On the tv...

I am famous!!!

From Donny loves Jenny last night and filmed while I was at the generation rescue conference last fall

The very next thing that happened was that I got a selfie with Donny, Jenny and my friend Tiffany

little things adding up.....

As I mentioned a week or so ago, we like to use school breaks to tweak Dominic’s regime.  We made some changes again this year and are starting to see neat little glimpses of improvement as he acclimates, and to be honest,  we are thrilled.

These are some of the things we have noticed.

-          Increased awareness of conceptual stuff.  Like Time.  Out of the blue one afternoon he looked up from his lunch at the clock and said “One Two Four Nine”.  And it was 12:49.  This is the first awareness I’ve ever seen in him about the clock.

-          This is hard to describe because he’s not been tremendously non compliant for years, but we’re seeing an increase in what I believe is his receptive auditory processing – only having to ask him to do something once or twice before it registers instead of having to ask over and over.  So it seems like an increase in compliance but may actually instead be an increase in auditory processing speed

-          Poop scooping has become a regular, couple of times a week, chore.  As has picking up all the dog toys in the yard. 

-          He came into the laundry room yesterday and was extremely attentive so for kicks and grins I taught him how to fold his pants and shirts.  And then he proceeded to fold a couple on his own.  The biggie was that he actually paid attention. 

-          Better sleep.  We have removed Melatonin from his regime and he’s not needed it in 10 days.  That alone is HUGE.

-          Major detox response in the IonCleanse by AMD footbath and the most perfect poop I’ve ever seen (and I’m reminded that its been a LONG time since I blogged about poop. Hilarious).   

-          So much speech.  Lots of echoic scripting, but also definitely conversation. Lots of awareness and frustration that he wasn’t able to get out the words he was working on.  

-          He suddenly has hit a phase of being obsessed with the bubbles from shampoo.  And we’re suddenly going through Shampoo by the gallon.  BUT – he’s doing it himself!

We sent him to school today wearing his new GPS tracker in his back pocket.  Its an Angel Sense so has been texting us his location all day.  Its kind of cool.  The fact that he allowed it to go in his pocket is pretty  huge as I haven’t been able to get him to tolerate it (its probably the size of a deck of cards).

So, now we see how he does with school.  At home his receptive identification of sight words is growing daily.  He plays sight word bingo with his Speech therapist and has been doing great with it.

Feeding the Easter bunny

The Easter bunny was at OT this week ....

Dominic attempted to feed him spinach

Clippers!!!

Ahem

We have a first!!!

We have his first haircut given entirely wth electric clippers.  You know - the clippers that a few short months ago that he couldn't handle the vibration from and would move around dangerously?

And look how proud he is 

I'm Cute!!!

One of my fondest pre-regression memory of Dominic is him, at around  2 or so,  sliding down his little indoor slide, and Squealing “I’m CUTE” at the end. 

Its been many years since I heard him acknowledge anything about his looks.

We are on spring break this week and using the time to monitor some protocol tweaking that we started Friday after school.  We are also going to take the opportunity to do a pulse of  footbath intensity.  

This morning, I was on a 7am conference call and Dominic came to ask me to help him with his hair.    After I helped, he looked in the mirror and said “Cute”.  Of course, I made him say it all again in sentence form (“I am Cute”)

Its been easily 8 years since he acknowledged his adorableness. 

And, completely unrelated, here’s his most recent school picture.  Its easily the best picture the school has ever taken of him.

 

Institutionalization.

Many many many autism families hear this phrase from their diagnosing medical provider.  We didn't.  That doesn't make it better for anyone
"There's nothing you can do and you need to start looking for a long term care facility for when he/she is big enough that you can't control their behavior and they need to be institutionalized"

I personally know parents who have chosen long term care facilities because they were out of options, out of money (those LTC facilities are often paid for by the state if the child qualifies as disabled), out of sanity, out of everything.  It was a gut wrenching, heart eviscerating choice.

As ya'll may remember, Dominic was approved for skilled nursing hours and in Colorado those can be administered by a parent if that parent is a CNA.  We decided to send me to CNA school, because we don't leave resources on the table.   I have just finished the clinicals portion of my CNA class, and our graduation is tonight.  Our state boards written and skills tests will be sometime in the next month or so.

These clinicals were eye opening and heart wrenching at the same time.   I cannot see myself ever working in that kind of environment.  We were at a long term care facility that was a mix of the elderly, adults there for assorted rehab, and either brain injured or developmentally disabled young adults (as students we were not privy to any diagnosis).   For the most part, the residents were very sweet (and many were low to non verbal which wasn't unfamiliar given how hard we've worked with Dominic), and the staff was overworked and under compassionate.

Last night I got to assist the Shower CNA (by Federal law, these facilities are required to offer showers to residents 2x a week) giving a younger - she might have been 30 - either developmentally disabled or brain injured woman a shower.  I'll skip the gory (and they were gory) details of the shower room being too over stimulating, and go to the end.  We had finished her shower, gotten her lotioned and dressed and the shower CNA was getting ready to move on and I asked about her hair.  It was a tangled mess.  I offered to comb it.  And then I asked the resident if she'd like it braided.  And she lit up and gave me the biggest smile. So I braided it.  For the rest of my evening, every time she saw me, she got a HUGE smile and said "Joy, Joy, Joy". 

This is our childrens future, if we don't change it now. Its bleak.  Its full of being left sitting alone in the hallway in a wheel chair (or other chair) while the CNA's frantically run between rooms answering call lights and putting people to bed.  Its lonely - its smelly from the incontinence.  Its loud from the yelling and violence. Its being restrained in a bed at night with giant bolsters that make it impossible to "fall" out of bed (or even get out of bed if you ask me).  its having your diapers changed by many different, strange hands.  Its the loss of basic human dignity.

And if we don't change right now, this is what our children will face when we are gone.

We need to follow through on the concepts of Autism villages (and many are already underway), where adults can live in small, safe, communities, with as much independence as possible, with caretakers who are compassionate and passionate about what they do.  Where they can do tasks like gardening and raising livestock, anything that they love, to keep them active and engaged, so they don't end up so obese they require a machine to move them from their wheelchair to their bed and back, covered in pressure sores and in diapers.

Yes, this was a vent, but I've seen the future and its ugly. 

Tales from home based OT - 9 March

I believe we are starting to see the effects of the Dyspraxia protocol we started back up Feb 14 kick in, after a few weeks of a LOT of verbal stimming (seriously, I wanted to pull my hair out from the stimming.  But we stayed the course and are finally seeing some shifts).

Yesterday was Dominic's 60 day OT re-eval with Miss Ashley.  So she asked that I have him in the footbath while she did paperwork and she had him make me a flower with the tiny little beads (fine motor practice on steriods - i have a hard time with this thing)

I made myself a snack of popcorn and Dominic said "Popcorn".  I redirected with - "Nope, you need to use all your words", and he said "I NEED popcorn, Mommy, PLEASE".  Ashley and I burst out laughing with the NEED part and I made him some too.

This next one requires a bit of back story  - I know I've posted some videos of Dominic singing along with his disney movies and of Miss Ashley playing disney songs on her phone while he works with her and him trying to sing.  So yesterday, while he was making me the flower, he looked at Ashley and said "I Sing?", and took her phone.  So she started him some disney songs. 

He ASKED to sing, people.

This morning, I found my phone myseriously playing music that I didn't select.  He had turned it on.

Big changes around here.  Today Ashley is going to help us set up a chore system which will pull together the things we've taught him the last couple of months and hopefully get him doing them completely independently (vacuuming, laundry, picking up dog poop, dishes, etc)

So this happened

Someone is learning a new chore.  He did really well for the first time.   With 3 dogs now this is going to be an every other day chore, I think.  

Only one pica attempt which I blocked - so I will continue to supervise very closely.  We will make him wear the gloves every time (cna school has turned me into a bit if a germaphobe)

Field Trip Day

The fifth graders all went to the Denver Museum of Science and history today.  Dominic has been so excited about this trip for at least a week.

Here's our conversation over breakfast.

As expected he had a fabulous time.  Apparently they dissected a heart.

When I picked him up, his classroom teacher pulled me aside and told me... that he said his first ever spontaneous sentence to her recently.  She's been working with him on playing catch, and she threw a ball to him, he threw it back, and said "I play catch with you"

blink blink.

Thats pretty amazing. :)

Tales from home based OT

This is how it went down...


The Setting:  Dominic is sitting at the table, avoiding handwriting practice.  Miss Ashley has written his sample words and he just doesn't want to do it.

Dominic:  "Mommy, Kiss!!"
Me:  "Nope, not til you write your name PRETTY"
Dominic:  "Ashley, Kiss!!!"
Ashley: "Nope, not until you write your name.

Dominic picks up Ashley's hand and smooches it, then proceeds to write the clearest version of his name I've ever seen.

IonCleanse by AMD - Month 14

the IonCleanse by AMD is now an automatic, regular part of our lives.   We don't go without it, nor do we every plan to.  Every footbath is gross and I'm so glad we have the machine to help get that toxicity out of our bodies.  February was our 14th consecutive month of using it no less than every other day. 

Gains that Dominic's made this month have been very subtle.  We're at a point where we've peeled back all the stimming and negative behaviors (unless he has a dietary infraction, which did happen a few times this month), and we're digging into healing the initial brain injury.   What that has looked like here:

- Doing far more activities of daily living with his OT - This month he's cooked (both baking his own birthday cupcakes and making mini quiches for dinner one night), he's done laundry, he's shoveled snow, and he's vacuumed regularly. 

- really supporting speech with the Kelly Dorfman Dyspraxia protocol, which we started back up Feb 14.  He's doing a TON of scripting and verbal stimming, which for us is a precurser to using more language regularly.

- His speech therapist is also working on sight words - he is consistently identifying sight words (and different ones each time) at approx 50%. 

- His flexibility is increasing exponentially.  Not only has he not complained about a massive schedule shift with me in CNA school now, he's also done things like tolerate doing the zoo backwards.