Wednesday, May 2, 2018

Cook.

For a little bit of background, Mondays are our scheduled occupational therapy cooking days for which I prepare a relatively simple recipe, by the ingredients, and get the kitchen ready. Wednesday’s are supposed to be our focus on fine motor where Dominic practices his hand writing turn taking via playing games and etc. This is how our afternoon has gone:

Alyssa our OT came over and asked Dominic if he would like to play game with her. Dominic looked at her and with his funny little accent said “Cook”.

Alyssa asked him what he would like to cook. Dominic responded by saying egg cups. No egg cups require me to actually have purchased some fresh vegetables, and made sure that the ducks had given us enough eggs to make this happen and I literally had made a batch of them last night. So instead i rummaged through the pantry and found some
Gluten free pasta sauce and a cake mix.  They are currently multitasking 

🤓

Thursday, April 26, 2018

Well, cool



Yesterday evening during occupational therapy, Dominic was incredibly productive. First he did the chores that I had asked him to do before she arrived – including picking up the dog poop outside and folding his laundry. Then they came upstairs to work on fine motor and Dominic got really excited to make dinner. Only Wednesday is not dinner night. Monday is. So Dominic decided that he wanted to make the gluten-free dairy free macaroni and cheese as a reinforcer for doing his handwriting practice. He wrote his name in cursive six times, doing pretty well, and then he made himself dinner.   (The upper left is his model)





When I texted his classroom teacher to let her know that we have graduated from tracing a hayu later to do his cursive name to choosing just a model, she sent me the following link and asked if we’d seen it. Turns out the news was it Dominic’s school and he was on tv!


And then she and I had this conversation - we had told her that if state testing caused any undue stress I would
Immediately come sign the form exempting him:




Monday, April 23, 2018

When imaginary friends come to visit ....


When I was pregnant with Dominic, I joined my due date club at Mothering.com, and followed several of those ladies over to the less politically correct group, MamaDrama.  We posted there for a long time, those ladies got me through Dominic's regression and our new reality.  And not a one of them lived near me.

When Facebook came along and killed off the message boards, we moved ourselves to facebook and continue to share our daily lives with each other.  Many of us have special needs kids in a variety of flavors.  We support each other through life - we've done virtual birthday parties, baby showers, and funerals.  We've evolved far past an online group of random women - we are a community.

So when my friend Jenn told me she wanted to bring her 17 year old son Ben (spectrum, epilepsy, violence, aggression) to visit for a weekend, I had zero hesitation and cleared my schedule.  They spent this last weekend - a CLASSIC Colorado spring weather weekend - in town and we had a lovely time.

I want to point out a couple of things first...

- that all those folks who say that individuals with Autism don't want friends - is in both of our cases, very wrong.
- at different parts of the weekend, both Jenn and I noted how nice it was to be spending time with people who "got" our kids quirks and weren't phased.


We started the weekend on Friday, meeting Ben and Jenn at their hotel for swimming....


Obligatory Mom Selfie


The Boys hit it off really well and were frolicking pretty quickly after meeting each other.  Ben is much more Verbal than Dominic, so that helped. 


These folks are from Atlanta, so they were... nonplussed that Saturday we had enough snow to go sledding.  So we went sledding... (refer back to my statement about Classic Colorado spring weather)






Then, after a purposeful break time to allow both boys some breathing space,  we went back to the hotel and swam again before dinner, which is when I learned exactly how much Shepherds pie 2 teenage boys can inhale.  (Hint: ALOT)

Sunday dawned beautifully - as only Colorado can in the spring.  Sunny skies, and warm air.... So we did one more swim in the morning and went to Garden of the Gods after lunch.   By this swim, Dominic and Ben were BEST FRIENDS.






I always start showing out of towners Garden of the Gods from the scenic overlook, because of how amazing the view is,. and how big the rocks are up close comparatively.

A Random stranger took this picture. I'm rather pleased with it... 

First MIGHTY EAGLE post of the day...


The remainder of these we snapped as we followed the boys through the park... I'm super pleased at how well behaved Dominic was, how interactive and accepting of a peer, and how much fun we had.




















And there we have a double mighty eagle!


There were a couple of conflicts between them over the weekend, so it wasn't perfect.  BUT - none of those conflicts required more than the moms negotiating a compromise.  It felt... oddly normal. We don't get that very often. 

In the end, the verdict is that the weekend was a raging success and we have a standing invitation to visit them in Atlanta.  And they've lost their status of "Imaginary friends"














Monday, April 16, 2018

For the #whatjusthappened files

Monday remains the day that during home based OT, Doninic makes dinner.  There are a handful of easy recipes we're rotating around with the goal of teaching method, safety, and ease in the kitchen.

One of those recipes is egg cups. You take any combo of veggies/meats, put in a muffin cup, top with beaten egg and bake into a little hand sized frittatta.  We love them around here.  Tonight, Alyssa stood back and didn't say a word, letting Dominic just make them.  He got the steps way out of order, but the end product is delicious, and i'm eating it as I type

Of 10 steps, Dominic needed minimal verbal curing on  5 of them.  Mostly around the stove and safety.

What blew Alyssa's mind is that he didn't wander off at all the entire time.  His focus was laser.  Turns out all the chatting was distracting him.  Here we thought we were giving direction. Ooops.  What blew my mind is that after he got the egg cups in the oven he asked to cook asparagus and pasta.

Alyssa and I are officially impressed and suprised.

We're bouncing around ideas for helping increase his independence WHILE working on reading without giving him an easy way out.  Thinking maybe TYPED, large instructions with a picture of each step a la pioneer woman.  Would love any ideas / already made resources.....


Sunday, April 15, 2018

The fun stuff....


 

I know I’m having a hard time keeping this blog up to date but there’re multiple reasons for that. Being too busy isn’t one of them.  Enjoying watching Dominic blossom and just doing stuff with him are.  Today I wanted to share a couple of stories about last week because they are really cool examples of the things we’re starting to see as we peel more layers back and his speech (and subsequently personality) emerge more and more.





 

Kama

Backstory – very early – 4am -  Thursday morning, I woke up to the sounds of a dog crying. I thought it was Kumar who sleeps in his crate crying to be let out to go to the bathroom, so I staggered out of bed and opened his crate.  He looked at me with a very confused look on his face.  I went back to bed, assuming I had dreamed it, not even thinking about Kama because while Kama sleeps on his own bed in our walk in closet, he has access to go in and out as needed so that made no sense.  Fast forward to right around dinner time Thursday evening and I was petting Kama.  I petted all the way down his tail and he cried.  It was obvious he was in pain.  A closer examination determined that his tail was very inflamed and he’d been licking it. I didn’t see any blood or broken skin but the level of tenderness was concerning enough that I called our vet, talked about a couple of options and ended up giving him a doggie anti-inflammatory we had left over and made an appointment for Friday morning in case he still needed it. At this point I didn’t have any idea what could be wrong.  After a vet visit, xray to determine that his tail was NOT broken, professional exam, we theorize that he got bitten by a spider in the night and that’s why I heard him cry.  They shaved his tail to determine that there’s a place of more localized swelling.  So he’s got a big bandage on it, antibiotics (a lot. Like a gram 2x a day) in case it was a brown recluse and more anti inflammatories.  We go back for a bandage change next week.  Also, we own a 72lb poodle.  

 

Point of the story – Dominic got off the bus on Friday after school and his first words were “Kama, feeling better???” and he proceeded to love all over Kama.  Super sweet.   And showing concern, cognition, memory, and appropriate behavior.  Plus – empathy. 





 

Eggs

Backstory – Ya’ll know that for a long time Dominic’s breakfast was 3 fried eggs and a bowl of oatmeal. I taught him how to cook his eggs fried before I taught him how to cook them scrambled and these days he prefers scrambled eggs with grated manchego (sheeps milk cheese, which he CAN have)

 

Point of the story – Saturday morning Dominic was plugging along getting his breakfast together.  He got out 3 duck eggs, washed them, and proceeded to crack them into a hot skillet.  I just watched, assuming he’d decided he wanted fried eggs.  No more than 2 minutes later he turned to me with a look of absolute horror on his face –  and said “Mommy, SCRAMBLED??”  He realized he had forgotten a step and panicked a little bit. He got to learn how to scramble them in the pan instead of whipping them first.   

 




 

Chores and teenagerhood

We are continuing them, and every day there is SOMETHING that Dominic does around the house.  It ranges from picking up dog poop, to taking out the trash, to folding his laundry, to vacuuming.  What is hilarious to me is that every single thing I ask of him is met with a drawn out NOOOOOOOOOOOOO.  And then 10 minutes later he goes and does it.   Its such a glimpse into a typical teenager’s response that it makes my breath catch every time.  The other typical teenager thing we’re seeing *every* morning is that he wants to lounge on the couch in his pajamas watching videos (he’s totally figured out how to get to Netflix and amazon on our tv.  Better than we have), and does NOT want to get dressed.  I get up at 5:30am most mornings to walk on my treadmill which is right by the aforementioned sofa and every time I say “Dominic, go get dressed”, I get the “NOOOOOOOOO” in response.  Until I tell him I’m going to take care of the ducks without him. That gets him moving.

 

 

And all of these are bookended with the knowledge that we have a long way to go – as evidenced by his toy choice from Target today. Granted, he is playing with them entirely appropriately …..

 

 



Tuesday, April 10, 2018

Down Time

This is different.

About 2 weeks ago, on a Sunday afternoon, I realized that I had some downtime.   Let me say that again – I had no housework pending, no food to prepare, no requirements of me. I had exercised, fed everyone, supervised Dominic’s current chore list, and I had nothing that needed me immediately.  So I put together the new hammock swing that had been sitting in the garage for weeks waiting for us to have the time to set it up.

Since that point I’ve been aware, nearly every day, that there was at least one moment during which I had nothing pressing that I needed to do.

For YEARS, I’ve described taking care of Dominic as requiring the same level of supervision and support as a toddler.  You know how a toddler needs either assistance doing tasks or just plain can’t do tasks or is specifically unsafe doing tasks… that’s how Dominic’s competency has been until very recently.  Since January, these are the things that have CHANGED in our daily life, and I was doing ALL of the below before.

Dominic now:
- Takes care of the ducks 100% independently. This means letting them out in the morning, getting them food and water, and gathering eggs, and fluffing the bedding. It means exercising them during the day (letting them out and chasing them)  It means putting them to bed at night.  I actually went out to make sure that he’d done it right this morning because we didn’t hear the water running, and sure enough he’d gotten everything right.

- Takes care of the feeding the dogs every morning

- Picks up all the dog poop (Seriously, I haven’t had to do this in probably 2 months and he does it fully independently, several times a week). I WAS spending about half an hour every weekend just on this task.

-  Folds all his own laundry (we just toss it in his own basket and he takes care of it).  Granted, he then crams it into the drawers so it doesn’t STAY folded, but one step at a time.

- Vacuums.  He particularly enjoys using the hose attachment and will spend an hour on his hands and knees vacuuming.

- cooks his own breakfast (scrambled eggs) and cooks 1 dinner a week (with his OT, but we’re getting ready to try to generalize this skill)

- Gathers the trash and takes it out several times a week

The chores that we are working on learning and he will do with verbal cues from me are cleaning the toilet, sweeping the floor, preparing his lunch for the next day,  and washing the windows.

The sheer load that him doing all of this has taken off my shoulders is, in hindsight, way heavier than I realized I was carrying. I really was doing all the things for him that you do for a toddler aged child, and I didn’t realize until I had a few hours to set up a swing how foreign it was to have downtime. 

I had to send Dominic to his room Sunday night because he and Kumar were playing really rough and that was the only way I could stop the cycle.  What I don’t want is Kumar to bite Dominic in play, because Dominic pushes him that way.  So I sent him to his room at 5:45 and he actually stayed.  Rod went down to send him up for dinner and found him, arms crossed, legs up, with crocodile tears.  He wasn’t locked in, the doors were closed and he was told to spend some time calming down. And he did. 

We were talking last night after Dominic went to bed that it feels like he is now catching up some.  It feels like he’s maturing in a lot of different avenues. He is certainly talking much more clearly, and attempting conversations more frequently.  He’s able to sit and do first grade math. He’s able to identify a great portion of his sight words….

So, you say, what has changed. Why are we seeing this sudden progress?   Well, these are the things we’ve done since January
-        Trialed the androgen reducing protocol. This will be something we cycle in and out, I think. Purely based upon my intuition on how to manage it.  We’re finishing up the last bottles of supplements and will wait 3-6 months before adding them back.
-        Added Liovi and we are dosing per muscle testing each day. Its fluxuating, from 2-4oz per day.  We started at 2 drops and worked up to 4oz, then we’ve been able to back down.  I suspect that we will continue to fluxuate on how much he needs. This is such a strong probiotic that folks are seeing cognitive gains from it alone
-        Maintained our anti inflammatory protocol and mixed it up. Over the years we’ve used PEApure and of course CBD, and now he is muscle testing for both together. So we’re using both together right now.  PEApure crosses the blood brain barrier, so its interesting to me that after a solid 8 months on Prime My Body CBD, he’s now testing for it.  I suspect that it’s a layers of the onion thing.
-        Maintained and increased detox.  Dominic has a 15 minute infrared sauna every night and still does the IonCleanse by AMD footbaths 2-4 times a week. Once summer starts and he’s in the pool, he will cleanse every day that he’s in the pool.
-        Added neurological balancing technology from VoxxLife.  In all the years I’ve worked to heal Dominic’s brain, I’ve never seen anything work like these socks. (and insoles).  2 days into wearing them and he was asking WH questions in school.  We are now 6 weeks into wearing them. I have received reports of a presentation at their conference in Vegas last weekend where they shared brain scans before and after putting the technology on their body. When wearing technology, the entire brain lights up.  As soon as I see the slide presentation on youtube, I’ll share. I so hope it gets there.  To be able to improve brain processing without adding to the body load for excretion is revolutionary.  The immediate improvements of balance, swelling reduction, and stamina positively pale with this because think of what it can do for alzheimers, parkinsons, TBI’s….


All of these together are changing our life, for the better, so quickly. Its very exciting and offers a spark of hope.  I don't know yet if I dare fan that spark.... but while I think about it i'm going ton build the bookshelf that we bought from lowes over the weekend.  Because I'll have some downtimes. 



Monday, April 9, 2018

On cognition

Lets talk about something that’s rarely talked about in either of the factions of autism parents (the Neurodiversity tribe and the Biomed tribe).

Lets talk about cognition.

Now, to preface this discussion, remember, I don’t actually believe that Dominic has Autism. I believe that Dominic had hepatic encephalopathy as a result of the MMR vaccine (anything the virus causes, the vaccine can cause too – if you don’t believe me, google “does measles cause hepatitis” and “does measles cause encephalopathy” and see what you get); triggered by a cytokine storm from the influenza A variant in 2009.  That hepatic encephalopathy damaged his neurological pathways and wrecked havoc on his speech center.  I am not purporting that every child with an autism diagnosis has the same etiology, but I have personally sat in presentations by doctors who say that all autism is encephalopathy, so I’m confident we are not the only ones.

Both my husband and I are college educated, professionals.  I have, from childhood, used reading as escapism.  I’m a published author.  The concept of our child being illiterate at 13 and struggling to do first grade level math is so foreign to anything we ever thought that its been the one topic I don’t broach with blogs, etc.

He’s a very clever kid. He always has been somewhat of a Houdini, problem solving has always been one of the strengths we talk about.  You can see the gears in his head turning. But they don’t seem to turn for things that we consider basic like reading and addition/subtraction.  

Another friend of mine online asked in a group what the healthy thing to do was when you got an IQ test back on your child that showed their IQ was 40.   7 years ago, Dominic’s IQ tested at 42, so what I said was “When it happened here, I took that letter and shoved it back in the filing cabinet”.   My friend suggested I burn it. I told her it stays in the filing cabinet because I may need leverage with the school district someday.  She called me gangsta.   That in no way means that number on that piece of paper didn’t eviscerate me.

These kids like mine have neurological damage.  And we don’t talk about it.  They aren’t just in special ed classes to get sensory support and behavior management.   **

At my 20 year College reunion I caught up with a professor of mine and she asked what the likelihood of secondary education was for kids with autism, and I told her that for mine, I will be over the moon ecstatic to get him to the point where he can hold a minimum wage job and live independently.  That’s what we’re shooting for.  That’s what the majority of my friends are shooting for with their kids.   We are looking at 1 in 28 boys RIGHT NOW affected with autism and its projected to be 1 in 2 in less than 20 years.  Think hard for a minute what that is going to look like on a societal level.

1 in 2 young adults who cannot be in the military

1 in 2 young adults who can only ever possibly hope to be doing minimum wage jobs.

1 in 2 young adults who may never be allowed to get a drivers license. 

1 in 2 young adults who may require a 7x24 support person to live, who never move out of their parents house, who are institutionalized.

1 in 2 young adults who may never have families of their own

1 in 2 young adults who will be taking from social security from an early age, never contributing.

 

Do you get it yet? Do you understand why we are so vocally protesting mandated vaccination, gmo’s, chemtrails…. Our kids have already been sacrificed for the greater good / herd immunity.  We’re trying to protect yours.  We’re trying to ensure that your child doesn’t have the same bleak future that ours do.  Even bigger than that, we are trying to make sure that as a species we don’t kill ourselves off.  That we actually have a next generation.  Its that bleak.

 

**Yes, things here for us personally have taken a distinct turn for the better this year and I’ll tell you more about that tomorrow.

 

 

Tuesday, March 27, 2018

Spring break, the plan and day 1


With Rod working full time and me working from home full time, we struggle to amuse Dominic when there's a day off school.  Over the holidays, I took a full 2 weeks off and thats just how we handled it.  For spring break, I wanted to trial what we will be doing this summer, so we have a nanny. 

She comes over about when Rod leaves for work, and leaves about when I wrap up.  I requested from the school a pile of work and made the below schedule.  My biggest goals were to get Dominic active and keep him off the screens.





So. Yesterday -

Rachel arrived right around 10am.  Dominic had by that point completed items 1 and 2 and he insisted on a bike ride.  They were gone about 40 minutes, came home and he wanted to walk the dogs.  We negotiated that down to just 1 dog at a time  and they left with Kama.  Kumar cried the whole time Kama was gone.

They came home, made lunch (Dominic ate 2 pb&j's on GF bread, a bowl of grapes, a baggie of sugar snap peas, and half my steak/asparagus that I didn't want) and then walked Kumar. Kama cried the whole time Kumar was gone. 

Upon their return, they did homework.  This consisted of practicing his cursive signature, reading a book out loud, drilling sight words, and doing a math work sheet.  Dominic does something called touch point math, which helps him add and subtract, but whats funny is he REALLY wants you to hold his hand while he does it.  His teacher warned me about this.  We let him stop halfway through the worksheet for another dog walk (Shanti - during which both Kama and Kumar cried the whole time) and then they came back and finished.

Here's a video of him doing his math homework.  Its first grade math, but you guys HE'S DOING FIRST GRADE MATH!!!!!!



The plan is to have similarly structured days the remainder of this week.  We will mimic this during the summer, but with things like Zoo trips and Swimming worked in each week.


Monday, March 26, 2018

Frozen!!!

We did something Very Cool this weekend. Most of you are aware that Dominic LOVES his disney stories, the characters and is always up for seeing them. One of the ones that he has loved since the first time he saw it is Frozen. We had the opportunity to take him to see Disney's Frozen on Ice this weekend and he adored it. 


At the beginning of the sow, they brought out ALL the characters!!! he nearly lost his mind when Timon and Pumba came out.  He was quite excited about Nemo and Dory, too.





When i went to get him a souvenir mug, they were making rainbow snow cones with them. That was just not going to fly, so I (loudly, because hi, have you met me), asked for a non toxic version. The vendor said they don't have any, so i got one with plain ice. Then i proceeded to have a loud conversation with the other mom in line about how nice it would be if I could get my kid a souvenir without poisoning him.   They gave me a comment card to fill out. HA. Dominic loved his olaf mug and actually quite liked eating plain ice.




Obligatory Family selfie:




My favorite moment was the song Let it Go.  Mind you, its the one song that everyone knows from frozen, and Dominic has loved it for YEARS.  I caught him singing along *on video*. 



The place was loud, there were tiny princesses everywhere, there was chaos, and he did AMAZING

Friday, March 2, 2018

On Fading out verbal cues

Also knows as WHAT? IS? HAPPENING??????

So the other day when I shared the video of Dominic making scrambled eggs with significant verbal cues, how I left it was I'd asked his OT how to start fading back the cuing and giving him more independence.

Lasts night was night 2 of Magic socks, and our Liovi dose is up to 2oz.  Nothing else has changed.  The liovi ramp up has been ongoing for a few weeks now.

This morning Daddy had a conference and left the house at 630am.  I had a meeting at 7am and knew that I was going to need to play short order cook while the meeting was going on (Conference calls and working from home, for the win). I hustled through my shower, got the eggs gathered and ducks fed with Dominic and then realized I needed to get on the phone and start multitasking. I asked Dominic to please wash 3 eggs and I'd help him make breakfast in just a few minutes.

I got logged in, prepared for my meeting, which turned out to be next week not this, and my boss asked me a question.  That morphed into about 10 minutes of conversation with my boss and I smelled natural gas. I literally ran into the kitchen to deal with this, thinking i'd find a catastrophe.

Dominic had washed, broken and whisked his eggs.
He had turned on the burner (but not quite all the way, hence the smell) and put oil in the pan
He had poured his eggs into the pan
and they were almost done.

He grabbed a bowl of the granola he made with Ms Alyssa the other day and sat down to eat while i frantically texted Daddy what happened.

They are ridiculously over cooked - but he did them with zero cues






Blown.Away.  We totally just skipped weeks of gently reducing cuing.

~~~~~

Second anecdote of the day (i love it when there's 2).

Dominic has door to door bus service.  Every afternoon he comes up the door and rings the bell and waits for an adult to let him in the house.  He never just opens the door and comes in. IT took a long time to get him to safely maneuver himself off the bus and up the walk so I assumed we were in for another long time to transition to just coming in.

Nope.

Today I was outside working and i heard the bell ring. By the time I got inside to open the door, he'd already done so. No Big Deal.
#littlebutbig

Thursday, March 1, 2018

Magic Socks


In the Autism community, there's a  phenomenon known as "I'll have what she's having".  What happens is that someone tries something, does well, tells their friends and their friends all try it.  About half of them do well, and half don't. They go tell people accordingly.  Rinse, repeat.

This is how we found the ioncleanse, its how we found Restore, its how we've found PMB... so many things.

I used to TRY THEM ALL, but i'm getting better about listening to my intuition.   When my friend shared about these Magic Socks from VOXX, my gut twanged. I, with almost no researching, signed up for the a wholesale account (yeah, its another mlm) and bought pairs for the whole family.  The gist of it is, there's technology woven into the fabric of the socks and into the ball of the insole that works to bring the brain stem (where we manage pain, autonomic nervous response, etc) into homeostasis. 

They're socks. 

I figured I was likely going to kick myself to spending money on really pricey socks.

They came last night. Dominic and I both wore them all night long and all day today.

First, me.
I get up at 5:30 every morning and get on the treadmill for 45 minutes.  I've done this every day this year.  And every day this year the first 5-8 minutes has been excruciating because my feet are all swollen from retaining water over night. Some days my feet are so swollen my shoes don't fit me. Its a big deal.
Until its not.
Zero swelling and pain this morning.
The other weird thing is that I get a migraine (officially dx'd now too) if my heart rate goes over about 150 exercising and since it usually bounces all over the place I spend the majority of my workouts staring at my heart rate monitor read out to make sure i don't push too hard.  I have gone over 150 every single workout this year.
Until i didn't.
this morning, I didn't break 150 AND i took my treadmill faster than I usually do.
hmmmmmmmmm


Then Dominic.
Dominic has been under chiropractic care for 7 years.  The doc we see right now is a fellow special needs parent and totally gets us.  Dominic is tricky - he wiggles, and says OW whenever even touched, and hunches his shoulders and is generally pretty loud and uncooperative.  The Liovi and the dimes as motivator have been helpful, but have never gotten us an appointment without the word "ow" said multiple times, or the refusal to be adjusted.

Today I went first, and Dominic hung out in the waiting room playing on my phone. Doc got halfway through me and said "Wow, he's quiet today".  So I told him about the socks.  Then we brought Dominic in and he didn't make a peep the ENTIRE fricking time.  He allowed all the adjustment without a sound. No "Ow", nothing.
Doc was slackjawed.
And I had to ... i asked him if his socks were knocked off.  (I'm such a brat).

Anyway, time will tell how these do for us. At the moment, we're really really impressed.  If you're interested in more info, send me a note and i'll get you connected up (these are apparently really good for things like edema and diabetic neuropathy and chronic pain... ).     If you're local to me, I'll be putting a big order in sometime in the next few weeks and am happy to order a pair or two for you at my cost.

Tuesday, February 27, 2018

Magic Bullet Vs. A tool to go in the Toolbox



Treating autism is a weird journey.

First you have the fact that the etiology of autism varies by child.  So every kid's causative factor or tipping point event is going to be different, and that means that every kids treatments will be different. This is absolutely maddening and some days devastating - when you see a tool that works for someone else either not work for your kid or actually harm them.

Then you have the problem of the doctors.  The ones who are well versed in the weirdness of treating autism RARELY take any for of insurance, and the testing and treatments they offer are also very rarely covered by insurance.  We are personally out of pocket over half a million dollars at this point between therapies and travel (remember the 10 day trip to mexico to do HBOT?) and supplements (at one point we were averaging $900/mo in supplements alone).  We are very very fortunate that not only do I have a solid primary job, I also get paid (which amazes me) to be Dominic's CNA because of the particular medicaid waiver he is on. His disability is severe enough that the state pays me to parent.  Blows my mind.  I take it because we don't leave resources on the table.

Then you have the near constant churn of tools, therapies and products.  Many of them are presented by their manufacturers as THE ANSWER, and for many autism families they do well.  Those things that we've used successfully over the years and that remain in my ToolBox are:

IonCleanse by AMD footbaths
Restore prebiotic
Essential oils, anti viral herbals, and immune boosting vitamins
Chiropractic adjustments
Reflex integration (we've used an OT who was a Brain balance person who IS becoming a Musgatova person)
Intense speech therapy
PMB Hemp oil 
PEAPure (anti inflammatory out of Europe)
ABA (we still use the tools from our time at Alpine)
Dorfman Dyspraxia protocol (i pulse this about once a year)

Then there's the discarded tools - the ones that we used that no longer serve us for one reason or another, OR ones that we tried and massively tanked on, which I'm not going to list because we tried them, didn't mesh well, and moved on.

I was talking with one of my peers a few days back - An autism mama of a teenager, who has been in the trenches over a decade at this point. As have we.  We talked about how it seems ALL of the sudden there's a TON of new things for Autism families to try, and all of them are supposed to be  --MIRACLES!!!!

They are things like Liovi brand yogurt (we're just getting started on it, and I'm really impressed with Dominic's shift in compliance levels), The anti androgen protocol (been on about 6 weeks, getting ready to taper off. Didn't see anything bad, also didn't see anything amazing), Magic socks (this one is new, our first pairs will arrive soon. I'm very intrigued from a sensory and reflex stand point.  My aforementioned friend says "they're weird but they work"), some algae called Rens (that I literally know nothing about but the name), a plethora of nutritional stuff - Zennoa is on my radar, but my radar is F.U.L.L...

I do not expect any of these to be a magic bullet. I expect about half of them to have positive results, and maybe of those one or two will end up in my forever tool box.   When you've been in the trenches as long as we have (Dominic regressed around a decade ago, shortly after his third birthday.  Thats sobering to say), you rarely even get excited about anything, you document like crazy and you hope.  Hope is the only thing that we have going for us many days.

Monday, February 26, 2018

Scrambled eggs

Dominic's breakfast *for years* has been 3 hard fried eggs and a  bowl of oatmeal with dried fruit and honey in it.  A week or so ago, I offered him scrambled eggs because Rod and I were having them and I didn't want to do his fried ones separately. He was a total fan. It might have had something to do with the manchego cheese, which since it is made from sheeps milk doesn't trigger his dairy sensitivity.

Then the following Monday, he and his OT Miss Alyssa made egg cups, with sausage, broccoli and beaten eggs in muffin tins.  We use these as grab and go breakfasts.  There was extra egg mix so for dinner that evening I had him (because he'd been cooking anyway) just scramble what was left and eat it. He LOVED it.  To the point that he's been asking for scrambled eggs quite often.

ANd not just for breakfast.

Yesterday at 3:40 he asked for scrambled eggs, so i told him he could make some if he wanted to.  It still takes a good bit of verbal cueing to accomplish this sort of task, and I wanted to give you all an idea what that looks like.  And for the record, I am calling this successful because of the desire + focus + attendance to task + follow through.  And there were some funny asides, too.

Video 1 - my comment here is for those of you who've never cracked a duck egg before.  You really do have to hit it that hard, the shells are super thick compared to chicken eggs from the store.  To the point that if he ever does need to crack a store bought chicken egg, there's going to be egg everywhere. 



Video 2 - He was struggling to locate a whisk here and attempted whisking with assorted other tools before he got squared away.  The other voice you hear in the background is our roommate, Tim.


video 3 - This made me laugh when he decided that the rice steamer needed a towel.  I love his incredible focus on grating that manchego cheese, and how careful he was with the grater. I'm so glad i don't have a box grater because i'm sure he would grate his knuckles on one of those.



So the next thing I will be doing is fading myself and the verbal cues out.  Given what I know, that will be a slow process.  But for now - we are calling this a win.  And since my focus is on creating an independent human being - Being able to fix and feed himself a hot meal is a HUGE WIN!