Parenting Peace Found in Unexpected Places

My husband is on a 10 day business trip.  If I don't keep our son, TsukiMoon active and interested, he starts to act out.  It's not good for either of us.  A terrible spiral starts where we begin to feed on each other.

That is as awful as it sounds.  It tears me up on the inside and breaks me down as a person.  I hate it.  It has taken me a bit to understand the cure but we must, MUST; get out, call people, set play dates, and go to events around town.  If I work these strategies peace and love are maintained.

The only other cure if I don't find enjoyment out of the house is the screen.  It's not an option for me but TsukiMoon would loves it.  Endless YouTube videos to research his latest interest is at the top of the list of "great things."  He quests ceaselessly for the next video that gives information about the latest interest.   It's not all bad, but hours and hours are too much.

We went to a thing at the school called Math Circles.  It started late in the evening, 7pm, but it is worth a spun up kid will go to bed a little later if it means we like each other.  As always it is a struggle to get him out the door.  There were lots of: "I don't want to go.  Do we have to?  I don't want to go."  In a unpleasantly whinny voice.

I got him in the car, cooing, "Yes, Yes I know, your mom is curious.  It's a terrible thing for you isn't it?"

This is the first.  I am sensitive to anything that feels like "pushing my kid."  For me to accept the diagnosis of autism meant that I had to let go of any "what ifs?"  To just accept him.  To leave the house to go to an academic event seemed to be skating along on "what could be,"  but luckily most of my high school and college math has been forgotten so it was just about fun in learning.

Math Circles is a education outreach by mathematicians to share their love of math with kids.  The kids can be taught mathematically complicated concepts that they might not get in school, but which are accessible to their age.

Last night we learned Fibonacci's number in a hands on way.  Parents and kids alike learned how to tackle a math proof, something I haven't done in years.  It was good that I couldn't help my son because it allowed us to learn side-by-side.  He saw his mom struggle but enjoy the process.  I hope it was a "roll-model" moment, showing it's ok to be uncomfortable while I work towards an answer.

We left 10 minutes to the end because the little guy was done.  The goal was to keep the whole event fun, it was easy to walk out.  TsukiMoon asked me what did I like about Math Circles.  "I don't get to use math proofs in my daily life so it was fun to play around and figure one out."

He responded with, "yeah I had fun but it would be better if wasn't about math."  The cool demeanor was different when his dad called. TsukiMoon told him what a great time he had.  He said he got to see his friends (just a quick break to reflect on just that moment "friends," he feels he has friends!) and to play around.  He was excited to share.

Like I state in most posts, life for TsukiMoon to learn is really about time.  He might catch on to things more slowly then his neuro-typical peers but he does get there.  Besides it's not like he isn't learning other things while taking in what his peers know too.  He's smart and will get there, wherever "there" is.  The most important thing is that he is happy and we are happy together.  Especially when I don't have back-up.

"Your Son is So Spoiled"

All families are messy.  In our case it is our extended generations that dumbfound us with awful behavior.  That was brought up this weekend when my parents visited my dad's cousin and her husband, we'll call them Jen and Harry.

I like these cousins, especially Harry.  Both my husband and I do.  They are unapologetically smart and have strong opinions.  I might not agree with everything they say but it is a thoughtful discussion; science based and analytical.  We always make sure to visit them when we are in the area.

Recently, the last 15 years ;-) Jen has become increasingly antagonistic towards my mother.  I don't know why, but because of her and others in my father's family, my mother won't attend family events anymore.  She is happy to send my dad and get all the family news from him.

This weekend my folks were invited to visit Jen and Harry to see their new house.  Jen (not in front of my dad) lit into my mother about me and my son, TsukiMoon.  "Is your daughter still not working?"  "I'm worried about TsukiMoon, he is very spoiled." She hasn't seen him in 3 years.  "Why is TsukiMoon is public school instead of his private school?"  Probing for scandal.  Then a bunch other stuff oriented at my mom.

My mom understandably wanted to download after the visit.  My mother, who must be on the spectrum, has very few friends who would have been more appropriate to share with but she doesn't.  Even if the more grown-up thing to do is not triangulate Jen's comments to me, I am glad to know the sentiment exists.  I wouldn't want to expose my son to her judgement anymore.

After I got off the phone with my mom I needed talk.  So much swirling around my mind; anger, fear, alienation.  My husband, Mr. TsukiMoon was on in 3rd world on a business trip-- couldn't contact him.  I sat with the feelings and worked it out.

I see the memes about parents of autistic children being judged as bad parents and their children as spoiled on Twitter, Instagram that end with an attitude of, well, basically, "fuck you and your judgement."  This affect is probably felt by all parents of these type of kids.

We have been the object of side-ways glances for our choices as parents when we are out with our son.  We experienced general dislike of other parents for our son.  I remember in an "Age 3" preschool class a parent saying, "That's no surprise, we are talking about TsukiMoon."  The pain was acute.  I walked around the corner to cry.  My relatives have never said anything.  We live thousands of miles from my family which is probably why it hasn't come up earlier.

Jen's cracks had an impact.  I do have shame of not working, even though I know my work has a direct impact on our son's ability in everything.  I know that our son comes across to people as spoiled when he is having a meltdown.  That we jump through many, many hoops to pave the road in front of him, picking our battles carefully.

People don't see how much how many life skills we have to walk our son through.  We always anticipate his adult life, we teach him skills that are not even on the radar of other parents.  We worry about his ability to keep his area clean, himself, whether he can feed himself as an adult.  No one see this work, this anxiety.

There is a saying, "Acceptance is the solution to all my problems."  What I am accepting with Jen's remarks is that people I wish were part of my family are just not.  They are not safe for me or my son.  Any expectations have to be let go.  It leaves me with the feeling that the inner-circle of what I call family is terrible small; my husband, son, and parents.

I guess this is where, "Family of Choice," comes in.  I do have a couple of select friends who support me.  This incident with Jen has helped to bring clear vision the importance of growing relationships with the people are trustworthy.  My family of choice.

Napkin Notes: 2 days left of school

Napkin Notes: 3 days left of school

Napkin Notes: 4 more days of school left

Napkin Notes: 5 Days left of school

Out of the "Last days of School" series this is the one that seems the one that doesn't fit. I needed to come up with a different animal the invoked a more calligraphy style. Don't know what that might be though.  Ideas? 

Napkin Notes: 6 days of school left

End of School Or Easy Street

So much of autism has been thinking, ‘I could do more,’ or worse looking back with the thought, ‘could I have done more. . .’  “If I had only done _______, then everything would be better.”    “If only I had known the impact of stress during pregnancy I would have done more yoga.”   So much second guessing.  If I put all the garbage aside our son, TsukiMoon, was born this way and I’ve done a great job.  

Education is very important me.  I define it simply as a joy of learning.  Easy to say, hard to create.  Back in October 2013 when we got the diagnosis of autism spectrum disorder, I went into overdrive.  I felt like I was running against the clock of brain mechanics of the younger you are the better you can learn.

I set up a bi-weekly lessons with a speech and language pathologist, along with the classes he was already doing in occupational therapy and social class.  The work setting up schools took the most time and rigor. 

 His social skills teacher felt TsukiMoon would be better served by public school, that the environment in Private was too caustic.  She came to this conclusion during her observation of him at school showed that he was being bullied at the private school.  

She witnessed an awful experience where the other kids in his class had sticks that they were wielding “Harry Potter” style, spelling and hexing him to be unhappy.  He was so scared that he actually went up to the evaluator, a person he had never met, and asked her for help.  Amazing because he is also scared of strangers.

We really didn’t want to take him out of school to put him into another.  We balanced our desire for consistency with the need for safety and self-esteem.  We worked with the private school to create a safe place for him.  (In retrospect they didn’t do a very good job.  We really should have taken him out of that school at that time.)

Even though TsukiMoon didn’t go directly into public school I did ask for an evaluation from the school district.  Anyone can ask for an individualized learning plan (IEP) from the school district even if you got to private school or are home schooled.  I wanted the public school to be fully prepped and all interventions in place if TsukiMoon went there.

For the private school I had specialists come in and explain to the private school to explain to them what were the needs of our son.  This came out of a horrible grade year with an equally bad teacher.  The underlying message from the teacher was it’s him, not me.

Why did I do all this?  Simply, I was pissed.  I was ticked with everyone with everyone who had taught my son to that point.  From the pre-school teachers who didn’t like him (again the message was, he is a problem, instead of has a learning issue) to the people at the private school with just one exception, his kindergarten teacher who was exceptional.

My most important value is a joy of learning.  I don’t read TsukiMoon’s report cards because learning is not about grades. I can tell how well he is doing by the level of interest for school.  Grades come a few times a year, attitude I can gage everyday.

Personally I had little trust for public school was because mine failed me.  It was so bad my parents took me out of school to homeschool me because I was in 2nd grade and unable to read.  I was painfully uncomfortable in school, for this reason I was going to make public school work for us.  It had to be a great experience.  I was my son’s champion; never give up on him or let up on the people teaching him.

The public school sent representatives to observe TsukiMoon in class, several times.  We also met with at the public school many times, with a big meeting at then end of second grade, all the special-ed folks; ot, speech and langauge were there, also the psychologist, and principle.  In that meeting I asked if it was ok to attend their school for just the first week in the fall and then decide where we wanted to place our son; public or private.

Private started a week after public started so it worked our really well.  We had this slim window in which to decide.  It was a anxious week.  I don’t think I have agonized about any decision more.  At the end of the week public was the better choice.

One of the reason it was the right place was it was not as rigorous a start.  He knew many of the subjects covered in the fall.  He was able to get his feet back under him.  He needed his confidence back and redoing much of what he learned the previous year was perfect, a complete re-set.

TsukiMoon really started to fly after the Christmas holidays and started to enjoy school and learning again.  When that happened I could start stepping back from the process.  Not having to drive learning so much was a nice break.  During all the time at the private school I was jumping through any and all hoops I could find, anything to make the isolation and frustrations easier.

At public school there is none of that.  For good or bad, people have to attend or make other arrangements.  It might sound funny but I don’t have to make friends with the other mothers unless I want to.  It’s just school, parents relationships are not even necessary to the process. 

It cost us a year’s tuition because of when we took him out of the private school.  (We had a signed a contract back in Febuary and couldn’t get out of it.)  It turned out that was small price when we found a teacher worth her weight in gold at the public school.  She had a big role in the success of 3rd grade.

There were many good things about the private school but there was a simple fact that TsukiMoon was getting bullied there and wasn’t enjoying school.  When we asked about the school’s bullying policy they responded, “we don’t really talk about bullying here.”  Basically on the surface it was all nicey-nicey but it was being run like a private club where they could exclude whom ever they chose.

For that reason clinched it, we had to put our son in public school.  In the United States there is a law called “protected class.”  It means that a certain people have extra rights under the law.  The school is at a increased burden to protect a child with a disability, which autism is classified as.  

Just because a school is required by law to do extra for such people that doesn’t mean that they do.  The neighbor school had an incident of bullying the year before we enrolled TsukiMoon for letting a boy with ASD be bullied.  The principle is a good person and wants to do the right thing, he was extra diligent not to have that happen again.  This created an extra level of protection for our son.  We wanted him safe.

He was safe and happy, then on top of that he flew.  

All the Happiness One Could Want

My charger for my laptop was returned.  For several weeks it was visiting North Carolina where I went last month to help a friend.  What do bloggers do when they don’t have power?  They tweet (@ScienceyAutism).

Wonderful one-liners fill Twitter.  They reaffirm the work my husband and I are doing with our son, TsukiMoon.  Things like; “Start you child’s day with love and encouragement and end the same way. “ -- Zig Ziglar.  “The only disability in life is a bad attitude.”  --Scott Hamilton. “  “You can’t stop the waves, but you can learn how to surf.”  --Jon Kabat-Zinn  They assist the rigmarole.  Nice when I start to dream about taking some time to walk the Santiago de Compostela for a month.  

How do to create happiness out of the daily succession of tasks where the solution isn’t to run away to Spain or look for puffs of inspiration found on Twitter.  To take satisfaction in what can be mundane?

Much of life with autistic kid, especially on challenging days, can be a grind, but that is exactly where solution resides, in the dailiness.  I don’t think why I’m do something but how to have a job well done.  

Honestly, if I ask a “Why?” question it usually ends in misery.  There are no good answers that come from a why.  Think of some why questions, what do you come up with nothing good I bet.  “Why” shuts the door on potential.  It doesn’t even look at it.

“How?” is a much better question.  “How can I get this done?”  “How can I help?”  “How can I enjoy this?”  How questions create opportunity and industry.  There are endless possibilities in how.

What I have discovered, only since our son’s diagnosis, is that if I am focused on myself it only brings anguish.  If I center on others all the internal-bleak voices are silenced.

Most of my life I’ve been trying to full a goals set by society and coming up with a lot of bad answers to “why” questions.  So much of our world seems to target an outward expression to describe the inside of a person.  “Be Thin!”  “Be Rich!  “Look at me I’m happy, my pictures of Facebook say so!”  

I never had the long legs I dreamed of, there was never enough money, and I asked myself Why?  Well you must be a loser was the best answer that I came up with.

Raising an autistic child has been about: how to find the things that create happiness that money can’t buy.  For me yoga brings inner peace.  There is nothing better for me to hang out with friends.  My number one goal is to live in a a loving, peaceful home.  I take pride in personal responsibility.  This list is not sexy but deeply curing.  

Now I feel totally happy, successful, feel like I contribute to the betterment of the planet.  None of this came from more money or growing 2 inches. This is a blessing of autism, a fuller, better-lived life.  That sounds like it could be posted on Twitter. 😄

Napkin Notes- 7 Days to Summer

After I made this I realized the pelican was facing the wrong way. He is supposed to be looking left to create the number 7. Oops. ☺️

Napkin Notes- 8 Days Left of School

8 Days left of school!!

Mother's Day-- Part 2

When my husband and I had a chance to be alone on Mother's Day he gave me an new necklace.  It is from a favorite jewelry designer, Kelly Morgen.  She creates Goddess pendants inspired by mythic, Greek, and world women.  Mr. TsukiMoon gave me her Athena design.

Athena is the Greek goddess, primarily known as the goddess of wisdom and courage.  My husband chose Athena because our son, TsukiMoon, might never thank me for the hard work I have done this past year and a half but my husband felt I deserved to be recognized for the effort it took to enable our son to read and write.  

It the past year TsukiMoon, through consistent endeavor, gained the ability to understand what he reads and the skill to write.  He went from a 4/5 year old level in language to an 8/9 year old level, in line with his peers.  With these skills he can enable his own learning and wisdom.  Mr. TsukiMoon said that it was because of my consistent work our son is able to do this.  He felt my wisdom and courage enabled our son's.

What I did seems pretty straight forward; drive him 2 times a week during the school year and 3-5 times during the summer to the speech and language pathologist, Mrs. K.  Mrs. K wanted us to do an hour of homework a day. It was going to be difficult; driving was easy, an hour of homework for a 7 year old was harder.  

How can I make that much homework fun for a little kid?  That was the question I asked.  It was important for it to be fun or he wouldn't do it.  How was I going to meet that goal with child who was; turned off by school, writing, or even holding a pencil?

First we needed the right tools.  I went to Amazon and bought two kinds of pencils; Faber-Castell jumbo grip Ecopencils and Dixon Tri-conderoga pencils.  These were the same pencils used at the speech and language pathologist.  They are triangular and easier to hold then round pencils.  TsukiMoon preferred the Ecopencils.  Faber-Castell also makes triangular jumbo grip colored pencils and markers.  I also got a lap board.

I put the lap board and some pencils in the car.  Every time we got in the car to go somewhere he had to practice is writing before the car could move.  He could trace over the letters that he had worked on class, once through all the pages.  It took about 5 minutes, but this isn't enough to create an hour of work.

Years ago I read an article about the importance of movement while learning.  It said that for very small children only have few seconds of learning interrupted by lots physical play.  From the speech pathologist I learned a theory of fine motor skills: that large motor movement develops first then moves down the arm into the fingers.  She was teaching TsukiMoon cursive and wanted him to practice the letters in the air, initiating the motion from his shoulder to aid the development of the fine motor.

I combined these two ideas.  TsukiMoon and I would jump on the trampoline while writing out huge letters with the sweep of our arms.  Outside we would laugh, jump, and playing games with the letters.  What could have been difficult was a delight.  He asked for time on the trampoline to practice his letters.

To help with reading I went to the used book store every few weeks to find "new" books that had come in.  I bought every age-appropriate graphic novel I could find.  Books that were graphic novelesque, like Diary of a Wimpy Kid series or Bad Kitty by Nick Bruel were also snapped up.  The pictures compensated what he couldn't infer from the text.  They aided comprehension of emotions and plot, which he couldn't get from reading words alone.

Some of TsukiMoon's books. 

You might ask why not go to the library for all the books, and I did.  What is nice about owning the books was instant gratification.  We needed to keep him moving forward.  If he wanted to reread a book-- it as there.  He read them over and over again.  Each time a better grasp was built.  He needed more time then the library could allow.   

All of this created an avid reader (no pictures now) and a child who can write; letters and words and can also express himself.  Athena would be honored by his hard work and I guess, mine.

Mothers Day- Part 1

“Happy Mother’s Day!” was bellowed by the two people I love as I considered if I really did want to wake up.  My husband when he saw my eyes he followed with plan for the day, “ I thought we would head to the coast, walk on the beach, eat at our favorite place, and get you some yarn.”

Coming to I said, “Oh!  We can get chickens!”.  There is a great feed store on the coast where all us suburbanites get our chickens.

TsukiMoon said, “chickens?!  I want chickens.”  The deed was done. He and I usually charge in headfirst with enthusiasm.  It is common for Mr. TsukiMoon to act as brakes and voice of reason on most ideas we come up with.  

The thought that went through his head was probably, ‘oh shit.’  Since it was mother’s day he said little and got on the chicken train with us.  He was very nice.  With the addition of the chicks bought there are 8 critters in our small ranch.

The coast road fills up with cars quickly so I bounced out of bed.  We piled into the car, made a quick stop at Starbucks, and were off .  We even took the dog.  

We got to the coast at about 8:00 in the morning.  Bella hadn’t even been walked that morning.  We went to dog-friendly beach to walk Bella and enjoy ourselves until things in town opened up.  

I left Mr. TsukiMoon with TsukiMoon to walk Bella down the beach.  It was a healing walk.  I started to fantasize about how nice walk next to the water everyday.  I felt small, in a good way,  much like one of the waves breaking on the shore.  It reminded me that I have only one chance to do whatever there is and not to be afraid.  I was emboldened by peace I felt in my bones.

We have a saying in our house that we repeat regularly:  It will all work out.  This applies to money, to TsukiMoon, to work, to life.  When ever my husband or I feel roughed up by life, we settle the thoughts, let go of the situation and say, “Everything will work out.”  What it means is that we need to let go of the results and just keep putting one foot in front of another. 

When we walk away from the results of what we want and just focus on the now we are free from the punishment of it not turning out exactly right.  What do we control now? 

Bella was happy but feeling none of the enjoyment that I was.  Her little short legs make any long walk a chore.  I would turn around to see how she was doing.  She would be standing, looking at me like I was crazy to walk so far., It’s as if her face said, “hey lady, you know the car is in the other direction.”  He enthusiasm to explore diminishes over time.  If it wasn’t for her fantastic nose she would probably call it a day after 10 minutes.  She is a loyal dog and managed to keep up because she wants to be with her human.  She makes a great companion on the beach even if not a best running/walking partner.  Her calm presence added support to the tenuity I felt in the face of the mighty Pacific Ocean.  She is a good dog.

Drug Study Update May 14

A fun poster I saw at school today. 

I am witnessing behaviors in TsukiMoon that I have never seen before.  We just got home from school today.  At pick up he came bouncing out of the classroom and instead of having his head down and walking off campus he talked about his day!  Really, miracles never cease.

When we were ready to walk home he said good-bye to a kid in his class.  The boy, C, gave a lack-luster response but it didn't dampen TsukiMoon's happiness.  He told me that C and him had discussed living in an airplane, a 727, when they grow up.  TsukiMoon informed me that they think they can buy a mothballed one for about $500 since it won't have engines or seats.  It was just the shell and shouldn't be to expensive.

This is amazing because it means he had a conversation with another classmate and it sounds like it was fun.  In the past when I have heard conversations at school it is about a dispute.  Not so fun, this is much better.

To top it this trip into the incredible trip into the amazing TsukiMoon gleefully says, "let's skip all the way home."  Who is this kid with all of the energy?

Demanding Chicks

The chicks have been in the house for 2 days.  They are starting to demand things.

The Chicks Getting Settled In

The new chicks want to make sure we understand their desires.

Warhammer 40K Ork Meets a Chick

Cute vs. Ugly

Chick Channel Central

Oh my goodness, the new obsession.  

This is definitely the fun part of autism: the absolute focus on a topic.  Everything chicken is the one thing on his mind.  Stand back, if you are ready to talk, well, listen really, about everything having to chicks and chickens you are in a good space.  Oh, help us if, we mere mortals need to talk about something else for awhile.

I love the passion.  In the past 48 plus hours I have learned about a natural coating on the outside of eggs, solar panels to run electric fences, and how to build our own watering system with PVC pipe using something called poultry nipples.

After TsukiMoon went to bed on Mother’s Day we searched Amazon for a book chickens.  We found “The Chicken Encyclopedia, An Illustrated Reference” by Gail Damerow.  Perfect, a rule book for chickens, right up his alley.  When it arrived yesterday he took it up to his bed and started to read the 300 page book cover-to-cover.

He went to YouTube to investigate chickens.  He landed on a nice man who posts videos all about his chicken coop.  The video blogger goes under the name SSLFamilyDad (SSL-- Simple Suburban Living.  They also have a blog.) The dad uses appropriate language-- good, has clear, easy to understand, complete videos, and now has a fan in our son.

We were going to reappropriate the large two-story rabbit hutch into a chicken coop.  It was the hutch sitting empty that prompted me to want to get chickens.  The proposal to use the hutch was met with lots of frowns and a stern “no you can’t do that.  It is a rabbit hutch, you can put chickens in a place for rabbits.”  

The old rabbit hutch.  Possible names for new coop; Chick-Inn, Egg-loo, Happy Coop.

We were able to get him to let us put to temporarily use the hutch while we build another.  This took as much negotiation as act of congress, but unlike congress agreement was met.

How long TsukiMoon will be engaged with the chickens is unknown.  Last summer we got a guinea pig with lots of promises to take care of it.  You can probably anticipate who takes care of it now.  That he can sell the eggs outside of the house sparks his interest and might keep it longer.  Nothing like the market economy.

Whether he stays interested or not, neither Mr. TsukiMoon or I regret any of the animals we have.  We have 8 and TsukiMoon wants 3 more chicks.  It creates work but the benefits outweigh the work needed.  We expect his interest to come and go.  We will fill in until his regard comes back around-- or not.  Our job as parents is to hold up a very large net so where ever he ends up he is supported.  (Even if it is only a few weeks.  Keep juggling mom!)

Drug Study Update May, 8

I witnessed something new yesterday. TsukiMoon talked to another kid!  The exclamation point is a bit tongue-in-cheek. I mean he talks to kids he knows for years but the was kid from another classroom that I have been told, "I don't like him."

TsukiMoon takes a swim class every Saturday. Two Saturday's ago someone had an epileptic fit in the pool.  It was closed until the emergency was over.  All the kids there for lessons or team practice had to hang out in the locker room until it reopened.  This other kid happened to be there. My husband was surprised because TsukiMoon said "hi" to him (effects of vasopressin?).

After school yesterday we ran into A's mom and him.  I asked T ( A's mom) what they were doing this summer.  The two of us talked until TsukiMoon broke in to the conversation about all the things he wants to do over the summer.  (The medicine doesn't seem to help with interruption.)  The conversation went from the mothers talking to the kids talking about swimming and the person who had a seizure in the pool.  I was stunned when our son offered up his hand in 'high-five' to A about how great the swimming was, both for the interaction and because of the camaraderie over sport.

The conversation degraded to typical boy stuff like fat people in the pool or people in the locker room not wearing a towel. It was all giggles.  The talk lasted until it was so inappropriate that the mothers decieded it was time to go, but the talk was long and joyful. It was a shocker to see. 

Today is the last week of testing at school.  TsukiMoon wore button-down shirt like the previous three days of test and insisted we got to school 7:00, it starts at 8:05. Today he raced out of the house saying, "I have to help Ms. M set up the classroom!  We got to go!  Come on Mom!"  The three previous days because we're at school so early the teacher kindly asks TsukiMoon if he would like to help prep the room for the test. The two of them go off and get the laptops which the tests are taken on together.  He puts down all the chairs of each students desk and sets out the headphones.  This is important is because since TsukiMoon was a young child, 2 years old, he has been unwilling to help in most work. Today he rushed us out of the house because he wanted to help.  That's new. 

There is no question to me that  vasopressin helps not only with TsukiMoon's anxiety but a willingness to interact with others. Nice.

  

Pets Teach Empathy

Peace in our time.

Fox and Arthur. 

My room mate from college stopped by our house.  It was the first time she has done so, and she brought her son: he likes animals, we have lots.  Four separate species not including us humans, living under the same roof.  She was enamored that all the critters got along so well.  Of course I set a low bar, no one has killed anyone else.  The two cats don't always get along, not for lack of trying.  Our older cat, Fox, which regularly grooms the other cat, Mu and the dog, Bella.  Mu might playfully, or not so playfully, try to take a bite of him but he persists.  The cats do sleep with the dog, especially in the winter.  The guinea pig hangs out with the rabbit when I clean either one's cage.

Mu and Hamster Huey. 

The reason for all the animals is to help Boo with social integration.  I call animals, "friends-lite."  They give feedback when noises are loud or the touch is rough but they are always his friends.  They like to be petted, played with, and are always gentle with him.  Through all the fur, hay, and other things less pleasant the animals have created a peaceful home and have taught TsukiMoon a lot. 

Bella trying to make friends. 

All the animals have different needs require different things.   Even the two cats require us to treat them with varying reverence. Fox is super old, 15, and walks like a old man.  Everything we do with him is as gentle.  Fox can't jump down well.  TsukiMoon has learned to pick him up smoothly to move him off furniture.  If Fox is on the bed he tenderly slides him to the side or gives him a ride to the floor.  This geriatric care is important to learn because he needs to apply it to his grandparents.  

The other animals cause an accession of other skills.  Mu young and cantankerous needs space when he is in a mood.  The dog, Bella, is a sleepy basset who only walks at her pace and can't be rushed.  She also shows that you can't always get everything you want.  She won't play in a way that he wants yet takes great pleasure to show her off at school.  The guinea pig, Hamster Huey, is by far the easiest animal in the house.  He is always cheery and gleeful to see you, he barks eager squeaks until you pet him. The rabbit, Arthur, is a French Angora, needs lots of grooming for him to look regal and not like one big clump of matted fur. 

Bella wants to so in my lap. 

These strays teach TsukiMoon to accept differences and to approach them with contrasting paths.   He also witnesses them compliant of each other even when they are so different.   The dog will  greet the cats when she get home, the guinea pig happily sleeps with the rabbit, and the dog and cats sniff the rabbit and guinea pig and are curious but don't eat them, Bella tries to play with Arthur. (I believe Mu is scared of Arthur even though he weights twice as much.  Fox doesn't care.)

He has learned acceptance of others and even himself through the patience of the animals show him.  The rabbit particularly have been good at this.  TsukiMoon loved to would bring the Arthur up into his bed so that he could read to it.  He would carry it around the house and snuggle it.  Arthur put up with it all, never wanting to run out on him.  If his touch wasn't quite right it's powerful legs would kick out, but Arthur would never bite.  All this touch as helped Boo understand himself, his body, and how he touches others.  It created a desire to do better because he likes them all so much.

Snuggles

Each of the creatures came from the SPCA or in the case of the cats, as abandoned kittens.  Fox came from a dumpster in the Hudson Valley of New York State,  Mu; a litter of strays living behind my uncle's house.  This is important.  How do you teach empathy?  Cause him to feel empathy?  He knows the dire situations from where the animals came from and except for Fox was there when we got them.  TsukiMoon appreciates that not everything, and possibly indirectly, everyone, doesn't come from perfect situations but we accept them for what are and what they can give. 

Horse Therapy-- Evaluation

TsukiMoon on the back of Stormy a Norwegian Fjord horse.

This past Friday after several miss starts we got our son an evaluation for horse therapy (aka hippo-therapy).  I had forgotten about the appointment and was unable to give TsukiMoon a warning that something was new in the routine. Amazingly he rolled with it, possible influence of the drug-trial he is part of.  I would pick him up early from school and ran him up to the stable. 

About two months ago we went and visited the horse therapy place and another stable that teaches riding to neurotypical children.  His 17-year-old baby sitter went with us an acted as tour guide.  She is avid rider.  Her riding stable was the "regular" one.  As part of Girl Scout badge she also had done a stint helping out at the therapy stable also.  

She was the perfect person to show us around.  TsukiMoon trusts her and is support of her having done things like pat her on the head when she works on homework while she baby sits.  We also took this girl to Europe last year to have an extra set of eyes to watch him and to give us a bit of a break in the evenings.  While in Germany we attended a Grand Prix horse show at which our son became interested in horses.  It might have been the super posh tractor-trailers that hauled the horses and gear that turned his head but he also like the impressive things the men could do with their horses while while Miss. K gave commentary.  From there I thought horse riding might be a good sport TsukiMoon   

Besides the interest I noticed, I considered that a horse would help him with areas of challenge.  Instinctually I felt that being able ride a giant animal would help our son with anxiety and confidence.  Also, it could become his "team" sport.  Just like other team sports it is critical to learn how to communicate.  Our son, normally silent in most groups and doesn't notice when people are talking yet cuts right across them to talk about his enthusiasm.  He is afraid to participate with others yet unaware of his actions have on them.  Team sports are great for learning how to be part of a group.  It is our hope that becoming more attuned to a horse, necessary for riding well, will help TsukiMoon gain; sensitivity to others, build empathy, and be better at reading body language.

The therapy place first evaluated TsukiMoon for proprioception.  What was determined is that even though he can balance well with his eyes open, he can't when they are shut meaning he relies on vision rather then intuitive body awareness.  He also has a weak torso-- no surprise to us.  These issues are directly addressed by proficiency on a horse.

With excited trepidation TsukiMoon was helped on to Stormy, a Norwegian Fjord horse.  Ms. O, the trainer, described a fjord horse as a walking sofa.  His back is soooooo wide, there was little worry of rolling off.  There was little chance of that anyway, on either side of the Stormy, to lend support to TsukiMoon's legs; there was the trainer, a helper, and an occupational therapist.  They slowly walked Stormy around the ring to determine if our son could go into adaptive riding or needed more intensive therapy. 

All the people who helped TsukiMoon feel comfortable to be on a horse for a first time.

While at the stable I also found out about a social group this summer, 10 weeks that utilizes the horses to help the kids interact with each other.  I decided that this might be nice change from the social classes that TsukiMoon have been attending.  It should be an engaging change-up and it might help him out.

Stormy falling asleep in the warm Springtime sun.

Travel, Medicine, and Food

A painting at Starbucks that I thought fit.

My husband's cousin recently died of a brain aneurysm.  His younger sister who lost both her brother and mother in the past year was visiting my husband's home town and wanted us to visit while they were visiting.  We bought a ticket and flew there for the weekend.  It helped my husband as well as his cousin process the deaths.

The challenge is that when we are away from home regular monitoring of TsukiMoon's food becomes unbalanced.  We were only there for two nights but his sleep and routine was upset.  Many of his words to left him and he went to one word demands.

We got back today, Monday, and it didn't get better.  He was a basket case tonight.  He didn't want to do his homework, almost cried about it.  There was a time when he wasn't taking the drug-trial medicine that he would have cried, hit, and been inconsolable.  So we can say that there has been improvement due to the meds.  We did learn that the vasopressin doesn't over-ride all the changes; irregular routine, less sleep, and a switch from as strict gluten-free and dairy-free diet to a frappuccino and bread free-for-all. 

It was a good lesson.  I was curious if the medicine would overcome the strict food plan.  I would like it if I didn't have to act as the hard-boiled food director.  Well, no, not yet.

He was terrible.  All possible sensitivity to others feelings was gone.  He would freely talk about issues that are private to the family.  Talk about how he owns expensive things in front of people who didn't have the same things, talk in a baby voice or a whiney one.  I would gently correct him, tell him that, "you don't say 'I have expensive things but say I enjoy _______ also.'"  Or "would you please not tell grandma that my blog get fewer page views then your blog, she doesn't know I have a blog."  (I keep this blog to myself as a way to communicate about all the work that I do for my son, because many people like my mother-in-law don't know of TsukiMoon's condition.  It gives me an outlet.)

He did some stimming when we got home but he didn't do it up there.  Again a positive change.  He went to bed with his chewy.  He didn't lip us (where he puts his mouth on us) or grab us under the chin (a calming-pinching motion he started when he was a breast-feeding baby).  Small successes.

STAR testing

TsukiMoon has his second day of testing today.  Today and yesterday he wanted to wake up at 5am so that he can arrive school at 6am.  We managed to talk him into waiting until 7am before headed to class.  (School bell rings at 8:05) He didn't want to be late.  He also dressed himself in a button down shirt both days.  He told me he wants "to look good for the test."

These are the parts of autism that are fun.  Super rule oriented, with strong opinions on what is right, TsukiMoon wants to present his best when he think it is called for.  

I have know idea how well he will do.  I was concerned that he said he finished Thursday's test before first recess.  "That's not good," I thought.  It suggested he was so concerned about completing that he wasn't taking the time to answer the questions fully.  It was confirmed when his teacher, before class (it turned out to be good to get there so early), reviewed with him the parts of paragraph that the test is looking for.  

The bummer of this test is that we don't get the results until summer.  Can we really have a discussion about how to approach answers at that point-- so long after.  No.  We have to let it go.  Except for the experience  of it, there is no way to help TsukiMoon learn to modify his behavior to have a better approach to test taking.  I can understand why these high-stakes test irk some parents.

But he was a dapper young man!

Homework-- Challenges for Mama

Sometimes I get a taste of what parents of neurotypical children must feel.  Some situations feel so universal that all parents must surely go through it.  Of course I wouldn't really know because we only have one child with ASD and I was also an only only child so I can't compare anything about childhood to what is typical to other children. 

Today it was an argument about getting homework done.  I don't want to be the one who drives homework to be finished but sometimes that's what end up happening.  I hate that, it only leads to anger and frustration on both sides; mother and son never end up happy.  On the bright side it feels very normal topic to get upset about.  I would guess that all parents, at some point, roll their eyes over the beloved topic of homework.  

I am happy to say school homework TsukiMoon is self driven.  He does a great job of quickly doing his homework before doing most other things, except reading.  Eventually he decides he has read enough and gets the work done.  Great! I have "school issues" leftover from my time in halls of ivy.  A continual C/B student, who always wanted to do better but didn't know how, I had wanted TsukiMoon to excel to make up for my deficits.  Since the diagnosis that has gone away.  Mostly.  It still comes up in an ugly way around homework.  It is best if I just steer clear of all homework.  The dust-up today was about uncompleted social homework.

TsukiMoon goes to a social class every week.  My understanding that there is not good evidence that social classes work to help children make friends.  We go because we don't know what else to do in addition to everything else.  We try everything we can.

he assignment this week was everyday to write down a feeling felt that day followed by the body sensations that go with that feeling.  A good assignment, I could apply to myself and when I get upset about homework.  ;-)  He hadn't done any of it and I hit the roof.  Really this is fear on my part that he won't become more skilled socially.  He doesn't deserve this anger, in fact it makes him his symptoms worse.

So much of parenting a child with ASD is about managing my own emotions.  To give TsukiMoon the best of me.  Of course learning to manage my emotions is important in every situation, when I don't it feels like I've just donated another pound of flesh to the cause.  It feels terrible.  No wonder sleep is elusive for me.  I keep at it, with the steady drum beat of: I must do better.

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.

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