Sunday, May 17, 2015

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.


Thursday, May 14, 2015

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?

Wednesday, May 13, 2015

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!)

Friday, May 8, 2015

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.

  

Wednesday, May 6, 2015

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. 

Tuesday, May 5, 2015

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.

Monday, May 4, 2015

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.

Friday, May 1, 2015

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.