Clean bedding

 How many times a week do you have to wash all your bedding? Once? Twice? I swear Jason has a sixth sense that we have clean bedding and he smears something all over them. Most the time it's poop or pee. Sometimes it's cereal or cheese. Sigh....what do you do???

Interesting Correlation

Jason had his immunizations on Thursday. Just had a thought that would’ve another correlation for my MIA theory. He’s been super agitated since Thursday. Not sleeping until quite late. He was up stimming until 3:30am last night. 

My theory is his immune system is heightened and this is causing the inflammation to heighten in his brain. Thus causing more severe autistic traits, agitation, aggressive behaviors.

Thus the necessity of the Epidiolex, but also thinking that the marijuana will help increase the anti inflammatory properties of the CBD. 

Still working on getting him a doctors note for cannabis, hoping these morning inspirations will get us closer to it.

Well, I’m going to try again. There are so many little things that Jason is doing that I want to document them here.  As my previous post suggested I want to get Jason a medical cannabis card. It will happen someday.  We did however succeed in getting him Epidiolex. It took being super irritating to the neurologist but we finally have him on it. Epidiolex is a synthetic CBD. Yes I know “synthetic....aaaaa....scary!” First off Jason was on a organic CBD that my friend Heather sells at restoreskinbalance.com .  He was up to 2000 mg/2 oz and took 2.5mls every night. Now he’s on 1.8 mls of 100mg/ml 2/day (Don’t completely quote me on this but I believe he is getting 4 times the amount he was before, and because it’s synthetic he is getting the full dose.)

The last 2 months Jason’s been making baby step after baby step. He’s understanding that communication is good and possible. He’s been potty training and he is understanding what the toilet is for as well as going right there if caught going potty somewhere else. He’s been mastering a few programs that I thought he’d be working on forever. He now puts deodorant independently on one armpit and then puts the lid on. He will hold the tooth brush in his mouth for 30 seconds and keep his hand on it. He will play at the park willingly for 10 minutes as long as it’s not crazy hot outside. He consistently uses a fork or spoon when eating. 

So many things!!! I know they don’t seem like much to the neuro typical mom, but this is leaps and strides for Jason.

They have discovered at ABA that he doesn’t care about matching unless it has valid meaning to him. So they’ve changed matching from the general vocabulary of animals  and cups and plates and chairs....to Mt. Dew, Capri Suns, crainsins, taco meat, cheese, tomatoes....etc.  

So today they walked around the office and he had to “mand” his drink from just about everyone. (This basically means he pointed to the MtDew picture.) Not only does this help to reinstall this in his brain, but he gets praise from everyone in the office. He was teasing his previous aide quite a bit. He LOVES Kasey and I’m sure he misses his one on one time with her. But he’d walk past her cubical and then run in at her and giggle in her face. You can’t help grinning when this boy wants you to smile.

He pooped in the toilet without anyone telling him to. He even came into the house from the backyard to do so. Brett realized this because Jason went to walk back outside and had messy underpants.  He hasn’t learned how to wipe yet. When Brett took him into the bathroom to take care of the problem Brett found the evidence. Who knew poop could make parents so happy?

After being smothered in sweet Jason kisses I’m a pretty happy mama today.

My Why

When Jason was 18 months old he quit sleeping. By that statement I don't mean he went from a normal sleep pattern to a few hours less, or waking up here and there.  He went from 12 hours of sleep a night to 3 hour blocks.  He would sleep for 3 hours and then be up and running for about 5 more.  This was the beginning of our journey into Autism.

I would tell people that Jason bounced off the walls.  They would tell me all 18 month old children "bounced off the walls."  I meant he literally, not figuratively, bounced off the walls.  He would run in his room, hit one wall, turn around hit the other wall, turn around hit the other wall.  Jason is a sensory seeker of great proportions.  Sitting still and being quiet is something that seems to be a painful situation for him.

As I started to understand that this was our life I used to joke about wanting to give Jason Medicinal Marijuana.  I joked about it, but in the back of my mind I knew it would be something I would try eventually.  As he has aged we have tried a number of pharmaceuticals.  He is on 10 separate medicines daily to handle his many Autism concerns such as, anxiety, depression, and sleeping issues.

When he was six years old he began having seizures.  That was one of the hardest nights I've experienced.  His seizures have now become part of our life, and we handle them like we do everything else.  One day at a time.

What do these things have to do with Medical Marijuana?  I'll tell you.  When he was 9 years old I was promoting my massage business at a small business fair.  A friend introduced me to my friends Heather and Scott.  They started a company selling HEMP CBD's. They sold them in a couple different options, but with Jason we decided to use the sublingual drops.   I was afraid of trying this product, because I live in a state where Medical Marijuana is not an option.  I spoke to a few friends that are police officers as well as the Chief of Police in my city.  They advised me that it wasn't illegal but wasn't scientifically proven to help, so to be careful to look at it skeptically.

We started Jason at a super low dose of 125 mg.  Being that I was giving this to my nonverbal son I wanted to go slowly.  The first dose I gave to myself.  I didn't want to give him something that would make him sick or loopy so I tested it myself.  Then we gave it to him.  As his mother I was able to see a few improvements but not a ton.  So we upped his dosage to 250mg, than 500mg, eventually sitting at 750mg for a few months. With every dose we saw more and more strides.

Jason used to make progress in bulk.  It was as if he would hang out in a plateau for a while and then make 12 new discoveries and then plateau for a while longer and then make 15 new improvements.  What I noticed with him now was that he seemed to be making normal progression in him improvements.  It was as if his brain was now allowed to grow gradually instead of having to fight so hard for every stride.

In February or March of 2017 I was on Facebook.  This Article came across my feed.  I think it was about 11:00 pm and I was bouncing up and down in my bed with a big smile on my face.  My husband thought I had lost my mind.  The article read that Chinese scientists had been able to recreate the effects of Severe Autism in monkeys.  What they found that if the mother has something that causes her immune system to be heightened in the second trimester it can cause an autoimmune response in the child that will then cause massive inflammation of the brain.  My brain did what a mamas brain does best and connections were made in a heart beat.

My husband read the article and said, "super cool.....but why are you bouncing up and down about this."

I told him, "CBD is a natural anti-inflammatory that naturally passes through the blood brain barrier."  I was so excited that I had to slow down and repeat it a couple times.  The next day we doubled his CBD's to 1500's.  We are now at 2000mgs and have been for a while.

Some would think this is a snake oil effect.  Jason has been on CBD for almost 2 years now.  We have had two experiences with him going without.  Summer 2017 we went camping with my family.  We had just picked up a new bottle of CBD's. We were in a tent trailer and when Jason was given his CBD the lid wasn't put on tightly.  Jason was up all night and was bouncing back and forth in the trailer.  He spilled the whole thing out on the counter.  So he went about 2 weeks without CBD and it was one of the hardest months ever.  By the time he went back to school I was haggard and exhausted.

The next time he went without his CBD was this summer.  I had a week that I worked almost every night.  Jason started to be really aggressive.  He turned into a little angry man, choking, screaming, crying, scratching, jumping on you.  It was a rough week.  I was concerned this was going to be our new normal until I asked Brett if we were out of CBD.  Of course we were and had been for about a week.  I got him his oil on Friday, but by the time I got home he was asleep.  So he didn't get a dose until Saturday.  Sunday the Nurse Practitioner Jason sees and does all his pharmaceutical meds prescriptions saw him choke me in church.  I took him out into the foyer and she followed.  She was concerned about possible complications from his long use of meds.  I told her I thought it was the CBD, but she could check on us this week.  She called Tuesday and told me what her concern was, but by then Jason was back to normal.  He was back to my sweet, happy boy.  Even his ABA therapists were able to see the difference in him.

Now I know you think, why would you put him on Marijuana if Hemp CBD is working.  The info out there was that Hemp isn't as potent and Marijuana and that using the whole plant will make a huge difference.  In July of this year my Facebook feed dropped this article on me.  Basically they used CBD in a study with Children with Autism.  They said that their is an 80% improvement in behaviors across the board.  The 20% of children that didn't show marked improvement there were no negative side affects. Then they did a 20:1 ratio of CBD:THC.  The children that were nonverbal showed VAST improvements.  What??  This is my why.

There is a limited number of years where we can affect the development of the brain.  Jason just turned 11 years old.  His years are dwindling and I'm hopeful that Utah will be legalizing Cannabis for medicinal use soon enough for us to be able to help him, even if it's just a little bit.  Please help us to get this legalized quickly so that Jason has a chance for more improvement.

Who says it's cold?

This was the end of February.  He loved being outside.  It was just warm enough to be out during the day.  I had a bit of a hard time getting him inside though.  Trampoline's are too much fun.

Autism Laws

This is my picture for the Autism Law SB57 that passed in Utah this year.  It's not a perfect law but it's a start.

Who needs teeth?

Jason pulled his first tooth.  The sad thing was it wasn't even loose.  It must have been hurting him, because he'd been messing with it for a while.  He got off the bus covered in blood, and I just assumed his gums had been bugging him and he was picking.  You should have seen the look on the bus aids face, poor thing.  When I got him inside I noticed the tooth missing.  Sometimes Mom doesn't understand so you just have to take care of things yourself.