" and finally got up and stood right near her and said "LEAVE".  She looked at the teacher and said "I'm sorry, I didn't realize...." and the teacher said "You should probably leave...."

- In speech therapy group session last week, Dominic knew the answer and another child didn't. So he answered for her. VERBALLY.

WHAT????

Apparently he does this All The Time in his regular classroom, to the point that his teacher actually has to tell him to be quiet. 

WHAT?????

- Routine, routine, routine.  Dominic's has been a hot mess all school year because they are experimenting with schedules.  The most recent routine change is that now he goes outside to recess before he brushes his teeth after lunch.  He apparently missed recess the first day because he was trying so hard to brush his teeth.  Oops.  Second day, he had it down pat.  His teacher writes out his schedule (no more PECS for us!!!) and he has to follow a written schedule. 

We decided to put him in choir, to see how he does.  So that will start tomorrow.  We also decided that we wanted the main goals for the classroom academics to be reading based and for his math, to make that money based.   Making the choice to move to more practical life skills...

We've also added a social work goal back in to work on creating intentional friendships with peers.  (this was at our request)

No later than the beginning of second semester, the school will be instituting a peer mentoring program with the 8th grade leadership club, those kids will be mentoring in some way (we will see how it pans out...) the SSN kids.  I've been asking for this for a number of months because I believe that Dominic wants friends.  And without the language, he struggles hard to make them.  He is also incredibly susceptible to the form of bullying that goes like this: "If you do X, I'll be your friend" and we are not going to allow that to happen.

Overall, one of the best IEP meetings we've had.   The school based speech therapist, who has worked with him off and on for many years and knows we are using PMB hemp with Dominic, is ECSTATIC (as in she was nearly in tears at his progress) and told me that she's blown away.

And here's a completely unrelated picture.  Dominic really likes to "make mommy's tea" in the mornings.

Friday, October 6, 2017

Hello spontaneous task initiation!

The way I look at Dominic is that its my job to create a functional, independent human being.  Most days I honestly wonder if I'll be able to do that - between safety issues, communication issues and a seemingly never ending repetition of the basics, most days I try not to think about his future. I stay firmly in now.

Backstory #1:  These ducks... while Its Dominic's job to let them out and put them to bed... I haven't been able to get him to give them feed/brewers yeast (ducks have a high niacin requirement, go figure), so I do that.

Backstory #2: I do very few processed foods in this house and Dominic eats gluten free oatmeal every morning, usually with honey and raisins.  He's pretty rigid about this and after getting the cutest little oatmeals in cups from the Autism Hope Alliance at conferences, i decided to order something similar from amazon in an effort to expand his palate.  You pour boiling water over them and let them sit for a bit.  I do this every morning, along with 3 fried eggs, for his breakfast

I am moving slower than usual today because I'm not feeling good and by the time I got outside, Dominic said to me "Mommy, Ducks, Breakfast" and pointed.  He'd gotten them food and given them their brewers yeast on top.  It wasn't quite enough so I had him add some more.
No. Big. Deal.

(?!?!?!?!?!?!?!)

Then we come inside and for the first time, Dominic picks out his preferred flavor of oatmeal.  I set it on the counter, next to the kettle thats almost hot, and go to the bathroom.   I come out and Dominic's already added water to his oatmeal.

(again... ?!?!?!?!)

We've got some serious initiative and independent activity happening in the ADL (activities for daily living) world...  And I attribute that to the combination of the IonCleanse by AMD footbath, and PrimeMyBody hemp, plus genetically appropriate supplementation. 

(of course, we're balancing that with the never ending sassiness that comes from 12.  Puberty may kill me)




Saturday, September 30, 2017

Month 4, hemp oil

I totally forgot to write a monthly post for August, month 3, so this will have to suffice for both...

We made it through YMCA camp, and it was Dominic's last year.  we're currently brainstorming ideas for next year as he's aged out of the day camp.  Top of the list is the idea of a nanny/companion for 4-5 hours a day while both Mom and Dad are working to do things like hiking, swimming, the zoo, etc.  Someone to keep him safe and help him have fun / be active instead of him sitting on the ipad all summer.

The transition to school was rough. It was a combination of the teacher actually expecting him to do academic work and the solar eclipse which threw him into an inexplicable funk. If I hadn't seen every other child I know of on the spectrum equally thrown off I wouldn't have believed it.   We have finally gotten into a groove where the comments coming home from school are positive.

His sense of self awareness is sky rocketing, and i'm sure thats partially that puberty has arrived.   He has spontaneously started plucking his eyebrows (just the unabrow part)... he has started using pimple treatment at night... 

His OT and ST sessions have resumed and every single session OT tells me what an astonishing thing Dominic has done.  He's going to be starting social group there very soon (unofficially, they will be able to pull out and do one on one as needed)

the ducks are very much his.  Here he is with new boots just for taking care of the ducks.  He looks so, teenager, here. 




And just to remind us all that he's still cognitively very much NOT a teenager, here he is doing a MIGHTY EAGLE from the movie Angry birds...


This is Dominics little friend Dexter.  I'm teaching Dexters mother how to cook, so they are over once a week on Wednesdays and Dominic and Dexter chase each other. Dominic is astonishingly tender with Dexter, and very much wants to take care of him.




PMB Hemp oil in addition to our IonCleanse by AMD footbaths has catapulted us to a completely different trajectory. I don't know what that is just yet, but I do know that Dominic is doing little things, rather consistently, that have us going "What just happened".

Friday, September 22, 2017

duck hurt

Another one for the #whatjusthappened files...

As you all know, one of Dominic's jobs is to put the ducks to bed at night, and take them out of bed in the morning. It is his special job and he's been doing it since the ducks have had their house. Tonight I sent him out to put them to bed as per usual, and when he came back and he was very concerned and he kept repeatedly telling me, "duck hurt, Duck hurt".

I blew it off as just repetitive speech, until I saw that he actually had blood spots on his arms. I had him wash his hands and arms, and then I had him show me what happened. We went out to the duck pen, I opened up the door and I said "Dominic, go get me the duck that's hurt."

First he pulled one out, looked at her, put her back. Then he pulled another one out, looked at her, and brought her to me. And yes in fact she was hurt. She had a broken blood feather in her wing, and was bleeding.

From our experience in raising parakeets and cockatiels many years ago, I already knew that when you have a broken blood feather you either pull it, or you put flour on it to stop the bleeding.  I didn't really want to deal with pulling a blood feather tonight so we put flour on it. The duck Is fine, Dominic is fine, and everybody worked together.

I cannot emphasize to you enough how remarkable it is that number one, Dominic realized that the duck was hurt. And even bigger he was able to communicate it to me!

This is the kind of thing that would never have happened even one year ago.  

And now - he is repetitively telling me "duck feel better now"



Thursday, September 21, 2017

immediate generalization, wow

Tonight at OT, when we walked in a little boy looked at Dominic and said "Whats up, Dude".  To which Dominic replied with his own "whats up".  It was a glimpse into teenagerhood.

Anyway. 

Jonny and Dominic are working on turn taking in a play setting.  So there's another kiddo/therapist pair that they do this with and tonight they focused on Dominic telling the other kid it was his turn.   Jonny had to verbal prompt at the beginning and by the end Dominic was doing it spontaneously.

Then we rushed home for Speech.

Sarah said to me  "he did the strangest thing, he had me repeat what he told me"

Nice to see the carryover, and wow.  The little things that i've celebrated for so long are now coming so hard and fast...

Sunday, September 10, 2017

Mommy, blanket....

History lesson:  Last winter we had a horrible wind storm that knocked power out for close to 30 hours.  in JANUARY.  This meant we got all the blankets out and cuddled, took sink baths, and stocked up on lanterns.

Its September.  I ran the AC most of the day today because it was Warm.

Dominic was in the shower, and I was putting things away in the laundry room, when the power flickered and then went all the way out.   It didn't come back right away, so i grabbed the lantern (we keep them in convenient locations thanks to last January....) and told him to shower in the lantern light.  He had zero issues doing it.

He got out, got dressed, brushed his teeth, and then came in to me and said, enthusiastically "Mommy, Blanket?".  I said Okay and followed him out to the living room where he proceeded to take the sofa blankets off the couch and to his room.  And put them on his bed.

He remembered that we got extra blankets and put them on the beds last time this happened.    and he used his words to make sure he got his blankets again.  He's going to be all sweaty tomorrow....

(and power came back roughly half an hour after it went out. Our entire neighborhood was dark)

#WhatJustHappened

Wednesday, September 6, 2017

He totally lied...



Back Story - we have a roommate right now and our upstairs shower is somehow leaking and so said roommate is showering downstairs until we can get to leak hunting. Roommate's name is Tim, and Dominic calls him Timmy.  Tim usually showers right after Dominic because he works a very early shift and has to leave the house at 5am.

Last night, Dominic had speech therapy late in the evening and so I fed him dinner first.  He knew he got to put the ducks to bed after speech and then he was going to go take a shower. 
With his speech therapist still here,  I told Dominic it was time to put the ducks to bed and take a shower.  He said "Timmy shower" Which i took to mean that Tim was in the shower and Dominic had to wait a bit.

Until Tim stuck his head out of the kitchen and said "Nope, i'm not in the shower"

And all three adults in the room realized that Dominic had totally just lied in an attempt to delay bedtime. Verbally.  With his words.

Only in the non-verbal world of super literal autism does this sort of thing excite a parent.  I absolutely attribute this to the combination of Ioncleanse by AMD footbaths and PrimeMyBody hemp.  The combination seems to be pretty critical.

Tuesday, August 29, 2017

GMO's, eating organic, and CSA to the RESCUE!

One of the things we learned this summer from Dr McGowin's genetic interprations of Dominic's 23andMe is that his entire PON1 pathway has multiple mutations.  Thats the pathway that is responsible for detoxifying out pesticides from the body.  Well - that just explained why the IonCleanse by AMD was our first gamechanger.  He can't detox without it.  I've been saying for years that the Autism Epidemic is a case where genes load the gun and the environment pulls the trigger.  Food is one of the biggest ways we get exposed to toxins (its right up there with Air and Water).

What it means is that we do our LEVEL best to buy as much organic as we can grocery wise.  With a 12 year old who out eats both of us on a regular basis, this is a financial challenge and my mama friends assure me my grocery bill will actually double in the next few years as he hits the teenage years harder.  FABULOUS. 

There's more and more research out there indicating that genetically modified food is very bad for us, and that the toxins in conventional food is making us sick.  So...Enter Grant Family Farms CSA.  We've been members a little over a year now and its wonderful.  They are non-gmo and organic.  During the summer its 100% local fruits, vegetables, meat, coffee, eggs, tofu/tempeh, and cheeses (and you can select your choice of those, you don't have to order them all).  The CSA has pulled together farmers from across Colorado and southern Wyoming and is a partnership of sorts - each farmer specializes in something and everyone reaps the bonus (I type this as I am eating the most amazingly juicy organic palisade peaches...).  They drop off to multiple locations along the front range (even into Wyoming) and it takes less time than going to the grocery store.  During the winter they reach out to farmers in southern states (never out of the US) and bring in fresh from the farm organic non gmo'd goodies that way as well as greens and potatoes and the like that are local.




Monday, August 28, 2017

Back from USAAA

What a great conference!! I joined with a few other moms and represented Ioncleanse by AMD this weekend in Portland, Oregon to share the progress our kids have made with the footbaths. Its been a few months since the last one of these I did and I really have to say that USAAA is rapidly becoming my favorite conference to attend.

The reason is simple - its in a different city each year so there are almost no repeat attendees.  There are no cliques, no mean girl clubs, no leaving anyone out of anything - and everyone is truely there to learn. It was wonderful.

I came back  both absolutely exhausted (multiple 11+ hour days) and reenergized to share our story. My most powerful tool is the story of Dominic recovering, and I was reminded of that again this weekend.  There's something indescribable about sharing the experience of autism recovery with a mom who has no hope and giving that hope to her.

 I did actually end up telling our story to multiple non-conference peoplle - from the Uber driver who ran me to Target to get more paper towels because we didn't bring enough (he has 2 on the spectrum) to the Lady sitting next to nme on the plane.  Everyone is affected by autism these days. If you aren't sure who affects you, look again - I guarnatee there's someone.

So I'm back, I'm energized and life is good. :)