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.


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.

Thursday, April 28, 2016

You would think I knew this by now...

So last night after Dominics horrible day, I went to check him while he was sleeping.  He was completely drenched in sweat.  For Dominic, this is a sign of his liver being a bit sluggish and his body taking the next elimination organ (the skin).   In Dominic, that liver sluggishness + the time of year = seasonal allergies.  Being as how I was already giving a natural antihistimine, i knew it was time to bring out the big guns.

I talked to an md, got the appropriate dosage and started him on zyzal this morning. (I take it, i know its fine with my body and it was the only one i had in the house).

Not only did he have a stellar speech session this afternoon, we then followed it with a footbath and look at the massive liver release...

We are going to do daily footbaths for a while, I suspect. 

Wednesday, April 27, 2016

Tales from homebased OT - pass the wine please

(just kidding, i'm on a diet.  wine has carbs)

So you all know I've pounded the "routine shall set you free" mantra for years and we live and die by routine.  Here are the things that were out of routine for Dominic today:

- Early wake up (4am) after which he may not have gotten back to sleep.
- Middle School transition meeting after school that he sat through
- very little time after getting home before Miss Ashley arrived.

Here's how OT went.

I had texted Ashley earlier to ask if she'd like for him to fold the laundry that i had ready to fold and she said yes.  So that was the plan.  She arrived and normally OT is done upstairs with dogs locked downstairs.  Strike one was trying to get him downstairs to the laundry room to fold the laundry.  He folded one shirt with verbal instructions,threw it all back in the basket, shoved the basket in the laundry room and refused to do anymore.

Then he kicked the dog (Kama) in the head for no reason, so I sent him to his room for 5 minutes of cool off time after which he refused to come out.  he got under the covers and told me night night.  I had him come out and apologize to the dog, and then he went into the laundry room and got on Daddy's spin bike (self regulating at least, but also and avoidance mechanism).

We got him off the bike and upstairs to do a puzzle which he refused to do.  He asked for the trampoline.  So we went outside and had him jump.  While he was jumping, Kumar (the 5 month old puppy) ate dog poop.  Which freaked Dominic out, and he insisted on coming inside and giving Kumar a bath.

After he gave the dog the bath we got him started finally on his puzzle.  He was not interested.  He did maybe 1/8th of it with lots of verbal cuing while loudly insisting the whole time through that it was time for Ashley to leave ("Ashley bye", "Ashley go home")

He is currently eating dinner.   And seriously, this is one of the days i just want to put him to bed early and take a bubble bath.  However, I still have laundry to fold and lunches to make.

PS.  The transitional meeting went fine, we were discussing how to most gently transition him to middle school and what his electives will be (PE and Choir to start with and depending on how choir goes, we might switch to art).   He will be in the SPED classroom about half the day, and will be with his peers for electives, science and social studies.  He'll get math, reading, and writing in SPED.   I shared with them this graphic as the long term, create a functional adult, set of goals that we are going to work towards for the next 9 years.   They loved it. 

Monday, April 25, 2016

Palmer park hike, 24 April

On Saturday, when I told Dominic that we were going on a walk, he got very excited and said "climb rocks". When he says climb rocks what he means is hike in Palmer Park which is a lovely open space hiking area a whole four blocks away from our house. So in order to appease him yesterday I took he and two of our three dogs hiking. I can't handle all three at once just yet. We left the baby at home he cried the whole time.  Here are pictures of our hike.

Posing on his farvorite rock

Stopping to smell the flowers....

Selfie with Pikes Peak in the background

I see houses!!

Grumpy Rock

Attempted to get them to all look the same direction... failed...

Its a Cave, Mommy.  Where are the bears?

Sunday, April 24, 2016

Alpine autism walk 2016

Every year, as a family, we walk in the Alpine autism center 5k.  We went yesterday and had a wonderful time.   We had friends join us from Denver too :).

Family pre walk selfie

Never know who you will get o take a picture with....

The fabulous folks from AMD came down to support us. 

Usual pic of child up the wall

Post walk smiles with Daddy

Yes we made our traditional post walk lunch at red robin and Dominic asked for a strawberry lemonade.  We allowed it as a treat for being an absolute rock star for the walk.  He then ate 4 baskets of fries, a chicken breast and some broccoli.  

For those of you keeping track.... here're previous years of the Alpine walk...

Friday, April 8, 2016

Changing boundaries

Because of where our house is located (4 houses away from a very busy major road), we simply do not allow Dominic to be in the front yard unless its a transitional thing (eg, transitioning to car, bus, etc).  We don't play in the front, we don't do anything in the front.   The backyard has a swingset, trampoline AND 6 foot fence.  Much safer.

With the addition of the GPS tracker and a willing accomplice (speech therapist), Dominic spent 45 minutes doing therapy outside at Daddy's suggestion yesterday.  

He did really well.  She told me as she was leaving that now he is scripting whole sentences in anticipation of hearing them (she uses Finding Nemo as a tool to get back and forth speech).  So its not echoic, now its scripted.  And its 4-5 words.  This is a huge step for him.

Tuesday, April 5, 2016

Tales from Home Based ST April 4

Dominic historically doesn't want to work if either Mom or Dad is in the room.  So this is not as good as he usually does, but look how good he's doing!!!!!  I'm beside myself pleased.   So is Miss Sarah, his speech therapist.

First they played bingo with letters, to work on back and forth interaction, asking sentences, and articulation.

Then they worked on verb tense.  That was interesting to watch.  Dominic is grasping the concept beautifully.

and finished the session with sight words.  Which works on not only reading but also articulation.  She uses the drum for a percussive beat and that helps him alot.