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. 😄

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.

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.

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.

Just a reminder

It is funny what hits me sometimes and when.  Today the spin class teacher played the song "Hero" by the group Family of the Year as the last song.  It is a great song, both the lyrics and the guitar melody.  

It emotionally hit me today.  The song is about how the writer wrote a pleading response to his parents or society not wanting to have to fulfill the dreams of others and just desires to be normal, ordinary, not a "hero."  

I was drained after class from a hard ride.  This past year has been a roller-coaster and I haven't exercised regularly in a long time.  It's a new year though, as I find my feet and  found acceptance of our son, TsukiMoon's diagnosis and myself, it is time to get busy.  It was the first time I have been in a class with others and it was a bit triggering in general.  I have about 15 lbs. to lose and going back to all the thin people at the gym was a challenge, so maybe I was set up to be touched in unexpected ways.

The song touch the child in me, maybe the baby because self-pity flooded the post work out exhaustion-- no post-work-out high here.  I started to have tears fill my eyes.  The song spoke to the never-ending drive find solutions for TsukiMoon   There are no breaks in his care, and sometimes I don't want to be the "hero."  

When TsukiMoon was a "regular" child (as far as we knew), we had expectations of what we wanted him to be and do.  Now we just want him to be able to "walk with everyone else."  For TsukiMoon to be ordinary represents a Herculean effort on our part to help him understand expected behaviors.  Of course we now parent the child we have instead of the child we wanted-- that is better for everyone.  We have more love, more appreciation, better understanding but less free time.

Of course what did I want from life?  I asked my husband, Mr. TsukiMoon today, "did I really want life to be easy?"  What we agreed upon that hanging out watching TV or going to the movies doesn't hold our interest as it once did before TsukiMoon   What is needed though is balance.  

I'm not sure what a balanced life would look like because more then ever before my life has purpose.  Almost every action I take or work spoken has a purpose behind it.  It can be a bit much.  Things that are more precious like our marriage.  It is really nice to commiserate together with the depth understanding that only the other person can understand.  It has brought an intimacy that is unique in our already close relationship.

What I need to remind myself is that self-pity and resentment that struck me in spin class are the quickest way to dig a grave.  We have two sayings in our house that get us through most ups and downs.  One: "It is all going to work out."  Two: "No one said it was going to be fair," which brings us back to our first saying-- "but it's all going to work out."

Little Heartbreaks

I want to keep this blog about working towards the solution.  Sometimes things come up that seem unique to this off-script life that I find myself in.  This happened yesterday.  A small comment that derailed my day. 

I go to yoga class on Tuesdays and Fridays.  Yoga has helped me to be an even-keeled mother, that way I can do my best for Boo.  I would like to do it more then two days week, it helps me transcend the dailiness of life and find peace.  

A mutual friend of the instructor asked me to say "hi" to Mrs. J at the next class, so I did.  Mrs. J asked how I knew Mrs. S?  I told her that we met at pre-school.  This got me into a discussion with other members of the class about; the pre-school, ages of our children and what schools they attend now.  One of the other people in the class happened to be a previous board member of the pre-school.  His children were much older and he nicely informed me that, every new horizon in his children's lifes' were all great and brought benefits and excitement.  It felt to me as though he was trying to give good-natured advice about enjoy your kid.

None of what he said was bad, it was well-meaning.  It seemed like a prototypical comment of someone with "normal" children might say.  I had nothing to say to him.  What could I have said?  That we celebrate when our kid actually talks to another person?  When he can go out to the car by himself to get the book that he left there?  

I had a small heartbreak at that moment.  It was hard to "transcend" the rest of the day.  Part of the reason was that we had a terrible time at that pre-school.  We had to take TsukiMoon out of pre-school when Boo was 3.  He ran into a teacher who clearly didn't like him and was rough on him.  Mr. TsukiMoon and I decided to have TsukiMoon leave mid-year because he didn't need to be subjected to her anger.  

That well-meaning comment caused remembrances about all the "experts/educators" that saw TsukiMoon as a problem, who didn't like him, but never suggested that there might be another issue (Boo wasn't diagnosed with ASD when he was 7 3/4 years-old).  It also brought up frustration with my lack of understanding with TsukiMoon  children in general, and that I should have been more aggressive to find answers, the frustration that lack of money made that impossible. 

At this time I thought that my kid was a great kid.  Frustrating kid, yes but lovely all the same.  Smart and capable TsukiMoon was a young child who behave just like that, a young child.  The adults who had issues with him was, well, their issue, not TsukiMoon's.

My day was completely waylaid by all this: a regretted past.  I watched Netflix for the rest of the day, a lost day.  Then because I didn't accomplish anything I dreamt last night about being in the show The Walking Dead, where I was one of the zombies.  All pretty terrible.

There was one good thing about the day besides attending yoga class, I found a new quote.  I love quotes and collect them.  

Be bold and mighty forces with come to your aid.  --Goethe

Answer the Unanswerable

Objective:

Answer the unanswerable.  Why us?  How did TsukiMoon get this disorder.

Theory:

If I go around on this question I will suddenly understand what has no answer and some how it all will be better.

On The Ground:

Of course knowing; why us? why TsukiMoon  doesn't solve anything, doesn't help anyone.  TsukiMoon has ASD, us knowing why doesn't help him in the day, to day.  It might if the discussion happened before he was born, maybe.  We might have been able to address it, probably not.  Autism wasn't even on our radar.  But should it have been?  Probably, but we didn't ever really know what it was.

Genetics-- are they a factor?  

When we got the diagnosis for TsukiMoon our two families came into sharp relief.  Ohhhh, it's all so clear.  That's way my mom acts that way.  Maybe that is why my uncle never married.  That explains the note in Grandpa's jacket, that he carried always, had his home address on it.  Maybe it explains that cousin and his father.  Mr. TsukiMoon and I have family members who have traits that, through the lens of autism, seem like autism.  Then everything looks like a nail when you have just been given a hammer. Anyway we probably come by this naturally.

For my side of the family my uncle life makes more sense now. He was a shut-in, who hoarded his money, and wouldn't let anyone into his house.  My mother, who might be on the spectrum as well, always said he was smart.  What I know is he was quick wit, well educated, reading and retaining most of what he read, always consuming more information, and could hold a grudge.

He was also a adult never really able to act in an adult way.  He even looked like a big baby; soft and doughy.   He was dangerously jealous of his mother's affection not letting his sisters visit their mother, standing guard over the door of the house he shared with his mother.

After my grandmother's death my mother wouldn't visit him without my father because she was afraid of him. When he died we found 10 firearms in the house. The question was: did his challenges start with an initial autism type brain exacerbated anti-social behavior by ill treatment by the heavy hand of his father?  Or in plain parlance was he just nuts?  Who's to know?

I want to make it clear: autism comes in all shapes and sizes and that my uncle's issues weren't necessarily autism related.

My uncle seemed to be a disappointment to his father.  There couldn't be two more opposite people my grandfather was an extreme extrovert.  He made friends everywhere and like to be the center of attention.  What he got was; one normal child in my pretty aunt, his son, and my mother who might be a savant but has weak understanding of people.  I think it was hard on Grandpa, two super intelligent kids that were introverts.

On my husband's side his grandfather was a scientist/engineer but couldn't find his way home at the end of the day without the help of the address that he kept in his pocket.  One of his sons' has a deadpan demeanor; stereotypical, introverted scientist.  His son had crippling anxiety and couldn't get out of his own way.  

All these stories are sad, interlaced with pain of expectations, disappointments, and no or late treatment.  Then add the weight of parents who wanted more then their children could provide and it was too much for many.  Was the impedes underlying autism?  Know one will ever know.  Before TsukiMoon's diagnosis we never looked very closely at these extended family and certainly attach a possible common issue to them.

TsukiMoon's diagnosis freed me to let go of hopes and dreams for TsukiMoon's future.  Any pressure I might have been put on him was taken away.  TsukiMoon was then free to pursue his authentic self.  Him and I are more loving and accepting for each other.  Me because I don't have secret wishes for TsukiMoon that interferes with unconditional love.  TsukiMoon because he has a mother who accepts him, he can be more relaxed.  

On the other side the diagnosis has left me with, at times, a crippling loss. I didn't have someone to pin my solutions on.  I hate to say it, save me.  I was now  in charge of my own outcome now, own happiness.  Obviously a good thing.  To expect a anyone to solve the life of another is too much to ask of anyone, especially to ask a child.  ASD has been a gift for our family, even for TsukiMoon   He has two parents that; facilitate his interests and are accepting, love him unconditionally.  For us, we too have been freed, we can now live an off-script life.  No keeping-up-with the Jones for us.

Nothing about this experience with TsukiMoon has been easy but where would he and we be without the diagnosis?  Following the broken path of ancestors?  Our family of three, all get to make the most of this life.  TsukiMoon has excellent parents who love him for just who he.  What more could any of us want more?