Tuesday, May 31, 2016

Random gains!!

So while I was at Autism one last week, I got a text from Daddy that said for OT, Miss Ashley laidout the lego pieces and the directions and Dominic did it with NO help.

No help.

Do you realize the cognitive function we are seeing????


AND

At the zoo trip we went to yesterday, we were practicing our words as we always do and Dominic out of the blue took my finger and directed it to words on the exhibit sign wanting me to read them to him.

What just happened????

Monday, May 30, 2016

Annual autism one post

This was my fourth trip to autism one in Chicago.  It was my first working for an exhibitor which made it a very different show - no staying out late because work started at 7:30am.   It was amazing to see my autism mama sisters - we only get usually once or twice a year to Visit.   It's also awesome to make new friends.  I wanted to share a couple of stories mostly for my own memory.  

The first morning we were there, my roommate and I were eating breakfast at the hotel cafe, talking about the things we always talk about - methylation, detox, die off, poop, etc.  the woman sitting with her back to us in the booth beside us came over and told us that we had her in tears - it was her first autism conference and she was from abroad, and she was weeping because she realized she found her people.  Of course we had her join us and we visited.  She is one of us.  That was the beginning of the waterworks for me



I talked to countless families as I washed their feet over the course of the 5 day conference.   Brand new ones with the deer in the headlights look all the way to decades long veterans.  I told our story until I lost my voice.  I made a huge number of new friends.  We renamed the conference to our annual family reunion.   I met the leading researcher in the world speaking about vaccine danger,
Dr Tetyana Obukhanych and totally fangirled.



One night the Team TMR gals who were around went to dinner and we discovered that our waitress had a 3 year old who was still not talking or potty trained.  Her docs told her it was because they are a bilingual home and she didn't read to him enough. We dropped a real big truth bomb on her.  That is not normal. 



One mom with 2 older boys came to do a footbath. Her teenagers are entirely nonverbal.  We cried together at the footbath booth.  

We met a mother whose daughter died from the hpv vaccine

I met and washed the feet of Maryanne Godboldo - a hero to many of us.  She is a tiny little lady who shoved a refrigerator against her door because the police had come with a swat team and a tank to take her 11 year daughter away from her because she declined to medicate her with medication that was making her sick.  TMR gave Maryanne the first annual warrior mom award.  And I held her hands and told her we are her people, and we will help her. Her now 18 year old daughter is very sick from the many vaccines and medications the state gave her while she was out of her mothers custody.  We talked about how now we know many of the things that were just quirky in her nieces and nephews were actually vaccine injuries. 

I purposely waited to see the movie VaxXed until Autism One because I knew I would be an emotional mess.  I was very right - it was one of the most cathartic nights of my life and I want everyone reading this to find a way to watch it.  The crowd heckled, cheered and sobbed our
Way through the movie.  



The Most powerful moment of VaxXed for me was right after, at the start of the q and a, when Del Bigtree had everyone stand who had a family member injured by vaccines (99% of a standing room Only venue that had at least 800 chairs stood) and apologized to us on behalf of the media covering medical issues.  Every single person in range Of me, including myself, immediately burst into tears. This was after sobbing my way through the movie holding the hands of my sisters.





Some miscellaneous photos of the TMR ladies in Chicago...





Saturday, May 21, 2016

5th grade graduation


Tuesday, I got a phone call from Dominic's classroom teacher telling me that Dominic was not participating in the choreography for gradutation and what would I like to do - have him stand there or pulled out and sit in a chair.

My response was "what graduation"

Yeah. so, apparently the message didn't get sent home that we needed to have him at school at 445 for a graduation ceremony on Friday.  This is part of the special needs parents life - when your kids cannot tell you what they did for the day, you rely on staff to let you know.  They kind of failed.

I told his teacher to ask him what he'd like to do about it.  She sounded so surprised by that answer.

So we got all dressed up.... he was so handsome.





and we went to school last night.  this whole thing was just surreal at that point.



It ended up being standing room only, and I sort of felt weird we didn't bring along extending family / friends.  Seemed that many people did.  huge numbers of people had bouquets of flowers and balloons to congratulate their graduate.  That seemed.... over the top for 5th grade...



He did ridiculously well - no stimming, he stayed in his spot, sat and stood on cue.  he was so totally bored, and it took all he had to just be still with them, but he did it.



They got his name wrong in the announcement and oddly enough wrong when they introduced him. I'm waiting for a reply from the teacher with what was up with that.  





And we snuck out the back door, skipping cake because the crowd was bothering all three of us.


My emotions were tremendously conflicted.  Everything Dominic has accomplished, he has had to work WAY too hard for.  And by that measure everything he does is extraordinary and I'm so proud of him.  Conversely, when i leave my bubble of special needs and see him around his age peers - who are singing, acting, doing public speaking, doing team sports,  etc - it becomes excruciating to see how much of his childhood has been stolen by this brain injury. How far we have yet to go.   He deserves so much more than he's gotten. 

We are not convinced we've made the right decision to send him to middle school, but the decision is made and we're crossing fingers.


Thursday, May 19, 2016

Goofing around with Miss Ashley

Dominic's ot, Ashley, is moving soon and he only has one more session with her.  Today they goofed around.  He loved playing with her snapchat app so
Much that I might have to download it.  Maybe. 










Wednesday, May 18, 2016

Telling you, we are *this close*




Every day, some new nuance triggers and I realize we're making progress.  I had shown Dominic these words at breakfast and he remembered and read them after school.  Also, he's excited about camp.

Thursday, May 12, 2016

Puppy's first hike


Dominic has developed a real love for hiking with me and the dogs.  he LOVES to be the first one going up the trail.  He'd prefer to run if i was being honest, but that is just not something i do, so we walk.   A few more weeks of the trails at Palmer park (literally 3 blocks from our house) and I'm going to attempt to do a much longer one with him.  Hopefully I can round up another adult to come with us just in case.... but the trail I have in mind is pretty heavily traveled.

Anywho.  Kumar, our new puppy has anxiety.  He throws up in the car within a block, and it took me some serious focusing on it to even get him willing to walk on a leash.  I think because of the anxiety he is going to be our best leash walker.  He wants to stay very near me and is not interested in running ahead/pulling like Kama.

so we decided we would take Kumar and Kama hiking last Saturday.   We did 5 miles in 2 hours.   And Kumar didn't throw up (tho he did pee out of anxiety when petted by a stranger and drool a river when we got into the car to head up to the trailhead)

Here are pictures from  Kumar's first hike.










Wednesday, May 11, 2016

Tales from home based OT - WHAT JUST HAPPENED?????

Today's OT session started out rough.  Real rough.  We had planned on having Dominic gather the trash and take it out because thats one of his ADL goals (activity of daily living).  He was triggered by a missing lego piece for one of his toys and proceeded to preserverate on that to the point that we had tears when we asked him to get the trash.

After trash, we gave him the option of playing sight word bingo (he put it away immediately), coloring (he put it away), riding the bike (by which we meant Daddy's exercise bike) or jumping on the trampoline.  After much grinding and gnashing of teeth, we got him on the trampoline.  He jumped for a little while then asked for the bike.  Because we are trying to get him to the point that he can self regulate we want him to pick the activity that will soothe him.  He went back to the trampoline.  Ashley asked if we have a foam roller (of course we do, we have most every type of exercise gear in this house), and together we gave him deep pressure on his back - totally calmed him down.

Then he asked for the bike again.  And instead of heading to the laundry room, where it lives, he went upstairs.  We followed him.  What happened next defies explanation and requires a history lesson.

A long time ago, almost pre-regression, we bought Dominic a tiny little cars bike, with training wheels.  He never learned to ride it, the regression stopped that.  But he sat on it and watched cars over and over and over again.  He outgrew it and we gave it away.

In the garage are 2 adult sized bikes.  One for Daddy and one we planned for Dominic when he was big enough.

Yeah. He's big enough now.  And he wants it.

Ashley and I got it down from the rafters.  Of course both tires were completely flat so Dominic and Daddy pumped them up:




Then This happened.  I am SO happy I had my phone in my pocket to catch it on video.  This is Dominic's first EVER bike ride.   Daddy will be stopping at the store for training wheels on the way home tonight. 





And some still's of the end....









Friday, May 6, 2016

Tales from Home based Therapy / Speech 5 May 2016

Conveniently, our current occupational and speech therapists are sisters, so they compare notes and try to be consistent with Dominic.  That's about to change as our OT's husband is getting transferred (army family), and she's moving.  BUT - everyone remember Jonny from last summer?  He's coming back and will be working for the same company.  So it may be a few weeks of no OT while paperwork gets sorted, but by Mid-June I expect to be fully rolling with Jonny appointments.

Anywho.

Yesterday, Dominic had THE BEST speech therapy appointment he has had since he started with Miss Sarah in January.  Hands down the best.

He met her at the door, used great eye contact, said "Hi Sarah", sat and worked the whole time.  Both she and our OT are using a metronome in the background to help him regulate his brain speed.   She told me he identified 13 of his 27 sight words, so he's holding tight at about 50%.  We are both convinced he is reading, but the connection between the reading center of his brain and his mouth is the one we are working to rebuild.

Here are two snippets of the work they are doing.

The first is working on Rhyming.  This is a developmental step apparently, and they work on it every session. 



The second video is about verb tense and they have been working on it also for a few weeks.  The kicker here is how focused he is with this task.


Thursday, May 5, 2016

Tales from home based therapy - cookies

Miss Ashley had Dominic make cookies for Occupational therapy yesterday.  He made one of my mom's old recipes that somehow manages to be gluten and dairy and soy free without tasting like its missing anything (Monster cookies).







He absolutely loved it.

Today when Miss Sarah came over to do speech therapy, he wanted to give her a cookie.  And then, after giving it to her, he actually told her spontaneously to "take a bite".  So basically, he ordered her to eat it.  It was quite adorable.

Sunday, May 1, 2016

Hello May.

April is over.  Usually this is the time where I say "enough with the awareness, lets get some action".  This year has been different.

this is the year of VaxXed.  The documentary that delves into the massive amount of fraud at the CDC, explains the #cdcwhistleblower issues and is going CRAZY at box offices.  Robert DeNiro originally accepted it for screening at the tribecca film festival, at which it would've been screened one time for a small audience and probably would've gone to DVD after.  Then, under pressure from pharma - they pulled it.  And the internet blew up.  The film has been playing all month all around the country.  Except Houston, where it got censored as well.  Let me tell you - you want Americans to go see a movie?  Tell them they aren't allowed to.  I keep pinching myself as I see reviews from journalists who were formerly very condescending to parents who said they saw their child regress after vaccines.

We have had a grassroots presence, mom to mom, for years.  Now the discussion is changing and happening at a higher level.

Amazing articles  from people, educated doctor type people, who have changed their views on vaccines are popping up everywhere.

The Fricking United Nations had an afternoon conference on childhood toxicity at which the #cdcwhistleblower was discussed.,

The tide is turning.  Things are shifting.  The conversations are happening!!!!  We are watching history.


Get yourself to a VaxXed screening and listen carefully.  Listen critically.  THINK.  MAKE YOUR OWN DECISIONS, you are a human being with a brain, not a sheep.  You have autonomy over your body and bodies of your children.  And don't let anyone tell you otherwise.