Drug Study-- Observations, Friday 4/24

My husband and I are so eager for this medicine to work.  Are we over expectant of changes?

TsukiMoon has been on this medicine for exactly one week.  The drug is supposed to help a select group children who have autism with their symptoms.  Not foreseen to help all children with autism the question is our son in the category which is possitively effected?  What I can say with surety is that there has been a difference.  Is it better?  Initially it seemed so, but there also seems like there is some regression.

What could be going on?  Does TsukiMoon feel the changes and is scared of the new behaviors and wants to go back to something that he is comfortable with?  Part of the problem with my analysis is that I'm on a retreat this weekend and even though he is super happy to have a weekend with only him and his dad, it is a change, never an easy transition.  

The past week he has been so excited, so energetic that he hasn't done his usual routine of going to the toilet 3 times before going to bed, leading to a wet bed everynight this week.  Before this I would have said that we were about done with bed wetting.

Also in the past two days there has been some language regression.  A big deal becasue we have worked so hard over the past year to bring his langauge up.  He has gone from an evaluated 4/5 year-old level to a neurotypical 8/9 year-old level-- in one year.  To go back to 2 and 3 word sentences would we heart-breaking

This autism thing can be so challenging.  What works?  It is like we are shooting in the dark to find solutions.  There is so little information.  We are making it up on what seems like a best guess. 

Drug Study-- Update, Does This Stuff Work?

We are luckily part of a drug trial at Stanford University, of vasopressin, a possible solution to help kids with autism.  We had 4 weeks where we didn't know if TsukiMoon, our son, was taking a placebo or the real medicine.  Nothing changed and we correctly thought that he was on a placebo.  At the end of the 4 weeks we had the option to continue with the real thing.  We left the decision up to TsukiMoon.  With visions of legos in his head, he gets $20 a visit, he said yes.

He has been taking Vasopressin for 4 days and the impact on his behavior has been immediate.  My husband are careful to be too excited about the impact but we are making jokes about telling the researchers that we lost the bottles of meds at the end of the 4 weeks (we have to give back what is left over at the end).  We are also tentative not to have whatever is the opposite to the "placebo effect."  Are we over optimistic because we know this is the real thing, but something has changed.

In the past 4 days we have see him do things that we have never seen.  TsukiMoon is more animated, connected, better eye contact-- basically happier.  He has run up and asked to play with other kids on the playground before school this morning.  That's never happened.  He eager to move his body, running from place to place.  Mostly he has been low energy, again-- new.

He has what now seems like habitualized behavior, like being resistant to change.  At bedtime it seems like he pushes back because that's what he has always done, but the level of resistance is different.  

I'm careful to overstate anything.  The parents with children with autism don't need false hopes.  My understanding, but I'm not a doctor, is this medicine won't work for all people with autism.  There might be 100 genes that create a person with autism.  The causes for one person might not be the reason for another.  I'm hopeful.

The effects of this drug makes me see the person my boy might have been.

Profile

I'm going to write two Profiles; one which is gives the quick explanation, the second which longer for anyone who wants more information.  The longer profile will be written over time in chapter form.

Here is the basic profile information.

In September 2013 we were given a diagnosis of Autism Spectrum Disorder (ASD) for our only son.  He was 7 years old at the time, in second grade.  We were devastated as parents.  It felt like the Tom Hanks line in the movie Apollo 13, "we just lost the moon."  Any dreams that we had for him seemed gone.  (In time we have seen ASD as a good thing and the diagnosis is a blessing.)

As we struggled with the emotions my husband (Mr. TsukiMoon  and I quickly mobilized to do what ever possible to help TsukiMoon overcome any and all disabilities.  We did this because TsukiMoon was unhappy. his challenges countered the things he wanted.  His gifts are plenty but disabilities hindered any abilities.  We had to do something.  

A year later our consistent and constant push to address challenges started to reap fruit.  TsukiMoon had better eye contact, more language, can read emotions in others better, is empathic, and can calm himself most times.  There have been so many changes to our many interventions that I decided to create a blog about what works.

Another reason for the blog is that this diagnosis has been a secret, only our most trusted allies know, there are grandparents that don't know.  When I kept such a large secret from most people it felt like living a lie.  It is important to maintain the secret and live this lifestyle of lying through omission because I fully believe that TsukiMoon will become symptom free of the challenging aspects of ASD and exibit the characteristics that are the best parts of autism.  His gifts will flourish and he will be integrated contributor to the Earth.  Basically what we all want for ourselves and our children.

Napkin Notes-- Star Wars Teaser, Chewie We're Home

Someone must have been expecting them.

Napkin Notes--Star Wars Teaser, Kylo Ren

The dark side always wants something. 

Napkin Notes-- Star Wars Teaser Series, BB-8

"He's so cute!" Was the exclamation of TsukiMoon when he saw his napkin. 

How The Walking Dead Healed Me

I make a daily "Napkin Note for our son, TsukiMoon's lunchbox.  He is in third grade so this napkin isn't appropriate for him.  I made it for myself.

When TsukiMoon was diagnosed with Autism Spectrum Disorder (ASD) a year and half ago I discovered The Walking Dead.  I watched hours repeatedly.  Bingeing for hours, walling myself in the back room, stuck in a dark place.  The show touched me deep inside and healed my heart.  It has taken awhile to figure out why it talked to me.

When we got the diagnosis about TsukiMoon, we quickly adapted.  We knew we were running against a clock of brain flexibility.  We instantly put lots of interventions in place.  They all paid off.  TsukiMoon went from an evaluation by the speech and language pathologist of: a 4/5 year old in understanding and use of language to neurotypical, at age level-- 8/9 year old.  In one year.  The pathologist said she has never had a child progress so quickly and said it was thanks to us, his parents.

While I was doing all the things the pathologist wanted of us, I felt like Rick Grimes.  I woke up in a new world that had no correspondence to the pervious one.  All I had was the person I once was.  How did that person fit this new creation?  It became an off-script life, a long-departed reality from once was.

All the ways I once related to others didn't apply anymore.  What seemed important disappeared and my life and that of my husband's was repositioned with new dedication.

This life is better.  Not lower in stress, but we live closer to the bone; colors are brighter, the sun is stronger.  TsukiMoon's life is undeniably better.  We have gotten off his back where it was detrimental.  There is a push in our area, living in the shadow of Stanford University, to get the most out of our children.  Tiger Mother style if need be.  Now we help him in all the area's that are needed; lots of touch, hugs and kisses.  Big smiles to meet a gaze that doesn't always fall on our faces yet we show love with napkin notes and games.  What we call interventions, are plain engagement to Tsukimoon.  We shine a bright lights on his moon-lit world.

I still keep up with The Walking Dead, but it doesn't speak to me in the same way because it has already cleared the murk that was once my life.

Travel as Therapy-- San Francisco

City Life as depicted at Coit Tower

For spring break we got an Airbnb in San Francisco for an easy break.  It was 3 quick nights in the city, but it was much needed down time for all.  We live close to the city, and even as some people commute to the city, for us it is a bit too far for an easy hang-out.  Most of our trips have been to do something specific, then come back home.  It was nice to wake up in the city and immediately get out the door.

As much as it would be nice to go to a  enjoy a resort, they are so easy, like they should be-- they are that way by design, it doesn't expand TsukiMoon's abilities.  He needs to be able to have lots of practice in new challenges.  Navigating a city we barely know was a challenge for everyone, but that is good, that is the point.  It is hard for him to see his parents trying to figure out how to get around, make mistakes, and solve them.  We roll model for him how to structure a day when there is no, to little knowledge of place, yet we still need to accomplish navigation and feeding ourselves, and possibly find something fun to do.  

TsukiMoon is much better then when he was younger; verbal, calmer.  Thank God he doesn't bite anymore-- that was tough.  As rough as it was no one ever saw an issue: he was a problem instead of there being an issue.  Maybe we would have him checked out earlier then at 7 but there was very little money at that time.  So many regrets, but a lot went right too.

I told my husband that I had no goals for our San Francisco holiday.  I wanted to wander slowly around the city.  Which we did, walking 10 miles or more each day.  It was a trial for TsukiMoon to walk the distance but that was easier then the exposure to just new things.  Every new site was a struggle to the senses.  

TsukiMoon can get stuck in a loop where there is only one way to do something.  This meant that my objective of easy exploration and his were at odds.  Ultimately this is a good thing.  TsukiMoon needs to learn how to be flexible and accepting of others.  There were some tough moments.  On top of the incessant pushing to monitor all of his parents actions, he feels he needs to keep us inline.  Parents have this annoying habit of going off script.  He challenged any ideas for the next curiosity.  This was all too much and he starts his frequent touching, prodding, and hanging on us.

Eventually my husband and I felt poked.  It maxed our bump-factor.  So called "down-time" aka vacation, becomes work.  That's ok of course because we are his parents, this is our job.  Luckily we have each other to break-down to and pick up the slack when the other needs a break from TsukiMoon.  We couldn't do this without the other.  If we both need a break that's a good time for a screen or to make a pit-stop at Starbucks.

A quick moment to sing the praises of our relationship.  I would have broken with out Mr. TsukiMoon.  I got PTSD from taking care of TsukiMoon when he was younger and that, lack of sleep, and not knowing what was going on, caused a break down about every 18 months where I would need to ask for help.  Mr. TsukiMoon was always there.  The same thing goes for me, Mr. TsukiMoon works 80 hour weeks then comes home and dedicates his time to giving Boo all the attention that he requires.  Sometimes even he, who has amazing reserves can start to crack.

Ultimately this level of fun adventure creates change.   TsukiMoondoes become more flexible, better at talking with strangers, and being in new places.  Autism is part of this family but it doesn't have to rule our clan.

Follow me on Instagram @TsukiMoonMom

Drug Study-- Vasopressin

I am not a doctor but this is what I know about vesopressin, the medicine that my son is on.  Why it is being used as a "cure" for autism?  With my basic understanding I will try to explain.

Vesopressin is a naturally occurring neuropeptide that exists in the body.  "A neuropeptide is a small protein-like molecules that are used by neurons to communicate with each other.  They are neuronal signaling molecules that influence the activity of the brain in specific ways." Wikipedia.

It is similar to oxytocin.  There have been studies about whether oxytocin helps autism.  The challenge with oxytocin is that even if the body gets flooded with it, if the individual doesn't have the receptors for it, oxytocin won't help.  Meaning: you might have a key but if there are no locks for that type key doesn't matter how many identical keys you have, the door won't open.  The primate social brain does have a lot of receptors for vesopressin but less for oxytocin. 

It is known that in the neurotypical brain vesopressin enhances memory for happy and angry social information.  Which means that people are more "connected" to their experiences.  It also enhances identification of social words and cooperative behavior.  All good stuff.

Vesopressin has been used to treat people with post-stroke aphasia.  (Aphasia: a langauge disorder that affects a person's ability to communicate.)  It has also been shown to help short and long term memory for people suffering from central diabetes insipidus, a rare condition that involves extreme thirst and excessive urination.  

From Wikipedia:  "Vesopressin has two primary functions in the body; to retain water and constrict blood vessels" which lead to a bunch of day-to-day running of the body.

The questions are the vesopressin levels altered in children with ASD?  Is vesopressin effective in enhancing social functioning in children with ASD.

My understanding is there might be 100 gene issues which lead to a child who we call an ASD kid.  What the study is looking for is a sub-set of kids who have genes that cause lower-vesopressin amounts in their body.  This intervention can help these kids but won't be able to address all children with ASD because they might have normal amounts in their blood.  That classic saying, "If you met one child with ASD, you have met ONE child with ASD."  When solutions come they will need to come in several different forms.

Does our son have lowered amounts of vesopressin in his body?  I don't know but I have to say that I hope that this drug helps him.  If this helps we know part of the cause.  This is a drug trial, it is not FDA approved medicine for treating ASD.  It will leave us at the end of the 4 weeks wondering how to increase the levels of vesopressin in TsukiMoon naturally.  We will have something concrete and part of the solution.

Drug Study--Update

Boo

We got the news on Friday that we had received a placebo for the past 4 weeks.  This was no surprise to anyone, including TsukiMoon.  Dr. Harden who's running the trial asked, "what do you think you got?"  Mr. TsukiMoon, TsukiMoon, me, and Robin, the study liaison, where all in the room with the doctor.  The doctor immediately followed up with another question, "any less anxiety?"  To which Tsuki answered, "No."  Robin made a small frown of sadness when he said that. 

These issues are real.  Our son is sad and knows that he is sad.  He knows that he has a hard time leaving us, just to go to school.  It would be nice to have some solutions.  We do a lot of interventions that are paying off making him a happier, better integrated person but TsukiMoon has a ways to go to overcome fear.

TsukiMoon found out that he gets paid $20 each visit, shortly before our meeting with Dr. Harden.  Robin ask our son if he what would he think if he found out he was using the placebo.  (We have had the placebo we have the option of continuing with the real medicine.)  To which TsukiMoon answered, "yes!  Because then I get $80 more dollars!"  (Visit Robin once a week for the next 4 weeks, just like we did on the placebo.  I can see visions of Legos dancing in his head.)  When Dr. Harden asked if we would like to continue with the real thing after finding out about the placebo, Mr. TsukiMoon and I looked at our son and let him answer the question.  He answered, "Yes"

No small thing to say yes.  He has an hour and half of testing, a weekly blood draw, a weekly physical check-up, and blasting himself up the nose twice a day with meds.  But he is better and better at the blood draw, the trickiest thing for him (understandably).

So here we go.

Drug Study-- Last Week

We are in the last week of a short 4 week drug trail.  Tomorrow afternoon we will know if we recieved a placebo or the real thing.

My personal belief is that we got the placebo, if we got the actual drug it must be the most mild intervention.  TsukiMoon was a little more social but how much is that from all the interventions that we do; social class, and overcoming so much at school to where he now feels confidence?

If we did have the saline spray that will mean that we get to try the real medicine for the next 4 weeks.  I'm excited for the opportunity.

Napkin Notes-- Bad Kitty India Series

TsukiMoon is home sick today so, no standard napkin note. Instead here is a series I did on cloth today for a friend. She really liked the Bad Kitty Series I did before spring break and wanted some for herself.  I had to design 2 more to fill the 6 napkins that come in a pack from Sur la Table. The 2 on the end are new. On the back of the Egypt napkin it says, " NOT Cows!"

Here are how the napkins came from the store.

Update:

At the urging of a friend I sent the picture at the top to Nick Bruel, the creator of "Bad Kitty," and he WROTE BACK!

This is what he wrote:

"I don't like these.  I LOVE them.  You've done a terrific job of capturing
Kitty's expressions, which is not so easy to do.

Thank you very much for sharing these with me.  You're quite talented.

Be well,

Nick"

How cool is that? Definitely made my day!

Napkin Notes-- Space Marine, 4/13

I made this by request-- and by the way, get ready for a lot of Warhammer 40K pictues over the next few days.  TsukiMoon has filled up the queue with creatures and machines that he wants from the game.  

These pictures will be a challenge for me.  My drawing hand has a free flowing characteristic, these critters seem very precise to me.  I'm not proficent at the art in cartoons and graphic novels.  It will be a best effort but probably be a few napkins that will get scrapped for the final version.  :-P

We will learn together.  ;-)

Napkin notes-- Bad Kitty celebrates Holi 4/2

Bad Kitty is having a hard time feeling the joy of Holi. 

Drug Study--Observations 4/14

This might be a slow working drug (or it could be no drug at all 😉).

TsukiMoon seems happier, more energetic, but he has very little understanding the impact of his behavior on others. Then again that is not what this medicine addresses. It supposedly reduces anxiety and anger. 

I don't know how much of TsukiMoon's behavior is caused by anxiety its a fair bit though. He generally doesn't express much anger; no temper tantrums, very little hitting (maybe every 6-8 weeks, oriented at his dad and not me).

There has been a subtle change in confidence but how much of this is because he feels capable in school recently. All the extra classes with the speech and langage pathologist have paid off. His teacher asked TsukiMoon to read his "persuasive writing" assignment in front of the class on Monday because he did such a great job.  He felt a lot of pride to be selected. 

He is challenged by going up to other kids though. He is usually on the side or if he is particapating in a game and wanders away, no one goes and gets him, it's more like the other kids are playing beside him instead of being attached in any way.  It would be nice if this could change

Napkin Notes-- Bad Kitty at the Taj Mahal 4/1

Bad Kitty is not feeling the love.